Month: March 2016

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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