We have always led very busy lives, working multiple jobs and having our children involved in multiple activities throughout the year. Planning months in advance was absolutely necessary; spontaneous was not a word you would use to describe our lifestyle. When we were given Olivia’s schedule for the forty weeks of treatment, I took out my calendar and my sharpie and double checked each week and the specific chemo that would be administered that week. Let’s just say over the last several weeks, we are all learning to be more flexible. When experiencing a cancer fight first hand, you find out quickly that from one week to the next the scheduling could change slightly or dramatically. The first major change was postponing the radiation by three weeks, due to the positive results of the chemo treatments.
During our meeting with Dr. Thorton on week four, she informed us (as if we already knew) that the particular drug, Irinotecan, is administered consecutively over the course of five days. We all looked at each other with question, what did that mean exactly? Over forty weeks of treatment, Olivia will receive seven weeks of Irinotecan, Monday through Friday, not just Thursdays like we originally planned. The harsh reality of this treatment was setting in, almost 30 more days of chemo.
While we regrouped after given this new set of information, Olivia’s friends and I began to decide who would be available and when over the next four days. This was a big weekend. Ever since Olivia’s first dance show, at two years old, we looked forward to watching our daughters perform in the Beth Walsh Dance Centre’s Spring Show. At this point, it has become a tradition. This would be Caroline’s (Olivia’s sister) first year performing without Olivia at her side. To stay in Boston for these next few days was not an option. With the support of Olivia’s boyfriend, Michael and her girlfriends Maggie, Margot, and Ashleigh, we were all able to take turns bringing Olivia back up to Boston for chemo and home again to watch Caroline perform twice in “Off to Neverland.” Not only has BWDC been working hard to fundraise for Olivia by selling the light blue “Dancer Against Cancer” bracelets, but also they brought awareness by dedicating the show to Olivia and her fight against ARMS. We were all thrilled that she felt well enough to attend.
On the following Monday, Olivia was experiencing more nausea than usual; the two hour drive in from the Cape, for the fifth day of chemo in a row, was torture. When we arrived she had had enough. That afternoon she said she couldn’t handle another two hour drive home and asked if we could stay overnight. Over the next several days she would suffer from severe nausea. We decided it was best for her to stay put and try to rest. We found a place near Fenway and one night she felt well enough to attend her first Red Sox game. After week five, they tried to address the nausea with a new medication. Unfortunately, it did not agree with Olivia.
Memorial Day weekend will always be a reminder of how Olivia suffered, her worst experience yet. Olivia laid in bed in the fetal position for three days, she could barely lift her head to drink water and take her medications. Eating was out of the question. Sunday evening we spoke with Dr. Thorton and she recommended taking a steroid that we had on hand. It worked, Olivia was up in the middle of the night feeling human again, craving food and full of energy. The steroid kept her on track and allowed her to move around the house. By Wednesday, without any medication, she was (almost) her old self. She was busy with a yoga class, lunch with her friend Brooke and later playing/watching volleyball with Caroline, Michael and her old teammates Hannah and Stephanie.
Today is week six, infusion went well, Olivia’s muscles are still sore from repeatedly being sick over the holiday weekend. They recommend that Olivia plan on coming into the hospital two to three times a week for fluids. Keeping her hydrated will help to control some of the side affects and may help to avoid another bad episode.
Looking forward is difficult because next week starts her 6 weeks (M-F) of radiation treatments. We will be staying in the area during the week and heading back to the Cape on the weekends. Alongside the first week of radiation, Olivia will get her second five-day infusion of Irinotecan. Now aware of the symptoms, we hope to stay ahead of them and keep Olivia comfortable. After discussing the schedule today, we were told that instead of Thursdays it would make more sense to move her (non-Irinotecan) chemo treatments to Mondays. The original calendar is no longer legible, and I am definitely switching out my calendar and sharpie for a dry erase board and marker.
“Faith is taking the first step even when you don’t see the whole staircase. “
Martin Luther King, Jr.
XO The Brodts