Unseen strength: Melissa Rodger shares her daughter’s blood cancer battle

[00:02:36] Kate: Welcome to the Talking Blood Cancer Podcast. I’m your host, Kate Aiff. Today, Marianne Scopa speaks with Melissa Rogers about the journey no parent ever expects to face. When Melissa’s daughter, Chloe was just nine years old, she was diagnosed with acute myeloid leukemia. What followed was a whirlwind of hospital stays chemotherapy that began in ICU and the daunting search for a bone marrow donor.

[00:03:02] Kate: In this honest and moving conversation, Melissa takes us through those early days of the shock and uncertainty and shares how her family navigated some incredibly tough treatment decisions when no suitable, unrelated donor could be found. Melissa and her husband both became donors for their daughter, first Melissa, and then later Chloe’s father after a relapse.

[00:03:26] Kate: will hear about the emotional and practical realities of being a donor parent and how the family coped during the most challenging of times, and how Chloe gradually returned to normal life after treatment. Melissa also shares valuable advice for other parents and carers facing a child’s cancer diagnosis.

[00:03:46] Kate: Touching on the importance of hope and staying connected and keeping communication open within families. It is a story of resilience, love, and the strength families can find even in their darkest moments.

[00:03:59] Maryanne: Hello, my name is Maryanne Skarparis, and today for The Talking Blood Cancer Podcast, I welcome Melissa Roger. Who is sharing time with me this afternoon to share her story about her beautiful daughter Chloe, and their family experience with blood cancer.

[00:04:17] Maryanne: Welcome Melissa, and thank you for joining us here this afternoon.

[00:04:20] Melissa: Great, and thanks for having me here, Maryanne.

[00:04:22] Maryanne: To help listeners have an understanding about what’s happened with your life and with your beautiful daughter, it’s probably a good opportunity to start with the beginning, where you were at—at diagnosis, what was happening with Chloe that led her to the doctor in the first place. Are you happy to share?

[00:04:38] Melissa: Yeah, absolutely. So Chloe was a 9-year-old girl. She was in grade four at school. We all had a sinus infection. My husband, son and I, and Chloe. Ours cleared up, Chloe’s didn’t. We had three appointments with the GP before he referred us on to the children’s hospital for some bloods. Upon arriving at hospital, my husband said that the room was inundated with doctors checking Chloe over, and within two hours, she was diagnosed with acute myeloid leukaemia (AML) and taken up to ICU to begin chemotherapy.

[00:05:09] Maryanne: Wow, what a devastating time for you all. So sudden.

[00:05:13] Melissa: It was, it was, I mean, cancer’s big enough as it is and it just happened so quickly, out of nowhere, and there we were sort of left in shock.

[00:05:24] Maryanne: Mel, you mentioned that she went to ICU to commence chemotherapy. Why was she transferred to ICU?

[00:05:31] Melissa: To be quite honest, I’m not really sure. What we were told was that although Chloe was safe, with this type of chemo that she would be having, they always took the caution of err. They put them up into ICU, and a couple of days later, there was another child that was diagnosed as well with AML and was also up there. From that experience, we just thought that that’s just what was the protocol. Obviously in the early stages we didn’t really ask any questions. We went along with what the doctors said.

[00:05:59] Maryanne: Placed your trust in them.

[00:06:00] Melissa: Yeah, absolutely. We were in a lot of shock.

[00:06:03] Maryanne: Absolutely. Now, being nine, how did Chloe herself manage that time? Because nine year olds, they’re no longer little, but they’re not yet teenagers either. But they do understand a lot of what’s happening around them. So how was she in that moment when she was diagnosed with AML?

[00:06:23] Melissa: We actually didn’t tell her for about a month. We were, again, as I said, we were in shock, and we didn’t really know how to broach the subject with her. She knew that she was unwell, and when we were told at the end of round one that Chloe would require the transplant. I said to my husband, “We are going to have to tell her what’s going on.” And rather than use the word ‘cancer’, we told her that her blood had a disease in it and that we needed to give her a new blood factory. Which was the transplant, and we sort of dropped bits and pieces, because as you said, she wasn’t a young child. She didn’t understand fully cancer, but she also did have a little bit of understanding. Therefore, we didn’t want to upset her. We didn’t want to give her any information that may upset her or scare her. We just tried our best to do it in a way that wasn’t going to shock her.

[00:07:18] Maryanne: Fair enough. That would’ve been very difficult to manage you and your hubby, and you have other children, or…?

[00:07:24] Melissa: Yeah. Yeah, we do. Chloe has younger brother, but he was three and a half, so there wasn’t anything that was gonna come from him. But a couple of the kids from school sent some text messages and said, “I heard you’ve got cancer.” It was interesting.

[00:07:36] Maryanne: Yes.

[00:07:37] Melissa: But I guess it was part of what we had to go through. We did the best that we could.

[00:07:42] Maryanne: Absolutely. And I’m sure that would’ve been a challenging time for you and your husband’s relationship as well.  ‘Cause what I know from that intense time, you needed to stay overnight in hospital with Chloe or one of you wanted to, while the other one was with your other child. And the result of that is a lot of emotional exhaustion, isn’t it?

[00:08:03] Melissa: Absolutely. You know, I’d look at night to the couch where my husband used to sit next to me, and I’d go to talk to him, but he wasn’t there. 

[00:08:10] Maryanne: Wow,

[00:08:11] Melissa: It was a very isolating time for us, and obviously we were thrown into this and didn’t know what to expect or what was happening. And it was really hard because we were only seeing each other in hospital for about an hour a day. And during that time we sort of had to put our brave faces on because we had Chloe in the room with us. 

[00:08:30] Maryanne: Yes.

[00:08:30] Melissa: And it really didn’t give us a lot of time to sort of unpack what was actually going on.

[00:08:35] Maryanne: Absolutely. That would’ve been a very difficult time for you both. Speaking, and sharing, and remembering that time, I’m sure is quite surreal for you at the moment.

[00:08:45] Melissa: Yeah, it certainly…, I lose sense of feeling in my legs, and I become a little bit anxious thinking about it. It’s not a great time in my life, and to be honest, there’s a lot of things that I probably don’t remember very well. Because that’s my mind’s way of protecting me from a lot of the things that we’ve seen. 

[00:09:03] Maryanne: You were in automatic pilot. You knew what you had to provide to Chloe, you wanted her to be nurtured as best you could provide. What year are we talking?

[00:09:13] Melissa: So this happened in 2022, so July the 13th. We were just six months out of COVID and feeling like life is coming back to normal because in Melbourne, we had over 200 days of lockdown. 

[00:09:25] Maryanne: Right.

[00:09:25] Melissa: Kids were back at school, life was returning to normal, and then all of a sudden, we had to go back, really into isolation.

[00:09:33] Maryanne: Yeah. You would’ve. And that’s just that extended period of isolation, as you say. Tell me, with Chloe’s condition, you mentioned that she needed a transplant. What did that look like for Chloe?

[00:09:45] Melissa: We were initially told that with acute myeloid leukaemia, a treatment would be done over six months, and she would spend six months in hospital, and we might be lucky to get a day or two out between each round. 

[00:09:56] Maryanne: Right.

[00:09:56] Melissa: At the end of round one, they came to us and said that Chloe had some genetic mutations, which deemed her high risk. 

[00:10:04] Maryanne: Mhmm. 

[00:10:04] Melissa: Therefore, four rounds of chemo would get rid of the leukaemia, but it would keep coming back. 

[00:10:09] Maryanne: Right.

[00:10:09] Melissa:  So, therefore, we’d need the transplant.

[00:10:12] Maryanne: Okay.

[00:10:12] Melissa: They’d already done a search, at this point, we’re advised that there was no matches.

[00:10:17] Maryanne: And: was that both an Australian search as well as an international search?

[00:10:21] Melissa: Yeah.

[00:10:22] Maryanne: Okay. What cultural background is Chloe?

[00:10:25] Melissa: I was born in Australia, my husband was born in Australia. I believe somewhere back in his line, there may be Italian. But that’s way, way back. My family too. It’s been many generations here in Australia.

[00:10:37] Maryanne: So how was that information for you when you received the notification that there weren’t any donor options and the brother wasn’t a match either, I would assume.

[00:10:47] Melissa: We were asked after we were told about the transplant. We were told that Chloe didn’t have a match and that we would need to do testing. It was really hard to sort of comprehend. We had so much going on, and all of a sudden now there’s no matches, so what do we do?

[00:10:59] Maryanne: Yes, would’ve been really emotional time for you, Mel.

[00:11:03] Melissa: Yeah. I really was hanging on that Flynn would be a match. But unfortunately, he wasn’t. And they did make it quite clear to us that if there wasn’t a match, that us as parents would be a half match.

[00:11:15] Maryanne: Okay. That’s called a haploid.

[00:11:18] Melissa: That’s correct. In that sense that it’s usually the father would be the donor.

[00:11:24] Maryanne: Okay.

[00:11:24] Melissa: Because something to do with mothers and pregnancy, they fight against each other.

[00:11:29] Maryanne: Right.

[00:11:29] Melissa: Don’t quote me on that. I’m not medically trained.

[00:11:32] Maryanne: That’s okay. That’s okay. That’s the memory of the conversations that you’ve shared with the healthcare professionals who were looking after Chloe at the time. 

[00:11:40] Melissa: Yeah. We’re both happy to do the donation and they came back and said to me, “Well you and Chloe both have the glandular fever virus in your system and something else, so we’ll match you up more closely and therefore we’ll make you the donor.”

[00:11:53] Maryanne: Okay. How did you feel about that?

[00:11:55] Melissa: Relived. Relieved that it could be done, but also scared because why would we…, wouldn’t have gone down that path the first way if that was the best path. To me it was like the second in line. I was a little bit nervous.

[00:12:06] Maryanne: Of course you are. Well, it’s anything that you’re really not familiar with. Always, there’s an attachment of “what ifs” and anxiety around what will the outcomes look like and be. So that’s sort of a normal response to feeling unsure about what’s ahead.

[00:12:23] Melissa: Yeah.

[00:12:23] Maryanne: So you were the donor.

[00:12:25] Melissa: Yes, I was the first time around. Yes.

[00:12:27] Maryanne: Okay. Do you wanna share what that was like for you and what that was like for Chloe?

[00:12:32] Melissa: Chloe, she didn’t really understand the process. We didn’t talk a lot about it. All she knew is that, she was getting some new blood and that I would be her donor. I was very concerned with donations that they take for bone marrow transplants. I did a little bit of research. You know, you gotta be between 18 and 30. So there was key things that I didn’t… but obviously this is the path that the doctors had chosen. So, again you have to put some faith in them. I did worry that it wouldn’t work. And then when Chloe relapsed, that really hurt me.

[00:13:04] Maryanne: I bet it did, darling. And how long after you were her donor did you learn that she had relapsed?

[00:13:10] Melissa: It was 12 months.

[00:13:12] Maryanne: 12 months, which is a significant time, isn’t it, Melissa? It’s not a short time. And during that 12 months, there would’ve been a lot of hope. How did that 12 months look for Chloe? Was she well over that 12 months or did she struggle with different things?

[00:13:27] Melissa: So Chloe, the first transplant went really well. We were in there for around 50 days, and she was home.

[00:13:33] Maryanne: Oh, okay.

[00:13:33] Melissa: 50 days from the initial transplant. And there wasn’t anything really significant, in terms of what I saw on the cancer ward. Chloe fared really well with the treatment.

[00:13:43] Maryanne: Can I ask just how did you spend time over that 50 days?

[00:13:48] Melissa: Lots of Lego.

[00:13:50] Maryanne: Lots of Lego. Did you play music?

[00:13:52] Melissa: We listened to a lot of music, played Lego, watched a lot of the Simpsons and Bob’s burgers, Jim Carey movies. Chloe watched the Simpsons series seven times over the course of the six months.

[00:14:06] Maryanne: Right. 

[00:14:06] Melissa: She knew every word by heart.

[00:14:09] Maryanne: Oh, so is she quoting things now?

[00:14:11] Melissa: We still watch it. But we talked to the nurses. Chloe had a teacher, art therapist. We made the best of a really shitty situation. You know, you have you to, what else do you do?

[00:14:22] Maryanne: That’s exactly right. I just think it’s nice sharing how you spent time because there are some people who really struggle with knowing exactly what to do with their time. So often hearing how others spend time, it might plant a suggestion with others who are struggling with time.

[00:14:39] Melissa: I always used to get up, have my shower, go down, grab my coffee. Because Chloe was a little bit older, she would be okay with me going for 20-30 minutes, and she had a phone if she needed to call. So I’d go for a walk around the park several times a day, up and down those stairs. You know just— I’ve kept myself busy. Sitting around thinking about things too much isn’t good for me, and Chloe knows that I like my fresh air and my walks, and that’s what I did. 

[00:15:02] Maryanne: Good for you. So after that 12 months, what were the signs that were recognised, that alerted to you that things weren’t going quite well?

[00:15:11] Melissa: There actually wasn’t any signs. 

[00:15:14] Maryanne: Oh.

[00:15:15] Melissa: Chloe went in for her 12 month aspiration, to check everything. And the initial blood test didn’t show anything. It was actually, I’m not sure what exact word is, but there’s a special blood test that sent off to Sydney, and from there they work out the percentage of donor blood. And from the previous aspiration, it was 99.96%. The donor blood went down to 88%, so her old blood had broken through.

[00:15:40] Maryanne: Oh.

[00:15:41] Melissa: And it was showing some small signs of leukaemia. So there was nothing, nothing even hindsight looking at her, there was nothing that I could see to show. It was in its very early stages. Which in some way worked out well because when she went into the second lot of, after relapse, she was very healthy. She was in a much better place, much stronger than she was the first time when she was diagnosed.

[00:16:07] Maryanne: So the second time she went in, who was the donor?

[00:16:10] Melissa: My husband this time.

[00:16:11] Maryanne: Okay, how did he feel about that?

[00:16:13] Melissa: He was glad to do it. He wanted to do it actually the first time. 

[00:16:17] Maryanne: Mhmm.

[00:16:17] Melissa: But again, we’re just following what the doctors said. We also tested his sisters, being Chloe’s aunts. They were actually half matches as well because we needed a backup.

[00:16:27] Maryanne: Right.

[00:16:27] Melissa: So, before I was the donor, then Luke was the backup. Just in case anything happened closer to the transplant, whether it be COVID or something like that. 

[00:16:37] Maryanne: It’s nice having options, isn’t it?

[00:16:38] Melissa: It did, it just, it sits a lot better. If we didn’t have a backup plan, there was nothing. So, they both tested and they were both half matches, which is quite interesting too.

[00:16:48] Maryanne: Yeah. Very interesting. So tell me Melissa, how far are you along, post the second transplant?

[00:16:56] Melissa: So we’re in May, April now.

[00:16:59] Maryanne: Mm.

[00:17:03] Melissa: So we’re 15 months past the second transplant.

[00:17:03] Maryanne: 15 months now.

[00:17:05] Melissa: Yes

[00:17:05] Maryanne: And I’m sure that the initial 12 months, having had the experience of relapsing after the first transplant. I’m sure that initial 12 months was filled with a lot of uncertainty and anxiety and all of those sorts of things.

[00:17:19] Melissa: Yeah, it was, it certainly was, but at the same time, I tried to push it to the side because, you gotta keep living.

[00:17:27] Maryanne: I love that you’ve said that and you’ve said that out loud, but in doing that, where did you place your focus? What did that time look like for you? How did you manage all of your emotions? So the emotions of a 10-year-old, 12-year-old, a husband, yourself, and then the activities of a little busy boy, I would imagine.

[00:17:47] Melissa: Yeah. Yeah. 

[00:17:47] Maryanne: How did you manage all of that?

[00:17:49] Melissa: Lots of walking. Lots of tears.

[00:17:51] Maryanne: Who did you lean on?

[00:17:52] Melissa: No one in particular.

[00:17:53] Maryanne: Right.

[00:17:54] Melissa: We’re a pretty close-knit family and we don’t have a huge amount of outside support. So I just focused on trying to keep my mental health good. Eating well, exercising, crying when I needed to. But also reminding myself that the one thing that has always gotten us through is that you’ve got to have some hope. Nothing lasts forever, the good times or the bad. And it is hard. You can tell yourself these things, but it is always in the back of my mind. And it’s like, you know, having a loaded gun to your head some days thinking, “Is that gonna come and walk back through the door?” But yeah, you have to push it to the side because you’ve gotta keep living. You gotta show your kids that there’s a lot more out there. And we could live for another 50 years, a hundred years. But if you are living in fear, you’re not really living, are you?

[00:18:41] Maryanne: You know, there are easy words to say out loud, but sometimes a little bit of a struggle to commit and live with.

[00:18:48] Melissa: Absolutely.

[00:18:48] Maryanne: With Chloe being now 12, is she 12? 

[00:18:52] Melissa: Yes, she’s 12.

[00:18:53] Maryanne: How is her understanding now, that she’s you know, she’s a little bit older. She’s had two transplants now. She would’ve had exposure to long-term hospital stays. Probably connections with other patients, well you all have. How has that time shaped her into the little preteen that she is today?

[00:19:14] Melissa: She still doesn’t wanna talk about it.

[00:19:19] Maryanne: Okay.

[00:19:19] Melissa: I know she understands the full grasp with cancer and I know that she understands that sometimes not everybody makes it. And I think she just chooses to keep it in the past, at this point. And I’m sure down the track, maybe I’ll be wrong, I don’t know, but maybe she will wanna talk about it. She supports me in that I’m passionate about talking about it now. Because, you know, we’re desperate to funding— to find better cures and better treatments for kids. She understands that what she’s been through is a talking point, and she’s willing to let me talk about it, and she’ll sit beside me. But she’s not ready to have that deep conversation about it at this point.

[00:19:55] Maryanne: Do you think that’s possibly because she doesn’t know where to.. how to find the words to really explain, being so young?

[00:20:03] Melissa: Yeah.

[00:20:04] Maryanne: Or do you think she just wants to cocoon herself?

[00:20:07] Melissa: I think it’s more just, she doesn’t have the words. I don’t think she really will ever fully understand until perhaps she’s an adult, what she’s been through.

[00:20:16]  Maryanne: And with you and your hubby both being haplo donors, have you shared what that experience meant for the two of you? Or what has those conversations looked like? How have you supported each other?

[00:20:28] Melissa: It was never a conversation of… it was, we did it because we’re her parents and we love her. 

[00:20:35] Maryanne: Of course, of course.

[00:20:35] Melissa: And to be honest, we would’ve done it for any family member, or anybody for that fact. You know, everybody deserves a fair chance at life. It was three days of medication and then I was on like a dialysis (apheresis) machine for six hours. So in the grand scheme of life, it was really nothing. But it was a lot, but I’d do it again in a heartbeat.

[00:20:53] Maryanne: And do you have any special messages about that process that you think would be valuable for other families who are in a similar situation to yours?

[00:21:03] Melissa: As I said, what got us through it was just to keep focusing on the positive and we really just let ourselves go with the doctors and let them take charge. Basically did what we were told and we didn’t Google too much. We kept positive, and I think that was really important part of Chloe’s journey and recovery is that we never got angry. We never like, “why us?” or “why Chloe?” We just faced the situation at hand and made the best of what we could do with it.

[00:21:31] Maryanne: Absolutely.

[00:21:32] Melissa: Hospital was like our home. Chloe actually quiet cried the first time we went home. Because she didn’t wanna leave the nurses and everyone that she’d met. So again, yeah, we made the best of it.

[00:21:42] Maryanne: Yeah, that’s good. And did your relationship change? As in the dynamics of your family. When you think of how much from that date in July, your lives, having shared that you all experienced a sinus infection and then having one member of the family having something far more devastating. How has that dynamic you know, in your relationship changed?

[00:22:05] Melissa: Between my husband and I?

[00:22:06] Maryanne: Yeah. 

[00:22:08] Melissa: Look, we’ve been through so much in our life in the 15 years that we’ve been together, and then we add this into it, it’s made us stronger as a couple.

[00:22:16] Maryanne: Yes.

[00:22:16] Melissa: It’s also shown us that we are very, very different people. But that’s not a bad thing. Luke and I balanced each other out, you know, as we’re going through it, it was really tough. And Luke he put on his medical hat, and was in charge of all the doctors. I was in charge of life admin. He kept us laughing. Chloe was just Chloe. And Flynn was…, you know, as a family, the differences between us brought us together rather than pulled us apart.

[00:22:42] Maryanne: That’s actually a blessing, and I’m sure you might feel that in hindsight.

[00:22:46] Melissa: Oh, sometimes he drives me out the world because he is so immature. But I needed that. I needed those laughter, I needed those stupid moments. Where it just made us forget what was going on.

[00:22:56] Maryanne: The seriousness of the event.

[00:22:58] Melissa: Yeah. Chloe and Flynn, even though there’s the six years difference in them, they’re inseparable. They never leave the house without kissing each other and telling each other that they love each other. And, I think that’s really good for little boys to, you know, look up to their big sister and share a lot of love. That’s a reflection on us as parents because our kids, they may not always think that we love them, but they always know that we love them.

[00:23:21] Maryanne: Absolutely. By being present.

[00:23:23] Melissa: Yeah.

[00:23:24] Maryanne: Tell me, Melissa, how has Chloe gone back to school environment?

[00:23:29] Melissa: During her recovery, she had a robot in the classroom, so she was able to be there virtually. As the process went along, we slowly reintroduced her to school, so that she would be going a few hours a day. By the end of grade six, she returned to school full-time. 

[00:23:43] Maryanne: Okay. 

[00:23:44] Melissa: This year she started high school. She’s been on her first camp and she’s been to her first big stage concert, and she’s at school today. It’s a day off, but she’s there volunteering as a helper for the open day.

[00:23:56] Maryanne: Aww.

[00:23:57] Melissa: And next year’s year sevens.

[00:23:58] Maryanne: Wow. She hasn’t had any post-transplant conditions or things or hiccups or?

[00:24:04] Melissa: Last year, just not long after the transplant, she had her… the Barr Epstein virus reactivate. But they got onto it straight away and did some treatment and everything’s been good. She’s making all her own cells now, which is fantastic for 12 months. Yeah, everything’s where it should be.

[00:24:49] Maryanne: How about you and Luke? How have you reentered into your roles and life post the intensity of treatment and transplant? 

[00:24:31] Melissa: It’s definitely been hard because we sort of spent a couple of years really in lockdown while Chloe was going through the transplant and then going back to school. My husband’s still not working. He’s Mr. Mum at the moment, I just work part-time. We are struggling with returning back to normal life.

[00:24:49] Maryanne: Yeah.

[00:24:50] Melissa: To be honest, we just wanna be with the kids. 

[00:24:53] Maryanne: Absolutely.

[00:24:53] Melissa: My husband’s loving taking Flynn to school and dropping Chloe off and doing all that stuff. We used to work 12 hour days, six days a week. Actually, he sold his business a couple of days before Chloe’s diagnosis and was gonna take six months off to be Mr. Mum. 

[00:25:08] Maryanne: Okay

[00:25:09] Melissa: So he’s loving the kids and I’m loving him—watch him be a dad. Because look, he’s not great at the housework, but one thing is that he’s a good dad. He’s a really good dad.

[00:25:19] Maryanne: And you do weigh up what the positive aspects of each relationship are, and I love that you are supporting him. You both seem to be or appear to be supporting each other at the moment. Recognising each other’s vulnerabilities and recognising too what capacity you both have. So there doesn’t appear to be, just in conversation, any edgy ‘you need to go back and earn some money’ or ‘you need to improve to full-time’.

[00:25:46] Melissa: Well, I mean, I’m not saying that he doesn’t need to go back to work. But I mean, look, we’re comfortable. We’ll…, at the moment, all I wanna see is the kids happy and Luke happy and me happy. And everything else will figure itself out. Soon enough, we’ll get there. It’s been a traumatic couple of years, and I think we’re all a bit on edge still. It’s.. still lingers over you. Unfortunately that cloud that’s gonna hang there whether we want to or not. But yeah, just trying to make the most of every day and tell our kids that we love them and not embarrass them too much.

[00:26:16] Maryanne: And that is what a diagnosis does, doesn’t it? It just really hones it down to the simplicity in life and the importance around telling that person that you love them. Recognising too that other things happen within a day, but that importance of a sense of belonging, that importance of knowing that you’re loved is such a nurturing thing for all of us as individuals, isn’t it?

[00:26:39] Melissa: Yep. Absolutely. And it’s the doctor…, and Chloe was sick. I’m like, “She’s like the glue that holds our family together. So we need her.”

[00:26:46] Maryanne: Yeah.

[00:26:46] Melissa: “We’re not gonna give up on her.” And you know, “we need to get her home and better.”

[00:26:51] Maryanne: Absolutely. So with her getting home and better, what different decisions or choices have you made? I know that you’ve placed your faith and belief in the treating team. You have that great acceptance of allowing them to look after Chloe’s physical self. What are the things that you and Luke choose to do to help maintain Chloe’s health and wellbeing? Is there anything specific that you incorporate into your day?

[00:27:18] Melissa: We’re still finding our feet with everything. She’s a 12-year-old girl turning into a teenager. She hasn’t—

[00:27:24] Maryanne: A challenge in itself?

[00:27:26] Melissa: Yep, exactly. So getting her to try and eat the right foods, exercise a little bit. We don’t have to worry about schoolwork ’cause she’s always got her head in the book.

[00:27:35] Maryanne: That’s good.

[00:27:35] Melissa: Yeah. She’s a smart kid and she knows it sometimes too much.

[00:27:39] Maryanne: Because Mel, concentration is something that often kids who’ve had treatment are challenged with, so that’s lucky. Good on Chloe.

[00:27:47] Melissa: Well, she was just diagnosed also because we were worried about her concentration and we had her assessed at the hospital. And she’s actually dyslexic that was never picked up.

[00:27:58] Maryanne: Okay.

[00:27:58] Melissa: Because of COVID and then hospital. So she’s got that on top with that, but she does struggle and we do have to help her with her focus. But she generally wants to do really well and school is important to her. That’s one thing that, which we’re trying to work on, her focus, work on her eating habits, eating good foods, and, getting back into team sport where she can start to socialise more with other kids.

[00:28:22] Maryanne: They’re positive things, aren’t they? 

[00:28:24] Melissa: Yeah

[00:28:24] Maryanne: Because it comes back to that importance around connection and a sense of belonging. And if you look at that transition from childhood to teens, that’s very important for them, isn’t it? You know, they’re no longer the child, not yet the adult. So the hormones are starting to kick in and those kind of considerations in linking them in with where they can grow, their sense of belonging is really important. You’ve given those beautiful foundations of a sense of belonging and that love and importance in a family unit, but letting them spread their wings and make connections elsewhere is equally as important, isn’t it?

[00:28:59] Melissa: It was such a hard time for her especially when she went through the second transplant. The kids were going from grade five to six and they sort of built this foundation of their core group. And because Chloe wasn’t at school and present with them. It was really hard for her to connect in that sense. And then when she did go back to school, they were all talking about boys, and she wasn’t interested in that.

[00:29:21] Maryanne: And look, that’s not abnormal.

[00:29:22] Melissa: No.

[00:29:22] Maryanne: You’ve, got kids who haven’t had an experience with a blood cancer and at that age group, they’re not interested in boys. So I just think that’s an individual thing. So…,

[00:29:33] Melissa: Yeah, yeah. And I like it that she doesn’t try to be like other people just to fit in. She’s still happy just being who she is.

[00:29:38] Maryanne: And nurturing and fostering that confidence in self is really important. When you agreed to participate in this talking blood cancer podcast, we talked about what are some key messages that you feel would be of value to people like yourself who have a child who’s had a blood cancer, and different options for treatment, and needing consideration. Is there anything that you feel is just an absolute gem that you would like to share for other parents who may be facing a similar pathway?

[00:30:08] Melissa: The thing that helped me get through it, is taking care of my mental health. Yeah, it’s a cliche of, you know, “you can’t pour from an empty cup,” but it really is true. There was, again, lots of walking, trying to nourish myself, connect with other parents on the ward. Just to be able to talk about it and get it off my chest. But also reminding myself to keep in mind that your mind is a very powerful tool. So I really tried to talk to people who were positive and had positive stories. I didn’t wanna get bogged down in…,

[00:30:38] Maryanne: Negative stories.

[00:30:40] Melissa: Yeah. That was really important. ‘Cause my husband could always tell when I’ve been looking at things that didn’t serve us. And he would see the rabbit hole that it would take me down. And he’s like, “You gotta stop.” And that’s why I just kept searching for those good hope stories or those people that would inspire me that this is where we’re gonna be.

[00:30:58] Maryanne: Being aware of what was the ‘nurturing thing’, as you say, being aware of that has had the problem solved, really. And it’s beautiful that Luke was, possibly your ‘key person’, to call it, just to say, “now let’s stop looking at that, I can see a change in your personality, that’s not doing you any favors. You need to step away from there or disengage from that and focus on other things.” 

[00:31:23] Melissa: Yeah. He knows me too well. But that’s what you do as husband and wife, you know, in those times it may not be what you want to hear. But I know it was coming from a good place.

[00:31:32] Maryanne: Yes. And did you do the same thing for him? Did he have moments where he was struggling, and were you that balance for each other?

[00:31:41] Melissa: Absolutely. Absolutely. We both called each other out on our bull shit. We had to.

[00:31:46] Maryanne: Yeah.

[00:31:46] Melissa: Because we had Flynn at home, and we had Chloe in hospital, and we needed to give them what they deserved. And that was two people—they didn’t need to see us perfect. We weren’t doing it perfectly. We were just doing our best. And they needed to see that, at times we were struggling with it. 

[00:32:03] Maryanne: Yeah.

[00:32:03] Melissa: But again, they saw us never giving up. And there was that positive attitude. That, “we’re gonna get home”. It’s not a matter of how, but we just will.

[00:32:13] Maryanne: Yeah, good for you. Because it is a struggle. No one can deny that. But it sounds to me that you were able to recognise and support each other through all of the rollercoaster ride of emotions and just be real in the moment. Because I think there’s a lot to be said about allowing ourselves to be real in the moment. Because that would’ve also allowed Chloe to express her emotions at such a young child. I’m sure there were days when she had to endure things that were really unpleasant. And that would’ve been unpleasant as parents to see their difficult times. But allowing all of you to just be real and cry and feel that emotion, I think is really important.

[00:32:54] Melissa: There was times when Chloe, say for instance, she was in ICU and mentally it was too tough for me to be up there. And you know, Luke would happily take one and stay an extra night or two until we were through the thick of it. That made a huge difference.

[00:33:09] Maryanne: Absolutely, and even just knowing that about each other and nurturing and holding that space for each other. I think would’ve been just invaluable.

[00:33:19] Melissa: He’ll always say I won Lott when I met him, I really did.

[00:33:21] Maryanne: Absolutely. Absolutely, Melissa. With the haplo, ’cause it’s a unique procedure. It is an honor and a privilege to be a parent who’s been able to give a gift to a child. Are there any recommendations or any words of advice with regard to how you managed? Did you have any emotional—when you weren’t the successful donor, but your husband was, did you manage that okay? Or were there any reactions that you had to work through or pieces of advice you’d like to give to others?

[00:33:52] Melissa: So when Luke came home and told me that Chloe had relapsed, there was definitely a lot of grief, anger. I felt like my blood wasn’t good enough. But I also had to remind myself that we are dealing with cancer, and not an easy thing. And it wasn’t me. 

[00:34:10] Maryanne: That’s right.

[00:34:10] Melissa: It was just the way things were and I had to just leave that behind. It was tough because the relapse not only gutted me, for the fact that what Chloe was going to have to go through again. It really gutted me because it didn’t work and it was my blood. But yeah, I had to really put that behind me because we had another battle ahead.

[00:34:26] Maryanne: Yes.

[00:34:27] Melissa: I did know that we could possibly be the donor the second time. So I didn’t have time to really get stuck into it, it is what it is and we just need to move forward. Reassessed “This is where Chloe’s at. She’s a lot healthier at this time.” So I saw positives in some lanes.

[00:34:44] Maryanne: Did anyone prompt you during that time, or was there a key clinical person or staff person that used some wise words that helped you shift that mindset? Or was this just who you are as an individual? 

[00:35:02] Melissa: I did a mental health documentary a few years ago where we learned a lot about positive psychology.

[00:33:40] Maryanne: Oh, did you? Which one was that? Would you like to quote that?

[00:35:05] Melissa: It was called How to Thrive.

[00:35:07] Maryanne: How to Thrive.

[00:35:08] Melissa: It’s an Australian documentary about 10 people who faced diversity, and we went through positive psychology skills. And it really has turned my life around. I see things a little bit more differently now. And that was one of the things that we learnt a lot, trying to sort of think a little bit differently in how we can reframe things in a better way. 

[00:35:28] Maryanne: Did you do this prior to all of Chloe’s health issues?

[00:35:32] Melissa: Yeah.

[00:35:32] Maryanne: What led you to wanting to, participate in the How to Thrive documentary? Or was it just something that you were drawn to?

[00:35:40] Melissa: I have two older children from my previous relationship about eight years ago, they went to live with their dad, and we cut off contact.

[00:35:48] Maryanne: Oh, that’s a grief in itself, isn’t it, Mel?

[00:35:50] Melissa: Yeah, so I suffered on some mental health issues with depression and anxiety. And just after Flynn was born, I decided that I really needed to do better. I loved my kids and I really didn’t want them growing up, watching their mother being miserable and having no joy in life. And I wanted to change myself.

[00:36:07] Maryanne: Yeah, that was almost like an epiphany for you.

[00:36:10] Melissa: It happened and I felt a real huge change in myself. And then when Chloe was diagnosed, I leaned on a lot of the people from the documentary. I leaned on a lot of the tools that I had learnt. I think if it wasn’t for that, I’m not sure mentally, I would’ve been in the same place that I was when we were going through treatment.

[00:36:25] Maryanne: Good for you. You know, I think life does often present us with things where we can either choose to learn from them and do better. Or we spiral down similar patterns, and same patterns, and things don’t improve. So I really admire that you’ve had the resilience and the strength and the ability to embrace some learnings and make some changes in your life that obviously have helped you develop skills and tools to create that nurturing environment. Especially with the challenges that Chloe has now faced. But how lucky Chloe and Flynn are that you are a different person.

[00:37:03] Melissa: They’ve taught me a lot and you know, we’ve all had health issues, been clean, we’ve had, and Chloe’s issues. You know like it’s constantly with kids growing, and learning and going through different stages from toddlers to teenagers. You either learn from things or things just keep staying the same. It’s the definition of insanity.

[00:37:22] Maryanne: Yeah, but you took that challenge. You took that challenge, Melissa, and good on you. Yeah, good on you, love. That’s really enlightening and certainly something for others. Because, no one really truly knows what a person’s challenging environment is. But it’s up to an individual to make personal choices about how they change something they’re not really comfortable or happy with in their life. I think you’ve made some lovely changes. So well done, well done. So, ‘How to Thrive’, a documentary. Is there anything else that you think would be of interest or value to share? Maybe Chloe, when she’s a young adult might want to come into this Talking Blood cancer podcast and give insights to, who she was a little 9-year-old or, what choices that she’s made over time and who she is as a young adult.

[00:38:12] Melissa: I definitely think Chloe would be a great person to talk to about navigating life in the hospital. 

[00:38:17] Maryanne: Yeah. Navigating life. 

[00:38:19] Melissa: She did it pretty well.

[00:38:20] Maryanne: But that’s thanks to the guidance of yourself and Luke. So well done. I’d like to thank you for joining us for Talking Blood Cancer. Melissa, I know that conversations like this always do bring up different bubbles of emotion. Thank you from all of the community here.