Journey Into The Whirlwind

“I’ve been reading memoirs written by people who’ve experienced really horrible things in their lives,” I told my Sunday morning running group over coffee a month ago. “Shawn and I are going back to CHOP on June 20th for his first round of chemotherapy,” I told them. “The doctors tell me that this protocol is among the most intensive chemo there is. It’s going to really suck. I need a really gut-wrenching memoir to read while we’re there. The more heartbreaking, the better.”

Most of my running friends are smarter and more well read than I am. It’s part of the reason I like being with them as much as I do. The Sunday group is particularly astute, if not a bit sesquipedalian.

Two weeks later Jim, also a Russian history professor in addition to being one of my running partners, handed me a paper copy of Journey Into The Whirlwind by Eugenia Semyonovna Ginzburg. “This should meet your criteria,” he told me. It’s a firsthand account of a woman who spent eighteen years in prison and hard labor camps during Stalin-era Russia. “Bad things happen to her,” Jim told me, “and then it gets worse. Let me know if you have any questions about the history surrounding the events in this book.” My eyes probably actually widened. This sounds perfect!

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I tucked Jim’s book into the side pocket of my CHOP bag and headed into chemo, whatever that would actually turn out to be. I spent the days leading up to this admission with increasing anxiety and outright fear about what we’d deal with when we got there and then headed into our Whirlwind.

We were admitted on a Monday. The first three days were active infusion of “the most intense chemotherapy there is, short of our bone marrow transplant kids.” Those kids are locked away in a solitary wing that is difficult to get to. I’ve never been there or seen them. Shawn threw up several times on Monday in a mechanical way. He wasn’t nauseous, he simply threw up when he needed to and felt ok in between episodes. I held the puke buckets under him and rotated them as I’ve done hundreds of times before. He had some urgent diarrhea, too, as predicted, and some urinary incontinence. I did a lot of laundry in the first two days. Then it was over. That was it. And Shawn never complained.

I didn’t take out the book until Wednesday. I was at about page 15 when the hospital chaplain stopped by. This is one of those positions at CHOP that make the rounds every so often to see if they might be needed or wanted. I wasn’t in a mood to chat with anyone, having finally opened my book while Shawn was happily watching a movie. But I was polite. She told me that someone had told her that we were new and might need some help from her. New? Hahahaha. This is our 16th admission. Our first for chemo and second on the oncology floor but we are far from new to CHOP. “Well, I don’t know who told you that we are new and might need your help, but we’re not new and we’re atheists, with a small ‘a’, it’s just not a thing for us. Thanks for stopping by, I appreciate your time.” I hoped she’d just leave. I get that chaplains, particularly hospital chaplains, have things to offer even to non-religious families, but it’s just not where I’m at right now. Thanks for stopping by, I appreciate your time.

She didn’t leave. Damn. Ok, time for some small talk. I can do that. I’m not in the mood, but I can do it.

“What are you reading?” She asked.

I held up the book and read the title out loud.

“What is it about?”

“A woman who spent time in a Russian prison in the Stalin era.”

“Are you a professor?”

“No, why do you ask?”

“I don’t see many people around here reading hard copy books, especially about topics like that.”

She eventually left. I really did appreciate her time.

I kept reading when I could. It took me the entire 15 day stay plus a few days at home to finish the 418 page book. That felt very long for a relatively easy admission but it was because it was so smooth that it took so long to read. Shawn was awake and happy for most of the time. He wanted to play. My time was spent mostly interacting with him and when I took some time for myself it was outside, running or walking, while Shawn watched TV or played games on his iPad, Face Timing me if he needed anything, which most of the time he did not. That’s a good thing, given how many admissions prior to the diagnosis I spent rotating the puke bowls and watching him finally collapse into sleep after screaming in pain for so long. I rarely left the room during those stays but I had plenty of time to read.

So what did I get out of Journey Into the Whirlwind?

I wanted to read this book for it’s horrific memoir topic. That’s been my thing lately, after all. This woman endured a lot. It’s both good to know about such things in the world and it’s good to understand that just because there are worse things happening to other people doesn’t make whatever troubles you are going through any easier. It’s also a good reminder that none of us have a corner market on suffering in this world.

As always happened at the beginning of such a ride one or two of us began to make literary comparisons: in this case Alaska and Jack London’s White Fang.

As I read, I noted quotes that felt relevant to our experiences here. This is not a book review, nor is it an academic discussion. These were my thoughts, broken out in quotes, as I read this book while living on the oncology floor of a pediatric hospital, having spent seven months living on other floors of the same hospital while desperately seeking answers.

Perhaps because waiting for an inevitable disaster is worse than the disaster itself, or because physical pain dulls mental anguish. Or perhaps simply because human beings can get used to anything, even to the most appalling evils, so that the successive wounds inflicted on me by the dreadful system of baiting, inquisition, and torture hurt me less than those I suffered when I first came up against it.

We can get used to anything, can’t we? When we first came to this hospital I didn’t leave my room for two days because I was too terrified to try to find my way around while worrying about what Shawn would be doing while I was gone. Most parents on this floor who are here for the first or even second time, are petrified. In addition to having most likely recently been told the horrific words “your child has cancer” they have also been uprooted from their homes, whether 10 miles away or 500 miles away. It’s the most awful feeling at the start. But what about us? Our primary doctor assured me that I am not the first parent to feel tangible relief from hearing a cancer diagnosis, because it’s a diagnosis, and a diagnosis carries with it a treatment plan, which is better than continuing to try to tread water in the abyss. But these others – they are petrified. Last week they were likely sitting in their pediatrician’s office saying “something’s wrong.” And now they’re here. They don’t even know how to get food, let alone want to eat it. The first weeks are tough. But we did that almost a year ago.

They were worse off than I was: I had the advantage of six months experience behind me.

May I never experience all that it is possible to get used to.

For better or worse, yup.

At the once, without allowing myself to dwell on the horrors of our situation, I set about establishing contacts.

That’s the key, isn’t it? Establish contacts. Make connections. Other people. Ginzburg describes the process of deciphering the prison alphabet system of tapping on walls in order to communicate with others. I struggled to make contacts in the first few days of this admission. I wanted to meet other parents. I wanted to talk to their kids, and so did Shawn. But how? Half the kids are restricted to their rooms, with requirements to leave the door closed and have all people entering to wear masks. How can I meet them? The answer became laundry. Yup, laundry. Unlike most floors at CHOP, 3 South has a washer and dryer on the floor (the PICU had one, too, but the system was haphazard at best). This is huge! No schlepping dirty clothes to the Connelly Family Resource Center on 8 Northwest! Our own laundry! During weekdays there’s even a person who coordinates it, does it for you (more on that later) and texts you when your stuff is done. On weekends, though, the parents communicate among ourselves. We write our name and number on a white board and when it’s your turn, the person before you texts you to let you know. Then you text the next person when you’re done. So now I had the names and numbers of Mike and Nia. Whoever they were. I spent that day looking at people, wondering who was Mike and who was Nia. But I knew their names and I had texted with them. I had established contact.

For a moment I felt as if all this were part of a film.

There were many times during the Undiagnosed Period and the Diagnosis that I felt as if I was watching myself experience things. I suppose that’s called disassociation and from what I’ve read, it’s not uncommon for people in such situations.

Although the authorities were careful to shift the warders about from one Corridor to another so that we should not get used to them or establish human relationships, the same ones came back to us from time to time and we learned to distinguish between them.

Ah yes. The nurses change, at most, every 12 hours, sometimes more often. Sometimes you talk to the nurse at 7PM and he/she tells you that they’ll be with you until 7AM but you wake up at midnight to find an unknown person in your room, drawing blood from your child. It’s different from prison in that the GOAL here is familiarity and continuity of care. But sometimes it doesn’t work out that way. It’s their jobs. It’s our lives.

With the curiosity of “ex-solitaires” we talked incessantly to the camp women, many of whom had been here for more than a month. One after another we learned their life stories-all of them fantastically improbable and yet true; all tragic, yet consisting of episodes which were comic in their incongruity.


You mustn’t grieve so much for your friend. People die here so often, you can’t afford to. Think of something else, your family for instance. Have you got anyone outside?


One had to bear constantly in mind that however bad things were today, tomorrow they were apt to be worse. Each night, as one went to sleep, one could thank Fortune that one was still alive. “No luck today my lady death.”

People die here. Actually, as we headed to Floor 3, Oncology, I consoled myself with the knowledge that, unlike the PICU, it’s unlikely that anyone will actively die near us. We most likely won’t have to be caught off guard hearing death in the next room over again. We won’t have to explain it to Shawn, again, on Floor 3. At least that part of our experience is likely to be over for the time being. And if I weren’t living all of this, I’d hardly believe it.

One day Derhovskaya ran out of cigarettes. Used to chain-smoking, she was in torment. Just then I got a parcel from my mother in which she had put the usual two packs. “Saved!” I said carefully, holding them out.  Derhovskaya blushed and with a muttered “Thank you” turned away:
     “Just a second. I won’t be long.”
     She sat down by the wall and tapped a message. One of the prisoners in the next cell was Mukhina, the secretary of the Soviet Revolutionaries’ clandestine regional committee. Derkovsaya tapped away, not realizing that I could follow:
     “There’s a woman Communist here who has offered me cigarettes. Should I accept?”
     Mukhina inquired whether the Communist belonged to the opposition. Derkovskaya asked me, passed on my reply–and Mukhina tapped categorically: “No.”
     The cigarettes lay on the table between us. During the night I heard Derkovskaya sighing deeply. Though thin as a rail, she would much sooner have done without bread. As I lay awake on my plank bed, the most unorthodox thoughts passed through my mind — about how thin the line is between high principles and blinkered intolerance, and also how relative are all human systems and ideologies and how absolute the tortures which human beings inflict on one another.

During the time when Shawn was undiagnosed, we went through hell. We’re still going through hell, but now we have a lot more support. Sometimes I call cancer the Golden Ticket Diagnosis, which sounds crazy to most people and especially to people who’ve kids have also received a cancer diagnosis. What I mean by this is that for months, we didn’t know which direction this was going. There were three possibilities for the root of the problem – Infectious, Immunological, or Malignant. Malignant was the furthest down the list for most of that time. Which one we would land on would determine a lot about what happened next.

When we moved into oncology, I was instantly struck by the inequality of resources compared with other departments we had spent time in. There was SO MUCH STUFF. There was lunch and dinner put out several times a week. There were continually replenished snacks for parents. There were not only laundry facilities on the floor, but there were people there who will do your laundry. Shawn likes animals. Pillowcases with animals on them appeared on his pillows. Stuffed animals, the big ones, were delivered to our room. One day I was sitting on my bed in our room and someone came in and handed me a $50 Amazon gift card with “Shawn – 14” written on the envelope. Our room number – 14. They were handing them out to each family on the floor. Our social worker told us that we would not have to worry about our rent or bills during the duration of his treatment.

I’m grateful for all of the support that our family, friends, coworkers, classmates, and community has given us. I’m also grateful for the support that CHOP and various foundations have given us. That goes without saying, although I’ll say it anyway. And from reading about other people’s experiences, we are more fortunate than most families facing the reality of having a child with a life threatening illness, including cancer, which is indeed an exclusive club to which no one wants membership.

Hemophagocytic Lymphohistiocytosis (HLH) is a rare and life threatening immunological disorder that carries a poor prognosis (that means that kids die) and is treated in part with steroids and chemotherapy. For a while during our undiagnosed period, it was toward the top of the list of things that the doctors were considering for Shawn. It’s a terrifying condition that also stuns families and sends them into a tailspin. And you’ve probably never heard of it until now. One of the horrors that I contemplate is that if we’d landed on HLH instead of cancer when the Wheel of Possible Diseases was still spinning, our lives would probably be very different right now. The same exclusive club, but without the special membership card. During our last admission, I met a mother who’s child was on the oncology floor for treatment for HLH. She wasn’t in any less need of support than the parents of kids with cancer. I once asked one of Shawn’s doctors, who has worked in other departments, “If we had landed on HLH rather than cancer, would all this STUFF be happening?” “Probably not” was the answer.

We need the help, that’s for sure. But so do a lot of people. How do I reconcile my needs with the unfairness of the situation? Friends have told me, “take advantage of everything that’s being offered to you.” They are, of course, correct. How can I not? What good would come of not doing so? “It’s all from our donors,” CHOP staff have told me, “most this is given by people with a connection to childhood cancer.” That makes sense, too. Of course people will want to give back and they will do so with conditions that they have a personal connection with or one that pulls at their heartstrings. When I’m in a position to give back, it will be to help families in all forms of previously inconceivable situations, not just those dealing with childhood cancer. I’ve seen them. I’ve watched their kids die. I’ve heard their financial struggles. I’ve watched them have to leave their kids there during the day and go to work because they have no choice. And no one is doing their laundry.

During our first round of chemo, I contemplated several things I could do to combat what I saw as an embarrassment of riches when I compared our experiences in oncology with our experiences elsewhere in the same hospital. I could take some of the leftover food from the many lunches, dinners, and snacks and give it to the homeless people I see daily on my runs from the hospital. I could take my gift card and hand it to a parent in another department that I meet on the elevator. I could borrow some of the multiple copies of popular movies that are available in oncology but that we’ve never been able to find elsewhere and “accidentally” leave them in the playrooms on other floors. My own personal Robin Hood campaign.

In the end, I did none of those things, at least not that time. I grumbled to myself and to anyone else who would listen. Grumbling doesn’t really do any good but perhaps someone listened. Someone told me that a doctor had recently become aware of all this inequity and was similarly shocked and was told “you should talk to Shawn’s mom.” That made me feel better. For a moment. People know. They’re listening to me.

The only thing that I did was refuse to take part. I did my own laundry, even if that meant waiting until the weekend or going to another building. I didn’t eat any of the meals or snacks. In the end, that probably saved me from gaining more weight since none of the meals were particularly healthy, although there was some amazing looking fresh-cut fruit one day. I didn’t eat it.

No one is going to decide to give lunch to kids with other illnesses because I refuse to eat what’s being offered to me. I can probably effect change in a more productive way by becoming involved at a higher level. Maybe when we’re done with whatever it is that we’re doing here, I will. I hope I do. When I donate, my money will be earmarked “for the greatest need.” That won’t be oncology. In the meantime, like Derhovskaya and the cigarettes, sometimes you just have to dig your heels in and stick with your beliefs, even at your own expense, for the sake of feeling like you have some level of control over what’s happening to you.

Your child might get cancer. It’s a terrible version of hell. But your child might also have a Thousand Other Horrifying Things happen to them. There’s no corner market on suffering in the world.

Deliberate Happiness

If you scroll through my past posts, you can find anger and frustration. Lots of it from Shawn and from me. As recently as last Monday, I raised my voice here. Loudly. We were in the ER. At that time, and now looking back, I believe my anger was justified. Other times, in retrospect, my anger was not justified. Shawn’s anger was always justified. He has been dealt a bad hand and it took some really good people a really long time to figure out what to do with that. If anyone has a right to be angry, it’s Shawn.

During radiation, Shawn transitioned out of anger and into something else. Happiness? Hope? Relief?

We arrived at CHOP on Monday morning to begin Shawn’s chemotherapy. He would begin in the clinic and move to the inpatient floor as space and time allowed. Our primary doctor in neuro-oncology was out of town at a conference so we’d planned to see an attending that we have worked with most in the past. But she was unavailable so we saw a different attending. She was amazed by the change in Shawn. We have worked with her, too, but not since Shawn turned happy. And also not since Shawn turned healthy. I mean, other than the cancer. Which is still there. Waiting. Silently. This doctor used that term. Silent tumor. It’s there but not there. It’s there but we can’t see it and we never have, not as a primary tumor. Shawn would call that a Ghost Tumor if we asked him for a name.

That morning the oncology clinic was overtaken by a foundation called Michael’s Way. I can’t tell you much about this group other than that, like many organizations, they appeared in our lives at the exact right moment when we didn’t even know we were looking for them. We checked in at 8:55AM, a few minutes before our scheduled arrival time. People were wheeling in carts of pizza and soft pretzels and cookies and bottles of water and juice. Professional photographers were scoping out their space. Shawn looked on excitedly as a Giant Connect Four game was being set up. “Can we play that?” he asked. “We’ll see” was the only response I could provide. Promise nothing and hope for the best has become my only answer in pretty much every situation here.

My goal for myself for this admission was to not be angry. Actually, my goal was to not show anger. Time after time I’ve begged myself to not be angry. To not overreact. To go with the flow. I’ve failed every time, including last Monday in the Emergency Department. When I reacted with anger at a situation that a supervising nurse practitioner ultimately apologized for and wrote up some sort of report and told me that they are working to try to resolve the problems that caused this particular incident, I watched Shawn as he sadly asked me to stop arguing. The look on his face reminded me that, again, my reaction was justified but that I was right at what cost? What did it fix? What did it harm?

I decided that I would fake happiness. Not in an artificial way, although it would probably be somewhat plastic. I can’t usually control how I feel. Most people can’t. At CHOP I certainly can’t control most of what happens to us. And not feeling angry is probably going to take some more time. But I decided that I can control how I act and react.

The first two days went smoothly. Way more smoothly than my nightmares had anticipated in the weeks leading up to this. I was in a groove of faking happiness and it wasn’t even all that hard. The oncology floor is unexpectedly calm and quiet. Those haggard looking parents and grandparents I’d previously observed in the elevators getting off on Floor 3 now just seemed to be people doing things in a very matter-of-fact way with their mostly happy looking kids. Parents getting off on Floor 3 (with me) now seem less haggard than when we lived on other floors. Less stressed. Less angry.

The Oncology floor is, so far, pretty quiet. Boredom has been our biggest complaint. He is experiencing some side effects of the chemo (vomiting and diarrhea) but so far it’s been less than he’s had in previous admissions when he was so sick and they couldn’t figure out why. Back when we were treading water. Shawn has been relatively unimpressed with chemotherapy so far. “The external shunt on the PICU was WAY worse!” he tells me. We played bingo. We played games with volunteers. The same people he used to grunt at and shoo away are now fun.

This morning, day three, I finally had a chance to employ my Don’t-Show-Anger plan. If I were a teacher at this, I’d give myself a C-. Passing, but barely. Shawn got angry shortly after his breakfast arrived. I don’t know why and neither does he. A bacon and ham omelette ultimately ended up on the floor and walls like so many meds and food before. I raised my voice. I yelled at Shawn. The nurses came in. They closed the door. They told me it was ok. The doctor later told me that it might be a reaction from the steroids they’re giving him to help with the potential reactions to the chemo. I was embarrassed. We’ve been here before, without the drugs. I’m still so unclear about discipline issues at the hospital. How to react. What to do. How it’s different than at home. How to parent here in this artificial parenting environment. If there’s no manual for how to be a parent in the outside world, there’s certainly no guidelines for what to do here.

I’m hesitant to write this, because this is the kind of thing that when everything goes to shit in a few hours I’ll regret and want to come back and retract, but so far this has been one of our easiest admissions. Little drama and even less trauma. My current internal question for myself is – has this admission been easier because I decided to be less angry or am I less angry because this admission has been easier?

Happy And The Last Day Of School

The kids finish school this week. The last day for the district is Friday. We had only one or two snow days this year so they will finish as scheduled, unlike the last few years. Lilly’s last day is Friday. Shawn will finish on Thursday since he’ll be in surgery at CHOP on Friday. He missed the last day of school and the first day of school. In between those those days was an unusual first grade experience.

Lilly is “graduating” from fifth grade. No more elementary school for her. As of Saturday, she will be a Middle Schooler (god help us all!) although the kids call the time in between grades “summer grade” rather than placing themselves in the next higher grade, like I eagerly did when I was a kid.

Shawn is finishing first grade. Well, sorta. Shawn didn’t attend more of first grade than he did attend. I lost count and can’t easily look it up but I estimate that out of 180 days that the kids were supposed to be AT school,

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Lilly, Shawn, and Miss Johnson

Shawn missed at least 100 of them. Probably more. But in late May, sitting on the floor in our living room with his home-instruction teacher, Miss Johnson, Shawn officially completed the assessments that indicate that he knows what a first grader in our school district is expected to know. I admit, I’d been concerned about this. Shawn had been a smart and interested but average student throughout preschool and kindergarten. He wasn’t “advanced”. This stuff doesn’t come naturally to him. He needs help to learn. He needs school. And he wasn’t there more than he was there. There were weeks that went by that he didn’t even brush his teeth or eat, let alone do anything academic. But here he is, finishing first grade.

In retrospect, Shawn’s earliest obvious symptoms showed up the first week of summer vacation last year. I took a week off from work to hang out with the kids and on Monday we set off to explore caves and coal mines in central Pennsylvania but Shawn got sick in the car while getting gas and breakfast less than a mile from the start. We went back home. The first of a series of “car sicknesses” and “stomach bugs” that would follow him throughout the summer. The vomiting that in mid August would still cause me to say “at least we’re getting the sickness out of the way before school starts in a couple weeks” and eventually take him to his pediatrician by the end of the month because something seemed really wrong by then. By the second week of the school year, we’d begun our CHOP adventures. It would be almost seven more months until we figured out what was actually wrong. Shawn would become very angry during those months. He would respond well to only one category of CHOP people – his teachers.

As the admissions piled up in September and October, I diligently called the school to report each absence and sent in the Discharge Papers and the Return To School notes signed by a doctor. I always asked to pick up Shawn’s homework with the intent of keeping him on target with what his class was learning. Maybe not all the way but as best as we could when he was feeling ok. We practiced spelling words and did math problems and read books from the play room on 9 South when he was feeling ok.

One day while I was out running at CHOP in October, I got a phone call from his school. His homeroom teacher, Mrs. Klein, and principal, Mrs. Gregitis, were calling to discuss a more long term plan, the kind that they create for kids who are out for extended periods of time. I slowed to a walk and talked with them. “Don’t worry about the homework,” they said, “it’s intended to reinforce what’s being taught in the classroom and he’s not IN the classroom.” They gave me some things to focus on instead. We initiated the process to start hospital instruction.

Later that month, during Shawn’s longest straight admission, he began working with a hospital teacher, Ryan.IMG_0507 For the first time at CHOP, Shawn was engaged, responsive and happy. He looked forward to each day’s hour with her. She told us how wonderful it was to work with our school district, how responsive they were. When we went back to CHOP inpatient in January, I was disappointed to find out that Maria would be our new teacher, not Ryan, since Shawn liked Ryan so much and he responds best to people he already knows. But he instantly loved Maria, too. He loved all his teachers and I began looking forward to it as the time that Shawn would be happy. When Shawn refused to cooperate with the doctors, I told them that if they want to watch Shawn’s speech, movements, and behavior, come watch him when he’s with his teacher. They’ll see everything they are looking for.

 

 

By March we knew that the root of his problems was cancer. A cancer diagnosis opens a lot of doors for a sick kid that being undiagnosed does not. One of the social workers asked if Shawn might be interested in the Monkey In My Chair program. When we explained to Shawn that it means that a big stuffed monkey would sit in his seat at school when he wasn’t there, he excitedly said yes! The monkey came in the mail a couple weeks later. Shawn named him Happy.

It was a terrible year filled with numerous hospital stays, a lot of pain and sickness, and, well, eventually a cancer diagnosis. Childhood probably doesn’t get much shittier than all of that. But other than his family, his teachers were the people he loved the most throughout this year. Even when he pretty much hated everyone else.

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Shawn with Mrs. Klein and Happy on his last day

 

 

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

medulloblastoma
embryonal
cerebellum

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.

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?

MelanieJr
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.

The Boston Marathon, Radiation Oncology – Same Same

On Wednesday, September 16, 2015 I quietly registered for The Boston Marathon from my room on 9 South at CHOP. I didn’t tell very many people. I told Bill. I told a couple friends. That was about it. No Facebook screenshots of my confirmation email. Not even the usual excitement of registration day for a goal race. I’ve never cared much about The Boston Marathon. But this year I decided to check it out for myself. The race was 7 months away at that point. This stuff with Shawn will surely be fixed and back to normal by then. It never crossed my mind otherwise.

Over the next couple months, I decided that I couldn’t run with people and post in online running forums without being open to talking about my goal race. My style is to talk obsessively about my own goals. So by November I began mentioning it if anyone asked. It wasn’t a secret. It was my goal race, and I was getting really excited about it. I studied the course profile and weather history. I read race reports. I asked questions of people who’d run it before. Plenty of people are willing and able to give me input and advice about running The Boston Marathon and I was grateful for their help.

The Boston Marathon means a lot of things to a lot of people. For some, they love to be a part of such a historic race, the oldest marathon in the world.  For others, it’s symbolic of their personal running and racing achievements. It’s a prestigious and lucrative event to win if you make a living at running. It’s a party, a chance to reconnect with friends and hang out with other runners. Some people just want to get the jacket.

It’s none of those things to me. But once it became my goal race, I began to care about it. A lot.

As the months passed from September to October to November, Shawn’s illness showed no signs of easing up. I ran out of vacation days at work and was now on unpaid FMLA leave when I was with him at CHOP or outpatient appointments or on days when he was too sick to go to school and no one else could stay home with him. I clung to my running and my training because it’s what I love and also to hang onto at least one thing that was a major part of my life before this all started. I wasn’t running nearly as much as I did when I was obsessed with it to a level that made little sense for a competitive but mediocre runner, but it was still my thing and a big part of my identity.

In December the doctors and I made plans for Shawn to go to Boston Children’s Hospital for a second opinion (I love that phrase considering that we’d seen dozens of doctors by that point). The trip was scheduled for mid February. Among my planning and research about the department and the hospital and what we might learn there about Shawn’s sickness, I was excited to go to Boston. I haven’t been there since I was a kid. I could see the city, maybe even check out part of the race course. The trip was canceled a few weeks before the scheduled appointment. The “large atypical cells” had shown up in his cranial spinal fluid in January and we began moving toward oncology and away from immunology as the likely root cause. Although we still had no diagnosis, we no longer had a justifiable reason to see a neurologist who specializes in immunological disorders in a city over 300 miles away. We’d postpone that trip and revisit it if things changed back toward that direction again.

Throughout February, I kept training for my spring goal marathon, although far less than optimally. I let go of the idea that I could maybe run faster than my personal best time. But that course is not a fast one anyway. And weather in New England in the spring is very unpredictable. But weather is always a gamble and utterly unpredictable.

By March I had let go of the race all together. I could not justify taking an unpaid day off from work to go do my hobby and since this race is on a Monday, driving back immediately after the race would not even help me. Plus I couldn’t be in another state when Shawn’s illness was so unpredictable. We never knew from one day to the next how he would be feeling and if we’d need to go to the ER or get admitted. His illness was utterly unpredictable.

April 18, 2016. Race day. Mobility Impaired runners start at 8:50AM. Elite women at 9:32AM. Wave One and Elite Men at 10:00AM. Wave Three (my wave) at 10:50AM.

And a 9:30AM appointment in Radiation Oncology.

I felt sadness this morning but not the same sadness I usually feel when I have to miss a goal race. It wasn’t running or racing that I missed this morning. And it wasn’t the deep oppressive sorrow that I’ve felt at times along the way to Shawn’s diagnosis and beginning of treatment. The loss I felt today was for the life I had before this happened that is now irretrievably gone.

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The Proton Therapy Cyclotron at HUP