So, things just got worse as the day moved on.
Last week I spoke to the secretary of the Neuroblastoma team and she told me the scans would be Monday and Tuesday and the Rituximab would be Wednesday. This is how today played out:
1. Scan #1 was late, because the hospital did not have the CT contrast ready when they said they would.
2. They added another bone marrow draw (painful) for tomorrow, even though Ally had one the last time we were there.
3. They drew another HAMA level today. Reason: they want to check one more time to see if her level dropped. Thus....they wanted to wait for results (which come in very late Tuesday night, thus doctors do not know results until Wednesday morning) before doing the rituximab, just in case her levels dropped. Which means.....Rituximab on THURSDAY!!! AHHHHHHH!
4. They have now changed the entire rituximab schedule. It was supposed to be Wed (as the lady on the phone told me last week), and then the following 2 Wednesdays at Dartmouth. Now, they changed it to Rituximab on Thursday and then 15 days later another dose, then the following day (day 16) a low dose of chemo....chemo? Really chemo? Yes, chemo.... Anyway Day 15 is a Friday and Day 16 is a Saturday...they don't do chemo on Sat, unless you are inpatient. Plus, they told us Rituximab would be WEDNESDAY, not Thursday. They changed the whole schedule without telling us. (We only brought supplies to stay through Wednesday - meds, clothes, nighttime diapers, etc.)
5. Magical Daddy made people look into the whole situation, brought up that Day 16 would be a Saturday and that we were told Rituximab would be on Wednesday. THEY SWITCHED IT BACK!!!!! Yeah super Daddy!
6. Ally was supposed to get an MIBG injection at 2:00, When I talked to Daddy at 3:30, they were still waiting.
Anyway....that is all just schedule change, and we (Daddy, not so much me, because it gave me a migraine and my shoulders are all tensed up) can handle a schedule change...and based on today, it is bound to happen again before they get out of New York.
We still need a clear scan tomorrow. We can handle anything that stupid, poorly run hospital will throw at us, as long as her scan is clear tomorrow. Clear scans, that's all we want.
Needless to say, Ally rocked it today. She always does.
Note from listener: Maybe light a candle for Mommy.
