In this interview, GuelphToday reporter Ariel Deutschmann speaks with Thomas Graham, the husband of Cindy Graham who passed away after a 20 month battle with an aggressive for of brain cancer called glioblastoma.
TG: Hello, Tom speaking.
A: Hello, Thomas, this Ariel Deutschmann from GuelphToday.
How are you doing this morning?
TG: Oh, not too bad, all things considered.
Bit of an emotional day yesterday with all the stuff coming out, but that’s to be expected.
A: Certainly, I just appreciate you taking some time to talk to me today about the memorial research fund and Cindy as well....and her decision to donate her brain and her spinal cord to help research and study the disease more for future patients.
TG: I didn’t truly appreciate it at first, the uniqueness of her donations, because it started from the initial tumour, all the way through three resection surgeries, and the final donation.
Apparently that’s unique in the world, potentially, that researchers will have the opportunity to look at how this thing progresses...I’m glad the tissue is in Sheila Singh’s hands. She is definitely a world leader in this field and is doing a lot of good work.
A: In terms of the decision to make the donation, I was wondering if you could describe what events led to that decision? I understand being a scientist, that would be one reason Cindy would want to contribute.
TG: I should go right back to the start of it, so when she was first diagnosed, there was a clinical trial being offered, and this had nothing to do with Sheila, this was a different one, the Juravinski (Juravinski Hospital) does a lot of clinical trials.
She enrolled in that it was for modified treatment, so it was standard of care and plus this other thing, but unfortunately, she was randomized into the control group. She didn’t receive the treatment, but it was more access to the doctors and more tracking.
No, she wasn’t going to benefit from it directly, but she stuck with it because she ran a clinical trial lab, briefly, so she appreciated the need to have these trials. No, she wasn’t going to get this new therapy, so her prognosis would be about the same, but she stuck with it.
During her first tumour resection, when they took out the initial tumour, Sheila was looking for participants and I believe Cindy was patient one for this, and it wasn’t necessarily a clinical trial, it was a study. Sheila has done a lot of work looking at how these things develop.
In fact, I believe she was the one to discover these tumour stem cells...which are one of the reasons why these things are so insidious, because you can’t get to these things.
So she was digging into that a little bit deeper, so Cindy donated her tissue from the first trail and just followed up with that. Every time the tumour came back, she donated more tissue to Sheila’s lab for this study, which is important.
From my understanding of these tumours the first one is one form and then it mutates. Every time it comes back, it comes back as a different cancer almost, so tracking how it develops is critical, and that’s what Sheila is trying to do.
Along the way, Sheila and her lab, and others at Mac and around the world, are also looking at immunotherapies. Cindy donated some of her blood which contained immune cells, CAR-T cells they call them, but if they can train these CAR-T cells to recognize a tumour, then your body can actually attack it.
By the end, Cindy wasn’t able to speak or walk, I mean it stole all her faculties. She still had looks in her eyes, she could communicate through looks and sometimes blinks, two blinks ‘yes,’ one blink ‘no.’ Clearly it was far too late for her, but she wanted to contribute as much as she could.
In her last appointment at Juravinski with Dr. Fred Lam and the team there, and this wonderful nurse named Diane, a real inspiration too. They collected those blood samples for the immunotherapy work, and I pulled Fred aside and asked, ‘Is there any use if Cindy was able to donate the rest of her tissue?’ and he was sort of taken aback because I guess this is rare that people offer this.
From there it went, and this is dead of COVID, there was a Herculean effort to open the anatomy lab. There’s a big team working behind the scenes to get things opened up for Cindy, that’s how big this donation was and inspiring by all accounts. In fact, I just got an email from Fred today, he was waffling between being a surgeon or sticking with the research. He says Cindy has pushed him to stay with the research.
A: It seems like her donation has really made an impact for researchers.
TG: They never had a donation like this is my understanding. When we offered we thought, ‘Oh this will be one of many,’ but that’s when it started to come to light, that what she is offering is unique. That’s why it has caught people’s attention.
I got an email yesterday from a complete stranger who read the story and said her fiancee was diagnosed with a spinal cord tumours and thanked Cindy up and down for trying to help make a difference. I think it’s impactful.
A: And how does that make you feel knowing that Cindy’s donation is helping other families going through a very scary and uncertain time in their lives?
TG: Oh, absolutely. I did a lot of reading, scientifically, I read journal articles and looked for clinical trials and treatments, and at the start of every one of those journals is ‘This is largely still a terminal disease that offers little hope.’ That’s the standard intro to all these journal articles, and that, ‘advancements need to be made,’ and then it would talk about the research they’re doing in trying to figure this out.
Once Sheila gets through everything, it’ll be made to the world. Sheila will publish everything she can gleam out of Cindy’s samples, and researchers will be able to build on that. They have ten cell lines from the tumour that can be used forever. They’ll just keep cultivating these things for people to continue studying it. The impact can’t be overstated, which is, it provides meaning. You always look for meaning in these personal tragedies.
A: I was curious if having the research memorial fund, and researchers using what Cindy has donated, if that provides any comfort for you?
TG: Oh, absolutely. If we can avoid having somebody feel like how we feel. We win.
We went through it. You see the stats and watch these people, piece by piece, have these things taken away from them and they go from these vibrant, wonderful people, it’s just a devastating thing. So, if Cindy’s contributions help others not have to feel the way we feel, then that’s it. We win.
That’s why we’re raising the money. I’ve committed as much as I can to it, which isn’t actually in the GoFundMe. I’ve been contributing to it separately behind the scenes. So Sheila has all of Cindy’s tissue and there’s all this potential, but this is the real world, and that potential needs funding to drive it. If I can raise money to maximize the good that Cindy’s samples can do, then I will do that here forward.
A: Yeah, I've seen that it's (the GoFundMe page) already collected over $5,000 so far.
TG: The original page on the McMaster site, which we immediately set up, isn’t searchable, which is why I set up the GoFundMe page. If you type it, it never comes up, but that one already has $43,000 and I’ve already committed… Well, let’s just say I won’t be getting a new vehicle anytime soon (LAUGH) but no, I have no issue with that. It’s for her legacy, but like I said, it’s maximizing these donations and helping students studying it.
The fund itself I’ve set up as an endowment, so it’s not just a big pot of money people allocate to research and then it’s gone. It’s this big pot of money, and Mac will administer it, but every year they will take a certain percentage, the return on investment, and apply that to things like scholarships, attracting the best and brightest grad students to work on this. We’re also looking at using some of the funds as seed grants.
It takes a lot of money to do these big studies and trials. Sometimes, it’s just having 20, 30, 40, 50,000 dollars to start, and you can leverage all that money to get more, or it could be a grad student’s first grant. They can apply for a grant to research a problem that maybe they couldn’t get full funding to do elsewhere to do, but it’s a really good idea that wouldn’t be explored otherwise, so that’s the hope.
That would be done in conjunction with the team at Mac and outside advisors that know about this stuff...this little bit of money getting them going, maybe start their research career, maybe lead to new ideas and new treatments. That’s the hope, I just want to bring some hope back.
This particular cancer, well, there are some more treatable than others, but this one steals hope, and it stole it from us many times. I did all I could. I researched and I found clinical trials. I even got her into a couple, but the cancer came back too quickly and disqualified her.
That was all I could do, but I can keep doing this and hopefully help others. I’m not a medical doctor, but I understand how research works, so I’m hoping to push that and someday help us get there.
A: For your sons, Dean and Darwin...I believe the U of G article said they were eight years old?
TG: Yeah, yeah they were six when she was diagnosed. Well, they remember mommy and there’s lots of videos and pictures, but in the last two years of their short lives, it’s been mommy battling this, ultimately losing battle. They watched her deteriorate and they'll carry that with them, and who knows, between the scholarship and stuff, inspire them to do something. They’re already talking about doing the mommy fundraiser at school, but I haven’t told the school that yet (CHUCKLE)
A: How do they see this whole situation?
TG: They’re so resilient. They weathered it. You can't hide anything, they watched her deteriorate. They watched her go from walking, to having a cane, to having a wheelchair, to watching her not being able to get out of bed unless I picked her up and carried her, and they helped, as much as they could. I mean we talked about it a lot, they seem pretty good, but they lost their mom.
But, they do ask, and we discussed the scholarship and what her donation is what it meant. I think I’ve been quoted in a couple things saying, They did say, ‘So Mommy is a hero then?’ and I said, ‘Absolutely, she sure is.’ So they can carry that with them too.
A: Yeah, your family kind of sounds like heroes for a lot of other families.
TG: Cindy was the hero here, we’re just trying to live up to her (CHUCKLE)
