We headed to the Hematology/Oncology Clinic today to have Averi's blood work done and to find out when she needs to return for Cycle #2. Kaili tagged along and hung out at the Sibling Clubhouse.
(This is how cheap people with tiny kids turn a single stroller into a double stroller.)
The appointment went really well. Averi sat on the exam table and shredded the paper while I talked with the doctors. Dr. Pillay, Averi's Oncology fellow, mentioned that she's never seen Averi so excited. Yeah, that's right, a little dose of home goes a long way!
The visit didn't go how I thought it would, but it wasn't bad, just surprising. The first surprise was when I asked the NP how this treatment will affect Averi since the chemo is administered on days 1 and 2 and 8 and 9, instead of just four straight days. She said that usually, if everything goes well, the chemo is given the first two days and then the patient can go home for 5 days and return for the second dose since that's about the time the blood counts start going down anyways. I realize that's usual and Averi doesn't know what that word means, but there's at least a chance.
She then reminded me (I forgot, but probably on purpose) that Averi needs another bone marrow biopsy before they can start Cycle #2. Seriously, I am so sick of her going to the OR and returning with issues. I am not past putting a sign on her broviac that says, "please clean with alchol before using," and one on her G-tube that says, "Do Not Touch!" Luckily, if this one comes back with good results, she won't need another one for several months. Let's hope for good.
The last thing the NP explained was that they wanted to wait until Monday to have Averi come back in so that she could get a little break to finish recovering from the PICU visit. I asked her if there was any way we could start on Thursday (the official day 28) or Friday, not because we love the hospital, but just in hopes of her being home by Thanksgiving (which is 3 weeks from Thurs). She said she understood our concern but that it depended on Averi's blood work results and she would give me call when they returned.
The good news was when she told me that sometimes, sometimes, they let patients go home for a little while during the day for special occasions, like holidays. It only happens if their counts are starting to come up and they are close to going home but not quite ready. How cool would it be if she could get a field trip from the hospital while my family is in town for Thanksgiving or especially for Christmas?
Later this afternoon, she called to let me know that Averi's neutrophil counts are at about 630 and they have to be at 1,000 to start the next cycle, which isn't very likely by this week. I definitely don't want to rush things and make Averi sicker than she has to be, so we are going to wait until Monday to have her admitted.
The tentative plan is to have more blood work done on Thursday to check her neutrophils and then have her admitted on Monday for her biopsy. Her chemo will start either Tuesday or Wednesday, depending on when the results get back, and then hopefully we can come home for a few days at the end of the week before she gets the second dose. Until then, we get the rest of the week off to hang out at home and spend more time as a family!