We’ve moved
Well, hello there. Welcome, welcome. Make yourself at home. I’ll offer you the self-guided tour as showing off wiz-bang website features is not my forte.
We’ve got some work to do, but the bones are good. The bones are good because I had nothing to do with them. Our dear friend Laura created this for us and we are thrilled. We will add this to the ever-growing list of how our family is forever indebted to her for her kindness, generosity, and love.
CaringBridge has been good and has served us well for over 3 years…including a one and a half year silence, which was our favorite and, you will probably agree, the period of my best work. Since this journey continues, and Lord willing, it has many months left, we wanted something that was ours. Something that we could put our own spin on. CaringBridge is great for getting updates out to people who want them, but when it comes to customizing or sharing more than just text the options are slim to none.
So hopefully you’ll stick around after the tour and subscribe to get our updates here. Jennings needs all of you following, reading, praying, sharing. Now that I’ve guilted you into a subscription (free minus the pain of reading my writing for which there will be no refund), a few updates & things I’ve been meaning to share…
First, and foremost, the namesake of this site. He’s doing quite well, all things considered. No complains of leg pain since my last post. His bloodwork on Thursday looked great, so all signs point to some potential early side effects from the new drugs combined with some possible tiredness / overuse. The nausea has also stayed mostly at bay. It tends to only plague him at dinner, which is just a couple hours after his infusion of azacitidine. It is mild, making him want to stop eating after only a little bit of food, but breakfast and lunch go much better. This is one of those areas where we know all to well that it could be so much worse, so for now we will be thankful for where he is eating-wise and count our blessings. Pass the Sargento Cobly-Jack cheese sticks, please.
Now to a juicy nugget I shamefully omitted from any previous posts. They say a picture is worth a thousand words. Or in my case…well, we’ll just leave it at that.
Those are my girls, minus smallish bear (Charlotte) who was too busy getting dressed and worrying about her outfit to participate. Caroline had the idea to hold an art sale to benefit kids with cancer. She wrote her idea down, complete with pictures, and pitched it to Lauren who then flawlessly executed it with the help of many great friends. Caroline and her friends helped create 140 pieces of art, which were sold in a single day to raise $6,145 for St. Jude. This was so important to Caroline and one of her ways of processing and participating in what we are going through. Thank you so much to all who created art, all who helped organize & execute, and all who bought.
Small bear finally dressed and ready, but too late to hold big checks….and too young to have figured out how to have slid into C’s limelight
Be The Match is another note I jotted down hastily in the middle of a call with several leukemia and transplant doctors several weeks ago now. I’ve been meaning to post about it, but it’s either slipped my mind or hasn’t made the cut. Dr. Huo with Atrium asked early on for a search to be run Jennings’s HLA type in the national bone marrow donor registry. That would give us any potential matches for an unrelated bone marrow transplant. That is generally not the first choice for a donor, but in relapsed AML it’s good to have all of the options out on the table. St. Jude, being his official transplant team from round one, ran him through the registry. There were just two matches.
For some folks, this registry is it. They have no matched siblings and doing a haploidentical transplant using a parent is not an option (parents not in their life, parents no longer living, parents not in adequate health, etc.). The hope is that a close match is found in the registry. A mismatched unrelated transplant is not what you want to have as your only option - the potential for acute & chronic GVHD, of the deadly kind, is great. So I encourage you all to sign-up to become a donor at bethematch.org. It’s very easy to get registered and unlikely that you’ll ever get called (only about 8% ever do), but you could be someone like Jennings’s one shot at a successful transplant.
A few more stats to encourage you to sign-up…
if you are white (ethnicity is important in HLA matching), you have a 77% chance of finding a match - not bad, unless you happen to be one of those in the 23%
if you are black, you only have a 23% chance of finding a match
if you are Hispanic or Latino, you have a 46% chance
if you are Asian, you have a 41% chance
if you find one match, you are relying on that person to be willing & able to travel and undergo the extraction on very little notice
Well, anymore on this one and you may unsubscribe. Lauren is with Jennings (she made it out yesterday!!) at the Jude for his last infusion of Aza. Tomorrow is another bone marrow aspirate to see what this week of mild treatment has done. This will be his 4th BMA since the end of November. They are making swiss cheese of his upper hip bone. Every time, as the anesthesia wears off, he feels something on his back, reaches around to feel the big padded bandage, and says, “Dang it!” I hear ya, man. I hear ya.
Please pray with us that he his MRD negative tomorrow. It would be so great to avoid additional toxicity and get the transplant show on the road. We should have results by Tuesday at the latest and will update you all once we do.
This is J…walking like an Egyptian, helping choreograph my happy dance for L’s arrival. It is good to be together.
“These things I have spoken to you, that my joy may be in you, and that your joy may be full.” John 15:11