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.

Sad Day

Sad because of what Stephanie posted below.

Sad because we sit in wonder about Scott's counts.

Sad because Matt Gliddon has relapsed.

Sad because it seems too many of Scott's normal "clinic mates" are inpatient this week.

Sad because I took Stephanie's dad to the airport this morning. I hate when people leave from visits.

We'll post more about the few things we did while Graham was here. He got to experience SmackDown, hockey, a boat and beach and clinic. We just have to hustle around to get to two Christmas parties tonight, and get Derry dropped off at his teammates house for hockey (he'd rather hockey practice than party).

Coincidence?

I have just been told by Callum, my x husband, that his best friend and co worker's son has been diagnosed with leukemia also. Very early days and not clear on the exact type yet.
The two of them worked together for about 10 to 12 years, they were lumberjacks and exposed to constant exhaust fumes (benzene!), both Scott and the other child were concieved during this time. The only other man they worked with died of lung cancer.
I had read before about pre-natal paternal transmission and thought this could be the cause of Scotts leukemia. I never really dwelled on the cause too much, it didnt matter, only cure mattered, and still does.
This news is very sad but also very eerie too.

The silicon chip inside my head is switched to overload

I dont like Thursdays.

Yuppers, its that day again and Im so damn scunnered Im not going to write much. Scott was supposed to start his 3 week cycle today, but you know what they say about the best laid plans and all that. His counts dropped from last week and his wbc and anc sucked. Well thats it, Im not saying anymore, or one of you would send the men in white coats to come get me and whisk me off to Bedlam.

Leukemia is one mean bitch.

click me

Pat is doing well in the finals but its very close. Just a few days of voting left, please click a little when you have a moment.
Thanks.

EDIT NOTE: I was typing away here at the same time Steph was. Just read both.

Not much word here since Thursday, as we've been rather busy. Friday saw us headed off to another Lightning game, which turned out to be another win against Washington. Friday night was Tampa Bay Fights Cancer night at the game. This was sponsored by the Yerrid Foundation. The same "Yerrid" (Steve) that put on the fishing derby last weekend. All the support groups were present. The Children's Cancer Center. The Pediatric Cancer Foundation. The Children's Dream Fund. The Leukemia and Lymphoma Society. Free shirts. Free food. We had a blast, even though we dumped Derry at his hockey practice (his choice) and took my friend Brandon along for the game. A special thanks to a person that donated primo seats in the AFS Club to us for the night. Stephanie manage to find a nice comfy couch where she could see through a portal and watch the game on the massive HD screen the Forum installed above the ice this year. It also allowed her to people watch and visit with her favorite NHL ref, who I think thought Stephanie was up to no good when he saw a strange man sitting next to her (That would be Brandon).

Saturday was a full day as well. Stephanie blew up the vacuum. Me and the boys went on a jaunt to a local store to meet Batista, one of the WWE wrestlers.

What a mistake. I never knew so many people showed up at appearances by these guys. The boys said they didn't want to wait in line for 2 hours to have the guy sign their dvd's. So we bailed after sneaking into the produce section of the market and snapping as good a picture as the 2-hour wait would have provided.

After that, we were off to Derry's hockey game. A minor miracle happened - they didn't lose! They didn't win either, another tie with the Black team, which has an old neighbor on it. Derry attempted to tackle Bryan (the old neighbor) during the game. The refs didn't call a penalty. He also did some smack-talking to another kid. He told us he said something bad to him, but won't tell us what. At least he's starting to play with some attitude, which is always needed in sports but also a fine line to walk.

Rushing home from there, I abandoned the family and headed to the Brandon Foundation's Evening of Hope. These are the folks that made the contacts to get Scott's bed, and are working on some other things for us. It was a swank affair (I had to wear a suit) designed as a fundraiser and recruitment vehicle for the Foundation. It is amazing at the number of folks in our community willing to help perfect strangers. A pleasant surprise. I did barely miss out on my bid for a round of golf for 4 at River Hills. Have to work on that.

Yesterday was "prep day". Stephanie's dad is likely landed at JFK in NY as I write this. He'll get down to Tampa later today for almost two weeks. This meant we had to buy a new vacuum, which the price shocked Stephanie. I told her to remember that if she tried to blow up the new one. She also loved being dropped at Wal-Mart on pre-Thanksgiving Sunday. It took her 2 1/2 hours to shop. LOL. Yard work done. Deck cleaned. I think she's breaking in her new vacuum at this time.

That's all for now. Scott is feeling okay at the time. He seems to have "motor mouth" disease the last several days. Just won't stop talking all day long. We just waiting for Stephanie's dad to arrive. The boys can't wait, as they've not seen him in some years. But also because WWE Smackdown/ECW is tomorrow night here in Tampa, and we'll be back to the Forum to see it. Thanks to the TECO folks for allowing me to purchase tix in their suite. Being in a controlled environment like that makes trips to crowded venues much less stressful.

Well, Hell hasn't quite frozen over but its getting there. Derry's team, the Ghost Riders, DIDN'T LOSE on Saturday!!!! They didnt win either, but a draw is mighty darn good.




Scott has been feeling great all weekend (touch wood), but this is probably due to the ... GRRR ... half dose. We have been puppy sitting these last few days which has thrilled him no end and he is so excited as his Grandad is flying in today from Ireland. Also, we have Smackdown tickets for Tuesday!! I hope my dad isn't going to be TOO shocked at the mindless violence!
Well, cant blether no more, got to go and clean, clean, clean, I may even make a cake. Got to create the "good little housewife" illusion. :)

Stoned

Another Thursday, another visit to the beloved clinic. And yet again, high bilirubin.
I didnt make it to clinic today as I had a bit of a problem. I was rooted to the bed! I woke up at 4.38am and couldnt move, not only was I stuck but I really really needed to pee!! I wont go into all the gory details but it took almost two hours, and the threat of an ambulance before I just decided that I needed to pee more than I cared about fracturing my spine, so with a bit of a swear and lots of bravery (LOL) I just sort of threw myself onto the floor (in a dignified manner ofcourse) and crawled forth, toilet bound. And got stuck there too.
So anyway my wonderful husband gave me the day off clinic duty but before he left with the boys he gave me two magic beans (which had probably been sold to him by a rather strange and wizened old man down by the chemo shop). So off they trot, I swallow the beans and before you know it Im flat on my back, cant move a muscle and spaced out of my skull. I would tell you all about my wonderful trip but cant remember a thing except that my telly had morphed into some freak spilling portal. Oh well, maybe now I understand my sister a little better. Ahahahahaha, she's gonna kill me for that!
By the time David and Scott got back from the clinic I was feeling pretty darn chipper, poor David's nerves were shot at having spent 5 hours surrounded by nervous cancer parents and lots and lots of pesky little children, and Scott was having a full scale roid raging meltdown. Then Derry got home, grunted at us and plugged himself into the World of Warcraft.
Later David took me to the chiropractor and she had the cheek to tell me I "had a knot" .. snort... I dont think so!! Several dislocated vertebrae perhaps, but not a knot. She slapped me around a bit, gave me a bill (and David a lecture on magic beans!) and told me to come back in a few days ... for another bill!
Just another day in Paradise.

Click me!!

Scott has been feeling dreadful, if its not pain its sickness, if its not sickness its the doldrums. Not a happy boy these last few days.
Thats all for now, we are all worn out and a bit down. I'll update tomorrow after clinic.
Please keep voting for our friend and hero, Pat Pedraja. I am so thrilled he won the Young Wonder's category, he is now up against the adults in the finals. Thanks for all your votes, keep them coming.
www.cnn.com/heroes

More on Thursday's clinic..

Scott's counts were fine and his anc was over 750 so we could go ahead with his intrathecal methotrexate which is done whilst he is asleep under anaesthetic. The procedure went well, a small amount of spinal fluid was extracted, which will be tested for leukemia cells, and then chemo was injected into the spine. However, and this has happened before, when he came around he was extremely emotional, depressed and weepy. This was probably due to the anaesthetic and within a couple of hours he started to cheer up, thankfully. Even though the procedure went smoothly, sometimes it doesnt and requires a bit of 'wiggling about' to get the right spot, he still says his back is very painful. Hopefully it will settle down in a day or two.

We then went for chemo and again his bilibuben was elevated, more than twice the upper normal level. The protocol is quite clear, only half the dose of vincristine should be given when the biliruben is high. Other meds, methotrexate, 6mp and prednisone, remain the same. I am obviously very concerned, not only because his liver is struggling to process all that is going on, but these medications, the amount and their frequency, are tried and tested and I dont want to give the leukemia the slightest chance of returning. T-cell ALL is a very aggressive leukemia and requires constant high amounts of chemo, anything less than that gives the cancer the chance to re-group and attack.

When the nurse came to administer the vincristine I think I grumbled "its hardly worth it really" but she told me that even at 1 and a half milligrams its still a reasonable dose. His normal dose would be 3 milligrams every 3 weeks, pre-b and b cell leukemia is 2 milligrams every 4 weeks. Damn those t-cells!

So anyway, not much we can do about it, just worry.

Today Scott is laying on his lovely new bed watching Roseanne. His back hurts, his legs and feet hurt (from walking around at the fishing yesterday), his jaw hurts (from the itty-bitty half-dose, grrr) and he is mad and hungry (from the steroids). He is also craving pizza again. Today nothing less than Papa Johns will suffice, anything other than that may end up in a complete meltdown and a possible homicidal rampage. So Papa Johns it is.

Thanks again to the Steve Yerrid Foundation, we all had a wonderful time. It was staggering how much money, time and love went into making the Fishing Derby perfect for the children. The kids even got to keep their rods and they were given tackle boxes with weights and lures too. Both Derry and Scott used to fish for pike in the Scottish lochs and yesterday has certainly rekindled those cold, damp, mosquito ridden days which for some strange reason they loved so much. Boys will be boys I suppose!

I'll leave you with a few more photos. The man in the white sweat shirt hugging Scott is Steve Yerrid, such a beautiful person to be sure. I believe the man in the grey top worked for the fish and wildlife commission, he was very sweet to Scott. The final photo shows the end of the day when each child was invited on to the stage and given medals, there were no winners or losers, every kid got a real nice medal with 'winner' engraved on it. It's a good job Im so ice cold or I'd have been bawling my eyes out. :)

A Full Friday

Lots of things to talka about, but I'll give some brief updates. Scott's clinic visit went pretty well yesterday. He had a spinal and intrathecal chemo, so his back is sore. His bilirubin levels were still elevated, so the dose of vincristine was halfed. We're not sure what to think of that, but the docs says getting things balanced on the maintenance schedule takes some time. We'll see.

The voting seems to be going good for Scott's pal Pat. Just keep it up everyone.

Today was a good day, which found us across the bay at the Vinoy resort in St. Pete for the Steve Yarrid Fishing Derby. This is done for the kids and is part of a weekend-long set of events laid out to raise money for pediatric cancer research. I'll post more details tomorrow - especially about the companies and folks involved, but wanted to toss up a few pictures from the day. Lots of kids at the event, and some really amazing folks volunteering and helping out. Everyone involved was exceptionally helpful and made sure every single person knew the day was about the kids, for the kids and owned by the kids. They taught them how to tie knots, how to cast and how to properly hold fish. Then everyone would yell and get cameras around each time a kid hooked a fish. The energy from everyone was wonderful. A great day.

Scott with a Big 'un

Scott with a couple of Ice Girls

I'm the fat grey-headed one. Wade Boggs is the other guy.

Please vote for Pat

All these kids are heroes but I would love to see Pat recieve the recognition he truly deserves. Please, please vote! Only two days of voting left and every vote for Pat counts. Pat and his family are working to save the lives of leukemia patients like Scott. Also click on the video of him to see what a charming and beautiful person he is. Also, and it's not cheating, get click happy, you can vote more than once! :)

http://www.cnn.com/SPECIALS/2007/cnn.heroes/vote/inc_vote4q.html

Here they are at clinic this morning, both kids were having a tough day (more about that later) but at least they had a little time before their medications for a video game and a smile.

"I want a comfy bed"

That's was a request from Scott some weeks back. It was during a round of joint pain caused by chemo coupled with restlessness caused by steroids. We didn't "overthink" the situation, as it seemed temporary during certain phases. I guess it is fair to say it wasn't climbing up the priority list very fast for one reason or another.

Then a couple weeks back, two women showed up from the Brandon Foundation. They were steered our way by Anissa, who is the mother of a little girl named Peyton who is being tretaed for leukemia as well. This is a group that just helps folks with different things. I can't think of a more concise way to explain what they do (and I'll dig out their website later today). The ladies that stopped by just explained the types services they could provide - all donated by local companies or individuals. They had a whole list and told us just to drop them an email after we'd thought about how they may be able to help us.

We thought about things on the list and came up with two things - some help with painting on the house and a "comfy bed" for Scott. So Stephanie sent an email out sometime Monday. Around about dinner time she had a reply explaining what to do about the bed issue. Someone (still not sure who) at Famous Tate had instructed them to have us come in and they'd donate a new mattress of a certain value to Scott. So off we went last night to the Brandon Famous Tate. The whole process was simple with the help of Jack Ryan at the store. He looked at the paperwork left at the store concerning Scott and basically showed Scott which ones he could have and to test them out, then tell him which one he wanted. Scott picked and Jack said "we'll do our best to have it there tomorrow".

And we had to do no more. No papers or anything. We also discovered one of the employees at the store, a young man in his mid-20's, is currently in treated for lymphoma. We chatted with him for a few minutes, as that seems to happen when you cross paths with someone else dealing with cancer.

I'm just floored and humbled by such things happening. The world is a very jaded, self-centered place these days. But among all of those types, some truly good people are out there. Willing to do or provide what is within their means to help complete strangers. We knew no one at Famous Tate. I'd never been in a Famous Tate store, as they are local to this area and I've had no appliance needs since we moved here. But I can guarantee you they'll have our business for the things they sale from now on.

We'll update you on how Scott gets on with a new "comfy bed".

A hug for Derry

.. from Dave (our cat who isn't ours but who seems confused and thinks she is!) shortly after the Ghost Riders suffered another brutal hockey loss.

Clinic

Sorry I didnt update yesterday with the usual Thursday morning clinic update but I couldnt be bothered. Anyway, all was well (kind-of), his anc was 1355 so we were able to proceed with his weekly methotrexate. Wbc - 2.2, hgb - 11 and platelets 201. His biliruben was high again though and if it stays high next week then Scott will once again only get a half dose of Vincristine. Not good! We need the full monty, got to keep pounding those damn leukemia cells. Well not much I can do but worry about it till then, so worry I shall!

Here is Scott and his friend, Neffy, playing on the N64 at clinic. Neffy has been through all this once already but sadly relapsed a few months ago.

As you can see Scott's hair is coming back in again now. This is quite usual in children with leukemia, whilst he is still being given chemotherapy on an almost daily basis, the very high doses are now behind him and for most kids the hair will start to come back. However, at any time during his 15/16 months of treatment still ahead it could all just drop out again. Whilst it is wonderful to see hair again and a little pinkness in his cheeks I am more than a little sad that the new growth is dark and not the mousy blonde he used to be (but fear not, I am a dab-hand with a bottle of hydrogen-peroxide!). A change in colour is normal and as it grows we may even see curls!!!!Ug.

Till next time.

Happy Halloween!!

Scott, or should I say 'Jason', had a great night and scored loads of sweeties, just a shame he couldnt eat any as he had to have an empty tummy for his 6mp (chemo). Halloween in America is quite different than in Scotland, my friend thought it interesting that in the UK, to get a treat you must do a 'trick', tell a joke or sing a song. She also thought the Guy Fawkes idea pretty cool too (the celebration/ritual of throwing a 'guy' on a bonfire in the village to commemorate the foiled plan to blow up the Houses of Parliament in 1605! Guy Fawkes was Catholic and the King of England at that time was Protestant). I miss Bonfire Night.
Anyway, great night for Scott, and David too, all dressed up in his old hag mask and scaring the cute little neighbourhood kids half to death. Derry refused to join in, apparently he is far too 'mature' for such silliness so he plugged himself in to some thrash metal and shot up zombies on the 360 instead.
Off to bed now, clinic tomorrow and hoping for good blood.
Oh and ps, a HUGE thank you to Grandmomma and Papa for spoiling us yet again with a big box of wonderful Georgia cookies. Much appreciated by all, thank you.

Happy Anniversary to Us!

3 years ago today I learned the American tradition of slapping your lovely new bride in the face with a hunk of cake!!

I have almost forgiven him but at least I got him back with an even bigger slab of cake! :)

I guess cake is better than what mother nature has been throwing at us lately!

Happy Anniversary sunshine! I love you. (ugghhh how I hate the sappy stuff!)

Hooray for JJ!

Or I should say JJ gives a hooray to an anonymous donor. Seems someone happened to see this story done by the local Fox station's Nancy Perla (there is a video link in the article which should be watched). The word is this person saw a replay of Perla's bit early Saturday morning. Before JJ's Saturday fundraiser even got started, someone called Channel 13 and wanted to get in touch with Maria. I've no idea whom this person is, but they have basically stated they will offer up the entire amount for JJ, including transportation.

I don't really have to say much more about such a gesture.

I am rather certain a couple of other folks played a role in getting this into the ear's of the right media folks, as it got picked up and on air very quickly when some calls were made. They will remain nameless by request. You know who you are, and thank you.

As Stephanie said, we've come to know JJ and Maria quite well, having met under circumstances no one wants to face. JJ came to St. Joe's and diagnosed just a week after Scott.

Watch the video.

At least JJ has her chance now.

Insurance companies and medical costs be damned.

"shiny happy people"

Today was good! No better than good, much better. It rocked! There were even minutes when I wasnt stricken with panic that "Scott has cancer"! I could look at him and see hope not fear. For the very first time in 9 months he laughed and smiled and goofed around, he didnt complain of any pains or aches, he seemed like the old Scott, like a normal, everyday, 11 year old spaz.

A new SUPER target just opened close by so we went to have a bit of a nosey around. David and the boys stood and drooled at the plasma TV's for a very long time and I went to check out their bread which looked much like the bread in Walmart so I wasnt very impressed. Then we walked around for a bit having a giggle at all the stupid stuff that shops sell and people with more money than sense just 'gotta have', like knives with snowmen for handles! For some reason that just cracked me up.

Later we went to Cheddars for our tea. Scott was brilliant, he ate and laughed and ate some more, he even had a drink of Dr Pepper (the only fizzy drink he can tolerate) and had pudding - a great big feast of cookies and icecream and cream and chocolate sauce! Usually the most he can manage is half a dozen chips (fries) then starts going a bit green so we leave. But not today!

Even Derry, our sultry teenager (and whose voice has started going all weird), is happy. The Xbox360 has been healed of the death rings and is home again. Yay for Bill Gates!

We have a busy week ahead, lots of good stuff to look forward to so here's hoping for more happy, feeling good days.

Clinic day yesterday, sorry I didn’t update but we were all a little traumatized! Not with clinic though, that went pretty well, counts all seemed okay, platelets a little lower than I was hoping for, but with a high anc Scott was able to have his weekly methotrexate. Whilst we were at the clinic Scott was also given a very high dose of antibiotics via his port as he had a dental appointment, this is done as obviously a dental procedure poses an infection risk. To the general ‘non-cancerous’ Joe public this would be no major deal, but could be very nasty to a child with a non existent immunity.
So anyway, off we trotted to the dentist, worried sick about how much damage the chemo may have caused, however we were thrilled to found out all he needed was a filling and a baby tooth pulled. No big deal right?! I won’t go all graphic on you but let’s just say it wasn’t pretty. David has finally stopped shaking but is probably traumatized for life and Scott has spent much of the day learning how to craft a voodoo doll (that looks like a dentist).
Anyway on to better things…. Scott received an invitation completely out of the blue, he has been asked to be on a panel of judges to decide and vote in the annual “Kids are Heroes’ competition at St Joes Hospital on the 13th November. It should be cool as one of his favourite hockey players is also on the panel.
Also, a HUGE thank you to Fore the Children, a local charity aimed at helping young people through their cancer journey. They have awarded a grant of $750 to Scott to pay for private skating lessons. As you know Scott can’t participate in team sports at the moment, a fall or a knock to his port could prove very dangerous, so any ice time must be one on one with no other kids liable to crash into him. Private lessons are not something we could afford at the moment so thanks to Fore the Children for their generosity and for giving Scott the opportunity to get back out there and do the thing he loves. He is still rather frail right now but we hope to have him back on the ice in the next few weeks.
I also wish to thank Scott’s chemo-angels for their ongoing support. Every few days Scott receives a letter or card or gift from Angel Laura or Angel Dave. The encouragement, generosity and kindness are much appreciated and make such a huge difference to Scotts emotional well being. Thank you also to Lisa Keeler for surprising Scott with a big box and a cool gift. He loves his planetarium and thinks you are an ‘Awesome Aunty’!
Update on JJ.
Her story has been picked up in the last few days by a couple of news stations and charities and I feel sure it wont be long until money is in place to pay for her to go to Sloan Kettering for her first round of 3F8. 3F8 will increase her chances of survival from 0% to 35%. I know that everyone who hears or reads about JJ knows that at the very least she needs a fighting chance and I can’t wait until I can post here that she is on her way. JJ has been through an incredible ordeal already but every time she bounces back and I think if there is any child who would do well with the antibody treatment, it would be JJ. For anyone local reading this please know there is a fundraising day for her tomorrow, details as follows:

Saturday 27th October, 11am – 4pm
Land O’ Lakes Community Centre
5401 Land O’Lakes Blvd (US 41 North)
FL 34639
http://www.caringbridge.org/visit/joyfuljaylin
Please visit the above caringbridge site to leave words of encouragment or comfort, I know the support means a lot to Maria and all your messages are passed on to JJ. Also, if anyone would like to make a contribution to JJ's fund please let me know and I will let you know where to send your donation. No amount is too small. Thank you.

Well that’s it for now, its late.
“Time for bed”, said Zebedee.

Some hockey and The Cycle

Last Saturday saw a mad rush to get in Derry's hockey game (start time 6:15) and the Lightning game (start time 7:30). The Lightning won. The Ghost Riders did not, falling 6-4 in a close, hard-fought game. We have to thank Jonny Murray (NHL Linesman #95 if you're watching a game) for the tickets to the Lightning game on Saturday. Great seats on the side in the lower level, and we got to see Jonny after the game, where he gave the boys pucks and got a bit sentimental with Scott. We also got to see ex-Lightning player Eric Perrin, as he was traded to Atlanta (whom the Bolts played Saturday). More thanks go out to Kacey Dowd, as she'd left passes for us to get up to Brad's suite during the game, where she informed us of the upcoming kickoff for the Brad Richards Foundation. We'll post more on that when all the information is public.

Now on to "Scott" topics.

Sometimes folks ask “Is Scott done with his chemo now?” That is a hard question to answer when asked by someone not privy to all the gory details involved with a leukemia treatment protocol. Yes, he has completed all the dosages of certain drugs and treatments (Doxorubicin, High-dose Methotrexate, radiation and Luvenox). But Scott will be “done with chemo” (if all things stay on schedule) sometime in March 2009. Just to give a bit of insight to what he (and we) deals with, I decided to give a summary rundown of how his cycle works. And this cycle is the “maintenance” portion of his protocol, which will be the case from now until Week 108 (this coming Thursday will be Week 38). I think I have things mostly accurate and have included everything, Stephanie will correct me if not.

Keep in mind the following:

Steroids need to be taken with at least some food in his stomach.
Bactrim should be taken with some food as well.
6mp (which is a chemo drug) must be taken at least an hour prior, or 90 minutes after eating.
Pepcid is taken when needed. As are Tums. As is Benadryl to help sleep. As is Ativan when necessary at home. And Tylenol w/Codeine.
The IV drugs in clinic tend to be pretty good at causing nausea and vomiting, even with premedication to prevent such.

All of the above makes some of the drug days a juggling act which Stephanie carries out with sheer will. At times she must be much colder and forceful than a mum should ever be required with a child on a cancer treatment protocol. Poor Scott basically only wants her and the clinic nurses to administer his drugs now. He’s not comfortable with me doing them.

The “cycle”, as we have come to call it, is 21 days (starting on Thursday) and as follows (today we are on Day 6 of the current cycle):

Day 1 – Clinic visit – Finger prick. Port accessed if counts above 750. Premedicated with Ativan, IV Vincristine and IV Methotrexate. Steroids start for 5 days, 3 doses totaling 150mg/day. 6mp starts for 14 days, given in the evening.

Day 2 – Steroids 3 times, 6 mp

Day 3 – Steroids 3 times, 6 mp, Bactrim twice daily. Steroid-induced, ravenous eating usually begins. Jaw pain tends to begin as a Vincristine side effect.

Day 4 - Steroids 3 times, 6 mp, Bactrim twice. Pain usually starts in back as well. Stomach aches start coming, as his stomach starts to be stretched by all the food he is cramming in. This weekend in the cycle is usually rough, as Scott tends to start the emotional effects of steroids as well.

Day 5 – Steroids 3 times, 6 mp, Bactrim twice. Pain tends to leave jaw, remains in back.

Day 6 – 6 mp. Pain in legs and feet, and sometimes back.

Day 7 – 6 mp, Pain in feet and legs.

Day 8 – Clinic visit – Finger prick. Port accessed if counts above 750. Premedicated with Ativan, IV Methotrexate, 6mp. Massive food cravings usually begin to wane about this time. Feet still hurt.

Day 9 – 6mp. If we’re lucky, foot pain starts to ease.

Day 10 – 6mp. Food craving mostly gone, but stomach is stretched and large amounts of stomach acid are still produced because he is now used to eating 4 times what a normal person does. This typically results in nausea and puking each morning for a few days.

Day 11 – 6mp. This weekend, while usually the weekend with his highest counts, is most times inhibited by lingering Vincristine pain and the erratic nausea from stomach acid.

Day 12 – 6mp

Day 13 – 6mp

Day 14 – 6mp

Day 15 – Clinic day. Finger prick. Ports accessed if counts over 750. Premedicated with IV Ativan, IV Methotrexate. This is when Scott’s ANC is at its nadir. Counts usually very low at this point, and he’s missed an IV Methotrexate due to an ANC below 750.

Day 16 – No scheduled drugs. Scott usually feels his best about this time in the cycle. Sadly, it comes at the time of his lowest ANC during the cycle, which makes preventing exposure to bugs, germs, crowds, etc most important at this time. This tends to have us forego crowds over the following week. So he feels best, but is limited to where he can go.

Day 17 – Bactrim

Day 18 – Bactrim

Day 19 – Bactrim

Day 20 – No scheduled drugs

Day 21 – No scheduled drugs

So there you have it. That is the “routine” for the next 18 months or so. Just some insight as to what he faces every 3 weeks. Maybe that will explain to folks why we sort of hesitate when someone also asks “How is Scott doing?”. That’s a very hard, relative answer.

Jaylin.

During the last 8 months I have become close friends with a wonderful woman named Maria, I have also come to love her daughter Jaylin (JJ). JJ has stage 4 neuroblastoma, a terrible pediatric cancer which requires chemotherapy, surgery, radiation therapy and stem cell transplantation. Low risk neuroblastoma has a high rate of success, sadly this is not the case with stage 4. JJ has undergone 8 months of hell, there really isnt any other way to put it, her treatment and side effects have been quite heartbreaking. But JJ has been so brave, even when in great pain she sings and smiles, she loves princesses and is usually dressed in the most beautiful princess dress you could ever imagine. She has had extremely invasive surgery yet astounded her doctors and recovered in no time at all. JJ is a gorgeous little 3 year old girl, full of life and potential but JJ desperately needs one other drug, 3F8. 3F8 is a mouse derived antibody and has shown great promise, 3F8 could well save JJ's life. I am probably making a complete arse of explaining this, so please read more on 3F8 here ...
http://www.mskcc.org/mskcc/html/3215.cfm
As far as I understand it though, this therapy is still experimental (but very succesful!) and guess what, due to this factor, her insurance company wont pay. I know that Maria has been fighting and pleading with them for weeks now and still they wont budge. Maria and JJ cant wait any longer, JJ needs this treatment within the next few weeks. The oncologists at St Joes and at Sloan Kettering in New York have recommended 4 cycles, each cycle costs 18 thousand dollars! I am not asking for donations, this isnt a begging letter, I promise. But please think of this little girl and her mother, and if anyone reading this knows of anywhere, anyone or anywhere at all, we can plea to for funding then please let me know.
I can be contacted at greasylake@hotmail.com and will pass on all correspondence to Maria.