Six months post BMT

This has been a trying week for me. Liam had his appointment last Tuesday and he had a rash again they looked it over and thought it was the same rash he had before. Which is good but a BMT parent is always wondering what it could become. You never get any answer really except for wait and watch to see what happens. They also discussed removing his Hickman which is amazing but still you wonder if he will need it again. They were supposed to check his chimerism’s (graft) at that appointment but instead told me that Seattle said no and that Liam would have to wait until Jan. To get checked that did not settle well with me. So the next day I called Seattle and they said that they weren’t going to check Liam again until May. I was so upset I said I want to talk to the doctor I am not comfortable with decision. I was freaking out these children can loose there graft due to a milder BMT so what does waiting help anything? The nurse called me back and said they would be checking it at his next appointment I was very relieved and thankful that they changed the plan. Now I have a another worry what if he is loosing his graft? I sure hope not but it is reality. Liam’s graft has been going down slowly and I’m hoping that going down on the tacro will help his graft go up.
Liam threw up on Friday and that about sent me over the edge. When he flared the second time with HLH that is how it all started. He has not thrown up again but the worry is still there. So the graft testing will tell us if there is something to be worried about. The reality is that parents with life threatening illnesses are always on the edge of are seats or sanity if you will. I think my child has been through so much in his short little life and I just hope that we can move forward now. It’s the hardest thing to watch your child go through and not be able to fix it. You never feel a since of security. But I have to keep faith that my little warrior will beat this.

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