My name is Lily Webster and I’m 14 years old. My nana volunteered to take me to my pediatrician as my mom and dad were working. She had noticed that I was drinking a lot and using the bathroom more than normal. Blood work was done at my doctor’s office and I had a high AIC level. My doctor sent me to DHMC to see a pediatric diabetic doctor. I was diagnosed with Type 1 Diabetes after seeing Dr. Christiano. That’s the day my life changed forever. I learned how to give myself shots, count carbohydrates, look at nutrition labels, and found out I couldn’t eat my favorite foods anymore (mashed potatoes and Oreo’s).
I am now on an insulin pump. Having the insulin pump has helped as now I no longer need to give myself shots. I just figure out how many carbohydrates I am going to eat and the pump releases insulin to cover what I’m eating.
Lily holding a bouquet of flowers
I am proud to say that by using all the information I have learned over the past year, I have lost over 30 pounds and feel so much better than I did before I was diagnosed. – Lily, Kid HERO Crew member
When you register for this year’s CHaD HERO, you are supporting 95,000 CHaD kids like Lily. Sign up today at www.chadhero.org.
Ah, mindfulness – that concept we hear so much about, but what is it really? Or rather, how do we practice it? Most of us fall into one of two categories: (1) we feel it’s sort of a vague term and aren’t really sure ‘how’ to do it, or, (2) it feels so intimidating and all-encompassing that we don’t even know where to start. I’ve wavered between both of these over the years. Looking back, the times when my mindfulness practice has felt most useful is when I’ve broken it down into small practices. There are many ways to practice mindfulness, and it’s important to pick what works for you.
Heather is a Yoga Instructor at Mighty Yoga
The mindfulness practice that has helped me the most during the past six months has been increasing my awareness of three things: (1) the information that’s coming in, (2) the thoughts that are swirling around, and (3) the words that are coming out. It is so important to have an awareness of what we’re watching and listening to, to have a filter on the information that comes in. This is the fuel that feeds our thoughts and actions. When we eat healthy foods, our bodies feel better and we have more energy. When we don’t eat so well (like at my son’s birthday party this weekend), we don’t feel so well. There is so much going on in the world right now, huge amounts of change, of pain and suffering, and also great spots of light and love. If we let all of that in unfiltered, then we feel the effects of that – good or bad. Our minds, hearts, and bodies can be such a powerful force for good in this world, but if the majority of the information we are taking in is negative, then it takes a huge amount of strength to have more positive thoughts and actions. Like running a 5K after two pieces of cake – luckily, I don’t have experience with this one!
But how do you figure out what’s necessary and what’s not? For me, I find it most helpful to ask myself, “Is it useful?” The trick is to use this practice to become aware of what’s useful and what isn’t – and to know when I’ve crossed that line. This practice of “Is it useful,” can be applied in three dimensions – the information that we take in, the thoughts running around in our head, and the words that we say. We each have a finite amount of energy. None of us wants to waste that energy on things that aren’t serving us, but we often do (unfortunately, it’s really easy!).
Heather enjoying a yoga class
The thing I like best about the “Is it useful?” approach is that it isn’t about denial; it’s about choosing where we spend our energy. If you’re having trouble with something or someone at work, it can be extremely helpful to share this with a friend or mentor. However, if the sharing turns into a 3-hour venting session, well, maybe we’ve gone past the useful stage in the conversation.
One example that comes to mind is the COVID-19 pandemic and our family. So far, we’ve been fortunate that the effects we’ve felt from the pandemic have been limited. That doesn’t stop me from wondering what if…. What if someone in our family gets sick – one of our kids, my husband, or me? How long will we all have to stay home? Will we be able to work? Pause. Is it useful? The answer is yes, to a point. Yes, we can make plans for what we’ll do, what modifications to our schedule we’ll have to make if that does happen so we’ll be more prepared. However, when all of the ‘what if’ thoughts run around in my head, spinning me into overwhelm and paralysis for hours, that is not useful. The more we practice this awareness, the better we get a noticing when we’ve crossed the line.
If you aren’t used to paying attention to these things, it can seem overwhelming at first, and impossible to sustain. Remember, mindfulness is a practice – it’s like a muscle, the more you use it, the stronger it gets. I recommend starting with your awareness of the information that comes in. Once you start to have a handle on how shifting this can affect your mood, your day, your power, then shift to the thoughts that run around in your head, and finally to the words that you say. Be patient with yourself and what you find as you venture into this exploration. Taking notes or writing in a journal can also help reinforce what you learn. I encourage you to try this for 10 days, and take notes or write in a journal every day: what happened, what information came in, what swirled around, and what words came out. What was useful? What wasn’t? What shifts could you make?
I won’t lie – it’s not easy. However, each time I shift from a whirlwind of negativity and overwhelm into spaciousness and peace, it changes everything – my day, my relationships, my life.
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)
In June 2019, Tristan began limping and complaining of pain in his right knee, so his parents took him to the pediatrician. Tristan’s doctor decided to order an x-ray and it turned out that Tristan had what appeared to be a non-ossifying fibroma in his upper right femur, which turned out to be large and at risk for breaking the bone. Tristan’s pediatrician immediately made a referral to DHMC, and Tristan and his parents met with Dr. William McKinnon in Orthopaedics.
Dr. McKinnon immediately made Tristan’s parents feel at ease with his compassionate and caring manner, and it was very apparent he possessed an incredible knowledge of the condition Tristan was diagnosed with. Tristan quickly warmed to Dr. McKinnon, who spoke directly to Tristan and treated him with such respect and kindness. They formed a friendship over the next several meetings and learned they had a shared love for nature and science. Dr. McKinnon always had some sort of fact about nature or animals that he shared with Tristan. Knowing he would see Tristan again, Dr. McKinnon would give Tristan a fact to research, so they could talk about it the next time they met. Tristan even drew pictures for Dr. McKinnon, which he hung in his office.
Tristan at CHaD
Dr. McKinnon’s recommendation to Tristan’s parents was that Tristan have surgery to correct the problem. Surgery for any person can induce anxiety, but that anxiousness can be amplified when it is your child. Tristan’s parents had already talked about the idea of getting a second opinion if the recommendation were to be surgical intervention. Dr. McKinnon did a great job of anticipating this, and had already consulted with a colleague of his at Boston Children’s Hospital about Tristan’s case. Tristan’s parents felt Dr. McKinnon was truly valuing their son and were impressed he had the forethought to already consult with a colleague about this case. That consultation of Dr. McKinnon’s enabled Tristan’s parents to avoid undue delay in addressing their son’s health issue.
Tristan at CHaD
Tristan underwent surgery days later. It was a scary time for the whole family, and especially Tristan. However, the whole experience was made exponentially better by the care they received from DHMC, Dr. McKinnon, the entire surgical team, the nurses who cared for Tristan (Nurse Ross was Tristan’s favorite!), the occupational and physical therapists who worked with Tristan prior to discharge, and the entire CHaD crew.
Tristan enjoying some water activities
In the fall of 2019, Tristan and his mom visited David’s House and dropped off a donation of paper goods and baked goods. Tristan felt good being able to give back and help another family. Tristan has healed from his surgeries, and is a happy, healthy 7 year old! – Tristan’s mom, Emily
Join Tristan for his first year participating in the CHaD HERO! Register today at www.chadhero.org.
When our son, Finn was just a few months old, I was reading bedtime stories with our daughter (Finn’s big sister), Frankie. A thunder storm was booming outside. In many ways, the storm reflected our lives at the time – we were trying to wrap our heads around having two very young children, while also trying to understand the medical complications Finn faced associated with having Down syndrome; there was a steady storm of appointments, unknowns and learning that we were doing our best to manage.
As I closed the last book for the evening, a huge thunder clap boomed outside. Here is the exchange between Frankie (20 months) and I that followed:
Frankie: What’s that, Daddy (wide eyed)? Me: It’s just thunder, Love. It will stop soon. Frankie: I’m brave, Dad. Me: I know. Frankie: I’m not afraid of anything.
She then rolled over and promptly fell asleep with the storm crashing outside her bedroom window. Maeghan tells our kids the same thing every night before bed; you are brave, kind, smart and strong. My conversation with Frankie that night helped me understand that our kids are listening to and watching what we do, all the time. In that moment, I knew that we had to be brave examples for Finn if we ever expected him to show the courage necessary to overcome the challenges that would surely be placed before him. Ultimately, we want what every parent wants for their child; for Finn to be independent, happy and make a positive impact on the world around him.
When Mae was 10 weeks into her second pregnancy, we learned that our child would be born with Down syndrome. In that moment, we did not feel courageous at all. We were scared of the unknowns and mourned some perfect life that we had anticipated for our baby. We feared that our family, friends and community would not accept our son because of his disability and that we would be isolated as a family.
Finn and his older sister, Frankie
Turns out, we were afraid of all the wrong things. Finn is loved, welcomed and supported by his community. What we did not anticipate or adequately prepare for, were some of the medical complications connected to Down syndrome. While we were aware that in addition to intellectual and developmental disabilities, children with Down syndrome are at an increased risk for certain health issues, we also knew that every child is unique with their very own strengths and difficulties.
We quickly found out what this all meant for Finn. We have spent countless hours at CHaD for any number of conditions including Finn’s congenital heart defect, hypothyroidism, hypotonia, sleep apnea and digestive problems. This means visits with pediatric cardiology, endocrinology, and gastroenterology, to name a few. Our visits have ranged from a routine one-hour appointment to an extended stay, thanks to a lung infection when Finn was 18 months old. We know these visits will continue and Finn will have a lifelong relationship with ChaD – because of his heart defect, he will see a pediatric cardiologist for the rest of his life. While hospital visits can be challenging, we are grateful that CHaD is our hospital home base.
Before Finn, Maeghan and I had very few interactions with hospitals or the medical world outside of check-ups and garden-variety sickness. During Finn’s initial appointments, we were guarded and apprehensive; constantly bracing ourselves for bad news. But what we discovered quickly is the staff, volunteers, doctors and nurses at CHaD bring a secret ingredient to how they care for children – the ability to make families feel strong and courageous during very scary, vulnerable moments.
I have a tendency to ask LOTS of questions when I’m anxious or afraid; it usually buys me some time to work through a troubling thought. As someone who received a mediocre grade in high school anatomy and physiology, and has virtually no medical training, the answers we received were often confusing to me (Mae’s yoga background and training are a strength in this department). If we didn’t take notes, I rarely remembered what the doctors and nurses told us. But we always remembered exactly how we felt walking out of a visit to CHaD; listened to, respected and supported. We were also able to advocate for our son and felt that we were doing so in a safe place. The CHaD community always made us feel courageous in the most difficult moments.
Finn with his parents when he was our 2019 Kid HERO
Finn is now 4 years old, and is as brave, strong, kind and smart as they come. He shows us how to be courageous every day; building friendships at school, climbing to the top of any playground and engaging in therapy to develop his communication and motor skills. He is bringing us a life full of light and inspiration. We attribute his confidence and positive attitude at medical appointments to his experiences at CHaD. He arrives at every appointment with a smile on his face, pulls up his shirt for the doctors and nurses to listen to his heart and blows everyone kisses before we head home.
Finn and his dad this June
We still have our scares; Finn had heart surgery on June 25, 2020. Finn was freely giving out hugs and blowing kisses all the way into the operating room, inspiring us to find the courage to manage the weeks of his recovery. As parents, we may have to overcome challenges associated with Finn’s medical needs in the future. But we look to our son for inspiration and tap into our bravery bank because we are consistently surrounded by genuine kindness and caring that allows us to transcend the fears we may face in the future.
We know every child at CHaD has unique health challenges. We also know one thing is consistent; the staff, doctors and nurses make every child and every family feel courageous when they need it most. They understand when a family is struggling – maybe having a tough day because your child has been in the hospital for weeks and all you want for them is to be on the playground. At CHaD, they also understand that the cure for any illness lies not only in surgery and medications, but also in positive relationships and community support.
Finn and his family at the 2018 CHaD HERO
This is our fourth year running the CHaD HERO for our team, Finn 321. By participating in the CHaD HERO virtually with our family and friends, we honor the CHaD community. We will always remember how CHaD makes us feel in the face of medical challenges. Our hope is that every family’s visit to CHaD is like ours – filled with compassion, kindness and, of course, courage. — Luke, Finn’s dad
Sign up today to join Finn and his family in participating in this year’s virtual CHaD HERO at www.chadhero.org.