A Mother’s Story

Perhaps I should introduce myself – I am Pauline, Harvey’s mother, and reading his recent Blog brought back all the trauma and anguish the family felt in March 2001 when he was diagnosed with CML.

I thought it might be interesting to put down on paper a parent’s emotions when a killer disease ‘hits’ the family.

Both his Dad and I had been aware for some time that Harvey was not 100% fit, but he always had a way of not telling us everything that was going on until he really had to.

For example, when he fell and lost a front tooth the first day at University; or when he and a friend went to the help of one of his employee’s at the time who was being beaten up by two squaddies, who then turned on them and both Harvey and his friend ended up in hospital. In both instances we were told some three days later.

However, I digress. We knew something wasn’t right when he told us he had been prescribed tablets and an inhaler for asthma. He had never suffered from asthma or breathing difficulties, but when we queried it he said he felt a bit better.

His Dad and I were both working full time in March 2001 when Harvey said he now had a problem with his eye and had been referred to hospital as an emergency case.

As Harvey, thoughts of glaucoma (which his Grandma has) immediately sprang to mind, although his other symptoms didn’t really belong. The shock, then, when Fiona rang next day with the diagnosis was devastating.

Neither of us realised the full implications of the problem until we had a meeting with the doctor and were basically told that, without treatment, Harvey had at most five years to live.

It was as if my heart had been wrenched from my body – I felt guilty – it was all my fault – what had I done wrong? Although the doctor insisted it had nothing to do with either his Dad or I – it was not hereditary – I was not convinced. Perhaps I had done something when I was pregnant. I had had a scan to find the position of the baby, using a radioactive isotope – that must have been it! The doctor said, NO.

Our thoughts then immediately went to what we could do to support Fiona and Imogen through the next few months at least, until things were sorted out.

The joy of being told we were to become Grandparents for a second time were sadly overwhelmed by other events and I know we did not give Harvey and Fiona the hoped-for joyful congratulations at the news.

We knew we had to be strong for Fiona (who would not accept any sympathy or cuddles – ‘No, please don’t – I have to be strong’). AND SHE WAS.

I really admired her strength of will and determination – she was amazing.

During the first few days after the diagnosis, I cried myself to sleep at night, knowing that I couldn’t cry in front of Harvey or Fiona – I had to appear strong even though my heart was breaking.

He might be 30 years old, but he was still my baby. I wanted to cuddle him in my arms and make it all go away – but I obviously couldn’t.

As Harvey has reported it was quite a roller-coaster ride of hope and disappointment until he finally received the news that the insurance company would pay for his Glivec treatment. I will never criticise insurance companies again!

Once on the treatment, we could see a slow but gradual improvement in his health and strength and our thoughts now turned to the birth of our second grandchild.

Although we had been assured that the child would have no defects or health problems as a result of Harvey’s CML, until the baby is born you are always worried.

Happily, Livvy was born perfect and is now a bonny, bouncy, healthy 8 year old frequently annoying her elder sister as all younger siblings do!

Harvey, Fiona and the girls can now look forward to the future with renewed hope – thanks to Glivec and Leukaemia Research.

I will be supporting and fund-raising for Harvey’s Pennine Way Walk and hope, at some stage, to walk – at least part – of a stage with him.

This is the least I can do if it will help fund research to enable other families to benefit from improved treatments for CML and other forms of leukaemia.

Pauline

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TeaHee Easingwold North Yorkshire

One response to “A Mother’s Story

  1. Anne Hutchinson

    Dear Pauline
    My son aged 32 was diagnosed with CML a few months ago. I felt so alone (although reason told me I wasn’t) and it was heartening to read your account and to know that there is indeed hope for a good and long life for our children.
    I hope all is still well with you and your family and that Harvey continues in good health.
    Anne

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