As I said, we are approaching round four. This is both exciting and completely terrifying. We have Joe’s next biopsy scheduled for the 18th of September. This will tell us what is next. We got the results from his genome test. (Just a couple months ago Duke got their 50 panel test online. Previously they had to send lab work to a different center that had only a 7 panel test.) This test is amazing and I am so excited about what it means for the future of cancer treatment. The results told us exactly where the mutation is in Joe’s system. This gave us both good and bad news. The good was that his specific mutations are not resistant to chemo. The bad is that there is no known targeted therapy for his mutation at this time. (Some of you may have read about the CAR T cell therapy that was just approved by the FDA, which is an example of targeted therapy that is being developed.) What this means for us is that we really need this biopsy to show that he is in remission. If it does then we will move forward with a second bone marrow transplant, most likely around the end of October. The conditioning regime will not be nearly as intense as last time and if all goes well he will be allowed to be out patient for the entirety of it. Currently our doctors are looking nationwide for clinical trials in the event that he is not in remission. This is another instance in which I have very mixed feelings. Hopefully it will not be necessary to make a decision regarding this, if so, I trust that our path will be made clear.
Otherwise, there hasn’t been too much of a change other than the huge praise of Joe holding on to platelets a bit better. He is still greatly dependent of both blood and platelet transfusions, currently requiring both a couple times per week. However, that doesn’t tell us much about how well the treatment is working. We spoke to our PA yesterday and she said that they have seen remission without number improvement.
In other news, Joe solidified his spot as best husband in the world. As many of you know, I recently had a birthday. This day has been overshadowed for the past 5 years as Arleigh’s birthday is just 5 days after mine. I have been happy to celebrate her over me, especially this year as I got sick and was not able to be with Joe. I was almost grateful to ignore any celebration, as life has not felt very joyous lately. But my amazing thoughtful husband had other plans. I came back to the apartment several days past my birthday to the second most wonderful surprise I have ever received (first being his proposal). Without me knowing, weeks prior he tracked down and contacted my favorite artist (Mary Grace Wolnski) intending to buy me one of her paintings. After speaking to her a few times and telling her about me and our story he had a piece commissioned for me!!!!! Holy Cow yall, I was UGLY crying. It is the most beautiful thing ever. She listened to my favorite artist Sigur Ros and an amazing song by Bellarive for inspiration. She titled the piece “You Don’t Have To Fear /Your Hand In Mine”. Do yourself a favor and look at her art (MaryGrace Studio) . Here is the piece and the song. I hope you all are as moved as I.