Memories are old ghosts

Earlier I commented to Scott how nice it would be to bid farewell to 2007 and how it had been the absolute worst year of my life. He responded with, "no Mum, it has been your worst year of your life SO FAR".

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...

http://www.youtube.com/watch?v=PQWFuRwSP1Q

http://www.youtube.com/watch?v=1moDuSOC3ko&feature=related

What a day!! We are obviously all over the moon that Scott's anc had risen to a level where he can now restart chemo and keep on attacking those rogue leukemic cells. Huge relief also that his body recovered on its own without GCSF and more importantly to see his marrow is most definately working and no sign of relapse. His platelets are still a little on the low side which bothers me but the doctor didnt seem too concerned. No "unclassifieds" (very bad omens) were found in the bloodwork, his anc had risen well, still high monos and only a small drop in the hgb.

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.

WHEEEEEEEEE!

Just a quick note - got a message from Stephanie at clinic, Scott's counts are back up over 1300! He's okay'd to get back on his chemo regimen.

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.

"I built my dreams around you"

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.

I guess I should update. I'm not sure what to say though. Its all very confusing.
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.
Just scared.
Thank you to Steve, Susan and Taylor for your kindness and love and yeah, thanks for the prayers too. You guys are amazing.

We have been well and truly spoiled rotten over the last few days and I am so thankful for the support and love, we really need and appreciate it right now.

On Friday Scott recieved a beautiful build-a-bear puppy from Angel David and his family. What was even more touching were the photos of his daughters building/birthing the pup. Scott loves his bear very much and got all emotional that you care so much for him. Thank you Krug family!

On Saturday we were presented with a holiday gift basket from the Beacon Surginet Team at St Joseph's hospital. There was a gift card for each of us and presents for the boys. And that darn cat, Dave, who isnt ours but thinks he is, is very happy in his nice new wicker basket. So thank you very much to all who contributed.

On Sunday the boys' dreams came true. We had been invited to the Tampa Bay Lightning Christmas party but I had kept it all very hush hush, too scared to get them all excited in case Scott was sick and we couldnt go. We really shouldnt have with his anc being critical but if there was one thing that could cheer us all up, this was it!! So Sunday morning came and I told the boys we were going out to a very special and sacred place, Derry started whining and saying there was no way he was stepping foot inside a church and Scott got it into his head we were going to see The Cure!

By the time we arrived at the sacred and holy ice of the TBL the boys still didnt have a clue what was happening. Scott was still yammering on about seeing the Cure and Derry was having a crisis at the thought of being surrounded by Goth's and 'Emo People'. We checked in and the lady said "you'll be sitting with Johan Holmqvist, have a great afternoon". Well you should have seen their faces, absolute bliss followed by a kind of 'OMG he'll eat us alive' look. Priceless. Even David did a double take and asked the lady to repeat what she had said. I got to say a HUGE thank you to Sharin Nelson from the Childrens Cancer Center at this point, she knew Johan was Scotts hero and she dropped a bit of a subtle hint to the Lightning Foundation to have us seated with him. Thank you Sharin, you are awesome!

Johan Holmqvist is the goalie for the team and he truly is Scotts idol. Scott had dreams, and still does, of becoming a hockey goalie and admires Johan so much. Not just for his ability but he loves his attitude too. A while back we met him, very briefly, Johan had had the flu and the Lightning had just lost pretty badly. The boys had their picture taken with him and Johan had a bit of a wild and homicidal look in his eye. The boys were thrilled and thought he was 'way cool' When I said to them later that perhaps I had upset him by we asking for a photo they were like, "oh no, goalies are always angry!" LOL.

So anyway, we go through into a beautiful room, all decorated with Christmassy things, fancy tables and lots and lots of food. There were Christmas stockings on the tables, sweeties (candy) and a gift for the mums. It was perfect.

Then Johan arrived with two big bags of gifts for the boys and two goalie sticks. The boys froze and David and I tried to hold back the tears (saps!). It was all so surreal. Top of Scott's Christmas list this year was a Holmqvist jersey, little did he know he would be recieving it from the man himself. Damn Im getting all emotional writing this. :) They were spoiled and loved every minute of it. Jerseys and hockey sticks and blankets and hats and games and calenders, Derry even got a very nice new pair of hockey gloves. And the holy grail for Scott ... Johans very own hockey stick!!!!!!!!!!!!

We had a simply perfect afternoon. We talked about Sweden and Scotland and hockey and Johan made us all laugh talking about what goes through his head when he is playing. Scott was in heaven, Derry too although he was still in complete shock and absolutely gobsmacked. I hope Johan wont mind me saying he wasnt scary at all (off-ice at least), just a kind, caring and very funny man. I know I will never ever be able to thank him enough for his kindness and I know that none of us will ever forget our wonderful day. It was just amazing.

Today Scott has been wrapped in his blanket playing Smackdown versus Raw 2008, he must have told me a dozen times "my new best friend Johan gave me this game!!". Then when Derry came home from school the first thing he did was drool over his new gloves. How on Earth can Santa compete with a wild and windswept crazy hockey player??!

One final thank you. To Angel Laura. The postie arrived today with a big ole box which Laura had filled with gifts and poems to represent the 12 days of Christmas. What a wonderful and very clever surprise and Scott, again, was quite overwhelmed. Thank you so much.

We really have been spoiled these last 4 days. But I want you to know that we are so thankful to you all, each of these wonderful things has really and truly helped bring a smile to all of our faces. We are all grieving my dad and worried sick about what Thursday's bloodtests will show but the kindness and love has really helped us through what could have been a very depressing weekend.

Thank you all.

I shall leave you with a beautiful video that my very clever friend Anissa made, Scotty and I are now famous and are on youtube. Eeeeeeeeeeee! Cool huh! I am the wretched looking skank in the orange top. A picture that was supposedly deleted! Aha yeah right, sure dont look very deleted to me! LOL. Beside me is the word 'committed', hahahahaha, it won't be long, Bedlam is calling!

http://www.youtube.com/watch?v=I9n2imsHihs

Oh and one last thing, Vinnie Le Cavalier's bottom :) ..........

Scotts anc this morning was a whoppingly crap 130. The horror of this week has reached a point where I now find myself laughing.

It seems, from preliminary findings, that my dad died from a heart attack brought on by diabetes. Tomorrow he will be cremated in Cappoquin, County Waterford, without me there to bid farewell. Four Scottish thistles will be placed on his coffin from our family in remembrance of better days amongst the heather.

The doctors still seem optimistic that Scotts counts will bounce back. All we can do is lean on their wisdom and hope they are right. He has one more week of grace and if no improvement is seen by next Thursday a bone marrow aspiration will be done. With such a low anc he is at critical risk of infection so he will be drinking and bathing in Clorox over the coming days. :)

My stomach feels like a blender going full throttle and my head is pounding. I am smoking again and cursing like a wizened old dock worker. My heart is broken. Yuppers, full scale pity party going on in our house for sure.

And we'll all go together

And pick wild mountain thyme

All around the blooming heather

Would ye go, Daddy would you go?

If you can get youtube in heaven

this one is for you dad ...

http://www.youtube.com/watch?v=46EXY4oP1Do

When you think things can't get worse

Somehow, they always find a way to do just that.






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.

Counts still suppressed

We're just done with clinic. Scott's counts are still supressed, with his ANC being 308 today. This was discouraging, as we'd hope it had bounced back up since Thursday. A bone marrow aspiration was tentative today based on count results. However, after review of the last several counts, Dr. Wynn didn't believe it necessary. It all involves a lot of detail about cell biology and how certain readings relate to certain situations. Dr. Wynn is confident Scott's counts are still low due to some type of bug or infection his body is fighting, and said nothing in the chemistry or blood count points to relapse.

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.

This is a very scary issue indeed. Everything is so uncertain with cancer. Some logic explains this is caused by Bactrim. Or by a slight bug Scott's body may be fighting off. Or by a combination. One marker in his blood work was elevated, that is usually only elevated by the body battling a virus.

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.

Come come come, nuclear bomb!

Scotts counts have dropped even lower than last week. We are scheduled to test his bloodwork again on Monday, if it is over 750 we will start chemo and all will be wonderful. If low on Monday, we test again Thursday, if low, Scott will have a bone marrow aspiration to check for relapse.
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.

Another pleasant surprise

While Stephanie and I sit worried sick about Scott's low count at clinic last Thursday, Scott seems energetic and active. He doesn't seem weak or tired. Does that help us worry less? Not really. Nothing wil remove this round of worry except better counts this Thursday.

We had another pleasant surprise Sunday. I have to preface the whole situation a bit. Stephanie asked me during last week if I could take the boys out Sunday for several hours. Not an ordeal at all because Derry's hockey game was Sunday just before noon, and we could ride about and do a few things if we wanted. She told me not to ask her questions, so I didn't (as I'm a good husband...lol). To be honest, I thought she just needed some "alone" time like we all need now and again.

So we get ready to leave yesterday and she says "now you can't come back until I call and say you can". Which seemed odd, but I wasn't about to question anything.

We went about our business. Sat down to eat lunch and my phone rings. Stephanie says we can now come home again whenever we're ready. We track back and as we get home we see this in the yard:

Yes. The picture isn't doctored. That inflatable snowman is really 12 1/2 feet tall and drawfs Scott. Plus there were lights everywhere, approaching Griswold level:

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.

What really matters?

Living through this nightmare of "kid with cancer" is never easy. Nothing about it is remotely easy. No one except other parents of "kids with cancer" understands the things that go through our minds. Not the thoughts or the fears.

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?

Family.

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.