Baby steps

The last few weeks have felt like we were walking on a thin sheet of ice, taking baby steps so as not to break through. Within 24 hours of getting released from All Children's we were readmitted to the local children's hospital, Ryan had a fever which cleared up after some Tylenol and a stressful restless overnight. Luckily we were sent home within 24 hours and have since been doing very well. He seems to have gotten over all of the viruses, having a compromised immune system makes the smallest cold for anyone else a major event for us. The donor has agreed to reschedule his date of donation so our new transplant date will be Thursday, May 9th. With the updated schedule Ryan will begin taking Palifermin on the 28th to help ward off the mouth sores that are very common with the type of chemo he will be receiving. He will be taking this for the three days prior to starting his treatment and then again after because the effects can linger for a while. The treatment will destroy his bone marrow and assist the donor's cells to grow. (engraft) Once Ryan's blood is verified to be 100% of the donors marrow, that will mean that we are cancer free. There will be three different chemo drugs they will be used over a week: Busulfan, Cyclophosphamide, then Melphalan. Once we complete his treatment we will still be far from out of the minefield, there will be many more proverbial land mines to look out for. Graft versus host disease (GVHD) is a very common occurrence where the donor's cells see the new host as a foreign body and attack it. Luckily, there are many preventative medications that will serve as a social lubricant for the cells.   There will be a big group of medications that will be given to help prevent and lessen the side effects of the chemo and the lingering effects. The hardest part as a parent is the waiting, I like to think of myself as a very patient person but this kind of waiting is making me think I should sign up for sainthood. With a list of side effects and possible complications as long as my arm to watch out for I am still oddly upbeat. In our journey I have found some solace in reading blogs of other parents of children with JMML and I feel fortunate to have the ability to read their experiences to be better prepared for our next steps. I know it gets old hearing this but thank you to everyone who has been here for us during this transition and process, just knowing that we have such a great support system helps a lot.