Olivia slowly improved after the first week. There has been a lot of uncertainty because we have not experienced anything like this before. Following the surgeries, she did notice her heart was racing and it was hard to take a deep breath. This went on for a few days. We thought maybe it was a side affect from the Lupron, which can cause chest pains amongst other things. When we returned the following Thursday, Dr. Thorton insisted on doing a CT scan to rule out a Pulmonary Aneurysm. After the initial shock, we were relieved to find out that the CT scan came back negative and Olivia was able to continue with treatment.
The last two weeks of chemotherapy haven’t been as aggressive as the first. Olivia has been in great spirits and reconnecting with a lot of friends returning home from college. Also, with the aid of social media, Olivia was able to meet and have lunch with a young woman on the Cape that recently finished her treatment for the same Alveolar Rhabdomyosarcoma. With a rare disease like this, we thought it would be impossible to find someone who was given the same diagnosis and just a short time ago. Her family contacted us and insisted on helping in any way they could; we felt as though it was a sign from above. They are an incredible resource for our family moving forward.
The weight of school work has been a major burden for Olivia because she left a month early to seek medical care. She is still trying to wrap up assignments, as well as, her finals at Babson College. Once our daughter can finally put these requirements behind her, she can totally focus on her health and well being.
On Thursday May 12th, Olivia was also accompanied by two close friends for her chemotherapy. They tell you it is going to be a short appointment, but with the travel time, it still ends up being a long day. After her labs, we were told Olivia’s white blood cell count was extremely low and she would need to be extra careful with her weakened immune system. However, we were relieved that they allowed us to move forward with her treatment.
We were ready to start radiation on the 16th for six weeks, but oddly weren’t given a schedule for the following week. After a night of no sleep and emails to various doctors, we were finally informed early on the 13th. Because the Chemotherapy is working, they postponed radiation for three weeks. We are thrilled that her treatment has made some progress, and with a little creative scheduling, we will adjust to the new regimen.
Approaching the third week of chemotherapy, Olivia noticed her hair was falling out. After only a few days, she had reached the point of being ready to shave her head. Michael offered to help while Olivia’s close friend Maggie assisted with creating hairstyles and lightening the mood. It turned out to be a fun afternoon and was in Olivia’s words “liberating.” Her sister Caroline used it as an opportunity to document the process. She is feeling positive with moving forward with her RMS journey.
The past several weeks have been a total rush of emotions. Scared, we immediately reached out to family, friends and neighbors for support and advice. After going public with Olivia’s battle on social media, the community’s response exploded. We have heard from old and new friends about their own experiences with battling cancer. They shared with us resources and have given us the sense of hope that we desperately needed. Before we could even process the diagnosis there were prayers dedicated, fundraisers organized, a Meal Train set up and a gofundme page devoted to supporting our daughter and her fight against ARMS. The love and support that Olivia is receiving from all the different people she has touched over the years is extraordinary. The thoughtful prayers, positive energy, and community spirit is lifting us up and giving us strength to help her fight ARMS head on.
“We can’t always choose the music life plays for us, but we can choose how we dance to it.”
XO The Brodts