Jess John, a nursery teacher, lives in Bridgend with her husband Grant and daughter Lacie, who is five. Lacie was diagnosed with Acute lymphoblastic leukaemia (ALL) in April 2023 and has had intensive chemotherapy at the Children’s Hospital in Cardiff. The family have stayed in LATCH accommodation while Lacie has been in and out of hospital having chemotherapy and with the side effects of treatment. Jess is very grateful for support from LATCH Social Worker, Rachel, who continues to help the family as Lacie goes through maintenance chemotherapy.
“When Lacie was diagnosed with leukaemia, we knew we had to hold it together because it’s her going through this. She’s a little warrior for what she has been through. She is a very sassy little girl who knows what she wants. She’s a comedian on the ward, making the nurses laugh.
So, we’ve got to be strong. But some days are difficult. Then I know I could call Rachel, our LATCH Social Worker. If I says I need to speak to her, she might come to my house if I’m at home or to the ward if we’re in hospital. We will ask someone, like a play therapist, to sit with Lacie and then we’ll go off somewhere quiet and have a discussion. I can just let go of my feelings with her. That support is amazing.
Rachel and LATCH have got so many families, but they have taken the time to get to know ours. That, on in its own, is golden.
Getting Diagnosed
I was distraught when Lacie was diagnosed on 14 April 2023. But also felt some relief that there was a plan, and she was being taken care of.
Before, she had had around six months of being constantly ill. She would not sleep or eat, was being sick and her legs hurt. The doctors said it was viral. But, one morning, she woke up with a massive lump on the side of her neck. It was nine by four centimetres, and she couldn’t move her neck. We were in hospital for a week, but they said it was a build-up of dead tissue and sent us home.
Then Lacie had a high temperature, sickness and diarrhoea and we were back in hospital where they found that her liver and spleen were enlarged. The doctors at the Princess of Wales hospital in Bridgend suspected leukaemia and transferred us to the Children’s Hospital in Cardiff. After an hour of being there, and one blood test, they diagnosed her with ALL. It was surreal and extremely hard to swallow what was going on. Cancer hadn’t entered our mind before it was mentioned. As a small family, we felt lonely.
Meeting LATCH
We were introduced to LATCH the next day. They told us that they were here for us if we needed anything and that we weren’t alone. It was a really welcoming feeling at that time. They gave us information about everything that they can help us with and a list of other charities that could support us.
They gave us passes for the gym which was a godsend for Grant because that’s how he releases his emotions. They gave us money to help with meals and petrol. Then LATCH assigned Rachel to us. She was so friendly. I felt like I could speak to her straight away, even though I didn’t know her.
LATCH had already made arrangements for us to have a room in their accommodation upstairs. That was sorted before we even got there. We were first in hospital for nine days while Lacie had surgery to put her port in and started chemotherapy. I stayed in the room with Lacie on the ward, and Grant slept in the LATCH accommodation upstairs.
It helped to have the facilities upstairs in the LATCH accommodation that we could go and use. We had access to the shower, towels, kitchen, and a washing machine which was a massive godsend. Lacie likes her own blanket and creature comforts, like her pyjamas, so we could wash those. I also cooked us a meal in the evening. It was a little bit of normality.
Change of Treatment
For six months, we were back and forth to the hospital for intense weekly chemo. LATCH paid for my fuel which helped because it just mounts up. For six months, the chemo didn’t work, so it was a challenging time. Rachel was a huge support, constantly checking in on us as a family.
We had to change to a more intense protocol. That was hard as we were in the unknown. Changing protocol put us on a different path to the friends we’d made whose children were also going through treatment.
Lacie was admitted to hospital for 12 days to have a PICC line put in and start her treatment of blinatumomab, a non-invasive immunotherapy which was continuous. So over four weeks, the treatment was continuously going into her body, and she had to carry around a backpack which contained the drug in a bag. I remember she was marching up and down the ward dragging the backpack behind her which made the nurses giggle.
We’d be in hospital twice a week to have the bag changed. She had to have the backpack for two months. That treatment worked to get the cancer down to the level that we needed it to be. Then we started another stage of chemo where we practically lived in hospital for four months. Lacie was so poorly. It was awful.
Practical Support
We were in hospital for Lacie’s fifth birthday. LATCH brought her balloons, a cake, presents and a card which was really nice. They’ve been there for us too. When our washing machine blew up, they sent money to buy a new one. When I was off work and my pay went down, they were constantly checking in with me to see if I needed financial support.
Lacie missed 14 months of school. She started back just before the summer holidays in 2024 and is now in year one. She is on maintenance chemotherapy until November 2025. She has oral chemo every night, intravenous chemo in hospital every four weeks and a lumbar puncture every 12 weeks.
LATCH Trips and Caravan
She is thriving being back at school. She has missed her friends and loves reading, playing, being active and making up little dances. Lacie has loved the LATCH days out for families going through treatment. Lacie deserves to be treated if she’s well because she misses out on so much. We had a cinema day recently with other LATCH families which brings us all together. LATCH paid for the cinema and gave us a gift voucher to get food and drink. We did their Build-A-Bear day, which was lovely, and we went to a hotel afterwards for afternoon tea.
In June 2024, the week before I went back to work and Lacie went back to school, we used the LATCH caravan in Kiln Park, Tenby. It was lovely. When we arrived, LATCH had put £250 into my account for spending money. They provided guest passes so you could use all the facilities, including the entertainment which Lacie loved. LATCH helped to organise for the community nurse from that region to come to the caravan to do Lacie’s bloods, so we didn’t need to worry. Lacie didn’t want to leave.
Fundraising
We’ve done fundraising for LATCH. We have done a lot with Betsy’s family. She’s in the same school as Lacie and they were diagnosed three weeks apart. At sports day, their school did a wear purple day for LATCH. A lot of children at the school, including Lacie, ran a 2k fun run in Cardiff for LATCH. In total, the school has raised around £6,000.
We supported a rounders event together in summer 2024 with Betsy’s family. It had a live band and entertainment, raising thousands for LATCH. We also took part in an event at Chepstow Racecourse. The first race of the season in 2023 raised money for LATCH. The children walked around with buckets which raised around £30,000 from the event.
Lacie won the LATCH Christmas card competition. Her Christmas picture was printed on cards, and they were sold to raise money for LATCH. The picture is a Christmas tree with lights around the boarder. It was a design she did when she was admitted to hospital. She is extremely excited for the cards to be sold.
LATCH have done so much for us, and we want to give something to them. Then they can give another family the support we have had. LATCH rely on donations, and we need to get the word out there about them because what they’ve done for us is invaluable.
Future Thoughts
I want to make Lacie proud. When she was diagnosed, I was completing my dissertation for me PGCE. I was not able to write it but finished the course after they took my exceptional circumstances into account. Rachel wrote a letter for me, telling the university what had happened with Lacie. I wanted to show Lacie you should never give up if you want something.
I’ve never had anxiety before, but now I worry if Lacie tells me she feels sick or is hot to touch. Rachel is helping to find some therapy for me to help with my anxiety. This experience has made me an absolute control freak, but we live in the moment more now too. If Lacie is well, me and my husband don’t wait until the weekend to do something, we just go and do it.
I hope to see LATCH thrive and keep supporting families, like they have us. You can’t ask any more of them as what they do is amazing.
It is quite difficult to think about the future. I hope Lacie doesn’t relapse. I just want her to be happy, successful and do whatever she wants, to dream high and go for it. Sadly, I don’t think the worry of cancer is ever going to go away for us as parents.”
