Here Comes the Sun
And I say…it’s alright. We got a big break in Jennings’s favor. His MRD is down to 1% from 3% one week ago.
After last week’s post, I talked to Dr. Bolen early afternoon on Christmas Eve. She, the team in Seattle, the team at St. Jude, and Dr. Huo at Atrium had been talking and emailing late the night before and all the next day. She relayed two encouraging bits of information. One, the “other” / non-St. Jude team was recommending the approach we had already decided on. Dr. Huo actually called us personally later on Christmas Eve to offer that sentiment directly. Given Jennings’s diagnosis, risk factors, and current level of disease the right decision is a haplo-transplant and the best place for that is St. Jude.
The second piece was from her call with Dr. Rubnitz at St. Jude, the leukemia doctor. When she relayed the MRD, he said, “Wow, this is a good response.” He even suggested, and turned out to be right, that it might hold steady or even come down as his counts continue to recover. This was so encouraging to hear, and shocking at the same time. I could even hear the surprise in Dr. Bolen’s voice as she described his response. In a “normal” circumstance, 3% MRD is not good. But, considering that Jennings has relapsed AML with monosomy 7 and MLL….in Dr. Rubnitz’s opinion and experience it was not half bad. With monosomy 7 especially, anything under 5% is good after the first round.
Given this and his low counts at the time of the aspirate, the team decided that the best course of action was to go ahead with the planned line replacement here in Charlotte yesterday and repeat the bone marrow. So that’s what we did. We were definitely hedging our bets and prepared for more bad news. Despite Dr. Rubnitz’s optimism, there was equal concern that his disease may continue to progress, or even explode, as his counts recovered. Afterall, that’s what it did when he initially relapsed.
Surgery was planned for the afternoon, so we went into clinic early to check his labs. If he needed platelets before surgery, they needed time to get them ordered and transfused. I was on pins and needles waiting for the CBC to come back, but when it did it looked fantastic. His white count had not jumped dramatically, and better yet, his platelets were 133 and his hemoglobin was 10.4. Both of those are inching close to the normal range and showed that his counts are in fact solidly on the road to recovery. The best part was that his ANC had jumped to 1250 all the way from 190 last week.
We got the call about 5:30p today with results from the lab in Seattle….1% MRD. His disease is stable and has actually decreased with count recovery. This is really excellent news. For one, it shows his AML is not so nasty that it’s already back off the mat ready to fight. It’s looking more like Marv after the brick throwing scene in Home Alone 2. With the amount of times I’ve seen that movie in the last 10 days, I could recite it here for you, but in a rare moment of restraint I shall move on.
Secondly, it means that we are not in a time critical situation where we need to drop everything and leave for Memphis first thing in the morning. Had it come back trending higher, we likely would have been in that situation. But, given it is stable for the moment and that this whole mess has wedged itself into the holiday season, we will get to hang in Charlotte through New Year's and report to Memphis to get started Monday morning.
The stability and fairly low level of disease also mean that we can start “mild” with the next round of treatment and see what happens. We conferenced with Dr. Rubnitz and Dr. Bolen today to outline the drug options that are out there and hear his recommendation. We are definitely supportive of starting small and going bigger as needed. We both really like Dr. Rubnitz and his reputation as one of the leading pediatric leukemia experts precedes him, but he almost lulled us both into this weird place of comfort & security. The way he outlined options and discussed pros / cons; you could have eavesdropped on the conversation and assumed he was talking about treating the common cold, not AML. I’m not knocking him or his approach at all; he’s just so kind and has an upbeat tone, it’s as if we have nothing to worry about....when in reality you would not be crazy to be running around screaming that the sky is falling. So, we will start small and if that is ineffective, we can go to stronger drugs. We will cross that bridge when we get there, but for now we will bask in the warmth of this sunny news.
It’s been a great few days celebrating Christmas and enjoying time with family. We went from Christmas Eve afternoon until Monday morning without having to have a conversation with one of his doctors. It was all of 3 days, but the way it’s been lately that’s an eternity.
We did our usual holiday things, just slightly pared-down. Lauren’s local family came over for Christmas Eve. We watched a virtual service and then had our traditional Christmas Eve appetizer spread. Half of us, including Lauren’s grandmother Mimi, sat around the “kid room” where we split our time attempting to talk over Home Alone playing in the background and watching 4 little kids rolling around laughing at a movie that is arguably a little old for them and definitely teaching them some useful new phrases. I feel bad for the other parents in Charlotte & Henry’s 2s class at preschool.
Christmas morning was as chaotic as usual with 4 littles tearing through wrapping paper so fast we’re afraid something’s going to catch fire. On more than one occasion, I was afraid to do a sweep of the trash in fear of discovering one Jennings’s IV medicine balls burst all over the floor. His Christmas jammies were pocket-less, so he just drug the thing around like a literal ball & chain…plus I’m convinced it has some sort of attractive power over 3-year-olds with less than stable motor skills and appetites for destruction. But, alas, we survived Christmas morning, no IV balls were harmed, and I think we all made it out of our jammies by 11am.
We went to my parent’s house for the afternoon and Christmas dinner where they got to experience their very own wrapping paper explosion. I hadn’t even taken my jacket off before Charlotte, who is 3 and obviously cannot read, had assembled a pile of presents out from under the tree. Blinking big with her head tilted to one side, “Is thisth mines, daddy?” No Charlotte, no it is not. My parents got Jennings a fairly complex Lego set and got a taste of his preferred method of assembly. He supervises, you assemble, and he better not catch you wandering from the task at hand.
All in all we did a solid job at choosing joy, laughing, playing, and not looking further ahead more than a few minutes. With Monday looming, skepticism over time replacing the encouraging reaction from Dr. Rubnitz , and Christmas over, the weekend was back to our more guarded selves. So it was uplifting to get the news we got today. It is an understatement to say we needed this little victory, albeit small. We get a few more days to rest up, cram in enough sibling bickering and yelling to cover some of the upcoming separation, and sleep in our own beds. Then it’s off to Memphis. The goal remains the same. MRD negative then transplant. We are in the fight.
Days like today give us the boost to live out Hebrews 11:1 - “Now faith is the assurance of things hoped for, the conviction of things not seen.” Our faith is not in Jennings’s healing, but a God who is powerful enough to do it if it is His will. News like this is proof that we are His people…we may be a bruised reed, but He will not break us. We may be a smoldering wick, but He will not quench us.
#allinforjennings
