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Tag Archives: Gold Ribbon Hero

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.

korbyn-in-ec-hat

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:

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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.

ACCO