Clinic day, and thankfully his counts came back up, good enough for chemo. Another week of low counts and I'd be hunting down the nearest crack dealer! Like I've said before, I dont do worry well.
However his biliruben was elevated so it meant they could only give a half dose of vincristine. Biliruben is a liver enzyme I think and the fact it is elevated means his liver is kind of pissed at all the chemo. Or something like that. Dr Rossbach didnt seem concerned and I had him check over all his different counts and look me in the eye and tell me all was well. Which he did. I'll still worry though. He said it wasn't anything desperately unusual, just got to keep an eye on it. My friend Mary Lynn and her little girl Sierra were at clinic too and Mary Lynn told me that Sierra had had the same thing a while back and not to stress out about it. But she did and I will. Its par for the course. Its a heartache and a struggle to deal with the leukemia but every now and then something else is thrown at you. I used to have this goal, the promised land of 'maintenance', but then you get there, your sanity in shreds, only to discover that the body is so torn apart it may as well be the Bierut of induction.
Well thats all for now, Im getting depressing again, so I'll STOP!
Love to you all.

October 17

Well, today is October 17 (or it will be in an hour). A date with two very significant ties.

As I write I recall this day 3 years ago. Stephanie, Derry, Scott and I were bunked down next to Gatwick, awaiting our flight back to Tampa. The end of the "Deportation Debacle" had come. Just the day before a courier had delivered their passports to the Denewood in Sandown with nice new visas in them. All the struggle would be over. Little did we know what the next 3 years would deliver.

I can't put into words just how nervous I was flying over to London just a few short days prior. Horrified something else would go wrong, and no visas would be issued. That short visit across the pond was a blur. Get to London. Walk the streets of London soaking wet. Doctor visit, photos....the US Embassy (ugg). The 16th came and was the day we had to leave the island. I'll never forget us on the WightLink ferry looking back to Ryde Pier. Stephanie's mum (Christine), Aunty Mo' and Nana all there on the Pier waving. Then the folks that were a true savior during that debacle, whom I can never repay, drifted out of sight. I want so badly to return to that ferry, to that pier and see those 3 remarkable folks and such a wonderful island. It's a short train ride from the bustle of London, but seems a world away. We planned to be back for a visit this past summer, but, we all know those plans had to be changed.

But it all worked out that trip, and on the 17th we flew back to Tampa. All four of us. Through passport control and customs fine. Finally together in our new home. It is obvious I would change one thing that has happened since if I could. But that isn't possible. We've taken on our fair share of struggles, that is for sure. But we keep pushing on.

Since that day, I've truly had "my" family. Yes, I have a wonderful set of parents and siblings, but you all know what I mean. Stephanie. The boys and me. The core of what one is to do in life. I love them with all my heart. It aches when there is a struggle. There is no better feeling than to see smiles on them when good things happen.

I don't know how it happened, as the timing of the visa letter was far beyond our control. However it all resulted in October 17 being the date we got back.

The day also makes me think back 6 years ago. The worst day of my work life. It was the day my close friend and coworker, J.R., died on the job. I won't get into the details, but he died from a fall. I have the nightmarish memory of being in the room when his wife was told, as I picked her up at their house and got her to the hospital. I'd left work and talked to him less than an hour before it happened. And just that quick, he was gone.

J.R. had a wife and two teenage kids. He left for work one morning, like most all of us do, but this day he didn't come home.

It was heartbreaking on that day. But until that exact date 3 years later, I didn't truly realize how heartbreaking it was for his wife and kids. At the time I'd never had a wife or kids. When we got to our house here, I remember admiring the entry stamp on Stephanie's visa. It was then that I realized the date on the stamp.

It was then I realized what the true effect on J.R.'s wife and children must have been that day. I think we all just collapsed in a heap that night.

Take some time today, and each day, to appreciate what you do have.

Bears, hairs and getting a whooping from the opposing teams hockeys players.

The least said about todays hockey game the better. So instead I'll just post the photo of the coach offering round cyanide capsules and maybe you'll get the idea...

So anyway, Derry's been in a foul mood and been bickering with Scott all day long. They even managed to argue about the ownership of a rubber band! So I took another happy pill, read a little Bill Cosby and found this on youtube for Stephanie Krupa, one of my dearest friends, and it is true, laughter is the best medicine. I was going to post the one about 'Oasis' but I know my Nana reads this blog so I changed my mind. Also this clip reminds me so much of David and Derry and their weekly grass cutting 'discussions'.

http://www.youtube.com/watch?v=YJ7a3HGnS1I

I would like to say thank you to my friend Sandie in New York for her humour, generosity and kindness. There is no way I could describe the daft history surrounding this but yesterday when I went for a little pampering at Toni & Guy I discovered that she had paid for it all, paid the tip and also had a goodie bag waiting for me at reception!!!! All the receptionist knew was that the benefactor spoke with a NY accent. It could only have been Sandie, its a girl thing, a hair thing, a gay Brazilian thing, something she knew I needed and wanted to be the one to give it to me. Its been three years since I have seen Sandie, but someday soon, when Scott is better, Sandie knows a great dump where the bears feed up in NY state somewhere. We'll play chicken and see who can sneak up the closest and one of my dreams will come true. Thank you Sandie.

Speaking of the bear, here is the trailer to my (and David's too I believe) favourite documentary. If you ever dont know what to rent next time you are in Blockbuster, choose Grizzly Man. There is nothing that I could write here to do this documentary justice, it is beautiful and sad and I am so envious of Timothy. He truly lived.

http://www.youtube.com/watch?v=ogYDUmIigw0

Anyway I know y'all come here to check on little Scott and not me chuntering on about everything but, so here he is, being a spaz with his friends, Evan and Sam. As you can see he has a little bit of fuzz starting to poke through and hopefully soon he'll also lose the 'Casper' look too. Ive even got him wearing his old glasses now, much nicer. I hope so much to see Scott look like Scott again, its starting to happen and I just cant wait.

The Hockey page

Just a quick note before I'm off to bed. Derry's hockey coach has put together a nice web page for their team. He has a game at 11 in the morning.

Click here to check it out.

Scott and Derry both had a good day today. Stephanie can post more about why they did tomorrow.

That's it for tonight. It's late and I'm beat!

Its late and everyone is asleep except me. My eyes are watering because Im yawning so much but at the same time Im wide awake and have been trawling the internet reading about bone marrow transplants. A real optimist aint I? I think, no I know, I am becoming scarily paranoid about this whole thing. Worried sick about t-cell renegades rallying themselves for an all out war against my baby. I find myself searching the eyes of the doctors and nurses looking for signs that they arent telling the truth, the whole truth and nothing but the truth. Do they see tell tale bad omens in his blood analysis but arent telling me? Scott had sore legs yesterday, and yeah I know, probably from his recent roller blading, but every half hour I'm questioning him about the pain. "On a scale of 1 - 10 how bad does it feel? Is it any better than an hour ago? Is the pain spreading?" Our cats still seem to migrate towards Scott just as they did prior to diagnosis and in the early days and weeks, I hate that they do that! I wish they would stop and treat him with as much disregard as they do the rest of us. Do they know something I dont know? Today I had to take 2 crazy pills to stop my heart from beating so fast! I hate this shit. We all do. We are all tired and grumpy and bitchy. We are entrenched in a world of pediatric cancers and it feels like every week we hear of a child dying. It may be a child whose blog we have been following, it may be someone we know, and every time it happens it knocks you deeper down. We wander around in a daze for a while, saying nothing, feeling the horror, sadness and misery, feeling downright pissed off at the world. It doesnt seem fair. But life isn't fair, survival of the fittest and all that. Yet even with the most pragmatic approach you cant help but cry yourself to sleep at night wondering, 'why my child'? Cancer is a cruel disease, it twists the knife, it makes you suffer and I hate it with so much passion it's probably not healthy. David, Derry, Scott and I have walked the halls at the hospitals, we talk to the patients and the parents, we see how it ravages the body and the mind, and the thing is, its not for weeks, or months, this torture can go on for years, and still the dreaded 'r' word hangs above all our heads even years after the cancer has "gone". Then there are the side effects, the long term and late effects thrown in for good measure.
Och well, cheery reading huh?! Be grateful I edited out how I REALLY feel.

Driving for Donors

Clinic day again and Scotts counts fell well short of being able to get his chemo today. He didnt seem to mind but it bothers me. I like to know that the leukemia is being constantly attacked and any drop or rise in counts makes my mind go to places I really dont want to go. Now I have a whole 7 days of worrying. I dont do 'worry' well.

Anyhow, today was also the day that Scott's friend Pat rolled into town with his pimped up bus, his bulldog, 'Wrinkles', and his plea for bone marrow donors. Pat has ALL too and knows full well how crucial a bone marrow transplant can be in saving the lives of leukemia patients. So he chose to do something about it. Please take a moment to check out his website and see for yourself what an amazing kid and real life hero he is.

http://www.drivingfordonors.com/

Scott had been feeling dreadful until Pat arrived but soon perked up when he saw his friend and his cool bus. And ofcourse, now he wants a bulldog too. He even got a kick out of the paparazzi on his tail. You'll be hearing more from David and I about Pat and Driving for Donors but for now heres some photos...

Golfing like the Energizer Bunny

Well, the Dream Fund Golf Marathon was a success. The people handling the tournamet for the Dream Fund and Emerald Greens (the club we played at) did a great job taking care of the group of slightly insane folks that agreed to participate. They had everything covered - food, drinks, balls and ..... air conditioning for the carts. That really helped out as the temp had pushed up to about 92 by afternoon. All you Brits can ask Christine about temps in the 90's with our humidity here. It's lovely weather. For lizards.

I managed to squeeze in 108 holes. Looping the course 6 times. My fundraising total now stands about ~$2,960. The entire group of folks raised over $72,000 for the kids yesterday. That is a large sum, considering there were less than 20 guys (and 1 girl) golfing. Great evidence of a lot of big hearts our there.

I can only think what could be accomplished with a greater number of events and a greater number of people.

I'll also forewarn everyone - both Brandon and I have committed to the event next year as well. We both found it a great experience. Being a golfer, it is something quite "different" as a golf experience, and something I'd never done before. I've spent many days on the course from sunrise to sunset, but not playing at that type of pace. And especially not playing for such a reason, which provides a secret level of energy you sometimes don't realize you have inside.

We also got a couple of nice perks in a new, swank golf shirt and and getting to pick a new pair of golf shoes from the catalog.

Now, off to take a few Advil.

The charity golf event today was a huge success and David had a great time, although he is rather sunburned even after promising me he'd use plenty of sunscreen. I wont say anymore about his day as I'll probably get the details all wrong, Im sure he'll post and tell you all about it tomorrow.

Scott's day started off pretty bad. He was throwing up before he even got out of bed. Not a good omen for the rest of the day. I tried everything, pepcid, zofram, tums, ginger biscuits (cookies), queezy pops (thank you Angel Laura), finally at about teatime he started to feel a bit better and so we watched Gordon Ramsey and then went for a spin on the rollerblades. I told him (mean mum that I am) that if he didnt get out and get some fresh air and exercise then there was no way he would get to watch Smackdown. So ofcourse those blades were on before you could say ''Hornswoggle".

Some of the worst photography you'll ever come across...

Derrys good friend DJ (red/white sox)..

I need to figure out how to post video, got some great film of DJ's mom, another Stephanie, who was sitting next to me, she'd of made a great football (soccer) hooligan. lol.

Derrys other great friend (sadly on opposing team, boo, hiss), caught hooking, Bryan..

("2 minutes in box, feel shame!")

Like I said bloody awful pictures, sorry.

7-7 draw

Just a quick update on Derry's hockey debut. The teams played to a 7-7 draw. However, in his first "real" hockey game ever - DERRY NETTED A GOAL!!!!!

I was keeping the stat sheet for the coach and and got a bit of a shock when he shot and scored. Stephanie will update with pics later.

My skater boy ...

Scott was skating just hours before he was diagnosed. He was flying up and down the road and doing ramps and all sorts of crazy stuff. Little did we know that he had no platelets to have protected him if he had taken a fall. Thankfully he didnt. He hasnt skated since that day and words just cant say how happy we all were to see him back on his blades. I just cant seem to stop grinning.

"Let's play hockey!"

Its midnight and my sleeping pills havent kicked in yet so I thought Id write a wee post and show you all a few pictures.

We all had a wonderful night last night at the hockey game. And spookily enough the Lightning won!! This completely screwed our 'Lightning NEVER win when we're there' jinx which gobsmacked the boys no end! The score was 3-1 and Derrys hero Vinnie LeCavalier scored two of the goals, Derry just couldnt stop grinning. Scott was delighted too and said that this had been the best day he'd had in a very long time. Sadly the lovely Ruslan was headhunted by the Chippendales and is no longer with the team so I was on a bit of a downer but och well, the other teams goalie was kind of cute too. As you can see from the photos we got to the arena WAY early, the boys were desperate for front row suite seats, and it paid off. We were there even before the zamboni driver! Thank you to Brad Richards, Kasey Dowd and the Childrens Cancer Centre for such a fun night and wonderful hospitality.

Like David said on Thursday Scott is now off the Lovenox (blood thinners). When he had the stroke blood was drawn and tested to see if Scott had a genetic predisposition to clots, this could well have been possible since I had had a blood clot in my lungs and my grandad also had a stroke. Anyway, these tests all came back normal and the doctors agree that the clot was caused by the chemo leg shots he had been recieving. Since these shots are now completed and his last MRI was clear the doctors have said there is now no need to continue with the Lovenox. Scott is obviously so pleased. Me too, I had been feeling rotten at the thought of passing on some of my screwy genes and Scott having to face a lifetime of blood thinning medicines. But nope it was the chemo, (probably made from daisies and kitten kisses or something disguised to look pure and innocent, when in fact its a stroke inducing bitch flower from hell!). Anyway, no more Lovenox. Yippeeee.

Today Scott celebrated the end of runny blood by buying a very cool pair of rollerblades, pads, a new stick, puck and goalie net. Tomorrow he's hoping to get up early and do what he does best and BE A KID AGAIN :). I'll post photos of the scabs and bruises tomorrow evening.

Derry had his second practice today, his first game is Sunday and he's a nervous wreck. He's doing very well though and Im so proud.

My pills are really starting to work now so I'll add a few photos and then Im done. Goodnight and thanks for checking in.

YEA!

Just got some good news from Stephanie and Scott at the clinic - the docs have put a stop to the Lovenox shots! Hopefully in a week or so Scott's stomach will be rid of the heroin-addict look! Scott immediately chased down Doc Rossbach and inquired as to when he was allowed to rollerblade, and was told "24 hours after the last injection".

This is probably one of the most relieving bits of news I know I've gotten. Scott has to be ecstatic. Jabbing him every day was getting to be horrible.

Other than that, there is a bit of a hiccup this morning and Scott's blood was "lost" between clinic and lab. Another sample taken and hand delivered to the lab. Scott is reportedly in a very good mood still.

That's a good thing, as we are off to Brad Richard's suite tonight for the Tampa Bay Lightning's regular season opener (be cursed you New Jersey Devils!). This time courtesy of the Children's Cancer Center, and of course Brad himself and Kacey. For those who don't know or remember, Brad lost a childhood friend to cancer when they were in their teens. Brad worked hard and is fortunate to be a top player in the NHL, and he gives generously to a cause he is truly committed to and understands. He won the Conn Smythe Trophy in 2004, given to the Most Valuable Player in the NHL postseason. If there were a Conn Smythe for brightening the day of pediatric cancer kids in the Tampa Bay area, I'm sure Brad would get Scott's vote. The boy's love hockey. We love hockey. Scott's hockey playing has been postponed due to this disease, but he'll be back at it one day.

Even his blog is Lightning colors now that I think about it. Dunno if that was subliminal or intentional when Stephanie put them together.

This week's massive crave.

The lady at Wal-Mart looked at me sort of funny last night when I walked up with 4 or 5 boxes of these things. Stephanie bought a pack thinking it may be something Scott would snack on. He doesn't snack on them. He eats a box at a time. Luckily he took his last doses of roids last night, and the gorging should stop later this week. I think he cracked the 90-pound barrier on this round. He says he is striving to reach triple digits. He wants to crack through the 100-pound mark.

Derry's first hockey game in this coming Sunday! You can keep up with his team at this link:

The Pee Wee Grey Team (they've not picked a name yet).

And "Dave" the cat reappeared yesterday evening, this time sporting an orange collar. We're not sure if he found his way home and has escaped again, or if someone else in the hood took him in. I found him sleeping on one of the pool floats in the garage. He looked quite comfy and at home. Maybe he's trying to run away or something. He. I keep saying he. Dave isn't a boy, she's a girl. I know it is confusing.

Steroid Weekend

Scott's steroids have kicked in. He's on an "breadstick and chocolate" binge it seems. He's not had a chocolate craving with steroids yet, but that seems to be the thing this go round. He got a bit huffy with Stephanie today, as the bag had run out. He's also eaten two boxes of breadsticks in two days. An eating machine he is, and his gut reappears quickly. Have to get back by store tomorrow and restock before he decides to slash us all to death.

The tummy shots continue, and likely will until the next MRI is done. Scott does okay during the shots, but I think his tolerance level is reaching its limits mentally. He's been getting very upset and weepy after the shots lately. It is horrible all way around regarding the shots. His stomach now looks like one on some heroin addict. Just have to keep slugging along though. I hope it doesn't scar him for life.

Vincristine has delivered its usual pain, starting in the jaw. That really bothers Scott, as he's starving all the time and it hurts to chew as well. You'd think this all becomes regular and expected, but each time it is just as saddening and painful for him, as well as us.

In other matters it seems Dave the Cat found his way home. We've not seen her since Friday evening. I hope she's made it back safe and sound, she was a very friendly cat.

Derry had his first hockey practice on Friday. He'll be sporting #44 on his jersey. First game comes up a week from today. I'm sure he's a bit nervous, but he isn't letting us see it too much.

Not much else to really post, as we all just kind of collapse on the weekends at this point. I believe Stephanie and I suffer a type of exhaustion that isn't really explainable or typical. We sort of "auto pilot", then find we wake up at 10 or so one morning. Weeks are blurs, as single days seem hard to distinguish most of the time.

Lastly, it is only one more week until I partake in the Children's Dream Fund Golf Marathon. Everyone has been amazingly charitable, and I truly appreciate being past my financial goal for the effort. When I set out, I was doubtful I could get to such a goal. The generosity of everyone is a nice thing to witness. It is a great cause that has a very tangible, direct impact on kid's who have been dealt a bad situation. Thanks a bundle.

WARNING! PLOY UNDERWAY!!

Be warned the post below is a ploy to push "Dave" into favor as the FOURTH cat in our household.

Do not be tempted. Booger and Jingle are cats far too old to have a new cat enter their domain.

I'm sure I'll find a "lost cat" poster around the neighborhood tomorrow and return "Dave".

Dave.

We dont know who she is or where she is from but she appeared in our garage this afternoon and Scott has called her Dave. Awww!

Dave rocks!

Maintenance

Day one of maintenance started out pretty bad with Scott barfing up before we even left the house. This continued at the clinic along with a great deal of fear of having his port accessed. Scott was convinced that the piggy mucous would lead to his access procedure resembling a slasher movie.

So anyway he had his blood drawn from his finger and he had a bit of a lie down whilst we waited for the results. He was in a foul mood and so stressed he was breathing all funny. The bloodwork looked good again ...
anc -> 955
wbc -> 1.7
hgb -> 10.7
plt -> 235
good enough for chemo to start and thus port accessing.

The lovely Bob drew the short straw and did an amazing job, no flumes of blood hitting the ceiling, just a perfect access and an incredibly relieved Scott. He was given vincristine and methotrexate, but not the methotrexate of old, just a small dose to help keep the leukemia at bay and to keep counts within a certain range. If the anc gets too high he will be given a higher dose, too low and he will be given less. And no doxorubicon!! Yay for maintenance.

Due to the quite overwhelming interest in yesterdays fascinating fact - lol - today I found out for you all that vincristine (vicious and nasty pain inducing chemo) is made from violets!!!! Quite incredible that such an innocent looking flower can be a real bitch at heart.

Ever sit and wonder ...

what Scott's blood thinner/belly jab is made from?

Of course you do!

It is the mucous from a piggy's intestines mixed with a little saline. And no, absolutely not, Scott is not aware of this fascinating fact. It would hardly sit well with his vegetarian morals and an already pukey tummy. Hopefully the pig had a free range and happy life.

I wonder what chemo is made from?

The Xbox 360 Incident

I want to clarify the death of the Xbox 360 a bit. Some exceedingly generous offers have been made to resurrect the Xbox 360 capability within our confines. Trust me, those offers are hugely appreciated, but not necessary. Just a clarification here - the 360 experienced what is called the "red ring of death" on the front panel lights. It is a common problem which Microsoft acknowledged, and instituted a 3-year warranty of all 360's from the date of purchase for such problems. It's labled a "general hardware fault". Basically we called the Xbox hotline, and they just send a shipping box for the dead unit, we send it in, new repaired unit returns to us with a new warranty. All of this is done at no cost for the repairs or shipping.

So while we will be "Xbox free" for a couple weeks (not exactly a curse to some of us), the situation will remedy itself. It is a bit of bad timing, as Derry was all aflutter because Halo 3 is released TODAY. He'll certainly be the scourge of the gaming world at school and with his online playing partners. But he'll live through it, even if he gets a bit grumpy.

Again, thanks for the very generous offers. Lots of folks (and dogs) with big hearts around here.