“Lillys seizures were relentless, trapping her in her body. At bedtime as she was as she was falling asleep and all the nerve endings in her brain were firing off, Keeley likened her to a fish out of water and there was nothing she could do but watch her.”
I have this cousin, Keeley, that I grew up really close to. Our mums are sisters and with just a few years between us, our childhoods were tightly knitted together. We had a lot of time with each other.
Mostly I pretended she was a real pain in the ass but really, I loved hanging out with her, teaching her bad habits & being the ‘older cousin’ that introduced her to things she probably didnt need to know about. We had fun. We looked after each other and as we grew up, the age gap closed and we became friends and then both became wives and mothers.
She married this great guy, moved onto a farm, became an awesome step mum and introduced a daughter into the world. I was proud of her. Things were good and stable and progressive.
Then in August last year my mum called me and before answering the phone I instinctively knew something was not as it should be.
She was calling to tell me my Keeleys daughter, Lilly, was in hospital.
She had started having seizures. There was a brain tumour. They were waiting for further information.
Lilly was 2 years old.
I know enough about childhood illness to be affected by it but only from a distance. Ive read the stories, heard the tragedies and been left broken hearted for the families surviving it but I never imagined it coming so close to me.
I suppose you never do.
I couldnt imagine my little cousin pacing round a hospital waiting on the news of whether her child stood a chance or not.
Trying to convince herself that her daughter would be fine while fighting the urge to break down completely because what if shes not?
Our family was so fortunate that her prognosis was good.
The results came back that Lilly had Ganglioglioma (later, pathology diagnosed Angiocentric Glioma – A “low grade” tumour only ever seen in NZ in 2 others cases).
It was rare but operable, not easy, but hopeful.
Now it became a waiting game. Living so far away, I felt so helpless & disconnected.
The family lived in limbo with this illness they couldnt pronounce with Lilly on high dose anti seizure medication that they also couldnt pronounce – just waiting for a date for her surgery.
They were in this surreal existence where they were just meant to “carry on as normal” despite that everytime she looked at her daughter, Keeley saw the tumour like a flashing neon sign above her head.
She tried to remain positive but – Its still brain surgery on a 2 year old. The prognosis is good, but this is still terrifying, unknown & unpredictable.
Lillys seizures were relentless, trapping her in her body. At bedtime as she was as she was falling asleep and all the nerve endings in her brain were firing off, Keeley likened her to a fish out of water and there was nothing she could do but watch her.
As her seizures got worse and worse, the urgency for her surgery became greater and greater and by October the family found themselves en route to Starship hospital in Auckland.
They were homed in Ronald McDonald house for the time they needed to be there.
The night before her surgery, Keeley asked the surgeon all the hard questions. Wanted to know about all the what ifs. The best & worst case scenarios. The risks to her brain functions then, the following day; Lilly was under anesthetic for 6 hours while the surgeons worked to rid her of her tumour. To prevent any damage to her eye site, it was unlikely they could remove it all.
When she woke up in recovery, it was best case scenario. It had gone well. The surgicial team had taken the care to plait her hair & draw a mickey mouse picture on her bandage. They really cared for their precious little patients.
Nearly a year on, Lilly is an adorable, lively wee diva. She is brave. I got to chat with her and hold her little hand. She helped her Nana in the kitchen. She talked about “Aunty Pizza-sue” and I said “oh thats my mum” to which she stubbornly disagreed in typical pre-school foot stomping fashion. She ran amock with Abel, they adventured around the house and set off toy bombs in every room.
The medication she was on post surgery brought on some extreme behaviour – mood swings, hyperactivity & self harm but now that she has been weaned off it, as far as recoveries go, hers is as good as we could hope for. She is thriving. Things are good and stable and progressive.
With so little research to go on on her particular tumour, we proceed with caution.
2 cases in NZ prior to Lillys.
1 case required a second surgery for signs of tumor regrowth and 1 didnt so, we proceed with positivity. We are grateful.
Throughout all the emotions, all the ups and downs – Keeley & her husband remained openly positive about the care & support they received from starship hospital & Ronald Mc Donald house. That lose change you part with after paying for your big mac combo really does go somewhere. It goes into providing the care and support needed for our vulnerable kids and their stressed out families during times of crisis and uncertainty.
In the coming months, Keeley will be launching a fundraising campaign on her page Tutus & Tumours – selling tutus for Ronald Macdonald house and the organisations that helped her.
Brave wee Lilly is my hero of the week, along with all those who supported and helped her on her journey.