Please Pray!

 Please pray for my big brother, David, and his family. This was last week’s update from from my sister, Larisa:

“Relapse 💔

D had a routine appt on Thursday….21 months since transplant….and his blood counts have bottomed out. They are much lower than they were when he was diagnosed in 2022. His oncologist is certain that the cancer is back. There are blast cells in his manually counted CBC, which is not good. They did a bone marrow biopsy yesterday afternoon to confirm the types of mutations. They will likely be turning us over to the Leukemia team to determine next steps. Considering how much more dire it looks this time, I don’t know what the options will be. 

I truly don’t see us choosing transplant again. 

This feels pretty final to both of us. Not to mention that David just hugged or shook hands with 800 people at his dad’s funeral this week while his white count was basically nonexistent. 

But we’re okay. It’s sad, of course, but we do not grieve as those who have no hope. I can’t explain how real & true Heaven is to me. This world is a shadow, and I know that with all my heart. I’ve lived so close to death for such a long time that it feels more natural than living on in these broken bodies. Heaven is not the second best option. It just isn’t. 

My Bible passage on Thursday was Acts 13. Paul is preaching a sermon about who Jesus was and what His resurrection means. That through the promises made to David, we have been declared children too, and resurrection will come to us. There are several verses in that chapter that have been meaningful to us in the past. But the one that jumped out at me was this one: 

“For David, after serving God’s purpose in his own generation, fell asleep, was buried with his fathers, and decayed, but the One God raised up did not decay.”

Just like King David, my David is going to die. If not now, then soon in the scheme of eternity. But because Jesus has been raised again, so will he. And that is worth everything.”

And this is David’s post from 2 days ago: 

David's post: June 19th

June 18th was my father’s funeral. As I stood in the lobby of our church at about two in the afternoon, things were winding down; over the past 24 hours, I’d shaken hands with 800 people who knew and loved my dad. Many were dear friends, but some I met for the first time standing in the greeting line. One man had introduced himself only as “classmate”. As we said goodbye to some precious friends and to my siblings, Larisa and I headed home to decompress and for some much-needed rest. 

The prior six weeks had been crazy: in early May I had gotten sick with what turned out to be two separate viruses. During the following weeks, I visited my PCP, urgent care, and the ER, took two courses of antibiotics, had two chest X-rays to check for pneumonia, and generally stressed out my wife. My ER trip was five hours before Larisa needed to get Sintay to Norwayne Middle School at 4:30 AM for his class trip to DC.

And that’s not all: while I was sick, Yikealo graduated, Larisa coordinated his graduation party, Dad spent a week in hospice and passed away, immediately after which Larisa, Yikealo, my brother, his wife, and two of their sons left on a mission trip to Jamaica. 

By the evening of the June 18th, we were exhausted and spent much of the evening napping….with a firm commitment not to get out of our pajamas the following day.

June 19th has always been a significant day in our family. On 6/19/67, Dad and the men he served with were involved in the largest battle that they experienced in Vietnam. Each year around the anniversary, Dad would disappear into himself, only to slowly emerge a few days later. The PTSD from this, and so many other days in Vietnam, followed him home and influenced so much of his thinking and behavior. As a family, we came to understand these truths and to do our best to love and support Dad through these times.

When we adopted our sons, we gradually became aware of the larger cultural significance of the day: Juneteenth. On this day in 1865 the news that the Civil War had ended - and of the emancipation of all slaves - finally reached the furthest corners of Texas; months after the end of the war. It is a day celebrating the end of a dark era in our nation’s history and pointing to hope of a better future.

On June the 19th, 2024 Larisa and I met our commitment; we didn’t get out of our PJs, started to reduce our sleep deficit, and generally enjoyed being together. Predominantly, we just enjoyed not having any big life situations hanging over our heads: I was feeling better, the DC and Jamaica trips were over, Yikealo’s graduation and party were successfully concluded, and Dad’s time in hospice and his funeral were over. We could relax for the first time in months.

On June 20th I had a normally scheduled follow-up visit with my transplant oncologist. These visits had been happening for nearly two years and the frequency had stretched out from days to weeks to months as my body remained healthy and my cancer remained in remission.

Our 44-hour reprieve ended as my transplant oncologist burst into our room and in his endearingly forthright manner asked: “Did you see your blood counts? Everything’s low. I don’t like it!”  We scheduled more labwork and a bone marrow biopsy for the next day, but as the test results slowly rolled in, and Larisa and I were able to absorb them, one thing became clear: my cancer was almost certainly back.

Friday saw us back on main campus at Cleveland Clinic, and my counts had dropped even further. Even more ominous was that the final results from Thursday showed that 4% of my white cells were large, immature, cells – called Blasts – that shouldn’t be in my bloodstream. Taken collectively, the results painted a comprehensive picture of relapse. When I asked the Nurse Practioner performing my biopsy if we even needed perform the procedure since the evidence of relapse was so clear, she informed us “Oh, the biopsy isn’t only for diagnosis, it’s primarly used to identify treatment options.” We’re beyond “if” I have mutations. The question is what mutations do I have, and are they realistically treatable?

Today, our transplant oncologist called to confirm what we had expected: I have Acute Myeloid Leukemia (AML).

So, the question Larisa and I keep getting asked is: “How are you?” Honestly? Relieved and joyous with an enormous side of emotions. Relieved, because waiting to find out if your cancer is back is a crushingly heavy burden. Each blood draw is preceded by days of anxiety. Every decision is framed in the context of uncertainty. In a very real sense, the relapse is a relief because it marks an end to the uncertainty. Joyous, because on June 6th, I watched my dad take his last breath, and there was nothing but peace and victory, tinged with a dash of envy. 

And the emotions… oh the emotions. I have no regrets. My life has been vibrant and full. While we’ve not discussed treatment options yet, research and past conversations with our transplant team don’t offer much hope of a cure for relapsed MDS patients who develop AML. My immediate future most likely looks like palliative care and Heaven. And I rejoice. I’ve been fighting illness for so long that my soul and body are much older than my 50 years would suggest. I have no sorrow for myself, only unbridled excitement and curiosity about what is to come.

But my dear family....I just spent a week away from Larisa while she was in Jamaica, and it was awful. I weep to think of what she will go through. My sons have already lost their birth families, and I cannot stand the thought of adding to their grief or enforcing their flawed perspective that dads will always leave them, when I know with certainty that their Heavenly Father never will. And Molly… she won’t understand where her spare human has disappeared to....only that he’s gone.

So, that’s how we’re doing: excited, joyful and emotional. Also, committed to getting a good tan, since skin cancer is the least of my worries at this point, and my legs haven’t seen the sun in three years.

But June the 19th has another meaning for my family now. It was already filled with hard remembrances, and now we’ve added “the last day of remission” to its layers. I expect that Juneteenth will still mean some PTSD for my family, even while they remember that my Dad’s is finally healed.