The 1040 Window

We met with Dr. Paquette today and we got the scoop! And it includes a very nice reprieve!

Here is the plan: 1) I will have 3 weeks off to recoup (doing that at this very moment!); then a week of chemotherapy in the hospital; then a few days out of the hospital until my immune systems dissappears; then two weeks of neutropenia (no immune system), in the hospital. 2) Then I will again have 3 weeks off to recoup; then a week of chemotherapy in the hospital; then a few days out of the hospital until my immune systems dissappears; then two weeks of neutropenia (no immune system), in the hospital. 3) Then I will again have 3 weeks off to recoup; then a week of chemotherapy in the hospital; then a few days out of the hospital until my immune systems dissappears; then two weeks of neutropenia (no immune system), in the hospital.

And then I will be done!!!!! Okay, so it seems a bit strange to me to be so excited about a road ahead that is still pretty long… but I am. I guess it is really nice to have a clearly plotted course and “regular” chemotherapy is nothing compared to what I have already gone through. Of course, complications are likely, so the road may very well change, but hopefully not!

So for the next couple weeks I will be in Ojai. We are trying to move out of our apartment, because of mold, and find a new one, because the doctors do not want me living in a moldy environment. Thankfully we have had a lot of help moving out, since I, myself, am not good for much! Please pray that we find a nice clean (no mold!) place to move into. In fact, we have a particular place in mind (Montgomery Oaks apartments), and are hoping that a unit becomes available soon.

Regarding a stem cell transplant (bone marrow transplant), I will only need one IF I relapse, which, God willing, WILL NEVER HAPPEN! Thank you, all, for so many offers to be tested to see if you match with me. As Gail mentioned, though, it is great for everyone to be tested. If I understand it correctly, the way it works is that once you are tested you are added to a database. Then when someone needs a stem cell transplant, the database is searched and you may save someone’s life!

Things should be pretty quiet for the next few weeks; thanks to all of you that keep in touch by posting (and those of you that just read too!!!). I appreciate and enjoy reading what all of you have to say.

God bless you all richly!

-Aaron

P.S. You may notice something funny about the day count above. I think I may have messed up the count at some point when my faculties were not all there. I just did a “fresh” count and today is indeed day 98, just over 3 months… wow.

A REAL IMMUNE SYSTEM!!

We were discharged very late last night, and headed over to the Tiverton House. I am feeling quite a bit better after getting over the fevers of the last few days.

I got my blood test results from this morning and I have a real immune system today (albeit the lowest end of *normal*)!! Fow a while, my body was not retaining platelets, even the ones they were giving me regularly, but they seem good now.

Neither Rose nor Annalyse are stem cell matches with me so I am not sure what the next course of action will be. It may simply be multiple (2-3 more) rounds of consolodation chemo (exactly what I just finished with) or they may search for a match elsewhere or they may want to use my own stem cells. I have a doctor’s appointment in a week and should have some clarification then (presumably).

BTW, the breakfast ball is a very *tasty* corn beef hash mound.

God bless you all!

-Aaron

As Aaron, in acute respiratory distress and struggling for every breath, was being wheeled out of room 1040 and down to the basement ICU nearly 3 months ago, he yelled back the last words we were to hear from him for a month: “Get me a bigger room!”

Room 1001, at the east end of the 10^th floor, is definitely a bigger room; by hospital standards, posh (by hotel standards, Econolodge, but whose comparing?). When Aaron began induction 2 weeks ago and scored room 1001, his request was granted…for a short while. Then, Nancy Riordan, wife of Los Angeles ex-mayor Richard Riordan whose successful business career before his stint as mayor netted him a reputed worth of some $100M, checked in. Aaron got the boot, and Nancy got the room. UCLA medical center, quite understandably, is just a tad less democratic than cancer.

Now Aaron has come full circle, back to the more plebian quarters where he started…back to room 1040.

Twice in the last week, UCLA has run short on platelets. Twice, Aaron managed; first by winning the “who needs them worst” competition, and second by the good graces of our Ojai neighbor Linda, for who’s timely visit to the platelet donation center we are grateful indeed.

Aaron’s blood counts continue low. Regular packed cell and platelet transfusions keep things under control. Intermittent nausea, vomiting, fever, exhaustion, and pain are reminders that Room 1040 is really not a small room in an overpriced vacation resort.

Aaron asked me (Natalie) to let everyone know how he is doing. He basically feels pretty miserable. He has been having fevers since Monday and has a 102.4 temperature right now. He feels pretty nauseous and is hoping to get some medicine for that tonight. Today, he developed pain behind his left eye. The doctors say that he has episcleritis (inflammation in the white part of his eye) but don’t see any reason that he should be having pain. He will probably be visited by an opthamologist tomorrow. At .4, his white cell count continues to remain in the neutropinic range. He feels too bad to watch t.v. or post on the blog or do much of anything. Hopefully, Aaron will get through this part soon and we can go home for awhile!

We are so glad that we can keep in touch with all of you through this website. Thank you for checking in and praying for Aaron. God is teaching us to rely on Him. We know that He is in control and He is giving us strength as we wait on Him. We love you all so much and are blessed to have you supporting us!

Blessed be the Lord, who daily bears our burden,
The God who is our salvation. Selah.
God is to us a God of deliverances;
And to GOD the Lord belong escapes from death. Psalm 68:19-20

Sprinkled on the surface of nearly every cell in our bodies are a few different kinds of complicated protein molecules with the fancy name of “Human Leukocyte Antigens” (HLA’s). These proteins aren’t exactly sprinkled willy-nilly. In fact, in each person, they are arranged exactly just so, and exactly the same on every cell in that person. Our bodies’ defenders, The Leukocytes, use these arrangements as a sort of Braille code to identify friend or foe. The Leukocytes roam the body, blindly bumping into other cells. But this bumping isn’t accidental. Like skilled Braille readers, the Leukocytes feel for the matching codes; when they encounter a bacterium or a foreigner’s cell, they sense that the should-be-just-so proteins are not just so. Illegal alien! No questions are asked, no deportation hearing is scheduled. The stranger cell is killed.

Today, Rosemarie and Annalyse walked into the lab at 200 Medical Plaza, across Westwood Avenue from the Jules Stein Eye Institute and walked out an hour later less 6 tiny vials of fresh warm blood…about 1/3 of a cup all told. There is about the same odds as when you pull the lever on a Las Vegas slot machine (a tad under 50-50) that the Braille code on the blood cells in 3 of the vials will be close enough to the code on Aaron’s cells that that the sister’s Leukocytes could be fooled by Aaron’s cells. The blood will be examined by the lab’s magic decoder rings which will crack the Braille code and compare it to that of Aaron’s cells. If they match close enough, either Rose or Annalyse will qualify to be a stem cell donor.

Stem cells are the cells that become all other cells. Stem cells don’t do much if left alone except stay alive and reproduce. But stem cells, for all their apparent languid, life-o-Riley living, have an amazing talent. If a stem cell is finessed in just the right way, it can turn itself into just about any kind of cell found in a living creature. Inject a stem cell into a heart, it can become heart muscle; put it in bone marrow, it can become blood. Incarnate transubstantiation, if you will. A melding of genetic disposition and environmental influence. (It used to be thought that only offspring of the few-dozen stem cells found in a pinhead-sized, 4-day-old embryo could accomplish such magical sleight-of-cell. Over the last few years it has become increasingly clear that stem cells by the millions found in folks thousands of days old can perform many of these same transmutational tricks.)

While the enemy in Aaron’s body that has subverted his Leukocytes is at this point in deep hiding and bearing the brunt of the further attack from consolidation poisons, it will likely be only a matter of time after the chemical warfare ceases that the enemy will emerge from hiding to continue its horrific brand of terrorism. If this enemy is to be defeated, not only Aaron’s Leukocytes must be destroyed, but the deep hiding places where they are spawned must also be destroyed. The cells that make the cells must be destroyed.

So here’s the plan: Aaron will receive a fatal dose of poison, (and possibly also radiation), so intense that not only his Leukocytes, but his complete immune system, all the bone marrow and all the stem cells, will be irreparably destroyed. Then, just in the nick of time, stem cells from a donor will be injected into his blood. These stem cells, not having been subverted by the enemy, will settle into the bones, begin to reproduce, and begin make new untainted stem cells, new marrow and new blood, completely free of the enemy. In a co-mingling ineffably sublime, the donor’s stem cells will become Aaron.

It will be a week or so before we find out if Rose or Annalyse will be a match. If they are not, the search will widen. Siblings have a much higher chance of matching than anyone else. The odds plummet from not-too-bad Las Vegas odds to astronomically-bad winning-the-lotto odds. But there is a growing international database, now in the millions, of potential stem cell donors that have signed up for this Pick-Six lotto, so overall, the odds are not too bad. Unlike state run lotto’s, the more that play this game, the better odds.

While it is pretty unlikely that any family or friend other than Rose or Annalyse will match, you never know. And while most donor registrants will never actually donate cells, you just never know. You also never know whether, no matter how well matched, the donor’s cells will recognize the ruse, see Aaron as an alien, and attack. You just never know if a second donor or even a third donor might be needed for the hat trick.

But what you do know is that if you don’t play, you won’t win. And you know that if you do win, you win big; You win the gift of life for another.

The game in the U.S. is managed by the National Marrow Donor Program. More information can be found at:

http://www.marrow.org/

(It’s called “Marrow”, because just a few years ago, to get the stem cells, it was necessary to dig marrow out of bones. Nowadays, donating stem cells is usually a lot easier. It’s like giving blood, except you imbibe a colony stimulating factor like filgrastim or such for a few days before that makes you feel like you have a mild flu, and you get to lie down a couple hours instead of a few minutes. Instead of your blood being taken away and bagged up, it flows though a clever machine that plucks out the stem cells and courteously returns your blood to you.)

I got a fever yesterday. As soon as the thermometer registers 38 degrees celsius or higher, it trigers antibiotics, cold sacs, blood tests, and tylenol. The fever subsided some but I woke up during the night to vomit. So far I am feeling better today; praise God!

I thought you all would enjoy a little hospital food with me. I call this my breakfast ball. Who can guess what this is?

-Aaron

Getting my blood drawn. Ouch!

If you have never been woken up in the middle of the night by a needle probing for your vein, you really must try it sometime! It is a lot of fun. Or not… Every single night, anywhere from 2 am to 5 am, the needle-and-tube bearing villain enters my room determined to fill up those tubes with my red stuff. The bummer is that the more I get poked the worse it gets b/c my veins are getting better and better at sensing the onlaught of the needle and promptly hiding. The needle then has to hunt and chase for the avoiding vein, and, man!, that really hurts! My arm is getting bruised from all the hide and seek, which makes the needle’s job all the harder, which results in more bruising, which makes the needle’s job harder, which… and on and on…

Still, though, overall things are going well. I have not yet gotten any of the expected side effects: fevers, mouth sores, messed up intestines, mental problems. It will be quite wonderful if I am able to avoid all those things. My neck has been hurting a lot though. Talk to you later.

I Love you all!

Aaron

I came back into the hospital yesterday to be confined to my own little prison with a hepa filter larger than myself. I should be here from anywhere between 1.5 - 3 weeks, just waiting until my immune system comes back, and receiving blood and platelets in the meantime.

My insurance has finally pre approved the possible adult stem cell transplant, so Rose and Annalyse can get tested to see if they are a match with me.

Thank you all again, for your love and support!

In His Grace,

Aaron