Rose's Story

In January 2025, Rose first developed pain in her left shoulder and had to be collected early from school as it was quite severe.

I took her to our local hospital to get checked out, as I originally thought she had pulled a muscle. Then over the following days, she developed high temperatures and pains in her chest and tummy. After a few days of her high temps not subsiding with paracetamol, she went to her GP who thought she potentially had a lung infection and put her on a course of antibiotics. When those didn't help (and at that point she was in too much pain to sleep lying flat) I took her straight to A&E. After an xray that revealed a mass under her lungs, she was admitted onto the ward.

From then on Rose had countless blood tests, ultrasound scans, CT scans and an MRI. Without any definitive results apart from they could see some unknown masses in her liver and after two long weeks, Rose was urgently transferred to Birmingham Children's Hospital.

For the first month being in BCH it was filled with lots of scans, tests and finally a biopsy. During this time, Rose was in agonising pain 24/7 and her health dramatically deteriorated, which was devastating to watch happen.

The first biopsy was inconclusive so had to wait until they could attempt a second biopsy, which was done towards the end of February 2025. After her second biopsy, Rose needed a life saving procedure to relieve the pressure that was building up in her abdomen. Following this procedure, Rose was kept in PICU in an induced coma until she had a second procedure to fully close up her abdomen.

This then brings us into March, Rose is still in her coma, during all this time, her liver masses grew at such a rate that her only option of treatment now was an emergency liver transplant.

Whilst in her coma, we recieved her biopsy results, which confirmed Rose had Undifferentiated Embryonal Sarcoma of the Liver (UESL) 💔 and she was placed on the Super Urgent Emergency Transplant List and although she was placed straight to number 1 on that list Nationally, it was another 11 days before she had her transplant procedure.

During her transplant procedure, her tumours ruptured 😔 and so now, the once contained cancer, has now exposed to the rest of Rose's body.

Rose started to come round from her coma on Mother's Day last year (March 30th), the day after her 11th Birthday. We decided not to tell her about her cancer diagnosis at that time, she had already been through enough and coping with the news about her transplant was hard enough. We needed to focus on getting her healed and strong enough for chemo.

By mid April, she was recovered enough to be moved out from PICU and back on a ward and wait until chemo could begin.

This was when we finally told Rose about her cancer and needing chemo and that conversation was truly soul destroying. Telling an adult they have cancer is hard enough, but to tell a child..... YOUR child, is one of the worst things a parent can ever go through.

The wait to start chemo was long, due to Rose's continued spikes in her temperature. Regardless of her temp spikes, Rose pushed herself daily to build her strength up with her physio and eventually was able to do a bit of unaided walking.

In May, Rose needed more scans but because they caused too much pain for her, she had to have a general anaesthetic. Because she was weak, they kept her in another induced coma and went back to PICU. The scans confirmed that there wasn't any cancer masses anywhere in her body so after a few days recovery, they decided to start chemo and to have it done in PICU so that Rose had round the clock 1-2-1 care.

Even though Rose's chemo was strong and caused her pain in the days/weeks following, she still tried to remain in high spirits and continued to push herself to gain her strength back.

By June and after more scans, we were brought into a room to be told the most devastating news. The cancer has spread, including her new liver and that there was nothing more they could do. My world was absolutely obliterated from that point onwards! I stood firm on the fact I did not want to tell Rose this news, she had pushed herself to do anything possible to fight this and I wasn't about to put this fear in her in her final weeks of life. So I wiped my eyes and went straight back to her bedside.

We tried to make her final weeks as enjoyable as possible. We threw her a belated birthday party where her best friends from school came (including our cat!!), we had an exclusive private Disney cinema showing (in her PICU room) of the new Lilo & Stitch and we had the best arts and crafts day where we made hand casts and hand prints on canvases.

By around June 17th, we were finally able to get Rose transferred out of hospital and into Worcester Acorns Hospice. To stop her wondering why she wasn't getting her second round of chemo, I told her that the doctors said she was well enough to go to a hospice for a few days until her next round.

I'd always feared I'd made the worst decision by transferring her to hospice. Rose needed a lot of oxygen at that point and the hospice wasn't equipped for that need. To see her struggle making that switch will forever haunt me.

The staff at the hospice were amazing and took such excellent care of Rose. They took care of the whole family too, we were all able to stay with her. Myself, her dad and little brother had an adjoining room with Rose. While both sets of grandparents, her uncle (my brother) and her big sister were in a huge family apartment above us.

The hospice ensured that every day we could wheel Rose's bed out into the garden (she really missed being able to go outside while in hospital), they brought a petting zoo to Rose, the therapy dog came every day to give Rose cuddles and all our extended family were able to visit for as long as they liked. That is something Rose would never have been able to do in hospital.

At 10:50pm June 22nd, Rose took her final breath peacefully in her sleep, with both myself and her dad by her side. Holding each hand, giving her lots of kisses and telling her she is loved so very much.

Life without my darling Rose has been so very difficult to navigate. She was my best friend, she was always happy and so full of life. So loving and caring and always thought of others before herself. She has left a massive hole that no one can ever replace. I try to focus on helping my other two children through their grief and to be the best mum I can be for them, but every day is a struggle.

Thank You Ben Saunders Foundation for this kind gift of a break away for myself and my children. With it being the week leading up to Rose's birthday, our first one without her, I needed to get away with the children to be able to grieve but also fill that time with some happiness too. In memory of our beautiful, strong, brave Rose 🌹

Rose Edith Chambers, Forever 11, 29/03/2014- 22/06/2025 🤍🎗