Claire Crowley’s son, James, was diagnosed with leukaemia in November 2014. She describes the challenges of feeding James while on treatment and the nutrition support he received.
Feeding your children is a primary responsibility of parenting. It’s one of the basic human needs that our little ones need us to provide for them. So, when it’s challenged - because of a cancer diagnosis - we can sometimes feel like we’re failing, but this simply isn’t true.
James has Down’s syndrome and has always had difficulties with food. In fact, he needed an NG tube for the first 11 days of his life as he struggled to feed. By the age of seven, he was typically eating Weetabix, baby food pouches, smooth yoghurts, Heinz fruit puree pots and cheese Wotsits. As well as having a small mouth cavity, children with Down’s syndrome often have low muscle tone, making the tongue appear too large, which can affect eating development. James also has sensory processing difficulties and is genuinely frightened of new foods (and oral medicines).
So, when he was diagnosed with acute lymphoblastic leukaemia (ALL), I immediately requested an NG tube, surprising everyone. Don’t get me wrong, I don’t love them, but they are a pretty clever way of putting foul tasting medicines into the stomachs of children who feel sick because they’re on chemotherapy! Bypassing the tastebuds in the mouth is most sensible.
Anyone who has managed an NG tube knows the battle when re-passing a tube (they come out too easily when chemo causes vomiting), the tape hurting the face and, of course, the tube not aspirating when you need to do a pH test (resulting in a trip to have an X-ray and possible repositioning or replacement). But what they do give you, is the ability to feed your child at a time when they need good nutrition to cope with treatment.
If you are watching your child suffer with weight loss, vomiting and a lack of appetite, don’t think in any way you’re failing, because you’re not.
Other than tiredness and some visible signs of low platelets, James didn’t seem too poorly when he was first diagnosed – that was, until he started his chemo! Within a week, he was being sick regularly, struggling to eat and needed Peptamen feeds via his NG tube to supplement his calories and fluids. Just over a fortnight into treatment, his cold sores and mucositis were so severe he needed lots of pain relief as well as complete gut rest and was put on total parenteral nutrition (TPN). His mouth was so sore he even stopped talking.
Watching him lose so much weight in that first few weeks was petrifying. His muscles wasted away, and he turned a pale shade of grey. But, with the help of his NG tube, James continued on treatment and gradually gained weight.
After about eight months, we had a traumatic weekend where we simply couldn’t re-pass a new NG and he ended up going into surgery for a gastrostomy. He had his inserted via keyhole surgery, so I’ve never referred to it as a PEG (percutaneous endoscopic gastrostomy). Once it had settled, it was replaced with a low-profile gastrostomy button (he now has a tummy button close to his original belly button). We had some problems with over-granulation initially, but a surgeon cauterised it (burned it off) and it has been pretty much trouble-free ever since. He can bathe and swim with it and at night I attach an extension and plug him into an overnight feed. I buy fabric button pads which absorb any moisture from the stomach (which is acidic).
It’s so important to remember that if you are watching your child suffer with weight loss, vomiting and a lack of appetite, don’t think in any way you’re failing, because you’re not. But do embrace the medical options - these devices are designed to help us care for our kids while they go through treatment.
From Contact magazine issue 101 - Winter 2023
