Saturday, March 31, 2007


Thanks to everyone for your prayers yesterday. We had an eventful day, though most of the action involved driving to and from the hospital and not the actual procedure. Our tire went flat on the way up, but seemed to be o.k. after a stop at the gas station for air. It made it through the day and all the way home (120+ miles), though upon further inspection today we discovered it to be completely blown and shredded. We had a very rainy drive up, and at one point on the interstate the vehicle in front of us lost control and we immediately followed. Brandon was able to keep control of the vehicle for the most part and thankfully there were no cars in the lane next to us at the time. I'm very shaky about things like that. Even a minor fender bender can be fatal when your platelets are below 20. On the way home, driving slow on a very bad tire, we ended up putting the car in a ditch. Thanks to the Lord and some helpful friends and neighbors, everything is going well today.

Regarding the procedure, Daniel did about five hours of pheresis yesterday. They were able to give me 10 million lymphocytes (the goal was 5-7 million) so I call that a success. The procedure itself was quite simple. I had premeds (benadryl and ativan) and then they injected the 14 ccs of blood product into my Hickman line. Took about ten seconds. The doctor told us he wants to see significant GVHD. The important thing is to catch it early so they can treat it with medication so I don't have long term damage. If I don't have GVHD with this infusion, they will probably do another. He said it often takes 2 or 3 treatments before they see significant GVHD. I don't know if I have that long, so I'm honestly praying we'll see it with this round -- normally flares within about a week. Praying to get sick seems odd, but it would definitely be the answer we need. We met a 26 yo AML patient yesterday who is currently in remission after having a stem cell transplant and subsequent DLI. (He was similar to me in that everything looked good until the 100 day biopsy.) That was definitely encouraging.

I'll see Dr. Perry this Wednesday, and the plan is to begin chemo again on the 9th. If I don't have GVHD with this DLI, we'll do another about 10-14 days out from this next round of chemo. The cells are frozen now so I shouldn't have to ask my brother to go under the needle again, which is nice. He's definitely been a trooper. Those are some BIG needles.

Saturday, March 24, 2007

Preparing for the DLI

My brother (stem cell donor) and I will be going to Barnes in STL on Monday for blood work. We each have to give up about 15 vials in preparation for the donor lymphocyte infusion (DLI) on Friday. I don't have Friday's appointment time yet, but we'll both be there again for pheresis and the infusion. If all goes well I can come home immediately afterwards. I am expecting to get sick as a result of the DLI. We are trying to cause GVHD in hopes of also having GVL (graft versus leukemia) to fight the disease. From what I've read, GVHD of the gut, mouth, skin and eyes are most common. The seriousness varies. It could land me in the hospital or be controlled with prescription steriods. If it doesn't kill me, I have hope of remission. The risks are very similar to having another transplant in a lot of ways. I'm approaching it with much fear and trembling. I've never been the adventurous type, yet find myself doing experimental chemo and procedures in an attempt to save my life. Quite ironic coming from the person who would never consider white water rafting or sky diving. I read about a woman the other day with AML who has undergone four transplants. I told my mom I have more respect for her than any olympian I've ever heard of.

In the meantime I'm staying in. My ANC was down to 200 on Thursday, so my immune system is basically non-existent. I still have to go out for labs twice a week. On Thursday I received blood and platelets. My platelets had dropped to 7, and I expect to need more again soon because one infusion doesn't usually bring them up that much. I hate when they get so low, because it's a battle to get them up again. In the meantime I face a lot of risks, as well as discomfort (easy bruising, petechiae rash, etc). Gary has learned that mommy is fragile and tries to be very careful around me.

Friday, March 16, 2007

Day Five

I'm done with chemo for the month. So far things are looking o.k., including today's blood work. I received some much needed platelets yesterday but it looks like I'll make it until sometime next week before I need another blood transfusion. From here on out I'll be doing blood work twice a week, and start a second round of chemo on April 9th. My white count is dropping and my neutrophils are still very low, so right now I am just trying to stay healthy enough to give us time to fight the disease. I live with the very real fact that one germ can end my life. I have to remember, too, that my body becomes my worst enemy at this time, as all of the natural bacteria can thrive. I'm on several prescriptions to help control that, and so far the Lord has granted health.

Side effects have been very minimal, which is a praise. Thanks for all your prayers! I don't know yet when I'll be getting the "booster" from Barnes. I'll keep you posted.


We heard from Barnes this afternoon. I'll be going in on the 30th for the booster. (Outpatient) We're still waiting to receive clarification as to the exact type of cells I'll be receiving.

Monday, March 12, 2007

Day One

Cardiac arrest, heart failure, cerebral hemorrhage, pneumonia...the list of side effects on the drug information sheet I received this morning were sobering to say the least. I fought the aspect of chemo that is rarely mentioned -- psychological -- wanting to run but knowing that this poison holds potential life for me. Fighting to live, once again. Praying that this time it will work.

Meanwhile, the disease continues to rear its ugly head, and my blood work reminds me of how sick I really am. Friday's transfusions provided a much needed boost in my hemoglobin and platelets. I'm mostly concerned about my neutrophil count, which was around 800 today. I'm used to seeing those numbers after chemo, not before. This is my first time dealing with low counts outside of the hospital.

Thankfully treatment went well today. I have yet to experience any significant side effects. I'm fighting mouth sores as a result of low counts, and I had some nausea today, but was able to keep everything down with some help from zofran and compozine. Nausea seems to be the most common side effect with decitabine.

I'll be receiving a T-cell or lymphocyte "booster" the week of the 26th up at Barnes, where I received my transplant. The goal is to infuse another 5-7 million cells. I have 3.5 million frozen, so my brother will be going in for more pheresis. I appreciate his willingness to go through it again. I'm nervous about a possible GVHD flare, but it holds some promise of remission, so I'm willing to try.

Thank you for your continued prayers.

Saturday, March 10, 2007

Thursday, March 08, 2007

The Plan

Hast thou not known? hast thou not heard, [that] the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? [there is] no searching of his understanding. He giveth power to the faint; and to [them that have] no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew [their] strength; they shall mount up with wings as eagles; they shall run, and not be weary; [and] they shall walk, and not faint. - Isaiah 40:28-31

Weary pretty much sums up how I feel right now. I'm getting blood and platelets tomorrow, though, which will help. I made it three weeks without a transfusion. Not too bad...I'll certainly take it.

I'll be starting chemo again on Monday. Round six as far as I'm concerned. We'll be using Decitabine. It's somewhat experimental in that it's not commonly used for AML patients, but it has been recommended to us by several doctors, including Ohio State. (Ohio is currently using it with their patients, and also within at least one clinical trial that I know of.) It is supposed to be a "gentler" chemo as far as side effects go. My counts will be low, but they already are. That's the nature of AML. We are still working with my transplant team at Barnes to see about getting a stem cell booster after chemo. There is some risk of a GVHD flare, but at this point in my life all of the options hold considerable risk.

The chemo will be administered outpatient -- one hour a day for five days. I can stay out of the hospital as long as I'm healthy, so my prayer is of course for good health. I would also like to continue taking the Mannatech throughout this course, so minimal side effects such as nausea and changes in taste would also be helpful. We may ease up a bit on the diet restrictions I've been following. Weight loss is an issue for me. I just reached the 100 pound mark a few weeks ago.

The best thing about getting treatment is probably having access to the university's high speed internet, so I'm sure I'll keep everyone posted throughout this next week. We live far enough outside of Columbia to be forced to use dial-up as our home connection.

Thank you, once again, for your prayers.

Friday, March 02, 2007


Narrator: Little did he know that this simple seemingly innocuous act would result in his imminent death.
Harold Crick: What? What? Hey! HELLOOO! What? Why? Why MY death? HELLO? Excuse me? WHEN?
(quote from Stranger Than Fiction)

I was sitting in the waiting area of Ellis Fischel too early this morning when CNN broadcast a news story about several teenagers who died from a tornado yesterday, as well as a bus crash in Georgia that killed several college students. I was pondering the fact that life is so brief, and none of us know when we will be taken, or what will take us. Even now, it's easy for me to think the question is pretty much answered, but ultimately I don't know what will take me home, or when. I know I may sound hopeless or morbid to some of you, but that is not the case. I am preparing for a possibility of death. I think it is only prudent to do so in my situation, and honestly, I think it is prudent for everyone to do. None of us are immortal, and care should be taken to consider what comes next. I shared with a friend recently that I had been reading several articles on John Piper's website ( regarding Heaven, as though studying up on some country I'm visiting on vacation soon. It's just all of a sudden become a very interesting topic to me. Sad that only the prospect of death has me at this place, because I believe as Christians we should be focusing on the fact that our stay on earth is quite brief and very temporal. Very little matters when you view it in light of eternity.

I told my husband the other day (who has kept me faithful all these months) that I am finally learning how much God hates sin. I HATE cancer. I am sick of it. And I realize cancer is just one more visible sign of sin in this world. So ultimately, I hate sin. And how much more does God hate sin? I am also realizing how helpless I am in this battle against AML. Just as helpless as I am, totally depraved and living in sin from the second I was born. Ultimately God is the cure, and He chooses to show mercy and grace as He wills. (Titus 3:5) He has already rescued me from the ultimate death of sin, and I trust He can rescue me from AML if He chooses. But if not, ultimately the price of sin has been paid, and I know I am secure, and I am thankful every second for the gift of faith. "My faith is like shifting sand, so I stand by grace." - Caedmon's Call

We've decided against pursuing treatment out of state at this point. A change in environment right now poses significant risk, and we've seen the Lord pretty effectively close the doors on a few options we were considering. The Phase One clinical trials my doctor mentioned are being conducted at Ohio State University. After speaking with an RN who heads up the AML trials there, we've decided against that route at this time. She pretty much summed it up with the statement, "If they don't kill her, which they probably will, she'll wish she were dead." We're not at that point yet. I think it is a noble thing to dedicate your body to science before your death, but I also know the people who do so have no other options.

At this time we are trying to get insurance approval for the chemo drug Decitabine, which is being used in conjunction with another drug at a trial in Ohio. It was recommended to us by Ohio and my local team as an "easier" (i.e. side effects) chemo drug, but they said they are having a hard time getting it approved by insurance for use at Barnes or MU (University of Missouri at Columbia, to clear up some confusion). We contacted the insurance company and they said they would look into covering it, so the social workers here are working on it. I hope to have an answer early next week, and if it is a yes, will probably go back into the hospital very soon. I'm already neutropenic, so there is a possibility I will end up there from an infection rather soon, anyway. It's only taken a few days for me to be reminded of how swiftly this disease works. Assuming all goes well with the chemo, I would also receive a stem cell booster from my brother -- some frozen, and possibly some newly obtained. I am being told that it is doubtful this will put me into remission. At best it may buy me some time. We'll see.

We've also been offered a second stem cell transplant by Ohio State. I don't know how feasible an option this is. Right now I'm kind of considering it a last resort, and again, I'm not quite there yet.

In the meantime, I'm getting regular bloodwork at Ellis Fischel. I'll need regular blood and platelet transfusions over the next weeks. (Thank you again to those who donate blood products, I have certainly mooched quite a bit over the past months. Barnes always emphasized a special need for more platelet donors.) I'm also continuing to use the Mannatech products, along with several other natural supplements and diet changes. Those who know me best know what a challenge this has been for me. I have yet to see an effect in my bloodwork, but it's only been about a week.

Thank you for your continued prayers on our behalf. I know the Lord hears them. Please always remember that even if I do not continue here on this earth, I will achieve ultimate healing in heaven. One way or the other, your prayers will all be answered. It is a miracle that we are not consumed day by day. (2 Cor. 4:16)