Talking Blood Cancer: Mother-Daughter Cancer Warriors

[00:00:00] Kate: In today’s heart wrenching episode, I speak with Teresa Webb, who is a beacon of courage and resilience. Teresa’s life has been marked by the relentless shadow of blood cancer. From her own battle with non Hodgkin’s lymphoma, to the gut wrenching moment her daughter, Summer, was diagnosed with acute lymphoblastic leukemia.

[00:03:00] Their story is not just one of survival, but one of unwavering love and unwavering hope. laughter and the unbreakable bond that carries her and her daughters throughout some of the darkest times. This is a story of triumph in the face of adversity, a testament to the power of the human spirit and love.

[00:03:22] We hope that you enjoy today’s episode and thanks for listening.

[00:03:25] Hi there, I’m Kate Arkative and welcome to Talking Blood Cancer. Today I have Teresa with me. So welcome Teresa.

[00:03:34] Theresa: Thank you,

[00:03:34] nice to be here.

[00:03:36] Kate: thank you for coming on and sharing your time. As usual in any episode, we always do ask the guests , if they would like to share with the listeners who they are, where they’re located, what they were diagnosed with or what role they played within a blood, the blood cancer journey with their person.

[00:03:52] So Teresa, would you like to let us know?

[00:03:55] Theresa: Sure, sure. My name’s Theresa. I’m 52. I live on the Gold Coast, the northern end of the Gold Coast. And, uh, my diagnosis was, lymphoma. And, then I have a daughter who also had leukemia. So there’s

[00:04:14] two different stories

[00:04:15] there.

[00:04:16] Kate: There. And so, I mean, that’s a lot to take in, in the first couple of seconds within the video to hear, but, um, when were you diagnosed with lymphoma?

[00:04:25] Theresa: I was diagnosed in 2002. with lymphoma, which was, the slow growing lymphoma, so it was a bit of a watch and wait situation at the beginning of that, and then obviously a lot of things happened

[00:04:39] since then.

[00:04:41] Kate: you mentioned that obviously you have a daughter who also has blood cancer and if you had, leukaemia 20 years ago, where were you in your parenting journey? Did you have newborns? Did you have teenagers?

[00:04:52] Theresa: At that time when I had lymphoma, I did not have any children.

[00:04:56] Kate: Yeah,

[00:04:57] right.

[00:04:57] Theresa: So I didn’t know if I was going to be able to. I had just turned 30, and that was something that I did want to do. I was in a relationship at the time, a long term relationship, so we had talked about it. yeah, I was sort of semi going to start trying at that point, and, yeah, this sort of got in the way of that

[00:05:18] and put it back a little

[00:05:19] bit.

[00:05:19] Kate: Did the doctors advise, like, because you mentioned you were watching weight, so did they advise, don’t try for babies or, how long were

[00:05:26] you

[00:05:27] Theresa: Not really, no. They didn’t really mention much about it. Which is odd. I didn’t get a lot of information at the beginning, but yeah, I did do a fair bit of research so I could sort of see what was going on and the watch and wait slow growing, seemed to go on and on and on and not really have a cure so I wasn’t really sure what was going to happen there But I knew at some point it would probably transform and then as it did eventually But that it would possibly take a long

[00:05:57] time before that happened.

[00:05:58] Kate: And how, when you hear that, you know, you’ve got lymphoma, had you ever heard of it before? The word lymphoma booklet

[00:06:04] Theresa: Yeah. Yeah, my cousin had lymphoma That was the first time I’d ever heard of lymphoma. He had passed away previously Six months prior to my diagnosis, so, I was very close with him. I had a very close relationship. I lived with him at, certain times in our childhood. He had lived with us. And, oh, yeah, he was married to,

[00:06:27] my

[00:06:27] best friend from school, so we’re very close.

[00:06:30] Kate: close.

[00:06:30] Wow.

[00:06:32] Theresa: Yeah, so, he had been diagnosed at 30 as well. And then he actually passed away at 32. He had a similar lymphoma, but it was T cell. my diagnosis was B cell. So that was the difference. He did go through a lot of treatment. He didn’t do a transplant or anything like that. I think he, he got towards the end of his treatment and opted not to continue with treatment, but he had a really hard time with it.

[00:07:00] So, we had just gotten over that. I did have a, bit of a suspect lump in my collarbone area and that wouldn’t move. You have little glands there that move. Normally, and I did notice that all of a sudden was quite hard and not meeting, and that was a bit of a telltale sign and they biopsied and came back with the diagnosis.

[00:07:23] So everybody in my family was really upset and shocked that two of us, who were very close in age and very close, had been diagnosed with the

[00:07:34] same thing.

[00:07:35] Kate: That would have been

[00:07:37] devastating.

[00:07:37] Theresa: yeah, albeit one T cell, one B cell, so that was the difference between the two. But yes, that was what I knew of lymphoma when I was diagnosed, was that my cousin had it, had gone through treatment.

[00:07:49] and had passed away

[00:07:50] six months

[00:07:52] Kate: How frightening for you. I can only imagine. I mean, I’m projecting that, but I imagine that that would have been so frightening get that diagnosis. Know that your cousin passed away and go, not that, you know, everyone’s journey’s the same, but go, Oh, I know it’s not an easy road ahead of me.

[00:08:06] Theresa: Yes, I was very shocked. I didn’t really know what to think. I’d had glandular fever when I was younger all through high school. I’d been quite sick on and off, from year seven to year 10 with glandular fever. So I sort of thought to myself, maybe that is what happened there. There was a weakened glandular system for myself, but he hadn’t had anything like that.

[00:08:28] So it was very confusing. You don’t know, I think when you’re diagnosed, you think, how did I get that? And you start blaming anything and everything that you’ve ever done or ever gone through or you think about, oh, did my mother give it to me when she was pregnant? Like all these kind of things, it was just horrible.

[00:08:47] It really is to think like that, it’s almost like trying to blame

[00:08:51] something.

[00:08:51] Kate: Or find

[00:08:52] an answer sometimes I feel when something so shocking and just kind of knocks you off your feet. You go, Oh, how did that happen? Could I have stopped

[00:09:00] it or what?

[00:09:01] Theresa: yeah, it’s

[00:09:02] really hard to understand how it happens, so I think the more research into the cause of lymphoma, the better, and a lot of people put money into research for that, so, um, hopefully more of

[00:09:18] that will

[00:09:18] happen.

[00:09:19] Kate: And was it hard to hear that news that you have lymphoma having witnessed a journey of your cousins and then going, actually, there’s no treatment required at this very moment. Was that hard to wrap your head around?

[00:09:32] Theresa: it’s really hard to think like that because, you know, At that point in time, there was a shift to watch and wait, and previously, before I was diagnosed, a lot of the doctors were throwing people through CHOP chemo at the beginning. So I was really lucky that they held off on that more intense treatment, and even when I did have treatment, it hadn’t transformed.

[00:09:59] That was a year later. It did grow quite rapidly, but there was no transformation. So, I did have some treatment and rituximab, in that theory they called it at the time. That was around more, so I had some chemo oral tablets and, but nothing like the intense chemo that I had when I had the transformation.

[00:10:24] So at the first lot of treatment was the tablets followed by, MAPFERI, they called it at the time. And, um, So that was very effective and got me through another five years, and during that

[00:10:37] five years I had Summer and then Jessie.

[00:10:41] Yes, so then once Jessie was eight months old, I didn’t feel right again and I had a recurrence of it coming back, but it hadn’t transformed again.

[00:10:52] So I went through a very similar treatment regime again.

[00:10:56] Kate: Yeah.

[00:10:57] Theresa: And I had at that point in time, I had had my stem cells taken, bone marrow taken out, after the very first lot of treatment, which had been about four years prior to that. So before I had the kids or anything like that, I did have bone marrow taken.

[00:11:16] So they were really good to have that foresight and understanding and change of treatment regime where they watch and why. and get ready for that transformation to happen whenever it happened. I was very lucky because my stem cells, bone marrow, was on ice, for about 14 years

[00:11:38] before I needed

[00:11:38] it.

[00:11:39] Kate: Wow, that’s incredible. And they call that almost, I know that people refer it to as a rainy day collection. And obviously it sounds like your rainy day took a really long time until you needed it.

[00:11:50] Theresa: it did. The girls, were a bit older. As I said, the second treatment I had, Jessie was only eight months old. There was 20 months between them, so Summer was about two or three at the time. And so they were very young. It really hit home at that point because I had two little ones and It just made me really determined to get through that particular treatment, which I knew hadn’t transformed.

[00:12:15] So I was always feeling like, well, this worked last time, five years prior to that, before I had children, and I got five years out of it. So hopefully, I’ll get that and more before it transformed, and I ended up getting eight,

[00:12:30] almost nine years.

[00:12:32] out of that second treatment. But I was really into finding everything positive about lymphoma online.

[00:12:40] I researched a lot. I followed a lot of things. I was trying to be really smart about what I did, in my health and activity and, being active was really important on everything that I, found and read. And there was a guy in the US that I found was a professor and he’d had a lymphoma journey.

[00:13:01] He’d had a couple of transformations and there was a lot of information on his website that I found very useful and seemed to work for me, in terms of, diet and exercise and just lot of things in general affect your well being. Not just what you eat but, you know,

[00:13:20] stress and all that sort of

[00:13:21] Kate: Yeah.

[00:13:22] were you able, I

[00:13:23] mean, that’s a really long time period, you know, from your initial diagnosis to when then you needed to have a, eventually have that stem cell transplant. Were you able to work within that time? I mean, you obviously had two young children as well, and that keeps you busy enough, but what was life looking like?

[00:13:40] You know?

[00:13:41] Theresa: Yeah, well the girls are very young, so, and it was really hard to work for other people because it’s something that have to talk about and, discuss and say that, that’s what’s going on, , so I, I worked for myself mainly doing things. I had always worked in the entertainment industry. when I was growing up and, my early adulthood, even when I had full time jobs, I did things on the side.

[00:14:04] Some of it turned that more into the job that I was doing. So it relied on me, to be able to be fit and healthy and active. And I worked my way up in, a bit of acting and modeling and stuff like that. So I was doing a lot of that because that’s what I enjoyed and that’s what I was good at. that’s what I’d done a lot in my life. So I felt like I had the confidence to do those sorts of things and got quite high up in commercials and in acting roles. I was doing a lot of training. I felt like I was getting better with things like that. Both girls were actually really good, with doing things like that as well when they were younger.

[00:14:40] And so we were a bit of a team, a mum and daughter team as well. On and off. I’d worked with one of them on something and. Both of them on something else. And then one of

[00:14:51] them would get a job over the other

[00:14:53] Kate: yeah. That would be tricky.

[00:14:54] Theresa: competition and that sort of thing, but yeah, I was pretty reliant on, looking fresh and healthy.

[00:15:01] No one would have ever known. I never told anybody that I worked with in the industry that I had had lymphoma. Nobody knew. At this point, I think I was into Nomel. During that eight years, I got to a point where I. Kind of forgot about it because I wasn’t taking any medication at all and I was doing really well and I felt like, well, this is going really well.

[00:15:24] I can probably turn this into something more. And, obviously when I transformed, I had to turn it into something else because I couldn’t do what I was doing on camera.

[00:15:36] Kate: No.

[00:15:37] So it requires you to pivot and that’s exactly what I think a blood cancer does in so many, areas in life is that you, you have to pivot and it’s not sometimes, well a lot of the time actually, it’s not by choice that you have to constantly pivot and change and adapt to a new life or a new circumstance that is completely out of your control.

[00:15:59] Theresa: Yeah, I was used to having to adapt and pivot in my life in general. That wasn’t too hard for me to do that because I’ve always been a bit of a survivor. So I had that in me growing up and then moving away from my home state without family. So I’d always been able to look after myself and rely on myself and get by in general.

[00:16:22] So it was just Another part of that, I guess, that I was already used to

[00:16:27] having

[00:16:27] to

[00:16:27] Kate: Yeah. Yeah, you’re very right. Some people do. They are used to that because of life’s pre circumstances. When you had transplant or more intensive chemotherapy, did you struggle to then I guess call on or, or did you need to call on people or allow people to help you, throughout that time period, especially with the kids?

[00:16:47] Theresa: Yeah, it was really difficult because I had gotten to a point where I was looking after them on my own and doing really well with what I was doing, for work. And I had to step away from all of that, so I did have to accept help. My parents helped me a lot during that time, helping out with the girls. I did a lot of things on my own.

[00:17:06] I still was able to do mostly everything on my own.

[00:17:11] I don’t know how

[00:17:12] I managed it. I don’t know how I did, but I did because that was just the situation that I was in at the time. And, I was used to it, but I think it was the year after I finished that everything took its toll. And that was when everything fell apart for me was the year after my stem cell transplant because I went through CHOP chemo, the stem cell transplant, and then radiation.

[00:17:43] It was a whole year in 2017. And during that time, look, I was still trying to keep up with everything the girls were doing. Summer had her biggest year in the industry that year. And I was flying all over the place, even in the middle of

[00:17:59] chemo and everything, coming back and driving up and down the coast to have radiation to do jobs and leaving her at one place with a lady, going back to Lismore to have radiation and then driving back up the old coast to pick her up.

[00:18:14] Like, I was just, it was ridiculous, I was

[00:18:16] trying to

[00:18:17] be superwoman,

[00:18:18] literally.

[00:18:19] Kate: you were also trying to hold on to a part of yourself and, as you say, be in denial and not want to

[00:18:26] Theresa: Yes, I was trying to hold onto what I’d built because it was important to me. But the following year, that all came crashing down because my body just shut down literally, in old ways. Uh, yeah. So it was like trauma, post-trauma type situation. And it took a long time, right till the end of that following year for me to pick

[00:18:50] myself

[00:18:50] back up again.

[00:18:51] Kate: And would you say that it was like come out of that fight mode of like, I need to survive, I need to do this treatment, I need to, survive for my, for my children. And then. You almost were able to take a breath and go, okay, well I made it through that. I made it through the intense treatment and here we are.

[00:19:09] Theresa: Yes, I got through all of that and it was really quite amazing to be able to get through it the way that I did, and I’m really proud of myself for doing that, but I didn’t take the time to heal properly. So, yeah, everything sort of shut down that following year, but by the end of the year I had made up my mind that I didn’t really want to go back to doing what I was doing previously.

[00:19:33] I’d always wanted to manage and be behind the scenes and that’s when I started my business, towards the end of that year, when my body had recovered a little bit, and my mind, of course. So, then I was able to start my mental

[00:19:47] management business,

[00:19:49] Kate: And what did you do to help heal yourself in that year? Obviously acceptance and

[00:19:54] Theresa: I just had to take time off. I had to rest and take time off. I had frozen shoulder, that was one of the main symptoms I had for about nine months because my body was shutting in trying to protect itself. So I literally couldn’t move. One of my arms, I would hold it like it was in a sling on the other side all day because any move, any even slight movement, was like excruciating pain.

[00:20:23] It was really hard for people around me to understand what was going on. I

[00:20:27] was

[00:20:28] really affected.

[00:20:29] Kate: hard to parent.

[00:20:30] Theresa: Yeah, I was really affected by that. And also at the same time, I felt like my whole digestive system was burnt out. So I was vomiting a lot. Every time I ate, I was in terrible pain. Even if I drank water, I was in terrible pain for a couple of hours.

[00:20:46] Kate: Oh, wow.

[00:20:47] Theresa: It’s just I think mainly because I didn’t take the time recover. I didn’t have a choice really at the time because I didn’t have anyone else to, to help look after me. I just sort of

[00:20:58] finished my treatment, went home And then went straight back into everything. Yeah. I continued to do, I mean, I didn’t miss anything.

[00:21:06] I continued to take them everywhere. I just, you

[00:21:10] know, throw my beanie on, crawl to the car sometimes. I, You know, to the supermarket or wherever else I needed to go. And I was just so used to looking after myself and looking after them on my own that I, I think I was a little stubborn in asking for help

[00:21:27] at that point.

[00:21:29] Kate: From an outside perspective, I would say, yeah, you were stubborn, but I, I also, but when, you know, as a parent or even, you know, not even a parent, but just that, that love that you have for somebody else. And it was, you know, that that’s your role that you play within their life. And it’s important the strength of the human spirit , that one has within is incredible.

[00:21:51] And you can do, you can push yourself to the very end, but I, I think that there is always that repercussion, which you did experience in the year after that your body went, you can push me so far, but there’s only so much we can take.

[00:22:06] Theresa: Yeah. I didn’t realize what I’d put myself through and not taken the time properly to recover. Thankfully I did and I spoke to a counselor during that year and that was really helpful and it really got me back on track and, sort of understanding my situation in life and what I needed to do, but how I also needed to heal

[00:22:27] and what I wanted to do as well, not just what I felt like I had to do. So, that was really helpful, I must say. And by the end of that year, I, you know, felt pretty good about what was going to happen next, and I’d, I’ve gotten through the treatment, gotten through the recovery, still not completely recovered because it does take quite a while to get through a stem cell transplant.

[00:22:54] It’s not just the first year. You do feel the effects, you do feel very different. Afterwards, you probably can’t do a lot of the things physically that you once could like flexibility wise and because I was getting a little bit older as well during that time, late 40s then, so I’m like my body’s not going where it needs to be during my, you know, activities and

[00:23:21] things like that. So

[00:23:23] yeah, there

[00:23:23] was an

[00:23:24] adjustment.

[00:23:25] Kate: I think it’s really amazing and I really appreciate you highlighting that in the fact that it does, it’s not just treatments done and over and it’s dusted, that it can take, unfortunately, I know some people don’t want to hear it whilst they’re in the thick of it, but it can take year, if not years, to recover and, um, Dare I say, would you ever be the exact same person you were pre diagnosis to post?

[00:23:50] I don’t think anyone is mentally or physically, yeah, I think you highlighted something really important there that it takes time. It’s not just instant. The regain.

[00:24:02] Theresa: And you have to accept that person’s gone. And I think that was the issue with me at the time was I was so stoic all the way through. Trying to just not be you know, not be a problem, even though I was going through it, I didn’t want it to affect anyone and, at the time, yeah, I wished I’d taken a little more

[00:24:23] Kate: Yeah.

[00:24:23] Theresa: for myself

[00:24:24] during

[00:24:25] Kate: Yeah. Yeah. Because it’s, you’re going through it and you don’t want to be a burden or, you know, it’s a problem as you say, but it’s, interesting if, I mean, well, we’ll get to it in a minute, but you have been that carer, I’m sure your carers and loved ones would be happy to help if you allowed or said, and I think that’s sometimes a dancer role that a patient and a carer do play with one another.

[00:24:47] Theresa: Yes, I was very lucky I had my dad. My parents are interstate, so I did have my transplant down in Tasmania my family is. My dad looked after my girls and he came in every day to the hospital, brought me food and looked after me as well. He was looking after my mum too, because she’s got medical issues.

[00:25:07] So I didn’t want to add to that for him, but he happily and willingly and wonderfully supported me, in particular, mainly my dad. So, um, you know, shout out to dad, he was amazing.

[00:25:23] Kate: How beautiful. It sounds like your, yeah, your children and your family, your parents were really your North Star to keep you pushing through all those really tough moments.

[00:25:33] Theresa: Yeah, it was tough. I got through CHOP chemo pretty well, actually, and I started to recover from that, really quickly, but I knew the doctor said you have to go through transplant, that it’s part of it, and the, possible trial to cure. And that’s the only time they can really do it. So, I was very reluctant to go down there and do that.

[00:25:57] And it changed a lot of things. for me, because I did feel like I was getting back to normal in the six weeks in between. It was a really quick recovery, even though I’d lost my hair and all that sort of thing. But my body went through so much more during the transplant than what it did, during CHOP.

[00:26:15] So, the transplant was the thing that really

[00:26:18] knocked

[00:26:18] Kate: Yeah. And it’s not an easy process. And some people, as you say, you go, well, I’ve done all the chemotherapy and I feel really great or there’s no disease. Why do I have to do it? And it’s almost, I’ve heard some doctors and medical professions explain it as it’s almost like your insurance policy.

[00:26:34] We’ve just got to cash it in just to ensure that there’s no residual disease there and that we’re putting you and your life on the line. in the best foot and the best position. So, but you’re

[00:26:46] right.

[00:26:46] Theresa: Yeah, it was really important to

[00:26:47] do it at that point, definitely.

[00:26:50] Kate: And so you said that that was in 2017. And then if I’m correct, you said that was then basically a year for you to recover. And then you were able to get back on with life, but am I right in saying it wasn’t many years later, then summer became unwell.

[00:27:05] Theresa: Yes, Um, , we sort of had a bit, a big move in 2019, and then 2021 was when she

[00:27:13] was diagnosed. So,

[00:27:15] that was in

[00:27:16] November. So you were settling into life.

[00:27:18] Yeah, it was only a couple of years later.

[00:27:21] Kate: And how are you feeling within yourself where, I mean, you said you’d gotten, you know, that big year of recovery and were you

[00:27:28] building back your business?

[00:27:29] Theresa: I felt like, I’d finally gotten everything where it needed to be, all my ducks in a row with work. And that was progressing and doing really well and going somewhere that I wanted it to be. And I kind of felt like in myself I was ready to get out and about a little bit more as well because I’d been very much honing in on building the business and Looking after the girls and just, you know, focusing on, on all of that and not on external things outside of that.

[00:28:02] So I was at the point, just before she was diagnosed where Yeah, I sort of felt like, I’m ready to kind of get back out and do a few more things outside of all of the, you know, I can start enjoying myself more.

[00:28:15] Um,

[00:28:16] Kate: Have life again.

[00:28:17] Theresa: yeah, yeah. So I was looking forward to that. But obviously, you know, we did start that process and then got hit with Sommers diagnosis in November 2021.

[00:28:29] And that was pretty devastating. Very out of the blue, very much out of the blue. She’d never been

[00:28:35] sick. She’d never had a blood test even in her life. She was 15 and there was, had never been any reason throughout that first 15 and a half years of life to even have a blood test.

[00:28:49] Kate: And were you, like when you go through a diagnosis, I’ve spoken to many people and they say you’re almost heightened post, you know, when, I guess when you’re in that recovery phase and you’ve had that treatment and you’re not probed as much from doctors or you’re, you’re not under the microscope. So anytime you get a cough or a cold or you feel a lump, your anxiety gets heightened.

[00:29:10] Were you. on that point for yourself and your children or, I

[00:29:16] Theresa: before she was diagnosed I felt like everything was going on really well. I wouldn’t have thought anything like that would happen because everyone was happy and healthy, living a really good Healthy, active life, you know, set up pretty well, as you do when you’re an adult and you’re trying to set things up for your kids.

[00:29:33] And yeah, it was a

[00:29:34] huge shock.

[00:29:36] Kate: can’t even, and what was your first sign that you went, Oh, we’re going to take it to the doctor, you know.

[00:29:41] Theresa: basically she rang me out on her lunch break at work. She was working at Boost. She’d been working at Boost for a couple of years when we were in Northern New South Wales. And then when we. Moved up to Queensland. She started working the day after we moved at a different boost. So she had done really

[00:29:57] well

[00:29:57] there.

[00:29:58] Kate: You’ve got your determination obviously and work ethic from what?

[00:30:02] Theresa: yeah, yeah, that’s true. I mean, she, that both my kids worked in the industry from when they were really young, so they’re both really mature and good with adults and, you know, so really good at customer service and all that sort of stuff. But anyway, she was at boost. She was on a lunch break, her Apple Watch was telling her to take time to breathe, like to stop and take time to breathe, because her heart rate was up really high and she was literally sitting on the ground at lunchtime, calm, and her heart rate was 179 and it was telling her that.

[00:30:34] So she rang me. And said that, and I was like, Oh, I didn’t know what to say. And I said, hang on, I’ll ring you back. And so I just kind of Googled the heart rate thing. And then I rang it back and I said, I’m just going to take you to emergency because it’s not meant to be that high. wasn’t really sure because I didn’t know a lot about heart rates and what they should be and stuff like that.

[00:30:58] And she’d always had quite a fast heartbeat as a baby and as a toddler and a child, I’d start like, she

[00:31:04] had a bit more of a, a faster heartbeat. But this was extreme and she was sitting down and she wasn’t doing anything. She felt really, lethargic and lightheaded. So I said, just text your boss, stay there and I’ll come and pick you up.

[00:31:19] And so I took her immediately to Gold Coast Uni Hospital. I’d never been there before. And I took her into the pediatric emergency, and they, took her straight in, did a blood test, and within like 15 minutes told us

[00:31:33] that she had leukemia.

[00:31:34] Kate: Wow. is incredible.

[00:31:36] Theresa: Because they saw all the blasts on the blood

[00:31:40] immediately, and then she had two transfusions straight away.

[00:31:45] So she was dangerously low in, in red blood cells, that’s why her heart

[00:31:50] was so low. Pumping so hard, trying to keep up with,

[00:31:53] with the red blood cells but being so low.

[00:31:56] Kate: And what type of Leukemia, was she diagnosed with?

[00:32:00] Theresa: With

[00:32:00] the a LL, so the, the most

[00:32:03] common

[00:32:03] one? Acute lymphoblastic leukemia.

[00:32:07] Kate: I, I I mean, it is, it is absolutely shocking to hear that, you know, any child has been diagnosed, but then for you to have been through what you’d been through, what was your head doing in that moment? I think that that’s almost a silly question.

[00:32:19] Theresa: I don’t really know. I felt, I don’t know, it’s so hard to put into words what I felt at that time. Um, just protection of her. I, I know my kids had just seen what I went through, a few years prior to that, and they were old enough to understand, so I knew that They sort of understood a little bit at the time, but I don’t think it really sunk in with her until the next day when we were ambulanced up to the Brisbane Children’s Hospital the next day and Jessie ended up coming with us to that as well.

[00:32:55] Um, and she was the one who seemed to understand the gravity of it more so. She was distraught cause she understood and saw what I went through, losing my hair and all that kind of stuff. To them, that’s what they see. They don’t feel, they see that the physical changes and see how much that upsets you and, Yeah, I think that that was what resonated with Jessie. Summer didn’t really, I don’t think Summer really understood

[00:33:24] Kate: Yeah,

[00:33:25] yeah.

[00:33:27] Theresa: through.

[00:33:28] Kate: It could have been almost an out of body experience, right? You, she wasn’t clearly, obviously well either, so she wouldn’t have been feeling the best within herself to then take on board all of that big information. Just, I can imagine your head just would almost shut

[00:33:44] down,

[00:33:45] Theresa: Yeah, didn’t have a lot of information at that point. I had known another young girl that had had leukemia when she was four. who was Summer’s auntie on her dad’s side, and I had remembered that because I knew that family when I was growing up. And she got through it and wrote a little book with her mom, and it was really helpful.

[00:34:07] It was they were part of the Leukemia Foundation in Tasmania. And so I knew only about leukemia because of that story. And, um, but I did know that there were quite a number of kids that she had gone through treatment with that didn’t get through it. And she was one of the few that did. But, now, obviously information that you get straight away, with an ALL diagnosis is that there’s a really high percentage of kids of this age, especially the younger kids that get through and survive and thrive after treatment.

[00:34:47] But it is a really long treatment process compared to what I have had with my blood cancer and this being a blood cancer as well. It’s, chalk and cheese, black and white. It’s, very, very different treatment regime and the way that they do it. I was unaware of how intense the leukemia treatment phases are and how

[00:35:11] prolonged it is.

[00:35:13] Kate: Especially in children, it’s, it is different in adults, but especially in children, it’s much longer.

[00:35:18] Yeah.

[00:35:18] You’re right. And it is, uh, I mean, some are being at that really pivotal age too, 15 and a half, you know, life is for her getting ready to take off clip those wings, into adulthood.

[00:35:31] So I can envision that too would have been, you really hard as well.

[00:35:36] Theresa: Yes. Oh, terrible. Um, she had so many complications and things that happened. She ended up missing her year 10 exams, obviously. I mean, she was about to do her year 10 exams when she was dying, and that was the following week. So, she missed that, wasn’t able to go back to school because she was in hospital for the first month.

[00:35:58] And that’s obviously when we were at the Leukemia Foundation accommodation as well. And, um, and then, you know, she continued to be in hospital a lot after that because, she kept getting really bad infections and other complications and, things that are really rare

[00:36:17] as well. and then she got those multiple times as well, these rare things.

[00:36:24] really quite awful. So she missed all of year 11 as well the following year. And then, the intense part of her treatment is, it’s only meant to be about 8 or 9 months, but has stretched out

[00:36:38] to about 16 months

[00:36:40] Kate: of the complication?

[00:36:41] Theresa: because she kept getting delayed. And then, she had a, know, one particular infection in the middle of it.

[00:36:49] Which delayed her a couple of months and that was in itself even more life threatening than the leukaemia, but We were told all the way through if if she has a relapse at this point There’s nothing we can do because her body wasn’t recovering her body was just in shock from the treatment She’d never had it even antibiotics in her life.

[00:37:09] So not nothing and Yeah, none of it sat well with her, but, the initial treatment that she had, I felt like that got rid of it, and then after that, thank goodness it didn’t return. It was just, they consolidate the treatment after that with each phase, and, which is necessary, and Very well researched and, pretty much the same protocol that they’ve had since Christy when she was four, her auntie back in the seventies.

[00:37:42] So there wasn’t a huge difference in, the protocol of this particular

[00:37:48] phase.

[00:37:49] Kate: And how did you go between that? You’ve been a patient yourself and now you’re watching your daughter and you’ve become a, and you’ve become a carer. I mean, as a mother, you’re a carer anyway, but this is a different level. And then you also have another child that you need to be aware of.

[00:38:04] I can envision you just would have been split in so many ways and pulled in so

[00:38:09] many directions. Yeah, think it’s the most stress I’ve ever had in my life, even with all of my treatment and 20 I didn’t have any of the complications that Summer had even in the first month of her treatment.

[00:38:22] Theresa: was 14, uh, when this happened and she was on her own a lot at home. Legally they’re allowed to be that, eh? Uh, otherwise I would have had to send her down to Hobart, but they had Both been, recently, you know, started at a different school up on the Gold Coast because we were living in northern New South Wales for such a long time.

[00:38:46] So the last thing I would have wanted to do would be to take her out of that after just sending her up there. So that was really difficult to navigate, but because she’d gone through what I had and she’s very mature for her age, she understood that summer was really, really sick and there was nothing I could do about it.

[00:39:05] But I had to be. with Summer and advocate for her most of the time, and we tried to get home as much as we could, but she was sick so much. She had to be in hospital a lot. Some of the time when she was in the Gold Coast Hospital, I could go back and forth a bit more, depending on how she was. when she was up in Brisbane, which is what happened when it’s more complicated, uh, the specialists are all up there, then I couldn’t get home a lot of the time.

[00:39:32] Sorry. It was really, really, difficult to navigate that, I’m not going to lie, it was really difficult and, um, it was hard, I had to leave summer a couple of times. Um, their dad came up and, did stay with Jessie on and off, but, that wasn’t going to happen too much, so. It was mainly all on me trying to sort of organise things and I had my sister who was set up to sort of come up and help a little and she then had a blood clot on her lungs so she couldn’t fly.

[00:40:05] So,

[00:40:06] and my parents were both way into back operations and they were both in terrible pain and in a bit of a bad way so they couldn’t come. So I was sort of in this situation again, um, where it was all on me. Yeah,

[00:40:21] so I was thrown into that and it was, you know, I thought last time was a test. This was something on another level.

[00:40:29] Kate: That was

[00:40:31] a .

[00:40:32]

[00:40:32] Kate: Gosh, we haven’t even touched on you then trying to manage to work like, or even have an income come in, like on top of the stress of trying to make huge decisions. I would envision on the fly, like what to do with Jesse, what to do with summer, where should you be and how’s your health

[00:40:48] and

[00:40:49] Theresa: Yeah. It wasn’t that long after COVID that the first one of the first things that I really struggled with was actually having so many people around me

[00:40:57] in the hospital. Because I work, I built this business at home, working from home and during COVID that was just what everyone had done. And so I hadn’t been around. Too many people in my face kind of talking at me other than, you know, on Zoom or over the phone. , it was a really big struggle for me to get used to that. Um, yeah, it was really odd, I must say. And I value my privacy so much and sleeping in this room and having people come in and out all the time was really odd. And then having to share that with, another child and, you know, Father or mother, or whoever it was there, it’s siblings, that adds another whole element as well. So, that in itself was really difficult, let alone everything else that was going on.

[00:41:44] Kate: Cause that would

[00:41:44] be mentally. I envision a struggle, like

[00:41:47] just to mentally

[00:41:48] kind of,

[00:41:48] as you

[00:41:49] say, share

[00:41:49] Theresa: yeah,

[00:41:50] trying to get the right

[00:41:51] information. A lot of the things that happened with Summer. Were really rare and so they hadn’t seen a lot of as well. so it’s hard to get

[00:41:59] that. I tried to be assertive and then I felt I’m over assertive, if I’m not, then this doesn’t get looked at properly and they end up saying, Yes you were right, it was that. So, there was so many incidences of that, that I, I felt like I really had to be there. I really had to be on top of everything. I had to research everything that was going on. I had to keep my business going. I had to make sure Jesse was okay. I had to

[00:42:25] Kate: the pressure of that.

[00:42:26] Theresa: communicate every, all of this as well to, um, Summer’s dad, to my parents. And in the end, I had to I’m going to cut off everybody that isn’t absolutely necessary for me to speak to right now. And just have a very small kind of bubble and yeah, just of me, Summer, Jessie and mainly my

[00:42:46] parents, my sister that I communicated with, other than work and work had to be dropped right back.

[00:42:53] So. all of that that I had built, had to be scaled back immensely and I had to drop clients. Some of them, it was just like, they caught me on a bad

[00:43:03] day, asked me the wrong questions. I was like, I can’t deal with this.

[00:43:07] I’ve got my child sitting here with her lungs are being squeezed by a fungal infection and bleeding in, internally, I can’t deal with you

[00:43:16] not being able to upload something, you know.

[00:43:19] so it was

[00:43:20] just these.

[00:43:21] Things that I would normally take the time and be really patient with,

[00:43:24] with my clients and with, my business that I really care about and I’m really kind about that I just wasn’t at

[00:43:32] the time So there was some people

[00:43:34] that yeah kind of

[00:43:36] copped it a little bit because I just didn’t have the energy to deal with small things within that.

[00:43:44] Kate: right. You’re right. You’re tether. You know, you, what you were going through and summer was going through, you’re all going through. And I just, I just think the pressure, that’s what I, when I hear the story for you and listen to what you’re saying, the pressure that you must’ve been under in so many

[00:44:02] areas is phenomenal.

[00:44:04] Theresa: Yeah, I’ve never felt anything like it, I must say.

[00:44:07] It was very intense and I’m the type of person that always

[00:44:10] thinks, Oh, did

[00:44:12] I say the wrong thing? Oh, you know, then beat myself up about it. I was like, I can’t do that because this is a really odd situation. I can’t then be beating myself

[00:44:22] up about everything that I’ve said to everybody that day. You know, I like it because you feel like you’re saying the wrong thing

[00:44:28] If you.

[00:44:29] You know,

[00:44:29] too aggressive about anything, but it’s your child’s life. So

[00:44:33] you kind of feel like, well, I have to be it. struggled with that a

[00:44:37] lot because I didn’t want to cross any lines. I don’t think I did, but you, don’t know, you know, and it’s, it’s something that everybody

[00:44:46] faces.

[00:44:47] Different things. and a lot of the parents in the hospital, we only see

[00:44:52] each other out where you get coffee and make toasted sandwiches and things like that. And we’re just like, look at each other

[00:44:58] with wide eyes like I can’t talk to you. I can’t take on what you’re going through, but I understand and I know you’re going through it.

[00:45:06] Kate: Yeah.

[00:45:07] Theresa: look at me the same way. What is

[00:45:08] this?

[00:45:09] This is awful. Yeah. Yeah.

[00:45:12] Kate: There’s an acknowledgement. You go, I get

[00:45:14] it.

[00:45:15] I’m really sorry you’re going through it, but I

[00:45:17] got my stuff and you’ve got

[00:45:19] Theresa: of us really talk

[00:45:20] to each other I must

[00:45:21] say, there’s more talking online in the Facebook group than what there is in person a lot between parents. because we’re all stuck in the rooms. There’s so much time that there’s no time and concept of time is just, is different as well.

[00:45:37] It’s just the most odd

[00:45:39] thing.

[00:45:40] Kate: and I’ve heard sometimes that cancer happens to you when the world continues around you and. you’re staying still and it’s all, the world’s still spinning and you’re just kind of viewing life. You’re not in it at the minute when you’re going through a diagnosis, but um,

[00:45:56] you’re watching it

[00:45:57] spin

[00:45:58] Theresa: Yeah, it was really difficult to see Summer understand all the

[00:46:01] things that she was going through, but her friends were all at school saying all these things on Snapchat that were regular stuff that,

[00:46:09] you know, that, she was kind of missing out on all of those things. And I said to her that that doesn’t matter, you know, you’re going through this, don’t worry about it.

[00:46:19] as it went on and on and on, I just, I felt more and more sorry for her. Being in that situation where she missed out on

[00:46:26] all of that because you learn so much over

[00:46:28] those. Couple of years. at the same time, I also said, you don’t know what could have

[00:46:33] happened that you

[00:46:35] have been saved from that could have happened during those two years.

[00:46:40] So we just don’t, you just don’t look at it like that. It is what it is. And you’ve got to have something to look

[00:46:47] forward to when it’s over. It was just so prolonged for her. It was really hard at some point to

[00:46:53] focus on what was at the end because it just seemed to be further and further away.

[00:46:57] Kate: And it is, you know, that’s so right. She did being 15, 16, 17. Some of those are some of the years that you look forward to in your education and with your friends and, and all of those, there’s some really big pivotal and you’re right. Like, yes, it doesn’t matter, but when you’re in it and you’re watching your friends go

[00:47:16] through

[00:47:16] Theresa: Yeah, it, does matter. It does matter at that age. It really does. And she

[00:47:21] missed a lot, but she got back there for

[00:47:24] year 12

[00:47:24] finally, and, you know, in a very small capacity, obviously, but she did

[00:47:29] get back there and she did graduate, and she did go to formal, and that was the goal all the way through. All of the awful moments was balking about that and getting to that point and getting back to work as well back at BOOST. Her job was held for her, and she’s been promoted

[00:47:48] Kate: was it, that’s

[00:47:49] Theresa: back and she’s still in maintenance.

[00:47:51] Kate: Um,

[00:47:52] Theresa: yet.

[00:47:54] Kate: Wow, that, well, she’s definitely your daughter, obviously, you know, it sounds like for both of you, your work ethic and your purpose outside of your diagnosis has not only of course your children and family have been your North Star, but also a really strong

[00:48:11] force for you as well.

[00:48:13] Theresa: I’m you know, I’m really pleased that it’s ended up with her.

[00:48:18] Kate: Yeah. Oh gosh, I am too for you guys. And it’s, um, You know, to be hit with a diagnosis financially one time around, and as you, you know, you were self made and it’s your own business to then build it back up and it happened again. And also in the peak of COVID and in the entertainment industry wouldn’t have been an easy, an easy juggle and management anyway.

[00:48:43] Um, how are you now? How are you, how are you going now?

[00:48:47] Cause it does take a lot time to financially recover and,

[00:48:51] Theresa: I mean I I took a hit obviously when I

[00:48:53] was sick and then it’s really hard to progress and you’re watching a lot of other people doing things that you, you know, you could have been

[00:49:01] doing that and progressing like that financially as well. But I had a lot of experience. not having a lot and living off, you know, not much.

[00:49:13] Thankfully, so I knew how to do it, but it was really sad to have to, draw up most of my business Throughout this journey with Simon. Look, it didn’t matter because it was, the focus

[00:49:27] was on her and me looking after her and there was no other way around it, and that’s the same for a lot of parents.

[00:49:34] If you’re working full time, which most people are.

[00:49:37] outside of the home, would have to leave that job. And, especially single parents like myself. So, you know, you can’t continue to do what you were doing. It’s, it’s completely impossible. So the struggle is very real financially and it’s part of

[00:49:55] it.

[00:49:56] But the life of the child or the patient is, is, is, important thing and that is always the

[00:50:03] priority. the financial things can come back into focus. Once that’s able to happen, but it is, it’s a huge struggle and we have had to ask for help with the charities and, the foundation has been

[00:50:18] wonderful and.

[00:50:20] But not only that, with support and, do help a lot of people in this situation because

[00:50:26] there’s nothing you can do. It’s just part of it. You’ve thrown into this situation that’s nobody’s

[00:50:32] fault and, it is an adjustment unless you, you know, have a really good, most people don’t have a really good,

[00:50:39] backing financially, um, and you’re able to draw

[00:50:44] upon that.

[00:50:45] Kate: yeah. Or

[00:50:46] income protection and things like that. I think that,

[00:50:48] Theresa: No, I didn’t have

[00:50:49] that. Yeah. I yeah, you’d be surprised. So many people don’t. And it is when I, as the position I sit in and we, I have many conversations about finances. I do have to say my heart does drop as soon as people go, no, I don’t have that. Or I just let it go.

[00:51:05] Kate: And I always tell people I come in contact with, you know, that aren’t diagnosed,

[00:51:09] Theresa: Yeah. protection? You really should think about it. It’s Some people don’t qualify. With my, my history, my medical history, there’s

[00:51:17] a lot of things

[00:51:17] that I can’t get that other people can get

[00:51:20] as in insurance and that type of thing. So

[00:51:23] Kate: very right.

[00:51:24] Theresa: yeah, sometimes you, you just can’t

[00:51:26] get it.

[00:51:27] Kate: No, you’re right. It’s, um, and then, so you’ve said how, um, summer treatment was just, it sounds like it was a really horrific time and dragged out quite a bit. Then were you, did you learn from your experience where you went, no, we really need to recover and take that time?

[00:51:44] Did you use any of the knowledge you’d gained from your experience to, , summers like

[00:51:48] recovery?

[00:51:49] I know she’s still

[00:51:49] in maintenance, so recovering,

[00:51:51] I would say.

[00:51:52] Theresa: Yeah. It was such a different journey

[00:51:54] that I couldn’t really apply a lot of that to her and they’ve got to find their own way and I just,

[00:52:03] you know, obviously wanted her to tell me how she’s feeling and, ,

[00:52:07] you

[00:52:07] know, what, what she needs.

[00:52:09] at the time. So it’s completely different because she’s a different person and it’s a different journey. So, um, you know, there’s that experience working with doctors and knowing some of the tests that need to be done. And like we went for a review yesterday and they talked about the echocardiogram and things like that that, they do at the end of treatment. So they check the heart and I said,

[00:52:33] oh I had that.

[00:52:35] Kate: Yeah. You know

[00:52:36] what that’s about.

[00:52:37] Theresa: Yeah. there’s some things that are similar,

[00:52:40] but

[00:52:40] mostly, you know, even with a lot of the kids that were on the similar timeline. To some, they all have had different side effects and different complications. And so towards the end, when they’re all recovering, they’ve got different medications

[00:52:56] and

[00:52:57] different recovery processes. For her, luckily she’s managed to, go back to fairly normal physically able to do most of the things that she was able to do. you know, she’s grown up, she’s 18, she’s not 15 now. So

[00:53:13] is an adult.

[00:53:14] Kate: now does

[00:53:15] she have to

[00:53:15] transfer into the adult.

[00:53:17] system?

[00:53:17] Theresa: Yeah. She will be transferred once she’s finished. I like to finish them up where they started

[00:53:23] and then I think it’s, you know, they do a couple of reviews with pediatrics and then they go over to adults. Which would be great. I think it’d be good for

[00:53:33] her to interact with, that

[00:53:35] system.

[00:53:36] Kate: Yeah.

[00:53:37] Theresa: the pediatric system.

[00:53:39] Kate: Yeah. Cause now she’s almost, it’s so great when you’re, you’re young and you’re, you know, in, in that, but when you’ve hit the 18 and into adulthood, I envision it would be quite, um, quite,

[00:53:49] different and hard to manage as an 18 year old.

[00:53:53] Theresa: Yeah. She’s doing really well. And

[00:53:55] she’s recovered really well. She’s very resilient. She always has been since she was little.

[00:53:59] Kate: Well, she’s gone through a lot as

[00:54:00] Theresa: So no matter what was going on

[00:54:03] in

[00:54:03] life, , she always got through it and always had a smile on her face. She’s always been my rocket

[00:54:09] and I’ve been hers and ,

[00:54:10] You look for those small things in between.

[00:54:13] On some of the good days and when they are conscious and able to do

[00:54:17] things, then

[00:54:18] you don’t focus on

[00:54:19] talking

[00:54:20] about the diagnosis or the treatment or anything else.

[00:54:24] You focus

[00:54:25] on

[00:54:26] life and doing other things when you can, even if it’s just going to the shops and going in buying milk and then going back to the car and going home.

[00:54:36] You know, yeah, just the normal things, and look, because of what I’ve been through, my kids and myself, we’re very highly aware of the small things the things that matter. and, that’s what means the most to us, just being together and,

[00:54:52] trying to do the right thing and, trying to progress in life as most people do.

[00:54:56] So, and, and when something like this happens, what you

[00:55:00] tend to

[00:55:01] Kate: Yeah. You know, I am, I’m so sorry that, you know, you’ve, you’ve had this blood cancer walk into your life numerous times and that having sat with you, it sounds like it’s as cliche as you found that silver lining in some sense that it is the small things and you’re very right. The small things really can

[00:55:19] Theresa: Yes.

[00:55:20] Kate: big joy in life.

[00:55:21] Um,

[00:55:22] Theresa: Yeah. Yeah. It’s always been nice, when Jessie sort of popped into FaceTime when we’re in the hospital or even at home, she’s got this real funny energy as well. So that really helps sort of

[00:55:36] keep things light and

[00:55:38] during some some of the tough times. she provided that as well, even at a young age, being mature enough to know that that was her role

[00:55:47] And so, yeah, I’m really proud of both of the girls for what they were like during my journey and then what

[00:55:52] they both made like during Summer’s journey is

[00:55:56] really quite incredible.

[00:55:58] Kate: definitely sounds and it’s a real credit to you. I think that, you know, children lead by, um, I’m sorry, learn by example that is led to them. And you have really led an incredible example of how to continue to face adversity , when it’s brought to you and overcome challenges and to push through.

[00:56:16] And, even when you don’t

[00:56:17] have

[00:56:17] Theresa: Yeah.

[00:56:18] Kate: you, um,

[00:56:19] you absolutely have echoed that today.

[00:56:22] Theresa: Yes well sometimes you don’t have a choice.

[00:56:25] Kate: No,

[00:56:26] Theresa: I didn’t really have a choice, but I tried the best I can to be a good example Hopefully and help others, you know, understand the. the journey and um,

[00:56:37] You know, sort of just make people aware that this sort of thing happens

[00:56:41] and, to help out and support the charities and people going

[00:56:47] through it.

[00:56:47] Kate: Yeah. Well, thank you so much. And I’m very conscious of time. I can’t believe an hour has flown by. I don’t know if that’s right on the timer, but it definitely says it is, but, um, I, as always at the near the end of each episode, we do ask the guests to share some golden nuggets. I know you’ve, you have done that so beautifully and effortlessly throughout the episode, but is there anything that you would share with the audience?

[00:57:12] Awkward parts and wisdom on to a carer or a patient or a supporter. Yes, I think it’s good to live in the moment in, you know, while you’re going through it. obviously,

[00:57:25] Theresa: but

[00:57:26] being mindful

[00:57:27] that it’s good to talk about other things and not just what you’re going through at the time. just say that the patient has

[00:57:35] something to look

[00:57:35] forward to. Even if it gets changed, if you’ve got something to look forward to,

[00:57:41] then that really, really helps.

[00:57:43] And,

[00:57:44] yeah,

[00:57:45] focusing on those small things, like I said before, I think is really important and you’re kind of halfway there if you’ve got that. sort of attitude. You know, not, woe is me, or like, it is what it is. You’ve got to

[00:57:56] accept it, and you’ve got to find the, the best way through it, and have something to look forward to at the

[00:58:03] end.

[00:58:03] Kate: absolutely. You’re so right. And that’s such valuable advice to have some purpose and a goal, like a goal in so many things is, is really what helps keep me pushing through when you think, Oh, I don’t want to get up or I don’t want to do it. Or how am I ever going to achieve it? If you have the goal, the focus, the determination.

[00:58:24] You can absolutely try and make it the best for it to happen. So, yeah. Well, thank you so much for your time. I really just wish you and your family the best of health. I hope that, um, life continues to bring some beautiful small things and big things, your way. And I can’t thank you enough for your time and sharing your story.

[00:58:45] And also Summer and Jessie’s stories as well, because, um, they’ve played a big part. in this and

[00:58:51] um, it’s their story too. So thank you so much.

[00:58:54] Theresa: Well, no, it’s absolutely my pleasure. Thanks, Kate.