Latest / Tom's Hirschsprung's Podcast / Episode 3 - Part 2 of my interview with Kyla Thomson @kylact

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Episode 3 - Part 2 of my interview with Kyla Thomson @kylact · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirshprung's Podcast, where our provide a look into the
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remarkable experiences of the most inspiring people around Hirshprung's disease and sports. And welcome
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back to episode three of Tom's Hirshprung's Podcast. This is the second of a
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two part episode featuring the excellent Kyler Thompson. Again, thank you very much
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for joining me. Once again. We ended the last episode for those who
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haven't heard, talking about the miraculous medical miracle that is Bellatops and your daughter,
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and we led off and we finished the last episode talking very very briefly
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about August twenty twenty three when you were waiting for a new transplant for Bella,
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for a new valve for Bella. What I want to get the idea
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of is what was waiting for the call like, and then when you got
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the call and then sort of the after after birth of that as well.
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So obviously you're waiting for the call put on the transfer less in twenty twenty
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Am I right in saying that? Yeah? And then so you're waiting for
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the call for around three years or so, how how did that feel for
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you? Yeah? I was I still remember all the dates. It was
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like exactly three years from the time she got listed to the time that she
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received it. A very difficult three years of waiting for that call. In
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December of twenty twenty two, we actually did get the first call that didn't
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work out, and the waiting was it was different waves of emotions, big
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emotions. I remember when we went to Toronto said Kiss Hospital and they assessed
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Bella for a bowel transplant, and at that time she had been rejected by
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Edmonton, the only other place in Canada that does the bowel transplant for kids,
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and they rejected her because like, so, she's in bowel failure.
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She's surviving off of IV fluids, and the doctors are telling me, okay,
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she has no more IV access. If she doesn't get a bowel transplant
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with failing vowels happening, she will not survive the next five to ten years.
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And so we reached out to Edmonton the Stollery Children's and they had said
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no, And that was really hard because they had said no because they just
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had not had experience with giving a solid organ transplant to a child who's already
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had a bone marrow transplant. That was their worry. They were really worried
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about how this would affect her immune system, and they weren't confident, and
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so that was really a big hit because I'm thinking, Okay, we know
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what her life saving surgery is, and now it's been rejected by the first
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place we reach out to. But thankfully, within a week's time, our
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specialist reached out to Toronto Sick Kids and they accepted her right away. They
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were so confident and that helped me so much because I was just coming like,
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you know, I was like, oh my gosh, nobody's going to
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save my child with this surgery. What are we going to do? And
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SICKS is like, Nope, We're going to do it. It's going to
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be great. And I was like, oh phew. So now we're traveling
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across the country to get you know, get her seen by these specialists in
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Toronto and they did an assessment of her that took about two weeks, and
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then they listed her and said, Okay, we are confident we can do
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this. It's going to be difficult. Basically, just like the conversation I
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had leading up to her bow marriage transplant, they had explained, we will
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bring your child so close to death for it can't at saving their life.
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And so I was going through all of that again, I was like,
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oh my goodness. Okay, so like another mountain that was really daunting,
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but sick kids made it amazing and they made it as hard as the three
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years were to wait, they helped in amazing ways. So the weight was
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mostly difficult because her little body had no vascular access because of hersh runs.
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She's nine at this point, and she because her bowels were not working.
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She was surviving off a TPN, surviving off ivy fluids, and at that
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point she had had thirteen different central lines removed and put in for various reasons.
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There was a couple times we took them out because we thought she didn't
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need it anymore, and then that ended up scarring that vessel. We didn't
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know right, there was a couple that did get infected around bone marrow transplant
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time, so her whole vascular access was just scarred. And they were like,
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okay, well she has one access point left, and that was actually
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a collateral that had developed because her SBC is completely scarred. So not only
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did she have a bone marrow transplant, but now she had SBC syndrome,
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and they're like, Okay, the odds were really stacking up against her for
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this boat, this bowel transplant to be successful, but we're still going to
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try. Yes, So sick kids still gave us that confidence, like this
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transplant will save her life. We will get it done. And so the
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only hard part of the weight was they had told me it, if we
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lose this last collateral line, then there is no chance at forgetting this transplant.
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So the weight was so hard because it was daily this central line not
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even like basically like a glorified pick IV line in her arm that we were
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relying on. So it was twenty four hours of me accessing this line every
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every twenty four hours making sure it was working. And the amount of mental
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exhaustion that had on me every day for three years, I think it aged
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me, like I think like mentally I'm like one hundred and five right now
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because of that stress every day. So you know, that made it the
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hardest part because knowing like any time I checked that line and it doesn't work,
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her bowel transplant is out the window. And so that was that was
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really the most difficult part of the way. That's an awful lot of responsibility,
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isn't it on your shoulders and knowing that right if this, you know,
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if this doesn't work, if I don't do this, if I don't
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check it twenty four hours, then you know that's on me. And yeah,
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that's but I also want to get to when. So when the great
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news, when you get the call, and so you've been waiting for the
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best part of three years or nearly three years to the day you said,
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waiting for for that call. What was Was it relief? Was it excitement?
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Was it a mixture of lots of things? The feelings when you when
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you finally get that call, Yeah, it was. It was definitely a
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relief and excitement, no nerve. And I think that's because of the you
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know, the two and a half years prior plus the first call that didn't
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work out. So like when we when Bella was first listed, we were
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so like we're like Bella knew this. She was never nervous. I mean,
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this was like surgery number thirty for her, So she was not she
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doesn't stress about surgeries. She was very excited because it was daily pain bowels.
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She knew they were failing, she knew they were causing her daily pain.
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She wanted this transplant so bad. And the first year, I remember
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them telling me like, Okay, have one bag packed ready to go the
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emergency flight. It's going to pick you up. You have room for one
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bag. So I remember having that bag by our front door for the first
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like year. And after the first year, I got really discouraged and I
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unpacked that bag and I said, whatever, when the call comes, I'm
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just gonna throw whatever I need in a bag and we're going to go.
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And then the second year went by and I was like things got much more
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stressful with her line access and her pain, and I was really just in
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survival mode, thinking, Okay, we just need this call call to come,
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but I'm just like keeping my head above water until it happens. And
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the first call that came, we it was December, it was freezing cold.
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It was a difficult flight. Took you know, over fifteen hours to
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get in this tiny little ambulance plane in Saskatchewan to Toronto. We get there,
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they try to preper and they're like, Nope, we're gonna wait,
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and then nope, we're gonna wait. And then the next morning they're like
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they they tell us they can't do it and for whatever reason it had to
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do with the donor at that time there, their organs just weren't Bible.
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So they sent us home within twenty four hours of just being there. And
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that was, Oh, that was so hard. That was so hard.
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We you know, after that wait and then we're like, Okay, this
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is gonna be relief and then gone. So that was December eighteenth, twenty
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twenty two, and then we jump ahead to August twenty twenty three and we
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get the call and it was warm, it was and Bella was sitting down
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having lunch, My little boy was playing in the living room. Lyle was
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at work and at that point when we got the call, and I,
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you know, I was just expecting my nurse to be like, okay,
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blood work on Tuesday. You're going to do this. Like I didn't expect
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it. I was just like not giving up. But I was like,
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I can't hold onto this feeling anymore. It's just going to happen. When
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it happens. I need to focus on keeping my kid alive. That's all
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I can do. Yeah, So it took me by surprise when she was
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like, we have we have a bowel for Bella and I was like what
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And Bella was eating lunch and she dropped her fork and she's like, did
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we get the call? And I'm like yeah, and she's like she just
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jumped up. Yes, She's like yes, call dad, Call dad.
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She was just like so bomped curing at the table. I'm like, then
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she and me having, you know, gone through the last experience of just
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like I was like cautiously excited, but everything was so smooth, even to
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the point where it's like they told us before, like there's only a room
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for one parent on the plane, so it's like my husband like he and
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my son they would have had to wait, possibly not making it there before
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her actual surgery. And we get to the airport and they're like, nope,
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we we've approved it. Dad can come to my son. Whalen stayed
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with Grandma and grandpa. Our flight was awesome, we landed, Things went
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so smooth, and even through surgery. Both of her surgeons told me afterwards
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they have ever seen a bowel transplant, like a solid organ transplant go that
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smooth. They told me before as they were prepping for the surgery, they're
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like, it could be ten to twenty hours. We will come out halfway
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through, They're like, don't be alarmed if we're taking a break. This
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could be a twenty hour surgery. It's all planned, will come and update
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you. Don't be worried if you don't hear from us for the first four
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hours. So we're like, okay, we get in there. Within the
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first hour. The surgeon calls and I'm like and be like he's like the
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first hour, He's like, I'm everything's great. He's like, don't worry,
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I'm just going to get a coffee. I don't want you to see
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me at Starbucks and get scared because I'm not in the surgery. And I
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was like, are you kidding me? Right now? He's like, it's
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going that well. He's like, it's amazing. She's doing great. And
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then on top of that, she was done and in the ICU in eight
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hours. Wow, so like two hours shorter than how these transplants typically go.
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They said it was a perfect match for her size and everything, and
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from there she had a great recovery as well. Fantastic no I am.
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Something that really struck me with that story that I don't think people would understand
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unless they had a connection with hirshbrongs was cheering over a new bow. I
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think that's absolutely brilliant. I think that people wouldn't I just wouldn't understand that
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if if they hadn't had Hirshbrungs on knew anything about the Hirshbrungs And I just
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think I think that's absolutely fantastic. And the Starbucks also makes me laugh.
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Yeah, well you see that they were shouldn't you be operating on my daughter?
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Yeah? But that's that's absolutely brilliant and such a heartwarming story as well.
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It's again is why is why I advised you. I'm really glad that
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you accepted because this is such a story of somebody so so happy, so
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full of life, having been through you know, eight times as many things
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as most people will ever go through, but it's just so happy and and
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on that point, so you had surgery, all goes well, then you
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have to have the flight back and how how was everything when you came back?
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Did you notice sort of a difference straight away or did it take a
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little bit more time. I noticed a huge different returning home. So Bella's
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had so many long term medical stays. I mean this day was four months
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in Toronto. She stayed longer for other reasons. So it wasn't new to
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us to be gone for a while in hospital and come home. But what
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was different this time is the relief. Every other time we would come home,
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it was so overwhelming. I would have a new I would be trained
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for a new way to use her line, her IVS ostomy changes, new
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medications daily IVS that would run twenty hours, sometimes they would run ten.
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The record keeping I had to, you know, record her ins and outs
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so meticulously because she was surviving on IVS and that was all gone. I
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didn't have to deal with any of it. Instead, I was coming home
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to less medication for my daughter, no ivy fluids, a world of freedom
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for her. So it was such a huge relief coming home this time.
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It was exciting and not overwhelming. Yeah, and I imagine that you mentioned
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it before, but the relief as well of not having to do to do
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so much. I know you posted again and a postal Instagram where you went
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through the amount of medication that was used pre pre Bow or yeah, pre
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new Bow, and the medication post new Ball. It was just night and
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day. Yeah, yeah, I would have you know, twenty fifteen to
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twenty syringes lined up. A lot of them had to be liquids because she
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couldn't either swallow uphill or it just had to be YouTube. She's had,
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she had injections, she had IVS, and it's down to like five pills,
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tiny pills that she can swallow in the morning, she has, and
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that'll come down to one in the coming months. And uh, one of
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her injections right now, her blood cinner is going to be done in February
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and that'll change to pill form. Yeah. And I I donated all of
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my brand new package, like I had so much iv supplies, IV pull,
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her IVY pull, her IVY pumps. It was so exciting to give
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those away or give them back. I didn't. Donated a lot of my
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supplies to our local vet vet office veterinarian office that they could use. And
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uh, yeah, it's just huge relief, unpacking and getting rid of so
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much. That's fantastic. That's really really good. Going back slightly to when
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you got the call, could you and I suppose this goes for both,
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but when you got the call and when you came back, was there a
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sense of because you'd obviously had to live so long the same the same way.
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Could you sort of believe it happened or was there a sort of sense
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of is this a dream type thing? Very much so, is this a
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dream? I remember them, you know, they always tell us like the
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bowels are so rare and so difficult to deal with that you know, it's
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just mind boggling to me that, like hearts and lungs and kidneys and livers
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are so easily transplanted all the team all the time, but bowels are not.
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It is very very rare and very very difficult, and a very long
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wait. So I was just it was like I was floating in a dream
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for a solid twenty four hours until she came like out of surgery, you
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know, partly anticipating this failing again, not working out again, because they
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always warn you. They try and prep you, like the first call they
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say, you know, you can prep a kid for the recipient for the
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transplant, give them. They have meds and ivs right up until they're in
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the or. Because there's timing around the company. The surgeons that take the
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donor bowels out are different than bellus surgeons that put the bowels in her.
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There's a whole list of things that have to come together for that to actually
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happen. So when your child is ready to go into the or to receive
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their new organ and the other team is just taking them out and making sure
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they're viable, there is a moment in there where they would say, actually,
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no, we can't use them. So there was there was still points
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right up until, like you know, the first hour when she's I'm just
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they're just getting around anesthesia that I was still just on that edge of like,
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is this actually happening? Is this going to happen? So I think
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I really like I was on. I was in this cloud dreamland. Everything
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was going so smooth that my confidence that this was working out got higher.
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It built and got higher as the time went on, and then it really
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hit its peak when the surgeon called me and was like, I'm just going
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for a quick coffee. Things are great. And then that's when I was
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just like, this is the best dream of my life. It's reality.
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Things are good. And then it was just like okay, when I see
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her, when she comes out of the O R and I see her,
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then then it's like reality hit me. Then I was like, Okay,
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we're in this, this is this is our new reality. Yeah. Yeah,
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and then and then start to really believe from there, yeah, and
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it and then it kind of switched to more of like, Okay, the
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main part is over, but there's still risk of rejection, and that's they
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told me. Okay, that's the solid two to three weeks before immediate harsh
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rejection is kind of you're out of the woods with that, Like there's always
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risk of rejection, but the worst part is in those first two to three
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weeks. So then I was kind of just bracing for two to three weeks
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of like, Okay, we have new bowels. This is amazing, this
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is what she needed to save her life. Now that make sure rejection doesn't
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wreck anything. And thankfully it did not. That's actually that's fantastic news.
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So then you had that sort of two or three weeks again of having that
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sort of high anxiety and waiting and what have you. And then and then
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is it relief again? Is it's that sort of relief all over again of
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Okay, I can I can breathe a bit more now? And yeah,
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yeah, Like then it was and through that things that helped, like she
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you know, after six days, she was able to walk again. She
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got stronger, and stronger. She was able to be off more medications that
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kept her like very sleepy, Like for the first week she was very like
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just sleeping, like her body just needed the rest, and you know,
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her strength built and the more the further we got from those first three weeks,
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she was up and like I remember the first day, we got up
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and she walked outside and well, I shouldn't say walked, she went in
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a wheelchair and we just got outside, Like you know, we've we've never
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taken those moments for granted. We've been there before where it's like, okay,
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we've been my child's been inside a hospital room for three weeks, and
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we're now breathing fresh air again outside this building. Like that is important for
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us, Like those milestones. We do not take those for granted, and
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we cherish them. So the day we got to just sit outside in the
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wheelchair was like it lifted her spirits and she was happy, you know.
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And that went on to working with physio to gain enough strength to walk not
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just down the hall but to the elevator, then to the front doors of
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the hospital and then outside to feed the pigeons. That was I think you're
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absolutely right. I think people take those moments for granted, and it's only
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when they're sort of taken from you and then you think, oh, actually
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this is really really important. And walking and because like I said, feeding
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pigeons, feeding ducks is it's something we just we just take for granted.
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And I think that's really important to appreciate those moments, being outside, having
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fresh air, all of that stuff is so so important. And I just
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on sort of being grateful for things as well. I want to touch on
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the charity work that you do with you and Belly. I was having a
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look through and you're involved in so many charitable charitable organization should I say I
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wanted to talk about There's loads of what to go through, like Make a
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Wish and and the David Foundation, but I want to start with the David
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Foster Foundation because am I right in saying that the organ donah Foundation based in
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Canada? Yeah, so a lot of people know David Foster as the world
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renowned music mogul uh and he so he's Canadian and he has quite a story
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if if you look at he explains it all on their on their website,
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but he it's I think it's a family related story to a kiddo he saw
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in hospital and understanding from that experience what organ Donation for Pediatrics does for families,
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and understanding the amount of kids in Canada that need to travel to get
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these surgeries done. He knows that Toronto Sick Kids is the only place in
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Canada that can do a lot of these organ transplants, and so he hit
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his foundation is set up to support families with accommodations, meals and travel from
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where they lived to where they need to get treatment for their transplants. Fantastic.
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They had a gala that you and you and you seem to have a
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lot of fun, yes, which it was. It was amazing. They
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invited us to that gala and we got to see to be there as not
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just as a a uh you know, we were in waiting that time,
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so not just as like a transplant family in waiting. But Bella got to
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see what world renowned support like these big people, what they can do for
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kiddos in hospitals. She got to see firsthand what raising funds for kids like
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her in hospital can do for families. They shared our story and they shared
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another story of kiddo who had a heart transplant that was a younger little girl
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close to Bella's age. She got to meet her, play with her,
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understand her story, as well as be entertained by this massive gala. It
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was a musical like it was Broadway was the theme, and she, I
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mean that's right up errally like fashion, dancing, singing. She had the
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best time. Meanwhile, she like, you know you mentioned this earlier.
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As a person with hershrungs, her pain tolerance is through the roof, so
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she's at this point still in daily pain. But two hours before the gala,
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she was sick, vomited about three times. Her bowels were giving her
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hack pseudo obstruction was causing problems, and she rallied like I'm thinking we're not
29:03
going to make it, and she was like bound and determined. She's like,
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I am not missing my chance at a gala? Are you kidding me?
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So she's like, whatever it takes, mom going and I'm like,
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kid, I'm like you just like you got sick, It's okay, honey,
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Like I know it wasn't like the flu or a stomach bug. We
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knew it was her bowel function. But she's like, I don't care what
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it takes some going and just to see what that gala did for her was
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enough, you know, let alone raising eleven point two million dollars for the
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foundation. It was just an amazing experience. Eleven point two million dollars for
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families in from the Debbie Foster Foundation in Organdona, which is absolutely fantastic.
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U. But yeah, it's slightly said with the pain tolerance level and if
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and the determination it brings, or the turn determination it seems to bring that
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if you really really want to do something, then you'll find a way.
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And that's a again, what I want this podcast to be that yes,
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you know hirsprungs and various other illnesses and diseases, yes they do. They
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don't help, but they don't they don't stop you from achieving necessarily what you
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want to achieve. And you know, if you want to go into sport
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or music or fashion or whatever it might be, just because you have hirshprungs,
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it doesn't mean that you can't achieve that. And Belle is very much
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living proof that she's incredibly or incredibly determined from from what I've seen, from
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what you've told me, and she just doesn't let it stand in a way.
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No, No, that's right that's right. So with with other charities
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that you've worked with or ambassadors for, Make a Wish was another that I
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came across that you are ambassadors for. Yeah, so yeah, So Make
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a Wish is of course in lots of countries. I think it's worldwide,
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and then it has it's by province as well, so in our province of
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Saskatchewan, Sabella's a Saskatchewan Make a Wish Ambassador and then for like Make a
31:33
Wish as a whole. So she became an ambassador because her story was so
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well known and we wanted, of course to support the foundation, especially at
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the time, like she was listed originally for a Wish when we went through
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her bone mail transplant, but we wanted to wait until she was old enough
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to decide what she wanted her wish to be. So around that time,
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Make a Wish contacted us and she wrote out what she wanted her wishes to
32:07
be. And she was about five or six, and then six is when
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she got listed for a bowel transplant. So it had been you know,
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six years of us understanding what what Make a Wish does for kiddos, and
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they knew our story well and and they were happy to invite Bella to be
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an ambassador for the program, and so we're just we're happy to share,
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but you know, any sort of companies that have helped us. Our journey
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has been so long, and bell has been so vocal in at herself and
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we've grown such a large social media following that it's a way I tell Belle,
32:52
it's a way for us to heal as well when we help others heal.
32:57
So if we can help others to being ambassador for sick Kids Hospital,
33:01
Make a Wish, Raal McDonald House charities, when we can use our energy
33:09
and our experience for good, then this helps other kiddos just like her.
33:17
And so anytime we would do philanthropy work or ambassadorship programs or any sort of
33:25
sharing online for these organizations, I would tell Bella when you do this,
33:32
when you share a video about the raw McDonald House, or create we create
33:37
tiktoks about Make a Wish, this is helping other kids like you, and
33:43
that's a good thing to do. Of course, we'll do videos and things
33:46
like that just for fun, but I always like to make sure she understands,
33:52
like, what's the purpose of this, Why are we putting this online.
33:54
Why are we sharing this. We are helping this group of people that
33:59
is similar to our story too. That's absolutely fantastic, Absolutely fantastic. Yeah,
34:05
that's helping people is It's a lot of people talk about saying they want
34:09
to do this that the other, but to go out and do it is
34:14
absolutely fantastic. And more on the social media presence. I know you talked
34:19
right at the very beginning when we were talking about being hospital and about a
34:22
way of staying in touch with the outside world. When did you and Bella
34:29
start to realize that that your tiktoks and YouTube were getting to reach so many
34:37
people. Yeah, so TikTok was really it's so fast paced. So when
34:45
her first video went viral, I was just learning how to use the app.
34:50
I had no at that point. I was doing a lot of advocacy
34:55
work on my Instagram page and my Facebook page. Those were my primary ones,
35:00
and we had about thick nine hundred followers at that time, and I
35:07
was like, oh, this is good. This is a lot of people
35:09
I'm reaching. Like I knew our story was very rare and very unique,
35:15
and I'm a teacher. I want to be educational. I want to help
35:19
other parents, and Bella loved helping me with that so Instagram and Facebook.
35:29
It was like I was just chucking along thinking things are great, thinking I'm
35:32
helping lots of people I know us, But I had no idea around I
35:37
did. I had no idea the reach that I could have. So TikTok
35:42
definitely elevated that for us. And at this point, I was sharing our
35:46
story to help other moms and dads like me and just share our story in
35:52
hopes to help other families really and and just you know, have a way
35:58
of connecting with people outside of the house fill. But when TikTok took off,
36:02
I was just playing with the app. The video that took off was
36:08
literally just the back, like the back of Bella's head she was drawing,
36:14
and I was just like, okay. I was sitting on the edge of
36:16
my bed because it was COVID year. She's Ingrade two, she's working on
36:22
a class assignment, and I'm just like, let me play around with this
36:24
app. So I pressed record and she's drawing a picture and I put it
36:30
to music. That was it. It goes viral, and I'm pretty sure
36:35
it went viral because Bella having Dorfism she looks a lot younger than she is.
36:39
So here's this young child drawing this amazing picture and people are like,
36:45
what, like, mine's blown. I'm guessing that's why I went YEA,
36:52
So overnight we gain a million followers, a million views, and I'm all
36:59
ready trying to reach people on my Instagram and my Facebook, and then I
37:05
all overnight I get this platform that's reaching millions of people. And I really
37:12
was just like, okay, I need to think smart about this. I
37:16
have a we have a unique story. If I'm going to be able to
37:23
reach this amount this level of people, I want to do it the right
37:27
way. And that's where I'm like, Okay, I I have an ability
37:32
now to say hey to all these other organizations that have helped us. I
37:38
can now say, all right, I have this platform. How can I
37:42
help you? And let's work together and let's collaborate and let's help each other
37:45
out. Because I have this platform now and I want to use it for
37:47
good and Bella wants to use it for fun, So let's combine the two
37:53
that yeah, yeah, and then from there, I just you know,
38:00
just using the apps. I you know, I took some classes, I
38:07
did some research I went online and I'm like, how can I properly share
38:10
our story as well as advocate? And I just learned how to make better
38:16
posts and take better videos and edit properly. I think I'm still at that
38:22
stage stage yet. That was another thing I was gonna mention is like I'm
38:30
still learning and I am like I asked my husband, like anything to do
38:36
with a computer. He's my it guy, and and I'm always asking him
38:40
for help. So he's like, how are you so adverse on social media?
38:45
But like you can't like download a file, And I'm like, I
38:49
don't know. But I think that's the reason why a lot of people are
38:55
really drawn to our story because it's not only unique, but I'm very real,
39:01
Like I don't I don't have time to set up a light and get
39:06
somebody to video for me, or I just grab my phone and I press
39:10
record in the moment if it feels right and if it's for a good purpose,
39:15
I'll record. So it's we're very real and in the moment with what
39:19
we do post. I think that's yeah, I think that's that's kind of
39:23
what you said. It draws a lot of people towards you because they think
39:28
actually, you're not doing a video for views for this, for that,
39:34
for the other It is very real. It is very raw, and it's
39:38
not staged or set up or anything like that. And it is there to
39:44
be informative, in educational and well, as you said, as bell said,
39:47
fun as well, which is absolutely fantastic. And I want to talk
39:52
as well, because there are various news clip of news video about you and
40:00
Bella and on CBC, And there's one particular Instagram story that that I did
40:07
see off yours. It's from fairly recent, I think, where Bella grabs
40:13
the remote and she comes to you and she says, I'm famous. I'm
40:15
famous that really maybe laughs? Yes, just tell me how how Bella you
40:23
touched on it a little bit, how how she wants to make it fun
40:27
and she wants to make excited. But how did she feel when she realizes
40:30
that that she's famous. Yeah, she she's so funny. She's like,
40:37
what we've We've done so many news interviews and radio and TV. Uh so
40:44
when when she sees herself on TV, I'm like, you're on TikTok like
40:47
that, Like people pay more for TikTok you like than commercials on TV.
40:53
Like she thinks TV is like it. So she sees herself on this like
40:59
five US a bit and she's like, what, I'm like, I think
41:02
it's so cute. Like explain to her the difference between being famous like on
41:07
TikTok and like being on like a news cat. She's like, I don't
41:13
care. I'm on TV. I'm famous, so it's kind of like adorable
41:16
that way. And I'm like, yeah, no, that's great. You
41:21
are famous because you're on TV. So she's pretty funny that way. Sometimes
41:30
when we're out and about and she'll have people come up and be like,
41:32
oh, I know who you are, and they'll want to stay hi,
41:35
and it's really sweet. Sometimes she's like okay, mop, Like she'll count.
41:38
She'd be like, that's a tenth person today. And this is mostly
41:43
when we're in Toronto, right, like when we're back home in our tiny
41:45
town. Well it's not really tiny, I mean, but in our hometown,
41:51
people just have always knowniced, so they're not stopping us on the street.
41:54
But sometimes she'll count. Sometimes she'll say, do you want my own
42:00
a ground? I'm like Bella and then but other times she's like, I
42:07
don't feel like talking right now. She's like, I never know what I'm
42:14
gonna when we go out and public. Am I gonna get like famous Bella?
42:17
Or am I gonna get don't talk to me Bella? Like she she's
42:24
like, I always am like ready to like help the people out that come
42:29
up to us, whether they're just like super excited that they just said hi,
42:32
or they she actually gets a picture. And then there's like some people
42:36
where she's like, no, I don't want to take a picture and I'm
42:37
like, sorry, she's not feeling it today, and they're just like whatever
42:42
and they walk away. But I'm glad that she's like, you know,
42:45
she's like she's really into it. Some days she's just like, here's my
42:50
autograph. She'll sign like a napkin with like a crayon, and I'm like,
43:00
I know, I'm like, okay, I don't want her ego and
43:04
her head to get big. But then the next day she'll be like,
43:07
I don't want to talk to you, okay. Just switches from day to
43:14
day. Yeah, oh yeah, brilliant. I'm like, well that's good.
43:17
She can manage this. She's got it. She makes her decisions and
43:22
goes with it than anybody else. I think so yeah, like she doesn't
43:29
character offended. She's like, I don't want to talk to you today.
43:30
I know, I don't want to take a picture. Sorry, And I'm
43:32
like I'm in the background, like sorry, but really it doesn't matter because
43:39
it doesn't. Oh that's brilliant, that's absolute Hollywood actor. Some tips like
43:51
absolutely, I could be that could be a that could be a new TikTok
43:53
venture giving like could you imagine going up to like so you go up to
44:00
like Tom Cruise and you don't even say anything and he's just like, here's
44:05
my autograph, Bella, Well, you want my autograph, not the other
44:10
way. Yeah, that's fantastic. Oh that is absolutely brilliant. Oh,
44:17
dear the other the sort of the final part I wanted to talk about was,
44:29
I guess you've already sort of answered it in Yeah, the answer to
44:32
this my question might be being a celebrity. But what does the future hold
44:37
for for you and Bella? Yeah, I mean I given you know,
44:44
life before transplant. I really wanted to give her as many experiences as possible
44:52
as a kiddle that I was fearful that she would never get It was really
44:55
hard to tell her, like we can even leave Canada because we need to
45:01
wait for the call, right like organ donation is by area. So like
45:09
there was a lot of you know, reasons why I couldn't even leave the
45:15
country, let alone medical reasons why we couldn't travel often because she just wasn't
45:20
well. And also, I mean, how do you go anywhere with bags
45:27
of TPN and IV lines and syringes and right, so now she has that
45:34
whole world opened up to her. Just you know, yesterday I send in
45:38
an application for her passport, and uh, I'm excited that, Like,
45:44
you know, she's always wanted to go to Hawaii, she's wanted to go
45:46
to Disneyland, and now we actually can say, yes, we can do
45:50
that, let's go, you know that, and just being like a celebrity,
45:58
just having her presence be like a celebrity status. I was really happy
46:04
that she got to experience a lot that you know, quite often you just
46:09
the average kiddo wouldn't. Like, yes, we traveled to Toronto, but
46:15
still that's a big city, and we got to see a lot of different
46:20
people and go to basketball games and hockey games, and we still got to
46:27
experience a lot of those really fantastic things. Even just like living in Saskatchewan,
46:31
Like, we live in the middle of the prairies. We're on an
46:34
acreage in the middle of nowhere. So when we would travel to the city
46:39
for her medical treatments, she's like, I love the city life. I'm
46:45
a city there all. She's like, I know, I go back to
46:47
the boring home in the middle of nowhere. So I'm like, you come
46:53
to Toronto for surgeries and mouthical appointments and you want to live here now,
46:58
yes, because it's a big city. So I was just really excited that
47:04
I still was able to get her some experiences that were exciting and enjoyable and
47:08
different and new, because I was fearful that she wouldn't get to live,
47:15
you know, past the age of ten. So now, you know,
47:20
having her transplant, that opens up a whole new world for her. And
47:25
I mean, I hope, I hope we still get to see and do
47:30
a lot more things that would be you know, in her wildest dreams.
47:37
Yeah. Absolutely, So you think so you think the big the big city,
47:42
the big cities for Bella. Oh, yeah, she wants to go
47:45
to New York. She wants to go to Paris. She like, she
47:49
wants to travel and I'm just happy that I can actually like we can actually
47:52
take time to figure that out. Now. That's absolutely fantastic. Thank you
47:58
so much. The last day is just for me. Thank you ever so
48:02
much for joining me on the very first episode. Well this will be episode
48:07
three, but thank you ever so much. Of course, I love podcasts
48:13
there you know, I I like journaling and writing and creating posts, but
48:17
there's there's just so much you can share when you're just having a talk,
48:21
when you're just having a chat. So I'm really excited to share this as
48:25
well. And yeah, there's a lot in here that I just haven't been
48:30
able to say online. So yeah, kudos to your to your podcast is
48:37
going to like blow up in a couple of weeks. It's crossed, not
48:42
really conceited, But I just mean, I'm really excited to share our chat
48:47
because it's really good. Yeah. No, I've absolutely loved having you on,
48:52
absolutely love having you on. I wanted to start with an absolute bang,
48:57
and I think I have so thank you, Thank you ever so much,
49:02
And if you ever want to come back again and talk some more,
49:07
I'd absolutely love to have you on. If you want to have you and
49:09
Bella on that's great. We also she wants to come on once she's a
49:13
big celebrity, then yeah, if she becomes a big celebrity and she's too
49:17
big for my podcast, it's absolutely fine. But I need to ask her.
49:23
I need to ask her what level like when she thinks she gets there,
49:28
Like is she there now or does she think she still needs to get
49:30
there? And what does that take? I want to ask her that do
49:36
you need to meet Oprah? Yeah? Like who do you need to meet
49:39
or what do you need to do? I got to ask her that.
49:44
I mean, she's already We've already talked about her being on a private jet
49:47
already because like the are like, well, yeah, it's a private jet,
49:52
definitely, Yeah, exactly, Well you're halfway there with a private jet?
49:57
Yeah, like a rock are you know? Jet setter? Absolutely No.
50:05
I'd absolutely love to have you all a game. This has been the
50:07
best fun. So thank you ever so much for your time. Thank you,
50:17
thank you for listening to the podcast. Find us on Instagram Tom's Underscore
50:22
Hirshbrun's Underscore podcast. Listen to previous episodes on Spotify by searching Tom's Hirshbrun's Podcast