Karlita received the best birthday present ever this year, Ezra officially engrafted! To engraft, his ANC levels needed to be above 500 for 3 days in a row, this started on December 10, 11 and 12, so his engraftment day is considered December 10th. This is a huge step and is such a blessing and relief to know that his new stem cells are growing and beginning the process of making healthy cells! Tomorrow he will complete the final step in the transplant, which is the a spinal tap in which they will insert DUOC cells that will go straight to his brain. The idea for this is that those will get there faster and start protecting his myelin, while we wait for the rest of the cells to start fully working (which won’t be for about a year after transplant).
Although he is been extra fussy due to the bone pain, Ezra has been quite the trooper. All of the doctors are extremely pleased with how well he has done and if he continues to do so, they are talking about discharging us early to the Ronald McDonald house in Durham, possibly as early as late next week. It will be great to be out of the hospital and in a home setting. This specific house has a swing that is made up of suites (1 bedroom apartment style) specifically for families of children with transplants. The doctors are starting to wean him off of medications in preparation for this. On Thursday, we will start learning how to draw Ezra’s blood from his central line and administer medications through his g-tube, as we will be doing all of that while we are at the Ronald McDonald house. We will still remain in Durham for the next 2-3 months while Ezra receives outpatient treatment. He will go to what is called “clinic” starting at 5 days a week and will slowly decrease those days.
We so appreciate all of the love and prayers Ezra continues to receive. He truly has an army behind him. Please continue to pray for his pain management, his spinal tap tomorrow and his recovery. We hope that next time we sit down an update it’s not from a hospital chair!
His signature pose
Ezra and his Daddy just hanging out
Making kissy faces