Jocelyn (Amy, Jacinta and Jossy)

Amy – ‘A week ago I decided I was going to shave my head to raise funds for DIPG [Diffuse Intrinsic Pontine Glioma] cancer. It’s something I hadn’t heard of until recently. I thought I would give myself a week to see how close to $10,000 I could get. I just checked and we’re up to $4,300 and I’ve had some beautiful people donate. One of our friends only started a children’s playground business 2 months ago and they did a huge donation of $550. Her little girl has Alopecia so I will donate my hair to the Alopecia Make A Wig foundation.

 

May 24 this year I was studying and saw Jacinta’s name pop up on my phone and ignored it (laughs) but then she called my husband and I saw his face drop when he answered. They had found a mass in Joscelyn’s brain. Jacinta and I met when I first moved here just before Year 7 and we moved in next door. It was just after Jacinta had lost her Dad. We’ve been best friends ever since. She’s always been so tough so I knew something was really bad.’

 

Jacinta – ‘Joscelyn is 13 years old, 14 next February. For a few weeks she was off balance and had double vision, bumping into furniture and tripping over at school. She ran into the door one night really heavily. She sat on the floor and said, Am I going to die? Initially we thought she was low in Iron or low blood sugar. The blood test didn’t show anything really and the doctor suggested an MRI. They did the MRI and the Radiographer called me over and said…It’s not good. They’d already called our GP so we raced up to Alstonville Clinic and the Doctor told us what it was.’

 

Joscelyn (Jossy) — ‘On the way to the doctors Mum was crying and she was trying to hide it. I said, What’s wrong, why are you crying Mum? She said, Because the MRI people said it’s not good. I said, She’ll be right..It’s not a tooomer (in a deep Schwargnegger voice). Ironically that movie, Kindergarten Cop, was playing a week later from my hospital bed.’

 

Jacinta – ‘The doctor sent us up to the QLD Childrens Hospital straight away. The traffic was so bad and we only just got there in time to see the Specialist. A few people met us there. They told us that it’s a DIPG which is at the base of the brain stem. I had a consultation with Charlie Teo a week later and he said he could tell what it was without having to do a biopsy which they did anyway.’

 

Jossy- ‘I’ve had radiation every week day for 30 days but the weekends were off so we could come back here. We stay at the Ronald MacDonald House while I have the treatment. I got so tired I had no energy so we had to get a wheelchair so Mum could push me. I would vomit every time and I would vomit all day. They can’t do it again for 6 months so if it grows they can’t give me more radiation. They can’t do Chemo with this cancer. It sucked some days, I would have to lie down because I was so dizzy. I’ve got a headache today because I feel a bit yuck.

 

Jacinta – ‘I can sort of fill you in on what I know about DIPG and Jossy knows all of this. Diagnosis from what the Doctors tell me is no good but jumping down the rabbit hole and finding that their are children who have had this for quite a long period like 7 years past diagnosis. Joscelyn doesn’t know the time limit the doctors have given her. She’s chosen not to know that. Usually only 20 children a year in Australia get this type of cancer. I’m in a WhatsApp group with Australian families who are dealing with this and unfortunately in the last 2 months three have passed away already. With DIPG you have scans every 3 months and they will tell you if it’s stable or if there’s progression and usually not regression. I’ve got Joscelyn on every treatment possible to create regression.’

 

Joscelyn – ‘I’m basically traumatised by spring rolls. I’m on a restricted Methionine diet not that spring rolls are really a part of that but they were vego and felt a bit like a treat but I hate them now, I had so many and they are disgusting. I’m also traumatised by macadamia nuts because they make the most yuckiest vomit ever.I don’t think your readers need to know this but it was so gross. I love watermelon and rockmelon. I really love basgetti bolognese which will be good when I can actually have it. My fave is my Mum’s chicken and leek soup but I can’t have meat and I also can’t have sugar.’

 

Jacinta – ‘There is a Professor Matt Dunn who lost his daughter Josephine to this same cancer. He has a long list of degrees and he grew up in Casino. He has his daughters brain in the lab where he works because he is trying to find a cure for it. I called him and he gave me so much advice. Methionine actually feeds this type of tumour so he suggested the diet. I’ve done so much research and have learnt way more than I ever wanted to know.’

 

Joscelyn- ‘I love drama. I do it at school (Alstonville High). I have just gone back on a Thursday and I really wanted to see my friends. My friend Piper said to everyone at school, Jocelyn’s coming back tomorrow so if anyone goes near her, I’ll bash ya!! She was just joking, she would never do that. We are good friends. If I go to school I have to sleep the next day. I love colouring in. My Mum is an Artist and my brother Sully is really artistic too. There is maybe a boy who is a bit special. He already knows. When I was in hospital and being a bit crazy on steroids I rang him and said, I love you and he said, I love you back.

 

I also have a bee hive. One day they swarmed and I got my brother to climb this really high tree. I gave him a saw and he cut the branch off. Sully’s fearless! The weirdest thing is I was close to the bees and one got in my hair. It actually bit me on my biopsy scar on the back of my head and it really hurt. That biopsy day was a bad one for me. I was vomiting and lying on the bathroom floor. Mum got me a pillow and blanket and I was sleeping on the bathroom floor. My friends had come to visit me that day and I was too sick. It was actually a relief to be knocked out for the biopsy. When I was in hospital one side of my face was droopy and they could see the tumour looking through my eye pressing on the optic nerves but the last test they couldn’t see it.

 

I reckon I’m going to smash this thing. I have lots of people praying for me and sending healing thoughts. I talk to my tumour and say…Go away! I don’t want you. I get super angry with it and when I’m having radiation I swear at it inside my brain.

 

We have a holiday in October to Salamander Bay. We get to invite 12 people so I want my cousins and Aunties but no babies because we want a stress free holiday. I’m happy if everyone else is happy.

 

Jacinta – The last scan was 3 weeks ago and they mentioned that the mass had shrunk to 50-60%.

 

Jossy – ‘I think radiation helped that but Mum has me on all these herbs, Herb Robert tea and my special diet, apricot kernels, flax seed oil, homeopathics, CBD and THC oil plus me telling it to get lost. It all helps I reckon.

 

Jacinta – Alstonville Bowling Club did a fundraiser on Sunday and they raised close to $11,000 for Joss. This is to cover medical, holiday, whatever. There was a fundraiser a few months ago by the Boulevard Bikies and they took her for a ride and they gave me a bike to ride. They rose $4,000. She’s been given tickets to Luke Combs and he gave her his Pick. She got to toss the coin for the AFL for the Brisbane Lions which was televised and she met the QLD State of Origin team when they came to the Ronald MacDonald House.

 

(I commented on Jossy’s beautiful green eyes saying it’s quite rare to have green eyes. She replied…Yep and this cancer’s rare too, I’ve got it all (laughs). What a little trooper.