Posted on Tuesday 22 September 2020

Jude’s Story: “I saw Jude’s little face and I thought, how the hell am I going to tell him what’s wrong with him?”

Jude had been suffering with headaches for a week or so, and when he started being sick his mum Katie realised something wasn’t right. After doctors at their local A&E didn’t find anything wrong, Katie took him to along to her optician’s appointment a few days later. The optician took one look in Jude’s eyes and sent them straight to the eye hospital in Milton Keynes. Later that day, a CT scan revealed Jude had a tumour the size of a plum in the back of his head. This wasn’t what Jude or his mum had planned for this 8th birthday. Here, Katie tells their story:

I noticed that Jude wasn’t drinking and eating as much as usual, and he was getting headaches. He didn’t want to go to basketball or football, and I thought this just wasn’t like Jude at all. He’d had these headaches for about a week, and then he started being sick. He was vomiting in the mornings, during the day, and still complaining about the headaches, and that’s when I took him to the doctors. That was on the Tuesday. The doctor said to keep a food diary, he checked Jude over and said to go to A&E if he kept being sick. On the Wednesday morning he was violently sick at about 5am so I took him straight to A&E. We sat there for seven hours, just to be told they couldn’t find anything wrong with Jude.

I had an optician’s appointment on the Thursday so I decided to take him that because it was the only other thing I could think of. Jude wasn’t happy, he didn’t want to have his eyes tested, plus it was his 8th birthday.

She took one look in Jude’s eyes and said she could see that the optical nerve was swollen, and that there was fluids leaking out of it. She sent us straight to the eye hospital in Milton Keynes. We literally went there straight away, and got seen straight away. They did an eye scan, and then from that scan they doctor said they were going to send us Ward 5, the children’s ward in Milton Keynes, because they needed to do a CT scan. This was Jude’s 8th birthday, and he was fuming. I told him we just needed to get this done, and we could see his friends the next day.

So that’s when they did the CT scan, and that’s when they found the tumour, it was the size of a plum. It was huge, and as a mum, you don’t even register that it’s going to be something that serious. They hadn’t told us what they were looking for. We were still on the regular children’s ward when the results of the scan came back, and that’s when they said they were going to have to, at midnight that night, blue-light us to Oxford.

We arrived in Oxford on the Thursday night and they explained the scan results to us and what they could see, and literally on the Friday they told us that on Monday 9th March they were going to take the tumour away. It didn’t seem real, every morning I was waking up thinking ‘was that a nightmare!?’ – That lasted for about a month until it actually sunk in.

The Medulloblastoma had also travelled to Jude’s spine/spinal fluids and fluids around his brain. I didn’t know what to think when the doctor told me. And then I saw Jude’s little face and I thought, how the hell am I going to tell him what’s wrong with him?  At first, I asked if we could just call the tumour a lump when we’re taking to Jude but the doctor said to be honest with him, so I sat down with him and I explained that he had a lump in the back of his head, and that’s what’s causing the headaches and all the sickness. And I explained that the surgeons were going to take it out and that that would make him feel better, and that all his headaches were going to go away. He understood, he’s a very quiet and reserved, he’s a boy and he doesn’t really open up about his feelings, but I could tell he was terrified. He’s normally such a healthy boy, we were never at the hospital, never at the doctors. It was such a shock for Jude, even now I wonder what we really understand about it all.

On that Monday, he had an eight hour operation, and they successfully removed 95% of the tumour. I remember the chemo doctor saying, Katie if this was my son I wouldn’t want anyone else apparent from these two gentleman here, the surgeons, to operate on my son. For him to say that, it was probably the best thing I could have heard. It was as successful as it could have gone. It was amazing. Because of where the tumour was, his balance has been effected. One of the side effects from the surgery was that he got weakness in the right-hand side of his body. He had no strength in his arm and hands, but over the months it’s slowly coming back. He’s been doing a lot of physio.  He can throw a basketball, like he always could. It’s great physio for Jude, he sits there for hours just throwing the ball into the hoop. He sits down to do it, but he’s doing it, which is amazing. He can walk but not independently, and confidently. He’s got a zimmer-frame and he’s in a wheel chair.

After the operation Jude had two weeks to recover before starting chemo. Jude was so traumatised, literally a doctor couldn’t walk in the room without Jude going mad. We had a nightmare with cannulas, anything. It was a nightmare. He was meant to start the radiotherapy first but Dr Wilson said to start with the chemo instead of radiotherapy. It was better for Jude. He was so traumatised bless him, and for the radiotherapy he’d have to have a general anaesthetic every day which would have been awful for him. Chemo was as OK as it can be. Thankfully, three months of chemo got rid of the rest of the percentage of the tumour in the back of his head. The little mass he had shrunk for 4mm to 2mm, it was amazing.

This was all going on during the Covid.  Jude was diagnosed the week before lock-down happened. Both Jude’s dad and I were allowed to be in the hospital, but only one of us was able to sleep there.

After chemotherapy, Jude had another two week break, and that’s when we started the radiotherapy. He had that from 17th June until July 29th. Because of Covid and everything, we had to go to the Royal Marsden in Sutton for that. He had 30 days of intense radiotherapy. Every morning he had to have a general anaesthetic, we were luckily the first ones to go down, so we’d get there at 7.30am every morning, he’d have the general anaesthetic at just gone 8am, and he’d be down there from between 30mins and an hour.

The play therapists were still working at the Royal Marsden during the Covid lockdown, which was great. We had a play therapist come down for radiotherapy every single morning. That hospital is one of a kind, they are amazing. They made a book for Jude of his journey, they put in a picture of the front of the hospital, of the staff, a picture of the room where he’ll have the radiotherapy, and the journey down to radiotherapy. He looked at the booked a few weeks before he started so it wasn’t all alien to him. It was amazing. He also had this radiotherapy mask designed like Iron Man, it’s so cool. He got to choose what was on it. I was really impressed.

Jude loves football and basketball, and he’s been playing basketball in his wheelchair. It’s really good for him. He’s got such a good throw on him. I’m hoping he’ll be walking more independently soon. The other night I heard him get out of bed, hold on to the wall, and go to the toilet on his own. It was amazing, I praised him and it’s made him want to do it more.

We’ve been supported by Sarah, our CLIC Sargent Social Worker.  We met her early on, she’s been amazing. I’ve not met her face to face, but we’ve spoken over the phone.  All of this is new to us anyway, we haven’t known any different. Speaking with her on the phone and not seeing her is all we know. She helped me massively with benefit forms, bless her. She was brilliant at helping us.

Jude’s got another 7 cycles of chemotherapy that will take us to February 2021. It’s been quite a crazy few months, and people keep asking me how I’m being so strong. Jude makes me strong, you’ve got no choice. You just soldier through!

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