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Gold Ribbon Hero: Noah S.

Gold Ribbon Hero: Noah S.

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

How You Can Help During Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month, and by the time this month is over, another 1,300 children in the U.S. will be diagnosed with cancer. Even with the best treatments available, 1 in 5 children with cancer will not survive. And of those who do, most will have long-term side effects from their treatment.

For these children and their families, childhood cancer is something that affects them every day of the year. For them, it’s not enough just to be aware — they need you to take action. Here are 5 ways you can help children with cancer this month:

Buy a Childhood Cancer Awareness Month T-shirt. Choose from multiple styles and colors, and even customize it with the name of a fighter or survivor you know. Want to go the extra mile? Create your own T-shirt fundraiser so your friends and family can buy their own shirts to match.


Donate. The American Childhood Cancer Organization is the nation’s oldest and largest grassroots organization dedicated to childhood cancer. We fund research, shape policy, raise awareness, and offer resources to children with cancer, survivors and their families. And with your support, we can continue to offer those resources free of charge to families facing a childhood cancer diagnosis.


Holyoke Mall Go Gold Flash Mob

Go Gold® and fundraise for kids with cancer. Gold is the color for childhood cancer awareness, so why not start a gold-themed fundraiser this month? Here are 8 creative fundraising ideas to get you inspired.


Host a PJammin Party. Children with cancer often spend weeks or months living in their pajamas when they’re in the hospital for their treatment. Stand in solidarity with these kids by organizing a PJammin® day to raise awareness and funds for childhood cancer.


Be an advocate. Show your legislators that you want them to make childhood cancer a health priority. Visit our advocacy page to see the current issues affecting children with cancer and how you can show your support.

Need more inspiration? Follow us on Facebook, where we’ll be sharing stories of our Gold Ribbon Heroes all month long.

To learn more about childhood cancer, visit our childhood cancer statistics page.

Damon’s ‘Happy’ Perspective

Meet Damon, a childhood cancer advocate and forever 13 year old. The day that Damon was diagnosed, he heard the song, “Happy” by Pharrell while in the ER with his mother Lisa. His father Brian suggested that he make it their theme song and make every day “happy” which helped Damon be positive every day.

Brian’s radio background afforded him the opportunity to reach out to Pharrell’s recording company where he requested an autograph. Pharrell did something much more exciting; he recorded a video for Damon which proved to be a lasting memento in his life. Pharrell’s message conveyed positivity and to treat every day as a gift. Watch Pharrell’s video here:

One night while in surgery, Brian watched the video several times and allowed it to speak to him. When Damon woke up, Brian showed Damon the video and told him to watch it until he got the message. The video challenged the Billeck family to live in the moment, cherish the gift of today and Damon started having fun. He loved having fun with his family and could often be found making videos with them in WalMart.

Damon’s spirit was infectious. Damon was able to meet Buddy and the staff at Carlo’s Bakery to take a tour and learn more about the company. He made such an impression on Buddy and the staff that he was invited to Buddy’s bakery and restaurant opening in San Antonio, Texas. He was even able to collaborate with Jumo Health to create a comic book titled Understanding Osteosarcoma. Read his comic by clicking the picture below.

During his fight, Damon was able to overcome many challenges including a limb amputation and a relapse. His strength and humor helped him to get through the tough times. Damon wanted to help other kids with cancer at University Hospital by securing a bell for them to ring when they complete chemotherapy or they were declared N.E.D. – No Evidence of Disease. Damon was able to make friends with the San Antonio Fire Department and Chief Hood who made his dream happen. The bell is aptly named “Damon’s Victory Bell” which helps to celebrate an end to cancer and memorialize firefighters who passed to occupational cancer. Appropriately enough, Damon was able to ring his own bell at the age of 12! 

Texas lawmakers invited Damon to the Capitol where he became Governor for the Day. His proclamation as newly appointed Governor was to declare October 6, 2016, “Pediatric Cancer Awareness Day.”  

On January 3, 2017, Damon learned that his cancer had returned. By this time, Damon had tried all procedures and protocols to kill the cancer and the only treatments left would be trial medications. A few months prior, his parents had a conversation with Damon talking about the prospect of cancer returning. “If it comes back, we will turn you into a guinea pig, get you a nametag and call you Bugsy (from Bedtime Stories)!” they said, jokingly. In the Billeck family, humor helped them cope with his prognosis. Damon looked at his parents and said, “well, I guess y’all need to get me that nametag now.” Damon’s perspective on his prognosis was, “I can do this all day!” Brian was so inspired that he decided to tweet Chris Evans, star of Captain America. Evans retweeted the post about Damon and his story went viral. From then on, Damon and Chris kept in touch. Despite his prognosis, Damon continued to raise awareness for childhood cancer. He was the Ambassador for ACCO in 2016 & 2017 and attended the PJammin® for Kids with Cancer event at Microsoft in San Antonio & Austin, Texas. Check out his appearance here: 

Damon fought a long and hard battle with osteosarcoma and passed away on April 3, 2018. His legacy lives on and he continues to help raise awareness for childhood cancer. When Damon was 12, he wrote a letter to cancer, illustrating what it took away and what it taught him. It’s a lasting impression on how children fight and deal with cancer. Read his letter here:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Lisa and Brian have become instrumental in the childhood cancer fight and they continue to advocate for kids with cancer. In early 2019, Brian joined hundreds of advocates at the Texas State Capitol to advocate for continued funding of $3 billion in cancer research funds as part of the Cancer Prevention Research Institute of Texas (CPRIT). Damon’s parents and family continue to advocate and have big plans to help in the fight against childhood cancer. 


Follow Brian on Twitter or Instagram @happy2badad or on Facebook at @teamdamonbenefit/

Read Damon’s original Gold Ribbon Hero story here: https://www.acco.org/blog/golden-ribbon-hero-damons-story/

You can take action in your own state by learning more here.

Learn more about the types of sarcomas and read more stories here during our Sarcoma Awareness Month feature.

Sarcomas in Children

Sarcomas are a type of cancer that grows in connective tissue, such as bones, muscles, tendons, fat, and other parts that support and connect your organs and other tissues.

There are many different types of sarcoma, and they can be classified into two main kinds: soft tissue sarcoma and bone sarcoma.

Types of Sarcoma in Children

The most common soft tissue sarcoma in children is rhabdomyosarcoma, a type of cancer that develops in immature muscle cells called rhabdomyoblasts. About half of all pediatric soft tissue sarcomas are rhabdomyosarcoma. Others include fibrosarcoma, mesenchymoma, synovial sarcoma, liposarcoma and more.

Most pediatric bone cancers are either osteosarcoma or Ewing’s sarcoma. Osteosarcoma, the most common bone cancer in children, usually forms in the long bones of the arms and legs. Ewing’s sarcoma usually forms in the pelvis, thigh, lower leg, upper arm or rib, though bone cancers can form in any bone in the body.

Sarcomas can occur at any age. Most rhabdomyosarcoma cases are diagnosed in children under 10. Other soft tissue sarcomas and bone sarcomas are most commonly diagnosed in adolescents and young adults.

Symptoms of Sarcomas in Children

Soft tissue sarcomas often cause a lump on the child’s body. Depending on the location, symptoms can include:

  • A lump or swelling that is firm and painless to touch
  • Abdominal pain
  • Hoarse voice, difficulty swallowing (for tumors on the neck)
  • Difficulty urinating (for bladder tumors)
  • Drooping eyelids, protruding eyeball, vision changes (for orbital tumors)

The most common symptom for bone sarcomas is bone pain. Other symptoms can include:

  • A lump on the bone
  • Stiffness, swelling or tenderness around a bone or joint
  • Limping (for tumors on a leg bone)
  • Broken bones
  • Fatigue, fever, weight loss, anemia

Because many of the symptoms of bone cancers are common in healthy adolescents and young adults, they are often mistaken for sports injuries or growing pains and can take a long time to diagnose.

Treatment for Sarcomas in Children

The goal of treatment for soft tissue sarcomas and bone sarcomas is usually to remove as much of the tumor as possible with surgery. Radiation and chemotherapy may also be used to shrink the tumor, or to kill any cancer cells that are left behind or that couldn’t be removed with surgery.

Rehabilitation is an important part of recovery from bone sarcoma surgery. Depending on the location of the tumor, some children with bone sarcomas may need to have bone grafts or implants to replace some of the bone that was removed, and sometimes they may need to have part of a limb amputated to get rid of all the cancer. Physical and occupational therapy can help sarcoma survivors learn to walk, move and resume a normal life again, sometimes with the help of braces, splints, walking aids or prosthetic devices.

Prognosis for Children with Sarcoma

The prognosis for children with sarcoma varies and depends on several factors:

  • The type of tumor
  • The child’s age at diagnosis
  • The size and location of the tumor
  • Whether the whole tumor can be removed surgically
  • How well the tumor responds to radiation and chemotherapy
  • Whether the cancer has spread to other parts of the body

Overall, about 60% of children with bone sarcoma and 50% of children with rhabdomyosarcoma survive. For other soft tissue sarcomas, survival rates are high if the tumor can be completely removed with surgery, and much lower if it has metastasized (spread beyond its original location).

Sometimes sarcomas come back after treatment. When that happens, the chances of survival are usually poor.

Colton’s Story

The first sign that something was wrong with Stephanie’s son Colton was the facial droop. Then came the ear pain and the dizziness. In a matter of weeks they would learn that what they thought was a bad ear infection was something much worse — parameningeal rhabdomyosarcoma.

Because of the tumor’s location in the middle of the ear, surgery wasn’t an option. Colton started on a long journey of 15 months of chemo and radiation and 30 rounds of proton therapy. “Chemotherapy made Colton very sick and he had neuropathy in his hands and feet, but he never let that steal his joy,” Stephanie said. 

Colton finished treatment on January 8 and is enjoying spending time at home with his family. He’s still dealing with the side effects of treatment, and he lives with the knowledge that his cancer could come back at any time. But Colton is staying positive, and he looks forward to starting kindergarten in the fall, playing baseball, and one day playing ice hockey like his big brother.

July is Sarcoma Awareness Month. Help children like Colton get the support they need to fight cancer, even after treatment is over. Donate to the American Childhood Cancer Organization today.

Donate to ACCO

Gold Ribbon Hero: William

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.” 

 

Gold Ribbon Hero: Lucas M.

Meet Lucas, a forever three year old neuroblastoma warrior.

In June of 2017, Lucas began running a fever which his parents attributed to teething. While on vacation, he started complaining about eye pain. After getting stung by a mosquito, a hard lump formed on his cheek which was later checked out by his pediatrician. The doctor ran some tests and sent Lucas home with antibiotics toGRH Lucas
treat an infected gland. About a week after the first visit, Lucas’ pediatrician called to urge the family to take him to Children’s Minneapolis. Upon arrival, he was given an IV and had a CT scan. Doctors were 90% sure it was neuroblastoma when they found a mass on his lower right cheekbone, left orbital bone, left jawbone and potentially on his collarbone. Lucas underwent another CT scan of his chest the next day and had bone marrow test and a port placed. The CT confirmed that Lucas had stage 4 high risk neuroblastoma.

Treatment began almost immediately with six rounds of chemotherapy, a stem cell transplant, radiation and six months of immunotherapy. He had a resection surgery where his main tumor and left adrenal gland were removed. He was admitted to the ICU after complications from chemotherapy before his stem cell transplant. During treatment, he suffered from lung, kidney and liver failure and was on dialysis.

Complications from the stem cell transplant were too much for Lucas to overcome and Lucas passed away on February 23, 2020. His mother Alisha said, “Our sweet little boy has touched and inspired more lives than most adults have. He taught us how to live fearlessly by smashing our way through the utmost difficult times with resilience, grace and dignity. He taught us that there’s always a solution to the problem and to never give up on our dreams. His personality lit up every room, his baby blue eyes shined with love and that troublesome smirk kept us on our feet. Lucas was a little boy who defied all odds from the day he was conceived to the day that he gained his wings.”

Learn more about neuroblastoma here


Together, we can make a difference.

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

NOMINATE GRH
Donate to ACCO

Gold Ribbon Hero: Jillian Duffy

Meet Jillian, an acute lymphoblastic leukemia survivor and is currently using her platform as Miss Connecticut 2019 to help raise awareness for childhood cancer. GRH Jillian

Jillian was a very happy and healthy 13 year old. She earned straight A’s and enjoyed dancing six nights a week. In October 2010, Jillian was unable to stand up at the bathroom sink to get ready for school. She was having trouble breathing, bruised easily and needed a break. A few weeks later, Jillian experienced a double ear infection and was convinced that there was something else wrong. Jillian’s parents took her to the pediatrician who called the following day to have her brought into Connecticut Children’s Hospital immediately. After tests revealed acute lymphoblastic leukemia, Jillian’s treatment started almost immediately. “I was scared, worried, anxious and wondered where I went wrong,” remembered Jillian.

Treatment for Jillian’s ALL included two and a half years of chemotherapy and a port placement. She experienced some side effects but chose to look at them positively because she knew that it was helping her body fight the cancer.

During her fight, Jillian never gave up, no matter how hard the road in front of her seemed. “From the first moment of treatment, I relied heavily on clinical trials, as her age fell outside the normal age range of diagnosis. During treatments, I suffered many side effects, the worst being a stroke in July of 2011. Because of research and clinical trials that had been conducted in the past, I was able to switch and continue my treatments. Although I still suffer from lasting effects of the stroke such as a memory and learning disability, I haven’t let it stop me from graduating high school on time and enrolling in college!”

Now, Jillian is a 10 year survivor and is flourishing as a childhood cancer advocate. She is currently in her senior year of Southern Connecticut State University.

Read Jillian’s survivor story here.

Learn more about ALL.

 

Together, we can make a difference.

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

NOMINATE GRH
Donate to ACCO

4 Ways YOU can help in the childhood cancer fight!

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Childhood cancer remains the number one cause of death by disease for children in the U.S. and around the world. Help raise awareness for childhood cancer by contacting your representative today.
Learn more here.

imageThe Kids First Research Act 2.0 would transfer to the Gabriella Miller Kids First Pediatric Research Initiative Fund at the National Institutes of Health existing and future funds derived from registered persons under the Federal Food, Drug and Cosmetic Act for penalties and fines from violations of laws. Take action here.

imageLast week, the Childhood Cancer STAR Act marked its second anniversary. Here is a progress report where you
can learn more about the most comprehensive childhood cancer bill. Learn more here.

Gold Ribbon Hero: Chase

Meet Chase, an 19 year old Ewing’s sarcoma hero. ACCO was lucky enough to speak to Chase directly in a video chat along with his new wife, Sadie and his parents, Brad and Kelli.

13726562_10206567847178900_7404735113292067136_nChase is a swimming enthusiast to say the least. He was a star swimmer on his team and during an out of town swim meet, he was having trouble.  Chase’s teammates were upset with him because they thought he was not putting forth the effort but when he teared up doing leg lifts his coach (and father) knew there was something more going on. His parents thought it was just a torn muscle after observing his swollen legs and when the family got back into town, they went to the doctor. An x-ray was taken and showed a large tumor on his femur. The following week, Chase had a biopsy and for the next year he had chemotherapy and multiple surgeries. At that point, he was declared to have no evidence of disease.
67924892_10214901474034363_6236773481409675264_nIn 2016, doctors found another mass near his femur and in his lymph nodes in his groin. Chemotherapy and radiation started almost immediately and in the summer of 2018, he was declared with no evidence of disease. Chase started a maintenance drug for the next two years and in March 2019, a small nodule was found in his lower left lung. Chase had surgery to remove part of his left lung with no radiation or chemotherapy. In April 2019, doctors found another tumor behind his esophagus and left lung.
He started chemotherapy at the Cleveland Clinic and met with a new doctor to assess the treatment plan. In April 2020, doctors discovered the cancer had spread to his shoulder, hip, rib, skull, and lungs. Chase elected to forego any hospital-stay chemotherapies and opted for radiation instead. “At this point, we are taking a tactical approach to treatment,” said Kelli, Chase’s mom.
It was at this time that Chase was given only a few months to live. His positive attitude radiates and he tries living every day to the fullest.

Chase credits his success in his cancer journey to his support system. “I am who I am because of these people. To me, before I was diagnosed with cancer, swimming was my world and my passion. That was my one love in life. Once I was diagnosed and matured a little bit [and experienced a few things] my support network and those people around me are my passion and my love in life…they keep me going every day.”

101614396_10163661013170113_7248504000654344192_oIn April, Chase married his soulmate, Sadie Mills. “Sadie has been regarded as my angel. She calms me down when I am spiked up and having trouble with pain. She is able to get my heart rate down.” Chase and Sadie began dating just six months before getting married and according to the couple, they knew they were soulmates from the beginning. After meeting at a swim meet and exchanging phone numbers, they texted back and forth for a few weeks. Finally, Chase asked Sadie on a date. The weekend that they were supposed to go out, Chase realized that he had his SAT test among other commitments. He explained it to Sadie who said, “If you want to go on a date with me, you will find time.” Chase knew after that comment that Sadie would fit right in with his family and lovingly calls her a “spitfire.” For the first couple months of dating, they had deep conversations which helped speed up their dating process. Within the first couple weeks, Chase knew that he wanted to marry Sadie.

Chase and Sadie got married on April 29, 2020 in her driveway where they had their first kiss. She walked down the aisle to Chase in the same spot where he walked her to the door. With the help of their sisters, Kaitlin and Savannah their wedding went off without a hitch. Their sisters engaged the community to come together and help throw the wedding of their dreams. When asked how married life was going so far, Chase said, “It’s been the best month of my life.”

wedding-13Faith has helped Chase and his family get through his cancer journey and Chase tells people any chance he can. “If you are positive everyday, at least you are taking something out of the cards you are dealt with.” Chase’s mom, Kelli suggests that parents should question the doctors until you get the answer you’re seeking. She says, “get a second opinion if it doesn’t feel right for you. It’s so easy to take what the doctor says. My son is not a number, he is not a statistic in the text books.” Both Brad and Sadie agree that Chase has taught them to cherish each day and not to waste them. 94259583_3125319150865666_1332054858127114240_n

Kaitlin, Chase’s older sister, wanted to shed light on siblings and their stories, since it affects them in other ways. She encourages siblings to reach out to other family members to talk.

Both Brad and Kelli had heard of ACCO before we reached out and encouraged ACCO to develop resources targeting siblings and dads specifically. From their perspective, sharing stories of children and their battles is essential because “it is a very lonely world in the pediatric cancer realm and there is not a lot out there for people to learn.”

Chase turned 19 on June 4, 2020. Please help ACCO send well wishes for Chase’s birthday and for a successful treatment and watch the happy couple’s wedding video below. 

Update: April 5, 2021

After a six year battle with Ewing’s sarcoma, Chase passed away on April 4, 2021. Read more here.


Together, we can make a difference.

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

NOMINATE GRH
Donate to ACCO

Gold Ribbon Hero: Eva

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Meet Eva, a forever 7 year old medulloblastoma warrior. Eva was a girly girl who always had her nails painted, loved playing with her brother Paddy and lived for ‘smuddles,’ a hug and squeeze from the ones she loved.

Eva was co-raised by her aunt, Tracy and her grandmother, Geraldine along with Tracy’s husband, Alan and brother, Paddy. 

When Eva started to become agitated and lose her appetite, her family took note. When her uncle got married, Eva was very quiet which was very uncharacteristic of her normal sassy self.  Two weeks later, Eva experienced a seizure while drinking milk. The seizure caused her to be unaware of her surroundings or her family in the room. When Geraldine called the doctor, they suggested just giving her an over the counter ear infection medication and said if things progressed to take her to the ER. Thankfully, they were able to fit her in on the same day and checked her ears. Eva was sent home with pain relief medicine.Screen Shot 2020-05-28 at 8.30.24 AM

Days before she was diagnosed, Eva started walking funny around the house and complaining of neck pain. She started demonstrating a head tilt and after many months of complaints and doctors visits, Tracy took matters into her own hands. After Eva had another seizure, Tracy took Eva back to the office and demanded to see a different doctor.  This time, the doctor looked into Eva’s eyes and knew something was wrong. She excused herself from the room and called the emergency room to tell them she had a patient coming down with either a viral brain infection or medulloblastoma. The doctor noticed a very heavy buildup of fluid behind her eyes which was alarming. When the doctor came back into the room, she told the family she suspected it was a viral brain infection and that she needed an intravenous antibiotic. The doctor sent Eva in for an MRI and on October 3, 2012, Eva was diagnosed with stage 4 anaplastic medulloblastoma.

At the time of diagnosis, the doctors said they found a “mass” on Eva’s brain. The thought of “cancer” never entered Tracy’s brain and she thought it was benign. “They told us there was a mass on her brain. And you know what’s really funny about that time is when they said there was a mass on her brain, I still didn’t think it was cancer. I genuinely didn’t even know that children get cancer, isn’t that ridiculous?”

Five days after diagnosis, Eva had brain surgery to remove the golf ball size tumor. During her surgery, doctors noticed that the tumor had spread around her head and down her spine which they couldn’t touch. She was considered to be stage four at that time and was given a 30% chance of survival. During her 12 hour operation, Eva needed a blood transfusion and was watched a few days afterwards to see if she needed a shunt placed. Unfortunately she developed an infection in her brain and recovered quickly.Eva 2012 Pose

Eva was the second child in Ireland to receive the Milan protocol for the aggressive treatment of medulloblastoma. From reports, it was promised to give great results. She received a total of 12 months of chemotherapy, 6 weeks of radiotherapy twice daily and two stem cell transplants. As a result of treatment, she had nerve damage that would ultimately confine Eva to a wheelchair.

In June 2013, active treatment was complete and Eva was considered to have no evidence of disease. The next month however, Eva started to fall for no reason. Tracy called the oncologist who brought her in for another MRI. Another mass was found on her brain but not in the same spot. They found three particles but doctors did not think it was cancer. By October of 2013, Eva was unable to walk. She had lost all function and reverted into a baby. She had no control over her body, wore diapers and could not feed herself. Eva was still mentally and intellectually a four year old but unable to control her body.Screen Shot 2020-05-28 at 2.42.43 PM

When Eva lost her hair she looked at Tracy, gasped and said “look Trace, can you put that back in?!” Tracy took the hair and hid it behind her back and told her a “tall tale” about how some boys and girls hair go on a special adventure and that Eva’s hair is going on an adventure of its own which sparked an idea in Tracy. From then on, she’d tell Eva silly tales of adventures that “Hair” would go on, which became a character in their household.

Eva’s dream was to meet a princess, specifically Cinderella and for her Make-a-Wish, she was able to meet Cinderella in Disneyland in Paris. When she finally met Cinderella, Eva was completely speechless and in “awe” of her. That evening, the family was even able to have a dinner with Cinderella.

After missing so much school, Tracy decided to send Eva to a specialized school which would help with inhouse physical and occupational therapy among other specialized treatments. The school was almost 60 miles away but Eva loved it. She enjoyed the bus ride and would tell  her family about her adventures every day. She would get her aide to help her play pranks on the principal and give silly nicknames to the bus driver.IMG_9749

Eva was put into a program at Stoke Mandeville hospital which helped her spine and brain. The family changed their life completely by changing their eating habits and supporting her immune system with the most natural ingredients. She seemed to be making good progress and even learned to feed herself again. At this time, Eva was even able to stand for 20 minutes with a standing frame.

In October 2015, Eva had seemed agitated again and by the end of October she complained of a sore neck again. She would cry at the drop of a hat and did not seem like she was in a good place. At her next doctor’s appointment, Tracy told the oncologist about her neck pain and was encouraged to wait for an upcoming MRI. Eva’s family was already aware that if she had a relapse that there was no more treatment available to her and if the treatment didn’t work, the options were to participate in a trial or to simply do nothing.

“In that entire three year period this was the only appointment I could not go to. I could not hear what the guy would say, so I sent my husband. I knew in my gut that something was wrong. I texted my husband throughout the day asking for updates. Now looking back, it was a coy way of saying nothing, but to me – it looked like hope and I took it. He responded with ‘all was well, the doctor wanted to see her again and we are on our way home’ and I didn’t think anything of it” said Tracy.

The oncologist said that there was a new trial that had existed however he felt that Eva had enough treatment and suggested morphine. Heartbroken, Tracy and her family decided to bring Eva home and keep her out of school in the middle of November. Unfortunately, Eva gained her angel wings in November of 2015.

IMG_9801Eva’s legacy lives on in the series, “Eva’s Adventures,” which is Tracy’s passion project. She wanted her legacy of helping people to live on and has gone on to open up a charity of her very own and a park which features a “smuddle” park bench. They have held various fundraisers which has enabled the family to donate funds to other families in need and for cancer research in Ireland.

It should be noted that in late 2014 the oncologist that initially introduced Eva into the Milan protocol presented Eva’s case at a conference.  He met several other doctors that had the same experiences with the treatment. Since then, the Milan protocol is not being utilized in Ireland. 

Follow Eva’s Adventures and Tracy on social media below.

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