I wish I could report better news but unfortunately Julia is still running fevers and feeling unwell. Since this is day 5 of fevers they have started a fungal workup and put Julia on an anti-fungal medication. Julia's blood work continues to be up and down, and on Thursday she required a blood transfusion.
On a better note her heart biopsy was good and her bone marrow showed that she is producing good cells (not cancer cells), but that those cells are being destroyed somewhere and by something. The tricky part is trying to figure out where and why? Unfortunately because these tests could not rule out relapse and since she continues to have stomach issues she will under go a biopsy of her stomach and bowels. She will also have one of the lymph nodes in her neck biopsied. The surgeons spoke to us on Friday and they will try and get her to the OR on Tuesday. The combined procedures will probably be approx. 3-4 hours. Doctors are hoping that with the tissue from the lymph node and gut they will be able to declare or rule out relapse.
On another sad note we were suppose to leave on Julia's "wish trip" to Disney tomorrow morning. Obviously given what's going on we had to cancel the trip. We are very disappointed but are confident that we will be able to reschedule when Julia is better.
This has been a very difficult few weeks. With Julia feeling unwell I am extremely nervous and anxious and that makes each day feel so long. I have only gotten to see the other kids once and I am missing them like crazy. I wish I could talk to all of you but unfortunately I can barely find the energy and words to talk to doctors. I will continue to update the blog as I can and will contact all of you soon. Please continue to keep Julia in your prayers, as this is all we can ask for right now.
Sincerely,
Nadia
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