“One day this will all just be a box you check on his past medical history form.”

It was said to be encouraging. It was said to bring solace. It was said to plug the cavernous hole in my heart with hope. And in those first hazy days after Callen’s diagnosis, it did just that: reminded me that there could be a “one day”, that there might be an “after” life that was longer than his brief four and a half year “before cancer” life. Plus, being a habitual list-maker, the mental image of one day checking off the cancer box as DONE held a certain (admittedly naïve and completely ludicrous) appeal.

But with very little time and a whole lot of experience, it changed. With every stick, push, pill, tap and drip he endured, the echo of those words haunted me. As I watched Callen and his friends mortgage everything from their hair to their fertility for a chance to put cancer in the past, those words – initially a source of comfort – began to really piss me off. This wasn’t “just” anything, in any sense of the word: it wasn’t fair and it certainly wasn’t simple. And as we witnessed one precious child after another progress, relapse or succumb to the disease or its after effects, it became clear cancer would never be relegated entirely to his past.

And then came the moment I filled out his first health history form. April 16, 2015: Kindergarten pre-registration.

After 13 months and over 100 clinic visits you’d think there might have been occasion to do it before then. But in this day and age of electronic medical records, Callen’s diagnosis had been pushed through from one computer to the next, auto-populated into every medical form and onto every billing sheet associated with his name.

So there I sat. In the gymnasium of the elementary school. Surrounded by moms and kids, educators and volunteers. Children were encouraged to attend as it was an opportunity to meet and greet and assess and ask. Their laughter bounced off the gym walls, almost – but not quite – masking the nervous whispers of their mothers. “Do you think he’s ready?” “Will she overcome her shyness?” “I hope kindergarten is ready for him!!”

I seemed to be the only parent there without her child. Callen was at home with a nurse, fewer than 2 weeks into his parvo diagnosis and still reeling from the consequences. A stack of papers was pushed in front of me and, thankful for a reason to bow my head and a place to focus my now-welling eyes, I began to work methodically through the questions. Name. Nickname. Gender. Date of birth. Address. Language Spoken. Parent contact. Emergency contact. Doctor. Dentist. Done.

Next section.

Past Medical History.

There it was. In previous years my biggest dilemma had been whether to check every box “no”, write “N/A” atop the column and drag a line down to the bottom, or leave the entire section blank. But leaving it blank might give the impression that I had skipped the section, and oversight did not sit well with my Type A self. So I generally ended up drawing a bold line straight down the “no” column.

But those days were gone. I willed my eyes down the list. Allergies. Asthma. ADHD. Behavioral problems. Bladder. Bleeding. Bowel. Cerebral Palsy. Cystic Fibrosis. Dental problems.

Wait. Go back. I must have missed it.

Bowel problems. Cerebral Palsy. It was supposed to be right there between those two.

Surely it had been categorized differently. My eyes darted ahead, wondering what else other than “Cancer” it might have been called. Malignancy? Oncologic problem? Was there some sort of medical, slang or politically correct term I’d yet to hear?

I read on.

Diabetes. Head injury. Hearing loss. Heart problems. Lead poisoning. Muscle problems. Seizures. Sickle Cell. Speech. Spinal. Surgery. Vision. The End.

It wasn’t there. Cancer – which takes more of our children’s lives than all of those other diseases (and then some!) combined - hadn’t made the list. What exactly did that imply? Did they not expect children to have cancer in their past – or present for that matter – and come to school? (I was sitting there, wasn't I - that had to mean something!) I needed that box to be there. I wanted to check it. Or mark it with an X. Or maybe shade it in, dark and angry. I had been promised that once-upon-a-thousand-horrible-things-ago, hadn’t I?

I regrouped. Re-examined the list. Forced myself to think outside of that particular box.

Behavioral Problems. Do I check it? For that one week out of every month when he is maniacal from his steroids? Bleeding problems. Well, yes, sometimes, when his platelets are really low. Or the methotrexate inflames every orifice. Bowel. Huh. Are they ready for him to scream from the bathroom when his bottom is bloodied by medication side effects? Dental problems. Chemo blisters his mouth and sometimes he can’t eat. Do they want to know that? Heart. He has a murmur from anemia, and oh-by–the-way-if-he complains-of- chest-pain-please-call–me-because-he–needs-a-transfusion immediately. Muscle problems. They hurt. From the parvo virus. From the IVIG treatments. From the steroids. Or maybe it means his leukemia is progressing. Or that he's 5 and sometimes rough and tumble. But maybe that his cancer is progressing. So I might want to know if he’s complaining of pain. Spinal. Well, he gets it tapped monthly to examine the fluid for cancer cells and then chemotherapy is injected just in case. (But even I knew that’s not what they meant.) Surgery. Every 4 weeks, actually. Oh, and he has a port-a-cath surgically implanted in his chest, so please let me know if he gets hit with a ball during recess or PE. Which he can’t participate in, by the way, when he comes to school with his port accessed.

In the end, there seemed little choice but to leave my Type A (to say nothing of OCD) tendencies behind, leave the section blank, and move on.

“Describe any other important health-related information about your child (for example; feeding tube, hospitalizations, oxygen support, hearing aid, dental appliance, etc.)”: Slightly fewer than two lines stretched out past the “etc”. And beyond that, a solitary line for “all prescription, over-the-counter, and herbal medications your child takes regularly”.

Using my words judiciously and choosing my font size deliberately, I set about summarizing the "et cetera" of my son. Then, after promising the staff that we’d conference about Callen over the summer, I turned in his paperwork, slipped out the door, found my way to the car, and completely went to pieces.

The box checking would have to wait. But the grace would flow immediately as his new school family made good on their promises to meet. And write. And call. To ask and to learn about Callen - the little boy who longed to look and feel and learn and play like everyone else…who was being simultaneously prepared for an epic childhood rite of passage, and protected from the monumental disappointment that would accompany the discovery that his wouldn’t be just like everyone else’s.

An educator would request Callen as hers so that she could impart not only the wisdom of her teaching, but her deeply personal experiences with childhood cancer. An itinerant nurse would develop a medical treatment plan to optimize his safety, his environment and the understanding of those around him. A clinic nurse would sheepishly acknowledge her likely need to call me “constantly” with questions, concerns or updates – not knowing what music that was to this nervous mama’s ears. A counselor would promise to care about Callen as she had cared for his big sister on the many days Olivia came to school hurting to her core. An administrator would hear the catch in my voice acknowledging that, despite every conference call, memo, email, explanation, calculation, consultation, authorization, immunization verification and special consideration, Callen might not get on the bus that first day because there were factors beyond everyone’s control - and who, along with the county’s transportation director, developed not one but three contingency plans to enable Callen to ride that big yellow school bus on September 8th. Even if it had to be alone. Even if he could do no more than ride around the school’s bus loop to the cheers of his classmates, to be seen and greeted and loved and welcomed as everyone longed to be on a first day, and then returned home.

This was their checklist for our son.

And it was every bit about his future.