Mar 17 - Disney, Family Time and The Plan

First off, Disneyland. What a blessing it was for our family to make it down the Southern California. We were fortunate enough to get a couple of days of sunshine between the atmospheric fronts during our time there. For Naomi it was her first time there and for me, being able to experience it with my family was unforgettable. Rides are NOT my thing, but watching them play in the pool under blue skies and palm trees, family time, and the smile on her face were priceless. How we all wished to stay in la-la land forever!

These last couple of weeks have been busy working on getting information out on a stem cell registry campaign. If you haven't already seen, information regarding stem cell registration has been circulating online and in social media circles. The main purpose of this campaign is to simply get the word out. I have been beyond encouraged by the outpouring of people taking the time to share and show their support, whether or not they themselves are eligible. I had hoped that you would share on Facebook, but I am seeing people bring flyers into work and fairs, have your college kids share on campuses, and sharing at your local communities and churches. It's been beyond our expectations and all I can say is thank you. Thank you for being part of all this. 

I realize that it hasn't been clear what the overall plan of treatment is for me, partially because it hasn't been exactly clear to us either, especially timeline wise. However we got some clarification last week. I'm currently at back at OHSU for round two of chemo followed up 21 days of in-home immunotherapy infusion. Yesterday they did the first bone marrow biopsy to determine how much leukemia remains in the system and at the end of this second round, they will do another to determine whether or not I am in complete remission or MRD (minimal residual disease). Medical technology has gotten so sophisticated that it can detect a 1/1,000,000 cancerous cells compared to 1/100,000 just 4 years ago!

If there is still evidence of ALL in the bone marrow, I will then need to start Car-T therapy, yet another amazing recent medical innovation where they extrude t-cells from the patient's blood and add a genetic receptor. They then put the t-cells back in the patient which go to work attacking leukemia cells.  Amazing technology but it also poses some major risks, as there have been very few cases in which this treatment has been used with kidney transplant patients, and in general can take a heavy toll on the kidneys, with the potential of me losing my transplanted kidney in the process.

However if I do achieve MRD, we can skip Car-T and begin the stem cell transplant process as early as the end of April/ first of May. This is why we have put so much effort into the campaign, time is of the essence. If you haven't had the chance, go to saveruth.com to find additional information and share.

Everything I've shared today could not have happened without people stepping up to help. For every prayer and thought, email and text, dog walker, baby-sitter, food deliverer, visitors, card, and last but not least, stem cell registry coordinator and website designer, and so much more, thank you all again. Because of your prayers, we got to go to Disney, because of your efforts, people are volunteering to get on the registry, because of you, even Scout is not forgotten! Thank you. =)

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight. - Proverbs 3:5