Diet and Behaviour
When Jack was first diagnosed, more than one member of staff forewarned us of what to expect in terms of the changes ahead in Jack's dietary demands and behaviour. However, there is one phrase that was used to describe what would happen that applied the best and has not been forgotten, and it went like this :
"We will take your child away from you for 3 years, give you a monster in his place, then at the end of the 3 years, give your child back to you"!!!!!
That is exactly what has happened, and we are looking forward to getting "our Jack" back in a couple more weeks when the effects of the drugs have cleared his system.
We took into hospital a gentle and happy little boy who ate very little yet enough to keep him growing. He has never been a great lover of fruit and vegetables and we struggled to find ways of getting enough into him, and from time to time I would give him a course of Minadex to help.
Within days of starting treatment and the five-week course of steroids he was on, he "requested" ham, sausages and mashed potato very regularly. His demands for sausage and mash came so frequently we soon learnt to make a huge amount and store it in the fridge to heat up later as each plateful kept him going about an hour or two only. Yes, we did find ourselves in the kitchen at 4am - as we had been warned, and which we laughed about - cooking sausages and mashed potato. Sleep deprivation became the norm as it does with a newborn baby, and we would take it in turns to go to Jack when he called. By the end of the 5 weeks of steroids, Jack had gone from a stick thin featherweight 15.5kg boy to a whoppingly huge steroid-round faced 19.8kg boy that I could no longer lift out of the bath, and due to his spinal fractures he couldn't get himself out, therefore, baths were only allowed when dad was home.!!!!!
As the steroids were reduced to stop, his demands still came, but by the time the food was prepared he had fallen asleep, and this became quite frustrating at times, until we learned to say "I'm doing it", and to wait 15-20 minutes then check, and usually he was asleep again, and we could wait until the next call.
Jack's weight gain reduced back to 16kg almost a quickly as he had gained it, once the steroids stopped. However, for the rest of his treatment, the 5 days on steroids would mean stocking up on copious amounts of ham and sausages. It would be nothing for Jack to get through a pound of ham in about 2 days!!!!! However, once the steroids had stopped, his intake until the next course would be very little, and we became so concerned at one point we kept a record of everything he ate for a week. When his dietician checked this, it seemed he was taking in enough over that period of time to sustain normal growth and we were told not to be concerned and just give him whatever he wanted.
One of Jack's strangest food combinations was cheesy wotsits dipped in wildlife fromage frais. He was almost obsessive about certain food makes as well, purely on the way they tasted he would say. We had been told that chemo can alter the child's taste and give a metallic taste and he certainly became very choosy.
Jack's regular diet would contain the following:
Cornflakes or shreddies with milk, bread and butter, bread and cream (philadelphia cheese!), toast, milk to drink, ham, sausages, babybel, fromage frais, bananas/orange juice sometimes, pasta with butter, basmati rice, potato waffles, grilled/battered sausages, chips, kit kats, crisps/quavers/wotsits, Haribo starmix,coke, McDonalds chicken nugget happy meals and in recent months Chocolate, chocolate and more chocolate.!!
We sit together as a family most evenings for a meal and it is very difficult to try and get 3 children to happily eat their chops with vegetables etc when Jack is tucking into battered sausage and chips, but we would try to explain to the girls why this was so, how once treatment finishes Jack would be expected to eat the same as them, and we would also give them the same meal as Jack from time to time as a "treat".
How Jack's treatment affected his diet and his behaviour had one of the biggest impacts on the whole family throughout his treatment and nothing/no-one can fully prepare you for what will happen, or how best to deal with it as there is no right or wrong way.!!
We were warned that steroids can make your child "grumpy", hence their nickname of "Grumpy Pills", but Jack's behaviour was different when he wasn't on steroids and we couldn't work out why. We had had children's tantrums before and usually ignored them until they run their course, but the tantrums Jack started to have were ten times worse than any we had ever seen before. They came from nowhere, were very difficult to prevent/ignore, were very loud and violent and lasted quite a long time. The best way we found of dealing with them was to try if possible to remove him from harm, remove any loose items that may be used as missiles!! and ignore him until it finished. This was possible when at home, but more difficult when out. I remember a tantrum starting once in his favourite Padlock shop when I followed through with a previously agreed refusal to buy another padlock, when Jack started. It began with screaming and refusing to sit in his pushchair, I had the pushchair tipped up to keep his feet off the floor to get out of the shop, when I reached the car and had the door open and Jack rigid in my arms trying to squeeze him into the back seat, he was grabbing the door frame and screaming at the top of his voice, "Help me, someone, Help me"!!!!. I eventually got him in but it took 3 or 4 attempts to keep his car seat buckled, as every time I moved off he would undo it. It was a very stop-start journey home, and by the time we got there he was very subdued - I think the tantrums upset and frightened Jack as much as everyone else. My remaining concern over this incident is that No-one came to his aide even though I am sure a number of people heard his cries.!!!!
Whilst all 3 girls have regularly been on the receiving end of Jack's aggression, probably the one to receive most is Gemma. Sophie would just shout back, Katie would give as good as she got, but Gemma would stay rigid on the spot taking whatever he gave her. She therefore suffered most black eyes, bruises and bite marks. In recent months though, she has been giving back some of what she receives.
We became aware during Jack's second Christmas on treatment that it was his daily drugs that were causing his behaviour, not the steroids - they just increased it for a week - as Jack was so neutropenic we had to stop treatment for a couple of weeks and he changed and became really placid. Then, within 2-3 doses of daily chemo, whilst sat quietly on his bed one evening Gemma suddenly received a cup in her eye for no reason and Jack started shouting at us. It was then we realised we were going to have this until treatment stopped.
Jack developed three sides to his personality depending on where he was.
“Hospital Jack” – was a very grown up and mature little boy older than his years, he was very knowing, very well behaved and did whatever was asked of him.
“School Jack” – a more unsure of himself Jack. With so many breaks from school, it was difficult for him to develop proper “friend” groups and each time he returned to school after missing some time, he was very unsure of himself and needed lots of reassurance. It was also difficult from a teaching point of view, as the rest of the class had moved from when he was last there. The teachers would have to check what Jack had been doing and go back to it with him. At school, Jack learnt to control his mood swings and behaviour as he must have realised it was not acceptable.
“Home Jack” – here Jack probably felt he could relax and just be how he felt. None of us knows how this must have been, but there are regularly naps, tears, physical aggression and very loud verbal aggression. Trying to let Jack know we understand it is not him but the effect of his drugs that make him behave in this way has been a constant in our lives – and the girls lives – and he seems to have understood this, even if he couldn’t control himself at the time.
Jack's school and social life have also been affected by his treatment.
Jack started school 7 months after starting treatment and his attendance was very hit and miss, as he was so tired from treatment he spent a lot of time lying on the sofa watching cbeebies or sleeping. I would take him to school whenever he felt up to it but it was very difficult during his reception year. When he entered year 1 we started having a hospital supplied home tutor for a few hours a week to try and keep him up to date. This went on for a few terms, then Jack was handling treatment a bit better and was a bit less tired and attending school too many hours to qualify for home tutor so this was stopped and we have continued to try and get him to school whenever he is up to it.
We have noticed a number of changes in the way Jack has been coping with treatment in the last 10 months. He started becoming aware of a link between Vincristine treatment and feeling rough the week after, and would become quite quiet on the journey to hospital for that treatment, almost as though he dreaded it. At the same time, he seemed to cope with the weeks in between much better and seemed much stronger.
Since September 2006, Jack has attended school more than ever, and mostly only misses his Vincristine week, as he is so rough during this week. He spends most of it lying down watching TV - and eating ham and chocolate !!!!!!!
Jack is also much stronger now and falls asleep much less, if ever, during the day, and spends much more time outside playing and riding his bike, and has even gone on a 4 mile ride with his dad twice. We are looking forward to him being able to do this and more very soon. We also hope come September, he will be in school everyday with only days off for check up appointments and minimal sickness.
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