Day +53 - Stamina...

Last night, we didn't sleep much at all. After speaking with Sam's primary transplant doc on Friday, she wanted to schedule a lower GI scope and biopsy of Sam's gut and intestinal tract today if her diarrhea did not significantly improve. This would entail "putting her under" again and at least a two day/one night stint in inpatient. On Friday, we were able to get a urine sample to rule out a urinary tract infection causing her intense pain when she urinated. It was not a simple task to get a "clean catch" from a toddler but luckily we did so successfully, and avoided having to catheter her. This didn't give us much information leading to what had been causing the intense pain for the last two days, so they think she may have passed a kidney stone... Ouch:( She also had a violent vomiting episode on Saturday that resulted in petechia all around her mouth and chin. This is a rash that typically happens when platelets are low. I was surprised because her platelets have been more stable, but this added to the nerves for today's appointment.

      As of this morning, I wasn't sure what the doc was going to want to do about the GI scope and biopsy. Luckily after her numbers came back from the lab, all three blood lines (hemoglobin, platelets, and ANC) looked stable and I explained that her "tummy issues" seemed to be slightly improved although not her "norm." I asked if it was reasonable to avoid the scope/biopsy at this time given things are improving slightly and assess throughout the week if things take a turn for the worse. She agreed to continue a 10 day cycle of her new antibiotic and take a close "wait and see" approach as far as her digestion issues go. Like all things have been, it's a delicate balance but the docs really try to be proactive because if her graft vs. host disease (which is what they now think the rash is most likely) moves to her gut/intestines, they want to be aggressive and try to treat it as early as possible to avoid it spreading to other organs. We totally agree and want to avoid this, but we are also all too aware of the toll each of these "procedures" takes on Sam.
   
      Since February 1st, Sam has had two bone marrow biopsies, one bone marrow aspirate, two skin biopsies, two PICC line insertions, one G tube placement and two replacement procedures due to infection/balloon burst, one heart ultrasound, an EKG, one stomach ultrasound, CT's of her chest/abdomen/pelvis, a chest x-ray, 26 platelet transfusions, and 13 red blood transfusions. This isn't even considering the countless swabs, dressing changes, meds/chemos, "samples", etc. etc. Even though the scope and biopsy procedure with a few days in the hospital pales in comparison to what Sam has been through, it is just hard to maintain the stamina sometimes. Especially as summer approaches and it's Kaeden's last week of school, we just long for a more "normal" existence. It's also harder to "distract" her and she has more of a "fight vs. flight" response now that she is stronger, older, and wiser as a 21 month old. My heart aches for the parents and kids who have to go through a second transplant or face a different disease after "beating" the first one. My mind races even thinking of this possibility. The future is exciting and scary all at the same time, but I guess that's the same for any parent:) Luckily today was a relatively "calm" day and I hope this week only gets better! Pushing lots of toast and bananas around here!

      On a side note, Kaeden went to the Dells this past weekend with Brandon and my Dad. He had a BLAST! It was his "summer vacation/overdue spring break trip" since Sam can't be in public/airplanes, travel too far from the hospital, play in sand/dirt... our other options are a bit more limited as a whole family this year. Luckily the "boys" had a ton of fun. Sam was asking where her "Kee Kee" was all weekend and was so excited watching at the window when they pulled up. We took a quick picture as they were unloading the car. The first one with all four of us in it for awhile! This is Kaeden's last week of school in Junior Kindergarten. Our hero really is growing up fast!