enCouraging Childhood Cancer Awareness

As a parent, the happiest day of your life is the day your child is born. enCourage mom Karon had double the happiness that day, as she and her husband Lennie were blessed with twin baby boys, Elijah and Nathaniel. The couple relished in the joy of their sons as they settled into a life with their two new additions.

Imagine having two perfectly healthy twin boys. Now imagine finding out, at age 4, that one of them has cancer.

Elijah and Nathaniel at our NYC Holiday Party

After being rushed to the hospital with extreme leg and knee pain, doctors said that Elijah had a possible bruised bone. He was sent home with a knee brace and some pain medication after his x-rays and blood tests came back normal. But over the next four months Elijah had both good and bad days, some including stomach pain and vomiting.

“He was not looking good – not himself – but nothing was showing up in his blood or x-rays,” Karon shared. “As his mother, I knew something was wrong because the symptoms were becoming familiar. I would look at my son on the couch and see my baby brother who had passed away from Leukemia.”

It took months for doctors to realize the abnormality in Elijah’s health. After another episode of extreme leg pain, x-rays showed an irregular fractured femur bone. From here, an MRI was ordered and the family was admitted to Winthrop University Hospital for the beginning of a journey that no child, or family, should ever have to endure. It is unclear if the worse part of this is knowing or not knowing what is happening with your child. Many parents would argue that it is the not knowing that would scare them the most. For this reason, it is suggested that your children have regular check-ups with a pediatrician similar to North Raleigh Pediatrics (northraleighpediatrics.com/contact-us/) or your neighborhood pediatrician so you have the ability to react to any sudden changes in their health. The quicker you react to any ailments that appear the more you’ll have the ability to understand what is happening and put your mind to rest or move on to the next step if needed. As the old adage states, the more you know, and knowing is half the battle.

It’s rare to see this family of four without smiles on their faces

“Elijah was stuck with needles, x-rays, MRI’S, bone aspirations – the list goes on. Our beautiful little boy screamed and cried through all the painful procedures and from constantly being poked and prodded,” Karon reflects. “He begged me, ‘Mommy why are you letting them do this? Mommy please tell them to leave me alone.’ Beyond heartbroken doesn’t even touch how I felt.”

It was then that all of Elijah’s test results came back abnormal, which led to the need for a bone biopsy. This surgery left Elijah in a hard cast from his little chest all the way down his right leg and just up to his left knee. When the results of the biopsy came in, it became clear to doctors that Elijah had Acute Lymphoblastic Leukemia, or ALL, a cancer that starts from the early version of white blood cells in the bone marrow.

“All I remember is my husband shaking me and trying to get me off the floor. I had apparently slid down the wall to my knees after I had heard the words ‘Elijah has cancer.’ The oncologist explained as much as he could and told us that Elijah was to have a spinal tap procedure that afternoon and his first chemotherapy treatment,” Karon explained. My other son took it remarkably well and set about looking for ways to cheer Elijah up. He went on HelpThemFight.com which offers inspiration for those who’d like to buy a gift for someone who has been diagnosed with cancer but who isn’t sure what would be the best way to go about it. It can be so difficult, especially for children, to know how to handle such huge news, so I was so proud of his proactive response.

Elijah running drills at our 92nd Street Y basketball workshop

Fast forward to 2016, Elijah is 13 years old and currently living cancer-free. An honor roll student, Elijah loves animals, the planet, science and social studies, bugs, drawing and reading. He loves to swim, play tennis, and go to sports games. Get him on a track and all you will see is dust. The little boy who didn’t know if he would walk again, lose his leg, or even beat cancer is running laps around track stars.

But getting where he is today was no easy feat. Since his diagnosis, Elijah and his family have endured numerous blood draws, spinal taps, steroids, blood transfusions, platelet transfusion, IV antibiotics, and long hospital stays. No matter which family member it is who has received the diagnosis, or whichever type of cancer they have, whether it’s ALL like Elijah, Acute Myeloid Leukemia (AML), or Chronic Lymphocytic Leukemia (CLL) the journey you go on as a relative, and particularly as a parent is traumatic.

“Some hospital visits were so scary and he was so ill that we didn’t know if we would be coming home with our beautiful boy,” Karon said. “But against all odds 3 years and a few months after his diagnosis we were given the best news we had heard in years – NED: No Evidence of Disease. Yes, our journey has been traumatic and the fear and worry never goes away, but we look at our beautiful, brave, kind, loving, bright warrior and we are so thankful.”

Every day, 43 children are diagnosed with cancer – that’s 15,780 children per year. September is Childhood Cancer Awareness Month and it is so important not only this month, but every month, to spread awareness about the 16 major types of pediatric cancers (and over 100 subtypes) that affect the lives of children and families around the globe.

Jordan and WNY Region Program Coordinator Elizabeth at a Wegmans cooking class

Similar to Elijah, enCourage kid Jordan was diagnosed with a cancerous brain tumor at a young age. “Getting a cancer diagnosis puts you in a club that no one wants to be part of,” said mom Tammy. “We spent so much time in the hospital. In fact, we spent approximately 176 days straight in the hospital; much of that was in the ICU. At that time, almost 14 years ago now, there was so little along the lines of support.”

Tammy explained that when families are given a cancer diagnosis, there’s a tremendous amount of support around them at the beginning. But as the weeks and months pass, others continue on with their lives while diagnosed children and their families are constantly fighting an ongoing battle.

“You find your family more in isolation because others do not understand what it’s like to have so many hospital stays, doctor and therapy appointments,” Tammy explained. “Some think that once treatment is over you are miraculously cured and you go on with life. Unfortunately you are left to deal with so many late term effects from your surgery and treatment.”

Jordan stands tall at Shine Gold with other childhood cancer patients

Jordan, an enCourage kid in the Buffalo region, has been attending our Escapes for more than seven years. Her favorite events are Wegmans cooking classes, Darien Lake Amusement Park, and Breakfast with Santa at the Buffalo Zoo.

“Being a part of enCourage Kids has allowed us to meet other families going through similar circumstances. We have made new friendships, learned new things, shared family time and had opportunities we might never have had. Being a part of an organization such as this is our silver lining,” Tammy shared.

On August 29th, enCourage families in the Western New York area, including Jordan and her mom, attended “Shine Gold” – an event where pediatric cancer patients, families, friends, and the community to spread the word about National Childhood Cancer Awareness Month. The event included a DJ, mini golf, table games, food trucks and more and was a chance for cancer families and the community to come together for the same cause.

“As a cancer family, enCourage Kids gives us hope and encouragement to continue what is a very challenging life,” Tammy expressed. “Sharing family time and having fun ultimately helps everyone’s health and well-being and we are so thankful.”