Make A Child Smile

Kole's Story
written by mom Lori

Kole was born a healthy boy on April 7th, 2004 and achieved all his milestones appropriately. On October 14th, 2008, at the age of 4, Kole was taken to the doctor because something didn't seem right and, in retrospect, this all seemed to go back to July 2008. He was more clumsy, but had always been a clumsy as a little boy.

We signed him up for gymnastics to help him with coordination. He had complained of a headache every once in awhile but it was always when he played hard and was right before he fell asleep. In August, my neighbor noticed that he was walking with his head tilted down and that his eyes seemed to not be right... perhaps a lazy eye. So we made an eye doctor appointment for October 16th. The neighbors daughter, and a niece, have a lazy eye.

Kole had complained of swallowing problems but was diagnosed with strep in August and it went away. The symptoms were so vague that they really didn't stand out until the eye symptoms. Our pediatricians Dr. Hill and Dr. Minter (both of these women are great) examined him. He failed his neuro exam, was sent for a stat CT at McLeod- then went back to the pediatrician and was taken into a room and our world was completely changed from that moment on. as they has seen something on the CT scan.

Next, we went for a neurosurgeon/naso consultation, who ordered an MRI for the next morning at Carolina's Hospital. He confirmed what had been shown on the CT.

Kole was diagnosed with DIPG - Diffuse Intrinsic Pontine Glioma, also known as brainstem glioma. Kole's tumor is considered diffusely spread throughout the pons of the brainstem and envelopes the basilar artery. Surgery is not possible because this tumor is spread within the brainstem and cannot be removed safely.

We went to DUKE the next 2 days. The clinical studies were on hold and could only offer radiation, which basically meant Kole would receive the radiation, then have a honeymoon period for 6-9 months and then the tumor would come back with a vengeance and we could expect him to survive 12-15 months. Thursday, on the way back from DUKE we got the call from St. Jude that he had been accepted there. The pediatrician had been working all morning to get him accepted. And then our story began one October 20th at St. Jude Children's Research Hospital, but at least with a ray of hope. Kole began a 6 week course of radiation plus an experimental oral chemo (Vandetanib).

Kole is doing really well and we feel very blessed for that. His tumor has decreased in size some. His last MRI read as stable with some decrease enhancement. Our next MRI is in June and we are praying for great MRI results!!

Kole is now playing T-ball which he is very excited about, and is getting ready to finish up 4K and looks forward to starting 5K next year. Kole has a younger sister and older sister that he loves very much. If you were to walk by Kole on the street, you would never know by looking at him that he in enduring the fight of his life. He just looks like any normal child enjoying life, and for that reason, our family feels very blessed. We just pray that it continues.

The most important lesson I have learned from this journey.... Treasure every moment of your life and taken nothing for granted and realize that even though we may think we are in control of our destiny, we are not. Everything we love and care about in life as we know, can be taken from us in a flash. So enjoy the little things that go unnoticed everyday and treat each day and person with kindness, because you never know when it may come to an end. Anyways... just some insight I have gained from this journey.

(Story and Interests were last updated May, 2009)