To our wonderful support network of family and friends, we are terribly sad to tell you that Ellie has relapsed 9 months into her remission. Her cancer is back, this time in her brain and bone marrow, which ultimately means her treatment hasn’t worked. We are shocked and devastated. We’re essentially trying to make sense of what this all means and understand what the options are for future treatment. 
 
What shocks us is that Ellie was thriving. She was doing so well physically, academically and socially at school, about to start netball, and was generally getting on with life and putting her treatment behind her. She has been excited about her hair growing back and the nearing opportunity to wear a ponytail again sometime soon. None of the ‘normal’ signs of relapse were evident. Instead, we noticed gradually over a week or so, that the left side of her body was not working normally and she reported numbness and tingling in her fingers and toes on the left side. She was carrying her left leg a bit and her left arm would hang by her side when she walked whilst the right one would pump quickly when walking or running. She had been regularly complaining of aches and pains all over her body for months, and we thought that it was all related, and that this was a normal post chemotherapy response. One night at dinner she said she couldn’t hold her fork with her left hand and then she complained that the left side of her face felt funny and didn’t look the same when she smiled. We knew something was going on and this realisation came a day or two before a scheduled blood check and clinic appointment, so we waited to raise it at the appointment. In these 48 hours leading up to the Thursday appointment we started to think that the reduced sensation and weakness in her limbs was something called peripheral neuropathy, which can be a common post chemo side effect. We were scared enough by the implications of this alone. Relapse was the absolute farthest thing from our minds.
 
On the Thursday 7 April appointment, Kara knew by the look on our oncologist’s face that he was seriously concerned. He immediately ordered a CT scan. The CT scan showed a 3.5cm mass on her right frontal lobe which was believed to either be a bleed on the brain, tumour, or chloroma which is essentially a mass of cancer cells. The CT scan showed significant swelling around the mass which was impacting the nerves that control the left side of her body, explaining her symptoms. At the same time, her blood results showed irregularities which suggested the cancer had returned to her bone marrow. Later Flow Cytometry confirmed her AML has returned and therefore the mass in her brain was likely an AML chloroma. 
 
Ellie was admitted and we had the dreaded ‘parent meeting’ with the oncology team to explain what we know and what we don’t know. It was like being back at square one all over again with information overload. The initial silver lining with her Feb 21 diagnosis consisted of two things:  that she was considered low-risk AML due to her Inv(16) cytogenetics and that she achieved remission after induction therapy. However, none of that matters anymore. She has relapsed and is now considered high risk AML. On Friday, they performed a Bone Marrow Aspirate (BMA) and had a central line (CVL) emplaced into her heart again, followed by brain and spine MRI. To us, the CVL emplacement hit home as it signals the beginning of a long and traumatic period of high dose chemotherapy and countless other medications and complications. 
 
So, what next? We’re not entirely sure and its complicated. The immediate concern is the chloroma and swelling on her brain. Our head oncologist who is normally unflappable, is clearly worried about this. “That it what’s keeping me up at night” were his words. I’ve never heard him say anything like that before. Our other reality check was when he said “last time was really hard for Ellie but unfortunately, this time is going to be harder”. It’s incredibly overwhelming to think we have a harder and longer journey ahead compared to the horrendous experience Ellie has already endured. I understand it will be longer, but part of me doesn’t believe it could be harder. Two months of non-communication, horrendous side effects of the trial drug Gemtuzumab, septic shock, respiratory failure, and ICU admission – I can’t imagine much is going to be worse than that.
 
The current dilemma is how to treat the cancer and the chloroma without damaging the brain. As I understand, our options are: intrathecal chemotherapy via lumbar puncture (LP); systemic chemotherapy; and some form of brain surgery to reduce the pressure in the brain.
 
Normally, we would treat cancer in the brain and CNS with intrathecal chemotherapy via lumbar puncture as we did during initial treatment. However, the complicating factor is the swelling and pressure on the brain. A lumbar puncture risks a rapid release of pressure which could damage the brain. Systemic chemotherapy will (hopefully) see a reduction in the size of the chloroma, reduce the swelling, and see improvement in Ellie’s symptoms. She is also being treated with Dexamethasone (a steroid) to reduce swelling. 
 
Since I began writing this, the Paediatric Neurosurgeon has reviewed Ellie’s MRI and determined they don’t want to operate just yet. I believe the reasons are too risky and not critical to commence chemotherapy. At the same time, LP with intrathecal chemotherapy is too risky. So our immediate plan is now to commence systemic chemotherapy and ‘see what happens’. Hopefully, the chloroma and swelling is reduced which will enable LP with intrathecal chemotherapy to properly treat the cancer in Ellie’s brain. 
 
Subsequent steps will depend on how Ellie responds to treatment. However, I believe the rough plan for AML relapse is 2 x high dose chemotherapy courses (approx. 10 weeks) followed by Bone Marrow Transplant (BMT). We’re told BMT will be approx. 6 weeks in-patient, followed by 12 months out-patient and recovery.
 
Bone Marrow Transplant scares us and there’s a lot we don’t know about it other than it’s a really hard time for everyone. The oncology team are of the opinion that we just get through the chemotherapy courses first, see how she responds and then address BMT when that time comes. My read of this is that BMT will only commence if Ellie achieves remission after chemotherapy. If not, then we look at plan C or D or whatever comes next.
 
Ellie is being so strong and already showing commitment to getting through treatment. She is talking, joking, and taking meds with relative ease – all of which were a real struggle during initial treatment. I honestly think she’s coping better than we are at the moment. She has matured and grown so much since 6 Feb 2021 and we are confident she will get through it again. She is more attuned to what’s going on and asking us some of the difficult questions about the future so we’re cognisant it will be a challenge keeping her mindset in the right place as things get tough.
 
We know we’re in it for the long haul now, though honestly, it doesn’t quite feel real just yet. We were so confident we had put 2021 behind us as a distant memory. It feels like the rug has well and truly been pulled out from under us and we’re back at square one with a longer and apparently harder road ahead. It’s a difficult feeling to explain.
 
We will, of course, continue to keep everyone informed. We appreciate everyone’s continued love and support.
 
P&K [...]

It’s been a big week with Ellie and Annabelle both starting a new school at St Andrew’s Catholic Primary School, Malabar. Getting back to school is a big deal in NSW as so much of the schooling year last year was disrupted by COVID and home-schooling. It’s even bigger now that they are starting a new school in which they will complete the remainder of their primary schooling.
 
I say first week of school rather than first day of school as unfortunately Ellie missed her first day due to being sick. She had a 72 hour gastro bug which wiped her out and it’s taken a little longer for her to recover, given everything she’s been through and still not being fully ‘well’. I think it also impacted her mentally as it’s the first time she’s been sick since leaving hospital. She was vomiting a lot and I’m sure her mind went back to the first 3 months of her treatment where she was constantly vomiting and febrile. We continually comforted her by telling her ‘this is not the cancer coming back, this is just gastro and will be over soon.’ But I’m sure, like us, whenever she gets sick it will be in the back of her mind, the thought that it could be something else. But she’s feeling much better now and settling into her new school (which we love) and making new friends.
 
The other big news is that 30 Jan 22 marks Ellie being 6 months post-treatment and cancer free! A huge milestone for her! During our last clinic appointment, we were also told that Ellie is now considered immunocompetent, so we don’t need to consider her being immunocompromised anymore. Notwithstanding, we’re still very cautious given the pandemic and rapid spread of Omicron. So, it’s masks everywhere and lots of hand-sanitising. To be honest, I’m not entirely convinced that there are actual metrics which define her as being immunocompetent, but more so just the fact that her bloods are ‘good enough’ and she seems ‘pretty well’ generally speaking, at the 6-month post-treatment period. Nevertheless, we’ll take immunocompetent over immunocompromised any day!
 
Ellie also recently received her first Pfizer COVID vaccine and is booked in for her second shot next week. The Sydney Children’s Hospital gained first access after the Govt opened up vaccinations to children over 5 years old and they booked in Ellie immediately. We have enrolled her in (yet another) study to determine the efficacy of the COVID vaccine on paediatric oncology patients. The study didn’t influence our opinion on her vaccination and we had always intended to vaccinate her as soon as possible. The remainder of Ellie’s childhood vaccinations will follow however, the COVID vaccine was prioritised ahead of the others. Annabelle is also booked in for her vaccination however, she has to wait a little longer for availability.
 
Today, 6 Feb 22 marks 12 months since Ellie's diagnosis which feels like a huge milestone for us. It feels like it’s been 3 years in some ways! This struck us on Australia Day when we were at the same beach as we were last Australia Day. We commented that ‘last time we were here, Ellie had cancer and we didn’t even know’. That was a strange feeling and there have been many memory-joggers of various parts of Ellie’s treatment.
 
Despite the minor set-back with gastro, Ellie continues to thrive and is settling into her new school and making new friends. She’s enrolled to play netball with Annabelle this year, and she wants to get back into gymnastics and maybe drama. We’re all looking forward to a much brighter 2022!
 
PC[...]

Today is Ellie’s 9th birthday, five and a half months post treatment and cancer free! We celebrated her birthday over the weekend with a few of her friends at Inflatable World and a doughnut tower at her request! Today, Kara made her birthday waffles in bed before she went to school (she hasn’t wanted to miss a day since going back!).
 
Ellie continues to progress in leaps and bounds with barely any signs of what she’s been through. Her energy level, appetite, and mood all appear fine, and we often say that apart from having short hair, you wouldn’t know that 6 months ago she was undergoing chemotherapy!
 
Since our last post, Ellie has been attending school every day; she started swimming lessons which she loves; we had our first camping trip away in the Barrington Tops, Halloween, her birthday, and now getting ready for Christmas. Each of these events feel so special to us and we love seeing her smiling and thriving.
 
We continue monthly check-ups and bloods at the hospital with little concern aside from a few things we need to monitor. Our team of oncologists comment every time that they are blown away with how Ellie has recovered and how lucky we are.
 
Thank You again for everyone’s ongoing love and support – we are truly fortunately to have so many loving friends any family behind us.
 
PC[...]

A lot has happened since Ellie was released from hospital on 30 July 21 and she is now 2.5 months post-treatment and cancer free!
 
We are now in a routine of only doing monthly bloods and check-ups. It is actually a very strange feeling. In some ways, the last 9 months has felt like a life-time and in other ways it feels like Ellie’s treatment went so quickly. It is still hard to believe that the worst of it is well behind us. I don’t think Ellie feels the same way; she is truly forging ahead and she’s left that 7 months in hospital behind her.
 
While having our check-up on Thursday, our oncologist asked Ellie what the worst thing about being in hospital was. Ellie didn’t really have an answer for her. I explained that I think it’s because she’s just chosen to move on and forget about it as much as possible. Our oncologist said that was understandable considering everything she has been through. She said that they often think of Ellie and speak about how hard she fought.
 
Overall, the doctors are very happy with Ellie’s progress. We’re aware that a lot of kids don’t necessarily progress well post treatment and can have several issues transitioning back to normal life with socialisation, play, schooling etc. We’re pleased to say that Ellie hasn’t experienced many issues at all, and she is thriving being at home. She is still taking a broad-spectrum antibiotic regularly and that will continue for another month. Her blood results are all fairly good, though there are some lower readings which need to be monitored and they will be looking closely at her liver function over the next few months as those readings were also not ideal. But holistically, we are happy.
 
Lock-down has probably helped with Ellie’s transition and home schooling definitely helped her ease back into things. She is now saying that she can’t wait to get back to school properly when schools re-open which, in NSW is scheduled for 25 October.
 
We have been told that we shouldn’t be too concerned about COVID when Ellie goes back to school and when she starts to socialise with more kids. We’ve been told that while paediatric oncology patients could theoretically get three-times sicker than healthy kids, most kids have very mild symptoms so the expectation is that paediatric oncology patients should be ok. They also said we should be more concerned about things like measles and chickenpox, so if there is a case in her school, we need to remove her immediately until it clears. Due to the affect chemotherapy has on the bone marrow, Ellie’s childhood vaccinations have essentially been wiped out, so she needs to have all of them again. I think until Ellie has completed all her vaccinations (which can’t start until 6 months post treatment when she is deemed healthy enough), we won’t be entirely comfortable with her in school. That said, she will be starting on 25 October.
 
Speaking of schooling, mid-way through Ellie’s treatment, we made her do the NAPLAN testing (National Assessment Program – Literacy and Numeracy for our American friends) even though we were told it wasn’t necessary as she had an exemption Ellie she wasn’t thrilled about but we wanted her to do it as a way of measuring her progress over the next few years. We weren’t too concerned about her results, given she practically hadn’t had any education all year and was obviously very sick. We were blown away with her results. Ellie scored right at the very top of the highest band across every one of her assessments! We are incredibly proud of her to achieve those results despite everything she was going through at the time.
 
Since being home, we’ve taken the opportunity to go to our local beaches every weekend. Ellie could not wait to get back into the water after having her central line removed and she is loving the beach, sun, and feeling like a normal kid again. But most of all, she is LOVING the new puppy! Chewie is almost 4 months old and providing endless entertainment for the girls.
 
PC[...]

RETROSPECTIVE Entry from Wednesday, 25th August
It's another momentous day in Ellie's cancer journey. Today she will be having her FINAL bone marrow aspiration and removal of her central line and nasogastric tube. We are so happy for her to have reached this milestone!
Paul has taken her in again for her final procedure. She was definitely a little nervous leaving the house, but we are praying for a quick and easy procedure. As she was looking around the house for something to bring with her to do while waiting I said, "Don't worry, you won't have a lot of time to get stuck into much" and she turned and looked at me and said “There's ALWAYS a long wait, Mum!", just like what a well-seasoned, hospital frequent flyer would say.[...]

Paul said it all but I also wanted to say I am so amazed at Ellie’s strength and courage in battling her Leukemia. She’s definitely kicked it’s butt! I’m so happy to have our little family back under one roof. Paul and I won’t miss having to kiss one of our girls goodbye for days on end in order to be with the other one. Ellie won’t miss being woken up to a team of 6 - 8 people pulling back a curtain and surrounding her bedside. Annabelle won’t miss not spending nights and weekends without her little sister in the house to play and chat with. And we won’t miss sleeping in a creaky roll away bed half of every week for half of a year, eating with plastic utensils, and using a single toilet and shower shared with an entire ward full of parents. The small stuff, I know....but also the reality.  
Lastly, we are so grateful for your continued love and support. You have made a difficult situation more bearable and for that we are so grateful xx[...]

We are very excited to announce that today, Ellie completed her main treatment and was discharged from Sydney Children’s Hospital!! We are over the moon to have our family back at home after a long and hard-fought 7 months of intensive treatment.
 
The entire ward’s medical staff gave Ellie an amazing (and emotional) farewell, showering her with cards, gifts, and love. They are truly incredible humans, with whom we have become very close.
 
Ellie didn’t entirely meet her blood counts for release however, given she has been tracking very well in the last week and we can see her counts slowly climbing, the team was content for her to be formally discharged from in-patients. For the next couple of months, Ellie will have weekly clinic appointments and blood tests, eventually transitioning to fortnightly, then monthly, and this will last for at least 2 years. Based on how Ellie progresses in the next month or so, she will likely have her central line removed under general anaesthetic at the same time as her next Bone Marrow Aspirate and Lumber Puncture, and this is another significant milestone.
 
We are cognisant that Ellie’s journey is not yet over, and she will remain on several anti-biotic and anti-fungal medications for some time as well as needing to have all her childhood vaccinations repeated. We need to be very cautious of her exposure (particularly in the current environment) and we understand that the slightest temperature will see her re-admitted to hospital for immediate antibiotic treatment and investigation of the cause of her temperature.
 
We are immensely proud of everything Ellie has achieved over the last 7 months and we are confident it is onwards and upwards from here. We’re eager to see her health continue to improve, her energy levels increase, and her re-introduction to school and life as a happy, healthy girl.
 
In other news, we will soon adopt a puppy Groodle (just like the one on Ellie’s card from the nurses as seen in attached photos) whom we are due to receive into our home in August. This has been Ellie’s wish from early in treatment and he (yet to be named) will be invaluable for Ellie’s healing.
 
We want to again thank everybody for your continued love and support for our family. We will continue to update you as Ellie’s residual treatment progresses, are share some new puppy pictures along the way!
 
PC[...]

Last Wednesday, 7th July, Ellie went back into hospital to commence her fourth, and FINAL, round of chemotherapy. It felt a little surreal getting to this point in our treatment marathon. We know there is still more ahead of us, but it felt pretty darn good to get to this point . And then, yesterday, 11th July 2021, at 6 pm, the nurses hung her final dose of chemo. All of the nurses and her treatment team are chuffed for her, as are we! To commemorate this milestone we made a poster today and put it above her bed. We are so proud of Ellie for continuing to fight the fight![...]

We say it over and over how absolutely impressed we are with Ellie’s strength and resilience since the day her diagnosis was made. It astounds us on a daily basis. She rarely, if ever, complains about being in the hospital or missing her home, friends, and normal activities on the”outside”. She might delay when taking her medications or stall and urge us to wait, when certain procedures have to be done. But she always does what is required to get better.  And not only her, but all the other children on the ward that we have come to know. They are so courageous and resilient. 
And following that, I am also continually inspired by all the parents and carers of children with cancer or chronic or terminal illness. I was inspired to write this poem when Ellie was in Phase 2 of treatment and it’s an acknowledgement to these parents. 

[...]

Ellie is almost 5 months into her main treatment and we believe we are past the half way point. What was originally thought to be a 6-month treatment plan now looks like it will take around 8 months to complete. This is because Ellie has taken longer to recover during phases, with the first 2 induction therapy phases taking exactly 2 months each. We therefore anticipate Ellie completing her main (planned) treatment by October.
 
Ellie is currently around half way through phase 3. This phase consisted of just 5 days of chemotherapy using high dose Cytarabine and the trial drug, Fludarabine. The first 2.5 weeks of phase 3 were relatively smooth sailing. Ellie’s blood counts were relatively high and she was feeling pretty good. She had lots of energy and we were able to explore around the hospital regularly and visit her favourite place – the Starlight Lounge.
 
However, phase 3 hasn’t been without its road bumps and as the head consultant says, “Ellie will always throw something at us that we haven’t seen before”. One of the side-effects of high dose Cytarabine is chemical conjunctivitis. Ellie was battling this over the first 2.5 weeks and her eyes were in a lot of pain and very sensitive to light. She was taking eye drops every 2 hours to keep on top of it while wearing an eye mask most of the day. That was about her only issue for the first 2.5 weeks however, we could see her blood counts dropping quite quickly at around the 2 week mark. She very quickly returned to being neutropenic over the period of a couple of days and she’s now back to being febrile daily and taking anti-nausea medication around the clock to keep on top of her nausea. This, of course, affects her appetite which will soon become a problem if her weight fluctuates as we may need to replace her nasogastric tube to provide her the necessary nutrition. It will also help with her taking oral medication as this is becoming a struggle again.
 
We are also reminded of how we shouldn’t take her (relative) health for granted and we need to remain vigilant about strict hygiene requirements. As mentioned, Ellie was feeling great for about 2.5 weeks while she had a decent level of neutrophils. Then as soon as they dropped, she tested positive for another infection. This time it’s a blood infection - Enterobacter Cloacae. Thankfully, it’s a relatively mild infection, which is sensitive to the two antibiotics she was intuitively treated with – Gentamicin and Cefepime. However, there was a period of time where the doctors couldn’t confirm that she didn’t have a much more serious infection - Carbapenemase-producing Enterobacterales (CPE), which can’t be effectively treated by antibiotics and has a high mortality rate. This reminded us just how sensitive Ellie’s situation is and how careful we need to be.
 
Despite her ups and downs, Ellie is doing really well, all things considered, particularly when we compare with what she has already been through.
 
As we pass the half way point, Ellie has had 19 weeks of treatment, 16 weeks living in hospital, 32 blood transfusions, 23 days of chemotherapy, 5 intrathecal chemotherapy procedures, 10 surgeries (procedures), 4 days in ICU, and 6 infections.
 
One thing that stands out to us is Ellie’s reliance on blood products. They are literally keeping her alive. Kara and I have never given blood before and that’s about to change. We have registered as blood donors and my first appointment to donate is in about 2 weeks. We’re really looking forward to being able to give back, particularly now that we have first-hand experience and understanding of just how critical it is for people like Ellie.[...]