Dakin bLog

The x-ray shows patchy infiltrates. The lungs have worsened. A CAT Scan is scheduled for today. Pulmonary doctor came and did an initial exam. The pulmonary doctors will be back today to talk about their findings. All I have heard so far are guesses of what it could be. I wish God would heal him already. This has gone on almost 3 1/2 years too long. Why is he going through all of this?

Richard and John are up at the clinic now. John is getting IVIG, which is a medication to help boost his immune system. I’m anxious because Richard called and said they hooked John up to oxygen because his level was at 84-87. A x-ray was ordered because he seemed to be spitting up more blood. The results are not in yet. I am hoping he will improve rapidly and not have to be admitted. The last several days he has been spitting up less. I am really not comfortable with them not having an answer to his lung problems. This is very frustrating. A stem cell doctor from the affilated adult hospital is coming on Monday to consult. We have been talking to John about switching his care to the other facility. We’ll see how this consultation goes.

John did get to come home the 27th. He was spitting up a bunch of blood while he was hospitalized and then it slowed closer to discharge. Yesterday and today it picked back up again. It worsen overnight. The plan is for him to get a CT Scan today of the chest and a pulmonary procedure Monday. He will be asleep during the procedure and they go into the lungs with a camera to look around and get a sample of the bacteria or virus that is causing the problem. They just don’t know what is causing him to cough up blood. He is being readmitted today. One reason is it’ll be easier to bring him down on Monday for the procedure if he is already there. Plus, they can keep a closer eye on him in case anything developes.

I’m really struggling with keeping a positive attitude today. Frankly, it doesn’t seem to matter what our attitude is.
Bad stuff keeps happening irregardless.

As long as John doesn’t need oxygen today or tonight he can come home tomorrow! I don’t anticipate this will be a problem because he hasn’t needed the oxygen for over 18 hours. He will be getting 2 different types of i.v. antibiotics at home at 2am, 10am and 6pm. Plus he gets his regular feeds over 8 hours. His med schedule is not as demanding as they first thought. He is doing good today. A little tired but ready to come home.

As long as John doesn’t need oxygen today or tonight he can come home tomorrow! I don’t anticipate this will be a problem because he hasn’t needed the oxygen for over 18 hours. He will be getting 2 different types of i.v. antibiotics at home at 2am, 10am and 6pm. Plus he gets his regular feeds over 8 hours. His med schedule is not as demanding as they first thought. He is doing good today. A little tired but ready to come home.

Things have improved so rapidly! John’s chest is clear. At first they went back and forth with pneumonia, pulmonary edema, but the final diagnosis is that his lungs are clear and were clear since he was hospitalized. He has needed to be on quite a bit of oxygen, up to 6 liters this weekend. He has a strep infection in his esophagus track. This is a different class strep than what you think of with “strep throat". This infection has caused quite a bit of tightness in his mid chest area, sternum. He takes breathing treatments of Arbitral 2 x’s a day to help with this.

He also has the infection in his urinary track and the staph infection at his g-tube site.

He has improved so much in the last 2 days! Yesterday he got off the oxygen and walked down to Children’s Harbor and played basketball! When he got tired he sat down in his chair, rested and got back up and played again! Today he did the same thing. Today he hasn’t needed oxygen at all! The doctor said she would like to release him, but he was so sick and on so much oxygen just so recently that she’s not comfortable doing so quite yet. She is talking about releasing him soon if I think I can tend to his demanding healthcare schedule. He is on i.v. antibiotics 4 times a day, for an hour each. He also is still getting the feeds at night. I told her we would do fine that being home is much preferable to being inpatient.

I can’t believe the difference in his skin since he started the steroids! It looks better than it has in months. The terrible abdominal cramping he was having that he was getting Morphine for has subsided as well. Both of these improvements seem to confirm that he had graft vs. host disease of the skin as well as gut.

The thyroid medication is being increased weekly and I can’t believe it, but, he hardly complained about being cold today! He was trembling in his sleep so bad last night that the nurse gave him some medication for it. However, in the last 2 days it has improved so much. It is strange to see him now lying in bed without covers.

Today is the first day I have seen him do anything athletic in over 3 years! I could have cried. I was just flooded with joy. He did well too! I forgot how naturally athletic he is. One of the nurses commented that he is stronger than she has ever seen him.

I am filled with hope. Its been a good day.

correspondwithme@gmail.com

The x-rays today show a worsening of pulmonary edema. They are treating it by tripling his normal dose of Lasix. He had a lot of chest pain last night. His throat also hurts. He spits up a lot of blood and they think it is from his throat. The culture of it is growning something. He has another urinary track infection. It is a different bacteria than the last one. Richard brought up his comforter from home to add on top his other blankets. He still shakes. He’s been getting Demeral prn, and that helps with the shaking and chest pain and he can breathe a lot easier too on it.

His oxygen rate went below 90 today and he is now on oxygen at 2.5 litres.

So discouraging. Richard is up there now and I came home to sleep and shower. I haven’t brushed my teeth or taken my meds since Friday a.m. It was a bad night.

Yesterday John complained some about having difficulty breathing because of “stuff” in his throat. We went ahead with the pulmonary tests. The results were disappointing to me. They were impressive before transplant and now he is below adverage on almost all tests. However, they are much improved from the limited pulmonary testing he had done in August when he was in for pneumonia. The doctor was pretty pleased with yesterday’s results considering all he’s been through with total body radiation, pulmonary edema, pneumonia 2 x’s, severe deconditioning, etc. She feels the lungs will continue to improve. She actually felt the results were better than what she had expected. I have to admit, I was wanting to see evidence of Lance Armstrong’s quality lung capacity!

THE BAD NEWS:
This morning he was still complaining about difficulty breathing and by noon his chest was constricted and he felt like he couldn’t get enough air. He was having chest pain as well. I called ahead to clinic and they were prepared for us when we got here. Immediately he was hooked up the the oxygen monitor, blood pressure monitor and all vital signs were monitored. His oxygen level showed 100 and I was so relieved! The thing that was going through my mind was pneumonia again. Within about 1 hours of being here he had a EKG and chest x-ray. The EKG was good and the x-ray clear. Things were looking up. He was showing signs of his airways constricting and he was given a breathing treatment of Albuteral to open them up. I’m not sure if I spelled that right or not. He didn’t feel it helped much. His feeling of being cold was real bad today. He was shaking a lot and was given Demeral to help. Because of the severity of his symptoms he was admitted for observation. The tightness in his chest was bad tonight and the doctor was consulted a couple of times. The day doctor today suspects pulmonary edema -again- but she’s not certain, nothing showed on x-ray. The doctor tonight suspects something muscular is going on. Could it be that he hurt himself doing all the breathing tests yesterday? I don’t know. They were rather strenuous.

His muscles are aching because he had been shaking all day long from being cold. He is lying in bed now with a fleece hat on, fleece coat, long sleeve shirt, long pants, fleece blanket and several hospital blankets. His temp is 97 something. He’s sweating, but still is cold. They brought up this old machine from the 50’s the color of industrial green and hooked up a blanket to it. A thermometer was adjusted to 95 degrees on the machine and water is heated to that temperature and circulated throughout the blanket. The machine was loud! Which would of been tolerable if the thing worked. The nurse swore the blanket was warm but to me it felt barely tepid. It was like the temperature of spit. We asked to turn it up, but the doctor wouldn’t let it go above 95. Now our electric blanket gets warm! Last night he was shaking so bad it was awful. I cranked it up to high and put a sheet on him and it on top and let it go for 20 minutes. His shaking stopped and I turned it down to medium. Soon after I took it off and he slept with he regular comforter. Of course, it is against “hospital rules” to bring it up here. I’m mad at myself for asking about it. I wish I would have brought it up here and just plugged it in and used it. I’ve noticed that certain things are allowed here and nothing said to you if you don’t ask first. He’s been waiting for over an hour for an i.v. dose of Demeral for the shaking. The nurse has come in here a couple times and explained they are having a problem getting it up here for him.

He has been having increasing intestinal cramping as the weeks go by. It was very bad when he was in here for the infected toes, then it got better and now it is getting much worse. He sometimes has to take Morphine. Today his primary doctor said she suspected graft verses host disease of the gut and possibly gvhd on his skin. She put him back on a short dose of steroids. I hate that. She did not want to put him back on them again but it seemed to be the thing to do.

Tonight he has also been nauseated and has thrown-up. She stopped the feeds tonight to see if that would help his cramping.

This is awful. How much more does he have to go through before he gets better?? His stamina is amazing. He just keeps going on and fighting and fighting.

How much more Lord? How much more?

Nothing much to report, thankfully nothing bad! John’s last appointment was last Friday. His next was scheduled for Wednesday. They called and rescheduled for Thursday because he is scheduled for a lot of tests on that day. In particular, a heart ECHO and pulmonary test. These are just routine for his one year post transplant check-up. Can you believe we are going 6 days without an appointment?? I can scarcely believe it! We can get used to this! Just last week he went twice, the week before, I don’t know, 3 or 4 times. His spirits are ok for what he is still going through. He is still on 2 scheduled anti-nausea meds and one different on for break thru nausea. The nausea has been pretty bad. He’s on so many meds a day. Gradually the number decreases as we go on, but he still takes over 35 a day. Maybe he’ll feel better when he gets off the antibiotic, Flagyl, for the C-Diff. His major complaint is still being cold. I think this is improving. Maybe its just my wishful thinking. The electric blanket has helped. He is dressing in more layers.

Deborah and Richard went and visited Troy University on Saturday. Deborah is accepted there, but hasn’t made up her mind where she wants to go. She liked it there, but was not impressed with what the town had to offer. Today she visited UAB. She was not very serious about it until she saw it. It has much to offer. It is not a gated college like some of the others she visited and is right in the city. Since it’s enrollment mostly commutes (over 70%) we felt it wouldn’t offer a sense of college community. But, after touring it and hearing about the huge array of activities, clubs, sororities, etc. we see that the college experience is what you make of it and what you want out of it. We think it would be best for her to stay in a dorm and get away from all she’s been going through here. She experiences so much heartache here that I think some distance would be good for her. Plus, she wants the experience of “going away” to college. I don’t know what she’ll decide. She’s visited colleges all over, in Florida, Missouri, Georgia and Alabama. Where ever she goes will be too far for me, even downtown Birmingham.

Last week, on the 6th, was John’s one year anniversary of his bone marrow transplant. He had his one year bone marrow biopsy today and it went great. The doctor said it looked the healthiest she’s ever seen it. His platelets are actually in the normal range now! He got some IVIG last week to boost his immune system. Richard, Jewelia, Deborah and I all got our flu shots this week. We need to have them to protect John.

It’s hard to believe a year has passed. This has been the longest year I have ever experienced. John’s been in the hospital for 6 months total since last October. He’s doing better in a lot of ways. Diagnosing the thyroid problem has made a big difference. I always thought the thyroid just controlled all the things that made you feel comfortable. But, it does so much more. An inactive thyroid can actually become fatal. His skin continues to peel, but not as severely as before. We still use a tub of Eucerin moisturizing cream a week. The doctor contributes this to the thyroid. Also, he is so cold most of the time. It is unreal. Sometimes he’s under 3 comforters and still shakes. The only thing that really helps a lot is warming the comforters in the dryer and piling them on him and him wearing a stocking cap. One day I turned off the a/c and it got to 85 in the house and he was still under the comforters and was still shaking too much to take his shower. I bought an electric blanket yesterday for him. He said it helped yesterday. He doesn’t sleep at night with it, just uses it during the day. Today the doctor who is on service gave him a RX of Demerol to control the shaking when it becomes uncontrollable. The last doctor who was on didn’t want him using it. Hopefully, he’ll only need it a couple times a week. I do see improvement in the area. He really dislikes taking narcotics.

Speaking of narcotics, he is totally off the Oxycotin. He was weaned off of it and onto Methadone and as of today he is off the Methadone as well.

He has been fighting nausea a lot more than usual. He was doing so much better and was eating three good meals a day and then the infected ingrown toes episode began and he was put on Cipro. We think that is what has been responsible for the nausea. He got off the antibiotic today as well so hopefully it will improve soon.

Last night Richard and I went to the Bone Marrow Transplant Support Group in Homewood. It was a small group, everyone was so nice. The two facilitators were employees in the UAB transplant unit. It was so nice talking to people who have been there and have come through it and are living normal or semi-normal lives. I gained some perspective I didn’t have.

Talk to you later.

John came home today. His toes are much better. He was sent home on Cipro. Hopefully that will hold everything in check. His clinic schedule for the week is Monday, Wednesday and Friday, so we get somewhat of a break. The hospital stay was a small set back. John was saying the same thing today. He said his appetite isn’t what it should be now because of all the antibiotics he had there. His party last night was a success. Some of his friends stayed for 5 hours and others stayed up to 10 hours. His spirits are up today I think in part to seeing everyone. I’m grateful the staff turned a blind eye to the visiting hours policy.

Sorry this is so long in coming. Life is so full and demanding and it’s hard to clear my mind and put down a post which makes sense. So much has happened, and I know I’ll leave a lot out. First of all, I want to thank everyone who sent John birthday cards. The outpouring of love meant a lot and thank you especially to the Weirton, WV and Burgettstown, PA area people. A lot of people heard of John through Aunt Karen and we thank you personally for spreading the word about John so people can keep him in their prayers. I know that this simple web log reaches 100’s of people a week because I can check the statistics online, and that statistic alone comforts me knowing that people care. When I hear from you, by way of emails or letters, that can encourage me so much to keep on fighting the fight. Some people have commented on the “comment forum” being closed. We had to close it because we had to delete up to 100 spam messages daily. The only way to do this was to open them and check the contents. Sorry for the inconvenience. Now, to update you on John.

John’s 19th birthday was Wednesday, September 28th. He had an appointment with the Endocrinologist then an appointment in the Stem Cell Clinic. He was having problems as soon as he woke up. The nurses in Stem Cell had planned a party for him and he had commented Tuesday that if he had a suit, he would wear it to the party. The next day he didn’t even feel up to changing. At the Endocrinology Clinic we discovered he had a fever of almost 101. After the appointment there his temp went up to 102.6 in Stem Cell. So, of course, he had to be admitted on his birthday. The nursing staff was very sweet and compassionate. They were so sad; one looked to be almost crying. Nevertheless they had pizza and brownies and came in his room singing “Happy Birthday!” He had planned on doing the Chicken Dance with everyone, but he had to give a rain check.
Monday night he started having problems with his big toes, believe it or not. By Wednesday they both were infected and appear to have grown in toenails. Chemo can wreak havoc on your nail beds and I think they have grown some horizontally. He recently found a couple of hairs growing between his cuticle and nail on his finger. Anyhow, the theory at this point is that the infection has caused his fever. He was put on antibiotics, Fortax and something else, and within 2 days he developed C-Diff again from the antibiotics, which causes bad diarrhea and cramping. They were going to let him go back home yesterday, but his temp went up to 101.1 as we were waiting to discharge him.

The diagnosis of hypothyroidism was made on the 20th and he started on the Synthroid then. Within a couple days he started feeling better and so many changes began to occur. His skin started to heal, finally! He began eating and soon was eating 3 meals a day in addition to the g-tube nutrition. Before he was getting his nutrition through the tube and eating maybe one very tiny meal a day, if that. He started daily walks outside. He got strong enough to walk up to the clinic and down to the parking deck when through at clinic. He didn’t need the wheelchair anymore. All this within a week of being on Synthyroid.

On his b-day he was too sick to walk much and his toes hurt so bad! He continues to have bad shakes and chills, with or without fever. This has been happening for months now. The doctors don’t have any answers for it. My personal theory is that the chills are connected to his skin healing.

He has had the same doctor for over a month and now a new one has come on rotation. The main doctor had been out of the country and another is one maternity leave. So this particular doctor had an unusually long rotation. I felt he did a good job. But, maybe a fresh pair of eyes will be advantageous.

I have been sleeping at home. When John is home nights are disruptive because of the feeds and various reasons. John and I are usually up 3-6 times a night. Each of the past 3 nights I slept 11 hours. I feel somewhat restored.

Some of John’s friends are coming up soon for a party for his birthday. I get some pizza and they’ll have cake and I’ll make myself scarce. I’m so happy he’ll get to be around his peers.

I’ll try to post soon! Keep praying!

correspondwithme@gmail.com

This is going to be a quick update. I don’t have the time for a detailed one and I’ll write one later. I just wanted to give you some “good news” that can potentially turn things totally around for John in a big way. John has been doing real bad. His skin continues to be a problem, he has a hard time tolerating feeds, his mood has been depressed, lethargy, constant chills that only stop by Demeral and piling on hot comforters from the dryer, and on and on. Everyone has been very concerned. Tuesday I requested they run another thyroid test. This has been done before since transplant and has been just ok. THIS time however, the results were staggering and show his thyroid not functioning at all. Severe hypothyroidism. The staff was estatic. The doctor said this can explain everything and can be managed by Synthroid, synthetic thyroid replacement. He said the t.b.i., total body radiation, probably destoyed his gland and he’ll have to take replacement for life, but he was positive about it being manageable. The nutritionalist, nurses, doctors, everyone was so relieved and optimistic that an answer was found. I am cautiously optimistic. Can this really be IT? I hardly dare to believe. They said we should see results within days. Today he did walk outside down the block. Yesterday he did do some shopping at Radio Shack and Books a Million. These things would have been impossible earlier in the week. For instance, last Saturday he slept 20 hours.

Thank you to those of you who have send birthday cards to John. His 19th birthday in September 28th, next Wednesday. This is an incredibly lonely journey, and the cause for much despair and your cards have helped lighten his mood.

John elected to have a gastro tube inserted into his stomach. This will enable food and medicine to be inserted directly into the stomach and facilitate removal of the TP tube that has been in his nose for a couple weeks. He continues to fight nausea and chills. The doctors are treating his skin like he is a burn patient now. He continues to peel and lose skin. His internal temp last night was 95. He stays cold and shakes constantly. They give him Demoral to stop and control the shakes.

Surgery was planned for around noon yesterday and he did not go down to OR until 7:30 PM. He got back to the room after 10 PM. He had a blanket they use for burn patients on him that they heated and he liked that. The nurse took it off though. She said he had too much on and it would make his skin sweat. He stays cold and covers up with blankets and this makes him sweat. It must be strange to sweat and shiver at the same time.

The schedule delays have caused a logistics problem for us today. I was up at hospital from 9 AM till midnight. Diane stayed home a took a nap and got to hospital around 5 PM. The plan was for her to stay with John last night. Neither one of them slept and I can not get back up there until afternoon because of two other things we have scheduled this morning. I called my mom and she is heading up there to relieve Diane. John is so weak now and is really suffering today!

The reason for the skin issue John has is a matter of difference. The perspective and opinions vary depending upon the physician. He developed a severe case of red man syndrome due to a very strong antibiotic named vincomyacin and contrast he was given before an CT scan. This rash covered him from head to toe. It has been extremely slow to heal. He has been peeling constantly. His bed is covered in dead skin. He picks skin and hair off his body and presents them as gifts to his mom. He is suffering so much. He has suffered for more than three and a half years.

He has been able to walk for 10 to 20 minutes each day now on the treadmill in his room. I expect that will not happen for a few days now as his stomach heals. Then he will have to withdraw from morphine again. How much longer? How much longer Lord?

John was re-admitted this past Tuesday, August 16. While he was in for his scheduled clinic visit he developed fever. His lungs have areas of what the call “infusions", with are areas of fluid collections in and around his lungs. Apparently these areas act as sort of a petri dish for bacteria and were probably causing the fever. The said these areas of infusion is bigger than the pneumonia in the lungs. This is caused from a very low level of albumin, which is a protein found in the blood. When this protein is very low the vessels leak fluid and cause fluid retention. He gain 8+lbs from Tuesday to Thursday. He is receiving the blood product Albumin twice a day. His blood pressure has also been affected. Wednesday and Thursday night it hovered around 93/34-90/30.

His skin is peeling profusely from the Red Man’s Syndrom he experienced last week from the reaction to the Vancomycin. It is literally unbelieveable how much it is peeling. Everytime he gets up his sheets need changed. He aptly described his skin as looking like “frosted flakes". I cannot begin to describe how bad it is. It also caused terrible itching and he takes Benydral and something else for it.

He is still experiencing moments of intense shaking from the Red Man’s. When it won’t ease up he gets Demerol.

I’ve been spending the night and most of the days up here. Richard comes up and I go home and sleep in the afternoons.

John just got back from walking the hall. Thankfully, the Lasix is working and the swelling is still terrible, but he can walk now.

I think he is going to have a good sleep tonight.

John was re-admitted this past Tuesday, August 16. While he was in for his scheduled clinic visit he developed fever. His lungs have areas of what the call “infusions", with are areas of fluid collections in and around his lungs. Apparently these areas act as sort of a petri dish for bacteria and were probably causing the fever. The said these areas of infusion is bigger than the pneumonia in the lungs. This is caused from a very low level of albumin, which is a protein found in the blood. When this protein is very low the vessels leak fluid and cause fluid retention. He gain 8+lbs from Tuesday to Thursday. He is receiving the blood product Albumin twice a day. His blood pressure has also been affected. Wednesday and Thursday night it hovered around 93/34-90/30.

His skin is peeling profusely from the Red Man’s Syndrom he experienced last week from the reaction to the Bancimyicin. It is literally unbelieveable how much it is peeling. Everytime he gets up his sheets need changed. He aptly described his skin as looking like “frosted flakes". I cannot begin to describe how bad it is. It also caused terrible itching and he takes Benydral and something else for it.

He is still experiencing moments of intense shaking from the Red Man’s. When it won’t ease up he gets Demerol.

I’ve been spending the night and most of the days up here. Richard comes up and I go home and sleep in the afternoons.

John just got back from walking the hall. Thankfully, the Lasix is working and the swelling is still terrible, but he can walk now.

I think he is going to have a good sleep tonight.

John was finally able to go off the oxygen last night and he is scheduled to come home in the morning. He is feeling much better and hasn’t been needing Morphine for pain. John’s counts have come up considerably and everyone is excited. The doctor said that his counts are the best news of the month. She even mentioned he needed to start thinking about getting the Hickman Catheter out! I can’t imagine that yet.

One of the rehab people came by and is talking to John about getting involved at a Rehab facility, on Lakeshore, doing recreational therapy. The doctor is encouraging him to do so to give him some place to go other than home and the hospital.

John had been taken off his i.v. antibiotics over the weekend and remained feverfree. So, Monday they discharged him, even though his temp was 99.1. He got home around 2:30. As soon as he got home he laid down and took a long nap. When he woke up his temp was 102.5 and he was readmitted by 6:30-7:00. Needless to say, we were all so discouraged. His pain in his chest has continued from the pneumonia. Today was a bad day. This morning he had 6 staff members in the room and everyone was very concerned. His temp went up to 102. His respiratory stats had dropped and he was put on oxygen. His blood pressure had dropped significantly and he was having horrible abdominal pain, coupled with the existing pneumonia and shoulder pain he was suffering a lot. After several i.v. doses of Morphine it had lessened, somewhat. It took a long time. He has taken Morphine all day to keep some of the pain at bay. He got a x-ray of chest, abdominal ultrasound, and CT scan. All the tests looked good. The CT showed the pneumonia has really improved. There was nothing remarkable that showed what the source of pain could be. The Morphine has significantly slowed his bowels, so that may contribute to the pain. He hasn’t wanted Richard or I to spend the night since he was admitted last Thursday, but he is letting me stay tonight. I would of had a hard time sleeping at home because of all the stress and worry all day here. That’s all for now.

Things can change rapidly around here. John was complaining of a lot of pain below his ribcage yesterday. It was so bad that he was taking Morphine and Oxycodone. We called the doctor and she thought it was a pulled muscle because of his symptoms. This morning he had a temp of 103.6 and I brought him in. He has pneumonia. It is in his right lower lobe and is serious. They think it is bacterial pneumonia which is better than viral pneumonia. He is on big gun i.v. antibiotics. His spirits are good and he jokes around. He still has some pain. They said he’ll be inpatient 10-14 days. His platelets fell to 70,000. This is so unexpectant and such a devestating blow to the good news we had been getting.

Keep us in your prayers.

It’s with a happy, joy filled heart that I can finally bring you some great news! It appears John’s boost was a success! Last Tuesday, July 18th, his platelet count was 32,000, today, one week later it is 92,000! I was going through some papers this week and saw back in September before his transplant his platelet count was 88,000. So, he now has a better count than he has had in 10 months! His red blood count and white blood count are up as well. The rbc is not as high as I thought it would be, but the doctor thinks it is because he is finally switching to his donor’s blood type and lower rbc’s sometimes happen during this transition. We’ve waited 9 months, since transplant for these counts to be responding like this! The gvhd, graft-vs-host disease, is slight now, he just has the remnants of a rash. His energy level is up and so are his spirits. The doctor said today that soon some of the activity restrictions can be lifted. In a couple weeks we’ll begin the taper of Cyclosporin, the anti-rejection drug. He is finally off his steroids!

Thank you for all your support and prayers! Richard and I will keep you updated with more good news soon!

On Wednesday July 6th John was given a boost of donor cells. The donor sent a really nice card with the donation. We have been anxiously waiting to see if the new cells will cause the engraftment to work better.

During the past two weeks John has had an upper respiratory infection. This had him feeling pretty bad. We went to the clinic Saturday morning and when we got home he got a low fever. We monitored it and it gradually went down over a four hour period. Whew!!!

The counts have been fluctuating up and down. Diane is keeping track of them. He has gotten platelets a few times.

Today the counts were improved. The only issue is he has a samll Graft Versus Host Rash on his arms.

Please continue to pray for us!

July third around 4:30 AM I was in a deep sleep in our room when the door was pushed open and John called out and then collapsed to the floor in the doorway. I jumped up and called out “JOHN!” Diane and I jumped to our feet and rushed over to find John on his back on the floor in the doorway moaning and gasping with fast short breathes. I placed my hand on his chest and we asked him what was wrong. He said he was having chest pain and difficulty breathing.

After a moment of evaluating him I said OK we better go into the hospital. Diane suggested calling the ambulance. After seeing John was not totally passing out and blue I said no I will take him in. Diane got Jewelia’s car and pulled it around to the front. I helped John up off the floor and then down the steps and into the car. We left within five minutes of waking. As he calmed down and began to breathe normally it was obvious he was feeling better and more relaxed. I said, “John it seems like you are feeling better. Would you like for me to turn around and take you back home?” He said, “Yeah, but we probably better go get things checked out.” We were at the hospital by 4:50AM and I wheeled him up to the sixth floor.

Diane had called and let them know John was on his way and they had a room ready. They began their work and I went to park the car. When I got back up to the room Diane had gotten there. The doctor was running through all the standard questions and the nurses were scurrying about hooking up stuff and drawing samples.

During the morning and day they drew blood cultures, XRayed his chest, ran EKG, did ultrasound, and several other things that I can’t remember now. Everything came back within acceptable levels of tolerance. Of course John was admitted for observation but he gets to come home today.

Live Strong!

John’s admission lasted from Sunday until Tuesday, just 3 days. His fever never returned. He has been feeling “sick” ever since. He has a cough, but no chest congestion. He received more platelets yesterday. He had today off and goes back in tomorrow. The plan is to go ahead with the “boost” next Wednesday.

John had to be admitted today for fever. He has felt sick for a couple of days and came down with the fever this morning. This is so unfortunate because it is important he stays well for what is coming up on July 6. I don’t know how he has come down with something again. We try to be so careful. No visitors, frequent hand washings etc.

We received back more results from the bone marrow biopsy. It confirmed that John is in remission with no signs of cancer. His white cells are 97% engrafted. That means his bone marrow is making 97% of his white blood cells. There is a 3% margin of error.
John has partial engraftment failure. I’ll try to simplify this as much as I can. When John had the intense radiation back last year in September and October it was to kill not only the Leukemia cells, but his bone marrow as well. After the treatment he was transplanted with his donor’s bone marrow. He had a period of time where he didn’t have an immune system at all. He wasn’t producing white blood cells, red blood cells or platelets. He had to have many transfusions of blood and platelet. You may remember he was getting several transfusions of blood and platelets a day, the Red Cross ran short of platelets and we made a post requesting donations. The first thing to recover after bone marrow transplant is the white blood cells. John’s donor marrow started producing these. Then his own old marrow started producing his red blood cells. To have both marrows functioning is normal for a few weeks. By day 100 a full transition should occur with the donor marrow producing white cells (wbc), red blood cells (rbc) and lastly platelets. It is now 8 months post-transplant and for some unknown reason both marrows are still functioning. The donor marrow making wbc and his old marrow making the rbc and neither is making the platelets. Consequently, he needs a couple platelet transfusions a week. Engraftment failure occurs in less than 5% of patients.

The plan for now is to give him a “boost” of more donor cells on July 6. The 28 yr old donor has agreed to be reharvested on
July 5. Most of the T-cells will be removed to reduce the risk of graft-vs-host disease which has given him problems in the past. The hopes are that the boost will reinforce the donor cells and eventually the donor marrow will be the only one functioning. The fear is the old marrow would come back and start producing the white cells again which could be devasting. The white cells are what caused Leukemia. A blood borne cancer can be much hard to treat than a solid mass cancer which is all contained. The cancer cells in the blood can be so evasive.

I hope I have explained that well. Please pray that John will recover quickly and be able to come home soon. Pray also the donor will be able to go thru the harvesting process without much pain. I pray that God would bless this man for his incredible unselfishness of going through all this for a stranger.

correspondwithme@gmail.com

t was incredibly stressful today. John had a bone marrow biopsy done to check and see if he has relapsed and also check on his engraftment. I about had myself convinced he had relapsed so, it has not been a restful week for either Richard or I. Well, praise God, he hasn’t relapsed. The intial finding are the the donor marrow is making his white blood cells and his own marrow is making his red blood cells. I’m not sure how this can be happening since the last time he was checked he was 100% engrafted with the donor’s marrow. The thing is he has never switched over bloodtype which he was supposed to do at most by day 100 and now it is over day 270. Of course, they don’t know why this has not occurred. They also found that his bone marrow is “fatty” and having all that fat in there can prevent the marrow from being able to function properly. This can happen from being on steroids a long time. So, his marrow is very sluggish, which is why the plan is to go back to his donor and harvest him some more and give John a boost. These are just the very intial findings, we will find out more tomorrow and then more when tests come back next week. He has been having a lot of troubles with his pressure and of course, no one knows why. They’ve again increased his Dynacirc and added another b/p med yesterday. Its back to the hospital tomorrow for more i.v. meds, another long day there. We’ve been there everyday all week. Hopefully soon he’ll have a day off. Hopefully the scheduled boost will be all he needs.

correspondwithme@gmail.com

Richard left this morning to go to a baseball game with his Dad in Montgomery. I was an emotional wreck last night. When I finally got to sleep, I slept until 12:00 this afternoon. Fortunately, John came and got his pill case and stayed current with his meds. I finally got up and took a shower and was drying my hair when I heard a very loud thumping sound and John yelling. I knew right away he fell down the steps. I was so scared because of his platelet situation.

Platelets provide the clotting action of the blood. A normal count is between 150,000 and 300,000. Above that and your blood doesn’t flow properly. Below it and you will bruise very easily and can bleed to death by a injury that others would have little problems with. Wednesday his count was at 5000, Thursday it was 6000 and he was transfused with a unit of platelets. Yesterday his count was at 29,000, which is good for him in comparison with how it usually runs.

So, when I found him at the bottom of the steps I thought of all the internal injuries he could have and I began to panic. I had no idea how badly he was injured, but I knew it was paramont that he get into the hospital for a platelet transfusion. Deborah was there and was a tremendous help. She kept asking me if I wanted her to call 9-1-1. She got me the portable phone and I called and explained the situation. In less than 5 minutes the ambulance was here. By this time John had calmed down and was talking on the phone to a stem cell doctor at Children’s. He was in a lot of pain and he took a Morphine tablet. The parametics took his B/P etc and I explained his medical history, got him his mask and he was on his way. I had to get dressed and then Deborah and I followed in the car. When we got there he was down in the Emergency Room, but he was transferred to the Stem Cell Clinic because that is the stem cell patient’s emergency room. His platelets dropped almost in half since yesterday and his count was at 16,000. He was sent down to CT scan because of the large goose egg on his head. John said he hit it on 3 steps on his way down. The CT showed no damage and he was checked over and was given 2 units of platelets. The second unit was very full, so it was more like 2 1/2 units. We got home around 7:45pm. John loves the steak and shrimp at Kobe’s Resterant and I had called ahead and picked it up on the way home.

By this time Richard was home and that helped. It just makes me feel stronger when he is around. He is such a rock, so dependable. In the past 3 years of this fight I’ve seen a lot of husbands leave because it was too much for them. Through all the uncertainty of life, one thing I don’t need to worry about is Richard abandoning us.

John is now up in his room eating his Kobe. He is a mass of bruises and has a large lump on his head. The nurses said it looks like he got in a fight. He is in good spirits. He is amazing. He is staying upstairs tonight. No stairs for him. We have a two-way radio in case he needs something.

It is so hard to get things done around the house. Just the normal everyday irritating stuff. Feeding the dog, cleaning the house, washing clothes and the meals, meals, meals. I’m going to start budgeting for household help. This is too much to do.

I’m thankful that today hasn’t turned out much worse as it could have. Once I settled down, I’ll probably have a good cry. For now, I’m going to go eat some Chinese take-out.
Thanks for listening.

Monday May 23rd the doctors started the new medicine Ritoximab. It is supposed to kill the B cells that are killing the cells John is making. John did ok during the infusion but he did get a pinching in his throat so they slowed the infusion. They gave him 800ml of fluid before the infusion. They gave him 800ml of fluids during the infusion. Then they gave him 800ml of fluid after the infusion. He swelled up like a balloon.

Of course all these fluid changes affected his cyclosporine drug levels. I am sure it affected the level of all the antioxidants and other essentials in his body. His feet were really swollen and he had difficulty breathing.

They gave him some lasix!

On Tuesday they gave him more lasix and were concerned with his levels. He was there a long time.

On Wednesday his grandparents were here and spent all day at the clinic with him. It was so good to see them. It had been so long since they were allowed to come down. Wednesday they gave him IVG (Immuno Globulin) and lasix. This was to counter the effect of the ritoximab.

They cut back on the steroids because he has been having horrific intestinal gas. It is a very distinct and horrible smell. They have given him some other drug to help with the “floral” of the digestive system.

Sorry my posts are so sporadic now. Mi Vida Loco!

John’s graduation day!

John had to go in to the clinic Monday May 23rd (Our 23rd Wedding Anniversary), and Tuesday May 24th, and Wednesday May 25th, and Thursday May 26th. Each day it seemed something came up that required us to stay longer than planned. By Thursday he was not feeling well at all. He did not get home from the clinic until late in the afternoon and was shaky and frail. He was not able to attend his graduation ceremony.

I left work five minutes early and picked up a carrot cake at Edgar’s. I then went to the church where the commencement was to be held. I found everyone in the fellowship hall putting on their caps and gowns and one of the school administrators was checking the attendance. When she was done I let her know what was up and she arranged for me to get the tassel, diploma, gift, and a program to take home. Everyone was busy rushing about and lining up for pictures. People were coming in late and looking for direction. I spoke to John’s friend Sam and when he learned John was not going to make it his countenance sank.

After a short while I could not endure it any longer. I was supposed to call home but I could not stay to use the phone. I began to weep. I cried and cried. I rushed out to my car and drove away in tears; I went the wrong way on the road and went a couple miles out of my way. But I did not care because I was crying like a baby.

I feel three years of our lives has been stolen and replaced with endless suffering and misery with no end in sight. I struggle for joy but truthfully there is little joy. I forced myself to settle down and put on a brave front as the plan was to now have a small graduation ceremony at home with the grand parents.

We ate barbeque and sides and gave John some gifts. We presented the diploma to him and took lots of pictures. My dad is retired but his career was a university professor. He has been to numerous graduations. He spoke briefly about commencement and how High School Commencement was not the end but the beginning of the learning for the rest of your life. It was well said! Then we ate Edgar’s carrot cake and printed pictures. It was nice and intimate. It was family making memories.

But my heart is broken and I am soul sick through my emotions and mind. And possibly even to my will. I feel like I am slipping away and lost. Lost beyond rescue! I feel victimized at every turn now. Whether this victimization be real or simple misperception I cannot tell now. I try not to focus on what has been taken from me but I feel the loss so deeply and fear the end is not in sight. I remember others that have lost so much more. Is this the great tribulation?

John’s class at Hope Christian School is having their Commencement Services on Thursday May 26th. Please pray for us that John will be able to walk with his class at Graduation. We have missed 3 years of high school plays, sporting events, and the prom. He has had to read and study and take tests but was not able to participate in the fun social or team aspects of his high school years. It would mean so much to have him simply walk on that stage and get the diploma.

Right now his counts have still not come back up. Platelets on Friday morning were 9K. If they don’t respond this week then the doctors want to use a rixotoxin drug. I know that is not spelled right but I can’t remember the exact name. It is a drug that kills your antibodies in your blood. This should kill the antibody that is killing his platelet cells. But unfortunately it will kill good antibodies as well. If they put him on it I am afraid they will not let him participate in commencement even with a mask on.

Not knowing what is happening from minute to minute or day to day is one of the worst feelings experienced during the cancer/transplant fight. We can plan but frequently the plans get changed at the last minute. Lots of times we just did not plan. And when it comes to money we have to just plan that we will make payments for how ever long it takes. There is no way to budget for all the drugs and visits. CHSYS is good about billing us and letting us pay on the easy payment plan. But it is extremely difficult to correlate their bills to a particular service that was performed. CHSYS is also quick to use a collections agency if a bill gets overlooked or does not get paid. This is especially true for us because we pay all our bills electronically and never write checks for bills in the mail. We don’t even get many bills in the mail. Our bank statement is even electronic. Mostly what we get from the USPS are unsolicited advertisements and junk mail. Sometimes mail from the USPS does not get looked at for days. I wonder if other people have a similar perspective on getting anything of value in the USPS mail. I imagine that only 5% of the stuff we get is of value to us. That number might be high but I am not really sure. Maybe if I subscribe to more magazines or a book club the percentage of worth would be greater.

John went outside with out a mask on for a few minutes yesterday so we could take pictures to send out in the graduation announcements. It must have been nice for him. He has not been out without a mask for months. I am glad so glad we got the picture. I think they turned out well.

Last week a test that was run to determine if John had an antibody that was killing his platelet cells came back positive. His body was killing his cells again. The action taken was to increase the cyclosporine levels and the steraoid levels. The steroid will be increased for 2 weeks. If this does not raise his levels enough to overcome the antibody then they will use another drug that is supposed to kill the antibodies.

John also had his GVHD rash get worse last week and they changed the steroid cream he is using. The new one seems to have helped a lot.

John’s older sister came home from college for a few days. It is hard to believe she is a senior now. The medicines John is on cause him to shake and tremor and tremble. When he was at the dinner table Tuesday he was shaking a lot. Jewelia asked him if he was cold. She has been kept from so much of our suffering while she was away at the university.

Our family thinks of Rachel and her family everyday. It is hard to believe it has been a year since her passing on May 3^rd 2004. We have been through so much in the past year that it seems like years have passed and yet at the same time it seems like yesterday. John was diagnosed with the relapse a month after the funeral for Rachel. Seems we have lived a decade in the months that followed. Many many times we thought John might go with Rachel. Thank God and everyone for our son and for Rachel and her family. We have seen too many beautiful loving children and families that are fighting so desperately to beat the odds and survive the cancers that consume their bodies and the bodies of their loved ones. And that are struggling with the faith to see beyond. Remember us all in your prayers. Pray for comfort for Marla, Richard, Bubba, and their families and for our family as we try to make our way back to healthy, happy living. None of us will ever be the same. But that does not limit what God can do in, through, and for us.

Who can know the mind of God?

Who can fathom the depths of His understanding?

Who can question the perfection of His Will and Ways?

The following exert from the book of Job is Jesus enlightening Job about who Jesus is and who Job is!

Then the LORD answered Job out of the whirlwind and said,
“Who is this that darkens counsel
By words without knowledge?
“Now gird up your loins like a man,
And I will ask you, and you instruct Me!
“Where were you when I laid the foundation of the earth?
Tell Me, if you have understanding,
Who set its measurements? Since you know.
Or who stretched the line on it?
“On what were its bases sunk?
Or who laid its cornerstone,
When the morning stars sang together
And all the sons of God shouted for joy?
“Or who enclosed the sea with doors
When, bursting forth, it went out from the womb;
When I made a cloud its garment
And thick darkness its swaddling band,
And I placed boundaries on it
And set a bolt and doors,
And I said, ‘Thus far you shall come, but no farther;
And here shall your proud waves stop’?

“Have you ever in your life commanded the morning,
And caused the dawn to know its place,
That it might take hold of the ends of the earth,
And the wicked be shaken out of it?
“It is changed like clay under the seal;
And they stand forth like a garment.
“From the wicked their light is withheld,
And the uplifted arm is broken.
“Have you entered into the springs of the sea
Or walked in the recesses of the deep?
“Have the gates of death been revealed to you,
Or have you seen the gates of deep darkness?
“Have you understood the expanse of the earth?
Tell Me, if you know all this.
“Where is the way to the dwelling of light?
And darkness, where is its place,
That you may take it to its territory
And that you may discern the paths to its home?
“You know, for you were born then,
And the number of your days is great!
“Have you entered the storehouses of the snow,
Or have you seen the storehouses of the hail,
Which I have reserved for the time of distress,
For the day of war and battle?
“Where is the way that the light is divided,
Or the east wind scattered on the earth?
“Who has cleft a channel for the flood,
Or a way for the thunderbolt,
To bring rain on a land without people,
On a desert without a man in it,
To satisfy the waste and desolate land
And to make the seeds of grass to sprout?
“Has the rain a father?
Or who has begotten the drops of dew?
“From whose womb has come the ice?
And the frost of heaven, who has given it birth?
“Water becomes hard like stone,
And the surface of the deep is imprisoned.
“Can you bind the chains of the Pleiades,
Or loose the cords of Orion?
“Can you lead forth a constellation in its season,
And guide the Bear with her satellites?
“Do you know the ordinances of the heavens,
Or fix their rule over the earth?
“Can you lift up your voice to the clouds,
So that an abundance of water will cover you?
“Can you send forth lightnings that they may go
And say to you, ‘Here we are’?
“Who has put wisdom in the innermost being
Or given understanding to the mind?
“Who can count the clouds by wisdom,
Or tip the water jars of the heavens,
When the dust hardens into a mass
And the clods stick together?
“Can you hunt the prey for the lion,
Or satisfy the appetite of the young lions,
When they crouch in their dens
And lie in wait in their lair?
“Who prepares for the raven its nourishment
When its young cry to God
And wander about without food?

“Do you know the time the mountain goats give birth?
Do you observe the calving of the deer?
“Can you count the months they fulfill,
Or do you know the time they give birth?
“They kneel down, they bring forth their young,
They get rid of their labor pains.
“Their offspring become strong, they grow up in the open field;
They leave and do not return to them.
“Who sent out the wild donkey free?
And who loosed the bonds of the swift donkey,
To whom I gave the wilderness for a home
And the salt land for his dwelling place?
“He scorns the tumult of the city,
The shoutings of the driver he does not hear.
“He explores the mountains for his pasture
And searches after every green thing.
“Will the wild ox consent to serve you,
Or will he spend the night at your manger?
“Can you bind the wild ox in a furrow with ropes,
Or will he harrow the valleys after you?
“Will you trust him because his strength is great
And leave your labor to him?
“Will you have faith in him that he will return your grain
And gather it from your threshing floor?
“The ostriches’ wings flap joyously
With the pinion and plumage of love,
For she abandons her eggs to the earth
And warms them in the dust,
And she forgets that a foot may crush them,
Or that a wild beast may trample them.
“She treats her young cruelly, as if they were not hers;
Though her labor be in vain, she is unconcerned;
Because God has made her forget wisdom,
And has not given her a share of understanding.
“When she lifts herself on high,
She laughs at the horse and his rider.
“Do you give the horse his might?
Do you clothe his neck with a mane?
“Do you make him leap like the locust?
His majestic snorting is terrible.
“He paws in the valley, and rejoices in his strength;
He goes out to meet the weapons.
“He laughs at fear and is not dismayed;
And he does not turn back from the sword.
“The quiver rattles against him,
The flashing spear and javelin.
“With shaking and rage he races over the ground,
And he does not stand still at the voice of the trumpet.
“As often as the trumpet sounds he says, ‘Aha!’
And he scents the battle from afar,
And the thunder of the captains and the war cry.
“Is it by your understanding that the hawk soars,
Stretching his wings toward the south?
“Is it at your command that the eagle mounts up
And makes his nest on high?
“On the cliff he dwells and lodges,
Upon the rocky crag, an inaccessible place.
“From there he spies out food;
His eyes see it from afar.
“His young ones also suck up blood;
And where the slain are, there is he.” 1Then the LORD said to Job,
“Will the faultfinder contend with the Almighty?
Let him who reproves God answer it.”
Then Job answered the LORD and said,
“Behold, I am insignificant; what can I reply to You?
I lay my hand on my mouth.
“Once I have spoken, and I will not answer;
Even twice, and I will add nothing more.”

Then the LORD said to Job,
“Will the faultfinder contend with the Almighty?
Let him who reproves God answer it.”
Then Job answered the LORD and said,
“Behold, I am insignificant; what can I reply to You?
I lay my hand on my mouth.
“Once I have spoken, and I will not answer;
Even twice, and I will add nothing more.”

Faultfinding is not Agape, and faultfinding is not righteous judgement, and faultfinder’s vision is clouded. Faultfinding is not delegated by any righteous authority. Faultfinder repent! You have hope in repentance.

Then the LORD answered Job out of the storm and said,
“Now gird up your loins like a man;
I will ask you, and you instruct Me.
“Will you really annul My judgment?
Will you condemn Me that you may be justified?
“Or do you have an arm like God,
And can you thunder with a voice like His?
“Adorn yourself with eminence and dignity,
And clothe yourself with honor and majesty.
“Pour out the overflowings of your anger,
And look on everyone who is proud, and make him low.
“Look on everyone who is proud, and humble him,
And tread down the wicked where they stand.
“Hide them in the dust together;
Bind them in the hidden place.
“Then I will also confess to you,
That your own right hand can save you.

Now Jesus gives Job more understanding of who Jesus is and who Job is.

“Behold now, Behemoth, which I made as well as you;
He eats grass like an ox.
“Behold now, his strength in his loins
And his power in the muscles of his belly.
“He bends his tail like a cedar;
The sinews of his thighs are knit together.
“His bones are tubes of bronze;
His limbs are like bars of iron.
“He is the first of the ways of God;
Let his maker bring near his sword.
“Surely the mountains bring him food,
And all the beasts of the field play there.
“Under the lotus plants he lies down,
In the covert of the reeds and the marsh.
“The lotus plants cover him with shade;
The willows of the brook surround him.
“If a river rages, he is not alarmed;
He is confident, though the Jordan rushes to his mouth.
“Can anyone capture him when he is on watch,
With barbs can anyone pierce his nose? 1″Can you draw out Leviathan with a fishhook?
Or press down his tongue with a cord?
“Can you put a rope in his nose
Or pierce his jaw with a hook?
“Will he make many supplications to you,
Or will he speak to you soft words?
“Will he make a covenant with you?
Will you take him for a servant forever?
“Will you play with him as with a bird,
Or will you bind him for your maidens?
“Will the traders bargain over him?
Will they divide him among the merchants?
“Can you fill his skin with harpoons,
Or his head with fishing spears?
“Lay your hand on him;
Remember the battle; you will not do it again!
“Behold, your expectation is false;
Will you be laid low even at the sight of him?
“No one is so fierce that he dares to arouse him;
Who then is he that can stand before Me?
“Who has given to Me that I should repay him?
Whatever is under the whole heaven is Mine.
“I will not keep silence concerning his limbs,
Or his mighty strength, or his orderly frame.
“Who can strip off his outer armor?
Who can come within his double mail?
“Who can open the doors of his face?
Around his teeth there is terror.
“His strong scales are his pride,
Shut up as with a tight seal.
“One is so near to another
That no air can come between them.
“They are joined one to another;
They clasp each other and cannot be separated.
“His sneezes flash forth light,
And his eyes are like the eyelids of the morning.
“Out of his mouth go burning torches;
Sparks of fire leap forth.
“Out of his nostrils smoke goes forth
As from a boiling pot and burning rushes.
“His breath kindles coals,
And a flame goes forth from his mouth.
“In his neck lodges strength,
And dismay leaps before him.
“The folds of his flesh are joined together,
Firm on him and immovable.
“His heart is as hard as a stone,
Even as hard as a lower millstone.
“When he raises himself up, the mighty fear;
Because of the crashing they are bewildered.
“The sword that reaches him cannot avail,
Nor the spear, the dart or the javelin.
“He regards iron as straw,
Bronze as rotten wood.
“The arrow cannot make him flee;
Slingstones are turned into stubble for him.
“Clubs are regarded as stubble;
He laughs at the rattling of the javelin.
“His underparts are like sharp potsherds;
He spreads out like a threshing sledge on the mire.
“He makes the depths boil like a pot;
He makes the sea like a jar of ointment.
“Behind him he makes a wake to shine;
One would think the deep to be gray-haired.
“Nothing on earth is like him,
One made without fear.
“He looks on everything that is high;
He is king over all the sons of pride.”

Then Job answered the LORD and said,
“I know that You can do all things,
And that no purpose of Yours can be thwarted.
‘Who is this that hides counsel without knowledge?’
“Therefore I have declared that which I did not understand,
Things too wonderful for me, which I did not know.”
‘Hear, now, and I will speak;
I will ask You, and You instruct me.’
“I have heard of You by the hearing of the ear;
But now my eye sees You;
Therefore I retract,
And I repent in dust and ashes.”

Well Job repented and got back right with God and let Jesus be Jesus and Job be Job and Jesus blessed him.

Job was not the only one! He was not alone in having to be corrected by Jesus. Jesus addressed Job’s friends as well! We are all in this together.

It came about after the LORD had spoken these words to Job, that the LORD said to Eliphaz the Temanite, “My wrath is kindled against you and against your two friends, because you have not spoken of Me what is right as My servant Job has.
“Now therefore, take for yourselves seven bulls and seven rams, and go to My servant Job, and offer up a burnt offering for yourselves, and My servant Job will pray for you For I will accept him so that I may not do with you according to your folly, because you have not spoken of Me what is right, as My servant Job has.”

Be careful my friends that we don’t misrepresent Jesus during our time of trial, enduring with the joy of knowing the Holy Spirit is the first portion of our inheritance, Jesus is our inheritance to come, everything that is seen on the earth in our lives is temporary, and Jesus is the Supreme Authority that greatly suffered and gave His life that we would be “accepted” and arose in victory from the grave that we might choose to receive His gift of eternal life in the presence of His glory.

So Eliphaz the Temanite and Bildad the Shuhite and Zophar the Naamathite went and did as the LORD told them; and the LORD accepted Job.
The LORD restored the fortunes of Job when he prayed for his friends, and the LORD increased all that Job had twofold.
Then all his brothers and all his sisters and all who had known him before came to him, and they ate bread with him in his house; and they consoled him and comforted him for all the adversities that the LORD had brought on him. And each one gave him one piece of money, and each a ring of gold.
The LORD blessed the latter days of Job more than his beginning; and he had 14,000 sheep and 6,000 camels and 1,000 yoke of oxen and 1,000 female donkeys.
He had seven sons and three daughters.
He named the first Jemimah, and the second Keziah, and the third Keren-happuch.
In all the land no women were found so fair as Job’s daughters; and their father gave them inheritance among their brothers.
After this, Job lived 140 years, and saw his sons and his grandsons, four generations.
And Job died, an old man and full of days.

My dear brothers and sisters, Jesus has never ever done anything but good for me and my family. Any and all failure in my life has been totally because of me and my nature. My salvation has always and will only forever be a gift from Jesus…The God of Creation…The God of the Universe…The One True and Living God! Thank you for your love, support, forgiveness, and patience during the past year of extreme heartache and anxiety. I have learned and seen so much about Jesus and God’s will. But I still am so wanton and lacking!”

Isaiah 40 The Greatness of God

“Comfort, O comfort My people,” says your God.

“Speak kindly to Jerusalem; And call out to her, that her warfare has ended, That her iniquity has been removed, That she has received of the LORD’S hand Double for all her sins.”

A voice is calling,
“Clear the way for the LORD in the wilderness; Make smooth in the desert a highway for our God.”

“Let every valley be lifted up, And every mountain and hill be made low; And let the rough ground become a plain, And the rugged terrain a broad valley;

Then the glory of the LORD will be revealed, And all flesh will see it together; For the mouth of the LORD has spoken.”

A voice says, “Call out.” Then he answered, “What shall I call out?”
All flesh is grass, and all its loveliness is like the flower of the field.

The grass withers, the flower fades, When the breath of the LORD blows upon it; Surely the people are grass.

The grass withers, the flower fades, But the word of our God stands forever.

Get yourself up on a high mountain, O Zion, bearer of good news, Lift up your voice mightily, O Jerusalem, bearer of good news; Lift it up, do not fear Say to the cities of Judah, “Here is your God!”

Behold, the Lord GOD will come with might, With His arm ruling for Him Behold, His reward is with Him And His recompense before Him.

Like a shepherd He will tend His flock, In His arm He will gather the lambs And carry them in His bosom; He will gently lead the nursing ewes.

Who has measured the waters in the hollow of His hand, And marked off the heavens by the span, And calculated the dust of the earth by the measure, And weighed the mountains in a balance And the hills in a pair of scales?

Who has directed the Spirit of the LORD, Or as His counselor has informed Him?

With whom did He consult and who gave Him understanding? And who taught Him in the path of justice and taught Him knowledge And informed Him of the way of understanding?

Behold, the nations are like a drop from a bucket, And are regarded as a speck of dust on the scales;
Behold, He lifts up the islands like fine dust.

Even Lebanon is not enough to burn, Nor its beasts enough for a burnt offering.

All the nations are as nothing before Him, They are regarded by Him as less than nothing and meaningless.

To whom then will you liken God?
Or what likeness will you compare with Him?

As for the idol, a craftsman casts it, A goldsmith plates it with gold, And a silversmith fashions chains of silver.

He who is too impoverished for such an offering Selects a tree that does not rot; He seeks out for himself a skillful craftsman To prepare an idol that will not totter.

Do you not know? Have you not heard? Has it not been declared to you from the beginning? Have you not understood from the foundations of the earth?

It is He who sits above the circle of the earth, And its inhabitants are like grasshoppers, Who stretches out the heavens like a curtain And spreads them out like a tent to dwell in.

He it is who reduces rulers to nothing, Who makes the judges of the earth meaningless.

Scarcely have they been planted, Scarcely have they been sown, Scarcely has their stock taken root in the earth, But He merely blows on them, and they wither, And the storm carries them away like stubble.

“To whom then will you liken Me That I would be his equal?” says the Holy One.

Lift up your eyes on high And see who has created these stars, The One who leads forth their host by number,
He calls them all by name; Because of the greatness of His might and the strength of His power, Not one of them is missing.

Why do you say, O Jacob, and assert, O Israel, “My way is hidden from the LORD, And the justice due me escapes the notice of my God"?

Do you not know? Have you not heard? The Everlasting God, the LORD, the Creator of the ends of the earth
Does not become weary or tired His understanding is inscrutable.

He gives strength to the weary, And to him who lacks might He increases power.

Though youths grow weary and tired, And vigorous young men stumble badly,

Yet those who wait for the LORD Will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.

I took John into the clinic Sunday and his counts had come up. We were relieved. He discussed the problem sleeping and how he had been feeling with doctor. Thye decided to stop the sleeping aid he was on and now he is feeling better. Guess it was making him feel groggy and stoned all day.

We are about to leave for the clinic right now. I will drop him off and go to work and Diane will pick him up. Sunday we only had to stay for 90 minutes because he did not have to get fluids. Hope today goes as well. He has had a good appetite. Basically the steroids make him hungry all the time. He is having joint pain and the doctor relates that to steroids.

I am thankful to all my co workers for coming to work and trying to keep the company successful. We would not have group insurance if we did not have agroup and we have used the insurance more than most. We are getting closer to the lifetime cap of $1 million for John. After that he will have Medicaid. We are looking into a plan from the state of Alabama for people that have exhausted their group coverage also. It is the AHIP plan.

John got out of the hospital the day before Easter after a stay of about 38 days. The hospitalization was scary. He lost so much weight and could/would not eat and was very sick. His cell production seemed to have stopped. Doctors ran test after test and were very concerned and seemed confused at times. They pressed for lung biopsy. I did not feel right about it and refused. They persisted in the pressure and John relented and Diane agreed. I was still opposed. It was a very difficult time and I know I nearly lost it many times during the Lenten season.

We continued to pray and before they could schedule surgery they determined the problem was antibodies John was creating killing his own cells he was making. The treatment was to use steroids. Biopsy surgery was not needed. John got better quickly and got to go home.

Continue to pray!

Why continue to pray?

Did you ever work for or with someone that did not let you participate in the decision making process? Someone that was like an Ogre or Overlord or Dictator. Barking out orders and come hell or high water it was their way or the highway?

God is not like that! Never has been and never will be! Prayer is the way He gave us to participate in the process. To let our voice be heard and our desires known. Pray Pray Pray! Jesus wants you to pray continually with all manner of prayers. Pray with prayers of petition, and pray prayers of worship, and pray prayers of faith, and pray prayers of repentance, and pray prayers of forgiveness, and pray prayers of intercession, and pray prayers of thanks!

Of course God knows what you are going to pray before you pray it. You have known things about people’s choices before they made them. But if we do not take a chance we cannot ever expect to gain any reward. Jesus loves us and gave the most precious gift to us we could ever receive but if we do not pray and receive it then we miss out on it.

Now sometimes we let God know our position on issues and we do not get what we asked. Sometimes because He is holy and sometimes cause we ask for His will and not ours to be done. Jesus asked to have the burden of our sin removed from Him but at the same time He asked for the Fathers will to be done and since it was the Fathers will to give the Son in payment and sacrifice for us Jesus had to endure it.

Rachel passed almost a year ago and we asked for healing and restoration over and over again. We asked for comfort and the Lord’s will to be done also. Jesus knew what was best and I am confident in Him but now I guess we all have to endure it and continue to pray! Pray for Rachel’s family for strength of heart to endure and for the healing and restoration to be done in them now instead of in Rachel.

John has been going to the clinic three times a week. This week, if all goes well, he will only go twice. He went today (Monday), and he will go Friday. He hasn’t needed any blood products since April 8. His counts are staying steady for the most part. His platelets went down a little since Saturday, they are at 23K, I think, somewhere around there. Last week his red blood came up from 8.3 to 9.6 in two days! The doctor was ecstatic. She really thinks things are turning around for him.

He had some pancreas issues over the weekend. He was having some pain yesterday in his abdomen that radiated to his back. He took a couple Oxycodones and used the heating pad. He had less than 10 grams of fat yesterday. His fat intake is extremely low. We’re still tapering off the steroids weekly. They probably are the source of the problem. Pancreatitus is awful.

Other than occasional flare ups of problems with the pancreas, he is doing fine.

John’s back home. We got home around 1:00 this afternoon. Back on Sunday for a clinic visit.

Yes, John is back in the hospital. He woke up around 2:30 this morning with bad pancreatitus pains and took a Oxycodone and used the heating pad. An hour later the pain had worsened and he had another Oxycodone but they weren’t helping much. Richard took him in around 4:00am and they gave him Morphine. That helped. I just got home from the hospital, its 9pm, and he was pain free. The plans are to get him home first thing in the morning if he stays pain free. I think he will. He feels fine. The steroids can cause pancreatitus, but he needs to be on them for a variety of reasons. They are tapering him off of them slowly.

Diane

correspondwithme@gmail.com

I can’t express to you how wonderful it is to be able to give out good news for a change! John had an appointment today and we were there less than 2 hours! Yes! Less than 2 hours! He didn’t need any transfusions or fluids. How wonderful! He has been bruising easily because of being on the steroids, but he doesn’t need platelets, they are at 30,000. We would like to see them at 100,000, but one thing at a time! He doesn’t go back until Saturday. He has some aches and pains, but they are “ok” pains because they are from him starting to use his muscles again and being more active. His muscles need reconditioning. His doctor still hasn’t given Richard and I the “Ok” to go back to church. Too much sickness she says. We sorely miss the fellowship. It means so much to hear from people and know they are still praying. It will be good to be back socializing and worshipping again.

Sorry its been a while since we’ve posted. Things have slowed down here and improved a lot. John’s appointment today went well. He needed a liter of fluid because of elevated creatine levels. His WBC, RBC and platelets continue to either improve or at least hold steady. He hasn’t need a transfusion since before Easter! The doctors are very pleased with his progress. Since they isolated his sluggish count problem due to his body making antibodies against his WBC (neutraphils) and they started treating it with the steroids things have steadily improved. He is stronger than he has been for a long, long time. He rarely complains of nausea now. He’ll probably go to clinic at least 3 times this week. His next appt. is Wednesday.

People ask us “What’s next?” in John’s life. What is next is I believe John will be strengthened more and more and will go to the clinic less and less. I don’t know if he’ll be able to go to college this fall or not, but surely by next year. He is still weak and his immune system is very vulnerable. He has had a very slow and arduous recovery. He is walking more and the steps here in the house are becoming easier for him as time goes on. His feet are very swollen right now otherwise he would be able to do more aerobic exercises.

He still has the Graft vs Host rash and has to apply the steroids cream 3x’s daily and take the oral steroids. The steroids increase his appetite and he is gaining back some of the weight he has lost. He looks good. I still can’t get over all that curly hair. I’m trying to live life outside of the “hospital mentally". Someday, all these visits will be behind us and life won’t consist of one more hospital admission and one more clinic visit merged into the other. In some ways, when we are away from it all and he has some time off, I feel like a prisoner trying to get used to the outside world. My routine has been taken away, the confines are gone and I somehow feel inadequate. I have a hard time now just living and enjoying. I think soon, when John’s ready, I should go back to work. Do something stimulating and interesting. We’re all ready to move on. None more ready than John.

John came home on Saturday! Just in time for Easter. He was in for 37 days. Richard says John gave up living at home for Lent :~) He is doing much better. He had Easter off and didn’t have to go into the hospital. Today his labs were good. His WBC is 11,000. He will have to go in tomorrow for fluids just as a precaution to take care of the kidneys. He is drinking and eating a lot. Prednisone does that. I was so happy he didn’t have to go home on the liquid nutrition, TPN. His rash from the Graft vs. Host is better, but his skin is terribly dry and scaley. I need to take some pictures so we can post them. His hair grew back so curly! It looks like Greg from the Brady Bunch. We’re all breathing a lot easier now. We made it through this one.

A friend of mine was encouraging me the other day and what she said really helped. She said Easter is the time we celebrate Jesus rising again from the dead. This Easter can be a touchstone for us, symbolic of John rising in newness of the beginning of good health. Jesus can make him whole again. I’m holding onto this and praying it be so.

Looks like John may be coming home tomorrow, Saturday. I certainly hope so. He’s been in 36 days. He is eating now and off the i.v. nutrition, TPN. He still gets i.v. anti-nausea meds when he is having nausea, but I think we can handle that with oral meds at home. He is so ready to be out of there. His gallbladder seems to be just fine. His bilirubin levels are within high normal ranges. They suspect he had some type of blockage which caused elevated levels. He is a little unstable when he walks. He attributes that to some much time in the bed. He is still working daily with Physical Therapy.

His dad got him the new PSP game system yesterday. He enjoys that and it helps with the monotony.

Thank you for your prayers.

Diane

Here’s my email address if you want it: correspondwithme@gmail.com

John is doing better. He developed severe pancreatitus. He had to fast for several days. Yesterday he was allowed to chew on crushed ice and today he could have a low-fat diet. He was miserable because he is on the steroid Predisone which increases his appetite. Today he was doing much better. His pain from the pancreatitus was fairly severe over the weekend. Today it was determined he has some “sludge” in his gallbladder. He is on a new med to address that issue.

The steroid is treating the spots in the lungs, (Which have improved), the GVHD (graft vs host disease), and the antibody issue. John’s counts have always been low since transplant and no one had an explaination. It has been determined that he has been producing antibodies which have been attacking and destroying his white blood cells and probably the red cells and platelets as well.

We hope to have him out by Friday.

One month in-patient today.

Unfortunately, John has developed Graft verses Host Disease of the skin again. This time it is Grade 2, bordering on Grade 3, on a 1-4 scale. Last time it was Grade 1. The treatment for it this time is i.v. steroids for 2 weeks. If he improves well enough to go home then they will switch him over to oral steroids.

The good news in this is that the lung biopsy was cancelled. There is a pulmonary condition they were going to be testing for that occurs sometimes after transplant, and if he had it the treatment is the same as the GVHD. So, since he is going to be treated with the steroids anyhow the biopsy was canceled. I am so relieved. I think the delay that happened in allowing them to perform the biopsy was Divine. I think God had His Hand in all of this. I’m not saying He gave John the GVHD that prevented the biopsy, but somehow He has it all under control. I have stopped trying to figure God out in all of this. I just pray as He taught us to pray “Not my will but Your’s be done”.

Diane spent Sunday Night and stayed till Jewelia (John’s older sister) came to visit in the afternoon. Jewelia visited and went home to Atlanta. I went to visit John right after work. We had a bunch of laughs at the nurse’s expense about the “suicide watch.” His nurse was very good about defending her team but she laughed too. I like John’s new room better anyway. It has a better view and the nurses can actually here the audible alerts emitted by machines when they require attention.

John was getting red blood, TPN, and fluids when I got there. BP was very stable the whole time I was there and we talked a lot about MMORPGs. We have both had some fun adventures in them. I stayed till 9 and he wanted to sleep. He did not want his mom or me to spend the night. I told him when I left that I respected the fact that he was over 18 and normally he would not be around me very much. Told him I would treat him normally as much as he wanted, but he needed to tell me when he wanted me to not be around. He seemed to appreciate that and started a rant about his mom. Seems he thinks she does not ascribe the same respect. Guess since no one stayed with him the “suicide watch” …snicker…snicker… is officially over.

Pray that John will recover and they will not do lung biopsy on Thursday. I am still against it. I asked the doctor to write an order for John to be taken outside for 15 minutes everyday. He has not been outside in four weeks. She thought it was a good idea but I don’t think she made it an order.

Visited Hospital yesterday afternoon. Diane and I went to the hospital yesterday afternoon. We stayed until 6 when John wanted to sleep. We stopped and looked for movie John asked us to pick up on the way home and picked up a burger. Got home after 7 and a few minutes later nurse called us. She was very concerned because John had not been acting himself and said something dark and crazy to the nurse that transitioned to her at shift change. She said John told the other nurse he knew the pass codes to the utility closet and he could put bleach in his IV to eliminate his pain. She spoke to the resident doctor and they were implementing Suicide Watch and either Diane or I had to come up and stay with him. They were moving his room to the one next to the nurses’ station. The doctor got on the pone and said he was going to talk to John and he would call us back. I did not say a thing.

I learned that from Jesus. Jesus did not say a thing when He was being wrongly accused. He knew the drill. We have come to the point where the hospital staff is going crazy. They have always been nice to us and they also always seemed to be subjected to some extremes in politic nundination of fiefdoms. Resident called us back and said John denied saying that and he was not suicidal. Anyway John is now in room 660 and they put a small desk outside his door for the nurse to sit at. Of course the whole thing was a major over reaction to a narcotic influenced braggart attempt at dark humor. John is “not himself” when he continues to get morphine daily and drained from the lack of sleep and illness. If they want to do something about psychosis induced by their system of continual sleep interruption and deprivation they should address the issues with their methods and not move John down the hall.

Of course the psychologist came in to see John this morning and cleared him. The doctor was baffled by the overreaction of the staff. You know the nurses don’t work for the doctors and the cleaning people don’t work for the nurses and the doctors don’t work for the cleaning people. I am beginning to think they all work for ???hmmmmmmm……. None of them can seem to fix any part of the process they are apart of. Hospital staff still walk into the transplant unit all the time without washing. They walk right by me when I am washing my hands. They push the door open and walk right in. Guess they have an exemption. The IV pump was beeping the other day in John’s room when I called. He said it had been doing it for 45 minutes. I asked him why he did not call the nurse. He said the button fell on the floor. Hey people in the medical community that work at hospitals or clinics and use IV pumps that rely on the patient to provide message alerts to the medical staff. Your process is pathetic!!!!! Shame on you!!! You are supposed to be leaders and respected. Yet you bring shame on yourselves and endanger the people you are obligated to protect by your oath. Simply because your process method, which could easily be corrected, is pathetic.

John would not let me go u there last night cause I snore to loud. Diane went back. I told her to only stay for a couple of hours and then come home but she is stubborn. She is exhausted now cause John had another rough night.

If you are still reading this then I guess you might really care about it. Here is the latest. John has been having fever spikes again and still vomits. He has blood pressure swings. With the BP dropping to below 90/30. John had a CT Scan of his lungs again yesterday. The spots are still the same as the scan a week and a half ago. The doctor still wants to do the lung biopsy and it looks like they are going to do it on Thursday. I am still against it. I have asked John to get a second opinion from some other facility. Stuff like the suicide watch fiasco has done nothing but erode my confidence. Maybe we should go to Boston or Seattle. John and his mom are willing to do the biopsy. Diane is so worn down and exhausted I think she might be close to complete break down. I know I am. This is an awful grind emotionally and physically. My feeling when I saw John yesterday was that he is fading. Becoming opaque. Losing the fight. I attribute much of it to the infections and the narcotics and GVHD and the methods being used now.

John’s endoscopy yesterday showed no visual signs of graft-vs-host. The biopsy results for this will be back next week. One biopsy did show evidence of a bacterial infection. He also tested positive on a blood culture for another bacterial infection. Antibiotics have been changed as a result. He has been fever free for over 2 days now! His sense of humor has been sharp and he has been entertaining the staff greatly! My hopes are that he will be home by Sunday. The doctor says “a couple days". Its such a relief to see him doing better. He wanted to be alone last night, so I stayed home and got a good night’s sleep.

Thank you for your prayers!

Endoscope of John’s stomach was postponed till tomorrow(Thursday) because CHSYS did not have platelets for John this morning. His count this morning was 45K but they wanted some platelets on hand in case they goofed and he bleeds.

Spoke to John last night on the phone. He sounded weak. He told me he had a really rough day. He met with a respiratory specialist who reviewed his case and recommended John get the lung biopsy done. John thinks the procedures are scheduled for Thursday now.

I have been praying John will get better and not get the surgery. The doctors remain extremely concerned and say this is very rare for a patient like John. Something is attacking and destroying his immune system cells faster than he can make them. His fever went to 102.7 yesterday.

John told me he fell down. John had really low BP and they were pumping fluids fast to bring it up. He was deeply asleep and groggy and had to hurry to bathroom. He was weak from low blood pressure and the past two weeks. The IV pole was top heavy and John lost balance. He fell and the pole fell and the bag of fluid burst on the floor. Diane pulled the emergency cord and four nurses rushed into help so she got out of their way. John said it took a while to clean up the diarrhea and IV fluid. He also said they could not put the IV pole together again. Guess they will retire that one.

Diane called this morning and John is doing better. No coughing fits last night and fever never went over 100. Deb and I packed her some clothes, toiletries, and meds last night. Our friend Linda came and picked them up and brought them to the Hospital. Linda has been such a blessing to us. Guess Diane will be “inpatient” till she is comfortable with all the doctor consultations and I can relieve her.

Sunday a push was made by doctor for lung biopsy. This is a major surgery that we went through last summer for a result of “unspecified inflammation.” The surgeon wanted to delay so he could more thoroughly exam the records. Diane inquired about a Bronchoscope which is less traumatic. She was told the legions are not inside the bronchi. They are more external.

Diane and I made it known that we were not in agreement with the surgery and we would not sign for it but it was John’s decision since he is a young man and over 18. They pressed him hard to get it done and he said he wanted to talk to the surgeon. John has gotten very weak now. The doctors are “extremely concerned.” His fever hit 102.7 again today and he had bouts of abdominal pain and vomiting. The doctors can hear fluid in his right lung. He has coughing fits.

Since the doctor wanted more time they postponed the Endoscope. They are wanting to do that and the lung biopsy at same time so John does not have to get anesthesia twice.

I caught the stomach bug that was going around and had to stay home today. I knew I was getting weaker last week but continued to press by going to work and the hospital and not sleeping much. This is so hard! I slept 12 hours Saturday night and half the day yesterday. I sleep 12 hours last night and had nightmares and crying out in my sleep. I slept most of the day today and am ready for bed again.

Please pray for my mom and dad and Diane’s mom and dad. This is very hard for Grandparents too. My mom had to bring her sister to the airport yesterday and stopped in to see John. He asked her to stay. She was alone because my dad was not feeling well. He went into the doctor today and has to go back tomorrow for some tests. My mom went home to be with him. Diane’s mom had her birthday yesterday and when we called she was asleep cause she was ill also. Please pray for them!

Diane called a while ago and John’s blood pressure dropped to 90 over 30 or there about. This is a sign of septicemia or septic shock. He has been in the transplant unit for the past 19 days. It is a step down ICU unit and they can handle most things. But if they cannot get his BP under control he will be taken to the full blown ICU. They can do more complex things there.

Thank you for your prayers and support. Things are looking really bleak right now but we know God has us in His hands. And we pray Lord Thy Will be done. Not ours but Yours!

John is about 181.5 centimeters or 1.8 meters tall. That is about 5 feet 11 inches in the US. He has lost so much weight and is down to about 73 kilograms or 160 pounds. He was over 100 kilos in September before transplant. His arms and legs have become extremely thin. They look like a quadriplegics limbs. He seems to be improving some now.

He was given a new blood product yesterday. It is called Immunoglobulin. IVIG is a solution of globulins containing antibodies normally present in adult human blood. Globulins are simple proteins that provide immunity against disease. A protein is made up of several amino acids, which are the microscopic building blocks that make up all cells. IVIG is used as a temporary treatment to elevate platelet counts. Administration every 10 to 21 days is usually required to maintain adequate platelet counts. Response to treatment is usually seen in 8 days.

Each batch of IVIg is made of human plasma derived from pools of 3,000 to 10,000 donors. Because this product is developed from pooled blood samples of many different donors, it is theoretically possible that viruses or bacteria could be transmitted in the product. Since 1985, however, all products are tested for HIV and hepatitis. Immune Globulin comes in sterile solution and is administered intravenously. It is made in different strengths and sizes.

Can’t understand why Doctors have let John get so thin. Maybe it is protocol but it does not make since to me. I have been keeping my mouth shut and just trying to be supportive of John. I did speak directly to John about eating and moving around. He seems to be aware and cognizant of needing to press through discomfort but unwilling to pay the price.

They have an endoscope of his stomach scheduled for Monday morning. They will be looking for GVHD in the throat and stomach. They will collect some small tissue samples to study in the lab.

John appears to be improved today. He has not had a fever in over 27 hours! Last night he was craving barbeque so I went out to Full Moon Bar-B-Q on 25th street and got him some. He ate better than he has in days. Had a barbeque sandwich, french fries and some beans. Today he was NPO because of some ultra sounds he was getting, so he couldn’t eat until afternoon. He had a peanut butter sandwich and a repeat of the barbeque. That put my mind at rest.

The ultrasounds turned out well. No problems in abdomen or heart. Of course all cultures are negative. The Infectious Disease Team came in and met with him today. They said his doctor has done an excellent job looking for viruses, bacteria, etc. and they are racking there brains to deside what else to test for. They do want to give him a new medicine that comes from human blood that supplies antibodies and fights infections. Richard is going to have to write more about that because I didn’t catch it all.

Personally, my take on this is he has the same virus that we all did and it has hit him harder than us. I’m looking positively on the fact that he’s been fever free, in the 98’s, for over a day now. I hope that he will be released to come home soon. My hopes are by Monday. Being in the hospital is not good for him.

John is starting his third week of being inpatient in the Lowder Stem Cell Unit at CHSYS. He continues to run fevers off and on. He has had multiple cultures done that all turned out negative. He developed C-Diff as a result of all the antibiotics he has been given. But he is now clear and the gown and glove order has been lifted from his room. He continues to have anemic cell production in the blood. Thye continue to give him blood products. This is of great concern. Doctors suspect a virus is to blame but have not isolated it. John does not eat. He is getting very thin. He continues to have nausea with throat and stomach pain. He seems to be getting weaker.

GVHD is also a possibility. Doctor on rotation consulted with a gastro specialty doctor and me thinks they want to do a scope of his stomach. They also have been discussing a lung biopsy to see if they can determine the cause for the spots they see on his lungs.

Dr. Sande is requesting more cells from the bone marrow donor. This will be a peripheral collection. (Just taking blood from his arm). Then they will filter out the T-Cells and give the blood to John. Don’t know how soon that could be done.

John is suffering from boredom and fatigue as well as the sickness. If CHSYS does not kill him this time I will be surprised. They seem to be causing more harm than good this go round.

Diane and I are getting worn down again. Too much stress and uncertainty. Doctors do not want us to attend church or large gatherings of people. We have to stay away from possible infectious contagions. We listen to recorded messages and songs. And pray with friends on the phone. Our sleep has been poor and our schedules have caused us to eat the wrong things at the wrong times or not eat at all. We have been looking at a few homes for sale in our area and have tried to keep some positive normal life pursuits but it is hard. We are so soul sick we have difficulty focusing on the norm. These efforts have helped us keep a hopeful outlook towards our future. We are enduring! I am taking tomorrow off.

I pray no one ever has to go through this. I pray our struggles will make it so no one else has to experience this. I feel this is all in God’s hands now and between Him and John. I have more love for Jesus now than ever. He was wounded for our transgressions and bruised for our iniquity and by His stripes we were healed. He does not want anyone to go through this either.

No matter if you live to be 3 or 33 or 103 life is short! Suffering is but for a moment and you can’t take mammon with you when its time for you to go. Jesus lived to be 33 and He chose to take you and me. Will you choose to believe in Him and receive the Love He chose to give?

Tomorrow will be 14 days that John has been in the hospital. He keeps running low grade fevers. They haven’t gone above 101.5 since the weekend. He feels bad, but he wants to come home. He isn’t eating very well however. I’ve talked to them about letting him come home on pass for 4-5 hours, but they won’t approve that until his temp stays normal. During the day its either normal or around 99 and in the early morning hours it spikes to around 100.5-101. A throat culture came back positive today for something, I don’t remember what, but the doctor wasn’t concerned about it. She said it wouldn’t be the cause of his temp. All bacterial cultures have come back negative. The doctor seems to think he may have EBV, Mono, and the results for that will be in tomorrow. If it is that they will start him on the med for it. There is a severe shortage on this med she said, but they have some in their unit for the stem cell patients.

Today he had another bone marrow biopsy. There were no blast cells present and all looks ok. They are testing it to check on engraftment again. Results will be in next week. They are contacting the donor to harvest more stem cells to give him a boost. It is unusual to have to do this, but his counts are just so puny and are not coming up on their own. Even with the GMCSF they are not responding well, although this is probably due to the virus.

He wants to spend the night alone so I am at home. He is somewhat cantankerous this admission. I think he is just so sick and tired of it all already.

Thank you for your prayers. We are discouraged and tired. I could certainly use your words of encouragement.
My email address is correspondwithme@gmail.com

Diane

I spoke with John’s nurse this morning and found out his temp is 100.0. Still too high to come home. If it breaks today, and hopefully it will, the earliest he can come home is Friday. He has to go 48 hours with a temperature. He didn’t sleep well last night. Bad dreams. He sounds ok, but he is more than ready to come home. They are still thinking he has a virus that they haven’t tested for. He is on antibiotics, anti-viral meds and anti-fungal med for C-Diff. C-Diff is very contagious so he has to stay in his room and the staff has to wear isolation gowns and masks when they are with him. C-Diff is caused from high usage of antibiotics and causes diarrea and sometimes fever. It sould be under control very soon. I still can’t go up there. I think I’ll be able to this weekend. It sure is frustrating not being able to see him. His counts have really gone down. He has received platelets and blood since his admission. They think he will have no problem with his counts going back up once this is over.

John still has fever, it was 102 early this morning. He is throwing up this morning and had diarrea. I still can’t go up there. So discouraging. His white count was 1150 this morning, platelets 12,000. He is getting platelets today and he received blood over the weekend.

Fever over 102 and kept throwing up so we had to go inpatient last night. He is in room 663 getting fluid and IV antibiotics.

It is so obvious many of the care givers have never actually used or stepped through the admission process they are a part of. We have done it more than 2 dozen times. Every time they nag you about stuff you have to do. Nurses station all nagged me about going to admission. hmmmm…let me see……leave all our stuff out in the truck…..or haul it to admission and then up to the room……or just bring it to the floor and go through the process of sanitize wiping it all and drop it off at the room and then going down to admission to get the coding so the nurses can begin to bill the hell out of us and our insurer for every little butt wipe. Cordial they ain’t!!!

CHSYS admission process does not account well for multiple admission patients. Same questions…..same answers. Should just be has anything changed if so what?

Fever is still over 102 this morning. Fluids help him feel better. Diane still has to stay away. He has the iMac if you are on his friends/chat list.

John continues to have rashes. We are still using the crème on them. He still has nausea at times. We found out this week that he is still the old blood type. They attributed this in part to the blood transfusions he has gotten. Here is one doctor’s explanation via email response to things:

“You’re right- blood type has usually changed by day 100, but this can be dependent on a lot of things, including how many transfusions a patient had to receive during the post-transplant period. The average life span of a red blood cell is 120 to 150 days, so some of the red cells John made before his TBI/conditioning could still be hanging around. Also, the transfusions he has received are HIS blood type rather than his donor’s, so he has been getting new red blood cells of his old type. This won’t effect what is going on in his marrow in terms of blood cell production, which we know is 100% from his donor engraftment studies.
However, it will effect what we see in his peripheral blood, which is where we check blood type.

Re his counts: Yes, I was very glad to see that his WBC increased so much over the weekend. This is good! Successful engraftment requires functioning T lymphocytes. We know he has T lymphocytes now because of the graft versus host disease he had last week, and, although graft
versus host disease is a misdirected immune response, the presence of T cells may be boosting his graft a bit. Let’s hope so!”

Diane is sick. I dropped John off at the clinic this morning and a friend drove him home. He did not feel well this morning. He threw up when he got home and had swelling around his eyes. He has a fever of 100.6 now. Diane called and they said since his WBC count is good then he can stay home till it reaches 101. Then we have to go inpatient. He is asleep now.

Maybe he caught the cold Diane has.

John began having a small rash on his skin on Monday the 7th. He went in for a scheduled appointment on Tuesday the 8th. Dr. Sande diagnosed the rash as Graft Versus Host Disease level two of four.

They had been gradually decreasing the cyclosporine levels over the past couple of weeks. Cyclosporine is a T-cell inhibitor which aids in reducing rejection of donor cells. They increased the dosage again due to the GVHD. They also prescribe a steroid cream for the rash.

The steroid cream worked fast at reducing the rash in areas and in other areas the rash spread. Maybe these were areas that did not have cream applied.

John has a clinic appointment this morning and we should know a little better about the ability to control the GVHD. We have heard several conflicting opinions on the impact of GVHD on BMSCT patients. One has a positive twist to it. They say if a transplant patient develops a mild form of GVHD then the chances of beating cancer significantly increase. We also heard that any occurrence of GVHD is negative.

The way I understand it is the donor immune system that is now dominant in John’s body is attacking his organs because at the cellular enzyme level it kind of views them as foreign and a threat. If this cannot be controlled we are told the result is a horrific death. But we have been told lots of things. Seems to me in part what is going on is what was ordered within natural design. The stem cells in Johns body are repairing damaged organs, tissue, and cells the way they were designed. Occurs to me that lots of damage was done to John’s body over the course of the ALL therapies. There may even be some defects that were inherit in his body from birth. Seems to me the new stem cells are doing what they do. Now many factors might also suppress new cell production and only God knows them all. We have been giving John growth hormone shots at home every other day to stimulate cell production. Seems he does not make enough RBC, WBC, and platelets still.

As you can see our understanding of things is extremely limited and our ability to communicate John’s health and well being are severely limited. Wish I could say everything is great and progressing as men designed. But I do have a distinct impression that everything is in God’s hands now and they are progressing as He wills. John’s greatest struggle has always been between his flesh and his spirit with his soul in the balance. Sometimes it seems that if John ever yielded his spirit and soul to the Spirit of Jesus that all would be well with his body. And if he is set at one (has peace) with Jesus then it does not matter what happens to his body. John already buried that natural body in water baptism and has risen in newness of life in Jesus. Sure would like it if God touched John’s body and made it a strong and highly functioning so his spirit and soul could hang around and get a chance to lay up treasure in heaven.

Diane or I will post the today’s results soon..…..

John’s platelet count was down to 14K on his visit Friday. They were told that there was a very limited supply and they would get some ready on Saturday or Sunday. When did he want to come back. He chose Sunday. We went in just before 9 on Sunday morning and they took labs. The Doc wanted to wait to see labs before they started platlets. When results came back his platlets were at 16K. So Doc did not want transfuse. We got out of there and back home around noon. He does not go back till Wednesday.

John’s appointment went alright yesterday. The great news is his platelets came up on their own. They were 16K which is still extremely low, but since he isn’t bleeding he didn’t get a transfusion. Hopefully they will continue to climb. He didn’t need red blood either and his white count jumped dramatically from the shot of GCSF he got on Friday.

Nothing else to say! :~)

We have some newer photos in the slideshow.

Here is one of Acey!

John’s clinic visit went well today, however his counts were down again and he needed GCSF for white cell stimulation and platelets. His platelet count was 14,000 normal is above 50,000, but there is a severe shortage of platelets and none were available. He goes back Sunday and they’ll have some by then. In the mean time he is extremely suseptable to bleeding. I wonder how many other people’s children are not getting platelets today because of the shortage. Please donate. I don’t understand when people are willing to donate for John but not for someone else’s child. Is his life more valuable?

The doctors are still talking about getting John some more bone marrow from his donor and giving him a “boost". If this happens it will be an outpatient process and he won’t be admitted.

We’re going out with friends tonight. Winter storm watch in effect for late tonight. I doubt anything transpires. Take care.

John had a bone marrow biopsy yesterday. The results were wonderful, showing no cancer cells. Samples of the marrow were sent off and we should get more good news next week confirming 100% graftment.

I have to keep reminding myself that we have climbed this horrendous mountain of cancer and we are on the other side. We have been through so much that we have become accustomed to walking around slumped over hoping nothing hits us. It was like watching a war movie and never knowing when a bullet was going to hit. After 2 ½ years of this I don’t exactly know how to go on and function. I find it hard to believe a “Cease fire” actually exists. So I get up every morning wondering if it is really safe to walk in the clear? Is the war really over? I have to believe it is. I can’t live as there is no hope. Now I understand why there are support groups for patients and their families after they have survived cancer. Its hard recovering from the shock of it all. When you’re in the mist of it you just go on and plod through. Afterwards I’ve been like “My God. Look what we’ve been through!” I’m tired of all this sickness and am ready to lay down my sword. Every day I look at John and look for progress and I see it. He threw up last night, but that was the first time in a couple of weeks and was related to the procedure and having to fast before it. It is becoming easier to see John in the future, as a grown man. Memories still haunt me as I guess they always will, but I can’t live in yesterday. John is looking forward and planning for his future. He wants to go to UAB here in town for his first year and then go to California after the medical team here doesn’t have to follow him as closely. I told him that I wasn’t planning on moving to California, but if he wants to go to school there then I’ll pack my bags. LOL. It breaks my heart to think of him being moving out of the house let alone to California. I’ve been with him and close to him for the past 2 ½ years, sleeping in the same room with him etc. and now he wants to move away to California of all places. I hope his dreams come true, but I also hope they change and he wants to stay home and go to school here.

Thats all for now. Thanks for your prayers.

Diane

The initial result of the bone marrow test yesterday was clear. They saw no suspicious cells. John was understandably sore and threw up some last night. He said he threw up mucus and it was partly because it built up in his throat since he had not been allowed to eat or drink. Still hate to see him suffer so.

The results are good news. We get so anxious when these tests come up. I feel much better today.

Bone Marrrow Aspiration this morning. As I write this John is going into sedation. They use something they call Simon sedation. It is a crème like substance that they inject into the DLHC. It is a very light sedation but requires no food or drink for 6 hours prior. John was in there at 8AM and went NPO at 2 AM.

This BMA is part of John’s normal scheduled procedures. We are at like 110 days post transplant now. He has not been feeling well. Diane and I have grown more and more anxious this month. All the reports we get from the flesh manipulators are positive. But they say we might need to give John more donor marrow cause he does not produce enough cells.

John and I spent all day at CHSYS on Sunday. We got there before 9 and did not get out till 5:30. They gave John 2 bags of red blood. Not sure why it took so long. I can tell you I will never ever feel bad again if something I am doing takes longer than expected. I feel like I have been waiting for 3 years and still we are in the midst of the mess.

John has been acting very peculiar lately. Sometimes almost child like. Not sure what is going on in his soul. He has suffered some horrific stuff and is still in the fight. This adds to our stress and anxiety. He talks a lot about going to Berkley. Yet I know he does not understand what it is like to be so independent. All of his independence was ripped away from him when he started treatment. Don’t know if he would survive the shock. Especially the culture of California flesh eaters. John still whines and throws fits if he has to make his own sandwich or wash his own clothes.

Two months ago I started having recurring thoughts that John would die on January 30th. I have fought against this and resisted it and still it recurs. This has caused me great anxiety and as the date approaches I grow more anxious. I know I have no control over when anyone dies. Death is one of those things that take care of themselves. Probably the only thing that does not need any help. It is going to occur whether we like it or want it. I have been feeling like Diane and I should make pre-arrangements. My mom said it was better for them when her mom passed that all the arrangements had been made in advance. They did not have to make decisions about stupid stuff or spend money when they were so upset. Makes good sense to me.

Sorry it’s taken so long to post. John has been doing well. He is going in 2 times a week now so that is so much better than when it was every day. Wednesday he gets a bone marrow biopsy done. This is routine around day 100. He went in yesterday and received 2 units of blood. Last Friday he got a bag of platelets and a shot of GCSF, which stimulates white blood production. He was making sufficient amounts of cells and then his body slowed down production for some unknown reason. They may go back to his donor to harvest some additional bone marrow to give him a “boost”. Apparently this happens sometimes. Recovery is so slow now, its cell production which is slowing him down. He’s made so much progress. He is eating fairly normally. Still has occasional nausea. Last week his white blood level dropped significantly and his ANC was quite low. This left him very susceptible to infection. It is such a helpless feeling. You just feel so vulnerable. I had been thinking maybe soon I could take him to an afternoon matinee, where it was less crowded, even though he’d have to wear his mask. He doesn’t like movies much, and probably wouldn’t want to go, but I can still dream. Just take him some place other than the hospital! But with his ANC being around 600 there was no way, normal is above 1500.

I’m reading a book titled Across the Chasm which is written by a wife who’s husband needed a bone marrow transplant. It is good for me to read it because it helps me feel connected with another caregiver of a BMT patient. It is written from her perspective as a caregiver. She talks about how they had to move from Pittsburgh to a transplant center far away from home and get an apartment. I see many people at Children’s Hospital who do this. It just changes your life and the hospital becomes your life. I have been continually amazed at the people who asked about how John was doing during transplant and after when we were coming in everyday. They would often ask me if I was still working and that would just stun me. I was sleeping up there and wouldn’t come home for days or I was going up there for 8-10 hours a day and they asked if I was working. I envied these people because they obviously had no clue what we were going through. I pray they never get a clue, because if they really understood, they would be going through it themselves.

We got some pictures in and will post them soon. Check back soon!

Diane

Tuesday’s visit, January 11, went well! We received some great news! The engraftment studies came back and John is 100% engrafted! You don’t get better than that! That means that his bone marrow is all, 100%, his donor’s. Awesome! We will be reaching a milestone on Sunday. It will be John’s 100 day post-transplant. One hundred days are significant because that is the time period that major accute rejection can happen. After day 100 rejection is considered chronic and is easier to manage and not as life threatening. A lot of other complications can happen within the first 100 days as well. We are rejoicing that he has avoided them and is almost over the hurdle.

Yesterday showed that his white blood count has dropped again, but not significantly enough to require a dose of the stimulating hormone GCSF. His ANC, absolute neutraphil count, was still high enough at 1300. His creatine level (kidneys) was 1.4. This is elevated. We anticipated this would happen when he went off the liquid nutrition, TPN, last week. He is setting himself a goal to increase his fluid intake everyday, yesterday he had 90 ounces. I remember just a couple months ago when he couldn’t drink 20 ounces in a day. So, he is doing well.

At day 100 he begins to taper off his Cyclosporin at a rate of 10% a week. That medicine is wicked smelling. It smells like kerosene. I open the blister pack 15 minutes prior to him taking it to give it a chance to breathe and lose some of the stench.

Next week he will have the 100 day bone marrow. There is no concern about the results of this what-so-ever being that he is 100% engrafted. All his old cancer ridden bone marrow is dead! Praise God!

I have been so tired today. Its like the better that John feels the more I feel like I can allow myself to let go of pent up anxiety. I think I am very worn out. I hardly did anything today, but I feel like I did. I would like to schedule a time to use the day spa package Richard got me for Christmas and get away for a few hours, but even that takes too much energy. I was downstairs yesterday and John called me from the top of the stairs to ask me to fix him a sandwich. As soon as I heard his voice I thought something was wrong and I immediately pictured myself throwing some of his stuff in his suitcase and heading back to the hospital. Will I ever be able to react normally anymore when he calls me and not have my heart leap to my throat?

John’s appt went well today. The doctor said his labs were much better and he is manufacturing red blood cells. He continues to have elevated temps at night, but the doctor said sometimes this is caused from engrafting well. She is not concerned over the mild nightly temps. We don’t even have to obsess over checking it unless he is showing symptoms. He doesn’t have to go back until Tuesday! Also,,,he is now off the TPN! No more daily nutitional I.V.’s! Yes! This is a major breakthrough! Hopefully he will be able to drink enough and eat well enough on his own. I don’t think this will be a problem b/c he has been doing a good job lately. We are encouraged and are looking forward to a few days off and being TPN free! John says he is going to have to start lifting more weights b/c he doesn’t have the heavy TPN to lug around anymore!

Aunt Reba passed away this morning. She is on my list of great Saints of the Christian faith. She deserves to be in the Glory! Believe the funeral is Saturday morning. Hope I can get there.

Tsunami! Can’t fathom the scale of the tragedy in Asia. Can’t help but wonder who lost the most enemies in the tragedy and how good will come out of such a horrific mess. Only thing I can think of that is worse is genocide of Jews/Africans/Eastern Europeans/American Indians and Hiroshima/Nagasaki. Hopefully tsunami was not caused by men! Some people will blame God for it. They are confused and perhaps have never really met Him. Still people will be angry at God and the same people will think nothing of what is happening in the Sudan. Guess they think that is God’s fault too.

Why does the world offer so much aid and support for weather/geological disasters and just overlook genocide. Both of them are natural.

John’s counts continue to fall and he is having fevers. These things are not good. Doctors have not specifically addressed them. They have done blood cultures and they gave him platelets and RBC. Also started GCSF again. That stimulates WBC. He responds to the GCSF. Have a strong, strong, strong since of foreboding. At least he got to come home today.

I am going to try and take Jewelia’s stuff to Atlanta on Sunday now instead of Saturday. So I can go to the Delta to Reba Maugh’s Funeral. Maybe someone would like to drive a pickup load of college student stuff to Oglethorpe University for me. Hmmmmm….

Going home. His temperature is still elevated 99’s. But that’s not considered a temp so we’re headed home. Official diagnosis? There isn’t one.
Thank you for your prayers.

John had to be readmitted last night, Sunday, January 2, for fever. It got up to 101. At 100.5 the stem cell patients are admitted. They are running blood cultures on him and on his catheter line. Also checking for viruses. All the same stuff as usual. John’s spirits are great. His primary doctor came in and told him he looks better than she has ever seen him look, evenbefore transplant. His temp has been in the 99 range today and if it stays below 100 he can go home tomorrow. His counts are still low. He received some red blood last week. I think if his platelets drop much more he’ll get some of those. His platelet count was 12,000 today. They are talking about sending out some engraftment studies on him to see what percent of his bone marrow is his and what percent is his donor’s.

These tests were supposed to be sent out 3 weeks ago, but we never heard anything back. His doctor said she thinks they were never sent off. That really ticks me off.

Have not posted anything in more than two weeks. Had to spend several days at CHSYS with John and he was not doing well. Caused me to get down and depressed. Tried to keep a positive view and not allow despair. Found the hours of isolation, suffering, and boredom to be a grind I was unable to handle on my own. Knowing this made me even more angry and depressed. The stem cell unit got several patients in the last few weeks and it was difficult to not have the suffering around us add to our burden. One of the parents that attended the support group meal on Thursday night lost their daughter. So much stress from work, CHSYS, family, and just living in the USA. It all really has ground me down. I do not want to post the reality of our experience and my weakness.

Started this post a few weeks ago. Saved it as draft and did not continue it. Posted a short note again today 28-Dec-2004 because people were starting to email me. Figured I should continue working on this one now. So here it is! (more…)

John continues to get liquid nutrition every night. The pump runs 10 hours now. We were at 16 then 12 and now 10 hours. He is getting RBC today. His counts have been continuing to fall. Platelets were 27K yesterday. They gave him the option of waiting for the lab to ready the blood product yesterday. But he opted to go back today. I can’t imagine what this is like for him. It must really really stink!

We passed a good Christmas. Of course we did not get to have company. Wish we could of had our families and friends over. My mom and dad came but stayed 2 nights in hotel and only stayed a few hours each day. It was fun watching them play console games with John. WORMS Armageddon and NFL 2K.

We played Super Smash Bro. but I can only take an hour or so of getting bashed 3 KO to 1 before I am ready to play a single player game. I have been playing ATITD2 some and it has been a nice distraction. Also have started playing SimCity 4. It is fun but hard to stay on budget. I like the new transportation options. Also makes me never ever want to be a Mayor. Yuck!

Diane and I need a vacation. We are so ground down, yet enduring. We are so afraid, yet boldly pressing. When I get burdened and fatigued it is difficult to live with me cause words and communication are so precious and important to me that I become like Gollum. If my precious is not well used I get angry. I get confused. I get crazy! Diane is so burdened by the medical transport and home health issues and overwhelmed by housekeeping that has been necessarily woefully neglected and concerned about the woefully lacking medical billing processes. Neither one of us can make since out of what is billed to the insurer and what is paid and what is not paid. We have resorted to waiting till the stupid CHSYS billing sends stuff to collections. Then we deal with that particular item. This month they sent something to collection agency that had never been sent to the insurer. They also sent something for Emergency Room service when we were in the clinic that day. Will somebody please please please do something to fix healthcare in the USA so it serves ill people and their families, rather than serving to enrich drug companies, physicians, politicians, and people like Scrushy and company.

Deborah has had a sinus head cold thing for the past few days. She stays away from John and everyone else it seemed last night. I was sorry to see her feel puny on Christmas.

Have to take Jewelia’s stuff to Atlanta on Jan. 8th. Her classes begin again on the 12th. Her friend Naomi from Japan is coming to visit Thursday. Well you know, not visit at our house. They are getting a room at a hotel and Jewelia is going with them to celebrate New Year in Nashville I think. Jewel is still interning and working some at Diane’s old office. We are gonna hate seeing her go away again.

We got back some pictures from the past couple of months. I cropped them and added some to the web log. These images are larger than I normally post. So if you are using dialup connection they may load slowly. Bandwidth is cheap in most places now and the higher quality images load really fast over our ISP. You might need to use the left and right scroll bars on your browser to view the complete image. Because a picture paints a thousand words I did not add any commentary.

Today was the first Sunday we were not at the hospital over the past months. I got to attend Sunday School and Church. It was great!!!!!!! Pastor Danny’s message was right on! I missed being in the choir a lot. John is on an IV pump at home now. He got to stay home all weekend!

We have most of our Christmas shopping done. Our Sunday School Class took up an offering for us. It is such a blessing. Emily is bringing it over tomorrow. Wish we could host the Christmas Party for them again this year.

Scroll down and enjoy the new photos! They are posted under the general category.

Going to get into trouble for this one. Here is Jewelia with her mom and dad celebrating her 21st birthday:

Here is a more recent image of John playing at home:

Here is an image of John and Nurse Barbie.

This is an image of John and the Nurse Practitioner.

Here is John with a couple of nurses.

John was given the book “Eats Shoots & Leaves” as a gift by some nurses.

Here is a photo of John post transplant. He really suffered with mouth, throat, and stomach sores.

John came home from the hospital Wednesday. He said he was in for 99 hours. I didn’t keep up with the hours, but he sure did. His spirits remained high throughout his stay. I was so relieved. The last time he was in he was non-reponsive for practically the whole 9 days. He has virtually no memory of those 9 days. He just remembers a few incidences. The major concern was that he would become depressed.

He was sent home on TPN, total parenteral nutrition, which I administer into his Hickman catheter and it goes in over a 16 hour period daily. Hopefully, after about a week he will be eating and drinking well enough to cut back or stop completely. He has until Monday to see if he needs to be put on an appetite stimulant. A lot a patients need this to start eating again after transplant.

John doesn’t have to go into the hospital all weekend! That is two blessed free days! This is the longest stretch he has had between visits.

Richard and I went to his company’s Christmas party last night. We had a fun time and it was a good diversion. The host and hostess were so welcoming and friendly. I really enjoyed myself.

The BMA has not been scheduled yet. They started giving John GCSF again. It is a growth hormone and stimulates WBC production. WBC was below 2000 and platelets were below 40K. Creatinine(kidney) was just above 2 again. Three days in a row. Did not get the cyclosporine levels. Room number is 657.

Went home at lunch and got John’s iMac. Will take it up there after work.

I dropped John off at CHSYS around 8 this morning. They called Diane an hour later and told her he was going to be admitted. John has not been able to drink or eat enough and he is very fatigued. His kidney function has been getting worse and they said it was from not getting enough fluids. His thyroid has a low level on one of the readings and this might be contributing to the fatigue. His white counts were lower today and they said they want to do a BMA to check for relapse.

Here we go again. The stress level is rising again. The pressure has been constant and variable. Never fully going away, but rising at times like this to extreme pressing almost crushing agonizing pressure. Everyone assures us he will beat it. That is what they told Marla. No one knows but Jesus. Are you ready to meet Him? Is John ready? I have been ready since 1979! Seems like yesterday.

Today’s appointment went fine. He still had low grade fever last night. Doctor decided to take some blood cultures and check for bacterial infection. She also is checking thyroid because of possible laten effects of radiation. His temp has been normal today and I’m not concerned (well, not overly concerned anyway!)

Had echo done on Friday. His heart functions are virtually the same as before the transplant. Praise God. We were praying for this because of the radiation and intense chemotherapy he had.

Still needs to go in tomorrow because of not getting enough fluids. He gets 1 1/2 liters each day plus magnesium. His magnesium and creatine levels were much better today.

His temperature was 99.2 when he went to bed last night. He kept having chills and the sweats all evening. He woke up and went to clinic. His temp there was 96 something. Today he feels fine, just tired, and tired of feeling tired. Richard took John.

John’s appetite is improving everyday. I check on him in the morning to see if he needs Ativan, anti-nausea medicine, before he gets moving and before he takes all his other meds. This morning I asked him how he was doing and he said his stomach hurt. I asked him “Where?” fearing the pancreatitis was acting up again. I laughed when he answered “Where there isn’t any food". Simple hunger I can handle with ease. He wanted a fried egg and toast. This is the second day in the row he had breakfast. Up till now he hasn’t been able to eat and keep anything down until after 2pm.

He has been having diarrea this afternoon and a low grade fever around 98.9-99.4 since last night. (The hospital wouldn’t call it that. They call it a “raised temp", it becomes a “fever” at 101.) He is concerned about GVHD, graft vs host disease, which is the new bone marrow rejecting the host, his body. It is awful having to watch out for this and having it hang over our heads. I think there is nothing to be concerned about. He has his appointment in the morning. He has been down in the living room playing games with the family almost all day. It is a drastic change from him being on the computer all the time. It is absolutely wonderful to have the whole family together. It makes me want to cry with graditude all the time.

Jewelia was going to bring him to the hospital this morning for his daily appointment to give us a break. However, he didn’t need to go because the doctor gave him a goal of fluid he needed to drink and he met it and got to skip a day and not go in. John drank so much he felt like throwing up. It is a completely luxurious feeling to be able to stay home.

Jewelia starts a internship at Healthsouth on Monday. She is excited.

9-3:00 at the clinic today. It takes so long! He needed fluids today because of his low liquid intake. His Cyclosporin level was good, and are the other levels. He came home and stayed awake. Didn’t go to bed but stayed on his computer. He took an early shower and actually ate some spaghetti with sauce! This is an awesome event! Shortly after he wanted some asparagus and spinach! He hasn’t thrown up today either! I definately see improvement today! Richard came home and I told him about the spaghetti and he was so excited. We rejoice in these victories won!

Thank you all for your prayers.

Not much to say. Its 4pm and he and I are just getting back from his daily visit. He received fluids today because he can’t drink enough. He also got some magnesium by i.v. We’re adding Zofran now to his anti-nausea meds. For nausea he is getting Ativan, Emend and the Zofran. He went off the Marinol because it didn’t seem to be helping with his nausea.

His mood seems to be improved lately.

Please pray that John stops vomitting.

We’ve been so busy and tired that it’s been hard to post.
John came home on Thanksgiving Day. Richard has taken John to the hospital today and yesterday so I can rest. I appreciate that so much. Yesterday they were there from 8-11:00am today 7:30-1:00. Both days he got fluids because he isn’t drinking enough. It is still hard for him to keep things down. He is still throwing up daily. Yesterday they stopped at a gaming store in Inverness and bought a controller and a couple games for the Game Cube. John went in for a few minutes because the store wasn’t crowded and he wore his mask. That’s been the first place he’s been other than home and the hospital since September 27th. Richard said when customers saw him coming they stepped out of the way and let him get what he needed. Four of the family could play at one time. John spent a good amount of time either playing or watching the rest of us play in the living room. It was nice having him up. John has felt strong enough to be able to walk to and from clinic from the lobby each day instead of taking the wheelchair. That is progress. We keep watching daily for little signs of progress. Each bite he takes and each ounce he drinks is one step closer to health. We keep a record of his daily intake. It is so hard not to obsess about everything he does.

We see everything through the hazy film of cancer.

I haven’t had the energy to add anything to a post. John’s temp hovers around 99-100. The nausea has gotten worse and nothing is working very well to control it. He has thrush and one concern is he has it way down his throat to his stomach. The major concern is after over a week why does he still have nausea? He is not acting like John. He sleeps allll the time and doesn’t eat or drink. He did try to eat and drink when he came in but the nausea just keeps worsening. He is getting another CT Scan of his chest today. He is also getting his digestive track down to the intestine scoped and biopsied. He will be put totally asleep for that and they said he won’t have pain from the biopsies because the line of those areas don’t have nerves. The major concern is having GVHD, graft verses host disease in his gut. We won’t have the results of these biopsies for a couple days.

John’s fever is lower this morning. Last time it was checked it was 99.7. His appetite seems to be increasing, probably in part due to the Marinol and in part to the fact he is not as nauseated. He did not throw up at all during the night and yesterday he had dry heaves just a few times. He has a lot of edema in his feet and I suspect the doctor will put him on Lasix when she sees it to getting some of the swelling down. Lasix is a diaeretic. When he was in here before sometimes he was put on Lasix and a laxative right before he went to bed then given a sleeping pill. Right…that really makes sense. You can’t sleep when you are on Lasix, it works fast.

I had to get away for a little while. I came home since John was feeling better and will be sleeping for a while yet. Its good for me to get away occationally because everything there grates on my nerves after a while, like the cafeteria food. As much as the patient’s families suffer there with all the stress they go through, it would be nice for them to have quality, tasty meals.

Looks like we’re dealing with another one of those ambiguous “infections” that you never get to the root of. All his blood cultures have been negative for viruses and bacteria. His CT scans of sinuses, chest and abdomen are normal. His temp was 101.6 about 1/2 hour ago.

We were told when he was released to expect to be readmitted soon with something or other. So, it didn’t come as a shock to us, but never the less its hard.

Jewelia is coming home this weekend from being in Buenos Aires, Argentina studying abroad. It will be so good to see her again. She has been gone since June 6. She turns 21 on Sunday.

Unfortunately, John was admitted today because of fever and nausea. He couldn’t keep his medicines down last night and couldn’t take them this morning and he has to take them, especially the anti-rejection drug. Today, at his request, he was put on a new medicine called Marinol. Marinol is a derivative of marijuana which suppresses nausea and increases appetite. It has been used in treating patients with anorexia to stimulate appetite. He is feeling better now and is asking for vegetable soup. I’m going to leave the hospital and go to the grocery store the new street over to get him some. I’m glad he is craving something.

I’m using the computer that comes with the room. John has already installed Firefox on it as he prefers it to Internet Explorer. Don ‘t know if I am spending the night. I’ll wait and see how his evening goes. He doesn’t think he needs anyone here tonight, but I don’t want to leave him. It’s 6:15pm and we are waiting for CT to show up to bring him to get a sinus CAT Scan since he has had some drainage. He has been put on 2 broad spectrum antibiotics.

I am doing better today emotionally. I felt very discouraged and down yesterday.

We’re going to leaving soon for his appt. and I think John will have to be admitted today. He has been so nauseated! Yesterday he needed to stop a couple times on the way in to keep from being sick. As soon as he got up there he got sick anyway. He couldn’t keep his medicine down last night. All weekend his temp hovered around 99.3. Last night it went to 100.9. I was ready to take him in and he wanted to wait a while. It went down to around 100.3. Now it is around 100. He definately will need fluids like he received yesterday. It was a long night for him. Got to get up there.

I’m getting ready to take John in for his daily appt. He was there from 9-9:00 on Friday. Over 4 hours of that time was waiting for his blood to come up. Saturday he didn’t have to go in. He is still getting his Cyclosporin level adjusted all the time. It causes pancreas and liver problems when too high. His pancreas levels are still high, but the pancreatitis symtoms are better.

He is doing better since he has come home. Eating better and definately drinking better. He has only needed fluids once since he got out last Tuesday. He comes downstairs to visit and walks around the house. Most of the time he is sitting up, not prone on the bed like he was at the hospital.

Thanks for your continued prayers and cards!
One day at a time.

John got to come home Tuesday evening after 6 weeks inpatient at CHSYS. Before he was allowed to come home we had to do a thorough cleaning of our house. This included getting the carpets and ducts cleaned. Matt Dover of Dover Cleaning came out and performed the service pro bono!!!!

My friend from work Jason Dover, Matt’s brother, came out and helped us get this knocked out. These guys did an awesome job! Here is Matt’s contact information:

Dover Cleaning Solutions

Matt Dover

205 281 3993

The machine that cleans out the duct work is fascinating. Our home is less than 10 years old and when we took the vent covers off and started cleaning I was surprised at the stuff in the ducts. Matt also has an antimicrobial fog he blew through the air ducts. they also have a super hot steam carpet cleaner. Our carpets have never looked better. Thanks so much guys you are awesome! Can’t thank the Dover family enough. This was a stress and burden that you wiped away in a matter of hours.

Everyone in the Central Alabama area call Dover Cleaning Solutions and get your crib cleaned.

Thanks so much Jason and Matt!

Yes! John is coming home. I’m packing now and Richard is coming to load the truck. We are also waiting on home healthcare to come by to give me some instructions and also I will be meeting with the pharmacy people. They doubled his Methadone levels today, from 5 mg/8hrs to 10mg/8hrs. to help with withdraw symptoms. He is so tired! Apparently flu-like symptoms are common coming off Morphine. We’ll be coming back daily for a while to check on blood levels and see if he needs blood/platelets or fluids.

Today is his 38th day in the hospital All day they have been saying he can go home tomorrow. Now it’s 8pm and he has a temp of 100.1. He is wiped out. He won’t go home if this continues. It could possibly be from getting 2 units of platelets today, sometimes that can cause a elevated temp. He is wiped out. He says he feels weird. They took him off Morphine today and onto Methedone to prevent withdraw symptoms. Recently he has been on some hefty doses of Morphine so he could be feeling “weird” from getting off of it.

This is so discouraging.

As of yesterday the doctor said John might be able to come home on Tuesday. That is what we are hoping for. They have begun to reduce his levels of Morphine. Tomorrow he starts on Methadone to help with withdraw.

Tomorrow we are getting our carpets and airducts cleaned. We need to get Hepa filters for the furnance/airconditioning. I have been working hard around here this weekend trying to make up for months of being gone. I’m de-cluttering John’s room so it will be easier to maintain and won’t collect as much dust which can be detrimental to his lungs. Since we will be going into the clinic daily for a while and they predict more admissions, I’m thinking about hiring some help with housecleaning. Can someone recommend a housecleaner? If so, send a “comment” to me with details. Your comments will not be posted.

We are so excited about having John come home! We are scared too about the enormity of his home healthcare needs.

The latest developement is that the doctor thinks he has a mild to moderate case of pancreatitis because he has pain at that site, the pancreas feels swollen and his lypase level is elevated. She thinks this is caused from the Cyclosporine which is given to prevent GVHD, graft vs host disease. She is lowering the level of this medicine by 10% today. They will continue to monitor the level of this med in his blood to be sure it stays at a theaputic level while it is lowered daily. Also, he has been put on a very low-fat diet. She thinks the shoulder pain is “referred” pain from the pancreas.

He has been using the hospital’s version of a heating pad now for several days. It is a couple wet washrags wrapped in plastic chuk pads and microwaved. Apparently there are too many legal conciderations to use a electric heating pad, i.e. patient could get burnt. So, we have been bringing the “heating pad” out to the nurse’s station to get it heated every so often. Today I brought in a heating pad from home. (Sh-h-h-h-h! Thats just between us!) One nurse said I could bring one in as long as bio-med comes in and checks it out for electronic safety.

I inquired if we could get physical therapy to come in and massage John’s shoulder. She came and gave him about a 1/2 hour massage. It loosened his muscles up some and he said he felt better.

I am using a computer in his room! How conveinent. The nurse just came in and saw him clipping his nails. He just got fussed at. You’re not supposed to use clippers ever when you have low platelets. He said “Oh well” and kept clipping.

John ate better today than he has in the past 2 weeks and the night is not over. He is drinking well too. He ate one of the eggs I brought him and a slice of bacon. He said the bacon tasted bitter on his tongue and tasted normal only on the middle of his tongue. The yolk was totally tasteless to him. He also had some soy yogurt. His tastebuds have changed a lot.

I came home because I have a “sick to my stomach” headache that Tylenol is not helping much with. Richard will spend the night. I just called up there and John is getting ready to take a shower. His pain is much more tolerable. The CAT Scan only showed a little bit of fluid on one of his lungs. That has been there since admission and is of very little concern.

I am planning on cleaning the house throughly this weekend and we are getting the carpets and air ducts cleaned on Monday so the house will be ready for John. The house gets to be such a mess when he’s inpatient. He is getting restless and is ready to come home!

Yesterday around noon the doctor came in and did her assessment. She said John would probably get out early next week. She took him off all antibiotics and is switching remaining meds over to oral. His morphine was rewritten to be lowered again. Around 1 ½ hours later John woke up to terrible pain in his shoulder radiating down his side. He was in agony. They went up on his morphine, put him on Neurontin, Oxycodone and gave him a heating pad. Still he was in pain. They x-rayed him and it didn’t show anything. Today are planning on doing a CT Scan. The pain is better, but still there. He got up around 1:30 this morning and walked some and did some leg exercises. Physical Therapy came in this morning and helped him with exercises while he was in bed. He was pleasant last night and visiting with the nurses.He drank a lot of liquids yesterday, but the pain kept him from drinking. We were up until around 2:30am. Last night he got a fever and was put back on Fortaz, an antibiotic. If the fever continues it will delay him coming home.

John wanted a fried egg this morning. Since he hasn’t eaten anything to mention in over 2 weeks, I was elated. I called down to the cafeteria to order and it was 10:05am. The said the grill was closed 5 minutes ago and they couldn’t make him an egg! I asked the lady on our floor to call down and they told her the same thing! Can you believe it?? It’s too much for them to make an egg. He asked me to come home and make him one. That’s what I’m doing.

The need for platelets is no longer urgent. We have people scheduled through Sunday that I know of. Thank you so much to those of you who donated and are scheduled to donate. We can’t thank you enough.

Things can change fast. John is off all antibiotics except for one. He is off the anti-fungal. His Morphine has been lower twice since Saturday. His WBC was over 16,000 today! The GCSF was stopped. He got up yesterday and today and showered and walked. He is attempting to eat. As soon as he can eat, take oral meds, stay fever free and maintain a good WBC, he can go home. Projected date is next Monday or Tuesday. He is still very nauseated and that keeps him from eating.

He is still getting platelets, but the need has slacked. His mouth and throat are much better so he is not bleeding like he was. He is still getting the directed donor platelets. They were transfusing at 50K because of his bleeding, then at 20K. After he gets out it will be at around 10K. This seems awfully low to me. The platelets are the last to respond to transplant. First its white cells, then red and then lastly platelets.

John’s hands and feet are checked regularly for rash which is a tell-tale sign of graft verses host disease, GVHD. Now is the time frame it happens.

There are 6 patients on the floor now. The max is 8. John doesn’t have his own nurse anymore. We miss the individual attention and response time. I am so sick of the i.v. pump going off in the middle of the night and waking John and I up, then I have to notify the nurse to come in and take care of it. What a idiotic system. Sometimes it goes off every 1/2 hour. Why isn’t there a system in place that notifies the nurse’s station or the nurse directly, like a pager? Why wake up the patient who so despartly needs sleep?? Can anyone explain this madness?

Friday, October 29th, I was at the Red Cross to donate platelets for John. After my initial assessment I walked back to the apheresis area to begin and saw Ken, a husband of one of my co-workers, laying there donating for John. I was totally unprepared to see someone donating for him. I was overcome with emotion at his sacrifice for my son whom he doesn’t even know. There are many ways to live our lives sacrificially for others. It can be done through giving our time, energy, muscle power, listening, praying and many other ways. The Scripture teaches us to lay down our lives for others for Christ. We have been recipients of others’ sacrifices many times during John’s illness since June of 2002 and I am overwhelmed by the kindness and generosity of our friends and people who are strangers to us. When I saw Ken laying there and his blood being filtered and platelets removed for my son I thought a lot about what a gift this was. Ken’s life giving blood given to John so he can live and he can thrive. What a bestowal. John once said that he considered a life not helping to better mankind and giving to others is a life wasted.

I wish I were eloquent enough to put into words my thoughts on this. I haven’t even begun to mentally process the sacrifice that a 28 year old man, a stranger, made on behalf of John in donating his bone marrow so John can grow up, have a rich full life, have a family and be happy. Someday, all this suffering he is going through will be a memory, an ordeal that helped form him into a stronger, more compassionate human than he already is.

Some good news finally. Friday his WBC was 680, Saturday 1700 (!) and today 3370!!! Praise God! The nurses are coming in and congratulating him. We are so relieved. He gets GCSF, a cell production stimulant, twice a day. He will come off of this closer to his release.

It’s been a couple of days since he has spiked a fever so he is going off the anti-fungal medicine and one antibiotic. He is still on 3 antibiotics.

He continues to have a lot of nausea. He got sick again this morning. Sitting up makes him very nauseated and dizzy. He ate some applesauce yesterday with no problems and also drank some Boost and tea. He is going to try to eat more each day, especially since the words “feeding tube” were mentioned today. Its not that he doesn’t want to eat or not that he doesn’t try, it just makes him sick. But he is persevering, he’s a fighter. The doctor is cutting back again on his continuous flow of morphine.

He is developing some bedsores on his heels. Today he was sitting up more in the bed and I hope he will feel well enough to walk some today. He has been to sick when he sits up to be able to get out of bed so the nurses have been changing his bed with him in it. He seems to be stronger today and Physical Therapy will work with him tomorrow and get him moving hopefully. Richard is up there now and I got to come home for a while.

I had 2 nights this week when Richard came up and spent the night and I got to sleep at home. I was very tired Wednesday night and didn’t sleep well up there. I kept falling into a deep sleep and dreaming and kept waking up at the stupid i.v. beeping etc. John said I yelled in my sleep 3 times during the night. One time, his sweet, loving nurse came in (she is so considerate that she uses a pen light at night when she comes in instead of the overhead lights) and she was working on his i.v.’s At this point I yelled, very loudly, “DON’T DO THAT!” She told me later I scared her so bad that she jumped and so did John. She woke me up by responding “Do you need something?” I wondered why she was waking me up. The next day Richard asked John if he would prefer if he spent the night instead of me. John mused, “Hummmmmm. Which do I want?? Snoring or yelling??”

He actually has been watching some TV. This is a definite sign of extreme boredom! He generally watches documentaries and nature or history channels. Last night we watched Zoolander! We have watched it a couple of times during hospital admissions and it always makes us laugh! “Pop! (Cough-cough) I think I’ve got the Black Lung! (Cough)” “What is this?!? A school for ants?!”

Some day I will write about John’s visit this week with Miss America, Deidre Downs. She came to his room and showed him her crown. He was not impressed.

John has been in some pain. He is still on morphine, continuous i.v. and then as needed pump. (up to one dose every 15 mins.) He has pain in his stomach and intestines. He had a CAT scan that didn’t show much. The pain is probably from the mucositis in his stomach and a bowel obstruction in his intestine. He is going to start working on eating again. So far he has lost very little weight. He is doped up from all the morphine.

Thank you to all those who have scheduled to donate platelets! We have had a good response. He is receiving my platelets as I write this and I am scheduled to go back and donate today. I got so cold as I donated! The blood is filtered and platelets are removed and it goes back in the body at room temperature. I sat on a bed with a heating pad and had a couple blankets on me. This time I am bringing a jacket! It is such a small sacrifice being cold though to stop John’s bleeding. He is still getting platelet transfusions 2 times a day. He has blood transfusions much less frequently. Although John is AB+, the universal receipiant, he is also CMV negative. (He has not had a common virus that can be transmitted through CMV positive blood.) Not having this virus is what makes it hard to find blood products for John. Fortunately, Richard and I both tested negative, so we can donate. After donation, the person can call Red Cross to see if they tested negative and can donate again in his name if they desire. If you are scheduled to donate, please eat a good meal prior to donation!

His WBC is at 680 today. He has been slow in having it come up. Wednesday it was 680, yesterday 330 and today 680. Earlier in the week it was below 100. They tell me not to get discouraged. He’s just slow. It seems to me that they are somewhat concerned though, but not overly.

As always, his spirits are good.

John has an urgent need for platelets!! The doctor spoke to me today about seeing if we can rally people together who would be willing to donate platelets for John! John is still bleeding and needing platelet transfusions about 3 times a day! The platelets are hard to come by and sometimes we have had to wait all day to get them in with John bleeding the whole day. He also believes John will feel better as this will increase his energy and help with nausea. His mucositis is bleeding and a lot goes down to his stomach which of course makes him sick, he also has frequent nose bleeds. He is on approximately 20 medications a day, 3-4 of which are for nausea.

The Single Donor Platelets will be better for John for the following reasons:
Each donor’s platelets and blood have a variety of antigens. A typical bag (unit) of platelets consists of 4-5 peoples donations. John’s body releases antibodies in response to the antigens. More differing types of antigens, from multiple donors, equal a response of more antibodies which kill off of platelets. Therefore, single donor platelets (from only one source) are more readily accepted and utilized by his body. Last night his count was only 27K and normal is 150-450K. After the transfusion it was only up to 32K and he was still bleeding.

We need people who are willing to donate at least twice a week preferably, but any is better than none. The process takes about 2 hours. It differs in donating blood in that the platelets are actually removed from your blood and your blood is given back to you. So, we’ve been told the feeling of dizziness many people get does not occur as frequently. Platelets can be donated every 48hrs. usually. I am scheduled for 12:30pm tomorrow and Richard for 5:30pm today. John is AB+, which is the universal recipient. Tests will be run on the donated platelets to check for certain viruses that John has not had to make sure he can receive the donation. If he can’t it will not go to waste and someone else will receive it. PLEASE call if you are able and willing to donate and schedule a time! Weekend and early evening appointments are available! The American Red Cross only receives Direct Donor Donations at certain locations and only at scheduled times. You can donate in Huntsville, Montgomery, Mobile and Birmingham. The number to call is American Red Cross Special Collections, 1-888-905-3344

Thank you!

This morning his WBC was 110. His mouth looks much better, all except for his bottom lip, inside and outside. It looks like raw hamburger. It keeps bleeding. He is getting plateletts, so hopefully the bleeding will stop. I wish he could sleep through the night. He is getting about 20 medicines.

Nothing else to say.

Yesterday WBC was down to 60. They say it is normal for it to go down like this. Friday he tried to sleep all day. He was so worn out. He used his suction machine a lot. He’s not getting out as much blood as he used to. He is getting out a lot of flesh still. Now his mouth is all black, inside and outside.
He is still getting plateletts and blood. There was some confusion about the American Red Cross form the doctor had to send out to set John up to be a direct donor recipient. Apparently, the local Red Cross sent over an old form to be faxed to Montgomery. It had a fax number on there which was no longer valid. Hopefully, everything will soon be straightened out and direct donations can begin.
Richard came over after work and I went home for a nap. He ended up spending the night with John. I’m on my way up there now.

Just a quick post. Its 10:15pm and I’m on my way back to the hospital. Richard left work an hour early to come to the hospital and be with John while I went home to take a nap. I spoke with Richard earlier and he said the doctor came by and said his white blood count is up to 300! Praise the Lord! This appears to indicate that the new marrow is beginning to function and make cells! The doctor was happy and we are encouraged. We were told to expect the counts to fluctuate up and down for a while.

John had an awful night last night. (Tuesday) He probably got around 1 hour sleep all totaled. He kept falling asleep then waking up gagging on mucus and would need to use his suction hose. Around 6am he threw up a lot of it. He is still coughing up flesh and his mouth is lossing skin. Still he forced himself to walk around the unit some. I don’t know how he does it all and still maintain a reasonable disposition.

Thank you for your prayers! Please keep praying for engraftment to occur and NO graft verses host disease!

John had a rough night last night. The mucositis kept him from having a good night’s sleep. He kept waking up choking from his air passage being so restricted. He would wake up and have to spit out a bunch of blockage so he could breath. It was very disconcerting. Today he was started on a medicine to help dry up the mucus. They hooked up a hose that delivers cool mist. It is a humidifier of sorts that he usually places under his arm and lays on his chest so it will deliver the mist up his nose and in his mouth. That should help to loosen things up I hope. His mouth is looking somewhat better, if you use your imagination. He has a lot of bruised looking areas now. His doctor feels he is now making white cells and that is helping to clear things up! His count last night and this morning was 110. (Normal is 4300-10,800). Apparently the count could be higher but not show up in the CBC (complete blood count) because the WBC are concentrated in the throat and mouth healing the flesh. He only needed one unit of platelets today. So, the doctor feels engraftment is starting to occur! It is a slow process. The numbers will start showing it soon. Please keep praying!

His doctors seem to really enjoy his personality. His primary Oncologist said he is one of the most pragmatic people she knows. They are all very impressed with his determination, drive and spirit. Have I said that before in an earlier post? Doesn’t matter. I’ll brag on him again and again I’m sure.

Our youngest, Deborah, is doing well too. She is in a new school and seems to enjoy it well enough. That is to say she complains about it more or less the same amount as her old school. She got an essay back today that the teacher was very impressed with. She’s off to church drama practice tonight. She has handled this exceptionally well.

That’s all for now!

I just got back from being with John. He feels pretty bad because of his mouth and throat. I don’t think he ate anything today. He tried to drink different things today, but didn’t have much success. He is complaining about a certain section of his throat, by the Adam’s apple. I think he has another area there like he threw up this morning. It is making him pretty miserable. He visited a lot today and tried to talk. He received 1 unit blood this morning and 2 units of platelets. He had another CBC drawn this evening and tonight he will receive another unit each of blood and platelets.

We have had some inquiries from people wanting to donate blood and platelets. This is a wonderful idea and we would appreciate it. He currently is AB+, but his type will change to B+ sometime during the bone marrow engraftment. He is being typed 2x’s a week. John’s doctor is filling out paperwork to give to American Red Cross so people could donate in his name. If you are interested please “comment"(comments are not immediately posted) or email at dd321blastoff@yahoo.com

I am amazed at how tenuous the blood and platelet supply is. Platelets are only good for 5 days. I’m not sure about blood. It seems like the supplies are always low, especially for platelets. Please consider donating to the general supply in your area. People’s lives depend on it, I know John’s has. That is the end of my public service announcement for today.

John wanted to nap this afternoon and wanted us out of the room. Someone anonymously left a gift certificate for McCormick’s and Smitz seafood restaurant by the Brookwood Mall on Richard’s desk today. Richard and I went there and had a very nice meal. It was so nice to eat out at a place that is not within walking distance to Children’s Hospital. The food was so good! It was a lovely restaurant with scrumptious food, good décor, attentive staff, and horribly uncomfortable straight backed booths. It was nice to spend the time together and have a good meal.

That’s all for now.

John is amazing! His spirits are good today as usual. He had acid reflux through the night. This morning he took some liquid Tylenol and that made him throw up. He threw up blood and throat sores. He said it was a mixed blessing because it got rid of some of the sores. He said one was 1 inch X 2inches and ½ inch deep. Sorry readers if this was too graphic, but it serves to illustrate how uncomfortable eating and drinking has been for him. If you have sores which are ½ deep in your throat how much room does that leave for the passage of food?! Several sores came up and his throat really hurt, but in time it felt better than it had been.

The doctors are still so pleased with how well he is doing. His liver function tests were a little elevated recently but prior to that the doctor said it was “remarkable” how sound the liver tests had been. She said she had never seen the tests be so good and that his were “perfect”. Several times I have heard the doctors and nurses discussing him at the nurse’s station. I overhear them saying that he is doing fantastic, they are really impressed, great, he’s a trooper and etc.

He has a rash on his arms and hands. Please pray that this is nothing of consequence and it would go away soon. Thank you!

Spent most of the day yesterday with John. He is suffering from the mucusitis. His mouth is very swollen and sore. He uses the suction frequently so he does not have to swallow the blood and stuff. He is still pretty well medicated. He worked out with dumdbells and got a shower around 5 PM. He got unhooked from the machines and took a good walk up and down the hall with his mask on. He walked for 30 minutes. We figure he covered about half a mile or so. Thirty 2X2 ceiling tiles at a diagonal times sixty passes.

It was so good to see him. His attitude is good. Strong, determined, focussed! Fever has not been high but persistent. He did well when he got the antifungal medicine.

Not sure how this sounds. We have a project at work that required our team to go in at 3 AM this morning. I had John call me at 2 AM if he was awake in case I overslept. This also let me know he was doing well. I have to go back in 5 hours.

Here is a picture of John before cancer snowboarding near his Grandma Ragan’s home!

Yesterday they had CT scans on John. Wanted to see lungs and make sure all was clear. He continues to have fevers and they are afraid of fungus. All the scans were clear and everything looked good. He got red blood and platlets again this morning. His counts are still really low. He is pretty heavily medicated and briefly struggles to remain coherent at times due to narcotics. He is still able to eat and drink and this pleases the Dr.

His botttom lip is pretty swollen from the sores. They are waiting another 24 hours for fever to go away before they determine if he needs antifungal. He does not want to talk much now cause it hurts too much. He is using his iMac voice synthesizer to say things for him. It freaked the nurse out yesterday. She was wondering who was talking in John’s room. He types in text and it is played back through the speaker. I think he bought a digital multimeter today.

Dr. Sande got John a suction device similar to what they use at the dentist. She did this so he could make his mouth more comfortable by suctioning the mucus and spit and dead cells from the sores. He is still running a fever and this has them a bit concerned. The cultures are still negative and they want to take some pictures. Dr. modified the antibiotics and took him off the oral Cipro. If fever persists they might start antifungals this weekend just in case. Dr. also said if John continues to eat and drink and “use his gut” he will not have to get feeding tube.

Surgeon came up to check out the cyst around 6 AM today. He said it was amazing because it looked like it was healing up from the inside. He was pleased with how it looked.

It is difficult to not use the names of the doctors in these posts. We work so closely with them for such a long time and under pretty stressful issues. We get to know them better than they probably prefer. I try to not use their names to respect their privacy and as a courtesy.

We heard today that the flu shots have been discontinued in our area now. We are so glad we went when we did!

Deborah and Bo two days after Ivan at the park in Leeds. Where they are at was under water a few hours earlier.

Our friend Mari prepared a delicious Japanese meal for us this summer. She taught Deb to use chop sticks! We love you and miss you Mari!

Here is the spread!

Here is a photo from Diane’s 0x29 birthday taken during hurricane Ivan! Notice the lantern because the power was out.

This is a picture taken less than three weeks ago!

Well the wait for engraftment cell production continues. WBC count yesterday was .04. We have been doing what we can to limit our contact with large numbers of people and our exposure to any bugs, viruses, or sicknesses. This has meant missing church and other social activities. We are beginning to feel a bit isolated and can only imagine how isolated John feels.

He started having fever on Saturday and it has continued off and on and off and on. Last night right before I left it was 100.7. He has a switch to give himself morphine on demand. He has been using it sparingly. The past couple of days he has been suffering from the pain in his mouth throat and stomach. The morphine helps with the stomach but he has to slowly drink a pink liquid and eat narcotic lollipops for his throat and mouth. It is really odd when you visit with him now. Even if you are speaking to him on the phone. His speech becomes slurred and he falls asleep. This only lasts for maybe 3 minutes and he wakes up and is very coherent like nothing happened. He notices it. It is like little lapses in time for him. He asked me what time it was several times last night even though the computer was on right in front of him. He was trying to find a good digital multi-meter to bid on in online auctions. He has wanted one for a while now. Think he is looking at the Fluke models. He bid on one that retails for $500 and it went on the auction for $47. He did not win it. I am sure he will find one soon.

We spent the whole day together Sunday. We watched some football and watched the debate at Cornell U of the “non” Presidential candidates. Seems to be only one political party in the United States now. It is divided into two branches of representation. One being named Republican and the other being named Democrat. Yet both of them are greatly influenced by the drug companies, major corporations, and special interests that fuel them with pleasure, cash , and power. This duplicity of political power seem to do all they can to not allow free open debate with other political candidates. Thusly and therefore these “non” candidates hold forums and express their ideals but unfortunately this is to only the more enlightened and informed populace. People of wisdom and knowledge have always been the minority in the world. John and I enjoyed watching and listening to the free expression of ideas.

John did not pass a good night last night. Seems his morphine pump malfunctioned and he missed 8 hours of the masquerade. He had weird and vivid dreams that melded into reality. We hate seeing this suffering but we are like a dog in the hunt now. We can only be in the pursuit of the restorative completion and we don’t know we have fleas. We can not afford to stop and scratch. We need prayers, strength, and endurance more now than ever. Prayed many times last night between John’s dozing and waking. Never seemed to be enough but the room sure seemed to become peaceful right before I left.

Just got home from visiting. John ,s fever was 102 and he is really suffering from the mucusitis. He threw up blood and mucus for about 15 minutes. He has a mouth full of sores and discmfort. We had two nurses in there helping us. One held the trashcan for him to throw up in and the othe administered anti nausea meds drew cultures and gave morphine. I made wet wash cloths for him and the nurse to wipe his mouth and face. And got him tissues and comforted with touch. The nurse also placed a wet cloth on back of his neck when he was heaving. Dr. came in and monitored everything. John eventually got up and went to mirror so he could wipe some sores out of his mouth. Dr. did not like it and encouraged him not to do it anymore this evening.

He then did his mouth care and Matt called to talk to him. They talked for about 20 minutes. Matt is a friend from church. He had a surgical procedure on his lung yesterday and is down on the third floor. They comiserated on the phone until John got fatigued.

Here is a picture of John and his younger sister Deborah taken 10 days before transplant!

Just a quick update on today, Monday.
The doctor said it was “Remarkable” that John hasn’t had a fever until this weekend. Yesterday he didn’t have one at all and today it is hovering around 100. Blood cultures were taken again for it today. Saturday’s cultures were negative, no bacterial infection or viral. We hope for the same today.

John is in good spirits. The doctor told me his mature attitude and spirit are impressive. She is very pleased.
The Nutritionist came by today and said she is “Estatic” over him still eating and his minimal weight loss. He has loss around 2 lbs. and that could be just water.

I was told that by now, +5 days, patients are generally holding a lot of water and are bloated. John is not!

The mucositis continues to worsen. He said his throat felt like he was swallowing shards of glass earlier this morning when he was eating. He told the nutritionist he didn’t know how much longer he could keep eating. Today he had some soy yogurt and he said it was soothing. I looked into his mouth today and the breakdown of tissue looks very painful. He had a narcotic lolipop this morning. He is now on a morphine pump for pain. Morphine generally doesn’t help with mouth pain however.

His RBC actually came up a little today. the doctor is dubious about this and thinks it was an inaccuracy.
He needed plateletts again today. He gets them most everyday now. They said he may need to get them several times a day if the supply allows. The supply of plateletts is always extremely limited. Sometimes they have to fly them in from out of state. One day, a few months ago, he got the last bag in the hospital I’m thinking about going this week and donating in his name. It is time consuming, about 2 1/2 hours but worth it. Apparently you don’t have the lightheadedness etc. associated with blood donation since the plateletts are filtered out and the blood put back in.

I am over at Children’s Harbor right now writing this post.
Thank you for your continuing prayers.

John is doing better than expected at this point. However, that does not mean he is not suffering. Saturday he developed a fever. When the nurse discovered this, things hopped into action very quickly. In no time she had blood cultures, urine and stool cultures. He was put on two additional antibiotics. They don’t waste time on the stem cell floor. By Sunday he did not have a fever anymore. I forget how many hours now that they wait to make sure he is fever-free before taking him off the additional antibiotics.

He has developed mucositis in his mouth, esophagus, stomach, and all the way down. We were told this would happen. He is increasing wanting morphine for stomach pain. I was told he probably will get a morphine pump today so he can have more control over his pain. The doctors are very happy that he is still eating. That often is not the case by this point in time, day 5 post transplant.

The Purchasing Dept. went out and bought him a shower chair last week because he gets weak and dizzy when he showers. I didn’t understand why they had to go out and buy one. He has used one before on floor 5. I was told that only the rehab dept. has them. Whatever. I am grateful he has a new, clean one. Maybe Stem Cell needed one that was their own, not borrowed from another floor.

He also has diarrhea which, again, is normal. They said he will probably have this for weeks, until his counts start to come up.

I stayed home yesterday while Richard went to the hospital. I got up around 9:00 and had breakfast. I went back to bed and slept until 3:00. I guess I was tired! Last night I slept 9 more hours. I feel rejuvenated.

Saturday the doctor in the unit bought the staff, patients and parents pizzas! She ordered from Pizza Hut and when she got there to pick them up found out their score was 88! She then ordered pizza from Papa John’s, whose score was 95, for the 2 patients. I just don’t understand how he can eat pizza now!

John continues to receive cards of encouragement. Thank you so much for this. It is an encouragement to him as well as us.

Pray, pray, pray that engraftment happens soon! What a celebration that day will be when the counts start coming up!!!

We stood in line for two hours and got our flu shots today. My mom and dad came up to get Deb and they were able to get theirs as well. Deborah has next week off from school and is going on a vacation trip with her grandparents.

Here is a photo during transplant with John smiling!

It has been more than 24 hours now since transplant. John gets lots of attention. He was up and walking around the floor a few times today. The Docs are pleased with things thus far. Blood work looks like they want and John is still eating and drinking on his own. They keep examining his mouth sores and told him he could get narcotic lollipop when it starts bothering him. He has been having nose bleeds this afternoon so they got him some platelets.

He met with the therapist, psychologist, and the chaplain. We have a new Chaplain on the oncology rotation now. The last one was a great Kenyan guy from the Methodist church. He rotated over to the nursery and the new fellow is from the Baptist church. I like him too. His compassion seems genuine. Not that I am a judge. Diane and I went down to the support group meal and got to visit with the new Chaplain a good bit. Our hearts and prayers go out to a couple that have a 4 year old girl that wound up in ICU last night. They have been inpatient with her for more than 100 days. ICU is the one area I never want to be again. So many hospitals simply fail to appropriately accommodate the needs of families when they wind up in ICU. This is especially true if the stay is more than 12 hours. Maybe I expect too much excellence and compassion from intelligent well educated professionals.

Now on to the surprise we got this afternoon. One of the team members came in and asked to speak to us. We all agreed and she informed us that Mom, Dad, Siblings, and other relatives and friends that would be in contact with John between October through April need to get a Flu Vaccination. It cannot be the inhaler. It has to be the vaccine. Anyone that does not have the shot by November 1st would not be allowed on the transplant unit. Now there is a huge shortage of the vaccine. CHSYS might have enough for their employees. All the Transplant Unit employees have gotten their shots. We started calling everywhere. Our family doctor did not have any and was not getting any in. The company I work for sent out a memo today stating they would not be giving them this year. The public health office did not have any. Called our doctor friends and they did not have any and had ordered them but orders were from place that was shutdown. The Publix Grocery Store chain has them and is giving them first come first serve tomorrow and Saturday and also later in the month. The Walgreens Drug stores also would be later in the month. We are going to try the grocery store in the morning. The doctor wrote us a letter of necessity. Hope it works!

Here are some pictures from transplant unit take yesterday. Some of them during the actual infusion. Mouse over pics for descriptions!

Dreams are wierd when you are under stress and uncertainty. Last night I dreamt about the king of England. The king of England had a close inner circle of men. These men were having a meeting and were conspiring to kill the king. One of them was so close to the king he remarked that he had bathed with the king before. During the meeting a flash of light from a reflection in a mirror hit one of them in the back of his head. It was an emergency signal for him to leave the meeting and go to another meet. The fellow left and emerged in my dream in the western US on a very warm bright dry windy day dressed in cowboy clothes. It looked like Jimmy Stewart! There was awhole bunch a people there giving him a surprise party and he had 30 minutes to get cleaned up and shave before joining the party with all his friends and aquaintances. He seemed very pleased with the development.

John had bad dreams last night. He dreamt he was killed two or three times by his mom. He dreamt that she opened up a gambling house and threw him to his death from very high up in the gambling house. He also dreamt that she stabbed him. He said she killed him cause she wanted to get his glasses. He also had bad dreams that he did not talk about. I think he was pleased with how things went today. He tried to sit up in a chair at his PC but he was dizzy and light headed. So he did not stay there long. He was wanting to create a secure share of some folder. He did not want me to do it.

He is getting his first mouth sore. It is expected for him to develop mucusitis with sores in his mouth and throat. Pray that it will not be severe. We learned about a narcotic lollipop they use to treat the pain from these sores. Doc said they were raspberry flavor. John has a lot to get through now before the good blood cell production starts.

The transplant has been done now for about an hour. John did really well. No negative reactions. His BP was high this morning. They gave him a pill and within one hour it was too low. They raised his feet above his head and gave more fluids. Then they gave his bone marrow transplant. His BP gradually rose back up.

Now begins the wait for the cell production to begin. And the fight to keep away infections. We hope he will be able to come home before Thanksgiving.

Thank you for your prayers and good will!

Transplant is scheduled for 12:30 or 13:00 CDT. BP is a bit high now but all else is looking well. The donor marrow is downstairs right now.

John had many bad dreams last night but got some rest. He is pretty fiesty today. Almost argumentative. I like seeing the fight in him.

More as soon as I can later on.

John rested better last night because he did not have such severe hiccups. His BP is high and Docs are taking steps to deal with it. They are reducing fluids and giving diuretic. Also giving BP medicine again. Diane will get his blood counts and let me know later. I am trying to work but can’t seem to focus on anything. I am sure they are low as he is very weak and light headed.

Seems to be a constant measuring, analysis, and reacting to data in this process. The high BP is directly related to fluids and chemicals they have given John.

John reminds me of my Grandma Dakin. He says he is hungry. When you ask him what he wants he says ” I don’t know.” When you ask him if he wants A, B, or C to eat he replies “Maybe.”

Ok, blood counts today have really come down from weekend. This is normal with the chemo and radiation. I wonder if his bone marrow works at all now. You can see why he is so weak now.

WBC .05K

HCT 25K

HGB 9.2K

RBC 2.81K

Platelets 77K

Physical Therapy came by and annoyed John. He does not like PT. They only did a few strength tests. He is still strong. Not like when he played soccer 3 years ago but he weighs 60 pounds more due to steroids they use in chemo treatment.

It feels good that he is done with chemo now. Our minds have still not realized it. We are all so anxious about the next few weeks. John’s sisters have been affected by this more than I thought. His younger sister has been partly depressed. Probably because she was so affected by Rachel and our home life has been so disrupted. I think she will come up to CHSYS tomorrow and miss school. If she is like me she can’t think anyway.

My dreams are really strange now. Still dream about vampires. They are everywhere in my dreams. Some of my family members are vampires. Some people in our church are vampires. Some of the Doctors and Nurses and other people at CHSYS are vampires. In these dreams I am very confused and feel like my neck is constantly exposed. I also wonder if I have been bitten and am becoming a vampire. There is lots of running and hiding.

Last night I dreamt I was riding shotgun and Diane was driving. We were traveling to our new home wherever that is and Diane turned left and drove up some steps and then right up some steps. We wound up driving on a train track and realized it when we were on a railroad bridge trestle over a river with a train heading towards us. She backed up in time and got off the track but caused the train to wreck.

Also have been seeing all my extended family members in my dreams gathered together but not my son. I see my daughters but not John. All of them are looking at me for some reason. John never has liked going to family gatherings anyway. Sometimes he seems downright antisocial. Teenagers!!!!!

Just got home again. John finished the chemo today and is getting the drug that prevents rejection. He had two nurses to himself tonight and a doctor does not leave the unit. We saw doctor three times in 4 hours. Nurse got John up on scale and in shower. He was so weak when he got out he had to lie down. We just got his bed changed before he needed it. Nurses did their work cleaning the DLHC and hooking him up. He is not allowed a toothbrush and must use two mouthwash rinse every four hours. They have some sponge like tings he can use to rub his mouth and teeth. He got some meds and four Tums. His calcium is low due to chemo an dthey are using Tums to supplement. I think the doc added some calcium in the IV as well. The nurses did so many things right then I am not sure what else went on.

When John’s hiccups would start up his respiration monitor had difficulty registering the rate. He had more hiccups but not so severe. He is suffering a lot now. He asked for chicken fried stir fry rice tonight. I remembered the low microbial had mentioned no stir fry so I aske dthe Doc and nurses. They said no. John got angry because he asked the nutritionalist earlier and she told him it was ok if cooked well. Doctor told him no. He sulked a while and asked for some soup.

We long for the next few weeks to be successful and the suffering to be over. I am so tired now I can’t think of what else to write. I am sure there is more I should share but it is going to have to be later. ????

Not much to report now. Just got home from CHSYS. Did not get a camera yet. Did not like the ones at Walmart and thought the prices were too high. John was just finishing all the chemo when I left. He did get severe hiccups again. He continues to grow weaker due to counts dropping. He tried to sleep mostly probably due to all the meds making him drowsy.

He asked for red beans and rice. I made it for him and brought it in. He ate four spoonfuls. Said it was too bland. Needed more creole. He pretty much does not have muc taste now. He ate some chicken and rice soup before I left tonight.

Don’t know how I will concentrate on work tomorrow. It is the last day John will have chemo. I have longed for and awaited this day for more than two years now. No more chemo! Just a few more weeks and he will start getting his strength back. He is so uncomfortable now but they are doing all they can to help. It is funny how the chemo causes hiccups.

Yesterday was another busy day. Did not get to post. Chemo went better than expected. John slept most of the day. He has gotten a good tanning from the radiation . I will try to pick up a cheap digital camera this morning because Jewelia has ours in Argentina. Sorry for the typos and stuff. Things are pretty accelerated and stressful right now. My mind is focused on many things. I am especially trying to remember the new guidelines for the transplant unit. There are so many. Especially with the low microbial diet. Diane tried to bring in a sleeping pad to make here chair bed more comfortable. That is not allowed. If you bring in a blanket or pillow or stuffed animal it must be placed in deep freeze for 24 hours to kill dust mites. You have to wash your hands wehn you get enter unit and you must wash before you enter room. No children under 6 and no one that works with children. No one exposed to any illnesses including colds. Not more than three visitors and only one of us can spend the night. Diane is designated for the over nights. He has been well enough thus far to not allow us there. Praise God!

I stopped and got doughnuts for the nurses station yesterday morning and when I got there John was done with chemo and sleeping He slept mostly all day. I went into family room to inventory. It was woefully lacking. There were no cups or glasses. No plates bowls or dishes. No dishwashing detergent. No dishwashing liquid. No laundry soap. No coffee. No tea. The coffee maker was typical of what I have found at CHSYS. They are awful. I have yet to find a clean coffee maker. I worked on it for about an hour and still was not satisfied with it. It is just a cheap Mr. Coffee so I am thinking of replacing it. Still did not get it clean enough to satisfy me so I did not make any. Instead I made a list for the store.

I got hot and cold cups, plastic silverware, and assorted other essentials. Spent well over $100 and still was not satisfied that we will be comfortable. The family room is large. It has two round tables with 3 chairs at each and three loveseats and a shelf with reading materials and board games. It has a microwave, sink, fridge, dish washer but no dishes, clothes washer and dryer, bathroom with shower, and small TV and VCR.

I expect a higher quality level of service from CHSYS than I receive in the area of comfort and amenities. I understand the level of services provided is higher than many other facilities. This is just a woefully enlightening indicator of how pathetic health care service providers tend to be. With all the interdepartmental politics and convoluted guidelines based on principles other than quality of life and service enhancement I am pleased with the level of service we do receive.

Late in the afternoon John finally woke up. He and I got to visit a bit and worked on getting web browser access to his computers. CHSYS provides an ethernet jack in the room on the transplant unit. We obtained an IP adress from a DHCP server and were able to use Instant Messaging. John was using AIM to chat with his friends. These services are essential for todays youth. My daughters have limited computer interest and they depend on IM and email daily for socialization. John and I familiarized ourselves with the network architecture and determined port 80 access out was limited. I called the CHSYS IS help desk and got some typical bullshit and asked for escalation to CIO and asked for ISP service in our room. We found on our own that https access was not limited and we routed our port 80 traffic to an external port 443 proxy. This gave John a slower but usable access. All he wanted to do was stream the Presedential debates to his computer. He has a great mind and is extremely interested in pol;itical science as well as other social and anthropological sciences. He then prefered to be alone. His mother pleaded with him to let her stay the night but he is 18 and does enjoy being apart from old fat people that snore during the night.

Thank you to everyone for your prayers. We are anxiously counting down till transplant and are looking so forward to the day when his blood counts come back up to safe levels post transplant. Our family will be trusting Jesus and emotionally anxious for the next few weeks. The stresses we are experiencing are indiscriminant extractors of life forces and resources. They demand attention to detail, attention to phsycho emotional resource and capacity, attention to and availablility of financial and logistical resources, patience and longsuffering, compassion that correlates to action, gentleness and wisdom, forgiveness and understanding, steely determination and grit, and God only knows what it is doing to our bodies. We need and have need our church, family, friends, and community more than we could have ever imagined. We are people who need people.

John gets chemo in a few minutes and tomorrow he will get the last chemo he will ever need to take! That is an amazing thought. I will try to post from the room if John permits.

John did well on his chemo today. He is feeling better than expected, praise God. One of the chemo’s side effects is hic-ups! Unfortunately, he had this side effect and hic-upped a lot today. He also sneezed an awful lot! He wanted us to leave tonight and not spend the night. I practically begged to stay, but to no avail! I am grateful for this though. It means he is feeling well enough that he doesn’t need us there. Too many nights he’s been too sick to be left alone. He was complaining of a headache, nausea and his esophagus hurting when we left. This is in part due to the harsh hic-ups he had. His nurses are awesome. The care is wonderful and so attentive. His nurse he had last night was commenting on how much she enjoyed caring for him. She said he was a really great guy and she enjoyed being with him. She has him again tonight. The nurses on 7 Floor miss him and always want him to visit when he is coming to the hospital to go to clinic. He wanted to walk up there and visit last night, but he is not allowed to leave the unit because of exposure.

Richard went and bought some groceries to have in the family’s room kitchen. We don’t have a stove, but there is a microwave. We are fairly well stocked there now with frozen dinners, lunch meats, etc. This should help with expenses.

It’s another day down and closer to transplant.

Yesterday was very busy and long and I am hurriedly posting this because it ti almost time to head back to CHSYS. I went staright to the radiation clinic to meet John at 9:20. I got there about 10 minutes after nine and John got there at 10 minutes after 10. THis was due to problems with transport department again. One of the unit nurses was with him when he arrived. It looked and did much better during the morning radiation treatment. We had to wait over an hour for the transport to come back and pick us up when it was done. We got back to the unit around noon.

The doctor checked John out and apologized for the problems with transportation. John decide on some lunch and I ran out to get it. He ate half of it when I got back. We had meetings with the nurses explaining the guidelines for us to follow up on the transplant unit. No live flowers or plants or ballons allowed in the unit. John is on a low microbial diet now. He wanted a salad. No Salads. No visitors under age six. No sick people. No visitors that have been exposed to sick people and exposed to children under age six. And many many more rules. Like we have to wipe down exerything we bring in with anti bacterial wipes.

We setup John’s computers and got them on the network. Could not get out with browser or port 80 requests. Called IS help desjk and told them to escalate. Instant messaging was working though.

Pshyciatry department met with John and I. They split us up and asked a bunch of probing questions.

Transportation was on time for the last trip to radiation. We got there and they pushed John to the clinic in a wheel chair they brought over. John did really well and he got done in an hour. I fell asleep in a chair in the waiting room and had a dream I was travelling. I would juourney and journey and journey and when I would get to where I was going I was back at the place I started. Hmmm…three journeys on seperate paths to get to the sameplace.

When John got out we were supposed to call the transport again but John did not want to wait. It is only one block back to CHSYS, he was in a wheelchair, and it was a beautiful aAutumn afternoon. So I just pushed him. He enjoyed that and really seemed to appreciate it. After we got back the doctor checked him and he was ready for alone time. I went into the family room and waited for Diane to bring supper. I was glad. We came home and I got to visit with Deb before I fell asleep.

Got to run it is now four days till and John gets chemo in a few minutes. John was doing much better with blood pressure and strength. Thanks for your prayers!

We have been having interesting birthdays this month. On mine, Sept. 16, Hurricane Ivan came through and knocked our electricity out. Banks closed, schools were closed, stores, the mall, major businesses, all closed. Sept. 28th, John’s b-day, he had surgery and got a brand new Hickman Catheter. Today, Sept. 30, Richard’s birthday, John was unexpectantly admitted a day early.

Before I begin, I want to thank all of you who sent cards and well wishes to John! The response has been overwhelming! He got more cards today! He even got some homemade cards from a 5/6 grade Sunday school class. I know he appreciated them all so I will thank you on his behalf. He eagerly has been reading them. Thank you also for the gifts. You have big hearts.

I am so very tired that I can’t go into a lot of detail. John had a hard time this morning. His blood pressure was low, causing him to be weak and dizzy during radiation so he couldn’t stand long. They had to keep stopping treatment so he could lay down. They gave him a 1/2 liter of fluid to help stablize it while we were at UAB’s hospital. They determined that his b/p was so low due to the blood pressure med they put him on last week to help his heart. Interesting, because last night as I lay in bed going to sleep I decided I needed to talk to the doctor about that med. I thought it would have this effect on his b/p because he generally runs low. I wanted to ask her about lowering it. As it turns out, they took him off it.

After radiation we went to Children’s. There he received more fluids and was monitored all day. His primary doctor, Dr. Sande, was extremly attentive. I was very pleased. He also was very nauseous. He took 4 different meds today for it.

The transplant doctor and a transplant nurse came back with us to radiation at UAB in the evening. We were told the Children’s Hospital Stem Cell Van would be waiting outside the hospital to transport us all. When we got outside we found out the van was “lost". The parking people didn’t remember where they had parked it. We waited and waited and Dr. Sande and the nurse got more and more frustrated. Finally, what ended up happening was that I drove us over in my car! So many bizarre things, and comical things happened after that. I’ll have to write them down when I become more coherent. While John was being treated, the nurse, doctor and I just visited. That was nice, but rather unconventional. But I like unconventional. The treatment went better in the evening. He went back to Children’s to get 1 unit of blood and be monitored for a while. He was told he was stable enough that he could go home if he wanted, but he needed to be back at 7am tomorrow. He decided he would get more rest there because he could sleep longer and also he could get i.v. fluids all night. He did not want anyone to spend the night with him. I’ll start spending the night tomorrow.

While I am disturbed by the suffering John has experienced with radiation, I am by no means alarmed. I am glad I prepared myself in reading to know that all this can be quite normal. We now have entered into a new phase of “Normal".

It is interesting the precautions they take with the stem cell patients. Everything needs to be wiped down with antibacterial wipes before it enters his room. He can only have bottled or filtered water, no leftovers. They wouldn’t allow anyone else on the elevators with him. Extreme caution needs to be exercised with people who are in contact with children regulary because of the risks they propose. John didn’t want any party on his birthday because of risks he would be exposed to so close to transplant. He will be this way for months now. The 100 days post transplant are especially fragile. Things I have not considered a threat now are. Interesting enough, the doctor said the dog can stay. I would like John’s dog to have another home for a while. However, the doctor indicated that it would be better to keep her rather than get rid of her for a while then bring her back in. She said she could then be a carrier.

I’ve written much more than I intended, doubtless with countless typos. Forgive them. I simply must get some sleep now.
Bless you for your faithfulness.

John got done with radiation and back over to stem cell around 7:15 CDT. I came home after work and wiated Diane’s call. She called and confirmed John was staying in hospital. He has to be back at 7 AM for IV fluids. He is doing better. Seems they gave him some steroid that helped raise blood pressure and reduce nausea. Sorry can’t remember name. Diane will have to post what happened this afternoon. I would not be able to do it justice.

Bottom line John is more stable and is inpatient for next 6 weeks or so. Last two radiation sessions are tomorrow. I have gathered up a list of things John wants me to bring up to CHSYS tonight. Of course his computers are included. I have everything together and am about to head out. I will edit and fix typos ect.. tomorrow if I get a chance.

John is having trouble with his blood pressure today. The first radiation treatment had to be stopped and restarted a few times because John was so weak. They kept giving him IV fluids to try and get his blood pressure up. They attribute this to meds. He made it through the radiation treatment and got more fluids in the stem cell unit.

He is going to be admitted today instead of tomorrow. He has been having chills and shakes this afternoon. They have taken blood to culture looking for infections. They are concerned he will be too weak if he goes home tonight. I think it is wise to admit him. He is being a difficult patient though. He wants to go home and listen to the presidential debate between Badnarick and Cobb on the internet.

The doctor in charge of the transplant unit is going to the second radiation treatment with John this afternoon. They are concerned with how poorly he is doing. They will put him in the room he will occupy for the next six weeks when he gets done with the radiation. I will try to post again tonight when I know more. Please pray for John to get stabilized and make it through the radiation tomorrow.

Another long day! John’s first day of radiation. It was extremely difficult getting him out of bed this morning. He was hurting from surgery and a long day at hospital. Finally got out of here half an hour late. I went into work. Trying to save days off for when really necessary.

Deborah called from school sick. Needed someone to come get her. By the time I got the message she was already on her way home. Thank God for a good church that is close by. Deborah had a migraine and was ill. When I brought her lunch she was sleeping. She rarely naps. No fever!

John, Diane, and I got home within five minutes of each other. John came dragging up the walk. I could tell he felt awful. He looked like he had been at a LAN Party like LANWAR’s Million Man LAN for four days. He was really dragging. He went straight to his room and got in bed. I checked on him 10 minutes later and he said he was nauseated and hurting and did not want to eat. I checked on him again 30 minutes later and he was sound asleep. We woke him an hour later to give him his meds. He said he just wanted to be alone and sleep.

I am so proud of him. He is so courageous going through all this. The doctors had to check him out during the first radiation this morning cause he was short of breathe and weak. They determined it was from the surgical trauma he experienced yesterday. He also visited the dental clinic today. There were no problems with his teeth. After the morning radiation he spent most of the day in the Stem Cell Transplant Unit. They gave him IV fluids and tried to make him comfortable. He went back for radiation at 5 and then got home after 6:30. Another long day. He gets to do it all again tomorrow. All except for the dental visit.

Diane was entertained by a psychological test they gave John to take this afternoon. It had many probing questions that John had little difficulty with. Let me see… Diane said they were like:
1) Do you hear voices in your head?
2) Are you afraid of getting cancer?
3) Do you see weird things?

If you know John, then you know how literal and analytically he would answer. By the way has anyone ever heard a voice anywhere other than with the ears in their head? Hmmm…

Well we have reached the point of no return. John begins whole body radiation today. I have prayed for this to not be our cup to drink, but it seems to be the best course to take. The Lord knows John’s grit and determination to succeed in this battle. And we are supporting him all the way.

We arrived for one day surgery checkin at 6:40 AM yesterday. He played on the gameboy and I rocked in a glider. They got him back to a room around 8 AM and they accessed John’s ortho port for the last time. Don’t know when they took him back for surgery but Diane and I waited in the room and the surgeon came in to tell us his work went well around 10:15. John got back from recovery around 11:15. He wanted to eat! Diane and I went to Chan Lee’s and got food.

We had to go down to the Hillman Bldg. for the echo test next. John wanted to walk. This surprised me a bit but I was glad he could do it. It is only 3 blocks and I struggled more than he did. The boil on my forehead was causing me enormous amount of pain. The kind of pain that takes your breath away. It would shoot from my forehead up across the right side of my head and towards my back. The doctor said the heart echo test looked ok. It was around 56% flow but it is an imperfect test.

We headed back to stem cell unit to meet with doctor, do paper work, and other prelim. stuff. They took two vials of John’s blood. With John’s permission this is used for research. John granted his permission for the blood and they drew it through the newly implanted DLHC. We were the only patient up in the Transplant Unit yesterday. I was glad. I do not want any other children to be forced down the path of being a cancer patient.

John had to sign four or five consent legal mumbo jumbo forms. It took him over an hour to read them all. Don’t know how he stayed awake. He was so tired. We visited two nurses, one nurse practitioner and two doctors in the transplant unit. I liked them all. Not sure what John thought. He was very quite. I asked most of the questions during the discussion. It brought about much conversation and John seemed interested in the information. He seemed to get a bit put off when the doctor told him to think about and develop a predetermination concerning life support and life termination choice, should things get really nasty during the process. She said it with the gaze of one who had been there facing the bitter end for someone subjected to circumstances beyond the capabilities of any human intervention. I get the impression John and the doctors are not entirely comfortable with the reality of being subjected to the perfect will and judgment of a loving holy Sovereign.

All of this is another instance of being that I did not feel prepared or qualified for. Like when we had to discuss with our son making the choice to donate sperm because the treatment that he was facing would probably destroy his ability to have children of his own. Most parents are not even comfortable discussing sex acts and the consequences of sex. We were discussing whether or not to keep him alive on life support if it came to that. He seemed extremely uncomfortable. Maybe it was just pain from the surgery.

John has radiation twice today. He will get to spend more time at the stem cell unit between doses. Then he does it all over again tomorrow. He then does it again on Friday but then he stays in the unit for the next 6 weeks. The first 3 weeks are the most critical. He must remain free from infection and a myriad of other hindrances to success.

Thank you everyone for all your prayers and cards and gifts. You brightened our day. We need you all to continue support us in this fight. We have been in this struggle for more than two and a half years now and we are facing the most difficult battles in the next few days. Thank you again and God Bless you abundantly!

Here are a couple of recent photos!

Thank you to Jesus and everyone that has supported us in prayer. The results of the MUGA test showed 53% blood flow. This is just above the lower acceptable limit. The schedule is altered, but transplant is back on. We will reschedule surgery tomorrow for either Monday or Tuesday. They are trying to get the kidney test done tomorrow. John will begin radiation on Wednesday morning the 29th and go inpatient at the transplant unit on the 1st.

John will turn 18 on Tuesday. We tried to avoid scheduling anything that day but if it is the only option for surgery we will do it. John does not seem to mind. I am concerned and confused by his attitude sometimes. Maybe this is normal for the father of an 18 year old male.

We will keep you posted. Praise the Father, Son, and Holy Ghost!

Sometimes I am reluctant to post updates because things change so quickly and constantly in the current methods of cancer treatment. We had another set back yesterday and I really do not know the WHs any more. The who, what, when, where, why, and how seem to be constantly changing. Here is a best effort attempt to update!

John had a series of tests to determine baselines before proceeding with transplant process. Seems to me this should have been done before we went to radiology last week but I am new to all this. The test to determine the flow rate of the heart showed that it was at 36%. In my understanding this means that the heart expels only 36% of what it has taken in. This must be above 50% for the radiation and chemo needed before transplant can be done. Some of the intensive chemo drugs John was given to get him back into remission cause this to happen. Sometimes it is permanent. Sometimes the heart function improves. This rate was above 50% in July.

We are going to the heart specialists at UAB Kirklin Clinic tomorrow for a MUGA Heart Test. This is supposed to give the docs a better indication of John’s heart health.

The surgery to remove the ortho port and implant the DLHC(Dual Line Hickman Catheter) is scheduled for Friday. This will probably be cancelled. When they determine if John can have transplant then we will reschedule. We might know tomorrow if the surgery should be done anyway.

We hope the oncology doctor and the transplant doctors are communicating well with one another. They will have to work out new schedules for us. Right now I think John will have another test on Wednesday the 29th to look at the heart function. If it is still too low he will be admitted for chemo. If it is within tolerance then I don’t know the schedule.

We were supposed to have surgery this Friday. Then meeting with transplant team on Monday the 27th. Radiation was supposed begin on Wednesday the 29th and admission to the transplant unit on Friday the 1st. Now only God knows. Guess He was the only one to know all the time.

It is extremely difficult to express the intensity of the emotions we have been experiencing. We have been intensly excited and at the same time anxious about the upcoming transplant. We are always anxious before , during, and after surgery. We have been setting our hearts like steel over the past few weeks. John has been on the recovery cycle from the chemo and doing well at home. Almost normal but still not well. We try to not let emotion and circumstance influnce our attitudes and actions. Prayer, prayer, and more prayer was the immediate response yesterday. It is difficult!

We survived Ivan! We were out of electricity for around 12 hours, but we did not have any damage, other than a few branches down.

John’s 18th birthday is September 28th ! The day after he begins radiation and on October 1st he is hospitalized for his bone marrow transplant. With everything he is going to be facing for transplant, we would like to give him a good birthday. Would you consider helping by sending him a Happy Birthday card? I think it would mean a lot to him to be showered with well wishes and to know so many people care about him. I am amazed by how many hits we get on this website weekly and if even a portion of you would respond that would be wonderful.

Please respond to:

John Dakin

4808 Keith Drive

Birmingham, AL 35242

Figure I better post this before Ivan knocks power out. We had a really long day and I am quite fatigued so if I don’t make since forgive me. I will check back and edit later. John had an appointment at Radiology this morning. We spent over 3 hours there. We met with doctor and they explained process and answered questions. They examined him and marked him where he gets positioned. He is going to get full body radiation. It is not an extremely high dose. Just enough to kill all the stem cells in the blood and marrow. Unfortunately it also kills some stem cells in intestines and places you don’t want to harm. They pulse the exposure to the lungs because they found it is harmful to the elasticity of the cells in the lungs. This limits the lungs ability to expand. They also did a simulation shot with x-rays today I think. Sounded like they knew what they were doing and they were all very nice. Seems some of the understanding for the development of this technology came from atomic bomb victims. I have always been grieved by the knowledge of our country using such a weapon on others. It is errie to think knowledge gained from such atrocity and suffering could be used to save my only son’s life.

Our schedule is overwhelming the next few weeks. First of all we have to make it through the hurricane. Then next week sometime the surgeons have to remove John’s ortho port and install a dual line Hickman catheter. He will keep the DLHC for approximately 100 days. He has appointments on Tuesday to go through several CT scans, EKG, and other screening test. They took 10 vials of blood for labs today in transplant unit. They look at everything. He also has to visit the oncology doctor on Tuesday because he is still doing chemo.
John also has to have a dental exam. He is schedule for another radiology visit as well.

We learned so many things today about this process and our schedule. The last week of September John will have his final pre-transplant meeting with the transplant unit on Monday. John will turn 18 on Tuesday the 28th and the on the 29th he will begin radiation. He goes into radiology in the morning and the exposure lasts about 4 minutes I think they said. He goes from there to the Transplant unit to hang out and get monitored. Then he goes back to radiology in the afternoon for another exposure. He will then get to go home. Then on the 30th (my birthday) he repeats the process. On October 1st he does the same thing but he is admitted to transplant and stays for the duration. He then gets chemo each day and anti rejection medicines for 3 days. On the 5th of October he just get the anti rejection medicine and then on October 6th he gets the transplant. There are many serious side effects to all they do in that last week of September and the first week of October. He will be feeling pretty puny then. Please pray for the no ill effects and/or reactions to the meds. We are relying on the unseen hand more than anything else now. We dedicated john to God’s care and service as a wee baby. The Lord Jesus paid for our sins and our healing. His will be done!

Minimum hospitalization will be 4 weeks. They say 4 to 6 weeks. Worse case is several months. Costs associated are huge but undeterminable due to the complexity and indeterminate value of variables. Actual transplant of donor tissue is scheduled to take place on October 6th. We were told it is pretty anti climactic. It is just like getting a blood transfusion. The new marrow knows where to go and what to do. The process of harvesting the marrow is a bit more taxing on the donor. He will get several needle penetrations of his hip bones. He will have some soreness and recovery to deal with.

We also met briefly with the physcology persons today. They will also be scheduled in over the next two weeks to spend time evaling John’s IQ and estblishing a nuerological/cognitive baseline for post trauma comparision.

I know I have left out many bits of valuable information. We were at radiology for hours and at transplant for hours. So many questions were asked and answered. So much has been planned and is being planned. My confidence is in the Lord and His perfect plans.

We packed up the car and headed into CHSYS this morning. As soon as I got in the Doctor wanted to talk to me. He pulled me aside in one of the lab rooms and told me he had met with head of transplant team and they decided since we were so close to transplant that it would be better to make this chemo round a bit milder than originally planned. The chemo he was going to get requires hsopitalization and would totally stop his bone marrow function. the chemo they are giving instead is oral and does not require inpatient.

This was great news. We could go home. After they got John’s blood work back Doc was so happy. His marrow function looks normal and all his other blood work looked strong. We had a really good day. Came home and upacked the car and took a nap.

We got our appointment with Radiology confirmed and the chemo meds from the pharmacy. The appointment is at 9 AM Wednesday and then we meet with the transplant docs. They said radiology would examine John and mark on him where he would get the radiation to kill all his marrow. We are still on track for October 6th to do transplant.

We are happy today! But we will rejoice in the Lord even when things get bad. All this is only temporary!

John had a spinal and a bone marrow biopsy today. The results were good! No cancer cells! Halleluiah! There is still no word on the donor. We should know something this week. I must have been stressed about the biopsy results today because I am very fatigued now. I’m relieved, but tired.

We did not know John was scheduled for a spinal today to check for abnormal cells. As a matter of fact, neither did his primary care oncologist. There was some confusion about getting it done. Apparently the transplant doctor wanted it, but that wasn’t communicated effectively with the clinic until we got ready to go up for the BMA. It was another case of the different departments not communicating well with each other. John’s doctor was not happy about not being told about this earlier. I was not happy because I always bring in a certain type needle for them to use that virtually eliminates spinal headaches. The pain clinic I work at has much success with this different type needle. Since John switched, his headaches decreased dramatically. Today, I walked into to clinic and the man who does the procedure asked me if I had the needle for him. I was like “Why do you need it? He’s not getting a spinal.” Then all the confusion began. We prayed and asked God to grant that he wouldn’t have any headaches and the procedure would go well. After it was over we requested that he get an i.v. to hydrate him (he was NPO since 2am and he didn’t hydrate well the day before as usual), and I gave him a caffeinated drink. Praise God, it’s almost 9pm now and he’s headache free! As a matter of fact, he went out to the store for a minute with Richard tonight!

We just got home from a long day at CHSYS. Blood work looked good. Cyst looks good. Doctor seemed pleased. When they brought him up for bone marrow aspiration they said they were doing spinal as well. John got paged over intercom but the number was busy. Doctor came up and found me to let me know the transplant team requested the spinal. He seemed angry and bit frazzled. I have seen him get upset before at the poor communication between departments there. We did not get John to drink and hydrate a bunch before we went in because we did not know about the spinal. We did not bring in a Sproight needle either. We asked John if he wanted us to go get the needle but he said if it delayed the procedure then no. He took his chances with the old spinal needles. We asked for him to get IV fluids when we got back down to the clinic to hydrate him some. It helps to not get spinal headaches.

Ok results got back to us around 1:30 PM CDT. No obviously visual cancer cells in bone marrow. The doctor seemed very happy now. He said if transplant team does not get donor ready we will have to do a round of chemo in patient next Monday. Only three days though. VP16 and ifosphomide. Yuk!!!!!

I am still hoping Diane will get to go away fro the weekend with her friend Renee.

Thank God for no cancer! Pray for right donor match and no ill effects from treatments. He is still on two antibiotics, antacid, and antifungal

Bone Marrow Aspiration tomorrow morning. John will not be allowed to eat after 2 AM and then we go into CHSYS in morning. This is to check for cancer cells in the bone marrow smear. Our house will smell like food at 0130 tomorrow morning. I wonder what he will want. We will post the results of the smear as soon as we can. It will show no cancer cells.

We meet with the radiation and transplant teams next Wednesday the 15th. Basically this is to map out the scheduling and make sure we are all on target for the process. John goes in for radiation twice and then a third time. Then he goes inpatient and gets chemo and then the transplant. Some where in there he gets a Hickman catheter surgically implanted. We will get that all worked out next week in the meetings we hope.

Diane and I continue to have nightmares every night. Mine involve great struggle, fighting, pursuit, and being victimized. This is a time of extreme anxiety for us all. Prayer is difficult for us now. We find it hard to focus with our minds on anything. Prayer also seems redundant. We are continuing to endure. I am hoping Diane can get away for a couple of days with her friend Renee later this week. She will be pretty much locked down for a couple of months when the transplant process starts.

We enjoyed the weekend. John felt well enough and played console games and Mahjong with us and it was good just being together. I hated to see it end and none of us are looking forward to tomorrow. It has been so good having him home. We took a walk yesterday afternoon and the dog wanted to stop at every mailbox on the street. She seemed so intent on smells at times. John seemed amused by it.

I’m taking a break from sitting down in clinic with John. We went to our family doctor today for blood work and found out his HCT was 22 and platelets 7000. So, on we came to Children’s for some blood and platelets. We’ll be here till around 7 tonight. He’s doing pretty well. He had some bleeding this weekend so we figured his counts were low. However, his white count is improving nicely. No surprises here. Everything with his counts is going as expected.

We found out today that the potential donor was not going to work out because of vague medical considerations. This is an excerpt of a letter I received today from his doctor:

“We learned Wed. that the donor that we had
requested for John has been
temporarily medically deferred. This means the
donor has medical issues
of his own that make him an unsuitable donor at
this time, either for
his own safety or for John’s. We immediately
urgently activated 4
additional donors, all of which look very
promising. I want to reassure
you that we are still planning to be able to do
the transplant in the
time frame which we discussed last Friday, and
that we are doing
everything in our power to make it so.”

I’m really struggling over this. I read the doctor’s email and I was devastated, such a roller coaster ride. I want to take my family and run away some place safe, away from all this. Some place in the forest where no cancer exists, only beauty and tranquility. I just want this all to be over. I want John to learn to drive, cut grass again, host LAN parties, etc. I want John to have his gorgeous hair back.

He has such a great shaped head! We used to have a neighbor who was 87 years old. John was about 6 years old at the time. That sweet lady used to rub John’s head all the time and tell him “You have such a nice shaped head young man!” John reminded me of that recently and I just laughed and laughed. If she could only see him now!

Richard has such a good attitude concerning this new development. He was encouraged and grateful the process is thorough enough to catch a potential problem. I am so grateful for his insights in these matters. They bring me balance. God has blessed me with an incredible husband.

John’s had his blood count taken at the family doctor today. Can’t believe how fast things change as a result of the Chemo he received last week. Two days ago his WBC was at 13,000 today it is at 400, normal is 4500-10,500. His ANC, Absolute Neutraphil Count, was at 11,908 today it is at 0. So, essentially, he does not have any infection fighting cells now. This is expected to change rapidly as a result of his shots. He did go to the eye doctor today and they were very accommodating. They isolated him so he wasn’t exposed to the other patients and they sterilized everything he was in contact with. We have to be very careful and limit his exposure. He’s in good spirits, but he was disappointed because he wanted to do some shopping today. We’re so close now to transplant and wisdom tells us to not jeopardize his health. Why take unnecessary risks?

Still haven’t heard anything more about the transplant.

Today has been very enjoyable being with John. This morning I took him to our family doctor to get his CBC drawn. His counts look good. His HCT is 30, which is almost ‘normal’. His WBC is good thanks, no doubt, to the daily shots he is given to stimulate production. The family doctor will fax the results to Children’s Hospital and the Oncologist will call if we need to come in for blood or platelets. But we won’t need to with his counts being so good. We go back in for another CBC on Thursday.

Afterwards, we went to his barber to get a shave. He had some fuzz that grew in the 3 weeks he didn’t have chemo. Now he just looks like a normal teenager. So many guys are bald as a fashion statement these days.

We went to a gaming store for him to spend a gift certificate from his barber, Miss Joy, then out for ice tea, and finally home. Richard came home for lunch and we had a nice time visiting. We got to visit a lot today and it was so enjoyable. The errands around town didn’t overly tire him out.

Doesn’t seem like much maybe to some, but a ride around town that doesn’t include a trip to the hospital is Heavenly.

We are so thankful to God for these good days. They strengthen us.

Just a quick post. We got John home around 10:30pm tonight. His discharge was delayed because it was determined he needed 2 units of blood. Yesterday he got 3 units and it only brought his rbc up by 2. So, he is tanked up enought to make it through the weekend! He goes to our family doctor to get his blood checked on Tuesday then again on Thursday. We begin the G-CSF shots tomorrow. We were cautioned again and again to watch out for fevers. How well we know.

He is doing well. The closer he got to home the more he talked. He had the option to stay tonight at the hospital, but strangely he did not want to. :~)

Chemo is going fairly well. Does that make sense? How can I really say that the process of injecting poison into my son is going well? Maybe I should say “This time the toxic substances are not making him as sick as it has other times”. He is irritable, very sleepy and nauseated, but the nausea medicines keep him from getting sick. Today he wanted me to bring him a club sandwich. I did and he was disgusted because I let them put mayonnaise on it. Days like today its better to give him his distance. He wanted me to go home so he could sleep. When he feels fairly decent he really dislikes people being there all day long. So I left around 3:00pm and reminded myself over and over it was good he feels well enough that he doesn’t want me there, even though it pains me to leave. When he feels awful he wants the company and help. Pretty soon he and I will be spending our days and nights together for weeks on end.

He got another card today from his Great Aunt Karen and Uncle. She amazes me. She has sent him a card weekly for over 2 years. What faithfulness.

Richard and I have been very anxious about the transplant. John doesn’t talk about it. I had hoped he and I would talk a lot this week he is inpatient. Usually, we have good conversations about a variety of things when he’s in the hospital. This time, however, he has either been sleeping, too nauseated or too irritable to talk. I’ve been learning a lot about him. He is an incredible individual. It has been difficult learning to make the transition in my relationship with my children from treating them as little children to communicating with them as young adults. I need to respect their views and autonomy as individuals. I find the less I offer my advise the more it is sought.

Deborah seems to be adjusting well to her new school. This week she has come home from school smiling and talking. Tomorrow she is riding to school with a new friend. I’ve been proud of her. She’s been forcing herself out of her comfort zone and making new friends.

I’ve been chatting with Jewelia on the computer. She misses us. She is studying abroad this year in Buenos Aires, Argentina. All her classes, except one, are in Spanish. She sent us a postcard and I was surprised to see the sheer expanse of the city! It is the 7th largest city in the world. She really is big city material. After living in Atlanta and now Buenos Aires I hope she doesn’t find Birmingham too small a place to live.

Tuesday August 17th took John into clinic and admission for the next round of chemo. His counts were good enough to admit him and start chemo. There was one issue of concern. The blood smear showed some immature or blast type cells. The Dr. said this could be due to the GCS-F injections we were giving John at home. This Growth Control Substance is used to cause white blood cell production. Dr. said it can cause immature cells to be forced out of the marrow and into the blood. The other possible cause ids the cancer we are fighting. They scheduled a BMA (Bone Marrow Aspiration) for September 8th to look for cancer cells again.

John’s cell counts looked good and the cyst is still healing and does not look infected. The rash he has been having on his skin was called “unspecified” by the Dr. Dr. did not seem to be concerned about it. He said John looked good. Dr. knows I don’t like the use of that vague, ambiguous language and terminology. I made myself scarce to avoid getting into trouble. Have been very anxious and have tendency to be sarcastic and starkly harsh.

They started chemo within an hour of getting in our room. He gets one dose over six hours three times a day. It can be very harsh on the eyes and they are giving him eye drops four times a day. He also gets another chemo drug but I don’t remember the schedule. Diane is much better with schedules and drugs than me. John complained of nausea about an hour after they started.

Admitting seemed very busy and it took a few hours to get John a room. They actually got him up on his requested floor. He seemed happy about that. He went right to sleep when we got in the room. Don’t know why but the RA gave me the forms the nurse usually fills out. We have been admitted many times and I always remember the nurse coming in and asking us all the questions and filling out the form. This time I filled it out myself. Good luck reading my handwriting. lol

As many times as we have been in there it seems like the processes are constantly being changed. Like filling out the questionnaire. And the parking deck procedure is always changing. I try to do things correctly and not get frustrated. The procedure I have been taught is take a ticket when I go into the deck. Park in a place not reserved for handicapped or doctors. Bring ticket with me into the hospital and stop at the little parking ticket window when I leave. Wear my green parent of child arm band and write name and room number on ticket. Give ticket to attendant and get a swipe card to exit. Swipe card sometimes works and sometimes does not work. So I usually go to the attendant in the little booth that takes peoples money that are not parents. Last night the attendant at the garage exit asked for my name and room number. That was new. I left to get John a meal 3 hours before and she did not ask for my name and room number. Hmmmm???? Why is it always different? Sometimes the gate is open and no attendant. Sometimes no attendant and I flip the call switch and ask for the gate to be open. Sometimes no one answers the call switch and I just pay a dollar and the gate opens. How can such a simple process become so convoluted with variances?

Don’t take this as a negative. Everyone is very nice during these interactions but I always wonder why? I also feel guilty for breaking a rule or process because of my ignorance. Maybe it is not my fault after all.

Did you ever wonder why Jesus said nothing when He was openly and wrongfully accused before His crucifixion? Seems a lot of people had expectations for Jesus separate from the Fathers will. I am glad He chose to be motivated by the love of the Father.

John is scheduled for inpatient chemo tomorrow. The “normal” process for us is to go into clinic get blood work up and exam. If counts are high enough then we get admitted. We have experienced great variances in “normal” process. Blood cancers are not predictable and the chemo treatment method is a very reactive process.

We received this news today via email from the chief of the transplant unit:
“I am told by my new partner that one of the donors we were looking at for Johnathan has been confirmed a match. Kathy L., our nurse coordinator, has asked that the donor be taken “straight to workup", which is our way of saying we are expediting the process as much as possible. I will confirm with Kathy tomorrow. We will stop by and see you and Johnathan again while he is in the hospital. If all goes well, and the donor is cleared, we should be ready to go to transplant by about the time he has recovered from chemotherapy. We will begin planning his pre-transplant testing this week, in coordination with you, of course.”

This is very good news! It makes me extremely anxious though. Many of you know me pretty well and know that my faith is not in the wisdom of man. This bone marrow stem cell transplant process is exciting, fascinating, and risky. In my mind I reason that…Since we do not know the cause and source of the Leukemia, we really don’t know that these drastic measures are prudent. It is like resorting to a complete reinstall of the operating system on your computer when you have a memory leak problem caused by some unknown segment of code. You hate to do it and you are putting a lot of faith in the backups of your data and applications. And even more faith in the new operating system install to not contain or be susceptible to the bad code. I know that is a simplistic comparison.

Having accepted Jesus when I was eighteen and received the baptism of the Holy Spirit before I turned nineteen and being delivered and set free from great bondage, religion, and corruption and falling in love with the Father, Son, and Holy Spirit (Jesus is His name) and endeavoring to walk with Him, please Him, and get to know Him for the past twenty five years, I have become minimally acquainted with the enormity of His knowledge, wisdom, love, and grace. To compare man’s wisdom to Jesus’ wisdom would be comparing the tiniest speck of sand to the entire Milky Way Galaxy. We are not even close. We are not even remotely near. We are but a finite miniature likeness of Him and His infinite wisdom and glory.

Another thing I have learned during my walk in the way is that He has never ever done anything but good for me and you and all the rest of earth’s lowly mankind. Mankind in our ignorance, disobedience, rebellion, sinful nature have caused all the illness and ill will that exists. Guess since we caused whatever it is that creates leukemia cancer cells, maybe it is appropriate for us to use man’s drastic methods to treat it. After all it seems inapproriate for us to break God’s laws and expect Him to take up the slack. He has already done it once and for all in Jesus. Even Jesus did not break laws of nature and expect God to make it right. Though He was tempted to do so by His enemies. I am still ashamed that my faith is not great enough to produce a creative miracle and overcome our doubts and fears. My heavenly Father speaks and life, universes, and order become manifested evidence of His faith. We speak and death, corruption, and fear is created. For life and death are in the power of the tongue and the tongue is a fire. Thank God for the shield of faith whereby we can quench all the fiery darts of the evil ones.

Perhaps for us to seek the manifested power of God’s faith is the same as Satan seeking to be as glorious and powerful as his creator.

Sorry for the rant!
My mind is torn and twisted,
My heart is a great canyon flooded, wet, and ablaze,
My will is broken, shattered by fear and love,
Yet even still there is a knowing,
A knowledge of Him, His great power, and love,
Even still He lifts me,
He is not subject to circumstance, save the nature of His Holiness and Truth,
and we are not forsaken, till we choose to forsake,
and we shall not be denied, till we deny Him and His love,
And so, we trust in Him. Jesus is His name.

It’s been two whole weeks and a day that John has been home. Everyday has felt like a vacation. We have been so very grateful for each day he has been home. During this time he has been in for one blood transfusion and one platelet transfusion. His counts were borderline last Thursday and he could have gone in for more blood if he wanted to, it was his choice. Being that it takes 6 hrs. for a transfusion of 2 units, he chose to stay home. He has felt weak and tired since last week. He felt well enough this weekend to go out to the movies. It was strange having him gone.

Tomorrow he gets admitted for Chemo for 5 days.

His counts have recovered enough that he doesn’t need the daily G-CSF shots. He is still getting his cyst packed daily. The surgeon said last week that he will continue to have the cyst until he is totally off chemo and is well enough to have it operated on.

I feel fairly rested and am ready to face the week. I think he will do well this week and get very tired next week.

Thanks for you prayers and love.

We have a long way to go yet. When John gets the transplant he will be in the transplant unit at hospital for weeks. The doctors have indicated they want one of us there as much as possible. People have been so great to us and there has been no way to thank everyone yet. Please read this post and see what a great community of people we have here.

Thanks to everyone that has helped us in the past few weeks. We have been in such great need in so many areas and you all have really stepped up and pitched in. Thank you so much!

Thanks to everyone for your prayers! We need them and they are effectual!

Special thanks to the Gibson Family for your generous support! You have done so much above and beyond. We can not thank you enough!!!!

Thanks to all the folks from Healthsouth who took up a collection of money to buy John some games and provide for incidentals. This has been our greatest need and helped us tremendously.

Jamey, Henry, Steve S, Stephanie, Paul, Jennifer, Shonda, Kay, Kale, Perry, Diana, Jay R, Jay D, Rick, Marcus, Chester, Jared, Derrick, Rusty, Melissa, Terry, Chandra, Karen, Ray, David, Judy, Kristina, Tracy, Don, Travis, Mark, Susan, Dan

Thanks to all the folks at Diane’s office. You have all been such a blessing to us! I know Diane misses you all. Thanks for the huge basket at the hospital and the finances and the meals and your emails and your hearts and your love.

Thanks for helping with our lawn!

Jonathan, Jamey, Eddie

Thanks for doing the groceries!

Jamey

Thanks for all the meals!

Rick and Shelly, Christy and family, Diane and Keith, Eric, Jamie W, Greg and Janet, Mrs. Short, Cindy G., Erin and Emily, Harry and Nancy, Dennis and family, Kevin, Linda, Jim B. and Cathy, Amanda’s family, Gibson Family, Mom and Dad!

Thanks to Diane’s mom and dad for driving so far and their help with finances, prayers, hospital vigils, and meals!

Thanks to my beautiful wife Diane for being the first gift God gave to me after the gift of Salvation and the first portion of our inheritance, The Holy Spirit! You have been amazing through out this! Keep the faith and know that I will always love you for you are my heart and crown!

Special thanks to CLC Raise The Praise Choir. Your ministry has gone beyond worship and praise to the Lord and into our wounded hearts! I miss ministering with all of you so much and pray we will get through the storm soon and the Lord will make the way for me to come back. Thank you, Thank you, Thank you!

Thanks for the awesome recliner for John to use when he gets to come home!

Mike and Michelle

Thanks for the cell phone and service! Wow, this has helped so much.

Harry and Nancy

Thanks for always visiting us and your prayers!

Harry and Nancy, Linda

Thanks to the congregation at Christian Life Church for all your love, support, being there when we needed, reaching out to our daughter, providing counseling, visiting and supporting us, and being a safe haven for us all. Thank you Pastor Danny and Gayla, and Kevin and Tim, and Josh and your families. We love you all so much and have grown in the love of Christ through your examples.

Thanks to the congregation and school at Oak Mountain Presbyterian Church. Your love, prayers, and support have made a huge impact on our family. You do not know how much we love you all!

Thanks so much to Hope Christian School and all the families that are praying and emailing and encouraging us. You are a huge part of our family. We are so proud of what we have accomplished together. Our oldest was apart of the school all the way through. She is now in her junior year at Oglethorpe University and has been on the Dean’s List for the past three semesters. Hopefully John will graduate in spring of 2005. We love you Wayne and Connie!

Thanks to Linda for the balloons and always brightening our hospital stays.

Special thanks to Jim for having a heart after God and fixing our transportation. Especially Diane’s A.C.

Thanks to Diane and Annette and Michelle and anyone else that provided rides for Deborah when we were unable. This has been especially hard on Deb.

Thanks to Penny for visiting and answering the phone when we call to cry on your shoulder. We love you.

Thanks to Sharon and Shearrod for not giving up on me and being there to listen and encourage and facilitate. I love and appreciate you so much.

Thanks to my Grandma Dakin for your constant support. It was not much but it was faithfully given and helped us with through many small annoyances.

Special thanks go to Diana Henze for all you did to save our company from crime, corruption, and ruin. We all owe you more than we could possibly express. We might not have health insurance or our jobs if it had not been for your character, honesty, integrity, courage and endurance. I am so thankful to you and your family.

Thanks to Jim H. for obeying God when he moved on your heart. You make it easy to receive God’s love and blessing.

Thanks to my Uncle Troy for calling and encouraging me. You knew what I needed to hear and loved me enough to speak it with authority. Thanks so much.

Thanks to Carl for being my friend. You are my brother and I am so proud to know you.

Thanks to our family members for all the encouraging words, prayers, and thoughts.

Thanks to my brother for getting on the bone marrow donor list even though the chances are slim he is a match. We love you!

Thanks to my only sister Lori. Your emails, comments, and encouragement have meant so much.

Thanks to my mom and dad. Without your support Jewelia would not be in college and we probably would have cracked under the pressures. I am sure I would have.

I have been working on this post for a while now. I keep saving as draft and coming back to it. I continually remember more and more of you that have made a difference to our family in our time of great need. I don’t think I will ever finish this post. So I am just going to publish it.

Above all thank you Jesus for coming to live, give, and die. Thank you for winning the right to all authority on the earth and descending into hell and taking all authority there. And ascending into heaven where every knee will bow to you in judgments. Both the judgment of believers and the dreaded judgment of those that have denied you. And thank you for giving all those willing to receive a pardon we do not deserve and could never obtain on our own and for adopting us into your family to be heirs with you of our heavenly Fathers love. For by Jesus stripes we are healed in our spirits, souls, and bodies.

I’m at Children’s Harbor typing this. John had an appointment today to have the cyst checked on and his blood counts taken. The doctor was pleased with how things are going. His counts looked alright except for his platelets. They are 7000, normal is 150,000-400,000. So, he has had some bleeding, nose bleeds and bruising. He is going to receive some platelets today. We’ve been waiting for them to come up for around 1 _ hours. Things move slowly in hospitals. The doctor said a lot of times it is slow getting the platelets because it is summertime and supplies run short. Sometimes they have to go down to the Red Cross and pick some up because the hospital is out of them.

I never realized how important it was to donate until John got cancer and needed so many transfusions. Donating platelets is time consuming, about 3 hrs., but you don’t feel different afterwards. You don’t have that faint feeling so many get when donating blood. So, this is my public service announcement today. Please donate. Donate blood, platelets, bone marrow, etc.

People’s lives depend on it. I know John’s has.

We are having one of those periods where we just
rejoice for the good period we are going through.
As
many of you know John got out of the hospital 8
days
ago, Sunday August 1, after a 17 days stay. He was
hospitalized for fever caused from a bacterial
infection from a cyst on his tailbone. It took
about a
week to get that under control then he had 5 days
of
the most intense Chemo to date, Ifosfomide and
VP16.
This made him very sick to his stomach, he was on
3
anti-nausea meds and still sick. On the day he
came
home the doctor told him he would be back in
within
the week with fever and need to be inpatient. John
and
I were determined to prove her wrong and she said
she
hoped we would! Well, we made it through the
week!
Thursday I took him to his family doctor here on
Hwy
280 and got his CBC taken with differential. His
total
RBC was 22 and WBC 500, this is normal after the
Chemo
he received. We had a scare Thursday night at
10:30
when his temperature went up to 100.4. (At 101 he
is
hospitalized.) I prayed and begged, packed, and
vacuumed and within a hour it was down to 98.5.
Whew!
Friday he spent all day at clinic getting a
transfusion of 2 units. He felt so much better.
Its
fascinating watching his color come back and his
cheeks
getting rosy as he gets the blood! He had a mild
reaction to this transfusion and got some welts.
Apparently, the more transfusions you have the
more
common reactions are. He has had more transfusions
these past 2 months than he had the 2 years of
treatment prior to his relapse. This Chemo he’s
getting now
that
he has relapsed is wicked.

Anyhow, aside from a lot of muscular pain, he is
doing
pretty well. I’m still playing nurse at night and
giving him his G-CSF (Growth Colony Stimulating
Factor
to stimulate white blood cell production) shot and
packing his cyst. His spirits are good. He is a
trooper. He had to miss 2 birthday parties this
weekend due to low counts.

He takes his temperature frequently knowing that
it
can shoot up to over 100 from normal in just a few
minutes.
As we move closer to transplant we get more
excited
and apprehensive at the same time.

Please pray for Zach. He is a 13 year old boy we
know
from the hospital. He has cancer and the long term
high doses of steroids he has been on has caused
his
bones to become very brittle. He is currently in a
wheelchair because the ball part of his hip bone
fractured. When he is in his 20’s he can have it
replaced. He is on Loratab and Oxycotin.

Please pray he can stay home this week too. His
next
planned hospitalization is next week.

What a day. What a week! Everyday since John’s been home has been busy, busy. Taking Deborah for her driver’s test (she passed!), to the eye doctor, dentist, shopping, church, ears pierced, etc. Then of course, there’s taking care of John and his multitude of health needs. His shots, wound care, pills, food, etc. He had an appointment Tuesday to check his cyst and blood counts. Everything looked fine. His counts were actually higher than expected. Then today he went to have his blood checked again and his counts are close to bottoming out. I can only imagine how low the white counts would be without the G-CSF growth stimulating shots. This afternoon the WBC was 500, normal is around 4500-10,500. He is very susceptible to infection now. Tomorrow he goes in for a red blood transfusion. That’ll take about 6 hrs. total. They keep saying he is going to be having a fever and need to be admitted. They were like “Go ahead and bring him in tomorrow and plan to stay 6 hrs for his transfusion and if he doesn’t have fever he can go home, but there’s a good chance he’ll have fever tomorrow”.

I looked through some of my old mail today. I wish I would have looked at it sooner because I missed a support group meeting for caregivers of acutely and chronically ill family members. I think Richard and I could have benefited from it. It’s so hard for me taking care of John’s needs and at the same time not being able to meet other’s needs because of emotional and physical limitations. I feel so pulled and like I never do an excellent job because I’m always letting someone down. Where ever I am, whatever I’m doing, it’s always in the back of my mind “Does John need me? Does he have fever? Are the nurses making mistakes? Are we making the right decisions? Etc. Etc.”

I feel bad for not being there for Deborah, but she has never complained, never said anything. But I know she’s hurting. I’ve had people tell me I need to leave the hospital and go be with her. But when I’ve held John’s head all night while he vomits and clean up after him and hear him groan in agony, I just want to stay with him and take care of him. It’s hard to leave the hospital. Sometimes, when he doesn’t want anyone there, I’ll go and do something special with her. I spend a lot of time with her when he’s not inpatient, like I did this week.

I have no energy to minister to people outside my family. People tell me their family’s health tragedies and I have no answers. I just feel a profound sense of empathy. I just want to comfort them in some way, but I don’t have the capacity. I feel so raw. So exposed. The pain that God’s hurting people go through effects me like never before.

I don’t understand the reasons John has to go through this. He tells me that it is to make him a stronger person. He says this period of his life, from diagnosis to cure, is so small compared to his whole life he will live. He tells me that going through this will equip him to be better enabled to help others more some day. He feels a life that is not spent bettering humanity is a life wasted.

I don’t want John to learn these lessons this way! Why can’t he learn them from some other source? A book. A teacher. The Bible. I don’t understand this. I know it’s not for me to understand now. Some day we’ll all be able to look back on this and see the Master’s Footprints carrying us. But for now, I miss John being whole. I just see him over and over again in my mind’s eye healthy. I see him playing soccer, playing ball with Bo, running over the hardened volcanic lava at Craters of the Moon National Park in Nevada, hitting a homerun in Dixie Youth, playing tennis, driving the car. I sit and watch him sleeping and see his bald head, his unhealthy pallor, the dark circles under his eyes and I just want to wake him up and have it all be over, tell him we were just dreaming. It’s been over two years now and I’m still paralyzed with the news of the diagnosis. A part of me just stopped living that day. I don’t know that it will ever breath again.

IT IS WELL WITH MY SOUL
Horatio Spafford
Verse 1
When peace, like a river attendeth my way,
When sorrows like sea billows roll.
What ever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Chorus:
It is well (It is well) With my soul (with my soul),
It is well, it is well with my soul.
Verse 2
Tho Satan should buffet, tho trials should come,
Let this blest assurance control,
That Christ hath regarded my helpless estate,
And hath shed His own blood for my soul!

Sorry have not posted in a while. Had a very bad week last week. Work was very busy and a bit stressful. Seeing the stresses in all my coworkers. It is kind of a strange environment still. It is probably better that I did not post anything. Seems I kept getting people I love angry with me last week.

Angry is how I have been a lot lately. Think that is part of the test. “Be angry and sin not.” Don’t think I am being very successful at it. I am really hurting from the strain right now.

I got very upset because people did not like the post with John’s comments about a nurse. I removed it and the issue caused a huge rift in my marriage. I got really angry and hurt by the whole deal. No one saw it my way. Everyone is so confoundedly political and American politics has become so twisted. Eventually no one will be allowed to express them self honestly. Especially not about actual events they experienced that involve any corporation or individual working for a corporation.

Corporations should not be given the same rights as individual citizens.

Corporations should not get preferential treatment over individual rights.

American corporations are not God! God is Love!

Deborah got home from the youth mission trip to El Salvador. It was a very positive experience for them. I am so proud of her!

John was not well enough to come home Saturday. We got him on Sunday. He was doing much better than Friday or Saturday. There is so much involved in going to and coming home from CHSYS. It is quite demanding on us all. We really need more help but we do not seem to know how to ask. Diane went to the hospital and I handled stuff with Deborah and the home. We got the prescription filled for the shots he gets the next few weeks at home. $7000 or $350 per shot for next 20 doses. Diane gave him the shot last night. Emotionally she did not handle it very well. The shot goes in the leg.

I was primary on call for work last week but only got one call over the weekend on Sunday night. It really worked out well and I am thankful. I am beginning to feel like an empty shell of a man again. My wife and I are too burdened and busy for each other, my son is suffering like hell, my company has been devastated by crime, my oldest child is away till November at university, all of my savings have been used up, and my youngest is beginning government school in ten days. In my opinion, my ability to interact appropriately with people has become questionable. Don’t know how to relate to anyone that is not in the midst of the fiery furnace. Definitely feel like I have had my Christian mission ripped away from me. Maybe this suffering will improve my relations with the Lord.

People have told me I should not post what I am feeling and experiencing unless the posts are positive and uplifting. They will probably take issue with this post. To me denial and evasion is cowardly. We must be determined, courageous, and honest. Especially in our fight to be successful in the defeat of this cancer and any other corruption. True enough emotion can not be trusted and constantly changes. But it is essential to our existence and the human experience. And I believe it is a vital component in our fight. Strength is not in my character or me. It is and should be in Jesus and Jesus in me. As more and more of me gets burned out, confusion tends to fill the void, but let Jesus’ love, peace, grace, power, and strength fill me instead.

You can probably see that I am very soul sick and fractured right now. I am very thankful to everyone for all their help and prayers. I have been working on a post to acknowledge people in thanks. I have it saved as draft but have to continually add to it since we have such and awesome community. I am so thankful to the Lord for how well John is doing thus far. I know it could be much, much, much, much worse. Thank you Jesus!

1 Therefore seeing we have this ministry, as we have received mercy, we faint not;
2 But have renounced the hidden things of dishonesty, not walking in craftiness, nor handling the word of God deceitfully; but by manifestation of the truth commending ourselves to every man’s conscience in the sight of God.
3 But if our gospel be hid, it is hid to them that are lost:
4 In whom the god of this world hath blinded the minds of them which believe not, lest the light of the glorious gospel of Christ, who is the image of God, should shine unto them.
5 For we preach not ourselves, but Christ Jesus the Lord; and ourselves your servants for Jesus’ sake.
6 For God, who commanded the light to shine out of darkness, hath shined in our hearts, to give the light of the knowledge of the glory of God in the face of Jesus Christ.
7 But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us.
8 We are troubled on every side, yet not distressed; we are perplexed, but not in despair;
9 Persecuted, but not forsaken; cast down, but not destroyed;
10 Always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body.
11 For we which live are always delivered unto death for Jesus’ sake, that the life also of Jesus might be made manifest in our mortal flesh.
12 So then death worketh in us, but life in you.
13 We having the same spirit of faith, according as it is written, I believed, and therefore have I spoken; we also believe, and therefore speak;
14 Knowing that he which raised up the Lord Jesus shall raise up us also by Jesus, and shall present us with you.
15 For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God.
16 For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day.
17 For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;
18 While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.

Yey! John came home today! He is feeling so much better. He wanted to stop at Taco Bell on the way home from the hospital! He has a couple friends over now. Such a dramatic change from yesterday.

John wasn’t able to come home today. All he does is sleep, sleep, sleep. Last night he threw up a lot. He was on 3 different meds for nausea. It breaks my heart to see him so inert. The doctors are not concerned. They said this is normal. Always before the Zofran has helped. He is still getting fluids to keep him hydrated. He hasn’t thrown up since 3:00 am. I’m going to spend the night again. Richard is there now. I came home and slept this afternoon.

I HATE cancer!!!!

Each day John gets more fatigued. It is 4:15pm now and I have only seen him get up to go to the bathroom, sleep, eat crackers and get sick. This Chemo is making him nauseated. Fortunately, we have good medicines for that. I think I will spend the night here unless he objects. He will not need a transfusion before he leaves. His counts are still high. The plans are for him to leave in the morning if he is still able to drink. I don’t think that will be a problem.

Tomorrow evening I will start his shots. I will also need to pack the cyst twice a day. It is healing. His neutrophil counts are 1800, the concern is how well will it heal when the counts dip down to around 100 next week? These are the infection fighting cells.

Deborah came back from her mission’s trip to San Salvador on Wednesday. She had a wonderful time and worked hard. She is very happy she had the opportunity to go.

Everything seems to be going well. He has had some nausea, but he hasn’t gotten sick. He gets Zofran for nausea twice a day as a precaution. He is not getting the I.V. antibiotics now, just oral Cipro. John gets 2 Chemo’s daily in the afternoon. He is pre-medicated for one of them with Benedryl and that makes him sleepier than he already is. He is so tired and quiet. He got up this morning and exercised with Physical Therapy and then went and took a shower. He didn’t seem overly tired from it all so he has regained a lot of his strength. He gets another medicine 8 times a day by i.v. that prevents his kidneys from damage from the Chemo.

They stopped taking daily blood samples. The doctor said that the plan of action would stay the same whatever the results and it was an unnecessary expense. She said they would draw his labs on Friday and determine if he needed some red blood to “pump him up” to be dismissed. She said he would probably be back with an infection before the end of next week. I told her we were going to prove her wrong and she said “I hope you do, I hope you do”.

Tomorrow I learn the procedure to give him his G-CSF shots. This is a growth medicine to stimulate cell production in the marrow. His counts are supposed to bottom out and this med will help to counteract that. I had to help give him shots before and I am comfortable with it, well, as much as I can be.

I am at Children’s Harbor now updating this. I’m so glad to access to a computer when he is feeling well enough for me to leave.

I discovered a downside to keeping this web log posted. We used to get a lot more phone calls and emails and they have dwindled. PLEASE keep in touch! You all just don’t know how much it means to hear from you. It lifts me up.

John has been getting a chemo drug we did not get in the first round. Think it is called ifosphomide or somewhere there about. They give him an additional medicine 8 times per day to protect his organs from damage the chemo can cause. He has been moved to oral antibiotic as well. This is an attempt to make it easier for him to go home at end of the week.

Diane is meeting with our Nurse Practitioner to learn how to give an injection of chemo John will need daily next week. Doctors think he might be allowed to go home at end of the week. Dr. Hilliard also indicated that it would probably be a short respite since his counts would drop significantly next week and he would probably get a fever from infection and have to come back in.

John has been very quiet and sleepy this week. He has been almost what I would call sullen. Not interacting very much with us and very nonresponsive in general. Hard for us to know if it is the normal teenage male independence pattern, a depression funk, a neurological reactive pattern, or some combination.

Had first experience of my child being in government school yesterday. It was quite odd for me. Not sure what it was called, but the Junior class had to go get the schedule, locker and parking assignment, and pay a bunch of fees. All in the same place at the same time We did not pay all the suggested fees and paid over $300. Would prefer to do this than have higher property taxes. Normally would not think it much of a hardship but the cancer treatment has taken it’s toll. Thank God for my job. It was enjoyable seeing and being around so many people but the process was bizarre in it’s design and execution. Seemed to take way too much time but everyone I met was pleasant and helpful. There also seemed to be a great lack of attention to individualism or individual needs. Kind of a paint by bucket dump approach to the process. Like if some facsimile of the objective is achieved then the results are satisfactory, but the nature of the process implementation does not appear to be designed to facilitate obtaining focused reproduction. Our daughter Deborah is still out of country with the youth mission trip and missed all the fun and excitement. She gets home sometime today and I can’t wait to see her again. She called night before last and sounded so good. They had a day at the beach yesterday. Hope they passed a good time! She starts school on the 12th. That seemed odd for me as well. Why start school in the middle of summer? Autumn begins on the average on September 23rd. Hmmm…Perhaps government school is not for everyone.

John got to leave the hospital this weekend on a pass. He came home and downloaded Michael J. Badnarik’s class “Introduction to the Constitution” and burned it to CD. It would have been a slow process using dialup at the hospital. He stopped at bookstore to purchase a copy of “The US Constitution” to use with the class. He also used the time to sleep in his own bed without the threat of the stupid IV pump beeping.

They stopped giving him IV fluids constantly on Sunday morning. This made his life more pleasant. They would hook him up, give the IV antibiotics, and then Hep block him for eight hours. What a nice reprieve. He did have an issue with one of the nurses. He requested that they replace her and they did. I have seen that nurse do things that seemed abnormal before but she seemed nice. She put a couple of things in the trash that the other nurses put in the medical waste receptical and she always seemed to forget things and drop things. Guess John is smart for asking to have a different nurse.

Things were kind of sad up on the floor at times this weekend because they lost a child in room 792. Don’t know which nurse the child had. hmmm?

Our downstairs AC died Friday Night. Yikes!!!! It got quite hot down there Saturday. The upstairs AC ran non stop all weekend and could not seem to keep up with the load. We kept all upstairs doors closed but interior doors probably do not seal well.

Don’t forget to check Mom’s Posts category.

Live Strong!

It’s been an interesting weekend. The doctor said that John could actually be released last Friday (2 days ago) and we could give him his I.V. antibiotics at home and be readmitted tomorrow for his next round of Chemo. But it made more sense to just keep him inpatient rather than re-admit him, do the I.V.’s and pay the extra co-pays. He had the option to come home on pass between his 3x’s daily I.V.’s. He came home Friday and Saturday around 5:00pm and we had him back by midnight. It worked out well because the air conditioning went out on Saturday and it was so hot here today that he just wanted to stay at the hospital!

Tomorrow he starts 2 Chemos he has never had before, Ifosfamide and Etoposide. These are each given once a day thru his central line. We don’t know how he will feel on these. We pray he gets through it without much difficulty. The plan is for him to be able to go home next Saturday, then he will have the next 2 weeks off and go back the 3rd week after he is released. The doctors all say he will not be able to stay out of the hospital for that long. They believe that after this week’s Chemo his counts will reach rock bottom and he will be in within 1 week with a fever and infection. I would like to prove them wrong!

He continues to get the cyst packed twice a day and it is less red than it has been. Tomorrow they are changing his antibiotic to treat the cyst because he has been experiencing nausea.

After last week’s news of John being in remission and finding good potential donors, we are encouraged!

Be sure to check out the new Mom’s Post category. Diane has begun writting to the log and welcomes your comments. This will be therapeutic for her and provide more perspective for everyone.

We will continue to post John’s writing in the General Category. As things progress we might make an additional category sort based on month.

Please note: all categories can be viewed at same time by using this link. Which is http://rdakin.org/wordpress/index.php

I have great news to enter in my first entry in this web log! Yesterday the head of the bone marrow unit, Dr. Sandi, came to meet with us. She said the preliminary results were in from the bone marrow search and there were over 150 possible matches! This number is very unusual! These results were sent here to the University of Alabama and narrowed down to 15-20 matches. Then it was narrowed down to 3 men and 3 women. Men typically make better donor matches, so they are looking at the 3 men and running more tests. There are 10 cell surface markers, antigens, which they try to match. Ten out of ten is a perfect match and they try to get as close as possible to ten. These matches were 10/10! Now they are running tests to look at DNA and will be contacting these 3 individuals to see if they are still available etc. We are very encouraged. Dr. Sandi was very happy.

She stressed the long and arduous journey will still have ahead of us and the possible complications which are numerous. I had many questions about this facility verses another, etc. Dr. Sandi credentials are impressive as well are her staff’s.

John has felt well enough for the last couple of days that he doesn’t want us there at night. He wanted some alone time yesterday so I respected that wish and didn’t get up there until the afternoon. He is feeling so much better. He’s walking around now and is getting antsy being there. His blood counts are better than they have been in months. Next Monday the plan is to start some very intensive Chemo. They are waiting till Monday to give the cyst on his tailbone time to heal. He is getting sitz baths and benadine washes.

Please pray that John does well on this next round of Chemo and the side effects are minimal. Pray that the cyst heals quickly and will not be the cause of more infection.

While I was at work yesterday afternoon, the lead doctor from the transplant unit came down and visited Diane and John. She told them the preliminary search for a bone marrow stem cell donor returned about one hundred fifty possible candidates. They were very pleased by this and said it was unusual. UAB took the list and narrowed it down to the top twenty candidates. This was broken down to a list of six candidates made up of three men and three women. They prefer to use the men as donor but I am unsure why. They test for certain antigens or proteins on the cell wall of the bone marrow stem cells in the blood. Using this test, the six candidates matched ten out of ten key indicators used to determine eligibility. Now they must further test at the DNA or gene level. From my limited understanding, they look at some Human Leukocyte Antigen for an acceptable genetic match. Apparently from reading about the genetic screening, an important goal of any serum screening procedure is to gain insight about the spectrum of HLA-specific antibodies. This is based on the concept that each HLA molecule has multiple antigenic determinants (epitopes) that can be grouped as private (e.g. HLA-A1, HLA-B7, etc.) and public determinants (sometimes referred to as crossreactive groups, CREGs). A public determinant is an epitope shared by molecules with different private specificities (e.g. A1+A3+A11, A2+A9+A28, B5+15+35, B7+22+27+40, etc.). Most highly sensitized patients show a persistence of the same pattern of antibody specificity against one or a few public epitopes. A better understanding of the antibody specificity improves the selection of transplant donors with acceptable HLA mismatches. The epitope being the surface portion of an antigen capable of eliciting an immune response and of combining with the antibody produced to counter that response. The antigen being any of various substances, including toxins, bacteria, and the cells of transplanted organs, that when introduced into the body stimulate the production of antibodies. Also called allergen, immunogen.

All of this screening for a donor is to reduce the graft versus host complications. These complications are extremely serious and can be just as life threatening as the leukemia. While the team was very pleased and optimistic with the progression, there are several determinates still before they can say we have a match and a willing donor. It is strange to be so happy/relieved about something and yet at the same time to be apprehensive about it. Our family needs to make many important decisions regarding transplant still and we feel so ill prepared.

Please continue to pray for our family. Pray for Divine guidance and intervention! Remember we are believing our Heavenly Father for no cancer cells in John’s body, no secondary infections from virus, or fungus, or bacteria, no tissue damage from therapy, a perfect bone marrow donor match if needed, no negative side effects from chemo, a complete recovery. All our confidence and trust is in Jesus!

*Note: The previous post was a draft that I did not get to post till the next day.

The bone marrowcontinues to be clear of cancer cells and one of the doctors called it remission yesterday. Another doctor said he needed to produce more red blood cells before it could be called remission. No matter what they say this is good news. His counts continue to rise and they will start chemo as soon as they get the infection totally controlled.

After further examination they are calling the sore on his back a cyst or abscess and not a fistula. The surgeon said any teen ager could get one and it is a sore that grew about a centimeter deep. They are attacking it with cleansing and antibiotics. They say we should start chemo again on Monday. Because of the infection John has to stay inpatient till we get done with chemo.

Diane toured the transplant unit with her mom and met a woman whose son just had a bone marrow transplant and he is doing well. They went to Boston to get their transplant. Apparently they have more financial resource than we do. They had to fly him on private jet up there and back. They opted for Boston because of some doctor up there. Diane would have to post the rest of the story. Maybe she will start posting in a new category. Our lives are so disrupted though!

PT continues to work with John. Getting him up and walking. He has lost so much cardio respiratory strength.

He is still getting IV antibiotics to fight the infection. Still no feverand still no cancer.

They call the cut on John’s back a fistule. They think it is about 1cm deep . Dr Hilliard is on rounds now and she told us last night the surgeons will examine the fistule when John is sedated for BMA on Wednesday morning. They want to make a better determination on what it is and how deep it goes.

John looked like he felt much better last night. Still having headaches and some pain. His counts continue to climb. Still not enough to specify remission. Maybe next week. Jesus let there be no more cancer cells in John’s body.

PT got John up and walking around yesterday. I have