Today we went to the doctor knowing that the rash could be GVHD but the hopes that maybe it was just nothing seems far fetched. Tomorrow we go in at 9:00am so I can hold my baby boy in my arms why they take a piece of his skin. At times I wonder how much more I can take and what Liam must be feeling. The pain never seems to end along with the struggle. I find my self taking deep breaths all day long and trying to keep myself calm. Everyday I wake up I hope that Liam will be o.k.. It seems just as you get your feet under you yet another unknown path comes along. I try to just walk without struggle but that’s not possible. If I could just take Liam’s place I would. It’s the hardest thing for a mother to have to sit back and know a bandage, kiss, hug, or time will not heel this. I know this is a bump in this very long road but I hope the end is felled with happiness and relief.
Liam’s labs look good and he is still gaining weight. All good things to focus on. It is a struggle to keep your chin up. But what else can I do.
Thank you for all the live and support. I don’t know what we would do without it.
For parents going through a BMT Liam’s rash started on his forehead it was red and dry. It looked like eczema but then it started to peel like a sun burn would. Then it spread to his back it came in patches on Liam. Now it is moving to his arms and legs. You can also see little red spots by it. It does feel rough to the touch and very dry. Any rash should be followed up by a physician and most likely should have a skin biopsy done. If it is GVHD they should start the child on topical steroids and check for GVHD in other parts of the body.
Kristy’s FB comment: Kristina Smith GVHD is were Liam’s and Hunter’s cells are fighting it out. It’s like a war going on inside Liam’s body. It starts with a rash and can go to other places in his body.