Looking beyond the diagnosis for children with cancer

Brylan Wright was only four years old last September when out of the blue he had an extremely high fever accompanied with a rapid heart rate which led to the diagnosis of Acute Lymphoblastic Leukemia. He spent the initial 30 days after his diagnosis at the Children's Hospital of Philadelphia (CHOP) where he started his treatment. Today he is in outpatient care.

Brylan's mom, Keydra Wright, said that the diagnosis changed her family dramatically. She has three other children so juggling being at the hospital full-time with Brylan and being there for her other children was hard.

She said though that through it all Brylan has been wonderful. Calling her son just like every normal five year old, she said that he is a big dinosaur fan and loves to watch National Geographic documentaries and turn his room into the land of dinosaurs.

Brylan is now a patient ambassador for The Cancer Center at CHOP' 2014 Parkway Run and Walk and will be there on September 28 with a team of family and friends.

In honor of Childhood Cancer Awareness Month this September, CureSearch for Children's Cancer, Alex's Lemonade Stand and The Cancer Center At The Children's Hospital of Philadelphia are trying to raise money for research, but also to increase awareness about childhood cancer to lessen the isolation many young patients and their families feel during this difficult time. These kids want you to know that they are not their diagnosis. They are all unique individuals with passions and talents of their own.

Childhood cancer is the leading cause of death for kids under the age of 15, but still many people do not know personally a child with cancer. In an interview, Dr. Anne Reilly, Medical Director of the Cancer Center for the Children's Hospital of Philadelphia, talked about the need to support these children and their families.

"It is exhausting to have children with cancer. Even when they are not in-patient at the hospital, they spend long hours here waiting for medicine and checkups," she said.

"In the beginning, right after the diagnosis, a family will receive a flurry of support, but then regular life gets in the way and people don't understand the long ongoing stress on the family."

Raising money for further research is also an important component of these campaigns. Dr. Reilly explained that treatment is dependent on new research which takes money, and with less government assistance there is more reliance on philanthropic groups and individuals.

"The thing with childhood cancer is that if we fix it, they have their whole life ahead of them," she added.

This month The Cancer Center at The Children's Hospital of Philadelphia is running its #stillme, still awesome" social media campaign for kids with cancer to share their stories on twitter, facebook and youtube and to show that they are just like every other kid despite their diagnosis. Then on Sunday, September 28, the cancer center is holding their Four Seasons Parkway Run and Walk along the Benjamin Franklin Parkway. For Dr. Reilly the aim of the run is not just to raise money for research, but to be a fun event for people to come out and support these kids. The race starts at 7 a.m. in front of the Four Seasons Hotel who will be serving breakfast for the participants.

Alex's Lemonade Stand is celebrating the month with its "Alex's Million Mile – Run. Walk. Ride." They are asking everybody to go the distance and raise money by running one million miles by the end of the month, collectively of course. The idea is that instead of one physical location for a run or walk, people worldwide can walk, run or even bicycle daily to accumulate the miles. Even walking your kids to the school bus counts. To record your mileage, you can either use the MapMyFitness app or log them manually on the website. This is an on-going campaign so you can register to join any time during the month of September. Visit Alex's Lemonade Stand's website to see the daily progress of the campaign.

Jay Scott, father of the Alexandra "Alex" Scott, the founder of Alex's Lemonade Stand said, "people always say, 'I don't know how you have the strength to keep going on', but it is amazing the strength you get from your child who is sick and the strength from the community around you."

"Thousands of people are logging miles for our campaign. It is a crazy idea, but people are doing it and it is amazing. We are close to 40,000 miles and over $100,000 so far," he added.

Cole Patrick Fitzgerald is one of the ambassadors for Alex's Lemonade Stand. Diagnosed with Stage IV Neuroblastoma in 2007, the now 10 year old has been cancer free for over six years, but still has annual checkups at the survivor clinic at A.I. DuPont in Wilmington, Del. Describing her son on the website, Keran Fitzgerald said, "Cole has an incredible sense of humor, an infectious personality and enjoys life to the fullest. He is a green belt in karate, plays piano including composing original songs, plays baseball, loves to dance and play video games. He proves every day that his survival is nothing short of a miracle and he will never let his past cancer diagnosis determine his future."

CureSearch for Children's Cancer is also doings its part to raise awareness about childhood cancer this month. In preparation for the 2014 Philadelphia CureSearch Walk at the Philadelphia Zoo on November 1, they kicked off a social media campaign "My Cancer Hero" for kids with cancer to share their stories.

"The CureSearch Walk celebrates and honors children whose lives have been affected by childhood cancer, while raising funds for lifesaving research," said Kristen Anderson, Community Development Manager for CureSearch for Children's Cancer in an e-mail. "Funds raised go back to local area hospitals to support their clinical trial programs as well as CureSearch's own research initiatives such as 3 Grand Challenges and our Young Investigator program."

Anderson hopes that "MyCancerHero" will showcase these young fighters. "We're hoping by friends and family posting and using this hashtag, others will see how important it is that we put our efforts into research and finding a cure," she added.