March 12, 2013

Daron's Decision

In June 2009, Daron started a new medication. This medication was given to him every 4 weeks via infusion at the VA in Ann Arbor, MI. We knew going in that there was a big side effect that hits 1 in 250 people. We knew that we would not be able to test for this side effect until him had been on the medication for 2 years. So in January 2012 the doctor finally did blood work to test for this side effect. The results led to a tough decision from Daron & I. First, let me tell you about the side effect.

The side effect is called Progressive multifocal leukoencephalopathy (PML). It is "a disease of the white matter of the brain, caused by a virus infection that targets cells that make myelin--the material that insulates nerve cells (neurons)". The Polyomavirus JC virus that causes PML is carried by a majority of people who do fine with it &; are never affected by it as long as they have a good immune system. Right now there are no medications on the market to fight this disease. There is a drug being studied, but it is not on the market. There is a possibility that a plasmapheresis (like dialysis but with the blood) might help clean the antibodies out of his blood, but there is no guarantee & it's a long procedure. The down side is that this disease has a 30-50% fatality rate in the first few months following diagnosis & those who survive PML can be left with severe neurological disabilities. (Information found here)

I know that is a lot to take in for those who know & love Daron. Here is where his decision comes in to play.  Daron's doctor told him that it is strongly recommended that he end the infusion & start a new medication that has been on the market for awhile. The new medication is a once a day injection that may or may not continue to keep his MS stable. So Daron & I talked about all of the options. More importantly we prayed about everything. On Friday March 1st, Daron made his decision to stop all MS treatments. He knows that this decision will be tough for some people to understand, but we are taking a step of faith. He wants to follow the plan that the Great Physician has for him & live out the rest of his life comfortably. All of the trips to Ann Arbor every 4 weeks are physically draining on him & it takes a day or two for him to get back into his normal routine again. On top of that, his body, min & spirit are getting tired.  He has been fighting for a long time & he is ready to rest. This is not him giving up at all! This is Daron resting completely in the arms of His Savior & trusting the perfect will of God 100%.

There are some things to keep in mind with this decision. This decision does not mean that Daron will pass away anytime soon. He could have another 30 years on this earth, but we don't know. This decision does not mean that Daron just signed his own death certificate. He's not giving up, rolling over & waiting to die. He is taken control of his health & making the best decision for him. This decision means that Daron no longer wants to take MS medications in order to keep the MS under control. Each medication has it's own side effects & no medication has a guarantee that it will control the MS. We do know that Daron will have another MS relapse in the next few months & that he will become more disabled during this time. Daron knows that will happen, but he knows that God is in complete control of the MS - not the other way around. We also know that Daron has had a very clear mind during this entire process. That is a miracle in itself & I am grateful for that!!

One thing we don't know is where Daron is at in the process of developing PML. There are many different scenarios that could be in affect right now, but I don't want to assume or speculate on something that I don't know much about. There are a few things that Daron could request in order to try & see where he is in developing PML, but they are invasive & nothing that he wants to go through. 

Please continue to pray for Daron during this time. We know that God Himself is in complete control over this entire situation & we trust Him in all things. I just ask that you continue to pray for emotional & spiritual strength for Daron during this time. 

Please pray for Taylor & I as we support Daron 100% through this time. When Daron told me what his decision was, I knew that he needed me to advocate for him a lot more. As his health declines, my caregiver role will become more prominent. Please pray that I will continue to have the strength that I need to handle everything. 

We are so eternally grateful for all of our friends & family members who are behind us each step of the way. I know that this entire journey would be more difficult if we were going through this alone. Thank the Lord that we are not alone in this!! Each one of you mean so much to us & I know that I will never be able to properly thank you for the numerous ways that you have encouraged us. I pray that God will bless each of you & your families beyond your comprehension for all for the blessing that you have been to our family. Please continue to send encouraging cards & notes to Daron (his address is on the right hand side of the page). He keeps each of them & is always reminded that he is loved by so many people.  

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