Meet Our Patients

Nolan Cyr - A Cancer Fighter with a Heart for Helping Others

“Nolan Cyr was 10 years old, and in the fourth grade when he developed some pain, and a limp in his left leg. Nolan was a super ice hockey player, and always worked hard at developing his craft. We (his parents) assumed he had pulled something in a game or practice when the limp persisted. Following a grueling tournament, the leg started to hurt him a bit more, so we made an appointment with a local orthopedic doctor.  Following x-rays, the doctor ordered an immediate MRI. Four days later, we found ourselves in Boston receiving news we could have never imagined. Nolan had cancer. More specifically, osteosarcoma, and a tumor was growing on the distal portion of his femur near his knee. We met with an orthopedic surgeon at Boston Children’s at the recommendation of his Orthopedic doctor in Maine. We had the option of receiving cancer treatment at Dana Farber, but knew immediately we would prefer to get treatment in Maine. We were referred to Dr. Aaron Weiss one week later, and the following week Nolan had his port implanted and he began treatment which included 18 rounds of 3 different types of chemotherapy, and a major limb salvage surgery at Boston Children’s ten weeks into treatment. 

When we first met Dr. Weiss, we knew we had made the right choice to receive treatment in Maine at the Maine Children’s Cancer Program. He had a sense of humor that Nolan, and ourselves appreciated, and seemed to be a very warm and caring individual.  Nolan had 10 weeks of treatment and then we traveled back to Boston Children’s Hospital for his surgery, during which they removed the diseased portion of his femur and implanted a prosthetic that has the capability to grow with him. A gear box at the knee acts as a growth plate and can be lengthened by a special machine with magnets at the surgeon’s office. He is somewhat of a bionic boy now!  Besides a large scar, and a limp that is being treated by twice weekly physical therapy, you’d never know today that Nolan had such a radical surgery.

Nolan then went back to Maine and began the last portion of treatment, which consisted of a total of 18 rounds of chemo until December of 2017. Nolan spent most of the 9 months he received treatment in the hospital at BBCH.  We interacted with not only his primary doctor, Aaron Weiss, but all of the doctors in the practice, and can’t say enough nice things about them. Nolan had a special bond with each, he discussed science and his desire to cure cancer with one, he teased one because of his choice of football teams, he talked about his make a wish with one, and he joked and played pranks on all of them, which included silly string, glitter, tiny hands, fake wounds, water guns and nerf guns.  And they all were such good sports about it.  They all knew how to make his smile brighter, even when he was feeling at his worst.

Halfway through his treatment Nolan raised money to fund a backpack program he started at BBCH called “Nolan’s Warrior Packs.” He wanted to help other kids diagnosed with cancer in Maine.  Within the bags, he put things that kept him busy, helped him through line draws, kept him comfortable, and made him happy.  His hope was that other kids could use those items too, and perhaps feel like someone else out there understood what they were going through, and he loved to see them smile! 

No one ever wants to be a part of MCCP. But, when it was necessary that we become a part of it, we feel blessed that we did. The providers and nurses did everything in their power to make this experience easier, and as positive as it could be. They allowed Nolan to be his own advocate. Nolan has an intense love of science that was only fostered, and grew greater during his treatment. “No secrets” was his motto from the start. And even at 10 years old, they respected that desire of his to be included in all discussions.  Nolan learned all of his medicines, and how long they go over the pump. He knows about normal blood counts, different types of cancer, how to take vital signs…the list goes on and on.  He had to grow up quickly, but we feel it made him a stronger person in the process.  We appreciate that the oncologist’s recognized his desire to learn, and that they allowed him to be, and feel in control of what was happening to his body.

Today, Nolan is 4 months cancer free, and back to his old self, minus one half of a nasty tumorous femur. He has most recently expressed interest in becoming a pediatric oncologist when he grows up. He wants to go to the school his primary surgeon teaches at (Harvard) and work with his favorite doctors and nurses from Maine Children's Cancer Program. Nolan said "the most important thing is that I get to help kids do what I did, and I can give them hope."

Thank you Angela Cyr, for sharing your story.

 
Clinic News

A Rise in Sickle Cell Seen at MCCP



While pediatric cancer care comprises a large component of our efforts at MCCP, there are a number of hematologic disorders that similarly require specialized expertise and commitment from our providers. 
One such condition, Sickle Cell Disease (SCD), is a genetically transmitted red blood cell disorder.   People with SCD have abnormal hemoglobin in their red blood cells. Hemoglobin is vital for carrying oxygen around the body. Remarkably, in SCD, a single point mutation on the hemoglobin gene in one’s DNA leads to numerous acute and chronic health complications. SCD is most commonly found in people of African ancestry. It is the most common single gene disorder in African-Americans with 1 in 375 afflicted with the disease (two copies of the defective gene) and 1 in 12 (8%) with sickle cell trait or carrier status (one copy of the defective gene). When the body becomes stressed (e.g. illness, strenuous activity, extreme cold), patients with SCD can suffer from severe bone pain leading to prolonged hospitalization for pain control. This leads to significant school and work absences for patients and parents. Other serious short and long-term complications include stroke, life-threatening infection due to a compromised immune system, kidney failure, heart disease, blindness, and bone death requiring joint replacement. This underscores the importance of comprehensive, preventative health maintenance programs for these patients.

Prior to 2015, Maine Children’s Cancer Program was caring for just 15 patients throughout the entire state with SCD. Since that time, 17 new patients have entered our program. Almost all of these patients are from families seeking asylum in the United States from certain African countries ravaged by violence (e.g Angola, Democratic Republic of the Congo). As part of the new arrival screening process, all asylum seekers are screened for SCD increasing detection rates. Reflective of our current political climate and growing African community in our state, 9 of our new patients have arrived in the past 6 months.  Currently, we are caring for 30 patients with sickle cell disease. This number has doubled in just the past 3 years. Of these 30 patients, only 5 speak English well enough to not require an interpreter during their visits. Most of our families are on Medicaid and require transportation arrangements to get to and from appointments. It is not uncommon for our families to be living in shelters with little clothing and food. It does not appear that the influx of patients and families in need will be slowing down anytime soon. 

At MCCP, we are fortunate to have a dedicated sickle cell treatment team including a hematologist (Aaron Weiss), nurse (Shannon Cole) and social worker (Dee-Dee Hogan).
 
We hope that through increased awareness, efforts to bolster MCCP’s sickle cell program and assist these patients and families can continue to grow.


 

Star Supporter

Portland Sunrise Rotary Club Celebrates it's 20th Year in Support of MCCP


Portland Sunrise Rotary is known for its exceptional dedication to service, both in our community and around the world. 
Their club has helped build a bridge in Nigeria that allows children in a rural village to attend school, helped provide safe access to clean water in rural Western China, and provided crutches and mobility equipment to polio survivors in Africa. Closer to home, they provided new winter coats for students in need at Portland High School and Presumpscot Elementary School, built new benches around the Portland’s Back Cove Trail, cooked meals for families with sick children at the local Ronald MacDonald House, and raised over $327,000.00 through their annual Rotary Social (now known as Party with a Purpose) to help support Maine Children’s Cancer Program.

The Portland Sunrise Rotary Club is compiled of many big-hearted community members doing their part to brighten the world. One of those Rotarians, Dan Smith, is also an active MCCP Board Member and comments on being a part of these two groups:
“As a Rotarian and an MCCP Board member I’ve had a unique inside perspective into how both organizations work together to support a common cause.  The Rotary International motto is “Service Above Self.” That motto would be entirely appropriate for any of the MCCP Board members as well.  Both organizations strive to make the world a better place for those in need, especially children through our service and fundraising efforts.  Rotary International has a global mission to eradicate polio by immunizing kids around the world, and the MCCP Board member’s mission is to help raise funds so that local kids undergoing treatment at MCCP, and their families, can get the best treatment possible.  The collaborative efforts over the past 20 years between the MCCP Board and Portland Sunrise Rotary Club Rotary has shown me that “service above self” is not just a motto – it’s a way of life for all of us. Being a member of both organizations doubles the happiness and pride I feel every time we help these kids.”

Another Rotarian all-star, Jim Schmidt, goes above and beyond to support our Maine Children’s Cancer Program kiddos by volunteering his time (and airplane) to fly children and their families from Maine to other hospitals for specialized procedures or treatments that force them to leave home. Jim comments: “In other volunteer work I do I see the struggle that families dealing with childhood cancer must endure.  Donating time and money to helping Portland Sunrise Rotary support Maine Children’s Cancer Program allows me to express my gratitude to both organizations.  We are all so fortunate to live in this country with so many resources that I feel when we are able we should give back as much as we can to help those in need.”

Sue MacArthur, this year’s Party with a Purpose event chair, has the unique perspective of being involved with this special event during the very first event as well as the 20th anniversary. Sue notes: “I was a young Rotarian when the first “wine social” was held 20 years ago and was on the planning committee at that point.  When I returned to Portland two years ago the club had just held the 18th event of what we now know as “Party with a Purpose” and I was astounded at how far it had come.  I’m honored to be the chair for this 20th anniversary and hope that we can celebrate by breaking our fundraising record and by providing significant support to MCCP.”

Tickets are still available for the 20
th annual Party with a Purpose and can be purchased here. The evening is truly special from start to finish and we have some incredible silent and live auction items available this year – a week’s stay in Tuscany, an African safari, a weekend getaway to Ogunquit and a private dinner in the Barrel Room for 14 at Maine Craft Distillery – just to name a few. We hope you join us, along with the Portland Sunrise Rotary Club, to further our united mission in helping children and making the world a better place.
  

 

 

Strike Out Cancer in Kids

Meet Kinzie Frey, Our 2018 Slugger Kid! 


In July of 2015, after months of vague symptoms, 6 ½ year old Kinzie Frey was sent for an ultrasound and received the devastating diagnosis of stage IV high risk neuroblastoma. Kinzie’s cancer required treatment that is referred to as the “kitchen sink” because it takes a little bit of everything to get her through to recovery.

Instead of getting ready to embark on the first grade, Kinzie was enduring vicious rounds of chemo and learning how to take care of her central line and kidney drain alongside her parents. Her initial road to recovery began with two lengthy, complicated surgeries, multiple rounds of chemo and two stem cell transplants. One month after her second transplant, Kinzie was looking and feeling extremely fragile. At 7 years old, she was down to about 27 pounds and had to walk on her tiptoes due to muscle wasting. A simple task of walking upstairs was complete torture for her.

With determination, Kinzie battled back, step by painful step, with the help of family, friends and all of the incredible healthcare providers in her circle. She slowly started gaining weight and building back muscle. As soon as her body was able to handle it, she endured 12 rounds of radiation, which after what she had previously been through, was a breeze.

The next step in treatment was 5 rounds of antibody, which brought along plenty of impediments. Kinzie suffered extremely high fevers, nerve pain, loss of appetite, and fluid retention. It was during the first round that a new complication presented itself, a late complication of transplant. Her blood cells started breaking down and she suffered high blood pressure and kidney damage. This new development made antibody very tricky and only 3 rounds were able to be completed.

While everyone else was preparing for Halloween in 2016, Kinzie had just finished her third round of antibody and had caught a common cold. In just a few hours after getting home from the hospital, she started having trouble breathing and was rushed back and needed heavy breathing support in the pediatric ICU. She barely pulled through.

After about two more months of ups and downs, she was diagnosed with left sided heart failure. Luckily, as soon as her treatment for the heart failure started, she quickly got better, began feeling stronger and started acting more like her energetic self, the side of her we hadn’t seen in what felt like a very long time.

Kinzie is now nine years old. Her heart has healed to be of normal size and normal function. Her kidneys have also improved greatly and aside from having a port and receiving medication every other week to keep her stable, Kinzie is just like any other normal kid! She's an active second grader who loves to swim, ride her bike, play in her treehouse, read and participate in sports. She loves to cuddle on the couch with her parents and six siblings. She hates princesses and loves to get dirty! Her favorite color is blue and her favorite animal is a pig! She's sassy, determined and loves with all her heart. She's always helping others and thanks to MCCP and the work of others she can keep on doing so for a long time!

You can join this year’s "friendly rivalry" between Kinzie’s Green Team and Slugger’s Gold Team by making a
donation that is dedicated to Striking Out Cancer in Kids!

Thank you Holly Frey-Bosse, for sharing your story.

 

 

Learn More & Get Involved

Download the Summer 2017 MCCP News.
Download the Winter 2017 MCCP News.
Download the Summer 2016 MCCP News.
To learn more or support the Maine Children’s Cancer Program, click here.
Interested in becoming an MCCP volunteer? Contact Ashton Hunter-Sildve at AHunterSil@mmc.org