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.

Bury my xbox at Wounded Knee.

Scott has had a bit of a rough weekend and continues to feel like he’s been dragged through a hedge backwards. He is struggling to eat much of anything although we are managing to keep him hydrated. He has been sick a couple of times even with anti-nausea medicine and has no energy. It’s a vicious circle, without the fuel in his body he has no energy, and with no energy and feeling very puny he has no appetite. He seems to get indigestion a lot and I’ll be asking on Thursday if they have anything that can help him with this. We also hope that with the start of maintenance and the end of doxorubicin he’ll start to perk up in the coming weeks. Or maybe not, LOL, our xbox360 died yesterday! It was horrible, simply horrible.

He did get a couple of very nice treats this weekend though. On Friday Scott received a remote controlled car from a charity named Cody’s Wheels of Hope. The charity was started by the family of Cody Scott Filson who tragically died of cancer days before his fifth birthday. Whilst Cody was undergoing high dose chemotherapy he saw another little boy playing and gave him one of his beloved and unopened Hotwheels cars and it was with this memory that his family started Cody’s Wheels of Hope. So thank you very much to Cody’s family for this wonderful gift. Scott loves it and I have to say, as you can see from the photo, it’s a beauty!!!

On Saturday we were invited by the Pediatric Cancer Foundation and Brad Richards (star player with the Lightning) to attend a practice game. Scott was also asked if he would like to ride the zamboni but the idea of all that attention freaked him out a bit and he declined. It was a good game, but as is usual when we attend, they lost. Our reputation stands! The boys all had a great time although Scott was incredibly weary and barely had the energy to make it back to the car after the game. Thank you to the PCF, to Brad and also to Kasey for another great Richy’s Rascals night out.

Thank you too to Carolyn for always remembering Derry throughout all this. He loves it when you fuss over him and goes all coy when he reads your cards.

Well that’s it for now, gotta go and convince Scott to eat a little something. Thanks for checking in.

Here's Scotty with the lovely Brad Richards and also with his friends Amanda Verity and Nikki Hawkins from the Childrens Cancer Centre...

Absorbed. I think.

If I've learned anything since January, it is things aren't absorbed in real time regarding such events. We're now almost 2 weeks since Scott's discharge, and Sunday will be 5 weeks since we took off to the hospital due to fever.

5 weeks. Over a month now. 22 days past learning he had a problem in his head. And all the things that happened just now seem to be truly processing in my mind. It is as if you wake every now and again from a nightmare and try to sort it all out in your head. Some parts make sense, but it never all seems to be a puzzle which all the pieces are found.

Since January, I sit at times and just feel the realization - Scott has cancer. Same way tonight with the latest issue - Scott had a stroke. It doesn't come at a given time. Doesn't come when you're trying to sort it all out mentally. It comes when it wants.

When the things actually happen, they seem surreal at that time. Until your brain seems to fit the puzzle together and let's your body actually work somewhat normally - that's when it all hits you like a truck full of bricks. The whole ordeal is an unimaginable pain deep somewhere inside. You can't pinpoint it to your stomach, heart or head. It is just a biting, non-stop pain. You read about kids with cancer. You read about people having strokes. You think "that must be awful".

The reality is far more awful than any of those things you can imagine. The pain doesn't disappear with a couple of Tylenol and a glass of water.

We're supposed to be able to protect our kids, and at least help them deal with the unfortunate things that happen in life. This leaves you feeling like a bumbling oaf, helpless to fight something you can't even see. Helpless to really 'make it better' for the little kid looking to you as the savior or the one that can 'fix it'.

But it is no dream. It is very, very real. Stephanie has somehow done very well in dealing with the shots at home. It's horrible for a mom to have to stick her son with a cold needle square in the stomach twice daily. We're supposed to be the one's that come when the bad things happen. Ward off the dangers. Now she has to be in the role of "person with needle". Scott really is a champ with the shots most of the time. But sometimes, like tonight, he's just a wreck before it even happens. It's terrible and you want to just say 'ok, we're not doing this tonight'. But that is not an option. Diligence is mandatory, and can never be slack.

Scott and I went to clinic this morning, and he was full of beans as Stephanie says. Very good mood and even wanted to visit the inpatient floor (something he rarely has a desire to do). The nurses on today were pleasantly shocked to see "Scott". The last time most of them saw him, he was far from himself. The last time some of them saw him, "Scott" wasn't home. He happily showed them his poor tummy, which looks like a battle zone of some type, which is also something he certainly would do nowhere else outside of home.

He's come back from this horrifying event in an amazing (to us, doctors and nurses) manner. I'm very hesitant to say he's like it never happened - but that is the way he's acting. I'm hesitant because the fear this beast puts inside you. Fear of too many things to count. More fear than the brain can process at times.

I think that is the worst thing about Scott's disease - it makes your brain work in a way that nothing seems certain. Like the doctors seem to always say - there are no guarantees.

I'm not writing all this to be a downer for folks. I just trying to give some insight into something that doesn't work in logical terms or adhere to any given schedule. His protocol is a schedule, but a schedule that is quite fluid with any bump in the road. This was no bump. It was a mountain. I'll never forget Stephanie saying the words to me - "David, what if he doesn't come back?"

I can't recall the exact thoughts I had when she said that, and I probably don't want to recall them. But I do remember at that instant, with all that is happened to Scott, I felt more helpless than I've ever felt in life. I had no idea what to do for her. No clue what to do for Scott. How do you explain to Derry what has happened? No clue how to deal with it myself.

We do have our Scott back, and we have him back much quicker than I think either I or Stephanie or any nurse or doctor would have ever guessed. And we are ecstatic about that fact. But we remain wary. Remain on guard. There is no rest with this enemy. It is an absolute bastard that must have a glaring eye trained on it nonstop.

I am pleased to report Scotts lab work today was looking good.

hgb -> 9.2
wbc -> 1.6
plt -> 213 (YAY for the platelet king!)
anc -> 720

No chemo today so hopefully we'll have a happy and pain free Scott for the next week. Today is the start of week 33 and next week, drum roll please, we start maintenance!!!! I hate to jinx us but this should mean the beginning of better days for Scott. He has 75 more weeks of his protocol left, and Im sure many more bumps (small ones hopefully) in the road, but all being well that 'just been run over by a bus' feeling should be a thing of the past. He will have weekly IV methotrexate, vincristine every 3 weeks, orapred (steroids) and nightly 6mp, all in all still quite a wallop to the system but with doxorubicon now behind us we should see a more stable and more energised Scott. Also the injections of blood thinner will continue twice a day until we get the ok from Dr Tebbi.

He has recovered well from the stroke, quite incredibly well it has to be said. We are so pleased and relieved but also nervous that it could happen again. For me the stroke was way scarier than the initial diagnosis of leukemia. With the stroke Scott was lost, he wasnt there, and there can be little worse than your child not knowing who you are, who he is, where he is, the only emotion he could show was terror. Those days when he was like that were simply cruel. However, he recovered, and quickly too, and for that we are all very thankful.

Something wonderful. A couple of days ago we noticed something strange about Scott, his eyes looked different, sort of weird. Well guess what! His eyebrows had started to grow back, he's also getting some fuzz appearing on his head too! Scott is feeling very proud of himself and keeps shaking and tossing his head back as if he were in a Loreal commercial. We are very excited too, even if he does look a bit odd, and keep touching his lovely new stubble. We were told that his hair may come back different than before so Scott is hoping it'll grow in black so he can be a natural Goth! It would be perfect for the Cure show next Spring.

Thats all for now, my fingers hurt.
Thanks for checking in.

Derry and Scott's Parisian Vacation

A few years ago, and under duress, I trusted my little sister to take the boys to France for the day ... in an itsy bitsy Piper plane. Her friend was the pilot and "needed some practice time". LOL. What was I thinking!!! So anyway, off they went and arrived safely. They played in the rain, had a bit of a paddle and stopped by a patisserie for baguettes and such to bring home for tea. Then, if my memory serves me correct, Lorna got a call from her pilot friend to frog march it back to the 'airport'/field pronto as a storm was setting in and he wanted to beat the clouds.

Needless to say the weather got the better of them, and the ride home got a wee bit hairy. The boy's headsets were turned off so they couldnt hear the pilot and my sister (who does kind of know her sky stuff being an air traffic controller) panicking. The instruments were no use and they had to fly home by visual, looking for gaps in clouds. The plane, as you can see in the photo below, isnt much bigger than a go-cart, and was rocking all over the place. Thor was in full glory to be sure. Scott fell asleep and Derry thought it was great fun. (He has a short, hahahah, future in kamikaze maybe?) Somehow they managed to fall in behind a larger aircraft and find a corridor between thunderclouds and by some great miracle their little baked bean can made it home.

Next time they'll be taking the Chunnel!

la baguette..

for some strange reason Scott thought this French car very funny!

The pictures below, wow. The one with the boys running from waves - keep in mind that water was probably about 40-42 degrees - and Scott's wellies were full of it.

I absolutely loved the time I spent on the North Sea coast. Crovie was amazing, and doesn't even have a road. The extinguisher incident is a classic. Pennan was incredible as well. As was our special day on Loch Ness. My trips there rank as some of the best days of my life. If you've never been, you've never seen some of the most amazing landscapes on Earth.

And the looks from Derry and Scott after searching - unsuccessfully - for a TV were also classic, as were my fire-building skills with wet wood and coal.

I can dream of the old days, life was beautiful then..

A day or so ago my sister, Lorna, asked for more photos, so I thought I would post a couple and the memories that went with them. This photo was taken close to our old stomping ground in the North East of Scotland. David had flown over from Florida and we were renting one of the houses in the background of this picture for a long weekend. This photo was taken a day after the shooting incident. We were all asleep, except for Scott as we were to discover (!!), when my little angel happened upon a rather futuristic looking 'gun'. Instead of thinking to himself "damn, Id best go and alert my mother", he decided instead to blast his sleeping brother with it! The 'gun' was loaded with several litres of yellow liquid which stank to high heaven, and once started it couldnt be stopped. Poor Derry woke to find himself covered in this stuff, and Scott in complete shock, yet still aiming more at him. My first knowledge of this was when Scott appeared at my bedside and said, "I dont know what I've done but it was very bad." Then Derry dripped into the room, sort of laughing and sort of crying, "he wouldnt stop shooting me".

Anyway, it turns out the 'gun' was a fire extinguisher and Derry didnt develop anything horrific following the incident although it took a little longer for the mental scars to heal. :)

However, they still havent forgiven us for 'making them stay' in a cottage with NO TV!!! Maybe one day they will admit that our few days in Crovie were some of the best days they have ever had.




















A couple more ...

Around the bay to Gardenstown..

Tomorrow, I'll tell all about their (deathwish) trip to France.

The Chemo Angels

Scott is doing pretty well at the moment, pretty well considering all he's dealt with the last month and this being the "post-chemo week" with all the side effects. So I wanted to post about a couple of special folks (and their families).

There is a fair number of folks that stop by here and post comments on Scott's blog. I'm sure many of you have seen the posts by Scott's two Chemo Angels - Angel Laura and her family, and David and Staci. Those are folks we've technically never "met", but we crossed paths due to the Chemo Angels program.

I encourage all of you that visit here to click on the link above and read about the program. It is purely volunteer, and we can testify first-hand it is a great program. You have to really understand the appreciation a kid has when the stack of mail has something with their name on it. Especially someone in an ordeal such as Scott. Each child registered in the program gets two Chemo Angels, and they receive something weekly (and in our case, it seems even more frequently). It takes a little effort, but it has a value far beyond the effort required.

As we've said many times, both of Scott's Angel families deserve great big Thank You's for what they do. I just thought they, along with the program, deserve their own little shout-out here.

If you need inspiration beyond Scott's ordeal, just visit the nearest pediatric cancer center near you. Just once. It isn't an easy thing to do, but you'll walk away with a new perspective on most anything in life.

And I'd be remiss if I didn't mention September is Childhood Cancer Awareness month. Just Google that term and read. We've all heard of the behemoth organizations geared to breast cancer and towards general research like Lance Armstrong's LIVESTRONG group. Sadly, childhood research never sees the sizable dollars some adult research programs see. Mostly because as a total, the number of kids with cancer is dwarfed by adults with cancer.

But child cancer needs more research. Much more.

Read about a little guy named Jack Brown on his site.

Or read about 5 fathers with children fighting the same disease, and their effort.

Thanks.

Better days ...

I cant wait until the day comes when he can put on his skates and tatty old pads again. I love this picture but it makes me so damn sad.

Doing the platelet dance!

Hi all,
Scott had the clinic this morning but for a cbc only. After Mondays bloodwork it had looked like he might be needing a transfusion but thankfully he is holding steady. His platelets are not as good as I was hoping and it is taking all my willpower and a handful of happy pills to not get my knickers in a twist about it.
His counts were...
anc --> 2380 (excellent but steroid induced)
hgb --> 7.9 (only just okay)
wbc --> 3.4 (fine)
plt --> 154 (no likey)
We will be keeping a close eye on him over the coming days and may need to have him back in the clinic on Monday.
On the whole Scott is doing amazingly well considering what he has been through these last few weeks. He has come from there being 'nobody home' inside his head to being pretty much back to normal in only 2 weeks. "But after all, he's my wonderwall"!! He has been very tired and run down and just totally scunnered with all that life has thrown at him but he doesn't seem to be lacking anything brain wise following his stroke. I have tried to not keep firing questions at him, "what is your name and where do you live", I try to be subtle in my approach, "this show is so gay, what's is called again" (when referring to Full House ofcourse). Scott glares at me and tells me to quit the 'head stuff'. So I guess that a good sign.
I have tried to get him to paint, do puzzles, swim, anything at all, but he says his body hurts (from vincristine) and refuses to budge from infront of the telly. He is still doing the steroid thing and eating like there's no tomorrow, which sounds kind of funny, but really it isnt. Its like he's driven to eat even though he really doesnt want to, he hates his swollen tummy, the way it looks and the way it makes him feel. Now also, with the blood thinner, his belly looks like a dart board, some of the injection sites look black and angry and bruised whilst others are barely noticable. He hates it, and believe me, I hate having to do it.
Anyhow, it is great to be home, we missed our kitties so much (well I did, Scott remembers very little about his hospital stay), its nice to walk on carpet and sleep in my own bed and stress about how horrible our garden is looking, just normal stuff. I hope in a day or so Scotts pains will ease and we'll be able to get out and about a little this weekend. He is hoping to go see the new Mr Bean movie, and with his anc being good then this might be possible.
Before I go I would like to say thank you to everyone who is supporting Scott through his ordeal, to Dr Tebbi and his team, our chemo angels, the Childrens Cancer Centre and ofcourse to all our family and friends. We just couldnt do this without you all. Thank you.

Some Derry News

I know we have this page to keep up with the medical aspects of Scott, and I happily report the steroids are in full swing to the tune of about 10 croissants, two bowl of strawberries and two large fries from Steak n Shake. Scott now passed out on couch with a huge belly, like a good man should be.

But today's good news is on the Derry front. We just got word this evening he's been slotted on a hockey team for the Fall Rec league!! It was great timing, as all he had done today since getting home was slave away on a mountain of homework. He was quite moody, even with getting a trip to Steak n Shake (which he loves). I got the email right as we got home. He'll have practices on Friday evenings, and games on either Saturday or Sunday mornings.

We're very happy for Derry, as he needs something that is "his". He's lost a lot of personal time since Scott was diagnosed, which is just the nature of the beast. This will be a great thing for him, and it has no involvement on school/work nights. One of his friend's, DJ, was slotted on the same team as well. He was very happy about that, and DJ called shortly afterward so they could talk. Derry seemed shocked when Stephanie said the phone was for him. LOL.

Cheers for Derry!

(and for me, as I know officially have a boy playing sports!)

Bleach Poisoning

No, Scott doesn't have any new problems today. However, Derry and I are thinking of renting a hotel room for a couple nights so we don't fall victim to the bleach fumes within the house. I had to go to Costco and get a new 6-gallon pack, as the 3 gallons here just weren't enough to do the job Stephanie deemed necessary.

We got home yesterday and Scott almost immediately wanted to go buy a game at GameStop. He managed to go with me and walk around there and a brief stop at Publix. While I actually wanted to wait on the game a day or two, it was nice to see he could still work the Xbox 360 properly. It is just hard to tell what he can and can't do.

It was interesting this morning, as we asked him a few questions. He says he remembered us taking his temp here (3 weeks ago today), and that it was high enough to require going to the hospital. He has a pretty blank slate between that night and the 2nd scan that showed the clot clear. He told me he thought he was in the hospital about a week and a half. Doesn't remember getting the tube down his nose. Doesn't remember virtually anything about the few days before we knew what was wrong and a few days afterward. Can't recall when certain things sent by certain people showed up.

But he did notice the nightclub next to Border's had changed names, and that the bank on the corner had also changed names (something I hadn't even noticed).

Yes, we're home and damn happy to be home. But we have to be aware of the effects this event caused. We do have to have a brief clinic visit early tomorrow for bloodwork. Crossing our fingers on that one. The shots are still going to be twice daily. It was really weird for Scott to get one at home the first time, and I think it disturbs Stephanie even more here than at the hospital.

When leaving yesterday, Stephanie mentioned to the nurses it was nice to be past the worst part of this "little bump in the road". One of the nurses told her "that was no little bump in the road. That was a very big bump, and it had all of us worried".

Still awaiting an attack of ravens, rabid raccoons or aliens of some sort.

There's no place like home

Just a quickie to let you all know we are home and even though strange things are growing in the fridge and all my plants are dying and the cats are in a mood with us, it feels wonderful.

Thank you so very much for all your support and lovin' these last 3 weeks, it sure helped us get through some very tough times.

Thats all for now, a bottle of clorox is calling my name.

As Skittles Turns

These days it seems as if we're caught in some sort of bad medical drama. When I left earlier, it seems Scott's impression of a bloodied wrestler had been stopped. Just a bit of a speck on the dressing over his access needle. He did actually eat pretty much all of a croissant this evening. Finally got some bread down him.

His blood sugar was back in normal range through the day today, after the TPN was stopped. But it will require monitoring during his steroid pulses.

Scott did have a highlight today - at Stephanie's expense. HE got to give Stephanie a jab in the stomach. Real syringe. Real needle just like his. Her's had saline in it though (Dr. Tebbi, if you're reading this, this is all purely fictional). He cleaned her. Pinch her. Stuck her. Pushed it in. LOL. It was great. Stephanie was a bit worried at both the willingness of Scott to do such, and the happiness and madman like look on his face in the process. Not sure what to make of that.

We also had talks with dietician's, physical therapy and home nursing today. Loads of fun. I can't type what all we talked about, as I am a spaz and seem to have mental blocks today.

They did tell us when we may expect to come home, but with the track record of this stay, I'm not putting it here, as I'm sure it will cause blacks cats to cover the roof of the hospital and deliver another evil bump in the road. Either that, or a circus monkey carrying Ebola will get loose in the ward and bite Scott. Just that kinda luck we've been having.

We did have a nice visit from Anissa (whom has posted comments on here). We met Anissa and her family at the Children's Cancer Center. She has a little daughter, Peyton, whom also has A.L.L. You can read about Peyton on their website. Anissa came with more wrestling for Scott, and even a gift for Derry. Thanks Anissa, you know how little visits from folks suffering the same help.

Also need to thank Susan and Alan, whom have a little daughter just diagnosed at St. Joe's. Seems they are coffee freaks like Stephanie, and tend to go buy large pots of the good stuff at the coffee shops. The "other" Susan (Taylor's mum) keeps bringing food and coffee as well.

Everyone cast into this terrible role of "cancer kid parent" knows you seem to lean on each other. It is only natural, as you see each other all the time at clinic or when you're admitted. Kind of a misery-loves-company situation.

I'll stop blathering now, as I'm not sure I'm making sense. This stay of Scott's has sort of melted our brains, and we weren't exactly the most solid thinkers before.

unbelievable

Scotts port is still bleeding so they are running coagulation tests to see if perhaps the thinner needs reducing a little.
But get this ... a blood sugar test came back SKY HIGH and he is being given insulin. I have been asked about diabetes in our family, which we have plenty of, and was told that Scott will almost definately go the same way, but not for many years hopefully.
The high blood sugar is caused by TPN and steroids but for most kids there wouldnt be such a reaction, only for those predisposed, I think thats what they said anyway.
Its early and we wont be going anywhere today and Scott and me are fed up already.
Im going to watch the news and see if a meteor is heading towards St Josephs Childrens Hospital, I suspect there is.

Scott is doing very well today, much more focused and even his wicked sense of humour is coming back. He had a visit from physical and occupational therapy and they seemed quite pleased with his progress and will be working further with him in the weeks to come. When they arrived I started to help Scott get out of bed and put some socks on but this didnt go down well so I skulked off and made coffee. They were nice girls and Scott seemed at ease with them. They also gave us suggestions on ways to improve his walking, coordination etc. He will have to do some exercises at home, use his stationary bike and get into the pool as much as possible. But on the whole everything looks pretty good. He will also see a speech therapist soon and see what, if anything, needs to be done to help with this.
It has only been a week since the clot was found and I think it is fair to say that Scott has bounced back better than any of us could have imagined. Those days last week when Scott's mind seemed to have left the building were without a doubt the scariest days of my life and I know that David and Derry felt the same. I couldnt even begin to describe our terror and the same can be said for how relieved and happy we now feel to have our little Scotty back.
I am sure we still have some way to go but as far as I can tell with a little more time and with therapy he will be good as new before too much longer.
YAY!!!!! :)
More good news ..... Scott has just had his very last Doxorubicon!! I did a little happy dance around the room, he called me a 'moron', all good stuff. His Vincristine is going in now followed by a shot of steroids. However his port is gushing blood and wont stop due to the blood thinners. His chest is all wrapped up and he looks like he's suffered a shrapnel wound. I was told it will probably keep bleeding until he is de-accessed, and that, we hope, will be tomorrow. Yup they may let us go tomorrow. He is still very reluctant to eat but has had a few Pringles and a Popsicle so we are making progress.
I have lots of thank you's but my mind is a bit mushy right now so I apologise if I forget someone.
Little Sydney is a 15 month old girl with tumours on both of her kidneys, she is undergoing chemo and will face surgery soon. Yesterday she sent Scott a beautiful decoration of fruit, I guess she was trying to get Scott to eat. A very unexpected surprise and very much appreciated and enjoyed. Thank you Sydney.
Thank you to Katie and MaryLynn and Rosie for coming to visit and for trying to cheer me up. Im sorry that this was such a mammoth task for you all. I havent been good company of late thats for sure.
Thank you to Carolyn, Grandmomma and Papa and Sandie for the wrestling dvds. Thank you Mum for the beautiful flowers. Thank you to our chemo angels for their constant support and to Laura for buying Scott a star. We thought that to be such a touching and thoughtful gift although the star will probably be named after an ice hockey player. LOL. Thank you to Sarah for the basket of hockey cookies. Thank you to Sandy from the Childrens Dream Fund for something I cannot tell you about right no in case Scott reads this. Thank you to Susan and Taylor, without whom I would have starved to death and for being there for us constantly.
Thank you to Dr Tebbi and his amazing crew of doctors and nurses who have suffered my worrying and nagging and constant questions. And thank you to Dawn, the manager of this ward, for her kindness and for understanding.
I had to take a break from writing this but am back now. Scott has had a lot of bleeding from his port which would not clot due to the thinners, it was looking very bad and freaked him out a bit. He is all cleaned up now and a special powder has been put on it which should aid the clotting, I certainly hope so, it wasnt pretty.
Okay, well thats it for now, my fingers are tired and I'd best go and keep an eye on Scotts wound.
Goodnight.

Counts up

Got some news from docs this morning. Scott's counts have bounced back up to a level where they can start his chemo. That is good news. Get this last round of Doxorubicin out of the way.

We've also been told mastoiditis is not a worry. Review of both MRI's show the mastoid the same size. Someone may have jumped the gun a bit on raising that as a concern.

Scott had several bouts of puking this morning. One when Doc Tebbi came in the room. Nothing like showing your doctor how fed up with the hospital you are then tossing your cookies when he walks in the door.

He does have some nasal drip, which may be the source of puking in the mornings. That coupled with no food and a stomach full of acid seems logical.

We'll update more when I see Scott and Stephanie. Not really sure how they are both doing in a general sense. I do know Stephanie is exhausted. Doc Tebbi is talking about maybe going home tomorrow or at least waiting for Monday. He tends to lean conservative, so I wouldn't bet on Scott getting released tomorrow.

Thinned

Good news officially back from Scott's MRI/MRV yesterday. The clot has been thinned and appears non-existant now. That is a great relieft that it was caught timely and the treatment used is working as well as anyone could expect.

However, still lots of worry as Scott still will not eat. He must eat in order to get released, and he knows this. I believe he's hesitant to eat because he afraid it will just bring on vomiting, which he's been doing each morning for the last several days. Trying to convince him that getting food in his stomach would stop the overload of acid and stop the nausea isn't easy, as realisticly he'll likely get sick the first time he does eat solid food.

Quite a mess indeed. However, the okay has been given to start his chemo 3-week cycle when his ANC reaches an acceptable level - which it isn't right now.

But it does appear we are getting close to having the clot situation solved, but not sure. They have also said the scan showed something called "mastoiditis", which seems to be inflammation of the mastoid bone. So just something new to toss in the mix.

That's about all the info we have on mastoiditis.

As Stephanie said - "this all just sucks".

Just wanted to share some good news ... no change on the cat scan, nothing funky to be seen, no brain damage, swelling or bleeding!!!! Hopefully tomorrow the MRI and MRV will be repeated also and we will see a reduced clot.
Earlier on today I did Scotts injection of blood thinner. First Nurse Danni had me practice on her stomach with a saline needle which I managed to do fine, then she talked me through the process with Scott, I was a nervous wreck but pretended to be brave and confident, and it worked, I did it!!! Scott was amazing and didnt move a muscle, I am so proud of him. Danni has been my rock these last few days, she has treated Scott like one of her own, and me too. She has shown us so much love and her care of Scott has gone above and beyond what was necessary. I always wanted to be a midwife (or Indiana Jones) but now maybe when the kids are off doing their own thing, I think I want to be just like Danni.
Its getting late and I guess I should sign off and go to sleep but Susan came bearing frappuccino's and goodies and Im bouncing off the walls again. Thank you Susan! :) Also the helicopter pilot who landed recently outside my window seems to have wandered off and left the engine running.
Well heres hoping for good scans tomorrow and another step towards a healthy Scott.

Hi all and thank you for your messages of support.
Scott is doing okay, his memories seem to be coming back, he now knows where he is and who he is and remembers his family and pets. He is walking well and has just brushed his teeth, quite an accomplishment after a stroke. He seems to have moments of complete clarity when his sense of humour shines through and all seems well, but he also has very long periods where he just appears to be in a deep fog.
He is extremely depressed and withdrawn and it is hard for the doctors now to determine how much is neurological and how much psychological, but all agree going home will probably be the best medicine.
His fevers have gone and his temp is back to normal, we are not even seeing low grade fever anymore. However, he is still not eating or drinking, only a sip of water once in a while. He has been sick twice today, which really sucks when there is no food in your belly, and this is slightly troubling the doctors, so a CAT scan will be done today to check for bleeding in the brain. Both Dr. Tebbi (our lovely oncology doctor) and Dr. Fernandez (brain dude) dont really expect to see anything but need to be absolutely sure the sickness isnt being caused by a bleed or swelling. Nothing showed last week but things can change. Tomorrow he will have an MRI and MRV to see what is happening with the thrombosis.
Depending on these results he may start chemo again this week which none of us are looking forward to but this will be his last high dose chemo and we can then move forward into maintenance.

We have certainly seen progress since this was discovered but he has a LONG way to go before I will be able to breathe a sigh of relief and try to put this down to a bump in our road.

Kid on Kid

Never underestimate the value of a kid to a kid. Scott's buddy Brandon came by today. When he came in, it was like some sort of interest sparked in Scott. Up to that point, Scott had been pretty much the same as yesterday, and hadn't even been out of bed walking. Brandon came in, thinking nothing of Scott looking weak in the bed or the pole an IV hooked up. After a few minutes, we just left the room with those two and Derry in there watching wrestling. Shortly afterward, Derry comes out and says "Scott's chewing gum". Brandon had offered him some, with none of the 'Scott you need to do things so they will release you' conditions. Scott just plopped it in his mouth and started happily smacking away. I'd bet a lot of money he'd have shunned gum if Stephanie or I had offered it.

We've no idea what they talked about. Probably wouldn't really understand it if we did. That doesn't matter. He had a good 90 minutes just basically being a kid watching the tube with his friend. Brandon is also just a kid, but I really hope he understands he made a good impact today. We owe him and his parents a big thanks for giving their afternoon for Scott.

Scott seemed a bit more loose today after Brandon's visit. He has now remembered how to do his "Slavic" face (learned from Richy Richard on "Bottom" for you Brits), and was laughing afterwards. He also requested the Wrestlemania 23 dvd to be brought in tomorrow (thank you Sara). I think he wants to see McMahon get shaved.

Stephanie has been able to get him to drink a small amount. He ate a couple more gummies, and his nurse got him to use the magic mouthwash today.

He's listening and understanding. He even told Doc O this morning that he had been seeing things a couple days ago. That may explain the fear he was showing for anyone touching him or even coming at him with a thermometer. He told me he doesn't remember the scans from last Tuesday night.

Now on to the next couple of days, which will have another scan being done on Tuesday or Wednesday. I believe Stephanie and I are going to have to learn how to do the Lovimax shots as well.

Prior to leaving for the hospital this morning Stephanie told me Scott was talking more. Terms like "more" or relative, and even though she told me some of things he was doing, I still couldn't wait to see for myself.

I don't know if I've ever felt as good as I did today when Scott told me my name. It was the best feeling ever. He also knew who Derry was, and how old he and his brother are. Things you take for granted and think meaningless really aren't.

Then later in the day, we're sitting watching more wrestling. A match finished and I looked over at Scott and he turned his head my way and gave me that "Scott smile". Not a half-hearted one. The smile Scott gets when he's happy. It came because John Cena had just bashed Edge through two tables off the top of a 12-foot ladder. Not the best way to spark a smile from the little guy, but anything that can produce that smile right now is okay.

He's still not eating, but he'd did at least take a few sips of water today. Small steps, but very important steps. One of the neurologists stopped by, and his message was progress this soon was a very positive sign. He told us to keep prodding him, but not to the point where he gets fed up with too many questions. He also spoke to us a bit more about the specific area and things that happened.

He walked a bit and we took him for a little journey downstairs and outside for a brief moment. Dr. O was on today, and she was very pleased with Scott talking with her when she came in, as were all the nurses. The whole group has had genuine concern for Scott (as they do for all the kids) because they also saw what a change it made in him. They are all happy to see his progress. We're ecstatic to see it.

These things may sound like insignificant items, but from our perspective Scott has changed significantly for the better in the last couple of days. Just taking it a day at a time.

All in all a good day. Georgia pounding Oklahoma State made for a nice finish.