Scott & Sunny

Scott & Sunny

Sunday, May 31, 2009

"but the tigers come at night"

Im still reeling about this. She should have damn well won.
She scrubbed up well though didnt she!!!!
I love her.

Scotts favourite....
maybe because he was 'riverdancing' when he was only knee high to a grasshopper, maybe because its just so darn funny.

just saw this on Sky
... not surprising really. I get a bit like that when we play Rock Band.
The Priory will have Susan right as rain soon I hope.

Saturday, May 30, 2009

Here's a few pictures of Scott in the pool this afternoon and also his new haircut which I cant get to look nearly as cool as the dude did last week.

He was feeling great until this evening but that seems to be the way of things lately. He's okay one minute then puking the next with panic attacks and just generally feeling like death warmed up. We have started detoxing him from ativan and codeine so maybe this is causing all his ups and downs. Also, he just got pulled off Bactrim so this could be the culprit too. I dunno. Its kind of worrying but I'm just hoping that when some of these drugs are out of his system he'll get his groove back.

Scott isn't too chuffed that we're taking his happy pills away but for a while earlier he could at least see the funny side of it. He launched into Amy Whitehouse's, "they're gonna send me to rehab, but I said, no, no, no." Spaz!

Sunday, May 24, 2009

"The web of our life is of a mingled yarn, good and ill together."

Its midnight and we're just home from a very worrying ER visit.
All started well this morning, Scott was feeling great and he had had lots of fun at the hair salon being pampered by this gothy, tatted, pierced, hairdresser dude with a heart of pure gold. He got his tres-cool mohawk and off we went to our friends house for a Memorial Day pool and rock band party.
Well we were only there an hour or so when I noticed bruises all over his legs. Lots of lots of small blue bruises. Panic set in, I called the wonderful Dr Rossbach and he said we should come directly to ER.
We stopped off at the house to get Scott changed and lo and behold, the bruises had vanished. Now bruises dont just vanish, so we're all like what the hell? They apeared then they disappeared. It wasnt petechiae, it wasnt dirt, its wasnt a rash, they were bruises, and then they werent, they just faded away.
The trip to St Joes was somber and reminiscent of the one we took 2 and a half years ago. And dammit I even said a little prayer (hey, even RD admits he could be wrong!!!) ER was packed full of sickly looking kids, mums and dads with tears in their eyes and homeless drunks. Thankfully Scott was bumped to the front of the queue and we didnt have to wait to be seen. The lab however took forever to process the blood.
Finally we were called back and put in a room. I asked for the results but they wouldnt give them to me so I chatted up the head honcho and he said, "sure you can see your sons results", and I'm all shaking and sweating and stuttering, my eyeliners dripping down my face, but whatdya know, his platelets werent 12 or 70 and 100, his platelets were normal at 207. Not great but certainly not low enough to cause spontaneous bruising. His hemoglobin was 13 (normal), his wbc was kind of low at 4.0 but he had decent monocytes (13.5) so that was a good sign too that nothing sinister was going on. There were no immatures or unclassifieds, all in all a reasonable cbc.
But that didnt explain the mysterious appearing and disappearing bruises and both the ER doctor and Dr Rossbach were mystified but did point out that they see bizarre and unexplainable things every day.
We were disahcrged with a diagnosis of 'we dont know'. Weird to be sure, but better than the alternative.
Alls well that ends well.

Thursday, May 21, 2009

Wednesday nights continue to instill in us all a dread of what the morrow will bring and our tradition of chilling out with good snacky treats, cuddles and mindless TV carries on. Last night was supposed to be that way but took a nasty turn when Scott had full-blown Ambiem side effects. Ambien is supposed to lull you to sleep and if not you could be in for trouble and that’s what happened. Scott couldn’t fall asleep instead he became hyperactive, then sick, then the hallucinations started. He was dizzy; he tried to bite the leg off a GI Joe (curious!) and then saw pens and pencils everywhere (even curiouser). I knew it was the Ambien and nothing more suspicious and knew it would pass, but until it did it was heartbreaking.
Today we had a better day. Scott ate well – lots of yoghurt and fruit – and even asked for Saltines and peanut butter!! Now this might not sound strange to most normal folks with normal kids without eating problems, but its strange – and good – for Scott. He has only had peanut butter once and he hated it, now all of a sudden he feels a need for it. As soon as he asked for it I remembered what the psychologist said to us way way back at the beginning of treatment. He told us that when the children finish treatment many of them eat differently, their taste buds change and they eat things they have never eaten before. Well I sure hope he’s right, it’d be good to see Scott become a little more adventurous – and health conscious - with his diet.
We also managed to dodge the rain clouds (its Ark weather down here in Florida) and get out for a nice walk this afternoon. Scott still walks funny and the pain is worse than ever but he managed it. His bruises are still very present; the least said about that the better.
Scott’s fat is dropping off and boy am I jealous. Every day he looks leaner with definition returning. He’s now wearing clothes he hasn’t been able to squeeze into for over a year. The chins are ever present but receding. Yay!! Oh and on Sunday he’s booked – with a master designer no less – to have a mohawk with highlights!
More importantly than anything else his sense of humour is returning. It’s been AWOL for a while now but a few days ago Vickki Pollard made an appearance again along with his “I am the only gay in the village’ recital. *This will only make sense to the UK folks I think.* This evening he announced how he wanted to become a spy for Richard Dawkins and infiltrate Jesus Camp 09. Not sure wether RD wants a Jesus Camp spy but never mind, good to know Scotty’s mind is on things other than leukemia … even if it is spying on Jesus Camp.

Tuesday, May 19, 2009

Uggg this off-treatment lark is a bitch to be sure.
Scott finally stopped spouting bodily fluids about 10 days ago. David and I breathed a big sigh of relief and Scott unclenched.
Last Thursday he had his first official O/T check up with, spookily enough, the doctor who originally diagnosed him. As he had been in the previous week and his blood looked good the doc didn’t order more tests, he just physically checked Scott over and sent him on his way.
So all seemed well and groovy until Scott started throwing up again on Saturday morning. He’s also riddled with bruises which are THE red flag to a leukemia patient (indicating platelets being crowded out by cancerous cells) BUT he had been wrestling with his brother on one of his better days. Each bruise has now been counted and catalogued – any more show up and hey ho hey ho its off to clinic we go. Sunday and Monday he was also sick, tired and miserable but today no puke and a wee bitty more of an appetite.
I thought the end of treatment would be a cakewalk, its not, its hell.

Finally, in case you didn’t see this today, here is Ida
isn’t she a beaut!!

More beautifulness, Springsteen and aqualungmyfriend ...

Thursday, May 7, 2009

Scott was still very sickly yesterday and much to my dismay the clinic wouldnt refill his nausea medicines without seeing him first. I was hoping to keep plying him with some good drugs and bury my head in the sand but they werent having it.
So we went in to the "off-treatment" clinic, which I didnt like very much, nothing like the same old familiar cancer clinic I spose, and he got checked over by Dr Tebbi - which Scott calls his 'feel-up'. The doctor couldnt see anything obviously worrying, nothing distended, no signs of dehydration, nothing like that. Blood was drawn and we were sent home with lots of lovely little sample pots and instructions to keep Scott on a ginger-ale diet for a day.
The blood results came back this morning and thankfully everything looked okay. His hemoglobin and platelets are good and his anc is 5000. He is still oozing bodily fluids left, right and centre though, so goodness knows what is going on. A simple bug perhaps, but with Scott I have my doubts. He doesnt have simple bugs.
David is also quite ill with symptoms similar to Scott but I dont think its the same problem.
Doctor Tebbi is also going to send Scott to another specialist in the coming weeks (once he is feeling a wee bit better) regarding his chronic diarrhea, he suspects it could be IBS brought on by the chemotherapy. Shit! ( <- please pardon my pun.)

Tuesday, May 5, 2009

Scott's not well. He's been throwing up these last few days and his temperature is rising. Our worry meters are through the roof. Have avoided the hospital so far but unless he perks up very soon then I think we'll be going in.

Friday, May 1, 2009

As mindblowing and as wonderful as it is to finally reach the end of POG9404, life in our little patch of the universe continues much the same. I still think of Scott as having cancer and he still behaves as if he is still a sick little kid. It’s all a bit strange really, it becomes your life for so long and then all of a sudden you’re told to bugger off, stop taking the pills, and not come back for a month. I think we all feel a bit lost and orphaned.
This is a sorry excuse for an update, but I can’t find the words lately. I have lots to say and nothing to say.