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.

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.

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!

ENVY.

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.

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 ...

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.

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"

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

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.

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

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.

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 ...

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.

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

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 :)

http://www.eternalmoonwalk.com/

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 ...