Mum & Dad
17 Augustus Gloop
Updated: Jan 14, 2022
We have touched in previous blog posts how important Masons nutrition has been throughout the year and wanted to take a brief moment with this post to open up about some of the things that went well. We are not nutritionists or have any fancy post nominals confirming we’ve studied whether cucumber is healthier than Haribo but we found a few things that seemed to work so we wanted to share.
Leading up to Masons first birthday he led a fairly healthy lifestyle, milk, milk, some more milk before being weened onto fruit and veggie smoothies and then onto some solid foods. Devoid of all the best things in life such as sugar, salt, fats & spice, but he was content. He would occasionally deviate and grab some of his sister’s food and try it before going ‘uurrhhhh’ and try and give it back or throw it on the floor. We had a nice little routine, he was kept watered and fed, growing and gaining weight in line with the graph that our health visitor would compare him to. Happy days.
Fast forward a couple of months and we were in the face to face with our oncology consultant discussing Masons chemotherapy treatment plan, focusing on its advantages whilst touching on some of the uncomfortable challenges. One of those main challenges would be his weight, and being able to retain it. Weighing in at a grand 8kg, he didn’t have much scope to play with. They explained, if he can retain his weight throughout the course of treatment, thats a big thumbs up, if he struggles to eat and he loses weight below a certain point then it would be critical to support him with nasogastric (NG) tube feeding to maintain his energy.
Do a quick google search and you’ll find it’s a tube going in through the nose, down to the stomach which drip feeds, fluids and food directly to the stomach. Patient doesn’t have to think about eating it just provides nutrition. We can clearly see that for most it can literally be a lifesaver, though we began to actually see how challenging it can be for some of the youngsters. Speaking with other parents, they would frequently mention how their little one is having difficulty with their NG tubes, that they’d find it awkward, irritating, and drive them to want to pull it out, often causing them to gag and vomit, which is the counter-intention. I think that having these conversations made us more determined to channel Masons inner ‘Augustus Gloop’.
The chemo drugs Mason received would likely change his sense of smell and taste, can we confirm that? No, not really because he’s a year old and can’t talk, we would just have to second guess his signs & signals. To level up our challenge, we were advised that there were certain foods that were on the naughty list (to avoid) when he became neutropenic (Blog post: 08 Neutropenia) and these we’re not the typical foods we expected, but things like types of fresh fruit, vegetables, yogurts, hams, and cheeses.
NHS Dietary advice for people with severe neutropenia in protective isolation
The main piece of advice that resonated from our consultant was ‘The important thing, is calories in’.
Upon each hospital visit we would take in bags of food supplies & snacks just to ensure we had enough variety to last the duration of each treatment. I suppose the two downsides to this is the initial cost of overbuying food, and then waste of food which he doesn't finish or want. Lucky for him, he doesn't have picky parents and we dabble with the 5 second rule.
Fortunately Mason did not require additional feeling support, and he was able to maintain his weight throughout. Why are we telling you this? You may also be a parent looking after a child who is going through something similar. Maybe up to this point you have endeavoured to afford them a diet that Jamie Oliver could only dream of, but right now it’s not cutting it, and they're losing weight or energy? You may feel guilty for letting them dictate a diet and its seems like continuous convenience or snack food? Then please take some reassurance that Mason devoured as much of the following as we adopted a 'laissez-faire' approach::
Milk - literally couldn't get enough of the stuff, drank a lot more than usual!
Ellas kitchen pouch meals and smoothies - super convenient and easy for Mason to consume, drink/eat himself.
Chocolate - Cadbury's buttons & Fredo’s / kinder bars. Infact, anything that looked like chocolate or brownie he would reach out and demand a try.
Toast with plenty of butter, in fact that’s all he really ate off the top.
Crisps - He started on unsalted veggie sticks, then developed onto Wotsits & cheese curls, before advancing to the hard stuff......Kettle chips & Doritos.
Weetabix - soft and squidgy, easy to eat with a sore throat.
Nutella Crepes - one bite and it was a winner.
Vanilla ice-cream & yogurt - cold & easy to eat with sore throat
McDonalds fries - we gave him a few warm chippys and he ate them all, then continued to spot every 'Donalds' we walk past. He ate a lot of fries!
Strawberries (when he wasn’t neutropenic) because he just loves them.
Cucumber - healthy, cold, and easy finger food for him, for some weird reason he gravitated to just eating the middle bits.
Plain spaghetti - doubles up as a great toy evidently, not only did he enjoy eating, but also playing, throwing and putting it on his head. Spaghetti made meal times fun.
Donuts This turned into a post radiotherapy tradition that kept him sweet, combined with a pint of warm milk
Biscuits - the ones provided on the ward, he went through all of them - custard creams, bourbon and ginger nuts. Crunching away filling his cot with crumbs.