A Day at a Time

Well Friday was pretty uneventful. Miss Dani was sick early on at the ERT. That was the first time she got sick but it didn't seem to effect her too much. I think that might of been the first time she had solids before therapy and maybe it was to much for her stomach to handle. So from now on it will be formula only for breakfast on Fridays.

We talked to the BMT Coordinator to get the schedule and what to expect once she finds a match. There are a few test that she can do now (Hearing, Eyes, and Developmental). Those will be scheduled in the next couple months. She said an average for when the search begins and when a match is found is three months. 30 days before the actual transplant there will be 2 days of non stop test that they have to do to check everything (kind of like a physical). 21 days before transplant she will go into the hospital for 4 days for her first chemo treatment. She will then come hom3 until 8 days pretransplant. They refer to this as -8 days and that is when the hard chemo will begin. She will receive chemo for 6 days and rest for 2 then she will receive her new donor cells. That will be 0 day transplant. She will stay in the hospital hopefully only 6-8 weeks. They will do a check of the donor cells on day 30 to see if everything is going well and then again at 100 days. The next mile stone will be a year post transplant. That is the mile stone I most look forward too. And then birthdays after that.

Please keep prayers going to find a match quickly.

I went around to businesses today to pass out flyers for the July 8th fundraiser. Everyone was really nice and I did not receive a no from anyone. I never thought that I would have to ask other for help as much as I have had to in the last few months. But I will do whatever it takes to make sure Dani and the boys are taken care of . You all do not realize how wonderful you all are for doing all you have done. I am so not good at words but it is a huge relief to know there are so many people out there ready to help when you really need it.