Jack's medulloblastoma Story

Morning sickness

I always knew something was wrong because he kept being sick every morning. It was always at a certain time, the moment he opened his eyes he would be sick. We got into a routine of him going to bed with a bucket. He wasn’t eating as if he ate too much he’d be sick. I kept taking him to the doctors and at one point they thought it was vertigo but apparently children can’t get vertigo. Then they thought it was separation anxiety because Jack never really wanted to go to school. Once Jack was at school, after about 20 minutes, he was fine, and I never had to pick him up early so I knew it wasn’t that.

He couldn’t walk in a straight line

Then one weekend it was taking him ages to walk, he couldn’t walk in a straight line, and he just kept falling side to side. We were trying to walk a 20-minute distance to the shop and it took us an hour. We sat him on the wall for a break and he couldn’t hold himself up, he kept falling backwards. That evening I did an e-consult and spoke to the GP on the phone. I didn’t want to take him to A&E and wait for six hours for it to just be an ear infection, so the GP said to come in to see her the next day. The GP asked Jack to walk for her and he was falling into the sides of the room again which is when the GP said something definitely wasn’t right. We’ve known her for years and is our family doctor. The GP then phoned the local hospital, and we were there within an hour. We then had to wait in a side room for a bed to become free and eventually one did in the burn’s unit. We were there overnight under observation and the next day Jack had his first MRI.

The MRI

Jack stayed awake for the MRI and even though they play the Disney channel whilst they’re inside, Jack didn’t like all of the noises so only lasted ten minutes. I went home whilst this was happening, but Jack’s dad called to say you’ve got to come back the doctors want to speak to us. I returned to the hospital and we were taken into a little room with the doctors. The doctor said, ‘we’ve done the MRI scan and it was only ten minutes but…’ and I said ‘you’ve found something haven’t you’ which I always knew at the back of my mind. They said yes and we’re going to have to put Jack to sleep so they can get a longer MRI in the evening. After that scan, they found the whole tumour which was the size of a cricket ball and was between the skull and the top of the spine. They think it had been there for a couple of years already. They showed us the scan with a red line and said if he was anymore over the red line that it could have been so much worse.

Losing his speech

I kept blaming myself because I knew something was wrong. The doctors kept saying you’re lucky you brought him in when you did especially as he’s lost so much mobility. They scheduled surgery straight away and he was under for ten hours. That was when I broke down crying because you see all of the tubes. The last words Jack said to me before being put to sleep were ‘I want to go home’ and that was the last time I heard him speak for seven weeks. This is a common side effect of posterior fossa syndrome which can happen after surgery and it takes children different lengths of time for their speech to return. The first word Jack said was ‘mum’ and you hear the joke all the time of ‘I’m going to change my name from mum’ but for him to be speaking at all and that was his first word, it completely broke me.

In those seven weeks when Jack couldn’t speak, he would get really frustrated. He would growl like a dog to show he wasn’t happy or didn’t like something. I had to pick up signs on what he was trying to say. If he had a wet nappy, I would change it and he would start laughing because it meant I’d clocked on and knew what he needed. When I first came on the ward, you’re pretty much on your own even though there’s lots going on. The nurses are so busy and Jack really struggled with the amount of stimulus so for example if he heard a baby cry, he would cry. Jack ended up in isolation for his well-being which has really helped with his recovery as we think he has autism.

Starting radiotherapy

Four to six weeks after the surgery, none of the doctors could agree on what kind of rating for the medulloblastoma. He initially started on chemotherapy for five days but once they got the results back, they paused this and put him on radiotherapy, every day for five days, for six weeks. He’s put to sleep every time, Monday to Friday. He has his final week of radiotherapy and then a six week break before starting chemotherapy. The chemotherapy will be for nine months, and he’ll have it every three weeks. Then he’ll need another MRI scan to see what’s happened to the tumour. There’s a possibility it will come back so they have to monitor him for the next five years.

More side effects

We would hope he could come home whilst in-between chemotherapy sessions, but I don’t think we will be able to because of Jacks mobility. He needs access to the physiotherapist, and he has three sessions a week. He’ll be kept as an in-patient whilst we are in the break between radiotherapy and chemotherapy so he can keep accessing physio. The sessions are really helping him even though he’s still frozen down one side where he can’t shut the eye or move that side of his face. This was a side effect after the surgery. He can get upset about the lack of mobility as he can’t stand on his own yet so uses a wheelchair. He’s getting there but it’s going to take a while.

No child should have cancer

It’s just processing everything that’s been difficult. It’s all been so quick and everything is just now starting to slow down so I have time to let it sink in. I haven’t had the breakdown period yet, I’m still waiting for it. You wouldn’t wish this on your worst enemy, no child should have cancer. Jack has to go to the adult hospital for his radiotherapy and you can see the older cancer patients shaking their head when they look at him. He’s just starting to live his life but they do say he won’t remember a lot of this when he’s older. But now he’s got no hair, he’s starting to question the scar on the back of his head. He asked me why he’s got a scar, and I said remember when you were sick all the time, you had something in your heard that wasn’t supposed to be there so they took it out. That’s pretty much how far we go, he doesn’t know about the shunt on the side of his head. The shunt is permanent because of all the pressure the tumour put on his arteries. He hasn’t clocked on to it yet.

Jack is so cheeky and doesn’t stop talking now. He always get involved with playing and loves to paint with his best friend Chloe on the ward. We’re just taking each day as it comes.

Suzanna, Jack’s mum, June 2023

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