Starting Radiation

In combination with the five days of (Irin) chemotherapy, the days were long that first week of radiation. We used the flexibility that was made available to us in the radiation department. Even if they set up appointments for you, they recommend dropping in before or after chemotherapy to see if there are windows available. Unlike chemo, their department has a lot of cancelations and last minute rescheduling. This can open up appointments and most don’t last very long. We were spoiled that first week, we did not show up for any of Olivia’s scheduled appointments. We went in when it was convenient and she was in and out in a matter of minutes.

On the weekend, Olivia was able to go to shopping with Caroline, but was noticing more and more that being on her feet for any length of time was difficult. On Sunday, Olivia and her friends walked along Scorton’s Creek, taking breaks to sit and rest, and that evening Michael and Olivia enjoyed a movie at the theater. These kind of activities are what healthy people take for granted. We are all thrilled when Olivia can add any kind of normalcy to her weekends.

IMG_2500-2Last week we anxiously waited to see if she would experience similar chemo side affects that she had over Memorial Day weekend, following that same course. With the help of the Dr. Thorton and her team, we were trying everything possible to avoid another episode. Unfortunately, not only was she experiencing the fatigue and nausea, her stomach took a turn for the worse. It was still a slight improvement from Memorial Day weekend. This was the second of seven similar chemo treatments that she will be getting over the forty weeks. We now have a lot more information and we know what works for Olivia, we will be ready for the third, fourth, fifth, sixth and seventh.

While at Dana Farber these past two weeks, Olivia made it a priority to get fluids regularly. Fluids take the edge off, combating the dehydration that intensifies the nausea and lightheadedness. It is also good for the areas that are getting radiation.  Unfortunately, we had a lot of afternoon appointments that second week of radiation and because they were busy they couldn’t move them any earlier. Tuesday was the only day last week that she did not get any fluids and as a result Wednesday morning Olivia woke up dehydrated. She couldn’t handle the idea of sitting completely still on that table, literally locked down in a mask for 20 minutes. They had her wait on a stretcher for an hour and a half then they rolled the stretcher in the radiation room, sliding her on and then off the radiation table. It was hard to imagine that she was planning on attending a concert just a few hours later. Caroline was with us that day, she had no idea that Olivia purchased tickets to a concert for that evening. It was a surprise and it was happening!!

FullSizeRender-15 (1)In the end Olivia was able to enjoy the Ellie Goulding concert with Caroline and their close friends. The concert was at 7 and she was unhooked from the IV at 5:30, leaving just enough time for getting dressed and eating dinner. It was a surprise Olivia had planned for Caroline weeks earlier and all involved made it a special night. Fortunately for me, Michael and Maggie were able to assist with Olivia’s care again this week, relieving me so that I could come home and tend to other things.

As far as side affects for radiation, almost immediately she experienced a dry mouth.  We bought everything available over the counter, as well as, tried using prescriptions medications; it is a constant battle. With the radiation, Olivia’s head, face and neck will become dry and have the look of a sunburn, maybe even more severe. The same goes for the inside of her mouth and throat.  By the end of week two, she noticed it was harder to swallow, the sores in her throat were eventually causing her agony, comparing it to swallowing shards of glass! She spits into a tissue rather than swallowing her own saliva.  How does one sleep or eat anything when they can’t swallow their own saliva? Dr. Tishler, her radiation oncologist, warned us that this would happen. As a parent, you always pray that maybe your child’s case would be different. Baby food, smoothies, and ice pops are going to be a major part of Olivia’s diet for the next couple of months. A feeding tube isn’t out of the question either, Dr. Thorton is all for it. Dr. Tishler feels as though her support group is strong enough, she is constantly being monitored and he believes that she will be able to sustain the pain to get enough nutrients. Time will tell, she has already lost 20 pounds from her usual weight.

IMG_3664Most who know our daughter Olivia know that she is a doer. On many occasions I have referred to her as a machine. She spent most of her life making sacrifices to reach a certain goal, that she had set for herself. Over scheduling had become the norm for her, as much as it gave us anxiety, she always had a solution. Even with leaving early or arriving late, she always gave 110%, to make up for it. Sleeping and eating became an inconvenience for her, stopping or interrupting her progress. Olivia slept hard and ate on the run. I always prayed for some kind of balance for her. Just this past spring volleyball season she worked hard, along side her Babson teammates and their trainer, lifting weights to build muscles and to become a stronger athlete. Olivia was in her best physical shape, so we thought. She was proud of her efforts and had fun showing off her tiny biceps.

In just a few months she is at the opposite end of the spectrum, trying to eat little meals throughout the day in between naps. Anything else is that day’s highlight. Two months have past since we started this battle, Olivia shed tears twice in front of me, on the day she found out she was sick and on the day of her surgery, which was her first day of treatment. She has yet to complain or feel sorry for herself! I am blown away, as usual, by her strength and determination. I know she keeps things from me, because she doesn’t want to worry me. Olivia’s heart is so big, she hopes to somehow protect me from her pain.

We are anticipating an exciting event following week five of radiation. On July 10th Coach Tom Turco and the Barnstable High School’s Girls Volleyball Team together organized a Fast Fours Volleyball Tournament to assist Olivia in her fight agains ARMS. Please join us, if not to play to cheer on the people that came out to support our daughter in the sport that she loves. Depending how Olivia is feeling on that particular day, will decide if she can attend.

Olivia Strong
Fast Fours Volleyball Tournament
Date: Sunday July 10, 2016
Place: Barnstable High School Gym and Field House
Time: 10:00 AM-2:00 PM
Fee: $25 per player/$100 per team

Rules: Each team of four can have up to two men on the team. Men cannot contact the ball above the height of the net in front of the attack line.
Format: The format will be a Fast Fours tournament that will allow teams to be reseeded as the day progresses.
_________________________________________________________________

REGISTRATION FORM
Team Name ___________________________________
Team Representative ___________________________________
FEE: $25 per player or $100 per team
Teams must have four players. Teams of 5 must rotate or sub players in.
Make checks out to Olivia Brodt and mail to:
Olivia Strong VB Tournament
PO Box 303
S. Harwich MA 02661
Questions please contact Tom Turco capecodvolleyball@comcast.net
MIAA rules state that no more than two Barnstable candidates (remaining eligibility) can be on the court at any one time.

24883When it was suggested that a “Meal Train” be set up to bring meals to our home, I have to be honest, I was apprehensive. At that point I figured getting take out wouldn’t be that hard, if we didn’t have time to prepare anything. After two months of having meals delivered, fully cooked and ready to eat, I don’t know why I would even question it. These meals are a godsend! Thank you, from the bottom of our hearts, to the dozens of families that have participated.  Driving home late from Boston we don’t have to stop because we know there is food there waiting for us, or if some of us are staying in Boston we know the others are set for dinner. It gives us time to rest and recharge on a Sunday afternoon, time that we wouldn’t have if we needed to shop for the week or prepare dinner. Nothing goes to waste, often there are close friends visiting and we have enough to share!! Seriously, the generosity from the people in this community is nothing short of a miracle. I thank God every night for the love and support we are receiving and we want YOU to know that is what keeps us going.

Once you choose hope, anything’s possible. ~Christopher Reeve

XO The Brodts

Reality sets in…

We have always led very busy lives, working multiple jobs and having our children involved in multiple activities throughout the year.  Planning months in advance was absolutely necessary; spontaneous was not a word you would use to describe our lifestyle.  When we were given Olivia’s schedule for the forty weeks of treatment, I took out my calendar and my sharpie and double checked each week and the specific chemo that would be administered that week. Let’s just say over the last several weeks, we are all learning to be more flexible.  FullSizeRender-1When experiencing a cancer fight first hand, you find out quickly that from one week to the next the scheduling could change slightly or dramatically.   The first major change was postponing the radiation by three weeks, due to the positive results of the chemo treatments.

During our meeting with Dr. Thorton on week four, she informed us (as if we already knew) that the particular drug, Irinotecan, is administered consecutively over the course of five days.  We all looked at each other with question, what did that mean exactly?  Over forty weeks of treatment, Olivia will receive seven weeks of Irinotecan, Monday through Friday, not just Thursdays like we originally planned.  The harsh reality of this treatment was setting in, almost 30 more days of chemo.

While we regrouped after given this new set of information, Olivia’s friends and I began to decide who would be available and when over the next four days.  This was a big weekend.  Ever since Olivia’s first dance show, at two years old, we looked forward to watching our daughters perform in the Beth Walsh Dance Centre’s Spring Show.  photoAt this point, it has become a tradition.  This would be Caroline’s (Olivia’s sister) first year performing without Olivia at her side.  To stay in Boston for these next few days was not an option.  With the support of Olivia’s boyfriend, Michael and her girlfriends Maggie, Margot, and Ashleigh, we were all able to take turns bringing Olivia back up to Boston for chemo and home again to watch Caroline perform twice in “Off to Neverland.” Not only has BWDC been working hard to fundraise for Olivia by selling the light blue “Dancer Against Cancer” bracelets, but also they brought awareness by dedicating the show to Olivia and her fight against ARMS.  We were all thrilled that she felt well enough to attend.

On the following Monday, Olivia was experiencing more nausea than usual; the two hour drive in from the Cape, for the fifth day of chemo in a row, was torture.  When we arrived she had had enough.  That afternoon she said she couldn’t handle another two hour drive home and asked if we could stay overnight.  Over the next several days she would suffer from severe nausea. We decided it was best for her to stay put and try to rest.  We found a place near Fenway and one night she felt well enough to attend her first Red Sox game.  After week five, they tried to address the nausea with a new medication. Unfortunately, it did not agree with Olivia.

Memorial Day weekend will always be a reminder of how Olivia suffered, her worst experience yet.  Olivia laid in bed in the fetal position for three days, she could barely lift her head to drink water and take her medications.  Eating was out of the question.  Sunday evening we spoke with Dr. Thorton and she recommended taking a steroid that we had on hand. It worked, Olivia was up in the middle of the night feeling human again, craving food and full of energy.  The steroid kept her on track and allowed her to move around the house.  By Wednesday, without any medication, she was (almost) her old self.  She was busy with a yoga class, lunch with her friend Brooke and later playing/watching volleyball with Caroline, Michael and her old teammates Hannah and Stephanie.IMG_7816

Today is week six, infusion went well, Olivia’s muscles are still sore from repeatedly being sick over the holiday weekend.  They recommend that Olivia plan on coming into the hospital two to three times a week for fluids.  Keeping her hydrated will help to control some of the side affects and may help to avoid another bad episode.

Looking forward is difficult because next week starts her 6 weeks (M-F) of radiation treatments.  We will be staying in the area during the week and heading back to the Cape on the weekends. Alongside the first week of radiation, Olivia will get her second five-day infusion of Irinotecan.  Now aware of the symptoms, we hope to stay ahead of them and keep Olivia comfortable.  After discussing the schedule today, we were told that instead of Thursdays it would make more sense to move her (non-Irinotecan) chemo treatments to Mondays.  The original calendar is no longer legible, and I am definitely switching out my calendar and sharpie for a dry erase board and marker.

“Faith is taking the first step even when you don’t see the whole staircase. “
Martin Luther King, Jr.

XO The Brodts

Moving Forward with Treatment

 

Olivia slowly improved after the first week.  There has been a lot of uncertainty because we have not experienced anything like this before.  Following the surgeries, she did notice her heart was racing and it was hard to take a deep breath.  This went on for a few days.  We thought maybe it was a side affect from the Lupron, which can cause chest pains amongst other things.  When we returned the following Thursday, Dr. Thorton insisted on doing a CT scan to rule out a Pulmonary Aneurysm.  After the initial shock, we were relieved to find out that the CT scan came back negative and Olivia was able to continue with treatment.

FullSizeRender-6The last two weeks of chemotherapy haven’t been as aggressive as the first.  Olivia has been in great spirits and reconnecting with a lot of friends returning home from college.  Also, with the aid of social media, Olivia was able to meet and have lunch with a young woman on the Cape that recently finished her treatment for the same Alveolar Rhabdomyosarcoma.  With a rare disease like this, we thought it would be impossible to find someone who was given the same diagnosis and just a short time ago. Her family contacted us and insisted on helping in any way they could; we felt as though it was a sign from above.  They are an incredible resource for our family moving forward.

The weight of school work has been a major burden for Olivia because she left a month early to seek medical care.  She is still trying to wrap up assignments, as well as, her finals at Babson College.  Once our daughter can finally put these requirements behind her, she can totally focus on her health and well being.

FullSizeRender-10On Thursday May 12th, Olivia was also accompanied by two close friends for her chemotherapy.  They tell you it is going to be a short appointment, but with the travel time, it still ends up being a long day.  After her labs, we were told Olivia’s white blood cell count was extremely low and she would need to be extra careful with her weakened immune system.  However, we were relieved that they allowed us to move forward with her treatment.

We were ready to start radiation on the 16th for six weeks, but oddly weren’t given a schedule for the following week.  After a night of no sleep and emails to various doctors, we were finally informed early on the 13th.  Because the Chemotherapy is working, they postponed radiation for three weeks.  We are thrilled that her treatment has made some progress, and with a little creative scheduling, we will adjust to the new regimen.

Approaching the third week of chemotherapy, Olivia noticed her hair was falling out.  After only a few days, she had reached the point of being ready to shave her head.  Michael offered to help while Olivia’s close friend Maggie assisted with creating hairstyles and lightening the mood.  It turned out to be a fun afternoon and was in Olivia’s words “liberating.”  Her sister Caroline used it as an opportunity to document the process. She is feeling positive with moving forward with her RMS journey.

IMG_7686The past several weeks have been a total rush of emotions.  Scared, we immediately reached out to family, friends and neighbors for support and advice.  After going public with Olivia’s battle on social media, the community’s response exploded.  We have heard from old and new friends about their own experiences with battling cancer.  They shared with us resources and have given us the sense of hope that we desperately needed.  Before we could even process the diagnosis there were prayers dedicated, fundraisers organized, a Meal Train set up and a gofundme page devoted to supporting our daughter and her fight against ARMS.  The love and support that Olivia is receiving from all the different people she has touched over the years is extraordinary.  The thoughtful prayers, positive energy, and community spirit is lifting us up and giving us strength to help her fight ARMS head on.

“We can’t always choose the music life plays for us, but we can choose how we dance to it.”

XO The Brodts

Hearing the News

After weeks of anxiety, on April 21st our 19 year old daughter, Olivia, was given her diagnosis.  She has Alveolar Rhabdomyosarcoma (ARMS), a rare cancer made up of cells that normally develop in the skeletal muscles of children and young adults, only 250 cases a year in the US. The next day we met with our oncologist Dr. Thorton from the Sarcoma Department at Dana Farber Cancer Institute.  The CT and PET scans show Olivia’s Sarcoma is IMG_0984located in her head and neck only.  Her doctor is projecting 40 weeks of treatment with a combination of both Chemotherapy and Radiation.

The shock and sense of surrealism was and is numbing, but we felt we needed to inform family, friends and the community.  The original diagnosis back on April 11th was Hodgkin’s Lymphoma, but later was changed to Rhabdomyosarcoma (RMS). Each one of us is receiving heartfelt messages of support.  When Olivia opens a special text or email, from all the people she has touched over the years, her face lights up filled with love and hope.  Then she shares with us her award winning smile and our faith is restored.

Olivia went back and forth to school for a while, she was missing Babson and her friends. Her boyfriend, Michael, was able to take her to the CHI OMEGA Spring Formal that she was anticipating.  She was also able to finish the year with her volleyball team and play in their spring tournament.  That same evening Olivia performed with the Babson Dance Ensemble in their spring show “Get Wild.” The support from her peers has been outstanding, I am so impressed with all her friends. She is definitely feeling better moving forward with some answers.

Mornings were difficult, Olivia had major headaches as she approached treatment.  On Tuesday the 26th we had a few extra hours, (after her 2 hr MRI) we waited to see if we could squeeze in some appointments and somehow it happen. The team of doctors were finally on board with speeding things up. After a impromptu meeting with the doctor, they were able to schedule her labs very early on Thursday with two minor surgeries followed by a full day of Chemo. Her doctor asked Pediatrics from Children’s Hospital to get involved in discussing her treatment because she is borderline at 19 and because RMS is common in children.  A huge sigh of relief; the MRI showed no evidence of the tumor spreading to her brain.

On Thursday we were also able to meet with the Radiation Department.  They want her to do six weeks of Radiation, five days a week, starting on week four of her treatment.  They also informed Olivia that the tumor in her sinuses has damaged some nerve endings, which is why she hasn’t been able to smell and that may be permanent.  After a long day, this was hard to hear.

Thursday came and we arrived at Dana Farber at 6:30 for lab work.  Olivia then rushed to Brigham and Women’s to have her port implanted for the Chemo.  She decided to take part in a study for Ovarian Tissue Freezing, that was the second surgery.  Unfortunately, there was an overlap of appointments.  In recovery Olivia watched the clock in front of her move from 11 to 2:30 knowing she was to be over at Dana Farber at noon for treatment.  If you know Olivia, she is timely, and even after surgery she was still frustrated that she was late.IMG_0912

Leaving the rushed atmosphere at Brigham and Women’s Day Surgery we then crossed the bridge to Dana Farber where the atmosphere immediately decompressed.  Floor six in the Yawkey Building is the Sarcoma Floor, it is also the floor for Olivia’s Chemotherapy .  Because it was late, they almost reconsidered starting her treatment.  Together we convinced the doctors that she needed it and could handle it, at 8:30 we headed back to the Cape.

Olivia is improving each day with much needed bedrest.  We are all seriously relieved that the tumor has decreased since the initial Chemotherapy and has taken some of the pressure away from her head.  Now we are focused on the nausea and finding a new routine for the next few months.

Thank you for all the support.  Please keep the positive energy and prayers coming, we appreciate each and every one!!

XO The Brodts