May 30, 2018

It is hard not to smile when you meet Addison

Her sunny disposition lights up the whole room. She’s so happy, it is easy to forget her room is on the children’s oncology floor. Addison is a two year old with acute myeloid leukemia (AML), a fast-growing form of cancer of the blood and bone marrow.

Born with Down Syndrome, Addison’s mom, Kristy, always knew that a leukemia diagnosis was possible.

There is a high correlation between children with Down Syndrome and leukemia, explained Burton Appel, M.D., pediatric oncologist and Addison’s physician.

Dr. Appel met Addison on her first day of life. At that time, Addison’s parents elected to place her in a clinical trial to monitor her blood counts so that physicians and researchers can better understand the reason for this correlation.

In June 2017, Kristy and her husband Frank’s worst fears were realized, Addison had developed cancer.

Dr. Appel once again came to them with a clinical trial opportunity. Except this time, the trial would not only be for research but could have therapeutic implications for Addison. Children with Down Syndrome historically do well on chemotherapy, but may have significant side effects, including long term effects on the heart. The study would investigate ways to decrease the standard doses of chemotherapy in children with Down Syndrome. The study is being run through the Children’s Oncology Group (COG), the nation’s leading organization that partners with pediatric cancer researchers. The Children’s Cancer Institute is a strategic research partner of COG.

Addison was placed on a new regimen of chemotherapy drugs designed to lessen both the short-term and long-term side effects. This protocol, a type of “Response Based Therapy,” helps doctors to provide more individualized treatment for children with cancer, like Addison.

“We are very grateful to patients such as Addison and their families for being committed to help us learn and help kids in the future,” said Dr. Appel.

As patients with AML are incredibly prone to infection, Addison’s diagnosis requires her to stay in the hospital for a month at a time. “It’s not easy,” said Kristy. “The hospital stays can be long and tiring not only for the child but for the entire family. There are days where I feel like I want to run away and days where all I do is cry.”

Despite her challenging diagnosis, Kristy is in awe of her little fighter. “Addison is just an amazing ray of sunshine. She really is an inspiration to anyone she meets. She loves to wave and blow kisses as we walk the halls. She can put anyone in a good mood by just smiling and waving. When I feel like I can’t handle things anymore, all I need to do is look at her smiling face and know if she can smile through it all then so can I.”

 

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