Monday, April 25th

Last week’s trip to San Francisco with Tristan was fantastic for two reasons. First, Tristan was a total SUPERSTAR at the clinic. And second, he and I had two wonderful visits with friends and family over the two nights of the trip.

A couple of days before we left for the city, our outpatient nurse Ilana emailed to ask if we wanted to go ahead with a trial to see if Tristan could emotionally and physically tolerate having his chemo given via IV in his hand (versus via the port, hated so vehemently by my son that he now has a criminal record at UCSF for his spectacular port-access tantrums). “Yes!!!” I wrote back, and Tristan a I talked a lot about it. “Here’s the deal,” I told him. “The nurses can give you your medicine in your hand instead, but you have to show them that you don’t mind having it there. If you fuss, they’d rather just use your port.” “Ya, ya, ok, ok. I want it in my hand!” he nodded eagerly. I told him that he could have his port taken out if this worked out. (The port can’t just hang out, unused, in his body. It becomes an infection risk if it isn’t flushed regularly.) “Good,” he said. “I want my port gone because I don’t want anybody to see my bump.” No two ways about it. Tristan knew what he wanted.

Then, at the clinic last Tuesday, the 19th, Tristan was subjected to just about everything that drives him — or maybe any three year-old — crazy. Shortly after we arrived, a nurse smeared the backs of both of his hands with gooey numbing cream. Two hands because the chemo nurse would decide later which one looked like a better bet. After slathering on the goo, which made Tristan shudder, the nurse bound both of his hands in Saran Wrap, and then bound them again in stretchy medical tape to hold the plastic wrap in place. Tristan looked like a boxer. I was hoping he would think that was cool, but he didn’t. His lip quivered. Three nurses and I encouraged him. “Come on Buddy, it’s just for a little while!” He held it together. We watched Rescue Bots on Netflix while we waited for the numbing cream to take effect, waited for the doctors to visit, waited for the chemo order to be filled. The chemo nurse appeared with heat packs, which she bound to the backs of Tristan’s hands. His face scrunched up a little. Two social workers, three nurses, and I encouraged him again. “Just a few more minutes and all this will come off of your hands! Hang in there!” We waited for the heat packs to expand the blood vessels in Tristan’s hands. One of the social workers chatted with him about how he feels about his port. “Yeah, I don’t like my port,” he told her frankly. Finally Tristan’s mummy hands were unbound and the goo wiped off. The chemo nurse picked a hand and unpackaged a needle. Tension crackled in the air around the medical team — they assumed Tristan would freak out as soon as he saw it. “Oh, it’s a small needle,” he said. “I don’t mind if it’s a small needle.” Then, as he always does when he has his blood drawn, he sat unflinchingly while the nurse expertly put in the IV. He continued to watch Netflix and I chatted with our social worker, and the chemo was over before we knew it. Tristan was a rockstar. He was cheered and applauded by the whole team, and he happily went with one of the social workers to pick out a prize. Our outpatient nurse, who had already left, phoned me to say she heard he had done fabulously. “He held up his end of the bargain,” I responded. “Yes he did. Can you come back next week to have his port removed?” Yippee! I’m so proud of my kid. He’s three, and he made a big decision all on his own. He showed everyone he can do this. I know it won’t be easy each time, but I think it was so good for him to let him be pivotal in making an important decision, to show him he is not simply the victim of everyone else’s choices.

Monday night, on the way down to the city for that victorious day at the clinic, we stayed in Mill Valley with Noah and his family. Noah was home from the hospital to recover from low blood counts, and the counts had just bounced back high enough for us to spend time with them. We had a GREAT visit. Susan and I took a kid-free run together that afternoon and another the next day with the boys in strollers. We cooked dinner together, played in an empty park with the boys, and talked. Mid-morning on Tuesday, Tristan and I departed for the clinic and Susan and Noah moved back to the hospital for another inpatient block of chemo.

Tuesday morning we had a surprise invitation to stay with Chris and Agi that night, which we did. Chris cooked a fabulous meal and we had a fun visit. We departed early Wednesday morning to be able to meet the school bus that afternoon.

Now it’s the following Monday, and we’re back in the city again. We’ll spend tonight at Family House and head to the OR at dawn for Tristan’s port removal surgery. On the drive down today, Tristan looked at the other cars on the road and speculated about whether or not those people, too, were heading down to San Fransisco to have THEIR ports removed. Tristan’s guess was that most of them were, indeed, going down for that purpose.