Chapter Nineteen, Mama Bear

As in other posts, the parts in italics were written at the time. The parts written in regular type were added today.


In May of 2012 we were in the middle of radiation. Grammy, Papi, Sam, and I were all staying in Room 201 at the old Ronald McDonald House West. There was a queen sized bed that Sam and I shared, Grammy slept on a roll-away sandwiched between the edge of our bed and the wall, and Papi used a twin sized air mattress on the floor at the foot of our bed. The wagon we borrowed from the hospital and used daily to transport Sam to radiation was pulled into our room at night too so that it didn't wander away in the night. It was a tight space, made smaller by the fact that the windows were stuck shut and the "all terrain" wagon tires off-gassed terribly and sometimes the whole room smelled like black rubber. We got up multiple times a night. We carried green plastic barf-bags everywhere we went. We got up early each weekday and hauled a fairly miserable kid up the street, into the "top of the hill" 10th floor of the children's hospital, down the elevator to the 9th floor, down the hall and across the little skybridge to the adult part of the hospital, past the smells of 2 different coffee shops that made me want coffee and made Sam gag and retch, past the gift shop, past the main lobby, past surgery waiting, past a painting of red flowers, past the gondola cars going up and down, past the 2 pieces of etched metal art, past the painting of the ladies in hats having tea with their donkey, and down another elevator to the 4th floor lobby of the radiation department. Small dark patches and some fine blonde peach fuzz were all that remained of Sam's hair. The rest of his hair was spread out over the beds and floor of room 201 and no matter how much we washed the sheets or vacuumed, the fine, brittle bits of shed hair still found their way into our mouths and eyes. Sam was failing his trials on tube feeding. We tried a lot of things to get nutrition into him. Each new thing seemed like it was working, but then became unbearable after a day or two. Sam was losing weight and strength. It sucked.

BUT... it was also an amazing time.


Each good moment felt like an incredible gift. Each beautiful thing was acutely beautiful. Achingly beautiful. The cool mornings. The flowers budding. The sky and the birds and the leaves. He was alive, we had hope, we were together, and it was good. Even when it was so terribly hard.

May 14, 2012

7:41am

Beautiful sunshine peeking through the leaves, cool breeze, happy kiddo feeling slightly better after two days off from treatment. Hopping in the wagon for a ride to radiation treatment #15. After today: 6 craniospinal treatments left and 10 treatments localized at the tumor site. We got this.

3:29pm

I'm kind of a bear when my kid isn't getting what I think he needs. Just saying. Good thing I'm nice the rest of the time, or I'd totally be "that mom".

A friend commented that it was fine to be a bear if needed. I replied:

4:31pm

Oh, I don't mind being a bear if that's what it takes, believe me, despite the fact that I don't enjoy it at all. Fortunately for all parties concerned, the folks here are FABULOUS and bearish behavior is rarely needed.

I remember being a bear that day. I stood in the radiation recovery room as my pukey, starving child was waking up from sedation and lectured the radiation doc, a neurosurgery resident (or was he a fellow? I don't remember), a couple of nurses, and a tech on how disgusted I was by the fact that we, as healthcare providers, let people fail before we intervene. I included myself and talked about my ICU experience where patients had to decline and prove they "needed" this intervention or that treatment or whatever before we provided it. I told them I thought it was reimbursement based and, as such, unethical.  I said, "We let them fall of the cliff and then we say, 'Oh, here. Let me catch you.' Why do we do that? We all know the cliff is there. Why do we let them fall?" Kudos to them for listening. I wonder if it made a difference in how any of them practice medicine or if I was just another in a list of emotional, ranting mothers. I know that the experience of watching Sam waste away totally altered how I listen to patients and their families.

7:52pm

"I can see darkly through these."

May 15, 2012

2:29pm
Today and yesterday both have been good days. Two in a row! We have finally found a tube feeding that Sam can tolerate at the rate he needs to maintain (big sigh of relief). He's jolly and playing. We're taking walks in the sunshine. Yesterday he asked for milk and... actually drank some of it! This is the first voluntary intake in over 2 weeks. His blood counts are still really low, but he seems to be rolling with it. We're just being extra careful. Limiting visitors, lots and lots of hand washing. Today was radiation #16. We're officially more than half done. Thanks for hanging in there with us, friends. We couldn't have made it this far without all of the incredible support we've received from you. Here he his watching the tram this morning through the radiation waiting room window. Mr. Concentration.

 I was asked how long we would be staying up in Portland. I responded, 

8:26pm

How long we stay depends on how he is doing. Technically we could be coming home on weekends, but he's been too sick to get that far from the hospital. So far this week is going well, but chemo is tomorrow. Maybe home this weekend for a day or two? I hope. We're all pretty ready for our own beds :)

Papi and Sam in the golden light of evening. Heading back to the RMH in the borrowed "Pulling for Lisa" wagon.

Next: Chapter Twenty, A Wagon of His Own