From Mayo we are starting to hear some options. We are still gathering information, but I think all of us are concerned that we don't have much time. For so many new spots to show up after only 6 weeks, we feel we need to take that into consideration in our decisions about where we go from here. We need to think about what is best for all of us, what memories we want to live with, if that becomes what we have of Drew. Memories of being sick in a hospital are some we don't need more of. The one option that we are considering would target a specific mutation in the DNA of the cancer. There is working being done, and they are seeing some success in slowing down the cancer, by using a drug that inhibits this ALK mutation. This targeted therapy would be taken orally, out patient. It would not be as hard on him as much of what we've done. But first they'd need to test his new tumors for this mutation. So we are working on scheduling a biopsy of the tumors next week. Anything more invasive, we feel wouldn't be fair to Drew. Drew has done everything we've asked of him, with a smile on his face. How can we, in good faith, ask anything more of him, when there really is little hope it'll work? We can't. I think I would equally regret putting him through hell in his final weeks in some hospital away from his family, as I would wonder if there was something we could have tried.
Since this treatment we are interested in would be oral, we are talking about pulling his central line at the same time. Make-a-Wish has begun the process of coordinating a wish for Drew, and we think it would fit with our goals of enjoying him and ourselves as much as possible to have the line removed. I feel like it's a symbolic step. Yes it can be put back in, but by taking it out, we are making a statement. It is somewhat exciting to think about the freedom no line would give us, but also obviously really scary. Please pray we make the right decisions this week. That God will give us wisdom through our emotions and grief.
Going into Monday, I felt like I knew this was what we were going to hear. For some time before I could see God was hinting that this was how it would go. Devotionals, chains of thoughts in my head, things I would come across in my daily life seemed to not be telling me He would heal Drew, but that I can trust Him anyway. Looking back, this whole time He was preparing us. At Easter time, when I really got that death has no power over us anymore because of Jesus' death and resurrection. During the summer when He was with us so intimately through Drew's suffering and reminded me of Jesus's suffering. And then this fall when we found out the cancer was back, He reminded me how upset and broken Jesus was over what he faced, but that he did it anyway. Example after example from this year shows me that God is always one step ahead of us. Experience tells me what I think will be unbearable now, may be okay when I get there. And that comforts me when I dare to think ahead at what may lie waiting for us.
A year ago Drew was in such a terrible place, we were probably closer than we even know to losing him then. But God has given us a whole year with him, that for the most part, truly, has been wonderful. Drew has just become such a real person this year. Grown so much, developed so much, amazed us so much. We've gone to a Twins game, toured a cave, visited family, walked through a creek....I'm sure most think this has been the worst year of our lives, and at times I would have agreed. But I can honestly say that we've had the best times of our lives this year too. We've truly enjoyed each other. We've been flexible. We've laughed. We have grown so much. I am so grateful for this year.
Cancer hasn't taken anything from us, it doesn't have that power. None of us is guaranteed anything from life. We aren't "suppose" to have anything. When I start to think in the "should haves" or "supposed tos" I stop myself. That kind of thinking leads no where, and isn't true. Cancer actually has given us a lot if we want to think of it that way. It's given us perspective. It's given us a purpose. it's given us a deeper faith. It's given us a deep appreciation for the little things in life. It's also given us a lot of pain, grief, and heartache too to be fair. But ultimately I know that Drew will fulfill the purpose he was made for. He will live exactly the days he was suppose to, not necessarily how many days I might have thought he would. When I've cried this week I know I'm crying for myself. For the loss of what I thought I was going to get to enjoy with my son, not for Drew. He will not suffer anymore. He will get to be in paradise. What more could I want for him? God gave Drew to us for this time, and while we wish it was longer, I will never be sorry He gave him to us.
I still have had thoughts of "why us?" and "what did I do wrong to deserve this?" Probably naturally we are tempted to think that. But I feel God has corrected me. "You did nothing wrong, Heidi. It's what you've done right. I have chosen you for this purpose because you've shown you can do it." Who am I to argue with God? If I've somehow earned this task, then I better do the best I can, living up to the calling. Still, some days I wish He would have picked someone else. I wish He didn't think so highly of me to put this on my plate.
Once again, we haven't officially decided anything yet. But we feel God did answer one prayer Monday--that the path He would want us to go down would be clear. Right now it seems pretty obvious to us that current medicine will not cure Drew. We will continue to listen to what the doctors have to say, and consider every option thoroughly, with the big picture in mind. But we reluctantly feel God's leading to enjoy him, and have learned to listen. I will continue to pray every day, and as you to continue as well, that God will indeed work a miracle in Drew and heal him this side of heaven. But I know in my heart he will be healed either way. And I find comfort in that.
Jesus said, "Therefore you too have grief now; but I will see you again, and your heart will rejoice, and no one will take your joy away from you" (John 16:22). Thank you Jesus for that promise!
This week we've still had to do life. Ship Christmas gifts, fold clothes, grocery shop...but with the goal to make each day count you can chose joy even in these mundane tasks. I even let Drew do the little shopping cart at the grocery store! Usually I avoid these at all costs. But you know, why not?
~Heidi
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