Hemoglobin 9.3 - steady
Platelets 302k - very cool!
Weight 12.3 - no weight gain, I think he'll be on the petite side
Feeling - sometimes moaning and tired, sometimes full of fire
Thank you for your prayers. We spoke with the doctors earlier this week and feel comfortable with what we know. Here are the details about the mixed chimerism study that showed 60% lymphocytes:
- The immunosuppressors are causing the low number
- The preconditioning regimen we chose for David before transplant was less toxic but is known for delayed engraftment. I think we are seeing delayed engraftment with the blood-type issues (converting to B+), and the lymphocyte chimerism
- The test produces "noisy" "incomplete" results. The type of chimerism test they do is not accurate.
There is no need to be alarmed. One doctor said that 60% chimerism is considered "high." Since David does not have any lymphocyte abnormalities, it is possible for he and his donor's lymphocytes to live with mixed chimerism. David's underlying bleeding disorder is cured. Now we just wait and see if the rest of his body will recover. I keep reminding myself, "This is a long process!" We were told 1-year. I wish my boy was an exception. I want to throw the doctors for a loop by seeing 100% immune function before August.
Today he had a physical exam. Everything looks good. The meds are the same: Prenisolone 1.5ml/4.5mg/once day, plus all the other meds I mentioned a few days ago. Next week they will think about doing the Prednisolone every other day for the long-term. I'm not sure what long-term means, but let's hope we can get to the next stage without any rash!
Thankfully his foot x-ray came back normal. He jumped on the couch and has been limping for a few days. He also fell from his sister's bunk bed. I am so thankful he has platelets! The fall did not create any harm. This boy child of mine keeps me on my knees.
The back of my poor little girl's hands are so dry and irritated from all the hand washing she does. She does such an excellent job at washing her hands. She's doing b/c she loves David so much. We took her to the doctor b/c the backs of her hands have been itching, inflamed, and making her miserable at night. He told us to apply cortisone cream, Vaseline, and put gloves on at night. He told us to apply a cream during the day and recommended Eucerin Cream. We've tried different soaps, even one that is natural with tea tree oil. She is not having an allergic reaction b/c is she were the whole hand would be inflamed. Also, the inflammation comes at night, right before bed. Her hands do not bother her during the day. I think she will be ok in a few days. I feel so bad, but she needs to keep her hands clean.
1 comment:
Your baby girl and I are having the same problem, dry itch irritated hands. Aimee, I still rabidly wash my hands because of my fear of germs and GyasiI lotion immediately after washing them when I am at home, maybe that will help her. . I don't believe I'll ever stop worrying about his health. He is maintaining a 89/11 chimerism and is ALL BOY as well. My knees are ashy for staying on them in prayer. Keep the faith, God is listening.
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