At 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.
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!”
The 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. Although 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.
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 feet 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.
Week 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
Walking 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