Espn’s Story

Born December 8, 2007, Espn Denis was the most loving and caring little boy who always had a smile on his face.  He enjoyed watching cartoons and playing with his best buddy and big sister, Elizabeth. Like many little boys, he loved visiting the playground, getting dirty, and chasing his dog and cat around the house. He couldn’t wait to get big enough to ride the bus to school like his sister.

Soon after turning 2, in March 2010, we noticed that Espn was having a hard time keeping his balance and would often fall after just two or three steps.  Thinking it may be an ear infection that was making him off-balance, Espn was taken to the pediatrician to be checked. We were told he was fine, and that he may just need a more supportive sneaker to help with his balance. About two days later,  Espn fell and bumped his forehead hard enough to give him a large lump, as well as bloody nose and slight consciousness .  Concerned and very worried, we took him immediately to the emergency room. After a CAT scan was performed, we were told everything looked fine so we went home. Early the next morning, a different E.R. doctor called to say that after looking at the images again, he could see something near the back of his head. We were told to go to the local children’s hospital right away for further tests.

After an MRI on March 21, we were told news that we were just never expecting to hear. Espn had a Diffused Intrinsic Pontine Glioma (DIPG), a very rare, inoperable tumor located in the brain stem. We were told that only about 150 children are diagnosed each year in the US, and that there was really nothing they could do for him that would help. Because this type of tumor wraps itself around the brain stem, surgery for removal was not an option. We were told we’d only have 6-9 more months with him and that we should just look at giving him good quality of life.

After further research on our end, we decided the best possible choice, and pretty much our only option, was to enroll Espn in a research study for DIPG at St. Jude Children’s Research Hospital. It would mean leaving home for about 3 months, leaving Espn’s sister Elizabeth to stay with family, but it was the only hope we had to try and save our little boy.  Espn was accepted into the trial, and about a week after he was diagnosed, we took the 18 hour drive to Memphis, TN.

Espn spent the next several weeks receiving radiation treatments, and two types of chemotherapy pills, Dasatinib and Vandetinib.  Espn adapted well to being away from home, and made lots of friends at the hospital. He was a champ when it came to swallowing pills, which he had to take about three times a day.  After radiation treatments were finished, an MRI showed that the tumor had shrunk about 60%. This was great news, and we were on our way back home, only having to visit the hospital every 8 weeks for an MRI.

Espn continued the chemotherapy at home and was showing great improvement. His walking was much better, and he continued to be a happy little boy at home.  In September the same year Espn and our family were awarded a Make-A-Wish trip to Disney World. Espn loved the rides, visiting the characters for autographs, and especially eating the mouse ears ice cream bars!

In the next couple of months, every MRI Espn had showed the tumor shrinking more and more and we couldn’t have been more pleased. Espn enjoyed spending time with his sister and doing all the things he always loved.

Espn continued on the trial for about 15 months, until July 2011, when an MRI showed that the tumor had begun growing again. Espn was switched to another chemotherapy called Etoposide in hopes of slowing down the tumor growth.  After about a month on the new chemo though, Espn’s symptoms began worsening. Another MRI the end of August confirmed what we already knew, the tumor was growing more. Given one last chance for some hope, Espn was accepted into another new trial at St. Jude for already progressed DIPG patients.  We had to go back to St. Jude for another extended stay. This time Espn wouldn’t be able to get any further radiation, but he was given the new chemo called Crenolanib.  It was still in the early stages of this new trial so we weren’t sure what to expect, but as always, we were hoping and praying this would be the miracle that would kill the tumor and save our boy.

After a month and a half at St. Jude, Espn was allowed to come back home.  An outgoing MRI showed that cancer cells were being killed off which left us ecstatic, but Espn’s symptoms were not showing improvement. By the time we got home, in late October, Espn was not able to walk. He gained a lot more weight from being on steroids which made him more and more uncomfortable. His speech was not as good as it was, and his eyes were beginning to turn in. He didn’t have much strength left in his arms as well. These are all symptoms from the tumor affecting the brain stem. Espn still fought with courage and never once really did we hear him complain. He still enjoyed every minute of his days, and even had a chance to go back and attend his preschool that he had started in September.  On the morning of November 20, 2011, Espn passed away in his sleep.  For 20 months he fought a courageous battle. He will always be our hero.