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Faces of Neuroblastoma Ayden Frail

Meet Ayden Frail


When asked his last name, 38-year-old Branndon Frail, father of 8-year-old Ayden Frail, spells it, "F-r-a-i-l,"and then pronounces it, "Frail, as in fragile. "But what the ensuing conversation suggests is anything but, neither Ayden, nor his father, nor his mother Jenny, nor his sister Siddalee are frail.  They are, instead, the strong and brave, soldiers in a battle against a deadly and insidious disease:pediatric neuroblastoma.
"Ayden always was very mature.  He saw what the treatment was intended for. He looked at it as a soldier,"said Branndon.  "We're a family of great faith and he adapted his own understanding of our faith, our Catholicism, to how he was going to approach the treatment with great stoicism."
Ayden began his cancer journey at the age of 4.  What started as lethargy, night sweats and constant constipation that would force him to walk on his tiptoes turned into unrelenting abdominal pain.  A week later, swollen lymph nodes were a call to action, and an ultrasound revealed a tumor the size of a cantaloupe on Ayden's adrenal gland.  More tests followed before a diagnosis was confirmed: Stage IV neuroblastoma.
Ayden spent the next 16 months at a hospital in San Antonio, Texas, near his family's home, undergoing the accepted COG (Children's Oncology Group) treatment protocol for neuroblastoma.  "Besides one instance of a Code Blue, he made it all the way through treatment as well as any doctor would ever want,"said Branndon.  "He responded well, he stayed strong and he came through it NED (no evidence of disease)."
Ayden was so strong that he skipped right past kindergarten and started first grade. He did amazingly well, made friends and blossomed socially.  And Ayden's family was able to breathe a little easier.  Their case was considered a success within the neuroblastoma community -they were statistically on the winning end, part of the 30 percent of children headed toward beating neuroblastoma by surviving beyond five years.
"We were able to shift a little bit of, I guess it's called, expectational grief,"said Branndon.  "You're expecting the other shoe to drop, and that's kind of how you live. We did that a long time as a family, and it took its toll.  My wife of 16 years and I divorced.  Of course there were many factors, but we both agreed that it was cancer that caused an emotional shakedown of sorts. "But the family, as shattered and beaten down as it was, remained united in its primary focus: Ayden's battle and his well- being.
"There's a loss of every tactile thing you thought was important.  You lose your car, your home, the kids lose their security,"said Branndon.  "Those things seem like big things, but they're OK.  What we're looking for now are the things that no one should worry about, like 'Did he have a successful stem cell harvest,''What are his platelet counts,''What is his ANC (absolute neutrophil count).'These are things now that determine the daily capability of your family. ...'Can we pay the mortgage' doesn't matter because we'd live in a cardboard box if we knew we could have our child there with us."
Ayden's journey took a turn about two months ago when a relapse hit fast and furious. It was marrow-related and happened within the span of a week and a half.  He went from playing and jumping on a trampoline with friends to being incapable of moving his body because of bone pain.  He went on high doses of liquid morphine to carry him through until his family could get him to a hospital, only to have their worst fears confirmed.
"Relapsed neuroblastoma is more about time than about cure,"said Branndon. "It's about quality of life."
And so the Frails push on.  Branndon has avidly sought out any information on innovations in neuroblastoma treatment, regularly attending the Children's Neuroblastoma Cancer Foundation conferences to learn about new treatment therapies and clinical trials in the fight against this deadly cancer. It is at these conferences that new consortiums of doctors, like the NMTRC (Neuroblastoma and Medulloblastoma Translational Research Consortium), are outlining grass-roots treatment protocols that are groundbreaking and compassionate.
"At these conferences, doctors will grab us by the shoulders and shake us and say we are making a difference. And we are,"said Branndon.  "[There is] unprecedented hope, new pioneering medicine which, without funding of it, has no wings."
Immunotherapy is the future of neuroblastoma treatment, according to Branndon.  It is less invasive, less toxic, and less painful for the children, like Ayden, who must bear it.  "These doctors are applying novel agents to subsets of the disease.  They're not treating neuroblastoma as a singular disease.  They're treating it as a disease that has changed, morphed, become different.  It's from this experimental treatment where glimmers of hope are coming-hope that you can see your child smile again and experience a childhood essentially."
Today, Ayden is back in the hospital where he has a roadmap of Phase I and II trials that his family will pursue with "every faith of its intention,"Branndon said.
"I'd much rather have a Phase III clinical study that has an 80 percent cure rate that stands as a testament to my son as opposed to a piece of granite that told me when he was born and when he died."
Immunotherapy trials for young neuroblastoma patients generally are not funded by the federal government, the American Cancer Society, Stand Up to Cancer! or any of the other nonprofits focused on adult cancers. The hope that Branndon speaks about for his son rests with each and every one of us.  Won't you contribute a one-time or recurrent donation to CNCF today to ensure families like the Frails have treatment options as they battle relapse and fight for their child's life?  Your gifts enable us to support research by physicians dedicated to working to eradicate neuroblastoma. Your donation may also be used to help families weighed down by medical bills to attend CNCF's 13th annual Parent and Caregiver Medical Conference, to be held July 14-17 at the Westin Lombard Yorktown Center in Lombard, Illinois.

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