February 27, 2025
We were able to come home yesterday afternoon! It’s been a bit of a whirlwind and I think somewhat overwhelming for all of us, but we are thankful to have everyone under one roof for now. Oliver, Liam, and Maddie were all excited to see each other.
We are administering all meds from home, which will be a bit of a learning curve for me (Jessica) and will take a little time to get used to. I’m going to add chemo nurse/pharmacist to my resume 😉
We will have five more days of the oral chemo at home, and then we will go to clinic once or twice a week for bloodwork until his white counts go up enough that he can have a bone marrow biopsy. This will tell us if this chemo round was successful or not. We will definitely be doing at least one additional round of chemo prior to any stem cell transplant, but that will mean we should just go back to the hospital for a week or two and do the other weeks at home with the oral chemo. We aren’t sure when we will start the next round of chemo as it will be dependent on his counts.
Our goal is to get the cancer counts low enough so that we can do a bone marrow / stem cell transplant. Siblings generally have a 25% chance of being a match, but our kids have had cheek swabs and are not matches for Oliver. Because of this, we had to check the national registry for a match for Oliver. He has only one 10/10 match (they check 10 alleles and the more that match, the better). We are hopeful because the donor has renewed their donor status and is young. There are also several 9/10 matches, but obviously a 10/10 match would be best.
Will you pray that this donor would be willing to get bloodwork to confirm the match and then come here to donate bone marrow if Oliver progresses to that point? We are not allowed to contact the donor or send a picture or anything until after a year and they are a live donor, meaning they will come to our hospital. The agency should be contacting them in the next day or so.
If you are like me and haven’t registered to be part of the national marrow donor program, would you consider joining?
Information here: https://tinyurl.com/52xmp982
