Late Bus

Shortly after Zachary died I began to have irrational fears of Lilly dying in some freakish way. During the seven months at CHOP before Shawn’s eventual cancer diagnosis, I spent a lot of time searching for human horror stories. They aren’t hard to find. I read stories of kids drowning in washing machines and school bus accidents. I was drawn to the chaos and disorientation in the descriptions of the experiences. I wanted to know about the small things that can lead to big chaos like a child wanting to please his mother by remembering to put his dirty socks in the laundry and ending up dead because of it. I wanted to learn about his mother’s description of the actions and events and emotions that immediately followed reaching into the washing machine and finding his arm.

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Photo Credit – Amelia Chaplin-Loebell

Friday’s nor’easter kicked up quickly in our area in an unpredictable and disorienting way. Schools were open. Then schools were closed but the kids couldn’t get out. The buses couldn’t get the kids home and parents couldn’t get to the schools to pick them up. I’ve seen storms like this before but only a few times.  As far as I know, everyone eventually got home. Tired and hungry and needing to pee, but alive and able to sleep and eat and use the toilet when they got there. We all suffered but we all made it out.

I dragged my feet leaving work after it had been announced that the college was closing early due to the storm. I stared out the window at the snow and ate the cottage cheese and blueberries that I had brought for lunch while most of my coworkers were packing up and wishing each other a safe drive home.  I looked at my phone’s weather app and wondered why the snow on my phone was falling slowly downward while outside the window it was falling forcefully sideways. I called Bill and told him what I knew about what was happening. I tried to call the school to tell them that I want to pick Shawn up on the way home but the lines were down.

I stared out the window some more.

I thought about Lilly who was about to get on the bus.

I thought about the dead kid in the washing machine.

I walked to my car and the wind blew me sideways.

My eyeglasses were covered with ice.

I wanted to be home.

I wanted my kids to be home.

I sat in my car for a couple minutes and screamed and cried and banged my hands on the steering wheel like I’ve done in the CHOP parking garage so many times.

I brushed the sideways snow off my windshield and headed for home.

I changed routes several times for an hour and forty five minutes.

I got home.

I stared out the window at the now upward snow.

I waited.

I thought about the dead kid in the washing machine.

I looked out the window.

The storm door opened and then the front door. Lilly came in, soaked and snow covered.

I breathed and said “I’m happy you’re home.”

 

“To Include More Life In Our Home”

“Why do you want to adopt a pet?”

This was a question halfway down the adoption application form at a local animal shelter, somewhere in between “Do you have any other pets in your house?” and “Do you have a regular veterinarian?”

The past year has brought a lot of death. Favorite musicians from my childhood and adolescence. My father. Several kids we’ve met along our way.

When your child is very sick with an unexplainable illness that eventually turns out to be brain cancer, you spend a lot of time thinking about the worst. You don’t even have to try to imagine the worst because the worst surrounds you. And sometimes death isn’t even the worst.

Once last spring, either just prior to or just after Shawn’s diagnosis, I spent a Saturday afternoon Googling pages that parents had written describing the moment their child died. They aren’t hard to find.

Shawn’s love of animals is no secret. When we decided to make a public Facebook page for him, he was excited to give it an animal theme name. When he finished treatment, we began to think that perhaps he should have a dog, his favorite animal. The rest of us are not really dog people, although we do know how to take care of dogs. A dog is a big responsibility. We suspected that Shawn would be ready, but are we all?

imageWe started with fish. An aquarium for Bill’s birthday in November. The kids and I wanted to give it to him, fully stocked, as a gift but we soon realized that we didn’t know nearly enough about aquariums to make it a surprise. Bill did, though, so we told him the plan and we all went together to get the supplies and the fish. Picking out your own birthday gift isn’t such a bad thing when it means that you are encouraged to get exactly what you want, even if it isn’t necessarily the most practical decision. He chose two Angel Fish and a Plecostomus, to keep the tank balanced. The kids named them Zebrah (pronounced like Deborah), Goldie, and Cheetah. Everything was great for a couple of days. Then they began to slow down, float more than swim, and soon enough Zebrah and Goldie were dead, too. We went to an aquarium hobbyist store, figuring that our mistake might have been getting the fish from a mass market pet store. We talked to an expert there. Our aquarium was good, he said, we were doing all the right things. We brought home Grape and Warrior. They looked even better than the previous fish, graceful and strong. They, too, were dead within two weeks.

The plan had been fish, then a cat, then a dog. In that order and after each got established in our home. A clear and clean progression. But the fish were dying. Despite all our efforts and doing everything right, the fish continued to die. The aquarium plants were doing great, but the fish kept dying. Death wouldn’t let us be.

imageAt my father’s local memorial service a montage of the music that had been in rotation on his car stereo when he died played quietly in the background, including the Peter, Paul, and Mary version of Bob Dylan’s Blowin’ In The Wind.  Shawn picked up on the line “how many deaths will it take till he knows that too many people have died?” and told me that he is going to be one of the last people in the world to have cancer. Later he told me that he wonders what new diseases there will be when he’s twenty years old. Shawn thinks about some pretty big things for an eight year old kid.

What to do about the cat? The fish died. Can we get a cat when the fish died? How stupid of an idea is it to get another cat anyway? Our 12 year old cat, Kitty, that Bill brought with him from Chicago hates other cats. kittyShe finally seemed happy here as the only animal. Our last cat got out and never came back on the day that we moved into this house. Shawn and I weren’t even here. We were inpatient at CHOP. We suspect that he became disoriented and couldn’t find his way back to our new house. The cat before him died from cancer when he was 6 years old. At the time, we were in the middle of getting our house in Philadelphia ready to sell. We didn’t even notice that he was sick until he curled up next to me one night and he was skin and bones. He was dead two weeks later.

We went to the ACCT animal shelter inside our local PetSmart about five times in the last few weeks. Sometimes we visited while getting the fish,  other times just to say hi to the animals. I found an instant affinity with a four year old cat named Waffles. She had recently been in foster care and was renamed Peggy but the shelter rep kept the name Waffles along side Peggy on the card outside her crate. She was usually asleep when we visited. I asked more and more questions about this cat. She had given birth to kittens in August and was brought to the shelter with them soon after. All her kittens had been quickly adopted. Kittens are cute and they usually go fast. Waffles remained behind. A parent’s job is to raise their kids to become independent adults and Waffles seems to have done just fine at this life task. She seemed perfectly content. My desire to get Waffles grew stronger every day.

Bill wanted to give me Waffles as a surprise for my birthday next week. Like the aquarium, this quickly became an logistical impossibility.

Lilly was resistant, worried about what had happened to our last two cats.

Cancer and disorientation had taken them from us. It’s no surprise that she worries about this. Cancer and disorientation have taken over our lives in the last 15 months. Skittle was one of those “special cats.” We spent a lot of money trying to keep Skittle alive. It didn’t work. And what would Kitty do with a new cat around? She had finally grown back all her fur after spending years overgrooming from anxiety. What if the new cat was aggressive after all?

The kids and I had developed a joke about getting Waffles and we ate a fair amount of Eggos in the last couple weeks. Eventually we were all ready to get Waffles. Well, maybe not Kitty. We couldn’t really ask her in any meaninful way.

We adopted Waffles in the dark pouring rain on a Tuesday night. We brought her home and let her out into our house, ignoring all the recommendations to introduce her gradually. Kitty growled at her. The kids played with and petted her. She ate the leftover cat food on the kitchen floor. Bedtime came and we all found our place.

The next morning I read the details of Waffles’ history on the paperwork that the rep had given to me. She was brought to the shelter in North Philly on August 18th, shortly after giving birth with hair loss on her face and neck from an old wound. Shawn also had no hair on August 18th and he and I were elbow deep in shit and vomit, four days into the next round of chemotherapy. Bill and I were surprised to discover her traumatic history, given how affectionate she is just three months later. She and Kitty have already developed an unspoken agreement to share us and the house. In fact, Kitty has also become more affectionate with everyone. Waffles is likely a special cat.

“Why do you want to adopt a pet?”

Without much thought, I wrote “To include more life in our home.”

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Run Every Day

In 2013 I ran 357 out of 365 days. That means that I ran every day except eight of them. I remember most of the days that I didn’t run that year. Three of them for a minor injury. A couple of them due to apathy after a failed race attempt. But most of those days were great. That doesn’t mean that I loved every run. I ran over 4,000 miles that year. Some of them must have been unpleasant.

“Run Every Day” was a mantra that pulled me through last year during Shawn’s longest admission when I was disoriented and overwhelmed. I even made it one week. Seven days in a row.

Run Every Day.

Shawn’s September chemotherapy admission lasted 15 days, just like every other chemo admission. As his physical side effects became progressively more intense during each one, my running diminished each time to the point where I ran only once during his last admission. By then I no longer recognized my running or myself.

Run Every Day.

Right now I run at the back of my group with the recently injured, very pregnant, and surgically treated.

I used to run 10+ miles every day.

Run Every Day With No Minimum Distance.

Shawn was discharged from CHOP for hopefully the last time on September 26th. I decided soon after that I would Run Every Day In October with no minimum distance.

I ran hungover more than once. I ran tired many times. I ran bored a lot. I ran in weather that I would have preferred to not run in. I ran with friends. I ran by myself. Sometimes the only thing that got me out of bed or off the couch was my decision to Run Every Day In October. Most runs ended better than they began. Kinda like most of the 357 days in 2013. By the end of the month running began to feel familiar again in a good way. I ran 129 miles in October, an average of 4 miles per day.

October turned into November. I’m still running.

Well, See Ya

In the final week of what will hopefully be Shawn’s final chemotherapy treatment, a strange thing happened. I began to make connections like crazy. I’d written previously about the isolation I’ve felt at CHOP and my struggles to make connections in the early days of our oncology floor admissions following the isolation I felt during the undiagnosed months at CHOP with no disease affiliation when I felt no hope of making connections and began writing this blog in an effort to find some.

I can’t say that I did a single thing differently during our final scheduled chemo admission than I didn’t do for any of our previous oncology admissions. I was probably less angry. That might be a key difference. But that’s been a gradual process. I was probably only slightly less angry than I was a month ago and only slightly less angry than the month before that. I’m not sure that my anger level accounts for the uptake in connections that I’ve made recently.

Nearing the end of this segment is not the end. Not by a long shot. Don’t ever think that a family nearing the end of a child’s active cancer treatment is anywhere even close to the end. That will only add to their sense of anxiety and isolation.

I’ve made connections with at least a half a dozen families during this stay, at various stages of this process. Some have been at this for years. Some came here last Tuesday crying, “I knew something was really wrong, I just knew it!” in the room next to us on their very first admission. Some were on round two, seven years after round one.

That’s at least five times more connections than I’ve made during the previous admissions.

 

Shawn was also more open. He went to every play group, music and art therapy groups, and casual gatherings he could find. Even when those efforts were physically painful for him, he wanted to be there. It was such a contrast from months ago when he refused to do anything or a year ago when I got annoyed by the offers for him to come to a group. At that time, he was screaming in pain and they couldn’t even explain it let alone fix it, what good was a music therapy group going to do him?

The anger was still there. I again yelled and cried in the hallway. I cried on the bathroom floor. I cried myself to sleep more often than I didn’t.

Lilly has made some friends here this time, too. Other siblings. This stuff is indescribably hard for the siblings. We got to know a family that we met during our last admission. They were discharged on Saturday. We tried to get Lilly down here to say goodbye before they left. The girls had becomeimg_5834 fast friends, first meeting in a “sibology” group, and later having wheelchair races in the hallway. That kid came to our doorway several times on their last day to ask if Lilly was here yet. Finally I found out what time Lilly would be here. I went to their room to tell them. It was being cleaned. The bed was already crisply made for the next kid. All the kid artwork was off the walls. They were gone.

 

 

There’s a transient nature to this life. How dangerous is it to makes friends here?

For the first time in over a year, I have no guaranteed expectation of returning here. There’s a level of anxiety that comes along with that reality. Life here became our New Normal. Now we need to find another one.

And then it was our turn to be gone.

As our final admission came to an end, discharge number twenty, I kept thinking of the end of the last episode of Seinfeld when the four main characters get off the train and Elaine is left standing, waving, and says “Well, see ya.”

“What Did You Do In School Today?”

One year ago, Shawn missed the first day of school (I think.) Three months ago Shawn missed the last day of school. In between Shawn missed over a hundred days of school and countless partial days. Then we spent the summer doing “Camp CHOP” with inpatient chemo starting every four weeks for 15 days at a time. The idea of what we’re doing now was not even on our radar a year ago today. I looked at emails and texts that Bill and I sent to each other on those days and they included words like “I don’t know if he is sick again or is just saying that to get out of brushing his teeth” and “Don’t brush your teeth again, whatever, I don’t care, just eat your fuckin’ breakfast or you will be starving in an hour” and “It will be very difficult for me to get out of work today. We’re slammed already. Hopefully he’s ok until [his dad] gets off work. Hopefully he’s ok period.” We had no idea what was actually going on. Reading those emails was hard.

Parenting is hard.

I eagerly read Facebook today and liked every single First Day of School picture I saw. I honestly liked them. I loved them. All of them. I posted my own. Those pictures are the best. Parents love those pictures. Our kids tolerate them. They are the good views. The hope views. The We’re Moving Forward Each Year views.

I work in Higher Education. I never have off for the kids First Day Of School. I usually go in to work early that day. When I was my kids’ ages and younger, my mother made homemade cookies every First Day Of School. I have never been able to do that until this year. Since I’m still on leave, I could be home baking cookies while they were at school. I baked early so that I’d be able to go get Shawn when the school called me to come get him. No one expected him to make it past lunch. He usually needs a nap after a trip to the grocery store.

They didn’t call.

Shortly after noon, I sent an email to his teacher, principal, guidance counselor, and CHOP hospital teacher. I wanted to get things set up for next week when we go back for two weeks his last round of chemo. But I also wanted to see how things were going. His guidance counselor was the first to write back. She said that she checked on him at lunch and he was happily eating his little pizzas and wanted to go out for recess with his class. His teacher wrote later. He lasted the entire day.

Shawn is not supposed to be doing this well at this point in treatment. He’s in the final rounds of one of the most intense chemotherapy regimens there is. He continues to surprise us daily. We are lucky.

Last night we talked about going back to school. He was very excited. He told me, “this year I’m not going to be as shy because everyone in the school knows who I am because, you know, the cancer and stuff.”

We had tacos for dinner.

Shawn’s been asking for tacos for weeks so I prepped them after baking the cookies. Maybe he’d actually eat them. He’s losing weight and needs to eat. At dinner, I asked him about his day at school. He saw Happy, the Monkey that sits in his chair when he’s not in school. His teacher read the book to the class. He said goodnight to Happy before leaving. He told me that at recess he saw “the grave that doesn’t have a body” of the kid who died at his school four years ago and some other kids were asking him questions. I tried to find out more about this. I think it’s a bench that is a memorial for Nick, the boy from his school who had cancer and died in 2012, but Shawn didn’t have much to say about it. Nick’s mother visited us at CHOP a couple weeks ago. Shawn has been thinking.

At the bus stop this morning, a neighborhood mom told me about a family friend who’s five year old son was diagnosed with brain cancer a month ago. From her description, I suspect it’s the same type of cancer and same treatment protocol that Shawn has. I spent all day thinking about this, while baking cookies and prepping tacos. How do I help them when I don’t even know them? Would this discussion have happened a year ago?

What did you do in school today?

The CHOP Bake Sale Donation

Two years ago Lilly and her friend, Gabrielle, began asking if they could have a bake sale in front of our house. Gabrielle’s mother and I kept saying “yes, someday” each time the question came up. I think we envisioned a lot of work for us, the moms, and there always seemed to be schedule conflicts for one or both families.

Last spring they asked again to hold a bake sale but this time said they wanted to donate the money they earned to CHOP. We picked a date. April 17th.

The kids did almost all the work themselves. They spent the Saturday before the event makingIMG_4495 cookies, cupcakes, muffins, and Rice Krispies treats. I helped them take the finished products out of the oven, and Gabrielle’s mother did the same, but they did the rest. They set prices for each item. They made ingredient cards to be mindful of those with allergies. They made signs and decorated a cash box. The theme would be “Desert Island.” (Get it?) They chose Caribbean music to play. They cleaned our outdoor furniture for its first use of the year after accumulating winter grunge on the back patio and moved it to the front yard.

We spread the word through friends and family. A mom from Shawn’s school asked if she could post about it on the parent Facebook page. I said yes.

After a cold and rainy early spring, April 17th was suddenly sunny and warm. It was this year’s rendition of that first spring day when nature pops and you want to be outside all day. For most of the early afternoon we had a steady stream of customers. Friends, family, classmates, and neighbors came not only to buy goodies but also to offer personal support to our family and to the effort to raise money for CHOP. More than one parent bought a couple of $0.75 cupcakes with a $10 or $20 bill and told the kids to keep the change. Kids brought their allowance money and piggy bank change to donate. My own children did the same.

Bake Sale 1

At the end of the day, they had raised $265 in about three hours. We saw old friends and met new people and neighbors and felt a lot of love and support from our community. After seven isolating months in and out of the hospital, without the association and identity that comes with a diagnosis followed by the struggle to accept our new identity, we felt like we were a part of something that day. The kids felt proud of their effort and its outcome. They had done something good and they knew it.

Like the previous two years of trying to arrange our family schedules for a bake sale, we then spent the next three months working to schedule a time for the kids to donate the money to CHOP. It would have been easy enough for me to deposit the cash into my checking account and then make the donation online. But we wanted the kids to have the chance to donate it in person, to experience this not as an abstract exchange of money on the internet but to hand it to a person and to do so in the hospital.

Finally, this week, we were able to meet with someone from the CHOP Foundation. Shawn’s low blood counts meant that he wasn’t able to leave the floor so we met on the bridge between the inpatient oncology wings. She brought gifts for the kids and asked them if they have a preference for where the money goes. She listed several options — child life, a particular department, medical research, the general fund, etc. As I’ve written previously, I have my own opinions. But this is not my money and this was not my fundraiser. They chose the general fund. Use the money where it is most needed.

During this exchange, I contemplated the $3.6 million that my insurance company has paid CHOP, so far, in the last year. I compared that with the $265 that my children, with the help of their friends, were right now giving to this hospital. I thought about how lucky we are to have as good health insurance as we do. I thought about how proud I am that my kids and their friends recognize that not everyone has what we have and that they want to help.

Last night Shawn had a procedure that was very traumatic to him, both mentally and physically. We once again invaded his body and beat him up a little bit more in this massive effort to try to fix what is wrong. Lilly was here with us. She held his hand and said encouraging things to him. Later she told me that she thought that all of this is unfair. When I started to talk about the necessities of his treatment, she stopped me and said “no, I don’t mean just what’s happening to Shawn, I mean that all these kids need to be here in this hospital at all.”

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.