What happens next?
During our last appointment at GOSH, our oncology nurse specialist answered the all important question – ‘what happens when treatment ends?’ I’ve asked many questions relating to this along the way. Always hesitantly, not wanting to look too far ahead,…
Day in the Life – Medication
I often get asked if Hugo is still on chemotherapy. Has he finished, or is he due another cycle? Treatment for blood cancers can differ from other cancer treatment plans. It is often long, in some cases life long, and…
Day in the Life – Bloods
Once a week a community nurse comes to our house to take some blood from Hugo via his bumpy. This blood is then sent to the lab and later that day, or the following day, we get a phone call…
Day in the Life – Steroids
Hugo encounters many different side effects from both the leukaemia and the medication he takes for it, but on a day to day basis, steroids are definitely the cause of the most challenging (which is why they get a blog…
Day in the Life – Hospitals
Hugo started the maintenance phase of his treatment plan in January 2016. It’s the final phase of treatment and is made up of 12 cycles, each of which are 12 weeks long. However, each 4 week block is the same…
Broken Pieces
A couple of weeks ago I found myself at our local hospital. Not a particularly unusual occurrence given Hugo’s situation. However this time I wasn’t there for Hugo, I was there for me. I’d been to the doctors that morning…
My Other Child
A few months ago I posted a photo of Henry on Facebook. We were on a day out, just me and him. A treat day to spoil him a little, because it’s tough when you’re the sibling of a child…
1000 Days
Sunday marked 1000 days of treatment. 1000 days since Hugo was diagnosed. 1000 days of living a variety of new normals. So what does life look like after 1000 days? It has been 6 months since Hugo was hospitalised with…
All About Hugo!
For those who have never met him, here are 10 things about the superstar that is Hugo…. * He is one of only 4% of babies who are born on their due date. It was a speedy labour lasting only…
The Long Version
Over the last few weeks we have had a couple of little blips. Small bumps along the road of our new normal. We have these every so often. I don’t tend to write about them, because everything turns out to…
