Luke here. Things are going okay. Sunday we had a pretty good day. We went for a short hike in the morning. We have been doing this and the last couple of times Nathan has worn out quickly. This time we started with the kids both in backpacks so we could get a good, short hike in before turning them loose to stomp around and get tired. It worked well and we had a good time.
Nathan went in for counts yesterday morning and everyone expected him to need red blood. The cutoff for transufsion is a hemoglobin reading of 8. He was transfused last Thursday at 7.2. Friday he was only at 8.something which landed us back at the hospital for transfusion on Saturday at which time he was at 6.4. At that rate there was no way either we or the doctors thought he would hold the count enough to avoid Monday transfusion. Yesterday he was at 9.9! His platelets are little low, but we should hold him off until tomorrow for a transfusion on those, so he got most of the day off yesterday with no planned visits today. His white blood cells are still extremely low, but were up slightly so he may be on the rebound.
We are getting tests scheduled now. In the next week or so he will likely have a CT scan of his primary tumor, chest x-rays, an MIBG scan (a nuclear medicine test that picks up NB involvement throughout the whole body), and likely a hearing test because if we have to do additional chemo he will likely get the meds that can cause hearing damage. After that we can meet with surgeons to determine if we can move forward with surgery and get an idea of where he stands as far as residual disease goes so we can start planning for transplant or decide to do additional chemo.
He is hanging in really well and continues to be a brave, strong little guy.
This recent bout with counts has reminded me once again how we could not treat Nathan's disease without the aid of blood products. Wherever you live there are people battling disease that could not survive without the aid of donated blood. Please take the time to give at your local blood bank, corporate blood drive, etc and know that you are helping someone like Nathan battle this or similar horrible conditions.
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