For those of you who don’t see my facebook posts, I thought I’d update you on the happenings of the last 24 hours. (By the way, most of my “up to the minute” posts are on facebook). Yesterday morning Dr. Abyankar (a KU doctor) called Brian to let him know that they got his results back from his ECHO (I thought it was an EKG? I don’t know the difference..). Something came back “low” on his heart test, so they do not want to do the GND chemo we had been planning on starting today, because the “D” drug (doxorubicin) is really strong on the heart. Dr. Bartlett (from St. Louis) had told us that you could easily do GN by itself, and while it wouldn’t be quite as effective, it would still get the job done to some degree. The KU doctors didn’t seem to jump on that idea (do you notice a trend of not collaborating well?).
Dr. Abyankar proceeded to suggest that we do a chemo called RICE, which is just as strong, but doesn’t affect the heart like GND. But their MAIN concern is that we are jumping into a chemo treatment without having a “follow-up” plan in place. Usually most of these chemo drugs we are looking at are used as a “bridge” into a stronger treatment (a transplant) or some sort of maintenance regime. Scientifically, the thought is that no chemo will bring a cure, so whether or not any of these drugs put Brian into a remission, that remission would just be temporary. Again, scientifically speaking. We know God can do anything. So, the idea is that while its great and dandy to knock down or completely eliminate the cancer, we’ve got to have another plan in place to follow that up so that we “Keep it at bay” or keep it maintained to a small amount. They are not comfortable with us doing anything until we have a follow-up plan in place. Which, gets tricky when there are only a handful of options left, none of which are so-called “maintenance” drugs (meaning you can stay on them for long periods of time) and we are not considering a 3rd transplant at this time since every other doctor we’ve spoken to besides KU would NEVER recommend a 3rd transplant because it is so risky. No matter how much KU pushes for a 3rd transplant, we will not do it unless we feel it is our absolute best option. And that would take a lot of convincing, considering the cure rate is only 5-15% and the chance of it killing you is 60-70%. Needless to say, a 3rd transplant is not on our radar at this time.
So, now we’re somewhat at “square one” in terms of getting treatment. We still have our appointment set today at noon, but rather than getting right in and getting chemo going, we will have to duke it out with the doctos and hope that we can all come to an agreement on what chemo to do now, and what to do as a follow-up option.
Dr. Bartlett’s nurse (from St. Louis) also called Brian yesterday to see what decisions we had made, following our appointment with her last week. (Have we mentioned that we are very impressed by Dr. Bartlett and her team?) Brian mentioned all of the things that had come up, and the nurse suggested that if the doctors wouldn’t cooperate, we could probably come over to St. Louis to just do the GN portion of chemo that we had planned to do. So that is a possible option if KU is being difficult. Obviously not a top option, as we wouldn’t prefer traveling over there every other week, but at least it’s an option!
So that is where we are at today.
Last night our church family gathered around us to pray for us at our KCI regional campus before Wednesday night activities began. It was so encouraging, humbling and I feel like it strengthened us to keep going. We were spoken so many words of blessing, encouragement and powerful prayers. One guy reminded us that when Jesus healed a crippled man in the Bible, it was the faith of the men who lowered him down through the roof that healed him. He said that when we feel like we need to “borrow” other people’s faith, that they would be there believing for us. Another guy reminded us that Jesus healed Brian 2,000 years ago when He died for us. That he not only died for our sins, but our iniquities as well. And our campus pastor reminded us that there is only one person who can PROMISE us healing, and that is Jesus himself. It was a very encouraging time. People even wrote us notes and prayers that we can read when times get tough. We haven’t had a chance to read them all, yet, but it is encouraging to know that so many people are praying for us. And for that, we are extremely grateful.
I am ready, now more than ever, to keep kicking cancer in the nuts.
Let’s do this thing.
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UPDATE: The doctor just called Brian to see if we could come in earlier..like before 10 a.m. So that means I’ll be heading out of here soon. I’ll keep you posted.