Bristol Ready

This weekend, we are heading to Bristol.

It’s been such a blur, this summer and this next few weeks will doubtless be the hardest part of Ben’s Epic Journey … but we have learned so much along the way and we are so grateful for all the love and support we have received from friends and family, from completely dedicated nurses and consultants and the incredible families we’ve been privileged to meet along the way.

Ben is in a very good place mentally and not too bad physically either.  He’s not been eating the best diet in the world, but he has been eating, which is good.

We are currently coping with the practicalities of getting ourselves to Bristol and tidying up at home, packing what we are allowed to take for the ward, managing the works at the house and trusting we’ve got everything taken care of as we move into the next phase of Ben’s recovery.

The impact that a situation like this can have on a family and especially on the siblings, can never be overlooked or underestimated.  All the focus has to be on the person who is going through the treatment and it’s tough on your time and energy. You do your best, but it’s not always easy. We currently have a charity coming in to offer us support on an emotional and practical side, which is wonderful and will be on-going for the time being.

There are days when you feel so isolated going through this, but in lighter moments, you have this amazing hope for the future, knowing it will be different and hopefully so much better.

For the most part, you live in gratitude; gratitude for the magical moments, for the cuddles, the moments you get a giggle, a roll of the eyes from your daughter as you say something really ‘silly’ again to lift the mood; the moments watching Dr Who with your boy, as he strokes your hair and gives you a kiss on the cheek just because he wants to; and bouncing on the trampoline with your youngest, because she has you with her for a few minutes and just wants you to play and have fun before you head back to hospital. It’s those moments you treasure.

I can’t lie, it’s all a bit scary and feels a bit bigger than us at the moment, but the upside of facing our fear head on, is the fact that Ben will effectively regenerate in a few weeks’ time like our very own Dr Who and be … a bit of a super hero in my eyes actually.

The rest of us are all flu vaccined up and are looking forward now to Ben’s transformation back to a happy, healthy and energetic young man. The short burst of cycling along the sea front in Southsea with his Dad and few times in the Physio room have helped over the last couple of weeks in that process for sure.

Though we are only part way through this journey, we can’t thank the staff of Piam Brown in Southampton and Starfish Ward in QA, Portsmouth for getting us all this far.  The laughs, the care, the hugs, the support, the complete dedication to our boy and our family during what has been quite an extraordinary existence, has been overwhelming and we know the team in Bristol waiting for us, are also amazing and we’ll be there for some time now under their care.  Thank you for keeping us in your thoughts and for sending us positive and healing energy.

Stem cell donation is so important. We were lucky enough to find our magical match and words cannot describe how grateful we are for that individual’s kindness.

If you can do it and you’re fit and healthy, please think about registering with www.anthonynolan.org or www.dkms.org.uk

I can never truly express the gratitude as a parent when you finally hear those words, ‘yes, fully-matched donor,’ but my heart is full.