Week 18 – NON Chemo Week
The summer was coming to an end and spending time with friends before each one left for college was a priority for Olivia. She was excited because some friends from Babson were in town, sisters Lauren and Lissy. They met Olivia for a great lunch at the Black Cat by Hyannis Harbor. It makes me happy when her friends from college make an effort to see Olivia when they are visiting the Cape. A special overnight to Nantucket was something Olivia had looked forward to all summer. She was excited that her friend Brooke could join her and flying over on a small plane was a special treat. They did a lot of walking, shopping, eating and took advantage of some quiet time on the beach; a typical Nantucket holiday. She did notice that the thrush returned in her mouth because while traveling she wasn’t using the medicated rinse regularly. Olivia was home for one night and then set off for Babson College to visit her volleyball team before the season started, her first time driving long distance since April. Even though Maggie had been sick, she returned home to say goodbye. Olivia, Michael and their friend Ryan took Maggie out for a farewell dinner. She was leaving for college the following morning. On Friday, Olivia enjoyed her friend Samantha’s company at breakfast and then spent the afternoon running college errands with Michael. By the time she got home Friday night she was exhausted.
I was hoping that Olivia would take a few days to eat well and rest before the difficult week ahead. She was doing fairly well, very active, and in good spirits. Then suddenly without any treatment she had a myriad of symptoms all weekend, prior to the week long (Irinetecan) chemo treatment. She had a fever both Saturday and Sunday with muscle aches, fatigue, loss of appetite, swollen glands, yellow mucus; all non-related to the chemotherapy. She did not get out of bed, I was nervous and very close to taking her to the hospital. It was as if everyone forgot Olivia was in the middle of treatment because she was living a fairly normal life those past few weeks. Once she was given the “wonderful news” (no visible tumors) by the doctor, we let our guards down.
Only weighing 116 pounds to start the week of August 29th was a real disappointment. She would only lose more weight within that week. Olivia’s eyes were swollen, especially the left which was concerning. She no longer has eyelashes or hair in her nose, without those hairs to filter out germs and irritants it is even harder for her to fight off viruses and infections. Her eyes are more sensitive and dry due to radiation. With all the symptoms and swelling, Dr. Thorton insisted we visit Mass General Eye and Ear Emergency, schedule and MRI, and have a Mono test done during infusion. A friend that Olivia was in contact with had recently been diagnosed with Conjunctivitis and Mono; we prayed that she only had a bug and her body was doing it’s best to fight it off.
We arrived at MEE Emergency at seven on Monday night after chemo. Olivia walked slowly with a vomit bag in hand, they immediately provided a wheelchair and rushed her ahead of the other patients. The doctors flipped her eye lids and told us that her eyes looked like sandpaper! They were irritated and dry because of the radiation, contacts, and conjunctivitis. When we arrived for chemo on Tuesday, Dr. Thorton said she had lost sleep thinking about Olivia and all of her current symptoms. She decided to skip the chemo for that Tuesday and wait for the Mono results before moving forward on Wednesday. They did however provide Olivia with the fluids that she so desperately needed. The doctor also wanted another MRI because of the swelling of Olivia’s lymph nodes, especially on the left side of her face. We went straight to the hotel after the MRI. The hotel was three miles from Dana Farber and she still managed to fall asleep on the ride over there. “Sleeping is when I feel the best,” she would say, “the nausea is overwhelming.” Olivia slept all afternoon, and through the night.
The next morning Olivia had a follow-up appointment with her Radiation Oncologist, Dr. Tishler. All in all, he was thrilled with the results. Her taste and smell are back, which is a blessing. The main side affects from radiation now are the dry mouth (something else we take for granted), runny nose, and dry eyes. We were given good news on Wednesday, the Mono test came back negative and she was able to continue with treatment. Dr. Thorton also informed us that the MRI thankfully, did not show any abnormalities. Missy, Olivia’s infusion nurse, reminded us that a weakened immune system is really like a seesaw; it is hard to know exactly when she will be prone to infection.
One of the chemo drugs used in Olivia’s treatment is Vincristine. It is a known drug that causes neuropathy, and can cause permanent damage. First thing Thursday Olivia had a Neurology appointment, the office was conveniently located in the Yawkey Building at Dana Farber. She was extremely nauseous laying on the couch for most of the exam while holding her blue vomit bag in hand. The Neurologist felt she should start Physical Therapy immediately to try and gain some of her strength back. Olivia no longer has full extension of her arms and has had trouble walking, sometimes even dragging her feet because of loss of muscle and weakness in her legs.
We drove to and from Dana Farber that week watching as the college students arrived in Boston with all their belongings in tow. It was a constant reminder of our unique situation. After infusion on Thursday we had to race over to Salon 10. We needed to rescheduled her wig appointment from Tuesday to Thursday because of the unexpected MRI. I was worried about how she would feel that late in the week. It wasn’t a surprise when she fell asleep while the hairstylist was cutting her wig. Watching my once charismatic, highly motivated, energetic daughter sleep all day and all night is beyond difficult. That week she only woke long enough to roll over, use the bathroom, or walk to the car. The more Olivia slept, the less she moved and the weaker she became. It was impossible to try and keep her awake long enough to get her to eat or drink anything. By the end of the week Olivia’s weight dropped to 106 pounds, her lowest weight yet. Dr. Thorton reviewed the treatment schedule and now because of the delays, Olivia will be getting treatment into the middle of February. At that point she hopes to be strong enough to be back at school. It will most definitely be a major challenge for her.
We did have a nice surprise on Friday. The head nurse, Kerry, called me and asked if Olivia would be interested in a pair of Patriots tickets. Of course, I answered. I just needed to check her schedule. Every year a gentleman offers these tickets to DFCI to give out to their patients; I was thrilled that they thought of Olivia. She chose to take her sister Caroline to their first Patriots football game. It amazes me how a kind gesture can turn around a challenging week. That afternoon Olivia’s appetite returned, she asked if we could stop for a cheeseburger on the way home. I was so excited I offered to run and get a cheeseburger right then and there, she changed her mind and wanted a double. Olivia’s other infusion nurse, Katie, mentioned how it is common for chemo patients to start craving food at the end of their chemo session. On the way home we stopped for Pinkberry frozen yogurt, and that is when I knew she was finally feeling better.
We arrived home at dinnertime, both of us were exhausted from being away all week, let alone the treatment. Michael came over to spend some time with Olivia because he was leaving for UMass Amherst the following morning. Saturday was Barnstable Volleyball’s annual PlayDay. Olivia was determined to watch her sister Caroline play and was able to attend a couple matches that morning. The rest of the Labor Day weekend was a recovery period.
Week 20 – NON Chemo Week
Olivia spent this week adjusting to being home, while everyone had returned to college. My heart ached for her because I could see that she was upset and frustrated. We even picked up an agenda; now she could do some planning and have some consistency. It is exciting to have her home to support Caroline and her volleyball team, watching and traveling to their games will be a good distraction from being home and not at Babson. We hope to also support her Babson Volleyball team when we can fit it into her schedule. On the seventh, she completed the last of her essays and finals from spring semester; Olivia could finally have closure with Freshman year and be considered a Sophomore. It was a huge weight lifted and now she can focus on the future. The rest of the week was slow, we took it one day at a time, sleeping a little less each day and eating a little more. Fortunately, she had something to look forward to at the end of the week. She was invited to the Babson Presidential Scholar’s overnight retreat in Boston.
I drove Olivia to Babson to meet the bus at nine on Friday. After sleeping in the car, she was tired and said she wanted to go home. We waited and once she saw some friends she literally lit up with a big smile; it was obvious that she would be fine. After separating into groups they took part in an incredible scavenger hunt in the city and later had a relaxing lunch. She kept me updated and napped before dinner and then left dinner early to go back to bed. The students woke up early on Saturday, they had a full schedule of events before heading back to Babson in the afternoon. At that point Olivia met up with Lexi, her big sister from the Chi Omega Sorority. She took another nap in Lexi’s room and went to dinner with both Lexi and her grand-big sister, Katherine. After dinner they had a great time visiting with their extended family, Jenny, and Alex. Again, Olivia was in bed early, she now has her routine down. Rest is what she needs when trying to get in a full day of activities. On Sunday she went out to breakfast with Lexi and lunch with her Freshman roommate Ishaani. They had not spoken much over the summer and it was good to catch-up. In the afternoon she was able to reconnect with her fellow dancers in the Babson Dance Ensemble at their 2016 auditions and then went to dinner with her friend Amanda. Olivia ended the weekend by spending some quality time with her volleyball friends and teammates, Shannon and Sarah.
Week 21 – NON Chemo Week
We returned home, Olivia was tired from her three nights away. She was looking forward to sleeping in her own bed. Monday night (9/12) she watched her sister play in a great match against Hopkinton. The next morning Olivia thought it was weird that all her muscles were sore. I told her it was from sitting in the bleachers cheering for her sister. She didn’t believe me until I explained how one minute your muscles are tense and then you let go and then your muscles are tense again, throughout the match. I think many older parents and grandparents know exactly what I mean. A similar thing happened after a gentle yoga class that she took on Tuesday. She went to bed early and woke again with even more muscle soreness.
Olivia is trying not to get discouraged, she has always been physically active; never did she need to workout because of being weak or out of shape. We all went out for a delicious dinner at Misaki on Wednesday with Caroline’s boyfriend Jack. We were celebrating both a win for Caroline and her volleyball team, as well as, Caroline getting her license. Olivia was in a great mood, almost like her old self. Unfortunately, she woke up with a swollen face on Thursday, again mainly on the left side. She started Physical Therapy with TC at Cape Cod Rehab in Osterville. During her exam it was more than evident that Olivia needed PT to get her moving and working on her balance and strength. She will get physical therapy at least twice a week until she returns to school. When she woke up Friday the swelling on her face was even worse, similar to the swelling back in April. The yellow discharge from her eyes has returned from the conjunctivitis. She needs to be more consistent with the eyedrops; it is hard for Olivia to remember because her medication list is already extensive. Luckily, there are no other symptoms at this time. Her good friend Cate was home and joined Olivia for breakfast to get her mind off of her illness. We want to get through this weekend without having to go to Boston. We are going to Dana Farber on Monday (9/19) for her next chemo session; it is a long day but we should be able to return home afterwards.
On Going Community Support by Olivia’s Peers
The outpouring of kindness, love, and support by Olivia’s peers in response to her illness has been both beautiful and impressive. It is a testament to how wonderful and loved Olivia is and we appreciate every single gesture.
Barnstable High School Student Council Sold Key Chains
Students and teachers are also regularly sending post cards with inspirational quotes, drawings, and/or good deeds that they performed in her honor.
Barnstable HS Alumni
Sold Barnstable High School and Barnstable High School Volleyball Red “Olivia Strong” Bracelets, as well as, Started a “Rally Up” account for Olivia.
Connect the Dots Theatre Company
Barnstable HS Alumni
Donated their profits from their successful debut this summer “Proof.”
Barnstable HS Alumni
Created “Trees of Hope for Olivia”-Allie is donating a percentage of her proceeds from each sale of her specific pendants.
Babson Sigma Phi Epsilon Fraternity
Babson College Students
Contacted the US Olympic Volleyball Team on Olivia’s behalf. The team sent Olivia a care package.
Local Young Adults
More than 150 young adults attended the Fast Fours Volleyball Tournament to support Olivia in her fight against cancer.
Babson College Student
Selling “Olivia Strong” Blue Bracelets at Babson College.
Barnstable HS Senior
Provided rides for Caroline at both the end and the beginning of this school year, which allowed me more time to care for Olivia.
A hero is an ordinary individual who finds the strength to perservere and endure in spite of overwhelming obstacles.
XO The Brodts