So close
Got the call from Dr. Rubnitz just before lunch…in the checkout line of the grocery store of all places. I asked for a few minutes and called him back from the car.
0.12%
Not 0.00%, but not bad either. Considering his last BMA showed 3.96% (when read by this same lab), coming all the way down to 0.12% is a very good response considering the mild treatment that did it.
The goal before transplant is still MRD negative, so Dr. Rubnitz’s recommendation is to move forward with the high-dose Ara-C (cytarabine) per the clinical trial protocol. We agree with this approach and feel it will definitely take him across the goal line. He is in great shape clinically & physically, the Azacitidine and Venetoclax make the AML more susceptible to Ara-C, and cytarabine has been very effective every time he’s received it. So, although Ara-C is a big & toxic gun, we are all systems go.
The protocol is one dose every 12 hours for a total of 8 doses, so 4 days of drugs. Then we follow a typical AML chemotherapy treatment cycle for 3-4 weeks. Wait for his counts to drop down to zero and then wait for them to slowly recover. Once they are back, there will likely be one more BMA to check MRD before transplant. Most of the pre-transplant “work-up” will be done during the count recovery period so that he is ready to be admitted to start transplant as soon as the MRD results are in.
St. Jude does a lot of this type of therapy outpatient, so we are giving that a try. The plus is that we avoid living in the hospital, the con is the schedule. It’s a 2-3 hour infusion in the Medicine Room every 12 hours. We are just finishing Dose #1 as I post this:
Jammies, check. Despicable Me on the tube, check. Warm blanket, check. Smell-good lovey, check. Ara-C hanging in the biohazard bag slowly dripping the toxic, yet purposeful chemo, check.
What’s a smell-good lovey, you ask? Yes, well, that’s the dirty, old one. The lone survivor from pre-relapse lovey land. The new recruits have been recently washed and smell fresh & clean, which to a 5 year old boy is a terrible smell.
Please pray with us that he tolerates this drug ok. Like I said, he is no stranger to it and we are not strangers to its side effects. The ones that seem to plague Jennings are the rash, the fevers, and the loss of appetite coupled with nausea at some points. If he does spike a fever, we will have to be admitted per policy, spending at least a couple days inpatient. They want to act quickly on a fever and rule out (or confirm worst-case) any potential bacterial, fungal, or viral infections.
The other side effect he has dodged thus far during his relapse treatment is the signature hair style of most pediatric cancer patients…we made our peace with that weeks ago and he looks good rocking the low maintenance look. It is likely inevitable with the high-dose Ara-C.
During Monday’s procedure, I finally got around to some personal reflection on 2020 and goals for 2021. I wish I could say I used the first 10 days of the year in deep thought and just wrote all the good stuff down on the eleventh. But, I got them thought through and down on paper while it’s still January, so I’m calling that a win. As part of that, I picked out a word for 2021. My word is HOPE.
Before November 24, 2020 it was not something that was front of mind in my day-to-day life. That tells you just how caught of guard we were with this news. Despite the pandemic, living was easy. Following November 24, 2020 hope has become essential yet difficult to have at times. We are not strangers to being faced with the acute reality that a child is facing a deadly disease. The feelings following December 4, 2017 were similar. There are dark moments in this world of dismal numbers & statistics, potential and guaranteed side effects, medication lists, and lifestyle restrictions.
Then, out of the darkness breaks the light. Like the light that blinded the brother-sister pair in the photo above. The light of a hot July day at St. Jude somewhere around Day +70 after transplant #1…after many dark days we made it to this point, getting close to leaving Memphis and slowly returning to life. The anxiety of relapse being replaced with the hope of cure with each passing day. We HOPE to take a picture like that again. To once again kick ourselves, after time has passed, over how little we think about the threat once faced.
I am striving to find hope this year. I want to see it in the small and the big. The small like Jennings’s sense of humor. We got to the empty waiting room tonight and he flicked a piece of obviously synthetic clothing fuzz off the chair. “They must have cats,” he said without cracking a smile. His light gives me hope.
The slightly bigger things like J-man teaching himself to swallow pills like a champ.
Just knocking out his 3 daily chemo pills, no big deal. His strength gives me hope.
Ultimately, though, I want to truly hope in God. The one who is worthy of putting our faith, trust, and hope in. He gives us glimmers of light in this dark world, but promises life everlasting in a new heaven & a new earth. That is an unshakeable promise in a broken world.
“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.” Rom 15:13
#allinforjennings