He would spend the first 4 weeks of treatment on a high dose of steroids and then 2 more where the dose would be gradually decreased as part of the start treatment or the intensive treatment. He would then need to take them in other intensive treatments and as part of the maintenance treatment cycle for 5 days every 28 days.
Billy started the steroids whilst we were still inpatients at Piam Brown and the first few days seemed to have very little effect on him, whether this was down to the fact he had just had an operation to insert his port and he had just started gruelling chemotherapy. I must admit a bit of me though well this isn't going to be too bad, all this fuss and look he's fine, no side effects or anything. But within a couple of days this started to change.
The first thing I really noticed was Billy's appetite increasing, and it wasn't by a small amount. He was suddenly starving all the time, and wanting things that he never really ate before. Luckily on Piam Brown it was quite easy to satisfy the appetite as they are quite used to it. Still it was costing me as I was having to run to the shop downstairs for little top up things. He seemed to want salty foods to start off with, he went right off of chocolate and sweet things, he loved twiglets and french fry crisps. He also wanted apples.
Then the mood swings started. I mean mood swings too. One minute he was quite happy the next either full of tears or really really angry. This would just come on with no warning whatsoever and could be over the most silly things. It ws such a shock as Billy had always been the most easy going and placid child around. I had watched him play with others and also been told many times by nursery or school about how he never reacted badly to things and then suddenly this.
With the mood swings came the lack of sleep and the constant waking in the night, first of all I put this down to being in the hospital with all the strange noises and the obs checks. By the time we were transferred back to our local hospital it was very obvious this was getting worse.
There was also the weight gain. Billy had always been a little skinny boy and then the steroids started to do their stuff. I felt so sorry for Billy by the end of the first few weeks as he was blown up like balloon and he struggled to walk or sit down or really do anything. He was obviously in pain too but he was so so good and didn't complain.
The steroids either came in tablet or liquid form, I preferred the liquid as it was easier to get into Billy. To start off I mixed it with the laxative as it made it taste better for him. Now he can take tablets either form is fine for us.
By the time we were discharged from hospital to go home Billy's appetite was crazy. The food cravings tended to change almost daily. Sometimes it was ham and cucumber, other days it was fresh spaghetti and sausages and some days it was chips and apples. I found it very hard to do a big shop as Billy would suddenly go off something and I would be left with a big supply of a food I didn't eat! friends did well with the leftovers!!
The amount of money that it was costing me was unbelievable, thank god for Clic Sargent who gave us a grant to help us. It was another way that our lives were changing and it was a hard thing to have to deal with.
I found the whole steroids periods draining. It was like having a tiny baby again, waking constantly during the night and demanding food. At the end Billy would wake up at 5, unable to sleep anymore, after going to sleep at 12. I would get up make him 4 slices of toast and marmite, leave him some milk and yogurt and try and go back to bed to sleep. By 7 ish he was starving again! That was how our lives went on. Tired wasn't the word for it, I honestly felt that I needed match sticks to stay awake, but I had to make do with red bull and diet coke!
The weight gain was hard for both of us. As it all seemed to be going on the top half his legs struggled to support him so I was carrying him around indoors or using his buggy when we were out and about. Even at school he struggled to get around anywhere. He looked so so uncomfortable and I had to buy age 7 clothes just to fit him!!
When we had to go to Southampton for lumber punctures they tried to get him first on the list so he didn't have to be starved too long but the last week of the high dose was hell. He had no comprehension or reasoning due to the drugs and it was heartbreaking as he cried non stop until they put him under. When he woke up he demolished a mountain of food.
The behaviour changes were awful. I can't count the amount of times that he had a major meltdown in a shop or while we were out and about. People looked at me like I was the worst mother in the world and only a few was I able to explain the reasons for it to. I remember being in out local supermarket where the staff knew us and a woman tutting and complaining about my 'naughty' child and one of the cashiers telling her exactly what was wrong, did she look embarrassed!!
I cried so much during this time as the changes to my lovely Billy were so so hard to cope with and I despaired of ever being able to go back to normal again. I was assured that he would go back once the steroids were finished but I couldn't see it. He put on over 6 kilos in 3 weeks and looked nothing like himself. But I had to put up with it and get through it. After all if he didn't he could die....
This was how Billy looked after the weight went on...
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