The Evolving Diagnosis

“What kind of cancer does he have?”

When I get that question, I answer it. At first my answer was “Primary Disseminated Embryonic Tumor.” Later it shifted to “PNET – Primitive Neuroectodermal Tumor.” Often followed by quizzical looks from people with knowledge of childhood cancers. “He has what? What does that mean?”

The rare presentation of Shawn’s disease is what caused it to remain undiagnosed through 13 admissions over 7 months. He does not have a primary tumor. There is no discernible mass that can be seen on an MRI or CT scan or any of the other scans he had over that time. As the doctor explained it to me, when the cells began dividing they immediately spread out throughout his entire central nervous system. Like rebellious teenagers. At some point, tiny nodules formed on some cranial nerves and one on his spinal column and eventually the neurosurgeon decided that the benefit of attempting to biopsy it finally outweighed the risk of doing so. She was able to get enough tissue for the pathologists to get the broad diagnosis and confirm the malignancy but we would never know exactly where the cancer started, where the “primary tumor” was. And that location is what gives the more granular diagnosis. There wasn’t enough tissue, I was told, for the doctors to be able to do genetic testing on the little tumor. It didn’t really matter, she said, because the treatment is the same for the different types of PNETs and the apples-to-apples comparison isn’t the location of the primary tumor but that the cancer was already disseminated. That’s the part that matters most for the prognosis and the aggressiveness of the cancer and the treatment. His cancer cells are “really smart.” They learned early how to travel throughout his central nervous system and evade detection. They might be harder to get rid of. And we won’t ever really know if they are gone. We’ll do the treatments, we’ll monitor his symptoms, we’ll do regular scans for years. That’s the best we will be able to do, at this point in history anyway.

On Thursday Shawn’s doctor called to tell me that they had been able to do genetic testing on the cancer cells after all, and that the results were in. I grabbed my computer, opened Notepad, and began writing as she talked. This is what I wrote:

Chromosomes 4, 7, 17, 11

duplication of chromosomes 7 and 17q


SJBM03 protocol

Groups of 3 or 7 b
High risk and harder to treat.

So now I have more stuff to Google. And so do you, if you’re interested. I’m not going to try to claim that I fully understand it all yet so I’m not going to try to summarize what it means. What I do know is that his doctor told me that it’s very likely that Shawn’s cancer type is Medulloblastoma. That the first cell to “mutate” (although it’s my understanding that “changed variant” is the current preferred term) did so in the medulla of his brain stem. When that happened and why that happened remains a mystery.

What does it buy us? Not much. Something to google. Less quizzical looks from other cancer parents and patients. Perhaps some level of identity or group affiliation. I started this blog as a chronicle of of my experiences as a parent of a child with a serious but undiagnosed illness. Back then I had almost nothing to google and no way of finding other parents in the same situation. There were three directions it could have gone – infectious, immunological, and malignant. Malignancy, cancer, remained furthest down the list for most of that time. Until it wasn’t. And then it still took two more months to kinda sorta finalize an actual diagnosis.

CHOP, like most modern hospitals, has an online portal that patients and parents can use to track appointments, medications, test results, etc. For most of our time there, Shawn’s “Health History” listed Headaches (noted September 2015) and Eczema (noted April 2009, when he was six months old). He’s always been a pretty healthy kid.

The week of the biopsy, “Headaches” disappeared and only eczema remained. I assumed that perhaps it was in the process of being updated but nothing has ever replaced it. At his last appointment, I asked the doctor about this. She showed me the long list of things that have come and gone from his chart that they can see. It must be a glitch, she said, maybe there’s a tech support number you can call. We looked together and couldn’t find one. She assured me that the doctors and nurses and other CHOP staff can see everything. But every time I log in, I see only the seven year old eczema diagnosis. That’s some pretty complicated and expensive eczema.



The Radiation Transformation

Eight weeks ago, when we received Shawn’s diagnosis, we navigated from his room on 3 East at CHOP to Radiation Oncology in the Perelman Center at the Hospital of the University of Pennsylvania so they could map his brain and spine in preparation for the Proton Therapy Radiation. CHOP doesn’t have its own radiation department, they share with HUP. The journey from one building to the other while inpatient is a series of modern hallways above ground followed by elevator rides below ground, through concrete hallways that look more like tunnels under the streets, back up the elevator into the main HUP building, down some more hallways, across the bridge to Perelman, then back underground to the Radiation Oncology department, through the huge room where the mostly older adults are waiting for their own treatment – often with their middle age children along to help, into the little CHOP room where the kids are waiting – often with their middle age parents along to help.

We were both still quite angry at that point, most of all Shawn. The massive inconsistencies of CHOP, the terror of the undiagnosis, and the frustration of the seven month diagnostic process left both me and Shawn distrustful of the entire process.

There are three Types of parents in the little CHOP section of the Radiation Oncology waiting room:

  1. Those who talk to everyone about everything and clearly want to make connections with other families.
  2. Those who will happily talk to others but will also happily read by themselves.
  3. Those who stare at their phones with headphones in their ears listening to nothing just to make sure that no one talks to them.

Seven weeks ago I was Type 3.

Seven weeks ago Shawn was still grunting and kicking his way through any procedure at the hospital and at anyone with a CHOP badge.

Six weeks ago we started Proton Therapy Radiation. The first of a series of treatments that will hopefully kill the cancer cells that have invaded Shawn’s brain and spine.

Five weeks ago Shawn listened to a person in the big waiting room ringing the Ship’s Bell, a ritual in the cancer world after completing a stage of treatment. Everyone in the room clapped and cheered. He asked what they were doing. I didn’t know so I found out and explained it to him. He said he hated the sound of that bell and didn’t want to do it when he finished radiation. I said he didn’t have to. I personally thought it was stupid. What’s the point of that? Back to my silent headphones after Shawn had his daily anesthesia and got wheeled back to poison his head and spine.

Four weeks ago Shawn made a friend. A five year old girl finishing her second round of treatment for rhabdomyosarcoma. I chatted with her mom while Shawn talked to the kid. I don’t remember either of their names but the mom said that they were doing chemo next, through December. We’ll see each other there, we said. Later we heard that girl ring the bell from Shawn’s recovery room. Considering the odds/prognosis of round two of treatment for rhabdomyosarcoma, I am edgily anticipating seeing them back on the 3rd floor at CHOP. And after that conversation I realized that I’d slipped into being a Type 2 parent in Radiation Oncology.

Three weeks ago I met a Type 1 family from Virginia. They are in Philadelphia so their kid could get radiation treatment with the Proton Therapy machine at HUP. They have four kids, the youngest in treatment, the next older two along for the ride, the oldest was at home  with relatives because he needed to be in school. They knew Shawn. They talked about things Shawn had done on previous days. The radiation Child Life Specialist, Melanie, had given Shawn a Chemoduck early in week 1. That week a nurse called it “ChemoChicken.” I corrected her, “it’s a chemoDUCK,” I told her. She laughed and told me that Dr. Joe had mistakenly called it a chicken so it became a thing to call it ChemoChicken. Oh. A joke that I didn’t get because I was at work, keeping my insurance and at least some pay, pretending to be doing useful things there while it was killing me not to be in radiation with Shawn, learning the inside jokes, getting to know the nurses, doctors, and other families, being his mother. I looked forward to my CHOP days and dragged myself out of bed on my non-CHOP days.

Two weeks ago I learned that Shawn had named his stuffed parrot Melanie, Jr. He excitedly explained to me on Monday night at home that Melanie’s favorite color is green and that she had dressed up as a parrot for Halloween. So he named his stuffed parrot after her.

One week ago I asked Melanie if she understood exactly how big of a deal it is to have Shawn name one of his stuffed animals after her. This is the kid who previously hit and kicked and yelled at anyone who dared to ask about his animals, let alone touch them. To name one after a person with a CHOP badge?

Shawn with Happy Jr. and Melanie Jr.


This week we finished radiation. The transformation that Shawn experienced was nothing short of astounding. The kid who eight weeks ago hated everyone and everything cried this morning because he was sad and excited that this phase of his treatment was over. Next up, four months of intensive chemotherapy. We all lingered there a little longer than usual before finally walking out the door. I looked back. Melanie was still waving.

He feels better, physically, now than he did six weeks ago when he was throwing up in his bed and in the car on the way to treatment. He went through six weeks of the most intense radiation therapies a kid can go through. No one expected him to feel as good as he did the entire time. Yesterday Lilly attended a sibling group while I met with the other parents. A mother who’s daughter finished her own radiation in our second week said that she remembered Shawn because he and her daughter both appeared so healthy among all the really sick looking kids in the waiting room. The fact is, it’s an illusion. We don’t know how healthy Shawn is or isn’t, and that family is probably heading across the country for a last and best effort clinical trial to try to save her life.

The real transformation, the true renewal, was in Shawn’s approach. His outlook. His attitude. His outreach. His friendliness. His hope. Shawn was the first one to become less angry. I followed.

This morning the kid who previously said that he hated the sound of the ship’s bell proudly led everyone out to the big waiting room this morning and rang it. Twice.


Postscript – Shawn allowed me to post all these pictures, and I hope the CHOP people are also ok with it. This is the first time I’ve posted pictures on this blog that included any of our faces. That’s not an accident.

It Doesn’t Rain on Broad Street Days

My last post was based on a race that I’ve historically had little interest in. This one is about a race that I care deeply about.

I ran my first Broad Street Run on May 7, 2000. I’d started running regularly again the year before and by February of that year, I found myself running 6-7 miles at a time and loving it more as the distances got longer. Running had become something I did because I enjoyed it. I saw an ad for this 10 mile race down Broad Street and thought, “that looks like fun, I wonder if I could do that.” That might have been the moment that running became a passion, a step up from a hobby.

Sixteen years and 13 Broad Streets later, it has become something that I can trace my life by. I was a 27 year old single woman with no kids the first time I ran it. I’m now 43 with a family. I’ve finished in the top 5% and the bottom 25%. I’ve run it pregnant with both kids. It’s been hot, cold, sunny, cloudy, windy, although it’s never rained. I’ve run it as a capstone to a 90 mile week during peak marathon training, and it’s been one of only a handful of runs I’d done in the previous month. It’s the only race that I will run every year that I am physically capable of running 10 miles. I don’t think that I can adequately describe exactly what this race means to me. When I turn left from Olney Avenue and walk onto Broad Street and look down the wide empty street toward City Hall, I get goosebumps and smile silently every time. Lots of things change in our lives from year to year and decade to decade. But standing at the start of the Broad Street Run on the first Sunday in May is a consistent ritual for me.

Then one year everything changed.

Independence Blue Cross has been the title sponsor of The Broad Street Run since I’ve been a part of it. It’s also my insurance company. The one which has paid almost $2 million so far in pursuit of a diagnosis and now a treatment plan for Shawn’s cancer. In early February, our team at CHOP brought in a social worker to one of our meetings. I’d been growing increasingly uneasy about how we were going to be able to pay our bills now that I was out of vacation days at work with no end in sight. The social worker put me in touch with an organization called Fred’s Footsteps. They provide financial assistance to families in situations like ours, who were previously doing ok but a child’s serious illness causes major gaps in income. They want parents to be able to focus on their child’s care instead of worrying about money. The organization was founded in memory of Fred DiBona, CEO of Independence Blue Cross, who died of cancer in 2005. There’s a picture on the Fred’s Footsteps website of him presenting the awards at Broad Street. When I saw that picture, my connection with Broad Street got stronger. I knew that this year would be even more meaningful to me.

On February 1st, I registered for Broad Street from Shawn’s hospital room. Technically I entered the lottery, but since I’m considered a veteran runner, having run the race ten or more times, I’m guaranteed entry.

On April 28th, I read this article about the Broad Street race director’s own recent battle with cancer, and how his own father’s cancer inspired him to get involved in the race. Jim Marino is well respected in the running community. I was floored by what I read there and the additional connection that I now felt with Broad Street. I wrote to Jim that night. I don’t know him. We’ve never met. I wrote to him to thank him for what he’s done and to tell him about what Broad Street means to me and why, and the reason that it’s more meaningful this year. I didn’t expect to hear back from him, at least not for a week or two. He had the sixth largest race in the U.S. to put on three days later, after all. But I did hear back from him. Within a couple hours. And apparently I’m still making people cry.

Bill and I talked this week about the logistics of race day. We had both been watching the forecast and saw the rain. Surely that will change, we both agreed. It doesn’t rain on Broad Street days. But lots of things are different this year. Maybe this is one of them.

Then there’s the issue of the shirt color. Each year that I’ve run, the race shirt has been either blue, gray, or white. A few years ago I noticed a pattern. Gray shirt years are terrible. I’m usually unprepared and run correspondingly bad (typically when each kid was a baby). White shirt years are in the middle. Never extraordinary, but not usually bad. Blue shirt years can be magical. I’ve set three PRs in blue shirt years, two of them surpassing my expectations. But great races aren’t always defined by the finish time. At the expo while we were walking to get my shirt, I saw glimpses of people’s bags with blue cloth in them. Is that what I think it is? Is this a blue shirt year? How can that be? I have no chance to run well this year. But I trust Broad Street.

I decided to wear one of my blue wrist bands this morning. I still have almost all of them. I chose the one from the admission when we got the cancer diagnosis. It made sense to do so.

Before the start at Broad Street 2016

My actual running this morning wasn’t great. It felt like a white shirt race in a blue shirt year. I never felt that spark that comes when everything clicks in a race. But I didn’t expect to, given that I’ve been running less and doing no specific training. I’ve got other things going on.

Some things were different this year – I had to pick up my race packet on Saturday since I couldn’t take an unpaid half day to go on Friday afternoon like I usually do. I teared up while crossing the finish line. I did that only once before, when I ran my best time at this race three years ago after maxing out my training and realizing that I could do much more than I ever thought I could. Today I teared up knowing that Bill and both kids were at the finish. And Jim Marino was at the start making his usual announcements, just like always. But it also rained today, and it never rains on Broad Street days. And our kids don’t get cancer. Nothing is a given.

It felt like the Broad Street Run itself was supporting me this year.