Our son Charlie was born on June 2, 2003. Twelve hours after giving birth Charlie began turning blue. These episodes continued for the next few hours until our local hospital requested the Dartmouth-Hitchcock Advanced Response Team (DHART) to come airlift him to the Intensive Care Nursery (ICN) at the Children’s Hospital at Dartmouth-Hitchcock (CHaD). After arriving at the ICN, the doctors began lots of testing on Charlie to find out exactly what was going on with him. It was quickly determined that Charlie had survived an in utero stroke. We learned that the episodes that Charlie experienced shortly after birth were seizures. Our family is forever grateful for the care we received from CHaD’s ICN and the DHART crew. We credit them for saving Charlie’s life!
As a result of the in utero stroke that Charlie survived through, he has severe weakness on the left side of his body, developmental delays, as well as epilepsy. Back in June 2003 after Charlie had survived his stroke we really thought the worst was behind us, our little boy survived an in utero stroke. Little did we know the word epilepsy would become a word we would use daily in our life. Charlie fights seizures on a daily basis. Thankfully, with our CHaD pediatric neurologist and medication we are able to reduce those numbers.
Watching Charlie fight to get through every day of his life for the last 14 years has given me the passion to train for the CHaD HERO half marathon. Charlie will be with me every step of the way, as I will be pushing him 13.1 miles in an adaptive jogger. There are moments throughout training for the half marathon that I just want to give up — running has never been one of my favorite pastimes. When one of those moments occur, I think about how strong Charlie is and how he’s a Survivor. If he can survive all he has, I can easily survive a half marathon and the training that goes with it. I run for Charlie because he brings out my will to run.
Charlie’s Dad (my husband) and our daughter (Charlie’s younger sister) will be running the CHaD HERO 5K and they will be at the finish line cheering on Charlie and me as we complete the half marathon. They will be joined by Team Charlie’s Angels, made up of 15 other family and friends who all support the CHaD HERO.
My connection to the Children’s Hospital at Dartmouth-Hitchcock (CHaD) is as a parent of a cancer patient who gets treatment at the hospital. This past spring our then three year old daughter Avery, was complaining of muscle aches, back aches, and for a solid week and was running a pretty high fever. We took her in and after a few visits they weren’t really sure what was going on. After some blood work our pediatrician called us and said Avery had some very concerning numbers. I will never forget the look on my wife’s face that next moment when the Doctor told her that it looks like leukemia and we need to get to the Dartmouth-Hitchcock ER immediately. A few hours later Avery was admitted to CHaD.
The next day, the cancer team at CHaD confirmed that Avery had B-cell Acute Lymphoblastic Leukemia. Needless to say our world was turned upside down and it might be one of the darker days of my life. Things were so confusing at that moment– I had tears flowing the entire ride up to the hospital. I definitely broke NH state laws by using my cell phone to google what leukemia was, while trying to coordinate coverage for our 8 year old son back home. But when I walked into CHaD, things weren’t so dark anymore. There were still tears but I immediately felt comforted and confident that Avery was in good hands. In no time, she was set-up to all the right machines and had already had her bone marrow extracted. Things were all a blur, but I am pretty sure she had a spinal tap done as well. I was expecting to walk in and see her in pain and very scared. To our surprise, instead she was perky and laughing. She had toys, movies, stuffed animals, arts and crafts and was calling the nurses by name. Avery had everything she could ask for and every person who walked into her room made her feel so comfortable. She was not acting like she was in a hospital. It was like she was in the greatest playroom on the planet.
Things became more real for us when a team of doctors and nurses showed up to Avery’s room carrying her first dose of chemo. Child Life Specialists were on hand to help explain everything to us and comfort us. Nutritionists were there to help us with meal planning. The doctors sat with us to make sure we understood what caring for Avery would look like. In no time at all, we were armed and ready to support Avery in her journey ahead. We learned what the treatment plan was going to look like for the next two and half years. This plan would include weekly visits to the hospital, daily medications, visiting nurses, surgeries, and major limits on her exposure to other people and places. We knew this was going to be our new normal and we were going to be at CHaD a lot.
Fast forward 4 months into treatment and who knows how many visits to CHaD, Avery loves the hospital. She actually looks forward to going. She loves her nurses and gives her doctors spunky attitude. She plays in the playroom before and after treatments and she doesn’t cry anymore when she gets stuck with a needle. She takes her meds with ease. This is all very much on her for being a tough, sweet kid but it also has a lot to do with CHaD.
So we are doing the CHaD HERO for Avery and to support her battle with cancer. We are also participating because every child that goes to CHaD for care deserves the very best. We hope our small effort of raising money and participating in the HERO helps every family that has their world flipped upside down and needs the full army of support that CHaD provides. We also hope Avery’s infectious smile inspires anyone who has to go through a tough battle during their life. Maybe during the CHaD HERO or through this blog, she can be the light for someone in a dark place. She just picked out her Super Girl costume for the race and we think it’s very appropriate for who she is every day.