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Diagnosed with a brain tumor and losing his eyesight, help Hope Rises get Thomas Jay to Disney

Reading this story below can be a punch to the gut, especially for those who have been personally touched by cancer (who hasn’t?), but it’s also important to find the HOPE in every situation. 

Read more from mother, Amy Velez, in regards to her precious teenage son, Thomas Jay.

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Find out and YOU can help us bring him a wish come true! 

To support the Go Fund Me, created by Hope Rises, to get Thomas and his family to Walt Disney World, please click here. 

Thomas Jay’s story:

“Thomas has always been surprising me from the *moment* I found out his little life was sparked inside of my belly 18 short years ago.

As a baby, he was a little love— never complaining and happy to just be wherever he was. People would be shocked how happy he always was, no matter the circumstance, how easy he was to manage as a child. And although he struggled in school and although I could see his frustration as times, he never complained about the process, the therapy, or the extra work. We could literally ask him to do anything and he’d at the very least attempt it. 

This past summer when Matthew and I would ask him to help with chores around the house, Thomas started mentioning he ‘couldn’t see it,’ to which we’d respond with disbelief. Of course he could see it. What the heck!?

So we persisted in giving him chores, household tasks, etc. and every time he’d respond the same with increasing irritation. I vented to friends about it and they all said that perhaps Thomas was *finally* acting like a normal, disgruntled teen. So, I pushed him harder. Deep inside, I kept questioning why all of a sudden he started acting like a different kid, so I made an optometrist appointment, hoping they’d find nothing wrong. The eye doctor found nothing seemingly wrong with the health of his eyes, but couldn’t figure out why that even with correction the eye sight wasn’t improved. He prescribed glasses. They didn’t seem to help. I made an appointment with our pediatrician. She said to take him to an eye doctor and when I informed her I already had, she prescribed extensive lab work, a CT scan, and referred us to an ophthalmologist.

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We were quick to jump to action. We got the labs drawn the following day, scheduled the CT scan for the day after that. 

On September 20th, I picked up Thomas after school to bring him to his CT Scan. Thomas had just started his senior year at Amherst Central High School. He seemed tired that day, but happy to see me. In my head, I kept saying to myself over and over that all the labs and tests were eliminating things that could be wrong with him and tried hard to convince myself that he’d be fine. My heart was pounding as we pulled into the parking lot at Windsong Radiology. 

They called Thomas back, leaving Joey (my 7-year-old son) and I in the waiting room. Joey has always been my ‘prayer partner,” so I asked him to pray with me. He happily agreed, we prayed for Thomas’ health. Time ticked by so slowly. It seemed as if he was being scanned forever. I just *knew* something wasn’t right. I texted my husband. He assured me everything was just fine, this was an elimination step. But when they brought me back to see the doctor, I had no doubt that my life was about to change. 

I remember feeling Joey’s small hand in mine as they walked us through the doors to speak to the doctor…

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They brought me and the boys back to a small office. Thomas’ scans were all up on the five computer screens. My eyes rapidly searched them and they fell upon a large round item in the middle of the brain scan. My mind seemed to shift into slow-mo…

‘Mrs. Velez, Dr. Calkins is on the phone. She’d like to speak with you.’

It registered that my pediatrician had already been called….*deep breath* 

I took the phone and Dr. Calkins started to speak:

‘He has a mass. They found a mass in his brain…’

My pediatrician continued to explain that she wanted us to go immediately to Buffalo General Hospital and get a consult with Neurology. 

Thomas was then hospitalized as we started looking for answers. Initially, the prognosis was extremely grim. After MRI, X-ray, and extensive lab work, it was decided to perform surgery to biopsy and reduce the pressure being placed on his optic nerves. Two days post surgery, Thomas experienced a bleed and was brought back into surgery to repair it, and while they were in there they grabbed another section of the mass for pathology since it wasn’t promising that the first section taken would lead to diagnosis. Thomas remained in ICU for eight days due to endocrine complications. He then was released to the step down unit and was released after two full weeks in the hospital. 

Every practitioner we saw in the hospital was shocked at how poor his vision had become before we sought treatment. I tried so hard in explaining that Thomas never even mentioned it until it got so poor he couldn’t deny it anymore. They would blink their eyes in complete disbelief, as I tried to share how it’s always been Thomas’s nature to never complain about anything, which had, up until this point, been a positive attribute to his personality. But, this quality also hurt him and my mama heart broke into a million pieces knowing it.

The day before discharge, Thomas’s neurosurgeon came to speak with me. He explained how shocked he was to be telling me that Thomas’s diagnosis was indeed not as grim as originally expected, but in fact the pathologist found Thomas’s tumor cells to be highly susceptible to treatment. Thomas was diagnosed having an intracranial germinoma with infiltration to both optic nerves, which was causing his vision loss. 

After discharge, we met with the team at Roswell Park to discuss a course of treatment. It was decided that Thomas undergo four rounds of chemotherapy then radiation. Each round of chemo consists of three days of infusion, each round spaced three weeks apart. 

Although Thomas has experienced his white counts bottoming out on the chemotherapy, this has thankfully been corrected with Neulasta, and is not the reason why he has been unable to go back to school. His endocrine complications and vision loss continue to prevent him from resuming his normal routine, as well as require a 24 hour caregiver. My once independent 18-year-old can not be left alone which, as you might imagine, has been difficult for our family of six.

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For me, what has been truly remarkable through this season of our lives is Thomas’s spirit. He’s been meeting every step through this journey with kindness and sincere gratitude for every single member of the medical team and staff member caring for him. He thanks *everyone* who comes into the room, he’s befriended every single person who’s cared for him, he even notices the slightest kindness. Every needle stick, every missed blood draw, every appointment, every hair lost, every single moment- he has met it with the words, “It’s just another step, mama.”

He is *still* that get-a-long kinda guy that he was as a baby, truly happy to be wherever he is, no matter what the circumstance. 

Knowing this fact about my son, witnessing it poignantly through this trial, and searching for a way to encourage his beautiful, inspiring soul through this process, I started looking for ways to lift him up. My good friend, Colleen, started suggesting organizations and individuals who specialize in granting wishes. 

So, out of pure curiosity, I asked Thomas – what would he want if he could ask for anything in the world?

Thomas, paused only for a moment, and replied that he’d love to see his *little sister’s face* at Disney World. Nothing for himself, per se, but his joy would be seeing the ones he loves the most experience joy. My mama heart exploded, my eyes filled with tears – even through this journey, even when it’d be okay to be selfish in this moment, my boy is *still* the same boy he was as a baby; ever surprising me with the sincerity of his golden heart.

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With that response burning in my heart, I started searching for a way to grant that wish for him, only to find out that he had missed the age cutoff with the Make-A-Wish Foundation when he turned 18 this past July. 

Knowing that Thomas has experienced a TRUE miracle in his diagnosis, we continue to focus on all the blessings and good around us. Our prayers have truly been answered, one at a time, so we ask everyone to please continue to pray strong, bold, positive prayers for Thomas’s 100% healing.

No negative words, no sadness, no sympathy— please❤️

We are believing – and are in agreement – that Thomas will be whole and healed, and that he will have one heck of a powerful testimony to share when this is all over. Just as Thomas sang the words to the song, “Good, Good Father,” the day we found the mass on CT scan, he continues to sing it to this day. His faith is strong that God has a purpose in all of this and although this road has been hard and sometimes scary, that meaning can be found.

Just as I mentioned in the beginning, he’s always surprised me since the moment he was conceived. This time, I’ve been surprised by his pure resilience and peace. Even with every reason to be changed by a scary situation, he remains untainted by fear and focuses on simple daily joys to keep his spirits up. There is no doubt that his journey is an inspiration of true strength, of true faith, of a gentle giant with a heart of pure gold.”

To help us grant this beautiful wish for Thomas, please click here.

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