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