I want to tell you about the day I realised for the first time how easy it is to judge another person, but before I get to this I need to share a bit of background information:
One of the drugs we hated the most was a steroid called Dexamethasone*. I would say this was probably one of the most hated and dreaded drugs Bianca ever received in her 830 days of leukemia treatment. The very first time she went on it was for a period of 28 days and from the very first dose the side-effects popped up. Bianca had this drug regularly during her treatment and each time we dreaded it. We were warned of the different side effects* (and I'll list them at the bottom just for your information), but were incredibly unprepared. The first week Bianca was in hospital we had to write down every single thing she ate or drink. To my horror, the only thing she wanted to eat was salt and vinegar pringles. The whole day. And I felt so incredibly guilty having to list how many pringles she was eating. What would the nurses think? She was simply not interested in anything else. Later on I learned from the doctors that while nutrition was important, the calories or kilojules were very important and they suggested to add cream to her breakfast cereal or use butter instead of margarine. And the one thing I dreaded and wanted to avoid at all cost was the NG tube (or nose tube).
Apart from the constant hunger and food cravings it made Bianca look like this fat kid with this big swollen tummy and chubby cheeks. And every round she craved something different. The first time she started the drug it was salt and vinegar pringles, not long after was chicken nuggets, then it was chicken flavoured rice crackers and later on vegemite sandwiches. You'll notice - no sweet things. And one thing we learned was that you should not let your child on steroids watch shows with food. We made the mistake of letting her watch Asterix one evening and suddenly she turned to us and said "I'm hungry for wild boar". Yes, she craved wild boar. Like you see on Asterix. Where the characters eat these big chunks of wild boar. And of course nothing we could possibly offer would even remotely taste as she was imagining it to taste (and most definitely would not look as she saw on Asterix). She was begging her dad at 9pm to go out to the shops to find her some wild boar, and for 2 days she kept begging us to find her some wild boar.
Another thing that completely caught us was how Bianca was constantly hungry during the times she was on steroids. Like in she'll eat a big plate of food now and then literally 10 minutes later would be crying because she felt so incredibly hungry. The first night at home after she was discharged from hospital we got woken up at 3am with Bianca standing next to our bed begging us to please make her some food and I remember asking our nurse at the time if this was going to be like this for 2 years because it was suddenly like having another baby. We learned very quickly to make her a snack pack which we would put next to her bed after she fell asleep (not before or she would eat it all up straight away) and for a while our one au pair thought there was a mouse in the roof above her room and finally realised that it was actually Bianca waking up at some point in the night to eat some rice crackers or something in her snack pack.
I'll say this though, ProNutro became a lifesaver. And even if Bianca ate this breakfast cereal for dinner, we still felt at least she had something that was fairly nutritious. It has a good range of vitamins and minerals, protein, iron and so on. And thankfully this was available from our international shelves at some of our stores.
At the time I vowed my children were never ever going to eat McDonalds. And guess what? One of the things Bianca craved was McDonalds chicken nuggets and there is simply no way you could argue with a kid on steroids. Because ultimately you are not dealing with your child at that time, you are dealing with side effects. So my mind got changed really quickly. And when that is all your child will eat, then you end up giving in. There were many days that she had very little appetite and so the days where she ate whatever she craved were actually a bit of a blessing.
I'll never forget the day we needed to tell Bianca that she was going to get a nose tube. She was simply not gaining sufficient weight, struggled with a serious viral infection (where she was in isolation and on oxygen for around 34 days) and I remember her suddenly begging me not to let her have a nose tube and "I will eat Mummy, I promise". It was one of the worst days that day, hearing her cry and beg and plead and watching her struggle and finally she just seemed so defeated and on that day I felt like I betrayed her. I knew we had no choice, there was nothing I could do, but knowing that she had to endure the thing she feared the most was simply horrible. Of course once it was in, it was actually a relief because it took away the pressure of trying to get her to eat. So you quickly learn that at the end of the day, as long as they eat, you can deal with it whatever they might be craving.
But back to the original point of this story:
Right in the beginning (after Bianca started steroids) she didn't look much like a sick kid. She still had hair (okay short hair) and other than that she just looked like a fat kid with chubby cheeks and a fat / round tummy.
And at that stage she craved chicken nuggets big time. Like in by 9am she would be begging me to please take her so we could buy some chicken nuggets. And by 10am I would give in because by then she would be asking every 5 minutes. And I remember sitting there with her in the food court, watching her stuff chicken nuggets into her mouth and before the last mouthful she would already be asking for more and I remember thinking I wonder what the people around us must be thinking. She doesn't look sick. She doesn't look like a cancer kid. She just looks like an overweight kid pigging out on junk food. I wondered how many people looked at us and thought "what a horrible mother for letting her overweight kid eat all that junk food". And I realised how easy it is to judge another. That we don't always know the real situation or the background story or the real facts. That day my eyes really opened to how easy it is to jump to conclusions without knowing the real story. And that when we do that, it really isn't fair to the person being judged. Ah, the life lessons we learned...
*Side effects of Dexamethasone
- Difficulty sleeping / falling asleep
- Decreased ability of the body to fight infection
- Personality changes with mood swings
- Changes in hormone production that cause weight gain especially around the abdomen and shoulders, puffy cheeks, muscle weakness and make your body less able to deal with stress