Jenaya - Grief & Joy with Infantile Fibrosarcoma

In this heartfelt episode, Janaya, shares her family's challenging journey after her son Tobias was diagnosed with a rare childhood cancer called infantile fibrosarcoma. Diagnosed at three weeks old, Tobias's life has been a series of medical challenges, surgeries, and treatments, complicated further by the COVID-19 pandemic. Janaya discusses the importance of parental advocacy, the emotional rollercoaster of medical diagnoses, and the support systems that helped her family navigate their trials. After multiple rounds of chemotherapy and an experimental drug, Tobias is now in remission. Janaya also offers words of wisdom and encouragement for healthcare professionals and parents facing similar battles.

Resources discussed in this episode: @idrawchildhoodcancer on Instagram and Facebook

visit our website at www.paedseducation.com.au

Transcript

Hi, i'm Janaya, a Gila woman based out of the Gold Coast in Queensland.

I am married to my wonderful husband of eight years and we have two children, Tobias and Lucinda. Tobias is three and Lucinda is eight and a half months.

Tobias, was diagnosed with a rare childhood cancer just after he was born. he was about three weeks old when we got his official diagnosis. And he was diagnosed with infantile fibro sarcoma, a soft tissue tumor. In his shoulder and left arm developed while he was still in utero.

It was in the middle of Covid, so I was pregnant during 2021 and we'd been going along the scans. I had hyperemesis as well. 

I had a minor fall at home

I tripped over the bed and didn't think anything of it. Messaged my midwife the next morning and she's oh, I'd prefer you go in and get checked out. So I went to the hospital and everything was looking fine, but they sent me to do a wellbeing scan the [00:01:00] following day just to make sure there was no bleeding or that my placenta was looking okay.

At that scan I remember seeing strange shapes on the screen I just didn't know how to read an ultrasound. I was there on my own. The ultrasound text said, oh, are you, do you, are you seeing a doctor soon?

And I said, oh, I've actually got an appointment with the obstetrician on Monday, which was completely coincidental. And she's oh, okay. Alright. I was so excited. It was the first time I'd seen him in 3D and I got a little printout, which I hadn't got previously in the pregnancy. So that's where my mind was on that.

And then I went to the obstetrician's office on the Monday. I was like, this is just gonna be a quick visit, talking about birth plan and some other issues that I'd had going on that were relatively minor. And as soon as I walked in, they said, oh, so we found something on the ultrasound.

We found a mass and they said they thought it was a Herman, so a type of vascular birthmark. But they were gonna refer me to maternal fetal medicine and they showed me a photo on [00:02:00] Google and it was just like a little round mark on the arm, looked a bit like a bruise. And I was like, ah, like that's fine.

We were referred to maternal fetal medicine. We got an appointment within a day it's usually a sign that something's quite wrong when they fit you in that fast.

In my mind I thought, oh, it's not really gonna be anything. Maybe it's disappeared. Maybe they got it wrong and it hadn't disappeared and they hadn't got it wrong. We went in and there was quite a large mass that was discovered on his arm and shoulder that hadn't been there before.

And it was very vascular. There was a lot of blood flow to it, to the point where it was affecting his heart. So they were concerned that he may develop heart failure. While I was still pregnant with him, we were told, he could have a heart attack in the womb. I was extremely worried about could he pass away and I not know could this mass rupture and could he bleed out while I was still pregnant with him.

And they did all the scans. They took [00:03:00] us into the consult room where they shared that information with us, and then also that they thought it was a congenital hemangioma. And they said even less likely. And it is so unlikely, but we just have to say it is, it could be a sarcoma.

And to be honest, at that point I didn't really know what a sarcoma was and didn't really think anything of it because they were like, that is that less than 1% super rare outcome that we just have to check the box that we've set it. And so that was our introduction to MFM and to knowing that something wasn't going, as smoothly 

we were. Deemed high risk. And I was having, ultrasounds with maternal fetal medicine every two weeks, mainly to check his heart was still coping, as he grew.

Wow. I can only imagine the type of, stress that you go under when they're talking about all those different things. And I know exactly what you're talking about when they're 

It's, essentially a [00:04:00] form of informed consent. And it happens even when people go in for surgery. We've gotta talk about all of these potential risks and they're each weighted with a percentage, but obviously somebody is that 1%, there is a group of people that fit into that percentage.

it's something I often reflect on as a healthcare professional, when I'm involved in those conversations, usually as a person sitting as a support person rather than delivering it. 'cause it's so often our medical colleagues. And one of those things I wonder is like, how much, is a parent taking this in right now? I researched an incredible amount about hemangiomas and the congenital. He angios and basically tried to educate myself as much as possible and find other stories.

I turned to social media to look for other hemangioma families, and yeah, read so much over the next few days about what that looks like, what to expect, the different medications that are available. The size of the [00:05:00] mass, was so large actually that the, like the pro professor in the MFM, department, he'd been in the role I think 20, 25 years.

And he did say he'd never seen one the size of what was on Tobias. And so that kind of clued us in with, okay, like this sounds like it's a bit more than, just a little birthmark, but, they were still fairly confident that it was most likely going to be just a very unusual type of birthmark. Yeah.

Okay. And I was just gonna say, so that wasn't what it ended up being though, was it? No, not at all. So yeah, basically from that point in time, I was about 30 weeks at that stage. And so they first confirmed with us whether we wanted to continue the pregnancy, I didn't realize what they were asking when they asked it.

in my mind I was like, oh, it's a birthmark. Why wouldn't I? And so that was just, a lot to process at that time as well. But we [00:06:00] made it through to 30 obviously we continued with the pregnancy, and went through all the MFM appointments at 39 and three, I delivered by a c-section. Gave birth to our beautiful boy. He, came out crying. He topped all his ATKA scores, and he was able to come and have skin to skin while they sewed me up. I remember seeing a glimpse of his arm when they lifted him over the sheet and going, oh that's not too bad. I saw a red mark.

It wasn't until a couple of hours later that I got to really have a look. When he was up in the special care nursery and it was quite confronting, I think no one expected it to look the way it did. He had a hard, dark, it looked like the back of his shoulder was bruised and it was like rock hard.

his arm was swollen probably at least two to three times the size of his other arm. There was deep cracks and crevices. There were skin changes. There were tumors of varying type very surprising. I don't think any of the [00:07:00] medical staff had expected it to look like that.

No one had ever seen anything like it before. We went through a bit of a, journey to get the diagnosis. We were initially discharged, from the hospital and their outpatient clinic, with a diagnosis of a congenital hemangioma. And, were directed to wait for a referral to a vascular anomalies click.

At that stage, we were quite concerned just because of the way it looked and it was growing in those first few weeks, we reached out to an international organization, that specialized in vascular birth marks and just said, Hey, have you seen anything like this?

They got back to us immediately and said, this baby needs urgent testing. This isn't an infantile hemangioma. They said it could be something different, like a more rare type of, vascular anomaly. And so I went to the gp, I went to the ED trying to escalate my concerns with what was happening and the fact that we didn't have an appointment until [00:08:00] several months later, and everyone was telling me, this.

The doctors are the experts in this area. You just need to trust them. You've been given your diagnosis, you just need to wait for your appointment. 

Stop wasting our time. That's how I was feeling at that time. I almost did stop pushing, especially after we were discharged from the emergency department, when he was two weeks old and told, you've got your diagnosis. You just need to wait for that outpatient clinic. And around the same time, I was told to get in contact with an interventional radiologist interstate that worked with the International Vascular Birthmark Foundation.

I sent through a few photos, a bit of a summary.

I got a call from a private number the next day. It was the doctor and he said, look, I agree your baby needs urgent testing. If you can come to the ed, tell them I sent you, we will get him admitted. We'll get a biopsy and we'll get a treatment plan straight away at that stage, it [00:09:00] was February, 2022.

The omicron variant of Covid was exploding across the country. They'd just reopened the borders between some of the states as well. So that was a really scary time, having a newborn in and of itself, let alone traveling with that newborn interstate, to try and get answers for what was going on.

Like it just, must have been a really tough time as it was. And then when you add, this advocacy that you're talking about, I'm really interested to hear a little bit more about this. 'cause I think it's a really important aspect, as parents, with our children, you are seeing something which you've got some concerns about, and you've obviously, tried to use everything within your power to, get to the bottom of that by, asking these groups that are experts in these types of skin conditions i'm just really interested to hear a little bit more about how you went about that, because sometimes, I can hear that you are persistent, which is awesome.

I think [00:10:00] I'm someone personally who previously did not want to rock the boat. I did not wanna go against, what I'd been told. I didn't wanna be a bother, I didn't wanna be annoying. So looking back, the fact that I was so persistent with that I think was the start of what has turned into quite, a strong advocacy muscle, 

I had support of family, and some of the midwifery staff. So I went through, midwifery group practice for, my antenatal care, which was fantastic. So I know they were trying to advocate behind the scenes. I had family support. I think it was my mom initially reached out to the international Foundation just to say something and connect and then I took over from there and kept talking.

I think, sharing your concerns is really scary, particularly when you're in, a medical setting and, there's the doctors who are the experts and to [00:11:00] trust what they're doing and saying. But I think you've also got your intuition and your gut and your mom gut that everyone said, and I never really understood, but it's okay to keep asking questions if something isn't sitting right 

the biggest thing that I've learned, is to not be afraid to ask the question, or to keep asking questions if you're not getting the answers that are leading to a resolution or help for you or your little one.

People saying, the doctors are the experts and, they're human too. And that, sometimes we might not come to the right conclusion initially, and it can take someone asking the right question at the right time to, take you down the path that might eventually lead you to diagnosis or the correct treatment.

And yeah, I think that's a really good tip for people, to just keep on asking questions. And, sometimes it can just be, I know for a lot of families, they might turn up with their children really acutely unwell, for example. And as first time moms, we get really worried about everything I [00:12:00] do too, even though I'm a pediatric ICU nurse, but I'm a mom first.

I think, it's hard for us to know is this, our first time mom anxiety or is it, genuinely something. But sometimes it's simply saying if you are not worried, can you tell me like why that is yet you're not worried? What's giving you the information that everything is okay?

And then it becomes more of a conversation than feeling like there's a power dynamic, but definitely I think, as a parent, you're definitely part of, your child's care, your child best. Those little things that, the health staff may or may not see. And I think it's also, I know for me, really important to come across, obviously it can be an emotional time, but to try, be, as you would with anyone and speak with kindness and respect even in such emotionally charged situations and, coming with the facts that, this is the medical condition or this is what's going on.

These are why I am concerned. And as you said, can you explain why I should or shouldn't be concerned, or what you're seeing differently here? Yeah. I love that, speaking with kindness and respect. I think everybody's at there for the same reason, because we [00:13:00] want, children to be happy and healthy and, reach their full potential.

Everyone's working towards that same goal, and we can do that respectfully and kindly. Absolutely. All right, so let's take it up then from, you've obviously been able to get in touch with a person who has heard your concerns. So what did that process then look like how did you finally get to the bottom of, what was actually going on?

Yeah, so I. Used my flybys points that we'd collected shopping at Kohl's in Kmart. I bought a ticket to this interstate hospital that, we ended up getting our diagnosis at. We turned up at the hospital, we got admitted. They took a biopsy, they managed to get a hold of some of the scans and, tests that had been done previously.

The interventional radiologist, who I guess specialized in this cases came through the consult. Even up until I met him, I was still in the back of my head going, I've blown this out of proportion. [00:14:00]I've traveled all this way.

And then I remember him coming and sitting down and doing a quick examination saying, this doesn't look, feel, or image like congenital hemangioma. It could be a couple of things, we'll just get the biopsy first and we'll go from there.

He was three weeks old. If you've ever fasted a baby or a child, you can know how tricky that can be, especially when they're that young and they don't understand what's going on. Fast forward, they took him back, they did the biopsy. And within four hours we were taken into a room. At that stage, still quite naive to how consults worked 

they said, leave the above with the nurses and come down here. And they took us to a room at the back of the ward. And as I walked in, I remember thinking, oh, this is a really beautiful room.

But even at that stage, I still did not comprehend that we were about to become that family that was having the bad news broken to them. And I remember going in and sitting down and the doctor saying, look he went through the procedure [00:15:00] really well.

He said, it's not a hemangioma. It's a malignant spindle, cell neoplasm, which is cancer. And unfortunately I can't take it any further, but the oncology doctors will be here shortly to take over. I just remember, we just went into shock.

I remember going extremely still. I held my husband's hand and we just. Utter disbelief of your baby has cancer, like your baby is not even a month old and he has cancer and trying to comprehend that sometimes, even now, three years later, I actually don't think I comprehend that still at times.

But yeah, so that's when we found out, it was covid as well, so everyone was masked up and they told us, you can remove your masks. At that time, 'cause it was an emotional time and he tried to answer some questions as best as he could. But obviously oncology wasn't his area of expertise.

And then they left us, we had full access to the [00:16:00] room to, call family, let them know, they knew that we were coming to get a biopsy. And this, by this stage, I think it was about four 30 in the afternoon. It's like your life must change in an instant, from this reality. To a whole new one that you have no answers for and no real information for. yeah, I've certainly sat in those rooms as well with families, as I've heard, devastating, tragic, terrible news.

there's not much that we can do as professionals other than just, hold space for that and bear a witness for it and, be present if anything, comes up that we can be of assistance for. it takes time to digest 

Is there any way that we can, 

is there anything that you would've liked to have heard, or would you have liked done differently? Yeah, I think it could be really hard to have a blanket statement in how to do this better, because everyone is so different and every family is so different. Families I've met along the [00:17:00] way I know for me and for us, we were very much, we want.

The facts. We wanna know the nitty gritty. We want to, understand exactly what is going on, what the options are, what the risks are. Basically just tell us everything. Whereas other families I've met just want to know, brief brush strokes and then just take it as it comes and only deal with what needs to be dealt with as it comes along.

I think the most important part is just being human through it. And as you said, holding space. I think we it's such a sacred space, in those rooms when you are with people on what is often the worst days of their lives.

And even just whether it be, I dunno, it even silence I think is okay. It's just knowing that someone else is there. Like you're not gonna have the right words to say. I remember we lost a lot of friends along the way, and I think part of it was that they didn't know what to say to us, and so they didn't say anything at all.

And so there were relationships that we thought we [00:18:00] had with people that, fell away. And I don't care what you say, just say something because I don't even know what to say. And if I don't know what to say and I'm the one going through it. Of course, I don't expect you to know what to say.

An encouragement to other people or even friends and family that might be listening that have someone going through something significant in their life is you may not say the right thing and you may not know what to say, but saying something is better than saying nothing. Even if it's just a, Hey, I'm thinking of you, or, I'm so sorry, there's dinner at your doorstep.

Look, I hadn't even really thought about how that might be. Obviously we see that sometimes with, when people are grieving the loss of a loved one, but I suppose this is a grief, isn't it? This getting a diagnosis like this, even if you do have a treatment plan, like there is a grief and a grieving in that.

And, gosh, I'm so sorry that, amongst all of that as well and covid that, your support network shifted and changed, but it sounds like you have a very close [00:19:00] family. Did they rally around you in that period of time then? Yeah, they did. So we have incredible family support. We're also part of a local church community, and so that community really stepped up and we're incredible as well.

We just felt really held through that whole time. And I guess when I say we lost relationships through that time, we also gained new ones, which. beautiful as well. Beauty from Ashes, I guess you could call it. It made space for new relationships that, people that were walking alongside you and stayed even though it was hard.

it makes a lot of sense. And, yeah, I think some people do stand up in that period of time and, are there for you to lean on for sure. And I think it's really useful advice as well. How you explain sometimes, people don't often have the word that words, that's really common around grief.

Like that we don't, we have the feelings, but we don't have the words. just expressing that we are feeling some kind of way and that we're around and [00:20:00] present still, might be all that we can do. We don't learn how to have a conversation about grief with your loved ones, as we're heading through school.

You only learn these things when you are exposed to them, and we don't often have the language for that. So it can be really tricky. Yeah. So from that point, from that conversation. But there was a bit of a treatment plan.

What were the conversations about the next steps once you finally had them? Yeah, so we met with the oncologist. We found out that infantile, fibro sarcoma is an incredibly rare childhood cancer.

I believe the statistics are, it's less than 1% of all childhood cancer diagnoses. Usually I think 85 to 90% of the cases have a very specific genetic mutation that is driving the tumor growth. And, incredibly, there is a targeted treatment that has been created or found for that specific genetic mutation.

It's called ntrk. And so they were very confident that he was gonna have this mutation, he'd be able to go onto the targeted treatment. The evidence for that is [00:21:00] basically the tumors melted away. There was very little side effects and children were able to, continue on with a relatively normal life.

Unfortunately, we found out that Toby didn't have that genetic mutation. He had an incredibly rare one. It was called TFG Met. They hadn't been able to find any in the literature at that point. So at this stage, it was not only an incredibly rare childhood cancer, I think the head of oncology had 

seen one case before. And it It wasn't presenting how, our sons was presenting. And it was the, it wasn't the genetic fusion that was driving it. So basically the oncologist, there was no protocol for his treatment, which was very difficult. I remember seeing, other families, like for example, leukemia treatments have their two year or three year protocol and you have induction and then you have, delayed intensification.

You have maintenance and there's different versions and different [00:22:00] pathways through that protocol, depending on how your child responds and what's available and what's not, and any complications they may have. But for us it was literally a blank slate, which was really scary. We didn't know what treatment was gonna be.

We didn't know how long it was gonna go for. We were told surgery wasn't an option at that stage. I found out later it was, surgery wasn't an option because the only surgical option was a four quarter amputation, which was the removal of his arm and shoulder. And as a three week old, it wasn't considered, the ethical thing to do before medical approaches had been tried.

So he. Our plan was to get all the testing and staging and a treatment plan in place before we went back to our home state. But he started to experience some infections and, complications where they came and told us, the cancer's progressing. We need to start treatment immediately.

within 24 hours he had a central line inserted. He'd had his PET scan and he'd started chemotherapy. At just a month old. [00:23:00] And I don't think watching your baby, that's three or four kilos, having, his central line was bigger than he was basically. It was a tiny in reality it was tiny, but on him it was huge.

And then watching, the nurses come while you hold your baby and the toxic chemotherapy is pushed into his body. That is such a difficult thing to comprehend, 

 a bit of a breath there. So we had a few complications at this stage as well. The first night he had. Chemo. I came down with my first bout of mastitis, and actually ended up in the ed of the adult portion of the hospital where we were. That was really difficult as well. I was favoring and in an extraordinary amount of pain at that stage.

I went on to have mastitis five times over the course of, his treatment. I think it often corresponded with, scan days and [00:24:00] some of the more intensive treatments. Just 'cause the lack of routine and not knowing, how long he's gonna be away for and having to fast for the general anesthetics.

And he had his first round of chemo. We were then transferred back to our home state via an air ambulance. And yeah, continued on with treatment. Long story short, when he was three months old, he'd been having chemo every week and we could see the tumors growing.

So the tumor on the back of his shoulder, it almost looked the same size as his head. You couldn't even fit your whole hand, like an adult hand around it. It just, it was hard. It looked like it was going to just, the skin was pulled so tight. It was, yeah. Very intense to see. And his arm itself was consistently having infections where the tumors were.

And it was, yeah, whole bunch of stuff going on there. And then when he was three months old, we had his next lot of [00:25:00] scans, the next sort of PET scans. And, the oncologists were hopeful that it was just a reaction to the chemotherapy and inflammation and that it meant that the chemo was doing its job and the cancer was dying.

But we got the results back and unfortunately it was all tumor growth and at this stage I think it had grown to roughly like 12 centimeters in diameter and on a tiny little baby like that, that was huge, The oncologists and the orthopedic surgeons had come together and they came to us and said, look, it's growing.

The chemotherapy hasn't worked. Our options are we give more intensive chemo with no guarantee that it will work or that we'll end up in a worse position surgically in a couple of months time. We can't guarantee it won't metastasize

Or the other option is we do a four quarter amputation now where we go in and remove the arm and shoulder. So to [00:26:00] have that, decision put on you as brand new parents with your three month old, it was my first mother's day actually, we were admitted with febrile neutropenia around the same time that we got these results.

ultimately we initially decided to go down the route of amputation. The fear of the chemotherapy not working of it, metastasizing he was gonna need to have chemotherapy after surgery anyway, so we didn't want him having, more chemotherapy than he needed and all the potential side effects that come with that.

With the chemotherapy in general, he was already experiencing all the common side effects, the nausea, the hair loss, the vomiting, bits of mucositis. Just general discomfort. And then we'd also experienced a lot of the more serious side effects.

The bone marrow suppression. He'd had his first blood transfusion at six weeks old, and needed many over that time of packed red blood cells and platelets when his bone marrow was failing due to the [00:27:00] toxicity of the treatments. He had, a lot of febrile neutropenia admissions. He had to have GCSF injections daily for several weeks after chemotherapy rounds to try and get his bone marrow back up to where it needed to be.

And then when you're given these sheets as well, you're told, he could be experiencing infertility in the future. He could have secondary malignancies because of this treatment. Actually when he was first diagnosed, I remember going to our first oncology consult and we're there and the oncologist looked at us and he said, look, we give these kids chemotherapy, 

our hope is that the treatment will kill the cancer before it kills your child effectively. And having that in your mind and then having to make those decisions, okay, do we just cut the cancer off now? But might still need to give him chemo? Do we do the stronger chemo? Started going through all the consults to have the surgery.[00:28:00]

They hadn't found any cases where a child as young as him had a four quarter amputation and the way that the tumor was and the amount of skin they would need to try and graft and where were they gonna get that skin from? And he had tumor that was extending down his chest wall. So removing that and then explaining how they were gonna have to cut, further down his side to try and stretch the skin across to cover the wound because it was so large where they would be removing the tumor.

So there was a lot of really intense conversations around those few days. Two days out we'd been speaking with the oncologists and they came to us and I don't know if they found new information or just presented it in a different way, but effectively we found out that the chance of it, metastasizing in a period of trial chemo was less than the chance of it recurring at the site of the amputation.

And if it recurred at the side of the amputation, there wouldn't have been, like, you can't take away [00:29:00] much more after a four quarter amputation, especially on a five kilo baby. And so we ultimately went with the chemotherapy. We decided to keep the cancer in his body, which was a horrifically unfathomable choice so that we could see if the stronger chemotherapy was having any effect.

And success would be if the tumor stopped growing. Ultimately it didn't shrink much. But it stopped it from growing at that stage. And from there he progressively just got given stronger and stronger chemo until just before he turned one.

Balancing out, what you're hoping, for the future. Being able to give to bias, like a chance to be everything that you're hoping for 'em to be as that little baby. it really reinforces to us as health professionals that. Being able to present the information and continuing to present it because perhaps, as you said, you've gotten that information, but how overwhelming it must be to be a [00:30:00]parent, in that situation.

repeatedly having those conversations is really important. So you can use that to make a decision that you are happy with. 

Yeah, 

And it sounds like a lot of firsts too, like things that people hadn't seen or done or, not being able to say, look, we've done this here and it's worked 

that can make you feel reassured 'cause you go they've got good experience with trying this before, but, no one could even really give you that reassurance either. 

Yeah. 

Gosh, how relieved you must have been to hear that it had stopped growing and then that it had actually started shrinking. How long did it take until, they were like it's gone. Has it gone? Is it, has it shrunk away to nothing? Where are you at now? his journey continued over that first year of life.

The, that second line of chemotherapy, stopped it from growing and started shrinking it, but not by anything significant. They wanted to get him over six months old. Add in even stronger chemotherapies. Some, but I [00:31:00] would definitely not say that. That's my, definitely not my expertise at all, but reel them off if you like. I'm sure other people may be, he went through, if anyone else is listening that has a little one going through and can recognize any of the names he had Vin Cine, DACT, mycin. He had cyclophosphamide, phosphamide, etoposide and Doxorubicin.

I think that was most of them, but it was a lot. And another thing as well, I think a lot of people don't understand is that children are given the same chemotherapy agents that adults are. There's no such thing as, child cancer treatment is the same drugs that were developed for adults and they're just given to children because there's no other option basically.

So any, side effects or experiences that you've seen or heard of Kids are going through it, if not more, sometimes because their bodies are so different to adults and, metabolize things differently and experience things differently. And so one of the ones was doxorubicin.

It's also known as the red Devil. In it's literally bright red [00:32:00] and it can turn your, like urine red or orange. We were told, maybe even his tears could go red or orange. Just an extremely toxic or chemotherapy's toxic. But this one's extremely toxic and there's a lot of cardiotoxicity that is associated with it 

he could develop heart failure in the future because of having to have this treatment. And there's a lifetime limit of this type of chemotherapy that you can have as well. So even him at six months old, having to sign the consents and agreeing to using this, but there's literally no other option at that time to save his life.

there was also a worldwide shortage of a, like a protective drug for the heart that they can give alongside it to help reduce the risk of that cardiotoxicity. 

And so when he was six months old, they stepped up the chemo yet again. They changed it around, added in extra ones. We were in hospital for some of them, like a week at a time, having constant. Chemo [00:33:00] like every day for six days straight. He was on hyperhydration, I think it was to prevent like the hemorrhagic cystitis I think it was.

There was a special medication, in the hyperhydration, which basically means it's connected to his central line and it pumps him full of fluids to try and clear his kidneys and reduce the organ damage that he would otherwise experience. And he got to about 10 or 11 months old and the cancer was still very much there.

And they came to us and said, look, he's had 12 rounds of chemo. At that stage it been 12 full cycles. And there was never a time he wasn't cytotoxic in that first year of life, 

They're telling us every single excretion from him, whether it be saliva, vomit, urine, feces is toxic. Can I even breastfeed my baby? Having to wash his clothes on a separate laundry cycle at certain heats to the rest of the family's [00:34:00] clothes, having to wear special gloves to change every nappy our own PPE when dealing with things.

But yeah, that's a whole other aspect of it. But. They came to us and said, look, I think we've got to the extent of what this chemotherapy treatment is going to do. And unfortunately, it has not been curative. They were going to attempt to do a limb salvage surgery. They had to cancel that because the last lot of scans they did, they weren't able to isolate the cancer that was in his arm.

They could isolate the tumor in the shoulder, but not the cancer in the tissues of his arm. And so our only option returned to being a four quarter amputation. So here we are once again, eight, nine months later. Same decision that we were faced with back when he was three months old, except now he had an extra eight months of even more toxic chemotherapy side effects and, the long-term effects that will be on edge for the rest of [00:35:00] his life.

And, that was looking like our only option. So we started prepping for that again. And then his oncologist, genetic testing had shown his, there was a new experimental drug, that acted on the MET genetic fusion. It was a met inhibitor and theoretically it could. Shrink or affect what was driving his tumor.

It was so new, it had never been used in his cancer. I'm not sure if it had been used on children, particularly as young as him. One of the reasons it hadn't been an option previously, they'd known about it, but because it was so new and because they knew the parameters of chemotherapy, they didn't know for this drug.

So chemotherapy was then deemed the safer option. They, his oncologist applied for compassionate use, like urgent, compassionate use of that drug, and it was granted, even choosing to, to go down that route was really scary because it was such an unknown. And I remember [00:36:00] I'd fully come to terms with a four quarter amputation.

My husband and I, we'd both come to terms with it. I expected that's what was gonna happen. We prepared for, how life would adjust. I'd reached out to people I'd found online who had experienced four quarter amputations later in life to get their advice on, how can we best support our son as he's growing with this, type of limb difference and limb loss.

And we ultimately started this compassionate approval of this drug crizotinib. And they said, if it keeps growing, if the cancer keeps growing in a month, we will just go straight to the surgery and get that done with, but literally within a month that cancer started melting away.

Like you could see a difference where we hadn't seen a difference in a year of chemo. Literally within a month we saw it getting smaller physically, and he had a nasogastric tube, for the time that he was taking that medication because it was the only medication he never took orally. He was a champ at [00:37:00] taking meds.

But they literally just said, okay, we'll just give it a month. If it's not getting bigger, we'll give it another month and kept going like that.

And so he was on it for 10 months. They sent him for scans and they said, look like the tumor's gone down to two centimeters and orthopedics want to go in and remove it before they lose it. Basically, the medication was working that well, so he got booked in, they removed the rest of the tumor from the back of his shoulder.

By that stage, there was no detectable tumor in his arm, which is what had been preventing, him from just having a resection previously. The cancer in his arm is what was driving the need for a four quarter amputation. But they were able to resect the remains of the tumor from his shoulder and he underwent that surgery.

When he was about 18, he'd be 20 months old. And, pathology came back on that and it was just all scar tissue. And then he was declared in remission [00:38:00] after that point. Yeah. And he's currently 18 months in remission as of now. Oh, incredible. Gosh, I can only imagine after having so many setbacks and feeling like you weren't progressing to then taking a risk on this experimental drug and just have it melt away this cancer that had been present, like even in utero and gosh, that must have just felt so I can't even, I don't think I've got any adjectives to describe what a relief it must be to have that news for once in that room that they take you to, which I'm sure they probably did to give you, the good news as well as the bad.

And that's incredible. So 18 months in remission, do you get like regular checkups and things like that now and, how is Tobias is he like meeting his milestones? Has it had to be a little bit of, rehab or anything like that after spending such a big chunk of the first couple of years of life in hospital?

Yeah. Yeah. What's life like now? He is incredible. He is meeting all [00:39:00] his milestones. He will talk your ear off if you let him. He loves singing and dancing and jumping. And I think one of the most incredible things, and I actually heard the doctors talk of it as being miraculous, is the fact through all of this, he had complete use and function of his arm and shoulder and fingers and dexterity.

I remember when he was born, I was talking to a physio that came and saw us at birth, when we were inpatient like 10 months later, and she said, yeah, we were going in there expecting him not to be able to move his arms at all due to the size and the complexity of it. And they were coming in to teach me how to position his arm so that it wouldn't crush his chest and stop him from breathing while trying to breastfeed type of thing.

And they walked in and he almost as though he lifted his arm and waved at them basically. And from there he just threw any rule book that there was out the window and used it. And even though now he does have a physical difference with his arm, it doesn't look [00:40:00] like, atypical arm.

But he uses it like. Nothing happened, basically, which is incredible. He's such a social butterfly. He loves being around people. Yeah, we have checkups. We just transitioned to every four months. So last year we were, every three months he was having, his scans, MRIs, x-rays, cts, 

Blood tests. And he's under, ophthalmology, cardiology, a bunch of different specialties to watch for some of those long-term side effects from the treatments and whatnot. But yeah, it's, we're so grateful and so thankful that, he's made it to this point and he's doing so well.

It's not lost on us. Yeah. Miraculous indeed. I was gonna say that'sThe other thing I was gonna ask is sometimes, with kids that have had a bit of time in hospital, at any point of their childhood, they can feel a bit scared or anxious or overwhelmed having to go back to those [00:41:00] appointments.

Do you notice that with Tobi, does he struggle with any sort of medical procedures or interventions as a result of. Having to go through so much, so young. Yeah, I think, I remember talking with a pediatrician when he was about six months old because I was aware of, we often have our body remembers things that we may not necessarily remember.

I remember at one stage I was trying to decide when he was getting daily injections, do I hold him while he gets the injections or do I let a nurse hold him? Is he going to associate the pain of the injection or the pain of the procedure with me holding him and will that affect our attachment and will, that kind of thing.

And I remember the pediatrician saying yes his body will remember, but his body knows that you're a safe place as well and if you're holding him that everything will ultimately be okay, even if what he's going through is really hard. So I held onto that as an encouragement through those times.

I think as he's getting older now and more independent and more aware [00:42:00] of what's going on, we're definitely finding some of that pushback, particularly going under general anesthetics. Now that he doesn't have a central line, he can't have the, propofol like push straight through, he needs to have the mask and, everything that involves.

Within the childhood cancer community, there's an incredible resource from, I draw Childhood Cancer and, by Angus Olson, and he creates books and resources for kids and families that are going through childhood cancer treatment.

So we have some of his books and one of them in particular is called My Scans, and it goes through the story of, Angus's own daughter went through childhood cancer herself. And, it goes through all the different scans of different procedures that you would often have. We sit there and we go through those books with him and he goes through the donut machine, so the MRI or the CT machine looks like a donut, and then afterwards we'll go out for donuts and sushi because it looks like the donut machine and he was so brave to go into the donut machine.

we take home the masks that are used for the [00:43:00] GA so that he can do medical play with it at home to try and help with that. The medical providers and the staff and the nursing teams and the doctors that are in the hospital. He had to go and get an echocardiogram. He gets them regularly, but on his last one, it was the first time he was really quite aware of what was going on. And even though the actual echo didn't end up going very smoothly, the sonographer herself was fantastic.

We bought along a doll and we bought along a book. And so she let him, scan the doll and showed him the whole process and was just so patient and so understanding. And honestly, that made such a difference to even my experience as a parent of having to take my child to go and do that when he was so fearful of it himself.

the way medical staff interact and support that can truly make all the difference as a parent who's often juggling, multiple kids and parking and stress of the hospital as well as the compounded medical trauma that got them to that point in the first place. 

I know that working in a hospital is a really stressful place to be and clinics [00:44:00] are so busy, but yeah, it really does make all the difference when you can hold that space and slow down and help kids through that. Yeah, they sound like fantastic resources. I might get the, links to those and pop them in the show notes in case anybody else wants to try and find them for their kiddos 

I'd just love to hear before we finish it off, one of the things that I like to ask is if you've got like any little words of wisdom, either for parents or for health professionals that you know you'd like to impart from, your journey.

Things like, you've already mentioned a few along the way around, just having holding space and, being patient and allowing people time like, with their procedures and stuff like that. But is there anything else that you feel, you'd like to impart little pearls of wisdom to anyone who might be listening?

Yeah, I think for health professionals, I. The job that you guys do is incredible and, it's so hard, but it's so meaningful and compassion fatigue [00:45:00] is real. And so I guess an encouragement to please take care of yourself so that when you are showing up in these spaces of, trauma and diagnoses and dealing with families, going through these unfathomable situations you can bring your best self to that, the kindness of our nurses and the staff honestly have seared themselves into my brain in a good way.

And just the incredible things that they've done to support us through that journey. And, memories that I've got of how they've gone above and beyond, in, in that. So yeah, I guess an encouragement to take care of yourself, and be kind to yourself as well. Is what you guys do is just incredible and so important and life changing.

And I think for any other parent or carer or someone that finds themself in this position, I know something that I quickly came to learn and struggled how to reconcile at first is that joy and grief. And joy and grief will always coexist, and that can [00:46:00] feel really disorienting, I think, when you don't expect it.

But resilience is born out of being able to, making of to hold both of those together at one time. I think you will have joy even within hospital walls, even within the trauma. I remember Toby's first smile happened after his second chemotherapy treatment when we were in isolation on that baby's ward after we'd just come back.

And it was such a scary position. But the joy of seeing him smile for the first time was incredible. And then obviously the grief of what he's going through and the grief of, the postpartum that I thought I would have or our family, just getting to know each other at home or the fact that everyone else I knew that had babies was going out to playgroups or going out for walks or catching up for coffee or just being able to love on their babies in the comfort of their home.

[00:47:00] And we were stuck in isolation, separated from our family, undergoing these horrible treatments with horrific side effects. And balancing that joy and grief is a tension that. Will continue on through your entire journey. And so to, an encouragement to embrace that, it can feel hard or as I said before, disorientating, but, I think it's really powerful when you can accept and be there in that space.

And I think as well, you meet a lot of other families along the way and you are exposed to a lot of other stories and a lot of other journeys, and holding that space for joy and grief in those times as well, yeah, is something that I think you can, you'll carry through with you for the rest of your life.

Really. My God, that is so true. Two different opposing things can be true at once. And yeah, there's a very conflicting feeling, but you're right. If you can accept that and I suppose surrender to it in some ways, [00:48:00] then it's a very powerful lesson. Yeah. Oh, I was gonna say, I remember getting to the end of the first year and thinking it, I could look back at this year and think of it as, a lost year.

Like we, we spent the whole time in hospital. We didn't really go out, we didn't get to experience a lot of these firsts or different things, but it was also. That year in hospital was still so much more than so many other families get to experience. And I could never look back and say, oh, that was a lost year because we had to spend it in hospital.

It was a year where we got to meet our beautiful boy and we got to watch him grow older, which so many people don't get to do. And so the privilege of that, even though it was in such a difficult time, is yeah, really powerful. And yeah time with your children is never lost no matter how you experience it.

It may be different to what you expect or what you wanted and [00:49:00] it's okay to grieve that, but it's never lost. Yeah. That's very powerful. thank you so much for chatting with me. Today Janaya, and for being so honest and sharing so much of your journey with Tobias and so many wonderful things that you've described in such an awful period of time as well.

Just really emphasizing how those two things can be true at the same time. Thank you for having me.