When I arrived at the hospital after work on Friday, Chris and Scarlett had just been put in a room. Scarlett tolerated her port access and lab draw, and was ready for chemo. It took a long while to get everything in order, so we spent a lot of time waiting with an impatient little girl, but she did as well as could be expected with toys, Yo Gabba Gabba on her iPad and snuggling. We were in the hospital for more than 7 hours, then sat in traffic for 90 minutes when it should have taken 20, so it's a miracle we got home with any sheds of sanity.
She was pre-medicated for nausea, just in case. Then she got both 90-minute infusions back to back. Around the time the chemo began, her nurse practitioner came in to check on us and discuss some of the last details. She stayed for nearly an hour, answering our questions, discussing the schedules and side effects we should expect, and looking at pictures of Scarlett (a favorite past time of us all!)
After talking with her, we have a much better idea of what we are looking at. The main talking points:
- She will get three different drugs: Two chemotherapies - temador and irinotecan - and Avastin, which is intended to stop blood vessels from continuing to feed the tumor cells.
- She is scheduled to get infusions of Avastin and irinotecan every other Friday. Temador will be given for the first 5 days of the cycle at home.
- The most significant side effects we are watching for are vomiting and diarrhea - icky, but not unbearable. There are several other possibilities, including hair loss, fatigue, slow wound healing, and nose bleeds, to name a few. Eventually, we will have to closely watch her blood counts, but she should not (fingers crossed) get as low as in her first chemo, and we should be able to avoid blood transfusions.
- She is currently scheduled for 8 months of this routine, with MRIs to monitor for tumor progression (or, we hope, lack thereof) every two months.
We'll never know, but it has made us a little hyper-vigilant. We set up our video baby monitor again, after several months of not using it, so that we can easily check on her without waking her with an open door. I frequently feel the need to check on her before bed, just to make sure everything is okay. We also turned her car seat around to face forward. I was not too keen on this, as I am well aware it is safer to be rear-facing as long as possible, and at nearly 25 pounds, she is far from the limit for rear-facing; however, she is two, so she passes the recommended age, and she spends so much time in the car (at least 2.5 hours a day for school and therapy) that it made us feel better knowing we could see her easily on long drives. She loves being able to see us, so at least she is happy.
We are taking it one day at a time, still watching her like hawks. If it could be like this for the next 8 months, we would be in good shape. There's no way I am going to bet on it, but at least so far, we are feeling confidant.
One down, 15 to go.