Today is a day like any other in our ward. It’s the weekend, so it’s slightly quieter, but still the parents gather in the kitchen for a catch up, the Nurses and Doctors do their rounds and the eternal ideas to keep Ben busy with Minecraft, Movies, Lego, reading, laughing, eating and drinking continues. He’s not eating so well today, but that’s to be expected. His fluids are good, so that’s something to be thankful for.
Yesterday, he had a platelet transfusion and today, he’s had his antibiotics and at the moment, all is well. It’s a good day.
We have been overwhelmed by the love and support shown by friends and family at the start of this journey and the response to the blog has been so wonderful. Your messages of support are really giving our family the strength and positivity to keep going.
Many of you have sent personal messages to myself and James asking what you can do and there is something I’ve just spoken to Ben about. He would absolutely love to receive postcards, letters, pictures from all around the world. Tell us what you’re up to, offer a word of support, a kind word, tell us something exciting or something funny. Every ten year old wants to have fun and laugh the day away! Get in touch. I know this will benefit not only our boy, but his sisters, too. Let’s live in gratitude and see what we can achieve!
In addition, many of you have also discussed the possibility of registering as a bone marrow donor and for those 30 and under, please go to www.anthonynolan.org or for those over 30, please go to www.dkms.org.uk/en/register-now
I know I’ve already said this before, but this journey wasn’t on our radar. We have helped others over the years and never imagined for a moment, it was part of our family’s story to be going through this journey and yet, here we are. Anything you can do to help, from writing, sending hope, letters, pictures, ideas for him to create a new Lego alternative build … even your own alternative builds! Go for it!
Ben is in Piam Brown Ward for the moment, in Southampton General Hospital, Southampton, Hampshire SO16 6YD.
We’d really love to hear from you! xxx
Lovely to read your blog and to hear how you’re living this experience all of you. It must be totally weird to be thrown into this alternative world but it sounds like there’s great support and so much hope and successes around you all which must be very uplifting.
I’ll look at something to send Ben and the girls to let them know they’re loved by us, I’m sure they’re going to be inundated! Love and hugs to you all from me, Steve, Tom & Louis
Maybe Ben might like to get involved in the new stone decorating craze and create himself an FB page. Paint and hide some stones with something like #Bensepicjourney set up an FB page with the same name. When people hide them they take pictures and post them and then re hide the stones. Stones travel far and wide so might be exciting to see where they end up. You could start by giving them in the hospital grounds.
Can check out some sites already available like Hidden Rocks, Love on the rocks Uk. There are lots