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Gold Ribbon Hero: Grace

Tag Archives: Gold Ribbon Hero

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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Brae 1Meet Braeden or “Brae” as his mom lovingly calls him. He’s a three year old,  fun-loving “ladies man” who is wise beyond his years. Brae’s mom, Kendra noticed in January of 2018 that he was whining a lot. She took him to get checked out several times and after being told he had pneumonia, the flu and even being tested for having swallowed a toy, doctors decided to do a biopsy on his back. Doctors took a sample of the mass they found in his lungs and the diagnosis was clear. “On May 5, 2018, Brae was diagnosed with AML leukemia with a genetic mutation of monosomy 7. We just found out about the monosomy 7. Basically that means that Brae has 45 chromosomes instead of 46 like everyone else.”

Kendra was faced with a tough decision when it came to Brae’s treatment plan; get a bone marrow transplant and face three rounds of chemo with a 30% chance of relapse, or five rounds of chemo with a 60% chance of relapse. Kendra ultimately decided against the transplant and is happy to report that after Brae’s first round of chemo, his bulky tumor is gone. Doctors have continued to treat Brae with four more chemo rounds.

Brae 2Fortunately, Braeden is facing treatment like a little soldier; the only side effect he has experienced was hair loss, which he doesn’t seem to mind. Kendra notes that everytime he goes into the hospital, the nurses fight to work with him and that he charms them. She said when Brae is at home, he loves to watch tv with his big brother and play outside. He’s particularly interested in art and loves to paint. When he goes to the hospital you can usually find him in the art room playing with the popsicle sticks and paint.

He mom happily informed us that he is currently ‘doing great’ after his fourth round of chemo. Through it all, Braeden is a positive and happy three year old.

Incredible Strength and Courage

“Reason this person is a Gold Ribbon Hero: I think my grandson is a Gold Ribbon Hero because from the time he was diagnosed with high risk ALL at 9 months until present day, 32 months old, Korbyn has displayed incredible strength and courage. As his grandmother, I am amazed how he has endured the treatments he has received – countless rounds of chemo, clinical trial chemo, weekly central lines bandage changes, radiation and a bone marrow transplant. Sadly, none of this treatment has kept Korbyn’s cancer away. We are all thankful Korbyn was accepted for a clinical trial at CHOP for CAR T cell therapy. Korbyn and his parents will travel from their Oviedo, FL home to Pennsylvania in July and will be there for 6 weeks for treatment. Korbyn never met a stranger and puts a smile on the nurses, techs, doctors faces day in and day out. There is nothing sweeter then his smiling face, blowing kisses and giving bear hugs, never waivering his dynamic personality. I tell anyone who will listen, Korbyn is my hero. We would love for you to follow Korbyn on this next adventure on his facebook page, KORBYNS KOURAGE. Please feel free to share and follow.” – Cindy R.

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ACCO_Chicago061516-2550We would like to extend our thanks to Sophia and her family for helping represent the face of childhood cancer at Jel Sert’s PJammin’® event on June 15. Led by Jel Sert President Ken Wegner, this first-ever corporate PJammin’® event involved the participation of more than 200 Jel Sert employees, as well as Sophia and other children whose lives have been impacted by childhood cancer. Sophia’s participation in this event highlighted the real difference that that these events can have for children battling this devastating disease.

Sophia’s Story: Acute Lymphoblastic Leukemia

Today, Sophia looks like a healthy, active, happy 8-year-old girl. Always “spunky”, as her mother Blanca describes her, in late 2013 Sophia’s parents could tell something wasn’t right. She seemed to have lost that natural spunkiness. Often sick with strep throat, ear infections, colds, and fevers, she simply wasn’t her normal, active self. When her parents noticed a lump under her chin, they took her to the pediatrician, who prescribed antibiotics for a potentially swollen lymph node. When the fevers and lump had not resolved by the scheduled follow-up visit on January 3, the pediatrician scheduled blood work. The results were devastating: Sophia had Acute Lymphoblastic Leukemia, or ALL. The pediatrician told Blanca to arrange care for her other children, pack a bag for Sophia, and bring her to the hospital immediately where an oncology team was waiting to start treatment.

ACCO_Chicago061516-2719“Everything happened so fast but at the same time so slow. All these procedures and medical terms were new to us. We had to make decisions no parents should have to make. We had to hide our worries and sorrow from Sophia and her siblings. The first couple of weeks were very hard.” Blanca describes so well the turmoil of emotions felt by parents suddenly thrust into a whole new world by their child’s cancer diagnosis. Navigating through this new world—coping with informational overload and making critical decisions affecting the health of your child, while at the same time calming your scared, sick child and caring for other siblings—may be a parent’s worst nightmare.

Sophia’s chemotherapy began immediately with surgery to place a port-a-cath, or “port” for short, a surgically-implanted catheter that enables chemotherapy to be administered directly into the bloodstream while reducing the need for needles and IVs. Unfortunately, the treatment didn’t progress as smoothly as Sophia’s oncology team and family hoped. First, her platelet counts were too low, so she required several blood transfusions. She was finally able to go home, only to return because the site of her port became infected. The port was surgically removed, but Sophia was left with an open wound that required her to remain in the hospital for several more weeks. Another surgery to place a second port was more successful, this time healing properly so it could function throughout the remainder of her treatment. As Blanca so eloquently states: “Her little body took a lot, with the surgeries, open wound care, and all the hard blood draws due to her small veins. It was torturous for her and us.”

When Sophia was not in the hospital, she endured months of isolation at home to avoid the risk of infection due to a compromised immune system. She missed preschool and many months of kindergarten. Still, her family attempted to maintain as “normal” as life as possible, and even welcomed the birth of a new little brother, Lucas (as if coping with childhood cancer were not difficult enough, Blanca was five months pregnant at the time of Sophia’s diagnosis). Helping Blanca care for Lucas made the time at home pass more easily for Sophia!

An Ongoing Journey

Sophia’s treatment for ALL ended in April 2015 and despite frequent testing—a common part of every childhood cancer survivor’s life after treatment—she has finally recovered her normal “spunky” nature! Her mother credits her for being so brave, cooperative, and helpful through every stage of this difficult journey. Sophia and her family understand that childhood cancer is an ongoing journey, but are thankful that they can fight it together as a family; as Blanca notes, “We are all in this together!”

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

Nico’s Story

nicoWe have been asked to share the story of a very special childhood cancer warrior, Nico. Diagnosed with Stage 4 Osteosarcoma at the age of 6, Nico is in the final months of chemotherapy and is anticipating the results of several very important scans and tests that will confirm—hopefully—that he has finally beaten this disease. Throughout his treatment, Nico has shown strength and resilience beyond what we might expect from a young child, facing every new turn of events with a smile for his doctors and his family and giving inspiration to an entire community, both local and nationwide. This community now offers their hopes and prayers to Nico and his family for a successful end to this brave childhood cancer warrior’s long cancer journey!

Nico’s Cancer Journey

On April 28, 2016, Nico turned eight years old. Of course all boys love to celebrate birthdays, preferably with as much birthday cake as Mom will allow! For Nico and his family, however, this birthday is particularly special because it brings them within sight of the potential end of scheduled chemotherapy in July. And it is particularly special because, as with all childhood cancer warriors and their families, every birthday is one more victory in the fight against this terrible disease.

Nico began his cancer journey in October 2015 with the devastating diagnosis of osteosarcoma, a form of cancer in which one or more cancerous tumors begin to grow on a bone. In Nico’s case, the tumor was located on a rib bone, close to his lungs. In many cases, osteosarcoma, the most common form of bone cancer, is diagnosed early in its development, greatly increasing the chances that treatment will be successful. In Nico’s case, however, the news was not good: Nico’s cancer was diagnosed as stage 4 osteosarcoma, meaning that the tumors had metastasized (or spread) from the original tumor location into other areas of the body. His team of oncologists located nine rapidly-growing nodules, or tumors, in his lungs. Devastated by this news, Nico’s family agreed to begin chemotherapy immediately.

After his initial round of chemotherapy, the next major milestone occurred in January, just three months after the initial diagnosis: Nico’s oncology team surgically removed the original tumor, along with four ribs, and performed thoracic surgery in the left lung to remove nodules. Chemo was on-going before and after the surgery, but in April, Nico began having seizures and doctors diagnosed a large mass in his brain. He underwent a second surgery in May to remove the mass, but unfortunately, this complication affected his mobility on his right side, and now in addition to chemo, Nico has regular therapy to overcome these mobility problems. Then, in August, a scan showed the formation of more nodules in the left lung, which were again surgically removed.

11205598_1104852616197688_1488926781192503769_nThroughout this long journey, Nico has continued to undergo both in-patient and out-patient chemotherapy to target any remaining cancerous cells and prevent the growth of more. Now, as his family begins to anticipate the end of his scheduled chemotherapy, his tests are showing positive signs: no additional nodules have formed and some remaining lesions in the lung have shrunk. In fact, Nico’s doctors believe that the suspicious lesions may be residual scar tissue from the two prior surgeries.

The Waiting Game

The final months and weeks of cancer treatment can be a challenging time for families. Parents, siblings, and the patients themselves are excited at the prospect of a “normal” life, yet it’s also a time of high anxiety, especially for parents, as they anticipate what the next bump in the road might look like. As Nico’s Mom states, “I am now grilling the doctors with endless questions about [the] post-treatment process, prognosis, side effects…a good place to be but I may be driving them nuts!”

Mostly, this phase of treatment is about waiting, hoping, and praying. Waiting for the final tests to show that the last of the cancer cells have finally disappeared from Nico’s young body. Waiting for that one last test to make sure, really sure, that those shadows really are just scar tissue and not more cancer nodules. Waiting for the next follow-up visit to make sure, really really sure, that the cancer has not returned.

Yet throughout his journey, and in this final stage of waiting, Nico’s amazing and positive attitude has never wavered. He has shown his family and his community just how strong, just how brave, one small boy can be. Nico and his family hope that you will wait with them, offering them your ongoing prayers, best wishes, and support, as they face this phase of the cancer journey with the same strength and determination that has seen them through their journey thus far.

If you would like to follow Nico’s journey and show his family your support, we encourage you to visit the Team Nico Facebook page at:

https://www.facebook.com/Team-NICO-987643321251952/timeline

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship.  Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world.  At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time.  Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about other childhood cancer warriors, to learn more about childhood cancer and the ACCO, or to order free resources for you or your child, please visit our website at www.acco.org.