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 goin 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 judgement 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.
Ok fair worning this one is long!!! Today marks 174 days post-transplant for Josh. We hope that everyone had a nice holiday because we definitely did!!! First things first we will discuss medical issues for Josh.
Josh was seen by the Orthopedic Surgeons on Tuesday. The X-rays showed that his tibia brake on the right leg is heeling very slowly. It is stable, but cracks were still visible. His femur brake on the left leg is heeling well at this point. He still is required to wear a splint most of the time for extra protection. All in all we could classify this as a good visit. We were given permission to pursue physical therapy at a slow and gentle pace. In other words, work on range of motion along with muscle toning. Josh has lost some range and tone so it will take some time to regain these losses. We were told NO WEIGHT BEARING for at least three more weeks. It could be as much as four months before we can weight bear with the lower extremites.
We are hopeful to have his new wheelchair in the next couple of weeks. Josh has begun rehabilitation three days a week and it seems to be going very well. He likes his new therapist and he is moving very cautiously with Josh. We are hopeful that this works out to Josh's advantage. Dad will have to adjust his schedule to accommodate this. Dad's schedule is now traveling three days a week to rehab, once every three weeks to Indy, full time in home tutoring, regaining physical therapy duties, general nursing skills, insurance case managing and parenting in his spare time.
We visited the Stem Cell unit next. This was a quick check-up and blood draws. His blood counts are recovering nicely and the staff gave him two thumbs up. We will be doing more immune function test around October or November. As long as Josh can stay healthy there is no reason to try to boost his immune system. The thought is that since Jason and Chaz are back in school we will be testing his immune function through them with the sicknesses they might bring home. We are not due back to Indy for three weeks. That is right, three weeks. We can't remember when the last time, if ever, that we have not traveled down there at least every other week. May we dare say that we actually might be starting to normalize?!?
Now for the most important and exciting news to report. Josh received one more of his wishes over the holiday weekend. Untied Pet Foods, Inc. sent our family to Wrigley Field in Chicago, IL. to watch the Atlanta Braves play baseball. We all enjoyed not only one game, but two. We had no idea that we were attending a double header. Our seats were perfect, seven rows behind home plate. Everyone was pleased with the final scorces as Chicago won the first (Jason and Chaz) and Atlanta the second game (Josh, mom, dad and Chaz). Yes, Chaz roots for the winner. The boys kept the vendors hopping wanting pop, ice cream, peanuts and hotdogs. All the boys got souvenirs and Joshua received an offical foul ball. The hotel room that we stayed at was extremely nice and the boys really enjoyed the large game room and pool. Thanks again to United Pet Foods, Inc.
We had a get together with lots of our family this weekend also. Many aunts, uncles and cousins attended and many of them are the reason for this HomePage. Most have not seen Josh since before diagonsis and all agreed that Josh looks really great. Josh is starting to look like the old Josh that we all new a year ago. Josh also swam for the first time in more than a year this weekend. Not once but twice in the pool. When you look up the words happiness and joy in Webster's Dictionary the picture of Josh's smiling face appears. He loved the water. It did not take him long to figure out how to swim with his floaties and pushing down on his legs. We did not realize that his legs were so buoyant. It has been a long long time since we have seen him as happy as he was in the water.
Next update around September 24. Take care and thanks to everyone for their continued support in Josh's struggle for life.
Today is the 159th day post-transplant. Josh was seen by the Orthopedic Surgeons yesterday and they suggested that the X-rays showed a lot of new bone being laid down on the femur brake. The new bone being laid is also straighting out his sifted femur to a small degree. Josh will still need this surgically repaired in time. He was fitted with a molded splint to help correct the foot drop that is occuring in his left foot. This is where his foot is not staying at a nice right angle or neutral position, but rather pointing down. Today the splint was removed for inspection of his left heel which showed rapid deterioration over the past 24 hours. Needless to say, the molded splint has been trashed and we are back into a cylinder type splint. We hope we caught the heel soon enough to prevent further tissue breakdown.
We checked in at the Stem Cell clinic to discuss some of the events of last week. We also discussed future problems that may arise from Josh's immune depression. As far as having more infusions of IVIG, he may still receive these as needed but a different brand name will be used because of the reaction last week. Josh will continue weekly blood draws because of his high risk leukemia. The big news is that we have finally gotten to the point where he will only have to be seen in Indianapolis every other week. On the off weeks he can have his blood drawn in South Bend.
Our rehab appointment was re-scheduled for today. Josh was sized and fitted for a sleek, lightweight, aerodynamic, hot rod wheel chair. It will take two to three weeks to custom build his new machine. He even had ten colors to choose from and he chose his mother's favorite color, blue. Rehabilitation will begin Thursday, meeting three times a week at this point. Josh seemed happy with the therapist he met today and we hope this will be a good relationship.
Josh is not due back in Indianapolis for two weeks. Hopefully our next update will be around September 4th because we hope for a very uneventful two weeks.
Tomorrow Joshua ,will travel to Indy for another check-up so we thought we would catch everyone up as of today. Josh was released from the hospital Saturday afternoon. The diagonosis for this hospitalization was chemical spinal meningitis caused from the IVIG infusion from Wednesday. He will not be able to receive any more infusions of IVIG. Tomorrow we will find out if there are any alternatives to help boost his immune system at this point. He appears to be in good shape and his spirits remain high. All of the cultures came back negative.
Results from the neurologist are very encouraging. As everyone has suspected, it seems to be only a partial block in the vertebrae. The MRI films were reviewed and the neurologist showed dad all the cellular repair being made. The spinal cord, as we have said earlier, has made tremendous progress. An MRI was performed on Josh Friday afternoon and these films showed good improvement in his brain. The neurologist feels very confident that Josh should be able to regain use of his lower extremeties, but to what extent only time will tell. The neurologist is in agreement that all the damage was caused by some form of post-infectious virus. The other test result discussed was the sleep deprived EEG which showed Josh is seizure free.
We met with the rehabilitation specialist while Josh was in the hospital. Josh will begin his rehab program this Wednesday. The doctor wants to conduct this rehab on an outpatient basis and thinks that two to three times a week is all that Josh can handle. The rehab will be done in South Bend, and will begin slowly with a lot of game playing and getting Josh comfortable with the new environment. Ideally, we would have a pediatric spinal cord specialist work with Josh. Because spinal cord injuries are uncommon in children, there are no such specialists within a 60 mile radius. Therefore, we have opted, with the doctors advice, to have a spinal cord specialist who normally works with adults, as opposed to a pediatric specialist who does not normally work with spinal cord patients. The doctor suggested it is time to get off the roller-coaster ride and get some stability in Josh's life. Rehab will be approached as if no more progress will be made and will be adjusted if there is any progress. This doctor also explained to us that, although it is true that most progress will be made from day zero to six months, this progress will happen spontaneously, whether or not a therapist is involved. In layman's terms, Josh will repair the damage from a cellular basis, internally. The most important thing at this point is to not get in the way of the healing process. In other words, no more fractures!
As if Joshua did not have enough things going wrong with him to this point, he now has contracted some form of spinal meningitis. At 4:00 am this morning he woke up crying because his head hurt so bad it made him throw-up. Again at around 6:00 am. he woke up crying because his head hurt and then he threw-up again. At 8:00 am dad was in process of talking with the staff at Riley's when Josh threw-up again from the sever pain in his head. We transported him to Memorial Hospital in South Bend for a quick assessment of the situation and to load him up with antibiotics. Upon arrival the staff there as well as the staff in Indianapolis suggested that a spinal tap be conducted along with CBC and blood cultures. We also sent away a urine, throat, and rectum culture later in the day. These results will take a couple of days to get back.
As the initial central nervous fluid (CNF), was being drawn dad noticed that it appeared to be very cloudy. His observations were correct as the initial results showed a high number of white cells in the CNF which raised the suspicion of leukemia in his central nervous system. This was all taking place late morning and early this afternoon. By early evening leukemia had been ruled out!!! Thank God Josh dodged another bullet. The diagnosis was spinal meningitis. The staff seems very concerned with this situation since Josh already has sever damage with his central nervous system. He will be monitor tonight closely by the nursing staff and even closer by mom since Josh wanted her to stay tonight with him. Josh is being infused with four different antibodies and morphine bolus as needed for pain. This evening Josh has spiked a fever at 101.8 F.
As we gain more information about this situation we will provide quick updates. May God bless our son one more time.
Just a brief note to ask everyone to pray for a very good friend of ours from Irving, Texas, Jennifer Yeakley, as we have received word that she has relapsed with a secondary leukemia. This family has done so much for us in the past few months to help direct us down this adventurous road. We have learned what to expect and how to handle many of the obstacles that we have encountered through their strength and knowledge. If you would like to meet Jennifer, we have a link to her Home Page from our section entitled "Visit these Additional Sites". Our hearts and prayers go out to the Yeakley family at this troubled time.
Another eventful trip to Indy is over and Josh has now reached day 151. We will start with our clinic visit to the Orthopedic Surgeons. Josh had his short cast removed from his right leg and the soft wrap and splint removed from his left leg. We then proceeded to X-ray to get some clear pictures of his legs. Upon returning to the cast room the X-rays were examined and again we ended up with good news and bad news. The good news is that slowly but surely his right tibia is starting to lay down some new bone. It looked good enough that the cast was not put back onto his leg. We were told to be very careful with our handling of it, but that it should continue to heal just fine. Along with the new bone his tissue break down of the right heel has improved tremendously over the past week. If you were to see it you might not think it looks very well at all, but trust us it is much improved. Josh received his last dose of IV antibiotic today and we hope that his heel will continue to improve on its own.
Now for the bad news. As one of the Orthopedic Surgeons said the question is when is Josh going to have a good day? His non-displaced femur break of his left leg is now displaced. In other words it has separated and shifted 30 degrees off center. We were given three different choices for fixing this situation and we all chose the easiest and least invasive at this point. 1. Admit Josh into surgery to re-break the femur and put some pins into his leg to hold it in place, (no way with the chance of infection, tissue sensitivity, and other possible complications at this point in time). 2. Put Josh into surgery to re-break the femur and put him into a full leg cast, (no way with his known tissue sensitivity and taking a chance of breaking another bone while doing this). 3. To leave it alone right now and play the wait and see game. In other words if Josh regains his ability to walk in the future we will in all likelihood perform choice number 1 with the pins. His body and immune system would be able to handle that in the future. If Josh does not regain the ability to walk again we will leave his left leg as it is now. We are due back in clinic again next Monday for another check-up.
As far as Stem Cell related issues things are going well. The immune function testing results are in with his immune system not functioning very well. Josh will be getting an infusion of 5% IVIG to help boost his immunity this Wednesday. With all the invasive procedures going on right now, catheratizing three times daily and the tissue break down on his heel the staff feels he could use this boost. We will be testing his immune system every month and infusing him upon the results if needed. His blood counts are good and his spirits are great.
This week Josh will get his IVIG infusion on Wednesday and at that time dad will meet with the director of the rehabilitation facility at South Bend Memorial Hospital to discuss his candidacy for their program. Whether this will be conducted as an in-patient or out-patient is not known at this time. We will also be meeting with his neurologist on Friday to review test results performed over the past few weeks as well as MRI films from Riley's Hospital. Arrangements are in process for in home school tutoring for this upcoming school year because Josh will definately be home for the first half of year with re-evaluation in December. We will inform everyone about all of these results next week.
In closing, Josh and his family spent this past weekend at Chuck's brothers on the lake. Josh caught the most fish with 10 blue gills and 1 large mouth bass, (18" in length). Jason has his first football game this Saturday in which Josh is anxiously awaiting to attend. And finally, tomorrow we are traveling to purchase a movie that the boys have been waiting to come out for six months..."Alladin and the King of Theives." Thanks to everyone for their continued thoughts and prayers through these troubled times.
Today marks Josh's 144th day post-transplant and this is another long journal entry. We will begin by catching everyone up with events from last week. Josh was released from the hospital on Thursday afternoon and arrived home early in the evening. We are administrating IV antibiotics here at home three times a day until next Monday. This antibiotic is working very well. His heel has improved tremendously with all of the swelling and redness gone. We are also back to catheterizing Josh three times a day because his bladder is not functioning to its full capacity. The muscle relaxant drug has been discontinued at this point until some bladder function returns. The thought process here is that we are inserting a foreign object three times a day with the potential of transferring germs to him. Although since Josh's release from the hospital his appetite has only marginally improved. We have offered at every meal time to prepare what ever he would like or even drive to pick something up for him. So far we have not succeeded. We hope that this improves over the next few days. He has neither thrown-up nor ran a fever since his release from the hospital and seems to be in very good spirits.
We traveled to Indy today for another check-up from both the Stem Cell unit and the orthopedic surgeons group. Josh's blood counts are within a reasonable range for this point in the game, although his hemoglobin has dropped to 8.4. We attribute this possibly to all of the blood draws last week. We hope to have some immune function results by the end of the week. Also in clinic today we discussed Josh's return to school and we are hopeful that this can be accomplished after the Christmas break. The main criteria for Josh to return to school is to have 30% T-cell function. Dad will be contacting the school this week to make arrangements for Josh to be taught at home. We also asked the doctors when Josh can begin attending church again. They told us he could if we go late, leave early and set near the aisle away from most of the people. We told them this would not be a problem as we are good traditional Catholics (ha, ha).
The orthopedic surgeons removed the long leg cast on Josh's left leg in consideration of Josh's sensitive skin. He had already developed two small pressure points near his ankle. His leg is in a soft wrap surrounded with ACE bandage like material and a leg splint. They figure this will give him good enough support to start laying down bone. They were very pleased with how his right heel appeared and explained procedures in case it ulcerates. They are hopeful by next week that Josh will have enough bone growth on the right tibia that the short cast can be removed. No X-rays were taken as it has only been five days so not a lot of changes have taken place.
Tomorrow Josh shall begin his pfrimmer deep muscle therapy with a trained massage therapist. This should help relax his muscles and hopefully prevent some of the spasms. Josh is looking forward to this therapy. On the lighter side of life, if there is such a thing anymore, we received a very nice package from the Leijon's in Stockholm, Sweden. The boys enjoyed T-shirts, key chains, postcards and a book, while mom and dad received a fine piece of crystal. Things have not gone well for Josh. It seems that what can happen has happened. It is hard as parents to watch your child go through such trying times but what has been equally difficult is not being able to protect our child, not only from a serious illness, but also careless accidents that should have been avoided. Hopefully we have learned from our ignorance and can prevent future setbacks.
It has been a while since we have updated this homepage and there have been several new developments to report. First of all, we received results of the DNA test and it was very good news. Josh's marrow is 100% donor marrow, which means it is identical to his brother Chaz's marrow. This is what we were hoping for. The rest of the news is not so good. Josh broke the femur in his left leg Saturday morning while doing exercises with the physical therapist here at home. Unfortunately this is another major setback and may affect his prospects for recovery from the paralysis. The rehabilitation process will be very slow as his broken bones will take several weeks to heal.
Josh also began running a fever Saturday, having a loss of appetite, and began having trouble keeping food down. On Monday he went to Riley's for his scheduled checkup and to have his left leg casted. The break is one inch above his knee so he has a full leg cast. At this time the doctor decided to take the old cast off his other leg to get a good look and clear X-ray. Along with a few other spots showing minor tissue breakdown, this revealed a black spot about the size of a quarter on the back of his heal. This tissue was deteriorating and was of concern to the doctors. The X-ray revealed the bone had shifted and was no longer aligned correctly, and it was not healing properly. They pumped him full of fluids, potassium and antibiotics. They also replaced the cast with another but cut out the heel so we could keep an eye on it and sent him home. Tuesday morning it had worsened and Josh returned to Riley's to be admitted. The spot now covers the back of Josh's heal and there were expectations for possible surgery on his foot.
This morning the spot had improved some. A bone scan was done showing no signs of bone deterioration even though the damage is more than just superficial. The doctors decided surgery was not essential at this point and will continue to treat this with IV antibiotics. The concern with doing surgery is that opening up the wound will expose it to potential germs and bacteria. Josh does not have the immune capacity to combat these. Although Josh's fever has come down, he still has no appetite and is still not able to keep anything down. We are not sure but this could be some kind of illness like the flu. Because of these problems the surgery to remove his central line has been cancelled. We are not sure how long he will need to be treated with IV antibiotics, but it is much easier on Josh with the central line in. The IV is simply hooked up to the lines and Josh does not have to be stuck with any needles. It also may mean he can be released sooner because the treatmenst can be given at home through the central line. We are hoping he can come home in the next couple of days.
The past two days have been very eventful as Joshua approaches day 125 tomorrow. We will start with our trip to Indy on Monday. Josh had another X-ray on his leg and it showed a small amount of bone engraftment beginning so the Orthopedic Surgeon removed the full leg cast and replaced it with a short leg cast,(this cast covers his leg from the knee down). When the long cast was removed Josh had three small areas on his ankle showing signs of tissue decomposition. One of them appeared to be worse than the other two. His ankle and foot area were wrapped in heavy foam before the new cast was put on to help protect from further tissue break down. Also Joshua has a large bruise covering the width of the back of his knee ascending to the mid thigh area as well as some small abrasions on this area of his leg. Today his thigh has swollen considerably and we will monitor this situation closely.
We finally, after many weeks of trying, saw the Neurological staff. We will not go into great detail about our meeting or discussion except to say that we are not pleased with the effort we seem to be getting from this group. Early this morning dad took the bull by the horns and contacted the Stem Cell Staff to ask if we may seek further assistance from a private neurological doctor located near Elkhart. They agreed that this may be a good idea. So at 9:45 am Joshua was seen by the local neurologist. We have scheduled four tests to be conducted over the next two weeks for help with the current evaluation and long term prognosis. Dad will do the leg work to gather up all the MRI films along with written reports concerning the paralysis to give to this neurologist. The neurologist thinks that he can help Josh by providing a sound neurological rehabilitation program to work in conjunction with the current physical therapy treatments. He also mentioned to dad that he most be more aggressive with Joshua's physical therapy. Dad admits that since Josh broke his leg he has been a little tentative with the physical therapy. Today was a wake up call to get dad's rear in gear and put his nose back to the grind working Josh harder.
As we stated early in our journal Josh will make his most progress within the first 6 to 9 months and the way mom and dad see it this short window is narrowing everyday. We believe it to be in the best interest of our son Joshua to get him started as soon as possible with neurological rehabilitation. This is the main factor in our decision to seek further assistance with Joshua's paralysis. We must remain focused on the objective at hand which is giving Josh every opportunity to regain use of his lower extremities.
We still do not have DNA results back at this time, but hope to have them yet this week. We received the written Cytogenetics report (Philadelphia Chromosome report) Monday and have a better grasp on the confusion with the relapse situation. It still is a little confusing about the way it was handled but never the less it worked out to Josh's advantage this time. Josh has been scheduled for central line removal on August 5. This cannot happen soon enough for Josh. Immune function testing is to begin with our next visit to the Stem Cell unit on Monday, July 29. As of Monday Josh's blood counts are still unstable. His white cell production has decreased to 3,100 and AGC has dropped to 1,860. He platelets are steady at 153,000 and his hematocrit and hemoglobin are steady. The reason for the drop in some of these counts is because for the first time since the onset of the paralysis Josh is steroid free. The steroids had made his new marrow work extremely hard in the production of new cells. His new marrow is very sensitive to changes at this time, but we hope that these will eventually level off.
For the lighter side of life dad and mom have to schedule ahead to get any computer time because the children seem to be playing with it all the time. The hot game now is chess which was given to the boys from one of Kim's co-workers, Mr. and Mrs. Randy Guyer a few weeks ago. Jason's baseball season is over and now we are off to football practices and then games. Josh is looking forward to a winning season.
Not a lot of news to report. Josh's visit to Riley's Monday was pretty uneventful. His blood counts continue to be good and the X-ray on his leg was about the same. It will probably take a couple more weeks to see the bone healing and that is when the doctor will replace the full leg cast with a half cast. We still don't have the DNA test results back and hope to get them at Josh's next visit on Monday.
Josh was invited to attend a fund-raiser for the Make-A-Wish Foundation on Sunday. There will be a golf outing at Juday Creek Golf Course and several Chicago Bears players will be there. Josh is very excited about it (almost as excited as dad!). The whole family is going and we are taking footballs for each of the boys to get autographs. It should be a great time!
This is a very confusing situation, but we will do our best to explain what happened this past weekend. It has been an emotional roller coaster not only for us but also for everyone that was contacted by us this weekend. At the same time we want to apologize for any distress that we may have caused you, but we promise it was nothing like what we experienced this past weekend (we are sure you could tell by our update).
After a very long, extremely emotional weekend, we traveled to Indianapolis today to discuss the course of action needed for Josh. Instead, we were given the best news we have ever received. Josh has not relapsed!!! It still seems like a dream, but we are all home and doing exceptionally well. What happened was that a test called a FISH was done on Josh's bone marrow. This is a highly sophisticated test to determine if there are any chromosomal abnormalities, specifically for Josh, the Philadelphia Chromosome. Results were read late Friday afternoon, and it did not look good. This is why we were called. We were told that the results indicated approximately 30% of the cells had the Philadelphia Chromosome and we would get the final count on Monday. Josh had been scheduled for surgery on Monday morning to have his central line removed, and the doctor had to cancel this based on the preliminary results of the FISH test. Rather than have day surgery call us, the doctor called to let us know the surgery was canceled and the reason was that the results of the test indicated Josh had relapsed. He also wanted us to come to Riley's prepared to have Chaz go into surgery to have a central line put in. What we did not realize was that the results were preliminary and there was a possibility the test could show a false positive.
That is exactly what happened. The test was completed today by looking at each individual cell in the sample of the bone marrow and counting all of the chromosomes. At 2:00 p.m., we were told that the chromosomes were not abnormal. Josh had not relapsed. Nobody was happier than Josh, although mom and dad weren't far behind. As we were told at the hospital, we dodged a major bullet.
There is no easy way to say this except to say that Josh has now relapsed in his bone marrow. Eaton's law has came full circle. This came as a shock to us as well when we received the dreaded phone call. We were told that the Philadelphia Chromosome test (the most sensitive test performed), came back positive with somewhere around 30% Philadelphia Chromosome cancer cells. We would like for everyone to keep in mind that Josh only had a 38% chance of survival with a bone marrow transplant. Going into the bone marrow transplant we were hopeful that God would spare our child for us, but now it seems to us he may have other plans. We have not given up hope, although each day it gets harder, we are just trying to be realistic and make the best decisions possible on Josh's behalf.
We do not have a lot of information to pass on, but this is what we know. Keep in mind this is purely speculation on our part and we will not have quality information until after the Monday consultation. Monday we are due at clinic at 9:30 for a consultation to become more informed and discuss the new road we will be traveling down, optional treatments and long term prognosis. Tentatively, our youngest son Chaz, who donated Josh's new bone marrow, is scheduled for surgery to have a pheresis line implanted. On Wednesday the pheresis staff will spin off Chaz's T-cells to be infused into Josh the following day. We think the reason for this is, hopefully, Chaz's T-cells will attack the Philadelphia Chromosome cells. The drawback is that the T-cells will, in all likelihood, attack Josh's body at the same time, commonly referred to as Graft vs. Host Disease (GVH). It has been our personal experience from our short time at Riley's that this can be as deadly as the cancer itself. We believe we will be in Indianapolis for most of the week performing these procedures.
Our biggest fear at this moment is wondering if we are battling a losing cause. Josh has already been through so much that this could possibly be a last ditch effort for saving our son from what we believe would be the worst kind of death to endure. From our point of view, if God has plans to take our son, we wish that it be swift and save him the pain and suffering from the slow deterioration of his body. Josh has expressed to us that he does not wish to spend a long period of time back in the hospital. Josh has also expressed interest in returning to Disney World one more time and seeing a live professional baseball game (his favorite team at this time is the Atlanta Braves, mainly because that seems to be who is on TV the most). We have made these and other things our highest priorities as far as giving Josh as quality of life as we possibly can. Sunday we are spending the day at the movie theater watching two movies back to back. Life is too short not to enjoy every minute.
Unfortunately we need to catch you up from our last update. Murphy's law has officially been changed to Eaton's law. Please note this and use it freely. Saturday night at 9:30 p.m. while doing his evening exercises Josh broke his right leg. As Josh finished his floor touching from a chair, we were moving him to the floor to begin exercising on all fours. While moving from the chair to the floor, we were supporting him and his hips and legs shifted to the left. His bottom fell upon his legs comprising his right lower leg. With the inability to feel sensation or to control muscle movement the brittleness of his bones and his weight caused his right lower leg to break. We consider this to be a complete accident but have learned that we need to be a little more careful. The leg was not casted at the local hospital because the doctors decided to have it done at Riley's on Monday. It is called a spiral break beginning three inches below the knee and ending three inches above the ankle.
Briefly the results from Monday's clinic visit are as follows. The break in the ankle by all likelihood was caused from the prolonged use of steroids and the lack of weight-bearing upon the bones. Which basically means that Josh's bones are decalcifying. The orthopedic surgeon chose to put Josh into a full leg cast until signs of bone engraftment are seen on the weekly X-ray. At that point they will put Josh into a half leg cast so we can continue therapy on the right leg from the knee up. The bone marrow aspiration showed no signs of cancer cells. The DNA and Philadelphia Chromosome testing will take up to 21 days. When we hear you will hear. We did not have a chance to see the neurological team because we spent so much time dealing with Josh's broken leg. This appoint has been rescheduled in three weeks. The Stem Cell doctors did speak with the neurological doctors and relayed the following information to us. The MRI showed significant improvement in the spinal myelin and no changes in the brain. The neurological team considers this to be fantastic news along with the news that we passed on about his progress. The paralysis has descended to somewhere around the hip area and he is involuntarily moving both legs a tremendous amount. Keep in mind when we say a tremendous amount that this is a relevant term. Considering a month ago Josh had no movement in either leg we are ecstatic with his progress and so are the Stem Cell doctors.
Monday Josh is scheduled for the surgical removal of his central line and another X-ray of his right leg. Since he has broken his right leg we will continue weekly visits instead of every three weeks. The main thing to keep in mind is at this point in time the Stem Cell doctors consider Josh to be cancer free. Josh will undergo no more bone marrow aspirations in his lifetime unless there is reason to suspect he has relapsed. Also keep in mind that with the rare form of leukemia he had Josh may never be considered cured, only clinically cured. And this may take several years to even get this classification. As parents we feel that the worst is over. All that is left for us to do is to keep Josh's muscles in the best condition that we can so that we may be able to walk again. He speaks continuously of playing soccer and baseball next year. With his determination and willpower who is to say that you won't see him on the fields having fun as all children should. This has been one of the hardest seven months of our lives and we consider ourselves fortunate as we know many families have battled their childhood cancers for several years. In the back of our mind every time that Josh gets a cold, a sniffle, a low grade fever, we will fear that he has relapsed. In time hopefully this fear will diminish as the memories of the 45 days of hell fade.
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.