Great success
Lauren got the call from Dr. Rubnitz just after dinner last night. MRD negative with no detectable disease! What an answer to prayer. Here is J making the announcement himself and thanking you all:
Lauren talked to Jeff for a bit about the results. A little too long for my nerves as I rushed back to the bedroom thinking it was surely bad news when she had been gone for several minutes. She said he was glad to deliver the news and sounded a bit surprised, even saying that he questioned the pathologist asking if it really looked different from the last sample. The pathologist said that it absolutely looked different because he could find no signs of AML. That’s got to be so perplexing, and on some levels frustrating, as a research physician. Here is a kid with barely any MRD given a powerful chemotherapy, one that has worked on his cancer before, and there was virtually no response. Follow that back up with a very mild treatment and the last few cancer cells are eradicated. The complexities are seemingly never ending and that’s what makes their jobs so difficult.
This news is such an encouragement to us. Medically, it may not make a difference. When talking last Monday about delaying transplant, Dr. Talluer said that it is extremely rare for anyone to have disease at the 30-day BMA after transplant (I had asked a “what if” question about what happens if enters transplant with MRD and it is still there at the +30 BMA). Even if you enter with MRD level disease, the transplant process will almost always eradicate it initially. The real test is longer term and keeping it away. But, to our parent psyches, this news makes all the difference. We are able to enter transplant on a hopeful, encouraged, uplifted note.
Before we do that, though, we are taking today to celebrate. Jennings and Caroline below, getting the festivities started with surprise breakfast donuts delivered to the front door by a sweet local friend.
Tomorrow will begin an action packed few days for us. Jennings will be admitted for transplant. He and I will go in the morning for several appointments, the most important of which is signing the consent for transplant. That’s one where you definitely don’t want to read the fine print. It basically outlines everything that can go wrong and then ends it with a real bright spot: even if the procedure is successful there is no guarantee that it will help against your cancer. A real confidence inspiring step in the journey, huh? But given the results we got yesterday, I’ll rubber stamp that bad boy and we’ll move on, confident in his team to navigate him through.
We’ll come back to the house where Lauren will be training our nanny, Emily, who’s first day is also tomorrow. Despite tomorrow being admission day, this is the perfect time for her to start. She will be helping us Monday, Wednesday, Friday on the days when the twins don’t have school. Tuesday and Thursday, the 3 are all in school. Assuming Henry and Charlotte don’t run her off during Day 1, Lauren will finish up the training session and take Jennings up to the BMT unit tomorrow evening.
On Thursday, we’ll begin moving locally to our longer term housing situation. Again, despite this happening right around admission, it is really good timing. The house is on Mud Island and is where we stayed last go-round. It is less than 2 miles from St. Jude and will allow us to be on campus in 5 minutes or less. It also has a nostalgic, home-like feel to us. We have many memories from our time there 3 years ago and it is a sweet providence of God that we are able to stay again.
Here is Henry packing….himself.
Thank you all for continuing to follow, read, pray, and support us in all kinds of ways. We continue to blessed and carried along by the love of others. Through God’s good and perfect plan, we have gotten an extra “bonus” week together as a family. One where the kids got to experience a snow unlike any other they may see (at least where we’ll be living) and one where, through all that fun and togetherness, God was allowing the drugs to do their last little bit of work on his disease. I think I can speak for all 6 of us in that our family buckets feel full again, we are as hopeful as we have been since November 24th, and we are confident in God’s steadfastness to hold us together during these next weeks and months.
Jennings and Caroline even managed to overflow their LEGO Masters buckets during the bonus week. We watched a rerun of Jennings’s favorite episode Saturday night, then they got to have a personal Zoom call with Mark & Boone on Sunday. Those two guys spent 30 minutes answering questions, showing off builds, and talking LEGO. Jennings was stoked.
His first question: “How do you be a wego mastuh?”
“I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord.” Ps 27:13-14
#allinforjennings