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…
Delayed Intensification
After a nice little treatment break Hugo has now started phase 4, delayed intensification. Having had a break from drugs and hospitals, I have been feeling quite apprehensive about starting again. We enjoyed having a little certainty in our lives…
Raising the Bar
Today sees the end of phase 3. Another one down, go Hugo! I gave Hugo his last dose of mecaptopurine earlier this week. He will have to resume taking it in a few weeks, but for the moment it’s off…
Roar!
Hugo and I are currently at GOSH for his last high dose of methotrexate. We are on Lion ward this time, rather than Giraffe ward as usual. The nurses on Lion ward are of course lovely too, but I am…
Wonderful Giraffes
Day 95 of Hugo’s treatment sees up back at GOSH for high dose methotrexate round 3. As usual we receive a warm welcome from the wonderful nurses on Giraffe ward. We have been on Giraffe ward for all of our…
Relishing Normal
We have been having a lovely normal week at home. We’ve had the car serviced, been to Henry’s parent’s evening, I even managed to get my hair done. This is excitement these days, getting to be normal. In a couple…
A Constant Supply of Gingerbread Men
Since this journey began, I’ve found myself on occasions drifting into a kind of glazed daydream, pining for all the things we are missing out on since Hugo was diagnosed. I don’t want to feel sorry for myself, but sometimes…
A Mini Break
We have just experienced our first unscheduled hospital stay. I suppose this is what we have been waiting for ever since we came home. I suspect we are lucky to have made it this long. Infections are a very serious…