This is Justin Ozuna, I am writing as a follow up to the appointment I had two weeks ago. You had suggested that I contact you for the results of the tests that were performed to indicate future treatment. If you can, will you share with me the tests performed and the outcome of the tests? More importantly, what is the game plan moving forward?
Thanks. Unfortunately the bone marrow shows that all cells have the Philadelphia chromosome. In addition, there is a mutation (a change) in the Philadelphia chromosome that is not expected to respond to any of the drugs available today. There are experimental drugs that might work in this condition. I suggest we try one of these and make that change soon.
Although I had anticipated that this was the case, you’re never really prepared for it. Three months ago, only 84% of my cells showed the Philadelphia chromosome (in essence, my Leukemia). At 100%, it is a clear indication that my medicine has lost the battle. After reading this email, I spent the next twelve hours trying to wrap my head around the instinct to believe that it was my fault, that I failed the test.
Self-pity isn’t something I entertain very often. In fact, as soon as I start to recognize those types of feelings, I know that it’s time for perspective. So many people have it so much worse. And if my purpose is to spend these moments feeling sorry for myself, I will miss out on the rich and valuable lessons I can take away from them. I will be less compassionate, loving, understanding, enriching, and full of wisdom. Those missed opportunities bring greater sorrow to me than self-pity. However, for an hour Monday night, I finally allowed for a moment of self-pity. I had gotten back into school, I had found a foothold on momentum, I was making progress, and once again, I was hit by an all too familiar force. The steps were steep, and the fall was violent. I cried. I needed it. I was crushed. Not again.
Yes, again. The mutation has resurfaced and within the next month I will be heading to Houston for treatment. I will be put on a protocol referred to as DCC-2036, an investigative agent that has been effective against the t315i mutation. I will be in Houston for a month, as I assume I will have to be at MD Anderson every day. After that month, I will have single day follow up visits once a month. That’s about all I know as of right now. My mom and brother will travel to Houston with me next week to meet with Dr. Cortes and the research nurse to find out more information. I haven’t decided when I’ll begin the protocol, but I’ll keep everyone updated.
The past 36 hours have been a whirlwind. I’m finally at the place where I’ve at least pulled myself back up to my feet. I look up at the mountain as I’m once again resolved to move ahead, one step at a time, absorbing valuable lessons of Christ, never quitting. This is my blessing, a blessing that will be revealed when I make someone smile, laugh, or leave them with a word of encouragement. Given the choice, I’d rather not have to endure all of this, but that’s the downside of living in a fallen, broken world. All of the contrasts of hardship and suffering make vivid the grace and mercy of a loving, compassionate God. “To endure” means to experience the highest of highs and the lowest of lows, but to always come out of it with a greater appreciation for all that you’ve been created to experience. As much as I want this to be simple, it is difficult and complex for a finite mind. I am, therefore, given a reason to endure, so that one day I may look back and understand it all from an infinite perspective. That is a source of my strength.
So stick with my blog. I imagine I’ll be pretty active over the next few months. As things change, they’ll be posted. Thank you for all of your thoughts and prayers.