Porter G’s Medicine

Hi everyone. We wanted to post an update on Porter and also have a new financial need that we thought could use a separate fundraiser.

For those that don’t know, our now 8yo son Porter was diagnosed with a rare(mostly) childhood brain cancer, called DIPG (diffuse intrinsic pontine glioma) in January. It has a median survival rate of 11 months. Only 10% of kids are alive after 1 year. There is no cure and it can not be removed through surgery. There are some promising drugs and trials going on right now but those are the only option for hundreds of kids. Experimental medicines with unknown outcomes.

In July after a few months of improving health and symptoms, Porters condition worsened almost overnight. We spent a night in the ER and then 3 days inpatient at Boston Children’s Hospital. After multiple tests and a long MRI we were told Porter’s tumor had progressed significantly and he only had a few weeks to live.

With this new diagnosis, he was removed from the clinical trial he was on and we started Hospice care at home. Not wanting to just give up we started looking for something, ANYTHING, we could possibly do. Besides radiation, there are NO treatments or medications approved to treat DIPG so without being on a clinical trial, we do not have access to any drugs through traditional means.

After doing tons of research and talking to other families, we can get some medications through a third party but the cost is out of pocket. Insurance is not an option. Our fist order for 3 months worth was $12,000.

Porter is still fighting. The doctors were wrong about the timeline. His latest MRI showed that the tumor is still growing but at a slower rate than they thought. There’s a chance that these medications are slowing things down and with time and maybe higher doses, could give us a shot. If this continues we will need to order more medication. At $4,000 a month we’ll be out of money quickly. This is literally our only option currently, and we will not give up.

A gigantic thank you to everyone that has already donated or helped in any way. Your support through all of this has been incredible.

The Guillemette family