Kole M. - Love Quilts - 2009 Children

Biography

Our little boy, Kole, who is 4, was diagnosed with DIPG - Diffuse Intrinsic Pontine Glioma also known as brainstem glioma on October 14, 2008. 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.

Kole was taken to the Dr. October 14 because something didn't seem right and, in retrospect, this all seemed to go back to July. 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 headached 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 16. The neighbors daughter and a niece has a lazy eye.

He 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 Ped. Dr. Hill/Minter (both of these women are great) examined him. He failed his neuro exam, sent for a stat CT at McLeod- then went back to the Ped. and was taken into a room and our world was completely changed from that moment on.

Next, we went for a neurosurgeon/Naso consult who orderd a MRI for the next morning at Carolinas Hospital. And he confirmed what had been shown on the CT. We went to DUKE the next 2 days. The clinical studies were on hold and could only offer radiation. Which basically means Kole would receive the radiation have a honeymoon period for 6-9 months then the tumor would come back with a vengeance and we could expect him to survive 12-15 months. We got the call from St. Jude that he had been accepted. The Ped. had been working all morning to get him accepted. And now our story begins here October 20 at St. Jude Children's Research Hospital but at least with a ray of hope. He will begin a 6 week course of radiation plus an experimental oral chemo (Vandetanib).

It has almost been 7 months since this all started and 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 rady to finish up 4K and looks forward to starting 5K next year. Kole has a yonger 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 hime that he in enduring the fight of his life. He just looks like any normal 4 year old 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 make think we are in control of our destiney we are not. Everything we love and care about and 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.

Written by Kole's mom in May 2009