Neuroblastoma Sucks

I have to be honest: the last week has been the most difficult since diagnosis and has left us feeling battered, despairing and terribly sad. Until now I’ve steered clear of military language when describing the disease and treatment. I am uncomfortable with the language of violence. I do not feel like glorifying our situation by using words that falsely ennoble, rather than words that simply lay things clear. I guess I’m a linguistic pacifist. But this week makes me feel like bursting forth with every military metaphor I can dream up. It has been war this week. And our little Toby is on the front lines.

Every night I’ve wanted to write an update, naming and witnessing the day, the medicines, the pain, the loss, the grief. And every night, after an 18-hour day, I’ve realized that there are no words on earth to describe what Toby is enduring and how deeply sad it makes us feel.

We have finished cycle 4 of chemo, one more notch on our collective belt, as we march inexorably toward the next grueling phase of neuroblastoma treatment. In a way this cycle was oddly familiar… I guess we’re already old hands at cancer. But this time we hit a lot of bumps that made us realize yet again how very little control we have over this disease. This was the first cycle that Toby spent in bed. The recent surgery to remove the tumor has taken a hard toll on his body and spirits. Usually Toby spends his time in the hospital in high gear, pushing his favorite piece of furniture, “blue cubie” down the halls, while pretending to be a policeman. Or he creates elaborate scenarios in the playroom with ninja turtles, dumptrucks and alphabet blocks. Or he chats up the nurses and tries out the equipment. Or he acts as ersatz elevator operator, asking visitors what floor they need. Or he does his “homework” on the computer and listens to books on tape. This week was different: he showed little interest in anything but the television and spent every day unhappy and wiped out.

This was our week:

Sunday at midnight, when Toby was still inpatient, we were told that he would start his fourth cycle of chemo the following morning. His IV fluids were increased to 60 mls an hour, readying him for the toxic effects of cyclophosphamide. By 10 am the chemo orders had still not been written. The surgical and neuroblastoma teams came on rounds and the nurses continued to monitor Toby’s fluctuating weight and stomach circumference, in effect waiting for the old fluid to drain while pumping him up with new fluid in preparation for chemo. We took longer walks around the unit and tried to gage Toby's pain level. By noon we were told that we could go home and begin chemo as outpatients on Tuesday. Good news, since starting chemo late in the day guarantees a late start for all ensuing days. We packed all our stuff: the rumpled clothes, diversionary toys, and untouched Toby snacks that had followed us from the surgical floor on Wednesday morning, to the ambulance, the Cornell ICU, the ambulance again, the POU at MSKCC, and finally to the inpatient unit. Five minutes later, word came that one of the docs had changed her mind about letting us go home. So we unpacked and waited for the chemo to arrive. It never did, and at 6 pm I was lobbying hard for one night of semi-normalcy and a discharge. Many, many conversations later we found ourselves in a car headed back to Brooklyn. Never mind that we had to be back at the hospital at 7 am, it felt like the most delicious of escapes to have one night at home.

Tuesday, and things had barely changed. By noon the chemo meds had still not shown up. Cytoxan is a 6 hour drip, so we knew we were in for a long day. Worse though, was the obvious pain Toby was feeling. Our regular nurses were both working in other parts of the unit and I spent the better part of the morning begging for pain relief for my child. I repeated the history, spoke to at least 5 different doctors and nurses and nurse practioners, explained the circumstances, all the while watching Toby quietly clamp his jaws and bear down. He couldn’t look at anything, but kept darting his eyes from me to the floor, to the walls and back again. No smiles, no conversation. He never complained, never cried, and so the new staff just couldn’t believe that he was really experiencing pain. I was the one who cried and finally convinced them that Toby doesn’t exhibit the usual signs of pain. Stephen and I have quickly learned that he generally gets very quiet and withdrawn. It was only when Toby pointed to the saddest face on the pain chart (#1 is a smiley face, #5 has no expression, and #10 has a big frown and 2 tears) that things began to change. If I could have I would have stormed the pharmacy to give him a moment of relief. But finally the order was written for morphine and within ½ an hour he was a different person, more comfortable and willing to be quietly engaged.

On Wednesday we gave Toby his first “bath” since surgery. As I’ve written before, a neuroblastoma bath consists of wrapping Toby’s torso with yards of saran wrap to protect his broviac central line, which juts out of the center of his chest. We fill the tub with about an inch of water, remind him not to splash and quickly clean him up. Wednesday’s bath was further complicated by the 20 lb backpack attached to Toby’s tubes, as well as the countless bandages all over his body.

It was our first chance to see our son fully naked in a week. And it wasn’t pretty. Toby’s entire lower back, from ribs to buttocks, is covered with queasy-looking, evil black-purple bruises. He has both old and new entry point scabs where the bone marrows were performed. There is a large, 10-inch long dressing that curves around his lower right side, and directly beneath is a puffy gauze pad that covers the site of the removed chest tube. In the middle of his back is an area where some skin was accidentally removed, probably due to excessive use of tape. And there are multiple scratches and abrasions where the ekg leads and catheter were adhered. I looked at my child and wanted to weep. If this is not a body engaged in battle, I don’t know what is.

Thursday promised to be a shorter day and we found ourselves at home while it was still light outside. Too tired to do much of anything we all sat on the couch watching Toby’s favorite cartoons and acting passably human. Stephen said that he felt like he had been sleeping in a bus terminal for a month. I laughed in recognition and then Toby spiked a fever. Two hours after we left, we found ourselves back at the hospital, this time in urgent care (MSKCC”s equivalent of an emergency room). Toby had blood cultures drawn, was monitored, and received a dose of intravenous antibiotic at 10 pm. And by midnight we were back at home, with the alarm set for 6 am the next morning.

And today, we realized that Toby’s eyebrows are gone.

I really don't mean to complain... I hope you'll forgive the rant.

Through this difficult week, we have been blessed by many acts of kindness. The blood transfusion Toby received today was direct from a donor. Delicious, lovingly-prepared food has been delivered every night. Drivers have ferried us back and forth from Brooklyn to the Upper East Side, even through insane july 4th traffic. Nurses have taken excellent, loving care of Toby. Doctors have answered our many, many questions with patience and candor. Hospital staff have gone out of their way to be helpful and understanding. We have been unable to say “thank you” to all of you, but please know that your acts do not go unnoticed. We are so grateful for your continued support of our family.

And speaking of family, Stephen’s wonderful sister Anna travelled from North Carolina to spend the week with us. Her presence, attention and love made the days bearable. Best of all, she confirmed our feeling that Toby is just a flat-out amazing little boy. He’s handling this situation with incredible pluck and strength. I have so many Toby anecdotes to share with you: the joyful things he says, the way he interacts with the nurses and docs, the jokes he makes and the way he sees the world. But it’s getting late and I’m nodding at the keyboard. I’ll tell you all about Toby tomorrow.

Love, mooki + stephen