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.

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 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.

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.

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).

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.

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 ¼” 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.

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, 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]

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.