Superhero Kobe

Hello I'm Kobe, I'm five years old and I have a Craniopharyngioma, I'm fundraising for Noah's Ark Children's Hospital, to give back for all of the love and support that I have been shown over the last three years.

Please read my story below.

On the 1st of March 2022 my Mammy found out that I had a brain tumour. The next day I went down to Noah's Ark hospital, where we got to meet all the amazing doctors and nurses that look after me they give me stickers and cars and my neuro nurses buy me balloons when I'm extra good.

I had my first surgery not long after where they were hoping to get the tumour out through my nose but unfortunately my tumour had turned solid so it was unsuccessful, that surgery was over ten hours long and I had to spend the next few days in HDU before going back down to Owl ward but mammy and Grumpy never left my side, I even got to have a visit from Nana.

For my second surgery I had to have a craniotomy to get my tumour out and they managed to remove 90% of my tumour, which my doctors were very happy about, the left over tumour was left on my optic nerves, main blood vessel and my memory so nobody wanted to touch that. This surgery was over twelve hours long, I was very tired after this surgery and spent a little longer in ICU but Mammy said I was a superstar and we had lots of cwtches in bed.

When I got home, a few days later  Uncle Rhys noticed my stitches didn't look right and they weren't healing properly, so Mammy and Grumpy took me back to the hospital where I had antibiotics but unfortunately they didn't work, I was back in hospital, I ended up having what my Mammy calls a csf explosion, as my stitches opened up and the fluid from my head sprayed all over Mammy, my favourite nurse 'RaRa' was there too. Grumpy had to press the emergency button and the room filled with so many doctors and nurses, I had to have surgery again and they put a drain in my head, I think I drove the nurses around the bend as you were meant to lie still, but I was up and down so my drain needed to be adjusted all the time but I got to steal their spirit level and use it as a car ramp. The play team always made sure I had lots of toys to play with.

The doctors were struggling to find a vein on me, so they decided to put a hickman line in me instead, so I could stop being poked and prodded everytime my cannula failed. My bone flap got infected and I had a surgery to remove it, I had a hole in my head for a little while. I had another surgery as they found out I needed a VP Shunt. My big sister also got to come and sleep in the Ronald Mcdonald hotel next door as she was missing being with Mammy too. I even got to see Bampi and Aunty Ffion and Uncle Rhys. When I went home I had amazing nurses come change my dressings and make sure I was okay, they even sang and danced with me. They were the best.

I had to go back to hospital for another surgery to sort out my no bone flap, but sadly plan A didn't go to plan, they cut my skull to split in half and my skull just shattered so we went with plan B and put the pieces together like a jigsaw in the hope that it would knit to the rest of my skull, it's been over a year and a half since my last surgery and sadly plan B hasn't worked so Mammy is waiting to find out what the next plan is. Mammy lost count on how many surgeries I have had but we think it's around fifteen procedures.

I have my own backpack that comes with me everywhere as I have to carry an emergency injection around with me, and my hydrocortisol as I take that three times a day, I have adrenal insufficiency. I also have hypothyroidism so I take one tablet a day, I stopped growing so Mammy needs to give me a growth hormone injection every night to help me grow, my eyesight isn't very good either, I have tunnel vision but I don't let that stop me.

My tumour has grown slightly since my tumour removal surgery but my last scan was stable and I get another scan on Wednesday 30th April to check it again. Mammy got told that no neuro surgeon will operate on my tumour now, so we're waiting for the right time to do radiation.

I wear my helmet to protect my head, especially in school but the staff and children all look after me and make sure I'm okay.

Mammy says I'm an amazing superhero.

If you made it to the end of my story thank you for reading about me.