The relief from Monday's news that Forrest is in remission has been palpable. Bo and I were at the build project when I got the call. And there, amidst the saw dust and drills, siding pieces and plumbing parts we could do nothing but hold each other and just cry. I know there had been a massive outcry for healing, and I fully believe it made all the difference in the world. I have to admit though— in the spirit of brutal authenticity—i really didn't know if remission is where we would find ourselves this week. Both Bo and I had felt God preparing our hearts with increasing intensity all last week and through the weekend. What would our reaction be if remission wasn't the news? Was our faith, our trust, our belief contingent on circumstance? At every turn, it seemed, I was faced with the question, and I literally could not get Abraham and Isaac out of my mind for days on end. What was God asking of me? What would He ask? I think we really had to get to a place: mentally, emotionally, spiritually where we believed God to be the same good God, the same present God, the same powerful God no matter what happened. We felt a peace that passes all understanding, but it was definitely not an assurance we would get the answer we wanted. All that was sure is the knowledge that God is present and leading us somewhere purposeful.
... But... thank God for buts ... we did get the answer we wanted. And for the first time in a long while, I felt like I could take a deep breath. We needed this. Forrest needed this. The plan for ongoing treatment needed this. Truth of the matter is: yes, remission is an intense relief; but it does not mean cured. Maybe for other cancers remission means you can wash your hands and walk away. It is done. But not for T-ALL.
Don't get me wrong, it is a huge benchmark. Forrest's case is no longer such a wild card. He's not so experimental. The best way I can describe it is that now Forrest's leukemia is under control. The American Cancer Society puts it like this: "When Leukemia is diagnosed, there are usually about 100 billion leukemia cells in the body. Killing 99.9% of these cells during the 1-month induction treatment is enough to achieve a remission, but it still leaves about 100 million leukemia cells in the body." Most T-ALL patients attain remission after the first month. It took Forrest 4 months. But, then this super high tech lab in Seattle looked at his bone marrow smear with the millions of cells that are in it and saw "NO evidence of ANY Acute Lymphoblastic Leukemia." That is amazing! Still...decades of scientific medical research emphatically point to what is now empirically understood: Even if that specific sample did not have any leukemia cells, they still exist in his body. And left unchecked; would multiply and take over. Again. That's why remission is awesome; but it is a relative awesome.
This was a big wicket, though, and it comes flooding in like the life-giving antidote of an epi-pen. I wish, "Thank you, God" didn't seem so trite. So we soak it up, encouraged and strengthened more than any other time since diagnosis. Forrest will stay high risk (but will not be moved to Very High Risk 🙌) as we move forward. We'll continue treatment for the next three years to maintain this precious remission status. Next week we head to Grand Rapids for the start of Phase 3. Because Forrest was slow to attain remission, aggressive treatment will still continue. For this next phase that means we'll be inpatient for up to a week every other week for 8 weeks. (Yes, that math sucks). He'll be given a chemotherapy called methotrexate on a drip at such a high dose terms like "excessive systemic toxicities" start getting thrown around. His organs and especially kidneys will be highly taxed, so the team will monitor him closely for the entirety of each session and won't discharge until his body has cleared the chemo to a satisfactory level. Could take 4 days. Could take 7. Then we do it again 3 more times. After that, it is on to Phase 4. They call it Delayed Intensification. I guess the name speaks for itself.
In this new world of cancer jargon, we learned a term early on: EFS-- Event-Free Survival. Five-year EFS is a big bench mark. Ten yrs— even bigger. So when do you get to stop worrying about it coming back? When are you "cured?" I remember our Spokane oncologist shaking his head at the thought that some would say "cured" after 5 years. He believed: "when you die of something else." Great. I remember cringing. But I think our God doesn't really do benchmarks. He doesn't abide by the standard EFS rates. I think God has big plans for Forrest. And so we move forward with the assurance that He is here and He is listening. To you. To us. Please don't stop praying.
P.S. You all get an A in Oncology 101 class today.