Josef’s Story

Josef is a precious, smiley, little blondie. He is now 8 years old and still sucks his thumb. He’s a child who always makes sure you’re o.k. and gives random hugs just to see you smile back at him. Josef has been diagnosed with a disease that affects 1 in a million people. In the beginning of 2007, Josef had 3 bouts of strep throat as well as a rare allergic reaction to the amoxicillin he took the 2nd time. (He broke out in target lesions (a bad rash) and had a fever for 3 days.) Every time we went to Chuck E. Cheese he became ill with either a very bad cold or the flu, so we learned to stay away. I began to notice increased bruising on his arms and legs. He also tired more easily and began losing his normal appetite. I figured he had finally stopped his growth spurt and was simply getting to be an older, rougher boy. I was wrong.

It began at the end of August 2007 when he had the 10 day fever of 103.5 that wouldn’t go completely away with Tylenol/Advil combo. He had NO other symptoms and that’s when we began the weekly/bi-weekly blood tests & doctor appointments. The fever continued and because no one believed me that he was sick, due to the Tylenol lowering his fever enough to make him “normal” when we went to the dr., I finally took him in sick. Because he began complaining of headaches (which he never had before) they performed an x-ray on his nasal cavity, thinking it might be his sinuses, but it wasn’t. We went to another doctor who ordered a mono test and it was off the charts in terms of positive. Even when his CBC counts were normal, they were on the low end.

At the end of September all his counts were so low that we were told to bring him straight to the Kaiser Zion hospital down in San Diego. That’s when the transfusions began. That weekend he received red blood cells and platelets. He celebrated his 4th birthday in the hospital after various tests had been performed. His bone marrow had no abnormal cells present, just a lack of cells in general. He wasn’t eating very much, and began complaining of tummy aches when his counts were low as well as headaches. He would begin to break out in bruises/peticaie all over, sometimes for no reason, and a little trauma would create hematomas. With each transfusion, he’d be back to his self for a few days and then drop back to the lethargic, whiney, sleepy, not hungry boy again. Josef had blood tests that were positive for Epstein Bar and Citomegalo virus (CMV). The doctors hoped that it was just a “viral pull down” as they had already ruled out leukemia (which is said to be easier to treat then what Josef has.)

Finally, after months of waiting & hoping, Josef was diagnosed with idiopathic aplastic anemia. To date, in the last 8 months, he’s had about 23 platelet transfusions & 8 red blood cell transfusions. We tried steroids twice in 5 day bouts, with no change except in his white cell count a little. After numerous times in the hospital attempting to put in an IV and having his veins burst due to the low platelets, we decided to graduate to a more secure mode; he had surgery to put in a port for his transfusions. Around this time we began seeing a naturopath/chiropractic on a weekly basis. She began adjusting Josef every week, put him on a strict gluten-free, low sugar, organic diet, and got him on a herb/supplement regimen. We tried to treat his body naturally but ran short on time due to the iron overload concern. A couple months later we finally had to move ahead with a treatment plan. In April 2008 we underwent an immunosuppresive therapy of ATG, cyclosporin & prednisone (chemotherapy). While Josef had some serious reactions, he braved the storm and has been a trooper about taking his medicines & supplements. He currently takes around 30 pills a day as well as 3 liquids. Once again we are having to wait and see if this treatment worked to help Josef get better. We won’t know for another couple months. He shows some signs of possible improvement, but we can’t tell for sure yet. We can only hope and pray as the next form of treatment will more than likely be a bone marrow transplant which carries many risks. Currently we go to the Kaiser clinic 2x a week to see Dr. Lammers and see Dr. Weeks 1x a week. We get a “pokey” every time we go to the clinic and he never cries. We need platelet transfusions about every week and red blood cell transfusions about every 3 weeks. Josef has a big brother that’s 8 and a baby sister that’s 16 months. I hope that sharing our story will encourage others struggling with AA. If you are touched by Josef’s story, please donate blood, register with the bone marrow registry or just help our family out with unforeseen expenses. We can use all the support we can get right now. God bless & thank-you.

UPDATE Nov. 16, 2008: Josef had his 5th birthday and we received the best present ever! He began to make red blood cells on his own! After his ATG regimen in April 2008, we waited patiently to see if he’d respond. At first, it seemed like nothing was going to happen. Then, his worst blood line, platelets, began creating! Slowly we weaned off of platelet transfusions. His white cells soon followed! It had been almost 6 months and still his red cells had not produced. Dr. Weeks began to stimulate his spleen as a last resort to make baby red blood cells. Finally, in October, they rose a smidgeon. That smidgeon turned into consistent points. Now Josef is completely transfusion independent, which was quite a shock to everyone working his case! We thought he’d be a partial responder. We’re all very happy and continue to watch, hope & pray as we wean off of the cyclosporin (an immunosuppressive drug.) So far, Josef shows signs of becoming a “normal” little boy again. While his platelets hover around the low-normal range, he is able to heal his own bruises & cuts. His whites bounce around constantly, but one thing we’ve noticed is that when they need to fight an illness, they are up to the task! His reds are still in the anemic range, however we are moving toward higher numbers. We have finally gone to every 3 week appts. for the first time in one year! Josef is on exjade for iron chelation due to having an astrinomical amount of stored iron from the transfusions. Josef is now wanting to reach out and help the other sick kids in our hospital; we celebrated his birthday by GIVING out presents in his Kaiser pediatric ward. He also sang songs and made the other kids smile with his infectious happiness! His nurses were happy to see him but happier to see he’s doing so well he doesn’t need them anymore! Josef still intends on growing up to be “Dr. Jojo” when he’s older and take care of sick kids like himself. Please feel free to ask for more details about Josef’s aplastic anemia case. I’m willing to share our story with you. Thanks again & God bless.

UPDATE June 18, 2009: Josef is in complete REMISSION! Josef is off of all medications, including exjade, and continues on his daily supplements. We have graduated to going to Dr. Lammers 1x a month as well as seeing Dr. Weeks 1x a month! This has really saved us on gas money, as I’m sure you can imagine. Now that Josef is mostly healthy, we have moved on to dealing with other issues he has: speech delay, toe walking & attention issues. He recently finished his 6 month bout of speech preschool in May & after attending a 1 month summer school program will be moving up to a special day class for Kindergarten next Fall! We’ve added seeing a physical therapist every other week as well as a speech pathologist monthly, outside of the services he receives through the school system. Josef’s red cell line is still not grounded in the “normal” numbers but hovers around there sometimes improving. He’s maintained a consistent normal-low count for white cells & platelets. He still bruises easily, but I’m learning that it’s nothing to worry about. He’s been extremely healthy boucing back quickly from the few illnesses he’s had! We are still eating the healthy diet prescribed by Dr. Weeks. Josef still takes a daily 1 hour nap. We look forward to next month as Josef is scheduled to have his medi-port surgically removed! This is a big step to “feeling” like a normal kid and he can’t wait to see his nurses in the Pediatric ward again!

-Heather Wood :o)

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