skittles blog

Micheal would have been so proud

2010-01-25T15:55:00.001-05:00

Epicness!!

2009-12-17T17:12:00.001-05:00

Scott has had a fever for 2 days. Taking him to the doc soon and Im panicking.

Happy Christmas.

2009-12-10T15:15:00.001-05:00

Clinic today, all looked good and normal. The perfect Christmas present.

Brought to my rockband knees by Axl. This is incredible.

2009-11-10T12:07:00.002-05:00

edit ... I did it!!!!!!!

2009-11-09T23:34:00.002-05:00

Sorry for being such a terrible blog-updater! Anyway, just wanted to say that the surgery went perfectly on Friday. The port was removed completely (sometimes part of it becomes attached and cant be taken out!) and the old scar tissue was also cut out and a new smaller and neater scar has taken its place. Scott had wanted to keep the port as a memento but there are strict rules that mean the port is sent to pathology for testing and then destroyed. The surgeon did however take a photo and give it to us. Its gross, with little bits of 'meat' attached to it. Its nasty. I think David is planning on scanning it to post on here for Sandie to see. LOL.

2009-11-06T11:58:00.001-05:00

It's just abut noon here now. We had a delay as Scott's surgeon had to tend to a trauma case. He was finally taken back to OR about 11:30 and we're just waiting for word of a successful "deporting".

More later.

2009-11-03T23:07:00.007-05:00

Just a very quick update to let you all know that Scott had clinic today and his bloodwork looked pretty good. Everything was much the same as last month with the exception of his lymphocoytes which were low - probably means he is fighting a bug of some sort, or could be allergies. He also saw the pediatric surgeon who placed his port back in January 07 at diagnosis. It was just a brief visit to discuss the surgery to remove it and for the doctor to check Scott over. Surgery is planned for Friday at 7.30am!!!!!!! UG. It seems strange that we have reached this milestone. Im not superstitious, but for some reason, it bothers me.
I remember all too well the day it was 'installed', the day following diagnosis, just sitting waiting for him to come out of surgery. He also had his first spinal chemo at the same time. It was a nightmare. I couldnt stop crying.
And now it's coming out. Wow.

For those not familiar, this is how easy it is to draw blood, give IV chemo or nutrition (such as TPN), or antibiotics using a port...

goosebumps, lovely goosebumps

2009-10-19T10:16:00.000-05:00

Weekend in truly awful photography

2009-10-19T08:41:00.008-05:00

Saturday marked the 5th anniversary of our landing on the shores of the US. Woohoo, do you have a flag? LOL. Sandie will be the only one to get that I'm sure. David surprised us with this beautiful, diabetes inducing, Scotland cake ...

Derry had a hockey game on Saturday and got the only penalty for a tackle which was not really illegal its just that the other kid was so small he got kind of flattened, and I guess the ref had little man syndrome (cos he was a shortarse too) and decided to bitch slap Derry with a "2minutes, feel shame" thing.

We found a new species of frog!!!

After sussing each other out for a while, I am now collaborating (long word for 2 plastic rock star gamers hanging out together) with the incredible, and one of the best 'plastic rock star' gamers in the world, my rb bff friend Angel! David, Derry and Scott are slowly becoming deaf and may kill me if I screech 2 Minutes to Midnight again, but hell, its been fun while it lasted!

Jake met Dave ...

No photo's - sorry - but after nearly 3 years of being unable to ride his bike, yesterday Scott dusted it off, dragged it out the garage and took off!! I would have taken a photo but a) it seemed so normal and natural and it wasnt till after he'd gone that i thought 'whoa dude, Scott just took off on his bike!!' and b) was too busy singing 2 Minutes to Midnight.

Well I was just about to post this when Scott got out of bed, grunted, farted, giggled, then picked up his guitar .. nothing like a rousing rendition of Ring of Fire to start off the day! UG!

2009-10-14T05:11:00.015-05:00

I'm still struggling to come up with a decent post about U2 without sounding like a complete sappy girl. I'm not going to give a review of the show because I cant remember any of it, even at the time I wasnt paying the blindest bit of attention to the music, was just lost in the 'OMG!!!-I'm sharing a field with Bono!!' - ishness of it all. That doesnt make sense does it?! LOL. Well it does to me.

I think that part of the reason why it was so extra-special and exciting was that it was such a huge surprise and so last minute ... oh and not having to pay for any of it - that was nice too!! We knew that U2 were coming to Tampa, but we also knew not only the price of the tickets but also how hard it was to get hold of them, and had written it off as something that simply wasnt going to be happening for us. That is until the Childrens Cancer Centre called me on Thursday afternoon!! It turns out that a very generous man connected with the stadium had some extra tickets and had given them to a couple of local charities, and then, someone at the CCC (who obviously must have some very cool psychic abilities, and had picked up on my 'I NEED to see Bono vibes) picked up the phone and called US! Poor Sharin, I think I screamed a bit. LOL.

So anyway, Friday comes and I'm a mess. Too fat and all my clothes were horrible. My hair wouldnt behave, I sneeze mid-mascara and have a meltdown, the air conditioning was working overtime and still I'm sweating buckets. By the time we leave the house (late) everyone hates me. As luck would have it though, our lateness was perfect as we missed the crazy traffic, cruised right on up to the stadium, flashed the VIP parking badge (oh yeah, so cool) and had just enought time to grab some U2 goodies and settle into our luxury suite (oh yeah, so cool ... again!).

You know, it would have been a great night even without any music. I'm sure Im was not the only person there who could have happily sat and stared at The Claw all night. It was beautiful, all flashy lights and glowy and alien-esque. Kind of like the spaceship in Close Encounters, you didnt need to see the aliens - or the band - it was cool on its own.

We shared the suite with another pediatric cancer patient and his mom, and some really nice kids from a local childrens home - they were SO well behaved and were obviously very, very happy to be there. It was a great atmosphere, just staring in awe at The Claw and watching the stadium fill up until every seat in the house was taken. All 75,000 of them. Wow.

A band named Muse from England - oh it was so nice to hear a familar voice - opened for U2 and they were incredible. My god, that dude could sing! What a voice.

I think I love him.

Then, came U2. :) OMG! Bono sang Breathe and it was all like still and quiet, yet electric and loud and supercharged awesomeness too. If you see what I mean. He was singing, the Claw was pulsating, The Edge was doing something magical with his guitar and all was right in the Universe. LOL. Am I overdoing it?! :) Truly, it was THAT good. And sorry, I know I havent even mentioned David, Derry and Scott yet, they were there I promise, but I think I was just wrapped up in my own little world so much that night. Is that so wrong. I dont think so. I do know that they were loving it just as much as me, well maybe not Derry because he's so cool and doesnt get excited, but anyway, they were there and they were having LOTS of fun too.

So, the band played on ... what they played I cant remember, its all a bit of a blur. Everyone in the stadium was rocking out. It was cool. Mr Scaglione, our kind benefactor, and some of his friends and colleagues came to see if we were okay and if there was anything more they could do for us .. Im telling you, these people were so generous and so interested in the children and genuinely concerned about what they had all been through, or were going through and really wanted to make sure they had the time of their lives. In fact, Mr Scaglione pretty much hung out with us for the rest of the night and really bonded with Scott. It was very touching.

Then, somehow, a backstage pass appeared for Scott to allow him to get through the bowels of the stadium and into the pit via the backdoor, so to speak. (By then the children from the home had left as they had a curfew and the other child wasnt well enough to go down to the Pit.) I thought he was going with Mr Scaglione and his friends but before you know it, they're dragging me (kicking and screaming I tll you) along with them too. So we scurry through the building, passing security, bodyguards, bono's cars (!!) and all sorts of backstage rock-star coolness and pop out right below the stage. We get there mid-way though Sunday Bloody Sunday and really, what more can I say. Cool man. It was cool.

Thank you Mr Scaglione and Childrens Cancer Centre. We had so much fun.

Scott and Mr Scaglioni (aka Mr Awesome!)

The Claw!!!

The Claw with fancy extending disco ball/flashing light thing

BONO!!! taken from pit, underneath claw/disco ball thingy

The Edge

Adam Clayton

Oh wondrous Claw!

2009-10-12T09:28:00.002-05:00

No cancer cells in spinal fluid.

2009-10-10T00:01:00.004-05:00

I have no idea where to start. I'm gobsmacked. Its been an incredible night thats for sure but I dont think I can really put it all into words just yet. For now I'll just post a picture of Scott and our new friends and some of the most beautiful people we have ever met ... and look close, do you see whats hanging around Scott's neck ...

And looky who we ran into as we were leaving ... Sully!!!! And wow, he couldnt have been more awesome. It was the icing on the cake. Thanks Sully, you made Derry's night!

I have tried my best not to gloat

2009-10-09T09:12:00.007-05:00

and held out about 17 hours, but cant contain it any longer.

Cause tonight ... we (thats me and Bono!!!! hahahahah oh yea)can be as one.
Tonight ...

More details to come on how we landed unbelievable tickets for this show.

edited to add: Sian Evans, daughter of The Edge, was diagnosed with leukemia at the age of 7 in 2006.

mmmmm lovely propofol

2009-10-08T12:31:00.007-05:00

Scott had clinic today and perhaps, hopefully, his last lumbar puncture. We were beyond nervous at what todays bloodwork would reveal due to the vast number of bruises that have been springing up on Scott lately. Not just the number of bruises but the time in which they were taking to fade. I didnt write about it, and havent updated on Scott in a while, simply because I "didnt want to go there". You know me, head in the clouds or buried in the sand, reality is often best avoided.

Anyway, his bloodwork looked great!!!! Suprisingly his platelets were very much within normal range, so I guess the bruises really did come from getting slapped about a bit by his older brother - lol - but why they have lingered on and on I dont know. His haemoglobin was 14.4 (normal), wbc 4.9 (low end of normal) and anc 3319!!! Wow for the first time in almost three years SCOTT HAS A NORMAL IMMUNE SYSTEM! (His normal anc's in the past have been artifially elevated due to the prednisone.) He also had decent monocytes which always make me happy. His doctor has given us the okay to wean Scott off Paxil which should mean a drop in weight very soon (YAY!) and his pentadamine breathing treatment is also seen as not necessary anymore.

After clinic we headed over to the day hospital for his lumbar puncture which oddly enough was done by the doctor who originally did the bone marrow aspiration which led to his diagnosis. The procedure went well and so we now wait and hope that no cancer cells are seen in the spinal fluid. If this is clear we can make an appointment with the surgeon, who placed his port almost three years ago, to have it removed.

I still don't really understand why ports are removed six months after treatment as this is not a magic number by any stretch of the imagination. What it does mean is that if the child has been off treatment for 6 months and doesn't relapse they are in GOOD remission but there can still be residual disease which can show up again many years following the end of therapy (ie relapse). Children that relapse in the bone marrow after being O/T for 6 months can try chemo again rather than face the absolute horror of a bone marrow transplant. Most relapses occur during treatment or within the first year but children are not considered cured until they have been in remission for ten years.

I'll leave you with a couple of photos of Scott prior to the lumbar puncture and another of him sleeping off his "lovely propofol" - damn its scary how much Scott likes that stuff! The doctor with him is Dr Wynn, a truly brilliant doctor and our hero.

Being Freddie!!!

2009-10-05T08:20:00.003-05:00

coming to Rock Band in 2 weeks!!!!!!! David and the boys will likely leave me. The neighbours will glare at me and plant For Sale signs in their yards. Oh yeah, ice ice baby. LOL!!

Read me

2009-10-05T07:32:00.002-05:00

Helpful autoerotic asphyxiation alternatives from The Bloggess.

Dont read whilst your littles are around or they'll come running wanting to know whats so funny and if you're ok and you'll have to lie or do what I did and say oh nothing, just reading an interesting article about INXS and your innocent child might just reply with oh yeah the lead singer wanked himself to death, why do people do that?
OMG.WTH!GRUP**'FXNBP#88@DDHpL!!!!!!!

Love the crocoduck tie!

2009-10-02T08:14:00.001-05:00

The Colbert Report

Mon - Thurs 11:30pm / 10:30c

Richard Dawkins

www.colbertnation.com

Colbert Report Full Episodes

Political Humor

Michael Moore

A good cat.

2009-10-01T09:33:00.007-05:00

Scotland, on my knee in front of the fire, blissdom ...

cool Jingle ...

With his big baby Springsteen ...

Scott's companion during chemotherapy ...

He was always there ...

RIP Jingle

2009-09-30T18:24:00.002-05:00

We've not updated for a couple of weeks, but today brought some sad news. We had to put Jingle to sleep today. He had fought a corneal ulcer in one eye most of the summer. We'd found he had high blood pressure which was complicating that problem. Then his blood test several weeks back showed decreased kidney function. Since this past weekend, his health deteriorated fast. By this afternoon, he was really bad. So shortly after 5, he was put to sleep.

Scott and Derry are both very upset. Jingle was a very old cat - best we know he was just around 20 or just over 20. Scott can't remember not having Jingle, and that cat was beside him all through his treatment. Derry can tell the story about Jingle showing up at their house in Aboyne on Christmas Eve well. Stephanie recalls him hopping in the window, parking by the fire and proclaiming their house as his.

I remember the first time I ever walked in her house in Aboyne. In less than 30 minutes, Jingle was on my lap and lying down for a nap. He had me right off. Stephanie said more than one person made comments about Jingle through the years and his "less than perfect" looks.

We think he was one of the best cats ever. An old scabby-tabby-toonser that never let you down.

Bye bye buddy.

pwn'd

2009-09-15T08:55:00.005-05:00

VISA so kindly bought us a new playstation (and yes mum I know its an indulgence and yes mum I know its not very grown up to put video games before bills :) No more RockBand on Scott's blog I promise. But damn I love this game. Call it post traumatic stress relief, call it 'mummys lovely big chunk of prozac', whatever it is, it works wonders.

Gotta go now, must knock the legendary wesker off another top spot.

Cursed by the yellow light of death, which according to Sony is very rare so duh, I guess we should have know it would happen to us!

2009-09-13T15:48:00.008-05:00

So sad (and Im not being bloody sarcastic, my Rock Band is inside!)...

David tried heroically for 8 hours to fix it ....

he's going to try again tomorrow with a heat gun and some chewing gun type stuff, weird, but it might just work.

2009-09-10T12:22:00.002-05:00

Just home from clinic and all is well. Scott's bloodwork was okay, not as great as last month's but the doc said not to stress about it. His wbc was 3.5 (low), hgb 14.0 (good), plts 226 (a dip from last month) and mono's 12.1. If it weren't for the slight increase in hgb and decent mono's I'd be very nervous. Anyhow, like I said, the doctor was happy.
He got a full physical and no swollen nodes or spleen were seen, all looked good. Oh yeah, he also got his latest "accident" checked out .... he managed to shoot himself yesterday with his airsoft gun, its amazing what a plastic pellet can do to your pinkie when shot from a few inches!!! Spaz. Then it was port-flush time which Scott went a bit freaky about. Its been 2 months since his last access and he got all tensed up and stopped breathing until his face turned red!! Lastly he had pentadamine to prevent PCP - its possible, all being well, that this might be his last breathing treatment, which would be nice because it hates it.
So, the plan is that in four weeks he'll go back for bloodwork and a spinal tap. If these are both clean then we can schedule to have his port removed. Scott is so looking forward to being port-free as it makes him feel queasy, but more importantly it will mean he can get back on his ice skates and ride the BIG roller coasters at Busch Gardens - previously it was only rides with lap belts as harnesses could jolt the port and cause the port to flip or even detach - which could cause a bit of a mess! He's also quite looking forward to seeing his cool surgeon again - Scott loved him because he had a twisted sense of humour and wore a skull and crossbones bandana.
Well thats all for now folks. Thanks for checking in. Bye. x

best friends

2009-09-01T21:08:00.000-05:00

Click me

2009-09-01T07:53:00.006-05:00

As Scott says, its like a trip to the zoo.

2009-08-25T07:25:00.004-05:00

Whomever is in charge of school start times and buses in Hillsborough county is a sadistic twit. 5 bloody fifteen this morning and we’re wandering around in the dark like zombies picking the scabby sleep crusts off our eyes and mumbling something about lunch money. The cats are all like “wtf?” and Derry’s looking like he wants to stab someone.
Anyhow, he doesn’t and goes off to become beautiful and I flip on the light. O horror, horror, horror (said Macduff) and I. I hope that insect doesn’t see me (said Adam Ant) and I. Can you tell I’m sleep deprived – ha!
Ants, big ones, had invaded and were busy having a rave in the cat food bowl. There was a line of them, to-ing and fro-ing, from the pool door, in through the cat flap, across no-mans land and pillaging our fancy feast. Grayt. So whilst I’m being awesome and cooking Derry some lovely bacon and eggs (it probably wont happen again – it’ll be jello pudding cups by the end of the week Im sure), poor David is staggering around like an old drunk, lunging at poor defenseless mutant ants with bug spray and a spatula.
Aaaah, back to school for little Derry sophomore. The end of a wonderful, long summer of warcraft and paling skin.
Scott sleeps on. Homeschooling has many benefits.

2009-08-13T12:56:00.002-05:00

Scott's labs were great. Anc 3300, wbc 5.3, plts 231, hgb 13.6, mono's 17!!!! Once I had that lab printout in front of me I could feel the stress gush out of me and hit the floor with a thud.

2009-08-12T14:03:00.003-05:00

Clinic tomorrow (bloodwork, physical and pentadamine)and Im sweating buckets. Scott doesnt seem too worried and even bought new drawers for the occasion (Stewie Griffin with speech bubble: "so, do you like what you see??" LOL.
I didnt think I'd be too much of a wreck once treatment was complete but Im worse than ever. David even more of a basket-case than me!
I guess that with the safety net of chemo being pulled from under our feet panic has set in. Also, we're now in the danger zone as far as relapse is concerned.
We have had a few reasons to be concerned, his appetite has decreased, mystery bruises, and there was a little petechiae about ten days ago. Yet, Scott has also seemed quite well, his cheeks are nice and rosey and he's got more energy than he's had since before diagnosis. Also no body pain or headaches.
We'll just have to see what tomorrow brings.

Thirteen!

2009-08-06T09:51:00.001-05:00

ENVY.

2009-08-05T12:23:00.003-05:00

So jealous that this guy managed to get his camera in, even more jealous of the young lad who, after a request from Billie Joe asking who could play this song, had the most drop-dead, goosebumpishly INCREDIBLE experience with the band - and did remarkably well. Watch until the end, so damn cool.

Yes Billie my love, we did have the time of our lives.

2009-08-04T00:03:00.006-05:00

Its gone 1am and I am still awake!!!! Pretty impressive huh? Just home from Green Day and apart from ...

1) I got frisked and had to give up my camera. Damn were they tight on cameras. Even worse than the nazis at Bruce Springsteen shows!

2) No close-up video on the jumbo-tron so could only leer at a very distant Billie-Joe. I am so bitter.

So yup, with the exception of the above, it was phenomenal. Great company in the TECO suite, and Im not just saying that, it really was a nice bunch, and true brilliance, as always, from Green Day. Will write more later. Here's a few pictures from my crappy phone ...

2009-07-30T11:57:00.001-05:00

New Drug For Children With High-risk Leukemia
ScienceDaily (July 30, 2009) — Each year, approximately 4,500 children in America are diagnosed with leukemia, according to the Leukemia and Lymphoma Society. A potentially deadly cancer of the blood, it is the most common cancer in children.
"Modern medicine can cure eight out of 10 cases of childhood leukemia, so parents can still be hopeful when they hear a diagnosis," says Dr. Shai Izraeli of Tel Aviv University's Sackler School of Medicine and Sheba Medical Center. "Our research gives hope and life to the 20% who might not make it as well as those who may experience a relapse."
The first researchers to discover a mutation of the JAK2 protein in patients with Down syndrome, the Tel Aviv University team suspected that this protein might also be linked to other disorders and diseases — and they were right. Based on the successful results of this research a drug that is already in clinical trials for a blood disease common in adults may be relevant for acute childhood leukemia. If initial trials go well, the drug could fast-track through approvals and could be available for treating children with leukemia in only a few years.
The recent findings are based on Dr. Izraeli's original discovery of the JAK2 in Down syndrome, published recently in the prestigious medical journal The Lancet.
Finding a model in children with Down syndrome
According to Dr. Izraeli, a similar mutation of the JAK2 in Down syndrome and leukemia causes Polycythemia Vera, a disease common in adults that leads to the overproduction of blood. This discovery of a similar mutation in a subset of pediatric leukemia cases may provide a path to new life-saving medication options.
Dr. Izraeli first discovered JAK2 mutations in children who initially suffered from Down syndrome and subsequently developed leukemia (a child with Down syndrome is 20 to 30 times more likely to develop leukemia during childhood than a child without it). Dr. Izraeli was then inspired to screen for gene mutations that could result in increased proliferation of cells. In collaboration with the iBFM Study Group, a European childhood leukemia consortium, 90 cases of Down syndrome leukemia from all over Europe were studied. A JAK2 mutation was found in 20% of these cases.
The discovery represents a unique biological phenomenon. "This is perhaps the first example of two very similar — but different — mutations that apparently do the same thing in a cellular protein. But they're associated with two completely different disorders, one that causes polycythemia in adults and the other that causes leukemia in children," says Dr. Izraeli.
"Those children at the highest risk for leukemia may be treated with inhibitors of JAK2," he says. "And because of the existence of polycythemia in adults, there are already drugs to fight polycythemia entering into trials as we speak. We will know in just a few years what these drugs are capable of."
An alternative to chemotherapy
Dr. Izraeli says the discovery offers "potential hope" to children who suffer from leukemia. "JAK2 inhibitors are not based on chemotherapy. The first experiences with these treatments show very few side effects. All that researchers need to do is to expand these clinical trials to children and adults with high-risk leukemia — and that can happen relatively quickly," says Dr. Izraeli.
Dr. Izraeli explains that typical chemotherapies for leukemia also have a high "toxicity cost." Children with leukemia are treated with 10 to 12 different chemotherapies over a period of two to three years. Some of them have long-term and irreversible damage, such as neurological, heart, bone problems and sterility. Researchers looking for viable alternatives may turn to Dr. Izraeli's research as a promising avenue for success.

2009-07-28T18:56:00.004-05:00

Last week our local Make-a-Wish chapter had their annual 'walk for wishes' and Scott was asked to speak with radio dj Corey Dylan about his wish-trip and to officially open their walk.

It was a fun and very worthy fundraiser and Scott was such a star, but damn it was so HOT!

"I went to a fight the other night, and a hockey game broke out"

2009-07-25T18:55:00.006-05:00

We knew it wasn't good when arriving at the ice rink this afternoon to see an ambulance outside. Once inside we see one of Derry's old team mates on the ice surrounded by medics and worried faces. It was horrible, the kid had taken a bad fall, stood up briefly to show 'he was okay', saw his arm facing in the wrong direction, and then collapsed. Turns out he'd broken his arm so bad the bone was poking through the skin. The hockey folks around here are a pretty tight bunch, and to have one of our own hurt, well it hurt.

He wont be playing hockey for a long while I guess, but its an arm and it will heal, just sucks though.

So after a while, once the zamboni had cleaned up the mess, Derry's game got under way. It was an awesome game until Derry got into a check with the scariest, toughest kid on the other team, a legend of a kid, the kid all the other kids skate away from instead of tackle ... well anyway, following the altercation the kid needed to be helped off the ice and is now being 'checked over' in hospital too. Thankfully his dad thinks he's fine, just a bruised ego more than anything. Derry has a sore thumb but is gonna have to watch his back from now on. And just for the record, Derry didnt even get sent to the 'box of shame', the check was perfectly legal. Oh and they won, 5-2.

mogwai

2009-07-20T21:09:00.003-05:00

2009-07-20T20:01:00.000-05:00

New Strategy In Tumor Treatment

ScienceDaily (July 20, 2009) — A new strategy proposed by researchers at Dartmouth Medical School and Amtek, Hanover, NH may treat tumors that do not respond to conventional treatment. The study uses a combination of two agents to selectively kill tumors while protecting healthy cells.

In previous studies, researchers discovered that a specific enzyme – known as methylthioadenosine phosphorylase (MTAP) – is missing in 35 to 70 percent of lung, pancreatic and biliary tract cancer, melanoma, glioblastoma, osteosarcoma, soft-tissue sarcoma, mesothelioma, and T-cell acute lymphoblastic leukemia. Although information on the incidence of MTAP-deficiency in breast cancer is still limited, researchers believe it is probably significant.1 Since the discovery of MTAP-negative tumors, there have been several proposals, over the years, to take advantage of the frequent absence of MTAP in so many lethal cancers. None of these proposals, however, has led to successful clinical use.

Dr. Martin Lubin, Professor of Microbiology, Emeritus, and co-author Adam Lubin of Amtek have offered a new approach. They say, "Our strategy consists of two agents. One drug is given that is toxic both to cancer cells and to normal host tissues. A second, but non-toxic, drug is also given, which protects normal tissues from the toxic action of the first agent. This two-drug combination therapy kills tumor cells while normal tissues are well protected." They go on to state, "Among the drugs used to kill the tumor cells, two -- thioguanine and fluorouracil (or its prodrug Xeloda) - are already in clinical use. In general, the dose of these drugs is limited by toxic side effects. However, with our strategy, greatly increased doses might be used and tumors not susceptible to low doses could be attacked successfully at higher doses, without harm to host tissues."

To assess the selective killing of tumor cells when they were present in excess of normal cells, the researchers designed co-culture experiments in vitro and animal studies are now in progress.

"We hope that successful animal studies will lead to clinical application as soon as possible," Dr. Lubin said.

The authors have applied for a patent based on the work presented.
1. Reference: Della Ragione F, Russo G, Oliva A, Mastropietro S, Mancini A, et al. (1995) 5′-Deoxy-5′-methylthioadenosine phosphorylase and p16INK4 deficiency in multiple tumor cell lines. Oncogene 10: 827-833.

2009-07-18T19:54:00.005-05:00

A couple of pictures from the hockey game today. Derry's team won 6-2, they are currently fourth in the league with two games left before the semi-finals.

It sucks to only be able to take bench pictures but my lousy camera isn't good enough for zooming onto the ice, or for speed.

And here is gammy eyed Jingle. He was back at the regular vet this morning and wowed everyone with his now perfect blood pressure and healing corneal ulcer. Next week he has the specialist again. You cant tell from the picture but his right eye is deep red. The vet reckoned it probably always will be as the blood from the ruptured capillaries seeped into his iris. Jingle was adopted as a kitten from 'Mrs Murray's home for stray cats and dogs' down by the docks in cold, damp Aberdeen about twenty years ago, now he's living out his elder years basking in the Florida sun. Not bad for an 'auld orphan toonser'.

for me mum

2009-07-18T14:09:00.002-05:00

I absolutely cannot believe you asked "who are Green Day?" I'm shocked and stunned. But here they are, you may want to turn a fan on first and make sure you've taken your hormones or you might just explode.

2009-07-17T19:50:00.004-05:00

Guess what my sweetie-pie-sugar-lump came home and surprised me with ...

GREEN DAY TICKETS!

hahahahahahahhahahahaahahahahahaheeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

Now all I need is a drool-proof outfit to wear. And liposuction.

Eye-liner is such a wonderful thing..

spinal fluid ...

2009-07-17T11:01:00.000-05:00

2009-07-16T19:08:00.002-05:00

Scotts spinal fluid still with the pathologist, no results today.
One more uber important thing that I forgot to mention yesterday ... Scott grew 1 inch in the last month. Since he hasnt grown at all since starting chemo this is kind of awesome. Mind you, he's still a midget, but its a start.

2009-07-15T19:35:00.002-05:00

Scott’s bloodwork looked pretty good. Anc 2500, hgb 13.6 (WOW!!), monocytes 11 and wbc 3.9. I was hoping the white count would be a little higher but was reassured that this was perfectly fine. Hopefully as time goes by it will creep up to normal. Some of his chemistries were a little off but again was told there was nothing major to worry about. His spinal tap was done with no problems but we won’t have the results for a day or two.

Sadly though, a little boy at our clinic died this morning. Thai had been fighting t-cell lymphoma (which is very similar and treated the same as t-cell leukemia) for many years and was one of the bravest, smiliest kids I’ve ever had the privilege to meet. He was truly awesome. A sad day. Rest easy little Thai.

http://www.caringbridge.org/visit/thai10

2009-07-14T18:33:00.004-05:00

Its been five weeks since Scott's last clinic appointment (put back a week due to Dezzys birthday), but tomorrow we're back in again. Scott will have bloodwork done, his pentadamine breathing treatment, a physical and a spinal tap.
Its been a good break between appointments and Scott is feeling better than he has in a long, long time. He's eating well (although perhaps scoffing down a little TOO much), the neuropathy is easing, he's playing with friends out in the street and looking good with pink rosy cheeks, and incredibly, during the last couple of weeks, has detoxed and kicked his codeine and ativan habit! We are so proud of him and relieved that he's no longer leaning on narcotics to calm him down or take the edge off the pain. I think even he agrees now that being able to go outside and play is better stress-relief than ativan, demerol, and all that good stuff.
On the surface all seems well and groovy, yet a return of acute leukemia would be seen in the blood and spinal fluid before symptoms were seen.
So, we worry. And probably, we always will.

Anyway, like they always say, nothing like a good old fashioned sing-song to chase away the cancer-clinic blues ...

remembering michael :)

2009-07-14T12:54:00.001-05:00

http://www.eternalmoonwalk.com/

2009-07-10T19:29:00.008-05:00

Yesterday our precious little Derry turned 15!! And unlike previous birthdays, disaster didnt strike and the day (which mostly consisted of building furniture, installing software, ooooing, aaaaahing and eating) went perfectly. Here he is, too cool to smile or even look at the camera, with his new toys ...

And here is "Bannockburn", Prince of the frozen wastes, destroyer of all that is good, slayer of fluffy kittens and master sock thief, or something like that. Believe it or not, this top level character which he has built over the last couple of years could be sold for around a thousand dollars, in part due to a rare 'picnic basket' add-on won on a gaming card. LOL. Oh yeah baby, and who says gaming doesnt pay?

On to our Jingle cat. Jingle has been at the vet every few days now for the last month and at his last visit (Tuesday) we were told that there was nothing more the vet could do. His ulcer had improved but was still very bad but more worryingly his eye was filling up with blood. The retina had become damaged and scarred and his vision was almost certainly gone in that eye. The vet seemed to think there was a very good chance he had a tumour behind the ulcer (in most cases tumours in cats are cancerous) and recommended we see an animal eye specialist in Tampa. I must admit I was ready to have Jingle put to sleep, and suggested it twice, hell he's 20 years old and there is no way Im putting him through any undue stress, pain, surgery or whatever, at his age. But anyway, David and the vet said that we should at least get to the bottom of it and see the specialist, so today we did, and would you believe it, there is no cancer, just a very bad ulcer and high blood pressure!! The high bp has caused capilliaries in his eye to burst and that is why we're now seeing a blood filled eye. So he is now on the full-spectrum ulcer meds, canine serum (thank you doggie blood donor!) and a blood pressure medicine the same as Scott had to take. The vet said that because the ulcer was so deep Jingle definately wasnt in any pain but its highly likely he is having mild headaches due to the bp. Anyway, hopefully now my raggedy old kitty will start to get better and live for many, many more years ... or a few months at least. Here he is looking a bit pathetic...but alive, oh, he's still a-live, ohhhhhhhh, he, ohhh, he's still alive ...

2009-07-07T19:00:00.004-05:00

"We are missing Michael Jackson
But we do know we had him, and we are the world."

an incredible honour for little Shaheen ...

2009-07-02T21:48:00.002-05:00

I’m bored and fed up trying to clean cat pee out of the carpet so here I am posting nothing of consequence and a Rowan Atkinson video.

Its been a mostly good week for Scott, he’s looking and feeling great, his unconditional 10 year green card arrived in the mail, and he unlocked a new character on some game he’s playing (which is obviously cause for immense joy and merriment). The only downer has been lots of stress and worry about our little Jingle cat (and nope it wasn’t him who peed on the carpet). A couple of weeks ago he was diagnosed as having an ulcer in his eye and despite treatment it has gotten much worse until we were told on Monday that his entire eye could rupture at any time. After much discussion with the vet we agreed that sedating and operating on a 20 year old cat was too risky, we had the ‘end of life’ chat, and we also talked about a last ditch attempt to shrink the ulcer and get rid of the infection which had set in. The vet can’t culture the eye due to Jingles age and anesthesia issues so he doesn’t know exactly what we are fighting, so we are just throwing every damn thing at the problem and keeping our fingers crossed. Jingle is now on 6 different meds, 5 of them to be given 4 times daily. Oh and Jingle has to be in isolation also, yup he really loves this, poor kitty. Anyhow, he went for a follow up yesterday and we all thought the time was nigh as his eye looked even worse but when the vet looked he grinned and said ‘oh yes, much much better’. So tomorrow he goes back in again, then Monday, then Friday, and hopefully Jingle is going to be back to his old happy scampering ways very soon.

That’s about it really. Like I said, our green cards arrived which really should have been cause for celebration but with everything that has happened in the last 2 years, our residency is now of no major concern. A few years ago when we were kicked back to London (for 7 months!!) to fight the bureaucrats at the Embassy it was devastating, but compare that with having your baby’s life on the line and it pales into insignificance. Still, it’s good to have legal ID once more. We were beginning to feel like that dude in that movie who was stuck in an airport terminal, our British passports had expired along with our temporary US green cards, we were non-people. (Derry thought it was cool being an illegal and took to wearing his sombrero more often.) Anyhow, it’s done now. Scott looks funny in his green card picture. It was taken during treatment when his hair was growing in dark and curly, cept it doesn’t look curly in the picture, just messed up. He looks like a plump Billy Joe from Green Day which he is thrilled about. Derry looks funny because they made him tuck his hair behind his ears and I look Slavic and really, really mad.

showing solidarity ...

2009-06-24T14:07:00.006-05:00

2 years ago Scott was starting brain radiation, today ... just being silly ...

oh and Derry's much awaited cool new sniper-rifle finally arrived, not sure what he's gonna snipe but he sure is happy ...

2009-06-23T21:16:00.001-05:00

2009-06-23T18:38:00.003-05:00

I'm almost too scared to say it but Scott is starting to feel better.

He hasnt thrown up in 2 weeks and his panicky charge to the bathroom is almost a thing of the past. He is also eating fairly well, still gluggling back too much Sunny D (which I should really stop buying but, according to Scott, it helps the medicines go down - lol), but apart from that he's doing good. The neuropathy in his ankles and feet is still an issue but he isnt complaining about it as much.

Last night we went to knock a few balls around and without thinking HE RAN a few steps. Scott hasnt run anywhere in over 2 years. Pretty cool huh?

solstice '09

2009-06-21T20:04:00.002-05:00

our ancestors were just so damn cool werent they ...

2009-06-19T19:27:00.002-05:00

ScienceDaily (June 19, 2009) — Despite great strides in treating childhood leukemia, a form of the disease called T-cell acute lymphoblastic leukemia (T-ALL) poses special challenges because of the high risk of leukemic cells invading the brain and spinal cord of children who relapse.
Now, a new study in the June 18, 2009, issue of the journal Nature by scientists at NYU School of Medicine reveals the molecular agents behind this devastating infiltration of the central nervous system. The finding may lead to new drugs that block these agents and thus lower the risk of relapse.
T-ALL, a blood-borne cancer in which the bone marrow makes too many lymphocytes, or white blood cells, strikes several hundred children and adolescents in the U.S. annually. While greater than 90% percent go into remission through a combination of chemotherapy and radiation, up to one third of this group end up relapsing. These patients are at particular risk for tumor cells to invade the brain and spinal cord, and to prevent this all patients receive chemotherapy injections into the central nervous system and in some cases cranial irradiation—approaches that cause dangerous side effects, including secondary tumors and potentially permanent cognitive and developmental deficits.
“In general, T-cell acute lymphoblastic leukemia is treatable with chemotherapy and radiation,” said Ioannis Aifantis, PhD, associate professor of pathology and co-director of the Cancer Stem Cell Program at the NYU Cancer Institute, who led the new study. “But you have a very high rate of relapse. And after the relapse, it is not treatable because the cancer occurs in tricky places like the central nervous system,” said Dr. Aifantis, who is also an Early Career Scientist at the Howard Hughes Medical Institute.
“We are very proud of this research and very excited about the potential implications for new therapeutic approaches to prevent or reduce the spread of leukemic cells into the central nervous system,” said Vivian S. Lee MD, PhD, MBA, the vice dean for science, senior vice president and chief scientific officer of NYU Langone Medical Center.
In the new study, Dr. Aifantis and his colleagues found that a key protein receptor embedded on the outer surface of leukemic cells is responsible for infiltrating the brain and spinal cord. “What we have found is that leukemic cells over-express this receptor.” said Dr. Aifantis, “If you knock out this receptor, these cells will not go to the brain under any circumstances.”
Previous research had strongly implicated a famous gene regulator called Notch1 in the progression of T-ALL. The Notch1 gene (a mutated version gives fruit flies notched wings) is an oncogene, or cancer-causing gene, in humans. Certain kinds of mutations in this gene have been found in nearly half of all T-ALL patients, and current estimates suggest that the gene’s regulatory influence might be implicated in nearly 90 percent of all T-ALL cases.
For their new study, Dr. Aifantis and his colleagues first introduced overactive forms of Notch1 into mice. As a result, the mice developed leukemia and the leukemic cells efficiently infiltrated the inner layers of the membrane covering the brain. “What happens is that the leukemic cells get into the cerebrospinal fluidthat protects our brain and spine, where they fill up the space and they can affect brain function, either by secreting chemicals and toxic factors or even by simple pressure,” Dr. Aifantis said.
His team then examined an array of other mouse genes to identify candidates that might fall under the regulatory spell of Notch1 to promote the brain and spinal cord infiltration. The screen revealed a promising gene for a protein named CCR7, which is embedded on the surface of lymphocytes. This chemokine receptor, as it’s known, normally senses and responds to small chemical attractants called chemokines, which act like recruitment signals for lymphocytes to converge on a specific site during the body’s response to infection or injury. In leukemia, however, these lymphocytes proliferate abnormally.
CCR7 was already known as a key player in normal lymphocyte migration and as a binding partner of two chemokines named CCL19 and CCL21. Previous studies had implicated these protein interactions in the metastasis of other tumors such as melanomas and breast cancers. Dr. Aifantis’s team also discovered that the gene for CCR7 was overactive in four of five T-ALL cell lines derived from human patients, bolstering suspicions that it played a central role in the disease. Conversely, a mutation that knocked out Notch1 also led to dramatically reduced CCR7 levels.
To characterize CCR7’s potential role in T-ALL, the researchers used two sets of mice: one in which the receptor was turned on, and a second in which it was turned off. When the team delivered an identical number of human-derived leukemic cells to both sets of mice, those with the CCR7 chemokine receptor turned off lived almost twice as long. Using bioluminescent imaging, the researchers quickly understood why: animals with the active CCR7 receptor had many more tumors. Tellingly, the T-ALL cells had infiltrated the brain and spinal cord of those mice.
Further experiments suggested that when healthy mice received leukemic cells in which the gene for CCR7 had been turned off, the cells could not migrate to the brain even though they reached other body tissues. As a result, the mice survived significantly longer than counterparts with an active copy of the gene. On the other hand, introducing a normal version of the same gene to mice otherwise lacking it was enough to recruit leukemic cells to the brain and spine.
“We wanted to determine whether CCR7 by itself was sufficient for entry into the central nervous system and that’s what this experiment shows,” Dr. Aifantis said. “By changing one specific gene, you now have your function back.”
Finally, the researchers identified the small protein that acted as the “come hither” signal for the CCR7 protein receptors. One candidate, CCL21, was undetectable in leukemic mice. But a second, CCL19, appeared in tiny veins of the brain near the infiltrating tumor cells. When the researchers introduced leukemic cells carrying a gene for CCR7 to mice that naturally lacked the CCL19 chemokine, the mice survived longer, suggesting that their increased life spans might be due to a disrupted interaction of the two proteins. The leukemic cells had no trouble infiltrating other tissue like the lymph nodes, but were completely incapable of infiltrating the brains of CCL19-deficient mice, the researchers report.
“Perhaps there are antibodies or small molecules that can block the interaction between these two proteins or reduce their interactions,” Dr. Aifantis said, “and hopefully that could be used as a type of prophylactic treatment to prevent a relapse in the central nervous system among patients who have already been treated for leukemia.” Such a treatment, he said, could prove a good alternative to the intensive and often poorly tolerated radiation and chemotherapy now used to try to block such a relapse.
The study was led by Dr. Silvia Buonamici, a post-doctoral fellow in the laboratory of Dr. Aifantis in the Department of Pathology and the NYU Cancer Institute, and in the Helen L. and Martin S. Kimmel Stem Cell Center at NYU Langone Medical Center. Other study investigators are; Thomas Trimarchi, Maria Grazia Ruocco, Linsey Reavie, Severine Cathelin, Yevgeniy Lukyanov, Jen-Chieh Tseng, Filiz Sen, Mengling Li, Elizabeth Newcomb, Jiri Zavadil, Daniel Meruelo, Sherif Ibrahim, David Zagzag, and Michael L. Dustin from NYU Langone Medical Center; Brenton G. Mar, Apostolos Klinakis, and Argiris Efstratiadis from Columbia University Medical Center; Eric Gehrie and Jonathan S. Bromberg from Mount Sinai School of Medicine; and Martin Lipp from the Max Delbrück Center for Molecular Medicine in Berlin.
The study was supported by grants from the National Institutes of Health, the American Cancer Society, the Dana Foundation, The Chemotherapy Foundation, the Alex’s Lemonade Stand Foundation, the Lauri Strauss Leukemia foundation, the G&P Foundation, an NYU School of Medicine Molecular Oncology and Immunology training grant, the American Society of Hematology, the Juvenile Diabetes Research Foundation, the National Cancer Institute, a gift from the Berrie Foundation, and a fellowship from the Jane Coffin Childs Memorial Fund for Medical Research.

kittehs

2009-06-18T20:35:00.001-05:00

Celebrity Morph by MyHeritage

2009-06-17T11:17:00.001-05:00

MyHeritage: Celebrity Morph - Family images - Vintage pics

Celebrity Morph by MyHeritage

2009-06-17T10:47:00.001-05:00

MyHeritage: Celebrity Morph - Family name history - Blank family tree

2009-06-11T20:03:00.002-05:00

So another clinic day dawned, Scott and I shared a bottle of Pepto, downed some good pills and went forth unto the dragons den. I hate clinic.
However, we have been reprieved once more and all is well - ish! Woooooooohooooooooooooo!
His counts werent great, platelets - 260, wbc 4.4 and hgb 10.8. No unclassifieds! :) I was really surprised his hemoglobin was so crap since he has decent colour in his cheeks but his nutrition levels were also abysmal so it would seem the two are possibly linked. If he's not vomiting he's fasting (because he's too scared to eat) so maybe the lack of iron and protein are now showing up in the bloodwork.
His physical went fine, bp a little high but I think it was just nerves. No swollen lymph nodes or balls (yup he always gets a thorough groping down there because thats one of leukemia's favourite hiding places!!!!). Spleen also normal (again a hiding place).
Scott has been referred to a GI specialist, so hopefully we can get an appointment soon and nothing too sinister will be found. The possibilities of either crohns or colitis were mentioned today which are obviously not the most pleasant of conditions for Scott to have to deal with, anyhow we'll just have to see what the doc says and go from there.
Well thats it for now, Im so tired and my nerves are shot.
Thanks for checking in y'all.

On a brighter note

2009-06-09T11:51:00.002-05:00

Yesterday Derry, Scott and I received congratulatory letters from the United States Citizenship and Immigration Centre stating that we have jumped through all the necessary hoops and were now Legal Permanent Residents of the USA.

It has been an hilarious experience, and now, just for fun, maybe we should do the whole process again but in reverse. All in favour of our deep-South David becoming a minion of her Majesty the Queen, say "aye".

As for Scotty boy, well he's an enigma for sure. One day he's duracelling up and down the pool, devouring everything in site, spouting forth weird and wonderful facts (we call him 'Oracle', he wasn't that way prior to the cranial radiation, something mystical happened in that human microwave!!!!) and chattering non-stop. The next, he's doing the dying swan routine.

He has his monthly appointment on Thursday and will also have his port flushed and a breathing treatment. Hopefully counts will look good and we can all exhale.

2009-06-08T14:26:00.004-05:00

Its been one year since Callum left us. Scott talks about him all the time, sometimes he's broken-hearted and other times he laughs and giggles at his 'highlander' daddy. Derry never mentions him. This morning Scott was reminiscing and coming out with some of his favourite doric phrases. "Awa and bile yer heed maither" (be off with you mum, and boil your head), "Ken fit like" (you know what I mean) and "Foos yer doos" (how are you doing).

Kevin is still very ill from the stroke he suffered a few weeks after Callum died. He's out of hospital but still needs full time care. He cant talk except to say, "aye". He seems to live in a world of confusion with no signs of recovery. I get so choked up when I think about Kev, we were incredibly close.

I still cant believe that I'll never again be able to pick them up, dust them off or put their world's to rights. More importantly, I'll never again hear Callum's interpretation of why the Giza monuments were built or what he thought of Margaret Thatcher and the Poll Tax. LOL.

we love lolcats

2009-06-06T12:35:00.001-05:00

http://icanhascheezburger.com/

2009-06-05T12:22:00.002-05:00

Scott isnt well again. He's been throwing up and has tummy ache. I dont know whats wrong and the clinic said to just keep an eye on him for a few days and hope it goes away. Obviously we worry about it being leukemia. Vomiting isnt a symptom of leukemia yet he sure puked a lot prior to diagnosis.

"but the tigers come at night"

2009-05-31T19:17:00.009-05:00

http://www.youtube.com/watch?v=4BvBkTmDWBA

Im still reeling about this. She should have damn well won.
She scrubbed up well though didnt she!!!!
I love her.

Scotts favourite....
http://www.youtube.com/watch?v=KglFff6ubVE&feature=PlayList&p=f4sfIAyOgwc
maybe because he was 'riverdancing' when he was only knee high to a grasshopper, maybe because its just so darn funny.

update:
just saw this on Skyhttp://news.sky.com/skynews/Home/Showbiz-News/Susan-Boyle-Admitted-To-The-Priory-Amid-Fears-Over-Her-Health-Following-Britains-Got-Talent-Final/Article/200906115292374?lpos=Showbiz_News_Carousel_Region_0&lid=ARTICLE_15292374_Susan_Boyle_Admitted_To_The_Priory_Amid_Fears_Over_Her_Health_Following_Britains_Got_Talent_Final
... not surprising really. I get a bit like that when we play Rock Band.
The Priory will have Susan right as rain soon I hope.

2009-05-30T21:37:00.007-05:00

Here's a few pictures of Scott in the pool this afternoon and also his new haircut which I cant get to look nearly as cool as the dude did last week.

He was feeling great until this evening but that seems to be the way of things lately. He's okay one minute then puking the next with panic attacks and just generally feeling like death warmed up. We have started detoxing him from ativan and codeine so maybe this is causing all his ups and downs. Also, he just got pulled off Bactrim so this could be the culprit too. I dunno. Its kind of worrying but I'm just hoping that when some of these drugs are out of his system he'll get his groove back.

Scott isn't too chuffed that we're taking his happy pills away but for a while earlier he could at least see the funny side of it. He launched into Amy Whitehouse's, "they're gonna send me to rehab, but I said, no, no, no." Spaz!

I love the wind in your vagina

2009-05-28T11:39:00.000-05:00

http://windinyourvagina.blogspot.com/

"The web of our life is of a mingled yarn, good and ill together."

2009-05-24T22:55:00.003-05:00

Its midnight and we're just home from a very worrying ER visit.
All started well this morning, Scott was feeling great and he had had lots of fun at the hair salon being pampered by this gothy, tatted, pierced, hairdresser dude with a heart of pure gold. He got his tres-cool mohawk and off we went to our friends house for a Memorial Day pool and rock band party.
Well we were only there an hour or so when I noticed bruises all over his legs. Lots of lots of small blue bruises. Panic set in, I called the wonderful Dr Rossbach and he said we should come directly to ER.
We stopped off at the house to get Scott changed and lo and behold, the bruises had vanished. Now bruises dont just vanish, so we're all like what the hell? They apeared then they disappeared. It wasnt petechiae, it wasnt dirt, its wasnt a rash, they were bruises, and then they werent, they just faded away.
The trip to St Joes was somber and reminiscent of the one we took 2 and a half years ago. And dammit I even said a little prayer (hey, even RD admits he could be wrong!!!) ER was packed full of sickly looking kids, mums and dads with tears in their eyes and homeless drunks. Thankfully Scott was bumped to the front of the queue and we didnt have to wait to be seen. The lab however took forever to process the blood.
Finally we were called back and put in a room. I asked for the results but they wouldnt give them to me so I chatted up the head honcho and he said, "sure you can see your sons results", and I'm all shaking and sweating and stuttering, my eyeliners dripping down my face, but whatdya know, his platelets werent 12 or 70 and 100, his platelets were normal at 207. Not great but certainly not low enough to cause spontaneous bruising. His hemoglobin was 13 (normal), his wbc was kind of low at 4.0 but he had decent monocytes (13.5) so that was a good sign too that nothing sinister was going on. There were no immatures or unclassifieds, all in all a reasonable cbc.
But that didnt explain the mysterious appearing and disappearing bruises and both the ER doctor and Dr Rossbach were mystified but did point out that they see bizarre and unexplainable things every day.
We were disahcrged with a diagnosis of 'we dont know'. Weird to be sure, but better than the alternative.
Alls well that ends well.

2009-05-21T22:15:00.001-05:00

Wednesday nights continue to instill in us all a dread of what the morrow will bring and our tradition of chilling out with good snacky treats, cuddles and mindless TV carries on. Last night was supposed to be that way but took a nasty turn when Scott had full-blown Ambiem side effects. Ambien is supposed to lull you to sleep and if not you could be in for trouble and that’s what happened. Scott couldn’t fall asleep instead he became hyperactive, then sick, then the hallucinations started. He was dizzy; he tried to bite the leg off a GI Joe (curious!) and then saw pens and pencils everywhere (even curiouser). I knew it was the Ambien and nothing more suspicious and knew it would pass, but until it did it was heartbreaking.
Today we had a better day. Scott ate well – lots of yoghurt and fruit – and even asked for Saltines and peanut butter!! Now this might not sound strange to most normal folks with normal kids without eating problems, but its strange – and good – for Scott. He has only had peanut butter once and he hated it, now all of a sudden he feels a need for it. As soon as he asked for it I remembered what the psychologist said to us way way back at the beginning of treatment. He told us that when the children finish treatment many of them eat differently, their taste buds change and they eat things they have never eaten before. Well I sure hope he’s right, it’d be good to see Scott become a little more adventurous – and health conscious - with his diet.
We also managed to dodge the rain clouds (its Ark weather down here in Florida) and get out for a nice walk this afternoon. Scott still walks funny and the pain is worse than ever but he managed it. His bruises are still very present; the least said about that the better.
Scott’s fat is dropping off and boy am I jealous. Every day he looks leaner with definition returning. He’s now wearing clothes he hasn’t been able to squeeze into for over a year. The chins are ever present but receding. Yay!! Oh and on Sunday he’s booked – with a master designer no less – to have a mohawk with highlights!
More importantly than anything else his sense of humour is returning. It’s been AWOL for a while now but a few days ago Vickki Pollard made an appearance again along with his “I am the only gay in the village’ recital. *This will only make sense to the UK folks I think.* This evening he announced how he wanted to become a spy for Richard Dawkins and infiltrate Jesus Camp 09. Not sure wether RD wants a Jesus Camp spy but never mind, good to know Scotty’s mind is on things other than leukemia … even if it is spying on Jesus Camp.

2009-05-19T21:53:00.003-05:00

Uggg this off-treatment lark is a bitch to be sure.
Scott finally stopped spouting bodily fluids about 10 days ago. David and I breathed a big sigh of relief and Scott unclenched.
Last Thursday he had his first official O/T check up with, spookily enough, the doctor who originally diagnosed him. As he had been in the previous week and his blood looked good the doc didn’t order more tests, he just physically checked Scott over and sent him on his way.
So all seemed well and groovy until Scott started throwing up again on Saturday morning. He’s also riddled with bruises which are THE red flag to a leukemia patient (indicating platelets being crowded out by cancerous cells) BUT he had been wrestling with his brother on one of his better days. Each bruise has now been counted and catalogued – any more show up and hey ho hey ho its off to clinic we go. Sunday and Monday he was also sick, tired and miserable but today no puke and a wee bitty more of an appetite.
I thought the end of treatment would be a cakewalk, its not, its hell.

Finally, in case you didn’t see this today, here is Ida
http://news.bbc.co.uk/2/hi/science/nature/8057465.stm
isn’t she a beaut!!

More beautifulness, Springsteen and aqualungmyfriend ...

2009-05-07T11:04:00.002-05:00

Scott was still very sickly yesterday and much to my dismay the clinic wouldnt refill his nausea medicines without seeing him first. I was hoping to keep plying him with some good drugs and bury my head in the sand but they werent having it.
So we went in to the "off-treatment" clinic, which I didnt like very much, nothing like the same old familiar cancer clinic I spose, and he got checked over by Dr Tebbi - which Scott calls his 'feel-up'. The doctor couldnt see anything obviously worrying, nothing distended, no signs of dehydration, nothing like that. Blood was drawn and we were sent home with lots of lovely little sample pots and instructions to keep Scott on a ginger-ale diet for a day.
The blood results came back this morning and thankfully everything looked okay. His hemoglobin and platelets are good and his anc is 5000. He is still oozing bodily fluids left, right and centre though, so goodness knows what is going on. A simple bug perhaps, but with Scott I have my doubts. He doesnt have simple bugs.
David is also quite ill with symptoms similar to Scott but I dont think its the same problem.
Doctor Tebbi is also going to send Scott to another specialist in the coming weeks (once he is feeling a wee bit better) regarding his chronic diarrhea, he suspects it could be IBS brought on by the chemotherapy. Shit! ( <- please pardon my pun.)

2009-05-05T10:19:00.002-05:00

Scott's not well. He's been throwing up these last few days and his temperature is rising. Our worry meters are through the roof. Have avoided the hospital so far but unless he perks up very soon then I think we'll be going in.

2009-05-01T20:55:00.000-05:00

As mindblowing and as wonderful as it is to finally reach the end of POG9404, life in our little patch of the universe continues much the same. I still think of Scott as having cancer and he still behaves as if he is still a sick little kid. It’s all a bit strange really, it becomes your life for so long and then all of a sudden you’re told to bugger off, stop taking the pills, and not come back for a month. I think we all feel a bit lost and orphaned.
This is a sorry excuse for an update, but I can’t find the words lately. I have lots to say and nothing to say.

2009-04-20T12:40:00.002-05:00

All Clear!
More later, Im kind of stunned, Scott has gone all emotional, the cats are freaked out (I dont think cats like exuberance and grand displays of excitement) and David thinks he's going to have a heart-attack.
ALLLLLLLLLLLLLLLLLLLLLLLLLLLLLL
CLLLLLLLLLLLEEEEEEEEEEEEEEAAAAAAAAAAAAAAARRRRRRRRRRRRRRR!!!!!
hahahahahahahahhahahahahhaahhahahahahahahahahahahahahahahahah

the tears of the immigrant

2009-04-19T18:17:00.001-05:00

I know we’ll be celebrating tomorrow. I can feel it in my waters. Just can’t believe that we’ve lost so many along with way and they won’t be around to share in the joy. Callum and my dad should have stuck around. I wish I could scream and shake my finger at them. They should have been here, or at least, on the end of the phone. Damn.

2009-04-17T14:51:00.003-05:00

I just spoke to St Joes and his spinal fluid has come back negative for leukemic cells. This is great news of course but the bone marrow is the one Im REALLY worrying about. The clinic closes in a few minutes so we wont hear anything now until Monday at the earliest.
Patience is not one of my virtues. Growl.

2009-04-16T21:45:00.006-05:00

Guess what? Im still a blithering wreck! LOL. However, today went well, his counts looked good, platelets and hemoglobin rose slightly, no unclassifieds or anything sinister, and his monocytes looked good. Healthy counts sure settle nervous tummies!! Here is Scott with his beautiful labs ….

Since his anc (an anc is some complicated, for me at least, mathematical equation involving his neutrophils and white count and calculates his ability to defend against infection) was well above 750 he could go ahead with his final dose of chemotherapy. This is Bob (our amazing nurse with a twisted British sense of humour) wiring him up …

His last (hopefully) infusion of methotrexate completed ….

Next we went off to the day hospital for the spinal tap and bone marrow aspiration. Scott was angry because he wasn’t hooked up to the monitor until the last minute and wanted to play ‘heart rate etch-a-sketch’ and ‘flatliners’ with it. Scott looking mad …

Finally everything got underway and David and I had to leave the room for the procedures. They don’t like parents to stay as the bma can be pretty brutal and sometimes it takes quite a lot of drilling to get the samples they need. I once walked in as they were cleaning up and it sure aint pretty! Like David said earlier Scott did wake up during the procedure and tried to pull the needle out of his back. Thankfully he doesn’t remember. Dr Tebbi took three samples of spinal fluid and two of bone marrow. I think he said one of the bone marrow samples was to be used for research but I could be wrong. My mind is still a bit fuzzy. The other samples will be tested for leukemia and so for now, we just wait.

So that was about it really. Scott woke up and cried for a while which he always does after anesthesia, he doesn’t know why, there is no reason, he just cries. Weirdo. Then he got angry at having to lay flat for an hour. Then he whined a lot. Then we left completely gobsmacked. Is that it? The end? It all feels strange.

Later we hit GameStop, Tropical Smoothie, SteaknShake and then went for ice-cream. Lots of presents were opened and lots of “wow”s were heard. Then everyone fell asleep. Except me.

Just waiting for that phone call.

Scott and his beautiful, beautiful angels. We love them all so much …

Back home

2009-04-16T18:25:00.000-05:00

We've made it back home and actually Scott felt well enough (or was drugged enough) to stop by Cold Stone this evening.

As mentioned earlier, his counts were quite good. The spinal and bone marrow procedures went well - except it seems Scott tried to reach around and grab the bone marrow needle out of his back during the process - while under anethesia.

Doc Tebbi said his spinal fluid looked fine. It wasnice and clear. The lab reports on his bone marrow won't be available until late tomorrow or even early next week.

We're all tired now, and will put a bit better post up later or tomorrow.

Mid-day update

2009-04-16T09:43:00.001-05:00

We know a number of you are wondering what is happening today. Scott got very good counts back with no unclassifieds. Most things in a good range.

His very last syringe of methotrexate just finished. He is hep-blocked and waiting to wander over to the day hospital for his spinal tap and bone marrow aspiration.

So far, so good.

2009-04-15T14:06:00.002-05:00

Well tomorrow is the big day and darn its scary. We're all swinging between great excitement and extreme worry so its kinda weird in the Walker/Paterson household right now. Whilst one of us might be all wooohooo-ie and giving it big grins another is quiet, moody and in deep contemplation.
We have to be at the hospital early tomorrow morning. First Scott will have his port accessed and have blood tests run. Hopefully there will be no dodgy cells and all counts will be good. If his anc is over 750 Scott will receive his last dose of chemotherapy (IV methotrexate). Should his hemoglobin or platelets be low he'll have transfusions. Then at about 11am he'll go to the 'day hospital' and have anaesthesia prior to a spinal tap and bone marrow aspiration. Once Scott wakes up he has to lie flat for about an hour to prevent what they call 'spinal headache', then we can go home.
The samples will be analysed over the coming days and checked for leukemic cells. Obviously we want these samples to be clear. We could receive preliminary results tomorrow afternoon or Friday but it will more than likely be Monday or Tuesday before we hear anything definite.
OMG Im such a blithering idiotic wreck. Make sure y'all wear your lucky knickers tomorrow, ok?

WOW! Watch this ....

2009-04-15T12:41:00.000-05:00

http://www.youtube.com/watch?v=9lp0IWv8QZY

2009-04-09T21:14:00.003-05:00

I cant believe this shit. Scott has one more week of treatment left and instead of great excitement we are yet again faced with the dreaded "unclassifieds". His bloodwork today was okay apart from '*UNCLASSIFIEDS - 3*' in big ugly letters. I know I should calm down and take comfort in the rest of the blood report looking pretty typical, but I cant. I know I may be repeating myself but unclassified cells seen within the peripheral bloodwork of a leukemia patient could indicate cancer cells circulating in the bloodstream. On the other hand, they could also be damaged and unrecognisable cells produced by an over-stressed bone marrow.
Scott has had unclassifieds before but never two weeks running.
After clinic I went to Walmart to stock up prior to the Easter gluttony rush and had a full-on panic attack. I felt like such a spaz but since Walmart is full of weirdos I probably blended in quite well. Goodness knows how I am going to get through the next 7 days. And in case I sound like a whining, whinging idiot, pease understand this is not about me, its about Scott. I cant put him through anymore of this hell. Next weeks bone marrow and spinal will tell us what is going on, remission or relapse. It will be the best news I have ever recieved or the worst. I. AM. SCARED.

2009-04-07T20:14:00.006-05:00

Today Scott took steroid pill number 1800. His last one!!!! I tried to capture the moment on camera but he growled at me so you’ll just have to take my word for it.
Scott is of course excited and relieved that this is all coming to an end but since we’re slap-bang in the midst of hell week (vincristine) and he is in constant pain, the end still seems far off. He is also worried sick that maybe this isn’t the end after all. We have seen too many children relapse or face life-threatening side effects and this is definitely something that has been on his mind lately.
I can’t lie and promise that everything is gonna be just fine. I have told Scott the facts and figures re t-cell ALL relapse so he knows that the odds of being cured are in his favor. He knows he was a “rapid early responder” and reached remission quickly and that his prednisone response was also good. He understands the difference between t and early pre-t and how he is more than likely t-cell. All positive things.
As sad as this sounds I think he is scared to give up his chemotherapy and the security it gives him. He’ll be fine though, just needs some time, a new skateboard (he was skateboarding hours before diagnosis and hasnt done it since - doctors orders!) and a long, hot, fun-filled summer.
Anyhow, as miserable as Scott is right now, today is still a happy day. And to celebrate, I give you happy things, Morton Harket :) ….

and 'cake or death?' ...

2009-04-02T21:07:00.002-05:00

Curiouser and curioser …
Well, Scott did get his chemo today, hopefully his very last dose of the lovely vincristine. He also had 80% methotrexate (reduced due to having low counts these last two weeks) and has started back on the prednisone and 6mp.
His anc had limped up high enough to start back on chemo yet it still wasn’t great. His hemoglobin, platelets and white count also rose significantly and the monocytes are still hovering quite high. His eosophils and basophils (‘allergy’ cells) were much improved since last week so that’s good too. However (I always seem to have a however don’t I) he did have 10% bad cells – unclassifieds and abnormal lymphocytes. Needless to say this has scared the crap out of me and what should be the start of celebrating the ending of this nightmare has been somewhat dampened. I have been dreaming of these ‘end days’ for so long now, and now that they’re here the damn bone marrow fairy decides to go and screw it all up.
Dr Tebbi’s opinion was that these cells were more than likely due to his bone marrow desperately trying to recover and in the process spitting out damaged cells. Were it not for Scott having high monocytes and platelets though there would be cause for immediate concern and investigation. And yes, he’s the genius and I’m just a dropout with a few O’grades and a CSE in music, but still I will worry.
As for Scott, well he’s miserable, in pain (neuropathy) and spending much of his day on the toilet. He doesn’t even seem to care that today was his last vincristine and 14 days from now he will take his last dose of chemo. Perhaps a head shrink would say my anxiety ectoplasm has oozed into Scott and led to his mega-downer but I don’t think so. I may be a complete neurotic freak but I have also become proficient in the fine arts of faking a happy look when I see his weekly blood sheet and lying my arse off.
Well that’s it for now; I’m tired and need to go lie down with Silent Hill and some chocolate. I’ll write more again soon, maybe even shock you all and post something happy for a change!! Actually ... ps ... I do have a happy thought ... yesterday I caught a glimpse of the pre-cancer Scott!!! It was wonderful and kind of weird. He has had the classic "moon face" for over two years now and has virtually no definition left in his face as its so swollen. But because its been 4 weeks now since his last steroids his face has started to shrink, chins are receding, and low and behold, the old Scott is still under there! :) It sounds kind of silly I suppose, Scott is Scott after all, but it was mighty damn good to see him again underneath all that hugeness.

2009-03-26T20:58:00.002-05:00

Well today was a bitch. I guess we should have expected as much being that we are doomed. What should have been the start of our celebrations turned into a slap in the face and a big ‘ha ha ha, up yours’.
Scott’s counts fell again!!!! They were dismal last week but since there were lots of monocytes we had expected a rise and to be able to go ahead with Scott’s final dose of vincristine and prednisone. Instead we have to face yet another week of lockdown (due to Scott being severely neutropenic) and major angst as to exactly why his counts are falling.
His bloodwork showed a drop in all lines, red, white and platelets. The monocytes also fell. The only cells that rose were basophils to an astounding 8.9!!! These cells are an indication that the body is fighting an allergy and the normal values are between 0 and 2. The clinic told me that this is the highest number they have seen since last spring. Strangely though, Scott is showing absolutely no sign of allergies. So for the next week he is to take 2 different allergy medicines and we’ll see if this helps his counts next Thursday. I’m already teetering on the verge of being a certified window-licker so if no rise is seen next week I’ll be doing these updates from Bedlam (or the Tampa equivalent!).

Here is Scott at clinic today waiting for the nurse to draw his blood. He was feeling a bit paranoid about his double chin so this was his attempt at disguising it - spaz ....

2009-03-19T18:09:00.000-05:00

Well, like I said last week, Scott’s bone marrow has had enough. This was seen again today when his blood work came back with a very low anc. Too low for chemo and too low for anything other than a lock-down for poor Scotty boy. It’s been a while since I’ve had to write about low anc and infection, but here we are again, Scott with no immunity and me with my Clorox wipes.

Sorry for not updating more often, I guess Im just sick of this whole malarky.

2009-03-12T21:35:00.000-05:00

Scott’s bone marrow is scunnered. His counts today were okay but had actually dropped following his steroid pulse. He has had 35 cycles of prednisone now and this is the first time we have seen an anc drop. I’m quite surprised (and rather pleased with myself) that I’m not in meltdown mode, it doesn’t take much to tip me over the edge as you’ve probably gathered by now, but strangely I feel ok…calm even. In some weird way it feels like we have reached not just a chemical ending to this screwed-up period in our lives but also a biological full stop. So, not only are years of research and trials in agreement that we’ve thrashed the cancer the best that we can, Scott’s body is also saying, “enough, I’ve had enough”.

2009-03-05T23:16:00.002-05:00

Scott had his second to last vincristine today; he also had methotrexate and starts back on the steroids (which were increased to 180mg a day) and 6mp nightly for two weeks. I had hoped for an anc increase since last weeks was low and boy did I get it. His anc was almost 4000. This is far higher than the doctors would like it to be but since his counts are fluctuating wildly an increase in chemo wasn’t considered. Scott’s anc is no longer following even a vague pattern as it did until fairly recently, Im not too sure if this is normal or not at this stage in the game, maybe he has developed some sort of tolerance to the methotrexate, I don’t know.
So we now face another bitch of a week but at least the light at the end of the tunnel is getting brighter. We do have a new addition to our pain fighting arsenal – Demerol – described to me as being Tylenol w/ codeine’s big brother. Hopefully it’ll kick ass and make life a little more bearable for Scott in the coming days.
As you probably know by now the steroids make Scott hungry. Well 2 weeks ago after finishing his steroid pulse he was weighed, and again today. I know he wont want me to tell you how much he weighs as he’s a little paranoid about being so chubby, but he weighed eleven pounds less today than he did two weeks ago. Eleven pounds in two weeks!!!! It’s going to be incredible to see that weight drop off in the months to come. He should also start to grow. In the last 25 and half months he has grown 1 centimeter, he currently measures in at 4 foot 11 inches and his brother (older by 2 years) is almost 6 foot 2 inches.
I have attached two links re t-cell and early t-pre cell leukemia. ETP is a newly recognized sub-group and holds a dire prognosis. Scott obviously was not a part of this study so we have no sure way of knowing whether he is actually T or ETP. I knew from Scott’s wbc at diagnosis (89,000 – high but reasonable for t-cell) and early remission that these are good indicators for successful treatment but this is not scientific proof in any way that he is T rather than ETP. Anyway, I raised this at clinic today with the doctor and was pleased to discover that he was up-to-speed on this study. He agreed that Scott was more than likely t-cell. This was good to hear yet still a 10-14% (depending on whether you go by St Jude statistics or the Italian study) relapse rate is cause for concern. When you think that we have been hit by something only 250 – 300 children in the US are diagnosed with each year you soon learn to never have the “well it wont happen to us” mindset again. A relapse is much worse than initial diagnosis, especially whilst on treatment or in the year following. Transplant would be recommended and in T-cell this is rarely successful.
Well that’s it for now. I gotta go give Scott his lovely strawberry flavored chemo and get some shut-eye. Goodnight, sleep tight.
http://insciences.org/article.php?article_id=2569
http://professional.cancerconsultants.com/oncology_main_news.aspx?id=43224

".. born of a jackal", actually thats a lie, but it sounds cool

2009-03-03T11:08:00.020-05:00

On Sunday I officially became middle aged, shrivelled and crusty. Heres a few pictures of our little shindig:

I was 'flocked' by my freaky friends ...

Got a depressing birthday cake from my love, he also gave me spa treats (to help with the sagginess I spose) and best of all Godiva's chocolate strawberries ...

Derry pretending he like's lager, and yes I know they have rules about this sort of thing in the US but considering he's Scottish he's actually a late developer ...

It's my party and I'll sing if I want to ...

But then, disaster, Rock Band was commandeered, grrrrr, I hate sharing my toys ....

Sara, David, Derry and Sara ...

Brandon doing Billy Idol very, very badly ...

Ron and David who sings too well and wont ever be invited back ....

Sarah and David ...

Brittney and Ron (her dad) ...

Poor Leigh was harrassed into singing and was incredible ...

Cute ....

And another cutiepie (boy did I have to watch my langauge!) ....

Sara avoiding the microphone ...

Brittney and Derry ...

We even had a pinata ...

Thank you to everyone for the cards, gifts and for such a great day.

2009-03-02T19:21:00.003-05:00

Sorry that I’m way overdue on my Thursday clinic update. I’ve just felt exhausted lately and instead of staying up late reading the news/caring bridge updates/blogs etc and writing something on Scotts page I’ve just been hitting the sack and addling my brain reading some toshy novel.
Anyhow, Scott is doing okay, not great by any stretch of the imagination, but okay. His counts last week were pretty awful but he got his chemo and we struck another week off. He has 2 doses of vincristine (chemo) left to take, 6 of methotrexate (chemo), 10 days of 165mg per day of prednisone and 28 days of 6mp (chemo). In 5 and a half weeks (unless he has any delays) he’ll have a bone marrow biopsy and a spinal tap and if they are clear then hopefully he can start on the path to recovery. Surprisingly I am okay about him going off treatment. Most parents aren’t, and I know that David is nervous; they feel anxious having the safety net of chemo pulled away, but I’m not as pissing-my-knickers scared as I thought I would be. It’s the next 5 and a half weeks and the end of treatment tests that are causing me to be a complete mess. I’ve never found the so called “new normal” (which is the biggest pile of crap phrase ever damn well uttered IMO) during Scott’s diagnosis and treatment. The nurses tease me mercilessly, yet kindly, about my regular meltdowns and how each week I give them the 3rd degree regarding his counts and symptoms. Hell they even know I have to knock back half a bottle of Pepto Bismol, a hot toddy or two and a handful of Xanax just to make it to clinic!! Anyway, what was I rattling on aboot? I’m not sure this is making any sense to non-cancer families or not? What I’m trying to say is I’m even more of a mess than normal but not worried about withdrawing chemo. You see, I’ve been digging deep and reading everything I can since this shit started and there are doctors out there who believe that t-cell leukemia is so aggressive that continuation therapy (the less intensive last year of treatment) is not strong enough to hold back a relapse. So by that reasoning everything Scott has received lately is not protective against a recurrence so stopping chemo is of no consequence. Continuation therapy (called maintenance in pre-b cell leukemia, the most common form of Acute Lymphoblastic Leukemia seen in 85 – 90% of cases) is most definitely beneficial, and maybe it is in t-cell, but it is a little controversial. So this is what I cling to and boy, I can’t wait to see the back of these lifesaving yet cruel and tortuous drugs. And whilst I’m on the subject, I will never ever forget those who have gone before us, the parents and children who bravely became human guinea pigs and forged, for children like Scott a path, and a good chance of long term cure.
Sorry for rattling on and thanks for checking in.

2009-02-19T22:52:00.004-05:00

Thursday came around again and Scott and I tried to hatch a plan. How does a cancer patient ‘throw a sickie’ in order to avoid a doctor visit? What astoundingly brilliant and cunning scam could we conjure that would allow us a ‘Get out of clinic visit without incurring the wrath of doctors and the social services’ card? Our combined genius came up with nothing. Nowt.
For the last 108 weeks we have spent every Thursday at the cancer clinic, mostly outpatient but sometimes stressed to high-hell for one reason or another, as inpatients. It just gets a little trying, and tiring. Every Thursday waking up with a pounding headache and a desperate need for vast amounts of Pepto-Bismol and Xanax, wondering if today will be a ‘move forward one space’ day or the day when the shit hits the fan.
Anyway, we did go to clinic of course, and we did move forward. Yay!! Scott’s counts weren’t all that great but like I said last time it seems his bone marrow is exhausted and the boost in counts following prednisone is nowhere near as dramatic as it used to be. His platelets rose and his hemoglobin fell, there were 4% immature cells but they were recognizable and not the dreaded ‘unclassifieds’. So he received his 101st dose of methotrexate and we were on our way.
Whilst I was there I mentioned the pain issues – well I didn’t just mention, I said I would consent to no more chemotherapy unless pain control was addressed – and was thrilled to get approval for Demerol. Every cycle the pain has increased and it’s got to the point now where Scott cannot be expected to simply ‘suck it up’. The doctors really don’t want to over-medicate the children and are very cautious in giving out strong opiates and the like, but Tylenol w/codeine simply isn’t cutting it anymore. I think with him only having 2 more doses of vincristine left it was felt that something with a bit more clout would be okay for the last few weeks. I was so excited. Finally, and at long last, Scott wouldn’t have to endure such terrible pain (and with it, high blood pressure) and could sail through his last couple of months stoned and happy. So, we get our stash of Demerol and Scott is given permission by the doctor to use it to get through the last of this cycles pain. Cool. Well it would have been if the damn stuff worked!! So much for our little Walgreens pot of 10 magic beans!! Why oh why oh bloody why doesn’t any of the really good stuff work for Scott??? Neurontin and Paxil didnt help. Dapsone nearly killed him, Reglan turned him into a pysho-monster and Compazine was just plain heartbreakingly horrific. Even the PS3 no longer holds the same mind (and pain) numbing attraction! Oh well, as long as the chemo works. That’s the main thing.

2009-02-17T23:33:00.002-05:00

Sometime during the night the pain in Scott’s jaw subsided and David awoke at 5.30am to find him sitting in the kitchen binging on Prawn Cocktail Tayto’s. He continued feasting on salt laden foods all morning, devoured an entire pizza for lunch and still wasn’t satisfied. He ate pistachio nuts, garlic bread and apples all afternoon and evening and has now collapsed in my bed, too swollen to move. 165mg of prednisone a day will do that to you. I think we wrote once before how the kidney specialist was shocked at how much prednisone his protocol called for and told us this was twice the amount an adult transplant patient receives. Scott looks dreadful; he’s like a huge red butterball. He still has the pain but it has moved into his back now, tomorrow it will be all over his body and hopefully by Thursday he’ll be on the mend. Until next time at least.
Today I did something which scares the bejeesus out of me. I made an appointment to see the doctor for my Well Woman!!!! I have only been to the doctor once since Scott was diagnosed with leukemia. It was a very quick visit, a simple request for something awesome to dull the emotional pain and panic attacks and I was gone, vowing never again to see a doctor. Maybe its normal for parents of children suddenly diagnosed with a life-threatening disease to develop a phobia for all things medical, I don’t know, all I know is that I am horrified at the thought. (The only reason I made the appointment is because of the terrifying case of a very young woman in the UK who now has only weeks to live because of cervical cancer). I also believed that if I had my check up before I was 40 I could avoid a mammogram. So, I called, made my appointment for next week, confirmed that I could get a xanax refill during the Well Woman, clearly stated that I was still under 40 and didn’t need a mammogram only to be told that Health Insurers now cover 1 scan between the ages of 35-39 and that I would be getting one. Shit! Bad, bad news.
David has also been hassling me (and I know he means well) to have an annual check-up. LOL. I don’t think so. I know my blood pressure is beautiful (95 over 56 this morning) and so is my cholesterol. I don’t want anyone listening to my lungs and I certainly don’t want anyone looking at my blood.
But whilst this experience with pediatric leukemia and all the horrors it entails may have left me cold at the very idea of any medical evaluation, it has certainly opened my eyes on disease prevention and food. Look at what I had for my tea (dinner) ….

It is juiced broccoli, carrots, apples, lime, lemon, a big hunk of ginger and an orange! Yes I drank it and yes it was foul. This has been my diet lately along with muesli, nuts, soy milk, berries and smoothies (and chocolate, icecream and cake) and this is what Scott has to look forward to in 8 weeks. It’s got to be better than chemo, surely? Speaking of which, time to wake Scott up for his 6mp.

Darling fascist bully-boy ....

2009-02-16T16:05:00.002-05:00

We are in the midst of the vincristine squall and it sure isn’t pretty. Vincristine is one mean bitch yet she does a great job in kicking the crap out of the bone marrow, and hopefully destroying every last cancer cell. Every cycle seems to be harder than the last and Scott is thoroughly miserable. He told me earlier that it’s a good job we don’t keep a gun in the house as he would have happily taken it and blown his brains out. I think he was being overly theatrical although Im not sure. His blood pressure has been very high from the pain but Labetolol brings it down again pretty quick, we just have to keep a close eye on it. A repeat of last year’s fiasco would not be good. He has also just finished day 4 of the 5 days pulse of prednisone and the cravings and munchies are now in full swing. As you know, the vincristine causes massive jaw pain, so to have a child with such insatiable hunger and a more-or-less paralyzed mouth is like a cruel damn joke.
So it’s been a very quiet weekend, just hanging out here trying to keep Scott (from shooting himself) amused and comfortable. David and I made a pact not to mention or celebrate Valentines Day and it was wonderful. We scowled and bitched at each other just like normal. Ha ha, screw you Hallmark. No hockey for Derry this weekend and no more for a while I guess. I’m not sure when the new season starts, not for a while I hope. Apart from hockey being so ridiculously expensive it is also a ridiculously early morning sport AND it causes to too many bruises.
Re the Paypal Link. As David said in his post we have been overwhelmed with support and are incredibly grateful and relieved. Leukemia is scary, ugly and also, very expensive and we, like the majority of you, simply don’t have spare money, let alone thousands and thousands of dollars of spare money. Thank you to Nana, Grandmomma and Papa, Nina, Shel, Kristy, the Krug family and again to PZ and Pharyngula. Your kind donations will get rid of a big chunk of our medical debt and have done much to bring our stress levels down. We also want to thank everyone for the heartwarming messages we received. They have all been saved for Scott to look back on when he is a little older. I really hated having to put up that begging button and still feel dreadful about it but you guys didn’t give us the cold shoulder, as I was expecting, instead it brought out the very best in human nature and empathy. Of course, we could have tried this ...

2009-02-14T11:57:00.002-05:00

2009-02-13T22:45:00.003-05:00

Sorry for no update yesterday on clinic day. We've been quite busy and Scott and Stephanie both have just felt completely horrid. Scott posted an ANC of around 2500, so the full monty of vincristine was given. Steroids started up and joint pain is ramping up tonight. That's "normal" for the first week of his 21-day cycle.

However Scott is extremely emotional right now, and only has restless sleep in spurts. He's got a high level of anxiety about treatment ending. I'm not sure if any of us know what to expect, but it is really doing on a number on him mentally. He also demanded Stephanie buzz his hair down today. He was complaining about it making him too hot and sweaty. Emotions just run all over for the poor kid right now. I can't imagine all of the things going through his head.

So Week 100 officially got a check mark put next to it on his road map of treatment. 8 more official weeks on the protocol and then......well......"follow ups". A BMA at the end. A couple of spinals at 3 and 6 months post-treatment. But no more chemo.

I want to second Stephanie's appreciation towards all the wonderful folks who have come over from PZ's website and donated to help us. She's much better at writing than I (she says I write like a robot, and most folks probably doze off before getting to the end of my ramblings), but please know the funds you wonderful folks donated ARE an incredible, unexpected help. I am humbled by your generosity towards us.

Off to see if any of us (outside of Derry, who goes to sleep in about 3.2 seconds, and sleeps like a hunk of granite) can manage some rest tonight.

2009-02-12T09:50:00.003-05:00

To commemorate 200 years since the birth of Darwin the Royal Mail issued these postage stamps today. My mother is now running around the Isle of Wight trying to track down 1st day covers for me. Go Mom!

Darwin Day, 12 February

2009-02-11T20:32:00.005-05:00

Whilst many familes may hand down through the generations a family bible, we dont. Instead Derry and Scott will inherit the family "bloody nora child, take your grubby little fingers off that book" Darwin collection. One of them will have to be chopped in half obviously, but och well.

2009-02-09T23:19:00.004-05:00

4 days ago I put up the PayPal link, I wrote an explanation as to why I felt that we had to ask for help and I contacted someone who I have the utmost respect for and to whom I thought might be able to get the word out.
Well, my goodness, I never thought for one moment that this plea would, within hours, turn into a sort of mini ScottAid. The support from Dr. P Z Myers and his readers at http://scienceblogs.com/pharyngula/ has been overwhelming. Not only have we received donations but also many emails of comfort and support from around the world. Most of the donations were for $5 or $10, several were substantially larger, and it just goes to show how every little bit really does help. A total of just under $4000 has been donated!! David, Derry, Scott and I are gobsmacked and have absolutely no idea how to say thank you and let you SEE just how amazed and grateful we are. I wish I could line up everyone who chipped in or sent us a message and give you all a big cuddle.
Like I said in my previous post, we have become bogged down in medical debt. For a while we managed to stay afloat but there comes a point where you have used up all your rainy-day money and all of your families too! These donations have relieved a great deal of stress and will go a long way in helping us keep the wolf from the door.
Obviously our main concern here is Scott’s health and wellbeing. He has suffered so much in the last few years, first the dog-attack, then cancer and the side effects, a stroke, shingles, the death of his Dad and Granddad, fungal pneumonia and more recently cerebral edema. Thankfully he has a twisted sense of humor and can see a funny side to all of it – well sometimes at least – other days he just feels doomed. Oh hell, I’m waffling on again and can’t quite remember where I was going with this. I think what I’m trying to say is that the bottom line is Scott being well, and Derry too obviously, and David, and me! Health is everything. Yet, believe me it sucks when your child is seriously ill AND the debt collectors won’t stop bloody calling. No-one can wave a magic wand and guarantee a cure, but what people have done is simply shown their humanity and said, “Sure, I’ll give you a helping hand”. I just hadn’t expected so many hands!
Thank you PZ and all at Pharyngula.

Also thank you to Shel and to Kristy. You both kind of got swamped by the invasion but we saw your names in there and are very grateful to you for digging deep to help our family. Thank you.

A little Scott news … he is still fighting this cold and feeling miserable. I am in the same boat, so we are sharing my bed at night (we have been quarantined) where we cough and sneeze and blow our little noses on the bed sheets and wait for morning to come. His anc on Thursday was a pathetic 763 (neutropenic) so how he has avoided getting a high temperature is beyond me. I just hope that his body can keep fighting this without the need for a hospital stay. On Thursday, if his anc is okay, he is due for vincristine, methotrexate, 6mp and prednisone so next week will be horrible too.

Lastly, we were all sprawled out on the couch yesterday watching some drivel on the TV when an advert for Cialis came on. So, as I do in these situations, I start chattering away very loudly about the first thing that comes into my head, in this instance I went with how much I was missing tomato ketchup crisps (chips) when all of a sudden Scott, whilst still watching the Cialis Ad and with a dead serious expression on his face, pipes up with, “I have that problem too, I need Cialis”. Derry cracks up laughing and David and I just look at each other and share an, “oh shit” moment. A multitude of thoughts are running around my head, he is going through puberty after all, is something ‘wrong’? Would he even know if something down there isn’t working right? Has he read something about chemotherapy and late effects? Dammit he’s too young to have a willy problem!! So, after a moment, I turn and ask him what makes him think he needs Cialis. His reply, “I haven’t had a normal poop in months Mum, I’m constipated today, tomorrow I’ll probably have the runs. Immodium is useless so maybe Dr Tebbi will give me Cialis for my rectal dysfunction?” He was dead serious, and I am still laughing.

Oh and one more lastly, congratulations to Derry for being so awesome and being on the winning ice hockey team this year. He played well and made an amazing save. This dude was charging down the ice determined to score, Derry was struggling to catch him so decided to fly instead. He shot down the ice, splattered into the dude; hit the puck away and both of them ended up inside the goalie net. He’s all bruised up but happy as a lark. Here's a blurry picture of him going to colletc his medal:

Goodnight, sleep tight and thanks for coming by. x

2009-02-08T00:11:00.002-05:00

Just a quick, late update tonight for those of you across the pond. Derry's team managed to win the Final tonight, by a score of 4-2. He was quite happy, as his knee didn't betray him this evening. Also happy as Anthony, who lives a couple doors down, plays on the other team.

Scott continues to have coughing fits. He is most certainly fighting the bug that has been going round here. Knock on wood - no fever to this point. As you all know, hitting the 100.5 mark results in a 48-hour minimum stay at the Hotel Tebbi (otherwise known as St. Joe's). Obviously our biggest fear is the chest congestion taking deep hold and leading us to another bout of pneumonia.

We want no complications (no one does). The danger of even minor issues reared its head yesterday with another local child. A young girl that lives in our area has been battling neuroblastoma. Jessica was responding to treatment, but needed platelets 8 days ago. Somehow the platets she received were infected, and she reacted badly. Sadly, she passed away yesterday. After all the battles she had faced, such a problem took her away.

Folks wonder why we worry endlessly about every little blood count anomaly, additional drug or procedure. There are none which come with zero risks. Everything seems a risk to these kids. It seems too many are paying the highest price.

2009-02-07T09:09:00.004-05:00

Scott and I didnt make it to the game this morning (which is still in play) because he is still 'down with the sickness' (come on, get up, get down with it). Neither of us have had much sleep the last few nights and dragging him out of his nest at 7am this morning to go and sit on the bench at the ice sports forum didnt seem like a wise idea. He is awake now and pleasantly buzzing from his cold and flu medicines and looking forward to getting his make over later this morning.

Anyhow, the reason for my post is that Derry's team are already leading 6-nil, and its still only the first period!!! It looks like they are gonna go through to the final tonight! Bring. It. On!

PS. Damn me and my big mouth. Derry got pummeled and took a bad fall in the 3rd period by his best friend from high school (who plays on the opposing team) and has busted his knee. His team won the semi 8-1 but I'm not sure Derry will be able to play now. He's laying down with an ice pack and knocking back the ibuprofen.

2009-02-05T22:13:00.008-05:00

As you may have noticed we have added a new gizmo to the blog. I know you are only here because you care about Scott and his welfare and I know that you would all help if you could. I also know that many of you have already been kind (given us big checks!) in helping us through these tough times. There is also the harsh reality that not only are we skint, but you are too. However the elephant is in the room, please feel free to ignore it. Should you wish to help, it is there, ready and waiting.
Any money we receive will be put towards medical bills and prescriptions. We have good insurance but a high deductable ($4000) AND co-pay ($2000). And whilst Scott may be approaching the end of treatment we will still have off-treatment bills of $6000 in the coming year for such things as breathing treatments, monthy labs and hopefully, the removal of his port. As Scott was diagnosed just prior to the end of the finanical health year then we are responsible for 4 full years of payments. Incidentals (gas/petrol/non presciption drugs such as pro-biotics, immodium and benadryl/treats/bribes at hospital/craving weeks!! etc) easily run to $1500 a year. I wanted to lay this out here so you dont think I'm pulling any old exaggerated number out of my head. If all goes well (no relapse) then this leukemia will have cost in excess of $30,000.
We had hoped , and had promised ourselves, that we would never have to do this. Thank you and sorry for such blatant squirming and begging.

2009-02-05T19:50:00.001-05:00

2009-02-05T19:32:00.005-05:00

Scott has been fighting a cold and for the last few days he’s been lying around on the sofa like a little white, coughing, snot oozing, sweaty, maggoty type thing.
So, I was pleasantly surprised to see his anc hadn’t bottomed out. It wasn’t great and he was only thirteen over the required magic number of 750, but at least it wasn’t zero. So he got checked over to make sure he didn’t have ebola, pneumonia or the Black Death and was given the go ahead to have his breathing treatment and chemo. Whilst his counts weren’t great it was nice to see a small rise in platelets and hemoglobin. He also had 46% monocytes which is off the charts – but good. In a healthy individual monocytes are typically between 0 and 10%, but are very often higher in someone receiving chemo and steroids. It means the bone marrow is recovering – and working. Usually within a few days of seeing a high number of moncytes the anc (absolute neutrophil count) will recover.
Hopefully he will shake off his sniffles in the next day or so because I have convinced him to come to the Spa with my friend, Sara and I on Saturday. He desperately needs his hair tidied up but since losing it all to chemo he has become rather phobic of hairdressers. His hair is still very dry, thin and unruly due to the chemo and he looks like he’s been dragged through a hedge backwards. Anyway I told him it was either a shearing at Sports Clips or a luxury cut and style at the Spa. After a long discussion on where the prettiest hair ‘cutters’ worked, he picked the Spa. He also managed to negotiate a trip to Waffle House on the way back. GROSS!
Also on Saturday (at 8am!!!! Ugg) we have to be at the Ice Sports Forum for the Fall Hockey League semi-finals. Derry’s team made it through. Cool huh?! Not only that but they went through in 1st place. If his team wins they will play again at 7pm in the final. I bet if I give him a handful of Scott’s steroids his muscles and hormones will go into overdrive and he’ll fly across the ice like Gretzky on speed. Such a cunning plan.

That’s it for now, I feel like I have some sort of fungus growing in my throat and its doing my head in. Gonna go lie down.

Our pretty kitty is growing up->

2009-02-05T09:41:00.005-05:00

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

2009-02-03T20:35:00.002-05:00

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