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.”

 

My Most Used Words

I was scrolling through Facebook recently and came across one of those silly word cloud generators that a friend had done and allowed to be posted on her page. I noticed that my friend’s “most used words” made sense for what I know about her, but were also all positive words. Surely at some point in whatever time period was being scanned she must have posted some negative words and maybe a curse word or two. But there were none in the cute little cloud.

“Click here to discover your most used words on Facebook!” it prompted. Sometimes I get curious and so despite my hesitation about privacy, malware, and spam, I allowed this site to scan my recent posts, pictures, and comments and create a word cloud of my most used words. The words most used would be biggest and probably closest to the center.

words

There it is, front and center using the biggest letters – Shawn. Shawn is the center of everything.

My eyes scanned quickly for Lilly. Surely Lilly would be there. Lilly has to be there. I found Lilly. Not in the smallest letters, but close, and on the outside of the cloud.

Lilly the person (vs. Lilly the word) also feels small and on the outside lately. She feels neglected because she IS neglected. She eats, she has a comfortable bedroom to sleep in, she gets to school on time every day. But she does not get the amount of attention she should get from her family right now while Shawn is big and in the middle. We know this. We acknowledge this. We all resent this.

Other words are also notably small and on the periphery. Running. Food.

CHOP is bigger than cancer.

Bill isn’t on there at all.

Who knows what algorithm is used by this program to pick the words and display them in this arrangement. But I can’t say that it got them wrong.

The toll this all takes on the family is huge.

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?

Happy New Year

On August 31, 2015 we brought Shawn to the doctor to try to find out what was going on with the oddly patterned vomiting. It would be another week until we returned to his pediatrician and were sent to the CHOP Emergency Department when the pediatrician thought she saw papilledema, swelling of the optic disc, during an eye exam. It would be another 7 months until we received his cancer diagnosis and another two months after that until we received the medulloblastoma diagnosis after the results of the genetic testing came back.

With one exception, I have spent every late August since I was five years old preparing to return to school or begin a new academic year at work. The start of a new school year feels more like New Year’s Day to me than January 1st does.

Last Wednesday Shawn asked for dumplings from a Chinese restaurant near Penn’s campus. It was the first of two freshman move-in days at the University of Pennsylvania. I love the energy and excitement of the start of semester so I lingered for a bit. I watched the students. I watched their parents. I listened to the cicadas humming at full force the way they do in late August.

The next day I walked up there again, this time to get Shawn some cookies that he asked for but didn’t eat. Along the way I saw a father that I’d met on the oncology floor. I waved and said hi but he seemed to be in his own world and kept walking without turning his head. Later he told me that he had left the hospital and gone for a walk at his family’s urging but he regretted it. There’s too much life out there, he told me. So many young people starting school and families living their lives. He couldn’t stand to be around it. I can’t stand to be away from it.

Today is August 31, 2016 – the first day of the fall semester at the college where am currently employed. I’m not there. I’m on leave to take care of Shawn.

Happy New Year.

 

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.”

What’s The Third Best Day Of Your Life?

“Mommy, what’s the third best day of your life?”

Shawn asked me this question on Monday while we were waiting to be admitted for his second round of chemotherapy. We’d been to the oncology clinic, then to cardiology for some tests, and then back to the clinic for blood work and an exam, all to be sure that he was at a good point to begin his second round of chemotherapy. He was.

What’s the third best day of my life? Jeez, I don’t know. I couldn’t even tell you the first best or first worst day of my life off the top of my head, let along drill three deep. Where does he come up with these questions? Did he ask for the “third best” because the traditional answers to such questions for parents are the days that our kids are each born and he knows that I have two kids so by default those days would be numbers one and two? Is he old enough and experienced enough to even know about such traditions? Honestly, while seeing and holding both my children for the first time certainly does rate among the most amazing experiences I’ve ever had, their actual birth days weren’t all that great for me. I almost died on one of them. I deflected with “What’s the third best day of YOUR life?” He couldn’t answer either. He started talking about how he thought three day old babies would answer that question.

If you’ve followed along with us at all, you probably know that Bingo is one of Shawn’s favorite things to do at CHOP. It’s broadcast on the hospital TV channel. Weekdays at 2PM, you know what we’ll be doing, usually in our room, sometimes in the studio.

Since Lilly is not in school or camp this week, she came to visit us. She took the opportunity to be a guest caller at Bingo, as we’ve occasionally seen patients and siblings do. Tuesdays are now Musical Bingo. Shawn watched from his room. Lilly loves acting, public speaking, and cameras. She was so excited at the idea of being on TV, even just the in-house channel at CHOP. She was nervous at first but quickly settled seamlessly into the role. She was at home.

 

Here she is being introduced:

 

And then Shawn won:

 

My phone ran out of storage space right before she said “that’s my brother” with a gigantic smile as the other announcer said that “Shawn from 3 East” was the first winner. But I heard it and saw it and their father was upstairs in Shawn’s room, watching the same smile on his face. My stage-loving daughter was holding the mic as her attention-hating brother was watching his sister, the person he loves most in the world and vice versa, host his favorite thing to do at CHOP.

I thought of Shawn’s question from the day before. What’s the third best day of my life? For a moment, I considered that maybe this day was it.