Chapter Seven, Diagnosis Day

At 31 flavors.
"Ma, they have clown cones. Does that mean there are clowns here?"
"No, buddy."
"Oh. Well next time we come I want a clown cone, but with none of that clown stuff on it.”
---Sam and me, September 3, 2012

April 5, 2012

Diagnosis day.

I had already been told that chances were quite high that Sam had cancer. In fact, the oncology team had come by and introduced themselves before Sam even had his craniotomy. I remember Dr. N, the neuro-oncologist, in the PICU hallway saying, "We wanted to meet you, just in case. But honestly, we're hoping you never have to see us again."

We had to see them again.


Someone came by and told me that there would be a meeting with the oncology team in the evening, after clinic hours. We spent the day working on eating, soothing the steroid-driven anger than Sam was struggling with, and working on getting him up and in the wheelchair for a trip to the playroom with physical therapy.

He was unimpressed.

I arranged with my mom, who was still staying with us (either in the hospital or at the Ronald McDonald House) to come hang out with Sam while I went to the meeting.

At a little after 5pm they came to get me and we wandered around the unit until we found a meeting space that wasn't in use. I don't know if they'd ever had a meeting with only one family member before. Someone, I forget who at this point, expressed surprise that no one else was coming. Dr. N was there, as was Dr. D (who was doing his neuro-onc fellowship with Dr. N), and Chris (who was the nurse practitioner we worked with most and our touchstone through the crazy crap that was to come).

Dr. N stood at a dry erase board and explained that the official diagnosis was Medulloblastoma, exactly as Dr. S (the neurosurgeon) had guessed it would be. She explained that the cells in Sam's tumor displayed anaplasia (which means they were less differentiated and put him in a higher risk category). She talked about the study they were doing and the three different treatment arms that were possible if I decided to put him in the study. She explained what the treatment would be if I chose not to allow him to participate in the study. I, of course, elected to put him in the study. I couldn't imagine letting him go through all of that treatment without the possibility of helping improve the treatment other kids will receive in the future. He ended up placed in the arm of the study in which he received the same treatment he would have gotten if he had remained off-study, so clearly that was the path that was meant to be.

She outlined the plan for treatment. We would get to go home for a short while after he was released by neurosurgery. Then we'd come back and start 6 weeks of radiation. 31 total radiation treatments, 20 to his brain and spine, 11 localized at the tumor site. Then home for a couple of weeks. Then 6 rounds of chemotherapy, each lasting about 4 weeks. The way the "road map" of his treatment was outlined, I thought we'd be home every weekend and for a few weeks at a time during the chemo cycles. Now, I laugh at how naive and hopeful it was for me to think that... to think I'd be able to work, to think we'd be able to sleep in our own beds. At the time, though, I had high hopes.

She talked about the side effects of treatment. The many, many side effects. I couldn't take them all in.

I cried some. Asked questions. Listened. Talked about Sam and myself, about our lives and, when asked, about the support network I believed we had (or didn't have, in certain cases).

Turns out I had no idea who our support network was. People I never would have expected to help stepped up in ways I wouldn't have dared wish for and some people who I thought would be our bedrock ended up being unable to participate in our lives for a multitude of reasons. I have nothing but good feelings about this, to be clear. We had incredible support, much more than I expected or hoped for, and the experience helped clarify how much energy I was willing to put into some relationships of long standing. It was, in all ways, an incredible experience and one of the grandest silver linings ever. But I digress....

They spent 3 hours with me. Explaining, listening, being so very kind.

I went back to the room and told my mom.

I wrote this status update on Facebook:

8:28pm
Medulloblastoma. We're in the higher risk category. MRI is completely clear, which is the best possible starting point. Radiation and chemo should take up the next 8 months or so of our lives. Sam and I were sitting in the room together. He said quietly, "I wish it wasn't me that was sick Mama." I said I wished it wasn't him either, that I wish I could be sick for him and promptly burst into tears. Jesus. He handed me his cloth (his nose wiping cloth, which has been kind of a security blankie for him) and said, "I wish it wouldn't be either of us." This kid is so incredible. I am continually humbled by his grace.

My friend Cheryl, herself a cancer survivor, wrote: Jen your son is beautiful, he is smart, and he is a SURVIVOR! Hurdle #1 done, stay focused and soon hurdle #2 will be done. We are all here for both of you anytime

I replied: Cheryl, I can't tell you how much I needed to hear that word. I've been faltering a little today. Trying to keep it together for him and for myself, but the heme/onc conference with definitive diagnosis today really hit me hard. SURVIVOR. My new mantra. Thank you.

That word was a turning point for me, helping me shift from a perspective of fear to one of hope. Oh, I was still scared. So scared. But there was that hope too and every time the fear washed in, I would concentrate on the hope until I could breathe again.

That night I lay awake in my little alcove bed, listening to Sam's sleeping breath and the occasional beat of an incoming helicopter.

Next up-- Chapter Eight, Introducing The Poop Fairy