Managing the Fear

One of the many negative things that we were told when Evie was first diagnosed is that people with Down’s syndrome are more likely to have leukaemia than other sections of the population. The information provided tells parents that the risk is many times more likely that your child will develop acute lymphocytic leukemia (ALL) or acute myeloid leukemia (AML) for those with Down’s syndrome. Not a reassuring piece of information when you’re cradling your beautiful newborn child.

Interesting it seems that those with Down’s syndrome according to recent research have a higher ability to fight off and defeat this cancer.

Since being given that information we (as I’m certain most parents will) have pushed that nugget to one side, only to revisit it in the darkest of hours.

Evie has been most unwell of late. For the last few weeks she has struggled. There have been many symptoms which have caused her dad and I concern…night sweats, a skin rash, lethargy, high fevers, reduced appetite, sickness, dizziness (from what we can gather from her behaviour), pale skin, repeated infections…generally just not being herself.

At first I thought it was attributable to her thyroid levels being off…apparently not.

Then she had a chest infection, a virus and a throat infection in rapid succession.

The night sweats I tried to explain away with it being her reaction to her thyroid medicine – levothyroxine.

The spots caused by a viral rash.

The lethargy caused by her thyroid.

The repeated infections due to the bizarre weather we’ve been having.

Yet when antibiotics haven’t cleared the infections, when she seems to have gone from one illness to another, I’ve felt increasingly concerned. Whilst not wanting to be the over anxious mother, I’ve kept popping back to the doctors to try to get a resolution.

I’ve tried not to fret but failed miserably at that. So this week back to the doctors we went again. I discovered last week that I have had glandular fever recently, as such I queried if this was the possible cause for Evie’s ill health.

Blood tests were taken yesterday (if only it was THAT easy!!) and glandular fever has been confirmed today.

What a massive relief!!

Who would ever imagine that I would celebrate Evie having Glandular Fever?!

I could dance with happiness. It could have been much much worse. Yes my poorly pudding is unwell but it is manageable.

As a parent you never quite realise how much fear you hold inside when your child is unwell. I’ve sat on this fear for several weeks, never daring to admit to anyone what my fear was. If I vocalised it, it may have been true.

Many years ago after a particularly terrible run of luck in our family, a period that would have been unbelievable to even Eastenders’ most imaginative scriptwriters, I learnt to never vocalise my fears. Never to say that nothing else bad could happen as at that time, it did keep happening. Keeping my own counsel at times like this has been my saviour.

Today when our lovely doctor phoned to give me the results, I felt such relief. I knew that I was afraid but not how afraid until that moment. Hugs all round and treats to celebrate. I’ve said so many times how Evie has saved me after we lost her brother. The terrible thought that we could lose her whilst never truly recognised to anyone but myself was definitely there, eating away inside me.

Overreaction? Possibly. Understandable? I would say so.

To lose a child is the worst pain imaginable. It’s the wrong order of life. Parents should not outlive their children. It will always be my greatest fear.

Now we can breathe and move on. Get our little one better and have lots of fun as soon as she is well. Summer 2016, you may be delayed but it’s not over yet! We’re coming to get you!

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4 thoughts on “Managing the Fear

  1. Totally get the non vocalising kirsty ( done it myself )and you must have been beside yourself with worry until the *happy* relief from your doctors telephone call. Its impossible to describe that particular feeling when you realise your worst fears have been washed away.You’ll soon get your poorly pudding well again and make summer 2016 fantastic cuz that’s you!

    Liked by 1 person

  2. I love your blog. Evie sounds like such a lovely girl. I have a brother with DS who is 23 next month and my son was born with DS too. Sending you lots of love and hope the fever passes soon x

    Like

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