Hello everyone, we missed yesterdays update because we picked Disa up💥😁🎉 The little sisters were so excited to play again they had a rather late night!
Ada is doing ok, we were back in hospital Sunday morning to get two little catheters (called Insuflonts) put in, one in each thigh because she will have daily injections for 10 days to boost her bone marrow function. The Insuflonts mean she doesn’t have the pain of a needle prick every day, but the injection fluid seems to be stingy and she gets bone pain from the way it works. We have a good pain medication protocol tailored for her by the wonderful anaesthetists on the pain team, so its managed well but does mean the afternoons are spent doing nothing much other than cuddling and comforting. Ada is still doing well otherwise and we and her medical teams are happy for her to be home. She spent her morning furniture surfing and getting into all the cupboards. She also had a visit from her favourite CCF support worker Georgina, who gave her a special courage bead as she now has over 100 beads already😯 Apparently quite the achievement in such a short time🎉
The next couple of weeks are going to be big for us. After boosting her bone marrow function Ada will have her stem cell harvest. No specific date yet as it depends on when her blood counts are back up. Totally not as horrific as it sounds, it’s actually really amazing what modern medicine has accomplished!
A machine will be hooked up to Ada’s Hickman double line and take blood out from one line, filter out the stem cells, and put it back in the other line. The hardest part is going to be keeping her entertained on the bed for the whole day😬 There are some rare complications that can occur but we are already working with the medical teams to have plans in place. After Ada’s stem cell harvest, she will begin round 3 of chemo, which will be a special immunology therapy round as part of her clinical trial. Because its a high risk and experimental therapy she and I will be in the hospital for that week, and quite possibly a bit afterwards.
That is probably the time we will draw on everybody for support a bit more, for Tim and Disa at home and for me to have some little breaks at the hospital. So think of this time as the gentle bend in the roller coaster, stop and admire the scenic views with us, catch your breath and then we will all start the next climb in better spirits💜🌻🎢