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Gold Ribbon Hero William H

Gold Ribbon Hero William H

“Reason this person is a Gold Ribbon Hero: At age 2, Will was diagnosed with Stage 4 Neuroblastoma. He has undergone surgeries, chemo, radiation, immunosuppressant therapy – all in CA, away from his older sisters and a lot the time, his mom (dad was with him).  He continues to suffer from as cites and may be facing a liver transplant but this little guy is always smiling!  No matter what happens, he has a beautiful smile on his face.  His last scan showed no cancer!  Keep fighting Will and stay strong!” – Sue S

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Gold Ribbon Hero Knox G

“Reason this person is a Gold Ribbon Hero: Knox is one amazing little fighter. I remember the day we got the news… almost one year ago. We were traveling to Phoenix, AZ last October for vacation. The first night there he started looking sick. He couldn’t keep anything down. We took him to minor emergency and they sent us home with orders to rehydrate because he showed typical signs of dehydration. The next day we went to the emergency room because there was no improvement. The doctor admitted him after pleading with him and it was in the unit that the doctor on staff noticed neurological issues. They thought for sure it was viral encephalitis and we were prepared for an MRI and an LP then shunt placement. When the MRI team returned with my son and the news that they no longer needed the LP, I knew. There was a mass in the brain. I happen to be a nurse… a pediatric oncology nurse as irony would have it. Were there symptoms I should have seen earlier? Was it something I overlooked. I – of all people – should have seen this. I definitely didn’t. I hit me like a freight train. I will never forget that day. Knox had a craniotomy to remove as much of the tumor as they could. After surgery he suffered an ‘ischemic attack’ as they called it. He has since been slightly weaker on his right side and has no peripheral vision. His tumor was situated right on top of his optic nerve, up against his hypothalamus. It took about a month Phoenix before we were allowed to return home. They were stumped by his tumor. They said it looked like a grade 1 Astrocytoma, but the rate in which the cancer cells replicated was similar to that of a high-grade. So after 2 second opinions, Knox was diagnosed as a grade 3 Anaplastic Astrocytoma. We began Proton Radiation in December – even though he was only 3-years-old at the time, the doctors felt the need outweighed the longterm risks to his brain. He now suffers from Hypothyroidism, Adrenal Insufficiency, overeating issues, attention issues and learning disabilities. If you met Knox on the street, you would never know of the battle he fights daily. This kid is so personable and friendly. He makes friends everywhere he goes and his story is such an inspiration to all. He truly is amazing. This ‘situation’ has put all of our lives into perspective. It has made me pause and reevaluate what is important to me, to not take things for granted… and the number of days I get to spend with this little boy will not be wasted.” – Kristen G

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Gold Ribbon Hero Raeleigh M

“Reason this person is a Gold Ribbon Hero: Raeleigh is a Gold Ribbon Hero because she has been the fighter God made her to be. On January 15th, 2016 at 15 months old our daughter  Raeleigh was diagnosed with neuroblastoma stage 4 high risk due to the tumor and it being in her bones and bone marrow. Her tumor that was found in her abdomen was the size of a cantaloupe. Before finding out her diagnosis Raeleigh started sleeping more, profusely sweating, having stomach issues, pain and also very high blood pressure which we found out the day she was diagnosed. All of this was due to the size of the tumor pressing on her organs. So far Raeleigh has had several tests/scans done such as CT scans, MIBG scans, 2 bone marrow biopsy, tumor biopsy, hearing tests, EKG’s, chest xrays, ultrasounds, and several others. She had a vascath put in to collect her stem cells. She has had 5 rounds of chemo, surgery to remove the tumor that was still the size of a softball after shrinking 50%. Before starting transplant scans showed Raeleigh’s tumor site was clear and her bone marrow and MIBG scan showed less than 5% left. She has undergone 2 high dose chemo treatments and 2 stem cell transplants. Also after her 2nd round of chemo Raeleigh got septic which was very scary. She stopped walking for about a month. She is now about to start radiation and will also have 6 months of immunotherapy. Even having gone through all of this there is not a day that goes by that she doesn’t have a smile on her face. She has been our strength at times when we thought we were being hers. She is such a blessing to us all. We ask that you please continue to pray for her. She is our our little Princess Warrior.” – Joshua M

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Golden Ribbon Hero Kale’s Story

Kale’s Story: Astrocytoma Brain Tumor

acco_chicago061516-3566“Everything you think you know about cancer, until you’re living it, you don’t know anything.”

Barely two years old, Kale has been fighting childhood cancer for most of his short life. At his routine four-month check-up, his mother asked the pediatrician about some strange symptoms she had noticed: his head seemed slightly larger than normal and his eyes fluttered back and forth in an unusual way. Although the pediatrician did not have any immediate concerns, he recommended a follow-up visit with an ophthalmologist just to be sure. The ophthalmologist, however, was immediately concerned. His exam quickly revealed unusual swelling in the optic nerve (the nerve responsible for communication between the eyes and the brain). He recommended that Kale’s parents take him to a hospital right away for additional testing.

The results were devastating: Kale had hydrocephalus, or a build-up of fluid around the brain, caused by astrocytoma, a type of brain tumor. Astrocytoma forms from the “glue-like” tissue that supports the brain. In Kale’s case, the tumor had grown in place of the tubes that allow the brain to naturally release fluid to be reabsorbed by the body. Moreover, although Kale’s tumor was diagnosed as Grade 2, it had already metastasized to his spinal column and would needed to be treated as if it were Grade 3. Kale’s parents were told that the odds of Kale’s survival were low.

acco_chicago061516-3587“We never knew what to expect from one day to the next.”

The emotional rollercoaster described by Kale’s mom began that very day. The first challenge was releasing the fluid pressing on Kale’s brain. Doctors first tried an AP (arterioportal) shunt that would allow excess fluid from the brain to drain into the stomach where, in theory, Kale’s body would naturally reabsorb it. Unfortunately, Kale’s stomach quickly became overwhelmed with fluid, which in turn led to breathing problems. After manually draining the fluid from his belly six times, doctors turned to a VP (ventriculoperitoneal) shunt, which drained the fluid into his heart, where it could be pumped around the body and reabsorbed through the blood stream.

Having coped with the hydrocephalus, Kale’s oncology team turned to fighting the tumor. The diffuse nature of the tumor made surgical removal impossible. While brain tumors in older children and adults are usually treated with radiation therapy, radiation is not recommended for children under the age of 3 due to the high risk of long-term damage to the delicate tissues of the brain. Kale began his first round of chemotherapy just two weeks after his initial visit to the ophthalmologist. Now into his third round of chemotherapy, Kale’s tumor is not shrinking but it is also no longer growing. While his parents hope that the treatment will eventually begin to shrink the tumor, they also realize that the tumor could also begin growing again at any point. “We are living in fear of the future,” states Kale’s mom, “it’s like there’s an angry beast attacking our child, and there’s nothing, as a parent, I can do about it.”

acco_chicago061516-3529“We are not alone.”

Kale’s mother clearly articulates the emotional challenges many childhood cancer families face when they first hear those words: your child has cancer. “It’s a whole new world,” says Kale’s mom. She describes how they learned to navigate the medical terminology needed to understand the treatment protocols, how they learned how to operate the medical machinery needed to monitor Kale during chemotherapy. Yet despite never knowing what was going to come next, they continue to fight, every day, for Kale’s life.

Even in the darkest moments, they have found some comfort in discovering that they are not alone, that there are others who feel the same way, that there are others fighting the same battles. Kale’s name is on this year’s Childhood Cancer Awareness Shirt, one of more than 5,700 children featured on the shirts. Kale’s mother notes that seeing so many names brings a mix of emotions: sadness that so many children have had their lives turn upside down by childhood cancer, but also comfort knowing that there are other families who understand what Kale is going through. “Seeing the names helps us feel that we are not alone.”

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.

To submit a Gold Ribbon Hero’s story, please Click Here

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 , call 855.858.2226 or visit:

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

Gold Ribbon Hero Shelby F

“Reason this person is a Gold Ribbon Hero: Shelby beat Pre-B Cell A.L.L, but know is battling PTSD, Avascular Necrousis in both legs and has four knee surgeries to try and help, a scarred down lung from having pneumonia and a fungal infection to many times, memory and focusing issues from chemo, severe panic attaks and night terrors from the PTSD caused by battling cancer, and also has a service dog to help with the above issue including the knees, memory and focusing issues, and PTSD. Shelby definitely deserves this, cancer left her with all this and took a piece of herself away in the process.” – Lori T

 

 

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Gold Ribbon Hero Damon B

Reason this person is a Gold Ribbon Hero: My son Damon is 12.  He was diagnosed with Osteosarcoma at age 9 Jan. 31, 2014.  He instantly made became a viral sensation when Pharrell Williams sent him a very inspirational video: [https://youtu.be/KtX54oQlLyk]  In the video Pharrell said Damon would do wondrous things and inspire many.  Damon took that to heart.  Damon has never been mad, sad or anything about his cancer.  He had a limb-salvage surgery April 2014.  His entire humerus was dead and he had a massive tumor.  They managed to save his arm.  He then endured another 10 months of very hard chemo.  Jan. 2015 he was declared Cancer Free.  Damon continued to inspire many.  In 2015 He was given the Courage Award from the Sarcoma Foundation of America and the Shining Star Award from The Ferrari Kid.  He became the spokeskid for the WNBA Silver Stars cancer program, San Antonio Rampage, he was part of the advertising campaign for University Health Hospital in San Antonio, he was featured on Entertainment Tonight [https://youtu.be/Jxhls6MaXPc] and more. November of 2015 the osteosarcoma cancer returned in his arm.  At this point the only way to save his life was the amputate his left arm.  It is a high amputation (cut into his clavicle).  Do you know he told the doctors not to feel bad.  He didn’t want them to hurt or feel bad for having to cut off his arm.  He said he understood and was okay with it.  Yes….he’s only 12!!! He was in the news in May when he finally met Retired LTC Touchet.  Damon had inspired LTC Touchet for 2 years and the two talked back and forth.  When they met it was very emotional for the two of them:  http://www.ksat.com/news/young-cancer-patient-resilient-spirit-continues-to-inspire Recently Damon wanted to help the other cancer kids at University Hospital.  He wanted a bell for them to be able to ring when they were done with their chemo treatments and declared Cancer Free.  He admires Firefighters, so he thought a FireTruck Bell would be the best.  Through his efforts, not only did the San Antonio Fire Chief help get Damon a bell, the two of them found a way to not only have this bell be a Beacon of Hope to kids with cancer, but a way to honor those firefighters who passed away with occupational cancer.  On 25 Aug 2016 Damon, the San Antonio Fire Chief and the Mayor of San Antonio, Mayor Ivy Taylor, presented the bell to the hospital: http://news4sanantonio.com/news/local/cancer-survivor-firefighters-donate-cancer-bell-to-university-hospital-08-25-2016 Coming soon he will be featured in a Comic Book from MediKidz to support Osteosarcoma.  He is also writing a book about Cancer for other kids with Cancer to let them know you can still be Happy!   There are Super Heroes and there is Damon!  Damon is by Far, MY HERO!!” – Brian B                 

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Gold Ribbon Hero Arie B

Reason this person is a Gold Ribbon Hero: Well the first 11 months went great we couldn’t ask for better from a 29wk gestation baby. With only little minor colds & fevers with vaccines. A
few weeks before Arie 1st birthday she started wheezing and had on/off fevers.
She was diagnosed with what Dr. was calling “reactive airway” and “upper
respiratory infection.” A few days pass no changes, we return to the Drs only
this time fever not breaking so we walk out the office with another diagnoses of
an ear infections.

A few day later when getting Arie ready for a bath her diaper was full of blood clots. Of course we stay calm and call the Doctor the next day. We go to the Doctor and he want to “watch” her to see if it get better. Well it got worse and fact and started spiking fevers.  Now it time for further medical intervention.
So we’re at CNY Diagnostic getting the ultrasound done. As much as we wanted to leave cause we felt things was normal but the tech came back to tell us the doctor is on the phone. My life changed all I heard was the pediatrician say that there is something……. Dad finish the conversation with the doctor. The tears fell all night. Sept. 19, 2013 we heard “Yes your one year old baby has cancer”. She has a tumor that is pushing up on her diaphragm and it needs to be removed now. So this is the cause of the wheezing, fevers & blood in her urine.

On Sept. 23, 2013 surrounded by family & friends Arie was walked into the operating room to have her right kidney and the tumor removed.

Well the study came back and our world was crushed, why us. Again we heard some new we didn’t want… “We are sorry but Arie has a rare form of cancer that is normally not found in kids. It’s more aggressive and can hide in her bones. She has Clear cell carcinoma of the kidney.” We need to do stronger chemo and change her regime. There would not have been any changes in surgery or radiation that she already received
Throughout Arie life she dealt with a very suppressed immune system, chemo, radiation, blood and platelet transfusions and multiple hospital admittions.

On July 8, 2014 after being in the PICU 15days. Arie became our angel and took her last breath. She did not have the lung maturity to fight the pneumonia she was diagnosed with.” – Kimberly G

 

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Gold Ribbon Hero Zachay H

Reason this person is a Gold Ribbon Hero: My Grandson Zachary S Hormell is a Gold Ribbon Hero. He battled HCC Pediatric Liver Cancer for 1 1/2 Years and Cancer took his Life on 9-11-2016 But he was such a trooper he never complained or asked why me. He was so strong in his fight But God gave him the ultimate gift and took him Home to Heaven after Cancer ravaged his Body.If you would ask him How he was doing he would say I am Fine.Zachary was in line to get a Liver transplant and when he received his pre surgery scan they found the Cancer had Spread. He celebrated his 13 th Birthday with all his family with him and 3 weeks later he grew his wings on 9-11-2011 His Family misses him so very much. His Mother Larissa, Dad Scott Hormell and 2 brothers Steven and Scott Jr. and 2 Grandmothers Anna Mae and Pamela” – Pamela S

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Gold Ribbon Hero Riley S

Reason this person is a Gold Ribbon Hero: Riley has just turned 5 years old and after several tests to find out why she was not feeling well and running a fever, they found Riley has stage 4 neuroblastoma and is also in her bone marrow. Riley is the beautiful daughter of Rick and Kristin Sherman and big sister to Matthew   from La Quinta CA.  Riley has had several tests done on her and has recently had two surgeries to remove a tumor that was pressing on nerves and her spinal cord that had left her unable to walk.  Riley is such a vibrant little girl who even with dealing with this horrible cancer, still always has a smile on her face that would light up a room!  Where this family should have been preparing their baby girl to go to Kindergarten this year,  they were having to prepareher for chemo. Riley will need to have 12-15 months of chemo/radiation and stem cell transfers.  No child should ever have to go through this.” – Kim T

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Gold Ribbon Hero Carena S

Reason this person is a Gold Ribbon Hero: She sends out care boxes out to kids that have cancer. To cheer them up and take there minds off of whats going on in there life for a little while. She has a web page on face book. Its called CC Care Box.
She collects donations of hand made stuff and store bought from people that are in her group on facebook. She pays the shipping of the boxes out of her own pocket. She does alot of fundraiser. For childhood cancer.” – Dee T

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