News & Events

Like a small boat on the ocean

Last Reviewed 17/07/2016

By danielle myers - swan uk member and blogger

I have been hit by writer's block once again with so much going on in my life recently; to know exactly what to blog about and where to start is a headache in itself.

Hearing Dylan belly laugh for the first time in almost a month is the only inspiration I need …

From losing his independence because of a nasty arthritis flare up, to having multiple viruses leaving him lethargic and lifeless, to now hearing him laugh makes me feel all warm and gooey. The love I have for this helpless child is indescribable.


So the hot question I have spinning around my head is ……

'Why the hell do we keep putting him through all these (unnecessary) intrusive procedures?'

For every General Anaesthetic attacks his already compromised immune system, leaving him prone to more illnesses. Meaning his already compromised life expectancy is at risk. Having so many underlying illnesses means every time he’s attacked by a virus or an infection all of Dylan’s problems decide to rear their ugly little heads and upset my boy and us all.

And for what????

Every parent of an undiagnosed child can almost certainly guess the outcome of these investigations we put our poor innocent children through.

'Unfortunately Mr & Mrs Dylan’s parents the results of the recent test show nothing’s wrong.'

Hmmmm obviously there is something wrong for my beautiful little boy, who is approaching his biggest mile-stone to date, his 6th birthday, is stuck in the body and mind of a baby.

Yes he has 10 perfect fingers and 10 perfect little toes but he also has more than:
20 horrid diagnosis,
Is under 15 different teams at Great Ormond Street Hospital
Has four different Clinical Nurse Specialists,
Is on 15 different daily drugs,
Has one weekly subcutaneous (chemotherapy) injection,
and one weekly infusion
all that’s missing is his Partridge in a Pear Tree – his overall genetic diagnosis.

So yes something is obviously bloody wrong.

Every suggested investigation brings so many emotions.
At the beginning we thought

‘we shall put him through this xxx procedure as it will give us the answers we are seeking’

To the next investigation:

‘the last test was wrong now we will get our the answers we are looking forward’

to

‘the last 20 tests couldn’t have been performed correctly at least now we will get out answers’

to now, after more than 50 different investigations my left and right side of my brain have its own conversation;

(left side of brain pipes up) ‘is there any point putting him through all this again to not get any answers’

(Right side of brain debates) ‘but this might be the test to answer our prayers’

 

In the mean time if Dylan spends a whole month, following one of these procedures with his health deteriorating and being rushed back and forth to A&E is any of it actually worth it???


So the real question is when do we say enough is enough??

It’s not giving up is it??
It’s just letting Dylan live with his Undiagnosed Condition for as long as he’s able to and continue to let him belly laugh over the silly little things that make him the happy little chappy he is.

But please, do not judge me when you read on Facebook later this year that Dylan is undergoing yet another (pointless) investigation. As you never know, “dreams can come true.”

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