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 relief and while we know this phase is not done with us yet, we are grateful that we get our little man back for a while.
It happened just in time as it’s been a busy couple of days. Yesterday Hugo’s wiggly decided it didn’t want to give out any blood. The nurse tried several times, but to no avail. It was the first time we’d experienced this. Sometimes it can be a little reluctant, but after a bit of tweaking and some arm flapping from Hugo, it usually gives out the good stuff. But not this time.
The nurse managed to get enough blood from a finger prick, but wiggly needed to be sorted so a trip to our local hospital was necessary. Unfortunately there was a series of events conspiring against us which meant our trip lasted 7 hours. The original blood sample clotted meaning it was no use and a cannula had to be put in his hand to get a fresh sample. This took me right back to those early days immediately following diagnosis, when they struggled so many times to get one in. The tears we both cried, how scared we both were at what was happening and by the news we were still processing. Fortunately this experience was less traumatic and it actually served as a reminder of how far we had come since then.
While we were there Hugo got to meet some Tottenham football players who were visiting and giving out presents to the children. I’m more of a West Ham girl myself, but it’s great that these players give up their time to visit hospitals and help brighten up children’s stays. Hugo loved his present and it certainly made the waiting around more interesting until wiggly was eventually unblocked.
The much struggled for blood sample showed that Hugo’s counts had recovered enough for him to continue with the next part of phase 4, so today saw us back at GOSH for a new, one time only, chemo drug called Cyclophosphamide. It’s a 30 minute IV, but it has to be accompanied by 4 hours of fluids, meaning 4 hours and 30 minutes in all. Another long day for us, but this time Hugo got to meet some visiting Red Arrows. Another group of lovely people bringing a little joy. It was also Christmas jumper day so everyone was in a fun Christmas mood.
As we approach Christmas I feel myself getting a little nervous at the thought of spending Christmas in hospital. I’m doing my best to be relaxed about it all, but our ‘one day at a time’ approach is being tested somewhat. I know we will deal with whatever happens, but the not knowing is difficult to handle. I keep telling myself it’s just one Christmas, if it’s not perfect it doesn’t matter. We will all be together, wherever that might be and that is all that’s important.
