I apologize for the long wait in between updates. I had been hoping that by waiting, I would be able to provide everyone with a final and comprensive plan of action. But (sigh), I am learning that each doctor appt. raises as many questions as it answers, and that no one is going to pave a clear cut road for us to follow.
I have been looking in to clinical trials since our diagnosis, and a friend sent me information on a trial being done through Harvard University involving a vaccine (I'll spare you the latest research on vaccines--but to summarize, a cancer vaccine helps to fight cancer that is already in the body--theoretically). This interested us because it involved the same treatment course he's now getting, including autologous transplant, which I discussed during my last update. Unfortunately, this would mean that Kev would have to have the transplant done in Boston, as well as make weekly trips following the transplant for the vaccination regimen. Without getting too technical, this may or may not be the best course of action--no one can tell us for certain that this will actually help Kev. And it has a slight possibility of setting him back by not allowing him the normal post transplant maintenance drug for a few months while he's still enrolled in the trial. We are seriously considering this as a possible treatment course, and Kev is meeting with the Harvard docs this coming Tuesday. Please pray for wisdom for Kev, myself, and the family to make a good decision.
We do know that we have to get aggressive with this, and we have to do it fast. If he stays here for treatment (i.e. does not enroll in the clinical trial), he is going to complete another 3 or 4 rounds of chemo prior to transplant, and he may actually have a SECOND transplant a few months following the first. With Kev being so young and otherwise healthy, some research shows that a "tandem" transplant often extends remission even further. But again, we don't know what course to take at this point, and we are planning to continue discussion with our doctors, as well as the Harvard docs.
We went to Chicago Thursday to meet with a MM specialist there. This doc will also review the Harvard trial and give us his opinion. We're hoping to hear back from him next week.
But on to some stuff that we DO know! Kev is doing awesome. He has his strength back--he's picking up the girls, pulling back his bow, and getting underneath his truck again :-) What an amazing answer to prayer. His pain level has diminished quite significantly, and he's having a great response to the chemo, which is a very good prognostic sign. Kev is tough as nails, and he's treating this chemo like it's no more of an inconvenience than the common flu--what a rockstar.
This is very daunting, exhausting, and highly emotional stuff to work through--I have my days where I'm feeling great, but there are other days when the fetal position seems like the only place to be, and the strength provided to move forward can only be attributed to God, my father.
Please continue to pray for us as we navigate this dreadful journey. To borrow from a recent sermon I heard, God doesn't promise that he'll always show us the road to take. What he does promise is that he'll be right there with us, every step of the way (Matt 28:20). But we have to keep moving, we have to keep seeking the direction, praying for God's wisdom and for God's will to be done.
Thanks for everyone's continued prayers, texts, emails, cards, gifts, phone calls, Facebook postings, I could go on an on. You are all AMAZING. What a blessing you all are to my family.
Love,
Kristin
Hi Kristin, we are walking a similar road with Jon's mom right now. I've found it hard to be patient when the treatment plan changes daily and every doctor has a different opinion. I'm a planner and I want to know that plan NOW. I'm so glad that Kevin is enjoying some pain relief and able to resume some normal activities. Here are 2 verses that have brought me peace:
ReplyDelete-She is clothed with dignity and strength and can laugh at the days to come Proverbs 31:25
-Because of God's great love for us we are not consumed, for his compassions never fail. Lamentations 3:22
Thinking of you often,
Sandy
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ReplyDeleteKristin,
ReplyDeletePlease know that I will be praying for your husband as well as you and the girls to get through these trials you are all faced with. I'm sure you have heard from a number of people "let me know what you need" and you are being embraced with so many acts of support. Know that we are all here for you. Continue with your strength and ambitious energy to fight this beast!
Kathy Ryktarsyk