Home Sweet Home

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.