Ellie Has Relapsed

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