A Little Boy's Last Christmas: How To Help A Family Cope

EAST HAVEN, CT — Six-year-old Trenton O'Brien fell ill last summer. Tragically, the Momauguin Elementary School student was found to have a very rare and inoperable tumor on his brain stem, a diffuse intrinsic pontine glioma.

A 'Hope For Trenton' GoFundMe was created in June to help ensure that Trenton's father Tim O'Brien could be "by his son's side and help him through his treatments."

On Christmas Eve, he went home and has been on hospice and "declining rapidly." The family said in a Monday update on GoFundMe that he is suffering from right-side paralysis and is on a puree diet.

An aggressive tumor that progresses very quickly, a biopsy was done and he was fitted with a pinpoint radiation mask. As was explained, the procedure had a saturated, thick fishnet-like-plastic sheet draped over Trenton’s face, while it was still wet, and bolted it to the table he laid upon. He had to lay there for 10 minutes for it to dry and mold custom to his face. A MRI was taken of his brain while the masked cured, so that a 3D map could be made. This map allows for the radiation to be focused onto specific small areas and concentrated levels. "He handled it like a champ and he’s very excited to take his custom mask home at the end of radiation, so he and his dad can customize his mask into a new superhero costume."

He then underwent a seven-days-a-week, five week radiation treatment.

In July, his father Tim appeared on local radio to spread awareness of DIPG and suggest the use of hashtags to further awareness of the disease and of Trenton's situation: #DIPGawareness #fightSIPG #TeamTrenton #Hope4Trenton

In early August, a silent auction and pasta dinner fundraiser was held. By the middle of the month, the child's radiation treatments were done and Marissa O'Brien shared that while "We’re all excited this parts over, no one more than Trenton, but radiation being over doesn’t mean he’s cancer free, unfortunately. The radiation will hopefully shrink the tumor to buy more time. They do an MRI a month from now to see if it accomplished anything because the radiation continues to work for a week or so after the last treatment.Trenton’s right eye still isn’t moving to the right, but there’s less facial paralysis and he’s able to walk a little by himself without assistance around the house, but because his eye still can’t move, we know the tumor is still very much there."

It was at once a hopeful and tragic update.

By mid September, the family learned that the "radiation had not shrunk the tumor, but seemingly slowed it’s growth."

"Please continue to send your positive thoughts, prayers and love to Trenton and his family. No one should ever have to go through this," wrote GoFundMe organizer Jess O'Brien.

It was a few months before the latest update. And when it came, it was devastating. Trenton had gone to a routine oncologist appointment and it was learned that the tumor had grown rapidly. There was little that could be done.

The update on GoFundMe is heartbreaking.

Photo: GoFundMe

"Trenton's family were lucky and happy to have had him home for one last Christmas, but his time is very limited and Trenton's family are now faced with what will be a large bill for funeral arrangements."

His father Tim "hasn’t been to work on a full time basis since June when Trenton was diagnosed, and thanks to everyone’s incredible generosity and help, it allowed for him to spend what time he had left with his son. But that lack of income has Trenton’s parents worried about how to afford proper funeral arrangements before their sweet boy becomes their guardian angel."

East Haven Public Schools announced that on Thursday, Jan. 2, 2020 faculty, staff, and students are asked to wear yellow and donate $1 or more as a show of support.

And Sunday, East Haven Mayor Joseph A. Carfora posted on Facebook that East Haven Town Hall will be joining the district wide fundraiser.

Vincent Borzillo wrote on Facebook that Trenton is a "Great young man. A Momauguin student who always has a smile. He is a warrior."

Photo: GoFundMe

To help the O'Brien's visit the GoFundMe page here.

GoFundMe is a Patch partner.