A week and a half ago, my youngest son Tristan was diagnosed with leukemia. Below is a journal with a little history and an account of these last ten days.
I had begun thinking about this as the summer of sickness for Tristan. On June fourth we were on the school camping trip. Tristan suddenly developed a cough and a fever that night. The fever lasted a couple of days, then disappeared. The cough persisted. In the middle of the month, I took him to see his pediatrician, and he was diagnosed with walking pneumonia. He was given a five-day course of antibiotics, and I was told that they would stay active in his blood for several days after he finished the course. We were instructed to come back for a check in a couple of weeks.
We returned to the pediatrician on July second. Tristan’s lungs were declared pneumonia-free, good as new. I discussed with the doctor that Tristan had run a mild fever for the last two nights. I was concerned because it seemed to line up exactly with the timeframe for when the antibiotics were expected to clear from Tristan’s blood. The doctor was not worried about it, and asked that I keep in touch with him about any additional fevers. Over the next two weeks, as the low grade fevers blipped on and off a few days at a time, I exchanged messages three times with the doctor and had several phone calls with the office. Initially the doctor was dismissive, repeating that Tristan’s lungs had sounded great. By the third message, in the middle July, the doctor agreed with my suggestion that we do a TB test (I always think of TB because of our time in Indonesia, and it can explain SO many things), and he indicated that we should examine various possibilities. He did not, however, urge me to race in. Similarly, when I asked nurses very directly on the phone, “Does the doctor want me to come in?” the response was, “No, only if you want to.” For whatever reason, in my family it is deeply steeped that it’s totally lame to be a hypochondriac. We don’t go to the doctor unless we’re told to go to the doctor. “Only if you want to” is a clear indication of hypochondria. So, I didn’t zoom in to the clinic on that day.
Last Thursday, I took all the kids to our favorite swimming hole on a nearby river. It was a beautiful, hot day. Tomas and Phoebe played happily. I was proud of Phoebe, who, in a life vest, was throwing herself into the cool water. She’s always been afraid of water and doesn’t yet swim — this was a coup. But Tristan sat listlessly in the hot sand, halfheartedly pushing some little trucks around. I was worried — two weeks ago I had brought the kids to the river for the first time in the season and he had been sitting in the same place, and he had been just like this — tired and weird and not ok. On top of everything, two days before, he had suddenly begun to limp, complaining of a pain in his left knee that was not precipitated by an injury. Just that morning, after another fever the night before, I had taken the jump and made an appointment to take him to our clinic the next morning for a TB test and repeat lung check. I was glad we were going and worried that we hadn’t gone sooner.
Friday morning I took all three kids to the clinic. We saw a nurse, who examined Tristan. She ordered up the TB test, but she was concerned and wanted Tristan to see a doctor. Tristan’s regular pediatrician was away, so he would see another doctor who Phoebe and Tomas have both seen previously, a small, energetic, Vietnamese guy whose efficiency I’ve admired on those visits. We were told to come back after lunch, and I took the kids across the street to a sushi place. Tomas was in heaven and ate three or four different kinds of rolls. Phoebe ate white rice with great joy. Tristan ate edamame. The kids loved the chopsticks the restaurant staff had prepared for them by rubber-banding a wedge of paper between one end. I have the chopsticks stood up like figurines on a counter in our hospital room. They seem important. The lunch was fun, but I had a bad feeling.
The doctor was immediately alarmed by the combination of low fevers, leg pain, and Tristan’s paleness and number of bruises. He ordered blood work and sent us to a hospital imaging center to have Tristan’s leg x-rayed from hip to toe. I dropped Tomas and Phoebe with their noni (Gary’s mom) who lives near the hospital, and took Tristan for the x-rays. I also called the doctor’s office back to ask when the results of the blood test and x-rays would be available. I was concerned when they said Monday — the whole weekend to get through.
Saturday morning I took the kids to their gym, where Phoebe had a gymnastics class and Tristan and I had a Mommy-and-me class. Tomas messed around on some of the gym mats. Tristan happily participated in the stretches, but when it was time to move around, he wanted only to be held and had little interest in balance beams and the trampoline. We left early, as soon as Phoebe’s class was done.
At the gym, I had received a voicemail from the doctor’s office and was asked to call back, then told the doctor would call me back again and asked to keep my phone on me. I was scared.
We loaded into the car and headed to the next thing, Tomas’ baseball practice with a local competitive team. I wasn’t sure where the fields were and we were early, so I was aimlessly driving a highway with dairy farms on either side. Tomas didn’t want to go to the practice, and I was trying to cajole him into going to this one, then deciding later if he wanted to join the team or not. I pulled over to take a call from the doctor we had seen the day before.
He reported that there was good news and bad news. Tristan’s leg looked fine. His blood did not. There was evidence of inflammation and infection. His platelets and hemoglobin were critically low. He told us to go the the ER. I begged him to call them first. He promised he would.
On the fifteen-minute drive to the hospital, I called Gary’s mother and asked her to meet me there to get the kids. I tried and failed to get Gary, and called a neighbor to go find him where he was fixing fences in a pasture and send him to the ER with a bag for Tristan.
At the ER, we were expected and immediately ushered into a room. It was about noon. The pediatrician had said to expect a complete repeat of the blood tests, which was done in the first few hours.
It wasn’t long before a flurry of things happened, I can’t remember in what order. Tristan was given an IV needle. An ER doctor with the bedside manner of a cold, wet rock sat down and spilled out words like critically low platelets and possible leukemia. Another time the same doc popped her head into the room and asked how much I weigh. I turned to Gary and told him that meant we were to be airlifted to San Francisco, and I asked him to go home to pack me a bag, which I stupidly hadn’t done when I asked him to bring things for Tristan. I had simply thought he might be hospitalized in town, and I would be able to go home for my things. Gary’s sister Tina helped make a quick list, and Gary dashed out to make the half hour drive home, pack, and get back. Indeed, it wasn’t long before I was officially informed that we would be evacuated to UCSF. Someone mentioned the need for a bone marrow biopsy that had to be done there.
Had we been choppered out at the original estimated time, it would have been close for Gary, but plans changed and he made it back with a bag for me. The helicopter turned into a fixed wing airplane, allegedly because the chopper is slower and must be refueled in Ukiah. Tomas and Phoebe came back again with their noni and hugged their brother goodbye. The kids’ cousin Olivia came. Tina stayed with us. Soon after, Gary left to pick the kids up and head home. (Unbelievably, we were expecting guests, old friends from grad school and their two boys. I urged Gary not to cancel the visit and to get home to meet them. It ended up being a good choice; over the next few days, they helped Gary enormously and made life seem pretty fun and normal for Tomas and Phoebe.)
It was after seven when a medevac team showed up. They were kind and soft spoken and well-organized. Tristan liked their uniforms, which bore some resemblance to firefighter uniforms. There was a flurry of paper-signing and a long process of strapping Tristan into a stretcher. I hated that part, I so wanted to hold him. Tristan was a bit disappointed to be cheated of the helicopter experience, but the ambulance to the airport and airplane were also exciting. He wanted to be held to fall asleep during the later part of the flight and it sucked to see him struggle against his belts, but I could keep my hand on his head the whole time.
At SFO we were loaded into the fanciest ambulance I have ever seen and whisked off to the UCSF Children’s Hospital. All day I had been in touch with my good friend Kinari, an MD living in San Francisco with whom I previously worked in Indonesia. It seems worthy of more than a little mention that Kinari once saved both my life and Gary’s, after we were t-boned by a bus in Jakarta, stuck in a classically terrible Indonesian hospital, and not being given the treatment we needed to make it out alive. Kinari and I touched base in the ambulance and she planned to meet me at the hospital.
We were taken to the Pediatric ICU, and there was another flurry of paperwork as the medevac guys signed off and handed us over to the hospital. Kinari arrived soon after we did and by some miracle was able to talk her way into the PICU. Tristan was caught up in a bunch of sweet, friendly nurses who set him up in a crib with an IV. I hated that I wasn’t holding him, but he was happy enough with the nurses. I don’t really remember how the time passed, but at some point I did get to hold Tristan and he nursed to sleep. Or maybe he just fell asleep. I put him in his crib. At another point, I think when he was already asleep, the attending Dr. Sabnis and a fellow Dr. Kumar showed up and introduced themselves. They would be our primary team. We sat to talk, and Kinari was there for that. It was only a few moments before they began to talk about leukemia. Any notions I had that we had been sent down for further testing before a diagnosis could be made quickly evaporated. They already knew, the wet rock doctor in the ER back home had known, and most likely the doctor who called me from my clinic in the morning had known.
Dr. Sabnis and Dr. Kumar were kind and respectful and explained things to me carefully without too much dumbing-down. (Kinari had wisely given them my credentials as a PhD in Biology, which I wouldn’t have done myself. It helped to get more information.) They told me they were sure of the diagnosis, and that more tests, including a bone marrow biopsy, to be administered on Monday, would determine what kind of leukemia Tristan has. They were willing to gamble that it is ALL, and they emphasized its curability. It was a godsend to have Kinari there. She asked the questions I was afraid to ask or too shocked to ask. It was a great model, and it helped make something click in me — I haven’t stopped asking questions since she showed me how to that night. In the span of that conversation, suddenly I was no longer living in Humboldt. I was living in San Francisco, at least a lot of the time. And my family was no longer living together in the same place. And the importance of being with Tristan was very clear.
The doctors left. After making me eat something, Kinari left too. The nurses insisted that Tristan had to remain sleeping in his crib and they made up a fold-out couch for me. It was a terrible night, between the beeping and the nurses coming to check Tristan and my fear for my little guy. I think it was that night that Tristan got his first transfusion. But I thought a lot, and it didn’t take me long to decide that we can do it. We can be here and there and Gary and the big kids can travel to see us and we can still be a family and get through the other end of this. We don’t have to give up our life at home, and we shouldn’t turn Tomas’ and Phoebe’s lives upside down. And Tristan should be able to go home whenever he can. I thought about the amazing alignment of factors that will make all of this possible. There are a hundred of them, but of great significance are the facts that my parents recently moved to Humboldt from the East and that my brother recently bought a multiunit building in San Francisco that he has been using for AirBnB, specifically to not get locked into longterm rentals.
At one point Tristan woke up and cried for me. I pulled down one side of the crib and climbed in to nurse him. I tried to go back to sleep on the couch but couldn’t, so I cranked the side of the crib down again and lay curled around my baby for a few hours. Eventually I climbed out again and actually slept a few hours in the early morning. I realized the importance of the training in terrible sleep I have received from Phoebe and Tristan — who needs sleep or a comfortable place to do it anyway? I don’t need much to function.
We were in the PICU for much of Sunday. I think I remember another conversation with the doctors, who thought we could move to the Hematology Oncology Unit later that day. I remember the nurses taking Tristan for a ride in a red wagon. (This hospital has red wagons all over. They seem to be the primary form of transport for kids, rather than wheelchairs.) I held Tristan a lot. Kinari visited again. A child specialist brought toys. Social workers came to offer their help in anything — housing, emotional support, anything. In the early afternoon, an ass of a doctor visited and informed me that we needn’t be taking up space in the ICU. I replied that we didn’t want to be there anyway. I mean really, did he think I had camped myself out there of my own free will? That said, he’s the only jerk I’ve met here so far.
The nurse laughed him off after he left and said we were welcome to stay until Tristan’s nap was over — he had fallen asleep while the doctor visited. (The doctor had seemed appalled that I nursed Tristan while he talked with me.) “Don’t listen to him. It’s the charge nurses who run this place,” the nurse said. I managed to sleep also.
Around 4:30 we were moved to Heme Onc. The nurse who met us said, “I understand you co-sleep,” and lost no time in replacing the awful crib with a bed. For Tristan the move was hard. We were told right away that we were in isolation to protect Tristan, but our window has a big view of a park on the floor below. Tristan was desperate to play in it, and desperate for a yellow plastic taxi in plain sight. The nurses brought him a different car and he was appeased for a while. We explored our room, our big tv and its movies, and the menu options. We had visits from lots of people — child specialists, the social workers, doctors, nurses. It’s a blur, but one thing is sure: they were all kind and patient and willing to talk as long I as wanted to.
That night was rough, as Tristan had a fever, which makes everyone very nervous. There was lots going on around us all night. But he was given antibiotics and the fever broke and that was his last one to date. That was Sunday night, our first on the Heme Onc unit, which we were told would be our home for a month.
Monday, July 20th
It was a long day. Tristan was fortunately able to get into the OR earlier than expected. He was not allowed to eat beforehand, so the scheduled 2pm time was not a good one. We were there at 10am for prepping. I was disappointed when I was told that Tristan’s good white blood cell count (neutrophils) was too low for him to receive a port — too high a risk of infection — so he would instead be getting a picc line. The prep went smoothly. For a long time we were accompanied by a child specialist who played with Tristan and used a Teddy bear and toys to demonstrate what he was about to undergo. I got to hold Tristan as he was sedated.
Kinari was waiting for me in our room when I went back, so was with me waiting for the call that I could come back to the OR. It was good to have her there. The time went quickly and I received a call that all went smoothly and soon after another call that I could come back to wait for Tristan to wake up. Kinari waited with me a while and then had to leave. Tristan slept a long time and woke up in a pretty good mood, then fell back asleep until we were back up in our room.
At 3pm two social workers, our main attending and fellow, a couple of oncologists, and I had a conference call with Gary in a conference room while a nurse and the child specialist played and painted with Tristan. The doctors gave us the final results of the marrow biopsy and spinal tap minus a last remaining test that was reported at the very end of the conversation and that was consistent with the others: Tristan has ALL, which, given everything we have learned and were experiencing over the last few days, is actually the best news we could have received. It has the highest rate of successful treatment. If you had to choose a leukemia, it would be the one to pick. Of note was that Tristan’s spinal tap showed no evidence of leukemia in his spinal fluid. We then discussed the long term treatment plan and the detailed plan for the next month. The short version is that we will be here in the hospital for 28 days, and then will go through several other phases of treatment that involve varying periods of time in the city as outpatients, or in the hospital, and time at home in Humboldt. We then discussed participation in a clinical trial. The trial is nothing alarming — there’s no locking in with it and the first month is the same no matter what. There are simply some differences in the frequency of treatment in the last and longest phase.
We played in our room all afternoon and Tristan ate almost a whole six inch pizza for dinner. We are watching Frozen on our gigantic tv right now and Tristan is playing with the night nurse’s superman flashlight. He’ll soon sleep. He has been given a light dose of morphine after saying his head hurt, typical after spinal tap. He’ll get his first dose of chemo tonight at ten.
At this point I don’t care that he didn’t get a port. We’ll manage.
Everyone here loves him. Everyone. He’s so fun and friendly and smart. Seriously, the staff can’t believe it. Tristan says his tubes and wires are a web and that he’s Spiderman.
Meanwhile, on the Humboldt homefront our friends are working on putting together an animal care team that can rotate when Gary comes here with the kids. In addition, our friend Lindsey is putting together a plan to have friends bring dinner twice a week, including on Sundays when Gary and kids are returning from their visits here. It’s an enormous relief not to have to worry about a plan for when our place is empty.
I feel very strongly that we can do this. Tomas and Phoebe can continue their lives in Humboldt and at their school and baseball and soccer, and they can still see their mom and little brother with regularity, albeit not every day. We are so fortunate to have Chris and Agi and Kinari here in SF and our amazing families and neighbors in Humboldt.
Tuesday, July 21st
Tristan is doing amazingly well.
Indeed, Monday was rough, with a million doctors and OR procedures. But yesterday we had great news: Tristan’s leukemia cells (lymphoblasts) dropped by 75% after his first chemo treatment Monday night. His neutrophils (good white blood cells) rose considerably. And he wasn’t nauseated at all, as evidenced by the volumes of food he consumed, which included multiple granola bars, a sizable pizza for lunch, spaghetti with meat sauce for dinner, string cheese, and pretzels. We did puzzles, read books, and watched movies on our cutting edge TV, which is the size of a banquet table. Tristan’s nap was three hours long, which was fabulous but for the fact that it went all the way through the hour we had scheduled for “neutropoenic” time in the playroom. Because Tristan’s neutrophils are low, we are in isolation and he cannot attend playgroups or use the playroom when others are there. We’ll try again tomorrow.
The staff here are so nice. I am incredibly happy with our attending MD Dr. Sabnis and his fellow Dr. Kumar, who are our main peeps. Dr. Sabnis helped me change Tristan’s diaper today as we chatted. That can’t be something most doctors at topnotch medical facilities do. Our oncology team is similarly warm and friendly, and it’s not lost on me that our lead oncology doctor, Dr. Dubois, is young, handsome, and shaven completely bald. There are also a bunch of nurses on our floor who keep their heads shaven, in solidarity with their patients, I’m assuming.
In addition to Tristan’s positive early response to treatment, I had some other good news when I asked Dr. Sabnis more about the longer treatment plan. It looks like as long as things go well this first month and continue to go well, Tristan and I will have opportunities to go home to Humboldt now and then even during this initial intensive six months. When we cannot leave San Francisco but can be treated as an outpatient, we can stay at Chris’ place. What an incredible relief and indescribably enormous help that is. Thank you Chris and Agi!
Wednesday, July 22nd
It was a great day. We had wonderful news in the morning when the gigantic oncology team filed into our room, one by one, like the trick of clowns loading into a VW bug. They were all smiles, happy to tell me that Tristan’s lymphoblasts are now 0.1% of what they were when we arrived. He is responding superbly to the treatment. His other numbers looked good again, with his neutrophils high enough to buy him some time outside…OUTSIDE!!! In the park that we can see on the floor below from our window! The park that has to rudely been teasing us since we moved from the ICU to the Hemo Onc ward.
Better yet, Tristan has shown ZERO nausea in response to the chemo delivered Monday night. He’s eating well, and is generally in good spirits.
After his nap, we read, watched movies, and had a bath with wipes and a wet washcloth for his hair. He was furious and performed a perfect tantrum over the bath. It’s the only thing he’s gone apeshit about so far. What a trooper.
Tonight he scored MAJOR points with the entire floor staff. I asked him, “Hey, how are you feeling? You seem like you’re doing pretty good?” He responded with a sigh, “Yeah. It’s cause all the nurses are so boootiful.” OMG. They love him.
Thursday, July 23rd
It was a doooood day, as Tristan would say.
Yesterday the oncology team came with their report around mid-morning. Tristan’s blasts are down by 100% — undetectable in his blood! Of course, they are still lurking here and there, and the data say the treatment must continue its full three-year course to ensure that we get all those little bastards. But the number was great news, as good as we could possibly hope for. Three days into treatment, and a 100% drop in the blasts. I have frequently cursed modern medicine for many good reasons, but here is one place it sure had succeeded. I’m so thankful for the many decades of good data out there and for the research that has gone into their treatment and made it so effective.
Tristan’s other numbers were good as well, though his neutrophils are still very low.
In the early afternoon, we had a visit from a case manager / discharge manager. DISCHARGE?? I was starting to get suspicious, in a good way. On Wednesday, too, we had had a visit from an outpatient services nurse who also mentioned that powerful, magical word. I sort of cut her off, saying she must be mistaken, we’re in for the long haul. But then, after the second visit with mention of discharge, I was onto them.
When our attending, Dr. Sabnis, stopped in to chat (and again to play with Tristan), I pressed him on it, explaining how my suspicions had arisen. He apologized and explained that they had to do it this way — the risks were too high to talk of anything but a full month in the hospital. Seeing as Tristan is doing so well, and as long has he is fever-free, we may well be released sooner. I asked him to offer a most optimistic time frame. This coming Tuesday (!!!!!) he said. So, folks, keep your fingers crossed. We may be at Chris’ house next week. Chris, start cooking now…
Tristan had a pretty short nap, and then we had playtime in isolation again in the playroom. Tristan loved it, but was very tired by the end.
In the afternoon we read and watched movies. He was cranky on and off and is showing some of the side effects of the steroids, which case some kid craziness.
In the evening Gary came with Tomas and Phoebe. As both of the guys are recovering from colds, I brought Phoebe up to the room to hang out for a while. She and Tristan sat on the bed and watched Tangled while they put together a Spiderman Lego. Phoebe was a superstar, and happily handed over to Tristan a stuffed dragon she had just been given for herself. It was utterly selfless and very sweet, how she did it.
Gary and the kids arrived soon after the rounds. Tomas and Gary were feeling 100%, so they came up with Phoebe to see Tristan. Both siblings LOVE our hospital room. Tomas can’t get over the monstrous tv set and the food that one can order on the screen with the clicker/nurse-caller. Phoebe loves the ride-in taxi and the toys that we have borrowed from the playroom. At one point Tristan and Phoebe squeezed into the taxi together and, trailed by “Walter”, our IV rig, they rolled around the room.
The kids were all doing great when we got to the room. Both parties — grandparents and Gary/kids — soon departed, my parents for their hotel and Gary and kids for the hospital’s Family Housing, an amazing, free, spotlessly clean communal living place for patients, especially oncology ones, and their families who. like us, live somewhere else.
All morning Tristan, who is a bit of a steroid monster right now, had been begging to go to the playroom. Over and over he had listed the people he wanted to join him there: Tomas, Phoebe, Oma, Nagypapa, Mommy, Daddy, Kim. He got his wish, and at 1pm, we ALL got to go to the playroom. All three kids were in heaven: Phoebe tucked into a new pack of playdough with a bin of playdough cutters and rollers and squishers. Tomas played board games. All three kids got into the pretend medical equipment. The grown-ups chatted.
After playtime, Nagypapa took Tomas off to the driving range and Oma took Phoebe to the aquarium.
Tristan and I napped while he got a second blood transfusion. As he slept, I watched the color return to his cheeks. When he woke, he was a chatterbox. He talked for forty minutes straight. About firemen mostly. He was passionate, and kept gesticulating and putting one hand to his heart when he had something particularly meaningful to say. “In my life, in my whole life…” he kept saying. Our nurse was rapt. It was quite possibly the cutest thing EVER. He was in SUCH good spirits that I quickly requested my own blood transfusion.
In the afternoon we read and watched movies. Tristan insisted on having chicken for dinner so that he can be a fireman. He ate well. (I neglected to mention that yesterday he ate nine sausages. This is not a nauseated kid.)
Today Tristan will get more platelets in preparation for Monday. Monday morning he will have another lumbar puncture, and Monday night he will have his second chemo treatment of vinchristine.
Sunday & Monday, July 26th & 27th
Keep your fingers crossed tonight…we’re getting out of here tomorrow if all stays well! Tristan is doing fabulously, and we’ve been told that he can move on to outpatient treatment. It’s been great to feel so safe here, in such good hands, but I began feeling stir crazy today.
Over the last few days, Tristan has really started to display the steroid effects we’d been warned about. Holy smokes. One moment he’s talking a mile a minute, with great joy, about firemen and how much he loves to eat sausages. The next moment he’s gone apeshit over the lack of sufficient sausages on his breakfast tray. I’ve been told this month is the worst. Later, when the steroids are not continuous, every day, the kids aren’t so bonkers. Let’s hope so.
Yesterday (Sunday) was busy in the morning, with a visit from Oma and Nagypapa as they headed out of town and another from Gary and the kids, also on their way back to Humboldt. We all hit the playroom again, and there was great joy when we were told Walter (our IV rig) needn’t tag along. It was nice to see Tristan moving around freely, but also hard to see how unsteady he is. He says his legs hurt.
After everyone left, Tristan and I had a quiet afternoon.
In the early evening, I went down to the lobby to meet a guy selling a great stroller on Craigslist. He just happens to live three blocks away and was willing to walk it over. (And today he texted to say that he and his wife want to help in any way they can, with a meal perhaps. What a good guy.) I’m hoping Tristan and I can use the stroller to take lots of walks at Ocean Beach, which is very near my brother’s apartment.
This morning (Monday) was rough. Tristan woke at seven and was not allowed to eat anything before his lumbar puncture scheduled for midday. He was miserable and furious. The steroids have made him monstrously hungry. For five hours he whined and periodically raged about sausages. He fell asleep just before the procedure, which was great because he was sedated without any trauma or tantrum. As soon as he was out, I dashed to the cafeteria to buy sausages, and was crushed to find that the breakfast counter had been replaced by pho soup. I cobbled together a large snack sufficient for a steroid freak and got back upstairs just in time to be told he was waking up.
We went back to our room and I laid out his horrifying meal: pirate booty, potato chips, and ranch dressing. I nervously waited for his reaction. It was a hit! Phew, I breathed a sigh of relief. He tucked in, obsessively dipping each piece of booty into the dressing. Gross.
All evening we joked with each other: Who stole my hair??? we asked each other over and over again. Tristan thought is was hilarious. So did I.
Wish us luck for being discharged tomorrow!