The rest of this round went really well! Liv didn’t complain of any aches or pains. She still didn’t love a lot of food, but she was able to find a few things that she did like and made do with those 🙂 She still had a few emotional ups and downs, but not bad at all and totally do-able. Honestly everything felt normal, the only reminders that she had cancer was the bald head, the daily chemo pill, that not many things tasted good to her, she was really clingy and hung on me a lot, and the one at home visit the home health care nurse made. She was able to go to school on Thursdays (she had clinic on Tuesdays, so she couldn’t go then) and she even graduated preschool the morning she “graduated” from Consolidation!
We are so happy and grateful that she did so well during Consolidation! We knew going into it that it was supposed to be the “easiest” round but after the first few days, I was really worried that she wouldn’t do as well as we were hoping. After she adjusted to the new way that her body felt, she did great!
Some fun things we did the last two weeks:
Yesterday we started Interim Maintenance 1. The day before, the nurse came to our house to access Liv’s ports and draw labs. This round is count dependent, which means her blood counts have to be at a certain level in order to receive the chemo. The last time the nurse had to come and do port access at home, Liv freaked out and was screaming and fighting her to get the needle in. This time, Daci was home for the access and Liv was so excited to show her how she does it. I was so grateful that Daci was there and that she helped her feel brave because it went so much better this time! A few hours later the hospital called to let me know that Livvi made counts and could come for her appointment the next day. We will be doing this every day before clinic this round.
Her counts were:
IM 1 is 6o days long and consists of a clinic day every 10 days to receive Methotrexate Chemo and Vincristine Chemo in her port. Both of these are “pushes”, so they are quick. They only take 1-2 minutes to push into her port. She will also have to do the Pentamidine antibiotic in clinic every three weeks since she has her Septra allergy. Pentamidine takes one hour to drip into her port, and then she has to be monitored for ten minutes after that. Each time we go in for clinic, they increase the doses of the Methotrexate and Vincristine, if she handled the previous dose well. The doctors said that some people do great during IM 1, they don’t really have any side effects, and their counts only drop slightly. Others, though, struggle with nausea and headaches and mouth sores and their counts drop significantly. We are obviously hoping for the first case 🙂
I am one of those people that needs to know whats happening detail by detail. Haha. Our nurse is fabulous and patiently answers all of my questions 🙂 I like to know what to expect and what future rounds hold. Sometimes they don’t like to go into too much detail, because every patient is so different. Everyone reacts so differently to the meds and treatment schedule may get altered, depending on if they make counts, etc. But I did get a little bit of information about the rounds coming up. This round (Interim Maintenance 1) is 60 days, then we move into Delayed Intensification. DI is the round that is hardest on the kids (along with Induction, which was the first month). Counts drop significantly, many have to be admitted to the hospital with fevers, nausea, vomiting, pain, etc. DI is also 60 days long. After DI is Interim Maintenance 2. This round is also 60 days and very similar to IM 1, so the doctors said how she handles IM 1 will probably tell us how she will do in IM 2. Like I said, we are hoping she doesn’t get too sick with this round. If thats the case, then she will probably only have the 60 days of Delayed Intensification that is so hard on her. If the IM phases are hard on her, we are looking at 180 days of her feeling yucky 😦 They told us if we have anything we want to do this summer, to do it pretty soon so that she can get some things in before she can’t be around people again.
Yesterday’s clinic went much better than the last one. She was quiet and reserved but did actually answer some of the nurse’s questions. When no one was in the room with us she was goofy and silly with Rick and I. We played games and did art while we waited for all of the medicine to be done.