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 all to themselves!). He takes a 5 day course every 4 weeks, alongside the IV chemotherapy (together they are referred to as ‘pulses’). The effects differ slightly each time and we never know quite what we are going to get from month to month. Some months they seem to hit harder and others we feel we have gotten off lightly.

I know they effect different children in a variety of ways, but for Hugo the most common effects are tiredness and sensitivity.  Sometimes he is angry and, heartbreakingly, sometimes he is sad. He is often irritable and the slightest thing will upset him, either putting him in a mega strop or causing him to burst into tears. His moods swing and change like the flick of a switch and they all seem to be magnified, often we feel like we are walking on eggshells afraid to upset him.

We spend much of steroid week cuddling.  He likes to sit on a lap and play with someones hair.  Sometimes he falls asleep in the middle of the day, other times he is hyper and full of energy. 

They also have an impact on his physical appearance. The water retention can make him look puffy and they cause him to carry weight in his cheeks and on his tummy. It is quite common for children on steroids to have very round faces, and I can now often recognise this with the children at the hospital. It will be interesting to see the changes in him once he finishes treatment.

Generally we find that keeping busy and distraction help, within reason. If it’s too busy then the tiredness becomes too much for him. However there are certain things we avoid during steroid week. Birthday parties are not much fun and we have learnt the hard way that we should book any holidays outside of steroid week!

The only positive effect is that they often give his appetite a boost towards the end of the course.  He eats more and is often more willing to try different foods. Unfortunately this is often accompanied by upset when we have run out of the particular food his tastebuds have decided to obsess upon that month.  Or he is hungry, but can’t decide what he wants and instead wanders around the kitchen opening cupboards in the hopes of finding something that takes his fancy. Emergency dashes to Tesco are fairly common during steroid week. However, the upset is worth it to see Hugo tucking into platefuls of food. We spend the rest of the month desperately trying to get him to eat, so to see him eating well is fantastic.

Hugo tucking into his 3rd portion of rice at 10.30am!

I suspect he finds much of steroid week confusing. He’s too young to articulate how he is feeling and I imagine most of the feelings are alien to a young, fun loving 5 year old. We all take a deep breath at the beginning of steroid week. It’s a tough few days for all of us, we are invariable exhausted from coping with his moods and tired from the lack of sleep. The toughest part though is undoubtedly seeing Hugo sad. Knowing he doesn’t understand his feelings. Thankfully it is only a few days each month, but it’s not right. It’s not how it should be. We will not miss steroids!