Who We Are

 

We are a normal family who have felt the effects of a child brain tumour first hand, our daughter Indee Rose was diagnosed with a brain tumour at three years old. We know that it not only effects the child and the immediate family but everyone - extended family, friends and the local community.

 

Our Story

 

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Our journey began on the Wednesday 14th January 2009, Indee was enjoying a normal day at her Nanny's house.  Indee's nan noticed she was not using her right arm properly,  so she called us both and we decided to collect and take her immediately to A&E at Basildon Hospital to find out what was wrong.  The doctors and nurses began tests immediately.  Indee was not complaining of any pain or discomfort, even though her walking and movement in her right side wasn’t working quite right she would just want to go to the toy room where she happily played.

On Thursday the 16th January 2009 is when our nightmare began.

Indee was kept in hospital and monitored by the kind nurses in the Wagtail ward until she had an MRI scan. That night we were called in to a meeting with the doctors and told that there was a large shadow on Indee’s brain and we were referred to Great Ormond Street Hospital (GOSH) on the Sunday for a further MRI scan. At the GOSH the results came back and confirmed that Indee had a brain tumour.  This tumour was called a 'brain stem glioma', an in-operable tumour growing within the brain stem.  A plan was made for Indee to start six weeks of radiotherapy and to take the trial drug Temozolemide, an oral chemotherapy drug and a steroid drug.

Throughout Indee’s five month journey, during her treatment and trips to GOSH and University College London Hospital (UCLH), we were amazed at the way Indee took it all in her stride and literally laughed her way through it all!  To the point in which one of our night nurses at UCLH, Bethan, would purposely leave her door ajar so they could hear her laughter on the ward.  Indee showed no fear and she made this horrendous journey so much easier for us all.

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Taking Indee down for her radiotherapy every morning was another play time for her, we would make pictures and draw funny faces while waiting for “our turn”.  We always had a teddy with us who Indee believed had to be put to sleep with her everyday but Indee would always insist she was going first.   Indee was put to sleep in seconds through her 'wiggle' (that’s what we named her hickman line), we would kiss her and leave her alone with the radiotherapist. Half an hour later we would wait for her to wake up and half the time she would still be dosing from the anesthetic but we would be in big trouble if her favourite things were not set up! Daddy's cream cake, chocolates and a cup of tea and biscuits all had to be at her bedside waiting for her.

We spent six weeks living at UCLH and we were lucky to have had our own room, as the weeks went by we slowly decorated the walls with cards and the pictures Indee had painted, we had so many good times and Indee enjoyed herself.   We had a great physiotherapist at the hospital and with a lot of hard work we managed to get Indee to use her right arm and leg again, she regained near enough normal strength which amazed us all.

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We have some great memories of UCLH, the nurses there were incredible, especially Annette, Indee adored her and they had a great friendship.  We met some wonderful children during our time on in UCLH, one in particular was Indee's favourite playmate, Angela, they had so much fun and spent most of their time together, dressing up as fairies, pushing their prams up and down the corridors, you could always hear those two coming!

Indee's treatment finished on the 13th of March and we were free to leave and go home.  It felt very strange leaving the hospital that had been our home for the past six weeks but our lives had to carry on.  Indee was so well and her movement was back to normal, she looked and felt great. During our break we decided to spend time at our holiday home, taking long walks on the beach and just had lots of 'fun time' together.

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During her break in treatment, Indee was just like any other little three year old she loved spending time with her big brother Finley who she adored. Abbie and Samuel her best friends, played every day with her just like before, in the garden getting dirty, dancing, dressing up and playing teachers, everything was great. Our family all saw the big change in her and she went back to spending time at both her Nan and Grandad's house's.

During our break we kept positive, we spent many happy days with Indee and our family and have some wonderful memories that we will treasure forever.  Sadly, Indee's tumour returned and Indee deteriorated over the next month and passed away on the 6th of June 2009, five months after her original diagnosis. 

With the help of our family and friends we managed to keep a positive attitude and we believe this made a big difference to Indee’s wellbeing throughout her treatment.  Indee is such an inspiration in our lives and we decided in her memory to set up 'The Indee Rose Trust'.

Indee Rose, our beautiful, cheeky, happy little girl who has taught us how to laugh, cry - but most of all to love.  She brought us much joy and happiness, everyone who knew Indee would agree she lit up a room and her laughter was infectious. Indee truly was the light of lives, we all miss her so much and there will always be a huge void for us and everyone around us.

 

The Indee Rose Trust

Indee Rose Treasure Box

We provide Treasure Boxes to children who have been hospitalised whilst
receiving treatment for a brain or spinal tumour. A wonderful box of treats created especially for the child. We also provide a one off grant to help the family at this difficult time.

Holiday Accommodation

We offer holiday accommodation for a family break when the child has completed their treatment. We feel this allows the child and their close family some precious time alone just as we did with our Indee.

Support when you need it

We are always ready to listen and offer you our support. We are not counsellors just a normal family who will understand your worries, concerns and offer support when you need it at anytime.

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