The resemblance was uncanny. Tammi Carr couldn’t believe how much little Tommy looked like her Chad. The same blonde hair and beautiful face that made you instantly fall in love.
The connection she felt to Tommy Ruddy from looking at a photo grew to include his mom, Amanda, after they spoke over the phone. They exchanged calls and text messages during Tommy’s short battle with Diffuse Intrinsic Pontine Glioma (DIPG), developing a bond over something neither of them could have ever imagined they’d experience.
“I was given her phone number because she didn’t want to impose,” said Amanda. “She said, ‘If she wants to call me she can absolutely call me.’
“So I did, and we just talked about the reality of this disease and what Chad went through and what clinical trials they did. She really just was there more for support from mom-to-mom. She knew exactly what I was going through.
“She gave us Chad’s wheelchair, which was amazing. It was a godsend. Jason and Lloyd came to Tommy’s funeral, which was so hard, I’m sure, but so appreciated. And I was glad to finally put a face to the family. I’d never met them before that moment.“
Thomas Anthony Ruddy was born on November 11, 2010 to Tom, Amanda, and big sister, Isabella. From an early age, it was clear Tommy was the life of their family. He was outgoing, loved sports, and had an incredible, giving spirit.
“Tommy was so different from other kids his age,” said Amanda. “He was always concentrated on others even during his illness. When kids would come to visit him in the hospital, he would take them to his toy cabinet and no child left empty-handed. Every Tuesday for radiation, he would go to the gift shop and buy toys for his friends and his sister.
“And he was the first child in his class last year to shave his head in front of the school for two friends who had Alopecia (a condition in which the child loses all hair on the body).”
For Amanda, learning Tommy had DIPG happened over time. Formerly an ER nurse, she started noticing small things that just weren’t right.
Tommy already had a lisp, but Amanda noticed it was more pronounced while he was reading a book. Later that night, the family was sitting down eating dinner and she saw him stare off to the right for a solid 10 seconds.
“I looked at my husband and I said, ‘Oh my God, Tom, I think he has a brain tumor,’” recalls Amanda. “He said, ‘Amanda, you’re crazy.’ He talked me down, like he always does, since — as an ER nurse — I always think the worst.”
The DIPG Diagnosis
More red flags popped up over the next three weeks. Tommy choked on a Teddy Graham. He suddenly wanted to take extended naps in the summer. He also started drooling.
Amanda wrote everything down, chalked it up to circumstance (lots of activity, molars coming in) and life went on.
It wasn’t until Tommy was visiting grandparents in Pennsylvania that everything came to a head. Tom had spoken to Tommy over the phone and immediately called Amanda after hanging up.
“I was at a medical conference in Chicago,” said Amanda, now a clinical research nurse. “On the morning of Thursday, August 12th, Tom called me really early. He said, ‘I don’t know, I just feel like you should call him. He doesn’t seem right, he’s not answering my questions, he just seems off to me.’
“So I FaceTimed him and almost immediately I could see a facial droop. I knew something was wrong at that point.”
Amanda’s mom took Tommy to the emergency room while she and her husband worked to get to Philadelphia to be with their son. Amanda traveled from Chicago while Tom traveled from the family home in Grand Rapids.
“I had to get a flight out of Chicago and my husband drove,” Amanda recalls. “So about 12 hours later, we were all together in Philadelphia.
“The initial CAT scan said he had a mass in his mid-brain. We proceeded with a biopsy because they weren’t exactly sure what this mass was. Even with MRI, they said it was atypical findings.
“Then the biopsy took about four, five days to come back. It was quite a long time. And they sat us down and told us he had DIPG.”
A Whirlwind Experience
Most children receive initial radiation and have months before the disease comes back with a vengeance. Typically, the family has 9-12 months before having to say goodbye to their child. DIPG moved much faster with Tommy.
“We went to radiation daily here in Helen DeVos, came home, and went to our Make-A-Wish trip as Tammi told me to do,” said Amanda. “I thought we were going to wait until he got better, but she said, ‘No, you need to go now.’
“So we went, and the week after we got home, he started to decline.”
Tommy needed a shunt placed, which didn’t go well. What should have been a 20-minute procedure ended up being five-and-a-half hours. He kept coding after the surgery, losing respiration and oxygen.
“His lungs never really recovered,” said Amanda. “We found out we could go home, which we did, because he was just getting completely depressed in the hospital and not himself.
“We had a discussion with our oncologist and we decided to bring him home on hospice, but we did it with the idea we were going to still fight. We weren’t giving up, we were coming home to make him stronger and let him tell us which way to go with this next.
“We were still waiting to get him into a trial – that was the only hope at this point – but five days later he passed away.”
A ChadTough Team
Tommy’s fight was just 11 weeks. Within two weeks of diagnosis, he could no longer talk or walk.
“This disease is just absolutely heart wrenching and it’s torture,” said Amanda. “You sit and watch your child have their abilities and capabilities taken away one by one.
“It’s just awful and so unfair and I just hope to God that one day it can be different.”
About a month after Tommy passed away, Amanda and Tammi met for the first time. The two families had lunch in Lansing, where Amanda expressed a desire to have a bigger role with ChadTough.
“We just talked about us teaming up in whatever way we could and what that would look like,” said Amanda, who called for donations to The ChadTough Foundation at Tommy’s funeral.
“Tammi and I probably talk every other day – usually via text – but it’s really comforting to have someone who knows exactly how it feels to go through this.”
Considering the similarities between the boys, the proximity of the two families, and the bond between Tammi and Amanda, the Ruddys have taken on a role within The ChadTough Foundation.
Amanda has uncovered another passion within this fight, though, for reaching out to other families who have been diagnosed with DIPG. Unfortunately, for this so-called “rare” disease, those diagnoses have hit incredibly close to home.
Both Amanda and Tammi recognize the injustice of there being no viable treatment or cure for DIPG and are passionate to make a change.
“I just feel like we are very similar,” said Amanda. “Not only do we have a very similar story, but we have a similar compassion, drive, and spirit for life. We both want to build our kids’ legacies.
“I certainly don’t have the network the Carrs have, but I will do my part.”
To learn more about Tommy and the Ruddy family, visit Team Tommy Army Strong on Facebook.
What You Can Do
When it comes to DIPG, there are so many things you can do to make a difference. Remember, every cure started somewhere!
- Vote for Coach Beilein in the Infiniti Coaches Charity Challenge to win $100,000 for DIPG research. All winnings are going directly to Michigan Medicine’s accelerated pediatric brain tumor initiative.
- Share this and other stories about DIPG to raise awareness around the need for research and funding. Dollars flow toward the loudest voices.
- Donate to The ChadTough Foundation, which is focused 100-percent toward DIPG and pediatric brain tumor research.
- Become a ChadTough Champion or a volunteer!
As always, thank you for being ChadTough!