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Jacob’s Story

Jacob was diagnosed with a Diffuse Intrisic Pontine Glioma (brain stem tumor) on 5/19.  He fought for 10 months, but began his new journey on 3/21/10 as he earned his wings.

In April 2009 we started noticing Jacob's eye was blinking funny. We didn't think anything of it at first, and figured he was just tired.

The week of 5/11 is when the issues really started. That Tuesday Jacob started complaining of a headache and "seeing double". He was also acting spacey. I called and made an appointment with the ped for the next day, but was only able to get in with the nurse practitioner. She looked him over, and then referred us to an opthamologist.

My first thought was his medicine dose was too high for him now since he had lost five pounds since January. We tried a couple of days off the medication, but it didn't have any affect.

Monday (5/18), the school nurse called because he was having another headache and she commented that his right eye wasn't as reactive as the left. The nurse at the ped's office wanted us to just go to urgent care (I really think they assumed I was overreacting), but I felt more comfortable taking him to the ER. The ER doctor's noticed his coordination was off and that he was slurring his speech so they did a CT scan.

I started to get nervous when it was taking a while for them to come give us the results, and then my heart sank when three people walked in the room.

They found something on the CT scan....

Jacob was then admitted to the hospital. The next day they did an MRI, and several hours later we got the news that it was an inoperable brain tumor called a brain stem glioma, more specifically a Diffuse Intrinsic Pontine Glioma. This type of tumor is so rare, that there are only about 200 cases diagnosed each year.

Due to the diffuse nature of the cancer there are no surgical options, and current chemotherapies have been found to be ineffective. While radiation therapy does permit some relief of the symptoms, the benefits are short lived, and there are no known long term survivors once the tumor returns.

Jacob has been enrolled in a clinical trial at Cincinnati Children's Hospital. The trial involves radiation and the use of two chemo medications that have had sucess in adults with gliomas. Oddly enough, this clinical trial started just a week before Jacob was diagnosed.

So far Jacob has completed six weeks of radiation and four rounds of chemo.  He has entered the maintenance phase of chemo, and will receive it every two weeks for the next year.  Jacob had his Make a Wish Trip to DisneyWorld and Give Kids the World at the beginning of August, and also went to Alaska at the end of August.

Please pray that this combination of chemotherapy is what will finally beat these type of tumors.


My wonderful friend Jeannette Bredestege has set up a fund for Jacob at US Bank. If you'd like to contribute to help with the cost of Jacob's medical bills and care, just go to any US Bank and ask for the Jacob Matthew Taylor Medical Fund or you can donate through paypal: