Update

Thank you to everyone for the well wishes following last week's biopsy. I've been having a really hard time this past week, which is why I haven't updated, but I'm feeling a bit better now that we have a plan going forward. 

So first, the actual biopsy procedure went just fine, very straight forward. Eric did have a platelet transfusion after the biopsy when we were at clinic last week. His platelets were a little low and we saw a weekend of sledding on one cm of snow/mostly frozen grass, and a lot of bruises, in his future. 

The results of the biopsy are a little confusing. Eric's marrow is showing 5-10% blast cells; those are the bad cancer cells. However, the chimerism (DNA) is showing that the donor cells are up to 23% from 13% on the previous biopsy. It is unusual to see the donor cells have a resurgence, instead of losing the graft which is what we expected to see. Obviously it is nice to see his donor cells putting up a fight against the MDS, but it is not expected that they will win in the long run; that just doesn't happen with MDS. 

At this time, the only treatment for MDS is a bone marrow transplant, but a bone marrow transplant is risky, especially a second one, and will make Eric very sick. Since he's outwardly so "well" right now, it is really hard to contemplate putting him through that. The Doctor has offered us a "bridge." It is a relatively new treatment and involves pairing the 5Aza that he has had previously, with an additional medication called Venetoclax. It is a 28 day course: 7 days of 5 Aza and Venetoclax, plus an additional 21 days of the Venetoclax. Eric will go into hospital for 7 days since the 5Aza is IV and also to monitor his reaction to the Venetoclax. Following the 28 day cycle, he will have another bone marrow biopsy to determine if the treatment has been effective. Effective would mean stability, and possibly even improvement of his current condition. If it works, we could do it for additional cycles. Even if it works, it is not a solution, only a bridge to a bone marrow transplant; however, it may allow us the opportunity to delay the transplant and the potential to improve his condition in advance of a transplant. The dr has to access the medication still, but is expecting that Eric will be in hospital by mid next week. Joel's birthday is in less than two weeks and we want to be home for that! 

Eric was back at clinic yesterday for a check up and had a red blood cell transfusion. Grandma Wendy is in town and came to keep us company. I told her that after the transfusion Eric would be running circles around the house. She was still surprised when Eric actually did start running laps around the center of the house - and timing himself! The red blood cells give him so much energy; it is so good and so exhausting for the rest of us! 

In the meantime, Eric has been absolutely loving the snow and sledding every opportunity he gets!