Posted on Monday 20 December 2021
Issy’s story: “I’m really sorry, we found something else.”
“We were waiting for medication to take home and then a consultant came in and said ‘I'm really sorry, we found something else’."
Nine days after their daughter Issy was diagnosed with Acute Myeloid Leukaemia, her parents were given a double blow with the news that she also had Philadelphia positive chromosome, a very rare form of childhood leukaemia. Here, the family share their story.
“That was a shocker, a real shocker because we thought we were going home.
“It was a massive blow, just as you feel like you’re coming to terms with the diagnosis and prognosis. Then suddenly to hear that, it just floored us completely. You end up thinking what next? What else? At that point we were on our knees.”
Nine days after their daughter Issy was diagnosed with Acute Myeloid Leukaemia, her parents were given a double blow with the news that she also had Philadelphia positive chromosome, a very rare form of childhood leukaemia.
The treatment meant that Issy spent three months in The Royal Marsden Hospital.
Mum Annie said: “The treatment, scarily called high risk blocks, were horrendous. Issy had a port put in at the beginning of her treatment, and then she ended up having to have a second pic line because they said there’s going to be so much going in and so much needed to come out.
“They told us on the day they admitted us it that she needed to have a nasogastric (NG) tube. We’re sitting in this consultation room and Issy just looked at Anthony and I, then a tear came down her face, because the thought of something like that was too much for her.
“The first night in St. George’s, when the nurses stuck me in a little bed next to Issy and the lights have gone out. Then she said to me: “Mummy, am I gonna lose all my hair?”
“I got out of my bed and I got into her bed put my arms round and said “yeah you will sweetheart but it will grow back”. And for literally for half a second she was quiet. Then she went; “Well. At least, I won’t have to wash it for a while”.
Now Issy, who has finished maintenance treatment and only has to attend monthly check ups, is enjoying life again. Her family is sharing its story to raise awareness of the charity that helped them so much.
Annie said: “It has been a horrible journey but Issy has been so brave and positive throughout. Without the support of Young Lives vs Cancer the journey would have been a much lonelier and much more difficult.
“Issy was so brave, just an incredible and positive kid. I have learned from her, genuinely. People say to me, you’re incredible, just so strong. I feel like saying there is no other option. There was not a tick box that said, if you’d like to opt out of having leukaemia in your family then just tick here, that was not available to us. We are on this journey. Like it or not.
“But I look at her and I take strength from her because she’s such a strong and positive person. And, of course, they have their bad days where she’s says “why me?” and “it’s not fair”. But she’s just she’s an absolute force. She’s always been very, very determined and strong. I think this is helping her now.”
Back in 2018, concerned parents and teachers had noticed a change in Issy, then 11, when she was in her last term of Year 6.
Mum Annie said: “Her form tutor who I’ve known for years because of all three of my girls gone through the same school approached me in the corridor and she said, ‘What’s up with Issy? She’s just not herself. She’s always been a very enthusiastic bright and wants to answer every question and be involved in everything going on and now she just seems to have her head on the desk all the time- she looks exhausted.’
“I had noticed that she was moody at home but she was 11, so I had thought that she’s just approaching that kind of pre-teen moody phase. Tired all the time, wants to be in the bedroom all the time, I put it down to that.
“We then went to visit some friends in Cornwall and we went on a long walk with their dogs and one of the dogs pulled Issy over and she twisted her ankle which led to her needing to use crutches.
“Before that incident and on the whole trip, Issy had been moaning about going for long walks which is not like her. We always go on long walks with friends and she never made a fuss before. It’s obvious to me now why that was happening, but at the time, the last thing on my mind was that she’s got leukaemia.”
Sensing something wasn’t right when she noticed bruising and a rash on Issy’s leg, Annie took her daughter to the see their GP.
She said: “I’m never usually one to go to doctors with my kids. I’d usually say its fine, just run it under the tap. If you’re heads not falling off, then you’re fine. Thank goodness I did.
“Our GP was phenomenal. She initially suspected a kidney function problem and ordered a urine test. Then she phoned to say that I want you to go to the hospital now because it can have serious implications and the earlier it’s diagnosed and treated, the better.
“They took bloods and stuff and she just kept bleeding when they tried to access the cannula and it just kept bleeding crazily, which I now know was a platelet problem.
“The Nurse then came in and said ‘I’m just going to sit with you a minute, the doctor wants to have a quick word with you now.’
“It was such a shock. Issy couldn’t have leukaemia, it’s the last thing you expect.
“My husband came straight to the hospital, picked up a few overnight things because we were told she wouldn’t be able to leave.
“I told Issy, she was very, very quiet about it. She was feeling unwell and so she just kind of went along with everything. I don’t think she really understood, I don’t think any of us fully understood.”
Issy went by ambulance to St George’s the following morning, where she was put in to an isolation room in the paediatric intensive care unit.
Annie said: “Issy was asking me to take pictures of her in the ambulance as she wanted to show her friends. Clearly, she’s not really kind of grasping what’s going on, what’s about to happen to her, to our family, to our lives, to all of us. We were about to embark on this massive journey.
“I didn’t know that leukaemia was to do with blood. I didn’t know that it was not to do with tumours so it was it was a massive learning curve.”
Nine days later, the family were sitting on Isssy’s bed in St. George’s, waiting to go home when doctors told them about the Philadelphia chromosome.
Annie said: “It is a lot more aggressive and harder to treat. The numbers are just very different in terms of success rates, compared to ALL.
“We were having Philadelphia explained to and the horrors it involved. That was when my husband broke down, which isn’t like him. He’s such a strong kind of man and doesn’t show his emotions.
“The new diagnosis meant another medication and a different protocol. A much harsher protocol and which I think is now changed because it’s so harsh and we were one of the last families put onto it.
“It included a three month treatment block. Each three treatment blocks of a month each start back to back, called the high risk blocks. We were in the Marsden for three months and I didn’t leave it for one night.
“I’ve got two other little girls, so it was very difficult and has been a very difficult period. We took on a nanny to help us cope which was just for the other two girls, their sanity and continuity as well as Anthony’s because he’s trying to run his own business and emotionally and physically provide for two little girls here. Being different ages, they both have different needs as well as different understandings of what was going on.
“Anthony was also supporting me by bringing up food for Issy and I, as we wanted home comforts. Then bring up the washing, take washing home. I don’t know how he coped, I really don’t. My job was the easy job. I spent so long just sitting cross legged on the bed watching daytime TV. So physically I was okay but I don’t know how he coped.”
Annie3 says the family’s Young Lives vs Cancer social worker, Hannah, was ‘incredible’.
“Straight away when she met us at the Marsden she came in and said, ‘right, we’re gonna get you free car parking pass from one your local charities in Horsham.’
“She set us up with a pair of Super Shoes, which are pair of converse boots that are specially designed by an artist based on the interests and hobbies of the child. Issy loves them, as she wears them all the time.
“Hannah always came in with a massive smile on her face and that was our world for three months, which doesn’t sound like a long time. But when you’re living there for three months, she was part of our community.
“Knowing that she was there, knowing that she would always stop by when she was walking through the ward, have a chat and make a point of coming to see us. She was just so empathetic and having her there was such a comfort to us.
“Those long hospital days and you’re stuck in a room, it’s boring. It’s really, really boring. There were times when I would be not wanting to leave Issy because she was so poorly and yet you know, I’m dying of shame because I’m standing there in my pyjamas and I know the consultants round is about to start. Hannah would come and give you the head space to stand in the shower for five minutes without thinking about I’ve got to get back. It’s things like that are absolutely priceless. Genuinely, I cannot understand explain how comforting it is to know that there is someone that you trust and your child trusts. The nurses are there but as much as they would love to do that, they just don’t have the time.
“Having Hannah there was such an integral part of the treatment. Without her it would have been a lot darker, it would have been a lot lonelier for both Issy and I because she would come in and support us both. It’s like a safety net there behind us. Not medical, you know. We have the medical, it was the emotional support. It would have been a much lonelier and much more difficult journey.”
Christmas 2021 will be special for the family. When Issy was undergoing treatment, she spent December in hospital, though to make things festive she had Gingerbread the Elf move in to surprise her with his daily antics.
Once she came home, Annie tried so hard to make Christmas their best ever, by the time the 25th arrived she was emotionally and physically exhausted and snapped at the children early in the day.
“The horror and the anxiety of the past six months and the suffering I’d seen, not just Issy, but countless children of all ages in pain and fear, it all just became too much,” she said.
“My girls’ faces were shocked, their eyes filled with tears and I appreciated for the first time how deeply affected each member of our family was by cancer.
“This Christmas we were all excited to decorate the house, welcome the elves back and enjoy good food, a tree surrounded with presents and all the fun that Christmas has to offer. But mostly we are just grateful for the chance to spend time together.
“It’s pulled us all together, we’re closer than ever. We were always a very close family. We lost our first child only nine months into our relationship, so from the get go we have had obstacles thrown at us. But if there were positives to take from this horrible, horrible journey then it would be us as a family unit pulling together and our community around us. You know, just being there and showing us, we’re here has been incredible, strengthening and encouraging.
“We all appreciate the bond we have as a family more than ever. There will still be a row over the Christmas night movie though!”