Judah was diagnosed with a rare blood disorder at 2 months.
Judah (age 4.5) was born with a rare blood disorder called Severe Congenital Neutropenia (SCN). Basically, his body didn’t create neutrophils on its own (a white blood cell that fights infection). So, he was very susceptible to sickness and when he got sick his body couldn’t fight the infection and it would progressively get worse if not treated with medicine. When he was diagnosed with this at around 2 months old the Dr. informed us that there was a chance he could develop cancer and therefore he would need to undergo an annual bone marrow biopsy. Shortly after his 2nd birthday (2016) he underwent his 2nd annual biopsy and we got the heartbreaking news that his body was developing cancer and he would require a bone marrow transplant. As we began the process of preparing for this transplant, further tests were done and it was discovered that his body actually had 2 forms of Leukemia (ALL and AML). It’s very rare to develop both of these. At the time there were only around 12 active cases in the world. And Judah is the first ever known patient with SCN to develop both of these cancers at the same time. His transplant Dr. said “Judah isn’t just 1 in a million, he’s 1 in a zillion.” Therefore, we spent 2 months in the Children’s Hospital in Columbia, SC (our hometown) where he underwent chemo to address one of the cancers. Once that cancer was in remission we moved to Charleston and he underwent further chemo and irradiation to address the 2nd type of cancer. After that was subdued enough, he received his transplant in Oct. 2016. Initially things went well but he got sick and had to spend 2 weeks in the PICU. It was pretty bad and several of the Drs began telling us we might need to have the talk because they weren’t sure he would make it. But God was gracious and sustained him and eventually he got better and transitioned out of the PICU. After about 40 days post-transplant things were looking good and Judah was discharged. It was the week before Thanksgiving. We then had to live near Charleston for the next 2 months because the first 100 days are critical and he needs to be close to the hospital for regular labs and in case of an emergency. In late January of 2017 labs looked good and we got the clear to return home! Since then things have went well. Judah has grown and thrived and if you met him you would see a wild rambunctious 4 year old little boy and never know what he’s dealt with. During that next year he had to go down to MUSC several times for labs, which always looked good, and in Oct of 2017 he had his 1 year post-transplant bone marrow biopsy. The results came back from that and they were perfect. For the next year he had to go to MUSC quarterly for labs, which again always looked great. This Oct. (2018) we went down for his 2-year post-transplant biopsy. Going in to this, because all his previous labs and last year’s biopsy looked good, we were expecting this biopsy to go well. If this went well then he would no longer need to undergo biopsies, and he would need to do labs twice a year for the next 3 years. We were very hopeful and excited about dropping the biopsies. The initial results looked good. Cancer came back negative. However, when his genetic results came back we discovered that he only had 91% donor cells, and the other 9%, which his body was creating, had abnormalities. And these mutated cells, while not having cancer, have the markings that they are mutating and evolving towards cancer, and he would require a 2nd transplant. We were devastated when we got this call. His Dr. was honest with us and said the type of cancer that it seems to be trending towards is a difficult form to treat. As you can imagine, we are pretty heartbroken over this news. At the time of us writing this we learned this news 2 days ago and these last 2 days have been a blur, filled with lots of tears, and a constant cloud hanging over us. My wife and I are Christians, and our faith in Jesus is vital. While we certainly are fearful and even have moments of doubt and anger, even in the midst of this God has been gently reminding us that He is good and in control. One of the ways He did that 2 years ago and is doing it again is through the overwhelming generosity and support of others that He’s allowed us to experience. Such as through Courageous Kidz. In 2016 we had to spend Christmas in a stranger’s home, in a city not our own, and our son was in the thick of recovery. Of course with medical bills, constantly eating out or in the cafeteria, and me commuting each week between Columbia and Charleston because of work, we were strapped financially. So it was such a treat to be able to present them with all the amazing presents that generous donors provided through Courageous Kidz. But here we find ourselves in 2018 back where we were 2 years ago. The Dr. wants to move fairly quickly on this next transplant, so I wouldn’t be surprised if this time around we’re spending Christmas in the hospital. So once again, it’ll be such a joy to be able to shower our kids with presents to help bring them some happiness in the midst of all this difficulty. We are so appreciative and thankful for Courageous Kidz and their generous and amazing donors!