Hope and help for Porter DIPG diagnosis

Taylor and Danielle Guillemette received devastating news a couple of weeks ago, their 7-year-old son Porter was diagnosed with Diffuse intrinsic pontine glioma (DIPG). An aggressive brain tumor that is very difficult to treat because of its location in the brain stem. Porter spent a week at Boston Children’s hospital right after the diagnosis with his parents by his side. A biopsy was done to find the specific mutation and set a course for treatment. He has started radiation therapy immediately that will continue through the beginning of March. This will try and slow the growth of the tumor. They will soon start clinical trials in the hopes of finding a cure.

To describe a little about Porter, he is a funny, extremely smart, energetic, and polite kid who definitely takes after his parents. His good nature comes from both parents but I think mostly Danielle. Porter doesn’t get upset much, unless he drops one of his cookies on the floor and uses a little colorful language, which probably comes from Dad. Just like most kids, he wants to play, play, play. Swimming and gymnastics are second nature, and he is having fun in his new adventure of learning to ice skate. Porter excels in second grade at Acushnet Elementary and his good-natured personality always puts a smile on those around him.

Taylor is a firefighter and in our station we have a tight knit family, always talking about each other’s kids and life in general. Going to each other’s homes for birthday and holiday parties we all got to see Porter grow up. All those that work with Taylor remember when Porter was born. How happy and excited he and Danielle were to have a beautiful baby boy. Always talking and telling stories of Porter, you could see the joy in their faces and how much they love him, we all love Porter. We ask for your help in donating, this will help Taylor and Danielle cover any costs that come up for treatments, travel, unexpected costs, etc., and time off from work so they may spend as much time with Porter as possible.

This was a totally unexpected and crushing diagnosis to his family and friends and seemed to come out of nowhere. Porter unfortunately came down with COVID right before Christmas and missed a visit from Santa at a holiday party. Santa still ended up making his visit Christmas night, leaving presents for Porter. Shortly after, Porter would lose his balance or stumble his words at times among other symptoms and made Taylor and Danielle worry. They brought him to the doctor and were told he had a viral infection that was affecting him. The doctor sent them to Boston Children’s for another opinion. After a long day in Boston, doctors agreed that he had a viral infection and that it would go away on its own. They told Taylor and Danielle that if Porter did not get any better in two weeks to bring him back for more testing. Both parents worried and kept a close eye on him, the symptoms continued and at times seemed to be worse with a few new ones showing. They knew something was not right and the worry became more. Two weeks after the diagnosis of a viral infection, Taylor and Danielle brought Porter back for more testing. Thursday they received the frightening news that Porter had a brain tumor and the next morning the worst news any parent can get. Porter had DIPG.

DIPG is diagnosed in about 300 children per year in the US with the ages of 5 to 9 being the most prevalent. Because the location of the tumor is in the brain stem, which controls basic and vital body functions, treatment is very limited. Depending on several factors including age and progression of the tumor when diagnosed, average survival of patients with DIPG is tragically less than one year from diagnosis. The diagnosis to any parent and child is heartbreaking, but we remain hopeful of a cure to help Porter and anyone else who is going through the same ordeal. We all stand behind Taylor and Danielle hoping and praying for a miracle to help find a cure for Porter.

Porter G Strong!