I would imagine that most of you know what has been going on with us for the last couple of months, but it's way past time to catch up the blog. The month of June was fairly uneventful. I was taking Pharmacology and Pathophysiology in a whirlwind, short summer semester that just about made my head spin. As of last Thursday, both classes are now successfully completed.
(I regress a bit...but it's for clarity.) Since Nick's transplant in January he has been taking Cyclosporin, an anti-rejection drug. It allowed his body to fully settle in to his immune system's change of command that was brought on by the stem cell transplant. When we came home in April, they began slowly weaning him off of the Cyclosporin. Most people have multiple episodes of the rejection reaction, GVHD, but Nick had only had a couple of minor rashes due to GVHD while we were still in Nashville. His doctors had marveled that he had had no reaction since coming home.
(Fast forward back to a few weeks ago.) Three days before he was to be completely off of the Cyclosporin, he had a reaction. I got home that morning from having taken an 8:00 a.m. exam, and he had a rash. It was not a big rash, but coupled with the upset stomach he had had all weekend, I knew we needed to go to Vanderbilt. GVHD manifests in the GI tract, on the skin, and in the eyes. Nick called them as we were preparing to walk out the door, and they asked us how soon we could get there. When we left Jackson he had a rash on his leg about the size of a grapefruit. When we got to Nashville he was literally covered head to toe. He kind of looked like one of the Chic Fil-A cows...except his spots were RED and white.
The doctor and nurse-practitioner both told us that it was so great that we came that day because at the rate the reaction was progressing, they were not sure if it could have been reversed if we had waited another day. (Thank you, God!!!) The treatment for this reaction is to re-start cyclosporin at therapeutic levels and re-start high dose steroids. If that was not successful in eliminating the rash within 3 days he would need to start photo pheresis sometime in the future. Nick's doctor said that he would really like for Nick to go ahead with photo pheresis, but since it is so very, very expensive, and not within the protocols for first-line treatment, insurance would not pay for it until we waited out the other treatment...BUT...there was a clinical research study that had just started. It was studying whether photo pheresis should be first line treatment, and Nick might be a candidate for the study.
The doctor explained to us that photo pheresis had been used since 1991, and that it had been clinically shown to provide much better, long term quality of life for leukemia survivors. In this process...three times a week... they would hook Nick to a machine; remove some blood; spin it down to separate the red blood cells, plasma, and white blood cells; give him back the red blood cells & plasma; treat the white blood cells with a cytotoxic agent called MOP-8; expose the white blood cells to ultraviolet light (which activates the MOP-8), and give him back the mixture. The MOP-8 then acts as a marker to target the white blood cell that are misbehaving, and Nick's immune system would kill the renegades and train the other white cells to not misbehave in the future. This treatment has been successfully shown to reduce the incidence of GVHD exponentially. If he were accepted to the study and randomly chosen for photo pheresis, the research study would pay for the procedure and our insurance would cover the medicine.
As you might have guessed, Nick was accepted to the study and placed on photo pheresis. So, now we are once again traveling I40 east & west...2 to 3 times a week from July, 2012 thru January, 2013. Nick is feeling very well, and has even made the drive all by himself a couple of times. He is so ready to get back to normal life (whatever that is??????)
A couple of weeks ago I started following this Bible reading plan that takes you through the Bible in chronological order. I don't remember ever having read it through like that. So, I started. I am now in the book of Job. As you probably know, Job was a man who trusted God fully, and was extremely blessed in all that he did. God trusted in Job's character as well. As the story goes, one day satan asked God if he could test Job. The evil one believed that if all of Job's blessing were taken away he would curse God and turn away. So, God allowed Job to be tested, but stipulated that he could not harm Job physically. In a single day all of Job's children and possession were taken away, but Job did not sin. He simply trusted.
Seeing that he was a failure, satan once again asked God for permission to test Job. God granted the second request, but said that satan could not take Job's life. So, Job found himself covered in boils, rotted flesh, and being eaten upon by worms. Job's wife told him that he should just curse God and die, but Job remained faithful. Within the long story of Job's plight he was visited by a number of friends, and it is during such a visit, in the text, while a "friend" is telling Job that he really needs to get some wise counseling, that I found the following tidbit:
Job 8:13-15 (NIV) "Such is the destiny of all who forget God; so perishes the hope of the godless.
14 What they trust in is fragile; what they rely on is a spider's web. 15 They lean on the web,
but it gives way; they cling to it, but it does not hold."
This scripture jumped out at me like a flash of lightening..."Such is the destiny of all who forget God..."
I stopped reading and prayed and thought. Have there been times when I have focused on our plight instead of being encouraged by the victories? Yes. Have there been moments when it seemed like this time period of trial would never end? Yes. However, even though it has been very hard at times we have not forgotten Who has taken us through this valley, and blessed us in the midst of it. We have never leaned on God and found Him fragile...Oh no...to the contrary! He has been that immovable force, that rock, that shield, that presence that we can neither deny nor understand. Why did my son have to deal with cancer? I have no idea, but I do know one thing: We are not without hope! We will not forget! (O.k., maybe that's two things??)
Whatever it is that you are facing today...you do not have to be strong enough on your own...just please do not forget where your hope lies. Regardless of how it feels, you have not been forsaken. You are not being punished, and you are very much loved...right where you are. You may not feel strong enough to do much. So, just start by remembering.
It is well, and we will remember that!
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