False Start
So today we set off to GOSH for the start of the maintenance phase. Hugo’s bloods were taken on Friday and they were still a little low, but we’d checked with GOSH and they were confident they would increase enough…
Bye Bye Delayed Intensification
Delayed Intensification, phase 4, is over, woo hoo! Unsurprisingly, Hugo and his daddy managed just fine with the blood transfusion. The colour is slowly returning to his cheeks and his energy levels that were so zapped during phase 4 are…
A New Kind of Strength
So, as predicted, Hugo needs a blood transfusion. He’s done well to get through Christmas and into the new year, but his luck has run out and it’s a visit to our local hospital for him today. Henry has a…
Restoring a Little Balance
Welcome to 2016! Well we nearly welcomed in the new year from a hospital bed – another narrow escape. Hugo’s temperature went up during the early evening. It wasn’t quite high enough for immediate action so we kept an eye…
So this is Christmas
It was a close call, the week leading up to Christmas had seen 4 hospital visits, only one of which had been scheduled, but we made it through Christmas with no hospital stays, yay! Hugo’s wiggly managed to work for…
Phase 4 Part 2
So we are now in the second part of phase 4. Along with the cyclophosphamide, Friday’s visit to GOSH saw us restarting the dreaded mecaptopurine. Another 2 weeks of the yucky, nil by mouth chemo that Hugo really dislikes. In…
He’s Back!
Hugo is back! After a week or so of being completely wiped out, he has turned a corner. Somehow he has summoned some energy and is seeming much more like his normal self again, minus the hair. It’s a huge…
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 New Altered World
Today was not a good day, today was pretty awful. Today Richard had to go into work early. This meant I was on my own with the boys, rushing around trying to get us all ready and out of the…
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…