The weekend prior to getting the “wonderful news,” Olivia was very busy. She had Lexi, her big sister from her Chi Omega Sorority, visiting us from New York. Lexi made a comment that Olivia was full of energy; it was because she was excited to show Lexi around the Cape. As a result Olivia stayed in bed until noon the next day. She was not used to a lot of activity. They ended the weekend with a trip to Nantucket, Olivia’s friend Maggie joined them. In the afternoon they watched Caroline, Craig, and several friends, while they competed in a beach volleyball tournament at Jetties Beach. It was a beautiful summer day. It was also great for Olivia to see and spend some time with Pat, her assistant volleyball coach from Babson. Before they loaded the ferry for Hyannis they enjoyed a special dinner in town with a group of volleyball players and parents from Barnstable.
On August first we were thrilled to have such incredible news following Olivia’s first set of scans since treatment started in April. Dr. Thorton informed us that there are no visible tumors on her scans; the treatment is working! We all went to lunch to celebrate at Legal Seafood and ordered a sushi boat. They will continue treatment until the end of January; forty weeks. We are all looking forward to hearing that there are no signs of cancer or no evidence of disease NED.
At that same visit we met with Dr. Thorton and her Nurse Practitioner, Maggie, to discuss everything moving forward. Fortunately, Olivia was not scheduled for chemo on that day. Olivia inquired about the Lupron shots that she is getting to help protect her ovaries from the chemo treatments. It turns out she was due for the second shot. Olivia is tough, but getting stuck with needles is something she likes to avoid; they decided to do it right then. The side affects from the Lupron are similar to that of Menopause, mainly hot flashes and mood swings.
Olivia wanted to take advantage of her week with friends and family before having to head back to Dana Farber for her third, of seven, five day Irinotecan chemo infusions. She is making it priority to see friends before everyone starts leaving for their fall semester. Olivia will not be returning to Babson College this fall, she is taking a leave of absence to focus on her health. Her Oncologist initially recommended that she take the year off. In January, at the end of her treatment, Olivia is planning on returning to school.
On Sunday before returning to Boston Olivia was able to spend a little time on the boat, riding around Wequaquet Lake with Michael and Caroline. After they picked up Jack, Caroline’s boyfriend, and joined a large group of friends for dinner and a movie at the Wellfleet Drive-In.
Finals and papers are still lingering for Olivia from her spring semester at Babson. On Monday, following chemo, she thought it would be a good time to take her Quantitative Methods Exam. Over the course of the week she would only feel worse with each treatment. By seven o’clock Olivia was already nauseous and could no longer work on it. She continued vomiting all night and at the hospital the next morning.
Michael wanted to join us on Tuesday, but I warned him that she was in rough shape. She was not only exhausted but also dehydrated; she literally slept for the next three days. Olivia couldn’t handle the nausea, sleeping was the only time she felt okay. She barely ate or drank anything. Luckily, she was getting fluids each day with her chemo. Michael and I sat with her and kept her company, we were ready when she woke and needed medication or help of any kind. The summer Olympics helped us pass the time.
Each day she felt worse, Olivia could barely walk to and from the car. Her infusion nurse, Missy, told us that over the course of treatment Olivia’s body is breaking down. She is weaker with each treatment. It was difficult to hear this knowing she isn’t even half way through the forty weeks. Missy reminded Olivia that getting a feeding tube is still an option. Again, we worked to try and combat the side affects, in hopes that it would help Olivia tolerate the chemo, but it still knocked her down. The nurses keep repeating how difficult this particular pediatric regimen is and how well Olivia is doing overall.
The pediatric regimen is much different from the adult regimen, because children can tolerate a more aggressive treatment and are able to recover quicker. Even though Olivia is being treated at Dana Farber as an adult and not at the Jimmy Fund Clinic, she is still being treated with the pediatric regimen. Dr. Thorton is working with a team of doctors that includes Pediatric Oncologists from other hospitals.
It wasn’t because of the radiation sores that Olivia was refusing to eat. Those wounds have just about healed. Another side affect of radiation to the head and neck is dry mouth, making it difficult to eat anything. Olivia didn’t have the saliva to help her break down the foods she was trying to eat; being dehydrated didn’t help either. Dry mouth in addition to the nausea, caused by the chemo, made eating a chore. She wanted no part of it! On Thursday I stayed with Olivia during her infusion. After a pep talk from NP Maggie, she drank a chocolate smoothie. I then decided to head home a day early. Thankfully, I had Michael there to care for Olivia, because she was scheduled for another chemo infusion that following Friday.
Michael informed me that Olivia had been sick again Thursday into Friday. They hooked Olivia up to fluids right away while they decided how to proceed. After checking in on Olivia, NP Maggie spoke with Dr. Thorton and they decided against giving her Irinotecan on that fifth day. Maggie expressed serious concerns, worried that Olivia would end up in the hospital. I was relieved that they weren’t postponing the chemo, instead they were omitting that particular dose. Michael brought Olivia home and she went straight to bed and slept through the night.
We started up the fluids at home early on Saturday. Olivia asked for a smoothie, which indicated she was feeling better. To my surprise she went to breakfast with her friend Angela and two of her college friends. Olivia ate hash and eggs, went out to lunch, and then had a big dinner with dessert! I was concerned that she was overdoing it. I can’t describe the extremes that I experience with her that week. I figured she would slowly improve, but it was drastic. Olivia’s energy and mood were the complete opposite that they had been the day before. That night she needed her white blood cell booster shot, I was glad Michael offered to do it this time around. Sunday we did one bag of fluids early and Olivia felt great, she was hungry and ate big meals all day. She was trying to make up for all those meals she missed during the previous week.
On Monday August 15th Olivia was scheduled for Vincristine (chemo) after she did her labs/blood work. A major side affect of Vincristine is neuropathy and unfortunately Olivia has been showing some signs. Holding a pen and writing is more difficult, as well as, buttons, zippers etc. She has also lost her footing a few times, which is of course a major concern. Maggie consulted Dr. Thorton and they decided to skip the Vincristine this past week, which they had also done on week 16. Even though some neuropathy is expected; they want to be proactive and wait for some improvement before giving her more of this drug. We headed home and stopped at Pinkberry for frozen yogurt.
Friends Cate, Margot, Ashleigh and Liam joined Olivia on the boat for dinner and a sunset cruise. After planning this outing Olivia went through her older photos and found one of the same group. It was from a while ago, she thought maybe a year. Turns out it was a photo taken on the same day, exactly three years before. So much had happened in those three years, Olivia thought back and was grateful for their friendship. That was a long day, she was exhausted and went to bed early.
On Tuesday Olivia was very productive, trying to complete essays and finals. She was able to close two of the four doors that have been weighing on her since she was diagnosed. Her goal was to wrap up all her loose ends at Babson this week. She was happy to get out to Sandy Neck Beach atleast once this summer; Maggie, Michael, Ryan and Olivia enjoyed a bonfire at sunset on the 16th. We appreciated our only dinner party all summer with the Rice and McDonough families on our wedding anniversary the 19th. Olivia and Caroline surprised us with balloons and Key Lime Pies. Olivia and Michael, Caroline and Jack, and Margot and Emily enjoyed a couple rounds of Spike Ball before dinner. It was the most competitive action Olivia had seen in a while.
Thankfully, this next week Olivia does not have chemotheraphy. She will be spending time with friends that will be leaving soon for college. It will be an adjustment once they are gone, no doubt. We have a few ideas on how she can stay busy. Many of her friends go to school locally and she can easily visit them, if feeling up to it. This week she is also planning a trip to Babson to spend time with her volleyball teammates during pre-season. Olivia is a driven athlete with a passion for volleyball and when she realized she was not going to play this fall she was devastated! In the spring she worked hard preparing for the fall season as the returning setter. There are many aspects of Babson that Olivia enjoyed last year; Pres Scholars, Babson Dance Ensemble and of course her Chi Omega Sorority, but she poured most of her free time and energy into the Varsity Volleyball Team. Playing college volleyball was one of her goals that she set at a very young age, not returning this fall is taking a toll on her emotionally.
August 29th starts another five day Irinotecan chemo for Olivia (4/7). All we can do is take it one day at a time and make her as comfortable as possible.
“She stood in the storm and when the wind did not blow her away, she adjusted her sails.”
XO The Brodts