THE BLOG
27/10/2015 07:54 GMT | Updated 26/10/2016 06:12 BST

Grandparents as Carers

Although Toni, my daughter, believed there was something wrong with her baby Jordan, from birth, it was not until she was 17 months old that a life changing diagnosis was made.

One evening, she was calling for her Mum with her arms held out. I was standing right in front of her, in silence, but she couldn't see me. We took her straight to the hospital where she walked into walls as doctors observed her. An ophthalmologist saw her and agreed that something was wrong. An emergency appointment the next day revealed that Jordan had cancerous tumours in both eyes.

She underwent treatment for three years and was often sedated twice a day. She relapsed several times and when she was three years old had to have her left eye removed leaving her partially sighted in her other eye.

Jordan's mum and dad separated due to the stress of her illness.

A community nurse referred us to Rainbow Trust Children's Charity. One of their Family Support Workers helped us with travel to hospital appointments - some treatment was every day for six weeks and involved moving from one hospital to another, all in the same day. When Jordan went into remission, we lost touch as we didn't need her help any more.

Two years later, Jordan was diagnosed with Non Hodgkins Lymphoma. She started treatment again but her illness was quite advanced and we were warned that her system had already reached its limit on certain drugs needed to treat her. One morning following treatment, I found Jordan with green foam coming from her mouth. We tried to wake her but she was lifeless. Jordan was rushed by ambulance to the Children's Resuscitation Department at our local hospital where doctors told us that if we hadn't called when we did, she probably would have died. Her little body had gone into shutdown.

She was eventually moved to intensive care and woke up two days later, with no memory. Toni spoke to her and gradually she started remembering things.

Jordan resumed treatment when she was well enough and finally went onto Maintenance treatment. As she was reaching the end of this, Toni, her mum became unwell and was diagnosed with an aggressive cancer. She was given a year to live, maybe two with treatment. We were all completely and utterly devastated.

It was almost too much to bear. Toni underwent intensive treatment, which made her so very sick. A year later she passed away. I still can't find the words to express how we all felt. After all Jordan had been through, to lose her mum as well, was just too much.

We reconnected with Rainbow Trust and Sarah, an Essex based Family Support Worker, started supporting us.

My husband and I continue to care for Jordan but since Toni died, it's probably been the hardest thing I have ever done, dealing with the physical needs of a seriously ill, partially sighted child with so many personal care needs and all the emotions - hers, mine and my husband's. Neither of us is getting any younger and Jordan is now 14 and very active. It is difficult, and I do miss my daughter Toni so very much but Jordan needs me, she needs both of us.

Tony, my husband, and I are trying to prepare Jordan to be independent one day so we are doing everything we can to get her there. It has been a struggle especially getting her the equipment she needs - grandparents don't fill all the criteria that parents do, there are so many hurdles to get over for any help.

Rainbow Trust Children's Charity and Sarah continue to help us. Without them, I couldn't get Jordan to her London hospital appointments, which are so important in maintaining her health and well-being. Jordan's time with Sarah is so very precious. In some ways, Sarah has become like a big sister and friend to Jordan. She gains so much from her time spent with Sarah - she has relaxed and is now so much more confident with and because of Sarah.

Rainbow Trust makes you feel that there is help, support and hope at the end of their 'Rainbow'. Sarah is a treasure and we don't know what we would have done without her.

Please support families like mine by taking in part in Rainbow Trust's campaign by visiting www.rainbowtrust.org.uk/big-hour or call 01372 220013.

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