Help for little Charlotte
My names Nicole, I live in Rosebud & I'm a mum to 3 girls, 9, 7, 4 & a partner to Brendan.
My 9 year old daughter Charlotte was diagnosed with a brain tumour back in October 2016. Our warning was a Grand Mal seizure on the 16th of June 2016. A day of great uncertainty as we watched our daughter lay unconscious, grey, foaming from the mouth and fitting before us.
She has undergone MRI's, EEG's, lumber puncture, infectious disease testing, before the biospy in Sept 16.
Diagnosis of a rare brain tumour called an Angiocentric Glioma came back. A low grade BT. IF it was small enough to remove it would have come out and this journey may have just been a series of follow up MRI's. Her tumour was too big, located from her parietal lobe - frontal lobe. And would leave her with deficits as it was in areas containing her motor/sensory pathways, then said to be inoperable.
More MRI's, then our Chemotherapy path followed. Jan 17 her port was installed and the week later we began her protocol. 1 x weekly for 10 weeks, 1x weekly 3 weeks on and 3 weeks off till October, when it stopped because it wasnt working. In that time she had blood and platelet transfusions & numerous trips to emergency for temperatures, neutropenia and another couple of seizures. With even a few admissions to the cancer ward in the Royal Children's Hospital, where she is being treated.
November 24, 2017.... a brain resection, her tumour had changed appearance, it had grown nodules. Sent off to Boston, not alot of info came back and we were unaware what this demon was.
2018 has been a little quieter, Feb MRI, April PET MRI. More changes in tumour. And told she had been diagnosed with a High Grade Glioma unrecognised by WHO. On May 3rd, 2 days before Charlottes 9th birthday, she underwent another resection. 2 weeks later we were set to begin 6 weeks daily Radiation and an oral chemotherapy as her BT was now a grade 4 & looking more like a Glioblastoma Multiforme. A hideously deadly CANCER. Charlotte had one dose of her Radiation at Peter Mac in Melb & on the way home had another seizure. Taken by ambulance from the side of the FWY back to RCH.... huge Grand Mal seizure that went for almost an hour, another small one, CT, MRI..... Our whirlwind journey begins again.
THIS IS OUR NEXT STEP, the step everyone has been trying to avoid.
Charlotte will be undergoing her next surgery on Tuesday 29 May. Our surgeon is preserving her frontal lobe and an area at the back, optic?.
To give her any chance at some type of survival, she will wake up from surgery left side paralysed (torso and all), droopy faced, loss of peripheral vision, be tube fed, cathetered and feeling extremely poorly. We will be in hosptial for the good part of 3 months. She will begin radiation and chemo on her good side of brain, which could make relearning things a little harder. Rehabilitation will come in when she is stable and feeling better.
The hardest decision made to date, no one should have to go through this heartache.
She will still be our crazy fun loving Charlotte, but will be functionally different.
Im so scared of whats to come and how we are going to cope mentally and financially. Our family is going to have to be separated for some time while we focus of Charlotte. I cant bare to think about not seeing my other girls everyday and the emotions that will come from me not being around with their big sister. My partner will have limited days to work to provide for his family as he too will have to spend time up at the hospital helping and learning how to help our girl.
If anyone can please help in anyway by contributing to our GOfundme page. We would be forever grateful. Anyone that knows me, will know how BIG this is for me to ask for help.. It's not something I'm very good at.
Thank you for reading & your time. Nicole X
#teamCharlotte #braintumour #findacure #anythingtohaveyou #childhoodcancer #fucancer
Sending preyers, every parents worst nightmare, im so sorry this is happening... I dont have the money right now to donate but i do have time, and skills... i can babysit or clean (ocd style clean) wash clothes) whatever you want or need.. i have working with childrens check and police check...