After weeks of anxiety, on April 21st our 19 year old daughter, Olivia, was given her diagnosis. She has Alveolar Rhabdomyosarcoma (ARMS), a rare cancer made up of cells that normally develop in the skeletal muscles of children and young adults, only 250 cases a year in the US. The next day we met with our oncologist Dr. Thorton from the Sarcoma Department at Dana Farber Cancer Institute. The CT and PET scans show Olivia’s Sarcoma is located in her head and neck only. Her doctor is projecting 40 weeks of treatment with a combination of both Chemotherapy and Radiation.
The shock and sense of surrealism was and is numbing, but we felt we needed to inform family, friends and the community. The original diagnosis back on April 11th was Hodgkin’s Lymphoma, but later was changed to Rhabdomyosarcoma (RMS). Each one of us is receiving heartfelt messages of support. When Olivia opens a special text or email, from all the people she has touched over the years, her face lights up filled with love and hope. Then she shares with us her award winning smile and our faith is restored.
Olivia went back and forth to school for a while, she was missing Babson and her friends. Her boyfriend, Michael, was able to take her to the CHI OMEGA Spring Formal that she was anticipating. She was also able to finish the year with her volleyball team and play in their spring tournament. That same evening Olivia performed with the Babson Dance Ensemble in their spring show “Get Wild.” The support from her peers has been outstanding, I am so impressed with all her friends. She is definitely feeling better moving forward with some answers.
Mornings were difficult, Olivia had major headaches as she approached treatment. On Tuesday the 26th we had a few extra hours, (after her 2 hr MRI) we waited to see if we could squeeze in some appointments and somehow it happen. The team of doctors were finally on board with speeding things up. After a impromptu meeting with the doctor, they were able to schedule her labs very early on Thursday with two minor surgeries followed by a full day of Chemo. Her doctor asked Pediatrics from Children’s Hospital to get involved in discussing her treatment because she is borderline at 19 and because RMS is common in children. A huge sigh of relief; the MRI showed no evidence of the tumor spreading to her brain.
On Thursday we were also able to meet with the Radiation Department. They want her to do six weeks of Radiation, five days a week, starting on week four of her treatment. They also informed Olivia that the tumor in her sinuses has damaged some nerve endings, which is why she hasn’t been able to smell and that may be permanent. After a long day, this was hard to hear.
Thursday came and we arrived at Dana Farber at 6:30 for lab work. Olivia then rushed to Brigham and Women’s to have her port implanted for the Chemo. She decided to take part in a study for Ovarian Tissue Freezing, that was the second surgery. Unfortunately, there was an overlap of appointments. In recovery Olivia watched the clock in front of her move from 11 to 2:30 knowing she was to be over at Dana Farber at noon for treatment. If you know Olivia, she is timely, and even after surgery she was still frustrated that she was late.
Leaving the rushed atmosphere at Brigham and Women’s Day Surgery we then crossed the bridge to Dana Farber where the atmosphere immediately decompressed. Floor six in the Yawkey Building is the Sarcoma Floor, it is also the floor for Olivia’s Chemotherapy . Because it was late, they almost reconsidered starting her treatment. Together we convinced the doctors that she needed it and could handle it, at 8:30 we headed back to the Cape.
Olivia is improving each day with much needed bedrest. We are all seriously relieved that the tumor has decreased since the initial Chemotherapy and has taken some of the pressure away from her head. Now we are focused on the nausea and finding a new routine for the next few months.
Thank you for all the support. Please keep the positive energy and prayers coming, we appreciate each and every one!!
XO The Brodts