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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Getting Stronger

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.

Week 22

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.

img_9275Twenty-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 img_9313-1own 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.

Week 25

img_7725Columbus 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.

img_0624October 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

img_8330Unfortunately, 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.

img_0865Coach 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 img_0706as 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.

img_9348There 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 img_0518was 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.

Week 28

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….

http://www.capecodtimes.com/sports/20161025/night-of-yellow-raiders

Halfway Through Treatment

 

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 img_0306Hyannis 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.

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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.

Week 19

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.

fullsizerender-23We 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.

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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.

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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.

img_4251Olivia 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.

Colleen Kenney

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.”

Allie Charron

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.

Lexi Strauss

Babson College Student
Selling “Olivia Strong” Blue Bracelets at Babson College.

Danielle Derosier

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.

-Christopher Reeve

XO The Brodts

 

A Rollercoaster of Emotions

IMG_8966The 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.

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WEEK 15

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.

FullSizeRender-21.jpgOn 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.

WEEK 16

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.

IMG_8962 (1)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.

WEEK 17

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.

WEEK 18

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.

WEEK 19

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

 

 

Wonderful News

All of your positive thoughts and continuous prayers are working!! Olivia’s doctor at DF, Dr.Thorton, informed us today that her MRI and CT scans from Friday show no sign of tumors. She will finish the full 40 weeks of treatment through January. Currently, Olivia is dealing with several side affects from radiation to her head and neck. It will be a long road, but atleast she is moving in the right direction!! We are truly grateful to everyone who  reached out to us over these past few months.

XO The Brodt Family

Radiation Ends

13729154_902332446556382_2788708884826463715_nAt the end of week eleven we tried to keep things low key while anticipating the volleyball tournament on that following Sunday. Everyone was looking forward to seeing Olivia attend this event. None of us knew what to expect or what had gone on behind the scenes with Coach Turco and his crew of volunteers. Let it be known we never in our minds imagined that kind of support. It was truly heartwarming, all for the love of one.

Week 12

Olivia was still full of adrenaline on Monday after the tournament. I couldn’t believe how much energy she had, a definite “high” provided by her community. We were visited by Olivia’s friend Olivia and her mother Mary. Olivia was diagnosed with the same rare ARMS back when she was nineteen and was having scans done later that day. It was interesting to compare our similar experiences and many coincidences. After we met up with another one of Olivia’s friends, Casandra, for lunch at be good. Staying busy is what she loves and when friends want to meet up, she is all in. She said at one point, “Even though I am sick, I would still like to be a part of everything; friends, teams, school, sorority etc. I want to be in the loop!”

IMG_4708The combination of chemo and radiation knocked her back down midweek, also tired physically and emotionally from the tournament. The mucus fills her stomach during the night causing her to be nauseous and each morning driving into Dana Farber she vomited in the car. The following two days were very quiet. She slept late, slept in the hospital getting fluids and slept again back at the hotel. I sat in the cold, dark hotel room listening to her breathe, too afraid to leave her side. The only time she would wake up is if she needed the bathroom or was choking on mucus. It was very strange sitting there during these two afternoons in July, I had some extra time to reflect. Olivia barely drank any fluids and did not get in any nutrition. After making some interesting connections the week prior, the one time she wasn’t asleep, I found her on the phone with a healer. She was trying to make an appointment for me from her hospital bed. With all she has going on, she is sending emails and making calls on my behalf. I was both angry and proud of my amazing daughter.

This week following the tournament was the last week of radiation for Olivia a short week too, only Monday thru Thursday. For friends and visitors this week was very quiet and I was thankful for that. As a treat on our last night we stayed downtown at the Hotel Ames. We walked around Faneuil Hall and had dinner near Quincy Market. Olivia just spent two days sleeping, she was looking forward to a nice evening. AlIMG_1508though she is limited to what she can eat, she looks forward to the change of scenery. Unfortunately as we entered the restaurant her nose began to bleed, a radiation side affect. She said not to worry and headed to the ladies room. After ten minutes I checked on her and she couldn’t get it to stop bleeding. We stayed another ten minutes in the bathroom. Olivia was not going to sit on the bathroom floor all night, she stuffed a tissue in her nose and joined me at the table. That’s my girl! This restaurant was filled with well dressed, young adults and it didn’t phase her. This is who she is right now and she doesn’t get upset about what other’s might think or even say, that is #OliviaStrong! Not to mention, we had a good laugh.

Both the radiation and the chemo nurses were commenting on how well she did with the combination of treatments. They kept warning us that she was in the “thick of it!” Most patients that are given her regimen have needed more hospitalization. Her biggest battle is the mucusitis and the mouth sores from radiation. They also said that Olivia’s skin looked incredible for the 28 days of radiation she experienced.

Week 13/14

Dr. Tischler and his team warned that the two weeks following radiation tend to be the most difficult. Usually it takes the same length of the treatment (6 weeks for Olivia) to heal, with some longer or more permanent side affects. Olivia was given two chemo drugs on Monday the 18th with a blood transfusion for low red blood cell counts. Tuesday, I had to administer another white blood cell booster shot, because her white blood cell count was also low. Olivia wasn’t eating, but did get fluids regularly at home. Her emotions were high because she was getting frustrated with not feeling well and her weight dropped even more. Walking up and down stairs has now become difficult, she is not steady on her feIMG_5954et anymore; she compares herself to the scarecrow from the Wizard of Oz.

Getting out in the summer heat has not been easy, but Olivia is resilient. She made an effort to get out with friends and keep the summer traditions going like miniature golf and the “Greek Festival.” They also were able to attend “Proof.” A special play put on by her peers, who started a new theater group called Connecting the Dots. I believe she convinces herself that she is well enough to go to these special events, stubborn and not wanting to miss out on anything. It is a particular motivation that I admire in her.

Olivia wanted something as simple as a shower and couldn’t, as long as her port was accessed. Only after speaking with the in home nurse and making an appointment to get reaccessed on Friday, could she shower. Even that wasn’t as easy as we had hoped. The nurses were not familiar with Olivia’s port and this new needle was very uncomfortable. After just one bag of fluids, with an unusually slow drip, she decided on Saturday that she wanted it out. Without getting accessed she would no longer get IV fluids. We were all excited because she chose to start drinking the fluids that she needs to feel well. Which is a step in the right direction and indicates she is feeling a little stronger. Excited about her decision, she went to Mashpee Commons with her sister to meet her friend Brooke for a yoga class. Then they got creative at Color Me Mine. On Sunday she looked forward to joining a group of friends with her sister at Maggie’s house for Maggie’s birthday dinner.

IMG_4671Week fourteen was a recovery week, no treatment. Finally, a week at home with the entire family, it actually felt a little like summer. This past week Olivia’s appetite has increased immensely. She is making a huge effort to put weight back on. Drinking more, she found a new love for cranberry juice and seltzer water. Each day I have to ask what is happening because she always has something planned or in the works. Actually making an effort to clean her room is a definite sign of strength and determination, with several breaks of course. Last night she was able to attend Michael’s Championship Lacrosse Game with family and friends. Today she enjoyed a yoga class by herself, right here in Centerville. As a lover of routines, I think yoga will become part of hers for a while. In the afternoon Olivia went to the beach with Caroline and swam in the ocean for the first time this summer. It feels good to be home with everyone and have a little sense of normalcy, at least for the time being.

Tomorrow, Friday July 29th, Olivia gets her first set of scans since starting treatment. She needs to be at the hospital at six in the morning for a two hour MRI, followed by CT Scans at eleven. On Monday August 1st (Week 15) we meet with Dr. Thorton for evaluations.

Ongoing Community Support

13700089_902332473223046_3497983595987183184_n13615487_902332476556379_3306876142724612988_n13718613_902332566556370_1734296120906739563_nWalking into the gym at Barnstable High School for the #OliviaStrong Fast Fours Volleyball Tournament on July 10th was an extremely humbling experience. Coach Tom Turco had an idea and he was able to rally together several volunteers, parents, students, coaches, and players to come out for a fun day of volleyball to support Olivia and her fight against ARMS. We are forever grateful for his hard work and dedication to this event. With a total of 47 teams, volunteers, sponsors, and cheerleaders, there were roughly 300 people at this tournament. We were overwhelmed looking around at the different teams and trying to identify people from Olivia’s past. Trying to watch and support everyone was impossible on the seven courts he had set up. Everything moved fast and was executed with ease because of Tom and his crew. Every parent thinks their child is special, after this incredible experience it was evident we weren’t the only ones that thought that. Over the years Olivia made definite sacrifices and worked through challenges without looking back. Now she faces her biggest challenge, but not alone by any means. We admire the way she is all inclusive with her peers and her heart is always forgiving. It has come “full circle,” as they say.

These acts of kindness and generosity are ones you might expect from family. For us our family is BHS Volleyball, Beth Walsh Dance Center, Cape Conservatory, Babson College, Barnstable students, teachers and graduates, friends, neighbors, co-workers, acquaintances and people we were linked to over the years and may never even meet. These gifts come in all shapes and sizes; written, spiritual, comfort/entertainment, running/riding for awareness, nutritional, and financial. For those of you who have given repeatedly, there aren’t words to express our gratitude for such benevolence. Because of all of you, our day-to-day life is a little easier, putting (contagious) smiles on our faces and of course filling our hearts with love.

Just today Olivia recieved some very special messages from a couple of her peers at Babson College, students she hardly knew took the time to encourage her to keep fighting. She was also sent a very sweet video from our neighbor’s Montessori PreSchool singing “This little light of mine.” As I take a deep breath with a giant sigh of relief and a tear or two, I feel we are truly blessed. Please continue to reach out and “check-in,” we enjoy staying in touch and hearing from you.
All our love,
XO The Brodt Family

Day by Day

WEEK 9

The third week of radiation was difficult. Olivia was still dealing with thrush, a fungus that grows in your mouth and throat, it was limiting her food intake. Even with pain medication, it was very uncomfortable to swallow.  Caroline was able to join us for a few days this week because school was finished. Olivia left chemo on Monday, the 20th, after swallowing a variety of medications and getting two bags of fluids. She headed to radiation and they were able to take her in right away. Olivia came out ready to change, so I left the room for a minute.  When I returned she was vomiting in a trash can from the waiting sisters (1)room.  Luckily, Caroline was able to help her.  This was very unusual. We decided laying down immediately for radiation, after swallowing a bunch of medication, was not the best idea.  Her nurse Maureen, escorted her to the restroom and she continued to get sick.  All the while Dr. Tishler, her radiation oncologist, was close by waiting to have his weekly appointment with us. Magically, Olivia cleaned herself up and pulled herself together for the meeting.  Dr. Tishler was impressed with how well she handled it.  He commented on Olivia’s smile and said it was hard to believe she was just having issues.  Leaving the hospital, I realized that we forgot to pick up one of the medications from the pharmacy.  I ran back in and left the girls in the warm parking garage, another bad idea.  As we drove around the parking garage to leave, Olivia started vomiting again.  Then later at the hotel her body was rejecting everything.  Nausea medicines don’t work if you can’t keep them down.  It was violent and very difficult for a mother to watch.  A tough way to start the week.

The middle of the week was more of a recovery period, everything was sore.  She is constantly juggling medications and trying to stay on track. It was great to have Caroline, Michael, and Olivia’s friend Marissa come to visit her at Dana Farber from Northeastern. Wednesday evening some of Olivia’s other friends wanted to meet her and Caroline for dinner. I was worried because it would be a late night for her and she needed her rest. Cate, Margot and Liam made the trip from the Cape to meet at Cheesecake Factory at the Chestnut Hill Mall. This was past my usual bedtime, I became so tired, I just waited in the car. When I pulled up Olivia’s face was lit up. She was thanking them for making the trip and lifting her spirits. Then she got in the car and said she laughed a lot and had so much fun. This was perfect for her to break up the week and get her mind off the treatment, even for a couple hours.

illest (1)I was able to head back to the Cape early because Michael could be there for Olivia on Thursday. She had a special visitor that day, Emily Levy from PICCPerfect, a graduate of Babson. After starting her own company, she has a new project designing attire for patients that have ports implanted for infusion. They discussed her tops that would easily access the port for treatment and still look fashionable.

Maggie then joined Michael to end the week. Maggie drove Olivia back to the Cape on Friday. While stuck in Braintree traffic she suddenly became ill, requesting a bag. Maggie, with no way to pull over, grabbed her sister’s purse from the backseat of the car. Olivia was able to pull out a book before starting to vomit, lets just say the rest was not really salvageable. (Sorry Molly.)

FullSizeRender-17The fluids are really helping Olivia, someone compared her to a flower getting water. It is amazing how she perks up and stands up straight after getting her fluids. We were excited that we could get a visiting nurse to the house on the weekend to administer the fluids. Making the most of her weekends, Olivia planned her day and was going to hang out with friends poolside after getting fluids. Unfortunately, after three hours she was only able to get half a bag. She was late and upset about not getting the two bags that were ordered. Luckily, I was able to disconnect her so she could spend at least a little time with friends. Later that evening Olivia attended some graduation parties and she was able to reconnect with several old friends.

WEEK 10

It was week three of radiation and Olivia came out of treatment with an hourglass shaped burn on her face. They kept telling us that week three would be when the real changes book club (1)start. I was worried, it was obvious that there was something wrong with her face. All I could think is that each day from then on would be that much worse. By the end of the day her entire face was bright red. I try to get her to use a special moisturizer at least three times a day. We were happy to have Olivia’s friend Ashleigh visiting us in Boston for a couple of days. Tuesday was a busy day with radiation, a blood transfusion (for low red blood cell counts), fluids and a white cell booster shot (for low white blood cell counts). I hate giving it, but I know it is only going to help her. Unfortunately, the side affects are fatigue and bone pain that lasts for several days.

At this point Olivia has developed Mucusitis; oral mucusitis is inflammation and ulceration that occurs in the mouth, one of the debilitating complications of cancer treatment. She is constantly spitting in tissues and wiping the inside of her mouth. With Ashleigh visiting she was more determined to get out and do something fun. They were able get dinner and walk to the Fenway Movie Theater and enjoy “Finding Dory”.

Luckily, the next day the moisturizer seemed to be working, the redness faded. As the week progressed the burn was more on her lower neck and collar bone area. Michael came up Wednesday and after lunch Ashleigh and I returned to the Cape. The thrush was getting better, but she was still not eating because the mucus gets in the way. It fills her stomach making her feel full, until she gets nauseous and gets rid of it. She has a suitcase full of a dozen different oral rinses for the Thrush and the Mucusitis, it’s experimenting and finding out what works best for her.

Olivia’s Chi Omega sisters have been asking to meet with Olivia to have dinner for some time. They have not seen her since she left Babson in April. On Thursday a group of sisters made it easy and came to the hotel restaurant for a nice dinner with Olivia and Michael.

On Friday Craig drove up and met Michael at radiation. After getting fluids, Olivia had a successful meeting with a cardiologist. Her heart is okay, she just needs to slow down. She doesn’t understand slow, she does everything fast. I hope hearing it from someone other than her mother that she will finally slow down. The traffic was better than expected, the Friday before the big Fourth of July weekend. Olivia did experience another nose bleed in the car, with radiation to her sinuses five days in a row over several weeks, it’s expected. Olivia was up during the night several times, her body was eradicating the mucus often combined with a nosebleed.

FullSizeRender-18On Saturday we gave the visiting nurse idea another chance. We were able to get two bags of fluids in three hours, which is what we had expected the week before. Shannon, her friend and teammate from Babson was visiting for the weekend. Shannon, Olivia, and Maggie enjoyed a nice lunch on Main Street in Hyannis and then visited Olivia’s old boss at The Little Beach Gallery, Jen Villa. Keeping busy is what Olivia loves, she needs a change of scenery. She and Shannon joined us at a holiday barbecue, making an effort to see people that she has been unable to see regularly. Then Olivia and Michael were invited to Oyster Harbors Golf Club to view and enjoy their incredible fireworks display, easily the best on Cape Cod. A real treat for Olivia, giving her the opportunity to truly enjoy the holiday.

Sunday was a beautiful summer day, perfect for a picnic on the beach. Again the VNA quickly set up Olivia for two bags of fluids and taught Craig and I how to do it for the future. After fluids Olivia took Shannon to our favorite local beach, Long Beach. She brought her umbrella and did her best to recharge from the past week of treatment.

WEEK 11

We were looking forward to Monday off, staying on the Cape in the summer, it just makes sense. Olivia had a difficult night, up four times throwing up mucus. It was like she was getting punched in the stomach, a dozen times, each time. After explaining to Shannon that she had a bad night, I went to check on Olivia. She was groggy, very quiet, she asked for the fluids to be set up in her bedroom. As I was hooking her up I notice she was hot to the touch. Her temperature read 102+. I gave her tylenol and then spoke with her oncologist Dr. Thornton. A temperature is a major concern for cancer patients. She wanted us to go to the Emergency Room at Brigham and Women’s because of their affiliation with Dana Farber. Olivia also had appointments up there that next morning, but she didn’t think she would make it that far. She was very uncomfortable and needed treatment fast.

We decided to take her to Cape Cod Emergency and we were pleased to see Dr. Craig Cornwall. Olivia was given excellent care and her tests came back showing her white blood cell count was low. After speaking with Olivia’s oncologist, Dr. Cornwall called for a transport to Brigham and Women’s Hospital in Boston. She was feeling a lot better. Therefore, I drove up separately.

A specialist gave Olivia a quick evaluation and told us her fever was a result of a bacterial infection in her mouth from the mucusitis. It took a couple of hours but she was admitted to the hospital and moved to the Oncology Floor 7C. I noticed as they took her temperature that it was starting to spike, when it reached 101 I asked why they weren’t giving her hospitaltylenol. The nurse responded and said she needed the doctor’s orders. I said I would give it to her and the nurse got in my way and said “No you will not! She is inpatient now and will only get medications with doctors orders.” Who are you telling me I can’t give my own daughter medication that will make her more comfortable? I can’t remember the last time I was so furious. I immediately called Dr. Thorton and asked why she wanted us to go to a hospital that wouldn’t give Olivia the care she needed. Thankfully, she spoke to the nurse who paged the doctor for a third time and finally got the order to give Olivia tylenol (?). It took me a while to settle down. Thank heavens it was the end of the shift for that nurse. She tried to explain that tylenol may interfere with other tests that Olivia needed. Seriously, she would rather have my daughter moan while her eyes rolled to the back of her head and point or write because she can’t speak, than have tylenol interfere with her tests? It wasn’t easy, but I am proud of myself for sticking around. All the nurses that followed were very kind and very helpful. Olivia responded to the tylenol immediately and that fever did not return. She and I ended the night watching the Boston Pops on the television. Not exactly a Happy Fourth of July, 2016. There is something to be said about holidays, that seems to be when Olivia is at her worst.

We were told we would have a new team of Oncologists assigned to us because we were now at B&W and that they would be in at 8am Tuesday. I arrived and waited with Olivia for any information, nothing was happening. They were in the building at 8am, but not checking in with Olivia, which was a miscommunication. Michael and Maggie made the trip to be at the hospital with Olivia for the day.  I was so impressed when my daughter asked the nurse for her test results, instead of waiting for the doctor. Turns out her counts were normal, she bounced back!!

They moved her radiation appointment from 820am to 130pm. Dr. Tishler had his weekly meeting and you could tell he was concerned for Olivia. The feeding tube is still being addressed because of the lack of calorie intake on her part. She feels confident with balancing the rinses with the pain medication that she will be able to eat more and supplement with Ensure Enliven. After radiation we went back to her room because they were able to give her Vincristine, her chemo for that week. We were informed later by the doctors that her counts were normal and that she didn’t need to stay.

We stayed in a local hotel just to be safe and because it was late by the time we checked out of the hospital. The side affects from the treatment and the side affects from the medication to help with the treatment are a constant strain for Olivia. Clearly the worst she experienced yet was the irregularity caused by the pain medications. When you have pain caused by pain medications, life really doesn’t make sense. She wanted to go back to the hospital, it got that bad (9 days)! It took the entire evening and major patience on her part, but her system is finally back on track. Olivia’s weight dropped by five pounds in 24 hours, the extremes are brutal!!

Exhausted and sore that Wednesday was another recovery day. We did our normal routine with radiation and fluids, as well as checked in with the nurses. Then we went up to Waltham to check in at our hotel. Just after 1pm Olivia walked over to the bed climbed in and didn’t wake up until 430pm. She didn’t get out of the bed until 530pm to meet her friend Ashleigh, who came up from the Cape for dinner.

Today was more of the same, radiation and fluids. I was pleased that Michael and Maggie returned and were able to spend the night and keep Olivia company on Friday during her treatments. Having their help frees me to return home and gives Olivia time with her close friends.

Ongoing Community Support

Olivia started dancing at the Cape Conservatory the year they hired Jane Caputo. We would like to acknowledge Jane, the dancers, and their families, for decorating and selling those beautiful retired pointe shoes to fundraise for Olivia. Also, the Conservatory dedicated their Spring Dance Show, celebrating Olivia. There was a 50/50 raffle in her honor and the winner was extremely thoughtful and generous donating his winnings to our daughter. Thank you for your time and effort, we are deeply touched by all your support.

Olivia is a big fan of Mary Lou Martin’s Summer Workouts at BHS. As an athlete she did all she could to become stronger, these workouts became a summer routine for her. On the eve of the first class she actually asked me if she could go to watch, at 6am. Mary Lou decided to dedicate the first week of classes to Olivia. She charged her regular fee and a generous parent matched all her proceeds, which were then donated to Olivia’s fight against ARMS. Thank you for your generosity, guidance and support for Olivia.

Sunday from 10am to 2pm is the Olivia Strong Fast Fours Volleyball Tournament at Barnstable High School gym and fieldhouse. We are looking forward to such a wonderful event to support Olivia and her fight against cancer. Everyone is welcome, it is open to the public. If you aren’t playing still come out and support the teams that signed up to help Olivia in her fight!!  Please contact Tom Turco at capecodvolleyball @comcast.net if you have any questions. All the information can be found in the previous post.

The #OliviaStrong Barnstable High School and BHSVolleyball red bracelets will be available for purchase at the tournament. A special thanks to Colleen Kenney, a prior teammate, for her time and dedication to this particular fundraiser.

“Encourage, lift and strengthen one another. For the positive energy spread to one will be felt by us all.” Deborah Day

XO The Brodts