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Gold Ribbon Hero: Noah S.

Tag Archives: Gold Ribbon Hero

Meet Noah, a 5 year old ALL warrior. Noah plans to attend the University of Tennessee when he grows up to learn how to be Spiderman. He loves jiu-jitsu, soccer and t-ball.

The following is a story told by Noah’s mother, Martha.

“On June 27th, 2018, our three and a half-year-old son, Noah, began falling and complaining of pain in his left leg. He also was having severe stomach pain and labored breathing, so we went to our pediatrician’s office and were placed on prednisone. Three days later, we went to the ER and were admitted for testing and observation. I asked the ER doctor if Noah could have some form of cancer and since all of Noah’s tests and labs came back normal, she “promised” me Noah did not have any type of cancer. Unbeknown to us, the steroids had falsified his labs. For the next four weeks, we were back and forth at different doctors trying to figure out why Noah continued to have difficulty walking, labored breathing, severe abdominal pain, intermittent fevers, nose bleeds, and the need to sleep all the time. One Sunday afternoon, as Noah was once again with a low-grade fever and wanting to nap, I asked him what was wrong, and he responded with, “Mommy, I am very sick. You have to help me.”

Finally, Noah’s second GI panel came back abnormal, showing that he had bacterial overgrowth. This led us to a GI specialist who ran blood work on baby Noah. The next day, July 24th, 2018, our GI specialist called and said all of Noah’s labs were abnormal. She said there was no way his labs could be this abnormal and that she thought the test was skewed. I asked her if he could have some form of cancer, and she said, “If these labs are correct, then I am very concerned for his health.” She sent us to the ER to be retested. Before I called my husband at work, I looked up every abnormal lab that she had mentioned. His platelets were at 9,000, his neutrophils were at zero, and his white and red blood cell count was low. Every abnormal lab I looked up said, “leukemia.”

That night, in the ER, as we waited for our results, we heard the doctor outside the door take a deep breath and say “ok” as he opened our door. Before he could even speak, we asked him if Noah had leukemia, and he said everything was pointing in that direction. He said it could still be a virus, but that a hematologist would be down to see us. Twenty minutes later, Dr. Spiller came into our room. We asked her what kind of leukemia Noah had, and she said it appeared he had Acute Lymphoblastic Leukemia. Everything was confirmed the next day, July 25th, at 3:00 pm.

We began grieving for the loss of our healthy child and began coping with now having a child with cancer. At first we were in shock and afraid, then we became sad, angry and anxious, and finally, we became numb and accepted the fact this was our new normal.

We never realized how hard our journey with leukemia would be. We were in shock to know our baby had leukemia and then devastated when he became high risk to relapse due to an elevated MRD on day 8. Noah had instant complications. From hypertension to tachycardia, to a pericardial effusion, and a staph infection in which his port was removed, and a PICC line was placed, everything was spiraling out of control. Noah even reacted to the plasma in the platelets which landed him in PICU. Noah’s journey was difficult from the beginning. He ended up losing 15% of his body weight on steroids and needed a feeding tube for three and a half months. He also developed severe neuropathy in which Noah was bedridden and could only move his eyes. He was unable to walk for two and a half months. At one point, he was the sickest child on the oncology floor and one of the hematologists called him the “mystery ALL child.” If it could happen, it was happening to Noah. Every day was a new crisis.

With a total of seventy-three nights spent at East Tennessee Children’s Hospital, 13 blood and platelet transfusions and one IVIG, four new ports, and multiple dangerous reactions to several chemos, we are still in remission and in the maintenance phase of treatment. We are now doing well and will finish chemo on 11/1/2021.

Although there have been many difficult days, we turned our negatives into a positive by creating the #NoahNation Foundation via the ACCO’s Founding Hope program. Being inpatient so much, we saw a need for medically adapted pajamas. Kids undergoing chemo needed special pajamas that have easy access to their ports, tubes, and drains. We saw kids fighting cancer in dress shirts because the button down tops allowed for this easy access and Noah was always fighting in a Pull-up.

As a result, “The #NoahNation Foundation” was formed to create warrior and warrior princess medically adapted pajamas. Pajamas are altered using Velcro’s, snaps, and plastic zippers so that children can fight cancer in comfort. These pajamas are metal-free so that the children can have tests done while in these pajamas. Our goal is to bring dignity and comfort to all cancer kids undergoing treatment. As of today, over 400 pairs of medically adapted pajamas have been gifted to children battling cancer.”

The #NoahNation Foundation is one of ACCO’s Founding Hopes who work to help serve their community by providing pajamas adapted for kids with cancer. Follow Noah’s story on Facebook @SavingBabyNoahfromBCellALL

 

 

 

 

 

 

 

 

 

 

 

Learn more about ALL: https://www.acco.org/blog/about-childhood-leukemia-detection-and-diagnosis-2/

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

Meet Will, a forever 11 year old childhood cancer hero.

At three years old, Will was diagnosed with adrenal cancer. He immediately started chemotherapy when it was discovered that he had Li-Fraumeni syndrome (LFS). This syndrome causes a mutation of the TP-53 gene which results in a susceptibility of several cancers. Since being diagnosed with LFS, Will underwent full body scans each year. 

For four and a half years, Will was considered to have no evidence of disease(NED). In April 2018, doctors found a tumor on his left pelvic bone and began treatment for osteosarcoma. Will endured chemotherapy and surgery on his pelvic bone. The team resected a large portion of his hip bone. After his surgery, he was declared NED in February 2019. For seven months, Will remained NED until a scan in August 2019 revealed osteosarcoma in his right hip bone. Hip replacement was necessary and this time, unfortunately chemotherapy was not an option. 

Will was a fierce competitor in basketball and baseball and loved playing video games with his friends. He loved the color blue because it represented many of his favorite professional teams including the New York Giants, New York Yankees and the New York Rangers. 

Will was determined to not let cancer get him down. Despite his diagnosis, he continued to brighten up every room he entered and giggle helping his family and friends feel at ease. On June 2, 2020, Will passed away peacefully surrounded by loved ones, after a courageous battle with pediatric cancer. According to Judy Shields, Will’s grandmother, “he was certainly a gift to the world! He taught us all how to fight and stay strong right to the end. Smart as a whip with a smile to light up a room. We will miss him forever.” 

 

Meet David, an adventurous 8-year-old DIPG warrior. He is a bear cub scout and a roller coaster enthusiast with a zest for life!david1

David Jr.’s symptoms came on quickly. Within a day his parents knew something was wrong. David was participating in his weekly jiu jitsu class when he could not roll. His grandfather brought him home and his parents noticed that his head was wobbly and tilted and he was acting goofy. David’s parents took him to the pediatrician who suggested David could have gotten into some medication. The doctor had ruled out an ear infection and possible recurrence of torticollis, a problem with the muscles of the neck that causes the head to tilt down. When David was a baby he had suffered from this condition and his parents thought this could be a recurrence. The doctor sent him home and said that if he had any headaches or was dizzy to bring him back to the office.

On April 17, 2018, David was taken back to the doctor’s office because of dizziness and a headache. The pediatrician mentioned that it might be a brain tumor, but his mother remembers laughing it off thinking it was so off course. The pediatrician advised his parents to take David to the ER for fear of a stroke. After a stat MRI, the ER doctor told them that there was a mass on David’s brain.

david3David was brought into the PICU almost immediately where they met the oncologist who advised David and Elizabeth about David Jr.’s condition, DIPG. Diffuse Intrinsic Pontine Glioma (DIPG) remains one of the deadliest forms of childhood cancer, with a long-term survival rate of less than 1%. After receiving the diagnosis from the oncologist, David’s parents decided they wanted to get a biopsy even though that was against the head of pediatric neurosurgery. They were advised that having the biopsy would not change the result and a cure didn’t currently exist.
David Jr.’s parents were not accepting this, so they decided to go forward with the biopsy. He received 30 days of radiation to his brainstem and then received radiation in 2019. In the summer of 2019, David made his way to Cincinnati for a trial. Unfortunately, he was denied admission because he was doing ‘too well’ to participate. The family was advised to bring him back after Christmas.

In December 2019, he lost the use of his right hand. He was on a match trial in January of 2020 and by February of 2020 he was in the ER. He was extremely lethargic and the tumor had changed. He was prescribed high dose steroids again and they waited. The first week of April during the covid pandemic, David was rushed to the hospital. This time he stayed for five days and doctors were thinking of doing radiation for the third time. In late April, David was having problems breathing. He underwent radiation for the third time and just last week he got out of bed by himself, with no assistance!

Like night and day, David went from being unable to roll, speak, move, breathe properly, and david2swallow to talking like normal, walking normally and getting around with no assistance!

Every day, the Turner family talk about their “good day score” and last week David said he had an “11, because I got out of bed and walked by myself!” This week, he rated one day a “14” because of surprises throughout the day.

David is surprising all of the doctors with his turnaround. His family went from talking about end of life care to walking around normally. During his DIPG journey, David has remained positive. When he was initially diagnosed, his parents had pre-existing plans to take him to a popular outdoor event in his hometown and they weren’t missing it just because of the diagnosis. He told his mom that “today was the best day ever” and asked if they could come back next year. Of course they did. David’s parents were dedicated to making memories with him while he was able to get around and remember. For a 9 month diagnosis milestone, his parents celebrated with a Chuck-e-cheese party. For the one year diagnosis, his parents celebrated with a Nerf party.

“Life with David is an adventure everyday. We have done as much as we can. He went to kid prom, he has been traveling and riding roller coasters. He loves to go to the beach. We have made every day the best day ever and an adventure for him. We wanted him to have as many memories as possible” said Elizabeth.david jr

This past January, David was able to meet the Governor and Senator of Kentucky where he rummaged through their desk drawers and banged the pens on the desk. Both the Governor and Senator welcomed David and helped declare May 17 as DIPG Awareness Day. Last year 32 states got proclamations passed and this year the proclamation was signed for DIPG awareness. David even declared Ice Cream Day at the youth advocacy day in the rotunda this past January.

Follow David’s Adventures on Social Media:
Facebook: @davidsadventuredipg
Instagram/Twitter/TikTok: @davidjrmom

UPDATE: May 21, 2021 – David Jr. battled DIPG since 2018 and this morning, David passed away.


Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
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Donate to ACCO

 

Meet Molly, a 19-year-old currently battling stage 3 anaplastic ependymoma. This warrior is currently a freshman at the University of North Carolina Greensboro studying musical theater. grh molly

A week before leaving for college, Molly experienced debilitating headaches. She went to the emergency room and was sent home with benadryl and a migraine diagnosis. After being asleep for 40 hours straight,  Molly had an MRI which revealed a tennis ball size tumor. On August 15, 2019, Molly was diagnosed with stage 3 anaplastic ependymoma. That same day she was meant to move into her college dorm. Her mom said it was a complete shock, while Molly was just worried about going to school.

Treatment began almost immediately with a total resection of the brain to remove the tennis ball tumor followed by months of rehab and seven weeks of proton therapy.  In January she had her first post op MRI and will keep having scans until officially cleared.

Music has been instrumental in Molly’s recovery. Three weeks after surgery, she danced for physical therapy. Within six weeks, she was on stage performing at a benefit. She wants people affected by cancer to “let yourself have bad days but know that you are strong enough to have good days too. Let people envelope you in love, because you aren’t doing this alone.”

unnamedMolly is an advocate for childhood cancer and has made some very exciting public appearances. She sang in front of 20,000 people at the Hockey Fights Cancer Night at the Blue Jackets and raised awareness at the Governor’s Mansion. In addition, she helps to raise awareness for pediatric cancer research by committing to ride a bike for 100 miles with her sisters.

Mighty Molly has been determined since day one of her diagnosis. She is a performer, singer and dreamer. She hopes to be on Broadway or a cruise ship to entertain the masses. Only six kids were chosen at UNCG for her musical theater and the spot was saved for her when she was unable to attend her first semester. Help ACCO send well wishes to Molly and her family.

To learn more about childhood cancer: https://www.acco.org/blog/childhood-brain-tumors-staging-and-prognosis-factors/

To donate because kids can’t fight cancer alone: https://www.acco.org/donate/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

#childhoodcancer #childhoodcancerawareness #awareness #goldribbonhero #themightymolly

 

GRH_ Natalie

 

 

 

 

 

 

 

 

 

 

 

Meet Natalie, a 12 year old aspiring astronaut who wants to become the first woman to walk on the moon! This courageous and determined little girl is a wilm’s tumor survivor!

At three years of age, Natalie was diagnosed with a bilateral Wilm’s tumor. Symptoms started with a swollen stomach and developed into vomiting and constipation.  Her pediatrician ordered an x-ray of her abdomen and initially said it was stool in the images. As a precaution, labs were drawn which came back showing Natalie was severely anemic. She was sent home and ended up in the Cincinnati Children’s ER that night. The family was in the ultrasound room for more than an hour before receiving the diagnosis.

Natalie was immediately admitted into the ICU and chemo started within a few days. A month later Natalie was rushed into emergency surgery in septic shock due to complications and as a result, the tumor and her right kidney were removed. After two months in the hospital, Natalie was released. Four months after the initial diagnosis, Natalie had surgery to help salvage her left kidney however doctors had to remove it and place her on dialysis. Over the next year, she was put under daily chemo and dialysis treatments. In October of 2012, Natalie received a life saving kidney transplant from a family member.

Today, Natalie is a normal 12 year old who loves spending time with family, drawing and participating in drama club. She was officially cured in October 2016 and is very thankful to be a survivor. She still has to go in for labs and doctors visits, but according to her mom Tracy, “she handles all of that like the pro she is.”

Please join ACCO in sending well wishes to the young astronaut to-be, Natalie!

For more information about Wilm’s tumors, please visit: https://www.acco.org/wilms-tumor-and-other-childhood-kidney-tumors/

To nominate your Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

To donate to help kids like Natalie: https://www.acco.org/donate/

Meet Naomi, a kind-hearted little girl who loves unicorns and helping people. Naomi is currently on treatment battling Pinealoblastoma, a subtype of a brain tumor and spinal cord tumor. grh naomi

Red flags started to arise after Naomi collapsed in school; she didn’t even know her name. Naomi visited the emergency room several times before doctors finally took a closer look. They found a mass in her pineal region and immediately sent her to Children’s in Cincinnati. On October 3rd, Naomi and her parents were given the diagnosis of stage four pineoblastoma with metastasis in the spine.  “We got the MRI results and they took us in a big room. It took my breath. I couldn’t believe it. All I wanted to do was go grab her and hold her. We were lost” her father, Kenneth, remembers.

The treatment plan for Naomi is rigorous consisting of 30 proton radiation treatments and six months of chemotherapy. October of 2019, Naomi had four brain surgeries and doctors told the family that if they got all of the cancer and it comes back, there is nothing they can do.

Naomi is a kind soul. While in the hospital, she bagged up her Halloween candy and passed it to the children that didn’t get to go trick or treating. She is working to start a teddy bear drive to donate to the hospital. She is currently undergoing chemotherapy for the next few months. Please help ACCO by sending her well wishes!

Follow Naomi’s story here: https://www.facebook.com/naomisfight/

To learn more about childhood cancer visit: https://www.acco.org/blog/childhood-brain-tumor-cancers-detection-and-diagnosis/

To donate to help kids with cancer: https://www.acco.org/donate/

 

Meet Frank “Sal,” a 16-year-old sports enthusiast and Lumineers fan. At the age of 14, Sal was diagnosed with germ cell testicular cancer and is currently in remission! IMG_3438

Sal was complaining of a swollen testicle after a bike accident and his parents took him into the doctor’s to check it out. Instead, they were sent straight to the emergency room after the doctor suspected it might be ruptured. Within ten minutes, the doctor informed Sal and his parents that it was testicular cancer. Initial impressions were scared and upset but Sal was determined to beat it.

His treatment was accelerated by receiving a total of 28 chemotherapy treatments. The treatments were rigorous; both in and outpatient and once the initial 24 treatments were complete, they were sent for four additional outpatient treatments. “He went through treatments like a champ, now he can help other children to see that they can get back to normal,” his mother, Elizabeth said. During his journey, Sal had abdominal surgery to remove a mass from his kidney where his cancer had spread.

Elizabeth remembers, “I was diagnosed two years ago with breast cancer and I am currently 1.5 years in remission. I thought I handled my diagnosis and treatments like a pro until I watched my son go through this. He blew me away. He never complained, sat in the hospital for six days in a row, 24 treatments over seven weeks and still smiled for pictures. When he lost his hair, I cried, not him. He has been unbelievably strong through this.”Sal

During treatment, Sal was not able to join the football team, however he has joined the track team and already earned second place in a conference for his long jump. According to his mom, “Frank is the most giving kid, he plans to advocate that you can make it and do bigger and greater things even when you feel like rock bottom.”

 

To learn more about childhood cancer: https://www.acco.org

To donate to help kids with cancer: https://www.acco.org/donate/


grh AdrianMeet Adrian, a shark and travel enthusiast that was diagnosed with Pituitary Germinoma at the age of 16. 

Adrian’s symptoms started in August 2017 when he was complaining of frequent headaches accompanied by nausea and vomiting. In October 2017, an MRI was taken of his brain revealing a mass in his pituitary region which compressed his left optic nerve.

On November 10, 2017, Adrian underwent his first brain surgery to remove the top portion of his tumor however the rest of the mass was not able to be removed. The top portion of the tumor was sent to the lab revealing Intracranial Pituitary Germinoma.  Just 12 days later, Adrian was sent back into brain surgery to remove built up fluid on his brain.
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Adrian’s mom, Veronica said “we were already devastated seeing him come out of a brain surgery. We were so nervous, but once we heard it was actually cancer, I cannot put it into words the devastation, fear, anger and a million feelings/thoughts/emotions we experienced. As a parent, it is the most devastating thing to hear that your child has cancer.”

Adrian began his first round of chemotherapy leaving him very weak. Three weeks later, he started his second round of therapy. In total, Adrian completed four rounds of chemotherapy and followed with 21 days of radiation.

Through all of the treatments, Adrian did not complain about his pain or struggles. Cancer gave Adrian a new outlook on life and his hope is that all affected with cancer around the world are cured of cancer and can live fulfilling and happy lives.

Adrian was awarded two separate trips which ultimately brought the family closer together in their journey. On his wish trip, Adrian was able to go shark diving, cave diving, and swim with the dolphins. “It allowed us to live in the moment with one another, something that we hadn’t really done because we would always anticipate every appointment, every chemo cycle, every surgery. It was something we were always anticipating, whether it was his health, we were always worrying. It just gave us just that hope to look forward to the future and not think about those things,” explained Veronica.edit2

Adrian is now 18, and thriving as a survivor.  He is currently being monitored by oncology every three months and is on hormone replacement therapy for his pituitary gland. Please join us in sending well wishes to Adrian and his family!

For more information about childhood cancer please visit: https://www.acco.org

Nominate your Gold Ribbon Hero here: https://www.acco.org/gold-ribbon-heroes/

 

 

Meet Grace – a sweet and spirited 9 year old and one of our Ambassadors for Childhood Cancer Awareness Month. Grace is a generous and giving individual with a passion to help others and brighten their days. She is strong and courageous, even when things might not be easy.

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Grace is a typical 9-year-old, she loves gymnastics, softball, riding her bike, reading, painting and swimming. She also loves playing with her friends. This little warrior exudes good vibes and positive energy 24/7. For every birthday, Grace requested that in lieu of gifts, money should be donated to St. Jude Children’s Research Hospital. Little did she know, she might be the recipient of services from them in the future.grace2

Aubrey, Grace’s mom, said “Grace was always the tallest in her class, and then one day she wasn’t. She was drinking a lot of water, so it warranted a closer look. A proactive pediatrician and endocrinologist ordered a brain MRI which resulted in the detection of a mass around Grace’s pituitary gland dangerously close to her optic nerves.”  The initial tumor was detected on April 9, 2018 and over the next few weeks, Grace endured scans at the neurosurgeons office. After discussing things with the doctor at length, Grace decided she wanted to be a doctor. She had more tests, scans and plenty of needles and laid still for each of them. She got through all of the tests by listening to songs on her playlist and smiling as best she could. Grace even comforted her queasy mother and support team.

Grace was diagnosed with Germinoma brain cancer, a germ cell brain tumor, on May 2, 2018. Her aggressive treatment began on May 9, 2018 and she just finished the radiation portion of treatment. As of today, there is no evidence of a tumor and Grace will undergo blood tests, MRIs and spinal taps for the next few months to monitor the success of the chemo.

graceandmomGrace loves to be crafty; she made a sign for the children to sign and date which says “Last Day of Chemo.” Throughout her treatment, she decided to paint pictures to brighten the nurses and the children’s days. When losing her hair became a reality, Grace decided to throw a party and shave her head. Grace’s brother and her best friend joined her in shaving their heads as well.

According to Grace’s mom, “The hardest thing in the process has been missing school. She is one of ‘those kids’ that is passionate about being in school. She video conferences in as much as she can and keeps up on all her projects, even the ones for her future’s gifted program. She rallied a huge team for a fundraiser walk for her hospital and came in second place overall for fundraising. She was the first place for largest team.”

Grace is determined to help people and is currently making a plan of how she will continue helping other kids with cancer. She enjoys tagrace1lking to people about this part of her journey and is focused on helping others. Grace plans on learning more about oncology. She is excited for the future and can’t wait for her hair to start growing back!

*Special thanks to Barbara Zobian and the Candlelighters NYC*

 

Currently being treated for Stage 4 Neuroblastoma

Beckham_022Meet Beckham, one of our ambassadors for the month of September. He is a goofy 8 year old currently being treated for Stage 4 Neuroblastoma at Memorial Sloan Kettering in New York City.  Beckham was diagnosed on September 11, 2013 at the age of 3. A few weeks prior to his diagnosis, Beckham was playing with his sister and they banged their heads together. This resulted in Beckham’s black eyes.  His mom remembers looking at pictures from that time and seeing his eyes starting to darken.

“I called the doctor and they said to watch it and call if things worsened. They went down and then started to darken. I ended up taking him in to his pediatrician and they drew labs. Later that day I got a call that Beckham’s labs were abnormal and that we had an appointment with oncology up at Primary Children’s Hospital in Salt Lake City,” his mom recalls.

Beckham_014At first, doctors didn’t think Beckham had cancer, they went through many diagnoses, everything from mono to anemia. The doctors were not convinced and decided to do a bone marrow biopsy which revealed that Beckham had tumors throughout his body and bone marrow.

beckhamTreatment was aggressive and as a result Beckham started chemotherapy. The doctors performed a resection of the main tumor and radiation to his skull in Utah which resulted in soft tissue tumors and bone marrow clearing well but the tumors in his bones had hardly changed. Beckham’s mom recalls going onto a Facebook group for Neuroblastoma and was urged to take him for a second opinion at Memorial Sloan Kettering. February 2014 was the first trip to NYC where Beckham received MIBG therapy, NK cell therapy, radiation, 3f8 antibioties, cryotherapy surgery, numerous rounds of chemotherapy and surgery to remove lymph nodes in his upper right underarm and chest.

Beckham_048Beckham has had two central lines and is on his third port. “He has endured four relapses, the most recent being March of 2018 and his doctors say he is a miracle boy.”

Fortunately, his latest scans show no evidence of disease. He is currently in treatment for an alk mutation which was found in his past two surgeries.  Beckham has a lot of personality and loves to make people laugh – we are looking forward to many laughs with Beckham!

Beckham is one strong little boy and an example of true perseverance. Beckham expresses to his mom that he is never giving up and his cancer is going down!

 

*Special thanks to our Candlelighters NYC Affiliate and Barbara Zobian*

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