We were so excited and delighted when our son and second child, Joseph McHarrie Quilliam, was born on the 17th November 2017 via a distinctly un-complicated elective caesarean. We named him after his paternal grandmother, one of the strongest people we know. He came out calm and quiet - he barely cried and was quickly snoozing in our arms. We brought him home, and still he barely cried. We used to call him Squeaks because that was pretty much the only noise he would make.
Joey was always snoozing. As time went on, milestone achievements barely happened. He rarely smiled. He failed to maintain his weight properly.Four months after he was born it was obvious something was up and, after a week and a half of uncertainty in the hospital, it transpired that this laid back baby was possibly only this quiet because he had more important things to be getting on with - like dealing with an energy-sapping cancer.
Joey was diagnosed in March 2018 with an extra-renal (meaning outside of the kidneys) rhabdoid tumour (ERRT). The cancer had also already spread to his lungs and lymph nodes in such a short amount of time, thus demonstrating how aggressive and rapid-growing this type of cancer can be. Our consultant advised treatment but didn’t give Joey good odds of survival.
Initially we were successful - Joey responded really well to the chemotherapy he was having. So much so, he actually became a different baby. Having been fairly sleepy and quiet beforehand, he quickly started laughing and becoming interested in his world once treatment had started. Over the following months we got to learn more about who he was and we were struck by how strong and willing to be joyful he was. Joey was calm, calming to others and he carried an aura which we sensed to be wise beyond this world. It was impossible to not see how much he cared about people. He was always smiling and gurgling and looking satisfied and delighted when you returned a smile as if that were his goal all along.
Joey felt magical. It felt against the laws of this physical world to feel so uplifted and happy in his presence whilst witnessing his battle through cancer and dealing with the prospect of losing him. Regardless this is how he made us feel throughout everything; strong, happy, lucky and calm. Joey was the most positive spirit we have ever come across. He would smile through even the most difficult of times and, when he was well and able to feel himself, his laughing and smiling would be ramped up to an infectious level, where his positivity and happy vibes would exude from his little body and cause a ripple effect of happiness to all he encountered. So much so, that on the hospital ward he became known as the boy who laughed through chemo.
After 3 months of being in the hospital, Joey’s primary tumour was removed which meant he could then add radiotherapy into his treatment regime. This was a huge milestone for us, as we were warned at the beginning that it was highly unlikely we would get this far. However, a month after radiotherapy began, it not only became clear that the secondary tumours in his lungs had started to come back, but they had come back with such ferocity that treatment was rendered useless. The fact they had managed to do this during a time where both chemotherapy AND radiotherapy were being administered really demonstrates how difficult this type of cancer is to get rid of and why it is so important for more research to go into treating it.
To our great sadness, Joey died in September 2018 - 6 months after starting treatment. The disease in Joey’s lungs was just too strong for the current treatment available for ERRT. There is no specific treatment for this kind of cancer - the one available is borrowed from the treatment of another kind of cancer, for want of something better.
Rhabdoids are extremely rare forms of cancer, mainly affecting 0-5 year olds. The cancer can learn to evade whatever treatment is currently available and because of how aggressive it is, children with rhabdoid tumours often have poor outcomes. Due to the rarity of rhabdoids, there is relatively little research done to find a cure.
We have therefore set up this fund with the help of Grace Kelly Ladybird Trust to try and help finance much needed research towards rhabdoid tumours and how to treat them in the hope that there comes a day where the odds of survival are more favourable. Thank you for any contribution you feel you can make towards this cause.
For more information on ERRT please see the GKLT rhabdoid publication links below.