Growing up
23 July 2018
It’s been over six months since our last update and there’s so much to share.
Elliot is amazing, that’s a given. She’s been on dabrafenib (targeted gene therapy drug) oral chemo for one year. And six weeks ago she started a second drug (trametinib) to accompany this first one.
Getting these drugs into her is hard work. They are both oral drugs and administered daily around a period of fasting (2 hours after food and one hour before) which is hard for any toddler.
Thanks to the DHB and our oncology team for sourcing these drugs for her - they are not funded here in NZ but cancer kids get some exceptions and we are very grateful (if indeed they work their magic).
In April she had an MRI scan that triggered these changes in drug regime. Although parts of Eugene (her tumour) are responding to treatment, other parts are not and the hope is that the new drug will get things under control and slow/stop growth.
A drug side effect has resulted in her hair turning into this incredible mop of gorgeous tight ringlets making her look like a tiny Janet Frame. Also this improves her chances of being the cutest ‘little old lady’ as her Halloween costume (add string if pearls, blouse, cardi, spectacles and her tiny Zimmer frame). It’s going to be amazing.
She’s still not quite walking unaided hence the walking frame and is taking various therapy classes weekly such as swimming, physiotherapy, and music.
Her hypothalamic obesity is an ongoing burden for her too (thanks to Eugene’s placement in her brain) so she tires easily when physically exerted. Try bring two and having to carry around the weight of an average nine year old. Exhausting.
Couple that with a prominent right sided weakness (not using her right hand and arm for much more than bashing us). Actually this could be a strength.
But there are so many things that she does every day that give us such hope and fill us with glee: she’s very cheeky and playful, and loves music with such a fierceness it’s infectious. Her language is developing and words keep coming. And she thinks she’s pretty humorous - it’s not unusual to encounter her cracking a joke to herself, accompanied by a good dose of self reviewing, “funny, funny, funny.”
She loves her sister and her sister loves her so fiercely too. She wants to “hold it” when she encounters smaller children and babies. When she reaches for you and says “cuddle” or “come here” it’s pretty much impossible to resist. She’s started saying “always” which is my response to any cuddle requests.
Although now daddy is her favourite - as of six weeks go mama has returned to full time work and Elliot is lucky enough to have daddy full time at home with her. And she gets a weekly visit and play with her favourites Jim and Bobbin.
She’s managed to avoid another brain biopsy for now - another hole in her head was not something we were looking forward too. And in just under two months she will have another MRI. Fingers crossed and medical science and all that.
Thank you to everyone who has supported Elliot and our wee whānau.
Aroha nui.