Scott & Sunny

Scott & Sunny

Thursday, January 29, 2009

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

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

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

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

Tuesday, January 27, 2009

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

Happy Birthday my bonny lad, my Sunshine!

Sunday, January 25, 2009

Two Years

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

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

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

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

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

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

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

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

Thursday, January 22, 2009

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

Wednesday, January 21, 2009

Tuesday, January 20, 2009

I don't want Thursday to come this week at all. I just want to scoop up little Scott and carry him off to a place, far far away. Away from the noise, the chaos and the doctors.
Sadly though, I am a coward, Thursday will come and we will go to clinic.
Today Scott and I watched the inauguration of President Obama. I'm not much into pomp and ceremony, and I have been called a "commie" more times than I can remember, but today was an incredible day - and hell, I'm not even American! Incredible to see the back of Bush (we did a little water boarding in his honour before breakfast - LOL) and even more so, to have a new President who might offer America and the World some common sense at last.
Before I go, a little Derry news. He come home today and told me that he had picked his electives for next year ... culinary and French!!!! I was, and still am, gobsmacked. I have been pushing for him to take French for a while now, a second language is vital and French is beautiful to speak, and my goodness, I think he was listening! As for culinary, when I asked why he has never shown an ounce of interest in the kitchen before he replied, "its because you dont cook, you just open cans". Well dang, that's me told! Culinary and French and a European passport ... wow ... that's a lot of doors I hear opening. Mind you, he did insist that he only took these electives as 'sniper training' wasnt on the list of options.

Thursday, January 15, 2009

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

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

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

Tuesday, January 13, 2009

Why must dudes do this?

Which reminds me,
incredible blog but not for the faint of heart! Be warned mother.

Sunday, January 11, 2009

A Golden Globe for Heath.

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

Its been a peaceful and incredibly boring weekend, just the way we like it! So, not much to report on really. Scott is feeling crummy but with the help of his friends Pepito Bismol and Ben A. Dryl he has crawled a little closer to the finish line. Derry had hockey yesterday and today and has turned into a puck thug, but anyway, he's loving it and the team are on a winning streak.
Heres a few pictures of the mighty aqualungmyfriend (who is such a GOOD CAT) and the boys ...
(oh and sometimes, just for fun, he cackles and disappears into thin air - weird!)

Thursday, January 8, 2009

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

Thursday, January 1, 2009

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

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