DLI #2 Update

So far no GVHD. I wasn't feeling great a few days after the infusion, and wondered if I was starting in with something, but it cleared up without treatment. I guess it's full speed ahead with next week's chemo and the final DLI on the 12th of June. I'll meet with Dr. Perry in the morning but I don't expect any changes to the plan.

Today finds me at SEU (Symptom Eval Unit) in the University Hospital. Due to the holiday, Ellis Fischel's AIU bumped me here for a day of platelet and blood transfusions. I haven't been here since I left last October, headed to transplant. It's been really great to see my old nurses, but it has also brought back a flood of memories, some I thought I had forgotten. When the hospital meal tray arrived at lunch I couldn't even touch it. Everyone remarks on how good I look, and I remember that "death warmed over" was probably a compliment when I left last year. Most of the nurses have never seen me with hair or some meat on my bones.



We're celebrating birthday week at our house -- Brandon and I both have birthdays within the same week and Gary is 18 months old today. We celebrated his 1 1/2 birthday yesterday -- yes, 1/2 birthday. I decided since I missed the first and don't know what will be going on with the 2nd, we were gonna woop it up for his 1 1/2. I'm excited about turning 26. Last year I declared to anyone who would listen how old I was getting and that I was never going to celebrate another birthday...what a difference a year makes. WIthin a month of that statement I was certainly eating my words. I said early in my blog posting that I had hope to see my 30th birthday -- and I still cling to that hope.

DLI #2

The 2nd DLI is finished. We infused 50 million cells this time. It was my first experience with frozen cells, and having heard much about the taste of the preservative used in the freezing process I wasn't quite sure what to expect. It's weird. That's all I can really say about it. They're keeping me in observation for about another half hour, and then we should be able to head home. It has been a long day.



The cryo-lab storage container for the cells.

My next round of chemo begins June 4th and the next and final DLI is scheduled for June 12th, assuming I don't present with GVHD in the meantime. I spoke to the doctor today about the possibility of doing a second allogeneic stem cell transplant if the DLIs are unsuccessful, if we are able to keep my blasts low using Decitabine. He said he would think about it. It helps that I have so many siblings and matches readily available. I am beginning to realize I am a rarity at this point. The doctor said that relapse immediately after transplant usually has a very fast disease progression, thus the two month prognosis I was given. I think they are all surprised by where I'm at right now. I've never been the optomist so I am hesitant to get too emotionally involved in the fact that things seem to be going o.k. right now. I'm still very, very sick. I still require seemingly constant tranfusions...but I am alive. Nothing short of a miracle at this stage.

Thanks so much for all of your prayers.

Transplant +6 months

Today marks the six month anniversary of my transplant. I would love to be sitting here in a state of remission, but even though I'm still dying I thought it was worth noting. The odds are certainly against me to make it a year past transplant, so I value each day. I try to remember that I've beaten multiple odds just to be at this point, and that I am an individual, not a statistic. I was essentially killed four times in as many months last year...sometimes I wonder how it is possible that I am still alive.

I've been using a much smaller bandage on my central line, giving the majority of the skin some time to heal. It seems to be doing so, slowly but surely. I'm still not sure what to do about the skin immediately around the site. Someone mentioned an alternative bandage that I am not familiar with -- I need to check with my doctor to see if it is an option. I was originally told central lines only stay in about six months, and I'm past seven months now, so I'm not sure if they really know what to do once the skin starts rejecting adhesive. Thanks for your prayers. I'm really grateful that the site itself is remaining free of infection. My counts will be falling this week, so it's especially important to avoid infection.

Friday at 8 a.m. I'll be at the Siteman Cancer Center (Barnes) for my next DLI. It will be a larger infusion of cells this time (last time was 10 million) and the same prayer requests apply. It would be "good" to have manageable GVHD and the Graft vs. Leukemia effect. I will be honest and say I am dreading Friday. Anyone who knows anything about GVHD knows why. It's like holding a loaded gun to your head and pulling the trigger. I just can't help but feel a little crazy for going through this again, but I know I don't have any real options. Times like this I stop and remember I'm dying, and any benefit outweighs the risk at this point. I'm anxious to see what my labs do this week. We've been told repeatedly that it takes at least three months to see an effect from Decitabine, and since I've completed three courses I'm really hoping the blasts stay down this time and don't bounce back up again. I watched a documentary on Discovery last week called "Living with Cancer." There was no mention of God at any point during the show, but other than that I found the comments by those being interviewed echoed a lot of my own thoughts. Lance Armstrong talked about taking a crash course in oncology, and always getting copies of his labs and test results and viewing them like a score in a competition. I've approached leukemia in the same way -- often living and dying emotionally by the latest results. Not sure if that's the best thing to do, but to fight is to live in my opinion.

Prayer Request

I've developed a pretty nasty rash around my central line (Hickman). I mentioned it as a prayer request before -- this is about ten times worse and I'm really worried about infection. I had the doctor check it this morning while at the hospital for chemo and he said it looks o.k. so far, but if I start running a fever or if it looks infected I'll need to start an antibiotic. Worst case scenario, since my counts will be falling from chemo, I could end up in the hospital on IV meds and need to have the line removed.

I do not have a latex allergy, it's just skin that has been covered up for seven months that has had enough. I've tried every type of bandage that they make. Hypafix seems to be the best option right now because the tagaderm is condensating on the inside due to humidity and a wet dressing encourages a fungal infection, so I can't go there. It's extremely uncomfortable and somewhat swollen -- I'd really appreciate prayer that it will clear up quickly.

Also, to update, today was day two of chemo. I started out the week with blasts at 2%, which is the lowest they've been pre-chemo, I believe. I think this round is hitting me harder than the previous one, but time will tell.

Thanks for your prayers.

Amy

A Sovereign God

I'd like to begin with an excerpt from "Christ and Cancer" by John Piper.

God controls who gets sick and who gets well, and all his decisions are for the good of his children, even if they may be very painful and long-lasting. It was God who subjected creation to futility and corruption, and he is the one who can liberate it again. In Exodus 4:11, when Moses refused to go speak to Pharaoh, God said to him, "Who made man's mouth? Who makes him dumb or deaf or seeing or blind? Is it not I the Lord?" Behind all sickness is finally the sovereign hand of God. God speaks in Deuteronomy 32:39, "See now that I, I am he, and there is no God besides me; it is I who put to death and give life. I have wounded and it is I who heal; and there is no one who can deliver from my hand."

But what about Satan? Isn't he the great enemy of our wholeness? Doesn't he attack us morally and physically? Wasn't it Satan who tormented Job? Yes, it was. But Satan has no power but what is allotted to him by God. He is an enemy on a chain. In fact, for the writer of the book of Job it was not wrong to say that the sores afflicted by Satan were sent from God. For example, in Job 2:7 we read, "So Satan went forth from the presence of the Lord, and afflicted Job with loathsome sores from the sole of his foot to the crown of his head." Then after Job's wife urges him to curse God and die, Job says, "Shall we receive good at the hand of the Lord and not receive evil?" And lest we think that Job erred in attributing to God his sores afflicted by Satan, the writer adds in verse 10, "In all this Job did not sin with his lips." In other words, it is no sin to recognize the sovereign hand of God even behind a disease of which Satan may be the more immediate cause.

Satan may be sly but on some things he is stupid, because he fails to see that all his attempts to despoil the godly are simply turned by God's providence into occasions for the purifying and strengthening of faith. God's goal for his people in this age is not primarily to rid them of sickness and pain, but to purge us of all the remnants of sin and cause us in our weakness to cleave to him as our only hope.

My son, do not regard lightly the discipline of the Lord, nor faint when you are reproved by him; for those whom the Lord loves he disciplines, and he scourges every son whom he receives . . . he disciplines us for our good, that we may share his holiness. All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness. (Hebrews 12:5, 6, 10, 11)

All the affliction that comes to the children of God, whether through persecution or sickness, is intended by God to increase our holiness by causing us to rely more on the God who raises the dead (2 Corinthians 1:9). If we get angry at God in our sickness we are rejecting his love. For it is always in love that he disciplines his children. It is for our good and we must seek to learn some rich lesson of faith from it. Then we will say with the psalmist, "It was good for me that I was afflicted, that I may learn thy statutes . . . I know, O Lord, that thy judgments are righteous, and that in faithfulness thou hast afflicted me" (Psalm 119:71, 75). That is my fourth affirmation: ultimately God controls who gets sick and who gets well and all his decisions are for the good of his children, even if the pain is great and the sickness long. For as the last verse of our text, Romans 8:28, says, "God causes all things to work together for good to those who love God and are called according to his purpose."

http://www.desiringgod.org/ResourceLibrary/Sermons/ByTopic/32/243_Christ_and_Cancer/


I have been learning a lot about God this past year. I have always professed belief in a sovereign God, but the events of this past year have forced me to live my theology out loud. Easy enough to believe in a sovereign God when the way is easy, the struggle comes when life gets hard. This past week I have also been focusing on realizing that a God who does all things to His ultimate glory is also a loving God who understands my pain when no one else does. Spurgeon writes the following in Morning & Evening:

Believer, rest assured that the heart of Jesus cares about your meaner affairs. The breadth of his tender love is such that you may resort to him in all matters; for in all your afflictions he is afflicted, and like as a father pitieth his children, so doth he pity you. The meanest interests of all his saints are all borne upon the broad bosom of the Son of God. Oh, what a heart is his, that doth not merely comprehend the persons of his people, but comprehends also the diverse and innumerable concerns of all those persons! Dost thou think, O Christian, that thou canst measure the love of Christ? Think of what his love has brought thee—justification, adoption, sanctification, eternal life! The riches of his goodness are unsearchable; thou shalt never be able to tell them out or even conceive them. Oh, the breadth of the love of Christ!

Through a records request we discovered this past week that I do have chromosomal abnormalities -- I've been told all along that they were not able to find any. A FISH test done at Barnes to check engraftment after transplant also showed a specific abnormality that allows us to know the specific type of leukemia that I have -- t(11;19)(q23;p13.1). It is still categorized as AML M4, but goes by the name mixed-lineage leukemia (MLL) and in my particular case could present as either MLL-ELL or MLL-MEN (virtually identical). It is rare, affecting less thant 2400 people per year, with a median age of 19 and a median life expectancy of 6 months (most cases are infants, though all ages are susceptible). The chromosomes also indicate that I had a form of MDS prior to AML, as I had suspected. MDS can last for months or years before progressing into AML, so it is impossible for us to know how long I have really been sick. In light of this new information, we spent the weekend researching and contacted a doctor/professor currently studying this specific type of leukemia at the University of Chicago. I asked if he could point us to any specialists or clinical trials aimed specifically at MLL, and he said he wasn't aware of any, but that my current treatment "appears appropriate and state of the art." Decitabine is also the drug of choice per Harvard for treating this particular type of MLL. We consulted with my local oncologist yesterday and it is his opinion that the Decitabine is definitely keeping the disease at bay, though it is not yet achieving remission. We are going to continue with this course of chemo and the DLI as planned. I'm not sure what comes next if the Decitabine proves ineffective. My doctors are still doing research to ascertain the best options. Obviously it is our prayer that the Decitabine will prove effective in putting the disease into remission. It has been a gentle chemo, which I have greatly appreciated.

I have been amazed to realize that once again, God has gone before, and even though we just discovered this information, I am already on the treatment of choice. He truly is the One who heals -- the One who preserves our every breath.

I continue to need regular transfusions. I figured out yesterday that it is taking approximately 12 donors per month to keep me alive. They are strangers that I will never meet -- and a simple "thank you" seems insufficient. There are over 200,000 people currently living with forms of blood cancer. Do the math -- and please donate blood or platelets if you're able.

As always, thank you for your prayers.