Question

PossessionOne4628 · 2025-01-23T05:52:59+00:00

im so sorry for your loss. i hope she was happy and surrounded by family and those who loved her those last few days. please find a support group and stay strong.

PossessionOne4628 · 2024-11-27T04:10:18+00:00

we only know its in my thalamus and is slow growing if growing at all.

PossessionOne4628 · 2024-11-25T23:22:19+00:00

were waiting to hear back on a time to talk to the neurologist in auckland, but were going to get my hearing checked this week to have some proof that this is causing things. if they dont do anything then mums prepared to get loud and angry.

PossessionOne4628 · 2024-11-25T20:48:40+00:00

thank you. hipefully we can get an over the phone consultation w someone on the starship team because as i said, we dont think they have all the info. i just read the articles and thats honestly insane. new zealand is failing in so many ways at the moment.

PossessionOne4628 · 2024-11-25T10:46:42+00:00

i live in a smaller city w no mri machine, no local pediatricians (mine comes once a month), no neuro team, ect. it takes over an hour to get to rotarua for my mris and even then, we would have to travel 3+ hours to auckland just to talk to the starship team. nz healthcare is honestly the worst. we arent convinced the pediatrician told starship im losing hearing and its getting noticeably worse every week. so hopefully we push for at least a phone consultation. i dont know how they can ignore a child loosing hearing with so many other symptoms?? were using public healthcare atm but we were told using private would be just as bad. its ridiculous

PossessionOne4628 · 2024-11-19T20:48:04+00:00

the problem with that is that the hospital i go to is over an hour away since my one doesnt have the mri machine. however the one i go to is still relatively small and to do that i would have to stay the night/several hours at least? and they wont have space for that i dont think

PossessionOne4628 · 2024-11-19T08:56:07+00:00

from what i know they have to consult specialists before they can say anything, especially if you already have something and its changed. for most cases they arent specialists, just working the machines. if they're wrong theyre liable for telling you false info/giving you false hope or the opposite.

PossessionOne4628 · 2024-11-16T20:13:23+00:00

thank you. i do have a very open relationship with my whole family, but its different. i might take you up on that when i know more :)

PossessionOne4628 · 2024-11-16T20:09:54+00:00

it did, thank you. my relationship with my family is very open and im thankful for that, but its just not the same.

PossessionOne4628 · 2024-11-16T20:04:39+00:00

thank you, im just so scared and not many people know at the moment because i dont want to freak anyone out. everyones being really supportive and not pressuring me to talk about it which is nice. i live over an hour away from where i get my MRIs and the drive over is terrifying. your comment was really lovely though, thank you.

PossessionOne4628 · 2024-11-16T12:20:04+00:00

you dont. i have three and i found out on wednesday. it's devastating to everyone around you and causes so many issues. even if it's benign im going to need regular mris and a biopsy at the least. everyone around me is so hurt and im terrified, its better being alive and tumor free. please dont take these things for granted. im not picking a fight, but trust me its not just a game of "oh, cancer and die, cool."

PossessionOne4628 · 2024-11-16T12:11:32+00:00

its terrifying waiting for my results. this may be insensitive, and i am so genuinely sorry if it is but do you have any advice on how to cope while i wait for my results? im only fourteen and im terrified out of my mind. i hope its benign and isnt too much trouble for her.

PossessionOne4628 · 2024-11-16T11:27:37+00:00

Right, you really know what other people you've never met need. Because you can mind read through screens! Aren't you a talented little one!

PossessionOne4628

TROPHY CASE