Good evening, and I hope all of you are doing amazing in your beautiful lives. I cannot tell you how sorry and embarrassed I am to not have done an update (or any post) for a long time.
We are doing well, and we could even classify it as doing very well, thanks be to God. I’ll do a much longer and detailed update another time, but I didn’t want to put off writing any longer.
I went to Houston last week (2.5 day marathon) which in the end after all was planned turned into a PET scan, MRI, blood work, chest x-ray, consults with Dr. Lang, Dr Li., and Dr. Ravi, and finally, my first treatment of the immunotherapy drug, Keytruda (pembrolizumab).
We are very happy to report that the MRI came back stable with no new lesions!! As for the PET scan, there are no visible lesions and NO new lesions. Praise God! Both reports are attached to this update. It’s been a very, very long journey, and we are here because of your love, prayers, guidance, and God’s unending love and mercy. We are here presenting with not one visible lesion on the scans. I am careful not to call it NED. We can say I am NED on the macroscopic scale. This leads into the fact as to why I am starting immunotherapy.
Praise God that my insurance approved it’s use even though it’s off label (not FDA approved for angiosarcoma). 5 years ago any insurance wouldn’t have thought about it for a second. It costs $21k per dose, and each dose is only 50mL. It would have been denied. However, times have changed. My medical team sent in some very convincing clinical data. Lastly, when I followed up with my insurance contact who approved it, she said she doesn’t want me to go without this medicine. All glory to God. We have a very blessed life! Never ever give up!
As for life itself and long story short, I’ve been busy doing a million things, and we cannot believe school starts for BOTH boys tomorrow! We are beyond excited and proud of Landon and Logan. Two years ago I found myself crying to possibly not even make it to Landon’s first day of preschool. Now, here we are, with Landon starting first grade and Logan is now starting preschool. Life.Is.Good.
We love you all, and thank you from the bottom of our hearts for continuing to pray for us regardless of how often you hear from me. There is strength in numbers and most definitely power in prayer.
We love you.
(click on the below images to enlarge)