A word from mum...

I haven’t posted anything on this blog before and I vowed I never would however fickleness is one of my better attributes.

First I want to say a big thank you to everyone who has supported us over these last 4 months. I know we haven’t sent out as many thank you cards and the like as we perhaps should have done, it has not been for lack of time, just that putting down anything on paper recently, just the words “Scott” and “cancer” in the same sentence have been too much for me to bear. I hope you understand.

But your generosity and kindness have not gone unnoticed and we truly appreciate everyone who has brought a smile to Scotts face during this bloody awful time. And thank you also to Grandmama and Carolyn for remembering Derry through all of this.

I would also like to mention a little girl called Alex from Atlanta. We have never met her but she got to hearing about Scott and bought him a cute little froggy which gives Scott access to a cool site called Webkinz. I have tried writing to her a few times but each time I do I get all choked up and sadly Scotts handwriting has become so shaky, thanks to the chemo, that it is virtually illegible. So Alex, I hope you’re reading this and know how much your kind deed meant to Scott, and all his family. Thank you sunshine!

Also thank you to Stan, Yvonne and Barbara from Teco (Tampa Electric Company) who again didn’t know Scott but knew David. These very kind and generous folks did wonders. First there was the authentic AND SIGNED by the legend himself Mr Ruslan Fedotenko( Hubba hubba! Nyuck nyuck nyuck!) jersey which fits me perfectly, then they made a surprise visit to Scott when he was going through the dreaded methotrexate in hospital. They came loaded with goodies, toys, chocolates and games and Scotts much loved ‘peanut bunny’. There are pictures somewhere of this, I’ll have to track one down and have it posted here. Amazing folks wouldn’t you say?

Oh yeah and one more thank you, sorry, I know this is beginning to sound like the Oscars, but I can’t not say thanks to Noriel Castro (from Cuba!!!). We have got to know Noriel and his beautiful family very well during the last few months, his little 3 year old neice, JJ, has been ravaged by neuroblastoma, if there is such a thing as a bad cancer then neuroblastoma gets the award. Apart from arranging for a goalie stick signed by the whole 2006/7 Lightning team for Scott – look out for it on Ebay - he has just been a big bright light in all of this horror, always smiling and teasing Scott and threatening him with visits from cheer leaders. So thank you Noriel, you are one in a million.

Please continue to support Scott, you’d be amazed at how excited he gets when amongst all the bills there is something with his name on. And for those of you who ask “how can we help Scott” I think we now have an answer …. gift cards for pizza… Pizza Hut, Dominoes, Papa Johns, even Hess. He craves pizza beyond reason, nothing else will suffice. This is caused by very high pulses of steroids; these are given to promote cell growth and appetite. Most of the ‘cancer kids’ crave the same thing, and believe me when your child is critically ill you don’t want to say “No”, however we cant afford to keep doing this. And to those of you in the UK, 8 pounds converted to dollars will pay for his feast plus tip! The financial side of cancer gets you at every turn. So there you have it, a shameless cry for help.

Some have commented on the fact that this is hardly a healthy food to be feeding a child with cancer. Well that is true. However we have been told by doctors and nurses to give him as much high fat food as we can, to not worry about nutrition, just calories. We were even told that the blander the diet the better the child may respond to treatment and certainly no vitamin or mineral supplements as they will interfere with the therapy. One thing I try to do every day is to get Scott to eat a tablespoon of cream, more if I can, just for the high calories and fat. He also has a can of slim fast daily for the vitamins and protein. Fortunately he will eat fruit; though no veggies except tomato soup (does that count?). I try for at least 3 fruits a day; he also eats plenty of yoghurt and nuts so he isn’t doing too badly.

So far Scott hasn’t lost any weight which I am pleased about, in fact at certain times of his steroid pulse he is a bit of a porker! With his pot belly and big fat moon face he is positively lovely.

As for his mental problems, I mean health, he is coping incredibly well. There are certain days in his 3 week cycle when he is in a lot of pain from the vincristine and on these days he lays low, shuts down and hardly says a word to any of us, except regular demands for food. We have about 5 days of this and then the pain subsides and he is pretty much back to the Scott we all know and love. Boredom is a problem to be sure, we live in Florida yet he has to avoid the sun, he has friends but can’t go outside and play with them, he loves to play street hockey and skate but that is a big no-no. He has tickets for Pirates of the Caribbean 3 but there aint no way in hell we can let him sit in a crowded movie theatre until his anc improves. All very frustrating for him and thank goodness for the xbox. But like I said he is dealing with this well and we are very proud of him. Out of the four of us he is most definitely the one who laughs and goofs around the most, he never shuts up!! He still likes to mimic and recently added a Welsh gay man and an English chav to his repertoire. Hopefully we’ll see Poppa soon and he’ll be able to brush up on his Southern speak!

One last thing before I finally shut up, this is a link to one of the very few articles online relating to childhood t-cell ALL, interesting, scary yet still very hopeful reading.

read me

Thanks for listening!