Monday, December 31, 2007
I guess that'll be the dour Scotsman in him. LOL.
Happy Hogmanay to you all and lang may yer lum reek (wi ither fowks coal!). I'll sign off my last post of this dreadful year with a couple of beautiful treasures...
Thursday, December 27, 2007
However, his biliruben level was very high today, much higher than it has ever been, and this is a concern. It had been thought that the high level was due to chemo and the liver struggling to process such a large amount of dead cells. This does now not seem to be the case as we have had five full weeks of no chemo and yet an increase in biliruben. Quite a lot of blood was drawn and a hepatic viral panel will be done to see if this can give us any idea as to what is going on with Scott's liver. We won't get the results for a week or two.
So again we only recieved a half dose of vincristine. Whilst part of me is celebrating the fact that at least we are getting chemo again another part of me is very worried indeed. Something is screwy with the liver enzymes and some of the virus's they are checking for are very nasty indeed. If a virus is not diagnosed then Scott will be refererred to a specialist.
Until this is resolved we will be on half chemo. Not good. Also, for as long as we have this biliruben issue, we will likely see more delays and concerns with his treatment and bone marrow recovery. Whilst his body is trying to fight this virus, if that is what it is, his counts will be effected and take longer to recover.
We will all sleep better tonight for sure, but still there is unease. T-cell is a such an aggressive leukemia, and to kill it requires consistent high doses, not pansying about like we are now.
Kind of a sick line of thought when you're happy that your child can get poisoned shoved in him, but that's the way things roll.
We'll post more later, but this is a HUGE relief to us all.
Monday, December 24, 2007
Scott has been singing this all day long, he says it is his favourite Christmas song ever (amazing what a little brain-washing can accomplish eh!!) but I think he just likes to get away with a few naughty words and call it "being Christmassy". For me, this has got to be one of the best love songs ever written, it also brings back memories of spinning around my little house in Scotland with a baby under each arm, singing my heart out, not a care in the world.
Screw you cancer.
Thursday, December 20, 2007
We got a rise in counts (YAY) up to 450 today, great news sure, however Scott's platelets took quite a hit from last week, we are now at 130.
High biliruben again.
The doctors are holding the bma again, it will be done next week if we are not at 750.
So we have a bit of a mess, and I just dont know what to think.
Thank you to Steve, Susan and Taylor for your kindness and love and yeah, thanks for the prayers too. You guys are amazing.
Monday, December 17, 2007
Thursday, December 13, 2007
Wednesday, December 12, 2007
Tuesday, December 11, 2007
That is Stephanie's dad, Graham, in that picture. She took it while we were on a little boat journey just over 2 weeks ago. Graham was here just 10 days ago, and I wrote about how I hated when people left at the end of a visit.
After getting home from clinic today, we were all a bit upset with little progress in Scott's counts and the usual uncertainty that comes with delayed treatment.
Shortly afterward, we had a call from Christine, Stephanie's mum. We didn't get to the phone before the machine got it, but Stephanie said her mum's voice sounded as something was wrong. Stephanie got back with her.
Something was most certainly wrong.
Stephanie's lost her dad.
I'll not go into details of how things were found out, but Graham was found dead in his home in Ireland today. We don't know many details, except that it happened either Friday or Saturday, and whatever happened was sudden and quick.
I'd just met the only Father-in-law I've ever had 3 weeks ago today. He was a very kind man, and upon us parting at the airport just 10 days ago he told me "thanks for taking care of Stephanie". And then he was gone. Little did any of us know.
It's very late and I'm very tired and weary. Everyone here has taken this very hard. Our nerves were shot to begin with, now they don't exist any longer.
I'll leave you with a couple of pictures taken the same day as the one above. Graham was taking a dip at the beach off John's Pass. I kept taking pictures, as I wanted to catch him in the setting sun to see if they would turn out ok. We had no idea his sun was setting. The last one is, well, just Dad and Daughter.
Rest easy Graham. We all love you.
Monday, December 10, 2007
That is encouraging, as relapse would be the most horrific news. However we're just in another holding pattern until Thursday's clinic visit, which does nothing to change us from having frayed nerves for another 3 days.
Scott is very upset at the news. The reason why is telling evidence of what this disease does to everyone. He's upset because - to quote - "I wanted to get my chemo and start steroids". It is a sick, twisted situation which makes a child of 11 understand what chemo is for and to be that upset when he can't get poison shot into his body.
So I believe Scott, Stephanie and I may hang around the rest of the day trying to do something mind-numbing.
Thursday, December 6, 2007
But all is uncertain.
Just endless worry until Monday. Nothing removes the worry. Nothing removes the fear. There is simply too many twists and turns and possible combinations of factors which can cause counts to stay low.
It a sad perspective when we sit here hoping Scott's fighting a virus. Or hoping it is just that his body can't handle the Bactrim and the schedule of chemo in maintenance and bounce back to the proper levels.
That's what happens if things are good.
Things really need to be good come Monday's tests and BMA.
A bit of a good note tonight (actually a great note, but we're a bit subdued here). Scott's buddy Pat won the Viewer's Choice CNN Heroes Award. It was on live tonight. We're very happy for Pat. Scott was quite excited when they said he'd won.
The doctors have taken him off Bactrim (antibiotic) and put him on Dapsone, Bactrim has been known to lower counts, we are hoping this is the case. It is also possibly viral, although the only sign of ill health recently has been a sore throat - 2 weeks ago!
David and I are very, very scared.
Scott is obviously upset and concerned, but also he is sad at missing tonights outing (due to low counts/neutropenia) that the Children's Cancer Centre had arranged. They were going to have their portraits taken, then on to Build-a-Bear (which he loves) and then icecream.
My fear is overwhelming.
Edit. I have just had a nurse at St Joes call me, the bma has now been brought forward to Monday.
Monday, December 3, 2007
You see, awhile back a couple of very nice ladies from the Brandon Foundation stopped by the house. They are a local group of folks who have only one goal - to help out families in the Brandon Community. I know that sounds simplified, but doing just that is what makes a "community". During their visit, we basically talked about what the Foundation does, and then they asked what type of things they may be able to help with. Of course all Stephanie and I could think of were things for Scott, and we told them he was asking for a comfy bed (which I posted about a few weeks back when we were called literally days after their visit to go and pick one out). Stephanie had mentioned Scott was going on about Christmas lights on the house. He wanted to decorate the house with lights for Christmas. We'd been doing some looking around for lights and such, but Stephanie would stop me and say "it's too early" or "let's just leave it today, we have other things to do".
I never knew this was in the works. Only Stephanie did.
Sunday, I suppose shortly after we left, a small army of folks from the Foundation's Angels Among Us arrived. I was told they were here somewhere between 2-3 hours. They were here for no other reason than to make sure Scott had lights on his house for Christmas. For the record, here's a picture of them in action:
And here's most of the group, minus a few of the wee ones that had retired to some A/C:
I know Natalie Brock is in there. As well as Shawn Trotti and her husband and I believe Liz Brewer. It's hard for me to remember all these folks, as the last time I saw them (and the only time I saw most) they were dressed to the nines for the Foundation's Evening of Hope I attended.
We are all just staggered and extremely thankful. Such people - most being folks we don't even know, a few we've met briefly - taking time out of their weekend to make sure a kid dealt the hand to deal with cancer has lights on his house for Christmas. I'm humbled by such an action, and I don't know if I could ever properly thank each and every one of these wonderful people.
During conversations I have with different people about this ordeal, the subject of "losing time" seems to always come up. Simply dealing with cancer as a parent robs you of time, regardless if things are going well or not so well. Time is in short supply most every week. For virtual strangers to give some of their's is truly a priceless gift to us. The folks in that picture above are some very special people indeed.
Saturday, December 1, 2007
It pulls you into a sort of shell. Sort of like a turtle does when something is around it's not familiar with - the turtle just pulls into his shell for the comfort and protection. Inside the "walls of home" things seem at their safest. Tucking the family away inside brick and mortar is akin to pulling into that shell.
I believe it is because that allows one to insure the family is in the safest place possible - regardless of what is happening. Because the ultimate priority is to protect and care for the family.
A situation as this puts one at odds because you can't hide in the shell. The enemy is within the child. Hidden from Stephanie and I. It's only predator being concoctions created by other people designed to kill the enemy, but with uncertain success and uncertain side effects. But it is the only weapon.
It makes one powerless, because protecting the family is not done on a first-hand, direct basis.
The family is what matters to us. Stephanie, David, Derry and Scott. Of course that's the family within the proverbial shell here where I type.
The family certainly expands beyond the immediate shell, somewhat of an extension of the shell.
I write about "family" sitting here late tonight because endless thoughts bound through my head. Sparked by many things. Many actions from the extended shell.
The instant action and shelter Stephanie and the boys received after being forced back across the pond. Christine. Mo. Lorna. Nana. Other options available with Graham.
Having my parents come down each year just after the traditional family Christmas Day Mania which happens in the house I was born in each year, but I've missed most years since I moved. (Not to mention all the packages that have shown up since Scott got sick).
Christine and Eric's visit in the "good" times which is now in a corner of our minds labeled "Before Cancer".
Having my sister appear at the hospital the day after Scott was diagnosed, having just flown down after leaving my dad's hospital room as, ironically, he was in surgery the very same day Scott's was put under for the bone marrow aspiration that confirmed our fears.
Christine returning on very short notice when Scott suffered the stroke. All the way across an ocean just to play taxi driver and whatever else we needed.
Graham coming over and all at once having to catch up with Stephanie and the boys, meet a son-in-law for the first time and get a whopping dose of the cancer life all at once. Also getting to swim in a sea and an outdoor pool in late November, and that Great-American experience of shopping the day after Thanksgiving (for the record he REALLY liked Sports Authority, and we hope he got everything he bought back okay).
And lastly, today something that just floored Stephanie and I. I thought someone had lost their marbles paying so much to mail a card (it was sent Express Mail). Luckily they haven't. What was in that card I'll only say was everything we'd always done at Christmas, but it all ended up here. A little piece of white note paper in the card was the most valuable thing in that envelope to us.
My point is, all the things I mention above - while seperate instances - are just one thing. All those things are simply "family".
The perspective of things change drastically when a child is diagnosed with cancer. You really learn what really matters.
What really matters?
Nothing is more important.
Yes, our family is battling a bitch of a beast that infiltrated the shell. There's nothing easy about it.
But we are thankful our shell spreads far and wide.