Stop the ride I want to get off...

Wednesday, November 02, 2005

more of Amy's story...

so here's where we had got to so far...

So there I was with this drunken mood swinging child… and what was she like in the morning, you do NOT want to be in close confines ever with a six year old with a hangover. Actually make that a six year old with PMS and a hangover. Thankfully the hospital teachers and the nurses decided for my sanity I should go out for two hours that day. I think they were worried the cancer might be the least of their worries.

That was on the 5th of June, if you want to go read it.

We got sent home that afternoon, after they were sure she wasn't going to keel over with heart failure, or some other major "side" effect. I beleive death can be listed as a side effect... strikes me as a little more than a side one.

So we go home, info on how to cope, piles of antisick tablets to give and a warning. If her temp goes over 38C call us and then come straight in. We look wide eyed and they explain again about the risk of infection. When you watch people on TV or in films have chemo, you often see them throwing up. They look ill and manky within minutes. These days it's rarely like that, most of the time Amy was on chemo she looked very well. Oh she was tired and not quite herself but for the first few weeks she was still our Amy. But what you don't see or hear much about is this. Cancer doesn't kill the majority of cancer patients, the treatment does. It destroys fast growing cells.

Let's see, that's the hair growing in the follicles, the lining of your mouth and stomach and nasal passages. All the lining of your intestine from one end to the other. Most important of all, the marrow in your bone. The drugs Amy was on only suppressed her bone marrow, but this would still affect her ability to make blood. Your body is always making stem cells to release that will turn into whatever blood cells you need. We have three main kinds, red that carry oxygen, platelets that stop you bleeding, both of these can be topped up with donations from blood donors. Thankfully in the UK there is a good free blood supply.

Then there are the white blood cells, the ones that provide all the defences against infections. It's scary how these can plummet. I just found an email I sent out at this time, it covers a few weeks, I thought of editing it but decided I like the feel of it. It gives a real sense of how I felt those days.

So we went home knowing that if we spiked a temp...(gotta learn the lingo) that is Amy's temp went above 38 degrees we had to head into the hospital. The first week went okay, we went to clinic on the Thursday she had her single chemo and we thought this is going to be simple enough.... HA HA HA HA HA HA!!!! Hey we were new to this
what did we know... now we too watch the newbies looking relieved when they get to go home and wave them off... adding their names to our list of new friends.. as we know we will be seeing them soon.

So on the Saturday Amy wanted to go to a Roller Disco party, she wasn't allowed to skate but had a lovely time. Mum also discovered that old skills never die... and impressed Amy and friends with her rollerskating prowess.... mucho street cred points for Amy as her Mum could skate fast, skate backwards and do the teapot. Mum couldn't walk very well the next day mind.

That evening we spiked and stupidly headed straight in together. We had been planning a night out with a babysitter booked. Still A&E could be romantic I guess... if they got some candles and we got the Balti house to deliver. This was at 6pm they finally got us settled into a bed at 12.30pm. Considering this kid had fallen asleep on the sofa at 6pm feeling poorly it seemed a bit daft to keep her awake till after midnight. Finally went home Sunday Afternoon on condition we attended Day Clinic on Monday. Poor George Half Term instead of being a week away at Centerparcs had turned into a pass the parcel round friends. We were at clinic all day Mon and Tue, Thur most of the day aiming to return on Mon. As it was Amy looked dreadful on the Friday and went in at night with Dad... was sent home..... Sat went in with Dad....... sent home after blood cultures taken... Sunday Hospital calls us and in we go. Stayed for eight nights. Both lines attached to drips, chemo and blood given on Friday.... I would have given the blood when we arrived personally but then I'm only a parent! We did however discover that you can be let off lines for trips out to town in a wheelchair... whoopee... Daddy's credit card took a beating. And Mummy learnt that sometimes Mummy's are right... Also if Amy won't take medicine
find the nice nurse Sean and get him to offer to give it via bottom... Funnily enough her mouth opens instantly. She even believes we can give fluids that way!

That week was a nightmare as Amy turned into something out of the Exorcist apparently this is normal Post Chemo Syndrome.. just imagine a 6 year old with major PMS.... and times that by ten. We left hospital on the Monday a rough stay as Amy was not very well for most of it. We were back for the most of the day on Thursday clinic GOOD NEWS... op date 19th March three weeks earlier than first planned... More GOOD NEWS... Dr had to hunt to feel tumour it has shrunk faster than expected.... MORE GOOD NEWS ...... no sign of tumour in George!!! . Then CT scan on Friday.... Amy had to drink a litre in an hour... cost me a Diva Doll £30.... but worth it.....

A weekend at home!!!!! YAYYYYYYYY We had Indian takeaway with the kids... Amy likes Chicken Tikka! Food is a pain... she needs to eat all the time to keep the weight up... but doesn't like the taste of most things....

Back in on Monday with Dad at lunchtime for a flying visit... line needed a flush incompetent nurse at CT scan.... Back on Thursday, meet Surgeon he's lovely makes Amy laugh, Consultant is positively skipping about room over CT scan... still bits on lungs but those spies will be dealt with either by chemo or we'll zap em with the radiotherapy at the end. So now I've spent another weekend at home with my girl, taken my boy out to see a film and spent hours packing. We've even put up the new cupboards in our bathroom and I sorted out a wardrobe.... life almost seemed normal this weekend.

I'll let you all digest that episode... and try to think of a nekkid pic for tomorrow.. hmmm



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