If you would've told me in the early part of November of 2016, that Donald Trump is about to be elected president and a month after he takes office my son will be diagnosed with leukemia and undergo 3 1/2 years of treatment that will end in the midst of a global pandemic and during a fourth week of protests against police killing of Black people, I probably wouldn't have believed you.
If you would've told me in mid-October of 2017 that, despite having spent 75 nights in the hospital over an eight-month stretch, my son would remember almost none of those nights by the time his chemo was done, I probably would've believed you even less. OK, maybe not less. Theo finished his cancer treatment on Monday. Anne took him to the hospital in the morning, like she's done so many times. The anesthesiologists did their thing. When he woke up a couple hours later, his final lumbar puncture was behind him and his port had been removed. For the first time since he was 4 1/2, there was no plastic in his chest, there were no needles on his calendar. Was it anxiety provoking knowing that every trip Theo and Anne (and occasionally I) made to the hospital over the past four months potentially exposed him and us to the coronavirus? Yeah, a little. But the doctors noticed something early on that made us feel a lot better about it. Because of the early shelter-in-place orders in California and the relatively low infection rate among kids, Children's Hospital was actually pretty quiet. There weren't many kids coming in with the seasonal flu, or broken arms and legs. There were fewer car accidents. We were hoping for a post-treatment party. My parents, brother and sister were hoping to be here for it. That can all wait. Like any of you who have had birthdays in the last few months, or anniversaries or graduations or a Bar or Bat Mitzvah or a canceled wedding or a canceled anything, you know how hard it is to celebrate right now. We can't be with our friends so it's not much fun. But it's also just so dark out there. I don't have to tell you that. You know what's not dark? Our goddamn doctors. I've raved about Theo's level of care since the beginning, and can never do it justice. This stuff is next level. I'm not going to suggest there are silver linings from the coronavirus because it's an unfathomable casualty number that's growing at an equally unfathomable rate. But it's about time we all see medical care providers for the heroes they are. At a time when the best thing I can do is stay home and work from my laptop, often in shorts and slippers from my bed, I see on the news hospitals around the country filled or filling up with people suffering from a new disease that has no cure. And every day people who are a hell of a lot smarter than I am spend countless hours coming up with ways to keep suffering patients alive. Hey doctors out there, you can never hear these words enough -- thank you! Like the rest of you, we have no idea where we go from here. Camps are mostly off. Vacations too. School will maybe, if we're lucky, be some hybrid of classroom work and Zoom-based torture. The NBA at Disney is a vanishing pipe dream. We have a kid who turns eight in a month and is appropriately volatile and annoying for his age, with a brother three years younger who owns a big beautiful smile and a bigger scarier scream. It's the weirdest moment of my life and, I'm guessing, yours too. So here's the thing. Theo is alive. He's cancer-free. He's done with treatment. And we get to keep him. If you're in need of a little piece of good news right now, I hope that helps. And if you need an excuse to raise a glass tonight, we're here for you. Cheers!
27 Comments
When your little kid gets diagnosed with cancer, you learn a lot of stuff, and quickly. There are suddenly experts everywhere, mostly of the medical variety, but not exclusively. Psychologists and child life coaches and chaplains and insurance specialists are there to offer advice, share some of the burden, offer up a hug and just provide some distractions. You also meet parents who are in shoes similar to yours. Through evening coffee breaks in the lounge, regular visits to the playroom and apologies to the family on the other side of the curtain for the late night bathroom trips, there's a certain bonding that takes place on the oncology floor. Along the way, your kid becomes friends with the kids of some those parents. The experts will tell you about all of those things. But here's what the experts don't tell you -- your kid will likely become friends with someone who eventually dies. As far as we've come with pediatric cancer (better than 80% survival rate), one in five or six or 10 won't make it. Last summer, Theo met a young boy at Okizu, a camp in the northeast part of California that's set up to help families effected by childhood cancer. It's a kid's outdoor paradise, from the swimming, fishing and boating to the ropes course and S'mores after dinner. Theo, Hugo, Anne and I attended one of the several family weekends they host each year. We stayed on bunk beds in a cabin almost in the woods. The second morning at the camp, on my way to the bathroom to brush my teeth, I saw Theo outside playing tetherball with a boy who had long reddish hair. He said his name was Leif. They'd apparently just met. It was a rough game. Theo and Leif somehow managed to turn tetherball into a contact sport. They became fast friends and were inseparable for the next two days, until it was time to head home.
Back in the East Bay, Theo and Leif hung out a couple times. Every parent knows the joyous feeling of watching their kid make a new friend, and this one felt a little extra special because of the bond that the parents speak about, though the kids pretty much never do. Theo and Leif met in September. Two months later, Leif received a crushing diagnosis. He had secondary leukemia. Pediatric leukemia of any sort is awful. We knew all about that, having been through well over a year of treatment (at that point) for Theo. But all along, once we got through the traumatic first 72 hours, Theo's prognosis for full recovery has been good. Secondary leukemia is a much different story. It's caused by the treatment for a previous and completely separate cancer. In Leif's case, the initial disease was Ewing's sarcoma from over five years earlier, when he was just 2. A side effect from the chemo for his Ewing's treatment was leukemia. It happens in a small, but material, number of cases. It's unimaginably cruel, and the odds of beating it are low. Kids' bodies are resilient but they have their limits. Leif was treated at Oakland Children's on the same floor where Theo spent what felt like so many nights in 2017. But Leif was there much longer, as the oncologists tried every cocktail of drugs available in an effort to beat the leukemia into remission for long enough to make a potential bone marrow transplant viable and give Leif a fighting chance. Leif died last week. Those of us following his parents' updates knew it was coming, but that awareness did nothing to soften the heartbreak. He was a special kid. Two cancers by age 7 is an impossible thing to get your head around. Yet, at least based on the videos we saw, he was full of life almost until the end. I don't have any comforting words to offer Leif's parents. Just hugs. Theo sort of understands what happened, but not entirely. Which makes him like the rest of us. Sometimes there really are no experts. It took us two years and a few days, but we finally made it back to the snow. For a combination of financial, practical and probably emotional reasons, we opted to avoid Tahoe on ski week and head to a quaint little resort called Dodge Ridge in the Stanislaus National Forest. Theo's first day of skiing was spent in a class. Is there any other way to do it? Hugo's first day was largely spent folded over like a limp noodle, with bribery as the only tool at our disposal. There weren't any classes for kids his age, or private instructors available. At least that's what they told us. Nevertheless we got through it. Anne and I alternated, with one of us watching over the limp noodle and the other shaking off the rust from many years away from the slopes. By day two, Theo was ready to hit the bunny hills and Hugo was ready to be less limp and ski between our legs. No doubt we were saved by the baby harness -- a backpack with a handle. Here's our last run, with Anne escorting Hugo, and Theo shredding the snowplow. Not bad for a first timer. (Ignore my finger creeping onto the screen.) Theo didn't remember much about our last trip to the mountains. We've shown him pictures of the cabin in South Lake Tahoe, and the videos we took of him sledding and playing in the snow. We didn't have any videos of him tubing because he was too miserable that day to make it up the hill more than a couple times. We've told him plenty of stories about that weekend two years ago. He knows the significance, even if he doesn't really remember what we did. We're two-thirds of the way through treatment, assuming no setbacks. Other than his daily and weekly meds, Theo has monthly blood draws and IV chemo at the clinic. He has lumbar punctures every few months, and the periodic MRI to make sure the brain hemorrhage continues to heal OK. Some of that stuff gets in the way of school days, but that's about it. He's playing soccer, will soon start baseball and continues to love swimming and piano. He played Hannukah Oh Hannukah for his holiday recital and is working on Dayenu for his performance next month. It's almost like he's the grandson of a rabbi. Kindergarten is going well. His typical response over dinner, when I ask him about his day is, "I don't remember," which I believe makes him just like the typical six-year old. As is evident by the infrequency of my updates, the further out we get from Theo's diagnosis and the intense days of treatment, the less cancer is a part of our daily lives. Our stresses are the same as yours -- work, parenting, money, the weekend birthday party circuit, etc. Yet we're often reminded that we still have three years before Theo can be declared out of the woods, and even then there are all sorts of potential long-term side effects from chemo, radiation and ECMO. And then there's the blood clotting disorder. Those are all things we just learn to live with, and we know that, in general, statistics are on our side. So we remember to relax, smell the flowers, and, when possible, engage in snowball fights. For childhood leukemia, the 18-month mark is pretty significant. Recurrence in under that amount of time is considered early relapse and makes it much harder to find the right treatment plan to produce an ultimate cure. Of course, no relapse is safe so we've still got a long way to go. But it's been 18 months since Theo was diagnosed and, to use a sports analogy, we can only beat the teams on our schedule. Theo started kindergarten on Monday. That's reason for celebration and tears.. but more for celebration. However, if you'd seen his activity level this summer you'd only ask what took so long. We've just returned from a week away, mostly spent at a cabin on Lake of the Woods, the sixth biggest lake in Ontario (behind three of the Great Lakes, as well as Lake Ontario and Lake Nipigon), where Theo caught a bass about the size of his torso, kayaked, swam, drove a pontoon and threw about a million rocks, while entertaining Anne's aunt and uncle. He also visited his grandpa and Uncle Neil (Anne's brother) in Minnesota, before and after the seven-hour drive across the border. Three weeks earlier, he hiked in Big Sur, picked strawberries and spent hours at the Monterey Bay Aquarium, as part of the sixth annual Levy family trip (yes, all of us) to somewhere on or near the Pacific Coast. The rest of the summer was spent at camps, camps and more camps, for tennis, carpentry, science and a bunch of outdoor adventures, all while continuing his weekly piano lessons and starting t-ball. So yeah, not exactly a six-year old suffering from illness. As for treatment, we're down to monthly blood draws and hospital visits, with lumbar punctures every three months. Theo just learned to swallow pills with juice after first perfecting the apple sauce method, so home treatment has become quite routine and manageable. We have to remind ourselves how lucky we are and more frequently have to remember the importance of certain things that are unnatural for kids Theo's age -- like hygiene. The kids go to bed late, so it's hard to find time to write updates. But it's hard for another reason that's become clear to me recently. We know a lot of people -- way too many people -- who have been touched by cancer just in the time that Theo's been recovering. Family, friends, friends' parents and even friends' kids have been hit. So have our heroes. Some we've already lost, some are terminal now, while others are in remission, benefiting from the continuing advances in science and research. And then there are those who are deep in the fight. Cancer is one degree from all of us, and it's random. Anne's mom died from multiple myeloma a little over a decade ago. We all find ourselves all too frequently at a loss for words, able to only say some version of, "thinking of you." But the work to find a cure is inspiring. Some of the most groundbreaking medical research is happening in immunotherapy, which has the potential to revolutionize cancer treatment in the coming years and decades. There's never enough money, to be sure, but I'm amazed by the number of fundraisers and the level of energy behind them. (Five for the Fight is just one of my favorites.) In June, Anne and I got to attend the Leukemia & Lymphoma Society's Man & Woman of the Year gala in San Francisco. We dressed up all formal for the first time since.. our wedding? Next week we'll likely wear our more regular attire for pediatric cancer awareness night at the Oakland A's game, which of course will be followed by late-night fireworks. And later this year, Theo's story will be featured as part of UCSF Benioff Children's Hospitals' fundraising campaign, raising money for the hospitals and cancer research.
We're lucky to be in a position to tell it. We think often of our friends who are in the struggle. Before bed, Theo still periodically asks to look at pictures from when he was in the hospital. He asks about the breathing tube and the MRIs and his food selections. He also asks why his face was so chubby. We explain for the umpteenth time that steroids cause moon face. For him, it was so long ago. When you're six, 18 months is an eternity, right? But Anne and I still remember it like it was yesterday. Which is why there's so much joy in being able to get that pic that everyone wants -- the one of their kid on the first day of kindergarten. From the moment Theo discovered that there was a place called Legoland, all discussions about where we would go on our first post-diagnosis vacation came to an end. Fortunately for us, San Diego isn't the worst place to take two little kids. Theo has missed plenty of school days for treatments and a few others to nurse various colds, but this was the first time he got to play hooky to hop on an airplane and fly hundreds of miles away from Children's Hospital. It was a full five-day Theo indulgence, starting with a visit to the model railroad museum while we waited for check-in at our rental house. It included a trip to one of the world's greatest zoos, a day at a spectacular beach (Coronado, for those keeping score) and two full days at Legoland -- one at the water park and the other at the main theme park. The Padres weren't in town but I somehow managed to convince the family that we should check out a college game at San Diego State. I was excited to see the stadium where Stephen Strasburg broke all sorts of records. Nobody else cared. But, as it happened, we went on Aztecs vs. Cancer night, raising awareness for pediatric cancer. So that was cool. There was beer for the adults (specifically me), donuts for the kids (and the adults), and plenty of delicious coffee to help us deal with the kids' repeated demands to hear the Moana soundtrack on our drives between San Diego and Carlsbad. Mostly, it was just a normal joyous family vacation and a reminder of how far the little man has come in the past 14 months. Theo wanted to ride every roller coaster at Legoland. And I was happy to indulge him, mostly because our decision to go on a Monday meant that there were virtually no lines. I have no idea how families can do theme parks on weekends. Hugo wasn't a total nightmare, in general. Though he probably shouldn't be driving boats yet. Now we're back home. Theo is back in school. And I don't have a whole lot else by way of updates. That's a good thing. As much as I love you all, I kind of hope to keep it that way.
However, I will leave you with one final PSA. After a full day at Legoland with two little kids, don't suggest a dinner spot that's a half hour away. They won't make it more than about five minutes. Over Presidents' Day weekend last year, Theo was in a snowsuit in Tahoe. This year he was in shorts on the beaches of Sonoma. Last year he was struggling to breathe. This year he couldn't stop running. Last year he wasn't himself. This year he very much was. On Feb. 21, 2017, Anne took Theo to the hospital without the faintest idea of what she was about to learn. On Feb. 21, 2018, she took him to school. And then picked him up. And then they bought helium balloons. And then they made cupcakes. In the realm of Theo's treatment, the one-year mark doesn't mean a whole lot. But we're all here and seemingly healthy, And that's a cause for celebration. I've shared with you almost everything I've written about Theo over the course of the past year. It's been a blog tracking his progress, but it's also served as a journal. For me.
There's one thing I didn't post and I feel like now is the time. On Sunday, Sept. 17, the day after Theo's seizure, I sat bedside in the ICU and wrote him a letter. I reread it earlier today for the first time in months and had a tough time getting through it but was reminded again of this kid's remarkable courage. Eventually I'll be able to read it to him. 9.17.17 Dear Theo, It's hard for me to believe we're back here. You in bed with tubes coming out of your mouth and nose and veins, me sitting here with my computer open wondering how this all happened and what I can do for you. I knew when you were screaming yesterday morning after your brief and unusual nap on the couch that something wasn't right. Just like I knew when we were in Tahoe and you were screaming at me because you wanted to stop sledding on a beautiful snowy day in the mountains that something definitely wasn't right. There are so many things I want to tell you right now. Just like there were so many things I wanted to tell you in February, the day after the Tahoe trip, your first day in the hospital, when we discovered you have leukemia. I want to tell you how much I ache for you and how much I want you to stop aching. I want you to know how unfair this all is to you, but I'm not sure I want you to really understand that. Maybe it's better that you don't. For now. What you've been through in the past seven months -- it's absurd. The leukemia alone would've been too much. That alone would've made you 1 in 10,000, the opposite of winning the lottery. But your leukemia came with such aggression that you had to fight to stay alive just so you could start cancer treatment. You couldn't lie on your back because the tumor was putting too much pressure on your lungs for you to breathe. You couldn't be thoroughly diagnosed because sedating you for a biopsy was too risky. You had to wear a mask that you hated in order to breathe. Then you had to be hooked up to the ECMO (heart and lung machine) for three days, after which you still had a breathing tube and a feeding tube and lots of other tubes. Then, when all the tubes were gone, you still had to fight cancer. A battle that would take years. And to this point, through the hardest phases, you've done it without losing your joy, your sense of humor and your love of all the things you loved before you got sick. But that's not all. You have a genetic disorder called Factor V Leiden that causes you to form blood clots, and you had a lot of tubes in you -- including from ECMO -- that can cause clotting. So less than a week after you got home -- following 3 1/2 weeks in the hospital -- you had to go back in to treat clots in your leg, neck and lungs. In addition to another week in the hospital, you also had to start taking two Lovenox shots a day to prevent clotting. You hate needles. Now, you have a port in your chest, get blood drawn every week and still have regular hospital visits. With all of that, you've gotten to a point with your cancer treatment that you're just a few months from being able to travel and even start school. It's pretty amazing. We're so proud of you. We love being around you. We're so excited for you to get better and get back to being a kid. But here we are again. Back in the PICU. Wondering when you're going to get to wake up and what you're going to be like when you do. Yesterday, while we were at Neptune's, waiting for our brunch to come, you had a seizure. You and Hugo were sitting on either side of mom, coloring. I had run across the street to the laundromat to put my clothes in the dryer. In the few minutes that I was away, you lost control over your body. You told mom that your right foot wasn't working. You started shaking. Mom had someone at the restaurant call 911 for help. An ambulance came. So did a firetruck. You won't remember any of that. You and mom rode together to the hospital in the ambulance. I stayed back with Hugo to pick up the laundry, drop off the food from the farmers market and find Hugo a place to go. He fell asleep in the car on the way home. Then I dropped him off at Claire's and took him out in his car seat so he could keep sleeping. Hugo was going to have to wake up at Claire's house not knowing how or why he was there. You went to the emergency room, where they put a breathing tube in you and made sure you were stable. Just after I got to the hospital, they took you up for an MRI. The image showed a blood clot on the left side of your brain and some bleeding. Can you believe that? All those shots you've been taking to avoid clots and you got one anyway. And in the brain of all places. You spent your first night back asleep and have been that way most of time time since. It's really hard to see you like this. You've done so much work and you've established your routines and you know all the things you have to do to keep the cancer cells and blood clots away, and you do all this stuff that you hate doing. And yet here we are. Again. We don't know what to expect from here either. We have to wait for your brain to settle down a little bit before the doctors can consider taking the tube out and turning down the sedation. When you finally start to wake up, you're not going to be all of you. Your brain has been injured, and that means it's probably going to be hard for you to talk right away or maybe even for quite a while. You're likely to struggle moving your right arm and leg, because that's what happens when you injure the left side of your brain. You're too young to learn that. You're also too young to know about hemoglobin and platelet levels, yet you do. You're too young for a lot of things. The doctors say there's a long road ahead. We've heard that before, unfortunately. But this road will be different, because this is your brain. Your brain isn't like your heart or your lungs or your chest, the other places where you've been sick. Your brain controls everything about you. And when it gets damaged, other parts of your body forget how to work. They have to relearn. They have to be retrained. The good news is that little kids' brains can be fixed. They can be retrained. It takes work, sometimes a lot of work, years even. And then it still may not work totally the way it used to. This is the new reality that the doctors are preparing us for. We don't know any of it for sure though, because we don't know the extent of the injuries. We may not for a little while either. Right now, the doctors aren't certain you can breathe on your own. First things first, little man. Back to those things I want to tell you. You've taught me so many things. After all, I'd never been a dad before you came along. And being a dad is hard work, harder than anything else I've ever done. Your mom makes it infinitely easier. She's really really good at being a mom. That's one thing you've taught me. She's also a much better piano teacher than me. In part, that's because she's a teacher for a living, but there's much more to it. She's just good at it. You've taught me that there are a few really important things in life, and that those are the things I need to spend almost all of my time doing. When Hugo was born, those things became even clearer. You kids change so quickly. You learn things that change you every day. I don't want to miss those things, any of them if I can help it. Nothing is cuter than Hugo suddenly saying, "Shall we read a book?" or you deciding that "of course I can" is an essential response to so many questions. So I almost never travel without you. In Hugo's two years, I think I've maybe spent three nights away from the family. There are plenty of people who are great parents that travel a lot for work and for play on their own. Others can do it. I can't. You and Hugo have taught me that. You've taught me that the most gratifying feeling is your sense of accomplishment. I long for you to feel proud of yourself. It hurts when you don't. Unfortunately, you've taught me about immense and immeasurable pain, the type that many people feel but I never had. I'm feeling that pain right now, as I write these words. I'm crying on my keyboard. Theo, you deserve the best this world has to offer. I know you deserve that. There's a lot I don't know right now. But that I know. I took the boys out to eat Thursday night and somehow managed to get a photo with Hugo showing off his dad's Texas pride. Anne is sick and was in desperate need of a couple hours of quiet time. She caught what one of the boys had -- we're not sure which one. Hugo is just getting over the flu. Theo had something else, probably just a bad cold. When his temperature rises above 100.4 degrees, we have to take him to the ER so they can test his blood and give him a 24-hour antibiotic through his port. We've had to do that twice since Saturday, but he's good now. Hugo almost needed his own trip to the ER, but he's good now too after one visit to the pediatrician.
So I got my night out, with the boys on the mend, though each is still saddled with a runny nose and a cough. Because they're kids. And it's winter. And the flu vaccine is hardly working this year. We went to Habit Burger, a fast casual joint. After our food arrived, a boy a couple years older than Theo came up to him and asked why he doesn't have any hair. I think his exact question was, "Why don't you have anything on your head?" I played dumb and asked what he meant. And he responded, "hair." Theo, unfazed but tired and not particularly interested, said "because.. I was in the hospital." I wasn't sure if the kid could really understand him so I said, "because he was sick." The boy said, "oh OK," and walked back to his table. A couple minutes later, I asked Theo if the question bothered him and he said not really. I asked him if the kids at his school ever bring it up. He said sometimes. I started to ask another question, and he smiled and told me he doesn't feel like talking about it. It was an unremarkable statement. He tells me this all the time about all sorts of things that have nothing to do with anything important. He's just finishing up his fourth week at school and has already missed several days either for treatment or because he was sick. But he seems to really enjoy it and isn't bothered by the fact that all the other kids have been in the class for several months and all know each other. If any of his classmates have made him feel uncomfortable about his lack of hair, or anything else, Theo hasn't brought it up. Anne is planning to spend a day with his class in the coming weeks to explain why Theo is bald, and she's working with the school psychologist to do it in a way the kids can hopefully grasp. Anne has spent almost her whole career in elementary education, so this is kind of in her wheelhouse. I say all this because one of the fascinating things about this whole experience -- as painful as it's been -- is watching little kids try to process something that's just way too much for their brains to understand. Cancer is hard enough. But that's not what causes hair loss. So try explaining chemo. But chemo isn't why Theo doesn't have hair right now. His hair came back after his intensive treatment. It fell out again after radiation. Try explaining that. And then try explaining that you're not sure if you even needed it, but it's part of your acute lymphoblastic leukemia protocol. Forget about the complications that come with having Factor V Leiden. So how do you tell a 7 (or 8?) year old, who comes over for half a minute, why you don't have any hair? You say, "because.. I was in the hospital." And then you go back to eating your chicken nuggets. I'm not really one for new year's resolutions. I've never been good at coming up with them, save the couple times I ended a year in really awful shape and vowed to start exercising for real when the calendar turned. Heading into 2018, I don't have any great ones either. But I'm not sweating it. On Saturday, the four of us went for a day out to a great part of Oakland where we never go, had brunch at a place where we'd never eaten and then went to a beautiful park in the hills. The kids ran around the playground non-stop for well over an hour. When we got home, Theo and I played basketball and rode scooters outside for a while longer until neither of us could stand for another minute. After that, we fell asleep together on the couch for a truly epic nap -- one of those winter weekend naps where you wake up and it's dark outside and inside and nothing makes sense. It was cozy awesomeness. I don't have any real resolutions for the new year, but I could use a whole lot more of that. And some travel. None of us have gotten on an airplane since Theo got sick. Well, except for once, a few weeks ago. We went to the San Francisco airport for what United Airlines calls a fantasy flight. It's an annual event for special needs and sick kids at a bunch of airports around the country. They deck an entire gate out with holiday decorations and festivities and appearances by famous athletes and local sports mascots. Here's Theo with former Warriors center Adonal Foyle. And here's Theo and Hugo doing something Christmasy, I guess. Eventually we got on a plane, destination North Pole. Weirdly, we landed back at SFO a half hour later.
It's the only time any of us have been on a plane since Theo's diagnosis. For most of the year, we haven't been able to travel because he's had such frequent hospital visits that it hasn't been practical. But there's also the blood clotting thing that makes air travel risky. And there's the bigger thing of just being afraid to be far away from our doctors. A lot of that stuff will be with us for a while and we'll just have to live with it. But with the mild inconvenience of packing a bunch of meds and making sure Theo takes regular walks up the aisles, we can travel again. And we certainly plan to in 2018. Theo is also starting school, of sorts. He's entering a part-time TK (transitional kindergarten) program next week in Alameda. He seems ready. He did a week-long winter camp in Berkeley earlier this month and made it through the full day schedule, except for one day when we had to keep him home with a fever. One thing is certain -- we're all ready to say adios to 2017. To state the stupidly obvious, it was a year that none of us will ever forget. The surreal became the norm. Our dark past hijacked our present. And catastrophes were so frequent that we could never grieve over just one crisis. Theo, Hugo, Anne and I wish you all the happiest of new years. Kiss 2017 off in style, and my only advice for 2018 is something I learned this weekend: take some epic naps with the people you love. And then there are days when, despite all of it, you get to experience life as a five-year-old. There's the Saturday morning visit to the farmers market with a walk through a construction site on the way. There's a trip to Train Town in Sonoma, because wine country wasn't about to let the wild fires win and because -- on this Saturday -- only one person in the family was calling the shots. (hint: he's on the left) There's the realization that after all the year's ups and downs, you still want to ride the roller coaster and you're willing to wait as long as it takes for the operator to show up. There's a trip to the winery because certain things have to happen when you go to wine country and because certain wineries have tractors... for kids. And because after two weeks of radiation, it doesn't matter that you're supposed to be tired and you're supposed to feel nauseous and your hair is supposed to be falling out and your body is supposed to be recovering.
It's because you're five years old and you're done wearing a goddamn mask. Just as Theo's hair is starting to grow back, he's about to lose it again, or most of it at least. Radiation starts Monday morning. He'll go for five days, get the weekend off, and do it again next Monday through Friday. I think we're all decidedly less nervous about it than we were last week at this time. We went in on Wednesday for a long consultation, with the primary purpose being to get Theo as comfortable as possible about the whole process. It's at a different hospital because Children's doesn't have a radiation facility, so it's a whole new group of doctors, nurses and techs. Side effects aside, the concerning part is that Theo has to be completely still on the table during the five-minute procedure. He's proven he can do that for CT scans, but for those we're allowed to be in the room, holding his hand. For radiation, we have to sit in the neighboring room and can only communicate with him through an intercom. Also, Theo will have to wear this Freddy Kruger like mask. They fit him for hit on Wednesday and Theo handled it like a champ. He seems to have a pretty decent grip on what's about to happen and, at least for now, is quite calm about it. In general, Theo is in a pretty good place right now. He gets a few weeks off the steroid that has the biggest effect on his mood, though he's still on several other meds. His counts have been stable of late, so he's gotten to see his friends quite a bit.
Thanksgiving is always a great weekend for us. We go to San Jose for dinner, festivities and a slumber party with Anne's cousins. We then get some A+ lounging in on Friday before making our way back up to the East Bay. The kids both love it there and can't get enough of their cousins, Suzanne and Barbara. Fortunately I'm the only one who cares about football, even after spending the last two decades trying to disown the Cowboys. We went to the California Academy of Sciences on Saturday. I'm not really sure what Theo liked the most. I thought it would be the earthquake simulation house, where you get a little glimpse of what the 1906 and 1989 quakes felt like, but he was underwhelmed. He was quite entertained in the tropical rain forest, though, and even more so in the aquarium. It was a surprisingly peaceful experience. Watching Theo watch the jellyfish gave me the feeling of a more pleasurable form of radiation. And reminded me, again, to be so very thankful. |
Ari and AnneUpdates on how Theo (our treasure) is progressing |