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Rose’s Story

 

Alison Kelly, Rose Kelly's mother

 

On the 24th January, 2006, our second little girl was born. We called her Rose Annabelle Kelly. She was just perfect.

    

 

We already had our lovely Tara. She was 3 and a half when her new little sister was born and she instantly took on the role of mini mother. Tara has been devoted to Rose since she was born, she was a very proud big sister.   

     

     

 

Our world fell to pieces on the 13th July, 2006, when after a series of infections , Rose was diagnosed with bone marrow failure at Kingston Hospital and on the 14th July we were admitted to Great Ormond Street Hospital. Rose was 5 and a half months old.

Our lives changed so drastically from that moment. Having never even spent a night away from Tara, apart from when I went hospital to have Rose, suddenly both Eoin and myself were 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. I was still breast feeding Rose so could not get away from the ward at all so we relied heavily on my mother to care for Tara – a wonderful job she did too- and bring her on the train to see us.   

 

   

We tried to prepare Tara for what she would see. Her beautiful little baby sister now had a tube down her nose and spent much of the time attached to tubes giving her blood and platelet transfusions or IV antibiotics, her little hands and feet bruised and wrapped in bandages from all the cannulae and blood tests she had already had. We had underestimated Tara’s strength of character though. This photo shows Tara’s first visit to see Rose and she was so happy to be back with her family she spent her time playing with Rose. It was heartbreaking for us to watch our two girls together, knowing what was happening and having to say goodbye to our little Tara. No one had prepared us for how we would cope with missing our other little girl on top of our devastation at our baby’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 have the line into her heart fitted 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 something called Infant Acute Lymphoblastic Leukaemia. Dr Webb, Rose’s consultant, explained as gently as he could that this was a rare form of leukaemia that was much harder to treat successfully. Her prognosis was not great, 50;50, as he put it. But as my sister, Fiona, a constant source of strength to me said, why shouldn’t Rose be in the 50% who survive. From that moment on we put all our faith in the wonderful staff at Great Ormond Street and in God and aimed for success.

The next series of photos speak for themselves. They show Rose’s courage, beauty and strength of character. We knew from the beginning that she was a fighter and would do all she could to keep going. We also knew that even in our weakest moments when the pain felt too much to bear, we had to be strong and keep fighting for Rose and also for Tara, to keep our family together. Treatment for infant ALL is brutal. We watched our darling Rose’s body be pumped with steroids and signed forms to consent to her being given toxic chemotherapy, knowing of the hideous side effects that may follow. We had no choice.

     

     

 

     

     

     

 

     

     

 

Some pictures truly capture the moment. Despite the bald head, the ng tube and the tubes hanging from her chest, Rose is still Tara’s beloved little sister and how she loves her!     

     

 

  Rose’s first Christmas! Momentum arranged for us to visit Father Christmas at Painshill Park. This was specifically for the oncology children from Kingston Hospital and their families, to limit the number of people around and consequently the chance of infection.    

     

 

We were so excited to think that Rose would be home for Christmas and so were bitterly disappointed when on Christmas eve she got a temperature and ended up in Kingston hospital. We managed to get permission for Rose to be ‘let out’ for a few hours on Christmas day. I don’t remember feeling any happier than when I watched my two girls opening their presents on my bed on Christmas day!    Roses first birthday, celebrated with lovely community nurses, Emma and Ruth..oh and chemo…

     

 

In April 2007, just when things seemed to be running a little more smoothly, Rose became very, very sick. An assumed infection worsened dramatically, resulting in Rose being transported back to GOSH from Kingston hospital by the pediatric retrieval team. She had more tubes put down her nose and mouth and was given help to breath on the way and 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 and 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!   

 

Rose continued on a concoction of medication and feeds through her ng tube for a long time. This photo shows the drugs we had to administer at home at numerous times of every day. We never got used to giving Rose this amount of medication and we never stopped thinking of the damage they could be doing as well as the hope of curing her.    
Another side effect of Rose’s treatment was a horrible skin condition, rather like acne. Despite this, her cheeky nature prevailed, and having done so well, so far, seemed a small price to pay.

 

Rose finished her treatment on 14th July 2008 and she had her hickman line removed on the 27th July.    

 

Every day I am grateful to still have Rose with us. I am still terrified of what the future might bring and not a second goes by where I look at her without thinking of the journey she has been on and is still going on. We cherish every moment with her and pray for her continued good health and we also think of the other ‘little Roses’ who have not been so lucky and hope for a better cure in the future.

 

 

Our world fell to pieces on the 13th July, 2006, when after a series of infections , Rose was diagnosed with bone marrow failure at Kingston Hospital and on the 14th July we were admitted to Great Ormond Street Hospital. Rose was 5 and a half months old.

 

Our lives changed so drastically from that moment. Having never even spent a night away from Tara, apart from when I went hospital to have Rose, suddenly both Eoin and myself were 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. I was still breast feeding Rose so could not get away from the ward at all so we relied heavily on my mother to care for Tara – a wonderful job she did too- and bring her on the train to see us.

 

We tried to prepare Tara for what she would see. Her beautiful little baby sister now had a tube down her nose and spent much of the time attached to tubes giving her blood and platelet transfusions or IV antibiotics, her little hands and feet bruised and wrapped in bandages from all the cannulae and blood tests she had already had. We had underestimated Tara’s strength of character though.

 

This photo shows Tara’s first visit to see Rose and she was so happy to be back with her family she spent her time playing with Rose. It was heartbreaking for us to watch our two girls together, knowing what was happening and having to say goodbye to our little Tara. No one had prepared us for how we would cope with missing our other little girl on top of our devastation at our baby’s diagnosis.

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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 have the line into her heart fitted 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 something called Infant Acute Lymphoblastic Leukaemia. Dr Webb, Rose’s consultant, explained as gently as he could that this was a rare form of leukaemia that was much harder to treat successfully. Her prognosis was not great, 50;50, as he put it. But as my sister, Fiona, a constant source of strength to me said, why shouldn’t Rose be in the 50% who survive. From that moment on we put all our faith in the wonderful staff at Great Ormond Street and in God and aimed for success.

The photos below show Rose’s courage, beauty and strength of character. We knew from the beginning that she was a fighter and would do all she could to keep going. We also knew that even in our weakest moments when the pain felt too much to bear, we had to be strong and keep fighting for Rose and also for Tara, to keep our family together. Treatment for Infant ALL is brutal. We watched our darling Rose’s body be pumped with steroids and signed forms to consent to her being given toxic chemotherapy, knowing of the hideous side effects that may follow. We had no choice.

 

Some pictures truly capture the moment. Despite the bald head, the ng tube and the tubes hanging from her chest, Rose is still Tara’s beloved little sister and how she loves her!

 

Rose’s first Christmas! Momentum arranged for us to visit Father Christmas at Painshill Park. This was specifically for the oncology children from Kingston Hospital and their families, to limit the number of people around and consequently the chance of infection.

 

We were so excited to think that Rose would be home for Christmas and so were bitterly disappointed when on Christmas eve she got a temperature and ended up in Kingston hospital. We managed to get permission for Rose to be ‘let out’ for a few hours on Christmas day. I don’t remember feeling any happier than when I watched my two girls opening their presents on my bed on Christmas day!

 

In April 2007, just when things seemed to be running a little more smoothly, Rose became very, very sick. An assumed infection worsened dramatically, resulting in Rose being transported back to GOSH from Kingston hospital by the pediatric retrieval team. She had more tubes put down her nose and mouth and was given help to breath on the way and 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 and 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!

 

Rose continued on a concoction of medication and feeds through her ng tube for a long time. This photo shows the drugs we had to administer at home at numerous times of every day. We never got used to giving Rose this amount of medication and we never stopped thinking of the damage they could be doing as well as the hope of curing her.

 

Another side effect of Rose’s treatment was a horrible skin condition, rather like acne. Despite this, her cheeky nature prevailed, and having done so well, so far, seemed a small price to pay.

 

Rose finished her treatment on 14th July 2008 and she had her hickman line removed on the 27th July.

 

Every day I am grateful to still have Rose with us. I am still terrified of what the future might bring and not a second goes by where I look at her without thinking of the journey she has been on and is still going on. We cherish every moment with her and pray for her continued good health and we also think of the other ‘little Roses’ who have not been so lucky and hope for a better cure in the future.

 

What is Infant Acute Lymphoblastic Leukaemia?

 

To find out more click here.

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Rose wouldn't be here without the blood and platelets donated by kind strangers. Thank you, whoever you are!

 

You can help children like Rose too by giving blood. Click here for more details: www.blood.co.uk

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