Continuing our guest blogging series during September’s Childhood Cancer Awareness Month, Dr. Katie Tyson shares an entry from her journal dated August 6, 2104. She wrote it when her son Callen, 5 years old and diagnosed with High Risk Pre-B Acute Lymphocytic Leukemia, began another phase of his treatment.

    In just a few hours I will head to MCV for my son’s fourth inpatient admission for chemotherapy. The final two weeks of the Interim Maintenance phase are upon us! Having “been there, done that” three other times, it makes no sense that I’m up at 2:00 am to ruminate. In some ways, it’s eager anticipation… like when you’re afraid you’ll oversleep and miss an early morning flight. Except that our destination is a mere 20 minutes by car. And there’s no worry of being “late” to clinic because appointment times are approximate (at best). And there’s no fear that our hospital bed will be given away as getting chemo is one of the best ways to guarantee a room.        
    We pack like we would for any trip – but thank God there are no extra baggage fees! Suitcase 1: clothing and toiletries. Suitcase 2: blender, workout equipment, snacks, really good instant coffee, single serve creamers, world’s best travel coffee mug, and one totally amazing pillow. Suitcase 3: iPad, cell phone, gaming system, chargers, trash novel, and People magazine. Carry-on bag: Callen’s Heroes Backpack from our friends at Connor’s Heroes.  Far more than a bag of boredom busters and practical items, this backpack is a literal and figurative reminder of the backing we have from the families who have gone before us.
    In some ways, this time at MCV is the continuation of a journey begun years ago. MCV is a part of my fabric, my history. It is where I became a doctor, then wife, then mother. In twilight hours, when Callen finally sleeps, I head for the stairwell and climb the 388 well-worn steps as many times as my legs and lungs will allow. As I ascend floors, I reminisce: ERs, ICUs, ORs, L&D (where Callen was born during my year as Chief Resident), pediatrics, women’s surgical, medical-surgical, cardiac, transplant, helipad. Each floor is evocative of past patient encounters: lives ushered in, lives saved, lives transformed (not the least of which, my own) and lives lost. But childhood cancer is foreign territory to me. Yes, it is immensely helpful to know the layout of the hospital, speak the lingo, and recognize the doctors. At the same time it is terrifying to know the layout of the hospital, speak the lingo, and recognize the doctors.
    Jim and I have often spoken of this dichotomy – how knowing what we know is a source of both comfort and consternation. For the most part we navigate Callen’s care incognito, as “Mr. & Mrs.,” “Mom & Dad,” with only the occasional tell suggesting more than a crash course in all things medical. Truth be told, no amount of experience could have adequately prepared us for this side of the patient-physician relationship. For parental, rather than practitioner, roles as caregivers for a critically ill child. For being on the receiving end of life-altering news, rather than the bearers of it.
    Is it really any wonder, then, that I awaken so early today? I’ve been conditioned by years of motherhood and medicine. These have long been my hours to study, prepare, optimize, fortify. Decades of training being put to their best test. And now, to their best use.

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