As far as the big picture goes, we’ve made some decisions. Last post I shared our feelings and motivations behind our decisions, but let me also give you the specifics. All the options for treatment which are close(Minneapolis, Wisconsin) are in Phase 1 of trials. This means they are still figuring out the dosage for the drugs and don’t have much preliminary data. We feel that is too much of an experiment for Drew right now, when we don’t feel we have a lot of time to waste. And the nearest Neuroblastoma center is in Chicago. If we chose to go there and see what they have to offer, all of Drew’s care would have to be there. We decided a while ago that it would be best for all of us to stay as much together as we can, and not be split up all the time. And again, all the other treatments that are showing progress and are further along in trials, like MIBG therapy, require stem cells for rescue after treatment, which we are out of. So that leaves the targeted therapy I discussed before. Which actually meets all of our criteria we were looking for—can be done at home, isn’t too hard on him, and shows some real evidence that it’s worth doing. Our choice seems pretty clear. We’ve decided to pursue this therapy. So tomorrow the biopsy is scheduled so they can test his tumors for the mutation in the first place. It will take two weeks at least for results to come back. So in the meantime, we won’t be doing anything else and have also decided to remove his central line at the same time as the biopsy. Please pray that the procedures go well, and that Drew isn’t in a lot of pain after words. Also pray that the tumors have the ALK mutation so we can give the targeted therapy a try. This will truly be the last chance we are willing to take for medicine to save Drew.
Thinking about tomorrow is filling me with a lot of emotions—and some I didn’t expect. I think the biggest is a feeling of relief. Which I know sounds weird, but it’s true. It’s a milestone—an end to harsh treatments. And even though I’m fully aware of our position, that is a relief. We are done with our part. We’ve done all we can, exhausted our resources, and now we are putting it in God’s hands. On November first when we got the shocking news that the cancer was back, I pictured the only time we’d be done with treatment was going to be when Drew was gone. How wonderful is it that we can be done with treatment for a while, and still have Drew with us! And he still feels so good! I get the opportunity to do things with him I wasn’t sure I would get to do ever again. Take him swimming, go on a trip, even take him to a Community Ed class since we have no hospital stays on our calendar. We get to have a “normal” life again, with our Drew in it. What a gift. For how long? Only God knows, but I’m not going to complain. Or at least I’ll try not to.
This year has been so hard. We have been through so much, and we are tired. In every way we can be—physically, emotionally, mentally. I had a weird feeling of relief when Drew got diagnosed as well. And I think the only people that understood it then were the ones that knew how bad it had gotten at home leading up to that day. So likewise, the only way to understand the relief of our situation now is to realize what we’ve been through. We aren’t giving up by not pursing any other treatment for Drew, we are giving it to God. How freeing that is! We can rest in Him, and enjoy the gift that each day is together with Drew. I know it sounds crazy to be relieved, happy, and at peace right now. It doesn’t make sense. And that’s how I know it’s from God—in comprehendible peace. Keep praying that we stay in this wonderful place with Him!
With Christmas this week, I’ve been thinking a lot about Mary. At Easter time I identified with the pain she must have felt watching Jesus suffer. But at Christmas time now, I’ve thought, I wonder how much Mary knew? Did she know what her son would face? Did she know there would be a time that she would have to say goodbye to her baby boy, watch him take his last breath, and carry on herself? Even if she knew the Glory he would receive after His work on the Cross, it still would have been such a burden to know the pain Jesus would face. To know you were going to have to give back your son to the One who gave him to you. I’ve asked around, and read through scripture, and I think we weren’t told how much Mary knew. Either way I think I can learn a lot from her, since there are undeniable similarities in our stories. What does she do, what does the bible say? “Treasured all these things, pondered them in her heart”. This is said several times in Luke. This is what I’m trying to do, treasure every day we have. Every giggle, every time he obviously teases his sister (and the fighting that ensues). Mary doesn’t seem to hold back. She doesn’t seem angry. She continues to obey. And she still weeps at the foot of the Cross for her baby boy. She is still an example to follow. To obey, and to enjoy every good thing, and give thanks. Please keep praying I can those things too!
Enjoy your families this Christmas. Give thanks to God for all you have. Listen for His voice in your life, and follow Him. You won’t be let down. No matter what you face, trust me, He will sustain you.
Pictures include Drew's last bath with the line in, our new fish Blue!
~Heidi
No comments:
Post a Comment