On Saturday, October 18, we rolled out of bed at 3:30 AM and made our way to the airport to catch a plane to San Francisco. The travel day was uneventful and long, and I spend the hours grading papers on the plane. We landed at SFO around noon. The day before, we had been told that the UCSF family house had a room for us, which we were relieved to hear. If that didn't work out, we had back ups. A friend of a friend offered us her Airbnb in Inner Richmond and a Girl Scout mom added me to her Hilton friends and family so we could book at a discount. All very nice offers, but really nothing could beat a free stay 3 blocks from the hospital with breakfast and dinners included. They also provided us with a free Uber from the airport to the house.
The Family House is nice. It is in Mission Bay, a neighborhood that barely existed when I lived in the Bay Area. It is across from a food truck rodeo and putt putt golf course and a block away from a Mission Bay Kids park. There's a neighborhood grocery and lots of coffee shops. Our room was basically a dorm room. There were two twin beds, a fold out recliner/bed, a TV, closet, and bathroom. Not a great set up, but functional enough for the week. We gave my daughter a bed, and then my husband and I took turns sleeping on the fold out chair.
Across the hall from our room was a communal kitchen with a communal food pantry and fridge. Items for everyone were donated from a local food bank. There was also fresh veggies from a local farm and sourdough bread from a local bakery. Each family staying in that "neighborhood" had individual cabinets and mini fridges where we could store our own items. There were tables, couches, toys, and TVs. The house also had an outdoor patio, music/game room (courtesy of the band Train), and a lending library. We were in and out a lot, but they had therapy pets visit one day, crafts during dinner, and a movie night.
Most of the families there seemed to keep to their own floors or were in an out for appointments. There were two families on our floor that we talked to. Most families seem to go home on the weekends, but when we got there on Saturday, one family was in the kitchen prepping for their twin's birthday. They were turning 8. The mom and daughter had been at UCSF since May getting treatment and now waiting on a liver transplant. The dad and son moved to the Family House in August because they didn't want to be separated any more. They are from Arizona. Another mom had been there since January waiting on a liver transplant for her son who was about 2 or 3. She lives outside of Sacramento and goes home for the weekends to see her other kids, but comes back to UCSF every week.
We talked a bit about treatments and diagnosis. It is weird having these discussions because my daughter doesn't look sick. She does not look like one of those kids on the St. Jude's commercials with no hair and pale skin. Outwardly, you would not know that she has cancer. A social worker at the house told my husband that our daughter looks like she is doing really well. She is, and I am hopeful that she will continue doing really well. But, we are also newly diagnosed, and there is a very real possibility that could change quickly.
Anyway, after getting settled, we ventured across the street to get some dinner from one of the food trucks. Later, my daughter and I walked up to Safeway to get some snacks and breakfast items for the week. The last time I lived in CA, I did not have a kid. Walking around the Safeway on 4th and King where all the train stations meet might have made me a little uncomfortable as a single adult, but it's definitely a different experience when you have a kid with you and someone dressed in an ape costume blasting music from their boom box necklace jumps out at you from one of the aisles. I'm just going to chalk it up to exposing my sheltered, suburban kid to some culture.
On Sunday, my mother-in-law and her husband took us out to sight see a bit. Before leaving for SF, my daughter said that one of the things she wanted to do was to see the bridge. So, that's where we went. But, I think my daughter, with her short term memory issues, forgot what she told us. The entire time she had the worst attitude. She was rolling her eyes, complaining about being there and being cold, wondering what we were doing, and just generally being a grump. Its like the time change, stress from traveling and impending medical treatments, hunger, and tween attitude all coalesced to turn her into a giant asshole for the day. And we couldn't even see the bridge because of the fog.
To top it off, no one had a plan. I try very hard to not take on that mental labor and stress when it is not my family we are dealing with. But, sometimes it seems that other people, especially ones who don't regularly live with children anymore, don't understand the ticking time bomb that is a hungry, tired, extremely annoyed kid. In this situation, my brain goes: where is the closest place with easy parking where we could get lunch that I KNOW my kid will like. We cannot go wandering around and eventually find somewhere acceptable. We cannot stay in the foggy part of the city because kid is cold. I looked up nearby restaurants on yelp and find a pizza place 10 minutes away in Sausalito (easy parking + sun shine + food she'll probably like). So, that's what we do. After eating and in being in the warmer weather, my kid was slightly less angry. Slightly. She still had to wander around with adults, which she wasn't thrilled about, and hated anything we tried to get her to look at.
Monday was MRI day. We had just gotten an MRI a few weeks before, but they needed to do another one to get a baseline for their study. It was going to be sedated so they could do brain and spine and do a lumbar puncture. That means nothing to eat or drink after midnight except water and apple juice. The MRI was scheduled for 10:30 AM. Everything went fairly smoothly, except when waking her up from sedation. She hasn't really had any issues waking up before, but this time she was so upset that she did not have sweat pants and had worn jeans instead. She cried trying to get dressed. She was mad getting into the wheelchair and waiting for the shuttle to take us back to the house. Once back at the house, I let her eat as many bowls of Cocoa Puffs as she wanted.
Tuesday she got an echocardiogram. This is so they can make sure the medications don't have an adverse impact on her heart or liver. Then in the afternoon, we had to go back and meet with the trial team to review the results of all the tests so far and talk about next steps. We had also been having delays getting one of the medications in, so they wanted to make sure we could get them. Everything looked good. Her MRI was stable from the last one, so while there is still some inflammation and activity from her surgery and radiation, it is either unchanged or getting better.
After the appointments, we ventured on the T-line to Chinatown, another place my daughter really wanted to go. We went into some stores, bought snacks and trinkets, and went to a random restaurant where my kid hated everything. So, to appease the beast, we went to an Italian restaurant in North Beach where the kid got calamari and pasta, and I got a much needed glass of wine. After dinner, the kid was DONE. So, back to the house we went.
Wednesday was a free day with no appointments. My MIL came up to the city again, and we took the T to Union Square. The last item to check off on my kid's SF To Do list was to go to Ghirardelli. I did not want to go all the way back up to the Marina where it would be cold and foggy, so we just went to the store in Union Square. This was good enough. She got a milk shake and was happy. We wandered around a bit and then made our way back to Mission Bay to the kids park where she could play. The SFPD was having a Halloween neighborhood outreach event with bounce houses and trick or treating next to the park, so that helped the kid's mood. She was climbing out of whatever funk she had been in, though to quote her on the phone with her sister: "The bounce house is a little boring, but you would probably like it."
Thursday we officially started the trial medications. She had to get an IV and blood work to get a baseline before starting medicines. Then, she was given ONC201 and trametinib. The only issue she had was some dizziness after taking them, but it went away fairly quickly. We had to stay in the office for about 2 hours for monitoring and to talk to the nurses about taking the medicines and documenting everything. We were given pages and pages of information. After a long morning, we were able to get some lunch before we had to go back for a final blood draw. During that time, I decided we should pack our stuff and get a hotel near the airport for the night because our flight was so early in the morning.
Once we were all done, we got an Uber to our hotel. As soon as we checked in, it was like the mood shifted. The beds were huge and fluffy. We had air conditioning and privacy. There was a bar. Everyone was happier. We hung out in the hotel's lobby/bar area, playing games, watching football, and eating the food we got delivered from some random restaurant in Burlingame.
We caught a shuttle at 4 am Friday morning. I was nervous about our first flight to Detroit because we weren't sitting together. We had to book so last minute that there weren't any seats together. A nice lady next to my daughter offered to switch with me without me asking, and everything from there was fine.
We arrived home around 5 PM and went down to my parent's house to pick up my younger daughter, who was so happy to see us that she was a tiny ball of chaos until we got her into bed that night. That Friday was my birthday, and when we got home, my mom had chili cooking in my crockpot and carrot cake in the fridge. Even after watching a 4-year-old all week, she still wanted to make my life a little easier, which is incredibly kind. We proceeded to stay home, sleep in, and veg out most of the weekend.
While in SF, we were asked by a few people if we missed CA or what we like about NC. I personally am happy to have lived there, and I am happy to be here now. It's hard to know what kind of community we would have built in CA had we stayed. We were in our 20s, and people in their 20s kind of suck when it comes to support. While it's possible we could have built solid connections, most of the people we knew there have moved away, even people who grew up there. While CA has it's pluses (weather, food, politics), it also would have been a much harder life for us, and to be honest, I don't miss it.
An acceptable song by a boy according to a 4-year old
Justin Bieber, "Daisies"
