May 1, 2013

While we were flying yesterday, Clayton's blood sample was being processed to determine his HAMA status. The verdict: HAMA negative. Finally! This means that we will finally be doing treatment again. This is the first time since October that his little body has allowed us to do so. In August and October we did high dose inpatient 3f8 (antibody) treatment, but this next treatment will be standard dose outpatient treatment. Hopefully that will make it much easier on everyone. I do know that sometimes these treatments can throw you nasty surprises. Hopefully that won't be the purpose of my "bad feeling" leading up to this trip.
Anyway, we scored one of the new rooms at the Ronald which has been awesome! We have also gotten to bump into some of my favorite babies like Miss Lily...Love her! They are from England and she has a twin sister. They are precious. Her and Clayton had back to back CTs yesterday so Lily's mom and I got to catch up which was nice. The weather is also absolutely beautiful! George is coming up this Saturday and I see some walks in the park in our future. The only negative that their allergy season is in full swing. But what would a trip to NYC be without adding an extra week and getting sick?
Which, brings me back to Clayton's treatment. They can put us on the schedule next week, so that is what we are going to do. I know this interferes with the Angel Auction, but it would cost us a lot of money to come home the week of the auction and them come back the next week. It just makes the most sense to stay. Therefore...we are moving the Angel Auction back a week to Thursday, May 16. I will put that on Facebook later today and I will make flyers with the updated information as well. I do hope the change does not inconvenience anyone.
We also checked in with his pulmonologist and we were happy to report no more respiratory issues since starting his daily breathing treatments. She said he sounded great and we can talk about stopping the treatments in another six months. Otherwise, it is just a slew of medications for the poor baby-man. Two pre-meds for MIBG and with treatment next week we get to throw in a fierce shot that can cause bone pain. Not fun...for anyone.
'Til tomorrow...