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 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.
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.)
The 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.
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 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.
On 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.
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 tylenol. 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