Manda's Memorial Service

Service: Beautiful
Adrian: Epic Fail

I had prepared the following to read, and managed to get through all of about 5 words when my voice switched from unsteady to full-on cry (fortunately Evelyn stepped up and read it in my stead):

One year ago today, our hopes and dreams flew out the window, to be replaced with one hope—one dream: survival. That day began with Amanda’s fierce determination that NOTHING SERIOUS WAS WRONG. Then she nearly collapsed in the shower, and began losing her vision.
One year ago today, I took my wife—very much against her will—to the hospital, where blood tests revealed severe anemia. Late that night a hemotologist gave the first whispery notions of what might be wrong, that nothing simple and mundane lay in her future.
One year ago today, our lives were shattered. How fitting, then, that today we begin to pick up the pieces.
Amanda would not want us to mourn her death, but to celebrate her life. If she saw any of us crying, she’d tell us to stop being so maudlin. She carried a print of the scripture that graces the cover of your programs with her everywhere, and never gave up hope that with the right doctors, the right treatment, and God’s grace, she might yet overcome her disease, and soar on eagle’s wings.
And because of His grace, she has overcome her disease, and is soaring higher than ever eagles dared. And we, her friends, family, and loved-ones, got 354 gifts: days of borrowed time, filled with hugs, rich discussions, insight into what it means to be a mother with terminal disease, and through it all a faithful servant of God.
Her forthright nature and determination to share every element of her treatment have inspired hundreds to donate blood, sign up for bone-marrow donations, become organ donors, and contribute financially to ending this horrible disease.
Amanda did not lay down and let go of her dreams to be with her son. She fought, often against her own sense of prudence, for more time, for new treatments, for life. She wanted Alastair to grow up knowing that she never gave up.
She never abandoned her hobbies, devoting hundreds of hours to a reading competition, to keeping abreast of movies and entertainment news, and making her environs, both in and out of the hospitals, as welcoming and comforting to a little boy as possible. Never did she say, “Woe is me”.
I leave you with a couple of quotes from her blog, ones that I think capture her spirit and grace.
Five days into her first round of chemo, she posted “Yesterday morning was a little rough on this girlie. That nagging, biting fear set in, the one I've managed to keep relatively at bay since being transported to LeukemiaTown. Something compelled me to devour all this printed information on AML that the doctors gave me when I first came, and subsequently I frightened the living bazoobas out of myself.
So I wandered around my room for some time in a weepy daze, contemplating my own mortality. We all gotta go sometime, but it's some hard funky stuff to actually have the possibility that you might very well kick the bucket soon laid out before you like some sort of gruesome buffet. Then I got over myself.”*
Later, in reference to a surprising number of leukemia diagnoses in medical dramas and movies last Spring, she had this to say: “I'm telling you folks; leukemia is the new black. It's the hot disease for the season. What can I say; I've always been ahead of the trend.”

Everyone else spoke very well, and the whole thing lasted just under an hour. I am sorry to everyone I didn't get to speak to, and want to re-iterate my thanks to all who came, all who came back to the house afterward, and all who helped put this beautiful tribute together.

*Ok, so that one was heavily redacted for reading at church.

Grief, Candor, and my Shitty Day

I'll have to remember to delete (or at least heavily redact) this post before Alastair is a teenager...

I've felt, over the last few days, that Amanda's cremation wish is a double-edged sword. On the one hand, she saved me thousands of dollars (sounds cheap, but it was very much her way) in funeral costs. All told, with 10 copies of the death certificate, shipping, and "handling", we paid less than a fifth of what some of the more basic funeral services end up costing. No fancy coffin, no concrete sarcophagus, no digging, no overwrought--and overpriced--flower arrangements lining the aisles of some horrible little chapel. And most importantly: no shipping of intact human remains, which I've been told would have cost a small fortune.

But I've lost something, too. There's no grave. No place where I can go every other weekend and just pour my heart out. No way for me to feel like I'm connecting to my wife verbally, even if just for my own sanity. Her parents are keeping the remains, as we had discussed. I couldn't bear to have them in the house (though I do have those of our first cat).

So all that's really left to me is this blog. We read each other's thoughts, sometimes commenting, but more typically generating a phone call or a late night conversation about whatever we'd posted. Some of the more personal elements that I've found myself exploring lately, I've discovered, are my way of telling her what's going on in the house, with Alastair, and with my life.

I haven't really decided yet, but this might slowly transform, at least while the pain is sharpest, into letters to Amanda. Morbid? Perhaps. Public? Absolutely. I won't be wallowing in self-pity or shopping for sympathy, but some of the writing may become a bit more painfully personal. Keep reading and following, if you'd like, and see how we soldier on.

Starting now.

I finally got around to scheduling Alastair's annual check-up. Last year's was within 2 days of his birthday, this year's not quite within 2 months. Oops. But frankly that was always something you took so much joy in: running the day-to-day elements of the house; keeping on top of what Alastair needed. I know it's a stupid excuse, but I could add the fear of germs to that, if you'd like. Heaven knows we couldn't risk him getting sick at the doctor's office and bringing that shit home to you.

But I got it done, because I'm beginning to realize how important regular check-ups are, and because I promised you I'd take care of him. It was my last promise to you, and I intend to damned well keep it. No: I haven't yet scheduled one for myself, but yes: I probably will soon. And no: not with that that ass-hat Hunley, so pray for strength for me while I pretend to try to look for a new doctor.

Anyway.

Alastair is doing very well. His vision tested less than perfect (20/32), but frankly I think he was bored identifying shapes and just started blurting out whatever he felt like. The heart didn't look much like a heart, any way.

He's in the 50 - 75 percentile for height, and the 75 - 90 for weight, which is consistent with prior check-ups, and he's right on track with his vocabulary and cognitive skills. She asked if he dresses himself yet, which surprised me a little. Maybe we should have let him take a more active roll in his own dressing some time ago. He does a good job helping, and is great with his shoes and jackets, but we've got some ground to make up.

The big news of the day, though, was his BM's, or lack thereof. The night he got back from TX was the night of his last significant BM: just shy of two weeks ago. He's been having sharts (shit-farts) regularly, but nothing big and chunky. His belly felt a little hard and distended, too, and Laura remarked that it felt like poo. So she suggested an enema! Oh, joy! And 3 - 4 months of a mild laxative. Apparently it's not too uncommon in kids his age, so we didn't screw him up any more or less than normal, but let me tell you: I was not prepared.

I managed to convince him, without too much trouble, to lay down with his naked booty up in the air, but he was none too thrilled by my insertion of the "pre-lubricated comfortip." He began sobbing while I squeezed the fluid into him, and gave me the most horrified look when I stood him up to sit on the potty. "Daddy! Why did you do that?!?"

But what came next, for the next 90 minutes, was more than I could have imagined. I frankly don't think he could have passed what came out of him any other way. It was a freakin' tree! He sobbed, he shook, and my oh my did he poop. And we read a library worth of children's books (I think he get's an honorary nod in the Cannonball Read for today's effort).

Twice we tried to get off the pot, and both times poop dribbled out of him onto his legs, the floor, the race-track rug in his room, every single changing-pad cover we have, the monkey towel, and his shirt.

At one point I called Leigh, just so he could hear her voice. She listened to his tears and beat a hasty path to our house, but by the time she arrived, it was all over. His poor little butt continued to ooze all evening (and probably will all night, too), but for the most part, he's done.

Apparently if they hold their poop for a while, the muscles that push it out will weaken, and what was coming out was fluid build-up from above that managed to leak its way around his stool. Yum!

Enough about that. Tim came by and cut down that tree. It finally died, and seemed to have kept pace with your decline almost perfectly. I was amaazed when I heard a chainsaw running out there today. It's a little sad to see it gone, even though it had been dying for the last year. Creepy freakin' tree.

I miss you. I love you. And Alastair said today, for the first time, "I miss my mommy." Then he told me to make you get better. Oh, God: if only I could.

When is Mommy Gonna Get Better?

Tough questions today.

In the first couple of days after getting home, Alastair didn't ask much about where Amanda was. When I first told him that she was gone, he held me and told me to stop crying. He said, "It's ok daddy, you're all right. You don't need to cry." He had a good time, he played, and he got shuffled around a bit.

But then he started asking, and now at least once a day he asks when mommy will be home, when she'll be better, or when he can see her. I've held it together pretty well for this series of questions, answering that mommy's in Heaven with God because she was too sick to stay alive, and that God doesn't like to see us in pain.

To his question of when he can see her, I've told him that he can dream of her any time.

Today, for some reason, he seemed particularly confused and fascinated by all of this, asking at least 3 separate times about her. It's touching, really, to know that after days of silence he's interested in knowing, but it's also heartbreaking to be unable to explain it to him in terms that he can understand.

Maybe that explains why I started sobbing tonight over G&R's "Patience" on the radio ("Shed a tear 'cause I'm missin' you, I'm still alright to smile, Girl, I think about you every day now"). Again he came to me and asked why I was crying, only this time, in addition to the sweetest hug imaginable, he also sought out a tissue box, dug down into it (it was almost empty), and brought me a wad of tissues. He even went so far as to try to wipe away my tears. I love that boy.

But I'm worried about him, too. His sitters, his grandparents, and their friends have all remarked that his play is more aggressive than usual. I seem to recall him being like that before I left for Texas, but I can't be certain.

He pitched a huge fit over getting his hair cut today, and has been a nervous wreck about tomorrow's check-up. I'm not too surprised about that, as the doctors failed to keep mommy alive; he'll probably have an unhealthy fear of medicine for a while to come.

And as for me, I've made some strides around the house. My grandmother lost three husbands (why in the world would you open yourself up to that much potential pain?), and her secret to survival was to detach emotionally from the accumulated stuff and see it as just that: stuff. I've managed to prepare 4 grocery bags worth of donations, mostly in the form of jeans, socks, sports-wear, bras, and slippers.

I threw out all of her medications (except the prescription pain-killers and sleep-aids, 'cause who knows?), gave away her feminine hygiene products, and cleaned out most of her toiletries.

There's no emotional attachment to these things--much harder will be some of her shoes, t-shirts, coats, hats, and dresses. But what has helped was a long-standing problem: this house is completely full. Alastair's closet is half-filled with dresses she hadn't worn since starting Weight Watchers 5 years ago, and every nook and cranny in the house is similarly packed with old clothes, out-of-season clothes, threadbare clothes, and work clothes.

But I'm workin' on a plan to either keep all of her pink accessories or find some fitting way to honor them. There's really no way I can bequeath her pink laptop to my son: he'd get his ass kicked on the first day of school. I also can't part with her pink iPod Nano (with matching earbuds), as it's engraved. But pink running shoes, well that's another story. Maybe a pink time capsule for Alastair to look at years from now? I'm open to suggestions.

My Wife

I have had a lot of trouble over the last few days framing my response to my beautiful wife’s death. Obviously it’s something that is hard to comprehend, but it’s something that has been a long time coming. Amanda and I had no real delusions that she would find a cure in Texas, but what we did hope for was more time. We hoped that she could find treatments that could potentially prolong her relative wellness long enough for science and medicine to overcome her sub-type. Her only fear was of dying in Texas, away from Alastair, her parents, and from me. It sickens me that her worst fear was realized, but I have taken some comfort from the fact that she held her father’s hand as she lost consciousness for the last time.

I have cried. Boy have I ever cried. Seeing her so lifeless in the ICU—hooked to a ventilator but long since gone–was the single most horrible thing I had ever seen in my life, and during the interminable wait for the “comfort care” orders (those that would end her physical life), I was a train-wreck. I couldn’t even take comfort in the presence of her parents. I sat in the hall and watched for the nurse and just sobbed. Two strangers stopped and offered their support, along with Amanda’s nurse. When they told us to come in, that the removal of life-support was complete, I rushed to her side and whispered over and over for her to just rest. I held her hand, I watched her pulse slow from 130 to 30, and I loved her furiously.

I cried for the next hour, left in the room with her body and waiting for the off-shift administrator to come tell us what steps needed to be taken next, and felt completely empty walking back to the room. I cried off and on all the next day, and when I tried to explain to Alastair what it meant that Mommy had died.

I cry a little bit every time he asks me when she’s coming back, and every time I realize some minute aspect of our life-rituals has to change. In the weeks before her death, we finally got Skype working between the house and her hotel in Texas. Every night before bed we would call Mommy on the “computer phone” and pray with her. Tonight he asked if she has her computer phone.

But I’ve been deeply inspired, too. The outpouring of love, both virtual and physical, has been enough to offset a great deal of that pain. Cards have begun to arrive, as well as food, but what has really moved me is reading the online dedications from the Pajiba community. I have read them all, and while I have not been a frequent visitor to the site, I feel like a part of the family. Amanda exposed herself on Pajiba and her blog in ways that most don’t. In fact, she exposed herself in ways that would mortify privacy experts. But we decided from the start that her journey could help others find courage, strength, and healing. We also decided not to pull any punches, as our blogs would stand as a future history, undiluted, of what horrors she would go through. What amazed us both is that so many people actually read those posts. All of them. Her story became a lightning rod of hope and healing energy, and she was soon added to prayer lists the world over. People we’d never met were sending flowers (the first of which, received only 4 days after her initial admission, brought buckets o’ tears), books, movies, music, cards, apple-cakes, clothing, and *ahem* electronic devices. She cherished every single thing she received, and kept a very carefully organized folder of Amazon packing lists to write thank you notes.

I thought at first that I would not be able to read Pajiba’s dedication to Amanda, but the farther I read, the more the tears turned to laughs.

We never dwelt long on the subject of her “final wishes”, but she did outline a few:
1. Cremation. She frequently told me that if I didn’t cremate her, she’d come back to haunt me.
2. A New Orleans style funeral. Ultimately never serious about this one, what she wanted was a dignified sobriety to start off the mourning, but then a party to celebrate her life. Gotcha covered, babe.
3. Alastair to remember his mommy. And we’re going to work awfully hard to make sure that gets handled correctly.

My wife never thought she mattered. She always felt that her lack of an individually exceptional skill meant that she was destined to be forgotten, passed by, and generally ignored. It was an insecurity that she battled right up until those first flowers arrived at St. Mary’s. For your kind words, I thank you. For your love, I am indebted to you. For 15 years with my soul-mate, I am coming to realize there is no response. I feel like my soul has been attacked with a melon-baller, and I imagine that will continue for a long time. And for Alastair, just keep praying. He’s too young to really understand, and fortunately Amanda had already been away for the last month, so there’s no huge and immediate lifestyle change to cause him panic.

I miss her tremendously. She was so smart, witty, and sassy. She was also pigheaded and refused to accept new elements of her disease were actually symptoms. We argued endlessly over whether or not she should tell her doctors about her ear-pains, persistent indigestion, never-ending menstruation, avocado-sized (and shaped) bruises, and finally her leg pain. She refused to be hospitalized more than once when running dangerously high fevers. Hell, I almost had to drag her to the hospital last spring to get this all started, even though she was losing her vision and had nearly collapsed in the shower.

Yet for all of it I was fortunate to have that year with her. Undiagnosed, leukemia can kill within 3 months. She had already been experiencing symptoms for 7!

People have already placed blame for her death on her decision to go to Texas. Please don’t make the mistake of thinking that way. Amanda was fiercely determined to be in control of her destiny, and staying in Richmond meant palliative care. Houston offered hope and possibility. She knew the risks, but she also knew the potential rewards.

And if she had not died Wednesday, her condition would only have gotten worse. The pain and swelling in her feet were from hemostasis, which meant the blood was pooling and no longer flowing properly. We both realized the ultimate outcome of that would be gangrene and amputation, and the doctors later told us that her internal organs would have soon begun shutting down, leaving her without any sense of dignity and trapped in an ever-worsening body. She was, quite simply, very lucky to have gone the way she did.

And we were all blessed to have her for as long as we did. So say we all.

The Last 24 Hours

Not my last 24 hours: Amanda's.

Tuesday night, before Alastair went to bed, we had our last Skype call. Alastair and Amanda had a great time praying, and I went and fetched the kitties for Amanda to see.

A couple hours later (probably around 11:15 EDT), she called me, and we talked for about 15 minutes. The conversation was lighthearted, upbeat, and fairly mundane: she wanted me to return to Texas on Friday, we chatted about BSG (she had The Cable at MDAnderson and got to see the finale), and she told me she was feeling pretty well.

At some point in the night, she started experiencing dizziness and apparently vomited. By the time her dad got there in the morning, she was sitting in the bathroom with her head in her hands and very out of sorts. The staff helped her back to bed, where she sounded very groggy and couldn't get comfortable.

She raised her hand, and her father took it. They held hands for several minutes while she faded away.

A medical team rushed in and could not bring her around. They rushed her to the ICU where she was intubated, and had Ed notify me and Leigh to get on a plane.

A CAT scan was performed at some point and revealed she had bleeding on her brain. Her platelet counts had gotten so low that her blood vessels simply failed, and the bleeding put pressure near her brain stem, cutting off vital functions.

We arrived in Texas 5 hours later, and after almost 90 minutes of waiting were taken to her.

Her body was still functioning, but Amanda had long since left. It took over an hour to get the doctors to sign orders to remove life support, and once they did, she died almost instantly (10:15p).

Her parents and I were by her side.

Manda's not sick any more.

---

For those who are curious, I will leave her blog up. I might disable further comments, but I imagine I'll ultimately merge her posts and mine, cut it to PDF, and make it available to anyone who really wants to revel in all that pain.

My Baby's Gone

Ok, that's more reasonable

So, once again, a miscommunication has caused undue panic. Apologies.

Turns out the plan is NOT to rush straight from chemo to transplant. When I went back and thought about the transplant process, at least as explained by MCV, I realized something was hinky. It would take weeks to track down the donor first identified last Summer, ensure their continued willingness to donate, harvest and treat the donation, ship it, and prepare her for transplant. Not 5 days: weeks.

Their current goal is to zap the white blood cells from her system, chemo her, and get her stable enough to undergo further clinical trials. If those trials are successful, they will then do the transplant.

That's very different, dontcha think?

The confusion was caused by the doctors making an end-game question on the first play of the game. Not cool. They asked if she still wanted her transplant to happen in Houston, which honestly shouldn't have even been a topic of conversation
at the time at all.

And a bit more about the leg pain (which, right now, is my primary cause for concern): they've ordered tests--can't remember if she's already undergone those--to look for a blood clot. In the meantime, she's wearing pressure hose to keep the blood flowing. There's a risk with her severely depressed blood counts of hemostasis, a condition where the blood effectively congeals in the capillaries and pools in the extremities. Non-flowing blood causes oxygen deprivation, which causes cell death, which spells necrosis, which translates to gangrene.

So for now, in spite of the pain, she's trying to stay on her feet as much as she can. The hose have alleviated the pain in her legs, but her feet are still quite sore.

The News Ain't Gettin' Any Better out of Texas

Yesterday Amanda went in for routine blood tests. She'd been complaining for a few days (really a week, but off & on) about pain in her legs, but had attributed that pain to increased activity levels (Alastair's with her in TX!).

Well, her blood tests were anything but routine, and the pain in her legs had gotten so bad that she was being pushed around in a wheelchair. Turns out her white blood count was 160,000, which is even higher than it was last week when she was hospitalized.

So she was hospitalized again. This time they performed leukopheresis to reduce her WBC, and kept her overnight. Today she got the results of the leukopheresis, and while her WBC came down to 40K, they're going to repeat the procedure and follow it up with 5 days of chemo.

Here's the kicker: they want her to seriously consider doing a transplant in Texas. Probably right after the chemo. They don't want to wait around for remission, which has us a little nervous: we're starting to think the doctors at MD Anderson believe she has a very narrow window in which to perform life-saving procedures.

To be as honest as possible, there's very little chance that she'll survive this. My research has shown a 0% survival rate on HSCT recipients with active leukemia. MCV wouldn't even consider it. But there must be some shadow of hope or they wouldn't recommend it at all, and I'm certainly no hemo-oncologist.

Alastair and her mom are staying out there thru Saturday, and her dad is driving back out there early tomorrow morning. I'm in a holding pattern for now, but will be on a plane if anything changes for the worse.

Crummy Day

So you already knew that Amanda went to the ER this morning, and this just 3 days after I came home.

She was treated for dehydration, which brought her heart-rate down, but then they told her that her white blood cell counts were still too high, despite the 5 days worth of hydroxy urea she'd been taking. So they've admitted her, and will be administering a small amount of ARA-C, which is an element of standard chemo packages. If all goes well, she should be discharged by Friday.

I just spoke to her a little while ago, and she's waiting for a bed to be brought into her room. She doesn't have her computer with her, and she might not get access to the interwebs until she's discharged.

Her mom and Alastair are scheduled to fly to Houston on Saturday, so keep your fingers crossed that she gets out before they come.

EDIT: Her dad is there with her right now, and I think he's scheduled to come home Friday.

ER

Amanda's in the Emergency Room at MD Anderson. Her heart rate was up to 153 this morning. I don't know anything else, as of yet, except that she can't be called (no cell phones in the ER).

Bad News from Johns Hopkins

More to come, but it ain't good. Sit tight and wait for Amanda to come to grips with what they told her.

With apologies, we've been too quiet

I've resisted the temptation to blog on unremittingly bad bouts of pessimism. You see, there hasn't been much to be optimistic about lately. I've been fairly happy, spending time with Amanda and Alastair, but things just haven't been good for a while.

Amanda's typical neutropenic fever didn't happen typically. Usually she gets hit hard by the chemo about 8 days after getting home, and then at day 10 gets pulled back into the hospital with a fever, and stays there for 3 days. Well, this time she's just been bed-ridden on and off for about 2 weeks. Last Monday she went in for an overnight to get an extra dose of the biologic element of her last chemo, and she's been fighting nausea and and lethargy ever since. She's hardly eating, losing weight, and the random bleeding continues.

Yeah, I'm officially worried. I've told her I'm going to start marshalling her: forcing her to eat on time and to consume reasonable portions or switch to a liquid protein diet.

A couple of weeks ago Alastair brought a wonderful case of bronchitis into the house, and the three of us have been passing it around liberally. He and I are mostly done with it, but Amanda seems to be getting worse and worse, often coughing to the point of gagging, and this morning coughing so hard she couldn't breathe.

Now it turns out my stepmother has shared in the delectable soup of bronchitis, as has Amanda's mother. Both have sought medical treatment, and in the case of my stepmother, the test revealed a spot on her liver that may well be cancerous.

Good news all around.

So I've been reluctant to say anything. Generally I like to temper the bad news with some glimmer of hope, but frankly I'm not seeing one.

Health Scores for 2008

I totally started the year off with a Woe-Is-Me approach, bemoaning my string of illnesses and putting off any significant testing lest anything dreadful should be found. Yeah, I look pretty petty in retrospect.

Amanda's HSCT has been bumped up by 24 hours. She's now going in for her port on 9/30 and being admitted 10/1 for The Big Suck. We're going to try to get to the fair at least once (if not twice) before then, enjoy our friends and our time together, and blast the holy hell out of some paper targets. I shaved her head the other night (my first time doing my wife's hair) since she was making a big ol' hairy mess everywhere.

Lucy's all better! She ran her full course of meds, finishing her last antibiotic on Monday morning. Now she's all ready for her battery of shots!

Vivienne is now overdue for her shots.

I'm well, thanks for asking.

Alastair is doing great. He's getting over a string of little colds that have kept his nose runny for over 2 weeks, but is in great spirits and seems to be loving the cooling weather.

Work sucks.

Insurance: Auto v. Health

It occurred to me late last night that there's a fundamental difference between auto insurance and health insurance: if Amanda were a car, she would have been totaled at the first mention of leukemia. Right now I'd have a new wife and Amanda would have been either sent to the crusher or sold at auction.

Granted, with 8 years of depreciation, I might not have gotten a significant settlement, so I might have to settle for a wife with less power and fewer features, but then in the last 8 years, maybe some of the highly desirable features that I specifically optioned are now de rigueur. Maybe the power windows that I paid an additional $500 for are simply a standard feature these days. Heck, my new wife might even have come with XM or HD Radio at no additional cost!

Last year's BMW might be this year's Kia.

But then a fundamental similarity also occurred to me: when the car insurance company totals your car, you have the option of buying it back from them. You get a salvage title, and re-insuring the car is almost impossible, but if you're willing to put in the considerable time and effort, you can get your old beloved jalopy back to running condition and even restore it to pristine showroom shape.

So I'm going to be operating a wife with a salvage title. And while she won't have that new-car smell, I think she's well worth the time and effort to put her back together.

Quarantine at Casa Amos

Amanda's back in the hospital as of this morning. She woke up with a fever of 101 and was horribly depressed at the aspect of spending more time in the slammer.

Alastair is still generating his fair share of snot, and sounds pretty good and congested.

I'm sporting a sore throat and periodic light-headedness.

Lucy is going to be admitted to the kitty hospital this afternoon. Her wheezing has not improved, and she hasn't eaten in days.

Poor Vivienne is the only one who's well, and while she's a really good nurse-maid to all of us, 4 patients is just too many for one well-intentioned cat.

Remission: Yes, No, Maybe, Circle All!

Amanda is technically both in and not in remission.

Her blast count is below 5%, the chief determinant of remission. Normal blast cell counts are 3.2%, whereas leukemia can be (but generally is not) diagnosed at 3.4%.

However, more modern testing of that <5% shows that her blast cells are "abnormal", which is the new gold standard.

So she's both, which has implications for her treatment options. Transplant is not off the table, but now we're just looking at managing the sickness in preparation for the transplant (transplant on patients with active leukemia are generally not successful as it takes 2 - 3 months for the new immune system to start working, and post-transplant chemo is not an option).

So she was given 3 choices:

1. HIDAC (High-dose ARA-C), aka consolidation therapy -- what she's had the last 2 times.
2. FLAGG (fludarabine / idarubacine), aka induction therapy -- what she had the first 2 times.
3. Clinical Trial

The argument against the first two is that they've both failed to keep cancer at bay. FLAGG didn't work the first time at all, and HIDAC hasn't kept the cancer away long enough between treatments.

The argument against the 3rd is that it's a trial. There are no proven results, no statistics, no way to predict the future. But the trial offers the hope that a new set of tools presents an attack vector the the leukemia doesn't know.

The trial would take 2 weeks, and she'd be in the hospital the whole time (except weekends), and she'd take 3 pills / day and one 4.5 hour transfusions on days 1 and 8.

If she forgoes the trial, they can try to use FLAGG and/or HIDAC to keep the cancer in small enough enclaves to have no real effect on her transplant. Either way, she can move from one treatment option to the other at her choice.

Amanda has just over a week to ruminate on the options, but the medical staff will also discuss and make recommendations next Wednesday (they have a weekly meeting on Tuesdays to discuss all patients).

Manda's Sick - Blood Test Blues

You've probably read Amanda's post. If not, take a moment and do so. I'll wait.

Yes, a blast cell was found, and yes, it probably means remission is no more, but nothing is definite. Amanda is having a biopsy right now and will not have results until Friday.

Her blood-counts as a whole, however, are higher than they've been since any of this crazy crap started. Blasts, from what I've read, do exist in normal healthy people, just not in large numbers. And that's why nothing is definite: it's possible that one of these random rogues was detected, and that she's fine.

Either way, she's scheduled for another round of chemo next week, and the biopsy results will help the medical team decide how best to proceed.

Manda's Sick - This just in!

8 preliminary matches! Now they have to be contacted, confirmed as willing to donate, and brought in for further testing.

Amanda apparently also has a rare antigen that will probably preclude a 100% match, but we're told that a 95% match is likely and good enough.

Manda's Sick - The Future

Yesterday we had THE BIG MEETING with the staff of VCU Health System North 10: the bone-marrow transplant team. They were late, and by late I mean more than an hour late, but the information they gave us was invaluable. I'll try my best to recite it here, in some vague semblance of logical order.

Yesterday they drew her blood to begin allelic matching. This is a matching process that uses 10 markers instead of the usual 6. As there are approximately 7 million people on the bone-marrow registry, and she's caucasian, there's an 82 - 85% chance of finding a matching donor. That donor must be contacted to ensure that he/she is still interested and available. One complication here is that a significant portion of the registry is currently serving in either Afghanistan or Iraq.

We discussed having a bone-marrow drive, but there's really no point, at least not explicitly for Amanda. Anybody who gets tested now wouldn't be on the list for about 2 - 3 months, and we're expecting that she'll be preliminarily matched within 10 - 14 days (that's just with the results of her blood-test and a basic screening of a computer database). She should have a definite match by 6 - 8 weeks--but maybe as many as 11 weeks.

We still encourage as many people as are willing to sign up. There is a cost, but the payoff is potentially enormous.

In the meantime, Amanda will continue to receive chemo-therapy treatments. The transplant team wants to minimize the number of successive treatments since she's in remission, but her particular flavor of leukemia (monosomy 7) is both aggressive and intelligent. Too little chemo and it returns, taking her off the transplant list. Too much chemo would actually enable the leukemia to learn about the medicine and take steps to defend itself (WTF???!!!). The particular method will be FLAG, most likely, as it's a medium-dose Ara-C, and hers has proven tougher than what a low-dose Ara-C can handle. They don't want to go high-dose as that would destroy her GI track, and they need her to be eating healthily.

Then, right before the transplant, she'll go in for 6 doses of full-body radiation, followed by 2 days of chemo. Then she'll receive the transplant (interestingly, she'll probably be participating in a clinical trial to determine which is more effective for her particular flavor of AML: stem-cell or actual marrow), and begin a 4 - 6 week process of intensive monitoring and anti-rejection medication.

When she comes home, she'll be taking literally dozens of pills daily, enough that prior patients have joked about just pouring some milk over them and eating it like cereal.

From what I recall, the first 100 days after the transplant will be the most important time. She has been explicitly instructed to be a weepy whiny complaining hypochondriac. Important subtle clues into potential issues like Host-vs-Graft disease can include loss of appetite, so I'm supposed to snitch on her if she doesn't eat well.

All of this continues for 6 - 9 months, minimum, and will also involve an utter lack of house chores. She is not to cook, vacuum, dust, otherwise clean, do yard-work, go to the grocery store or drugstore (she can use the drive-up window). But the bad news is that she can't really play with the kitties. All the furniture will have to be covered, so that the cats can lay where they want, and then uncovered for us to use, and then re-covered when we're done. If she pets either cat, she'll have to immediately wash her hands, and if she wants to lay with one of them, there will have to have a sheet between them.

Amanda will require a care-giver for at least a year, if not slightly longer, and if she has any neutropenic fevers or other issues, she is to call the clinic (open 24/7!) and get to the hospital within 15 - 30 minutes. Everybody who comes into common contact with her will have to have a flu SHOT this year (no nasal sprays), and she cannot be around anybody with an infection.

But looking beyond that, things get much better. She should slowly be able to re-integrate herself with society. One curious thing she'll have to do is get re-immunized for all her baby shots. She'll then be able to start going to the movies, eating out, and all that normal stuff other folks do.

Then the only things we really need to worry about are long-term secondary sickness markers.

We asked about survival odds, and the doctor told us that they should have a mortality rate of 20 - 25%, but that North 10 generally has a 12% mortality rate.

If you're curious about what the transplant is actually expected to do, the doctor described it thus: "Do you have a best friend? Do you and your best friend generally see eye-to-eye on most things? If you swapped houses with your best friend, would she redecorate? Because that's what we want." They're taking a portion of someone else's immune system, using it to replace her own, and then asking that immune system to leave things pretty well as they are, but to take care of things that just don't fit, like leukemia. They are encouraging this new immune system to take issue with the leukemia and get rid of it, but not expand the operation into any serious renovations. Thus they're looking for a matching donor of roughly the same age, with roughly the same historical exposure to disease.

So there it is, in a nutshell. I'm not really worried for Amanda--she's rough-tough. I'm worried about whether or not I can perform to the level required. I'm worried for Alastair, and how we'll deal with child-care (we can't do daycare, as that would bring too many potential germs into the house).

Manda's Sick - w00t!

Amanda is being curiously reticent in posting that she's...in remission! So suck it, leukemia!