[00:02:36] Kate: Hello and welcome to Talking Blood Cancer Podcast. I am your host, Kate Arkadieff, and today I have something really special to share with you. In this episode, my wonderful colleague, Maryanne Skarparis, sits down with an incredible family, Prue Meier and her brave 10-year-old son Chase. Their story is one that will touch your heart and remind you of the remarkable resilience that lives within all of us.<\/p>\n
[00:03:01] Kate: When Chase was just four years old, he was diagnosed with acute myeloid leukemia. Today, six years later, he\u2019s a vibrant 10-year-old with some pretty sweet memories from treatment, including the special room where he got some cookies. You\u2019ll love hearing Chase\u2019s perspective on his journey and how he\u2019s thriving at school today.<\/p>\n
[00:03:22] Kate: Prue shares with such honesty and grace, what it was like to notice those first warning signs and navigating the world of a diagnosis and treatment, and ultimately becoming Chase\u2019s bone marrow donor, an experience that is filled with both fear and profound love. She also opens up about the incredible support that they receive from their medical team and the Leukemia Foundation and how their community rallied around them. What makes this conversation so valuable is that Prue doesn\u2019t just share their story. She offers real practical advice for other families who are walking this path. Learning to accept help when it\u2019s offered, and to the importance of capturing those precious moments along the way.<\/p>\n
[00:04:09] Kate: This story is of hope, healing, and the unbreakable bond between mother and her son. So let\u2019s listen to the beautiful conversation with Maryanne, Prue and Chase.<\/p>\n
[00:04:21]\u00a0 Maryanne: Good morning. Welcome to Talking Blood Cancer. My name\u2019s Maryanne Skarparis, and I feel very excited because here with me this morning, I have Master Chase Meier and his mum, Prue. Hello, Chase. Tell me, Chase, how old are you, darling?<\/p>\n
[00:04:38] Chase: Ten.<\/p>\n
[00:04:39] Maryanne: Ten. So you\u2019ve just gone on Christmas holidays.<\/p>\n
[00:04:43] Chase: Yeah.<\/p>\n
[00:04:43] Maryanne: And I believe that you are currently in at Mummy\u2019s work this morning so that you could participate in the Talking Blood Cancer podcast.<\/p>\n
[00:04:53] Chase: Yeah.<\/p>\n
[00:04:54] Maryanne: Thank you. Now, I have some questions to ask you. Are you happy to answer in a big voice?\u00a0<\/p>\n
[00:05:02] Chase: Maybe.\u00a0<\/p>\n
[00:05:02] Maryanne: Maybe. Oh that\u2019s okay. Tell me, Chase, what grade are you in?<\/p>\n
[00:05:07] Chase: Five.<\/p>\n
[00:05:08] Maryanne: Grade 5. And do you like school?<\/p>\n
[00:05:12]Chase: Yeah.\u00a0<\/p>\n
[00:05:12] Prue: Can you elaborate?\u00a0<\/p>\n
[00:05:14]Chase: What does that mean?\u00a0<\/p>\n
[00:05:16] Prue: Well, what, yes. You like school? What do you like about school?\u00a0<\/p>\n
[00:05:20] Chase: Recess.<\/p>\n
[00:05:21] Prue: Recess.<\/p>\n
[00:05:21] Maryanne: Recess. So, you, you\u2019re like the Hungry Caterpillar. Do you remember that book? Are you like the Hungry Caterpillar?<\/p>\n
[00:05:28] Chase: No.\u00a0<\/p>\n
[00:05:28] Prue: No<\/p>\n
[00:05:29] Maryanne: Now, I don\u2019t know whether you remember, Chase, I\u2019m from Brisbane. Do you remember coming to Brisbane years ago?<\/p>\n
[00:05:36] Chase: Yeah.<\/p>\n
[00:05:37] Maryanne: What was Brisbane like for you?<\/p>\n
[00:05:39] Chase: Cookie.<\/p>\n
[00:05:40] Maryanne: Cookie. What does cookie mean?<\/p>\n
[00:05:43] Chase: Special room. I got cookie every day I went into special room.<\/p>\n
[00:05:48] Maryanne: Oh, you went to a special room and you got a cookie. Can you tell me a bit more about that special room?<\/p>\n
[00:05:54] Chase: I got to choose flavour, and then they put mask on me and I smelled the flavour and it put me to sleep.<\/p>\n
[00:06:02] Maryanne: Oh, how lucky. Was that a nice experience or was that a scary experience?<\/p>\n
[00:06:08] Chase: I say good.<\/p>\n
[00:06:10] Maryanne: Oh, it was a good experience. Did you guess the right flavour all the time?\u00a0<\/p>\n
[00:06:17] Chase: No.<\/p>\n
[00:06:18] Maryanne: No. So, was that the nursing staff who gave you the cookie? Who gave you the cookie?<\/p>\n
[00:06:23] Chase: Mummy and Daddy.<\/p>\n
[00:06:25] Maryanne: Oh, Mummy and Daddy gave you a cookie. And what else do you remember about being in Brisbane?<\/p>\n
[00:06:32] Chase: Christmas.\u00a0<\/p>\n
[00:06:33] Maryanne: Christmas, and what was so special about Christmas?<\/p>\n
[00:06:36] Chase: I got presents.<\/p>\n
[00:06:37] Maryanne: You got lots of presents. You were spoiled. And tell me, Chase, because how old were you when you came to Brisbane?\u00a0<\/p>\n
[00:06:45] Chase: Four?\u00a0<\/p>\n
[00:06:46] Maryanne: Four. That\u2019s a lot. And you are now?\u00a0\u00a0<\/p>\n
[00:06:49] Chase: Ten.<\/p>\n
[00:06:50] Maryanne: Ten. So that was six years ago. That\u2019s a long time ago. And special memories of Christmas and presents. Is that all that you remember about being in Brisbane?\u00a0<\/p>\n
[00:07:01] Prue: Remember when you started when you\u2019d get out of the hospital?<\/p>\n
[00:07:03] Chase: Caf\u00e9 63?\u00a0<\/p>\n
[00:07:05] Prue: No, that\u2019s when we\u2019d go visit after we moved back.\u00a0<\/p>\n
[00:07:09] Chase: Oh, where I\u2019m needing my shirt back?<\/p>\n
[00:07:10] Maryanne: Tell me, Chase. When you finished treatment, what special thing did you do?\u00a0<\/p>\n
[00:07:16] Chase: Ring the bell.\u00a0<\/p>\n
[00:07:18] Maryanne: You ring the bell. So tell me, Chase, what is school like for you now? Do you play sport?\u00a0<\/p>\n
[00:07:25] Chase: Soccer.<\/p>\n
[00:07:26] Maryanne: Soccer. So you\u2019re a soccer fan.\u00a0<\/p>\n
[00:07:29] Chase: Soccer and futsal.\u00a0<\/p>\n
[00:07:32] Maryanne: Soccer and futsal. And are you a fast runner? No. And do you like school? Yeah. What do you like about school?\u00a0<\/p>\n
[00:07:41] Chase: Recess.\u00a0<\/p>\n
[00:07:41] Maryanne: That\u2019s right, recess. And do you have lots and lots of friends? You do. That\u2019s lovely, Chase. Is there anything that you would like to share in this podcast or in this space that you think is kind of special for other little kids just like you.\u00a0<\/p>\n
[00:07:59] Chase: I don\u2019t know.<\/p>\n
[00:08:01]\u00a0 Maryanne: You don\u2019t know?<\/p>\n
[00:08:01] Chase: Cookies. Cookies are the best.<\/p>\n
[00:08:05]\u00a0 Maryanne: Cookies are the best and have a Merry Christmas?\u00a0<\/p>\n
[00:08:07] Chase: Have a Merry Christmas and New Year.<\/p>\n
[00:08:10] Maryanne: Lovely, Chase. Thank you for joining us this morning. You\u2019re very special and oh my goodness, you\u2019ve grown so tall. Maybe there might be something for you to nibble on.<\/p>\n
[00:08:20] Chase: Yum yum yum yum.<\/p>\n
[00:08:22] Prue: He\u2019s a child of a few words when he gets on these things, but he doesn\u2019t shut up at home.<\/p>\n
[00:08:27] Maryanne: Isn\u2019t that always the way, Prue? I think that\u2019s just boys in general, so it\u2019s okay. It\u2019s nice to hear their little voices, and it\u2019s certainly lovely to see him. His hair\u2019s a bit darker than what it was.<\/p>\n
[00:08:41] Prue: Yeah, it was sort of more my, his dad\u2019s shade, my husband\u2019s shade, before he had his treatment and then it came back closer to my shade afterwards.<\/p>\n
[00:08:48] Maryanne: That\u2019s right, isn\u2019t it funny? But you can still see his little cheeky face. I remember that little face at ESA Village. Marie says to say hello.<\/p>\n
[00:08:58] Prue: How lovely.\u00a0<\/p>\n
[00:08:59] Maryanne: And to thank you, the story that you\u2019ve shared, which you\u2019ve done so generously with the Leukaemia Foundation shared your family\u2019s story. So personally, I\u2019d like to thank you on behalf of the Foundation, Prue, because you\u2019ve been very open and warm in sharing what\u2019s happened with you over the years. And I\u2019m sure it hasn\u2019t been easy, but that story that\u2019s reflected in the calendar.<\/p>\n
[00:09:20] Prue: That\u2019s the least that I can do and it does get easier each time you retell your story.<\/p>\n
[00:09:25] Maryanne: So we might just start from the very beginning, Prue, if that\u2019s all right, because often in these conversations, it\u2019s very difficult to know where to start. And I\u2019m sure you\u2019ve given a lot of thought around what it is that you\u2019re wanting to share, but I often think when you\u2019re engrossed in a conversation, you\u2019ll be thinking of things that you haven\u2019t thought of. So let\u2019s just start from the very beginning, if that\u2019s okay with you.\u00a0<\/p>\n
[00:09:49] Prue: Yeah, absolutely.\u00a0<\/p>\n
[00:09:50] Maryanne: So where abouts do you live, Prue, and where were you when Chase was first diagnosed?<\/p>\n
[00:09:55] Prue: Yeah, so we live in Townsville in North Queensland and we were living here at the time that he was diagnosed. Haven\u2019t moved on from town here, but yeah, we like it up here.<\/p>\n
[00:10:04] Maryanne: Lovely. And what was happening with Chase that identified that he needed to get some medical treatment? I know it\u2019s a lot of years ago.<\/p>\n
[00:10:11] Prue: Oh no, it\u2019s the first question that people ask, actually. They go, what were his symptoms? But for us, he had a temperature that went on for a couple of days, quite high. It was sort of 39, 40 degrees. And Panadol and Nurofen were only helping so much. It was breaking through before that next dose could be given. So I took him to the GP who said that it was just influenza and he could have the temperatures for up to seven days. And just come back in a couple of days if he didn\u2019t improve. Didn\u2019t improve. We went back in a couple of days at which point he referred us through to the paediatrician.<\/p>\n
I remember him, he said, \u201cOh, look, I still think it\u2019s the flu, but I can see that you\u2019re, anxious about it, so we\u2019ll refer you through to the paediatrician.\u201d So we saw the paediatrician who had the same verdict, but did run some swabs or did send us to pathology to get some swabs just to confirm what strain of the flu it might be. Because we saw the paediatrician external to the hospital, we went to Sullivan Nicolaides or something. And I remember it was a Friday and they said, \u201cOh, we won\u2019t have the results \u2018til Monday,\u201d because where we live, everything gets sent down to Brisbane to get tested and then they get the results back.<\/p>\n
And at that point I was glad we were getting some tests and we\u2019d get some confirmation, but I think our paediatrician actually rang on the Saturday, he touched base because he just wanted to see how Chase was doing. And I think both the GP and the paediatrician could see I was really stressing about it because it had been going on for a couple of days and I\u2019d sort of.\u00a0<\/p>\n
[00:11:48] Maryanne: And no other signs, just the temperature?\u00a0<\/p>\n
[00:11:51] Prue: Yeah, and, I think in my gut, I was like, no, something\u2019s not right, because it was too consistent and, that you weren\u2019t getting that relief from the Nurofen and Panadol. And I think at the time, you know, I was home, I had a four-month-old, my husband was working away, so I was highly strung. The Sunday my husband was home at this point and the Sunday, again, the fever was really high and it was just, December and so it\u2019s quite hot up here at that time of year and we thought I\u2019ll put him in the pool and see if that perks him up a bit and helps cool down his body.<\/p>\n
And it was when we did that, I noticed a little red dot on his hip. So probably no larger than a pea and that was new and I hadn\u2019t seen anything like it before it was, sort of all broken blood vessels under the skin, not a bruise, but bright red under the skin there. And I took a picture and sent it to a friend of mine.<\/p>\n
Our kids were in daycare together and she happened to be a GP as well. Cause they\u2019re in daycare. She knew that he\u2019d been off sick all week and yeah, she just said, \u201cOh, I\u2019d take him in to get checked anyway.\u201d So that was a Sunday evening. It was about 6 PM and dinner was half prepared on the stove and loaded them into the car and off we went.\u00a0<\/p>\n
And I remember at the time, like putting him in, and I think this had only started that day, but he\u2019d been complaining that it hurt when he sat down, like he was uncomfortable sitting, he preferred to lay. And now, we know that was, those larger bones in your body where your hip and things are and that was a chock full of leukaemia cells. So it was causing him discomfort to sit at that point. So yeah, so that began our whirlwind. We went to the emergency department at the private hospital here and they still thought that it was potentially some sort of viral infection. But they did do the swabs onsite. And so the onsite lab could test for influenza and get those results quickly.<\/p>\n
And when they came back negative, they thought, \u201cOh, we need to investigate further here\u201d and they ran some bloods.\u00a0 And I think when they got those results back, they pulled us into the room and said, \u201cOh, something\u2019s not quite right. We\u2019re going to send you over to the public emergency department and they\u2019ll run some more tests.\u201d And I think I said to the ED doctor at that time, as I said, \u201cOh, what could cause it? The blood counts to be off.\u201d And he said, \u201cOh, it could still be a viral infection. We just got to figure out which one.\u201d And I remember saying to him at the time, \u201cOh, or it could be leukaemia.\u201d And he said, \u201cThat would be worst case.\u201d But I think at that point he must have known. And was\u2026<\/p>\n
[00:14:31] Maryanne: So what made you say, or it could be leukaemia, what was it about that moment? I mean, I always trust mother\u2019s instinct.<\/p>\n
[00:14:39] Prue: Yeah. I\u2019m not sure. I think, you know, I had enough knowledge to know that, a high white blood cell count is linked to leukaemia. So I don\u2019t know if it was a combination of those things that my head put two and two together.<\/p>\n
[00:14:55] Maryanne: That instinctive knowledge, a lot of people don\u2019t know medical terminology, let alone what attributes to leukaemia and blood counts and that sort of thing. So. You\u2019re quite astute really, in identifying that could have been a possibility for Chase. You would\u2019ve felt very vulnerable. With the newborn, relatively, a newborn four month old. So in many ways, Prue, you were postpartum your whole lines would still have been, were you breastfeeding?<\/p>\n
[00:15:26] Prue: Yeah so I was exclusively breastfeeding. And I remember, and before we got transferred to the public hospital, I\u2019d given Jacob, our youngest, his nighttime feed. And thankfully he was a really good sleeper. And at that point was only having one feed during the night. But then my husband was gonna take him and put him home, like put him to bed at home.<\/p>\n
[00:14:03] And it was as that we\u2019re about to leave that the doctor came and said, \u201cOh, can we just have a chat?\u201d And, you twig and you go, \u201cOh, something\u2019s not right. They\u2019ve found something now,\u201d but you\u2019re just waiting for the final verdict. Which didn\u2019t come until later that evening. Once we got to the public hospital and now, at that point, Brisbane was already pulling the strings and guiding them in what to do and when to do it. So\u2026<\/p>\n
[00:16:12] Maryanne: Were you airlifted down or were you brought down by commercial flights or?<\/p>\n
[00:16:16] Prue: So they airlifted Chase. My husband went with him because they wouldn\u2019t let me take Jacob and because he was breastfeeding. He fed a lot more during the day than he did at night. So my Mum and myself and baby Jacob, we jumped on a commercial flight early the Monday morning and we met them in Brisbane.<\/p>\n
[00:16:37] Maryanne: What a terrible night you would\u2019ve had, Prue.<\/p>\n
[00:16:40] Prue: It was a bit of a whirlwind and there\u2019s things that I don\u2019t remember from that night, but then when I got his discharge papers many, many months later and read them, I was like, oh, that happened there too, and I can\u2019t remember it because he has a reaction to one of the antibiotic IV drugs called vancomycin. And the reaction that they get, they refer to it as \u201cred man syndrome\u201d. It\u2019s not necessarily a allergy, but I guess more an intolerance. And if they push the drug through the IV too quick, there\u2019s this topical reaction to the skin and you go, they go bright red like all over. And it\u2019s like a bad rash or something.<\/p>\n
And I remember it happening in Brisbane, I think on day two or something. And they said, oh, and they just slowed the drip down and it\u2019s fine. But when I got the discharge papers from the Townsville Hospital, it had on the notes there that he had this reaction there that night, and I can\u2019t even remember him having it. Like even to this day, I don\u2019t remember it happening.<\/p>\n
[00:17:45] Maryanne: Oh, goodness me, darling. So you came to Brisbane, and you stayed how long in Brisbane?\u00a0<\/p>\n
[00:17:52] Prue: So we arrived in Brisbane on the 17th of December in 2018, and we left on the 11th of June 2019.<\/p>\n
[00:18:04] Maryanne: Wow, that\u2019s a long time that you were in Brisbane, long time. So what are your, I know I asked Chase, what are your memories of that time, and how did you manage? Did you and your husband both come down to Brisbane, or did your husband remain working? How was that time?<\/p>\n
[00:18:21] Prue: Initially, we were all there and as I said, my mum came with us. She had recently retired. So that was a real blessing, especially with Jacob. So we were all there through his, the initial stages of his treatment and then post-transplant, once he got released from the hospital my husband started to go back to work a bit and he would fly up and back outside the weekends. So he\u2019d come down for the weekend or sometimes he\u2019d go for two weeks and then come down. But mum stayed with us for the majority of it as well.<\/p>\n
[00:18:54] Maryanne: So you mentioned that Chase had a transplant.\u00a0<\/p>\n
[00:18:58] Prue: Yep.<\/p>\n
[00:18:58] Maryanne: Who was his donor?<\/p>\n
[00:18:59] Prue: I was.<\/p>\n
[00:19:00] Maryanne: You were. Wow. So can you tell us a little bit about that experience and what led to that decision?<\/p>\n
[00:19:07] Prue: Yep. I think initially when we found out he\u2019d need a transplant they tested parents just as, a matter of course, I think. But they did say to us at the time that the parents are usually only a 50 percent match. And, that being the 50 percent of the markers that the child gets direct from you.<\/p>\n
Jacob being a baby was too young to test, like he wouldn\u2019t have been able to produce enough for them to harvest for Chase. So they didn\u2019t even bother testing him from a transplant match perspective. So we had initially been told that, it\u2019ll be a third party from the registers and it\u2019d take a few weeks to identify they\u2019ve got a match and how good that match is. And I remember the transplant team coming into the room one day and we\u2019d been waiting and waiting, anxious to find out if you\u2019ve got a match, because if you don\u2019t have a match, then it\u2019s a far different story. And they came in and they seemed a bit like giddy, a bit excited. And even the nurses must\u2019ve had some knowledge because they were all a bit like, yeah, excited.<\/p>\n
And I said, \u201cHave we got a match?\u201d And they said, \u201cYeah.\u201d And I said, \u201cWho is it?\u201d And they said, \u201cYou\u201d. Sorry, what? And they said, \u201cWe couldn\u2019t find a 10 out of 10 match on the register.\u201d Apparently one of the markers that Chase has, one of the particular genes that they look for that he has was quite rare. And the best they could get, I think, was a nine out of 10, which still would have been good. But that particular marker he got from me and then the markers that he got from my husband or the genes that he got from my husband that they look for were really common, White European. And so I just happened to carry the same common genes. So I ended up being a 10 out of 10 match. A 50 percent was an exact match because it\u2019s what he received from me. And the 5 percent were, yeah, shared ones that my husband and I both happened to carry. So they were really excited cause it\u2019s quite rare that you\u2019ll get a parent that\u2019s such a strong match.<\/p>\n
[00:21:18] Maryanne: Mmm, and what a gift, really, all that turmoil. And as a mum, because we are all lions with a cub, a gift for you to be able to offer that for Chase.<\/p>\n
[00:21:30] Prue: Yeah, it was tough to process at the time for me because you\u2019re faced with the reality that you can save your child. And the question of whether I did it or not was, a no brainer, of course you\u2019re going to do it. But then, it\u2019s quite daunting to think that if it didn\u2019t work, you\u2019re also the reason that they might not be there if, yeah, so it was really that, it has to work because I don\u2019t know that you could live with the alternative.<\/p>\n
[00:22:00] Maryanne: It\u2019s interesting that you had that perspective, Prue, because my understanding is it\u2019s never really about the donor, it\u2019s more about the host, so the patient either not accepting the cells.\u00a0<\/p>\n
[00:22:14] Prue: Yeah.<\/p>\n
[00:22:14] Maryanne: So it\u2019s, cause I know that that is a reality that many donors face. They take responsibility for an outcome, but it\u2019s actually not the case, my understanding is it\u2019s more the patient rejecting those donor cells. But I\u2019m so pleased that, you know, and this is why we\u2019re together today is to celebrate what has happened and where you are now. All of that time back then, as I\u2019m sure you\u2019re reflecting now, feels like it was yesterday.<\/p>\n
[00:22:43] Prue: Yeah. It\u2019s funny because we just had his six-year anniversary of his diagnosis last week and..<\/p>\n
[00:22:51] Maryanne: On 17th of December, yeah.<\/p>\n
[00:22:53] Prue: Yeah well, I think the 16th was the day we went to the hospital. So we treat that as the anniversary.<\/p>\n
[00:22:58] Maryanne: Okay.\u00a0<\/p>\n
[00:22:59] Prue: The official on-paper diagnosis came on the 18th. The verbal diagnosis came at some point between the two. So, it\u2019s a, it\u2019s always an evolving beast, I think from diagnosis to, you know, your treatment. It\u2019s forever changing from one day to the next.<\/p>\n
[00:23:13] Maryanne: Of course. And Christmas too, in the mix.<\/p>\n
[00:23:16] Prue: Oh, I remember when they initially said, \u201cOh, we\u2019re going to send you for more testing. You\u2019ll probably be in the hospital for a couple of weeks.\u201d I was like, we can\u2019t do that it\u2019s Christmas next week. Like, no, we don\u2019t have time. And at that point, I think I was still oblivious to the seriousness of it. But no, it\u2019s, this anniversary for some reason sat really heavy with me. I was thinking about it from the moment I woke up that day. But then in contrast last year, which was five years and is quite a big milestone in your journey I didn\u2019t realise what day it was until about 2pm in the afternoon. So it\u2019s\u2026<\/p>\n
[00:23:51] Maryanne: Oh wow..<\/p>\n
[00:23:51] Prue: You know, some days it sits heavier than others and there\u2019s no rhyme or reason as to when it\u2019s sort of, the trauma response and the emotions rise up.<\/p>\n
[00:24:02] Maryanne: It\u2019s very true really, you know, some days are harder than others and you don\u2019t know rhyme or reason, you\u2019re quite right. What are the triggers that make one year different to the next or one situation or how we feel about things different from one year to the next? Where were you at five years? Are you someone who celebrates that event each year or do you do something special to acknowledge it or it is just a day, is there any ritual?<\/p>\n
[00:24:30] Prue: Well, we always do something on the anniversary of his transplant or around that, and they refer to that as the rebirth. Cause really they gaining a new set of DNA essentially. So..<\/p>\n
[00:24:46] Maryanne: What date was his transplant?<\/p>\n
[00:24:47] Prue: The 6th of March 2019. Yeah.<\/p>\n
[00:24:50] Maryanne: 6th of March. Mm-hmm.<\/p>\n
[00:24:51] Prue: I keep telling him not to commit any serious crimes and leave blood at the scene because they\u2019ll pin it on me. We always do something for that one. And it\u2019s normally, you know, it\u2019ll be dinner and we\u2019ll do a fun activity as a family, go bowling or to arcades or something. Nothing so huge or don\u2019t, it\u2019s part of his story and his journey, but it doesn\u2019t need to be the only part to his story. So I think you see, sometimes people will fixate on that really traumatic big event and that becomes the only thing about them and, you know, we want Chase to grow up and be confident in other ways. And yeah, not for that to be the main part of his story, even though it is a really huge and significant event in his life. So..<\/p>\n
[00:25:39] Maryanne: Do you think the beauty of being so young, all three, four when he was initially diagnosed, the beauty of life and memory has protected him from maybe the harder memories that he would\u2019ve endured during that time back then?<\/p>\n
[00:25:56] Prue: Yeah, definitely. He only remembers positive things about that journey. Like, you heard every time he came out of what they\u2019d call, the special room, because he was four, so we had to really dumb things down in language.<\/p>\n
[00:26:06] Maryanne: Absolutely. Plus also the imagery, you know, creating a place of fascination, a place of..<\/p>\n
[00:26:14]\u00a0 Prue: Yeah, and you know, it was a special room in a sense because they had superheroes strung up all around the theatre and tried to make it not so scary for the kids that are going in. But yeah, every time he had a bone marrow aspirate or, spinal tap or anything like that and had to go in the room we\u2019d get him this same cookie that had Smarties in it from the cafe under the hospital. And that\u2019d be the first thing he\u2019d have when he\u2019d wake up because they have to fast. So they\u2019re always ravenous by the time they actually come out of the theatre and wake up. Yeah, it\u2019s those things that he remembers and they\u2019re positive memories. So, It\u2019s nice that he doesn\u2019t carry the burden that I think some of the older kids do from their journeys.<\/p>\n
[00:26:58] Maryanne: Absolutely. When you returned home, because I\u2019m still in touch with a couple of others who are now, one\u2019s 35 and the other one\u2019s 21, females, and it\u2019s interesting they were four, two, and they were diagnosed. And I remember others sharing with me when they went into a school environment returning home because the treatment for a child extends over a longer period of time. So sometimes when they step into normalcy, but they\u2019re still on maintenance, they\u2019re still on treatment, there can be a lot of anxiety related to, depending on the child, but also the parent. Was that time an anxious time for you?<\/p>\n
[00:27:43] Prue: Absolutely for us, I think, and our journey was a little bit different in cause he had AML. Your treatment\u2019s a lot more intense, but shorter. And especially with going to transplant our actual treatment period was shorter again, but that post-transplant period, you\u2019re in isolation for quite a while. He had his transplant in March and it wasn\u2019t until we were allowed to come home that he really left the hospital or the room at Leukaemia Foundation. And, then it wasn\u2019t until the December following that he was okayed to return to anything social outside of the immediate family.<\/p>\n
So, it was nice to reach those milestones. And I think because Chase managed his treatment so well, he didn\u2019t have any complications in transplant. It was quite smooth sailing as far as it goes, which was lovely. He didn\u2019t catch any colds or bugs or viruses while we were in that isolation period immediately following the transplant. It seems like we were just doing a lot of sitting at home and waiting till he could go out in the world, but it was definitely daunting because you don\u2019t know how they will be when they pick up that bug or, how they will handle it and how sick it might make them. And let\u2019s be honest, kids are germ pits, they carry it with them.<\/p>\n
It was very nervous, sending him back out there. And I remember when he started grade one, which was the beginning of 2020 the transplant team sent through a whole list of stuff for the school you know, do\u2019s and don\u2019ts, what they should be looking out for and how they should react if this happens or that happens.<\/p>\n
And I remember he had a temp of like 37, so very mild on his very first day of grade one and they rung me and I had to pick him up and I was like, \u201cOh God, what is this? What are we in for?\u201d And that was straight to the hospital. And cause yeah, as soon as it goes above 37, even though, that\u2019s not too worrying in a normal kid, it\u2019s to the hospital and they run a whole heap of tests. And I think we spent a night there that night. But then when he got cleared and went back on day three or something, I get a phone call from his prep teacher. And she goes, \u201cOh I, I turned my back for a minute and he took his shoes off and he\u2019s in the sand. Oh, what do I do? Is it going to be okay?\u201d And I\u2019m like, he\u2019ll be fine. It\u2019s all right. But you know, it was on the, very scary list that the transplant team sent through, you read it. And it is daunting if you haven\u2019t lived the experience. And yeah, it was just so worrying because he took his shoes off like every other kid to go in the sandpit. He was, a little preppy, he didn\u2019t know any different, just wanted to be like the other kids.<\/p>\n
[00:30:35] Maryanne: And, you know, that is the beauty of that age group. They wanna live in the present whilst they\u2019re well, they\u2019re up and at it. I know myself and you would\u2019ve witnessed it yourself. \u2019cause I do remember Chase, they\u2019ll have the Hickman line in and, they\u2019ll look like the patient, but if they\u2019re well. They\u2019re up climbing, they\u2019re running, they\u2019re getting into life and it\u2019s often the parents who spend their time on eggshells wondering, I want to give him some flexibility and opportunity to embrace life yet I want to wrap him in cotton wool and just ensure that he\u2019s safe. How are you moving on now? How are you now? Do you feel like you\u2019ve had any, like post-traumatic stress in relation to having to monitor a newborn a child with leukaemia and life in general?<\/p>\n
[00:31:24] Prue: Yeah, there\u2019s definitely a trauma attached to the experience. And I think, like those days that sit a little heavier than others. Sometimes it triggers when you\u2019re not expecting it. There\u2019s never one thing that oh, you know, this is gonna not be good. I don\u2019t cope well hearing about other kids diagnosed, like when they first get diagnosed, if that hits me, out of the blue, then I\u2019m just like, have to leave the room. And I think there was an instance here, different, because I work in an education space there was circumstances that became aware of but wasn\u2019t expecting it. I wasn\u2019t expecting to get that information in that environment, and I remember saying to someone afterwards, I\u2019m like, you\u2019ve got to give me a trigger warning before we have those conversations in future so.<\/p>\n
[00:32:07] Maryanne: Well that\u2019s that, true empathy isn\u2019t it, Prue?\u00a0<\/p>\n
[00:32:11] Prue: You remember, you were there, so. And I think you feel less for the actual patient and more for the family that\u2019s receiving it, I think, for me anyway. Cause I\u2019ve been in those shoes and I know what\u2019s to come and what that journey\u2019s like and how much of it really is a rollercoaster because it does change day to day. You\u2019re getting new information or you know, the team\u2019s getting more information that changes the trajectory of where you were going. I think that first week we were told, \u201cOh, you know, it\u2019s leukaemia, it\u2019s likely ALL, you\u2019ll have to do, three months of treatment here and then you\u2019ll go home and it\u2019ll be, you know, that maintenance period for a couple of years.\u201d<\/p>\n
And then the next day it was like, \u201cOh no, it\u2019s actually AML. So you\u2019ll be an inpatient for about six months and you do a four rounds of chemo and then you can go home\u201d and then, a couple of days later, it\u2019s \u201cOh, actually it\u2019s high risk. You\u2019re just doing two rounds and straight to transplant.\u201d And it\u2019s, all of that, as you\u2019re trying to digest the diagnosis and what it means, and it\u2019s just forever changing. It\u2019s like whiplash. Sometimes you don\u2019t know what\u2019s coming and you just come to terms with one thing and it changes on you. So, I think that though creates a bit of a resilience in everyday life. So less anxious when the proverbial shit hits the fan, I suppose. Like it\u2019s tend to get as stressed over those situations because you\u2019re so used to just getting on with it and dealing with it. So.<\/p>\n
[00:33:33] Maryanne: Built your resilience haven\u2019t you?<\/p>\n
[00:33:35] Prue: Yeah.<\/p>\n
[00:33:36] Maryanne: That acceptance that things are what they are and what is within your power.\u00a0<\/p>\n
[00:33:40] Prue: Correct<\/p>\n
[00:33:41] Maryanne: What can you control? And to have to pivot in that moment and look at. Okay. Who helped you through that time? Because I\u2019m sure it wouldn\u2019t have been an easy time.<\/p>\n
[00:33:49] Prue: You get support from everywhere. I think, during that active treatment phase. We\u2019re very lucky, our personal lives, we\u2019ve got a great support network of family and friends that really rallied behind us both in person, my parents were there to help with Jacob, but then also back home, they\u2019d be mowing our yard, and\u2026 We didn\u2019t have to worry about any of those things, but then I think like the hospital and the support that you get there from all of the different avenues, not just the direct medical team in relation to like explaining the treatments and all of the jargon and how it fits together. But the social workers and welfare workers and the charities. And then, the Leukaemia Foundation, just being able to have a place that felt like home. Like I, no disrespect to other charities that help in this space there, but I couldn\u2019t have lived in a hotel-style room for six months. It would have driven me up the wall. So to have a unit that was self-contained where you can cook a meal and, get a little sense of normalcy and those small moments where you are back in that space, \u2018cause for us, it was four months really of alternating nights, my husband and I at the hospital with Chase.<\/p>\n
So, when we finally all got to be together and to be able to be together in a space that allowed us to do the normal everyday things we would have done you know, had we been at home was, yeah, you can\u2019t put a price on that.\u00a0<\/p>\n
[00:35:23] Maryanne: No.<\/p>\n
[00:35:23] Prue: And I think the families as well in the villages, you\u2019re all on somewhat of a similar journey and it was, it\u2019s lovely. I don\u2019t know if you remember Maryanne, but it\u2019d be 4 pm in the afternoon and everybody had toddle out of their little units and down to the playground and that\u2019s where we\u2019d all have a catch up and there might be a wine here or a coffee there and..<\/p>\n
[00:35:44] Maryanne: It\u2019s connection, isn\u2019t it?\u00a0<\/p>\n
[00:35:45] Prue: Yeah.<\/p>\n
[00:35:45] Maryanne: Connection is key.<\/p>\n
[00:35:47] Prue: Yeah, and just to have that understanding. And I think again, other places that offer a space for you to stay, everyone\u2019s on a slightly different path or diagnosis will be different, or they might be there for trauma because somebody\u2019s had a, you know, a motorbike accident. Whereas at the Leukaemia Foundation Villages, all have a really deep understanding and respect for the journey and the importance of things like cleanliness and..<\/p>\n
[00:36:16] Maryanne: Yes. That respect, that silent respect where you know that you\u2019ve got to look out for each other the \u201cwhy\u201d around why you have to.<\/p>\n
[00:36:23] Prue: Yeah, correct.<\/p>\n
[00:36:25] Maryanne: So, looking, five years now post-transplant.<\/p>\n
[00:36:29] Prue: Yeah, nearly six.<\/p>\n
[00:36:29] Maryanne: Nearly six years post-transplant, Prue. With the theme of our invitation, we\u2019re looking at, where are they now? And so Chase is going into year five. How is he managing at school? Do you see any aftermath? Do you see any things that you need to continue on providing that support and lens for him, or?\u00a0<\/p>\n
[00:36:54] Prue: Initially when he started in schooling, because he spent so much time in isolation and with adults only. It took him a while to remember how to play with kids again. So that felt sort of, prep year he would often hang with the teachers at lunchtime and stuff because he\u2019d had adult company for nearly two years. And, that was a journey, but we were really lucky that it was a cool group of kids that kind of, they all went through the same classes from prep to year three together. So he was able to build some strong foundations there. And then I think, whilst he doesn\u2019t remember a lot of journey, I think he\u2019s built his own resilience in a way. So he\u2019s very carefree of the small stuff as well, I think, and the things that other kids will get really upset over, he just goes, eh, and moves on. It\u2019s hard to know what parts of his personality have been developed or derived as a result of that part of his journey and what parts were always going to be him. Cause he was so young.<\/p>\n
[00:37:56] Maryanne: Yeah.<\/p>\n
[00:37:56] Prue: But he\u2019s doing really well. He, yeah\u2026<\/p>\n
[00:37:58] Maryanne: Yeah, he looks really well bopping around in the background. How about you? How\u2019s, you know, moving on, and how are you and how\u2019s your relationship? How\u2019s your hubby?<\/p>\n
[00:38:10] Prue: Yeah. I think, I don\u2019t know if it\u2019s us, again, it\u2019s hard to know what part of you and who you are in this moment has come from events or what was always, you know, it\u2019s that nature versus nurture argument.\u00a0<\/p>\n
[00:38:23] Maryanne: Yes.<\/p>\n
[00:38:23] Prue: But I think for us, we, very much enjoy living in the moment. For me personally and professionally, I made some changes once we got home. And set some real strong boundaries, which I find hilarious as I\u2019m sitting at my work, having this conversation with you when I was going to try and be at home to do it. But I did really set some strong boundaries, professionally and, where I wanted to go career-wise as well. So I\u2019ve moved into a space of working in not for profits to, where you feel like you\u2019re contributing to something bigger, bigger than the bottom line anyway. And that\u2019s nice and I\u2019m very conscious of time at home and being present. I think again, both myself and my husband, we, that perspective it is what it is and it\u2019s outside our control and just moving forward with whatever is thrown at you in that moment.<\/p>\n
[00:39:19] Maryanne: Were you both on the same page moving forward, aren\u2019t you?<\/p>\n
[00:39:22] Prue: Yeah and I think you\u2019re just more accepting of those challenges that get thrown your way and, yeah, finding a path forward that you\u2019re comfortable with.<\/p>\n
[00:39:33] Maryanne: Do you have any, because you know, often I don\u2019t know whether you\u2019ve had the opportunity to listen to other conversations shared in this space often we ask, and I\u2019ll certainly ask you because for those that are new to starting on the pathway of treatment and newly diagnosed with the child. They\u2019ll be reaching out and wanting to listen to someone who\u2019s further down the track. Are there any key things that you think that would be, really just pearls of wisdom or just offerings of comfort for those starting?<\/p>\n
[00:40:03]\u00a0 Prue: Yeah, definitely. We were told it was the emergency doctor that was on the plane that flew Chase down with my husband. When we met them in emergency at the hospital in Brisbane, I remember this doctor saying to us, to my husband and I, he said, \u201cTake all the pictures.\u201d He said, \u201cEven if that\u2019s all you have left, take all the pictures\u201d. And I remember that so profoundly and it\u2019s so true. Like some of them are really hard. It took me years to be able to look back on some of them, years. But I\u2019m so glad that I listened to that. So that\u2019s probably one thing I\u2019d say like, just, it is going to be the toughest and the most challenging time especially as a parent to watch, your child go through that and not really having any sense of control over it at all. But yeah, take the pictures, you\u2019ll be grateful for them, no matter what the outcome. I think the other thing is don\u2019t let pride get in the way. I know in the early days, people are wanting to give and they\u2019re wanting to do whatever they can to help and to ease the burden. And I know myself and my husband are both, the sort of people that it\u2019s pride and you don\u2019t want to always accept that.<\/p>\n
So I do always say to people when I talk to them that are at the beginning of their journey, I say, \u201cJust say yes.\u201d Because people want to help in whatever way they can. And, sometimes that looks like mowing your lawn, or sometimes that looks like contributing to a GoFundMe page. Sometimes it looks like a cooked meal, put it, whatever it is. So just say yes, forget about the pride. Don\u2019t think about, \u201cOh, they\u2019re gonna expect something later\u201d because they don\u2019t. So yeah, I think take the pictures and just say yes.<\/p>\n
[00:41:49] Maryanne: Oh, they\u2019re lovely messages, and so humbling really, Prue. And I know that you are someone who gives back, and I think when in life, if you look at the full circle, you are now in a position where your little boy is immersed in school, he\u2019s ticked off coming up to his six years post, he\u2019s bopping around behind you, he\u2019s immersed in soccer and the joys of being a little boy. And you can celebrate that and you\u2019re giving back, you\u2019re sharing your story for others to see: a success, which gives comfort, doesn\u2019t it?<\/p>\n
[00:42:25] Prue: Yeah, and we went on a family camp recently with some other families, and I think sometimes you go, \u201cOh, we\u2019re so far along in the journey, should we still be saying yes to these things when they\u2019re offered?\u201d And I was talking to a family that\u2019s probably only two years on in their journey. So nowhere near as far as us. And I mentioned that, that sometimes you wonder if, oh, you, are you taking too much? Are you accepting too many things? And they said, \u201cOh no, it\u2019s so great to see you guys here and to see where you\u2019re at,\u201d cause they\u2019re still just fresh off treatment a couple of years on from diagnosis. They say, you know, this is what it\u2019s about. It\u2019s, we can, it\u2019s something to hope for, I suppose.<\/p>\n
[00:43:08] Maryanne: Hmm. I mean, that generosity of the tickets that you bought.<\/p>\n
[00:43:11]\u00a0 Prue: Oh, the Pink ones.<\/p>\n
[00:43:14] Maryanne: Yeah, the Pink tickets that you bought, and I will mention this story because this is that full circle of giving. Prue you bought for your own enjoyment, some tickets to Pink and for whatever reason and circumstances you are unable to make that concert, but guess who went, the 22-year-old who was diagnosed at four who\u2019s moving on with life has just graduated from a degree and, you know, that full circle of paying it forward and how grateful was she, she squealed through the phone with excitement. Plus also she was the one who said, give them my number because that message of hope.<\/p>\n
[00:43:53] Prue: Yeah<\/p>\n
[00:43:54] Maryanne: It\u2019s a seed that, you know. Oh, everything will be okay, and what we\u2019re doing, and living in the present, but enjoying things as well, as we go along.<\/p>\n
[00:44:03] Prue: Yeah. I\u2019d actually forgotten about those until you mentioned it, to be honest.<\/p>\n
[00:44:07] Maryanne: Yeah.. well I remember all stories Prue. Because, I do, I feel privileged to have met so many people, like Chase and yourself and I\u2019m still regularly in contact with them, her and her mum. I do feel privileged. Thank you. Look, thank you for sharing with us this morning where you are now five years down the track. I don\u2019t know whether Chase wants to say anything little bit more if he\u2019s um, \u2019cause we, he\u2019s, done and dusted.<\/p>\n
[00:44:34] Prue: Yeah I\u2019m not sure we\u2019ll get much more out of him, Maryanne.<\/p>\n
[00:44:37] Maryanne: That\u2019s okay. That\u2019s okay. I really do value the time that you\u2019ve given here this morning, Prue, and thank you very much.<\/p>\n
[00:44:43] Prue: That\u2019s all right. Thank you for having me.<\/p>\n","protected":false},"excerpt":{"rendered":"[00:02:36] Kate: Hello and welcome to Talking Blood Cancer Podcast. I am your host, Kate Arkadieff, and today…\n","protected":false},"author":2,"featured_media":214547,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[131443,64,63,137,131444],"class_list":["post-214546","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-acute-myeloid-leukaemia","tag-au","tag-australia","tag-health","tag-support-services"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/214546","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=214546"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/214546\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/214547"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=214546"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=214546"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=214546"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}