Wednesday, March 12, 1997:
Josh has taken his first steps, one foot in front of the other since April 25, 1996. He received his new bracing system last Wednesday, but it took several days to fine tune it with many adjustments made. We think there are a few more adjustments to be made, but hopefully we can have them finished by the middle of next week. Josh’s body is really bruised from all new pressure points. At first Josh would pass out after being taken out of the jacket, NOT GOOD!!! We have that problem taken care of now. He is currently up to 5 hours a day in his body jacket and over 600 feet walking. He said today that the jacket really makes his back feel better. He is asking to wear it. We thought we would have to fight with him to wear it. This just shows us that you can never figure children out. Hopefully this will stop and maybe even help correct the scoliosis.
Josh was so excited about taking steps he made dad bring them to school last Thursday to show his classmates how they work. Talk about twenty questions. His classmates were so excited for him. They asked so many questions about Josh and how the system works. They were happy and Josh was happy. Thanks to Mrs. Van Elk for letting Josh do this. Also we have decided against a full time aid at school for Josh. He seems to be doing fine as is.
Josh’s therapy plan has changed and we hope to be finished driving to South Bend, Indiana in about six more weeks. Currently the therapy plan is as follows. Monday, Wednesday, Friday at South Bend, Indiana for 1 up to 2 hours of intense therapy. Tuesday and Thursday mornings plus every day after school dad has made arrangements with the school to use their hallways for walking. On the weekends we can be found at the local mall walking in the back hallway. Again, Concord Eastside has went out of their way to help us !!! We thank all of the staff especially Dr. C.
Our goal is to get Josh up and walking part of the day, but he will always need his wheelchair. The bracing system will only work if Josh does not have to expend to much energy getting from point A to point B. Time will tell.
The other issue to be resolved at therapy is making Josh less dependent on mom and dad. The goal is for Josh to think ahead and be prepared to do things on his own. An example of this is at bedtime getting his clothes out and onto the bed for the following morning. Then in the morning he can get himself dressed and transferred into his chair by himself. We would also like to see him transfer himself from his chair to the bed, chair or wherever he would like to sit. Bathing is an issue to be addressed later on. At this point mom and dad will still need to sterile cathaterize him until he can go to a clean technic. This can not happen until his immune system ( T-cell count) is higher.
What we are starting to understand now is that many people check in on this HomePage. It has served several purposes, but the most important purpose that it has accomplished is giving families in similar circumstances a place to go. Because of Josh’s Page we have made contact with at least 5 new families whose children have been diagnosed with Phildiaphia positive Acute Lymphoblastic Leukemia. This is not to take away from the countless number of people from all over the world who write to us and the many friends here in Elkhart, Indiana. We thank all of you for caring. We will update on Monday, March 17, 1997.
Josh turns 8 on Tuesday, February 18 and it will be his 349th day post-transplant. On Sunday Josh invited his whole class to a birthday party that went very well. He had a wonderful time with all of his friends. It is so good to see him happy. .
Since the last time we updated Josh has had several small events. First the MRI performed on Josh in late January showed the scoliouses has made large enough progression to warrant some concern. We are hopeful that Josh's new upper body jacket will slow, if not stop its progression. Surgery will not be performed on Josh unless the scoliouses progresses to the point of interfering with his breathing or possible damage to another organ. So at this point we will just monitor the scoliouses regularly. .
Josh had his monthly blood draw earlier this month and everything looks fine. Still not a lot of change with any of his counts, but at least there was nothing to be concerned about. Bottom line is still no cancer issues to discuss!!! Josh is due in Indianapolis around the middle of March for his one year work-up. Our understanding is that this will take a large portion of the day because they will check him out thoroughly.
In a couple of weeks Josh will be in his new walking braces for the first time. Last week he had a final fitting of the lower leg braces and upper body jacket so they could be sent out to California for construction. Final adjustments will be made upon arrival and then we will put him in them to start learning what is called the basics of gate. Gate is a term used for how this system works. Josh is looking forward to actually walking with one leg in front of the other. At this point he is up to 500 feet of walking with his feet together. He is getting stronger in his upper body and is regaining small muscle movement in his lower extremities. We think that Josh will be in physical therapy at South Bend for maybe a few more months. After he learns to manipulate his new bracing system they will discontinue physical therapy. At that point we will get Josh's physical therapy done closer to home and hopefully only once a week. The burden of physical therapy will be put onto Josh, Mom and Dad even more once this happens. It will be our responsibility as it is now to keep Josh in good shape. Josh's physical therapist has done a wonderful job with him.
Finally we will discuss our visit to the Chicago Rehabilitation Institute of Northwestern University. They are not neurologist, but rather rehabilitation specialist. We were misinformed or better put misinterpreted this information. Anyway they gave Josh an evaluation and are giving some recommendations to everyone involved with Josh's care. First and most importantly they want to have an ultra sound of Josh's kidneys to make sure that there is no damage to them now. With Josh not having the ability to expel urine they are concerned of kidney dilation. They recommended that we go back to catheterization at least three times daily. They also want us to start training Josh with his bowel control. This is accomplished by giving him a suppository after the evening meal so that he empties his bowels daily. This will prevent him from having accidents throughout the day and will be better on his body. This will take about two weeks of training. Both of these have to be approved by the Stem Cell staff at Riley's. We are not sure if we can perform these now with Josh's low immune function. We hope to have an answer within the next few days.
They really liked Josh's wheel chair, but thought a few adjustments should be done. All of these will be carried out except for the angling of his wheels. If we angled his wheels he would not be able to get around in our house. They recommended that Josh wear his upper body jacket only during the times he is upright and not during time outs or at night. They also really like the fact that our physical therapist has gotten the ball rolling with retractable braces. If Josh can manipulate them they will help him in many ways. They would like to get the ball rolling for a full time teacher/nursing aide at school for Josh. We will sleep on this recommendation for a few days. This person would help him learn to be functional in the real world, work on physical therapy and occupational needs.
They also told us what to expect out of Josh over his life time. We have heard this before, but still have a very hard time accepting it. They told us that they have seen thousands of children with partial blocks of the spinal cord and that Josh has not made enough progress at this time to ever walk again. They said that if he can manipulate the new braces he will do very well in them for a while. Eventually he will lose the ability to manipulate them and end up back in his chair. It will work just like a bell curve. This is a hard pill for us to swallow. We know deep down that it might be true, but it is something we do not want to give up on. We will only tell Josh want is age appropriate. We feel it is not beneficial to tell Josh any of this at this time. The mind is a funny thing and we want him think positive.
Finally we are trying to sell our house so that we can build a new one. We would really like to build a house that is functional for Josh as well as for us. Josh is not going to get any smaller and it is going to get harder and harder to accomplish some basic things in our current home. We will update again around the first of March to let you know how the new bracing system is going.
Today not only marks the beginning of what we believe will be a great year, but it also marks Josh's 312th day of FREEDOM!!! We will get all the formalities out of the way first. We truly hope that everyone had as wonderful of a Christmas as we did. We still are not sure how Santa got down our chimney with all those toys. Nevertheless he did and he left a lot for all of the boys. Mom and dad did not do to badly either.
Josh was seen in Indianapolis on Monday, January 6, 1997 by both the Stem Cell staff and Orthopedic Surgeons. At the Stem Cell unit Josh had a normal blood draw, check-up and he also had another immune function test performed. His blood counts remain steady with no major gains or losses in any area. His immune function test will take about 10 to 14 days to come back. We will post these results when we get them. There is no other issues to discuss relating to cancer. Josh seems to be doing just fine there. What did come out of our visit to the Stem Cell unit was a referral for Josh to be seen by another neurologist located at Northwestern University Pediatric Center in Chicago, Illinois. We will be traveling there February 14, 1997. We are hopeful to find a doctor who can communicate not only to us, but also to the staff at Riley's. Riley's is and will always be a big part of Josh's life.
Josh had some x-rays taken of both legs and of his spine. The leg brakes from this past summer look really well, but his spine does not look so good. The scoliouses, (curvature) has progressed rapidly enough to warrant some real concerns from his Orthopedic Surgeon. Josh has been scheduled for an MRI on the 21st of this month to get a closer look spine. It is not the worst case of scoliouses that he has seen, but he has not seen this kind of rapid progression before. Surgery is still out of the question because of Josh's low immune function, so our main goal is to prevent the scoliosus from getting any worst. They are very happy with the tone of Josh's legs and his upper body strength. In other words we are staying ahead of mother nature at this point.
The next day we went to physical therapy with Josh for a consultation to determine if Josh has the ability to operate some full retractable leg braces. During this visit we mentioned the scoliouses and ask would it impair his ability to operate these braces. They were not sure if and how to correct the scoliouses so at this time a phone will be made to the Orthopedic Surgeon to get some questions answered before they proceed any further. So at this time we think the game plan is this. Remember things change on the drop of a dime here. Josh will be fitted with the full retractable leg braces so that he can start learning how to walk in them. At night time or whenever he sleeps a full upper body jacket, (cast like) will be worn. The purpose of this jacket is to pull his spine back in the opposite direction of the curve to prevent the scoliouses from any further progression. In other words Josh will be sleeping in a "C" position on his back or stomach.
Now for some really exciting news. We saw a movie with some children using the same braces that are being built for Josh and it looks as though Josh will be up and walking soon!!! They are operated by one's ability to shift weight at the hip, side to side. By lifting and shifting the brace retracts on its own and then throws the leg forward. Very similar to how you or I walk. Josh has this ability and has good balance skills. Everyone thinks that with the aid of a walker and the retractable braces he is only a few months away from being mobile again. This is progression in right direction as far as we are concerned. Josh is very excited about this too.
The other big news is that Josh started back to school this week and had a wonderful time there. The school has gone out of their way to help with his transaction back. They have even offered to take Chaz three mornings a week as a special helper while Josh attends physical therapy. This makes Chaz feel very important and we hope this will help with his self esteem. This also gives dad a few extra hours of needed rest. This whole ordeal has been very hard on Chaz. If any one person in our family has suffered more (besides Josh), we do not know who it would be. Chaz kind of was lost in the shuffle and it was just recently that we realized where he was mentally. We broke one of our own rules. Well, we broke many rules along the road to hell and back. Take care our many friends and we will update with a short message after we get the immune function test back and then again around February 15, 1997, after our trip to Chicago.
Yes, we are late with our update, but Josh has made it to day 291. There is not much to report except that all the boys Jason, Josh and Chaz are looking forward to Christmas!!! Kim and I have made final arrangements for Josh to return to school on January 7, 1996. Today Josh took all his supplies to school and partied the afternoon away.
Physical therapy is going well and Josh has been sized up for a new set of braces. These braces will enable Josh to walk with the aid of a walker. He is very excited about being so close to being on his feet again. It will take some time to learn how to use these, but we are sure he will. With these new braces he will not be able to do anything but stand up with them. After a while in these new braces another set of braces will be built to make him even more mobile. The second pair will be retractable. In other words he will be able to move them with his hips. They look like a lower leg cast with metal braces coming up to the hip and a back support up to the middle of his back. After he is in these braces we will put a picture up on the web for you to view. The bottom line here is that Josh will be a little more independent.
No cancer issues to report on today and that is GREAT news. Josh has came a long way in one year. Last year at this time Kim and Chuck were wondering if it would be the last Christmas their whole family would have together. Well, we have been blessed and it was not our last Christmas together. We are hopeful that we have many more to share in the future. We want to take this opportunity to thank everyone for all the things you have done for our family.
It has been a tough year and our lives have been forever changed. Things will never be the same here, but that does not mean that life has stopped. In fact, we have done many things this past year that we may not have taken the time to do otherwise. We vacationed at Disney World, went to a double header at Wrigley Field in Chicago, have seen just about every Disney and/or children's movie at the theaters that came out this year and we met a few celebrities including Gale Sayers. Jason is back doing all his sports and Chaz started kindergarten. Chuck is back with his former employer, Bayer Corporation, on third shift and Kim is looking forward to another busy season (or should we say looking forward to April 15, 1997!) at Crowe Chizek.
As for Josh, he has recently been given a clean bill of health from all of his doctors. He is in total remission and is beginning to look like the old Josh we all knew. He is still paralyzed from the waist down, but is making great progress. He is able to move his left foot up and down on command. He is able to push a little with his thighs to help straighten out his legs. We had a customized wheel chair built for him that has made everything more accessible to him. He has adjusted well to his new environment and is a very happy 7 year old. He is looking forward to returning to school this January for the first time since February 1996.
The Eatons would like to wish everyone a very Merry Christmas and a Happy New Year. May all your holidays be grand. Thanks again for all the thoughts and prayers because they have been answered.
Just a short message (ha ha ha) to let everyone know that we received word last Friday from Indianapolis about Josh's test results. We have waited until today to post the results just in case something was wrong with them. We now realize that our prayers were answered and the news we received was true. There is NO EVIDENCE of that nasty little Philadelphia chromosome!!! Josh has not relapsed. Maybe Josh will be one of the lucky ones with this terrible desease to beat it and become a long term survivor!!! If the price of life for Josh was the use of his lower extremities, it was a small price to pay in the realm of things. We thank all of you for your support and please continue to pray that God will bless our family in the future.
Some news about Josh's lower extremities follow: Physical therapy continues to help with the strengthening and stability issues. Josh is making wonderful progress now. He is now able to raise his left foot on command and has the ability to support his thighs in while laying on his back. His trunk strength is getting really good which is a great sign towards walking in the future. He is now up to 20 push-ups every hour and after Thanksgiving he is to increase up to 25 wheelchair push-ups. Think that sounds easy? Try it some time in the future. Just set down and push-up your body and legs with only your arms. Anyway he is getting there.
The other news is that dad has accepted a job back at his previous employer, Bayer Corporation with the third shift Quality Assurance team. He is currently training on the day shift and after the first of the year will move to third shift. This will enable him to provide the same medical insurance and earn some needed funds for the family while assuring that Josh will continue to meet all his medical obligations.
Josh is due back in Indy January 3, 1997 for check-ups in both Stem Cell and Orthopedic Surgeons. He has a neurological check-up December 12, 1996 and his physical therapist will attend. We want to make sure we are all on the same page and have the same long term game plan for the future. We are in process of getting a second opinion from another neurologist. We will keep you posted on this issue. Our next update will be around December 15. Again we want to thank everyone for their thoughts and prayers. May everyone have a Happy Thanksgiving because there is so much to be thankful for, we know.
Day 250: Josh had his central line removed yesterday with no complications. He was lightly sedated and the line removed within fifteen minutes. The Stem Cell staff then did a bone marrow aspiration and a spinal tap. Preliminary results from both revealed no relapse or leukemia blasts in the marrow. The central nervous system fluid indicated preliminarily that no increased inflammation is occurring presently. All of this went as expected. We are more concerned with the results that we should receive within the next ten days. Further sophisticated testing will be done to determine if the Philadelphia Chromosome is present in Josh's new bone marrow. DNA testing will also be conducted to determine who's marrow is growing. The DNA test should be no different than they were several months ago which indicated that Josh had 100 percent Chaz's marrow. Everyone involved is anxiously awaiting the genetic report. All the staff has expressed extreme happiness that Josh has made it this far without relapsing. Because of the nature of the Philadelphia Chromosome positive ALL, relapse is still a very strong possibility. As soon as we receive word we will post results.
Josh has been fully released by the Orthopedic Surgeons for impact weight bearing. They are finally convinced his bones have healed enough to further implement a more rigorous therapy. Josh is to be seen in another month by them for further consultations. As far as physical therapy, Josh is making tremendous gains daily. Josh has greatly improved his trunk strength which directly affects his ability to stand with help. We would like to clarify from the last update that Josh is only able to stand and take steps with help. The best news is that Josh is able to lift his left foot on demand. Keep in mind he is only able to lift it an inch but it is an inch further than he could two weeks ago. We believe he is able to put resistance into both lower extremities while we attempt to bend his legs upward. We will keep you posted on further progress.
We thank everyone for the extra prayers and thoughts.
Day 236 and today is Josh's bone marrow donor's birthday, his younger brother Chaz Eaton. Tonight we will celebrate his birthday with a new perspective towards life and towards Chaz. Josh is giving Chaz a special present even though it is not quite the same gift that Chaz gave to Josh, life!!! We are very glad to be celebrating this occasion with all the family.
We received the immune function test results and they are not real good. We do not completely understand all of the results because of how complex the immune system is, but what we understand is the total immune function response. Josh has 10% function at this point which was a little disappointing. We were hoping for a response around 30% function. A decision has not been made as whether to send Josh back to school in January or not. We are all leaning toward sending him back with some form of restrictions. It would be in the best interest of Josh to send him back for contact with other children his own age. He is wanting to return as soon as he is able. We will conduct another immune function test toward the middle to end of December and make our final decision then.
The exciting news from physical therapy is that Josh is standing with help and has taken his first steps since the middle of April 1996. He is making exciting progress in his lower extremities and everyone is very happy about that. We are able to feel his hamstrings twitch as he tries to push with his legs. We will keep you posted on future gains as he recovers.
Josh will be taken in for surgery on the 18th of this month for many reasons as stated in the last update. There will be a lot of sleepless nights until all the results are received. If everyone could say an extra prayer for Josh it would be appreciated. We will update again shortly after the 18th and have his new page, Josh's Celebrity Encounters completed by then.
Day 223 and this will be brief. (Yea, right!) Josh traveled to Indianapolis Monday visiting all his friends at Orthopedic Surgeon Clinic, Stem Cell and Massage Therapy. At the Orthopedic Surgeons' all the X-rays showed excellent improvement. The femur break on the left leg is almost non-distinguishable. Keep in mind, if Josh regains use of his lower extremities this will need to be surgically repaired. The tibia fracture on the right leg is still visible but has healed nicely within the last 30 days. To put this into perspective, Josh fractured the tibia in late June. This should give you an indication of how immune depressed he is. The Orthopedic Surgeons were very pleased with Josh's new wheelchair. They also approved the new lower leg splints. As far as they are concerned, Josh has been released to full non-impact weight-bearing. In layman's terms, during therapy Josh may stand and kneel with support. Orthopedic Surgeons requested that Josh have upper leg and knee braces molded for use during standing therapy. Needless to say, this is already in progress through our new rehabilitation center.
Our visit at the Stem Cell Clinic was brief but very eventful. First of all, Josh's blood counts are on the same level as our last visit. We consider this good because we don't want to see big changes at this point. We are conducting immune function testing for determination of, not only where Josh is now, but also to determine if he may return to school in January. The cut-off factor for returning to school is 30% function. If Josh is not at 30% we will address a possible modified school week. We will post these results as soon as we know, which can take up to two weeks. Everyone there thinks that Josh looks great. Josh is scheduled for surgery November 18 for central line removal. We have also requested the doctors perform a bone marrow aspiration, DNA testing, FISH test and a spinal tap. During the spinal tap nothing will be put into the central nervous system. These are being done to ease our minds and is not their standard protocol. What was discussed that is also not standard protocol, is the care Josh will receive through his second year. It was determined to be in the best interest of Josh to have blood work continued on a monthly basis. The reasoning behind this is because this form of childhood leukemia is so aggressive and so deadly everyone wants to keep close tabs on it. It was also discussed that almost all relapses of this form of leukemia happen within the first two years. This is not to say that Josh won't relapse after two years but the chances decrease substantially.
Josh also received his monthly massage therapy that we truly believe is very beneficial to him. We can see and feel a difference in his muscle tone. The therapist again worked her magic putting Josh to sleep during the rub-down. Physical therapy continues to go well and we hope to make major gains over the next quarter. Thank you for your continued support.
Josh is at day 207 in his new adventure of life. His new wheelchair fits him like a glove. The chair is more user friendly and much more compact. Josh is now able to get into all the rooms in our house and get himself up and down the ramp for outside activities. The chair is light weight and easily broke down to load into a vehicle. Josh seems to be very happy with his new chair. We are trying to teach him that he does not have to go so fast just because the new chair is able to. We hope to accomplish this before he returns to school as to avoid possible collisions, (ha right).
Physical Therapy is moving along slowly now. Josh is unable to bare weight still, but we are working on muscle tone and strengthening. He has came along way since the bone brakes, but he is not back to where he was before the brakes. Josh is involved with electric stimulation of the muscles which is working out pretty well. He was scared at first and I do not blame him. He has adjusted well to the stimulation and is responding better. We are hopeful that we may begin to bare weight by the end of the month. This will happen only if the bones have healed enough and the Ortho group thinks he is ready. By the end of the month Josh should have braces on the lower legs to help prevent any loss of range in his ankles. We will update again in a couple of weeks.
Our hearts go out to the Yeakley family. Jennifer and her family have been very inspirational to us during the past nine months. We hope that they find peace and comfort in time.
Today is day 195 and Josh is looking as good as he has since diagnosis. Josh has received many comments that he is starting to look like the old Josh we all once knew. Josh received good news/bad news from the Orthopedic surgeons on his visit to Riley's Monday. The good news is that as he gets further away from the steroid intake the more calcium he is able to produce. The femur break is healing nicely (except for the shift which will be surgically repaired later) and Josh is no longer wearing any kind of splint. As for the tibia break, he is laying nice new bone down but has a long way to go. The Orthopedic surgeons have recommended that Josh continue no direct weight bearing from physical therapy, but they recommend indirect weight bearing through the use of therapeutic devices. The bad news is that Josh has developed scoliosis. At this point the X-rays show no permanent damage to the spinal columns and they are optimistic that this can be corrected through proper seating (new wheelchair) and constant posture correction. We are hopeful that Josh can lay down enough new bone that we may be able to start weight bearing within a month.
Josh had an excellent visit at the Stem Cell unit. Immune function testing will resume upon our next visit for determination for starting school in January. At this time he continues homebound tutoring through the school which seems to be going very well. He is also receiving extra help from Lisa Piechowiak which is really appreciated. At our next visit we will discuss a possible line pull date again but it was agreed that the Stem Cell unit will use their judgment in what's best for Josh. His blood counts are as follows, and keep in mind this is still a fragile new marrow. Hemoglobin - 11.2, Hematocrit - 33.4, White blood count - 3.4, Red blood count - 3.94, Platelets - 219K, AGC - 1833. Josh's nurse practitioner thought that Josh's color looked as good as she has ever seen it. It seems to us that Josh has hit a plateau with cancer related issues and we have finally normalized. We are not due back at Riley's for four weeks. We thank God for Josh's health and also for sparing us weekly trips to Indy.
Josh received another massage therapy while in Indy. These will continue every four weeks as we think these are very beneficial to him. At the sports center where this therapy is conducted Josh had his picture taken with, and received an autograph picture of, a former member of the Colts, linebacker Larry Padgen. He missed seeing Rick Schmitts of the Indianapolis Pacers by only a few minutes. Maybe next trip.
Tomorrow morning will be Josh's final fit for his new wheelchair. He is anxious, as are mom and dad, to receive it. In the next couple of weeks Josh will be fitted with braces on both legs from the knee down to help support his ankles and feet and to correct the foot drop problem which is starting to occur. At this point we are struggling desperately to stay ahead of mother nature. Although everyone involved is doing their very best for Josh, it seems we are finding ourselves one or two steps behind. We will update the home page in about a week to let everyone know how the new chair is going and will have more information on physical therapy.
Our hearts and prayers continue to go out to our friends in Irving, Texas. Jennifer Yeakley will be undergoing her second transplant soon. Jennifer is a very brave soul who has recently come out of a coma and appears to be on her way home for a while. We think of her often and if you could say an extra prayer for her it will be appreciated.