Fay, Fay ... Go Away!

This could, and probably will, become a hurricane and it could hit us. Eeeeeek!
I have just learned that Derry's new school is actually a special-needs shelter with generators and nursing care, but wether Scott would qualify or not I'm not sure. I was told last year that he would be taken into the hospital were we to fall in the direct line of a hurricane, Im not too sure if that would be the case now that he is not in the early stages on treatment.
I guess we'd best go and do some supply shopping tomorrow. If there is anything left to buy. Damn, this might get a bit scary.

Firing up the Kanzius Machine...

Could a non-medical, non-scientific dude really have stumbled across the most exciting technology ever?? Google 'Kanzius' if you have time. Phase 1 trials have been promising and it seems he is being taken very seriously now.

From the Eerie Times...

Device to treat blood of local cancer patients
Published: July 17. 2008 12:06PM
Local cancer patients will have their blood samples treated with John Kanzius’ radio-frequency device as part of a research project that could begin as early as Friday.Samples will be taken from Regional Cancer Center patients who have cancers of the blood, Kanzius said. Those samples will be sent to his Millcreek Township lab at Industrial Sales and Manufacturing, Inc., and placed in his experimental device to see if it kills the cancer cells and leaves healthy cells unharmed.“It’s not every day that the Erie community gets a chance to participate in a novel treatment that has so much potential,” Kanzius said.The project is an agreement among Kanzius, Hamot Medical Center, Saint Vincent Health Center, the RCC and Associated Clinical Laboratories. Results will be sent to M.D. Anderson Cancer Center in Houston, which is conducting research on Kanzius’ device.No humans will be treated with the device at this point, only their blood samples. Human trials won’t begin for at least another 18 months, Kanzius said.—David Bruce

Clinic went well yesterday with a strong anc of 2400, hgb 12.4 and platelets were at 272. Like I said in an earlier post his anc has been consistently high lately (low for a regular dude tho!) so I asked if he would be increased again next week and was told that he probably wouldn’t. The nurse had been looking at his protocol, as she was expecting an increase too, but it seems he is already on the highest doses possible.
This is not really very good as we want to keep the marrow suppressed. I did however mention that maybe it is time we switched him from Pentadamine back to Bactrim. It is possible that the Bactrim could lower his counts, nudging them a little closer to where they should be. The nurse thinks it is worth trying and is going to run it past the doctor. So we’ll see. Next week is going to be a bitch and I am dreading it. If I can get an okay to stop Pentadamine then its one less thing to worry about.
Here are a few photos of Scott with his honey, Nurse Vikki. He looks miserable as hell but who can blame him, IV methotrexatate is hardly something to get excited about.

Today we had a visit from two wonderful volunteers from Make-A-Wish. They were so sweet and kind and talked with Scott about how they can make his dreams come true. I will write more about this in the coming weeks but will keep it a surprise for now. Here’s Scotty, looking a wee bit happier, with his Fairy Godmothers …

The oncology clinic sessions, part 1

Just another brick in the wall.

Last night was open house at Derry’s new school. He will be starting Riverview High School on Monday. He is nervous it is obvious, over the last week or so you can see him becoming quieter and a little anxious looking. I am dreading it. It’s hard to believe my baby is going to high school; it only seems like yesterday since he was the cutest, the blondest, the most adorable little cherub at playgroup and nursery. Just a little bundle of loveliness. Now he is going to damn high school with spotty little nerds and girls in short shorts and rings through the belly buttons. UG! Why oh why must time insist on marching on?
So anyhow, off to open house we trotted. Unfortunately David couldn’t make it as his building seemed to think it was on fire. It wasn’t, but that didn’t stop the alarm bells or fire engines!!
First there was a lecture from the Principal about behavior, cell phones and the dress code, that sort of thing. It seems incredible to me that the kids don’t have to wear a uniform, not very British at all, but then again I must remember, ‘when in Rome …’ I guess I should be grateful for having boys, Derry is happy with a pair of ratty old shorts and a Metallica t-shirt, not very school-ish but not all that expensive either! Neither do I have to worry about his cleavage being on show or that he is wearing too much make-up. Hurrah for little boys! So the Principal rambled on, he actually seemed like a decent sort of dude, and is rightfully proud of his ‘tight-ship’. Hopefully he wasn’t just saying what he thought parents wanted to hear and that he does maintain these standards. David and I are quite jaded as the last seemingly great Magnet school that Derry attended was a damn joke and the Principal did nothing but pander to the needs of the delinquents and trouble makers.
Before the Principal finished he mentioned God and encouraged us to pray for the school. Scott almost had a fit and started whispering loudly about the separation of church and state. Derry just looked incredibly worried. I glanced around the auditorium, saw I was vastly outnumbered and sank into my chair.
So, next it was visitation with the teachers. At first we were a little overwhelmed at the size of the school, and it seemed too big and imposing for my little boy, too many miles to walk between classes, too many scary teachers, but we found our groove and dug it. It’s not so bad, the teachers seemed like teachers and not nicey-nicey social workers, the gym was beautiful, there are palm trees and benches everywhere, no graffiti, no litter or little wads of chewing gum stuck all over the place, yeah it was okay. We also learned that Riverview have a decent hockey team so hopefully Derry will be able to play for them one day.
Derry’s school day will be: English Honors, Physical Science Honors, Advanced Reading, American Government Honors, Algebra, Gym, and Computing. The same classes, day in and day out for the next year.
I just hope that his time at Riverview will be wonderful, full or fun, great friends and pretty girls, and who knows; maybe he will even learn something.

Now Im off to wake up the boys and get ready for clinic.

Will have to get me some methadone!!

Researchers in Germany have discovered that methadone, an agent used to break addiction to opioid drugs, has surprising killing power against leukemia cells, including treatment resistant forms of the cancer.
Their laboratory study, published in the August 1 issue of Cancer Research, a journal of the American Association for Cancer Research, suggests that methadone holds promise as a new therapy for leukemia, especially in patients whose cancer no longer responds to chemotherapy and radiation. "Methadone kills sensitive leukemia cells and also breaks treatment resistance, but without any toxic effects on non-leukemic blood cells," said the study's senior author, Claudia Friesen, Ph.D., of the Institute of Legal Medicine at the University Ulm. "We find this very exciting, because once conventional treatments have failed a patient, which occurs in old and also in young patients, they have no other options."
Methadone, developed in Germany in the 1930s, is a low cost agent that acts on opioid receptors, and thus is used as an opioid substitute to treat addiction. Scientists have found that opioid receptors also exist on the surface of some cancer cells for reasons that are not understood. One research group tested the agent in human lung cancer cell lines and found that it can induce cell death. In this study, Friesen and her colleagues tested methadone in leukemia cells in laboratory culture because this cancer also expresses the opioid receptor. Theirs is the first study to look at use of the agent in leukemia, specifically in lymphoblastic leukemia T-cell lines and human myeloid leukemia cell lines. They found that methadone was as effective as standard chemotherapies and radiation treatments against non-resistant leukemia cells, and that non-leukemic peripheral blood lymphocytes survived after methadone treatment. To their surprise, they found that methadone also effectively killed leukemia that was resistant to multiple chemotherapies and to radiation. Probing the mechanism of methadone's action, the researchers found that it activates the mitochondrial pathway within leukemia cells, which activates enzymes called caspases that prompt a cell into apoptosis, also known as programmed cell death. Chemotherapy drugs use the same approach, but methadone activated caspases in sensitive leukemia cells, and also reversed deficient activation of caspases in resistant leukemia cells. Friesen said the research team is beginning to study methadone treatment in animal models of human leukemia, and she also says that other cancers might be suitable for treatment with the agent.
In this study, the single doses used to kill leukemia cells were greater than doses used to treat opioid addiction, but the researchers have since found that they can use a daily low dose of methadone to achieve the same effect. Friesen adds that while methadone can, itself, become addictive, that addiction is much easier to break compared to addiction to true opioids. "Addiction shouldn't be an unsolvable problem if methadone is ever used as an anti-cancer therapy," she said.

Scott's counts yesterday were fine. Hooray! His anc was close to 5000 (steroid induced), his wbc and hgb were within normal ranges and his platelets were at 282, a nice jump from last week and pleased me very much.
Next week is methotrexate only, the week after that (if counts okay) will be a anaesthesia & a lumbar puncture with chemo, vincristine, steroids and pentadamine. He does not do anaesthesia well and the lumbar puncture leads to pain in his back for about a week but it has to be done and we want it to be done. It still sucks though.
Anyhow, just hoping that the next two weeks will be good and that we can get Scott out and about a little more than of late. It has been two months since his dad died and his mood since then has been pretty bleak, he clings more and more to the couch (and to me) every day. We all have to try harder to climb out of this pit.
I posted a wee while back about his hair coming out again ... well perhaps it isnt ... I'm not too sure. I thought he was losing it because he called me to his bed one night and said, rather unhappily, "hey, look at this!", then proceeded to pull three big chunks of his hair out!! I tried and none came out. He told me that I wasn't pulling hard enough, then grabbed at it again and hey presto, more hair in his hand. So I dunno, maybe it is weak, maybe mine would come out too if he yanked on it so hard, maybe it is about to fall out. We'll see. However his hair is a mess and this weekend I want to get him sheared a little. Its not just the scragginess but the chemo is in his hair, it is dry, it feels horrible, like a cheap carpet, it needs to be cut. He is mad at me, but so be it.
Have a nice weekend and thanks for checking in.

Thank goodness, today was perfect. After the last week of torment from the vincristine and steroids we were dreading how Scott’s big day was going to turn out. He was a little ropey this morning and needed his beloved codeine (thankfully this had kicked in just before Kristyn called!) and about an hour ago his dinner backfired on him, but apart from that he was in great spirits.

A huge thank you to Angel Laura for her big box of goodies and poems. Scott just loved every gift and every poem and is still amazed by the kindness of someone whom he has never even met. So much time and love went into your ‘special box for Scott’ and we are truly humbled. Also thank you to Angel Dave for your constant support and for everything you do. Thank you to Mum, Eric, Grand momma and Papa, Grand nana, Lorna, Carolyn, Ken and Angel Dave for the beautiful cards you sent. The cards were great but Scott especially loved all that cold, hard, wonderful cash. Again, a big thank you to Kristyn, for calling and for making Scott feel so special.


Derry too was awesome today. I am still a little shocked. He wrote out a card this morning to give to his brother, I was just expecting him to simply write, ‘from Derry’ but no, he wrote out a little poem, it even rhymed and hinted at the fact that maybe he didn’t think Scott was so bad after all.

Scott’s day was filled with video games, air soft guns and probably his favorite gift, a harmonica. After presents and cake, holes started burning in Scotts pockets so we did a little shopping too … for ammo, holsters, targets, guy kind of stuff. This evening we shot up the yard and later he treated us to a harmonica rendition of ‘Merrily we roll along’; he even printed up tickets, calling himself Boxcar Skittles!

I'll leave you with a few photos, I am shattered and we have clinic tomorrow. Thanks again to all who made Scotts birthday a special one.

Being spoiled rotten by Angel Laura!! ...

The birthday boy. As you can see the steroid-induced chipmunk look is in full swing ...

Reading his birthday card from Derry...

WOW! ...

And some more birthday loveliness...

Scotty on his birthday last year. Still struggling through consolidation, radiation and shingles and with a blood clot beginning to form in his brain. I just desperately hope we keep moving forwards and this time next year he will be off treatment, starting to believe in a life without cancer and that we will be celebrating the start of him becoming a teenager and the joys (LOL) that it will bring!

My 'wonderwall' is 12!!
There is too lots of excitement and much to be done right now but I will write more and post some photos later.
UPDATE!!! Scott just had a phone call from Kristyn from TAPS (aka Ghost Hunters) to wish him a 'Happy Birthday'. How cool is that? He was, and still is, completely gobsmacked, very giggly and totally thrilled. Thank you Kristyn. :)

Bombed

Scott has become fascinated with this video. He even seems to understand it.
"Curiouser and curiouser", said Alice. And mum.

vincristine sucks

I was referred to this study on 6mp today and was staggered at the different outcomes between children taking it in the morning versus at night. We were always told to give it to Scott at night, which we do, but I often wondered why. Now I know, the relapse risk is 2 and a half times greater if the drug is given during the day when the child is active. We have very little traffic here from other ALL parents but we do have some, and for that reason I decided to post it so these families are aware of how crucial timing is when giving this drug. It would seem that later is definately better and when the child is at rest. Whilst parents are told to 'give at night', not everyone does or understands the reasoning behind the advice. 6mp is a leukemia 'wonder drug', but I had no idea how beneficial it was until I saw this...
nb. this study relates to non-b-cell so included in this study would have been pre-b, pro-b and t-cell patients.


Section of Clinical Hematology and Oncology, Juliane Marie Center, University Hospital, Copenhagen, Denmark.
PURPOSE: To study the risk of non-B-cell acute lymphoblastic leukemia (ALL) relapse in relation to the routines of administration of oral methotrexate (MTX) and 6-mercaptopurine (6MP) and to the erythrocyte (E) levels of the intracellular cytotoxic metabolites, that is, MTX polyglutamates and 6-thioguanine nucleotides (E-MTX and E-6TGN). PATIENTS AND METHODS: E-MTX and E-6TGN levels were measured at least three times (medians, eight and nine) in 294 children with non-B-cell ALL during oral MTX and 6MP therapy. For each patient, we registered (a) the individual circadian schedule of drug administration and (b) the coadministration of food, and (c) calculated a mean (m) of all E-MTX and E-6TGN measurements and (d) the product of mE-MTX and mE-6TGN (mE-MTX*6TGN), due to their synergistic action. RESULTS: A total of 42 patients were on a morning schedule, 219 were on an evening schedule, and 33 had miscellaneous routines. A total of 149 patients took the drugs with meals, 106 took the drugs between meals, and 39 had varying routines. With a median follow-up of 78 months, ALL has recurred in 66 patients. The patients on an evening schedule had a superior outcome [probability of event-free survival (pEFS) = 0.82 +/- 0.03 vs. 0.57 +/- 0.08; p = 0.0002], whereas the coadministration of food did not significantly influence outcome. Patients with a mE-MTX*6TGN < 813 [product of median mE-MTX (4.7 nmol/mmol Hb) and mE-6TGN (173 nmol/mmol Hb)] had an inferior outcome (pEFS = 0.70 +/- 0.04 vs. 0.85 +/- 0.03; p = 0.003), even if only patients on an evening schedule were analyzed. Thus, 109 patients on the MTX/6MP evening schedule with an mE-MTX*6TGN < or = 813 (nmol/mmol Hb)2 had a pEFS of 0.89 +/- 0.03 and a probability of continuous hematopoietic remission of 0.91 +/- 0.03. CONCLUSIONS: An evening schedule should be recommended for oral MTX/6MP maintenance therapy. The value of individual dose adjustments by E-MTX and E-6TGN remains to be determined in prospective randomized trials.

Scott has cried pretty much all morning. The pain is very bad in his back and starting to take hold in his jaw too. The tylenol w/codeine works for only an hour or two and I must give at least 4 to 5 hours between doses. It is unbelievably distressing to not be able to take his pain away, to see him clock-watching, waiting for the next dose of short blissful relief.
I am kind of mad today too. I just learned (from a leukemia forum) that the reason for his tummy issues could very well be due to the pentamadine he takes monthly to prevent infection in his lungs. I am mad that I didnt figure it out myself but pissed too that no one at hospital, after me raising it several times, made the link. It may well be something Scott simply has to deal with since he needs this treatment, but I have been worrying myself silly as to what the cause of his problems could be. I will mention it next week and possibly ask about reverting to Bactrim. Dapsone is out of the question as he developed methaemoglobinemia, a very dangerous condition.
I am also angry that whilst this is the supposed "easier" phase of treatment, it has not turned out that way for Scott. I can look back at photos from last year and see a very sickly looking child with a white face and bald head, he looked pitiful. Yet he never had the pain then that he does now, nor the constant diarrhea. The reason for my anger is not self pity but that he is expected to go to school or at least be staying on track as any normal healthy homeschooled child. Basically as soon as homebound was withdrawn it was a case of "off you go now, get on with it". There is no way in hell Scott is capable of going to school so this was dumped on us. We are NOT educators yet we have no choice and it scares the hell out of me as we are probably making a complete arse out of teaching him. On good days we get some work done but on the days like today (which is 1/3 of the time) he can barely string a coherent sentence together let alone write an essay on the Industrial Revolution. A little help would have been appreciated.

Dont get me wrong, I do love our hospital. The doctors and nurses are incredible, all adding different talents into the collective pool. One of the doctors in particular is a genius and has my utmost respect. I think I just need a lifeline right now. I am sinking.

Well we have started another round of the good stuff and already the pain is kicking in. Oh how I HATE vincistine. Scotts counts were high again today at 2245, and as I suspected, they are planning on yet another chemo increase if they remain that way over the next few weeks. I believe he is close to the upper limit on how much they are allowed to give. Whilst I understand the need to keep the anc low it is upsetting that he has to be pounded by additional chemo. All these toxic drugs can have lifelong effects and so each increase raises my anxiety.

His platelets took a hammering which ofcourse has spooked the hell out of me. The wonderful Nurse Vikki (again!!) told me to look into her eyes whilst she spelled out - D O N O T W O R R Y!!!! If only it were that easy.

I was SO relieved to recieve his x-ray results - no signs of anything abnormal. This is very, very good and means the steroids have not caused bone density damage. It still may happen but for now, all is well.

So we have another steroid/vincristine bitch of a week ahead and I am thankful. Unfortunately the worst day of pain will fall on Scott's birthday. We'll just have to do our very best to make it perfect. Stick the cancer in a drawer out of site and refuse to mentions it's name. It still seems surreal. My baby has cancer?

Thanks for checking in and have a great weekend.

Oh and a ps for Ben ... thanks for following Scott's progress and no, he hasnt been prescribed anything to help his bones. I do give him tums, yoghurt and as much milk as he will tolerate (which is not a lot) almost every day, for the calcium benefits. I hope that this will be sufficient. I will be mentioning this to the docs though. Thanks for your advice. :)

One more ps for April ... my emails to you are bouncing back and I think that yours to me are being blocked. I may regret doing this on the internet but here is my phone number - . Call or text when you get a chance. Hope Logan is doing good and we'll see you soon. :)

Last ps I promise ... It was on the BBC today that childhood cancer survivors are more likely to become smokers, I guess that whilst this is sad it is also understandable and no big shock. It is becoming clear to me now how much Scott is starting to become rather blase where medicines are concerned and also how he relies on drugs to keep him stable, drugs such as ativan, paxil (which doesnt seem to work all that well) and tylenol/codeine. This is a worry. Whilst he is incredibly clever and sensible I can absolutely see how he could/survivors may feel a pull towards risky behaviour. Perhaps due to long term depression or stress or maybe because you have an increased sense of being "untouchable" or invincible. Something most young people feel, yet possibly amplified among survivors. You kicked cancer's arse the first time and if need be, could do it again. When you spend 2-3 years being pumped full of toxins and "stuff to make you feel a little better" whats a little cigarette/joint/cocaine between friends??!! Whats the next big thrill??!! Or maybe, what is simply going to keep you stable? Or, what is going to take away the fear of it returning? If anyone has an 'addict' gene it is most definately Scott. I will be like a damn hawk. The doctors already call me 'hover-mother', well they aint seen nothing yet!! Hopefully my training and years as a youth and special needs worker will stand me in good stead. I hope so!! I think I may need ALL the help I can get.

Scott feels horrible today. He refused to get dressed, brush his hair or teeth, he just wants to lay in bed, alone and in peace. The only smile came when he tucked into an order of Domino's garlic bread (which faded fast as soon as it his his stomach). He also has a headache which sent my worry-meter sky high and threw me spiralling towards all that is bad ... xanax, coffee, chocolate and cigarettes.
Tomorrow is clinic day and if all looks good it will be the start of round 25 and another lovely week of misery. I know we have said this so many times but predictable misery is far, far better than the alternative.

"I choose chaos."

Today we went to see The Dark Knight and it was incredible, probably the best movie I have ever seen and all because of Heath Ledger and his portrayal of The Joker. The boys definitely agree, The Joker rocks!! Scott was just saying a moment ago what a madman he is, but that he made him laugh and would make a great friend!! Huh?!! The Joker wants for nothing; he has no plan and is the perfect amoral villain whose only goal is chaos and mayhem. His appearance is crazy and his mannerisms strange. We all watched, mesmerized and shocked. A very slick movie indeed and if I could, I would go see it again tomorrow... and the day after that.

Thank you Sherry for a great afternoon.

Was teaching Scott a little about Lowry earlier (he still prefers Banksy sadly) and stumbled upon this little gem...

I think the above photo describes pretty well how he is feeling although it was taken when he was in a good mood, and at a time when he was almost mocking himself. Scott is having the most incredible mood swings, one moment he is his normal, loud, happy and cheeky self, the next he is in despair. A lot of his misery is emotional and psychological. He is at his wits end dealing with leukemia, with the pain from the drugs, with the nausea, being cooped up at home and unable to play in the dirt with his friends. He said recently that cancer has stolen his childhood. I tried to say all the right things but we are all so depressed with the situation and it’s hard to believe that things will one day be back to normal. This has only been going on for 18 months, not long really, but life before cancer seems such a distant memory. Those carefree days are a blur. I look at old photos and it is like looking at a different family. Will we always carry that ‘deer in the headlights’ look or will it fade? Leukemia treatment is so long and arduous (and that’s IF all goes to plan!), it’s a real tough bitch to deal with. Someone recently said that their personal cancer “was a cakewalk” compared with what their child had to deal with. Yes many survive, but to get there is a very long road.

Scott is also distraught at losing his dad. Understandably so. He was doing okay for a little while but lately it is weighing heavily on his mind and heart. He has dreams of Callum, good and happy dreams where all is well, then he wakes up … Dad is gone, Grandad is gone, friends are gone, and he has to get up, face the cold hard facts and endure another day of cancer.

He has also started swearing. Oh my, just where could he have gotten that from?!! Every now and then he’ll throw a real humdinger into the mix. I’m sure it all relates to his anger and depression and I can’t say that its number 1 on my priority list. In fact it’s kind of funny to see him looking all angelic and cute, sitting at the counter doing a Pokemon jigsaw puzzle and suddenly let rip with words that would make a fish wife blush. I’m exaggerating a little, but you get my point. Maybe it’s genetic. The Scottish language is mostly curse words anyway. So much so that you don’t even hear them after a while. Oh how I miss it. Americans are so very polite... except for when they are shooting each other, or firing up the electric chair, "shock and awe"-ing, and such things.

One step forward, three weeks back ...

We have been in Florida for nearly 4 years now and finally it is starting to dawn on Scott that flip-flops are a great invention. However he still hasn’t got the hang of how to walk in them and so today, within seconds of walking into clinic, he tumbled head over heels and twisted, fractured or broke his ankle. The jury is still out but he was sent for x-rays and I’m guessing the fact that they haven’t called me yet with results mean nothing major is showing up. It was, and still is, causing him a lot of pain though and the doc was keen to do x-rays as his bones could be in a bad way after all the treatment he has received. Steroids can lead to a loss of bone density; basically his bones could resemble those of a 60 year old woman! The oncologist will let me know next week if his bones have been affected. Obviously we are hoping that this is not the case.

As for his lovely blood, well all looked good again so he downed another shot of methotrexate. His anc was still a little high at 1750 which may mean yet another chemo increase in weeks to come. This would not be good for his stomach but would pack a little extra punch against any remaining leukemia cells. His platelets were normal at 266. This is the number I keep a very close eye on as platelets are very often the first to drop when something sinister is going on.

I was kind of disheartened to learn that I am ahead of myself on our protocol. I was only off by three weeks but three weeks is a long damn time when you are living this nightmare. I just want to get to the end and start putting some distance between us and cancer. Our obvious fear is the ‘r’ word. Half of all t-cell (POG 9404) relapses occur before week 62 (we are at 72 but it was been 78 weeks since diagnosis – yes today marks 18 months since we got hit by the bloody cancer bullet – a day that I have never yet written about and probably never will) the rest occurring from week 63 to several years later. Having said that, relapse would be unusual after a remission of three years. That is still 80 weeks from now though, a long way off. Yet even when we do finally stumble down in relief and mercy at the hallowed gates of remission, I doubt I will find true comfort there. The worry is here to stay.

I wanted to end on a happy thought but couldn’t think of one so instead I’ll just say that it seems poor Scotty may be about to lose his hair again. No big deal in the grand scheme of things but Scott is obviously scunnered about it. Me too. It’s so nice being able to leave the house lately and not have people stop and stare or give looks of pity. More importantly I can look at him now and not see cancer. Baldness is just so in your face.



Thanks for stopping by and checking on my boy.

Christian the Lion ~