Decide to Rise

Olivia is getting a huge response for her positive and inspiring attitude. Staying positive isn’t easy for the average person, but she is anything but average. Our community has put us first and they continue to uplift us with their kindness and generosity. There were many dark days though that have not been addressed, days where Olivia struggled physically and emotionally. Once we heard the wonderful news, that she was free of tumors, we began to worry about the fall months.  Not returning to college like so many fortunate, young people would be an adjustment. What wasn’t expected was for her to be discarded by her closest friends. Feeling weak from treatment and empty inside, Olivia decided to pick her head up and look to the future with all that it has to offer. The further she moved away from the radiation and the real pain that comes with heartache, the stronger she has become. She embraces the pain and now burns it as fuel. That I find inspiring. I believe that in the end some of your greatest pain becomes your greatest strength. There is no stopping Olivia now as she begins a new chapter at Babson.

November

Weeks 28-29

On Halloween it was confirmed, from the scans done previously, that Olivia was free of tumors. She had an all day chemo infusion and her third Lupron shot to protect her ovaries. The Lupron lasts for three months and causes menopausal side affects. She experiences hot flashes several times a day, the worst (as some of you know) are the ones that wake you in the middle of the night. I am amazed that she doesn’t complain, with all she has been through. She has her routine and unless you know her well, you wouldn’t even realize she was experiencing one.

On Tuesday November 1st, we went to support Beth Walsh Dance Center at their Company Concert. It was exciting for Olivia and Caroline to see how much the dancers have improved and what they have been working on to prepare for the upcoming competition season. Not only did we love the exciting new choreography, but also it was good to see a lot of familiar faces.

Once you hear that the treatment is working and that there will be an end to treatment, you begin to worry about quality of life. Would Olivia’s life be different or would she be able to pick up where she left off? If you ask her there is no question that she will reemerge and set even higher goals for herself. Physical therapy and yoga are playing major roles in helping her to build strength, flexibility and balance. We were thrilled, after such an extensive cancer treatment, that her body was noticeably responding.

Olivia was looking forward to visiting Babson that coming weekend. She went out to lunch with her friend Madi on Saturday to a Babson graduate’s Mainely Burger Restaurant in Cambridge, before cheering on the Babson Volleyball team at their Semi-Final match vs MIT. It was good for Olivia to see the team play and catch up with some of the volleyball alumni. Later that night, she reunited with her sisters at the Chi Omega Semi-Formal. She ate a quiet breakfast with Madi that following morning and drove home.

Continuing with her physical therapy and yoga classes, Olivia’s energy and enthusiasm is steadily increasing. After Thursday’s yoga class I received a text that said, “Best yoga class yet!” Just a short time ago, I took these simple things for granted. I clearly remember that text and how wonderful I felt reading it.

Olivia missed painting at Chalkboard Studios with her mentor Jamie and decided to go on Saturday. After painting she headed back to Babson for the Delta Sigma Pi Semi-Formal. Sunday was slating/voting for Executive Board positions for Chi Omega; it was an all day event. At the end of the day, she was excited and incredibly honored to be voted in as Vice President. Ever since that weekend, she has been busy researching and planning for the upcoming year. I had no idea it would be such a huge part of the anticipation and her return to Babson. For obvious reasons, she needed the distraction and it came at the perfect time.

Weeks 30-31

Before driving back home to the Cape, she went out to lunch with Shannon, Sarah and Annissa, friends from Babson. Once home, Olivia was still high on adrenaline from the weekend, but suddenly she began to lose her voice. By morning she had a major viral infection, she was in bed for the rest of the week. Unfortunately, that meant missing both her PT appointments and yoga classes.

We couldn’t convince her to stay home and miss her sister and the BHS Volleyball team play and win the State Semi-Finals on Wednesday night. With a few days to recover, she was on the mend for the State Championship that Saturday against Barnstable’s rival Newton North. It was a special treat for Olivia to see her sister win her second State Championship; even sweeter was that it was the team that Olivia lost to in the Semi-Finals her senior year at BHS. She sat with friends and alumni from BHS and BHSVB. The afterparty went late into the night; needless to say she didn’t want to miss any of it.

Sunday afternoon Olivia, Caroline, and I left for Newport for a family vacation over Thanksgiving break. Craig joined us later. We enjoyed touring the Newport area, as well as, the mansions together. One living space meant we were all together for five days, not the usual comings and goings that we have all gotten used to. After the unexpected cancer treatment schedule and the exciting volleyball season, we were overdue for some family bonding.

By Thursday, Olivia felt she had fully recovered from her nasty cold. She did however trace it back to Babson and a late night out with her friends. She said she felt fine at the time, but later admitted she did not take any extra precautions, lesson learned. When you are in the moment and feeling great, sometimes you forget you are sick or in treatment. She found out that can be both beneficial and detrimental.

We separated on Friday, Craig and Caroline left to return to the Cape and Olivia and I drove to Dana Farber from Newport. It was the first day of her five day infusion of Irinoteacan. Dr. Thornton agreed to move the five day, after the holiday, to be able to get away as a family without interruptions. We later found out that moves Olivia’s regular treatment days to Fridays instead of Mondays, for the remainder of her treatment.

For this five day we decided to commute, the traffic was a lot better because of the weekend. On the weekends it is a little different at Dana Farber, it’s a different floor and different nurses. When you get spoiled, like Olivia, you tend to miss the nurses that know you. They know your regimen, where you came from, the struggles that you overcame, and they treat you differently than someone you are just meeting.

December

Weeks 32-33

Tuesday, November 29th, was her fifth day of chemo and her meeting with Genetic Counseling. Of course they asked a lot of questions about our family history. We didn’t have much to provide. It has been difficult not having either of my parents to question or to reassure me that everything would be okay. Disease and illness isn’t usually the topic of conversation when you are visiting with family, especially when you don’t see them that often and aren’t in touch regularly. At a later date, Genetics took Olivia’s blood samples, prior to chemotherapy. They explained to us how they can see if there are mutations in her genes that would cause her to develop a different type of cancer later in life. Some people opt out of this test because the news can be devastating. Olivia insisted on knowing what is ahead for her. I was proud of her for making a difficult decision on her own and not wavering for even a moment. At this time, they don’t feel it is necessary for Caroline to be tested.

We drove back to Dana Farber for a sixth day that week to meet with an ENT doctor. Thick nasal congestion has been an ongoing problem for Olivia; her oncologist felt we should meet with an Ear Nose and Throat specialist. The radiation to her head and neck was extensive and as a result this congestion may be chronic. If it doesn’t improve, it was reassuring to know that they could try surgery. It may or may not help with the swelling that she is also experiencing most mornings. We returned home in time for the Annual Barnstable Volleyball Banquet, a final celebration for an amazing season.

The following morning she went back to Babson to see The Babson Dance Ensemble perform. BDE is the largest student run organization at Babson College. One of her mentors, Carson, dedicated and choreographed two incredible dances, (Rise Up and Lay it All on Me), to Olivia and her fight. After the show, she stayed the night with her friend Lexi. On Friday, she went to breakfast with Lauren, a friend from BDE. Then she reunited with her volleyball team at their annual banquet and later met up with Babson alums in Boston. Saturday was a five hour Chi Omega Executive Board training session for her sorority and then Olivia returned home for a couple nights.

 

On the December 4th, she took the time to paint with Jamie, at Chalkboard studios. She worked on her self-portrait in watercolor. The studio has been a wonderful outlet for Olivia, painting and being creative in general, has been therapeutic for her. She is fortunate to have such a lasting relationship with several of the artists at the studio.

Again returning to Babson for a fun night, she attended the Presidential Scholar Holiday Party at The Paint Bar in Newton. Olivia was thrilled because she fell in love with the concept/vibe/space and would love to be involved in a local business that also promotes creativity. It was a shame she had to leave early for her first chapter meeting as Vice President.

As a result of all the generosity in this community Olivia had several “thank you” lists and finally found the time to sit on Tuesday to review and write over one hundred Christmas cards, as well as, thank you notes. It felt good to finally personally acknowledge a lot of the individuals that made this journey that much easier.

Olivia and Craig were invited to an Arts Foundation Party held at Chalkboard Studios and bumped into local artists, educators, and mentors including Jen Villa and Carl Lopes. Seeing them gave her an incredible boost.

After weeks of hearing Olivia say, “Mom, keep Saturday, December 10th, open.” I would finally find out what she had arranged for us. I do all the planning in this family; it was exciting to anticipate something so wonderful, just for me. A year ago driving into Boston was such a chore; after doing it several times a week it has become routine. She made reservations for parking and dinner at the Oceanaire Restaurant. At dinner she presented me with tickets to Nora Jones at the Orpheum Theater. A thoughtful gesture of appreciation for my care taking over the last several months.  Olivia grew up listening to Nora Jones amongst other artists, back when the adults chose the music. I forgot how much I enjoyed my own music. As parents we get caught up in everyday life, always trying to beat the clock and forget to take care of ourselves. We also raise our children hoping they understand how important it is to have a kind and selfless heart, with all Olivia is enduring, somehow she was thinking of me. A night I will never forget!

Week 34-35

After missing physical therapy and yoga because of illness, vacation, and treatment, Olivia finally had two solid weeks. She even advanced to harder classes and sessions. For the first time, Olivia felt well enough to return to ballet at the Cape Conservatory, she did two barre warmups and helped critique their rehearsals for the upcoming Nutcracker Show. I give Olivia credit, she doesn’t shy away or get discouraged from these types of challenges. She put on a leotard and tights after losing all her muscle and asked her body to respond to moves that she knew would almost be impossible, moves that were once part of her daily routine. She commented, “It wasn’t pretty, but I am glad I went!”

Besides the obvious weight loss and weakness, Olivia’s biggest struggle is with her dry mouth (no saliva) and the Oral thrush which reappears because her immune system is constantly weakened by the chemo. The dry mouth makes it challenging to eat anything that isn’t moist. Even with a humidifier, her mouth and throat dry out and cause her to wake during the night. The ulcers cause her to lose her sense of taste and make it painful to eat, a serious problem when trying take on more calories. Ironically, her remedy is the freeze pops that I used to give the girls whenever they hurt themselves as small children.

On Friday, December 16th, we headed back to Dana Farber early for blood draw and a meeting with Dr. Thornton. The last chemo infusion of the year!! Her weight had increased to 120 pounds; we were satisfied and knew it would continue to go up. Returning home and sleeping in her own bed, after a long day, is just what the doctor ordered.

Olivia carried out another week of yoga classes and PT sessions on top of getting ready for Christmas and packing for a tropical family vacation. We received a wonderful, unexpected surprise from the Spanish National Honor Society at Barnstable High School. They chose to donate the funds that they raised from their Annual Auction Fundraiser to Olivia and her battle. It was the most funds they had raised to date. For that group to consider Olivia, was such an honor, especially because there wasn’t a direct connection between them. Many members including Caroline were linked to Olivia through friendships and other activities; Olivia studied Latin while attending BHS.

On Wednesday she had lunch at Crisp with friends Liam, Margot, Cate and Ashleigh. Olivia really looked forward to hearing about their semesters at school. That night, Brooke joined her at Chalkboard Studios for a “get together.” They met older interns and Olivia introduced Brooke to the working artists at the studio, including Jamie.

Week 36

At the beginning of 2016, I wanted to find a week when we were all available to take a family vacation. After a lot of research, I discovered a place we could stay in Turks and Caicos; our first trip as a family outside the US. The rates were reasonable over Christmas break, which really was the only time we would all be free of commitments. It was exciting finding direct flights from Boston. I immediately booked and paid for the entire trip, many months before Olivia’s diagnosis.

During Olivia’s treatment we were wondering if Dr. Thornton would even allow her to travel out of the country. At the beginning of her treatment, she made it clear that calendars needed to be cleared and there would be no vacations for the duration. Once we began to discuss week 36, in the long term conversation, we asked about traveling. At this point Olivia had been doing much better, her oncologist thought it was a good idea for all of us, especially after such an intense few months.

fullsizerender-41On Christmas Eve morning we arrived at Logan at 6 for an 8 o’clock flight. We walked through the doors and looked at the long line of people ahead of us checking in; I knew this would be an issue for Olivia. Standing in one place for long periods, is taxing on her body. Like always I started to look for places she could sit and wait for the line to move along. Caroline saved the day and located a wheelchair. Olivia had a letter from her doctor asking for special accommodations. She didn’t feel it was necessary and held onto it just in case. We tried to stay in line with the wheelchair, but they whisked us to the front of two very long lines. We passed what felt like a couple hundred people. Once we arrived at the gate, they offered us an upgrade on our seats and wanted us to board early. As great as it may sound, the seats that we were given were directly behind a very sick little boy, in first class. He was feverish, extremely congested and coughing regularly. It was obvious that his mother was distraught; traveling with a sick child is always stressful. As soon as possible I had Olivia and Caroline return to our original seats further back in the plane. Instead, it was Caroline that ended up with the cold on vacation.

We rented a car which gave us the freedom to explore the islands and experience different resorts, restaurants, and beaches. Craig did well driving on the left side of the road; Olivia even tried it. Monday the 26th was the annual Maskanoo Celebration on the island and everyone was there enjoying the vendors and music. I’m glad we were able to go, although we were unable to stay late for the live music. On the way back to the car we caught the parade of locals in their costumes as they approached the crowds downtown.

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On our vacation we took our time getting ready in the mornings, eating breakfast by a small pool just outside our villa. We chatted with our “butler,” Jason, and learned about the islands and the locals. Each day we chose different beaches along Grace Bay to relax, swim, play volleyball, and then ate lunch at the nearby resorts. The water was clear like a swimming pool, the sand bright white and one day a dolphin swam by us at the beach as if it was looking for someone. While sharing photos on Facebook it was suggested that we visit Taylor Bay Beach. We had that evening free and went for a drive. It was perfect timing for a beautiful sunset, so beautiful we went back for another prior to leaving the island.

Caroline is pursuing photography and has recently been chosen for an internship with a well known photographer from the area, Julia Cumes. Together Caroline and Olivia spent hours taking a myriad of photographs. I am pleased that Caroline has been able to document parts of Olivia’s journey. They work well together and used this week as a way for Caroline to get a jump start on a project for this internship.

On Wednesday we opted for a half day snorkeling cruise, it was a lot of fun. Craig, Olivia, and Caroline went snorkeling. Olivia enjoyed the swimming more than the snorkeling. I could tell she missed swimming and would have lifeguarded again last summer, if it hadn’t been for the cancer. We visited an island filled with iguanas and learned how to remove the meat from a Conch shell. The cruise provided a delicious Conch salad, sandwiches, punch, and festive music. Towards the end of the trip they opened a waterslide and people were jumping off the top deck of the boat; Caroline included.

I worried for weeks about how I would keep Olivia from burning in the hot sun. We were more than generous with the sunscreen, the large hats came in handy, and most often we were at resorts that offered umbrellas. I wasn’t sure how her skin would react to the sun after her long radiation treatment to her head and neck; it is the unknown that we worry about most. We were all glad she could relax and enjoy laying on the beach. She looks much better and feels much better with a little color, mainly freckles.

On our last day at the island we went to the Bight Reef and both Craig and Caroline snorkeled and saw almost as many fish as they had seen on the tour. The beach was quiet, not like the resort beaches. Olivia did some swimming and soaked up enough sun to get her through to summer. It was hard leaving such a beautiful island; we hope that someday we can return there together.

On New Years Eve, we arrived on the Cape just after 7PM. Olivia met up with several classmates from Barnstable to ring in the New Year. It had been a while since seeing these friends because they were all away at college.

Week 37-38

This past week, Olivia visited Jamie at Chalkboard Studios and started another painting. Returning to PT and yoga after a week off wasn’t easy, but reminded her how important it is to be consistent. Olivia called to set up her physical therapy in Wellesley, where she will continue with strength and conditioning once she returns to Babson.

Friday it was back to Dana Farber early for a blood draw and a meeting with NP Kathy. We were surprised to see Olivia’s weight had dropped back to 115 pounds. This was her LAST five day Irinoteacan chemo infusion; never did we think the time would pass this quickly. Even hours at the clinic flew for us, I don’t know if it was quality time that we got to spend together or if we were lost in the moment. Time stops for no one. We attended a friend’s wake Friday and funeral Saturday as a family. We are trying to understand death and dying together, we lost three friends to cancer in the past month. It wasn’t obvious that it was taking a toll on Olivia, but she did admit it made her wonder about her own future.

After day three of Olivia’s infusion and a major snowstorm, we returned to the Cape to find our driveway had already been plowed and our walkway shoveled. We still don’t know who thought of us, but we are grateful nonetheless. I took Olivia on Monday for day four and Craig took her for day five, her final Irinoteacan infusion. Tomorrow she will need her Neulasta Shot to boost her immune system and the rest of the week will be spent shopping and packing for her much anticipated return to college. She has four PT sessions left on the Cape and will do at least four yoga classes before leaving, she may even have time to visit the dance studio again. Hopefully, Olivia will complete her treatment on February 17th, followed up with scans and evaluations.

The best view comes after the hardest climb.

Continued Support – #OliviaStrong

We would like to thank Coach Cora Thompson and the Tufts Volleyball Team. Olivia and Caroline both attended several volleyball camps over the years at Tufts. She also considered attending Tufts and worked with Coach Thompson on her recruitment. Coach Thompson did not know until later that Olivia was in treatment, but when she found out she insisted on fundraising and making a donation with her team.  We were excited to find out that Tufts has been supporting childhood cancer with their own annual “Go 4 the Goal” fundraiser.

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