26 March 2012

Long Term Maintenance Begins!

At last, the road to recovery for Paige is becoming a bit clearer. Although she's been at the hospital again since last Friday, she's looking really well, it's the best that she's been since she's started Delayed Intensification.
Blog's have been limited for a couple of reasons namely that both Sam and I have been sick and Russell has been with Paige 24/7. I've now had a cold for the last week that isn't showing many signs of improving despite the anti-biotics and 'rest'. Poor Sam he's also been sick. He went to a birthday party on Saturday and was sick at the party and all over Jamie's car. The kind father of one's of Sam's school mates (and husband to my friend Juile) who took Sam to the party because I was coughing and spluttering all over the place.

By Sunday he made a remarkable recovery so we celebrated with a water gun, look at the smile on his face

Paige on the other hand was equally as cheerful despite her temperature and she got a slide. It took her less than 5 minutes to get over her fear of the slide. She slid down on her tummy twice then braved it on her bum. Another bit of evidence of the tough matter that she seems to be made of. Of course she's never been on a slide before because there are far too many germs on the playground and I figured that I would look really silly trying to wipe down the slide with an anti bacterial wipe! So here we are with a slide in the middle of the lounge :-)

She also had a stroll in the garden in her wellies, that she put on all by herself by the way. She's trying to water the plants with Sam's fire extinguisher.

So what does long term maintenance mean? For one Paige's hair may finally get a chance to grow back, she absolutely hates being bald and doesn't like taking any pics. It also means that she will no longer have any intensive blocks of chemotherapy........YAY.

Her schedule for the next 15 months or so will be:

1. Vincristine (chemo that may give her jaw and tendon pain) and dexamethazone (the steroid that makes her completely miserable and the primary cause of her tummy problems - me thinks) for 5 days - once every 4 weeks
2. Lumbar puncture - once every 12 weeks
3. Oral chemotherapy everyday, if her neutrophils are above 0.5 at a minimum

So we all desperately need to get better soon, as tonight's blog was again delayed because Sam was sick all over my brand new sheets that I have been saving till Paige's tummy was better - they're just sheets right? but they were a small symbol to celebrate the start of maintenance and that her tummy was well.

Hopefully Paige will be discharged by tomorrow and Russell can finally return to work, he's been home for the last two weeks, doing a fantastic job of looking after his family and especially his daughter. It breaks my heart in the evenings, after Paige has had a bath, changes into the pjs of her choice, and she simply picks up her taggy, puts on her coat and heads for the car with her daddy to spend the night at the hospital. I can't imagine what she must think, but it obviously doesn't seem strange to her at all. Hopefully Sam's tummy ailment isn't contagious or the start of something worse.

So anyone knows where we can get a 'bush bath' in England??

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