Avery, Kid HERO Crew member, throwing out the first pitch at Fenway Park for Childhood Cancer Awareness Night in 2018. September is Childhood Cancer Awareness Month.
“With lab results like this, we are concerned that this is leukemia. You need to pack a bag quickly, and get Avery up to Dartmouth-Hitchcock tonight. The doctors there know you are coming. It’ll be late once you get there, so go in through the ER.”
This is what I was told on the phone three years ago. It was evening, and a pediatrician at our local office had stayed late to wait for results from a blood draw Avery had done earlier that day. She’d had very high fevers for over a week and had been complaining of a sore back. But, other than that, she’d been acting like her normal 3-year-old self.
An hour and a half later, Avery and I pulled in to the parking lot outside the ER. She held my hand as we walked in the doors. We were greeted by a woman working at the desk – she sweetly complimented Avery’s shoes, took our information, and handed Avery a huge stuffed teddy bear. In the very first moment we were at the hospital, Avery had a smile on her face.
Avery with her stuffed teddy bear
As counterintuitive as it may seem, Avery was smiling and giggling more often than not during the six days of our inpatient stay. During that time, she was poked and prodded innumerable times, had all kinds of procedures done, and was started on chemotherapy. But, there was so much more going on than all those tests and procedures. Avery had a never-ending supply of DVDs, puzzles, crafts, books, treasure-chest prizes, and a fantastic selection of toys to play with. The nurses and Child Life team took turns being ‘attacked’ by Avery’s stuffed crocodile, which made her laugh more than anything. The staff worked together as a well oiled machine providing distractions, but also allowing Avery to talk about what might be scary, or worrisome, all while she played with them.
Avery with her mom at CHaD
Before we were discharged to go home, the Child Life team made sure that we took a trip down to the Pediatric Hematology-Oncology clinic to see the playroom there. We talked to Avery about how she’d get to play in this awesome playroom each time we came to see the doctors. You’d think the LAST thing she’d want to hear about was having to see more doctors. I braced for the impact of a tantrum or tears… but instead, her eyes were wide and dazzled by the little play kitchen, the dollhouses, and craft supplies… she was totally on board.
Avery at CHaD with Child Life Specialist Jen
During the following months, we were at clinic a lot, as demanded by Avery’s 2.5 year treatment protocol. But, that wasn’t the hardest part – the hardest part was keeping Avery away from germs that her weakened immune system couldn’t fight off. Avery wasn’t able to return to her preschool – no playdates, birthday parties, or most other things your typical preschooler does. And, for an added layer of complexity, we happen to live at a boarding school… our house is actually attached to a dorm of 35 teenage boys. You wanna talk about germs?
So, we hunkered down and did our best keep her away from those harmful germs. As such a social kid, she was really missing being a part of it all. I had expected that the worst part would be taking her up to CHaD for all her appointments. But, instead I saw that our frequent visits to clinic quickly became the highlight of her week. The nursing staff and child life team became her best buddies. We’d be at home and she’d plan out which necklace to wear to clinic because she knew Jen would like it, or it was Kami’s favorite color… Going to the hospital became like going to a play date for Avery. All her favorite people, and all her favorite toys, all in one place! So what if she was also receiving chemo infusions while playing in the playroom? (Kids are amazing, aren’t they?)
Of course, toys and playrooms are one thing – they are truly wonderful distractions – but the relationships we’ve built are what make it all work. The nurses, doctors and child life team really know and understand Avery. They knew all her little quirks, and how to keep her calm. They knew she called her PICC line her ‘tubey’, that she hates the ‘window band-aids’ that cover her port, and that she can’t stand the smell of the antiseptic sponge. They know she’s feisty and she likes to be the one in control – easier said than done in this situation – but we found a routine that worked so well, and for that I am so grateful. They certainly didn’t have to do all these things, but that’s what makes CHaD special… Everyone goes above and beyond to help kids and their families. They far exceed expectations, in all that they do.
Avery getting her blood pressure taken at CHaD
That’s just a little bit about our story – but we are well aware of the fact that we are just ONE story, ONE patient, ONE family – and that there are so many others receiving the same amazing care at CHaD. Avery received her last chemo treatment one year ago and is doing great. While we are so thankful to have gotten through treatment and put that behind us – Avery’s cancer journey isn’t over. So often the focus on cancer kids is when they’ve lost their hair and are receiving their chemo. But, there is a lifetime of follow up involved for kids who have battled cancer. We will be visiting clinic for her follow up visits. She’s still be receiving physical therapy to strengthen muscles that were weakened as a side effect of all the chemo. And there are late effects that we may not even know about yet. So, just as we are so thankful for the care she received during her treatment, we are fortunate to be able to continue her care at CHaD going forward.
Avery hanging out at a lake
What makes the CHaD HERO an incredibly special event is that the money raised goes to help the littlest patients in so many little ways that all make a tremendously HUGE difference in their lives. – Caitlin and Chris, Avery’s parents
Avery and her mom at 2017 CHaD HERO (left); Avery and friends at 2019 CHaD HERO (right)