As told by Braeden’s mommy…
“Bub was diagnosed with stage three, high risk neuroblastoma and opsoclonus- myoclonus ataxia syndrome on May 15, 2007 (the day before his second birthday). He completed six cycles of chemotherapy, surgery, high dose chemotherapy and bone marrow transplant, radiation, and began a year of retinoic acid therapy, but relapsed in August, 2008. He began chemo again, but this time his cancer did not respond. Surgery removed all visible tumors in October, but they returned a month later. Braeden was supposed to begin MIBG therapy in December, but due to the cancer's rapid growth he developed complications. He was hospitalized on December 12 for high blood pressure, released on December 14 and readmitted the next day for kidney failure. He received more chemo and began radiation to try to shrink the large tumor that was causing kidney problems and pain. He was in and out of the ICU. On January 15, 2009, scans revealed that Braeden's cancer was unresponsive to radiation, and his health was failing. The horrible decision was made to stop treatment and focus on keeping him comfortable for the time that remained. He returned to our regular floor in the hospital from the ICU after a celiac plexus ablation to stop the severe nerve pain from his tumor. Braeden then came home from the hospital under hospice care on February 11, 2009. He received a wonderful wish from the Make-a- Wish Foundation on February 13th (a new tv, a Wii, games, DVDs and new toys!). Thank you, Make-a- Wish!
Braeden spent a wonderful two months at home with his family. At 2:27 am on April 18, 2009, our little Super Hero was called home to heaven. He is now healed, whole, and happy, but he left a huge hole in so many hearts. He was a bright star, on fire for life and he will forever be loved and missed by so many, but most of all by his Mom, Dad, sister, and brothers.”
At 36 weeks into my pregnancy, Rylan’s tumor was seen by a co-worker during an ultrasound. We thought it was a cyst. He was born at 37 weeks and I told his pediatrician that we saw a cyst on his left kidney. She ordered a renal & bladder ultrasound and had me take him back 2 weeks later to do a comparison finding. Unfortunately, they soon admitted him for further testing where they found out that he not only had the tumor of the left adrenal but it had metastasis to his liver. When we got the results back from the biopsy they thought it was an error because he had MYCN amplified which made him fall into a rare case and into the high risk category. Our journey began on 3/7/16 with 6 cycles of chemo, surgery & losing his left kidney due to the tumor resection, 1 stem cell transplant in 9/6/16, 4 weeks of radiation and 5 cycles of immunotherapy. We finished treatment on 3/30/17.
I could tell you this journey was not a easy one but I'm so proud of my little man, he went through all of this like a little warrior. We thank god everyday for the miracle he has given us and done in our son and continues to do every day of our lives. He is now 16 months and doing awesome.
Jase was diagnosed with stage 4 high risk neuroblastoma that had metastasized (spread) to his many of his bones and skull in October 2015 at 20 months old. He underwent 6 rounds of chemo, tumor resection surgery, 2 bone marrow transplants, 20 rounds of radiation, and six months of immunotherapy. Jase had a rough start landing in ICU on a ventilator which collapsed his lungs. He endured 1 ½ years of treatment. He is 3 now and just finished his treatment protocol in April of 2017. He has moderate hearing damage and wears has hearing aids, is learning delayed and has a food aversion as a result of years of toxic treatments. Jase's cancer diagnosis has turned our lives upside down. Mom gave up her career as a paramedic/firefighter. Our family relocated over a thousand miles away to increase Jase’s odds of surviving a three year prognosis by an extra 13%(73% in total). It has been difficult to move away from a major support system however, to save Jase’s life it was worth it. Dad now has a county job and mom is Jase’s personal CNA. Why should Jase not get more than 4%? Why should Jase live far away from family to fight so long for his life? He shouldn’t! Jase is why we fight for better at Kellen’s Krusde.
Hannah was diagnosed at age 3 with Stage 4, HR neuroblastoma, non-amplified. She was
misdiagnosed for almost 3 months with viruses, colds, and TEC (anemia.) She had an
enlarged lymph node on her neck that was removed via surgery, and they sent us home
from the hospital saying her symptoms had resolved and everything looked great. A week
later the lab biopsy came back with neuroblastoma cells in her lymph node, meaning her
primary tumor was elsewhere and the cancer had already spread through her lymph
Hannah did frontline treatment which consisted of 6 rounds of chemotherapy then a tumor
resection. She went into a stem cell transplant with cancer still in the lymph nodes around
her heart. After 20 rounds of proton radiation to clear these lymph nodes, Hannah's
surgeon and radiologist decided to surgically remove them. During this surgery, her lymph
system was damaged and she had a chyle leak. This is when the lymph fluid leaks into the
digestive system causing dangerous outcomes. Hannah was able to recover from this but,
needed 20 additional rounds of radiation to her neck. She successfully moved from that
stage of treatment to the most important phase, immunotherapy. She finally had clear,
disease-free scans in September of 2016.
We've been given some time back with our baby. We are forever grateful that she has
survived this tough regimen so far. We know we are one of the lucky ones and continue to
fight for more support and research for this devastating disease. It's time to focus on these
so-called rare cancers and create better systems for battling them. When we started
treatment, we called Hannah the Tiny Warrior because she looked so small in the hospital
beds. The name has stuck, and we are forever proud of our girl.