Over the past several weeks Olivia has been getting stronger mentally and physically. She is determined to get back to Babson and continue with her college studies. We are extremely proud of her current independent mindset. She pushed past some difficult weeks emotionally, all the while, separating from her closest friends.
Excited about the future, we recently met with the administration at Babson College. They were very accommodating while planning for her transition back to campus and classes in late January. The elimination of the chemo drug, Vincristine, from Olivia’s treatment has spread out her other chemo treatments. As a result, these weeks have been racing by. The volleyball season will end, the holidays will come, and before we know it we will be helping her move in for the spring semester.
On Monday September 19, 2016, Olivia had a full day of chemo with follow-up appointments. It was a long day, but we were able to return home. At this point, checking in on her the mornings following her chemo treatments became exciting for me. She is able to tolerate the chemo much better than she had just a few weeks earlier. Also, the further she gets away from radiation (in July) the better she feels. Her body is healing. A few people even commented and were excited to see that her hair was finally growing in. What they didn’t know was that it was temporary. With the upcoming treatments she would sadly lose what had grown in so nicely.
Twenty-four hours following the end of each chemo infusion Olivia needs a white blood cell booster injection, which has now become routine. We were pleased she felt well enough after her chemo to go to her Gentle Yoga class on both Tuesday and Thursday this week. She also kept her appointments for her first week of Physical Therapy, which were on Wednesday and Friday. I went with her to these appointments and it was difficult seeing her struggle, but somehow she didn’t get discouraged. Her body had been through hell and back; it was finally time to rebuild what she had lost. In the evenings, Olivia supported her sister Caroline and the Barnstable Volleyball team as they beat both Dartmouth and Brockton.
Nurse Kerry of the Sarcoma Unit gave Patriots tickets to Olivia, a few weeks back. They were donated by a local season ticket holder. On Thursday, September 22nd, Olivia and Caroline sat in the Patriots End Zone during the historic win against the Houston Texans. It was an incredible experience that they will never forget!
Week 23 Non-Chemo
Olivia had a strange sharp pain shooting down the back of her leg. With some research, she discovered it was Sciatica. She spoke to her physical therapist at one of her two appointments that week. TC said that it was probably because she had lost so much weight and muscle, that she was sitting directly on the nerve itself. With the help of PT and yoga, Olivia learned how to stretch it out and found if she laid down on the opposite side the pain would subside.
This week there were two away volleyball matches for Barnstable Volleyball at Medfield and Newton North. Olivia was feeling great and joined us for both. Barnstable went to five games with NN and lost the fifth game by two points. It was a very competitive match and their only loss this season. It brought back some memories for Olivia and the rivalry that has gone on between these two teams for several years.
On Saturday October 1st, Olivia drove to UMass Boston to see some of her old teammates from Barnstable, who now play for their team. She was also able to show support for her own Babson Volleyball team who had a separate match at that UMass location. Caroline and Jack spent the day with Olivia and later her friend, Brooke, joined them for an Italian dinner. After dinner, they all went together to the James Bay Concert at the Blue Hills Bank Pavilion. A big THANK YOU to BHS Student Council for selling the #OliviaStrong keychains to raise the money and purchase these tickets.
Week 24 Non-Chemo
More of the same this week, Olivia had her two physical therapy appointments and on alternate days attended yoga classes at Centerville Yoga. I noticed her energy level was improving. She is waking up at the same time everyday, getting into a routine. Olivia has also started to enjoy reading a few of the books that were given to her over the past several months.
Barnstable had three volleyball matches this week: Falmouth, Bridgewater-Raynham, and Dennis-Yarmouth – all successful. These games fill the evenings for Olivia, helping to pass the time that she is not at Babson. She is taking advantage of the opportunity to enjoy these games as a spectator, instead of as a player like she has for so many years.
On Friday, October 7th, Olivia decided to support the BHS Football team on the road with Caroline and friends Michaela and Delaney. Saturday morning, Olivia reconnected with her painting mentor James Wolf. He was kind enough to invite Olivia back to Chalkboard Studios to get her painting again. She sketched out a self portrait of a photo that Caroline took back in June and will slowly add watercolor. That evening, we took Olivia out to Columbo’s for an early birthday dinner. The following week of treatment happened to fall on her birthday. We stayed up in Boston for convenience and we didn’t get together, as a family, until the end of the week.
It being a long weekend, many high school friends were home from college. Olivia was looking forward to meeting Sam, Maddie, and Cate at the Daily Paper for breakfast on Sunday. After breakfast, we drove to Springfield, as a family, for the annual VolleyHall Classic Tournament. It is a tradition to eat at the Red Rose on the evening prior to the tournament, this was our fifth year.
Columbus Day is one of the few days Dana Farber is closed, so Olivia spent the day with us, cheering on her sister Caroline and her volleyball team. Later after a long day, they walked away as champions! Last time BHS won this tournament Olivia was also junior, like Caroline. We didn’t get back to the Cape until late Monday night and needed to prepare to travel early on Tuesday.
After blood work on Tuesday, October 11th, Olivia had a follow-up appointment with Dr. Lee, in neurology. They discussed her neuropathy and want to continue with physical therapy for obvious reasons. It was a long day of chemo, but Olivia was determined to drive to Tufts to watch and support her Babson Volleyball team.
Wednesday, Olivia’s infusion was in the afternoon, therefore we could take our time and enjoy breakfast. I contacted Olivia’s close friends and teammates from Babson, Shannon and Sarah. I asked if they were available to meet us. Even though we were staying close to Babson, she didn’t want to contact anyone because they were all busy preparing for mid-terms. Her two friends insisted on surprising Olivia at breakfast and they came with colorful gift bags for her to open, knowing the next day was her birthday. Shannon and Sarah also created a project called Open Arms to help tell Olivia’s story and raise money for her fight against ARMS. In addition to sharing stories about ARMS, their website sells coffee mugs and stickers with Olivia’s favorite quote, “We can’t always choose the music life plays for us, but we can choose how we dance to it.” Check it out! – openarmscompany.weebly.com
That afternoon, Mighty Well (Picc Perfect) sent a representative, a recent Babson graduate, to visit Olivia with prototypes for their new shirts. They are creating shirts for patients who get infusions regularly through their ports. Maria modeled the shirt and asked Olivia several questions to get Olivia’s opinion. We were thrilled to learn that Mighty Well won a grant of $250,000 from the Babson Breakaway Challenge. It is a competition to promote gender parity in the VC industry which awards high potential, women lead businesses. Now they look forward to growing their company into a global business that will help chronic illness patients around the world.
October 13th was Olivia’s twentieth birthday. I dropped her in the lobby that morning and told her I would meet her on floor six. I had hoped to find some helium to fill special balloons that Caroline purchased in advance. After visiting three different hospitals and their gift shops, I found one that was willing to fill Olivia’s balloons. She joked how young women like to post photos of themselves holding the numbers to show how old they are on their birthdays. It took me a while to get back to her. The night before I purchased a dozen cupcakes at “Sweet,” for the nurses to help celebrate. Olivia’s friend Ashleigh made it a priority to visit. She ended up taking a train and a bus to get to Dana Farber from Providence. They enjoyed a short visit and then Ashleigh had to get back for her afternoon classes.
It was incredible the difference in Olivia’s appetite this week during this five day course of treatment. Not only was she alert, but also hungry!! This was the complete opposite of her last five day course where she slept constantly and refused foods and liquids because of nausea. Olivia even inquired with the nurse to see if she was giving her the right chemo drug, or maybe a different dosage. There was no doubt in my mind that she was going into this treatment stronger both physically and mentally. The nutrition during the chemo kept Olivia from getting overly nauseous and weak. It was wonderful to watch her handle something that had knocked her down in the past. Would this be the new norm? Homesick after three nights in the hotel we drove back to the Cape on Friday.
Olivia had one more day of chemo on Saturday this week, to make up for the Columbus Day holiday. We were arriving at the DF parking garage and I heard my phone ringing, which is unusual. It was a call from Caroline who had just cut open the back of her hand with a boxcutter, while cutting cardboard letters for BHS’s homecoming that evening. More than anything, I could hear the fear in her voice, “MOM, I am at the emergency room with Dad. I cut my hand!” Two children, two hospitals, I have to admit I was overwhelmed and desperately needed a clone. With time, everything settled down and Caroline got her hand stitched up and Olivia recieved her chemo for the day. Before we headed back to the Cape, girlfriends Cate and Alicia stopped in at DF for a quick visit which helped make the day just a little brighter.
On Sunday, Olivia went to breakfast with Grace, another friend from high school. Olivia has become a regular at the Daily Paper, meeting friends for breakfast and a little girl time.
Weeks 26 Non-Chemo
Unfortunately, the thrush had returned in Olivia’s mouth. The soars can be caused by either radiation or chemotherapy, this time it was the chemo. She needs to be regular with her medicated rinse that helps prevent the thrush. Rinsing her mouth is inconvenient, it tastes bad, and for that reason it keeps returning. I worry that with the regular soars and dry mouth, it impossible for her to get any calories or nutrition.
Her two physical therapy appointments and two yoga classes each week continued, as well as, two volleyball wins, one against Andover and the other an exciting game against Notre Dame Academy. There was a wonderful Banner Ceremony prior to the start of the Andover game. Barnstable Volleyball was hanging a new 1000 banner listing and honoring all the athletes that reached 1000, whether it be kills, digs, assists etc. Olivia was a part of the small group being honored that night for reaching 1000 assists, while playing for Tom Turco. She currently holds the record for assists in one season, but Caroline is quickly approaching those numbers.
Coach Neely and the Babson College Volleyball team had an “Olivia Strong” match on October 21st, with T-shirt and a bracelet fundraisers for Olivia. That was the day we met with administration about Olivia’s return to school in January. I am glad we were all there to watch Babson beat Middlebury. After the match ended, we went to dinner in the pouring rain at “The Local” Restaurant in Wellesley. We ran into many of Olivia’s teammates with their friends and families, who had the same idea.
Early Saturday, Caroline and Craig left for another all day volleyball tournament in Medfield. I wanted to let Olivia rest, so we joined them later on. It was a long day, but in the end they were the champions yet again, which makes it all worth it! Honestly, as much as Olivia enjoys playing volleyball, she loves to encourage her sister. It is a treat to have her at these games, not only for Caroline. The team sees Olivia as a role model and they are motivated by her attitude and determination, especially with her illness. Leaving the tournament hungry we stopped at Lorenzo’s in Middleboro for some dinner. Fortunately, my brother, Eric, was in the area and was able to join us for appetizers. It was great to see him.
Olivia’s friend Brooke was home for the weekend and she and Olivia met for breakfast on Sunday. When she came home she said “I love Brooke,” and then continued, “I mentioned pumpkin carving, and she said I hate carving pumpkins!!” Then Olivia asked me, “Mom, why can’t everyone be that honest?” Later that afternoon she returned to Chalkboard Studios to work on her watercolor portrait.
Week 27 Non-Chemo
Finally, Olivia has been regular with the medicated rinse for the thrush. It took a few days, but it is gone and her appetite is back. She is working on her balance and strength in both physical therapy and yoga, two appointments and classes this week, as well. TC, her therapist is seeing results and challenging Olivia a little more each visit. Not too long ago, she was walking extremely slow. It was like walking along side an elderly person. We would slow down and wait, staying close incase she was lightheaded or dizzy, but not anymore! I noticed how quickly she has improved and now she is back walking at full speed.
There were two volleyball matches this week, both wins against Medfield and Westborough. Coach Turco, the Barnstable Volleyball team, and the Boosters chose to do a “Dig Yellow” night to support Olivia and bring awareness to Sarcoma Cancers. This was instead of the usual “Dig Pink” night that they do in October for Breast Cancer. It was a very special night and the show of support was overwhelming, to say the least. There is something that is hard to describe in that gym during those matches. The fans, families, and players are bonded together like nothing I have ever experienced. It is truly a volleyball family, and even after you graduate you are always considered a part of this extended family. Use the link below to see the Cape Cod Times article.
Friday Olivia ate breakfast with her friend Cate and talked about all the fun Halloween parties that were planned for the weekend and of course what everyone would be wearing. I could tell Olivia wanted to be a part of the fun, especially because Halloween is her favorite holiday. It was unfortunate that she could not participate this year with all her friends away at school.
Saturday morning we drove to Dana Farber to have her second set of scans done, which means she is two thirds of the way through her treatment. We returned to the Cape to see Beth Walsh Dance Centre Competition Team and their Company Concert. These were the dances that they will be performing in competition this coming season. We all loved the show and the new choreography; I could tell both girls miss dance. This is the first year, in six or seven years, that my girls will not be competing. Caroline will be returning to dance after the volleyball season and Olivia is hoping to drop in on local classes as she gets a little stronger. Eventually, she will return to the Babson Dance Ensemble.
We ended the week with a long walk along Centerville River and back along Long Beach, it was unseasonably warm. It reminded me of the walks I took with my mother many years ago. My mother and I would walk through the woods at our land in Middleboro, or hiked the trails at Blue Hills in Canton. It was not originally part of the plan, but I am thankful for this time I have had with Olivia, as much as I know she needs to be back with her peers. Soon after our walk Olivia rushed out to meet Jamie at Chalkboard Studios to continue painting. I admire my daughters strength and resilience. The girls spent the night carving pumpkins with Jack. We are no longer taking anything for granted. I am elated that Olivia feels well enough to keep herself busy and do some of the things she loves.
We were back at Dana Farber on Halloween for the scan results and a full day of chemo. The weight that is lifted when you hear your child’s doctor say, “Your scans were clean!” As you can imagine, it is like no other weight you will ever feel.
To be continued….