Every minute of every day a child in Western New York is fighting a battle you could not envision. Please take time to get to know local heroes! Read about their diagnoses and detailed warrior stories in their own words and the words of their parents.
Sophia
Sophia
Sophia’s Story:
My Sweet Sophia
Williamsville, NY
July of 2021 Sophia Benintende, a healthy and energetic 7-year-old was about to start 3rd grade at Country Parkway in Williamsville, when she began to feel a pain in her side. We felt a lump on Sophias rib cage where we believed she pulled a muscle trying to master the monkey bars. Sophia saw her pediatrician, who sent her for a sonogram of the area the following day, which led to a CT, which shockingly revealed tumors on her rib cage and lungs.
In a whirlwind few days, Sophia was diagnosed with Ewing’s Sarcoma, a very rare and aggressive cancer. She immediately began a rigorous treatment plan which included 14 rounds of chemo at Roswell and 31 rounds of radiation at Sloan Kettering Memorial in NYC. During this time Sophia had more ER trips than can be counted including transfusions, fevers, and the list goes on. But in spring of 2022, Sophia was cancer free.
To be safe, she continued daily trips to Roswell for maintenance chemo throughout this summer as well as an additional home administrators chemo. She was so excited to finish at the end of August 2022. This is when we decided we had to start giving back. This is when Sophia The Fierce INC started to evolve. Sophia wanted to make kids smile the way she did, goimg to Bills Games, Camping, four wheeling. She just wanted to help others because that is who she is.
Heartbreakingly, the week of what was to be her last treatment, her scans showed that she relapsed as new tumors in her lung and surrounding her heart were discovered. With limited treatment options remaining, Sophia immediately began trial out of Cleveland Clinic. This trial was not working as hoped, and they quickly shifted to another trial treatment. Fluid started to accumulate in her lungs eventuallybthat cleared up. A few months later fluid accumulated around her heart she had a Paracardial window put in .
Tumors started to grow more showed up in her spine leading to emergency radiation, Sophia lost mobility. Just before we were going to start another trial chemo they found fluid in Sophias abdomen and sent us home saying there is nothing more that they can do.
We decided we weren't giving up. We then contacted a Naturalpath we had her on a regimen requiring her to take 81 supplements a day. It seemed to be effective as the fluid around her abdomen seemed to dissappear. However within a few weeks it was back. We saw Sophia was declining. She had to be put on aroumd the clock oxygen and couldn't get out of bed. Everything we were trying wasent working. On May 9th 2023 at 9 years old Sophia gained her Angel Wings . She didn't want to go she still wanted to fight.
This is why we need more research we need more than 4% for children like Sophia who faught so hard who weren't ready to give up who's spirit wanted to keep fighting but their bodies simply wouldn't let them. This is why apart of Sophia The Fierces Mission will go directly towards Pediatric Cancer research because our kids deserve more than 4%.
Abbie was diagnosed January 16th with Alveolar Rhabdomyosarcoma. It is a rare form of cancer that attacks the muscle tissue. Approximately 400-500 cases are diagnosed nationwide, representing an incidence rate of 1 per million, with a poor prognosis. It was an incredibly hard day because it was my sister’s birthday, who ironically happens to also be her “other unofficial” pediatric oncologist.
Abbie was immediately hospitalized after her first visit with Dr. Twist due to elevated bloodwork indicating a problem with her kidney function. It was after her scans that we learned the cancer, originating in her left calf, had metastasized to a larger tumor in her abdomen that was causing these issues with her kidney.
She had surgery on January 19th to place a mediport in her right side chest and began chemotherapy that same day. From there, much was a blur, but the plan was to start Abbie on a protocol of chemotherapy that included 3 drugs to be administered every 3 weeks in an overnight hospital environment. There were many complications, including both Abbie and me being diagnosed with Covid-19, which placed us in isolation for almost 3 months.
The Drs. eventually readjusted her dosage because of the complications with the chemotherapy drugs. Abbie also had such a traumatic experience from the side effects causing mucositis, that she refused to eat, ending in our decision to place a g-tube in her for nutrition to keep her stable enough to administer the drugs.
After roughly 3 months in the hospital, we were finally on the right track for a routine schedule of her chemotherapy. The therapy included 14 rounds of the drug cocktails that ended in December 2022, 2 rounds of radiation, one consisting of 33 proton treatments at Roswell, and the other of 28 photon treatments in NYC.
Abbie had her first scans on December 7th after the protocol was completed; the tumors were gone! She rang the bell on January 19th, 2023! Abbie now receives a different cocktail of chemotherapy drugs for maintenance that has not yet been determined how long she will remain on. Abbie’s second scans in April continued to indicate she is still stable; she will have her third scans in July.
Abbie has been left with much damage to the left calf muscle, exacerbated by the chemotherapy. She receives PT twice weekly but may need surgical intervention. Her left kidney has minimal to no function.
Abbie is doing well with much love and support from so many! We are all making this journey with her support system with all opportunities to live each day as the best day ever!
Her greatest love is her family and dogs, then I would probably have to say her buddy, Josh Allen. She also has a love for superheroes, her first love being Batman, then Spiderman and lastly The Hulk. Abbie loves, loves, loves to swim, play nerf guns, ride her monster car, and generally being outside especially at campgrounds! She shines best when she gets an opportunity to sing and dance for you!
Her first “different” ability of Down Syndrome has challenges but has not stopped Abbie from enjoying life and being a super awesome kiddo; she’s as genuine as they get!
East Amherst NY “Andre, known as Andre the Warrior, was diagnosed with Stage 4 Wilms’ Tumor when he was four years old. The name Andre means “Warrior” – which is part of why we chose that name, and later the mentality Andre developed throughout treatment. We learned early on in his cancer journey that if Andre set his mind to something, he could overcome it.
Andre overcame having his left kidney and ureter removed, in addition to nine months of chemotherapy and radiation treatment. His love of life, his love for people, and his amazing attitude is what has given hope to us, as well as many others. Our family leaned into faith throughout treatment and that is also where our hope that Andre would be fully healed was derived from. Andre is now seven years old and has no evidence of disease.
We would like other people to know that childhood cancer affects the whole family emotionally, physically, psychologically, spiritually, and financially. Our hope is that the existing gaps with childhood cancer being underfunded for research, clinical trials, and programming are closed through increased awareness.”
On July 23rd, 2018, I woke up ready to enjoy a summer day with my kids. I was excited to give Carson, my 5 month old, pears for the first time. I was looking forward to watching my older kids swim. My biggest worry at 10:00am that morning was if we’d be able to leave swim lessons on time to get Carson home for his nap.
When he woke up from his nap, on that normal summer day, he was miserable. He was so irritable that nothing could calm him. He wouldn’t put weight on his left leg…so I assumed it was asleep. I was actually relieved when he vomited because I figured he’d start to feel better, but that wasn’t the case. It wasn’t long before we were headed to urgent care hoping for fluids. We thought he had a stomach bug.
Urgent care ran some tests and was concerned that he might have intussusception (a telescoped bowel), so they sent us to Oishei for further testing. I was worried, but not yet terrified.
ER tests didn’t show any indication of a bowel issue. Everything, except Carson’s demeanor, looked good that night. Without any answers yet, they admitted us so they could run more tests.
It wasn’t until the next day that I remembered that he wouldn’t put weight on his left leg after his nap. Watching his right leg move, without his left, as he cried in his hospital crib reminded me of that moment. With this new symptom, everything changed. An MRI was ordered. This is when I started to feel the fear, but I kept reminding myself that a tumor would be extremely rare. We thought he might have had a stroke.
I’ll never forget the look on everyone’s face when we were told it’s a tumor. I can’t imagine what mine looked like. I had 1,000 questions and could barely ask any of them. I mostly listened. He needed to be sedated, he needed to be intubated, he needed another MRI, he needed brain surgery, he needed an oncologist. I couldn’t breathe, or think, or move. I couldn’t do anything but cry. I was numb and feeling the worst pain of my life all at once. He wasn’t even back in my arms yet.
This was the day I was told my 5 month old baby had a brain tumor. Two days later he had surgery. One week later he would be diagnosed with brain cancer….a glioblastoma. A kind of cancer that had most likely been present since birth. A kind of cancer that is typically seen in old men. A kind of cancer that is extremely aggressive. A kind of cancer that has an average survival rate of 15 months. A kind of cancer that required treatment immediately or it would definitely return.
Carson proceeded to have 6 surgeries, 72 does of chemo, 2 blood infections, 29 blood transfusions, 8 hospital stays, 4 ED visits, and 21 MRIs. 19 MRIs have been clear since his initial brain surgery. This summer, after his 20th clear MRI, he will have had no evidence of disease for 5 years. He’ll be considered a survivor. No matter what happens in the days and years to come, he will forever be my hero. He’s a silly, smart, fun, and amazing 5 year old boy that will walk into Kindergarten this fall with no one having any idea what he went through.
He loves to smile, and we love his smile and story to spread hope. Told by: Carson's Mom
As a mother of a skinny baby, I was thrilled when my son Jack started to get a belly. I remember telling everyone he is finally gaining weight and looks so cute with a belly on him. That feeling quickly went to my mom gut ringing loudly that something was wrong-why was his belly so big and why did it feel so hard? After going to the doctor, we ended up at Oishei’s Children’s Hospital and hours later were admitted to the oncology floor, with the news that Jack had tumors on both his kidneys at just 10 months old.
Jack has bilateral Wilms, which is extremely rare, only about 30-50 children a year are diagnosed in the USA. Jack had a large tumor on his right kidney and multiple tumors on his left kidney; we started chemotherapy within three days of being diagnosed. Along with everything else, we found out there is not a surgeon in WNY who was able to remove his tumors and save part of his kidneys. We were advise to meet with the team at Boston Children’s Hospital and decided that is where Jack will have his surgeries. Jack’s body responded to chemotherapy by killing the tumors rather than shrinking them (which is very unusual). The large tumor on his right side continued to grow and really impacted Jack’s ability to eat and function. We were told we had to do two separate surgeries due to the complexity and the size of the tumors. In January 2022, Jack had a 3.4 pound, 6.7 inch tumor removed off his right kidney (Jack only weighted 16lbs after surgery). The surgeons were able to save 50% of a healthy kidney! We continued chemotherapy and in July 2022 Jack had another surgery in Boston to remove 3 tumors off his left kidney. Again the miracle workers surgeons were able to save about 50% of his left kidney. However, in October 2022 we got devastating news that Jack’s left kidney did not survive and we headed back to Boston for a third surgery to remove his left kidney. We continued chemotherapy for two months after to make sure all the cancerous cells were gone after. So Jack is one of the rare people in the world with only a half of a kidney. Which currently puts us in stage 3 kidney failure and will need a transplant in the future. But as of this moment-his half kidney is kicking butt and working well. After 3 major abdominal surgeries, losing an organ and a half, and 14 months of chemotherapy-We are currently 6 months in remission and are praying that we got all the cancerous cells with surgery and chemotherapy. Jack has a 5 year old sister and an old year brother who was born between surgeries and treatments. Jack right now is truly enjoying life and acting like a typical two year-being silly, laughing, causing trouble, and just being a kid. It is the greatest blessing to watch him have the opportunity to just be a kid and play.
During this process, we did genetic testing and found out Jack had a sporadic mutation of his WT-1 gene which is directly related to bilateral Wilms. And the way his mutated, well he is the only person in literature history that has this specific mutation. He is truly one in 8 billion. This is why more research needs to be done, as science is growing, maturing, we are learning more about genes, tumors, blood, types of cancer. We can find mutations, have early screenings for cancers, know what chemotherapy work best for the specific genetics of the cancer and start to attack the cancer as soon as diagnosis.
East Amherst Ny On the night of January 2021, we were eating dinner and telling jokes. When Keeley turned her head to laugh, I noticed a bump on the side of her neck. A week later the bump did not go away, so the doctor ordered an ultrasound of her neck, as well as some bloodwork. The ultrasound showed some swollen lymph nodes, but the blood work didn't show much so an antibiotic was ordered.
Once the antibiotic was done, her pediatrician was a little concerned that the bumps didn't go away, and a new bump showed up in her armpit. So, we went to Oishei Children’s Hospital to get an x-ray and more blood work. The x-ray was clear and blood work looked better, so we were sent home and waited for a call to update us.
Fast forward a few days, I received a call from the Pediatric Clinic at Roswell Park to schedule an appointment with the hematologist, who also happens to specialize in pediatric lymphomas...cue LOTS of concern from me. The hematologist ordered a neck CT, which led to surgery for a biopsy. On March 11th, the doctor from Roswell called me to let me know that preliminary results showed Hodgkin's Lymphoma – tears and fear ensued.
Everything started moving very quickly - PET scan, surgery to have her Medi-port placed, and start of treatment all within a week and a half! The PET scan showed some spots in her lungs in addition to her neck and armpit. Keeley’s official diagnosis was Stage 4 Nodular Sclerosing Hodgkin’s Lymphoma.
Keeley was a trooper all throughout treatment! She looked forward to seeing her “friends” (the nurses and child life specialist) at Roswell. She had her low moments, but overall, she was her happy silly self! Her last chemo treatment was June 23, 2021. We are so grateful to all the doctors, nurses, child life specialists and organizations that help kids and families with cancer and other critical illnesses. Keeley’s wish is to help other kids going through similar experiences and help raise money and awareness for childhood cancer!”
Our journey began on August 14th 2021 when Mya developed a fever in the evening. She had a scheduled MRI that morning which was completely unrelated to the following. That fever went on for a few days after multiple Covid tests and being told it was viral and let it run its course. The following Tuesday the fever remained. We went to the pediatrician who provided and antibiotic because we had an ear infection. Never had I been so excited to hear that. Several days went by and we were not getting any better. The fever remained every 6-7 hours like clock work. She was always tired and would not eat. We finally went back to see the pediatrician on Friday, August 20th and that’s when she was sent to Children's Hospital. Later that evening we learned we were being admitted. Little did we know what the road ahead would lead us to.
Test after test. Waiting and more waiting. We tested for a disease called HLH because our initial screen of Leukemia looked negative. They did a bone marrow biopsy on Monday August 23rd to rule out the Leukemia. More waiting and more waiting. As time went on the doctors stated that a child who has HLH does not look like she does and they don’t get better on their own. She was getting better. Her fever was gone, her appetite improved and she had more energy. The idea that it was a virus that did a number on her system looked more promising. I was becoming cautiously optimistic.
On Friday August 27th we received the scariest news of our lives. My baby girl was diagnosed with a form of Leukemia. B-Cell Acute Lymphoblastic Leukemia (ALL). So many emotions going through my mind. Where do I begin? How am I going to manage this for her? How am I going to be strong enough for her? On Monday August 30th a Medi- Port was placed in her chest where she began to receive Chemotherapy as well as several other medications. We were told the over all treatment takes about two and a half years. In September 11th 2021 we returned home where treatment has continued week after week. While it has seemed a life time we continue on. We’ve hit some bumps in the road but she stays as strong as ever. God willing we are hoping that her treatment will be near its end this October.
All I can say at this time is my baby girl is the strongest person I know. She has rode this storm like no other person I have ever seen. She is my hero.
Scarlett was anything but a quiet or shy little girl. She didn't have many words yet at the age of diagnosis or age two, (we think because of the Chemo she was delayed a bit), But she didn’t need all the words she caught everyone’s attention by her many genres of dancing that she would perform, her love of the Buffalo Bills and her addictive facial Expressions, her laugh, smile and those adorable giant dimples she had on each cheek (thanks to her daddy). Scarlett made a huge impact to many people around the U.S. and pretty much everywhere she went in her short time with us here on Earth.
Scarlett had just had her 15-month checkup from her pediatrician’s office where they said she was a perfectly healthy 1 year old and was hitting all her milestones. We left there with smiles on our faces. Then Four Days later January 26, 2020, our whole world was about to change. I found a lump on her right forearm; it was hard and didn’t move and it was painless. The next morning, I called her doctor and told them what I found. We got right in, although she did not know what it was, she sent us home and Scarlett was on an antibiotic in case it was an infection. Fast forward to February 11, 2020, when we found out our sweet Scarlett Rae was 15 months old and was diagnosed with stage 4 Alveolar Rhabdomyosarcoma a rare soft tissue tumor that was a very aggressive type of Cancer. Scarlett started her first Chemo treatment on March 2, 2020. From that day forward she fought a long hard battle. In this time, she had 32 rounds of radiation to her little forearm and was on 6 different types of chemo until we found one that worked. Scarlett ended her Treatment October 29,2020. Scarlett was then in remission for a short time, from December 2020 to February of 2021. Where she relapsed for the 2nd time. This time was different we immediately felt like this was not going to be good, and we were right. This relapse was fast, and it took over our baby girls’ body very quickly, faster than her team could figure out what to do next. She was in the PICU two times, once in the middle of April 2021 – end of May 2021( where we thought we were going to lose her), Then again in June; for 5 days. In this stay Scarlett received 10 more rounds of radiation and tried another 7 different types of Chemo. The cancer was just too fast. She was stable enough to go up on the oncology floor (J12S) for 2 days. When we were then told there was nothing else, we can do. The whole team did the best they could do in the amount of time they had. Throughout that stay Scarlett once again fought LONG AND HARD, and still with a smile on her face when she could. Until she took her last breath at home on June 30, 2021. Scarlett was only 2 1/2 years old when she passed away. That Day was harder and still is the hardest day of our lives.
We need to find a cure for these rare aggressive CANCERS. We need a shorter wait time in between diagnosis, biopsies, and surgeries. There should be some type of treatment these babies and young children can start while waiting for results. I think this may have helped the cancer not to spread so quickly. We need to tell our stories to the research groups, they should (if not already) keep the tissue they take from all the biopsies and keep testing them to see what kills them, not just what stops them from growing. I will never stop telling our story about the day our whole world changed forever.
Liam’s story started in December of 2019. He ended up in the ER with swollen lymph nodes in his neck, and we were desperate for answers. A week later, Liam was diagnosed with T-Cell Lymphoblastic lymphoma at the age of 6. After a month of intensive inpatient chemotherapy and multiple biopsy surgeries, he was considered cancer free and sent home. Liam fought for over 2 years, enduring outpatient chemo therapies along with a few in patient visits as well. Liam finally rang the Roswell Victory bell on May 2nd, 2022!!! Liam was finally cancer free and able to get back to just being a kid again! Unfortunately, that was cut short 10 months later. A week before his 10th birthday, we got the unthinkable news… Liam’s cancer was back. This time, it was in his bone marrow, and it’s a leukemia. Similar to last time, but now it’s T-cell lymphoblastic leukemia, and he needs a bone marrow transplant! Here we go again. They immediately started the search for donors. Myself, Matt, and Luke were all tested, and we all came up only at a 50% match… they wanted a 100% match! Next, they started the search on the world wide database for Marrow donors, and after a few weeks, we had 12 matches! The doctors carefully selected their top 3, and after some back and forth, we landed on a 24 year old female from the United States, and she was going to save our sons life! Liam underwent more intensive chemo, was admitted to the hospital for another 30 days, and after that, they held him in a holding pattern with maintenance chemo until the donor was lined up and ready. Finally after months of waiting Liam’s donor was on the schedule and he was readmitted back to the hospital and prepped with MORE intensive chemo and 3 days of full body radiation to completely wash his system of everything! On June 9th, Liam received his new marrow, and everything went super smooth! We held our breath as we waited 2 weeks for the new marrow to make its new home and start rebuilding. Liam encountered a few obstacles along the way, but amazingly, he overcame everything thrown his way. After a month, he finally headed home!!! Shortly after being home, he landed back in the hospital with unexplained fevers and terrible stomach pains. After a week and about a million tests, it was determined Liam was having some Graft vs. Host disease, and we needed to get a handle on it asap. The doctors did an amazing job managing and controlling Liam’s GVHD. After a few weeks of no food with intense antibiotics and steroids, he was finally on the upswing. He was able to come home, and we intended to keep it that way! Liam’s been enjoying life playing with his brother and his dog Lucy. He now has a new routine at home. He misses his friends and extended family the most and can’t wait to get back to being a normal kid! Today, he is day 75 post transplant. The next celebration will be day 100 when he is considered in the clear, and he can start weaning off some meds and possibly get his central line out! Liam is an inspiration to everyone around him. Throughout his entire journey, he has been able to give back to kids in need at OCH through his pajama drive. Liam has successfully donated thousands of pairs of pajamas to kiddos in need, not only to floor 12 but hospital wide! Liam also did a fundraiser to purchase month long parking passes for every single family on floor 12, hoping to relieve the burden of paying for parking while their family member is fighting cancer! Liam is looking forward to being a kid again and getting back into school and sports! He is forever grateful to his donor, and he looks forward to meeting her sometime in the future! 💪🏻💙🥰🎗️
One month prior to his fourth birthday, Jack was diagnosed with Bilateral Multifocal Wilms' Tumor. Typically, treatment for Bilateral Wilms' is six weeks of chemo followed by partial nephrectomy to remove the tumors. However, after Jack's six weeks of chemo, there was no change in the tumors. Our team, led by Memorial Sloan Kettering Cancer Center, advised us to continue with a different combination of chemo to try one more time at shrinking the tumors prior to surgery. After the second round of chemo, imaging devastatingly showed no change.
On January 19th 2022, Jack underwent a 12-hour surgery to remove one softball-sized tumor on his left kidney and seven smaller tumors on his right kidney. He was left with roughly 30-50% of healthy tissue from each kidney. We waited a solid seven days for the pathology results – but unfortunately, the report was not in our favor, Jack had Diffuse Anaplasia in each kidney. This drastically changed our treatment plan after surgery. We settled on seven days of abdominal radiation as well as 28 weeks of chemotherapy. Jack experienced many setbacks and complications post-surgery. Often, we felt shattered and like we would never see the light at the end of the tunnel. Jack finished his last round of chemo August 19th, 2022. His final scans to determine that he had no evidence of disease were in October 2022.
We live in 3 month increments, hoping and praying that even with his high chance of recurrence, our energetic 5 year old will be able to live a long and healthy life, cancer free. The amount of support, love, and prayers we have so graciously received from our family, friends, medical team, and complete strangers is immeasurable. We have been welcomed onto a team of fellow families who are fighting this fight through blood, sweat, and tears just like us. It is the team that no one wants to be a part of, but we are so thankful to have them.
Although there is no longer a single cancer cell in Jack’s body, cancer will forever be a part of our lives. We have been changed because of this awful thing that is truly not so rare. Fellow patients and their families have become family to us. We are so proud to be lifelong ambassadors of childhood cancer awareness. -Jack’s moms, Jamie & Cortlyn
Hannah is a 12 year old girl attending North Tonawanda Middle School. She is in 7th grade.
On June 1, 2022, Hannah woke up complaining of elbow pain. When we contacted her pediatrician later in the week, he felt it was due to overuse since Hannah is so active in sports. We were told to keep an eye on it and to contact him if things change. Over the weekend, she was crying of pain, and on Sunday morning, her elbow was three times its normal size. We took her to the pediatric urgent care, and after an x-ray, they determined it was broken. They put her arm in a sling and referred us to an orthopedic office. I called on Monday, and they couldn't get her in until Thursday. They had to do another x-ray and stated it was not broken but maybe deeply bruised. They said she could use the sling as needed, but the gym and sports were done through the end of June. Thursday night, she had a fever of 102. I called the doctors office, and they had her come in on Friday. She was seen but by then had no fever. They said it could just be a virus, we were sent home. That weekend, she started to refuse to eat anything. By Monday, she refused to even take a bite of her favorite food, breaded pork chops. We took her to DeGraff as we were concerned she was developing an eating disorder. There had been some influence from school. Some blood tests were done, and we were told to contact our pediatrician the next day. I was also told that I should go to Oishei in the future as they can do additional tests. The next day, I spoke with the pediatrician, and he wanted to have additional blood tests done later in the week. We had those done at Kaleida Blood Lab on Sheridan, and the woman there was fantastic with Hannah. We saw her pediatrician the next day, and he said it looked as though she had mono at some point. He wanted repeat labs completed the following week. On Thursday, June 23, Hannah had her last day of school. It was a half day, and I took her to complete the blood work afterward. Then she went to grandma's house for the night. On Friday, June 24, Dr. Joe from Wheatfield Pediatrics called us and said we needed to bring Hannah in as soon as possible. We arrived at the doctors office and he brought us into his office. He said there are concerns with her blood work, and we need to bring her to Oishei Emergency Room, where they will run more tests. We were told to pack things to do for a long afternoon. We arrived in Oishei at about 4 pm. By 8:30 pm, we heard the words no parent ever wants to hear.
On June 24, 2022, Hannah was diagnosed with ALL B Cell. Acute lymphoblastic leukemia. She had a bone marrow biopsy and a spinal tap completed along with her mediport put in on Monday, June 27th. It was the longest 3 hours of our lives. The biopsy showed that the cancer had spread to 70% of her cells in her bone marrow and 15% in her blood work. It was not found in her spinal fluid. Chemo started a day after. Within a week, it was no longer found in her blood work.
Treatment plans changed 2 more times in July as tests came back, showing she had a higher chance of relapse. She was put on a daily chemo pill by the end of July that she takes all through treatment. Hannah has had many obstacles, including never having to take any pills before. She was discharged from her initial stay on Aug 1st and then had to be at Roswell for 8 hours the following day. This did not stop her from attending cheer practice that night. Last season, she was able to cheer in 3 games on the sidelines. She also attended the majority of her practices.
Hannah went into full remission at the end of September but still has to complete treatment through October 2024. Hannah has had 4 planned hospital stays for continued treatment that were completed right before Christmas. Since Aug 2022, Hannah has also had 7 unplanned hospital stays due to fevers and infections. She has spent in total about 4 months in the hospital in the past year.
Currently, Hannah is in the maintenance phase, which is the last phase of treatment. She continues to need blood transfusions from chemo treatments. As of now, everything is completed at Roswell Clinic. Cheer has started again, and she participates in the majority of practice. She is looking forward to being able to participate in cheer competitions this season.
Hannah and her brother have kept busy this summer hosting lemonade stands and donating to organizations that have helped us through the process. Many organizations are for pediatric cancer patients but also include the rest of the immediate family. We've had the opportunity to work with P.U.N.T., Sweet Buffalo, Hope Rises (along with the Shine Gold campaign), Olivia's Bears, Camp Good Days and so many more.
She is a true warrior and fighter in every sense. She is Hannah Strong. She has a kind heart and always tries to help the friends she's made along the way. She wants to hold a blood drive every 6 months so that she can help out. There is always a shortage.
She helped make fake flower vases to take to the kids on the 12th floor at Oishei. They can't have real flowers due to the mold. But she wanted to help brighten their rooms up. She is not the only one trying to give back and bring awareness. We have met so many other kids and families on this journey doing the same thing. There are so many strong ,tough ,determined kids trying to help other kids and to get more funding for research needed for pediatric cancer. We will continue this fight long after treatment is over.
8 years old. Dx: February 2020 Stage 3 Embryonal Rhabdomyosarcoma age 4 Currently NED
His story: What started out as an injury from a fall on some stairs and a lump that appeared on his lower leg has turned into something no child should have to endure. Early November 2019, Heath bumped his shin on some stairs, and a lump appeared on his shin. He was seen by his amazing pediatrician, and it appeared to be a hematoma. In December, the lump was growing, so they did an x-ray to rule out a fracture. The x-ray was negative, so an ultrasound was done. The ultrasound revealed blood flow through the lump. An mri was scheduled by our pediatrician at Oishei Children’s Hospital, which took 2 months to get into. The mri revealed a mass. On 2/27/2020, 4-year-old Heath had a biopsy, and in less than 24 hours, our family received a phone call confirming our worst fears. Heath was diagnosed with stage 3 Embryonal Rhabdomyosarcoma, a rare and aggressive soft tissue cancer. Immediately following diagnosis, Heath’s medical plan and treatment were put into action at Roswell Park Comprehensive Cancer Center. More scans, more tests, and surgery. Our life was a wind whirl. As we tried to process, focus, and keep ourselves together for Heath, who himself was asking us “am I going to die?” (Even at an early age, Heath knew cancer sucks he had recently lost a great grandmother to cancer.) Heath has endured 42 weeks of aggressive chemotherapy, 30 sessions of radiation, 4 surgeries, 6 months of daily oral maintenance chemo, multiple scans and tests, hospital stays, ER visits, too many pokes too count, neuropathy, sickness from the side effects, foot drop and stress fractures. After 531 days of fighting, we finally heard the words “no evidence of disease”. Heath rang the victory bell for completing treatment on July 6, 2021, and took his last chemo pill on July 19th, 2021. His 1st post treatment scans and tests were July 22, 2021, and due to white spots found he had to have a pet scan to rule out the cancer returning. August 3rd, 2021, he had the scan, and he was confirmed NED (no evidence of disease}. He returned to school for the 2021-2022 school year as a 1st grader and enjoyed it so much. The staff at Portville Central School were amazing at helping him grasp what he missed, helping to develop his handwriting, (due to the neuropathy in the hands he was unable to develop these skills at home the previous year). It, for us, was a hugely successful year. He continued to be tested every 3 months until Aug 9th 2022 which we celebrated 1 year NED. He then progressed to scans and tests every 4 months. July 2023, he celebrated year 2. Heath is currently undergoing scans at 6-month intervals with x-rays and labs. Heath struggles with physical challenges of foot drop and frequent falls from the tumor removal surgery, toe walking from neuropathy, and he struggles with large gross motor skills, scars both mentally and physically. He’s fractured his tibia twice; he is so full of energy and spirit it’s hard to slow him down. Heaths journey is not over. This is a lifelong journey. Anxiety, especially at scan time, is real. You worry about reoccurrence or secondary cancers from the treatment itself. Survivorship is a whole new journey. While we are so grateful for his milestones, we struggle and hurt for those fighting and for those who have been taken. Our family can only hope that science will continue to progress. We know now more than ever how important research and advancements are in regard to childhood cancer. Our hope, through telling his story, is that the world will continue to fund the search for a cure to end childhood cancer. Watching your child or grandchild suffer the horrors of treatment in order to have a chance at life is something no sibling, no parent, or grandparent should ever have to experience. No child should have to go through this. We dream of the day when every child can be promised a cure and live a healthy life, and be able to fulfill their hopes and dreams.
On May 2nd 2021, our lives were totally and irrevocably changed when our then 10-year old son, Colt, was diagnosed with leukemia, AML. He was treated at Oishei Children’s Hospital in Buffalo, N.Y. He went through three cycles of aggressive treatment and then had a bone marrow transplant November 1st. His little brother Jack was his perfect donor match! After leaving the hospital in December he continued to receive outpatient treatment at Roswell Park. He had the best care by all at OCH and Roswell. Colt spent from December until February 9th at the Ronald McDonald House of Western NY. Everyone there made us feel so welcomed and it truly became our home away from home. Colt was able to ring the bell at Roswell to celebrate remission and 100 days post-transplant. He continued going to Roswell weekly and then once every other week then we got to once a month. He went back to school and started back up with his swim team in November of 2022. He started competing in January 2023, swimming faster times than before. It was truly amazing to see him back in the water doing what he loves. All was starting to get back to a new normal. Fast forward to February 2023. A year after he rang the bell he had an end of treatment bone marrow biopsy. There were no concerns, no worries, all of his labs were great, engraftment from transplant was perfect, this was supposed to be routine. Later that week we found out he had relapsed. Our world once again was rocked. We all were truly in shock. He immediately started treatment inpatient. Colt has been such a different child this time around. A true warrior with the mindset of “Let’s go, give it to me, get the job done and get me out of here”. He truly continues to amaze us each and every day. He always has a smile on his face and is always willing to be there for his warrior friends. He cares so deeply. He was able to leave the hospital for a month and was outpatient at Roswell doing more chemo because the relapse chemo didn’t get the job done. Well, that second round of chemo also didn’t fully get the job done, so we had to go back inpatient to get one more aggressive round. Colt is currently continuing to fight like hell, stay strong, positive and always fight ready. Chemo started back up on June 16th and his second transplant took place June 21st. We had an amazing donor, and all we know about her is that she is a 19-year old American, and that she is undeniably caring and kind! He left the hospital in July and is recovering from transplant in the Buffalo area and continues to go to Roswell for appointments. He received great news that there is currently no evidence of any active disease and that the engraftment results are 100% the donor cells in all three areas they check. We are looking forward to post transplant day 100. Another bone marrow biopsy will be done at the end of this month to be sure there is still no evidence of disease and then hopefully be able to return home this Fall. Please continue to pray for our amazing warrior. We hope that by reading and following his story, you can keep updated on Colt’s progress and people can offer support. We also hope to raise awareness that pediatric cancer is real, and affects families every day. What Colt has always wanted to do was to help others the way so many people and organizations have helped him. With the help of Boss Because and Andrea Tarshus he was able to start the Colt 45 Strong Inc. Foundation. This foundation is one way to raise awareness to pediatric cancer, as well as to help raise funds for other children and their families who find themselves in similar situations. He has enjoyed putting together transplant bags and has started his own podcast to help other warriors on their journey. Colt 45 is determined, fierce, and destined to make a difference. He has always been kind and compassionate, but tough times make for tough people, and Colt has become infinitely more resilient as a result. This foundation embodies what we love about Colt45: kind and caring, while also strong and determined. Thank you all for your continued love, prayers and support.
Meet Keeley
