We head back to the hospital in Grand Rapids on Monday. It will be a full week of daily chemo treatments. But first, at 8am on Monday: another bone marrow aspirate will kick start the week. It is a big deal. The kind of big deal that makes a desperate mother put out an SOS to pray. We need you. Forrest needs you.
This will be the test that will show us if the onslaught of chemo he has faced over the last 3 months has been effective. The vast majority of T-cell Acute Lymphoblastic Leukemia patients will see no marked leukemia cells after the first month. Forrest still had nearly 2%. He was put in a high risk category and given stronger medication with increased dosing along with some experimental "let's see how this works" stuff thrown in. His case is unique, and no doctor we've talked to has seen his specific chromosomal translocation. They admit: a lot of this is trial and error. His counts have been really low for over two weeks. So low, in fact, they have taken him off almost every medication and chemo in the hopes of letting him recover his levels. (low levels don't transfer to low energy— the crazy irony is he has been feeling great). My mind can't help but wonder if it has been 2 weeks, though, that the leukemia has also had a chance to revive. If Monday's bone marrow test shows anything over .01%, his medical team will want to move him to a "Very High Risk" category. The ramifications are huge. They will batter his already significantly weakened body. They will decimate his already highly compromised immune system and tax every other part of his body that has already been asked to compensate. They will pummel him.
Even as I write this in as clear of language as I can muster the emotions come thundering in threatening paralysis, mind-numbing fear, doubt. All of it. Pediatric Leukemia has some of the highest remission rates seen. I have to keep remembering that. But it comes at a price. We are good at living day by day, but the time frame associated with leukemia is undeniably daunting. Even if Forrest was an "early responder" or had no residual leukemia in his marrow after the first month, his treatment plan would still be over 3 years. Even if he doesn't move up categories to VHR or Very High Risk, he will still be treated for 3+ years. The type of dosing, frequency, intensity, (and ramifications) all change depending on each patients response, but the time frame stays: 3+ years. Three years. I feel a blanketing suffocation, and then I remember the alternative. So ok, we'll do chemo forever if thats what it takes. But God... please.
Early on, leukemia was explained to me as an entire branch of the military going rogue. Except nobody catches on until too late. Your white blood cells are made up of 5 types: all responsible for protecting your body from pathogens, viruses, bacteria, foreign invaders. Except an entire group of Forrest's WBC's mutated, becoming the foreign invaders themselves: undetected. They took over 90% of his bone marrow, spilling out into his liver, spleen and thymus. They set up their base there: creating a harrowing mass that wrapped around his airway and almost suffocated him. But as quickly as they take over, they can be decimated. Just not completely. His mass disappeared in a matter of weeks. His liver and spleen shrunk back within days. In a matter of months 88% of the leukemia in his marrow and blood has been beaten. But now that 2% or 1% or .01% hides. And they wait, not showing themselves as the poisonous chemo is injected over and over and over trying to find every last rogue cell. Three and half years. I guess that is the magic number. If they haven't shown themselves by then, they are gone. How many children had to die for researchers and doctors to understand that. Makes my blood cold.
I don't pretend to understand why Forrest has to fight this battle. I don't know why leukemia or any cancer exists. But I do know that God has not forsaken us. He has shown up in the midst of this battle. I know that He tells us to pray, and I know that prayer has the power to change things. Prayer changes things. Prayer matters. I believe that with every fiber of my being. Forrest has had an army well up from around the world. I'm calling on that army now again. We need you. Forrest needs you. Pray for the eradication of this disease in his tough but tired little body. Pray for strength, yes. But pray for healing. Pray there is nothing. N O T H I N G. that can be found in his marrow on Monday.
I've had this song from Elevation on repeat this week: . . . I've seen you move. Come move the mountains. And I believe, I'll see you do it again. You made a way, when there was no way. And I believe. I'll see you do it again. . . . Your promise still stands. Great is your Faithfulness. I'm still in your hands. This is my confidence. You've never failed me yet.
God come. Move. Move the mountain as only You can.
UPDATE:
The bone marrow results are in and the news is encouraging! Forrest does still have a tiny bit of leukemia in his marrow, but the exact quantity was actually very hard for the lab to ascertain. Regardless of nuances, it is practically a ten-fold reduction from a month ago and signifies the most important thing: Forrest is indeed responding well to the aggressive treatments he's been given. 🙌 Most concerning to us was the re-categorization to Very High Risk if the drs didn't see exactly what they wanted. But Forrest will not be moved to VHR for right now. We will continue on with this phase, giving him 5 more weeks to reach that .01% or less number. The trajectory now makes that seem very possible. 👍🏻 In addition, his next bone marrow aspirate will be sent to the most highly advanced lab in the country able to see and mark Leukemia cells in T-ALL patients like no other place in the world. They also saw good signs in his marrow that his white blood cell levels should start coming up. Just delayed but very indicative of the extremely heavy drugs he got 3 and 4 weeks ago.
So we thank God, and we keep on keeping on. I wish this was a one time prayer request/response event, but it is very much a marathon with a lot of hills and twists and turns. I'm grateful for a really good hour spent with our oncologist and the attention and care she's demonstrated over Forrest's case. She is very hopeful and felt encouraged by his test results, so we take that encouragement to heart. There is no doubt in my mind God's hand is all over Forrest and in every dark corner of this journey... there has been a peace and a calm I can attribute to nothing but His presence...And to Forrest's army interceding all over the world: there are simply no words. ❤️
This Thomas Blackshear portrait shows what I cannot begin to describe. I feel it's accuracy with a certainty that makes me tremble.
