In our last update on 2013 Ambassador Avery, she was participating in a clinical trial to treat her brain tumor. Today, she’s off the trial and back home on hospice care. Here’s an update on the next chapter in Avery’s story.
2013 Ambassador Avery was diagnosed with a brain tumor in 2011.
At the end of last year, after living with a stable brain tumor for two and a half years, 13-year-old Avery was back in the fight against childhood cancer.
This is part two of an excerpt from 2015 Ambassador Chase’s mom’s new book, “Chase Away Cancer.” Read along as she gives an inside look into their family’s life during Chase’s childhood cancer treatment, and then head over to our shop to grab a copy of her book so you can read the rest. 100% of the proceeds from books bought on our shop will help us fund childhood cancer research!
Chase with his parents, Ellie and Bob. Chase was diagnosed with an atypical teratoid rhabdoid tumor (ATRT) when he was 2 years old.
Missed part 1? Read it here >
Much later, as the night-shift nurses crept into the room, giving medicine and checking on Chase, the usually familiar, comforting sounds changed.
The nurses’ movements became more urgent, and then through a sleep-induced fog, I heard the snap of a switch and light flooded the room.
If you’re like us and you fell in love with Chase as soon as you read his story, you’ll definitely want to grab a copy of his mom’s new book, “Chase Away Cancer.” Read the passage below about Chase’s second day of radiation, and then head over to the St. Baldrick’s shop to buy a copy and read the rest. 100% of your purchase through this link will help us fund lifesaving childhood cancer research.
Chase was diagnosed with an atypical teratoid rhabdoid tumor (ATRT) when he was 2. Now, he’s 6 years old and stable.
Despite medical intervention, Chase’s fever continued to rise and his heart rate wouldn’t come down. The doctors came and went, talking to us and then stepping out in the hall to phone Chase’s other doctors and make plans.
Chase himself was in fairly good spirits as he’d been given stickers and a comfortable, soft pair of yellow hospital pants, but monitors don’t lie. His heart rate was staying way too high while the fever hovered around 104.
After repeated sessions of consulting with us and stepping into the hallway to get on the phone with Dr. Lulla and Chase’s team, all the white coats concurred: Chase needed to “go home.”
Yesterday, Ambassador Phineas’ dad, Carlos, joined more than 200 childhood cancer advocates on Capitol Hill to drum up support in Washington for kids with cancer. He opened up about what it’s like to have two children diagnosed with cancer, how research saved his son’s life, and why he won’t stop telling his family’s story. Read his powerful speech below.
Carlos with his son, Phineas. Phineas was diagnosed with cancer when he was 4, six years after his sister Althea died of childhood cancer.
I live in Chapel Hill, North Carolina, but like most of my neighbors, I’m not actually from North Carolina. Chapel Hill is a college town where new people come and go every year.
Whenever my wife and I meet people for the first time, one of the first questions we get asked is, “So, how did you end up in Chapel Hill?”
When I hear that question, I always freeze for a second because I have to decide carefully how I want to answer.
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.
2013 Ambassador Emily is living it up in the Big Apple as a student at New York University. Meanwhile, her mom is on the other side of the country in California. Despite the distance, Emily made sure her mom is feeling loved for Mother’s Day — read Emily’s touching letter below.
Emily and her mom have a close relationship.
First off, happy Mother’s Day! I love you so much, which I hope you already know. I hope you can understand how difficult it is for me to write this letter because you (and Dad and Max) mean more to me than everything in the world.
2013 Ambassador Avery has been fighting a brain tumor since she was 8. Her mom, Stephanie, has been by her side every step of the way. Read what Stephanie has to say about how childhood cancer has changed her job as a mom.
Stephanie smiles with her husband and four children on a recent trip to Disneyland.
I always wanted to be a mom, and I have always taken my role as a mother to heart. But now, I’m an advocate for my kids, too.
2013 Ambassador Avery has had one wild ride during her childhood cancer experience. Read an update on how she’s keeping her “can do” attitude throughout her relapse, clinical trial, and everything in between.
While news of a brain tumor might stop some people from having a positive outlook on life, that’s not the case for 2013 Ambassador Avery.
“Some people get cancer and others don’t,” she said. “This is just what I have to deal with.”
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.
Ambassador Phineas was diagnosed with acute lymphoblastic leukemia in 2013. He’s alive today because of research funded by St. Baldrick’s. His mom, Tina, shares how their family will be spending his three-year diagnosis anniversary.
The Sandi Family (left to right): Fiona, Carlos, Phineas and Tina.
On March 28, 2013, we found out that our 4-year-old son, Phineas, had cancer. It was a terrible day — but heartbreakingly familiar.
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