Terri Tomoff is an author, soccer ref, car enthusiast, quilter, wife, and mom. In this episode Terri shares enlightening and informative commentary based on her book, The Focused Fight – A Childhood Cancer Journey: From Mayhem to Miracles (link is in the Show Notes). Terri and her husband Bill, along with daughter Olivia, have been on an incredible journey with Ryan, the youngest in the family (now in his late twenties), spanning a lifetime, from Ryan’s initial cancer diagnosis at the age of two, to today. The years in between have produced an extraordinary story of grit, resilience, hope, and determination, and brimming with wisdom that each of us can apply to our own situations and challenges. The second quotation in Terri’s book captures the essence of Terri’s story, Ryan’s story, the Team Tomoff story. “Sometimes real superheroes live in the hearts of small children fighting big battles.” Listen. Then read, because you will want to know more.
SHOW NOTES
4:35 – 35th wedding anniversary
5:25 – key qualities to a strong and meaningful relationship
6:00 – team approach
6:45 – facing unexpected fears, head on, one day at a time
7:25 – discovering inner strength
7:55 – Olivia, the amazing daughter and sister
9:05 – Special Love, Inc., Tom and Sheila Baker
9:35 – BRASS Camp
11:10 – Ryan, first cancer diagnosis at two years old
11:35 – ordinary family with an extraordinary circumstance
11:50 – leukemia meets it match with Ryan’s grit
15:00 – choosing hope is choosing life
15:15 – Make-a-Wish trips
16:15 – leading through advocacy
17:05 – management is key
17:45 – gratitude for such remarkable support – it kept us going, it keeps us going
19:25 – Camp Fantastic (Special Love, Inc.)
20:15 – no one wants to join the club of parents of children with cancer
21:00 – adult skills learned as a child through trial and error
23:30 – rhythm of life, impact on traditions, a roller coaster of life
24:35 – bringing home a puppy in the midst of the challenges
25:45 – ready to go to the hospital on a moment’s notice
27:10 – selecting quotations that capture the essence of one’s thoughts and intended message
29:05 – meeting Ryan’s bone marrow donor, Scott Harris
31:05 – consider joining the bone marrow registry
32:00 – graft versus host disease can be deadly
32:40 – Sharon and Lee Johnson, the ultimate role models and friends
35:15 – manufacturing sunshine
36:00 – Ryan’s loud pants
37:05 – writing a second book (Joyride Journeys)
38:30 – naming our cars and upcoming cross-country driving trip
39:20 – post-traumatic growth and gains
40:05 – how do we channel our loss?
41:40 – advocate for yourself
David Reynolds (00:12):
What matters most in learning the challenge, the thrill, the benefits, interacting with other people or something else entirely. What is the connection between leading and learning? Does change drive learning or does learning drive change? What's more important teaching or learning? Is everyone a leader, a learner, a teacher want answers, listen in, as we address these intriguing issues through commentary and with guests who share their thinking and tell us their stories. Lead. Learn. Change.
Terri Tomoff (00:55):
It's just taken one day at a time. And even when you're going through a tough time and it doesn't have to be cancer, it doesn't have to be a trauma. It could be anything, just take it head on. And I think you can, when you do that and you face your fears even, or face what's happening to you, I think that gives you strength. It gives you inner strength and grit that you don't even know you even have in your, in your being in your soul. If you have that mindset of being a team and a team as a couple team, as a family team of doctors, team of support, team of community, I use that team approach. And I think that catapulted us where we sit, where I'm sitting here with you today.
Terri Tomoff (01:36):
I have to go back to 25 years ago when he was diagnosed with his cancer at age two. But I saw some unbelievable things with that kid that I think people need to know. First of all, it's an ordinary family with an extraordinary circumstance. I will say that. But it was the kid who took this huge disease and he had a bad case of leukemia. I'm not gonna lie, but his inner core was so strong at 2, 3, 4, 10, 12, 21 that I, I, I can't even believe it is that gratitude that keeps me going. That keeps me writing. It keeps me just thanking the people. I can't thank people enough, David, really? I can't.
David Reynolds (02:22):
Today's guest on Lead. Learn. Change. is Terry Tomoff. Terry, thanks for taking your valuable time to speak with me today.
Terri Tomoff (02:29):
David, this has been an honor for me to do this. Thank you.
David Reynolds (02:33):
So Terry, before any official introduction, I have to let everybody know how instrumental you were in helping me get my first book published through a mutual friend. You graciously and generously gave of your time to not only answer quite a few questions, but you wrote out a whole bunch of it, which I came across again the other day and filed that away. And I will be using your guide when book two rolls around. So thanks for being so generous. You did not know me at all. And you just on the spot in the middle of your day, took time to do that. So that's great. We appreciate it. And I have to say about your book, although I've told you this already, your book is a tremendous read. Thank you. The focused fight. And I'll have a link in the show notes. It’s riveting. It's heart wrenching. It's humorous, it's poignant. It's inspiring. I mean, I could just keep going on, but I really do hope you write another book and if you do, I'm buying it. Oh, thank you already. One more point. Just want everybody to know that it's impossible during our one conversation to really address even a, a tiny sliver of the stories in your book. I'm not even gonna try to attempt to like create a cliff notes version for our listeners. It's just not possible. So instead I will ask you about some things that popped into my mind as I read the book and I hope that format works for you.
Terri Tomoff (03:50):
It's perfect. I really appreciate that. Yes.
David Reynolds (03:53):
On that note, I'll do a formal introduction here and then we'll get started. Terry's son. Ryan is a five time cancer survivor, five phrases like insurmountable odds, leukemia, brink of death trials and relapses fill the back cover of the book. However, so too, do words like community resilience, appreciation, support, miracles, and abundance. The way that Terry blends all of these realities together in a focused fight for life is encouraging, humbling and remarkable. Today I'm pleased to bring you the wisdom and grace of Terry TomOff, off. So first Terry happy wedding anniversary to you and Bill, if I'm not mistaken, y'all had 35 years celebrated yesterday, is that correct?
Terri Tomoff (04:37):
Yes, we did. And this is like a perfect celebration to continue the celebration 35 years and one day. And I'm here with you, David, can't be better than that.
David Reynolds (04:46):
I flipped through the pictures in the book one more time before we met today and I saw the wedding photo. It's like, Hey, that's that's yesterday. So I need to, I need to make sure I mentioned that. So I wanna use this happy occasion then as a springboard for you to share whatever thoughts you would like with the listeners about what you think are the most important qualities of a strong and meaningful relationship. Because at the core of your book, that's really what it comes back down to is relationships among your family, within those that you formed with a medical team and all this huge network of, of people and supporters. So I would love to know, what do you think are the key qualities to a strong and meaningful relationship?
Terri Tomoff (05:30):
I think one key of a strong, meaningful relationship would be respect. And you don't know what you're doing when you're 25 years old and you're getting married for the first you know, you, you have no idea what you're gonna, you could even see 35 years down the road. But one thing I think we came to discover was the respect of our relationship, the respect of our own time to whether it's work or play or together our family. It was always number one. And I think the team approach, I I've on teams my whole life. So the team Tomoff approach has benefited us for 35 years and going. So I think that would be a great summation of that whole, if you have that mindset of being a team and a team as a couple team, as a family team of doctors, team of support, team of community, I use that team approach. And I think that catapulted us where we sit, where I'm sitting here with you today,
David Reynolds (06:22):
What you just described are really solid principles for interactions based on plans and dreams, because you talked about, you know, you don't really know what you're going to do or how to do it when you're 25 and you certainly have plan and dreams today as well, but sometimes unexpected things occur, right? I mean, as you, as you well know. So what insights would you share with people who don't know how to respond to those greatest fears when they suddenly surface?
Terri Tomoff (06:48):
Well, that's a really good question, David. I wasn't really prepared for that one, but I, I think I can answer it. And it's just taken one day at a time and acknowledging that there's a tough event or thing happening in your life, the trauma don't bury your head in the sand, take it face on. At least that was my experience. I took it head on with the doctors, anyone, and even when you're going through a tough time and it doesn't have to be cancer, it doesn't have to be a trauma. It could be anything, just take it head on. And I think you can, when you do that and you face your fears even, or face what's happening to you, I think that gives you strength. It gives you inner strength and grit that you don't even know you even have in your, in your being and your soul. So I think that would be a, a good answer for that.
David Reynolds (07:36):
That really ties together the team Tomoff approach as well. And I wanna bring into the conversation, the one family member whose name's not been mentioned yet, which is Olivia, because she played a very different kind of role in this journey than, than you or Bill or, or anybody else. What are your observations about her as an amazing daughter, sister, and person?
Terri Tomoff (08:00):
I'm so glad you mentioned her earlier here on this conversation because the siblings do get pushed aside, unfortunately, especially in our case and a lot of cases that I've met so many people across the country and the world actually, that that does happen, but this girl's extraordinary our Olivia and she's 30 years old now. And she is just a highlight of our life. She just is smart and attractive and just, just has the whole package together. But I think back when she was four years old, when Ryan was first diagnosed and 10 and 12, as she followed through in his, as a older sister, trying to piece together, what she, her little brother was doing, why mom and dad weren't home. Her mom was not home for weeks on end 57 straight days. By the way, Dave was my record at Georgetown with Ryan. Well, some kids go either way.
Terri Tomoff (08:46):
She ended up having the perfect child syndrome. I put that in quotation marks because she didn't wanna have us worry about her. So she did her schoolwork. She did her soccer practice. She was a delight to be around. People wanted to babysit her or have her spend nights or weekends or whatever with her when we couldn't be available. And I think that was the key. She just had to fend for herself for a very young age. I also wanna mention our special love, the group that we belong to the cancer organization based out of Winchester, Virginia started by Tom and Sheila Baker back in 1983. It was one of the most saving graces of our lives of joining this organization back in the day. And we continued to serve and be on boards with them today. My husband's a board member. One of the camps that they have, of course there's camp fantastic for the cancer kids, but it was the brass, the brother and sisters of children with cancer, the brass camp that catapulted Olivia also to where she stands today, cuz she met her best friend who stood by her side throughout thick and thin and all the other.
Terri Tomoff (09:49):
They didn't have to say anymore anything to anyone. They knew what these kids were going to these at the camps, the counselors, most of them come back because they've been, you know, the kids and now they're counselors and the whole cycle turns over. I think that was a huge makeup of how she was able to survive everything with us, with her brother and even thrive. David, she's just, she's a businesswoman today and, and just, just thriving and we couldn't be more happy for her in what she's accomplishing. So thank you for including her so early on in the conversation, because I think they get so far behind on the conversations, almost like an afterthought, but bringing her to the forefront. Thank you for that. And she'll be appreciative too.
David Reynolds (10:30):
Well, you're welcome. And I was just following your lead. You did that masterfully in the book and it had to be really challenging to acknowledge everybody you wanted to mention in the right way and the way you pulled it off, really just nicely done. So let's wrap up the first segment so to speak by landing on some thoughts about Ryan. I'm sure you'll talk about him more during our conversation, but right now, how would you tell somebody about your son who he is and his impact on your life? If they had not read the book, they hadn't heard the conversation and says, Hey yeah, I've got a son, Ryan, and you've just told him about Olivia now, what are you gonna say about Ryan?
Terri Tomoff (11:11):
Hmm. So my son Ryan now age 27 was diagnosed when he was two. And if somebody needed to know something about him today and I do end up meeting people and how many kids and so forth, just the conversation that you led me to this, how would I describe him and so forth? I have to go back to 25 years ago when he was diagnosed with his cancer at age two. But I saw some unbelievable things with that kid that I think people need to know. First of all, it's an ordinary family with an extraordinary circumstance. I will say that initially we had loads of support and wonderful people that came into our lives because of it. But it was the kid who took this huge disease and he had a bad case of leukemia. I'm not gonna lie, but his inner core was so strong at 2, 3, 4, 10, 12 21 that I, I, I can't even believe it.
Terri Tomoff (12:05):
I don't know if it's a Polish blood because my mother would always, maybe it's I'm a hundred percent. So he's 50% Polish. I don't know if it's that Polish peasant blood that just keeps on going, going, going. The grit that he survived, David, he was on his deathbed a few times. He had that, his controller for the PlayStation, whatever he was playing and he, he could barely play a game, but he was just trying to hold on to dear life literally. And just that just how he went into himself to fight the PAC man, eating those PAC man type cells, eating up his good cells. He was bound and determined to live and to see it from a young child, it just blew me away. And my husband too, we just blew we're blown away. We don't know if we could have done it, what he did.
Terri Tomoff (12:57):
So that would be like a really good start if I had to. And I, I think I identified that in the book, but now this is we're talking through this. So to see that true grit, I know John Wayne, but true grit, really from a young kid, a three year old, you know, when, when he was two and three, those were some of the worst years he had. He had to battle through some major things. And again, when he was 10 and to see that was just off the chart and not only me, I mean the, the staff at the hospital saw it, his nurses, other kids, he had the same exact pseudomonas, bacterial infection as the girl in the next room, over one of our stays at the hospital. She didn't wake up in the next morning. She passed away. Same exact thing. This kid barreled through it, not barrel, but so how do you explain that? I don't know. Miracle, prayer. Yes. Grit by him personally for a little guy for a little guy. I, I just, yeah,
David Reynolds (14:02):
That's just a great way of focusing on something. So I, I'm not sure if you knew where you would end up with that segment, but you really focus focus in on this tenacity.
Terri Tomoff (14:10):
It was a focus, the tenacity focus
David Reynolds (14:12):
And it's the title of your book. It's the focused fight. It was not the whole way through gonna win, gonna beat this. So there's so many themes in your book and you summarize it as gratitude grit, which you've just mentioned resourcefulness and love. And as I move through the book, two core ideas continued to leap out at me. And those were hope and fight as the two, even bigger umbrella ideas as I read it as a reader. And so when I think about Ryan's mantra, I view it as subsuming all the concepts that I just mentioned, everyone that you listed and the ones I mentioned and you know, he says never give up, never give in, never, ever, ever give up. And that's what you just described to me, that stance or that approach characterizes a noble fight, perpetual hope. The steadfastness of love, the tireless resourcefulness and determine grit. So talk to us about any of those points that you would like to dwell on for a minute.
Terri Tomoff (15:09):
Well, choosing hope is choosing life. This kid chose life over anything else, no matter how are you gonna do it? And I will say there was a little carrot that kept coming up and those were Make-A-Wish trips. So in his first protocol, of course, the social workers come in. And where would you like to do? What would you like to go? Do you wanna have your basement? We don't have a basement, but you wanna have a big playground cuz he was young. No, I wanna see Mickey mouse. I wanna see Mickey mouse. I wanna go to Disney. I wanna go to Disney. So that was the carrot I think that kept him for the first protocol. Lots more. But of course I'm just gonna say that one then for the second one, he relapsed of course, 18 months later then the second one. And then we had a third one when he got back from his transplant and I think every single one went to Disney and it was the carrot that kept us going and kept him going.
Terri Tomoff (15:57):
Cause he couldn't wait to go and he couldn't wait to go to Florida. He wanted to help plan the trip. He talk he's four or five years old telling the social workers what he wants us to do in SeaTown there. So he was very articulate what he wanted. And I think that was a carrot that kept on going. And I talk a little bit about the, the book too. So I like that. I think the grit kept him moving and the hope kept him moving. I hope was a huge part of it because there was no other recourse for us. And the other thing that we can control while we were in the room would be our notes that we took. We can control that we couldn't help what was going on in his body so much, but we can control that. That also helped us with our advocacy.
Terri Tomoff (16:33):
And you were talking, you know, you learn lead leading through advocacy, doing those type of things, checking our notes, compared to what the nurses station's notes have from the previous night or the previous day, we can go over those. So leading by example and showing Ryan about advocacy and how to advocate for himself, he, he couldn't really, but we did. And we learned on the job, it was on the job training soup to nuts, everything, even to the point where, how do you, how do you manage your daily tray from food services to maximize? Because you're there for a long time. You just can't have outside food, you have to eat what's there cause you just can't afford it. We couldn't. So you just learned to manage. And we, we did that. I think management was a really good point that we had it. We had to manage our time and manage the doctors. There were so many things coming and going all all the time. It was a three ring circus. I would say
David Reynolds (17:29):
One of the other things that you've mentioned in your about the author list on the back of the book was gratitude. And I don't think we've actually mentioned that word yet today, but it's a really strong recurring theme. Talk about gratitude just a bit.
Terri Tomoff (17:45):
Oh, gratitude, blessed and gratitude more than you think. Just gratitude for all the support that I think we had over the years and you don't really realize what's happening when you're, when it's happening, the food coming in, the cards, the letters, the notes. My husband did that postcard project. When I start writing the book and started reflecting back that I see we were just flushed with all this. And then the gratitude for us is just off the charts. And we feel like we can't even give back our gratitude to what we were we received all those years. We try, we give back, we try every day. Right. But it was just a remarkable thing to see and witness and even people from the outside, looking in there was reflections in the back of the book. I, I just, you know, just, just from that, it was just such a thing that kept us going. And we're so grateful today and it keeps going, David, we're not, we're not changing anything. It's, we're grateful. Ryan's had some issues more recently and he's an adult now. So things are handled a little bit differently. I can't just blog about everything. What he, I have to make sure it's all approved by him and so forth. Mm-hmm
David Reynolds (19:11):
One of the groups that you clearly thank frequently and now through service and giving back and continue to be advocates is that camp fantastic group that you talked about.
Terri Tomoff (19:22):
And so absolutely. Yeah.
David Reynolds (19:23):
Tell us what that is. Give them a plug mm-hmm
Terri Tomoff (19:32):
Right? Camp Fantastic is a cancer camp for kids. They usually have a hundred kids and then a hundred counselors and everything else. It's all under the umbrella of special love, Inc. And that, like I said earlier was based outta Westchester. And when we went to our first camp, it was under seven weekend. So that was what we, Ryan was diagnosed in October of 96 and it was not until 97. So he was already three when we went there. So under seven and that just put the light bulb up for us that we needed to be around these folks. What that code about asking the man who's coming back kind of thing. The gala coming back from the road, they went ahead. It was that kind of thing. So we would know what to expect and we can ask questions. We made great friends.
Terri Tomoff (20:13):
We're still, I'm still friends with these folks today. All these years later, we've got that bond. Nobody wants to join that club. David, nobody wants to join that bond. But when you do have that, I think it just really helped us through so many junctures of our life. And we go to weddings, to the kids that are getting married and having babies. I mean, miracle babies for kids that had cancer, it's happening today. As I speak right now. And that is just a wonderful thing and we needed to have that. And it was early on in our Ryan's diagnosis that and Olivia, like I said, she met her best friend when she was seven. And by the way, I didn't mention, she was seven. She packed her own bag and her own suitcase. I mean, she did everything cause I wasn't around, I think did Bill did a quick daddy check?
Terri Tomoff (20:57):
I didn't do a mommy check
David Reynolds (21:47):
Full circle. But if you zoom in on it, it's like a lot of little ups and downs going around that circle because you expect ups and downs. When you start reading your book, you just do a really masterful job of laying out your reaction. Bill's reaction, the attempt to sort of control the chaos. That's just suddenly appeared and how difficult that is. And listeners are just gonna have to buy the book and read how you, how you did that. The expected up and downs were really evident in the book and, and they jumped out and you captured really well. The pendular swing and the scale of emotions with your selection of quotations. When you chose quotations to put into your book, mm-hmm
David Reynolds (22:36):
And some of the classic lines of your own creation. You've got some classics in there. You really should go back through your own book and lift all the Terry gems and just create a little flip a day calendar for people because it's great stuff. Oh, that's cute. So at one end of the spectrum might be the inclination to be too harsh on yourself. I saw some stories and some anecdotes where you might think just momentarily, maybe what's coming next is just too much. How are we gonna make it through this next valley? We could barely breathe. Once again, I think was one of the coaches she wrote in there. And then at the other end, it's it always came back to, we can do this. I think that's a, a quotation that probably showed up. You quoted these indomitable strength, indomitable will as strength. Yep. And everything in between. So looking back, has this been a, a roller coaster or more of an ebb and flow? And what was the rhythm of your life like during the years that you cover in the book? Was there a rhythm? What was this like?
Terri Tomoff (23:32):
No rhythm. As a matter of fact, I said our traditions got thrown out the window. Right. We spent every major holiday in the hospital at one point or another. So our tradition is no tradition. And what you just said, it's like
Terri Tomoff (24:21):
And I think that was really a, yeah. I, we, we, I don't know how I did it, David and I had two dogs. I would get a puppy in the middle of everything. I mean, what was I thinking? But I, I was thinking that the kid needed to have a companion to lay on the couch with, and we got this little poodle mix and that's exactly what Lucky did. He sat and he laid on Ryan's chest and I would just move his paw over just so he, you know, he had the Brok, I'd just move his paw over a little bit. Like, Hey, not there
Terri Tomoff (25:04):
What can I do to help? And if my grass is really knee high, you might wanna just go ahead and mow it. I mean, it was that stuff like that. I couldn't, I mean, somebody broke my stove. My mother says, can I get a new stove for you? I said, yeah, go ahead. Are you sure you don't wanna pick it out? Nope. I don't have time. Go ahead. Pick it out. That was when Kmart and Sarah and everything had in the local neighborhoods and they just delivered it the same day and I'm like, okay, it's that kind of stuff I had to let go, Dave, I, I couldn't, I couldn't keep, you can't keep your normal. I, I, it wasn't normal. I, I, I didn't have the normal experience here in the neighborhood with my neighbors were doing, going the pool and everything else. Yeah.
Terri Tomoff (25:38):
My daughter was there, but I, I would get there and like, oh, I hope everything's okay. So I don't have to get right back to the hospital. Every night we had suitcases packed by the doors, always at the ready, because if Ryan got a fever, we're out the door and that happened many times I've been ever around the clock at any time of day or night, I had to go to the hospital. So even at one, two, o'clock in the morning, two o'clock in the morning, three o'clock in the morning at any point in all these years, we've gone. No matter what hospital actually see, I shouldn't even say just Georgetown. That was where Ryan started off his treatment was there. But yeah, it was, uh, I, I can't thinking back as, as you could tell him talking faster because it was just, yeah, it was nonstop. I mean, if I could sit and read a book for a little bit, I think when I would get back from the hospital, sometimes it was doing my laundry. And just maybe sitting back, maybe watching a TV show without interruption, if I could. Yeah, it was, it was crazy.
David Reynolds (26:37):
Definitely rollercoaster of the two.
Terri Tomoff (26:39):
Channel. Yeah, definitely rollercoaster.
David Reynolds (26:40):
Definitely clear. So I wanna go back to the quotation because you're obviously an outstanding mother and you know, a wonderful wife and, and thank you and all of that and a great writer. I have to keep going back to that. And I just found it really interesting that you carefully selected things to put in there that other people had said. So I wanna know how you selected those. How do you find them keep up with them? And do you ever find yourself returning to those to offer gyms of wisdom or encouragement to other people?
Terri Tomoff (27:13):
I do do that. And David, when I was writing the book, I was a day, I, I don't know what made me think about it. I was one of my long, eight to 10 hour days. And the light bulb moment came in and said, oh, I, I, I think I'm gonna do a quote for introducing every chapter. So I just started preliminary. It was probably late in the night and I was looking at different things. Well, the next day I woke up, I spent 10 solid hours. I stopped for lunch and I read thousands of quotes and I matched, I, I probably called it down to like the top hundred and then whatever, how many chapters I have 31, 32, then I top the top 32. And then I try to select those. That would go along with the chapter. Just like you said. And have I gone back to 'em?
Terri Tomoff (27:56):
Yes I have, because I know they're powerful. And the only one that's currently living because, um, you have to be careful when you're quoting other people. If people have passed away, you can easily quote them. There's a well Maryanne Williamson quote in the back of the book that I just absolutely love. I didn't ask her, but I figured if it was out and people are putting on handbags and tote bags and everything else, I, I was probably put in the clear and she's a loving, generous kind person. So I didn't think that would be a problem, but they all, you mentioned the Gandhi quote. It's beautiful. I mean, there are just, and I, it just cap and didn't it. Don't they just encapsulate what is coming next in the, just by one little quote from somebody. Yes. Took me a long time. I was very deliberate and very painstakingly. I selected those. I wanted to make sure that they were exactly what I felt and how this would connect with the book. And I think I, yeah, I did a, I did a good job, I think on that. So thank you for pointing that out. I'm glad you're not the only one I've had other people read to me and say, wow, that was really, I love that. I love that quotes before the chapter heads.
David Reynolds (28:57):
Mm-hmm,
Terri Tomoff (29:09):
It was a surreal moment. I felt like I was outta body experience. I I'm, I gonna say it right at the top, because that's exactly what it was. And I'm a gal. I love a good gala or whatever. And I love going to the tables and looked to see if I could find airplane tickets to somewhere or a really cool piece of jewelry or something. And the money's always going to charity. So it's always a good buy kind of thing. And that night there were beautiful gifts laid out. I couldn't even, I never went to the room. I didn't even go to look to see what I can bid on. They would come back to the table and like we're bid on this. And we bid on that. I knew I was sitting down, but I was just floating because Scott Harris out of New York city saved my son's life with the 12 outta 12 match, by the way.
Terri Tomoff (29:53):
And when we met him, we were at a party for life in Manhattan. Well actually at Long Island and we got escorted up there and all, and be the match was also there. So the national mayor donor program, and it was only a few years after nine 11. So they were doing firemen and policemen. They were honoring families. So it was a double gala kind of thing. And they had Scott's family sitting on the opposite end. So we were talking 500 people. And then we were on the other end. Well, after we had the meeting in the front, of course in the room and with a standing ovation for like eight minutes, by the way, Scott's family came over to our table and we started just hugging and just a wonderful experience. And I was just so poignant and powerful. I can't even, I mean, trying my, my best with my words here.
Terri Tomoff (30:35):
But one thing that was very interesting to me was Scott's family is from Poland. My father's side, this family, oh, both my parents are, but my parents were both born here, but their families were born in Poland. And so Scott was also Polish blood and a Jewish man and Ryan and him have a 12 out of 12 perfect blood matches. So there is something that goes back in the bloodlines for all of us. And that's why they want people of color and people of different nationalities and mixed marriages to be in the bone marrow registry. That's such a big thing that to get these folks in there, because there could be a potential match dating back 200, 300, 400 years. We just don't know as the marriages and the children are being born outta these marriages and the how the blood, if people need that, God willing, there's, it's gonna be target therapy and we're not gonna need that.
Terri Tomoff (31:28):
But right now in 2022, that's where things are going for a lot of people that need matches and need to be in this system. I know Dr. Kurtzberg and Duke University, she masterfully put together a program for cord bloods. And so like a bigger kid might have two or three cord bloods, but all the young pollies from the court, but, uh, little baby could use, uh, they get about 40, 50 CCs, maybe a hundred CCs of, uh, blood and marrow. But Ryan had 961 CCs of marrow coming out of Scott with a perfect match. So that lessens the graft versus host disease, people pass away from the graft versus host because it's, it was not really a good match. And so they have a lot of problems. Yeah. Good question.
David Reynolds (32:14):
In addition to Scott, you've met and been supported by many people, which you've already mentioned what we talked about. Gratitude. Yes. And so many people in the past 20 plus years, and you dedicated an entire chapter, the village chapter to more than 50 of these friends and family and medical professionals. It might be a difficult ask, but from whom have you learned the most during this time period, who's been your greatest teacher and what is it about them that leads you to hold them in such a place of highest esteem?
Terri Tomoff (32:46):
Well, every single one of 'em, I absolutely adore and I love, and I love them, but there's one particular family, I guess I'm gonna have to just shout it out. Is Sharon and Lee Johnson, Sharon and Lee lost all three of their children, their first one to cancer. And that's how I met them. And then their other two children died of other causes. One time I was with Sharon and Lee and with Sharon, I was at a quiet moment with her and we've been friends ever since last 20 plus years. And I said, how do you get up every morning? I just do. I have things to do. And she was a second grade teacher. She finished up her career in teaching and they just live a very humble life. And they have many friends and family that have developed over the years and her daughters and her older son's friends and her, her son, Chad, who passed away due to cancer, who was only 12.
Terri Tomoff (33:45):
So there no children, but the other ones were, uh, young adults. So they had friends and people were getting married and, but they have developed them. And so their grandparents too, like her nieces and nephews, they're also grandparents, too. Her daughter's friends or her older son's friends. And I just think that's a beautiful story. And when I'm having a tough day and I have my children, I, I think of Sharon and, and that, that, she's my muse. If you wanna, if you will, if you wanna call it that. But she's the one who gives me the solace and the hope. And she is just the most wonderful person. You'd never know it. If you met her, unless she started talking or you asked her and then she might bring it up and so forth. But I think hers is very important and very powerful. And there are a lot of people in the cancer world, right? You lose maybe one child, God forbid two, but they lost all three of their children for various reasons. The first one cancer and the other two for other reasons. But I'm just saying, can you even, how do they, how do they exist? But they do. And they're loving and kind, and they're giving back and sharing volunteers at Brass Camp every summer. So that's a beautiful moment for me. So I, I really think hers is really, really powerful.
David Reynolds (35:01):
Thanks for sharing that.
Terri Tomoff (35:02):
Yeah.
David Reynolds (35:05):
I'm looking at this quilt behind you on the wall. Yes. And I know you, I know you quilt.
Terri Tomoff (35:10):
Yep.
David Reynolds (35:11):
As I look at it, as soon as I saw it, I thought, is that the material for a pair of Ryan's pants
Terri Tomoff (35:19):
David Reynolds (35:20):
Be, just have to know how the loud pants thing started. I think that was the description. The book was loud pants. Yep.
Terri Tomoff (35:29):
The loud pants. Yeah. Yes. The quilt behind me though, and I know the S can't see it, but it's called manufacturing, sunshine. I won a blue ribbon at our local quilt show. And it was because I was going through a tough moment and I needed to work with very bright, loving fabrics. You can see the, the colors and saturations are really deep. And I was manufacturing, sunshine. I, I thought to myself, I'm sitting here with my machine and I'm like, I'm manufacturing my own sunshine. And that is what my blog is now manufacturing, sunshine, cuz I haven't manufactured a lot. But going back to the pants, Ryan, for some reason, he bought one pair and he wore it somewhere and he had such a cool reaction because he's smaller. He looks like he's a cancer survivor. He's his hair is thin and so forth. He's five, two, but little bit more frail looking than everything.
Terri Tomoff (36:14):
But I, I said, if anybody can rock those pants, Ryan, you can. So he bought his first pair and he wore it to some event and he got like a really good reaction. So he's like, well I think I'll order a second pair. And he's got shorts too. And he has it on the holidays. He's got flags flag day. And for 4th of July, he's got different things and he has ties to match. So it really has morphed into something. And if he does any speaking engagements, he likes to wear 'em even to go weddings. He wears his loud pants and he sticks out, but he's gonna stick out anyway. So why not do it with fun? Think it's a really good thing for him.
David Reynolds (36:49):
That's great. That's a great story. Looking ahead. Mm-hmm
Terri Tomoff (37:06):
Oh, of course. Yes. Well right now I'm in the midst of, uh, actually the book is almost written. It's gonna be called Joy Ride Journeys and it's about car stories. So get in and drive with me. I wanted something very light and easy. It'd be an easy read for people. It's not gonna be as long as the focus fight, that's little over 300 pages, but this will be something small. And David really when I started investigating more and doing some research on, I wasn't planning on doing any research, but I had a research cars and so forth and I've never read Current Driver magazine, but I know people who have, and I wrote about them. And so it's just, you know, a, a little mix of everything. And I realized as we sat through how many years people have been on earth, I realized that there's only a very sliver of time.
Terri Tomoff (37:52):
We've only been driving cars for just a little over a hundred years. So a thousand years ago, 200 years ago ago, no cars was horse and buggy or horse, right. To get along or shoe lover. So I'm thinking maybe a hundred years from now when there is no cars on the road or people are gonna read something and like, can you believe that they were driving their own cars? This whole idea came up to me. So I've been working on that and I've got some really good stories from people from all walks of life who have shared story with me. And I may do it like a repository of something where people have like, they wanna share funny car story with me. Then I might have like a sequel to that too. I'm thinking about that. So I wanna have something fun and light. We were in the car van so many times back and forth in the hospital and I, I do love cars.
Terri Tomoff (38:35):
My favorite one is a Corolla. That's 20 years. It's 21 years old. Now I think I started with that. And just our vans cuz we named our cars. Gina was one of my vans, the green monster that we went back and forth to Georgetown with all those years. And that's what I'm gonna focus on now. And David, I'm leaving on the 27th, I'm doing an epic trip to Alaska driving a 2012 Honda accord. So I'm gonna be blogging about it and writing about it. And who knows where it'll go? The name of the trip is Annapolis, Maryland to Anchorage in an Accord or bust.
David Reynolds (39:08):
Okay. Well I look forward to the, the great car stories on that. So that's a great what's next? Yeah. Final item is always wide open. Is there anything else that you want to share? I should have asked about,
Terri Tomoff (39:21):
Well, I guess I'll end too with posttraumatic growth and gains. I talk about that towards the end of the book and it's not for everyone David, about posttraumatic growth. And that means if you went through a trauma, say a war veteran or cancer survivor, or you, you had a bullet come through you somehow errant or whatever. And how do you face that? And do you start a foundation? Do you? It's not for everybody. And we haven't started a foundation, but we like to participate with different foundations that align with our values and so forth. And I think that's a big component. Look, chemo lymphomas has already started by a guy who lost his daughter back in the seventies and he wanted start something and that its morphed and look at, they they've done beautiful work worldwide. Right? A lot of the foundations, Alex lemonade stand, I'm thinking about the national ones.
Terri Tomoff (40:07):
I list him in my book, the national, the big national ones. And then of course the local ones, how do they channel their grief? How do they channel their loss and as posttraumatic growth. And I added gains because I think for us, we've gained. We've gained support, but we've gained gratitude. We've gained love, hope, support, inspiration from so many people from so many walks of life that you can't discount the positiveness that comes out of posttraumatic growth and gains. And I read that in 2015, riding on a plane, across the us to get out to Zion National Park, to hike over there. And I was reading an Oprah Winford magazine. I'm like, oh my gosh, there's a name for what we do posttraumatic growth and was written by Jenny graves. It's a really interesting article. And it goes in explaining that whole thing. And Dr. David Eshi at a North Care University of North Carolina Chapel Hill coined the term posttraumatic growth and gain. So I think that's really interesting that we even have that right, but there's whole studies on it and it it's really wonderful. Like I said, it's not for everyone, but if you wanna help yourself and help others, then that's a great way to do it.
David Reynolds (41:15):
I'm not surprised you ended with a positive spin around traumatic events with gratitude rolled into your response and an encouragement to people to do something positive themselves for others or to help themselves. We could talk for a long time. Uh, you, I just wanna thank you for
David Reynolds (41:32): Spending time with us today. I really do appreciate it.
Terri Tomoff (41:35):
Oh David. It was my pleasure. Thank you so much. I'm hoping to get the word out and don't forget to advocate for yourself when you can. So thank you. Sure.
David Reynolds (41:43):
All right. Have a great day.
Terri Tomoff (41:45):
All right.
David Reynolds (41:47):
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