Dear family and friends,

Please help raise funds to give me the gift of my lifetime - a beautiful glass photographic portrait of myself by world-renowned portrait and fashion photographer Robbie Merritt - and support the work of an incredible local charity - Cancer Support WA.

Please show your support by sponsoring my portrait.

Thank you

Jayden & Leisl (Jayden's Mum)

Jayden's Story

My name is Jayden Stone and I am three years old. When I was 20 months old I was diagnosed with an aggressive brain tumour known as ATRT (atypical Teratoid Rhabdoid Tumour).  Before I was diagnosed, I was very sick all the time and my mum took me to Fremantle hospital many times and to many doctors, paediatricians, naturopaths, you name it, to find out what was wrong. No one could give her answers. Finally on the 8^th of March 2012 my mum took me to PMH hospital in the middle of the night after I had been vomiting every hour, the doctors did a CT scan and found a tumour 3cm by 4cm big in the back of my head, (Posterior fossa). It was very scary for me and my family.

From that moment on I didn’t leave the hospital to go home for a long time, that made me very sad as I missed my brother and sister very much. Every time they came to visit I cried because I wanted to go home with them. Three days after the CT scan I went into surgery and had the tumour removed from my brain. It was very scary and I didn’t want my mum to leave me when she took me to the surgery. The surgery took a very long time, 8 hours. I woke up in ICU and was very scared. I couldn’t eat, as swallowing was difficult and I had lots of tubes coming out of everywhere and lots of machines around me. I was very frightened. Not long after being there I returned to the wards and I got very sick again. This time I had a very nasty strain of meningitis. I lost a lot of weight because I couldn’t stop vomiting and I couldn’t move in my bed because it was too painful. Bed sores developed on my ears and head and I lost the ability to walk. Everyone was worried. I stayed on that ward for nearly 2 months.

Soon after I was moved to ward 3b where the doctors had to start giving me chemotherapy for my cancer even though I was still recovering from meningitis. I had to have surgery first so that they could insert a broviac line for the chemotherapy to be injected into. (A BROVIAC catheter, is placed directly into a central vein, in my neck and then proceeds to a position just above my heart). The chemotherapy made me very ill and it was all very scary. Mum and dad had to wear gloves when they changed my nappies so they would not be exposed to the chemotherapy that was being injected into me. I soiled my nappies often because of the chemo so changes were very regular. And they had to wash my mouth regularly so I wouldn’t get bad mucositis . The chemotherapy made me very sick, I would vomit up to 15 times, sometimes more a day. I lost more weight and I still could not walk.

After two months of chemotherapy my family and I flew to America so that I could receive proton Beam therapy treatment. It is a much safer form of radiation that will leave me with far fewer side effects than the radiation they had in Perth. It was really nice to be back with my brother and sister again as I missed them a lot while I was in hospital. The first night we sat together at the dinner table was the best night we had had in a very long time. We stayed in America for 9 weeks together while I received proton beam therapy. Every morning Monday to Friday my family took me to the centre where I was anesthetised and given the radiation. It was very scary at first and I was very frightened to go into the big room where I was injected with stuff that made me go to sleep but after a while I got use to it and wasn’t so scared. The treatments didn’t take long so when I woke up I was able to spend the rest of the day with my family. We did lots of nice things together there and I learnt how to walk again. In the last week I got an infection in my blood which they thought was in my broviac line so I had to stay in hospital for 10 days. That wasn’t very nice as I missed being with my family together. Mum or dad always stayed but my brother and sister can only visit.  

When we returned to Perth we had to go back to hospital for me to have chemotherapy again. Another Broviac had to be inserted for the chemotherapy. This was even yuckier chemotherapy than before. This time I had to also have a catheter inserted because the when I weed the chemotheraphy could burn my skin. In the beginning of each treatment I also had to be bathed every 4 hours which included through the night when I was sleeping. I didn’t like being woken up for that. As my blood counts dropped I had to be injected every day in my leg with stuff that helped make my counts go back up again. When they got to a certain point my stem cells were put back into me that they collected before. This was to help me recover quicker. It was really awful and mum and dad were very unhappy about it too. We were supposed to do three rounds of this type of chemotherapy but we could only do two. I got very sick in the second one and mum and dad were too scared to put me through another, I was very relieved about that and very happy to come home.

After a while I was able to have my broviac removed and for the first time in a long time go for a swim. And once I started eating again I also had my nasal gastric tube removed and for the first time in a lone time I was able to swallow without a tube through my nose and down the back of my throat. It was really nice to be home and be normal again. I love being with my brother and sister and in my own bed (well, mum and dads).

My treatment stopped in October 2012 and every 3 months I have to go back to PMH to have an MRI to see that everything is ok. Every MRI I have, we all get scared, and we hope and pray that my cancer doesn’t come back. It is very scary and we are all frightened about that. Mum worries a lot and I hope that she can one day not worry so much. I want to grow up to be a big boy like my dad and drive a car. I tell my mum I am going to be a big boy one day and she smiles. I know she hopes very much that I do.

Me too.

ATRT is a is a very rare, fast-growing tumor of the brain and spinal cord.

It usually occurs in children younger than three years of age, and is diagnosed three in one million children.

The survival rate for this cancer is less than 10%.

Thank you 

Jayden & Leisl (Jayden's mum)