Today I have marked on my calendar "D-Day." That term may mean something very different to others, but for us it is "Diagnosis Day." This date is a dividing line in my life. Whenever I look at photos or think about recent events in my life, I think in terms of whether they are BC, before cancer, or AD, after diagnosis. This was one of the life-altering, game-changing moments in my story.
Four years ago today, Barry and I were led into a conference room with a doctor and nurses to be told that our son, Samuel, had leukemia. We were told it was AML (acute myloid leukemia) which was the more aggressive type of the two most common leukemia types. We sat quietly and listened as we were told in very general terms what treatment would look like. Samuel could not be treated locally, but would need to be transferred to Riley Hospital in Indianapolis. He would receive 4-6 inpatient rounds of chemo which would take around 8 months to complete with barely a break to come home. It was overwhelming. The idea of my child having cancer was overwhelming. The logistics of him needing to be away from home for the better part of a year was overwhelming. How could we do that? There were 6 other children at home, one of which was a nursing baby.
They asked if we had any questions and we sat in stunned silence for a moment. Then Barry asked if this hard path was Samuel's only option for treatment which was the question in my mind, as well. The head nurse in the room looked at him like he was crazy and said "Yes, and if you don't do it, charges WILL be brought against you." She could have slapped us in the face and we would have been less shocked. Did she think we wouldn't treat him for leukemia?
What we didn't understand at the time was that there are very definite treatment protocols for many childhood cancers, leukemia in particular. We also didn't understand that despite living in the land of freedom, as a parent, you do not have the freedom to choose your child's treatment, at least when it comes to cancer. Doctors choose the treatment based on known protocals. We get to sign consent forms for harsh chemotherapy whether we agree that it is best for our child or not.
Interesting enough, after transferring to Riley and having a bone marrow aspiration and spinal tap, we learned that Samuel's leukemia treatment would not be so clear cut. After this further testing, we discovered that the leukemia that looked like AML from the blood, was actually an even more rare and aggressive type that was a combination of AML and ALL called biphenotypic acute leukemia. I can remember the doctor that came in to talk to us about this saying the leukemia actually looked about 70% ALL. We instantly felt hopeful because we had been told that ALL was easier to treat and had better odds for survival. The doctor looked downcast. No, it didn't work that way. Biphenotypic leukemia is much harder to treat than even AML. It is trickier and even more aggressive. Because it is so rare (Samuel had higher odds of getting struck by lightning than getting this) there are not tried and true treatment protocols. The doctors were going to have to consult other doctors from all over the country to figure out the best plan. The devastated look on the doctor's face said it all.
Four years ago we entered into a season that, in looking back, I would describe as both brutal and beautiful. Brutal for obvious reasons. It was so very crushing to watch my child suffer and wonder if he would even survive. But it was also beautiful because we saw God step in. He never left us, but walked by our side carrying us through this hard, hard time. Some of my sweetest, most intimate moments with my Lord were sitting in Samuel's hospital room as I poured my heart out to Him. I am not the same woman I was four years ago. Those encounters with Jesus changed me. I wish that I did not need to go through the refiner's fire of cancer and death with Samuel to be changed so. However, I am grateful that God does not waste suffering. God can even redeem the worst of circumstances for good. Thank God for that.
Still trusting in His mighty hand,
Keep In Touch
Send me emails on supporting a friend in tough times through stories, articles, videos and more.