Author: Guest Blogger

Isolation patients bond during treatment

Shannon and Zack bonded during their post-transplant isolation periods.
The two young patients bonded during their post-transplant isolation periods.

“People would say ‘I feel bad for her’…I’m the same person I ever was, but better, stronger,” says 14-year-old Shannon Curley, reflecting on the time she spent in isolation treatment at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “I wouldn’t change anything. I’ve met so many amazing people and learned some important things.”

In December 2012, Shannon, a middle school basketball star and Billerica native, was diagnosed with acute bilineal leukemia. Due to the rarity and nature of her leukemia, doctors recommended an aggressive treatment plan. After three months of treatment, Shannon received a lifesaving bone marrow transplant and was put on a recovery plan that included a year in isolation to build up her immune system.

“After she got out of the hospital, Shannon had to go into a year of outpatient isolation treatment. Her immune system had been suppressed so her body would not reject the bone marrow, and that made her susceptible to infection,” explains Shannon’s mother, Carol Curley. “Although we were at Dana-Farber regularly, we’re lucky that she could go through isolation treatment at home and that she was able to make friends on the isolation floor during her visits to Dana-Farber.”

While in confinement Shannon kept a positive attitude and even offered support to other patients.

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My scoliosis story: Unbraced…after 2 years

chloe before and afterFrustration. Exasperation. Annoyance. Those were some of the emotions that consumed me the first day I wore my brace. Frustrated that a crooked spine was interfering in my happy teenage life, frustrated that I felt restricted from my normal activities, and worst of all, frustrated that the end was nowhere in sight. There was no set duration, no calendar countdown; it seemed like an eternal waiting game.

The initial days, weeks and months with my brace brought physical pain, sleepless nights and feelings of desolation and despair. It was painful to eat, as my stomach would press against the rigid plastic when it expanded. It was agonizing to ride in the car. But like many uncomfortable things, we learn to adjust, adapt and quite honestly, deal.

A couple months after I received my brace, I attended the Passion for Fashion event sponsored by Nordstrom and NOPCO Brace—a fashion show and shopping day for patients with braces. The number of fellow brace wearers shocked me. For months I had felt like the only one. The event opened my eyes—there are actually a lot of kids on this journey.

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Two lessons I learned on my weight loss journey

Bobby_B
Bobby, before and after OWL.

I was a patient in Boston Children’s Optimal Weight for Life (OWL) program in the early 2000s. At the time, I was not aware of how much of a positive impact the program would have on me later on down the road.

When I was in the program as a young teen, I weighed about 200 pounds. After leaving the program, I went on to play football in high school and continued to gain weight. By the time I gave up football after my freshmen year of college due to injury, I weighed in at 270 pounds.

That was when I committed to my weight loss journey and began using all of the information I learned in the OWL program. I found personal success using the foundation the OWL program gave me. Today I weigh 185 pounds.

I was recently given an opportunity to visit with the OWL patients who participate in the OWL on the Water (OOTW) rowing program and talk to them about my weight loss journey. This program gives kids an opportunity to build friendships with other kids fighting the same battle and learn the importance of exercise. There are two key points any kid on a weight loss journey needs to understand.

The weight loss journey is a lifelong journey.

Kids need to realize the weight loss journey will not end once they reach their target weight. There seems to be a common trend with people losing weight and then putting it back on. What kids need to understand is that once a target weight is reached, it is even harder to maintain that weight. Just because a goal has been reached, it doesn’t mean they can stop exercising and stop watching what they eat. It is so important to make this a lifestyle and not just a phase. By making it a lifestyle, it will be possible to keep the weight off rather than regaining it.

Have a goal other than a number on the scale.

A lot of focus is put on attaining a goal weight. This can lead to a lot of frustration, because there will be ups and downs. I found it incredibly helpful to have a goal other than a number on the scale. It doesn’t matter what this goal is, whether it be a certain outfit, a certain activity or even a certain physical feature. These goals off the scale will help maintain the motivation to keep pushing down the weight loss road.

The OWL program and OOTW are helping kids realize a healthy lifestyle is possible for them. They can do anything they set their minds to as long as they fully commit to it. I look forward to the next opportunity to speak with these kids because I want them to know they aren’t alone and they can have the same weight loss success I have had.

OOTW participants enjoy a guided workout.
OOTW participants enjoy a guided workout.

This video tells the story of OWL on the Water, a partnership between the New Balance Foundation Obesity Prevention Center Boston Children’s Hospital’s Optimal Weight for Life Program and Community Rowing, Inc. (CRI). Many of these athletes develop strong supportive peer relationships and learn important life skills. They become invested in their own health, start asking important questions and begin to look at their future with new possibilities. Many more have moved on to athletic programs in their local communities such as swim team, field hockey, basketball, cheerleading, dance, Cross Fit and more.

About the blogger: Bobby Bilodeau is a 25-year-old young professional who is enjoying the benefits of living a healthy lifestyle. Bobby grew up playing sports and now likes to golf and ski in his free time. He also enjoys hiking, running and spending time with his family and friends. Bobby has a very strong desire to travel the world and explore all the incredible places it has to offer.    

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Brooke’s story: Looking back on my scoliosis surgery

Dancer with scoliosis
I was diagnosed with scoliosis in April 2009 when I was 7 years old. An x-ray confirmed my family’s worst fears: I was growing a crooked spine. I had a 30-degree curve in my thoracic (upper) spine and a 15-degree curve in my lumbar (lower) spine.

My scoliosis brace

My family and I tried many alternative treatments, such as a chiropractor and an osteopathic doctor, in the hopes that I could avoid wearing a back brace, but my curves were large and really needed bracing.

When I was wearing my brace as I was supposed to, my upper curve would go down to somewhere between 20 and 30 degrees. But I wasn’t able to adjust to the brace, physically or emotionally. I did not put in the hours wearing my brace that I should have.

Luckily, I wasn’t in any pain. But my curves were progressing. One shoulder was much higher than the other, and I was developing a large rib hump coming out of the right side of my back. You see, with scoliosis, the spine does not just curve laterally, but it actually twists and rotates, so that the ribs begin to protrude either in front or in back.

On Nov. 15, 2012, when I was 10, it was time for a follow-up appointment with Dr. Hresko. I had a feeling it wasn’t going to be good news because I hadn’t been wearing the brace.

From bracing to surgery

After my x-ray, my mother and I learned that my upper curve had progressed from 38 degrees one year prior to 67 degrees and had passed the point where bracing would be successful. Dr. Hresko informed us that I would need to have surgery and that I should not wait much longer as I had a lot of growing to do, and the curves would be harder to fix as I grew.

The room began to spin. I was crying, and my mother was crying. During the surgery, they would have to fuse a portion of my spine, so that it would not continue to grow, and place metal rods in it. I learned that I would be in the hospital for 5 to 7 days and home for 4 to 6 weeks for recuperation. This was going to be really hard as I loved school and all of my activities.

We had a lot of mixed feelings, because I did not wear my brace. But Dr. Hresko was very compassionate and reassured us that sometimes even when people wear the brace consistently, the curve is so progressive that they still end up having surgery. I was first diagnosed when I was 7 years old, and I already had a significant curve, which was not a good sign for the future.

We felt confident because we very fortunate to have the best children’s hospital in the country working with us, and my surgeon Dr. Hresko is one of their best. We were in good hands.

On January 14, 2013, I had the scoliosis surgery. The surgery lasted six hours and went very well, without complications. Dr. Hresko  corrected my curve from 68 degrees to 25 degrees. When I finally stood up a couple days later, I looked so much taller and straighter.

I would be lying if I said that it was all a picnic. Because it wasn’t. The day after the surgery, I was able to sit up in the chair for short periods of time. The next day I was able to stand and walk a little.

A physical therapist would come every day and make me walk through the hall, even though it was the last thing I felt like doing. But it was necessary to get my body working again.

Eight days after my surgery, I went home.

At home and recovering from scoliosis surgery

I had a lot of visitors. Other than that, I mostly played on my iPad, watched movies, tried to catch up on schoolwork and played
the piano. The mall became my regular place for walking to get exercise.

When we went back to Boston Children’s for my follow-up appointment, the update was good. My incision was healing well, and I was surprised what a thin line my scar was when they took off all the tape. They took a new x-ray, and everything looked okay.

brooke_h_scoli_1

I returned to school on Feb. 25 and started with a short day. My mom drove me a lot because the bus ride is bumpy. Going back to
school was difficult because I was thrown into big projects and homework right away! A tutor from my school came to my house while I was home recuperating, and she still came to the house twice a week after school to help me catch up straight through until June!

I also went to physical therapy twice a week for a month to strengthen and stretch out my upper body since my neck hurt a lot sometimes. This included going in a warm water therapy pool.

At school, I did not need to take gym (I was happy about that), could not carry any heavy books and had no recess until April (this was until all the snow was melted)! That is OK, because I went to the nurse’s office to play cards with a friend. For the first six months to a year, you need to be careful of strenuous physical activity while you are healing.

I am thankful to Dr. Hresko for who I have been able to become. He saved my life. I can still dance, play the guitar, the piano and do all the activities I want.

I got through all of this with the support of my family, friends, teachers, classmates and doctors. I hope this can be an inspiration to you. Do not be afraid. I would do it all again if I had to. If I can do it, you can do it too!

About the blogger: Brooke is 13 years old. She likes socializing with her friends, loves music and playing the guitar, enjoys dance and is a great artist, especially in the area of cartooning. She also enjoys learning foreign languages, such as Hebrew and French. Brooke has a younger brother who is almost 10 and who also has scoliosis. Dr. Hresko has cared for both Brooke and her brother since they were 7 and 6 years old, respectively.

Watch Embrace the Brace for advice on coping with scoliosis from Boston Children’s patients and caregivers.  Learn more about Boston Children’s Spinal Program.

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