Broadly speaking, there are three treatment phases for pediatric acute lymphoblastic leukemia: induction, consolidation and maintenance. Induction is that first crazy month during which the objective is to kill 99.9 percent of the leukemia cells and beat the disease into remission. Consolidation occurs over the next number of months and, depending on a patient's specific characteristics, includes a combination of lumbar punctures, IV chemotherapies and oral meds with frequent hospital visits. Then comes maintenance, a multi-year phase designed to eliminate the last few hiding cells and do everything possible to keep the body from relapsing. Almost all of that happens from home. This week, Theo entered maintenance. We're in it for two-plus years. It's a better place to be, for sure. The number of hospital visits will soon drop dramatically. And, more importantly, the further out we get from diagnosis, the better the prognosis. But there's also the ongoing reality that we won't be out of the woods for a long time. It's Theo, so of course entering maintenance is more complicated. Later this month, he'll be starting radiation sessions -- 10 days, about 15 minutes each. Nobody is looking forward to it, both because the treatment itself doesn't sound like fun and because it introduces a whole new set of potential side effects. So yeah, our stress level remains quite high. Physically, Theo is doing great. He was out of his walking splints in two weeks. His energy level is high. He's riding his bike and chasing his brother. However, because of the cocktail of drugs he's on and (we think) because he's five, he's quite volatile emotionally. The steroid that he just started taking this week doesn't sit well with him at all and even puts him into an occasional rage. We're getting closer to some of life's more normal things. We can start to travel again soon and Theo is on course to start school in the fall. He began religious school at the Temple this week, and we're hoping he can go to a weeklong winter camp next month. We should soon be able to get him back into piano, swimming and eventually soccer, if he so desires.
Nobody said it was going to be easy. It's maintenance.
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Tuesday night was our 32nd straight in the hospital. Wednesday was our 33rd day. I wasn't certain until around lunchtime that there wouldn't be a 33rd night. Theo's cabin fever in the past week had become obvious even to the nurses. Once we told him we were going home, there was no turning back. It takes a lot of work to get out of the hospital after a long stay, particularly one that involves necessary home care. Getting the meds straight, the schedule set and the doctors on the same page takes a while. Getting insurance to approve things like physical therapy at home sometimes seems impossible. It still hasn't happened. But we got to leave anyway. It was a pretty festive day last day. There was a Halloween party on the 5th floor. There were lots of made-for-selfie costumes floating around. There was a fun-for-the-whole-family physical therapy session. And finally, after some celebratory music therapy, we got our discharge papers. Theo got deaccessed and joyfully went to the bathroom, detached from his IV pole. He was so unaccustomed to that feeling that he tried to grab the pole on our way out. Just after 5 p.m., we got to take that glorious walk down the hallway, through the double doors and into the elevator. (Please excuse the camera work.) When we got home, before Theo even made it inside, he took a little ride. Think he was ready? As we've learned, getting home is one thing. Staying home is something else entirely. By my count, we've spent 75 nights in the hospital this year. Here's to not having a 76th.
We're more than 40 miles from the nearest wildfire, but you wouldn't know it by the thick haze that sits over San Francisco and Oakland during parts of the day, or the campfire smell that perpetually surrounds us. Depending on which way the wind is blowing, that odor is more than noticeable on the 5th floor of Children's Hospital. When it gets too pungent, nurses pump in more pleasant aromas for us. Given the air quality outside, the hospital isn't the worst place to be right now. But it's sure depressing looking out the window every morning and evening fully aware of why the sky is lit by that eerie orange tint. Every time I sit to write something about Theo, there's some new unfathomable crisis taking place. This one hits way too close to home. Anne and I got married in Sonoma County, and we go there at least quarterly to pick up wine and to take the kids to Train Town. We've also had so many blissful weekends in various Napa and Sonoma cities. It's truly one of the most spectacular areas in the country. For us, it's terribly heartbreaking. But some of our friends live or have family very near some of the fire zones and are feeling the effects much more acutely. You've probably already donated recently to Houston, Florida, the Virgin Islands, Puerto Rico and Las Vegas, but if you're overcome by the same sense of helplessness that I am and you're looking for places to send a few bucks, there's no shortage of charities, GoFundMe campaigns and local credit unions that are providing much needed (though not nearly enough) relief. Up here in our little bubble, we're finally able to see the finish line, at least for inpatient treatment. Theo had an MRI on Thursday, and the oncologists and neurologists are all confident now that all is plenty stable for us to go home. The only thing Theo is still noticeably struggling with is walking, but I think we all agree that he'll be better off when he's out of here and not hooked up to an IV pole. He's just finished a four-day chemo treatment, so now the only reason we're here is for a couple hours of rehab a day. We did get a fun visit this week from five-time Olympic gold medalist Nathan Adrian, who was part of the 2016 relay team, along with a guy named Michael Phelps, that won gold in Rio. Of course, Theo doesn't know Nathan Adrian from Mark Spitz, but he was still impressed. Absent any significant setbacks we should be home by the middle of next week. I think Theo is most excited to reunite with his little brother. Aside from Facetime, they haven't seen each other in almost a month. I sometimes wonder if they'll still recognize each other. Hugo is now practically reciting Shakespeare.
I'm mostly excited for Theo just to be able to do kids stuff again. He takes all this madness ridiculously in stride, with the assistance of some large and time-consuming Lego sets. But he deserves some fun, a lot of fun. Like, Train Town fun. Come on Sonoma. We need you. Our boy is back!
Since the weekend, Theo has been making impressive progress daily. Evcn the neurologists are now speaking optimistically about his chance for almost, if not entirely, full recovery. If you didn't know any better, you might not think anything was wrong. There are still big improvements to be made with his language and sentence construction. He frequently struggles to come up with words and often falls back on nonsensical sounds when the vocabulary isn't there. He's also pretty early in his physical rehab and not walking much yet. But these are things that were inevitable after what he went through. The general sense we get is that he's well ahead of schedule. We've got a lot to accomplish before going home. In addition to the various therapies, we have to get Theo's drug levels right. Even then, he'll be at heightened risk of additional clots and future seizures, but everyone obviously wants to minimize those risks as much as possible and is willing to patiently wait for the right drug cocktail to emerge. Plus, we have to get his chemo treatments back on track. He's scheduled to restart them on Friday. For now, Theo is back to building Legos, singing his favorite songs and engaging with books. On Wednesday, he played drums during music therapy, spent an hour coloring and painting and even wheeled himself around in his (temporary!) wheelchair. As always, thanks to all our peeps who do such thoughtful things for us with such regularity, and for all the High Holidays Misheberachs. And thank you, Amy, for these fabulous buttons! An X-ray, echocardiogram and CT scan all before breakfast. It's nobody's favorite way to start a day. But that's how we kicked off Friday. Theo's oxygen levels were dropping Thursday night. Given the little man's history, the doctors didn't want to take any chances. They put the scanning wheels in motion. From 7 a.m. until close to 10, it was all imaging all the time. In general things look fine, but there is the issue of a fresh blood clot towards the bottom of his right lung. Another bummer. Relative to everything else that's going on, it's not a humongous deal. They were upping his Lovenox levels anyway now that the bleeding has stabilized, so the treatment dosage he's on should be enough to handle this clot. He had another ultrasound Friday night, this time of his arms, legs and stomach, to see if the clot in his lung may have broken off from somewhere else. Results were negative. Just the one, as far as we can tell. Regardless, an ongoing concern is how we get these clots to stop forming. This will surely be a big topic with the hemotologists and oncologists over the weekend and into next week. Aside from that, we're seeing decent progress every day. While Theo is still sleeping a lot and tires easily, he's definitely more alert when he's awake. He's adjusting to his anticonvulsants and the doctors are planning to lower the dose on one of those drugs in the next day or so. Theo seems to listen pretty well and is quicker to shake or nod his head after a question. He's talking more, but his speech is still quite limited. I get really excited when he breaks out a complete sentence. It's happening more. He's eating pretty well so can hopefully get the feeding tube removed in the next week. He hates that thing -- takes it out at least every other day. He's spending several hours a day in therapy -- physical, speech and occupational. It's frustrating. It's hard not having all of your kid. Really hard. It doesn't feel right. It's a grind. But Theo continues to impress everyone with his spirit and his toughness. I don't know how he does it. Relative to the PICU, life really is much better in the oncology unit. We have a big room to ourselves, it's pretty peaceful and the doctors and nurses love Theo. I mean, they love all their patients, including Theo. Plus, we're on the fifth floor with a big window looking out on a city that doesn't totally suck. To our friends and family in the tribe, have an easy and restful fast.
Anne is reading a book called, "My Stroke of Insight," written by a brain scientist named Jill Bolte Taylor, who had a stroke at age 37. She also gave a famous TED talk about her experience, which she describes as this out-of-body adventure. Taylor's brain hemorrhage was in the left hemisphere, the quantitative and practical side. Having lost control of that side of her brain, she was left to view the world from her right side. She was peaceful and without worry and in a state of nirvana. I'm oversimplifying. I haven't read the book, but I watched the TED talk and, while running over the weekend, I listened to a podcast with Taylor from a few years back. In it, she says that even after fully recovering -- a process that took eight years -- she knows how to get back to that blissful place on occasion. She calls it "the beach in your mind." Taylor's stroke and Theo's seizure are extremely different. But they both involve a hemorrhage in the left hemisphere, so perhaps there are important similarities. Theo's been doing this strange thing the last couple days. He's been smiling and giggling like crazy. He's generally a happy kid, but it's kind of out of control. The doctors don't really know how to explain it. Likely it's some combination of the meds and the delirium. But I do wonder if he's in some wacky peaceful carefree state, free of the stresses of the left hemisphere. He might be at the beach. Whatever the cause, nobody is complaining. We know he's not in pain. He's infrequently irritated. This could all change dramatically tomorrow or the next day. But for now, it seems like an alright place to be. Meanwhile, on our planet, Theo is doing better. He's moving both arms and legs quite well and with purpose. He had productive physical and speech therapy sessions on Monday. He was able to put the toy turtles in the bucket with limited assistance and he was able to sit up by himself for a few minutes. He's doing a decent amount of talking, albeit without making a ton of sense, usually. Medically, things are also looking increasingly stable. The latest MRI showed no change in bleeding and just a slight and not unexpected increase in swelling. Some of Theo's veins have opened faster than the doctors anticipated, so I believe that means blood and oxygen have a better shot of getting to the right places.
In the next two to three days, he should be transitioning from the heparin drip back to Lovenox and we'll hopefully get to move upstairs to oncology -- where the rooms have windows and things are generally a little less crazy. My parents are back in town now after a brief trip east for a wedding over the weekend. So I'm going to experiment with trying to work at the hospital, or nearby, as much as I can. I don't want to be far away from Theo. I want to see the subtleties of his daily improvements. I suppose I should also be there when he comes back from the beach. Neurologists, more than any medical specialists I've encountered, live in the indefinite. The brain is so unpredictable and the range of possible outcomes so vast that it's virtually impossible to get a prediction for how much recovery is likely, how long it will take and what we should anticipate.
Instead, what we get are possibilities, and level of recovery relative to expectations. For example, it's possible that Theo can fully recovery, the neurologists say. And, right now, his responsiveness is better than they would've expected. This could be encouraging. But, truthfully, it's hard for us to feel that way. What we want to hear is that Theo will almost surely recover entirely and that we'll start to see significant improvements every day. That's just not reality. The injury to Theo's brain was significant. The size of the clot, amount of bleeding and level of swelling are all very concerning. However, the bleeding appears to be under control, based on the latest quick scan on Friday (we'll get a full scan on Monday). The clot seems to be stabilizing and his brain is calming. Medically, the big concern remains his heparin levels -- reducing the clot over time without spurring more bleeding. "Kids' brains are plastic," we keep hearing from the doctors. We know they have the potential of growing through something like this. Potential. Theo is sleeping most of the time. Dr. Agrawal, the oncologist working the weekend shift, said he wouldn't be surprised if Theo spends 20 hours a day asleep right now. He needs the rest and his body is also adjusting to all the anti-seizure medications. He said that we should see small improvements each day. That could be better movement of his arms, legs, extremities. It could be better comprehension and communication. He doesn't expect there to be a whole lot of words for a while. On Friday, Theo told us, in a fairly complete sentence, that he needed to go to the bathroom. We were pretty shocked. He's been offering up some nice smiles and even some laughs. Not many sentences. There's no getting around it -- we're in for a long haul on this one. The best guess we've been given as to how long we'll be in the hospital is one to two months, and that came from Theo's principal oncologist, Dr. Golden. Most of that time will be focused on Theo regaining strength and relearning to drink and eat. There's a lot of work to do. Hopefully we can get him up to oncology by early to mid next week, if he can go off the heparin drip and back to Lovenox shots. We still have stressful decisions to make going forward about his leukemia treatment. The oncologists have said that delaying procedures for a few weeks isn't a problem and is to be expected over the treatment course. Radiation will be the big consideration. Dr. Agrawal said that he thinks with all that Theo is going through now, the risks of radiation -- cognitive challenges, secondary tumors -- may exceed the reward -- limiting the likelihood of recurrence of something that he may have never had. Anne and I both experience these dramatic waves of sadness. They're familiar but different. Different because it's the brain. And because this kid has been through enough already. But we get strength from knowing that Theo is resilient. He still has youthful naivete on his side. He has plasticity on his side. On Theo's first Rosh Hashanah -- five years ago -- he was three months old. I don't remember much about it other than this picture. I imagine I went to evening and / or morning services and left early to steal a few minutes of extra sleep and hang out with my growing family.
Rosh Hashanah, our new year, is always meaningful. Even for those of us who don't spend the average Shabbat at temple, there's something joyous about Rosh Hashanah. It's a time for community, for reflection and for healing. And I think we can all agree that the year 5777 deserves a big fat wet kiss goodbye and that 5778 needs to bring a whole hell of a lot of healing. Some of us feel it acutely in our home, or even bedroom. But every one I know feels it intensely in more than one way. The amount of devastation our country, continent and hemisphere have experienced in just the past month is unimaginable. And it just goes on and on, from Houston to Florida to Mexico to the Virgin Islands to Puerto Rico and so many islands in between, not to mention the catastrophic fires up and down the west coast. It's impossible to get your head around it all, even if you try to ignore the man-made disaster that's taken over Washington. None of this changes because the Jewish calendar turns over. It's impossible to say if we're even through the worst of it. But for a short period of time, as 5778 dawns, I'm not watching the news or maniacally scrolling through Twitter. I'm sitting next to my half-sleeping son in the hospital and thinking about all of the doctors and nurses who have worked double shifts to keep him alive and give him the best possible shot at recovering. About the hundreds of people across the country that have lifted his spirits and comforted us. About all our dear friends who have handled our chores and delivered such delicious food. About Mary and Dave, who have taken in Hugo for I have no idea how many nights and reminded us to breathe deeply and enjoy a nice glass of wine. About my parents, who have worn out Southwest Airlines customer support with the number of trips they've rescheduled but more importantly with the joy they bring their grandkids every time they walk in the door. About my wife who -- literally -- does IT ALL. And about Theo, who inspires me every day with his resilience and reminds me to enjoy the process. Because that's all there is. Theo is off the ventilator now. His breathing tube is out. The bleeding appears to have stopped. The healing continues. L'shanah Tovah, may the new year be a good year. Theo's asleep. He's mostly been asleep for the past 3 1/2 days since we arrived, or really since the seizure. Rather than showing you a picture in his current state, here he is a year ago at this time in Plumas National Forest, on our way home from a long weekend in Graegle, north of Tahoe. It was a memorable trip. It involved a train museum.
Back to the present, it's been a long few days of waiting. There are two big things happening. First, we're letting Theo's brain calm down from the seizure. The electroencephalogram (EEG) was hooked up until this morning so the neurologists could track the electrical impulses in his brain and recognize any seizure-like events. By Tuesday morning, they were pretty confident that the seizing had ended even though there was still some abnormal activity. The other big thing is that we're monitoring the clot and bleeding through imaging. Theo had an MRI Tuesday morning that showed the clot breaking up a bit but the hemorrhage also expanding slightly. This brings us back to our core problem: it's hard to treat clotting and bleeding simultaneously. However, the doctors are encouraged by Theo's medical condition and his responses and reflexes. His hemoglobin levels have remained high, suggesting that he's not losing an abnormal amount of blood. And he's offering the kinds of reactions the doctors want when they tell him to open his eyes and wiggle his fingers. He's also lifting his legs up when they change his diaper and he's showing agitation from pokes and prods. He'll have another MRI Wednesday afternoon that we hope will show the bleeding has stabilized. At that point, we can work towards lowering the sedation and getting the breathing tube out. And then we can start to see the extent of the injury. It's hard to determine any of that at the moment. When he wakes up, for those few minutes at a time, we don't really want him up for long because he's so agitated by the breathing tube that he can't get comfortable. We know all these things from his initial hospital stay in February. Theo is a crazy complicated medical case. The leukemia was totally random. The clotting disorder is genetic. That combination is volatile as we've come to learn, particularly when he's on a couple specific chemo treatments with clotting tendencies. There are lots of other things we're eventually going to have to consider. Like whether he should go through with the radiation treatment that's scheduled for a couple months from now. If you remember, the reason he's supposed to get radiation is because they weren't initially able to perform a lumbar puncture to determine if he had cancer cells in his spinal fluid. So to be conservative, they've been assuming he did and would need radiation. There could be added risks to that procedure given what he's now going through neurologically. These are all conversations for a later date. For now, we need the bleeding to stop and for this little dude to start waking up. Anyhow, we miss him. I'm sitting bedside next to Theo. It's Saturday night and we're once again not where we expected to be. I'm typing on my phone.
Theo had a seizure Saturday afternoon. We'd just finished our weekly trek to the farmers market and been seated at Neptune's, a new brunch spot in Alameda. After ordering I ran across the street to the laundromat -- the dryer in our building isn't working -- and minutes later a waitress rushed in to deliver the news. By the time I got back to the table, Theo's shaking had slowed. Anne was doing the amazing work she always does and Hugo was sitting silently surrounded by a crowd. 911 had already been dialed and the paramedics arrived and took over in a few short minutes. Anne said that just before he started seizing Theo said his right foot wasn't working. At Children's Hospital, an MRI revealed that Theo has a blood clot -- more precisely a venous sinus thrombosis. As I understand it that's the area that drains blood from the brain. He also has some bleeding in the back of his skull, a likely byproduct of the clot. He's now intubated and sedated. If he shows enough ability to breathe on his own, the tube could be removed in the morning -- sound familiar? If you're reading this, you've probably been following Theo's story and you probably also have a ton of questions. We don't yet have many answers. I can tell you that his vitals are pretty normal and there doesn't appear to be much pressure on his brain. Those are good things. But to the question of how's he doing, we're waiting to see. We have to wait for Theo to wake up and start responding. It's expected that his right leg and arm are going to be quite weak for a while and we're in for a lot more physical therapy. The big thing is we need to see that the clot isn't growing and soon starts shrinking. Here's the catch. To accomplish that, Theo has to go on more blood thinner (heparin) even though that increases the overall bleeding risk. And we need the bleeding to stop. We'll be getting a CT scan soon. Doctors have hard jobs. So we're going to be here for a while. My folks, always on call, moved up their flight from Tuesday to Sunday morning. We're not sure what caused the clot. Theo's been on a number of drugs that could do it and he has Factor V Leiden, a clotting disorder. We and the doctors thought that was all under control with the Lovenox. Theo had been having some headaches of late and his energy was low. But his ANC has been low so that's not a total surprise, and headaches and nausea are potential side effects of almost every chemo and steroid. He played mini golf on Thursday and Friday and Anne said it was all fairly normal. Anne and I could both see that he wasn't quite right, but there were so many possible explanations. So much deja vu. I'll have more information to share soon and will update you as soon as a I can. For now, please keep this little dude in your thoughts. He's been through so much this year. He's a remarkable trooper. He'll get through this too. I can't close without a shout-out to some people who I'm sure will never read this. First, the staff at Neptune's was amazing. They rallied to our support and held our hands the whole time -- however long it was. So happy to have them in Alameda. Second, much love to the person at the laundromat who put a bunch of quarters in my dryer when I ran out. After Anne and Theo got in the ambulance, I spent a half hour in the laundromat making phone calls to the hospital, to family and to find a place for Hugo to go. I'm not sure I was capable of putting six quarters into a machine. Be nice to strangers, y'all. You never know how much it could mean. Peace and love. |
Ari and AnneUpdates on how Theo (our treasure) is progressing |