The high of the last two weeks came crashing down when Paige's blood results for this week showed that her neutrophils were at rock bottom of 0.1. Two weeks ago we were so proud of her ability to get to neutrophils of 4.5 on her own after two continuous weeks of her full dosage of oral chemotherapy.
Usually when her neutrophils have crashed there is a distinct change in her behavior and she is unable to make it through the day without a nap. Paige however clearly has unrelenting willpower and she has made it through several days without a midday nap, just so that she can join in the activities with Samuel.On Saturday she even went scooting and to a birthday party with Samuel at the Marwell's activity center, she had a great time walking across a fallen log and looking at all the kids at the indoor play center. She is ever so clever though, she was allowed to use some of the rocking toys next to the soft play area, and before she went on she came running over..."mummy where are my gloves?' I am so pleased that she was protected!
So the start of the week was a like a swift kick in the gut and now her hair has started to fall out again :-( she has long beautiful hair and it's everywhere. Hopefully it'll just get thin and not all fall off. Apparently only some kids loose their hair during maintenance and Paige is one of those. For those that remember this is her third lot of hair and last time she lost more than 50% of her eyebrows and eyelashes as well :-(
her lovely hair
On the bright side we are busy planning birthday parties for both Paige and Samuel. Even though Paige is a bit young she has asked for a party and Sally of Jiggy Wrigglers has asked to provide a complimentary hall, entertainment and Peppa Pig for Paige party - thank you Sally you certainly have a big heart!
I also held my first fund raiser for CLIC Sergant yesterday, and while 50% of the people didn't make it, the ones that did had a great time and I still managed to raise some money. I also did a radio interview for WAVE 105, to be used during a fundraiser drive that they are doing for CLIC Sargent. It should be aired this weekend.
So the roller coaster that is our life continues, helped along the way with beautiful smiles and lots of chatter from the beautiful Ms Paige
Bloods will be done again next week Monday......