Day +96 Somehow I must have added an extra day, but officially, today is day 96. Anyway, today is pajama day for the Minneapolis Andrews...Julian anyway. Julian was up dark and early for a biopsy of his lower GI in the peds OR. At our day 100-(ish) appointment, his doctor felt that this would be a good idea to rule out GVHD with all of the nausea and diarrhea he has had. He does have some bleeding and ulceration, but the tests for GVHD were negative. Therefore, his doctor feels that this is all reflective of a healing gut. I am glad that it is not GVHD, but disappointed that he will have to just deal with this until it heals on its own. Because of his early morning, I let Julian wear his pajamas all day, which I never do. I think he had about a week in the hospital when he was too miserable for us to even attempt to make him get dressed, but aside from that, he is always up and dressed. The good news (aside from his 100% engraftment and NED) is that he will be able to go home next week! Julian will also be able to begin weaning off of his anti-rejection med, giving his new immune system a chance to work. This will be done slowly in an attempt to avoid stimulating any GVHD in the process, meaning it will take about 8-10 weeks. Initially, we are prepared for twice weekly lab appointments to monitor electrolytes primarily, since he is still on TPN. I am really hoping that perhaps they will consider weaning that a bit as well, because his appetite is still suffering. He will have follow up bone marrow biopsies at 6 months, 12 months, and 2 years. Please continue to pray for his appetite to improve, for his digestive system to heal, and for him to remain 100% donor cells and disease free! We are preparing to end one chapter of Julians Journey. We are so incredibly grateful to all of you for your prayers, for all of the amazing generosity of family, friends, and strangers, and especially for the life-saving cord blood---gifts from two complete strangers! The Andrews
Posted on: Wed, 21 Jan 2015 22:31:36 +0000
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