The Tristan Diary Part 4: Moving into Consolidation

Surgery, Safeway, firetrucks, and a rest in San Francisco, Thursday, August 27th

It’s hot and sunny near at my brother’s apartment near Ocean Beach. Phoebe and I are watching a movie on Netflix and Oma is giving Tristan a bath. I’m tired.

Tristan and I returned to the city Sunday afternoon. Not the best timing; there was traffic from Petaluma on. We were absolutely exhausted Sunday evening.

Monday we rested, went running, and hit Safeway. At the grocery store, I was afforded the opportunity to collect additional data on my analysis of the correlation between Safeways and firetrucks. Turns out it isn’t only in Eureka that you can expect to find a firetruck in the parking lot of Safeway and a bunch of uniformed firemen (and fireladies!) shopping inside. It’s here, too! I’m going to take this field research much farther, visiting Safeways throughout the state. Or maybe if you all have additional data to send me, I can include it in this important work. A meta-analysis! Anyway, while I recorded my new data point, we got a ride in the firetruck around the Safeway parking lot. Tristan got to wear a real fire helmet and ring a firebell. It was awesome. Then, yesterday, we went grocery shopping again…and AGAIN the firetruck was there and the team was inside the store. There is simply no denying this important correlation and its implications: firefighters must LOVE to cook!

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Between trips to Safeway, Tristan and I had a hospital stay. Tuesday morning before dawn we drove to the Children’s Hospital and checked in at Surgery. Tristan wasn’t thrilled to be there again, and wasn’t happy that we’d have to sleep there, but this time around was much easier than last week, when the steroids were still high in his blood and he was outraged to be denied food for 14 hours. Shortly after 9 I held him was he was put under. This time it sucked, as he no longer had his picc line and the anesthesiologist had to use a gas. As with each OR procedure, I laid him down and left sobbing. I hate it.

I read in the waiting room, worrying and feeling sad that Tristan was having a plastic lump implanted in his chest. Yes, I get that this is a good thing, but it’s still horrible. Finally I was called into Recovery to join my baby. He took a long time to wake up, and nothing about it was as smooth as the other times. For the first time, he had been intubated and had quite a bit of irritation in his chest. He could barely talk and had a raspy cough. Eventually he woke up all the way and ate some chips. We had a wonderful nurse at his bedside, making sure he came to smoothly and was breathing ok. She arranged for our room on the sixth floor, in Hematology-Oncology, to be ready, and reported that one of our favorite nurses, Khara, from our earlier stay there, had requested us. So sweet!

We were transported upstairs. Tristan wanted to be held and fell asleep again in my arms. While he slept, our main doctors, Dr. Kumar and Dr. Sabnis, came to see us. They were able to give me, for the first time, Tristan’s “road map” — or treatment plan — for the next three years. It was not with joy that I realized the worst post-Induction part of his treatment will fall over Christmas, when we’ll have to be in San Francisco so he can have chemo four days a week. Ug. The doctors assured me that most of the time things change and the schedule is not in concrete. It’s likely those weeks will shift away from Christmas, but, if they don’t, the Giants will give us lots of gifts. The Giants!! Tomas will be jealous. Guess there’s an upside.

Tristan woke up, the doctors left, and the afternoon unfolded. We watched movies, played with a preschool kit from Noni, read books, ate (though Tristan’s appetite was not big). He wasn’t in pain, but just didn’t look good. In the evening he ran a fever, which is common post-op but was too high for the doctors’ liking. Tristan was given antibiotics and watched closely. In the meantime, I decided I couldn’t handle the drive back to Humboldt the following day, wanted to stay nearer the hospital, and wanted to save some energy for making the trip multiple times over the next few weeks. I spoke to my mom, who said that instead she and Phoebe would drive down to spend a few days with us in the city. Tristan’s fever subsided to something not-too-scary before we went to sleep, and we both actually slept fabulously and weren’t up til after 8 on Wednesday morning. Our favorite nurse Khara was back again and took great care of us. Although Tristan’s fever the night before meant a possible second night in the hospital the doctors had decided he was doing great and we’d be released later that day.

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A physical therapist came to our room to have a look at Tristan, who hadn’t complained much of leg pain in the past few days, but isn’t walking normally and has a lot of trouble going up stairs. She gave some strengthening exercises.

We were discharged a bit after one, and home at Chris and Agi’s about two. It was great to be out of the hospital and we were looking forward to Oma and Phoebe’s arrival. I prepped dinner for them and we had a great evening together. Somehow Tristan and I have settled into a routine of watching Mulan every night; we included Oma and Phoebe in our tradition last night.

In addition to a chemo given intrathecally during his lumbar punctures and the Vinchristine push he got Tuesday at the start of Consolidation, Tristan is taking an oral chemo every night this month. I have to change his diapers wearing examination gloves. The pharmacist asked if there might be anyone in the household past child-bearing age who could do the changes instead. I don’t think I need to tell you how horrible this is. Fortunately I realized before putting Phoebe in the bath with Tristan that that might not be a good idea — I don’t trust him not to chemo-pee in the bath. On the upside, Tristan is allowed to bathe post-port surgery. Modern medicine has the most amazing glues for holding skin together.

Sorry, I really slid into the depressing. Should have stuck with the fireman theme. I’ll be sure to report to you all on tomorrow’s trip to Safeway. My bet’s on there being a firetruck in the parking lot.

A rest in San Francisco and back to Family House, Monday, August 31

Kids are so weird. The other night as we were falling asleep, Tristan said to me, “Mom. Mom. I love you so much. I will never leave you in Singapore.” Now where did that come from? I mean, I love Singapore and haven’t said anything bad about it to Tristan. Guess I wouldn’t want to be left there either. I would like to eat there though…

I don’t have much medical to report on Tristan this week, as our hospital visits will be later today (Monday) for labs and again tomorrow for another lumbar puncture with chemo. He’s doing great though. Yesterday he and I took one of our many walks and he walked on his own two feet, rather than sitting in the stroller, for many blocks, probably buoyed by the camo pajamas he was wearing, plastic World War I army helmet on his head, and spotting scope in his hand. Ready for the trenches. He is also doing quite a bit more almost-running. Tristan did run fevers for several nights after last week’s surgery, but we seem to be past that now.

This past week we chose not to return home to Kneeland — just too exhausted after the surgery and hospital stay — but instead got a visit from Oma and Phoebe, who arrived at Chris and Agi’s last Tuesday evening, the day we got out of the hospital. It was so fabulous to see them, and I had positively been craving some Phoebe. We took walks to the beach, played in the Queen Wilhelmina flower garden in Golden Gate Park, drove to Chinatown where Phoebe got to indulge in the funnest-of-all pastime of kitsch-shopping, planted an herb garden, did coloring, and watched movies. One evening, while I cooked dinner, Oma played out front on the sidewalk with the two kids. They drove Tristan’s plastic fire engine around and had an absolute ball. I loved hearing their giggles. So, too, did many of the neighbors, who came over to introduce themselves to my mom and all invited the kids over to visit their places as well. It was a sweet neighborhood moment.

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This past Saturday Oma and Phoebe drove home, and Tristan and I moved back to Family House (the free UCSF-associated facility for housing out-of-town pediatric patients and their families). It was so fabulous to be able to stay at Chris and Agi’s wonderful apartment while we were more or less based here in the city for treatment, but now that we can split our time between home and SF, it seems best to give the downstairs renters a reprieve from our kid sounds, readily transmitted through the 1950s architecture.

This time Family House is a whole different ball game. It seems each floor takes on a culture of its own, depending on who the long term residents are. On our new floor, Tristan and I are the only English speakers. The place is populated by several huge Mexican-American families. I can’t tell who belongs to which family, kids and kid patients included. Several times a day, the most wonderful smells waft from the kitchen. Despite the stringent rules about food storage and hygiene, somebody is defrosting raw meat in one sink and last night’s pot of beans, which I am tempted to try, stays on the stove. I don’t mind at all — it’s way more like home. Not to mention, Tristan’s numbers are good right now and he’s not neutropenic. It’s nice to have a break from the sterile. I left my pot of rice on the stove.

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We have really been enjoying exploring the Sunset District, where Family House is located. Apparently this is the cool place to be these days. There are a million restaurants, and most of them were overflowing, crowds spilling out onto the sidewalks, all weekend. Yesterday I had Korean food for lunch and Thai food for dinner. As Tristan and I explored and walked yesterday, we saw three police actions, including flashing lights, arrests, blocked traffic, the whole deal. I had to explain to Tristan that it is not advisable to go right up to the police cars and policemen during these events, as he was hoping to do.

We are looking forward to going home after Tristan’s procedures early this week. We hope to be home to meet the school bus on Wednesday afternoon!

2 thoughts on “The Tristan Diary Part 4: Moving into Consolidation

  1. Toni: Thank you for posting these detailed and moving chronicles so that those of us on the outside can follow what’s happening without pestering you by email. Tristan is so freaking strong, and you are too. Sending you huge hugs. xoAndrea

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