Callen’s second night at MCV was a particularly difficult one. We were a mere 24 hours into his diagnosis and even fewer hours into his induction chemotherapy. His temperature was still spiking, his pain was still excruciating. He cried out in discomfort, frustration, fear and for reasons unknown. Every hour throughout the night he was awakened, whether by a physical or psychological discomfort, and was nearly inconsolable. We’d do what we could as parents to comfort him – make and remake the soaked bed, mop his brow, apply cold packs to his forehead or warm packs to his aching joints, whisper continuous words of love. When those measures failed, we’d enlist the help of one of his ethereal nurses or a push of morphine. I thought my heart would shatter when at one point late in the night he called out repeatedly, “I’m too little for this! I’m too little for this!” I had to lock myself in the bathroom to scream in anguish, away from his watchful eyes, and curse what I was witnessing.

By daybreak, a shift had occurred. It wasn’t so much a physical change: he was still drenched in sweat, feverish, uncomfortable. But his first words as he stirred were, “I got this, Mom. I got this.”

And so it is with this spirit that we move forward into the consolidation phase of treatment.

Following the disappointing results of last week we were eager to get face time with Callen’s oncologist for Q&A, and a deeper understanding of what it all meant and what it entailed. There was no way to prepare for that visit. None of the original literature we were provided at the time of diagnosis even addressed this scenario: that page of the treatment algorithm simply isn’t included.

We arrived early and first to the clinic. We would eventually be the last to leave, with more than 10 hours of time passing in the interim. To describe the day as rigorous would be an understatement: another lumbar puncture under anesthesia and administration of cyclophosphamide, methotrexate, cytarabine and 6-mercaptopurine. Four different chemotherapies via three different routes. Home health visited us there and delivered his 4-hour post-treatment IV fluids for us to run into the night, as well as everything we’d need to safely administer his daily cytarabine at home over the holiday weekend. Jim and I were schooled in the specifics of this two-month phase. It was a dizzying conversation detailing the protocol schedule, statistics, doses, side effects and warning signs. We went through packets of consent forms, acknowledged risks and benefits, agreed to continue his enrollment in the Children’s Oncology Group study protocols. We learned about each of the six agents he’d receive during the “56-day consolidation phase for high-risk B-ALL patients randomized to Arm A of treatment”.

Callen handled it all with his usual aplomb. Once we had established a mantra for the day outlining his expectations (in this case “button, nap, Band-Aid”, which was short for accessing his port-a-cath to draw blood, being put to sleep for his LP, and waking up with one small Band-Aid on his back) he was focused and in control. His biggest complaint was hunger, which we couldn’t assuage until those initial three steps were completed. That only took about 5 hours. He binged on Scooby Doo (thank you, Netflix!) and a very delayed brunch while the remaining hours of chemotherapy were infused, along with their requisite pre- and post-poison medications.

We left exhausted and hungry - but hopeful.

So like our son, those first hours after last Wednesday night’s news were fraught with arduous physical and emotional reactions. We cried out for what was, what could not be, what had to be, what was ahead, what Callen would have to endure.

But by daybreak we were firm in our focus and resolve.

He’s got this!