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.

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.