Our hearts are heavy... Today we were headed to ALL Childrens in St.Pete to start Chases transplant testing when we got a call from our home Dr with the results from his bone marrow test they did yesterday. It shows that his disease has progressed even with the new drug, the previous test was 0.7% and now, after the drug, its at 11%.... That means even with aggressive treatment it is growing & he did not respond at all to the last round of chemo. After the call we proceeded to meet with the transplant Dr to talk about options. Dr Petrovic gave us 2 options for chemo to try in hopes of knocking his counts down to nothing (zero) then quickly moving to transplant without recovering but it is very toxic & risky. Only one of those options have been used for T-Cell Leukemia and it was only used with 3-4 children. There are a few other highly experimental methods we have read about and Dr. Petrovic was contacting those docs today. We are waiting for responses from them (St.Judes, Memorial Sloan-Kettering, and MD Anderson) to get feedback on any possible treatments they may have to get him to a point where he can receive the Transplant. We have only a day or 2 to decide what treatment to start and may have to leave the state. We have a consult with our docs tomorrow morning. Sadly Chase is now considered Refractory which means his disease does not respond to treatment.
Posted on: Wed, 04 Dec 2013 23:36:30 +0000