How it began...

Low appetite. Distended belly. Occasional achy joints. Frequent fatigue. Fevers for no reason. These were the signals Jacob's body has been sending us the past several months trying to tell us that something is wrong. But none of these factors alone is alarming. Each of them is easily explained away as being somewhat on the "normal" side of childhood sicknesses and growing up. If we had taken him in much earlier the doctors tell us they most likely would not have detected it. They would probably have sent him home with some pain medicine and some advice about getting enough sleep.

But it was there. It has been for months. Lurking beyond detection. Churning within his bone marrow. Attacking his white blood cells. Dividing out of control. Leukemia.

On Wednesday, 28 September 2011, at around 4:30 pm Jacob began to cry uncontrollably because of a sudden pain in his wrists. Sara and I alternated between compassionate and consoling to frustrated and annoyed. Wrist rubs, ice packs, heat packs, ibuprofen, Tylenol. Nothing worked. 11:00 pm came and went. The crying continued. At this point we tried the "remedy" of ignoring him (maybe he'll get tired and stop if we don't acknowledge it). When that didn't work we turned to scolding, "Jacob! We know it hurts! But if you keep crying you're going to wake up your brother and sister and you're going to keep Mommy and Daddy awake! Can't you cry quieter!?!" (Still can't believe I said that one.) We all got very little sleep that night. I still remember steaming in bed as I listened to him around 5:00 am still crying loudly. Knowing he would not get any sympathy from us (which we now regret profoundly) he began to go to his bathroom sink and run his wrists under cold and then hot water about every 10-15 minutes consistently. He would then go back to his bed, cry, and then return to the soothing sink water.

At this point Sara and I were worn out and frustrated, yet something about him trying to help his own pain via sink water caused us both to feel some level of love and compassion. Finally, I invited him into our bed and I rubbed his wrists for a while until it was time for me to get ready for work. Exhausted I got up and got ready. At our morning family prayers I said to all, "None of us got a very good nights sleep last night, did we? That means I need Jacob and Isaac to be extra big helpers for mommy today, okay? She is very tired and we are all cranky." We then prayed. After the prayer Jacob lingered and said to me as tears rolled down his cheeks, "I'm sorry that I made it so that we didn't sleep very good last night." My heart melted. Looking back now, I realize how unreasonable and ridiculous we had been--"Hey, stop crying because of your cancer! Can't you see we're trying to get some sleep! Tough it out, it's just leukemia!" But we didn't know. We didn't know that leukemia was causing tremendous amounts of extra white blood cells to crowd into his joints until it caused such intense and excruciating pressure as to be unbearable. We just didn't know.

"I'm sorry that I made it so that we didn't sleep very good last night." This echoes in my mind and moves me to tears now as I think of how innocent he was through it all and how frustrated I was with him. Oh, that I could have that night over again, knowing what I know now! I promise to be a better dad for him, and for Isaac, and for Elizabeth, forever!

Needless to say Jacob's condition had now manifested itself in full fury. Now it was detectable. Late Thursday morning Sara took him to our pediatrician who, upon looking at Jacob's blood count, told her to pack up and get to Primary Children's Hospital quickly. That afternoon we checked into the emergency room and after a very slow 36 hours, filled with blood tests, morphine, sedation, a bone marrow biopsy, and many tears, we learned that Jacob has Acute Lymphocytic Leukemia (aka A.L.L), protocol B. This means he has cancer in some of his white blood cells.

The good news is that there is a 85-95% recovery rate in children with A.L.L. It is highly curable. The concerning news is that Jacob must travel for 3.5 years through the crucible of chemotherapy to gain this healing cure. The purpose of this blog is to document Jacob's journey to complete healing and recovery. We do not anticipate filling this blog with sterile and clinically detached details of dates and events, rather we hope it will serve as an important piece of documented family history, a repository for our personal reflections and inner-journey as his parents, and a welcome place for those who care about Jacob to leave comments of love and encouragement.