Rose Kelly

“Our world fell to pieces on the 13th July, 2006 when, after a series of infections, Rose was diagnosed with bone marrow failure. The next day we were admitted to Great Ormond Street Hospital.

Rose was 5 months old.

Our lives changed drastically from that moment.

We had never spent a night away from Tara, our 3-year-old. My husband, Eoin, and I were suddenly living on Lion Ward, the oncology ward, at Great Ormond Street. Luckily my mother moved into our house to look after Tara, but what a blow it still was for our little girl.

On Tara’s first visit she was so happy to be back with her family. It was heartbreaking for us to watch our two girls together. No one had prepared us for how we would cope with missing Tara on top of our devastation at Rose’s diagnosis.

A few days after Rose was admitted she had a Hickman line inserted. This was her second general anaesthetic in less than a week. The operation to fit the line into her chest followed a bone marrow aspirate and lumbar puncture. The line is used to administer chemotherapy and other medication, and to take and give blood.

It was so frightening to see our little girl with these new attachments and heart breaking to think of the pain she must have been in.

We were told that Rose had infant acute lymphoblastic leukaemia (ALL), a form of leukaemia which is rare and difficult to treat. The doctors gave Rose a 50:50 chance of survival.

Treatment for Infant ALL is brutal. We watched our darling Rose’s body being pumped with steroids. We signed forms to consent to her being given toxic chemotherapy, knowing the hideous side effects that may follow. We had no choice.

As Rose's first Christmas approached, we were so excited that she might be home for it. We were bitterly disappointed when, on Christmas Eve, she got a temperature and ended up in hospital.

In April 2007, just when things seemed to be running a little more smoothly, Rose became very, very sick. An assumed infection worsened dramatically. Rose was transported back to Great Ormond Street Hospital from Kingston hospital.

She had more tubes put down her nose and mouth and was given help to breathe during the transfer. She ended up in intensive care on life-support.

Rose had developed a fungal infection which can be a side effect of
chemotherapy. All her medication was stopped and we prayed that she would
recover.

It was a long, slow battle, but Rose fought her way back.

She had lost so much weight. In the hospital we had to reintroduce tiny amounts of fluids and eventually food. We also had to try to help her to develop ‘normally’, learning to walk and play!

For a long time Rose continued on a concoction of medication and feeds through her naso-gastric tube, which went into her stomach via her nose. We never got used to giving Rose this amount of medication. We never stopped thinking of the damage it could be doing as well as the hope of curing her it offered.

Rose finished her treatment on 14th July, 2008 and she had her Hickman line removed two weeks later.

We cherish every moment with her and pray for her continued good health. We also think of the other ‘little Roses’ who have not been so lucky and hope
for a better cure in the future.”

Photo: Rose, fit and well in 2009.Read more about Rose on her very own website (a new window will open)

Read about Rose's Gift Challenge

You can see Rose on You Tube (a new window will open)

Developing less punishing treatments

We are funding vital research at Great Ormond Street Hospital and the associated Institute of Child Health. Together we're working towards the developement of treatments which are not only more effective, but which are less punishing than current chemotherapy regimes.Read about the new treatments being developed.

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