Honored Kid Ava struggled with eczema and severe, life threatening allergies for most of her life. Then, at 5 years old, Ava was diagnosed with biphenotypic leukemia, a rare form of childhood cancer. After tough treatment and relapse, Ava passed away in January 2017, when she was 8 years old. Her mom, Esther, shares a post from 2016 that shows what it’s like to face the impossible choices that are all too typical for families dealing with childhood cancer – choices that no parent should have to make.
In a moment of joy between mother and daughter, Esther and Ava smile for the camera in front of blooming lilacs.
July 30, 2016
Because Ava’s cancer is so rare, she’s never really fit into standard protocols. Doctors have scrambled to keep her alive these past two and a half years using different regimens. They’ve even moved to newer drugs when conventional medicine failed.
And now that we are up against the wall, Mike and I have been invited into the conversation.
We are asked questions like: “What is your end goal?”
“What intensity chemos are you comfortable with?”
“Are you looking to prolong life or are you looking for a cure?”
With every question comes an answer that changes the course of treatment.
Just in time for Valentine’s Day, your favorite lovebirds are back – 2012 Ambassador Sarah and her honey Patrick. You remember how it all began, almost 10 years ago – boy meets girl, girl fights cancer with boy by her side, boy pops the question. Now read on for the happiest of happy endings.
Photos courtesy of Chelsie Darling Photography
Patrick and I tied the knot on October 29, 2016. It started like any other good day, with Starbucks and reflection.
I kept thinking, ‘I am about to marry the man who had loved me through it all — through long distances, relapse, transplant, recovery, and finishing my degree. He has never failed to love me.’
I had no fears about our marriage standing the test of time, because we had already been through so much together. Our wedding day had been more than nine years in the making – and what a day it was!
Today marks the end of an era for Joe Bartlett and Chuck Chamness as they complete their terms on our board of directors. Read 2012 Ambassador Sarah’s heartfelt letter thanking them for all the hard work they’ve dedicated to kids with cancer.
Joe Bartlett (left) and Chuck Chamness hold their goodbye gifts at their final St. Baldrick’s board meeting.
Dear Mr. Bartlett and Mr. Chamness,
I want to thank you for all you have done as members of the St. Baldrick’s Foundation’s board of directors.
2012 Ambassador Sarah’s childhood cancer journey was nothing less than difficult. But through it all, she had the constant support from her mom. Read Sarah’s sweet letter to her mom for Mother’s Day.
Sarah was diagnosed with biphenotypic leukemia in August 2003.
Where do I even begin to thank you for all you have given and done for me? To be honest, it’s a little daunting.
Last month, 2012 Ambassador Sarah told us how excited she was for her upcoming shave. We were, too — so we filmed it!
When Sarah Swaim says that she knows what kids with cancer are going through, it’s true.
That’s because the three-time shavee is also a two-time childhood cancer survivor.
It’s been over three years since 2012 Ambassador Sarah has seen herself bald. She’s breaking that streak on Saturday to be a shavee℠ for the third time. As a childhood cancer survivor, Sarah writes about what bravery looks like to her and what makes shaving so special this time.
Sarah (left) smiles with Honored Kid Abby at Camp Fantastic in 2015.
I’m often asked if I’m nervous about my upcoming shave.
I can honestly say I’m not at all. After all, this will be my third time shaving my head for the St. Baldrick’s Foundation!
The usual response I get is, “You’re so brave.” But I don’t see myself as the brave one.
2012 Ambassador Sarah and her fiancé, Patrick, have been through a lot in their seven years together. Read how they conquered Sarah’s childhood cancer together and the love that endured through it all.
Sarah and Patrick smile with their dog, Oswald.
“It was like our eyes locked and the world sort of shifted.”
That’s how Sarah recalls the day she met her fiancé, Patrick, 10 years ago.
Dr. Choi, a St. Baldrick’s Scholar, completed a phase II clinical trial testing a new drug to help kids with leukemia and other childhood cancers, and the results are encouraging. Help fund research like Dr. Choi’s. Get involved.
Kids with leukemia, like 2011 Ambassador Julia, sometimes have to undergo a stem cell transplant as part of their childhood cancer treatment. Graft-versus-host disease is a common complication of transplants.
For some kids with cancer, a stem cell transplant is their only hope for a cure. But stem cell transplants are very risky procedures. About half of all transplant patients will experience acute graft-versus-host disease, or GVHD, an often fatal complication where the transplanted immune cells attack the patient’s body.
When 2012 Ambassador Sarah’s leukemia relapsed in 2010, she had to put her life on hold. She left college, underwent a stem cell transplant, and participated in a St. Baldrick’s-funded clinical trial that ultimately saved her life. Now in remission, she graduated college and is looking forward to starting her new job. Help find a cure for all kids with cancer — get involved.I picked up my cap and gown two months before graduation and promptly tossed it in my closet. Even then I remember being so consumed with what was going on with school that I could not even imagine or anticipate graduation.
It wasn’t until the week before, when I dug it out of my closet to iron it, that I realized the finish line I was about to cross. For that week, I got to see my cap and gown every day and reflect on everything that has happened, everything I’ve overcome, and everything that lay ahead.
Sarah gives hope and thanks after fighting cancer for the second time. You can give hope to kids with cancer, too. Fund ResearchSarah was diagnosed with biphenotypic leukemia — a rare combination of both acute lymphoblastic leukemia and acute myeloid leukemia — at the age of 14, enduring 20 months of chemotherapy. In 2008, she celebrated five years in remission.
Then a checkup in June 2010 revealed that the leukemia had returned. Sarah’s only hope for a cure was a stem cell transplant.
“There’s no easy way to say what it’s like being a young adult with cancer … it’s harder than you can imagine,” Sarah says. “The physical and emotional tolls were just awful and for the longest time, I couldn’t remember feeling well. I had a lot of pain, nausea, and was so weak I couldn’t do even the simplest of things.”
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