Honored Skipper

Meet Our 2017 Honored Skipper: Belle Bradley

Belle - 2017 HS

"In December 2012, Belle became sick with what we thought was a horrible stomach bug. Everyone was sick with it so naturally when she began vomiting I thought she had it too. Only her "stomach bug" lingered and she took on a grayish green complexion.

We brought Belle to the pediatrician "just to make sure everything was ok" on Sunday December 30, 2012. I thought for sure they'd send us home. After all, what can a doctor possibly do to treat the stomach bug?

Our pediatrician took one look at her and knew something was very wrong though never let us see his worry. Her body was covered in petechiae, tiny round spots due to bleeding under the skin, a sign that her platelets were dangerously low. Only we didn't notice and chocked up her large bruises to being an active 2.5yr old. The doctor didn't want to alarm us but recommended we head to Hasbro Children's Hospital "for fluids" because Belle was likely dehydrated.

When we arrived we were immediately put into a triage room bypassing at least 10 other kids in the waiting room. I assumed our doctor called ahead and this was just great service but I was wrong. The nurses and doctors immediately knew our situation was critical. Belle's bruising had become significantly worse in just the short time since leaving the pediatricians office.

They ran an IV and did some bloodwork, all the while keeping us calm. A young doctor came in and said her bloodwork came back abnormal and listed off a few different possibilities including leukemia. It wasn't until an ultrasound of her kidneys confirmed the diagnosis no parent should ever hear, "Your child has cancer (Acute Lymphoblastic Leukemia)".

Belle was admitted for a period of almost 8weeks and chemotherapy began that day. Her kidneys were near failure and doctors and nurses scrambled to bring her platelet counts back up. Within 10days her hair began to fall out. Steroids which were a key component in her protocol caused mood changes, a ravenous appetite, significant weight gain and the infamous "moon face" most cancer kids have. She looked like she had cancer now and we couldn't ignore it.

For over 2 years Belle received weekly chemotherapy, sedated lumbar punctures to deliver chemotherapy to her spinal fluid, bone marrow biopsies, blood transfusions, etc. Chemotherapy used to treat her cancer limited her mobility and prevented her from walking for a period of time. Once she regained strength, steroids caused bone breaks in her tibia and femur leaving her wheelchair bound. Despite all the setbacks, she persevered and smiled.

Belle finished chemotherapy in February 2015 and remains in remission. Today she is 6 years old and lives her life like every other little girl. She has long blond curly hair, loves to dance and tumble, swim, sing and draw.
She doesn't remember much from the beginning of her treatment and I'm so grateful for that. Those memories are my cross to bear."

--Melissa Thompson


 

 

2016 Honored Skipper Hannah Wertens!

Hannah is a 12-year-old Portsmouth girl whose ongoing battle against leukemia is well-known locally. Hannah is excited to meet all of you at the 2016 Regatta!

Hannah

I was diagnosed 6 weeks before my 3rd birthday.  I got seizures from the chemo.  I had 2 years of treatment and was in remission for 10 months, then on my wish trip to Disney, I relapsed.  I could not get into remission so I needed a bone marrow transplant.  I spent about 8 months in the hospital and found a donor and then a year on strict isolation, no one could come in and I could only go to the doctors with a mask ? nowhere else for a year. 

I have many side effects from treatment as I have had my lifetime limit of radiation.  I have specialists that I see from neurology to podiatry and everywhere in between.  I continue to take medicines every day.  I am a two-time cancer survivor and I often tell people about it to spread awareness. 

Every September in my school, I make cupcakes, give out stickers and pins and give a speech about cancer awareness.  Every spring, I collect toys, stickers and cute band aids to give to Hasbro red pod cancer floor. I love to act, sing and dance.  And I want to give money to find a cure for cancer. 

I really, really love Selena Gomez.  I am her biggest fan and I really, really want to meet her one day.  I want to tell people you can do anything but I really hope no one has to go through all the treatment because it is hard and the side effects are awful.


 

2015 Honored Skipper Brayden Maggio Seaton!

 

Brayden and Gianna

In  the spring of 2011, Brayden was a happy, energetic and curious 2 year old boy, as it should be. He was attending daycare full-time, learning something new everyday, as it should be. Suddenly, he became very lethargic, uninterested and began having terrible night sweats. No matter how long he slept, was always tired. This, of course, led to a doctor visit, to which they explained that these things happen and he is probably fighting off a cold, but to just keep an eye on it. A week later, his daycare called and said that since the moment he was dropped off he had only slept on his cot, even while his friends around him made noise and played. Thinking he could still be fighting off a sickness, there was no real reason to take him to the doctors again, until motherly and grandmotherly instinct took over and the decision was made to take him again. That instinct led to the doctors noticing a rapid heart beat and along with all the other effects from the previous weeks, decided that blood work was in order, hoping it was just an iron deficiency. A phone call that night confirmed the need for him to be brought to Hasbro Children's Hospital and meet with the on-call Oncologist. After more blood was taken and what seemed like hours, we got the news no parent will ever want to hear, Brayden has cancer. At that time it did not matter that his type of cancer, A.L.L. Acute Lymphoblastic Leukemia, was a commonly treatable form of cancer and its survival rate is between 80 and 90% for children of his age. Just hearing that news was devastating. When we were finally ready, they got us to our room and ordered a blood transfusion for Brayden. At around 4am he received his first transfusion.. When he awoke, he already seemed different; he had some color back and a little bit of an appetite. This was just the beginning of our 2 year protocol, starting with a 28-day residency at Hasbro.

Those 28 days taught us how to be strong, stay positive and remain upbeat. We, of course, did not want him to see us upset, as he was the one hooked up to IVs, getting chemotherapy, steroids and fluids pumped into him. He was quite an amazing little guy, getting poked and prodded every 2 hours, having a portacath surgically implanted, having spinal taps, he never really stopped smiling. He always wanted to go to the playroom or on days his counts were too low to leave his room, have the playroom brought to him.  He showed adult-sized resiliency, and I don't think I will ever know if he got it from us, the wonderful doctors and nurses on Floor 5 or all the amazing visitors and family members who visited us on a daily basis now matter what was happening in their lives. Maybe it was a combination of all of those things that helped us get through the most difficult 28 days in our lives.

In June, we received news that Brayden was in remission, and we could finally go home and start outpatient chemotherapy. This was exciting news, but also scary, leaving the sterile hospital for the outside world. The Tomorrow Fund Clinic at Hasbro is where we met the people that became such a big part of our lives for 2 years. These doctors, nurses, secretaries and volunteers became like a second family to us.  After 7 months of bi-weekly visits, which turned into monthly visits, a little normalcy returned to our lives. However, we noticed him having trouble walking and he complained of pain in his feet and legs. It was determined that an ankle brace needed to be worn to help heal the bones that were deteriorating due to the heavy doses of chemo. An MRI, showed  that he developed AVN (Avascular Necrosis), a condition that results from a significant loss of blood supply to an area of bone tissue.  Slowly, his bones healed and we were beginning to see the light at the end of the tunnel, with his treatment schedules slowly coming to an end.

Towards the end of treatment, Brayden turning 5 years old meant we needed to sign him up for Kindergarten!  We were a little apprehensive, since he was just getting off treatment in June and still had a portacath in place, but decided that it was the best decision for him.  He started Kindergarten in September, and had his portocath surgically removed in October.  Things were looking up and we couldn?t be more proud of the little man he was becoming.

Currently, Brayden is almost done with 1st grade with a  spectacular report cards, and is growing emotionally and physically every day.  Looking at him now, you would never know the tough journey he experienced at such a young, frail age.  He is playing baseball and soccer and the words "cancer" and "chemo" are becoming less and less a part of our vocabulary.

We will always remember what he went through with a very heavy heart, and the fear of relapse may never leave us, but all we can do is cherish the life he has now and be grateful for the wonderful team of doctors and nurses who have helped him along the way!


 


2014 Honored Skipper: Alexander Falzone

alex falzone

Our son Alex,  was a happy and energetic pre-schooler who had just celebrated his 4th birthday with a Super Hero Party surrounded by family and friends.  It was a few nights later, after a morning of skating and an afternoon of apple picking, that he woke up in pain in his pelvis.  One day later, he had a fever and was having trouble walking.  It was then that we took him to Hasbro Children's Hospital. 

After an MRI and a bone marrow biopsy we received the unimaginable, heartbreaking news that our child had cancer.  He was diagnosed with Acute Lymphoblastic Leukemia ("ALL") on October 9, 2012 - a day that will be ingrained in our memories forever.  Alex had surgery the following day to have his port implanted and treatment began immediately.  After 28 days in the hospital, Alex reached remission.  We were sent home for a week before returning for another five days in the hospital for high dose methotrexate. 

Since that time, Alex's treatment has been outpatient at the Tomorrow Fund Clinic at Hasbro.  As part of his protocol, Alex has endured 60 shots in his legs over a 30 week period, weekly chemotherapy doses through his port, weekly blood draws from his port and lumbar punctures (spinal taps) every 9 weeks to extract fluid for testing and to administer chemotherapy in his spinal fluid all while we administer a mix of chemotherapy drugs and steroids orally over three week periods at home.  He will continue his protocol of weekly visits to clinic, three week cycles and lumbar punctures until November 13, 2014.

While Alex's diagnosis and 2-plus year treatment protocol has been life-altering for our entire family, we understand and truly appreciate that his protocol is much less toxic and his prognosis exponentially better than it would have been if he were diagnosed 20 years ago, which is thanks in large part to the blood cancer research funded by LLS and its donors - like all of you.  For that, we are extremely grateful and thank you from the bottom of our collective hearts.

Chris, Lynn, Gianna, Olivia and Alex


2013 Honored Skippers: Cameron Cyr and Emma Katzen 

Cameron1cameron2

 

Dear Leukemia Cup Regatta Participants:

We would like to thank you from the bottom of our hearts for your dedication to helping in the fight against blood cancers. Our son, Cameron, was chosen to be this year's Honored Skipper and we could not be more thrilled. Cameron was diagnosed on November 28, 2011, with Chronic Myelogenous Leukemia. The average age of someone with CML is 52 years old. An 8 year old being diagnosed with CML was very rare. There is neither rhyme nor reason for him to have gotten this form of leukemia.

We followed the oncologist's recommendation and Cameron began his treatment which consisted of taking an oral chemotherapy drug called Gleevec which he would have to take every day for the rest of his life - unless researcher's discover a shot or something that would keep the Philadelphia chromosome at bay. Without the support of the Lymphoma and Leukemia Society none of this would have been possible. LLS funded the research that lead to Gleevec and today Cameron is in remission and playing hockey, his favorite sport. Cameron is incredibly strong young man who does not give up. He is our hero and idol. November 28, 2011 changed our lives forever. We do not take time for granted and enjoy every minute we have with each other.

We thank you for all you do to fundraise and donate to LLS. Who knows, your dollar could have been the dollar that created the drug that saved Cameron's life.

Thank you doesn't seem like enough.

With gratitude,
Stephannie & Gregory Cyr
 

emmaemma

When doctors told Judd Katzen the best-case scenario facing his daughter Emma was leukemia, he couldn't believe what he was hearing "I thought they had made a mistake," he said. "I thought they couldn't be saying that."

It was a Friday night in early February 2012 at Hasbro Children's Hospital Emergency Room. Prior to that day, Emma's life was that of a normal seventh-grader. A tennis player with an interest in photography, she finished her fourth year of cheerleading with the local Pop Warner squad last fall.

But for Emma and her family life took an abrupt change of course. A day before she was admitted to the hospital, Emma's mom, Christin, said her daughter came home early from school with a fever. Emma had just finished a cycle of antibiotics for an ear infection, something Mrs. Katzen described as "kind of unusual," and the school nurse said she didn't like her color. Mrs. Katzen said she could tell her daughter wasn't feeling well but it seemed more like the flu than anything alarming. Mr. Katzen said he started to believe it was something a bit more severe after spending Friday morning with Emma. She was drinking excessively, said Mr. Katzen, and her sense of balance was not right.
"It was just something different," Mr. Katzen said. "I knew it wasn't good."

The two went to see Emma's lifelong pediatrician that afternoon. Much like the school nurse, said Mrs. Katzen, the doctor didn't like Emma's color. At first glance, it seemed like Emma might be suffering from hepatitis. The doctor recommended she go to the hospital, where it didn't take long for the severity of Emma's situation to become apparent.
About a half-hour after walking in alongside her father, Mr. Katzen said his daughter was in and out of consciousness and was heading toward total organ failure.

Mrs. Katzen's described those hours as something akin to an out-of-body experience. She said it was "surreal" and she kept waiting for the doctor who was going to bring the good news. The unrelenting flow of negative test results, Mrs. Katzen said, was like being on the wrong end of a pop-up punching bag that would not stop. "There were no white blood cells. There was no immune system," Mr. Katzen said. "Every measurement that determines someone's health was at the critical low end."

The information that night came from a variety of sources, the result of multiple specialists working with Emma. The leukemia cells in Emma's body turned up during blood work. It was a diagnosis that Mr. and Mrs. Katzen thought had to be a mistake.

It was during this time that the Katzen's experienced the first outpouring of community support that hasn't ceased to this day. People began showing up at the hospital, said Mrs. Katzen. Some were friends, some were strangers. Some brought a cup of coffee, others just came to offer a hug.

"You know how they say it takes a village to raise a child? It takes a village to save a child and this is definitely the village to be in ... I don't know how to say thank you. I don't even know how to express what everyone has done."

Story told by Judd and Christin Katzen, Emma's Parents.


2011 Honored Skipper: Maya Spadano

MayaS

On December 26, 2010, the Spadano Family received devastating news. Their 2 and a half year old daughter Maya was diagnosed with Leukemia. The diagnosis came after weeks of wondering and worrying why this typically vibrant and energetic two year old could not bounce back from the many fevers and so called viruses wrecking havoc on her sweet little system. After a Christmas filled with Maya unable to leave her mommy's arms, white as a ghost and barely talking (she usually never stops), Sherri and Bob took it upon themselves to take her into Hasbro Children's Hospital to get some answers. We all hoped and prayed that she was simply anemic and that they would give her some iron and send her on her way. Instead, all of our worst nightmares came true!

Currently, Maya is going through treatment and her entire family is positive about the future. Maya also has a 7 year old sister who has been beside her through it all.

The Spandano's are truly an amazing family and we cannot wait for you to meet them all on June 1st and 2nd.

 

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