Samuel's half term started last week Monday hence no update....apologies they've kept us really busy! On a brighter note, following Paige's ability to hold on to her neutrophils, her oral chemotherapy dosage was finally upped to 100% last week Monday.
With regard to her feeding tube, it was agreed by all (us and consultant Jo Walker) that we would monitor her very closely and if her weight dipped below or neared 10.6kgs we would have to consider reinserting the tube. Surprisingly I have very mixed feelings about all of this. Her feeding tube provides that much needed backup for when madame just isn't in the mood for eating. It was always very comforting at night knowing that she was able to get that extra 450 calories. It meant a bit of discomfort for her and an interrupted night's sleep for us, but it always seemed worth it in the end.
We had a pretty uneventful but fluid two weeks as plans changed on a daily basis. Tuesday we were planning to take the kids to Paulton's Park but both Paige and Samuel woke up with the sniffles. Of course with Samuel being at home Paige did not have any naps during the day and decided that she would spend the entire day on Saturday sleeping. She woke up or rather opened her eyes at 8.30am, downed tons of apple juice then went back to bed and woke up at 10.30am. Unfortunately she missed "The Elves and the Shoemaker - Boofy" a premiere at the Point Theater that was sponsored by the Rainbow Trust for their families. She was asleep again by 1.30pm and woke up at 5.30pm. Again missing an outdoor Halloween party.....I didn't mind too much cause it was bitterly cold on Saturday.
Finally things picked up on Sunday and Russell enjoyed a day of sailing (his early birthday present) and then we all went to Julie's house dressed in costumes for hotdogs and then onwards to the fireworks display. Paige absolutely loved both the social event and the fireworks. It's so reassuring to see her just mingling and running around with kids her age who are healthy :-) When we were outdoors looking at the fireworks I stupidly asked "Paige are you warm enough?" her response "I'm trying to watch the fireworks mummy...."
Today we spent a really lovely afternoon trekking through the woods from Bere Forest to 100 acre woods with mums and kids from my first time mum's group. We've now known each other for four years and the boys do get along quite well with each other, a welcome benefit !
Paige's neutrophils are still holding at 1.4 after a week of full dose of her Chemo, and she is scheduled for her Vincristine and Dexamethazone next week Monday. These 4 weeks sure do roll around quite quickly!
See you next week - look at the gorgeous hair !!!!