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.