Hannah Longstaff’s daughter, Matilda, was diagnosed with acute lymphoblastic leukaemia (ALL) in February 2022, aged three. She tells us how Matilda’s appetite increased after being put on steroids and about the support she has received.
I think for all oncology parents, hearing the word ’steroids’ makes the hairs on the back of your neck stand up. This is the case in my house, anyway. Children with cancer already face so many rigorous side effects of chemotherapy, but on top of that, they also have to deal with a whole host of other side effects from other medications they may be on, such as steroids.
We have a very complex relationship with steroids in our house. As part of her treatment, Matilda has a five-day course of dexamethasone twice daily, every four weeks. On one hand, we’re grateful that they get our daughter Matilda eating and thankful they’re helping to fight the cancer. However, the challenges of the accompanying side effects have really hit us hard. These haven’t just been perhaps the more commonly known side effects like ‘roid rage’ and tiredness, but Matild has also experienced a massive increase in appetite. The sheer amount of food that’s consumed during those five-day courses is enough to feed a bodybuilder for a week!
The cravings from the steroids can arrive at any time, and I often find myself cooking pasta and pesto at two in the morning for a very ‘hangry’ little five-year-old. Matilda’s ‘go-to’ food while on steroids is eggs. This could be in any form, from boiled to scrambled, fried to poached, and we’re often finding ourselves getting through 30-40 eggs in a five-day period. The increase in appetite was a shock to the system, especially in the induction phase of treatment because she went from losing weight from not eating, to having an insatiable appetite and we just couldn’t fill her.
If I could offer some advice to other oncology parents navigating their way through treatment, it would be to take everything one step at a time.
We received support from the hospital dietitians on how to try and maintain a healthy balanced diet, which was really helpful. The dietitian suggested eating three healthy meals each day along with snacks that were more filling. Having regular meals rather than having lots of smaller snacks throughout the day would help Matilda get the nutrients she needed. It was suggested that quick and easy healthy snacks to have on hand when needed, such as cucumber, carrots and celery sticks with a dip, boiled eggs and nuts, was a fun way to provide a filling, healthy snack. Trying to limit processed foods such as fast foods, cakes and sweets was recommended, too, though sometimes this could be difficult because when Matilda wasn’t eating we just wanted to give her calories, no matter the form or nutritional content.
Matilda is now five years old. She’s 19 months into treatment with six months left and doing well. She’s recently started school full time and is coping really well with this new change. Her school has been amazing with helping to accommodate her food cravings while on steroids.
They’ve allowed Matilda to bring in her ’super snack pack’ and keep it safely refrigerated in the kitchens to make sure any food that’s taken in is stored safely due to her immunocompromised state. They’ve also set up a little area called ‘The Hive for Matilda’, where she can go if she’s feeling stressed and overwhelmed while on steroids. Matilda also has support from teaching assistants, so if at any time she needs a rest or a snack in the hive, she can do so straight away. The support from the school has been incredible and Matilda has really started to thrive in this environment.
If I could offer some advice to other oncology parents navigating their way through treatment, it would be to take everything one step at a time. It’s going to be difficult, but there’s support out there if you need it.
From Contact magazine issue 101 - Winter 2023
