Thursday's roll around too quick. Back again tomorrow, hopefully Scotts counts will be over 750 and we can go ahead with IV methotrexate. After the worry over Christmas I dont think I can handle seeing low counts again. Also hoping to see a lowered bili count. His eyes look a lot better, that yellow zombie look has gone and he's been knocking back plenty of vitamin C so I would imagine the bili is coming down. Last week his other liver enzymes were elevated too, dont know why and neither did the doctor, it would be nice to see them within the normal range tomorrow.
Scott will also have his first dose of the breathing treatment, Pentadamine. This is done to prevent a type of pneumonia which can be fatal. He has to spend between 15 and 30 minutes breathing in a chemical which will protect his lungs. According to some other children we know who have Pentadamine it tastes foul and Scott is very nervous. Me too. He has such a sensitive gag reflex and Im anticipating puke.
On the whole he has been feeling pretty good, lots of energy and eating well (for Scott and pigeons anyway). Last night he was a bit down and had a headache. Headaches set off sirens for parents of children with leukemia but I did good and didnt have a complete meltdown. He wanted to sleep with me so poor David got booted out - again!!! We snuggled up and I told him the story of Waltzing Matilda, a wonderful folk tale and a song I just cant get out of my head. He felt like shit, his head hurt, he was tired, but in typical Scott fashion he said how sad he felt for the poor old swagman. So much for me making him feel better. Damn I need to learn some pretty stories with happier endings.
Watch this, it will send a shiver down your spine ... its lovely...
Scott & Sunny
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Hope Scotts headache has gone this morning and you get some good news about his counts at the clinic.
My real hope is that he doesn't gag on that Pentadamamine (or whatever it was called). It sounds horrible having to sit there so long breathing in foul tasting stuff. That's bad enough without being sick as well. None of this is getting any easier is it?
Keep bing strong Scott - we're all thinking of you.
With love,
Dawn.
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