The Ana Diaries: Transitioning to High School

Public high school school is hard, especially for kids with cancer.

Entries of “The Ana Diaries” are pulled from the many essays and blog posts I wrote about my daughter, Ana, during the (nearly) 5 years she lived with cancer from age 11 through 15. I’m resurfacing some of these old essays because they tell the story of Ana’s bravery and provide a glimpse into what it’s like for a child trying to navigate having cancer while growing up. My goal is to publish one entry from these old pieces per month. This first piece is from 2015, the year Ana started high school.

My daughters started ninth grade and sixth grades last week. While my sixth grader had no trouble getting back into the swing of things (she attends a small private school where she’s gone since she was four), it was much, much harder for my 14-year-old, Ana.

Ana is an incoming freshman at a large public school with more than 1,800 kids. She spent the majority of her elementary and middle school years at the small private school I mentioned above. She graduated with a class of 18 eighth graders who she’s known since young childhood and moved into a school with over five hundred ninth graders who have no idea who she is.

They don’t know she nearly died at the age of 11, but a liver transplant saved her life or that the cancer that took her liver has spread throughout her lungs. They don’t know that she’s sick because right now, she doesn’t look sick.

I thought putting a 504 plan in place would be enough to alleviate some stress. Section 504 of The Rehabilitation act of 1973 requires that public schools provide eligible students “reasonable and appropriate” accommodations so they can participate fully in school.

My husband and I met with various school officials (the nurse, guidance counselor, school psychologist, etc.) before the school year began to create this plan. It included things like allowing her more time to get homework and tests completed due to being absent because of her illness. I thought we were all set.

I forgot, frankly, how physically and emotionally punishing high school can be, particularly for incoming freshman. And it seems so much worse now. There are over twenty security guards at my daughter’s new school and two police offers on the grounds at all times.

Students have to wear photo I.D. badges around their necks. If they are even a minute late, they need a note from a parent otherwise the lateness is unexcused. This can only happen a couple of times before they get detention. There are many more rules — this is just what I’ve picked up during the first week.

On her fourth day of school, my daughter needed labs drawn at the local hospital (located, literally, across the street from the school). She hadn’t eaten breakfast because there was no time. She was about two minutes late and had to find the attendance office. She lost the note I gave her so she had an unexcused absence. She went to class starving and with her arm aching from the blood draw (when a kid with cancer gets labs, they take a lot of blood).

She felt like she’d failed her first period teacher because was unable to get the lateness excused. She was so flustered and stressed that she forgot to take her anti-rejection medication in the morning. This has never happened before. Transplant recipients must take their medication at exactly the same time every day or they risk organ rejection. We all panicked, but since she’s so good about her medication, she was fine. At least, physically.

I hated high school. Just like Ana, I was shy, self-critical, approval-seeking and incredibly sensitive. She has all of these qualities, and on top of that, she’s battling nausea, extreme fatigue, and stomach pain from oral chemotherapy medication and anti-rejection medication.

She’s left a sheltered, loving environment where people knew and loved her for a place that makes very little sense to her. The reality of her situation is that she may not live to graduate high school. This is a blunt, painful truth that is woven into the fabric of Ana’s life, a thread of fear that touches every single thing she does.

So when she came home on Friday, exhausted and stressed, and admitted that no part of her day was enjoyable — not even lunch, not even art — it gave me serious pause. I know it’s the first week and I told her this. It may get better. It will definitely get easier as she becomes more familiar with the school grounds and the new rules and as she makes friends. Most of us just had to suck it up. Hating high school is inevitable, right?

For a teen who has cancer, whose future is terribly, tragically uncertain, there is something perverse about watching the clock, waiting for the bell to ring.

She literally does not have time for this kind of stress in her life. I don’t want her to spend her days trying to fit into a system that makes no sense in the context of her life.

It seems to me the system is set up to make it easier for all the adults to maintain order and achieve the goal of delivering an education. I get that, I really do. And yet… and yet… is this environment good for the kids? There seems to be a pervasive attitude of suspicion that the kids operate under, as though screwing up is an eventual certainty. Is this prison or high school?

I question these things because I always have, but it is even more important now than it was when my daughter was younger because the thought of her watching the clock each day (even at lunch time) fills me with desperation. I want her to enjoy at least some part of her day.

The question that keeps circling around and around in my mind is, “does hating high school have to be inevitable?” I want to believe that the answer is “no” but I’m not feeling very hopeful right now.

Postscript: We ended up pulling Ana out of public high school after just one week. She went to a bucolic local private school with a sprawling campus nestled in the mountains of Woodstock, NY. She loved the school. Here is a photo of Ana taken by a teacher during one of her first days there.

Family photo of Ana

This picture captures Ana’s joy and relief. She loved being outside on the school grounds and she rallied each morning to get up early so she could get to school on time. Ana died on March 22, 2017 at the age of 15. Now, I write about grief.

A version of this story was first published on Huffpost on 9/13/2015.