Cameron’s Story – Ewing’s Sarcoma

cameron_cancerV.jpgWhen he was in sixth grade, Cameron Greenwood was fast—really fast. He could run a mile in six minutes and forty seconds. But then in seventh grade, when he expected his times to improve, he slipped back to a nine-minute mile. The usual suspects were blamed—video games, not enough practice, or too many snacks. Then Cameron began to experience severe back pain that would regularly wake him up at night. It turned out that the same culprit that robbed him of his speed would threaten to take away much more.

“Over the course of the next couple of months, I went to many doctors and had x-rays, but nothing was found. Finally, in January 2010, I was sent for an MRI and an aggressive looking tumor was found in the right iliac wing of my pelvis,” recalled Cameron, now an entering junior at Lewis S. Mills High School in Burlington.

Within a week, Cameron was sent to Michael Isakoff, MD, director of clinical trials, Hematology/Oncology at Connecticut Children’s Medical Center. Dr. Isakoff confirmed that Cameron had cancer. He was diagnosed with Ewing’s sarcoma, a rare form of bone cancer that occurs primarily in children. Cameron’s cancer had already spread to his lungs and bone marrow.

“The whole staff at Connecticut Children’s was wonderful. I was really scared, and they took the time to explain everything to me and to my family,” said Cameron. “They wanted to make sure we were comfortable and had everything we needed. At that point I had no idea just how well I would get to know these people, or how much a part of my life they would become.”

Over the next year, Cameron had surgery and 14 rounds of chemotherapy. In one surgery lasting more than 10 hours, nearly one third of Cameron’s pelvis was removed along with the tumor. Physical therapy and more chemo followed through the summer months. Cameron finished his final round of chemo in November 2010.

“But we can’t forget that Cam was lucky, too,” said Scott Greenwood, Cameron’s father. “If the tumor had spread just another half inch closer to the sacroiliac joint, too much of the pelvis would have had to be removed to give his leg a place to rest in the joint and give the support its needs to function properly. He would have lost his right leg. We are thankful the doctors could stop the tumor’s growth before it got to that.”

“Cam’s determination and spirit can’t be overstated. Before he was even done with his final round of chemo, he participated in Vie for the Kids 5k fundraiser. He’s an amazing young man,” said Danielle Greenwood, Cameron’s mother. “He was not in the best shape on the day of the race. His blood counts were down and he was white as a sheet. It took him more than two hours to finish. But all his friends and supporters stuck with him and he finished the race in style—running across the finish line. Everyone cheered. It was a moment I won’t forget.”

“I completed chemo in November 2010 and the following April was cleared to play lacrosse—I scored my first goal in May,” added Cameron. “While I will never be as fast as I was in sixth grade, and I will always walk with a limp, I’m playing on both soccer and lacrosse teams at my high school. And, I’ve been cancer free for almost three years.”

Dr. Isakoff concludes, “Cameron’s prognosis is good. But what’s outstanding is the way Cameron is living the life he wants. Despite his challenges, he still plays sports with great pride and enthusiasm. He helps other kids going through what he went through, and to see that there’s life on the other side of treatment. He’s a special young man.”

Nicole and Corine’s Story – Sickle Cell Disease 

nicole_corine_sickle_cell_disease_family_centered_rounds_retouch.jpg“We’ve been in and out of the hospital since my girls were babies,” says Evon Black, mother of Nicole and Corine who both suffer from sickle cell disease. “Nobody wants to be in the hospital or to have children in the hospital, but we feel so at home here. That makes everything a lot easier.”

Evon continues, “I like being included in morning rounds. It gives me a chance to organize our day by understanding the treatment plan for that day. If I have questions, the treatment team is always happy to explain. We’ve seen so many doctors and tried so many treatments over the years, it can be a little overwhelming sometimes. So it’s nice to start the day with a clear plan. The doctors and nurses let me know what to look for in my girls as a sign of progress or something to bring to their attention.”

“Studies have shown, and it has certainly been our experience here, that getting families more involved in their child’s treatment decisions improves communication and the overall satisfaction of the family,” says Anand Sekaran, MD, medical director of inpatient services at Connecticut Children’s. “Of course, everything we do is aimed at improving the outcomes and well-being of our patients. And we’ve found that when a family is included and understands the treatment plan — what we are doing and why we are doing it — they are more likely to stick with the plan. Parents clearly are the most knowledgeable about their children. And parents are the best advocates for their children. So we want to get them involved and keep them involved wherever possible.”

Dr. Sekaran adds, “We do understand that not all parents are comfortable participating in rounds. So we tailor our approach to fit the family. Some families wouldn’t dream of missing rounds, but others are more comfortable with a one-on-one update later in the day. All families are different, so maintaining flexibility is the best way for us to make sure everyone gets what they need.”

Family-centered care is a core belief at Connecticut Children’s. With family-centered rounds the medical center continues to keep finding new and better ways to give children the best care possible.