Friday, June 20th
Day 4
Camryn has begun to slowly feel the effects of the chemotherapy. Some nausea, but otherwise she is still doing fine. She is however, very concerned about the potential for diarrhea. Her concern is not about what you may believe it to be. The problem with diarrhea for Camryn, is that once she has it, she becomes confined to her hospital room and will no longer be able to roam the unit. Anything that may be a threat of spreading bacteria, shuts you down on this unit. The risks are real and can become dangerous to those whose immune systems have become compromised. That is Camy's fear, the fear of losing her freedom to leave her room. That time may be rapidly approaching as she begins a dosing regimen with multiple chemotherapy medications this weekend. We hope she has at least a couple more days of "freedom" left.
A personal note, if I may, regarding something upon which I was reflecting late this afternoon while with Camryn. One of the procedures involved with diagnosing GATA2 deficiency, is a bone marrow biopsy. The biopsy reveals abnormalities of the marrow consistent with GATA2 patients. Camryn has had three. The first biopsy was to diagnose, which confirmed the need for a transplant. The other two biopsies were to observe any changes over time in the marrow from the baseline biopsy. The biopsy is performed with a very large and long needle that penetrates the hip bone and extracts marrow and very small fragments of bone to be examined. Camryn was sedated through the procedure, but nonetheless was quite anxious prior to the surgery. She knew that afterwards, her recovery would include pain when walking or moving the leg. The day of Camryn's first biopsy, both Lee Ann and I were with her. We were in the surgery waiting area, preparing to be called back. As Camryn sat on my lap, she quietly asked questions about the procedure and the recovery; questions that we had previously discussed many times. I knew the questions were just a front for her anxiety and fear. Anxiety of the unknown, and fear that she might not "wake up" from her medically induced sleep. If there existed a parental guide as to how to handle this kind of situation, I needed it then. I did the only thing that I could think of, and that was to pull her close to me and hold her tightly on my lap. As we sat there quietly, deep in thought, I could feel the tension leave Camryn and her body began to relax as she gently patted my cheek. I knew then, that if anything should happen to Camryn down the road, this moment was the one to be captured in my memory; this moment was far to precious to allow it to slip away. I held onto her until Camy was called back into surgery.
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