Katie’s story: “Everything from that moment is different”

Mum Nanette and Dad Callum are sharing their story on the 1st anniversary of their daughter Katie passing away. Callum was due to take part in the Great North Run today (13th September) for CLIC Sargent. The race has been cancelled due to the pandemic but Callum is doing a virtual race near his home.

“This year’s Great North Run falls on the first anniversary of Katie’s death, and although it is going to be a pretty awful and tough day for us all, I’d rather be doing something than nothing, if I can do something for such a wonderful charity, then that’s even better.” – Callum

Katie was 15 years old when she was first diagnosed in September 2017 with Undifferentiated Neuroendocrine Carcinoma, a cancer that’s incredibly rare in adults, but even rarer in children. After six months of chemo the first scan results were brilliant. But about a year after she was first diagnosed, they saw on a scan the cancer had started to grow again. Katie took it all in her stride, all the way through she never once complained. Katie spent her last few weeks at The Christie, where her room became known as the party room, anyone who walked in the room got offered a piece of cake and everyone in the room had to smile and have a laugh. Very sadly Katie passed away on 13th September 2019.  Here Katie’s mum Nanette, and dad Callum share their story:

Katie was first diagnosed at the end of September in 2017. She didn’t feel well, she couldn’t really walk very well, and had a sore back and a sore stomach. We just naturally thought it was something wrong with her back or maybe even something like an appendicitis. I took Katie to see the doctor on the Monday afternoon, but by this stage Katie couldn’t walk, she couldn’t even get out of the car. This has gone from her being fine, to all of a sudden not being able to walk. The doctor said don’t even try and get out of the car, go directly to A&E. Nanette took Katie directly to A&E in Preston, and they spent the evening checking her over. They said it definitely wasn’t appendicitis, but they weren’t 100% sure what it was, however they wanted to do a few more tests.

The following morning, after all the pain relief she’d had, the doctors asked her to stand up and walk around the bed, which she could manage to do, so they thought she was fine. As we were already booked in for an ultrasound scan, the ward agreed we might as well go for the scan. We’re glad we did really, because that’s when they found something. We were told they could see something that wasn’t quite right with Katie’s liver and pancreas, and they wanted to do some more investigating. They could have quite easily sent us home without having that scan because she seemed fine, so it was lucky she had it. Later in the day when we were back on the ward, the doctor told us that she had something in her liver, which they presumed were cancer cells, and they were going to send her to Ward 84 at the Manchester Children’s Hospital for further investigation.

At this point your whole life changes, it’s like a pivotal point in your life, and everything from that moment is different. Typical Katie took it all in her stride. All the way through this whole situation, Katie never once complained. She just got on with it, even right to the last; she kept going. She kept strong the whole way through.

Katie was 15 when she was diagnosed, she’d just started her last year at high school; she’d been in High School for two weeks.

When we got to Manchester, it was confirmed the cancer was in her liver, and we knew it was in her pancreas. We’re both scientists, so we also knew that if it was in either of those places, the prognosis wasn’t good. Arriving at Manchester was like a whirlwind, they whisked her away for an ultrasound as soon as we got there. The consultant had waited for us to arrive so he could speak to us. He told us he was going to send Katie for biopsies the next day and they would have to be sent away in order to find out what cancer we were dealing with. He had an idea of what he was going to do. He told us she had big tumours in her liver, there were also tumours in her pancreas, in her lungs, and in her spine – that’s why she was getting a sore back and why she couldn’t walk easily, it had spread to her spine.

It took a while to actually diagnose the cancer type because the cancer she had was really rare. She was eventually diagnosed with Undifferentiated Neuroendocrine Carcinoma, and to put it into context, the consultant that we spoke to said it’s rare in adults, and even rarer in children, and that in his lifetime he wouldn’t treat another child with the same cancer, that’s how rare it was. He was very honest about the whole scenario, he told us that although it was a very rare cancer he was going to treat Katie as best they could, but we needed to understand it was a very difficult cancer to treat.

From there she went for a lumber puncture, and then a biopsy, and they fitted her with a Hickman line. We then had to wait for the absolute diagnosis before she started chemo. The team were speaking with The Christie hospital because of the rarity of her cancer, it took about two or three weeks to get a full diagnosis.

They gave Katie a course of chemotherapy, which was Cisplatin and etoposide, the first dose was, in the consultant’s words, a whopper dose. It knocked her for six; she was basically in hospital for the full six weeks.. Cancer patients are obviously susceptible to infections and after the first cycle of chemo, because it was such a big dose, she contracted an infection along with side effects. We ended up back in Preston Hospital. She spent almost a week on the children’s ward with a temperature that ranged from 39 and 43 degrees.

It was a harsh introduction to treatment, it was awful, it really was. She left Preston Hospital on the Saturday, by ambulance to Manchester. Ward 84 is like a comfort blanket, they know exactly what they’re doing. However the problem was, we were only just starting at this point. After that she began to feel ill, she felt sick from the chemotherapy. If you’re not well, and your blood count isn’t up high enough, then they have to delay the next round of chemotherapy, and she was having it every three weeks. After that bad spell she missed a session, they gave her a full six weeks off. But from that point, until the end of that treatment, it was six cycles of chemotherapy. The process was a week of chemotherapy in hospital, and then two weeks to recover before it all started again. That lasted until February. We had a scan at Christmas time, after 3 cycles of treatment, to check if the chemo was working. They normally wait and just speak to you in clinic with the results, but the results were so fabulous, and the consultant knew what a horrendous time Katie had had, that he rang up as soon as he could. He told us the cancer had gone from her lungs, had massively reduced in her liver and around her pancreas, and reduced in her bone (which always takes longer). So they knew the treatment was working.

After the first scan, the results were brilliant. There was nothing showing in her lungs, the tumours had gone from her spine, and they had reduced significantly from her liver and pancreas.  The problem was, the cancer that was in her spine, had left her with two compression fractures in her spine, so she struggled to walk. She was in a wheelchair for a while. If anything could have been piled on top of Katie, it was, but she continued to take it all in her stride.

The consultant at the time was absolutely amazed at how well she had responded to the treatment, and that they were going to put her on a monitoring plan. That was in February 2018. They were going to have her back for six-monthly scans to see how she was progressing.  So she did her exams, and got into college, and she went to her prom, which was another thing we didn’t ever think she would get to, but she did. We were carrying on, and going in for the scans. It was in the September, about a year after she was first diagnosed, that they saw on a scan the cancer had started to grow again.

At this point, the consultant at the Children’s Hospital had said that the best place for Katie was The Christie, because they’d overseen her care from the start. So we were transferred to The Christie and she then went through another three or four different chemotherapy regimes. The first lot of chemo was tablets which meant she could continue to go to college. She didn’t tell anyone at college that the cancer had returned. Because the chemo was tablets; she didn’t lose her hair, so it was only the people who knew her from school that knew. She just wanted a clean slate. Typical Katie, she didn’t want them to worry. She loved all her friends. What people didn’t realise was that Katie was kind of like the glue that kept her group of friends together. She was the one that organised most things, she was the one that introduced others to the group. When she passed away we had parents telling us that they were amazed because their son or daughter didn’t really know anybody at school, and then all of a sudden they knew this girl called Katie, and she’d brought them into her group of friends. That’s the sort of person she was, so you can understand why she didn’t then want other people to know things weren’t right.

With the three or four different types of chemotherapy, they tried whatever they could, just to try to reduce the cancer, unfortunately successive scans showed it was getting worse. One of the worse days was when she’d just had a scan, the doctor had come in to talk to her, he said he’d just reviewed the latest scans and was afraid it really wasn’t good news. The cancer had spread quite considerably, and we were now measuring her lifespan in a matter of months. He said they’d still try her on another type of treatment and that he was going to go away and sort out the details. We knew all along what the situation was, but I remember sitting there thinking that this was the worst bit of news you could ever imagine hearing. I didn’t know how I was dealing with it, and I wasn’t dealing with it well, but I had no idea how Katie was dealing with it. When the doctor went out the room she turned around and looked at us, and she just said (excuse the language!) “Who the f**K does he think he is; to come in here and tell a seventeen year old she’s only got a few months to live?”. This was Katie all over, the way she put it broke the tension – this was a doctor that Katie affectionately called Dr Doom from that point onwards. She was indignant by the delivery of this news but in her head she knew how much that would affect us all, she knew how much that would hurt us, and she has this way of deflecting everything and taking all the pain away.

It was March 2019 by this point, and after that she had so many different treatments, but was gradually getting weaker and weaker. We’d booked to go on holiday at the end of August 2019, Callum’s Dad lives up in Ullapool in the Highlands in Scotland, and she loved it up there and desperately wanted to go. The week before we popped into The Christie to see the pain team so they could get her pain relief sorted. They’d realised the cancer had spread slightly in her spine, so they needed to give her radiotherapy because it was obviously dangerous enough that they wanted her to lie flat wearing a neck-brace and not move. She hated the neck brace, she affectionately called it Jeff. She needed some radiotherapy to reduce the cancer growth around her neck and reduce the risk of paralysis. This poor radiographer walked into the room to have a little chat and explain what was going to happen. The first thing Katie asked was “when are you going to do this? Will it be today? Only I need to get home and pack for my holiday to Ullapool”. Sure enough, Katie was seen by the radiographers that day!

Katie ended up going on holiday still wearing Jeff, but we got out of hospital in time to go. She was still in a lot of pain when we arrived, she was on quite a few different types of pain medicine at that time, but she made the most of the week we had up there. Everything she wanted to do, we did, even if it meant us having to carry her wheelchair up three or four flights of stairs to her favourite café! It was brilliant, and it’s great we did it because it ended up being the last holiday that she had.

While we were there, she was struggling a little, she was in a wheelchair the whole time, and she was struggling with pain at night. We were due to come back on the Friday, but we noticed on the Thursday that one side of her face had kind of dropped, you could see that one side of her mouth dropped little bit and her eye had dropped little bit. We didn’t say anything but in our heads we thought she’d had some sort of stroke while we’d been away. We went out on the Thursday evening for something to eat, but by the time we’d finished, Katie was in so much pain that we decided to cut it short and come home a day early. We left Ullapool at about 8pm on the Thursday night, and we drove through the night, we got back at about 4am. We were at home for a couple of hours, but then we drove to The Christie, and that was the last time she was at home.

When we arrived at The Christie and doctors had a look at her. They took her for a scan and they said that the cancer was unfortunately moving quite quickly, and that it had moved to the lining of her brain, hence why she was struggling a little bit with her face and holding things. She had always had good eyesight, but she now couldn’t really see out of one eye. She took to wearing an eye patch after this point as it was easier for her, and of course she loved having an eye patch on and wearing glasses, the fashionista that she was.

Katie’s room at The Christie became known as the party room. Anyone who walked in the room got offered a piece of cake – Friends, the cleaners, doctors, nurses, anybody! Everyone in the room had to smile and have a laugh. We had different coloured wigs to try on, she did painting – all kinds of things! She was there from the beginning of September until the 13th, so just under two weeks.

When we first got there, the consultant said all they could do was make her comfortable, as the treatment wasn’t working. She was due to have chemo on the Monday, but they said they thought it was best to leave that now and instead just keep her comfy. And Katie’s response was, ‘well this cancer doesn’t like me does it?’. Afterwards the consultant asked if I understood what she’d just told Katie, I said yes, and I told them that while Katie is looking like that and smiling, and while Katie has that determination, we are going to do the same. I told them that we knew two years ago what the outcome of this would be, and that we’ve had two years to get our heads around this, as hard as it is. So I wasn’t going to breakdown and cry, because that wasn’t what Katie wanted us to do. Katie wanted us to be happy, and Katie wanted us to just crack on as normal. I genuinely think they just thought we were going to all collapse into a heap, but of course we couldn’t, we couldn’t do that because Katie didn’t do that.

Two days before she’d passed away she said she desperately wanted to go outside – she’d been in The Christie for such a long time, and it’s all air conditioned – the windows don’t open and you can’t get any fresh air in. We weren’t sure how we’d do it, but one of the nurses, who was brilliant, said she’d get it sorted. They took her in her bed all the way down to the garden in the middle of The Christie. It was a really nice evening, there were loads of us there – our families were there, so were some friends. It was a brilliant evening, they took her outside and she loved it. She was sat in her bed chatting away, and she was so happy. We went back up to her room and the Teenage Cancer Trust there had ordered pizzas, so we had Domino’s, and Katie’s sister and her cousin had been out all that day making her a book with pictures of her friends and special times. We sat there while she looked through these pictures. It was brilliant, she was chatting away and was so happy. She was completely in her element. It was lovely.

Unfortunately by the morning, that was it, she wasn’t responsive at all. It took us by surprise and she sadly passed away on September 13th 2019.

We had a CLIC Sargent Social Worker called Esther supporting us. She was absolutely brilliant.