What Hugo Did Next
On the 18 September 2018, after 3 years, 2 months and 5 days, Hugo finished his treatment for Acute Lymphoblastic Leukaemia. 6 weeks later he had his port-a-cath (bumpy) removed and rang the End of Treatment Bell at Great Ormond…
End of Treatment Bubble
It has now been three weeks since Hugo took his last dose of chemotherapy. So what does life on the other side look like? In many ways it doesn’t look very different to life on treatment. There has been medication…
Day in the Life – Side Effects
During the early phases of treatment Hugo suffered with many of the side effects synonymous with cancer. His hair fell out, he was sick, tired and pale. He lost weight, his light dimmed and he looked ill. Now, in this…
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…
Bring it on 2018!
So, we have reached 2018, the year Hugo will finish treatment. It feels significant. The countdown can well and truly begin. I remember, just after Hugo was diagnosed, reading that treatment for his type of leukaemia would last just over…
Bumps in the Road
We are plodding along. What seemed so strange and scary at the beginning has somehow become normal. There is a new standard to measure by and everything is fine, by this new standard, good even. Until it isn’t. Until there…
Screw you Cancer
Last night I sat in my son’s bedroom and held him in my arms as he cried in pain. His hip hurt and he couldn’t find relief from it. I tried desperately to help. I rubbed his hip, wiped his…
What is maintenance all about?
We have now reached the end of our first 12 week cycle of the maintenance phase. We are slowly adjusting to another new normal, one that will last a long time. So what is maintenance? As I understand it, during…
Tough Days
We are now halfway through phase 4, delayed intensification. Hugo has finished the second week of steroids, which again saw disturbed nights with painful legs and tummy. He has been completely wiped out and has spent most of the last…
A Badly Decorated Christmas Tree
We are currently 17 days into phase 4, delayed intensification. During that time Hugo has had 5 scheduled hospital trips and 9 different drugs administered in a variety of ways. Yesterday saw his third and final doses of strawberry juice…
