Update #3

#ItsJoTime

The days are short. There are a lot of people in and out of Josephine’s hospital room. Physical Therapy, Occupational Therapy, Speech and Language, Child Life specialists to explain what’s happening in kid friendly language, child psychologists and, because its a teaching hospital, there are medical students, residents, and fellows for every team of attending physicians (pediatrics, oncology, neuro, radiation). There are nurses, care partners, social workers, case managers, anesthesiologists. There are friends of mine, of Ryan’s, of Josephine’s. There are family members. The list goes on and on.

And then there are the nights. The long, tantrum-filled stretches of darkness. When there is no one around to district us from thinking that the world is crashing down around us.

Before a quick trip to pick up Randall from daycare yesterday, I had not stepped foot outside of the hospital walls since Monday afternoon. Monday her breathing worsened, and the fear that our fight could be over before it even begun hung around my neck and pressed on my chest like the weight of a 25,000 days un-lived. Days where we had imagined she would start kindergarten, see the ocean, fight with a best friend in middle school, go to prom with her high school sweetheart, get her heart broken, go to college, move out of our house and to a new city, fall in love, get lost while traveling overseas, have a fulfilling career, become a mother herself, run for office, change the world. It was as if the decisions Ryan and I were making meant she would do those things or not. Its obviously not that simple. Not one case study or risk-model will predict what this specific brain tumor will do. I know the selfish hopes and dreams I have are more about me than her. Every single person who meets her here, or watches her videos on Facebook or Twitter, smiles. That is important.

When I did walk outside last Monday, the sun was shining and it felt like that was wrong. Kinda like how you wake up in the morning after getting a bit too spirited the night before and not understanding how people are like, JOGGING out there. Your head hurts, you are nauseous, your eyeliner is all over your face and people are just out there, like, running? For fun? HOW is that possible? Cancer is like that. A continuous hangover. You can eat dinner, sometimes. Sometimes you can’t. You can hold your head a certain way for a minute and breath through it. Sometimes you can’t.

The worst part is we can’t really talk to Josephine about it. Sure, she knows what’s happening and what we’re doing. She understands the treatments. She likes the nurses. But she’s three, which means not every question I want to ask her is developmentally appropriate. Not every vocabulary word is one for which she has a schema. But I can tell you this. That little girl has never once been scared. Wants to hold someone’s hand while they do a painful procedure? Sure. Scared to actually do it? Never. She tells the adults how to put medicine in her NG tube and her IV with the least pain. She is incredibly specific about when she wants wet wipes vs. dry, how she wants the table to eat her Jello, where she wants to go and when. She pushes her own nurse call button and unhooks her own monitors, and moves her own IV poll when she needs help. She amazes us.

So, how are we dealing with all of this? Here is our (current) plan:

(1) 33 doses of radiation shot directly at the site of the tumor. Once a day, Monday through Friday, we will put her to sleep, lay her in a machine, and zap her with photons. We will shoot this debilitating radiation to stop the division of the tumor’s cells and hope that we can stop enough to shrink or kill it. We will brush her hair and apply Aquaphor to her chapped lips as she wakes up from anesthesia. We will chuckle at how big she rolls her eyes when she tells us she doesn’t want to do a treatment today. We will do it anyway.

(2) 42 doses of chemotherapy pushed directly into her NG tube and into her stomach. Once a day, every day, until the radiation course is finished. We will turn down the lights, read a bed time story, argue with her for a while about brushing her teeth, then curl up in a hospital bed, take her vitals, and drip poison into her tummy. We will do this with the hope that the poison will be absorbed into her blood and help the radiation attack the dividing cells of the tumor.

(3) We will keep her on steroids to control the swelling. We will dose her with as much as possible every six hours to ensure that any swelling from the radiation will not do what the tumor would have had we let it: inhibit the functioning of her brain stem and interrupt the connections between her brain and her body: her heartbeat, her breathing, her blinking, her digestion, her dreams, our dreams.

(4) We will keep on our game faces. We will not crack when she tells us she wants to keep her tumor and leave the hospital. We will laugh when she has trouble controlling her gas. We will say “yes” every time she calls our names, even late at night, even through pain, even through delirium of drugs and drugs and more drugs. We will not walk away when we are frustrated. We will hug her when she needs it. When she pushes us away, we will hug her again. We will sing annoyingly in the bathroom even though she yells at us to stop and we will dance like fools at the foot of her bed until she agrees to let the free oxygen tube blow by her face and help her keep her levels up when she sleeps. We will do all of this regardless of the odds of our success.

(5) We will allow every doctor, nurse, care partner, and therapist to spend as much time as they need with her, because every moment means they will get to know more of who she is, who she has the possibility of becoming, and how she will change the world. We will trust their judgements. We will let them do their jobs.

(6) We will love her.

(7) We will not give up.

Brain cancer, you’re in for the fight of your life. Are you sure you want to keep coming at us? Because you’re not just coming at Josephine, you’re coming at all of us and as far as we’re concerned, #ItsJoTime.