Rose’s Story shared by mum, Grace.

Rose Willavise was diagnosed with Acute Lymphoblastic Leukaemia in February 2023. Rose was nearly 4 at the time and has just rung the bell after her 6th birthday.

Rose has been through more than 2 years of intensive Chemotherapy at Noah’s Ark Children’s Hospital in Cardiff.

Latch support

Our Latch Social worker is Helen Clark. Helen has been a life line throughout this horrible time, offering support and actively looking for ways she can help. Most importantly she has been a hand to hold during the darkest times.

Diagnosis

I took Rose into the A&E for an x-ray on her ankle because she had developed a limp. She was an active little girl so I presumed she’d sprained it. Once there, they took bloods to rule out a bone infection. The results came back Neutropenic which means she had no immune defence at the time. This isn’t uncommon in any child after a viral infection. Rose was at nursery at the time so she was always getting viral infections, and Rose was well in herself apart from this limp. But when we went back for a second set of bloods after she caught chicken pox, they examined the blood and found the Leukaemia cells. They said if we hadn’t have bought her in for the limp, within a couple of months we would have started to see bruising on her skin and headaches. Once the Leukaemia cells leak out from the bone marrow and into the blood, if no treatment is done it can be fatal within a few months.

The shocking thing for us as a family is, we took what we thought was a healthy child with a sprained ankle into the hospital and came out with a child with Leukaemia. We were in complete shock. It can’t happen to your child, until it does, and your whole world falls apart.

Shortly after Rose was diagnosed I can remember Helen taking my husband Barrie and I into the quiet room and letting us know all the ways in which Latch could help. Helen had already sorted accommodation for us, got the hospital parking tickets cancelled and was a shoulder to cry on.
My husband spent the 1st couple of weeks living in the Latch accommodation above the Rainbow ward, as only one parent can be in the bed beside the patient. I can’t explain how vital it was for us both to be able to be that close to our incredible sick child.

Treatment

I was also 5 months pregnant at the time and I was overwhelmed with how I would be able to cope with one child going through intensive chemotherapy and a new born baby. It was an impossibly hard time and I honestly don’t know how we got through it.

However, having new baby brother Evan helped Rose in many ways, giving her something positive to distract her during long periods of isolation at home. As hard as it was, Evan kept us all going, we had to keep in a routine and couldn’t just stop and fall apart as much as we all wanted to.

Rose is a confident, imaginative and kind little girl. She loved making friends on the Rainbow ward and it was so important that she got to meet other children going through similar treatments as her so she didn’t feel alone. Latch is always organising fun events so the children and parents can keep connecting with each other.

The Latch events like Build a Bear and  Christmas parties were so important to Rose during her treatment. It was a chance to make friends and see other children with no hair and NG tubes so she didn’t feel so different. During treatment the children often miss out social activities because their immune system is compromised or the side effects of treatment is too much. Latch putting on events just for them helps make up for so much they miss out on.

The difference between Latch and other charities is, Latch are there saying we are going to help you and this is how. You don’t need to reach out to them to ask them for help, they are active in finding out what each family needs and putting that into action.

For example, because we live in Newport, quite close to the hospital, when Rose was stable we could go home. But for another month or two we came into the hospital almost everyday for numerous procedures or medicines. Latch helped us with the fuel costs of this constant back and forth.

We also needed to stay close to Noahs Ark hospital during Rose’s treatment incase she became unwell and needed to be rushed in. The use of Latch’s Caravan in Tenby was incredible. It gave us a chance as a family to get away. When your child becomes seriously ill you take a massive hit financially as you need to prioritise being there for your child over work. We couldn’t afford holidays because of this, and having the use of their caravan meant we could still get away and spend quality time together.

Back to School

Rose went into the maintenance phase of her treatment just at the end of August 2023 which meant she was able start her 1st day of primary school with everyone else. Unfortunately, during the month before she lost all her hair due to the chemotherapy. So she started her 1st day at school with no hair.

You worry anyway about your child’s first day, but the added level of her being bald, I was beside myself with worry that she would be bullied. Helen provided me with a lot of emotional support throughout this. I am happy to report Rose faced only a few comments which was squashed quickly by the school and the school rallied around her in support.

Rose on average manages 3 days of school as still gets very tired. During maintenance she would have lots of hospital appointments and bloods taken weekly. She would sometimes have long periods of school off because her blood levels were too low.

End of Treatment

Happily, Rose rang the bell on the 25th June 2025 but during her treatment she had:

Fundraising
When Rose was first diagnosed we fundraised for Latch and now Rose has rung the bell her school are doing a Princess and Superhero day to donate more to Latch as a thank you for all they’ve done for us.

Rose is in remission now, and we hope she stays this way. Unfortunately, relapses do happen but we have to try to live our lives without that thought hanging over our us. As parents we will always hold that fear but we can try and keep that worry from Rose so she can enjoy her life to the fullest. We need to move forward but we are forever changed by the children and staff weve met on Rose’s Leukaemia journey.