Hello Everyone. I hope all is well with you and your families. We are so thankful for YOU - all of your love and support. We feel so blessed - beyond what we deserve. Thank you so much for your kindness, generosity, and unwavering faith in our behalf.
Angela and I recently returned from Boston. We met with Dr. Morgan and Dr. Do at the Dana-Farber Cancer institute. We had a very good visit - they kept congratulating me on still being alive : )
Why go all the way to Boston? (1) Dr. Do is running a clinical trial that sounded interesting to us. Dr. Slotkin from New York told us about the study and Dr. Chalmers thought it sounded promising. (2) We wanted to create a connection with the Dana-Farber Sarcoma team. They have a larger team of sarcoma doctors that see more cases of DSRCT than they do at Huntsman. They wanted to see me in person before they would give recommendations.
Dr. Morgan did not have any revolutionary treatments for me. He had 5-6 suggestions for existing/approved drug combinations that he thought may be effective based on his experience and my history. He is a very smart doctor and we are very grateful for his recommendations.
Dr. Do explained the clinical trial to us and pointed out they are still figuring out safe dosing. She said to call her back in June and give her an update. If I am doing well with another treatment, I will stick with that. If not, we will see if the trial is still a viable option.
Overall, we felt that the doctors visits were beneficial and that we have some good ideas for treatment moving forward. We were given a research article on DSRCT that was published November 2017. It outlined what treatments have been most effective for the cancer, but was quick to point out the poor prognosis for most patients. The survival rates they give are 3 yr and 5 yr. We were hoping for some survival rates for 30+ years. It was sobering to be reminded of the numbers. Heavenly Father really is watching over me and blessing me in so many ways when it comes to my cancer treatment.
Right now, I am continuing the protocol I started in December (minus the Red Devil drug). We meet with Dr. Chalmers on Monday to discuss the recommendations and make a plan for treatment moving forward.
Angela has taken it upon herself to become a DSRCT expert. She is reading the research and coming up with her own treatments plans to run by the doctors. What would I do without her? She is the best!
We did have some time in Boston to walk around the city and see the sites. Anyone that plans on visiting Boston, try to go when it is warm. There were two days where we thought were were going to freeze solid and become part of the scenery. Boston is a wonderful place to visit if you ever get the chance.
We were able to stay with a wonderful family in Belmont. They were very kind and gracious to us the entire time we were there. We are so grateful to them for letting us stay. We were blessed in many ways this trip.
BIG THANK YOU to everyone who helped with our children while we were gone. We really relied on you to keep them safe while we were away. We have such good family and friends. It amazes us that you keep offering to help and say "yes" when we ask for help. Thanks so always being there for us.
I know that Heavenly Father and Jesus Christ are real. They love us and are blessing us continually. I know that they have a plan for each of us and that we will not end our mortal life until our plan is complete - if we are striving to follow them. We have so much to be thankful for. Let us reach out to all around us and help them feel the peace and joy of the Gospel of Jesus Christ.
Thanks again to all of you for all you do in me and my families behalf!!
-Doug-
