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The 1040 Window

Aaron Boydston‘s Hospital Log

www.aaronboydston.com

Introduction ..................................................................................................................... 1

    Chapter 1 ? The Initial Trauma ? May 16, 2006 – July 3, 2006....................................... 2 The War with AML Begins ........................................................................................... 2

    Into the ICU ................................................................................................................. 4

    Fevers Became Ferocious ........................................................................................... 6

    Complete Paralysis (Medically Induced Coma) Begins ............................................... 6

    Two Nurses Needed .................................................................................................... 8

    Getting Better and Praise God Party # 1 ................................................................... 10

    Fevers Finally Fizzle .................................................................................................. 14

    First Time Awake ....................................................................................................... 17

    Father‘s Day: Gallbladder Removed and Aaron Speaks ........................................... 26 Out of the ICU ............................................................................................................ 28

    Remission .................................................................................................................. 33

    Out of the Hospital ..................................................................................................... 37

    Chapter 2 ? ―Regular‖ Chemotherapy ? July 4, 2006 – January 27, 2007 .................... 39 Gaining Strength, Preparing for the Rest of Treatment.............................................. 39

    Second Round of Chemotherapy............................................................................... 42

    Third Round of Chemo .............................................................................................. 48

    Fourth Round of Chemo ............................................................................................ 54

    Rigors ........................................................................................................................ 56

    The Last Discharge .................................................................................................... 58

    Chapter 3 ? Relapse ? January 28, 2007 – April 10, 2007 ........................................... 61 The War Starts Over .................................................................................................. 61

    Eye Pain .................................................................................................................... 65

    Heart Scare ............................................................................................................... 66

    Super Short Discharge .............................................................................................. 71

    Excruciating Pain ....................................................................................................... 72

    Discharged, THEN Pain Relief................................................................................... 72

    Real Remission.......................................................................................................... 76

    Lots a‘ Radiation ........................................................................................................ 77

    Chapter 4 ? The Final Battle ? April 11, 2007 – June 20, 2007 .................................... 81 Transplant .................................................................................................................. 81

    Engraftment Begins ................................................................................................... 85

    Engraftment is Officially Done.................................................................................... 86

    Mysterious Fevers ..................................................................................................... 87

    Blood Draws Become VERY Painful .......................................................................... 88

    Out of the Hospital ..................................................................................................... 91

    Back in the Hospital ................................................................................................... 93

    The Real Last Discharge ........................................................................................... 94

    Tired of Being Nauseous ........................................................................................... 96

    Home for Good! ....................................................................................................... 100

    Introduction

    This compilation/organization of my hospital blog is dedicated to my dad, Ken Boydston.

    Because of his diligent journaling I have a written record of the events that I have little to

    no recollection of (most of the days I was in ICU). Once Natalie, my Mom, and I took

    over the task of blogging, it was his diligent posting at the beginning that set the pace

    for us to continue giving regular updates.

    This document is simply all the Hospital Log posts compiled into chronological order

    and organized into chapters and sections with headings (much, much easier to read

    than archived posts).

    With very, very few exceptions, all the posts are exactly as they were when originally

    posted, with spelling mistakes and all. My reason for doing this is I feel it preserves a

    certain ―character‖ of the posts. Consider the mistakes you find a representation of us

    ―being in the midst of an intense struggle.‖ Any edits or notes I did make are in brackets [like this!].

    Each post contains a hyperlink to the online blog where you can also read the

    comments. If simply clicking on a hyperlink does not open up your web browser, try

    holding down Ctrl while you click. This can also be done with the table of contents.

    If you do not have time to read this entire story, since it is very long, I recommend you

    read Chapter 1. The ―ICU days‖ (The Initial Trauma) were the most ―exciting‖ and

    ―drama filled;‖ very intense reading.

     ―To Live is Christ,‖

    Aaron C. Boydston

     1

Chapter 1 ? The Initial Trauma ?

    May 16, 2006 July 3, 2006

    Chapter 1 ? The Initial Trauma ?

    May 16, 2006 July 3, 2006

    The War with AML Begins

    Hello world!

    Aaron asked me to set this blog up so he and his family can keep everyone up to date as he is being

    treated for leukemia at UCLA Medical Center. Please be prayerful in reading and responding to what

    will be written here.

    - nathan stryker

    10 Comments ?

    May 16, 2006

    The Journey So Far…Day 1 Tuesday 16 May, 2006 It seems like Aaron has had a flu hanging on for 3 or 4 weeks. Nothing that couldn‘t be ignored. Tired,

    run-down, aching joints. Missed a couple days of work. But today, he is getting some bad headaches,

    dizziness, a little shortness of breath, and fever It‘s enough worse enough that maybe a trip to the doctor this morning seems in order. Doctor looks him over, takes a blood sample, thinks maybe it‘s an

    infection. Aaron goes home with antibiotics. Doctor will call when blood sample tests come in.

    By late evening, Aaron is definitely not feeling well, and notices small red spots on his skin [and has a

    very difficult time breathing]. Natalie Googles the symptoms, and comes up with a couple matches:

    XXX and Leukemia. Of course, this can‘t possibly be, but she convinces Aaron to go to the ER at Ojai

    Community hospital. She calls Grandma Boydston a little before midnight and Anne makes the 5

    minute drive to Summer and Signal. to watch Christopher and Michaela while she takes him. Anne

    calls Grandpa B as he is leaving work in Santa Barbara, just starting the one-hour commute to Ojai,

    to let him know she won‘t be home.

    May 17, 2006

    The Journey So Far: Day 2 Wednesday 17 May

     [It is after midnight,] Dr. Williamson is on duty at the ER. Williamson is a glass-mostly-empty kind of

    doctor who looks for worst. He looks at Aaron, sees something he doesn‘t like, and has Aaron‘s blood

    driven the 20 miles to the nearest 24/7 blood lab in Ventura.

    The lab numbers don‘t make sense. How can a WBC (white blood cell) count of 200,000, (200,000

    cells/microliter, [normal is between 4,500 and 10,000]) be possible? Drive another blood sample to

    Ventura to run the test again, get on the phone with UCLA. Dr. Lee at UCLA confirms: This is Acute

    Leukemia, hyperleukocidic and most likely myelogenous. This is a medical emergency. This will

    require immediate, dramatic, and heroic intervention.

    How can it be that Aaron, breathing a little hard but sitting up and cracking jokes, is so near death?

    The battle begins. Dr. Lee, acting as remote observer, calls in fire. The volleys are liquid, flowing from

    little plastic bags hung on a post, down through transparent plastic tubes, through a hollow needle

    penetrating the enemy‘s usurped domain. UCLA prepares a room. Preparing a room isn‘t just changing the bedsheets. Legions of technicians,

    nurses, specialists, doctors, administrators, equipment, supplies, and chemical weapons of mass

    destruction must be ready when and as needed to effectively wage war. The medical team

    assembles, and begins to map out strategy. An ambulance is called to make the 75 mile trip from Ojai

     2

    Chapter 1 ? The Initial Trauma ? May 16, 2006 July 3, 2006

    to Westwood.

    It‘s just after noon when Aaron arrives at UCLA Medical Center, West Wing, Room 1040. Within

    minutes, he‘s a tangle of tubes, a warren of wires, as he is connected to the machines of war.

    There are 2 immediate critical things to do:

    Reconnoiter….Begin the lab tests to assess the enemy Destroy…..Get rid of a few billion Leukocytes.

    This cancer is spawning millions of white cells per second. White cells (leukocytes) are supposed to

    help the body by destroying invaders…fighting disease. But the enemy cells are teenage mutant

    turncoat cells…huge, sticky premature mutants destroying the body they are supposed to protect.

    Teenage gangs run amok. And their numbers are overwhelming. They multiply, clump together, stick

    to the cell walls, turn the blood white. Destroy everything by their overwhelming numbers.

    The plan of attack on these mutants is simple: poison them to death, and poison the mutant bone

    marrow cells that are spawning them. Unfortunately, the poisons that kill the mutants will also kill

    billions of good cells. Killing the mutants will make Aaron deathly ill. Of course there is no choice, as

    the mutants are nearly victorious already.

    But there‘s a problem. The mutants are so profuse, too many good cells will die before the mutants

    are destroyed, and there will be so many dead mutants that even in death, they may strike a fatal

    blow.

    An ice cream cart bristling with knobs, wires, gages, displays and tubes is wheeled in. Two of its

    many tubes are connected to Aaron; one to suck his blood out and another to spit it back, sans about

    1/3 of the mutants, which will be removed by a centrifuge hidden in the bowels of the ice cream cart.

    Unfortunately, the mutants are about the same density as platelets, so, not unexpectedly, he needs a

    platelet transfusion.

    After this, Aaron looks a bit improved

    The first preparatory poison begins to drip. Not the main attack, just some preliminary strikes to soften

    the enemy….down the tube, thorough the needle, and into the enemy‘s camp.

    3 Comments ?

    May 18, 2006

    Day 3: Thursday, 18 May 2006 WBC down to 128,000. Not low enough, so in comes the ice cream cart. Aaron is connected, and the

    blood scrub (leukaphoresis) begins again. A few problems, blood doesn‘t want to flow too well, but

    they manage.

    Bloodscrub looks good, WBC count down to 75,000. Get the main line ready for injecting the heavy

    duty poison. The heavy duty poison can‘t be injected into a wimpy little vein in an arm or a leg, as the

    poison is too toxic. It needs to get mixed immediately with a big volume of blood, so a ―PIC‖ line, is

    inserted into Aaron‘s upper left arm and guided with ultrasound all the way to the superior vena cave

    at the entrance to the heart‘s right atrium. As a last check, just before starting the poison, Aaron is x-rayed to check on the exact placement of

    the PIC line nozzle where the poison meets the blood. The doctor isn‘t happy with the placement, so

    out comes the PIC line. Another line is needed. But by now, the WBC has rocketed back up to

    120,000. It‘s too late now for the major poison; the window is missed. Another bloodscrub will be

    needed tomorrow.

     3

    Chapter 1 ? The Initial Trauma ? May 16, 2006 July 3, 2006

    Aaron‘s breathing is harder, more labored. Bump up the Oxygen. X-rays indicate something in the

    lungs. Pneumonia? Leukostasis? Crank up the antibiotics, just in case.

    Second day of induction: ―induction‖: fancy word for dripping cytotoxins (cytotoxins:fancy word for the

    poisons, just slightly more poisonous to cancer cells than to healthy cells, i.e., the ―Chemo‖ in

    ―Chemotherapy)) into Aaron‘s blood.

    The leukemia is confirmed to be as initially diagnosed: Acute Myelogenous Lukemia (AML).

    May 19, 2006

    Day 4: Friday 19 May 2006 Get the PIC line in, check it, its good.

    Bring in the ice cream cart and do the 3rd blood scrub.

    WBC under 100,000

    Late afternoon, bag is hung, the IV controller opens a valve and the main attack begins. Powerful

    poison begins its silent, steady, deadly drip. For 3 days, the poison Idarubicin will mete destruction

    upon the mutants, while receiving ongoing support from the Cytarabine, already dripping since

    Wednseday night, and scheduled to continue its destruction for 7 days.

    May 20, 2006

    Day 5: Saturday, 20 May 2006 Aaron‘s getting more listless, agitated, focused on breathing, eyes closed most of the time,

    sometimes dozing and hallucinating. Coughing off and on. Coughing hurts.

    Dr Lee does the bone marrow biopsy. Aaron lays on his stomach, doctor probes around just above

    left butt cheek, looking for a place to probe. Finds what he wants, swabs the area with betadyne and

    alcohol, injects lidocane just under the skin, pokes deeper with the lidocane needle, injects more,

    buries the needle injects more. Changes to a longer needle, goes deeper, changes to a really long

    needle and goes to the bone. Makes a small incision, then grabs a widgit that looks like a blue T-

    handle ?‖ hex key and plunges it to the bone. Pokes around on the bone to find a good entry spot,

    then with a mighty push, he shoves it deep into the pelvis. The T-handle key is actually a miniature

    coring drill, such as might be used to extract ice from deep below the polar icecap. 30 minutes later

    he gets what he‘s after. Breathing is increasingly labored. We were warned that Aaron is heading for ICU. ICU doctors check

    every hour or so, monitoring his status and asking us (like we‘re the experts) what we think…is he

    more alert? Less? More confused (he‘s been hallucinating off and on….firefighters, lemons, and

    limes)? Less confused?

    They bump up his oxygen, put on a different mask that gives more moisture, and it seems to help a

    little.

    Into the ICU

    May 21, 2006

    Day 6: Sunday, 21 May 2006 Finally, at about 5:00 AM, he‘s not able to breathe well enough to keep his blood oxygenated. While

    the blood oxygen isn‘t critically low, he is behaving as if it is; he‘s seeing Vikings and other manner of

    people that aren‘t. Of course, with such a cocktail of drugs and poisons circulating through his brain,

     4

    Chapter 1 ? The Initial Trauma ? May 16, 2006 July 3, 2006

    an induced chemical imbalance could also account for the visions. But there‘s no denying the labor of his breathing, and the amount of effort Aaron is expending to stay alive. He seems to be focused

    (when not confused and hallucinogenic) on breathing…eyes closed, intense, suddenly asleep, awake

    again a minute later. He need‘s help. Help comes by way of a tube down the throat directly into the lungs and hooked up to an air pump

    that forces oxygen directly into his lungs.

    Getting the tube into the lungs is a problem…. it goes down wrong; the chemo enhanced nausea

    needs but a tickle and the air tube fills with whatever was in his stomach.

    Second time‘s a charm; Aaron is sedated and the ventilator is working. But things aren‘t going well.

    To get a more real-time assessment of his situation, a Swan-Gans probe is inserted is inserted into

    the atrium of the heart. Another probe is inserted into an artery. These give immediate feedback to

    better manage the crisis.

    The cancer, previously confirmed to be [sic]

    turn for the worse

    Aaron is in ICU. They had to inibate him to help him breath, but he is still having trouble. Some

    stomach gunk got into his lungs during the inibation. Please pray!

    5 Comments ?

    May 22, 2006

    Prayer

    Yesterday many relatives and friends arrived to pray for Aaron. It was a criticial day and God was with

    us. Today he is stable and in the intensive care unit. For the next 48 hours he will be watched

    carefully. If all goes well, we can hope for a normal chemotherapy treatment and recovery.

    9 Comments ?

    Day 7: Monday, 22 May 2006 Aaron is moved from the overflow basement ICU to a real ICU on the 4th floor. Now he‘s got a private

    room in the ICU, with it‘s own HEPA air filter so that bacteria and other nasty stuff in the air is

    constantly filtered. 4th floor is more kicked back than 10th floor. People sleep all night in the [4th floor]

    waiting room. On the 10th floor, Anne and Natalie, getting a little sleep in the waiting room, get

    rousted at 2am and told to go home. They stay anyway.

    Bone marrow tests indicate AML is of subtype M5, Monocytic.

    Aaron is having a rough time. He keeps up a persistent fever, occasionally high.

    Every couple hours, blood tests confirm that there is no detectable infection.

    Infection is the ally of the enemy: The enemy white cells‘ are subverted; they maintain no vigilance

    against foreign invaders; they are useless against infection. To make matters even worse, killing the

    enemy also kills what loyal cells are left, leaving Aaron defenseless and vulnerable to opportunistic

    bacterial, fungal, and viral marauders out and about, seeking that which they may destroy.

    Aaron‘s fever spikes around midnight. May 23, 2006

    Day 8: Tuesday, 23 May 2006 Aaron is better today. The fever slowly retreats, and by morning he‘s a perfect 37C (Multiply by 9/5,

    then add 32 for last century‘s Fahrenheit units.)

     5

    Chapter 1 ? The Initial Trauma ? May 16, 2006 July 3, 2006

    Part of better is how he looks. Better, of course, is relative. Not relative to last Tuesday morning, 8

    days ago, when he looked like Aaron. Looking that far back is as imprudent as looking that far

    forward. Relative to yesterday is our point of reference. A little less puffy, his swollen-shut eyes not

    quite so distended, his skin not quite so sallow, the sores not quite so raw. But if you look past the

    cyborgian tangle of tubes and wires protruding from every natural and inflicted orifice of his body, he

    looks better.

    The other part of better is the numbers. There‘s lots of numbers, pages of parameters that are

    measured, compared, studied, and assessed. The doctors stare and scribble and question and

    comment. What does this number mean? But what does it REALLY mean in light of this other number?

    And what does this other number mean in light of such-and-such a drug, chemical, or procedure?

    Bottom line, the numbers say Aaron is possibly just slightly better, so the doctors are pleased.

    Remember

    Today, we are fasting and praying for Aaron‘s continued recovery and healing. if you‘re not called to

    fast, don‘t, but no matter what your beliefs, you can talk to God. If you believe in God, surely you

    believe God can heal. If you‘re agnostic, just tack on an ―if You exist‖ to your prayer. If you are atheistic, just think nice thoughts about Aaron. The important thing is that everyone is petitioning to

    something bigger than themselves on behalf of our friend aaron today.

    5 Comments ?

    Aaron and Christopher

    [sic picture is missing, but there is one in comments]

    This picture was taken over a year ago but it‘s the only one I have on hand.

    5 Comments ?

    Fevers Became Ferocious

    May 24, 2006

    Day 9: Wednesday, 24 May 2006 Today started with a fever that spiked at 39.5C during the wee hours. The search for the fever source

    turns up no hint of infection. The fever persists, albeit lower, all day and into the night.

    Until yesterday, Aaron has been getting 100% oxygen. Oxygen, not surprisingly, oxidizes stuff, and

    100% oxygen will eventually ruin tissue. Yesterday the Oxygen was reduced to 70%, but today it‘s

    back up to 90%, as 70% wasn‘t quite good enough to keep up with the body‘s needs. It‘s pretty clear

    there has been some lung damage. Most likely the damage is from a condition called Leukostasis,

    caused by the legions of mutant leukocytes that were present a few short days ago. As of now, there

    are virtually no white cells left alive….just legions of dead enemy cells that are stressing all the vital

    organs as Aaron‘s body struggles to eliminate them.

    Tonight, the last bag of Cytarabine will hang, and the initial onslaught will complete.

    6 Comments ?

    Complete Paralysis (Medically Induced Coma) Begins

    May 25, 2006

    Day 10: Thursday, 25 May 2006

     6

    Chapter 1 ? The Initial Trauma ? May 16, 2006 July 3, 2006

    This has been a rough day. Aaron has been very unstable. His vitals are all over the map.

    He‘s got a high fever, every indication of a systemic infection. Moving him just a slight amount to

    perform a procedure causes his blood oxygen to plummet. There‘s no place to go up, as supply

    oxygen concentration is 100%. All symptoms point to a systemic infection, but culture after culture

    reveal nothing. Every point of entry (probes, catheters, IV‘s) is cultured for local infection; all are all

    negative.

    The cold blanket brought in to help control the fever can‘t be put under him, as he is too unstable. The

    blanket is spread over him, but it doesn‘t work well. The refrigerator machine that pumps coolant

    through the blanket sits in the room. The room air conditioning can‘t keep pace with the additional

    kilowatt being dissipated by the refrigerator. The machine is stopped; Natalie and Anne take turns

    using low-tech, time-honored wet towels; this works. The fever comes down.

    Camela (his CCU day nurse today) works non-stop, never quite getting ahead of the demands. It took

    two hours early this morning to regain stability. Stability is finally achieved, but comes at an

    unsustainable price: 100% oxygen, and 22 cm PEEP. (Positive End of Expiration Pressure). This

    means that all the tiny air sacs (alveoli) in Aaron‘s lungs are being constantly inflated like millions of

    tiny leaking balloons filled with pure oxygen. The breathing machine must keep the balloons puffed up

    to prevent collapse. Several quarts of extra fluid have accumulated in Aaron‘s body due to the intense

    hydration required for successful induction of the poisons, and the inability of Aaron‘s kidneys to

    eliminate the excess. The lung damage inflicted by the mutants (and possibly the poisons that killed

    them…there is some evidence that the mutants initially responded to the poison by further mutating,

    becoming more mature and more destructive.) is allowing these accumulated fluids to leak into the

    airways, so the leaky balloons have to be constantly inflated. The constant pressure and the pure

    oxygen, will soon destroy the lungs they are heroically working to save.

    In spite of being heavily sedated, Aaron continues to initiate breathing on his own. This is of course a

    marvelous thing that living bodies are programmed to do without conscious effort: breathe. But the

    beat of the drum to which Aaron‘s lungs are heaving is too slow. He needs to be breathing like he‘s

    running a ? mile, not lounging on an air mattress (He actually is on an air mattress, which slowly

    inflates and deflates to provide a small amount of very slow movement to Aaron. Other than the

    machine-induced heaving of his chest and the slow, barely discernable movements of the air

    mattress, Aaron is completely still. The evidence that Aaron is alive are the numbersnumbers

    flashing on monitors, numbers of measurements from instrument probes outside and deep inside his

    body, numbers from computers calculating values from the measured numbers, numbers printed on

    test reports, numbers scribbled on paper, numbers that can lie to the ignorant, but render their arcane

    secrets those who, like Dr. Bajaj and Dr. Lee, seek the truth that lies beneath the numbers. This is

    medicine by the numbers: the numbers of life.)

    The ventilator synchronizes its efforts with Aaron‘s lounging pace, but it‘s clear that at this point, the

    machine can do better if it could take over; Aaron‘s efforts have become interference. The decision is

    made, and in late afternoon yet another IV bag is hung along with the14-or-so others that have been

    accumulating over the last week. Vecuronium Bromide begins to drip, totally paralyzing Aaron so he

    is unable to even attempt breathing. The machine is now in complete control. No part of the precious

    oxygen budget needs to power the lungs, and the machine‘s drummer sets the pace.

    The improvement is immediate; a small window of margin opens. The moment-by-moment struggle

    for stability a little less intense.

     7

Chapter 1 ? The Initial Trauma ?

    May 16, 2006 July 3, 2006 Aaron‘s kidney‘s are doing a yeoman‘s job, but their efforts are not enough. Between the induced

    chemotherapy poison, the poisons created by dead mutants, and the great deal of other chemicals

    and fluid going in through the various intravenous tubes, his kidneys can‘t keep up.

    So yet another machine is wheeled into the room, yet another couple needles are inserted, yet

    another couple tubes are connected.

    Blood begins to flow though the Mechanical Urinator.

    Aaron is on dialysis.

    The Urinator works just a little faster than Aaron‘s own Lasix stimulated kidneys…with Aaron and the

    Urinator working together, he gets some breathing room.

    A little after midnight, the Cytarabine bag is empty. The poison is finished.

    8 Comments ? Faith (by Natalie) I have been learning a lot in the last week about faith. It has been an overwhelming journey full of ups

    and downs but through it all I have tried to remember that God is controlling all things. Throughout the

    gospels, there are so many stories about how Jesus healed people out of His compassion because of

    their faith and for His glory. I am asking God that He would work the same way in Aaron‘s life. I am

    praying for God‘s compassion and mercy in this situation–we are His children and His love for us is

    so great. I am bringing Aaron to God believing that He is the Great Physician and that He can and will

    heal my husband. Above all, I am giving God glory for all that He has done for Aaron and will do. The

    important thing that I am learning is that our faith should not rest in the wisdom of men but in the

    power of God. Through all of the little successes and setbacks, I am praying for a strength that will

    keep me constantly trusting.

    Thank you so much for all of you who have been praying. It is so wonderful to see so many people

    petitioning our Father on behalf of my husband. Please, continue to pray especially for his lungs to

    heal and his body to respond well to the chemo. The next few days are crucial in his recovery so keep

    that in mind while you are praying. I am overwhelmed by how much people are doing for us without

    me having to even ask: the RV, taking care of finances, bringing food, visiting!, etc. Thank you so

    much! An especially big thank you to my family for taking care of the kids. I‘m looking forward to

    giving more Praise God reports in the future.

    10 Comments ?

    Two Nurses Needed

    May 26, 2006

    Day 11: Friday, 26 May, 2006

    Last night Aaron is double-teamed. Norma and Amelia work swiftly, each attending to different

    requirements. The Urinator provides Aaron some additional opportunities, which means additional

    observations, measurements, and adjustments. Aaron and his attendant machines together are a

    complex system requiring constant adjustments. As with modern, high performance aircraft, there are

    no stable trim settings. Just as these extreme fighter aircraft are aerodynamically unstable and stable

    flight is achieved through constant adjustment, Aaron is metabolically unstable and stable life is

    achieved only through constant adjustment.

     8

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