Daley Ponderings

The only known curative therapy for JMML is a bone marrow transplant, so we will be going down to the Boston Children's Hospital/Dana-Farber Cancer Institute. Their team is one of the leading cancer centers for treating JMML. We had our first visit on December 12, and are still processing what we learned. We have begun the process of getting everyone in the family tested as possible donors. When all is set for Grace’s transplant, Grace, Jon, and I will temporarily relocate to Boston.

The whole family got HLA typing tests and it turns out Faith is a perfect match (and Jon turns out to be an almost perfect match, which is quite interesting genetically.) We all got COVID over Christmas, so that canceled Christmas plans with the extended family and delayed Grace’s transplant process. (After a horrible day where communication lines got crossed and Jon drove Grace down to Boston only to have to turn right back again because her appointments were all canceled.)

Because of the delay, Grace got another round of azacytidine. Also, remdesivir for the COVID symptoms. Jon had to push to delay the aza a few days to avoid reducing her immune system while she was sick, but they did eventually listen to him. This time, he and Grace stayed up in a hotel near the hospital so he wouldn’t have to drive back and forth every day. Grace did great the first three days. They came home Sunday night and it was so nice to be together as a family again. Monday afternoon, they went back up and then they stayed at David’s House.

Grace and I (Jon) had a great time together for the most part - she did throw some unconsolable fits a few times so that was hard, both trying to keep her quieter to not disturb the other guests and also to figure out what she wanted - in many cases, I think she didn't really know, and the best solution seemed to be to fall asleep.

One sort of humorous note is that for a regular kid, when they are crying uncontrollably, they can't ask for anything at the same time, but Grace really loves sign language and has learned more than any of our other children.  And while she is screaming she can still sign at the same time, and I think it has been harder for her to learn than our other children that she can't get what she wants while yelling, because I think that is somewhat obvious to a child who isn't able to communicate while screaming.

Tuesday morning, Grace was quite sad – I (Heather) think she didn’t like the idea of being away again. So I went up Wednesday to take her to her appointment while Jon stayed at David’s House to get some work done.

I had lunch with her at David’s House and then played and talked in the room for a while. Then she was happy to have Daddy take her to the play room and say goodbye to me.  Though, unfortunately, when they got down to the playroom, there were others already there, so they didn't join them since we were getting over COVID.  We had some miscommunication with the David's House staff, as they don't have a COVID policy published, and had given us some different information and forgot to ask us the screening questions when we arrived, so we were allowed to stay, but were told to isolate and they probably didn't really want us there, but didn't want to kick us out either.

Before Heather left, she noticed Grace was developing mucositis. She was so uncomfortable and it was so sad. They gave us an ointment and sent a prescription to the pharmacy. It did help by the next day which was quite a relief, to us and to her.  We came home on Thursday and she has been much better since.