Scott & Sunny

Scott & Sunny

Sunday, April 27, 2008

It’s been a good weekend. I hesitated writing those words, I guess I’m just a weirdo, but whenever I write, or even think, things are going well, I feel like I am jinxing us. Strange huh? We walk such a precarious path but this weekend our path was lined with beautiful flowers and butterflies (I know ... how gay), but it’s worrying, will the path hear me and decide to throw down a rockslide just for the sheer hell of it? Am I losing my mind? LOL.

So yeah, as I was saying (quietly so the path doesn’t hear), good weekend.

Yesterday we had a day out!!!!! A normal, family day out. David had to work for a while in the morning, but that was good, gave me a chance to clean the house. Boy do I HATE coming home to an untidy house! So the house was clean and tidy, as were we (all of us at the same time) and off we went to Busch Gardens.

I was very concerned, and quite sure that, we would get there, Scott would have a meltdown, and we’d be on our way home again, scolding ourselves for being so silly as to even consider the idea of a ‘day out’. But nope, all went . Scott didn’t get sick; he didn’t even get grumpy or freaked out by the crowds. Derry didn’t moan about needing to get home to World of Warcraft. David was in rollercoaster heaven and only moaned once when I tried to steer everyone into a shop. I rode my very first water ride (I hate rides) because, as everyone kept telling me, if Scott can go through all this shit, I can damn sure ride a scary ride. So I did. And it was okay. In fact it was kind of fun in a cold and dampish kind of way.

So anyway we did Busch Gardens. David and Scott rode heaps of rollercoaster’s and Scott didn’t even feel in the least bit sick which is bloody amazing if you ask me! Derry is like me and hates rollercoaster’s. We just don’t understand it. I think we both would rather walk across hot coals than go through the hell of risking life and limb on a pile of rusty scaffolding. We looked at the animals and ate lots of junk; we basked in the sunshine and had a great day. We did see something very cool too. Whilst watching the tigers in the new section of the park – Jungala – we saw, twice, a juvenile Bengal charge the glass and aim to attack, and presumably kill, a couple of very young toddlers. It was awesome, even the babies seemed to think so. The parents thought it hilarious too. This tiger wasn’t playing around. First it stared at the baby, never taking its eyes off for a second, its tail was waving around, hackles up doing that one-sided lip snarl thing that they do, then it pounced at the glass, it wanted to eat a baby! There was a huge crowd and everyone was like “wow, very cool". I posted a photo, not one of the best, but I didnt want to put the babies faces on the internet. I have to say though, for some reason, be it the glass or perspective, that tiger doesnt look nearly as big in the photo as it did in real life.

Today we had another good day. Most Sundays we end up mad at ourselves for sitting around doing nothing but today we did heaps of gardening (yard work), inspired by, and continuing on from the work my Mum started whilst she was here. Thankfully we didnt come across any snakes - Scott and I saw a dead Copperhead the other day - David said they can be very nasty indeed. Derry and Scott played NICELY, I got a palm needle embedded in my foot which David surgically removed with toe nail clippers and Derry completed his school project – one day ahead of time!!! Incredible.

His project was to write fifteen poems, not something he is very passionate about it has to be said. However once I told him that there are no rules in literature and he could write about whatever he liked he loosened up a bit and now has a stack of poems and pictures to hand in, on computers and gaming! Oh yes, we have poems on World of Warcraft (ofcourse), Portal and the death of the Companion Cube, the beauty which is the Xbox controller, the anguish of the server being down, Gears of War and other such delights.

Well I getting tired so I think I’ll hit ‘post’ and get to bed. Hope you like the ‘demise of the Companion Cube’; just a taste of what it’s like living with 3 geeks. G’night.

Thursday, April 24, 2008

Today's bloodwork looked very good (huge sigh of relief!). Scott's anc was 1990 and platelets 273. Biliruben high again but not at the scary levels of past weeks.

I have been so worried about him in the last few days. He has been feeling sicker than normal and he's also been very irritable and restless. Its hard I suppose for a non-cancer mum to understand, but when you are going through this you find yourself constantly looking for warning signs, to the point where every single little bruise must be accounted for, or complete terror sets in. This applies to siblings also. Poor Derry gets it as well! I guess paranoia and hypochondria-by-proxy (??) are just par for the course.

Scott also had the honour of being followed around by a camera man today. It is for something Pat Padraja is doing (damn when does Pat ever slow down!) to raise awareness (I think) and seeing as Pat was hanging out with Scott, then Scott got the paparazzi treatment also.

Well thats it, I'll leave you with a photo of Scott at the park last night. We've started heading over there after tea (dinner) for a bit and loitering with the 'suspicious' people. Yeah baby, thats right, we so wild and crazy! Living life in the fast lane .. thats us!

Monday, April 21, 2008

Okay, time for a bit on a Scotty update. It’s been a while.

Well he finally got over last weeks pain and fed-up-ness. What a week. It seems like each new dose of vincristine gets harder and harder on him. The doc did say that this happens with some children while for others it gets easier. Trust us to pick the tough route. Thankfully we didn’t get a call about his spinal fluid, which I would guess by now means there was nothing funky found. Dr O. said it looked clean when it was removed, often if leukemia is present the spinal fluid looks cloudy or yellow. When he has a spinal not only do they remove fluid they also inject 2 different chemo drugs. This led to him being very sore for about a week after.

Remember, at diagnosis his spine was clear of leukemia. For most children it is, but that doesn’t mean it cant relapse in that area – or the marrow – or his little boy bits!

Anyhow, back to now.

Yesterday he was looking really good. It was wonderful to see him smiling and with a little of the old Scott peeking through. Sadly it didn’t last long and this morning he woke up feeing horrible. He has had tummy ache and head ache all day and nothing is shifting it. Obviously that has me worried about what is going on. His blood work last week looked okay but with this damn disease things can change very quickly.

We did manage to get a fair bit of school work done though. It kind of took his mind off all his aches and pains. David is doing Maths with him as it’s just not my cup of tea at all. I can add up and take away and at no point in my life have ever needed to calculate what ‘x’ is. Completely overrated school subject in my opinion. And damn, I tell you, American schools just seem to drill it above all else. When I was at Aboyne Acadamy we did about 4 hours of Maths a week and so had time left over for an abundance of more interesting work. Stuff like metal work, swimming, SE (sex and drugs education), RE (religious education), French and drama. Och well, I’d best get off my soap box.

However, Scott is doing great in all his subjects. He is currently studying Mesopotamia and King Hammurabi – fascinating! In Language Arts we are doing Greek and modern day heroes and the study of the monomyth – right up my street – LOL. Hopefully science will come on line any day now and once he is handling all 4 subjects we will try and add something else. I am so impressed with Florida Virtual School, sounds like a cliché, but it does seem to making learning ‘fun’.

I know I haven’t said anything yet about my Mums visit. Whilst she was here Scott wasn’t up to much at all. We did manage to see a movie, go putting a few times and eat lots of icecream and pizza but for the most part we just hung out here and tried to keep Scott comfortable and amused. She planted some beautiful new flowers in the garden and did all my ironing so that was nice. :) Hopefully the next time she visits Scott will be feeling a little happier.

Well must go now, my fingers hurt. I’ll leave you with a few random photos ..

Hands up who loves Bon Jovi

If you dont, go stand in the corner until you're sorry!

For my Mum who truly 'lives her life' and is having knee surgery today and for Eric who is recovering from a hip replacement.

For all the little ones fighting cancer. Especially for them.

And for Scott, may he come to realise that his wish trip should be to meet, and sing this song with, the lovely Jon Bon Jovi!!! And yes, he is actually considering it! EEEEEEEEEEEEEE! :)

Friday, April 18, 2008

Rest in Peace Phantom Dan

Yesterday I learned that an old friend of mine passed away.

I became friends with Danny a few years back and if it hadn’t been for him I would never have met David and so for that reason alone he has a place in my heart. But before that we hung out for a little while. I had some mind blowing days (as any E Street Band fan could appreciate I’m sure) and along the way he showed me that there is life outside of a small Scottish village.

Later he met David, in a backstage ‘tent’ at a Darien Lake fairground in Buffalo, he gave me the nod of approval and that was the last time I saw him.

I believe he did read this blog from time to time. Danny could relate. He had cancer also.

I am so sad he is gone. He'll be missed by so many. Like another friend said yesterday, “the heavenly band must have needed a kick-ass organ player”. I like that. :)

This bootleg is kind of special for me. My sister too. And her crazy x-boyfriend. WHAT A NIGHT we had!!

“Come on up for the Rising”…

Yesterday was a tough day. Many times Stephanie has written about little Matthew Gliddon. Matthew had relapsed late last year and a lot of complications followed. He was on a plan to prep for a bone marrow transplant, but then began having infection problems. Things got more complicated. Too complicated to go into here.

Matthew lost his fight Wednesday while at home with his parents.

There just are no other words.

Rest in peace little Matthew.

Thursday, April 17, 2008

Clinic Day

Today obviously was clinic day. Scott's counts were good and he got methotrexate through his port. It was a very busy, chaotic, noisy day in the clinic. Scott was chirpy and upbeat this morning, but was fed up and silent by the end of treatment. Part of the reason was Doc Rossbach wouldn't write another script for Tylenol/Codeine just yet. Scott has went through the last batch quickly with all the Vincristine pain. We're going to try a couple of other "lighter" things. But needless to say, Scott was not happy about the prospect of his bottle of magic elixir running dry.

I hope he cheers up this afternoon, as he was in a great mood and mindset this morning. Just seems each time he starts a good day, something comes along and smashes it.

He is progressing in his "virtual school" classes. The math class just got started this past week, so now I'm involved (as Stephanie just does not like "numbers"). We've been rather well pleased with the program, and Scott has taken to it with a positive outlook overall. That's good, as we have to get his brain churning on a regular basis.

Christine (Stephanie's mum) made it back to the Isle of Wight all in one piece. However, she's do for a bit of a knee operation on Monday, so we hope that all goes well. Eric (Christine's husband, Stephanie's stepdad) is just a couple months past having a hip replacement operation and is progressing well. We owe both of them a huge THANK YOU for their generosity. Eric lost his first wife to cancer, and knows very well the type of things we face through this ordeal. Again, family does something amazing.

Thursday, April 10, 2008

It's been a week

It's been a week since we've posted. Largely due to being off work, out of school and Stephanie's mum having arrived last Thursday. She arrived just a day before I headed off for our annual golf trip (which got shelved last year).

As I said, Stephanie's mum arrived a week ago. They've been out and about while I was away with the "guys". Stephanie will have to fill you in on everything they've been up to in the last week.

I got away to Gulf Shores for 4 days with my buddies. It was the first time I'd been away from home or from Scott for more than one night, and that was a bit awkward. At times I'd be playing golf and out of the blue just think to myself "why the hell am I here?". I have a kid with cancer, and one feels very guilty doing something as normal as playing some golf, especially being away from him. So many things go wrong out of the blue with these children, one never knows when the call/email may come that sends you rushing back as quick as possible. I must say, it's a very uncomfortable feeling when you think "wow, if something happens, I have to take off and drive for 8 hours just to get there". Makes me wish our golf trip was close by. Maybe we'll do that next year. But I did have a good time, and do feel a little less like I may have a heart attack at any given moment. I'm just glad I have friends (4 of the 8 of us started 1st grade together) that I can do such a trip with, especially now. They're a group of guys which won't allow me to wallow in despair, else they'll smack me around a bit. We all know what each other has experienced through most of life, and we all know how to reel back in each other's sanity a bit.

On to was clinic day, and Scott's counts came back good so all chemo was a "go". It was also spinal tap day. These treatments only happen a few times in his protocol, and he's knocked out for the process. I don't think he ever believed us about how quickly he goes to sleep, so he wanted that part of the procedure filmed. I've posted it at the bottom of this post. If you find it weird that we see humor in the process, well, having a kid with such a disease makes one a bit warped and we were a bit that way at the outset. He's feeling okay now, especially after eating pizza and taking some Tylenol/Codeine for his back. We're just awaiting the joy that is "steroid effect/vincristine pain" days. They can be a bundle of fun. We'll see how it goes, as we are trying some type of additive this time round. Glutamic acid I believe, which has helped some kids with vincristine pain. It's not another drug, just an additive found at any nutritional store. The docs said give it a go, so we'll see.

So without further ado, here's Scott being zonked out to have a large needle shoved in his spine.

Thursday, April 3, 2008

For the first time in over 14 months Thursday has rolled around but Scotty doesn’t have to go for chemo!

Instead he had clinic yesterday and thankfully his blood work came back looking good. Another high anc (still low for a healthy person mind you) which is obviously better than a neutropenic/very low anc but will likely mean increased chemo next week. They will continue tweaking with the chemo until regular low (ish) counts are seen. If cells are allowed to flourish in the blood this also means leukemic cells may come back also. Its a vey fine balancing act.

Scott also had his breathing treatment yesterday which went very well but made him feel ill later in the day. The poor kid had a complete meltdown last night, I guess every now and then the emotional crap really takes its toll and just has to come out. I’m still holding on the anti-depressants, I’d rather deal with the issues and get through them every day rather than give him another pill. But we’ll see, the mental aspect of this is really starting to rear its ugly head.

David is also still feeling pretty darn bad and now has a weird and painful side effect from the antibiotics he had been taking. So the two of them last night, both thoroughly miserable, were not a pretty sight.

Anyhow, today should be a better day.

The reason for switching days is because Scott was asked by the Children’s Cancer Centre to take part in the filming of a commercial for a new section of the park at Busch Gardens. It is called Jungala and one of the main attractions is a very cool zip line. So Scott got up early this morning and went with David to try out the new ride and take part in the filming. Should be a great day and I can’t wait to hear all about it.

I am staying home and cleaning. Well at least I’m supposed to be; instead I’m cruising the internet and updating the blog. Maybe I’ll get out my mop and bucket after the next cup of coffee. I’m gonna have to – MY MUM IS COMING!! Aaaaaarghhh!! Panic! Panic! Panic!

She is probably over Ireland right now and heading to Philadelphia. Then she has a three hour wait until her flight to Tampa. We’re all really excited, having Nana around is wonderful, she does so much to help and does all sorts of cool stuff with the boys. I know she will put me to shame and actually fly Scotts kite with him rather than let it sit in the corner of the room, never built and never flown. And on Saturday she will see Derry play hockey and will probably embarrass the hell out of him, but I guess that’s what Nana’s are supposed to do.

She also has with her my Dad’s claddagh ring he always wore. Dad died without a penny (and lots of bills) to his name which the more I think about the more I like. He lived for the day and enjoyed it. He wasnt really your conventional sort of Dad, more of a wild rover and free spirit. All he left were personal items and I claimed his claddagh. Its going to be kind of weird to see it again.

EDIT: Well, so much for a fun day at Busch Gardens. Poor Scott took a fall from a rope climbey thing and came home after just a couple of hours quite hysterical and claiming how much the whole wide world just hates him. He has a big angry bruise on his back and another on his arm. He's calmed down a bit now, after a shot of codeine, but not a happy chappy thats for sure. :(