Merlin's Continuing Quest

When Merlin was diagnosed with Acute Lymphoblastic Leukaemia on the 10th of the 10th 2016........I'll never forget that date..........it was such a shock. In all ways. Right back in the beginning, a beautiful nurse who we ended up calling Mary Poppins, because of her similarities to that fantastic woman, told us that our lives would never be 'normal' ever again. But that eventually we'd get used to all the new things and worries and safety procedures needed, and find a New Normal. In the beginning I wondered if we ever would, but this far down the track I know she was right.


Still. In the beginning it was intense. We're fortunate to have an amazingly beautiful and talented photographer friend, Michelle Eabry, who has been taking photos of our family for a while now. When we'd been discharged from hospital, but had to stay at Ronald McDonald house till we got the all clear from possible contagion of chicken pox at home, she came up to visit and took some photos of us. You know how they say that photos speak a thousand words? I think the photos she took that day speak volumes.......


I couldn't even look at these photos when she first sent them. It took a little while for me to even show them to Currawong. In fact it was just the other night that he first saw most of them :) Just brings me right back there.


We were incredibly fortunate to receive lots of love from all over the world, along with a whole bunch of amazing toys, letters, cuddly creations, and things to do. Not to mention a whole bunch of love, support and action from Nimbin, with people taking over our roles back home effortlessly. In the beginning shock of this path, a dear friend I met virtually in America, contacted thousands of Wiccans to send positive energy from Mother Earth, as well as her Christian Evangelical friends on FB, praying from NC.


In the time since I last wrote, we've experienced a few side effects, like having an anaphylactic reaction to Peg Asparaganaise, when 30 emergency staff were there in the beat of a heart, and a nurse we love was on hand to give him a shot of adrenaline to his thigh. This photo was taken moments before he started having a reaction, and in hindsight you can see that his lips are starting to swell.

Spiral-Moon has become his 'chemo buddy', and takes time off the hospital school to be with him on the long days in 5c, and help pass the time. She's learnt so much in her time with him, and made so many friends in the process, that she's almost got an official fan club! We've all learnt a lot through this process.


And then we had his wild reaction that lasted for weeks, and a wierd rash that spread, and changed, and he finally started to lose his hair. That was really confronting for me.

Up until then I'd almost been able to forget for a moment, the battle we were waging with his body. Looking at him, with his gorgeous long blonde hair that he loved so much, and the plait that snaked down his back, was a connection with the past. The past before leukaemia. When it finally went, it happened in a matter of days, after a long and slow thinning. It was just gone. And every time I looked at him, I saw all the other photos I'd seen in my past life, of kids with cancer. And every other kid that we saw in the hospital.


But then that became part of a new normal too.


There's phases and protocols for the treatment of leukaemia. A standard procedure that is performed. And they're fairly self explanatory. First there's Induction, then Consolidation, then Interim Maintenance, then Delayed Intensification, then Interim Maintenance again, until the last and longest phase of Maintenance, until the treatment is over, 3 years in full.


Since we first learnt about it, Delayed Intensification was a worry and anxiety. His reaction to Peg and losing his hair, was his first step into the two month process. And it was completely Intense as it's name suggests. In one day he got four doses of different chemotherapy. Orally, intravenously, in a lumbar puncture, and through a cannula in his thigh.


I got shown very efficiently and effectively how to administer chemo through a needle into the cannula in his leg, and sent home with as much hospital supplies as I needed, to perform this intense ritual at home.



We went from knowing the staff on 11b as inpatients very well, to knowing the staff around 5c as outpatients just as well. Especially when we had the allergic reaction to Peg Asparaganiase, which meant that instead of getting the one dose for his protocol, he had to have six doses of Peg Erwinia instead. Each dose took a full day in hospital, from 8 in the morning till sometimes 8 at night, and he had a mild reaction to that one as well, which meant another short stay in hospital. We got to know more parents, and caught up with others that we'd met on the ward, and got to know a whole new bunch of nurses and staff, who were just as amazing, compassionate, and delightful in every way, as all the other people we'd met. I really can't come up with the words to truly describe the amazing dedication and huge empathy they have for all they encounter.


Our Oncologist, the lovely Morag, warned us that during Delayed Intensification, we'd most likely end up in hospital for more blood transfusions, and so we were prepared for our next stint in hospital. It had been long enough since we'd stayed on 11b, that we almost missed it! I had to giggle at myself quite a few times during our stay, because it almost felt more like a social outing than a hospital stay! Everywhere we went, it was "Darling! SOOO good to see you again, but not that you're here, but I've missed you!!"


Merlin was a lot healthier, despite the Intensification bit, than he'd been when were staying the first time, and it was like he fully embraced all the people and resources available to him. His nurses were totally charmed, we got 4 visits in one day from Starlight Captains, and he got this yellow chick from a basket full of Easter eggs and toys being hefted by a massive policeman, who came with his colleagues to brighten the day of the patients. Merlin called him Peck, and I giggled myself silly watching the Starlight Captains improvise around this wild little boy wielding a yellow fluffy chick and only saying "Peck!", and pecking them with his toy. There were chicken dances and languages, and all sorts of antics that would have made any Theatre Sports devotee proud.


The biggest thing that struck me through this process, was how much better he was getting with all his treatments. Like I noted on facebook at the time...


"I know there's a multitude of stories about cancer, and chemotherapy, and the modern pharmaceutical model, but here is a little part of mine.


Taking a big wide perspective on this whole Leukaemia business........and given the ins and outs of our experience so far, and the humps in the road and the great high thorny goat tracks............the more chemotherapy and transfusions Merlin has had, the healthier, happier, and more vivacious he's got.


I almost feel like I'm meeting my son again, after he was very slowly drifting away from us for a long time, creeping towards lethargy, inertia, and eventual demise, before it all came to the diagnosis and swift extradition to Brisbane. And the more treatments he gets, along with our alternative approved supplements, the healthier, happier, more outgoing and exuberant our little Merlin gets. His cheeky sense of humour and wicked little grins are more brilliant the further we go, and I realise there was this lively little creature of fire getting slowly doused for a long time leading up to this.


So tremendously greatful that all of this was here to catch us and help us help him..........."


As well as all the treatments, modern and alternative, and the love from all over the world, I've been becoming more aware over the last couple of days in particular, about the furry healing he's been getting from our cats.


Now our Merlin has always loved his fluffy creatures, from rabbits and pet rats and dogs and chickens to cats. I think cats have always been his favourite.


When we were in hospital for our long stint, he wanted to see the photos of our cats, and I almost think he was more keen to get back home to them, than to anything else.


The very first thing he did when he got home, before saying hello or looking around the house so new to him, was to find Tubby Bear, who happened to be in the bottom of a closet, and cuddle him. Lilly and Spiral, who's room he was in, scrambled to get him cushions to sit on, and he came home through a cuddle with his favourite cat.


I told him when we were in hospital, that maybe when we got home the cats would hang out in his room to keep him company, but I didn't really expect it to happen.


But since we've got home, Tubby Bear in particular has taken to setting up permanent camp in his room, either on his bed or near it. And either Merlin finds them, or they find him, but more often that not, there's a cat in his vicinity.


I thought it was all a bit cute and incidental, until just the other day, when Tubby Bear had a bit of timeout from Merlin's room, and Dreamer moved in to take over the shift!



And then I watched this video, and it confirmed to me what I'd been suspecting, that the cats had really taken a strong healing role with Merlin. Yeah, I know Xena's a dog, but it's definitely connected.


Lilly and Spiral told me that they'd watched a documentary about the healing nature of cats, so I went on a search and found this.



I find it utterly fascinating that there's such a connection between bone healing and cat purrs in this situation, especially as leukaemia is a cancer of the blood and bones..... I also found this.


So all in all, and with all the help and love pouring into our family from all sort of places, and maybe particularly from our cats, Merlin continues to heal and thrive.



I posted this photo the other day, with a reference to cat therapy, and some of my facebook friends had some amazing stories to tell about their healing experiences with cats as well.

Hellena Post
Fibre Artist & Flowmad
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