Am I childish or are these hacked road signs really, really funny?

Replies to all my lovely messages:
Yes Mum it sucks looking at old photos and I hardly ever do. Derry has barely changed since he was a baby but Scott has taken a beating from this dreadful disease. Maybe this summer will be kind to us and Scott will get his groove back. He still dreams of being an FBI profiler (or if that doesn’t work out, a stripper, and no, I am not making that up!!!!!), so he has about six years to get fit, get educated and put this nonsense behind him.
Sherry, like I said above I hardly ever look at old photos. How you find the strength to do so amazes me. But everything you do amazes me. Scott is bedazzled by you too, especially since he learned you have a golf cart. :)
Please support Sherry’s wonderful charity if you can …
http://www.givinghopethroughfaith.org/
or buy her book. For those in the UK, I will gladly post it.
Sandie my sunshine, my bad influence, unless you have deteriorated dramatically in the last few years then I think the “old crone in the mirror” is simply a figment designed to make me feel less old and saggy. But that’s okay, you may continue feeding my schadenfraude troll – he likes it! And as for you being the kind of girl my folks warned me about – LOL – yup you’re probably right. If it werent for you and your type I'd be a non-smoking univeristy professor by now. And just for the record, if I do end up doing a “grizzly man” in years to come (after our date at the dumpster); my folks can come looking to YOU for answers! Let me know when you get Rock Band 2 on the PS3 – I’ll whoop your arse on Aqualung – yes I really can do it, 94% on expert!!! I rock.
Carolyn, oh dear … I am so paranoid as to who is looking into our fish bowl and when you say "so many people come here on Thursdays for updates" it gives me the heebie-jeebies. It is hard writing this blog, trying to take into consideration who is reading and tip-toeing around my words so as not to offend anyone. I try to keep this journal fairly limited to Scott and his trials and tribulations but needless to say, so much other ‘stuff’ gets thrown into the mix too – most often written when I am at the depths of despair or half asleep. And for us to be called 'inspirational' kind of makes me chuckle. There are, sadly, a great many blogs and carepages out there devoted to sick children, and my goodness, 99% of those families seem to handle it all WAY better than we do. We're either running around like headless chickens in a permanent state of OMGishness or mute and shocked, still stunned after 2 long years. Anyhow, when push comes to shove, I'd sure rather have people that come here and give a damn than be all alone and talking to myself.
Angel Laura, you think I’m funny?? Wow, I’ve been called a lot of things in my life (stubborn and opinionated most often) but funny isn’t usually among them. I know I am fiercely sarcastic (not necessarily funny) and have a very dry sense of humor. I doubt either come across when I write updates as, like I said to Carolyn, I’m either in a foul mood or half asleep. I keep thinking about starting another blog and REALLY letting rip (oooh I get so darn mad at the world, today I’m mad at the lady who gave birth to 8 children a few days ago, Ted Haggard and the UK Prime Minister) yet I am not sure I’m tough enough to handle the death threats that would go with the territory. And Angel Laura, you are absolutely not a 'small part of our lives', you are one of the best parts of our lives and its high time I told you that more often. Damn, thats a bit sappy isnt it. :)
NANA!!! I lured you out. Yay for me and yay for you for figuring out how to reply. Please do so more often as I would love to get your advice and hear your astute observations. I hope that you are feeling good, your leg is healing, and after seeing the news, I hope that you are staying warm. Oh and please consider adopting Sandie. You have so many grandchildren as it is so surely another one – and a witty and uber- brainy Italian at that – won’t be a problem. She even makes homemade Christmas cards!!
Aunty Dawn, isn’t it time you had a blog or even set up a Taylor group blog?? You do those lovely corny Christmas newsletters so well and since the family has spread (ran away) to every corner of the globe it might be something to do on a cold and rainy English evening?! As for our gossip, well I think David came close to putting me on the first flight back to Gatwick on Superbowl Sunday after my rant against American football. I’m thinking of getting ‘When In Rome …” tattooed to my forehead but even then I just know I wont be able to stop mouthing off. But you gotta admit, it sure does look like rugby for pansies.
Mrs. Tinsley, thank you for your reply and for checking in on Scott. We did intend coming to the FLVS event on Saturday. I had planned on taking Scott for a much-needed haircut and then coming to Barnes and Noble to meet with you and the other teachers. However, and without getting into too many gory details, his unreliable tummy let rip and leaving the house was no longer an option. Scott’s chemo side-effects just keeping get worse and worse. I am trying to stay positive about them all disappearing into thin air once he finishes treatment but I am sadly learning of many children who are long off-treatment and still suffering from these effects.

I'll leave you with this cool fossil that I was just reading about (not enough pictures though), an early whale with legs and a baby about to be born...
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0004366

Thursday came again and so did another vial of chemo. Scott’s counts were not so great with the hemoglobin and platelets falling from last week. It seems that as time ticks by his anc doesn’t rise as it used to following steroids. I was told that this is probably due to the bone marrow being tired and sluggish after taking a beating for two straight years. A good response to prednisone (the steroid used for most t-cell patients) is an early indicator as to whether treatment will be successful or not. Well, hopefully now that we are nearing the end this is not such an issue anymore. Only time will tell I suppose.

Sadly clinic was very busy this afternoon. Thursday afternoons are usually very quiet, sometimes Scott is the only patient, but not today. There were no familiar faces, so Im guessing these kids were newly diagnosed. Certainly one kid was, I could tell by the look of horror on his parents faces. Another child was being admitted to the 8th floor. This is where Scott spent the night prior to his diagnosis being confirmed by a bone marrow autopsy. The nurses called it a “dirty” floor as it is where children with contagious diseases are treated. Obviously this is not the place for a child with cancer and a low immune system. I guess the rest of the hospital must have been full. It seems that pediatric cancer is everywhere and is spiraling. Maybe it is only my awareness, or my paranoia.

Thanks for checking in and thank you to all of you who take the time to leave a little feedback. I hate having to keep this blog, obviously because of its content, but also because I feel like you're all in my space. I am not a social creature by any stretch of the imagination (unlike David who runs around, tail-a-wagging and loves everyone) so spewing forth, into cyber space, little tit bits of our lives makes me most uneasy. Obviously all the really good gossip, all the smut, the tears and the arguments I never mention, and anything mildy amusing or interesting which does become chronicled for all eternity is wildy exaggerated - but that goes without saying Im sure. LOL. But anyway, enough waffle. As I was saying ... thank you for checking in and for leaving messages. Without the messages it would be a lonely place and I certainly would have stopped running my mouth off long, long ago. Ahahhaha, so now you know how to shut me up, once and for all.

My mum keeps reminding me that my almost 90 year old Nana reads this blog every Sunday. I know this is her way of saying, "you'd better damn well stop with all that bloody swearing young lady, your Nana's listening". Mind you, Nana is Navy through and through and could probably pwn me in a swearing contest any day!! Scott's teachers have started keeping up-to-date with the blog too, which makes me sweat a bit and double check my spelling and grammar. Now I see that my curly haired and freckled little cousin is also following Scott's story and all I can think about is spinning on the waltzers with him in Helensburgh in the mid-eighties singing 'Young at Heart' and looking mighty cool. Damn I miss the eighties, and feeling completely invincible. Come to think of it I was invincible, and dazzlingly spectacular, especially in my ra-ra skirt and stripey legwarmers. I am almost 40 now, with wrinkles and folds and creaks. Shit.

Gawd, I do go on dont I? I shall zip the cake hole now and get to bed. Oh and I want to see lots of messages in the morning, especially from YOU, my dear Nana. :)

5 years ago we were galloping around Scotland, celebrating David's birthday (which is tomorrow), trying to keep him from freezing to death whilst at the same time attempting to toughen him up (he hated my "air-conditioning system" which led to him waking up with snow on his face!), car-skating down the Lecht in a blizzard and definately NOT thinking about bone marrow and platelets.

Happy Birthday my bonny lad, my Sunshine!

Two Years

I’ve not been posting many of the entries here on the blog lately. Stephanie has been handling the updates. No specific reason why, it just happens that way I guess. But here we find ourselves two years since we entered this nightmare. It is staggering to think back at the things that have happened with Scott.

There is nothing glamorous about all he has been through. No revelations we’ve experienced because of it. Mostly, we’ve seen horrors which are unimaginable. It is not a life experience anyone wants. We have no choice; it is just what happened to Scott and our family. You just deal in whatever manner you can muster.

Having a child with cancer is exhaustive mentally, physically, emotionally and financially. It has changed us all in the last two years. I can’t explain all of the changes, and likely don’t even realize most of them. Things are just different.

It seems most any conversation we have with anyone contains questions about how Scott is doing. One can almost guarantee some level of surprise or shock from the other party when you try to explain “yes, he’s still on chemo”, and the basics of a treatment protocol. At diagnosis, it was shocking and hard for us to even comprehend. It still is that way, but the explanations get tiring simply because all your energy is drained.

If all goes well and Scott has no more delays, his protocol will end in about 14 weeks from now. And that may be the scariest mark in the entire ordeal. Chemo is horrible. The side effects are horrible. But it is chemo which has been the security blanket. Scott had blasts at diagnosis. Chemo killed them. Chemo administered relentlessly pounds away at any blasts which may be trying to hang out in the nooks and crannies of the body. At this point, chemo is the security blanket – you know it kills the bad guy. I suppose a good analogy would be to have walked in a war-torn village in Iraq for a couple of years with full body armor, then one day waking up and having someone tell you “no more body armor”.

Don’t get me wrong – I want Scott’s treatment done as much as he and Stephanie do. I’m just trying to explain the impact all this has on the psyche. It is easy for folks who have never had a child endure this to say all the upbeat motivational things. The fact is - this will stay with us forever. Scott has no choice. He’ll always have regular medical tests others folks can ignore until their 40’s. He’ll never be able to ditch the memories of his treatment. For that I get as angry as humanly possible.

I don’t mean to be a downer, but once this nightmare enters your life, it doesn’t just walk away. It sets up shop for good and grinds on you.

Like I said, we’re two years on now. It’s a marker of sorts, but mostly just a marker in time.

I’m beginning to feel like the little boy who cried wolf. But as long as the wolf doesn’t ever rear its ugly head again then that’s alright with me.
It’s been a nerve-wracking week. Unclassified cells in the peripheral blood can signal relapse and having 8% of cells be unrecognizable certainly gives rise to the heebie-jeebies! Not only did we have crappy blood to worry about, but Scott has been showing no interest in food these last few days and that was the first sign when he was originally diagnosed. He’s also stopped playing on his PS3 and if that’s not spooky then I don’t know what is.
Thankfully – and that’s a huge understatement – his counts today showed no sign of anything sinister. His platelets took a nose-dive, which explains the splattering of bruises he currently has, but the white cells and hemoglobin looked healthy and his anc had recovered. I was also pleased to see the lymphocytes dip. Too many lymphs can also be a red flag. And best of all, not a single, measly unclassified or atypical lymph.
Damn Im so chuffed.
So, today marks 4 and also happens to be 2 years since we first took him to the doctor as he had stopped eating. Just as we were heading out of the door to get to the appointment I noticed the nodes in his neck were swollen, I know this is generally harmless, yet I knew that in Scott’s case it wasn’t. I have never wrote about his diagnosis – its kind of freaky – yet somehow Scott knew, the cats definitely knew, and on seeing those nodes I was also getting a bad, sinking feeling, that it was cancer.
The doctor didn’t seem concerned at all and put it all down to a bug. Two days later Scott threw up and suffered a petechial hemorrhage in his face. An hour later the doctor at a walk-in clinic told me, with tears in her eyes, that she was 99% certain it was leukemia.
However, tonight we party with a big, fat Publix cake and continue with out countdown.
YAY.

Remember the golden rule squirt

One Tiger to a Hill.

I don't want Thursday to come this week at all. I just want to scoop up little Scott and carry him off to a place, far far away. Away from the noise, the chaos and the doctors.

Sadly though, I am a coward, Thursday will come and we will go to clinic.

Today Scott and I watched the inauguration of President Obama. I'm not much into pomp and ceremony, and I have been called a "commie" more times than I can remember, but today was an incredible day - and hell, I'm not even American! Incredible to see the back of Bush (we did a little water boarding in his honour before breakfast - LOL) and even more so, to have a new President who might offer America and the World some common sense at last.

Before I go, a little Derry news. He come home today and told me that he had picked his electives for next year ... culinary and French!!!! I was, and still am, gobsmacked. I have been pushing for him to take French for a while now, a second language is vital and French is beautiful to speak, and my goodness, I think he was listening! As for culinary, when I asked why he has never shown an ounce of interest in the kitchen before he replied, "its because you dont cook, you just open cans". Well dang, that's me told! Culinary and French and a European passport ... wow ... that's a lot of doors I hear opening. Mind you, he did insist that he only took these electives as 'sniper training' wasnt on the list of options.

******* *** I hate ****** bloodwork and I ******* hate cancer

Too miserable to write much. Scott's counts were bloody awful today and he had 8% unclassified and other spookies.
We asked for repeat labs - which became a battle of wills - but in the end our request was granted. Second labs showed 2% unclassified but other abnormal cells, a lower hemoglobin and lower anc.
We went with the first anc which allowed Scott to have his methotrexate. The second anc would have meant a hold.
We now have a week of watching Scott closely and of trying not to freak out.






















At least with the undead all you need is a grenade launcher and a decent head shot.

Why must dudes do this?

Which reminds me,

http://windinyourvagina.blogspot.com/

incredible blog but not for the faint of heart! Be warned mother.

A Golden Globe for Heath.

I'm not much into the telly or films, the vast majority is absolute tosh and embarrassing to the human intellect, however kudos to the late Heath Ledger. I have never watched any movie 3 times, let alone from start to finish, but I just cant seem to get enough of his Joker. The last time we watched it Scott and I were close to tears knowing we would never see him play this role again and just sad that tragedy crept up and stole him, way too soon.

Its been a peaceful and incredibly boring weekend, just the way we like it! So, not much to report on really. Scott is feeling crummy but with the help of his friends Pepito Bismol and Ben A. Dryl he has crawled a little closer to the finish line. Derry had hockey yesterday and today and has turned into a puck thug, but anyway, he's loving it and the team are on a winning streak.

Heres a few pictures of the mighty aqualungmyfriend (who is such a GOOD CAT) and the boys ...

(oh and sometimes, just for fun, he cackles and disappears into thin air - weird!)

Well it’s been another rough week for little Scotty boy. I’m sure you’re sick of reading about his woes and I’m sure sick of writing about it, so I won’t detail all those weird and wonderful side effects anymore. He got through it, that’s the main thing.
Today was clinic … yeah big surprise huh.. and his blood work looked okay so he got another load of chemo. The anc and hemoglobin were a bit low considering where they were at last week but its getting to that point where nothing surprises me anymore.
I have obsessed with those lab numbers now for almost 2 years, scrutinized every ebb and flow and looked for patterns when there isn’t one. Sometimes they cause me to breathe a great big sigh of relief, other times it’s a case of sucking in air and holding it for 7 days, the ‘R’ word walking beside you every step of the way. Cancer sucks and so does the treatment.
But anyway, life trickles on.

ScienceDaily (Jan. 1, 2009) — An extract from grape seeds forces laboratory leukemia cells to commit cell suicide, according to researchers from the University of Kentucky. They found that within 24 hours, 76 percent of leukemia cells had died after being exposed to the extract.

The investigators, who report their findings in the January 1, 2009, issue of Clinical Cancer Research, a journal of the American Association for Cancer Research, also teased apart the cell signaling pathway associated with use of grape seed extract that led to cell death, or apoptosis. They found that the extract activates JNK, a protein that regulates the apoptotic pathway.
While grape seed extract has shown activity in a number of laboratory cancer cell lines, including skin, breast, colon, lung, stomach and prostate cancers, no one had tested the extract in hematological cancers nor had the precise mechanism for activity been revealed.
"These results could have implications for the incorporation of agents such as grape seed extract into prevention or treatment of hematological malignancies and possibly other cancers," said the study's lead author, Xianglin Shi, Ph.D., professor in the Graduate Center for Toxicology at the University of Kentucky.
"What everyone seeks is an agent that has an effect on cancer cells but leaves normal cells alone, and this shows that grape seed extract fits into this category," he said.
Shi adds, however, that the research is not far enough along to suggest that people should eat grapes, grape seeds, or grape skin in excess to stave off cancer. "This is very promising research, but it is too early to say this is chemo-protective."
Hematological cancers – leukemia, lymphoma and myeloma – accounted for an estimated 118,310 new cancer cases and almost 54,000 deaths in 2006, ranking these cancers as the fourth leading cause of cancer incidence and death in the U.S.
Given that epidemiological evidence shows that eating vegetables and fruits helps prevent cancer development, Shi and his colleagues have been studying chemicals known as proanthocyanidins in fruits that contribute to this effect. Shi has found that apple peel extract contains these flavonoids, which have antioxidant activity, and which cause apoptosis in several cancer cell lines but not in normal cells. Based on those studies, and findings from other researchers that grape seed extract reduces breast tumors in rats and skin tumors in mice, they looked at the effect of the compound in leukemia cells.
Using a commercially available grape seed extract, Shi exposed leukemia cells to the extract in different doses and found the marked effect in causing apoptosis in these cells at one of the higher doses.
They also discovered that the extract does not affect normal cells, although they don't know why.
The researchers then used pharmacologic and genetic approaches to determine how the extract induced apoptosis. They found that the extract strongly activated the JNK pathway, which then led to up-regulation of Cip/p21, which controls the cell cycle.
They checked this finding by using an agent that inhibited JNK, and found that the extract was ineffective. Using a genetic approach – silencing the JNK gene – also disarmed grape seed extract's lethal attack in leukemia cells.
"This is a natural compound that appears to have relatively important properties," Shi said.

PS. Whilst we were out aqualungmyfriend trashed the tree. And whilst Derry could have dealt him a severe thrashing, given him his marching orders and saved our lovely tree he instead took pictures with his phone and sent them to all his friends.
Here he is very close to the top of an 8ft tree...

Am I tempting Lady Fate by having a countdown? Hmmm, I’m not much of a believer in anything let alone destiny, yet counting down the weeks still seems like a somewhat foolish thing to do.

However, all being well, today marks his 32nd round with 4 more to follow. Today is FIVE.

It wasn’t a great day to be sure, his counts were really weird with a white count and anc extremely high and a very large number of immature and wacky cells. This is usually the time in his cycle when his anc is at its lowest; instead it was the highest it has ever been. It’s a little freaky, especially with a bunch of immatures, the nurse did tell me though that he is probably fighting a bug of some kind or is about to. This could very well mean a fever in the coming days and a trip to hospital. Hopefully not because Scott doesn't have simple 'bugs', he has calamities.

Later his port didn’t want to work which freaked Scott out no end. Boy does he hate having a port, after almost 2 years of having it attached to him it still makes him feel queasy. After a lot of attempts and jiggling it finally worked.

Later we headed over to the day hospital for his lumbar puncture with chemo – this should be the final one!! – and we waited and we waited and we waited. The doctor and anesthetist were ready, we were ready, but some clod in the pharmacy was being tight in handing over the chemo. 2 hours later it arrived and the procedure was done. The spinal fluid will be checked for cancer in the next few days so we just gotta sit tight and hope its clean.

After the procedure we head back to the clinic for vincristine. Vincristine must always given in a separate room from the spinal tap and chemo because if a mix up occurs and vincristine is injected into the spine instead of methotrexate and Ara-C then it would be fatal. This has happened on occasion but most hospitals now insist on not allowing vincristine into the room where the spinal is to be carried out. Even still, I always check.

So we get back to clinic he has his chemo, gets de-accessed and we say our goodbyes. Just as we’re heading out the door his port starts to gush blood all down his chest!! Grrrr.

What a day!

And there’s a hand, my trusty fiere!

And gie's a hand o’ thine!

And we’ll tak a right gude-willy waught,

For auld lang syne.

Happy Hogmanay and may you all be blessed with good willy warts in the coming year.

Today Scott had an appointment with an Orthotist to be fitted for braces for his damaged feet. It seems that his tendons have shrunk in two places from the chemo and this is what is causing him so much pain. When he is asleep his feet fall into an unnatural, yet comfortable (for him) position and the problem is exacerbated. So, for the forseeable future he must wear these instruments of torture to bed ...

He will also be getting a wheelchair in the next few days to allow him to get out and about a little more without struggling to walk.

Cancer sucks.

It is over and I am left with that deflated, post-Christmas feeling. All the preparations, the excitement and magic, the quest for “stuff”, it’s all over for another year. I hate those first few days after Christmas and loathe Hogmanay and the New Year. We have had such a wonderful Christmas, I don’t want to be sucked away from it, to be spun around and find myself back in the Coliseum facing the cancer lions again. Yeah I know, too many similes/metaphors … whatever.
Christmas was great. It was even civilized as I was a monster and insisted on clean bodies and teeth prior to the shredding of presents beneath the tree.
Santa was generous, the boys were chuffed to bits, I was spoiled rotten by David, the Yorkshire Puddings were a success and ROCK BAND 2 IS PURE DEAD BRILLIANT!
Only 361 days until we can do it all again.

Jake/Ozzie/aqualungmyfriend ... he loved his first Christmas too...

Scott had clinic today and I was so incredibly pleased to see good results. Lots of platelets, hemoglobin and a nice fat anc. I couldn’t help but worry that today’s clinic visit would in some way cast a dark cloud over Christmas. Last year he had been neutropenic for several weeks and I was holding off doing a bone marrow check for relapse, the Christmas before was when he first showed signs of being sick. Christmas with a happy, hungry, non-lethargic Scott will be wonderful!
Well I must go now, tatties to peel, poles to straighten, and such things. Merry Christmas dudes!

I just checked my temp, trying to decide wether to give in to the cold/flu meds or not, and it is 101.9. I feel like someone stuck a pick axe through my spinal column, so forgive me, this is going to be brief.

Counts yesterday were good. Scott had a high anc from the steroids and a multitude of platelets. Now we just have to hope he doesnt catch the dreaded lurgy off me.

Merry Christmas.

LOL...and Nana, dont tell me you didnt at least stifle a chuckle....