The 1040 Window

On January 10th, Aaron had a blood draw at UCLA that gave absolutlely no indication of a relapse. Dr. Paquette said they tested for everything and all tests were negative. When we took Aaron to the ER because he was acting funny (on Sunday, January 28th), Dr. Paquette was completely shocked to discover that Aaron had relapsed. So, just hours after having our planned Praise God Party to honor God for the miraculous healing He did for Aaron, we find out that Aaron is again fighting leukemia. In fact, as we were praising God collectively last Saturday, the leukemia was returning. What are we to make of that? Didn’t we ask God to smite the cancer and didn’t it appear that He had done so? What about the timing of the recurrence? Does any of this suggest that we should not continue to trust God for healing?

I don’t know the answer to the many questions that pop into our heads about Aaron’s relapse. But I do know that we are to continue to trust God for complete healing. For me, when I think about the events of the last year, I think immediately about the Israelites, do you remember them? God was concerned about the misery and suffering of His people in Egypt so He decided to rescue them by blessing them with their own land (Exodus 3:7-10). So, God busted them out of Egypt in a way that was so like His ways–completely not understandable to us. We wouldn’t have come up with a plan like that: sending 10 plagues and having His people cross the Red Sea on dry ground. The Israelites saw the miraculous power of God but what happened next? They praised God for awhile but then started complaining, grumbling and doubting. When God brought them to Canaan, the land He promised, they sent 12 spies in to look around and 10 of those spies determined that it was impossible–God could never help them defeat the people living in that land. They went so far as to say they should have stayed in Egypt or died in the desert. They were untrusting and ungrateful and God did to them what they said that He would–they would die in the desert and not be allowed to enter in (Numbers 14:28).

So, I use the history of the Israelites to learn about how God works and what He wants. He wanted to rescue the Israelites and give what is good to them. He did that by His omnipotence. He did that in His own way and His own time. He lovingly cared for, protected and provided for His people all the way along. These are the things I have seen Him do for us: He rescued Aaron, He has protected Him, He has provided for us.

I also want to learn about what my response should be to God. The Israelites did praise God but they turned to distrust, contempt and ungratefulness. Even though we are weary and we don’t want to be here, I REFUSE to stop trusting God. I am grateful for all He has done, I remember the miracles He has done and I know that He is still able to do the impossible. Just because this is taking a long time or it doesn’t look like a good thing by human standards or this is not the way that we would expect God to act, that doesn’t mean He is not working or that He is less worthy of our trust. I see Him working: His protection, His mercy and His provision are evident everyday. I personally believe that God was so pleased with our shouts of praise to Him on Saturday, that He decided to bring on the smiting. I believe God decided in His mercy to not drag this out for us but to finish the miracle that He started.

So, I ask you, please stand with us in trusting God and being humbly dependent on Him. Don’t say He can’t and don’t say He won’t. Don’t question His goodness or His ability. Remember what He has done. Trust Him to do it and He will–Mark 11:24.

Update on Aaron:

Dr. Paquette said that the leukemia might not have ever been in remission. When Aaron had the two bleeds in his brain last May, some leukemic cells from his blood might have gotten into his brain and have been hiding out in there. Thus, producing the mass of leukemic cells that they found a couple of days ago.

He is on a high dose of chemo and will receive six days worth of it instead of four.

He had a high powered MRI today and the results should be back by tomorrow (I think).

We are looking at possibly doing an adult stem cell transplant for Aaron in a couple of months. On the international database of stem cell donors (which consists of 12 million people), there are only 2 possibilities of matches for Aaron. They will contact those 2 people and see if they are willing to be tested further to see if they are true matches for Aaron. We are working on having an adult stem cell donor drive in Ojai on March 11th. It would require a simple blood test. For anyone interested, stay tuned for details and visit www.marrow.org in the meantime. That website is also helpful for anyone who would not be able to make it to Ojai or who is interested in donating now. You can find a list of donor centers or upcoming donor drives under “How to Help.”

Aaron is starting to feel pretty crummy-he is receiving his 4th dose of chemo right now. I am so proud of him. He has a good attitude and trusts God so much. He continues to be a trooper. I love him so much. He is amazing.

We appreciate everyone’s calls and stopping by. It is hard going from getting back to normal life to picking up immediately and coming down to UCLA indefinitely with only the clothes on our back. It is a difficult adjustment and everyone’s prayers, calls, visits, platelets, etc. are appreciated more than words can express.

Dr. Paquette came by a little before sundown as a light rain began falling. We cheered him like a rock star. In the medical morass of uncertainty, Dr. Paquette brings, if not certainty, at least direction. And for now at least, the direction is clear.

For the next 6 days, Aaron will receive as much Cytarabine as he can tolerate. The side effects (like liver damage and cardiac failure) of all other possible established mutant poisons, such as Mylotarg and various anthrocyclines make them unsuitable.
When as many blood and stem cell mutants as possible are destroyed (hopefully enough to return Aaron to the state of remission [where our previous residency was a far cry from permanent]), a spinal tap (fancy name: lumbar puncture) will be performed.
Should tests on the cerebrospinal fluid reveal the need, poisons will be induced into the brain and its nervous system.
During the next couple months, while the poisons are laying waste as much of the enemy as possible, a more permanent solution will be sought: Stem cells from a donor old enough to enlist: enlist to fight terror from abroad, or enlist to fight terror from within.
More information will follow, much of which can be found at www.marrow.org

Observing the medical decision-making process is akin to watching an amoeba eat. Somehow, the shapeless, amorphous creature oozes in the general direction of food, little by little surronds the food and eventually the food and the amoeba become one. Around midnight, Aaron spiked a fever. The night doctor called to assess the fever confirmed that indeed a decision had been made late yesterday to begin induction. The decision had translated to orders, which effected hanging a third bag on the I.V. pole (joining the normal saline and some Arm&Hammer dealing with blood already too acidic). The New Year’s first poison volley, Cytarabin, begins to flow at about 3:00 a.m. Dilaudid, Benedril, Decadron, Posaconazole, antibiotics, magnesium, phosphorus, and insulin are variously administered to address constant and growing pain, allergic reaction to platelets, Chemo side effects, fungus, bacteria, electrolyte imbalance, and blood sugar spiking at 200. No picc line has yet been installed; blood draws are getting more difficult and painful. Another MRI is scheduled for later today, and the on-again-off-again spinal tap has been on and off yet again. There is agreement, even without the spinal tap, that the brain blob is not an infection. It is a mass of leukemic cells that will be fought, along the the mutant blasts now filling his bone marrow, with poison.