Sickle Cell Free: Not FREE
The road to freedom from Sickle Cell is certainly not free but I am blessed to say that it is attainable!
Craig Jr. was born with Hemoglobin SC and is 13 years old. He has suffered multiple crises throughout his life. He is number 3 of 6 children. The only one born with Sickle Cell. We found out about the possibility of a Bone Marrow Transplant for sickle cell during a hospital stay back in September of 2015. We immediately tested everyone in the family. We found out the results in November – one match. His younger sister Sophia.
Craig began preconditioning on April 6, 2016 and received his cells from his 100% match sister on May 4, 2016. We moved into the Ronald McDonald house on April 6, 2016 and was hospitalized on April 25 2016 to begin the chemotherapy conditioning.
The effects of chemotherapy on his body were absolutely frightening. (a bad crises x3) It included the typical loss of appetite, hair loss and vomiting. In addition, he experienced severe hives and a couple of lesions that formed on his bottom that required emergency biopsy when he had no T-cells. But God!!!!
Craig says the worst was the hallucinations. The room and clouds were spinning, he heard music only he could hear and per Craig Jr. the scariest was seeing eyes in his hands, dirt moving and faces on his arms. It took a while but the hallucinations seemed to have been caused by a reaction to Ativan.
He was hospitalized four times after being released early on day 33. Once released to the Ronald McDonald House he received home infusions for a month and a half and a cocktail of 25 oral meds taken throughout the day. He was hospitalized three additional times. A result of GI host vs graft disease that would come and go and sometimes become re activated by a virus obtained during our stay in Seattle.
Presently it is day T+191. Meaning, 191 days’ post bone marrow transplant. We have been home now (in Poulsbo – not living at the Ronald McDonald House) for a month and a half. Craig’s journey has been an up and down one. However, unlike fighting Sickle Cell there is a plan for treatment and we get to watch him progressively get better each day.
He currently sees his hematologist once a week. In addition, he has physical therapy to regain his strength. Prior to transplant Craig’s SC had progressed. He often had to use a wheel chair as he was in constant pain that would get worse, sometimes spiral out of control from simply walking. But all that is over now! He is Sickle Cell Free with only 5% of his cells carrying the trait!!!! Here is the difference;
He can go outside without a coat. He can swim in any temperature. He is praying for snow as he will get a chance to play in it safely for the first time. Although he is working on regaining his strength and stamina, it is coming back. He can run again! Most importantly, the threat of acute chest, stroke and premature death is no longer a fear!
Currently he has weekly visits to monitor medications and organ function. He is still on prednisone and immune suppressant drugs. They plan to stop the Prednisone in two weeks and the immune suppressant in a month or so.
As long as he is on immune suppressant drugs, his immune system is at extreme risk for infection which triggers host vs graph disease. So, we keep him away from huge crowds and sick people. (Often his siblings!) Once the immune suppressant drugs stop, he can go back to school! Craig Jr has been unable to go to school since February 2016 and can’t wait to go back hopefully this spring!
This has been a financial nightmare for our family. Recovering from the loss of income caused by my inability to work seems impossible. I have begun to look for work in anticipation of his return to school. Nevertheless, we would do this all over again. I only wish I would have done it sooner.
Again, no more opioids, no more pain, the procedure has worked and is holding! Thank you all for your prayers and support. I am encouraged as I hear the process is even getting better with less risk – no and or less chemotherapy and done now with only a partial match – (mom or dad!) God is Good!!!! Should you have any questions as you consider this for yourself or child feel free to reach out!
God Is Good!!!