MayRose was admitted to SunRise Pediatric Oncology on Monday night at 10:30 p.m. with what appears to be a virus. She is doing well today and we are hopeful that we might be discharged on Thursday.

MayRose surgically had her port removed today because it was too big for her small veins. Instead, a new broviach was placed. These devices provide a way for her to receive regular blood transfusions, and have her blood levles regularly checked without having to insert a needle everytime (careproviders can no longer access her veins with needles due to the massive number of times this was done in the past). MayRose is back home and doing well!

Just spoke with Dr. Vlachos from the DBA Registriy in NY. MayRose's blood test confirmed that she is RPS 19 positive. 25% of DBA patients are positive for a defect in the RPS 19 ribisone gene. Currently the DBA life expectancy is age 48 - solely because only 30% of the DBA patients in the registry, which was started only 15 years ago, are adults. This age will increase as the children in the registry grow into adults. There are DBA adults in the registry in their 60-70s who have managed their care through steroid usage. MayRose will begin steroids when she is 18 months. She has responded positively to steroids in the past, but we waited for her growth spurt to finish before restarting her on the steroids. 14% of the 600 people in the registry contracted cancer. Hopefuly MayRose will not be one of them. The other areas of complication is when steroids don't work and chronic transfusions are required. The iron buildup from these transfusions can be effectively managed with chelation therapy, but the teenagers who are noncompliant can die of iron overload. Finally, for those people who need bone marrow transplants because they don't respond to transfusions or steroids, there is a high risk of death. So far, however, MayRose has been responsive both to transfusions and steroids! Please keep her in your prayers.