Finishing one marathon. Training for another.

Alexa’s first marathon started when she was just three years old and she was diagnosed with a rare and deadly cancer. But with years of aggressive treatment and annual checkups until age 18, Alexa, now age 24, is cancer free and recently took part in the Boston Marathon.

Alexa photo 9-2013_nAlexa’s mom, Kerry, tells the story: “Our family just finished celebrating 21 years since Alexa’s diagnosis, but I remember that time as if it were yesterday. When Alexa was three years old she began having trouble sleeping because of a pain in her side, although there was no bruise or other problem we could see. When the pain continued, we took Alexa to her pediatrician, but he couldn’t find anything either.

“Alexa’s pain didn’t go away, though,” Kerry continued, “and seemed to be increasing, so the doctor told us to take her in for an X-ray first thing in the morning. After the X-ray, we learned there was a spot on Alexa’s lung, and an appointment had been scheduled later that day at another hospital. As we got our things together, I casually mentioned to the ER staff that we were going to stop at McDonalds on the way since Alexa hadn’t eaten all day. When we got to the counter at McDonalds, the person there asked if I was Alexa’s mom. When I said ‘yes’ they told me the hospital had called ahead to warn us not to let Alexa eat as she would need to be sedated for the next procedure.

“We needed to drive out to Manchester Hospital for the MRI, but Alexa didn’t respond well to the sedative and it looked like the MRI would have to be postponed. I just knew there was something seriously wrong though; in my bones I just knew. In the end, the staff re-worked the schedule and fit Alexa in for her MRI later that day. Then we were instructed to return to UConn Health Center. Connecticut Children’s had not yet opened, so this was the beginning of our driving all over the state to see various specialists,” Kerry explained.

“At UConn they were expecting us, so in a short time we found ourselves in a room on the cancer unit. Dr. Altman and four other doctors asked my husband and I to step into the hall where they told us our daughter had cancer. It was very serious and they were considering immediate surgery. By this time it was quite late in the day. And I had a one-year-old at home with my father.”

burrows and altmanWith a deep breath, Kerry continued, “Alexa had a neuroblastoma, located behind her heart and lungs. Typically, these cancers occur near the abdomen and are found in the first 6 months of life. We learned the tumor was quite large and advanced, as it had been growing for Alexa’s entire life. And it was pressing on her nerves (which had caused the side pain). But due to spinal cord involvement, as well as the overall complexity of the case, Dr. Altman decided to consult with colleagues before moving forward with surgery.

“Alexa went through days of tests and specialist consultations as the pain grew worse. The one thing that seemed to help was being in water. There was a huge tub at UConn so I brought in a bathing suit and spent hours playing Barbies or drawing in the tub with Alexa. Because her case was so rare (fewer than 2% of neuroblastoma grow behind the heart), Dr. Altman presented Alexa’s case to a board of specialists in Chicago. All in all, it ended up taking about 10 days to get to the first surgery. The surgery itself took about 11 hours, but we all felt optimistic that it was successful.

“Sometime later though Alexa started tripping and generally losing coordination,” Kerry recalled. “An emergency MRI revealed that her tumor had grown back. And this time the tumor was growing in her spine.”

“All this happened before Connecticut Children’s opened its doors,” Kerry explains, “so Alexa and I, and my one year old, were running all over Connecticut to see specialists, and get tests or X-rays. It was very difficult. But once Connecticut Children’s opened, Alexa’s entire team was able to easily gather for regular updates and strategy sessions. And of course, my husband and I were invited to all of these meetings. It was such a tremendous relief to have everyone in the same place and it helped us better understand what was going on.

Alexa Burrows finishing the 2016 Boston Marathon_n 4“Connecticut Children’s understands children. It sounds so simple, but makes all the difference. Their approach is much more patient and sympathetic to children. It’s an entirely different and better experience for children and their families.”

Taking time out from her marathon training, Alexa recollects, “I don’t remember any of the early stuff – the surgeries or all the testing to get a diagnosis. I continued to have appointments at Connecticut Children’s until I turned 18 though. The doctors wanted to establish that my protocol could be useful to other children with serious cancers like mine. That makes me feel really good.”

“I mostly remember Dr. Altman being gentle and kind,” Alexa recalls, “and also that the nurses were fun and caring. I remember the dinosaur examination table was my favorite and I would fuss if we had to use a different room. I know I’m incredibly lucky to be alive, let alone training for the Boston Marathon. It’s funny – even though I know I was very sick, my memories of Connecticut Children’s are mostly warm and happy.”

#CTChildrensTurns20: Melissa’s Story

By Melissa M.

Melissa was first seen at Connecticut Children’s following its grand opening in 1996. Below, she shares her courageous battle with Bacterial Meningitis, the life-saving care she received and her journey to a Masters degree in Occupational Therapy.

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I was admitted to Connecticut Children’s Medical Center a month before I turned six years old, in May of 1997. I had been suffering for months prior from severe headaches and was being treated by my primary doctor for juvenile migraines. When the symptoms became more severe including a stiff neck, vomiting and body aches, my parents took me to Connecticut Children’s. I arrived at the ER practically comatose, weighing only 35 pounds. After a series of tests I was diagnosed with Bacterial Meningitis, which had developed from undiagnosed and untreated Lyme Disease.

The staff at the Medical Center provided amazing care during my stay. Everyone was warm and caring, and they made sure not only I was comfortable, but my entire family as well. My mom says the staff made sure she was comfortable, and put my three young siblings at ease. One thing that always stood out to my mom was how the Connecticut Children’s staff put a recent picture of me on the door as a reminder of what I looked like when I was feeling well; she felt it was great for staff to see that and keep it in mind when they were treating me.

Thanks to the wonderful treatment I received at Connecticut Children’s, I was able to return home after only four days. I did go home with an IV in my arm for a month, and my family received support for managing that as well. At the end of my treatment, I was brought back in to the hospital to be evaluated for any developmental delays that could have been caused by the Meningitis. I was extremely lucky to have recovered with no lasting effects. My mother was told that my treatment was just in time, as I might not have made it if we had waited for my outpatient providers.

I am extremely grateful for the top-notch care I received at Connecticut Children’s. The staff not only cared for me and my medical needs, but my emotional needs, and the needs of my family as well. Today, I have one year left before earning my master’s degree in occupational therapy. I love that Connecticut Children’s embodies everything we care about in the OT profession; we believe in treating the whole person and Connecticut Children’s does just that.

It would be amazing if I could complete my fieldwork or even work at Connecticut Children’s Medical Center one day.

Summer Snack Series: Veggie Variations

Inspiring your little one to eat vegetables can be a challenging task and at times, may even feel impossible. Don’t you just wish they’d jump for joy when you place a bowl of peas at the dinner table!? So how can you make veggies more appealing so your kiddos not only eat them but LIKE them and maybe, just maybe…ask for seconds?

It’s always best to think of snacks as “mini’meals” which means they should always include a carbohydrate, a protein and remain around 200 calories or less. A good rule of thumb is to compile a snack with less than 15 grams of carbohydrate and less than 5 grams of fat per serving. By using veggies at snack time, you’ll be certain to get the recommended 2-3 cups of veggies in your child’s daily diet!

Below are three super quick and easy veggie snacks that not only meet those nutrition guidelines but taste great too!

Ants on a Log: A fan favorite treat that’s super simple to make and fun to eat! Fill celery sticks with 1 Tablespoon of peanut butter and top with a few raisins.

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Fun veggie bagels: Use 1 mini bagel with cream cheese and incorporate sliced raw veggies such as red or green peppers, cucumber, carrot slices, broccoli etc.–Have fun decorating bagels with veggies for an entertaining & delicious treat!

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Salsa platter: Include raw veggies of your choice and 6 whole grain crackers.  Use 2 Tablespoons of Guacamole – optional. 

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