Scott & Sunny

Scott & Sunny

Saturday, August 30, 2008

I wanted to second Stephanie's "thank you" to Sherry for getting Scott and Stephanie around to clinic on Thursday. That was a major worry and huge relief! You are a true gem.

Things were that way as I was out of town for a few days. Officially for some annual work meetings we have in Atlanta. It was also timed so I could be in town up there for my mother's heart surgery. It was originally scheduled for Wednesday, but got postponed to Friday due to an inordinate amount of "emergency" cases piling into the hospital on Tuesday. Obviously that worked on my mom's nerves, which were at an end anyway.

So then Thursday evening rolls around - and yet another call for postponement. This time until next Wednesday morning. So now there are no nerves left with her, and one can hardly blame her.

I decided to not change my flight back yesterday, and flew back home as scheduled. Not the simplest of decisions. Now we wait for her surgery on Wednesday. I hope there are no more delays. She's been dealing with the stress of waiting for such a few months now actually, and just wants to proceed.

I've gotten to beyond the point of being shocked by all of the medical issues around us. It just seems there is an endless stream of problems for everyone in our circle. I'm weary of it. I think it has all just numbed me into a state of "lack of shock". We have all heard so much about so many around us, our brains have stopped processing from an emotional state. We're likely not very healthy in the mental perspective. But we weren't exactly the most sane folks before any of this anyway.

Scott is feeling better today, and it appears most of his cyclical pain has faded away. He seemed pretty upbeat most of the day, even though it was grey and rainy all day. Probably will be that way all weekend, thanks to Gustav. It was nice to see him chipper and happy when I got home last night. The kid has one of the biggest hearts I've ever seen and we keep hoping this ordeal won't change that part of him. Hopefully he'll be up for a short trip somewhere tomorrow.

Speaking of Gustav - seems it is headed just west of where Katrina hit 3 years ago. My oldest brother still lives on the coast of Mississippi, and I hope he heeds and gets out of the way.

Friday, August 29, 2008

My apologies for not updating the blog after clinic yesterday. I did write a post in the early hours of this morning, full of metaphors and imagery and shit, but it made me sound like a big pansy so I deleted it. All that poncing around with words just isn’t me.

On to the main man. His counts were exactly where they should be. The bone marrow left-shift shifted right. Hurray and hurrah and a tra-la-la-la-la.

I would like to say a big thank you to Sherry for helping us out yesterday. We are SO grateful.

Thursday, August 28, 2008

Still in love with Donnie

Still homesick.
And to top it all off, it is bloody Thursday.

Monday, August 25, 2008

Teaching evolution in Florida

A breath of fresh air at last and worth taking the time to read ...

Saturday, August 23, 2008

We are in the midst of the squall and it sure aint pretty. Either the pain gets worse each cycle or, little by little, the pain medication is losing its punch. This morning he was begging us to go out and hunt him down some marijuana. And yeah, I do believe it would be the perfect drug for him at this time; however it is obviously out of the question. I did raise the subject of pain management at clinic on Thursday but no-one is willing to give him anything stronger. Apparently this is quite normal; doctors are very cautious and rarely will they prescribe strong opiates to children. It is getting so bad that I am now considering Neurontin. This is quite an effective drug used to treat neuropathy and is often used on patients who have undergone amputations but still have pain where the limb used to be. We were offered this several months ago but it would mean 9 pills daily, no good for a child who cannot swallow pills!

I am also a mess. A pathetic puddle on the floor in fact. The funky cells seen in his last blood work are preying on my mind. I am scouring the internet for more information but none of it really relates to our situation. These cells (poik, aniso, polychrom, metamyelo, atypical lymphocytes) should not be in the peripheral blood and the fact that they are is cause for concern. I have been reading about the ‘left shift’ but nowhere does it say “immature red and/or white cells in the peripheral blood are observed frequently in patients undergoing chemotherapy for cancers of the bone marrow” … I wish it would.

I haven’t mentioned Derry or his hockey lately but that’s because he stepped back from it after his dad died. He had no interest whatsoever. Well today he was back on the ice, trying out for the fall season. I was at home with Scott but according to David you would never know he hadn’t played in over 3 months. A comment from one of the assessors was overheard, “wow that kid sure is a freight train out there!” Yay. Derry is a freight train! He has further assessments tomorrow and hopefully in a couple of weeks we’ll know if he made it on to a team or not. Fingers crossed.

David is still suffering but at least we now know why. He has a cyst under the muscle in his shoulder!! Yikes. The doctor doesn’t want to try to remove it as it could be tricky so instead David has been ordered to attend physical therapy 3 times a week. Apparently the therapy can induce the cyst to shrink! David is so not chuffed. He just wants it gone.

Life don’t work like that though.

Thursday, August 21, 2008

ALL and Stem Cell Transplant survivor, Maarten van der Weijden

No Evidence of Disease!!
snipped from the Telegraph:
Dutch swimmer Maarten van der Weijden skirted just inside the final red buoy to grab gold in the men's 10-kilometer open water race Thursday, completing a comeback after recovering from leukemia.
Van der Weijden won a three-way sprint in the inaugural event with a better-angled finish under a steady rain.
"I think the leukemia taught me to think step by step," Van der Weijden said. "When you're laying in the hospital bed and feeling so much pain and feeling so tired, you don't want to think about next week or next month, you're only thinking about the next hour.
"You just be patient. You lay in your bed and just wait. It's almost the same strategy I've used here, to stay in the pack, to be patient, and stay easy just waiting for your chance."
Hurray, today is over. Well the worst bits anyway.
We were at clinic early to get Scotty checked over and make sure he is well enough for anesthesia and chemo. His counts were 1750, and platelets 232. Both are down from last week but I won’t stress. He also had atypical lymphocytes and a few other ‘abnormals” which I questioned nurse Bob and Dr. Tebbi about. Neither was concerned and I was told that in t-cell they see quite a lot of this, perhaps in pre-b it would be a red flag, but unless there were considerable numbers seen then I shouldn’t panic. I also took the opportunity to quiz Dr Tebbi about all his other blood work and he seemed happy with everything. He also said that chemo wouldn’t be increased as Scott was already receiving as large a dose as is recommended.
Before the spinal tap with chemo Scott had pentadamine. The doctors are keen to keep him on this as they believe he is tolerating it well and it protects well against pneumonia. So much for me thinking bactrim would be better and help with his high counts. We had a real bitch of a respitory nurse and she nearly got my fingernails straight through her eyeballs. She tried to insist that I leave the room when Scott had his treatment and told me she would also be leaving the room as pentadamine made her itch!! Daft cow. No, I will not leave Scott alone unless I am perfectly confident he is with someone with experience and with someone he trusts. She also should not leave the room. She should be monitoring him and making sure he is using the face mask correctly and breathing the medicine deep into his lungs. I told her that I was advised that a nurse should be there at all times and that I also would not be leaving the room. She again said we should both leave. I helped myself to a mask and sat down. She rattled on and on but in the end walked out of the room. Fortunately I have done this enough times now to know how it works. I was fizzing though.
Then we went to the day hospital and Scott had his spinal with chemo. Dr Tebbi did the procedure so that pleased me. He is awesome. His spinal fluid, which is drawn out, before chemo can be given, looked clear and disease free. However this is not fool-proof, leukemic cells could still be found in fluid which looks healthy. Obviously this would be devastating and hopefully this will not be the case.
Next, back to the clinic and his vincristine. By then Scott was a bit of a mess and needed a wheelchair. He really doesn’t do anesthetic well, it just seems to stress him out and make him a weepy and very unhappy little man. He also had pain in his back from the spinal. Anyhow, Bob gave him a shot of Tylenol and codeine and within half an hour he was smiling, laughing and drooling.
We are home now and he has had his first 4 steroid pills. 7 more to squeeze in before the end of the day, and ofcourse some 6mp (chemo) at bedtime.
That’s it for now, gotta go clean the house and stuff.
Oh and ps. Derry did finally make it to school. Tuesday was a hurricane day but he made it yesterday and today and so far, so good. Apparently the girls are hot, lunch is good and people don’t walk around with their pants around their knees.

Monday, August 18, 2008

Aaah the first day of High School. How wondrous, what an incredible right of passage. But no, not for us, not for the children of the damned, the doomed ones with hexes on their foreheads.
I have screamed and cursed so much this morning that Scott enquired as to wether I had developed a nasty case of tourettes.

This morning we were all up and excited (I wasn't, I was crying) at Derry starting the school for bigger boys, he was showered and beautiful, he ate breakfast at 6am, he was so ready. Off he trotted to the bus stop (6.35am) in plenty of time for his 6.42am pick-up. At 7.45am he was still there, 12 minutes after school had started. The three other kids waiting with him all buggered off with an older kid in a car, thankfully Derry did not accept a ride. Boy would I have been fuming if he had.

During this time Derry was texting me every 5 minutes to say 'bus still AWOL' and I was frantically trying to contact the transportation department to find out where the bloody hell the bus was. Guess what, the transportation departments one and only phone line was down! I called the county and went ballistic and finally got another number from them, this number was either busy or I was getting "sorry, your call cannot be taken at this time'. I also called the school and was told that they were fielding call after call from parents saying the same thing. Derry then called to say that two women walking past told him their daughters (waiting at a stop further down the road) had given up and gone home.

So, Derry is now home and has missed his first day of school. I have now been trying for 3 hours and still cannot get anyone from transport to answer. The school is fine about it but is in a bit of a panic as they are unsure as to how many children will be able to get home as so many were dropped off by parents expecting a bus ride home but it now seems the drivers will not allow them on the bus without a pass - which many dont have due to yet more incompetancy by the t**t's at transport. We have our pass but no bus!

Upon speaking with the school again it seems that perhaps the bus time has been changed within the last few days. This is all fine and dandy but it would have been nice if they would have told us.


I am madder than I have been in a long time. This should have been a very important day for him, where he learns the ropes along with all the other newbies instead he is going to be thrown in at the deep end.

What a mess.

Saturday, August 16, 2008

Stupid Weather

Yup, we're probably gonna get some impact from a hurricane sometime Tuesday or Wednesday. That should add to the list of things that have come down our path. The way our luck is going, it'll probably blow away the hospital, the house and everything else we rely on. Not to mention it carries the same name as my dad's twin sister.

I've planted clover in place of the grass, just in the hopes of finding one with 4 leaves. Also going to stop by a feed store tomorrow and get some new horseshoes, as the ones we have are all used up it seems.

Fay should make this week, which was gonna be busy, even more so. Derry is to start high school Monday. Scott has a full day of clinic Thursday, including his breathing treatment and getting knocked out for his latest spinal tap. I have a revisit to the orthopaedic doc. I went for neverending pain in my knees and feet, which felt like electric shocks. Basically was told I'd A) developed neuropathy in them as a side effect from Zithromax, which I took for a whole 3 days in early April and it made me unable to move my hands. Killed the sinus infection, but know I walk like I'm 80. B) was told I needed an MRI of my right shoulder, as the doc would wager my rotator cuff is torn (and that I've taken anti-inflammatories too much for it). and C) that I had a screwy growth plate my my right tibia, which shocked him my knee hasn't hurt since I was a kid (it's only hurt since I was about 14 actually).

So, on Thursday I'll find out if he's gonna shove a scope in my shoulder, and if I need to add any drugs to the Lyrica he put me on for the neuropathy.

The pharmacy guys love us and smile when we walk in.

The insurance company probably hates us and likely have a hitman looking for us to decrease their costs.

And contemplating the to-do list at work is useless. Depending on tomorrow's storm updates, the whole list may get shoved back and as screwed up as a football bat.

On other fronts, I have to travel next week for a few days. Our annual business meetings for our company are next week. On the exact same day, my mom has to go into the hospital for mitral valve surgery. My dad had the same thing done 11 years ago, and it was no fun. My mom is worried, scared and hated seeing my dad go throught it. She swore then that she could never go through that - now she must.

I'm worried for her. Worried for Scott. Wonder if I'll ever walk normally again. Wonder just how bad this storm will be.

But then I think about all we've been bashed with over the last 18 months. It's too the point where if things go normal and smooth, we'll likely just all go insane.

Or lose our insanity.

Figure that one out.

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

Friday, August 15, 2008

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 …

Thursday, August 14, 2008

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.

Tuesday, August 12, 2008

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.

Friday, August 8, 2008

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.

Wednesday, August 6, 2008

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. :)

Monday, August 4, 2008


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

vincristine sucks

Friday, August 1, 2008

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.