We have finally reached the magical 100 day milestone. Today is day 101. Josh completed a two and a half hour MRI on Thursday and had a good checkup. His blood counts are on the rise again with the only negative being his potassium level is low. This was to be expected because of the amount of steroids he is consuming. So starting Thursday night, Josh bought himself another medication, potassium supplements. The duration of this intake we do not know at this time but will find out Monday. Monday is a very important day as Josh must undergo hopefully his last bone marrow aspiration. Preliminary results will be known Monday before we leave the hospital with DNA testing completed within the next two weeks. Our hope is that we find no leukemia blasts in the bone marrow, and if this is the case, theoretically Josh will never have to have another bone marrow aspiration. Monday also we will have a neurological checkup. We think we have lots of good news to report about the paralysis but we will wait until Tuesday's update so we are not spreading rumors. Josh's physical therapy went very well this week with the therapist explaining the Josh has made tremendous in only the two weeks that she has seen him. He works very hard which explains why he has been very tired the last seven to ten days. We will have more information for everybody Tuesday evening after our very important visitation on Monday.
On the lighter side of life, for the first time Josh is looking forward to a bone marrow aspiration. So you ask why would a seven year old look forward to a painful procedure? The answer is simple to him and us. If all looks well, he will be scheduled for a surgical procedure to remove his central line. Josh has been waiting for this since he received the line on December 1, 1995. Dad has surrendered this week to the King of Rummy with the loss approaching 500 points. Josh is back playing computer games and spending lots of time with Jason.
This has been an exciting week with Josh starting in house physical therapy. They have many objectives for Josh, but the main one is for Josh to start doing more for himself. Josh is now able to get himself dressed (except for getting his shoes on and he is working on this), move in and out of his room with his wheel chair and has learned some balancing techniques. He is happy with the therapist so far. We all enjoyed the week break from Indianapolis this week, but we will be traveling to Indianapolis on Thursday for a check-up and an MRI. We will have the results from the MRI early the following week at our check-up and neurological exam. Josh seems to have lost some of his energy late this week and we are not sure why. We hope that it is either that he is tiring from all the extra work that he is doing or it may be because his blood counts have fallen. We will find out later this week. Josh also may only be about one month from needing a hair cut. It is amazing that his hair responded through all of this the way that it has.
Jason's baseball team presented Josh an honorable hat this week. All the team members came down the right field line to where we sit with him and the coach handed him the hat. All the kids cheered as Josh removed his Superman hat and put on the Concord Little League hat. Jason's team has only lost one game since Josh started coming to the games. Josh also has read his first book by himself this week called "Are You My Mother", by Dr. Suess. Josh leads dad by 165 points this week in the Rummy game and is enjoying every minute of it.
Thanks to the effort of the staff at Riley Children's' Hospital physical therapy has been approved by our insurance carrier for therapy in our house. This makes everyone involved extremely happy that we do not have to drive Josh somewhere for this needed therapy. It will be provided one to two times a week depending on the recommendations of the therapist. Considering that Josh is still immune depressed and we are driving him to Indianapolis weekly Josh is happy to stay at home for this service. Another topic that has made Josh happy is that the staff at Riley's has given him next week off! This will be the first time since who knows when that we are not driving 350 miles for a clinic visit.
Josh's blood counts are dropping somewhat because one of the medications (Septra) an antifungal and antibiotic causes depressed blood production. This was expected and the staff will keep a close eye on the situation. His counts are still good, but are just on the decline. As far as his paralysis is concerned he is still making steady progress. He now has deep sensation throughout both legs and feet. He seems to be moving his right foot a bit more involuntarily and has regained some reflex in his right knee. His left foot has moved just a few times involuntarily, but seems to be heading in the same direction as his right foot. For the first time Thursday morning Josh could feel the catheter being inserted into his penis for bladder drainage. It did not hurt him though it was just a sensation felt. Also he was seen in the Urology clinic Tuesday at Riley's and the doctor there thought that catheterizing him every eight hours was the way to go. So now we are only taking draining his bladder three times daily as opposed to four times last week. The reason for this reduction is because Josh is voiding unknowingly himself. This is all progress in the right direction for him. Josh will be seen at Riley's on Thursday, June 20 for a check-up and another MRI. The neurology team will see him the following week to let us know the results of the MRI and what they think of his progress. Lets keep our fingers crossed.
On the lighter side of life Josh and dad have started a card game of Rummy. As of today Josh is ahead of dad by 35 points. We will see how long this goes on. Another game that Josh has taken interest in is chess. He is doing fair considering he is only seven. Jason's baseball team continues to win with Josh keeping score from a distance. He is a big hit at the baseball diamonds as many people come by to say hello and wish him well. As for Chaz he just runs around with the other children playing their own games and coming up to mom and dad for money to buy candy or pop (some things never change). Josh has made a new friend via the internet. This family is from Sweden and we have been writing back and forth now for about two weeks. We are learning about another culture and they there are learning from us. They also have experienced childhood cancer and are at the end of his chemotherapy. Hopefully their battle is over as life moves forward for them and we hope to be there one day in the future.
Our new journal entitled "A Parents' Perspective" is now up on the internet and we hope that one day it may help someone out in some small way.
Day 79 for Josh's new beginning in life and we are rapidly approaching the first big milestone, day 100. Josh had a great check-up Tuesday at Riley's and everyone's moods have shifted from wondering where he may end up to looking happily toward the future with anticipation and hope. Josh has made tremendous strides in the past week with the paralysis descending to his groin area. He also is involuntarily moving his right foot and knee more and more every day. Just yesterday he was stroking the under side of his right knee with his hand and his leg jumped several times. As Josh would say "that's cool"! Also he is regaining some involuntary reflexes in his left foot and leg as well as some sensory feelings throughout both legs and feet. It was explained to dad on Tuesday that Josh shall regain control of his bladder and bowels last as these functions are controlled by the lower part of his spine (sacral 3 vertebra).
We are working diligently toward getting home physical therapy once or twice a week, but this might not be possible ( you know, insurance says no we say yes). Regardless Josh will be seen by a professional therapist if dad has to drive him half way across the state twice a week. Whatever we can do to give Josh the best chance of walking again we must do with absolutely no exceptions!
As far as leukemia related issues, it is the same old song and dance. Josh is doing GREAT!!! He is definitely blood product free and should stay this way from here on out. His blood counts from Tuesday are as follows....white cells of 9,800; AGC or ANC of 8,040; red blood count 4,030; hemoglobin of 13.5; hematocrit of 38.8; platelet count of 107,000. These are respectable numbers for a transplant patient at this point in time considering he received five plasma pherisis treatments a few weeks ago. Hopefully Josh will continue by the book here on out. Josh's hair is growing back the same color (black) as before the transplant. Surprisingly he has a full head of hair growing in.
On the lighter side of life Josh had one of his kindergarten teachers, Mrs. Shaffer stay with him for a few hours while dad went with Chaz to his pre-school graduation on Thursday night. Josh did not want dad to return, but instead wanted Mrs. Shaffer to stay here. As most of you know Josh is on a high dose of steroids to help with the paralysis and GVHD so he is eating like a grown man. He is craving chicken nuggets right now and this week he has eaten well over 125 of them. Regardless this is cheaper than the $900 steak-in-the-bag. The deck and ramp are almost completed and Josh is looking forward to checking it out. Our friend from Irving, Texas, Mark Yeakley (Jennifer's father), is a policeman and has threatened to come up and give Josh a ticket for driving his chair to fast, that is a Dallas Cowboys game ticket. We will have our Parents Perspective page up by next weekend and we believe it will be worth the time to read for any of you who may be going through a bone marrow transplant in the future.
Day 72 and things are starting to get back to normal. Josh traveled to Indy twice this week and shall be returning once next week. He also will be seen locally two times a week for physical therapy, times yet to be determined. This is because the doctors want to make sure that Josh stays in top condition so that if the paralysis completely recedes he is ready to go. We still will be doing physical therapy at home twice a day. The director of neurology read the MRI Tuesday morning that was taken last week. He noted that there was significant changes for the better whereas the radiologist determined there was no changes from the last MRI. This should be considered good news. More good news is that Josh is having some resistance in his legs while conducting hamstring stretches. Josh has no idea that he is giving resistance, but we can feel that he is giving some resistance. Also during the physical examination Friday it has been noted that Josh has involuntary reflex in his right knee. The paralysis is now located around the groin area down. It is hard to determine where the paralysis is inside his abdomen because he still has no control over his kidneys and bowels.
We are pretty sure at this point that we will be doing no more lumbar punctures with Ara-C (chemo-therapy). It has been stated to us that Josh would only have a 25% chance of contracting central nervous system leukemia. We're used to facing short odds so this is something new. For a change Josh has something in his favor. As far as transplant related issues, Josh is still doing well at this time. With the addition of a new ramp at home this weekend he may start getting out a little more which will be very good for him.
On the lighter side, Jason's baseball team lost their first four games. Josh has attended the last three games and they have won them all. He enjoys sitting in the van keeping score for each inning and after the last game several of the parents came by to tell Josh that he is their lucky penny. Josh also went to his school and while sitting in the van waved to his classmates. This made everyone involved very happy. Again we would like to say that Josh's moods are so much better since he is home.
Thursday Josh visited the Stem Cell Unit outpatient clinic for a neurological examination. First of all, the big news on Monday that he has reflex in his right foot is not big news at all. The director of neurology explained that this is a natural process and is not related to the long term prognosis. But on the upside, as the neurologist tapped his right and left knees Josh was able to identify the touch. This is good news because two weeks ago he could not do this. Josh had an MRI at 3:30 p.m. and we received the results at 9:00 p.m. Thursday night.
The results from the MRI showed no change from the previous MRI. The neurologist and the Stem Cell staff indicated to us that this is neither good nor bad. We must admit that during the neurological exam there appeared to be disappointment on the faces of all staff in the room. Regardless that the MRI showed no signs of improvement, the picture of their faces indicates to us that Josh has not made as much progress as they had hoped for. Josh is scheduled for another MRI in two to three weeks.
The cause of the paralysis is still an issue because of the immediate course of treatment prescribed for Josh. Because Josh was in a high risk category at diagnosis for central nervous system involvement (leukemia involvement) his protocol calls for six monthly treatments of intrathecal Ara-C, a chemo drug injected into his spinal fluid. His first spinal tap and treatment was performed one day before the onset of the paralysis. There is a question of what role this played in the paralysis and what could happen if more treatments are administered. The dilemma is whether or not to continue the treatments into the central nervous system. As one of the Stem Cell doctors said, "This is a lose lose situation". The consequences of not administering these treatments is that the leukemia could take over his central nervous system and this would most likely be fatal. The leukemia may or may not be laying dormant in the central nervous system at the present time because the bone marrow transplant is not the optimal treatment for central nervous system involvement. Because the central nervous system is a sealed system away from the rest of the body the bone marrow transplant is not a good deterrent for the leukemia here. On the other hand, if we choose to continue the Ara-C treatments the result could be worsening of the paralysis and this too could be fatal.
The doctors will spend the next week contacting bone marrow transplant units across the country gathering information. Once all information is assembled we will meet with the doctors and discuss our options further. Ultimately we will have to make the decision of whether or not to continue the intrathecal Ara-C treatments. Our decisions will be based on the fact that we believe quality of life outweighs quantity of life. Ultimately whatever decision we make and whatever the outcome may be we must never look back and second guess the decision we make. May God help to guide and strengthen us over the next few weeks as we make our decision on Josh's behalf.
On an upbeat, Josh had two of his teachers from Concord Eastside where he attended kindergarten this past year visit him at home this week. This was the turning point for Josh's mental attitude. He was very happy to see them and remained happy throughout the whole week. Josh also conducted a newspaper interview for the Sunday local paper. He didn't mind answering a few questions but soon got bored with it and wanted to get back to his computer games. Today Josh would like to go watch Jason play baseball. We are taking him to the ballpark to watch the game and he may be able to get out of the van for a short period of time. He is very excited about this. In the future we will only be updating this home page on a weekly basis or when prudent information becomes available.
Josh has made it to day sixty and still going. Josh visited the Stem Cell Outpatient Clinic today with lots of good news, (we could use some). First of all and the most important is that Chaz's bone marrow is growing like a wild fire inside Josh. Josh's blood counts are looking very good with over 18,000 white cells, ACG over 4,500 and platelets over 150,000. The team of doctors are thrilled with this progress considering the past set backs. His bladder infection is gone and he is once again antibiotic free. On the down side he continues to have tissue break down on his rear. Dad was taught some new techniques today to help with this situation. At this point it is not real bad yet, but if we don't take care of it now we may have troubles later.
Now for the really BIG NEWS!!! Today Josh had some reflex motions in his right foot. His toes moved in the upward motion upon a stiff touch down the middle of his foot. What this tells us is that his spine can feel the touch even if he can not. This is definitely worth getting excited about. The paralysis has moved below his navel cord at this time also. Thursday he will have another MRI and we should have the results by 12:00 p.m. on Friday. Dad gave the doctors an MRI that was taken of Josh at the age of three and they were happy to have a base line to look at.
We will finish with a couple of thoughts. First if we have been just a little bit gloomy, (yea we know we were feeling sorry for ourselves) with these updates we are sorry. We have the family back together and are trying to pull ourselves together emotionally. We will be back to normal in a few more days, (Josh has told us to pull it together). Look, listen and learn from Josh again.
Josh made it back home yesterday for the second time in less than three weeks and he was as excited this time as last time to be back into a family environment. His spirits are much better than mom's and dad's so we should stop, look and learn from him again. What we have found is that our house is not very friendly to his wheelchair. There are no sinks and tubs accessible for him so we bring them to him in the form of plastic containers. We have also found that our dining room table, computer desk, and his bedroom are difficult for him to get into. Oh well, we learn to adapt to our new environment just as we have adapted to everything else. Life does go on.
Josh requires care around the clock now that we are home. We must catheterize him every six hours, hand bathe him daily, medications twice a day, physical therapy twice a day, dressing changes three times a week, trips to Riley's Hospital twice a week, and generally move him around from room to room (we hope that our backs hold out). We are not feeling sorry for ourselves just trying to let you know how demanding life has become for us now.
Josh is scheduled for another MRI next Thursday at 3:30 p.m. to determine how much permanent damage there might be and to estimate what we may expect long term for Josh. Josh will also be seen in clinic on Monday for a routine check-up (if there is such a thing as routine now). His bladder infection is much better which is great news. Also on the up beat Josh's hair is starting to return slowly and we think it will come back in very black and course.
This whole page has been based on the theme from "The Wizard of Oz" and tonight we are all sitting down in front of the TV watching Dorothy travel down the yellow brick road. I don't think she will have quite the adventure Josh had traveling down his yellow brick road, but then again we wouldn't want anyone to have this adventure.
Monday, May 7, 1996:
Josh found a new game to play on the Riley Channel. It is called IV Tower and is similar to Hangman. He is looking forward to playing Bingo again tomorrow night. His spirits are very good right now which is a big change from last week. The huge doses of steroids he was receiving had intensified his irritability and now that they have been decreased his attitude is much better. We can't believe how well he seems to be adjusting. He is taking it much better than mom and dad although we are beginning to adjust also. He was able to get out of his room in his new wheelchair quite a bit today and that makes him happy. He and his brothers miss each other and they are ready to see each other this weekend, hopefully at home. If not, Jason and Chaz will visit him in the hospital on Saturday, after Jason's baseball game.
Monday, May 6, 1996:
Still no change with the paralysis. Josh received his fifth plasmapheresis this morning. This will be his last one as long as there is no progression of the paralysis, in which case he could potentially have this done for a few more weeks. The surgical team removed the pheresis line they had put in last Tuesday because of the risk of infection. Josh's doctor told us that infection is still the most life-threatening risk right now, and that risk has increased because of the catheter for his bladder. This will be removed tomorrow and we will go to a different kind that is inserted only when his bladder needs to be emptied. He will continue to be treated with the anti-biotic for a couple of weeks for the bladder infection he has now. Follow up urine cultures were done yesterday and today to check on the progress of the infection. No results have come back yet. Also, the throat culture was negative and the sore throat is gone.
The good news still is that there are no signs of leukemia and, until proven otherwise, we (including the doctor) consider Josh cured of the leukemia. His white cell count is elevated but it is because of his bladder infection and not leukemia related. He will be checked for signs of the leukemia coming back over the next several years, but there is no reason to think that will happen. The skin rash on the bottom of his feet and palms of his hands has cleared up and there are no signs of the GVH now. We feel like we have made it over another hurdle because cutting off the Cyclosporine drug cold turkey like we did often will induce GVH. It is usually weaned over several months. So the new bone marrow graft is working properly.
Josh tried out his new wheel chair tonight and even went downstairs for some "chocolate-eclair ice-cream". We believe that getting him out and doing different things will help his recovery. It is still possible that he will come home at the end of this week or first of next week. Again, we do not know, and probably will never know, what caused this complication for Josh. It may or may not be related to the transplant. Many things are very confusing and hard to understand. We just don't know why this happened and we don't know what tomorrow will bring. What we are doing now is concentrating on rehabilitation.
Sunday, May 5, 1996:
Not a lot of changes since our last update, except that Josh was thrilled to be with his mom. They had a great weekend playing and laughing. That is good that his spirits are high!!! His moods are getting better and should continue in this direction as he is weaned off of the high dose of steroids. Another side effect of the steroids is kicking in. Today he ate two bowls of cereal, a jar of pickles, four slices of pizza, one can of peaches, half can of pears, ice cream and two cans of pop. For a boy that has not eaten in two months that's a lot. Josh had one of the general antibiotics withdrawn because they have identified the infection within his bladder. The doctors have asked us to force Josh to sit up more throughout the day to prevent pneumonia from setting in. He is sleeping on his sides by night and sitting on his rear by day. His legs must still be elevated as much as possible to prevent so much swelling.
Last Friday three of his teachers from Calvary Kiddie Kollege came up to visit him and they showered him with gifts. He enjoyed their visit and had a great weekend playing with all of them. Dad is leaving Elkhart in the morning after dropping the other boys off for school and mom should be back in time to see Jason's second baseball game. If Josh is up to it the boys will visit him this weekend.
Friday, May 3, 1996:
We would like to let you know that we have some problems with our Home Page and should have the problem corrected soon. We have somehow lost or should I say misplaced the disk that contains Josh's Home Page. This is understandable considering the stress we are under.
We would like to start today with the major point that things could be worse. As dad was leaving Riley's today he spoke with the last family that was there on March 4, 1996. Life and death struggles seem to bring all the families on this unit close together and we all share in the joy and sorrow of our children's struggles for life. This family's 10 year old son will not live to see the light of a new day as his struggle for life has came to a close. It has been a hard week and a half as we have watched and listened while three of our Riley friends have passed away away. It has been difficult for us to face the fact that life is not fair, but at the same time we must learn to move forward. Say a prayer for this wonderful family.
Josh has physically deteriorated considerably over the last 24 hours. They have brought in an air mattress to help with the bed sores and we are trying to keep him rotated every couple of hours. He has also developed a bacterial infection within his bladder and has been receiving two IV antibiotics to help him fight this off. As of this evening we have no news about his sore throat. Josh's moods are getting better every day as he is accepting the fact that he can not go home anytime soon and his legs are not working. Josh has really great blood counts and only a small amount of GVHD, but we must remember that Josh is in a very compromised state of health. He is still immune suppressed which makes it difficult to fight off infections.
Prognosis, prognosis, prognosis!!! We must all come to grips with the realization that Josh may not ever walk again. That does not mean that we should all give up hope either. We will fight and struggle with every ounce of energy left inside us. The team of doctors are not expecting any real progress for about 2 weeks. They think that most of his progress will be made from 2 weeks post to 6 months post. From 6 months post to 9 months post there might be a little more improvement. From 9 months post to 12 months post very little improvement and almost no improvement post 12 months. Arrangements are being made to prepare our house for some wheel chair accessibility and many other special needs that Josh will have upon his return home. When is Josh coming home? Good question, at this point we think that if he does not deteriorate much more and there are no more bumps in the road (yea in our dreams) he might get to come home the week of May 15th. Keep in mind everyone involved is in uncharted territory!!!
As for mom and dad this has been a very large pill to swallow. We were prepared for the worst during the transplant and we thought we handled things pretty well then, but we are not sure that we are handling this as well. In Josh's presence we are all smiles and positive influence, but away from Josh we are sad lonely people. As we have stated time and time again Josh is the real trooper in all of this. He is the one going to hell and back for the second time in 2 months and may God continue to keep him alive. It is time to close for the night as I can see that I am starting to feel sorry for myself.
Wednesday, May 1, 1996:
Bingo night at Riley! Josh won two bingo's and four bingo pictionaries tonight. He is still very upset about everything and the Bingo didn't cheer him up very much, but at least he was willing to play. Josh visited the opthamologist today and the nerve in his brain is now functioning properly. His double vision is gone. The paralysis has also receded some and he now has feeling down to his belly button. Also, it is symmetrical now where before the right side was worse than the left. These are very good signs. The doctors have prescribed support hose for Josh to prevent blood clots in his legs and intensive physical therapy will continue. The doctors have discussed long term possibilities and, although we are hopeful, there is no guarantee the paralysis will reverse. Even if it does it may not be complete and he could be left with some deficiencies. We may be facing anywhere from a few weeks to several months of rehabilitation.
Although Josh has been preliminary diagnosed with ADEM the doctors have not ruled out the possibility of a reaction to a drug called Cyclosporine. Therefore, he has not taken any since Saturday morning. The purpose of the drug was precautionary and was to control Graft vs. Host Disease (GVH), which is the process of the new marrow rejecting Josh's body. Last night we noticed the first signs of GVH with a skin rash on the bottom of Josh's feet. Right now we are just monitoring this to see how it develops. We are not sure what will be done if it worsens. Another development is a sore throat for which a culture will be drawn. Because of this Josh is not talking very much and now the doctors are concerned with his speech. There were changes in his brain between the first and last MRI that would be consistent with speech impairment. The doctors will keep a close watch on this.
The plasmapheresis is going well and may be what is helping Josh right now. It will continue until Tuesday and he will then go back on IVIG for a few days. (He was taken off this because the plasmapheresis was defeating its purpose) He is also being weaned off the heavy doses of Solumedrol and will be put back on Prednisone. The last time he was on this he was eating us out of house and home! It would be nice to see Josh eat like that again.
Tuesday, April 30, 1996:
Josh had another MRI last night which showed swelling of the spinal cord from the C-3 vertebrae down, (C-3 is around the neck area). He is still paralyzed from his diaphragm down. The diagnosis the doctors have come up with is Acute Disseminated (post-infectious) Encephalomyelitis, (ADEM). The research conducted by the doctors revealed cases of ADEM that have been treated aggressively with positive results. The aggressive treatment used is called plasmapheresis and is described by the doctors as an "oil change". Over the next several days they will take out Josh's plasma and replace it with 5% Albumin. Josh's central line does not have a large enough catheter for this process so he had a new central line implanted in the other side of his chest this afternoon. It was a minor surgery using a local anesthetic and was performed in his hospital room with no complications. His spirits are pretty low right now and he has been blaming this on losing his "magic" card. Mom searched the whole house this evening and found the missing card! The patient in the room next to Josh, Allison, is also from Elkhart and her father is returning to Indy tomorrow morning. Arrangements has already been made for him to take a few things with him for Josh and dad. Josh was very excited to hear that his "magic" card is on its way!
Josh's last plasmapheresis will be Tuesday. It is possible he will be coming home sometime next week so dad will begin training tomorrow on the new procedures we will be doing at home for Josh. The people at the hospital are also making arrangements for the necessary equipment (wheelchair, handicapped parking stickers, etc.). Again we count our blessings as today we learned that another transplant patient passed away Saturday night. Our hearts go out to her family.
Monday, April 29, 1996:
Josh is still in the hospital and it looks like he will be there for a while. Saturday morning Josh's right leg began to hurt and he could not put pressure on it to stand. The neurologists were called in to access him and they said the reflex in his right ankle was impaired. The double vision and vomiting also continued. The nurses began doing neuro-checks throughout the day, and by late afternoon he would not even try to move his legs. He had been awake since 3:00 a.m. so he slept from late afternoon until about 8:00 p.m. He woke up when the nurses changed shifts and the night nurse came in to do his assessment. It was at this point that we knew something serious was going on with Josh. He had no feeling in his legs and was not able to urinate. He was no longer vomiting because he had no contractual ability to bring anything up from his stomach. He was paralyzed from the waist down.
Immediately the doctor was called and she called in the neurologist. An MRI was scheduled for as soon as a radiologist could get there. It was 10:30 p.m. by the time we took Josh downstairs for the test and the paralysis was moving up toward his chest. The MRI took three hours and we moved him back to his room around 2:00 a.m. The director of neurology came in at 2:30 a.m. to let us know they did not see any compression of the spinal cord so he did not have a blood clot, tumor, or other obstruction that would be surgically removed. The director of the transplant unit had already begun doing research to try to find out what was going on with Josh. Again we heard those dreaded words "rare", "out of the ordinary" we've never seen this before" and finally, "I don't know". (Here we go again!)
Neurological assessments continued every hour throughout the morning. The neurologist would take a safety pin and start poking Josh, moving upward on each side of his belly until Josh could feel it and they would mark on his belly with an ink pen. The paralysis continued to move up and was higher on the right side. Every two hours Josh had a respiratory assessment. By around 7:00 a.m. the transplant doctor told us he had contacted the Intensive Care Unit (ICU) and told them to be prepared for Josh. If the paralysis reached his respiratory system he would be moved to ICU and put on a ventilator. He also told us that they still didn't know what this was but thought it was some kind of autoimmune reaction to a viral infection. This means Josh's immune system had not only fought off the virus but was attacking his own central nervous system. They decided to "throw the kitchen sink" at him and began treating him with massive doses of Solumedrol, a steroid.
Josh's paralysis finally stabilized within two centimeters of reaching his respiratory system. We believe the night nurse, David, saved Josh from being sent to ICU and put on a ventilator by acting so quickly. We were reminded of how skilled the nursing staff at Riley's is and we are very grateful. We also continue to count our blessings and our hearts go out to the family of Melanie, a transplant patient that passed away Sunday afternoon.
Friday, April 26, 1996:
Good news/Bad news. Josh's spinal tap showed no leukemia cells today. There were eight white cells in his fluid, but the doctors said that was OK. The doctors gave him the first of six chemo-therapy treatments into his spinal fluid since he was already performing the spinal tap. He was scheduled to receive this soon anyway. The chemo drug was Ara-C. His vomiting and double vision continues so he saw an opthamologist and received a neurological exam. They said it appears that the sixth nerve in his cranial cavity is not functioning at full capacity which is causing the vision problem. There are a couple of different ways to treat this and they decided to keep Josh another night and will decide in the morning on a treatment plan. At that time they said he would be released Saturday if he did not spike a fever and if nothing else changed. Unfortunately, he spiked a fever at about 10:30 p.m. His temp was 101.8 F. Of course this means more blood cultures. The cultures taken at Memorial in South Bend had come back negative, but the doctors have not ruled out a viral infection.
Josh was admitted to Riley Children's Hospital in Indianapolis today. His vomiting continued throughout the last night and this morning and he is experiencing double vision. He is scheduled for a spinal tap tomorrow to see if the leukemia has spread to his central nervous system. Josh had a cat scan this afternoon to check for pressure on the brain. The cat scan was negative and was done as a precaution before the spinal tap because the procedure can not be performed when there is pressure on the brain. The doctors do not expect to find any leukemia cells in the spinal fluid, but need to do the spinal tap to rule this out. They expect to release Josh tomorrow afternoon.
Wednesday, April 24, 1996:
Today Josh made an unscheduled trip to Riley's satellite clinic at Memorial Hospital in South Bend, IN. He had been throwing up every couple of hours for about 24 hours and was running a low grade fever (under 100 F). He received Zofran through IV to relieve the nausea and blood cultures were drawn to look for possible infection. The oncologist examined him and did not see a need to admit him so he was sent home. He can take Zofran orally at home and we will be monitoring his temperature. Hopefully, if his fever doesn't spike to over 101 F, this will blow over soon without a hospital stay.
Josh's blood counts continue to climb and his AGC was over 3,100! He is adjusting to being home and playing with his brothers. His brothers are adjusting as well. We never thought we would see the day that we would enjoy hearing the boys fight. Now, it is music to our ears. Jason and Chaz are also learning the routine around here. We rarely have to remind them to take their shoes off when coming inside or washing their hands. We will see how long this lasts!
Monday, April 22, 1996:
Day forty post transplant and Josh is progressing along nicely. His white cell count today was 4,100, ACG of 1,900, and platelet count of over 109,000. At this time Josh should be transfusion free. Yes, that is right no more blood products for Josh. Many issues were discussed today at his clinic visit and we will cover most of them here. The main thing is that Josh is home and is extremely happy to be back with his family. He had a fun filled weekend playing computer games, movie watching, and even some more nerf baseball. Nothing got broke because there is nothing left in our house to break.
Josh is on oral medication called Cyclosporine that helps to prevent Chaz's T-cells from attacking Josh's body as a foreign body (like your T-cells attack bacteria or some form of infection). This medication helps to suppress Graft versus Host Disease (GVHD) and is currently at a high blood level. Again this dose of this medication has been lowered. We will be doing more blood work this Thursday to determine if the level has dropped to the appropriate level. On the down side Cyclosporine has one major side effect and Josh is already starting to show these. It causes thick hair growth (very dark in color) at the base of the neck, through the eye brows and above the upper lip. He was not thrilled at all to hear about this. For those of you that may see Josh in the future please make no comments about this until he has adjusted.
The next topic to cover is that Josh's steak in a bag has been cut from 14 hours to 12 hours a day. This is a good sign indicating that Josh is starting to eat and drink more. We hope that by the end of the week he will be intravenously fed only 8 hours a day. He is still experiencing withdrawal symptoms for this wean and they will continue until he is finished being fed intravenously.
The doctors asked us to start taking Josh on short walks outside when there is little or no wind. He must be dressed in long sleeve shirts or jackets, wear a hat, latex gloves and a face mask. We can only do this when there is little to no wind, but it will help with Josh's psychological well being. He is suffering mentally from the isolation and little things like a short walk would be very beneficial for him. We cannot imagine what is going on in Josh's mind after all he has been through, but it must be very tough for him. We know that he is struggling to come to grips with the situation at the present time, but we believe he will over come this.
Last but not least, there was discussion concerning milestones of a bone marrow transplant patient. This has been a very confusing aspect for us and we tried to clear it up today. We were told that all milestones are generalizations and vary from patient to patient depending upon the individual progress. So, while we tried to educate ourselves about this process, we read things and discussed many issues with the Stem Cell Unit doctors that at the time were generalized. If we have confused you on the rules Josh must follow we apologize, but we have also been confused. This has been a great learning experience for all of us and will continue to be a challenge. We still feel strongly that we must take every precaution we can for Josh.
Saturday, April 20, 1996:
It has possibly been the best three days of our life's reunited under one roof. Josh is thrilled to be around familiar surroundings and playing with his brothers. We really have nothing medically to speak about because Josh will not be seen again until Monday. We will post an update after Monday's appointment. There was a mistake with the April 18th update. We are not doing a biopsy on Josh's lungs at this point. We stated that we would be doing one, sorry about this. Josh has began to eat more and for the first time since March 4 says his taste might be on it's way back. Josh is playing nerf baseball with everyone in the house and seems to be hitting really good.
Friday Josh spoke to his classmates over the phone and he was scared to talk back to them. He told mom and dad that he did not know what to say to them because it has been so long since he has seen them. We told him that they are the same children he knew when he left. We think that Josh is struggling mentally adjusting back in the real world. We can not imagine what he must be thinking.
Thursaday, April 18, 1996:
The Wizard the wonderful Wizard of Riley's told Josh to close his eyes, click his heels together three times and say three times there is no place like home. He closed his eyes, clicked his heels together three times and said there is no place like home, there is no place like home, there is no place like home. And magically Josh was home!!!
It finally happened Josh returned home at 10:15 p.m. on Wednesday April 17, 1996. He came in like a stealth fighter pilot under the cover of darkness. As dad carried him from the van into the house his eyes had one of the happiest sparkles that we have ever witnessed. The first thing Josh saw was three balloons and a teddy bear given to him from the Red Cross chapter of Goshen congratulating him and welcoming him home. The next thing Josh asked to play some Gator Golf (this was one of his favorite Santa presents). Chaz and Josh played golf for about half an hour. Josh then decided to see all the changes to his house. There were many things different, yet everything he wanted was there for the taking. At 11:30 Josh and Chaz went to bed so they could start their new beginning as a united family once more tomorrow. As for Jason he woke up for about 15 minutes to wish him happiness and told Josh he was thrilled to have him home. They gave each other a smile and back to bed Jason went.
Josh had a good day at clinic yesterday. He has around 90,000 platelets, 4,100 white cells and AGC count of over 1,200!!! One of his medications (Cyclosporine) is at a high level count and has to be adjusted down. The level should be maintained around 200 and Josh's is running at a level of 400. This blood level will be monitored carefully over the next few days. Also the chest x-ray showed that Josh still has pneumonia in both lungs and is about the same as three weeks ago. Keep in mind that the word pneumonia is just a generic word for fluid on the lungs. We have no idea what form of fluid is there without conducting a biopsy and we are not about to do this at this time. Josh is loosing his eye brows at this time with his eye lashes to follow shortly. This will be trouble for him. He is again loosing more of his crown hair and is beginning to look bald up there.
Today Josh so far has eaten two chips and drank about 4 oz. of water. It's a start with a long way to go. He has been cut from 16 to 14 hours of steak in a bag. Now that he is home we will be working hard on getting him to eat. He is walking much better and continues to do physical therapy daily.
As for our house it was cleaned from top to bottom. Everything in our house was cleaned, carpets and furniture steamed cleaned, closets emptied and almost every nick knack packed away for a while. This could not have been done without the help of Kim's aunt, Cindy, who flew in from Nixa, Missouri. The staff at Riley's said that they have heard it all now. We are the first family to fly in a professional cleaner. She arranged many things including a new mattress for Josh's bed, pots and pans, and most of all a new Rainbow vacuum cleaner. This vacuum cleans with the use of water which prevents dust being released into the air. This was partially donated by Roger Maxwell of Aero-Tek located in South Bend. The building which was donated by Wolohan Lumber Company and Concord Little League is full of household belongings. This will make cleaning much easier. Again we thank Cindy for all her effort!!!
In closing today we would like to thank everyone all over the world (we received e-mail from as far away as Germany) for thinking and praying for Josh. We believe that with your help Josh has progressed very well. If everyone could say a prayer for Allison Berkley who is a 6 month old baby who will be under going a Bone Marrow Transplant without any radiation treatments starting this coming Monday. She is located within the same school district as Josh.