Posted on May 26, 2017
A lot has changed since my last update. Chicago wanted me to come back for a re-check in June before my next doses of medication. I thought and wondered and prayed about it for several weeks before deciding not to go. I’ve gone there FIVE times and I am no closer to getting the treatment. I just don’t feel like a re-check is going to make any difference at all and, quite frankly, I’ve lost confidence in this process. It’s an expensive trip – not just financially, but emotionally and physically, too. I told them I was declining the “offer” of re-testing and would stay with my twice per year schedule, as required by the trial.
In the meantime, I decided it’s time I look at some other options. There is a similar clinical trial taking place in Denver and Seattle, although I had been told meeting the criteria was very difficult. I figured it wouldn’t hurt to apply. So I did! They almost immediately responded that it seems I am eligible. They requested my medical records from alllllll of my doctors, reviewed those, and called and said they’d like to see me for an evaluation. Everything on paper looks like I am a good fit. The best news of all? This trial is in Phase II, which means if I get in, I will get the stem cell transplant (no risk of getting control group again).
They’ve scheduled me an appointment in about three weeks, so we will fly to Colorado and see if I’m eligible. I haven’t quit Chicago’s trial, and I’m struggling with guilt from the idea of giving up. But I need an easier option. I’ve felt like every step of the way with Chicago has been a struggle and a battle and they’ve broken my heart too many times to count. Denver, so far, is feeling much easier and like a much better fit.
I’m not sure where exactly I’m supposed to end up, but right now, I’m hoping for some answered prayers and an easier path. Thank you for all who continue to support me and pray for me. I hope I will have some wonderful news to report after my visit in Denver in a few weeks.