CHOP

Happy And The Last Day Of School

~ Blue Wristband Parent ~ 2 Comments

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

~ Blue Wristband Parent ~ 2 Comments

“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

~ Blue Wristband Parent ~ 3 Comments

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.

 

Melanie and Shawn
Disco in the Proton Therapy Room
Lilly and Shawn
Ringing the Ship’s Bell
Shawn and Melanie
Mommy and Shawn
Caitlin and Shawn
Lunch at Olive Garden
Shawn and Dr. Joe
Beth, Shawn, Melanie and Jenna
Ringing the Gong
Family Picture

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

~ Blue Wristband Parent ~ 1 Comment

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

 

 

 

 

 

The Positives

~ Blue Wristband Parent ~ 2 Comments

Most of what I’ve posted here so far has been pretty intense, and focused on the pain and horrors of this process. There’s more to it than that.

I started writing this last Wednesday. I wrote that first line around 5PM after a neat day in apheresis with Shawn’s father and aunt. We were inpatient and had just gotten back upstairs to our room. Shawn said “today was fun!” with a big smile on his face. We watched new release movies (The Good Dinosaur and The Peanuts Movie) that I’m told were purchased by one of the nurses, out of her own pocket, so the kids who are tied to the machines there all day can watch the good movies.

We’ve had our diagnosis, which is now officially PNET (Primitive Neuroectodermal Tumor) since March 18th. Since that day, when I held it together throughout the afternoon and then sobbed on the bathroom floor of 9 South Room 5 for about two hours after Shawn fell asleep, Shawn’s mood and behavior has improved. He still has negative reactions to CHOP staff but he’s beginning to open up to the process. I think he is as relieved as the rest of us to have a diagnosis and a treatment plan, even if it isn’t a good diagnosis and treatment plan and it has a poor prognosis. Shawn knows all of this. And he seems to be hating the doctors and nurses less and less as we go on. We were at CHOP yesterday for his central port placement and he brought one of his stuffed animals, the polar bear. A doctor asked him the bear’s name. Usually he grunts at anyone who asks him that question, and don’t you dare touch them, it’s even in his chart to not to do so. The kid who has previously hit and screamed and threw equipment around the room with far less provocation than asking the name of a stuffed bear simply answered the question. Poley. That’s the bear’s name. It’s Poley. He hugged the bear.

Today was day one of radiation treatment. His anesthesiologist was a doctor who has been with us since the beginning. Multiple GA procecures since September. He knows Shawn. Shawn recognized him, too. Shawn asked for today’s procedure to be done in a particular way. A way that made little sense to the doctors, nurses, and me and his dad. But he wanted it that way because it was what he knows. The doctor asked him why he wanted it that way. Shawn reverted to the defiant angry kid who throws stuff around the room, hits people, calls them stupid, and shuts down. But in the middle of this, he listened to the doctor’s questions. He answered those questions. He told the doctor why he wanted it the way he did. The doctor left, came back a few minutes later, told Shawn that he appreciated that Shawn had told him why he felt the way he did and that he could accommodate Shawn’s request. Shawn has a say in what happens to him. And he was able to ask for what he wants with words. After he was asleep the doctor and I talked and agreed that this is huge progress.

The nurses then told us that they can help us find a place to eat lunch. Oh, we know our way around here. We may be new to you, but we are not new here.

Back to last Wednesday. Aunt Lori is always a lot of fun and that day was no exception. She’s the “Fun Aunt.” Lori also tends to find people she knows or who know people she knows. She had a business connection with one of the nurses. She shared a birthday with another one of the nurses. It was fun to combine CHOP with Lori. Lori will also be helping us with transporting Shawn for his daily radiation treatments for the next six weeks. Lori is a great resource for this, having undergone her own radiation treatments for her own cancer at the same place very recently. Shawn knows this, too. He knows he’s not alone in this. Others have gone before him and will help him.

After the apheresis was done, we went to audiology for a pre-treatment hearing screening. Hearing loss is a potential side effect of the radiation and they will monitor this regularly. Lori and I went back to Shawn’s room to drop some things off while Shawn’s dad went into the testing with him. The audiologist told us where to wait when we got back. The room was freaky. It was like a carnival fun house. I’m sure it was intended to be fun and frivolous but we were hilariously unnerved. And we laughed hard and loud about it, not realizing that we were right outside the exam room and were laughing so loud that we disrupted the testing. Looking back, it probably wasn’t nearly as funny as we thought it was at the time, but the laughter was good.

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The next day Shawn had his CT Sim to map his brain and spine for the radiation treatments. While he was doing that, asleep, I went to my car to drop off some papers and bags in anticipation of being discharged that afternoon. That’s when I discovered that my car battery was dead. I’d left the dome light on when we parked on Monday and hadn’t been back since. I started to get upset; one more thing, dammit. But I quickly stopped that line of thought. CHOP will fix this for me. I have jumper cables, I just need another car. I’ll go to the security office and ask for help. They were there quickly and efficiently, and of course they had their own cables that plug directly into the front of the security vehicle. Within 20 minutes I was fully charged and back in the waiting room.

I have wonderful friends and family. Shawn goes to school in a fantastic district. We’ve received financial assistance from organizations like Fred’s Footsteps and one of my running friends has added Shawn to a charity 5K that her church sponsors each year (more in a later post about my thoughts about the connection between racing and charity, and being a racer and now a charity recipient, this part is not easy for me.) My coworkers have helped me tremendously, both at the office and with emotional and financial support. Friends of mine from high school have sent him gifts. My running friends have sent gifts and run with me at 4AM or 7PM or whatever time I could make it. More than one friend has snuck wine into the hospital for me and stuck around to drink it with me out of coffee cups in the family lounge. Bill and Lilly come visit whenever they can and keep in touch every day through Facetime. They also take care of everything at home while we are away, despite Bill being sick too. Shawn’s teachers, guidance counselor, and principal have stepped up and ensured that Shawn has access to everything he needs to be successful in school and also offered support for our family. Despite missing over 80 school days (about 2/3 of the year so far), Shawn is on grade level in all subjects. In the past week Shawn has had a breakthrough in his reading ability. He reads almost everything now. He walked around CHOP today reading all the signage. He credits his hospital teacher.

We’ve had an amazing team of doctors and nurses and social workers and housekeepers and cafeteria staff and parking attendants and teachers and security officers who have all heard me yell more than I probably should. I ran into a couple of them today, in the hallway, and we chatted. It was fun. I thanked them.

This post got derailed last Wednesday when the doctors came in to talk to me after writing that first line and I went back to frustrated and angry and no longer interested in talking about the fun and good things. There is more crap in my life right now than anyone should ever have to deal with. Today he started the radiation treatments.IMG_4458 I can’t say that I’m not scared shitless about this process. I can’t even say anything positive about it other than that I hope it works. But today was a good day. I don’t know what tomorrow will be but today turned out ok.

This post won’t be as intense or dramatic as some of my others. I’m not as good at writing happy as I am at writing sad and angry. And I’m not at CHOP right now, and my best writing happens at CHOP. But I was there today. And I’ll be there tomorrow.

There’s a balance between hope and reality. My goal right now is to find it. Until then, we’ll watch some fish, play Wii games, and dream about getting our own aquarium. He came home today happy.IMG_4448

 

Floor 3, Moving Forward

~ Blue Wristband Parent ~ 2 Comments

 

A month or so ago, I posted Floor 7, Going Down with the knowledge that we were in the process of moving to oncology.

On January 12th, a Cranial Spinal Fluid lab result appeared in his chart that read “Rare large atypical cells, suspicious for a possible tumor.” Neuro-oncology was brought back in (they had removed themselves from his case several times previously.) His primary neurologist began the process of transitioning us to oncology. We still had no diagnosis but we knew where we were headed. We spent about 6 weeks in no-man’s land. Not in neurology, not in oncology. We had no home.

We are now fully in oncology and we are spending our first night here tonight. Floor 3. We arrived in Interventional Radiology at 7:30AM. From there we began the transition.

Excitement. We will meet other parents and kids with cancer. We’ll find our home. We’ll make friends. We’ll find resources.

Confusion. Why is the procedure taking hours longer than they said it would take?

Anger. Frustration. Our room faces the lobby, over a construction zone and only three floor up. With no natural light. The DVD player (actually a Play Station) won’t play the Star Wars movies that we brought from home, that friends had given us, the one thing that we were looking forward to. We can’t seem to order lunch because he hasn’t officially been admitted despite being IN our room and Shawn not having eaten anything for 18 hours. Each nurse has their own interpretation of the rules and how we can and cannot use the meal voucher. Fuck it, I’ll go to the cafeteria and buy him lunch with my credit card. Fuck you. Fuck CHOP.

Agony. The radiology attending and nurse practitioner came by to explain the radiation plan. Short term and long term side effects. Exhaustion.  Cognitive disabilities. Hearing loss. Memory loss. Skin changes. Pain. Future cancers.

Shame. Why can’t I ever do this without getting angry? Without overreacting to stupid shit like the view from our room or a movie not playing, which they then fixed, like they always do? Why can’t I just deal with this? Why do I have to live this so publicly? The nurses and doctors are too understanding. They humor us. It’s condescending. It’s their jobs. It’s our lives.

More confusion. So what exactly IS his diagnosis? How will we know if the treatment is working? Answer: we won’t. How many other kids have you treated with this? Answer: two. What happened to them?  The same two that the neuro-oncologist told me about when I asked her the same question. What happened to them? One now dead, one now a healthy teenager. How will we know what path we’re on? We won’t. We’ll monitor his symptoms. How will we know if he’s in remission? We won’t. He’s a kid. He’s not a number. We will watch him. We will see how he is doing. How he’s feeling. If he’s alive in  5 years then his 5 year survival rate is 100%.

Appalled. The nurses gave me an orientation tour of the 3rd floor. There’s snacks. There’s lunch every day. Child Life told me that if we couldn’t get our own Star Wars DVDs to play that they have several copies of all the movies. We’ve been at CHOP for almost 7 months. I’ve asked over and over if we can get any of the Star Wars movies. They answer has always been no. Child Life on the PICU and Neurology and General Pediatrics didn’t have them. The Family Resource Center Library didn’t have them. Oncology has them. Our neurology social worker told me that Oncology has all the resources and that we should use them. We’ve spent 6.5 months in this place, undiagnosed. We’ve seen kids and families in a range of departments in crisis. In pain. In tragedy. We’ve seen kids with tubes sticking out of them. In wheelchairs.  Missing limbs. Criss-crossed sutures circumferencing their shaved skulls. Tubes coming out of every orifice in their body. Weighing nothing. Bloated from steroids. We’ve seen kids die. Oncology Child Life has several copies of all the Star Wars movies. There’s snacks. There’s lunch. There’s private recently renovated rooms. There’s money. Lots and lots of money. I talked with our nurse practitioner about the discrepancy. She told me that often donors earmark money for particular departments/conditions/diagnoses. So cancer gets the money. Lucky us.

Disorientation. On the east wing, I can hear vague echoing ghost-like crying of kids far away. I’ve heard this every time we’re on this side of the hospital, on any floor. It’s eerie. It’s haunting. It’s just a strange echo, probably because we are above the atrium.

 

After many hours of waiting and talking to a lot of doctors, nurses, social workers, three failed attempts to order lunch, and finally – done – nothing else to wait for, I went down to my car in the parking garage directly below our room. The one that only inpatient and Emergency Department families get to park in. The one I lied to get into this morning, by telling the guard that we were going to the ED and then explained to Shawn what “a little white lie” meant and why I considered it ok because we were going to be inpatient later that day but if we told them that we were going to IR, they’d tell us to park elsewhere. I gathered our clothes and snacks, the ones I hadn’t wanted to lug around with me all day, waiting to get to our room. I got back into the elevator. I could spot the oncology parents, just like I could before. The most haggard looking. The ones with the most baggage. And I pressed Floor 3 first.

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Diagnosis

~ Blue Wristband Parent ~ 4 Comments

I’m not going to try to make this post anything spectacular. I’m not going to attempt well-written words. There is no theme. There are no pictures. No catchy bloggy things. I’m not going to try to recap the last 6+ months of the search for a diagnosis, it’s all here in previous posts and the “Old Posts” page that chronicles the first half of the journey. I’m not trying to reach out for anything. I’m going to explain this as best as I understand it. I might get some of the medical details wrong. And I won’t go through my usual proofing and editing process. I just want to share the information.

On Wednesday Shawn had a biopsy of one of the nodules on his spine. On Friday afternoon, his primary doctor stopped by his room at CHOP and told me that she had some news. The news was that some of the biopsy results were in and that the tumor is malignant.  He has a Primary Disseminated Embryonic Tumor. It’s malignant. The prognosis is a bad number.  There are three potential types – medulloblastoma, pineoblastoma, and supratentorial PNET. The source of the primary tumor defines which it is but we will never know for sure and the treatment is the same.  It’s Grade IV.

Today Shawn’s father and I met with our new team (some overlap from our old team) in neuro-oncology. We learned the treatment plan. It’s aggressive and brutal. We’re scared out of our minds.

We finally have a diagnosis and a plan, the two things I’ve wanted for a very long time. It’s the end of a long journey and the beginning of a longer one.

A Tumor Is A Thing

~ Blue Wristband Parent ~ 1 Comment

A.K.A “The Best Bad News There Is”

In the absence of a condition or disease to google or seek out support groups, I’m left with… nothing. Nothing to google, no parents or former patients to talk to. Nothing. So eventually I began to look for the emotions themselves. What does it feel like to experience a deep void? What does it feel like to be in limbo? What does it feel like to care for a sick kid? What does it feel like to lose a child? What does it feel like to be a primary caregiver of someone with a serious illness? If I can’t seek comfort from people who’ve been exactly where I am, maybe I can seek comfort from people who’ve experienced the same emotions that I am experiencing, regardless of their actual circumstances.

It doesn’t take all that long to find those people, if you start looking around. Exactly how I started looking, I can’t say. I’m not actually sure that I did. I think I just let down some of my guard. I think I began writing and talking in a way that allowed others who have experienced those types of emotions to come to me. And they did. People who’s children died as children. People who’s spouse committed suicide. People who experienced miscarriage and due to a variety of circumstances came to the realization that they will not become parents of living children. People who grew up with siblings with serious and chronic illness – the unsung “CHOP siblings.”

I intended to write an essay about that topic – those emotions and how they play out in our lives. My life. And I started to. It’s about half written. And I might finish it at some point. But then this happened…

March 16, 2016

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Biopsy Day! I’ve been waiting for this day for months! We’re finally going to go in and try to grab one of the nodules. It was our first planned CHOP admission after 13 ER admits. Last night I spent two hours packing the same stuff into the same bags that I usually throw together in 10 minutes before our drives to the ER at the last minute. I couldn’t decide if it felt like Christmas Morning (it’s here! It’s finally here!) or how it might feel the night before a family member goes to prison.

 

This surgery carries some risks. The surgeon has to cut through bone and then she had to cut something off his spinal cord. Not trivial stuff. She said that one of the biggest risks is that she won’t be able to find anything. That we’ll cut him open, beat him up some more, and do all of this and get no new information. But we have to do something.

8:30 AM

I’m in the surgery waiting room. I’ve written before that this is a place in the hospital that I actually like. There are lots of emotions in this room. Here’s what’s happening right now:

  • A father is entertaining two young kids with iPads, puzzles, juice drinks, and games. Their sister is having some sort of routine procedure. They’ll be going home soon. The father told them that they can sleep on the car ride home. The kids set up a travel doll house and began making up stories.
  • A surgeon just told a couple, who came in at the same time as us (I recognize the stroller, and the kid’s first name from the pre-op waiting room) that the surgery went well with “no surprises”. He gave them some details that I couldn’t quite hear, told them that they can call his office day or night and talk to a person if they have any questions, and when to schedule a follow up appointment. They looked relieved. After the doctor left, both parents took to their phones and began texting or emailing or blogging or Facebooking or something, I have no way of knowing exactly what they were doing. But clearly they were communicating the information about their kid’s surgery to other people.
  • There’s a couple standing by the coffee machine hugging each other through tears in total silence. They aren’t making a single sound but they’re clearly crying. There are places in the hospital that you can go if you want to be alone (I know, I’ve found them) and there are signs on the walls in this room letting parents know to tell the front desk staff if they want or need more privacy. But that couple doesn’t seem want more privacy. I think they actually have privacy in the sense that I don’t think they even notice or care that there are other people in the room.

3:30 PM

The neurosurgeon found a tumor this morning. A tumor is thing.

As she was telling me about it, I went blank. I stared at her, memorizing her face, how she penned her eye liner, the shape of her nose, telling myself to focus on the words she was saying because those words are important. I will want to know this information.  It wasn’t because I was devastated by the proclamation of a tumor. It was because I was relieved.

A tumor is a thing.

A tumor exists in space. It’s a tangible thing. It can be touched. It can be examined. It can be biopsied. It can be removed. It’s unlike emotions in that sense.

Well, except that this one really can’t be removed. It’s entangled and glued into the nerve roots in a way that the surgeon said she hasn’t seen before. But no matter, she cut out as much as she could and it’s likely that pathology will be able to give us a diagnosis within the next few days. And she was confident that there was no permanent damage to the nerve roots.

There was tangible relief as I talked to a succession of people. Elated relief. Celebratory relief. Several members of “The Team” came by throughout the afternoon and evening, some clearly on their way home (backpacks and jackets on) but they’d heard the news during the day and wanted to check in, others because I texted them and asked them to come. “The best bad news there is” his current primary doctor in neuro-oncology said. “A tumor is a thing” another neurologist said, while warning me not to get my hopes up TOO much but acknowledging that we should allow ourselves to feel encouraged and hopeful by this.

Throughout the day I’ve been seeing people here who recognize me and me them and we say hello, sometimes by name, and we chat for a few moments. Doctors, nurses, housekeeping staff, Shawn’s hospital teacher, the woman from registration, cafeteria employees, you name it. CHOP used to seem so big. Now it seems so intimate.

I’m not so naive as to believe that if we’re right about this, that the relief won’t quickly turn into a new type of stress and problems. This will still get worse before it gets better, no matter what the outcome of today’s procedure turns out to be. The pathologists will provide the actual diagnosis, and it’s not a done deal, but there’s a better than average chance that we will have a diagnosis and a treatment plan within the week. And those are also things.

 

Liminality

~ Blue Wristband Parent ~ Leave a comment

I majored in anthropology in college and then went to graduate school for the same. I was primarily interested in biological anthropology, although there was no such differentiated major as an undergrad. At that time (and probably still now, although I don’t know, I haven’t paid attention for over a decade) the “four field approach” was key. Every anthropology student at all levels had to be proficient in cultural, physical (biological), archaeological, and linguistic anthropology. Every grad student had to be able to teach all four at the intro level. As an aspiring academic, I did just that. I even taught at the medical school as a lab assistant in the gross anatomy lab for a couple years, a thought that crosses my mind every now and then while looking at the usually 20-something year old medical students and residents and even the attending physicians and look up their bios and do the math. Were any of these people ever my students? Probably not. CHOP doctors don’t generally come from that school. I know because I read their bios. Medical school is probably its own liminal state.

I’ll skip the discussions of Victor Turner and the origins of the term liminality. I cannot discuss the theory. This is not an academic paper. I couldn’t write one of those anymore if I tried. I’m very far out of the academe. This essay is about my own liminality, and Shawn’s, as we are experiencing it right now.

So lets just stick with good old wikipedia for a definition. Because we’re being intentionally non-academic. And it works.

Liminality (from the Latin word līmen, meaning “a threshold”) is the quality of ambiguity or disorientation that occurs in the middle stage of rituals, when participants no longer hold their pre-ritual status but have not yet begun the transition to the status they will hold when the ritual is complete. During a ritual’s liminal stage, participants “stand at the threshold” between their previous way of structuring their identity, time, or community, and a new way, which the ritual establishes.

My academic friends have used this term more than once when reading my blog posts and when we’re chatting about what’s going on. My elevator post sparked the most discussion about the topic. Because what can be more transitionally ambiguous and disorienting than being literally in between floors in a pediatric hospital? There were times that I got off on the wrong floor or pushed the wrong button simply because I was distracted and couldn’t remember where I belonged on that day or hour.

I’ve also told people that when we’re at CHOP I sometimes think that this is what a foster kid might feel like. No matter how spread out we might be in a room there, if they tell me we are moving rooms or floors, I can pack all of our stuff up into two bags in less than five minutes and carry it to wherever we’re going next. And sometimes I have to do it faster than that.

The current plan involves trying to keep us at home as much as possible so that Shawn (and presumably the rest of us, too) can live a “normal life”. But even home doesn’t feel like home. Bill and Lilly physically moved us into this house in October while Shawn and I watched via text messaging and FaceTime. And in this house, we sometimes have a lot of fun. But often “sick” takes over. This house is good. It’s our home. But it’s not our “normal” lives. And we lost our cat.

This week I was CCed on a letter from Shawn’s primary neurologist to his primary care pediatrician, summarizing an outpatient visit but also telling her that Shawn will now be followed by a doctor in neuro-oncology. This was not new news to me. We’ve had these conversations for many weeks. I know all these doctors. I trust all of these doctors. But it’s inherently disorienting to be transferred to oncology without an actual diagnosis and treatment plan. I’ve said before, too, that I will probably be one of the few parents to feel relief when given such a diagnosis. We just need a plan. Right now we are in no department. No one knows what to do with us. In that elevator post, I wrote about the parents getting off on the oncology floor looking the most tired and haggard. If those are my people then let me be with them. Let’s meet the kids there. Let us structure our time, identity, and community in a way that makes some amount of sense and provides some sort of structure and home. Because we certainly don’t have that now.

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Floor 7, Going Down

~ Blue Wristband Parent ~ Leave a comment

The elevators at CHOP talk to you. A child’s voice announces which floor you’re on and which direction you’re going next. “Floor 4, goooing up!” it says cheerfully. Sometimes with a British accent.

We’ve spent most of our time here in the South Tower, primarily on the 9th floor, neurology. Floor 9 is the highest so everyone gets off either before or with me. I sometimes play a game in which I don’t watch as parents push a button when they get on the elevator and I try to guess on which floor they’ll get off. Each floor has one or more departments which it primarily houses. We’ve been on three of them inpatient, but never below 7, although our stay on 8 was just one night because that was where there was space available. The parents getting off on 3 always look the most weary and haggard. I can usually guess them with the greatest accuracy.

1st: Emergency Department
2nd: Nothing
3rd: Oncology
4th: Surgery
5th: Gastroenterology GI, Hepatology, & Nutrition
6th: Cardiac Intensive Care Unit (CICU)
7th: Pediatric Intensive Care Unit (PICU)
8th: Pulmonary Intensive Care Unit
9th: Epilepsy Monitoring Unit (EMU), General Pediatrics, Neurology

On Thursday of last week, Shawn had another MRI. Based on the results of it and other recent tests and the fact that we can’t seem to control his symptoms with procedures or medication, the doctors and I discussed some surgical options. None of which sounded terribly good to me. After a subdued and somber discussion, we decided to talk about it again in the morning.

It was 7:25PM, the cafeteria closes at 7:30PM and I hadn’t had dinner. I jumped in the elevator (“Floor 9, Going Down”), grabbed a pre-wrapped burger, and headed back up. I was foggy and emotional from the discussion with the doctors. The elevator was crowded with mostly parents. I looked at the panel and every button was pushed except 7. The PICU. I’ve written previously about my fear and hatred of the PICU. I looked around and said “oh, come on, no one’s going to the PICU?” and everyone laughed. “Oh god, we were just there last week, it’s the WORST!” said one mother. “I am SO glad we aren’t there anymore and are back on 5.” said another dad. And for the short elevator ride, we all seemed to find some sort of humor in it between ourselves.

On Friday morning, the doctors and I agreed on which surgical procedure to do. A diagnostic one that will hopefully give us some more clues as to what’s going on with Shawn. At best we might even get a diagnosis.

The procedure requires the following days to be on the PICU. Even I agree with this. He has a tube coming out of the side of his skull, after all. He’s had this procedure before, so I knew what to expect. That doesn’t make it easy.

I met with a hospital social worker a couple weeks ago. I’ve never paid much attention to the social workers here because I didn’t think they applied to me but she has put me in touch with a lot of financial and other resources that will hopefully be helpful to us. She also told me that she thinks that Shawn and I have both experienced actual trauma here. As I followed Shawn’s bed onto the PICU floor and started physically shaking, I began to think that she might be right. I remembered the importance of the fixed cervical vertebrae on the PICU. Don’t turn your head. Don’t accidentally glance in any rooms because you can’t unsee something you wish you hadn’t seen. I also remembered the words of a doctor back in November – “you can’t trust joy in the PICU.”

Day 2 on Floor 7 and things were calmer. The roommate we had when we arrived on Friday night had been transferred to a different floor and we didn’t get a replacement so we had the room to ourselves for a night. Our daytime nurse looked at the race t-shirt I was wearing and encouraged me to go for a run outside. Since we discovered that we all run competitively (at times) I chatted with her and our night time nurse at shift change about running and racing and the challenges  and benefits of training through our various life stressors. They told me about how their views of working on the PICU have changed at times. About focusing on the horror stories and the wonderful experiences.

Day 3 brought another roommate. A newbie on his first admission. A very logical father raving about how wonderful the PICU at CHOP is during his 21 hour stay here. They left the next day for their specialty floor. You can’t help but overhear everything in these small rooms with each side separated by only a curtain so I knew that they had a clear cut diagnosis and a plan to spend three days on floor 5 and then go home to resume their lives. Lives now altered by the kid’s newly diagnosed disease, but with a plan for how to manage it. I was slightly jealous of them.

Day 4 brought some test results for us. Still no diagnosis but some new clues finally showed up. These results mean that we’ll be staying for at least a few more days but we’re moving in some sort of direction. I’m not sure yet whether that direction is forward or not but we’re doing something. And something is better than nothing. Even bad news is better than no news at this point. Moving in some direction is better than moving in no direction.

Today is Day 5 and Shawn is currently working with his hospital teacher. Other than bingo at 2PM, school is Shawn’s favorite part of the day here. I went out to grab a cup of coffee. When I got into the elevator to go back to the room, I had it to myself. This time 7 was the only button pressed on the panel.”Floor 7, going up!”

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