Lisa G.
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Home Sweet Home

Lisa G.
Posted by
10 Jan 2016

What it was like bringing my son home from hospital after his diagnosis of acute lymphoblastic leukaemia.

Our stay at GOSH has lasted 2 weeks, but finally, 15 days post diagnosis and 11 days into treatment, we are allowed home.

We prepare to leave armed with a large bag of medication, with numerous leaflets and booklets.  We have a medical kit in case of accidents with Hugo's wiggly, and a blue folder with the rather catchy title of 'Family Held Record - Paediatric & Adolescent Cancer'. 

This blue folder contains all the details of Hugo's treatment, contact numbers, information on his drugs and their side effects, his blood counts and much, much more.  Basically it's a childhood leukaemia handbook, an idiots guide, and we need to carry it everywhere Hugo goes.  It's very detailed, very organised and somewhat terrifying.

I am so delighted to be taking Hugo home, but at the same time, I am nervous.  At the hospital everything is safe.  There are doctors and nurses who know Hugo's condition inside out.  My questions are answered quickly and reassuringly, even in the middle of the night.  The weight of responsibility of looking after him on our own suddenly seems heavy, overwhelming almost.  What if we get something wrong? What if we let him down?  The outside world seems dangerous and scary and all of a sudden my much longed for freedom doesn't seem like such a good idea anymore.

But, sensing my fear, the nurses are once again reassuring.  They tell me I will be fine, that they are there whenever we need them, just a phone call away.  There are hugs and then finally we bid them an emotional farewell.  Well, I am emotional, Hugo is just excited to be going in the lift again!

So much has changed in the time we have been here, we have been on such an enormous journey.  In just 15 days our lives have changed forever and leaving the hospital marks a new chapter in our journey.  A chapter I don't think we could ever be prepared for, but I'm feeling stronger with every step I take.  We can do this, we are doing this.  One day at a time.

28 July 2015

Read more on Hugo's journey at lifeloveandleukaemia.blogspot.co.uk

Comments

11.01.2016

Fantastic blog Lisa which really captures well the completely understandable fears of leaving hospital which a number of parents (and patients) feel when they are discharged.

It sounds like your treatment team were fantastic and really helped put your mind at rest and I'm glad that you found the handbook useful. You mentioned that you found it scary - was that because of the lists of do's and don'ts or was it more because you found some of the information in it complex and difficult to understand?

Thanks so much for everything you're doing with your blog which I think is fantastic as it provides a human insight in to what it is like from a parent's perspective and is also incredibly useful and reassuring for other parents who are going through something similar.

Looking forward to the next installment and wishing Hugo all the best as he continues his treatment.

16.01.2016

Thank you for your kind comments Andy.  It's good to know you think the blog will be helpful to others as that was one of the main reasons for starting it.  The handbook has been really useful.  I don't find it too complex or difficult to understand, I just think it was a bit of a reality check.  It brings home just how serious the condition is and how careful and vigilant we have to be.  At the beginning everything is so overwhelming, seeing it all in black and white just adds to that. However, it's a great resourse and we refer to it often, as well as using it to record Hugo's blood results.  It's less daunting now!