This was my last Instagram post before we found out my son, Theo, had leukemia. It seems silly now… big doors opening to Children’s hospital? We spent two weeks in Mexico over the holidays. It was beautiful as always. I came home feeling refreshed and recharged for the new year ahead. Well, life happens, whether you are ready or not. So here we are. I don’t think anyone can ever prepare themselves for cancer. Not even Spiderman. But we are strong, we are brave, we are champions.
I am opening the doors to my heart and mind with this blog. It is my way to keep friends and family updated with Theo’s leukemia treatment. A way to for me to express my feelings and share my family’s adventure. Welcome to my blog.
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“If you can imagine it, you can achieve it. If you can dream it, you can become it.”
Not a sound to be heard. Not a squeak, not a word. The air becomes paralyzed in the night, as shadows swallow up all the light. The darkness so thick, you can barely see, while coldness creeps up houses and trees. Eyes heavy as dreams start to dance. The world closes in before the last glance. A peaceful slumber is what I need. To be rooted in bed, just like a weed. But outside there is an infinite abyss. Of planets and stars, in silence and stillness. So many questions about life to ponder. Thoughts race, and my mind starts to wander. My body is ready to loosen and let go. But my mind is still spinning, and emotions grow. The smile I wear all day disappears, as anger and sadness arise from my fears. I try to ignore it, try to push it away. But the more I try, the longer it will stay. I thought the poison was already gone. But this venom runs through me, I guess I was wrong.
“The witching hour” in Roald Dahl’s book, The BFG, is when all the dark things come out in the middle of the night. I do not believe in monsters, and I am not afraid of the dark. But sometimes, when I’m lying awake at night, unable to sleep, the witching hour approaches, and dark thoughts come sneaking into my room and fill my head. You know how it is. You’ve been there. Unable to sleep. Restless because your mind won’t stop. Theo falls asleep. He had his shower, took all his pills, his line is flushed, teeth are brushed. There is nothing left for me to do but sleep. But the monsters that I have been pushing away all day are waiting for me. All day every day, I am with Theo. Smiling, energetic, happy, full of hope and ready for greatness to happen! There is no room for panic or worry. There is no point to panic and worry. I do my best to control what I can and let go of what I cannot. I want to be my best self, the best caregiver for him. Stay positive. Negative emotions are kept to myself, tucked inside until I am alone, at night with my thoughts. Theo is pure joy. Well mannered, funny, brilliant, silly, and packed full of unconditional heart-warming love. It’s nearly impossible to be in a bad mood when I’m with him. Like I’ve said before, HE is my teacher. So, it breaks my heart watching him go through this. Putting up with it all. He works so hard to get better and NEVER EVER complains. That is my anger. He is fighting for his life every day. When Theo relapsed in June 2022, I wrote, “I have spent the last 7 days shedding so much anger and sadness and there is still more to let go.” Well… I’m still working on it.
Tomorrow is DAY 100!!! You don’t know this, but I am screaming on the inside right now. It feels like we just made it through the Fire Swamp from the 1987 film The Princess Bride. We made it past the delicate and very unnerving initial part of recovery. Also (and this is my absolute favorite part) Theo gets his central line removed next week!!! Talk about the best birthday present EVER! No more dressing changes, line flushes, cap changes. Theo is most excited because finally, he will take a bath comfortably, without an Aqua Guard covering his central line. It’s been nearly 10 months with those two lumens dangling from his chest constantly. Last September, Theo asked me to buy him a fancy (and expensive) bath bomb. He has been saving it ever since then for his first bath without his central line. Certainly, something to celebrate. We are not heading home to Kingston yet, but soon. First, the doctors need to determine if Theo’s body is ready.
So how do we know when Theo’s body is ready? When we look at the human body, there is SO MUCH to see! Our bodies are very complicated, interconnected machines. Every part of Theo’s body and blood work is monitored to make sure it is performing as it should. The tricky thing about bone marrow transplants, is that at any moment, something can change, and the reason is not always obvious. Presently, Theo is doing very well. “Exceptionally well” says his BMT doctor. He recently had an echocardiogram that showed his heart function being within normal range. He also had a bone marrow aspirate done on March 16th, results pending. His blood counts show a growing immune system, and all other numbers from his blood work show normal functioning organs. Phew!! He also recently had a bone density exam to see if there’s been any delay in bone growth. And he did the pulmonary function test again to compare the results with those prior to transplant. So far so good. There are no major concerns. The one issue that continues to be the roadblock in his recovery is the graft vs host disease (GVHD). It is the pestering pebble stuck in the shoe. The eyelash in the eye. The itch on the back you cannot reach. Just go away already!! We must be patient. It just takes time. Theo’s rash finally cleared, and the steroid taper started again. He is currently taking 10mg of prednisone a day, tapering down 0.5mg every 3 days. At this rate, he is scheduled to be done with steroids by mid-May. As long as Theo’s tummy cooperates, we should be able to go home early to mid-April.
Every time Theo has an issue with his tummy, I send a message to his team through MyChart to report the issue. I have recently sent several messages with titles such as, “toilet time”, “tummy troubles”, and “icky update”. Theo’s tummy is behaving like a rollercoaster ride. Some days are good, no issues. But then there are days when he has abdominal cramping, tummy aches, and the overall feeling of being “icky”. It seems to come and go, no matter what or how much he eats. Theo has acute GVHD. This type of GVHD attacks the skin and the gut. That’s why he is on multiple types of steroids. Not just prednisone. He also takes Beclomethasone and Budesonide, two types of topical steroids that target healing the gut. The prednisone is what turns him into a hungry hippo. Theo is still thinking about food ALL DAY. He locks onto one thing and obsesses about eating it until he gets it. It’s crazy!! And it’s so random. Out of nowhere he suddenly wants shrimp, zucchini, or twisty noodles (and yes, they MUST be twisty). He will keep bringing it up, all day, until he eats it. Overall, his diet has been very healthy. His doctors are amazed at what he eats, especially for a seven-year-old boy. He eats his usual favorites like cereal, eggs, toast, and fruit for breakfast. Smoothies, dumplings, rice, beans, fish, spaghetti, soups… and lots of vegetables. He truly eats just about anything (and loves to talk about it). But then of course every now and then he craves greasy fried chicken, fatty bacon, or buttery clams. With his stomach acting the way it is, we have to be extra careful about what he eats. One day I told him he needed a break from greasy fatty foods. Uh oh. Theo did NOT like that. He had a back poke coming up and was planning on eating fried chicken afterwards. He started sobbing!! “No cheeseburgers?! No bacon?! No fried chicken?!” He is extra sensitive on steroids. I must have told him at a bad time, because a couple hours passed, and he was totally fine about it. He told me, “It’s really no big deal, it’s not forever, and those foods aren’t that good for me anyways.” Good grief, what a relief! So, what is causing the abdominal pain? Could be a lot of things: GVHD, a still very sensitive stomach, backed up stool in his intestines, difficulty absorbing fats, all the medicine/pills he takes daily, especially the chemotherapy pill Disatinib he recently started taking. The two most common side effects of Disatinib are GI upset and fatigue. You name it, there are several reasons for his tummy to be unhappy.
Theo’s tummy may be unhappy at times, but Theo is a happy clam. Nothing makes him happier than an adventure with his mama and papa. That’s when Theo says, “I feel like a normal kid again.” We don’t go far, of course. Just out to the park, to play, stroll, or catch a beautiful view. It’s a special time, for the three of us to be together, having fun and laughing together. Theo loves to show Luis all of the art projects he’s been working on, a new skill he’s learned, or something funny that happened during the week. He was most excited recently to show Luis how he can play tennis. We just started playing about one week ago and now he’s hooked. He has also played with his best friend at the park! What a treat. These family outings and seeing his best friend recharges Theo. That’s the best medicine. The daily goal remains the same: feel good and have fun. Theo is staying busy with his appointments at the hospital. Twice weekly labs and provider visits. Occupational Therapy and Physical Therapy are twice weekly appointments. They are always fun, playing games, sports, or doing fun projects. Theo also gets to go the hospital classroom for in-person learning with his teacher and up to two other BMT patients (1-hour sessions) up to four days a week. Mike from Art Therapy has included Theo in a very special art project. Theo got to paint on fabric that is going to be a part of a real astronaut uniform! A real astronaut is going to wear Theo’s design in outer space! He’s one busy bee. He’s still doing online school (2nd grade) with me during the week and piano lessons with Mormor. With any extra time, we are squeezing in as much fun as possible. Bike rides, tennis, baseball, walks, workouts… doing our best to meet our daily goal: feel good and have fun. Each day, I get another daily dose of snuggles, love, and smiles with Theo to help keep the nighttime monsters away.
Knowing how to support someone who is battling cancer is not always easy or obvious. A lot of people want to be supportive but don’t know how. I heard from several people that they wanted to reach out but didn’t know what to say. They were thinking of us but wanted to give us space. It’s common to wonder, “What should I say?” “What should I do?” “How can I help?” And it goes both ways. Avoid any awkwardness, right? Many patients and caregivers do not like to ask for help, or don’t know how. They suffer in silence, hide their pain or push it way in hopes that it will be lost or forgotten. Caregivers are so focused on staying positive for the patient but often falling apart inside. Especially while in the hospital, a place that is filled with pain and distress. You don’t have to understand what they are going through. Why should you? But you can support them in so many ways! Here are a few things you can do that a cancer patient or caregiver may appreciate. LISTEN to them. Let them tell their story and share their pain, without you needing to understand or give advice. Reach out, let them know you are there for them. Keep checking in. Do not stop checking in just because you haven’t heard back. Offer to go on a walk with them. Bring them a coffee. Send them a card. DONATE BLOOD! Donate to cancer research! Theo loved it when he received cards from his classmates, a video from his best friend, or an email from someone he admires. It doesn’t take much. But it always brought a smile to his face to know people were thinking of him and that he was missed. An older man (a patient receiving radiation) who had seen Theo in the Radiation Oncology Clinic at the UW sent Theo a Spider-Man plushy with a friendly note. It brought me to tears that a complete stranger would do something so sweet to lift Theo’s spirit. And there was so much more! Books, toys, blankets, slippers, cozy hospital clothes. But even just a simple, “I’m sorry you are going through this” means a lot. I never dreamed that MY CHILD would have cancer. That we would be on this side. The side receiving help and support. No one ever thinks that. But now that we’re here… we know what has helped us and we are grateful for the support and love.
“Open your eyes and see what you can with them before they close forever.” – Doerr, Anthony. All The Light We Cannot See. Scribner, 2014
When I was 32 and a half weeks pregnant with Theo, my water broke. It was not an explosive gush of water onto the floor, but a slow drip, like I was peeing my pants a little bit every time I stood up or took a step. Luis rushed me to the hospital where I was admitted to the antepartum unit. There was still enough amniotic fluid surrounding Theo to keep him safe and growing inside my body. I was kept on strict bed rest while receiving antibiotics in hopes that I would stay pregnant as close to my due date as possible. Two weeks later, at 34 and a half weeks, I went into labor, and our superhero was born. Weighing a mere five pounds, two ounces, he was 100% joy and beauty. Theo stayed in the NICU for three weeks until he was strong enough to come home with us. He was SO tiny! There’s a picture of Luis and I holding the car seat with Theo inside. You can barely see him! Theo was finally coming home, and I was never more excited and scared in my entire life. What if he doesn’t breathe after he swallows the milk? There would be no monitors alerting us to tell us when he needed to take a breath. No nurses to remind me how much formula to add to my breastmilk. No doctor checking in to make sure his vitals looked good. Theo was still so helpless, such a fragile baby. On January 18th, 2023, Theo was discharged from Seattle Children’s Hospital. He seemed almost as fragile to me on that day, as he did nearly eight years ago, leaving Swedish Hospital. My heart was racing, my mind was spinning. Once again, I found myself with that overwhelming feeling of fear for my son, who just days prior was hooked up to three different IV monitors, watched night and day by doctors and nurses, and was now going to be in my care. The transition nurse said exactly what I was already thinking, “It’s going to feel like taking home a newborn”. This discharge was like no other we had experienced before. This was the big one.
Being a full-time caregiver is a lot of work. But that’s ok, because caring for Theo is my full-time job. Luis does as much as he possibly can to help with everything, but it’s hard because he already has a full-time job. He does not live with us right now and when he visits, he has to be extra careful and wear a mask around Theo. Being Theo’s caregiver requires that I live in a bubble with him. We are together 24/7. Before the doctors would let Theo leave, I had to show the nurses that I was capable of delivering the correct meds and doses at the correct times during the day. That’s about 15 different medications (more than 30 pills) to keep track of during the day. I have a chart, a medicine journal, and alarms to help me manage it all. I even started using the large weekly pill organizer the pharmacist gave me – the one I almost threw away because I thought I would never use it. Theo was able to take one pill about every 20 minutes comfortably. With more than 30 pills to take throughout the day, it was an all-day affair, from 8am to 11pm. Theo is taking medications for immunosuppression, nausea control, viral infection prevention, fungal infection prevention, blood pressure, liver protection, heart burn, magnesium level support, and several forms of steroids to treat Graft Vs Host Disease (GVHD). Tacrolimus, an immunosuppressant, is extremely time sensitive. It MUST be taken every 12 hours to keep levels stable. If it is given even 30 minutes late, I have to call the hospital and potentially bring in Theo for a blood draw so Tacrolimus levels can be checked. I am also doing daily central line flushes, weekly sterile cap changes, sterile dressing changes, and last but not least, delivering IV fluids at night. That last one I was not excited about. It meant another three-hour training session on how to set up the IV pump and fluids and more boxes of medical supplies to take home. Not to mention having to listen to a loud pump at night with alarms. Well, at least Theo didn’t need the feeding pump! That was a huge relief. Theo’s magnesium levels were low. IV magnesium gets absorbed differently than oral magnesium, which is why Theo needed the IV fluids with magnesium. The doctors said it might not last long. Fortunately, they were right. Theo did not need the IV fluids much longer than one week. This phase in the recovery process is the heaviest. As recovery continues, things will get easier. One less pill to take, one less box to check on the to-do list. Little by little, the load gets lighter and lighter.
Theo, on the other hand, is getting heavier and heavier! He has been on a strong dose of steroids to treat GVHD since being in-patient. His appetite is voracious. He wakes up thinking about food and doesn’t stop until bedtime. When we are not at the hospital for appointments, we are at my parent’s house (where we are staying) in the kitchen making food. Before Theo is done with one meal he is already thinking about the next. Cook, clean, repeat. Over and over again. Fortunately, Theo is surrounded by amazing cooks who enjoy feeding him delicious food. My mom graciously takes dinner orders from Theo every day. What’s for dinner tonight? Spaghetti? Chicken soup? How about crepes for breakfast? We are spoiled!! And thank goodness for “traveling chef Papa”! Luis, who is super busy traveling and working, is living in our home in Kingston with our dog, Manu. We are lucky if we get to see him more than twice a week during a quick lunch break. The best days are when we get to spend time together on the weekends. But no matter how short or long a visit, Luis always makes something special for Theo. Often times Luis has shown up just long enough to cook Theo’s favorite: a juicy steak and yummy mashed potatoes, and then has to sprint out the door. Theo LOVES Papa’s food. It is medicine for his soul. Theo lights up like it’s Christmas every time he gets to see Luis. It is not easy being apart from each other. I dream of time together as a family. I yearn for time with my husband!! Patience. We will get there. But for now, Theo and I are staying safe and healthy in our little bubble, close to the hospital.
All of this delicious food and extra love has added 11 pounds to Theo’s frame. The doctors are not at all concerned about his weight gain. In fact, they are pleased to see him eating and drinking so well. It is much better for Theo to be above weight while he recovers rather than underweight. It’s only a problem when I have to pick him up to carry him upstairs! By back, ouch! The steroids will end, but it takes time. The dose is slowly being tapered down over months. Steroids cannot be stopped abruptly. It has to be a slow process. It’s a fine balance of calming down the new cells so they stop attacking their new home, but not so much that they stop growing and being active. Like baking a cake. You need just the right temperature and time, so the toothpick comes out clean. We are looking forward to the end of steroids. Not just so Theo can get back to more regular eating habits, but also so he can sleep well again. Steroids make it hard for him to sleep. He wakes up constantly with the need to have his legs stretched or because he is “uncomfortable”. The steroids were originally scheduled to stop at the end of this month. Unfortunately, the dose was recently bumped back up. Theo broke out in a rash all over his chest and back about one week ago, a sign of GVHD returning. He wakes up often, feeling itchy and needing lotion several times a night. Triamcinolone ointment is applied to his entire body three times a day in attempt to calm the rash. For now, it is mild and will hopefully go away with the topical steroid ointment. If it gets worse, the course of steroids and taper will start all over again. Apparently, it is not uncommon for this to happen. In fact, it is expected to see some GVHD in patients post-transplant within the first 100 days. GVHD can come back many times while the new cells are getting used to their new home. The good thing about MILD GVHD is that we know the cells are strong and active. It’s a positive sign that Theo’s new immune system is up and running!
Other than the GVHD returning and the possibility of it getting worse, Theos’ doctors are not on high alert or concerned about anything else at this time. Of course, Theo’s body is healing and there is still a long way to go. This is the most delicate time. Theo is required to stay within 30 minutes of the hospital until at least day 100 and all the post-transplant testing has been done and evaluated. If he looks stable and there are no concerns, then we get to go home to Kingston! Presently, Theo’s skin is dry as a desert from the radiation. In some areas it looks like lizard skin. At one point even the bottoms of his feet were constantly peeling. He also has some dark pigmentation spots that look like a healing sunburn on his arms and head that should clear up eventually. Applying thick layers of lanolin lotion to his body twice a day has definitely helped (in addition to the steroid ointment). Overall, Theo’s body is on track and doing what it needs to do. His blood counts are stable and strong, his kidneys, liver, and other organs are all functioning normally. No red markers or signs of Theo’s body slowing down. ALL GREAT NEWS.
Theo had a bone marrow aspirate done on day 63 (February 6th, 2023). He was so excited for the “sleepy milk” that after it was given, he started counting backwards, “10, 9, 8…” but instead of saying zero, he shouted, “3, 2, 1, NACHO!!!” It was a triumphant cry as his eyes rolled to the back of his head and his body flopped back like a cooked noodle. It was hysterical, the entire room was laughing to tears. The bone marrow results came back: negative! Not that we were expecting anything other than negative. But as Theo’s doctor said, “it’s good to go straight to the factory to see what’s going on.” In other words, be absolutely sure that the bone marrow is performing as it should. And it is! The chimerism results came back and 100% of the cells in both Theo’s bone marrow and peripheral blood are donor cells!!! This is THE BEST! You cannot ask for better results than this!
The protocols are very conservative here at Seattle Children’s Hospital. On day 84, Theo will have another bone marrow aspirate. Then, Theo will start taking Disatinib again (oral chemotherapy) similar to his maintenance phase of treatment back in 2021. I was shocked when I found out. WHY more chemotherapy???? Hasn’t he had enough? According to the doctors, they believe that if there is ANY chance that the leukemia can come back (because yes, there are very few cases where it has) then they should be doing everything they possibly can to make sure that it doesn’t. Instead of saying “could’ve” or “should’ve” they want to say, “we did everything we could”. Leave no stone unturned. There is no reason to think that Theo’s leukemia will ever come back. Theo is stronger and healthier every day. The transplant was a success! Having this nagging fear of the leukemia returning is just something parents like us, parents of cancer patients, have to live with. I don’t know if that fear will ever go away, but I do believe it will lessen the farther out we get from DAY ZERO, transplant day. So, we’ll look forward to every new day, keep counting, one day at a time.
“Children should never have baths, my grandmother said, it’s a dangerous habit.” (Dahl, 1983, p.122). Do you know about The Witches? They want to rid the world of children and think they all smell like dogs’ droppings! It’s a good thing those witches do not exist. Theo would certainly smell horrible to a witch and therefore get caught by one, due to how often he bathes and washes his hands! The protocols for cleanliness and staying safe are also very strict. Keeping a clean body and a clean household are extremely important for infection prevention while Theo’s immune system is still growing. So important, that they make you take a three-hour class on managing care at home and then review with the transition nurse for another hour the day before discharge. There is a very strict list of items Theo must avoid, like soil, dust, sand, construction debris, plants, animals, and even the sun! Skin cancer is the most common secondary cancer that bone marrow transplant (BMT) patients get. So, if Theo is in the sun, he will be completely covered. The cleaning protocols started to stress me out quite a bit. I started to feel like if Theo touches a surface that hasn’t been soaked in bleach, he will get sick! Now that’s absurd. Fortunately, my mom reminded me (thanks mom) we are already a very clean safe family. Who dusted the hospital room weekly and disinfected the toilet multiple times a day and wiped down every surface touched by humans in our room? The hospital cleaning crew? Certainly NOT. It was me. Theo and I are also living with my extremely clean parents, who wear masks around Theo and keep a cleaner household than Mary Poppins. Yes, we have to be more careful and follow some more guidelines, but I don’t have to stress so much about everything. And stick to what we know works: stay away from crowds, wear masks and wash our hands often.
There are so many bugs and viruses out there. Sometimes even living in a bubble cannot protect you from everything. Yes, even BMT patients can get sick from the “normal” stuff out there. Just this past weekend, Theo caught norovirus. Almost certainly from ordering take-out pho from a restaurant. The nausea hit him suddenly. At first, we were so frightened. Is it GVHD coming back with a vengeance? A stomach infection? Appendicitis? None of the above, thank goodness! It cost us two nights in the cancer care unit. Then it was passed onto me and Luis. We suffered its wrath for another two days. It was anything BUT fun, but fortunately, it was just a nasty tummy bug and nothing more. Theo bounced back quicker than all three of us and has been feeling great ever since. He gets incredibly worried when his mama or papa are sick. But leave it to Theo to make us laugh, smile, and feel better even when we are down in the dumps. Theo is a true caregiver. He cares so deeply for the well-being of the people he loves. For 24 hours, our roles reversed, and he took care of me instead. I’ll always remember the feeling of his arms wrapped around me, gently rubbing my back as he told me, “You’re going to be ok, I promise.”
Today is day 73 post-transplant!! Theo has been out of the hospital for just over one month. The first couple of weeks out of the hospital were tough. But I think we finally found our groove. We have a well-established routine and Theo’s energy is climbing fast. Leaving the hospital, Theo needed a wheelchair to get around. He was so tired all the time, so exhausted he could not stand up for more than 10 minutes. The first two clinic appointments he could barely keep his eyes open. One week after discharge, an anti-nausea medication that causes drowsiness, called olanzapine, was removed from his nighttime routine. Theo’s energy immediately showed improvement. A few days later, Lorazepam, another sedative, was removed. BOOM! The lights came back on, and Theo was awake again!! Good-bye and good riddance to you, Mr. wheelchair! Oh, what a difference. It’s like Theo had been under a spell, in this loopy sleepy haze for so long. Presently, Theo stretches every morning, takes a walk with me at least once a day, is dominating his physical therapy appointments twice a week, walking upstairs unassisted, and… (drum roll) riding his bike!! What an amazing accomplishment. I couldn’t believe it. It was a beautiful sunny crisp cold day last week, and Theo decided that he wanted us to ride our bikes along the Burke Gilman trail and stop somewhere for lunch. It was SO FUN and I was SO PROUD I couldn’t stop smiling. Theo does whatever he sets his mind to. He is focused and motivated to get healthy and strong. Theo is also incredibly aware and observant of what’s going on around him. He is not shy to speak up and correct me or a nurse if we say something that is inaccurate. Even when you think he is not paying attention, he is. He may look like he’s sleeping, but oh no. Don’t be fooled. He is listening and hears everything. He knows how to pronounce all the names of his medications. If he hears someone mispronounce a medication, he quickly corrects them. Like Dexrazoxane. Try saying that. It’s not so easy, is it? He knows he is my angel, my sweet boy. But he is also my strong warrior and teacher. He reminds me to take deep breathes, to set a daily goal, to not speak while chewing my food, and to not use words like “hate” or “stupid”. In many ways, Theo is also my caregiver. When it’s time to turn off the light and go to sleep, Theo pats me on the shoulder and says quietly, leaning towards my ear, “if you need anything, I’m right here”.
“My favorite thing about being out of the hospital is going for walks outside.” – Theo Avila
Theo is required to be within 30 minutes of Children’s Hospital until at least day 100. We are very fortunate to have my parent’s house to stay at during this time. I often think about how much harder this could be if we had to stay at the Ronald McDonald. Or if we had to move from a different state. We don’t get to see Luis very often, but at least we get to see him! There are so many families going through this who have to travel long distance for treatment. They are apart from friends, siblings, or spouses. Families torn apart… for months, even years! For as much as I complain about long stays in the hospital and being apart from Luis, we have so much to be thankful for. Thankful for my parents and their endless hospitality. For family and friends who are always checking in on us. For friends near and far delivering gifts and offering support. Thankful for food deliveries and gift cards while staying in the hospital. We thank you all from the bottom of our hearts.
It’s a new year. Time to put away the holiday decorations and say good-bye to Mariah Carey for at least the next 10 months. Time to take a break from airports, shopping, overeating, over drinking, and over stressing. It’s time to start getting serious about that new year’s resolution you made before the ball dropped at midnight. What was it again? Something about getting organized? Or was it exercise? On second thought… WHO CARES?? That’s right. Whether it’s a new year, a new season, or a new month. Any day is a perfect day to do something great or to make a change. That’s the beauty of each day. It is an opportunity. A new beginning. Perhaps even a second chance.
Today is day 34 post-transplant, day 41 in the cancer care unit. That’s right, Theo is still in the hospital. We will officially be passing the estimated stay of four to six weeks. And that is totally fine. Theo is here for a reason and getting the care he needs. So now, let me tell you why we are still here. Let’s back up to mid-December. SO MUCH has happened. I apologize in advance for the lengthy recap, so I’ll get right to it. Theo finally got his last dose of methotrexate on day 11 post-transplant. The doctors were right. The week between day 6 and day 11 are the worst. Even though he was on a morphine drip, he still woke up every morning with intense mouth pain. It hurt for Theo to even talk. About one week before Christmas, he stopped eating. He wanted to eat, and he definitely tried, but it was too uncomfortable. His gums were fire engine red by then. It hurt just to look at them. The diarrhea also got worse. Multiple accidents in the middle of the night and during the day. Fortunately, by day 11 (Christmas eve) the pain seemed to be under control. Finally!
Christmas in the hospital was quiet. Theo woke up, opened his presents in a zombie like morphine fashion, then went back to bed. He slept most of the day, waking up here and there in a daze doing his best to smile and show excitement that Santa had come. The best part about Christmas this year, was the appearance of Theo’s new immune system. On Christmas morning, Theo had brand new cells. 218 neutrophils!! Engraftment! Well, technically, for the doctors to call it engraftment, Theo would need a neutrophil count of at least 200 for three days in a row. Well, close enough. That alone is all we needed to celebrate. The best present we could’ve asked for. What came next, was no present at all. Christmas suddenly went from mellow and merry to a feverish frenzy.
By Christmas evening, fevers and nausea hit Theo hard. He spent the next 24 hours throwing up while the anti-nausea meds played catch up. The fevers and throwing up continued for the next several days. Tylenol lowered his fever temporarily, but two hours later it was up again. Theo was barely sleeping; he was so miserable. Theo’s body was also covered in an angry red rash. The diarrhea? Still super bad. This was a classic case of engraftment syndrome. Theo’s body had accepted the new bone marrow and it was making new cells. Super! But that rapid new cell growth can cause an inflammatory response. Recall that Theo’s insides are practically mush. He has mucositis running through him! Those new cells can’t wait to rush to all the areas of the body that need healing and get straight to work. Similar to cytokine release syndrome, you get an overactive immune response, and that causes fevers. Fevers so high that one night it reached 106.4 Fahrenheit!!! We were terrified. Theo needed more than Tylenol. Engraftment syndrome is treated with steroids. Theo received his first dose of steroids on December 28th. Almost immediately, he felt better. Finally, he could rest comfortably. Sure, he was emotional (steroids do that) but that’s okay! Steroids can also raise your blood pressure. We are so proud of Theo. One afternoon, after Theo’s blood pressure had reached a new high, the nurse approached him with a syringe of blood pressure medicine ready to shove it down his throat. Very forcefully he told her to stop and said to her, “Wait!! Wait!! You haven’t even told me the name of that medicine and why I have to take it!” HA! Good for you, Theo! Way to keep yourself informed. Luis and I are the ones that give him his meds. He prefers it that way.
By December 31st, the doctors wanted Theo to take ALL his meds orally. If we wanted to leave the hospital anytime soon, he had to make the switch back. The steroids had been successful at treating the engraftment syndrome and therefore helping Theo feel better. Theo had been receiving nutrition and his meds through his central line for weeks. Taking pills, something that is usually super easy for Theo when healthy, suddenly seemed impossible. Turns out… it actually was. And that is when my anger started to burn. I wrote furiously about it in my journal. Lots of swearing, lots of capital letters. It had been four days of Theo taking all his meds by mouth. Out of those four days, there was only ONE night that he didn’t vomit while having diarrhea in his pants while taking his pills. That’s 10 pills in the morning and 10 pills at night. It was torture for Theo. His stomach was not ready to handle all the water he needed to get the pills down. “It’s a challenge for all of our patients” one doctor said. NO SHIT! But this can’t be the answer. “Here you go mom, give your child these 20 pills today and hopefully he doesn’t puke them out.” Oh sure! Never mind the diarrhea, the not eating, the feeling like crap. So there I am, pill in hand, hoping and praying he won’t first freak out and then throw it up. Increasing the anti-nausea meds to the maximum dose and frequency helped a little bit, but it was still torture. Most nights Theo falls asleep by 8pm, so I have to wake him up every 30 minutes to give him another pill. Even if we started early in the evening, I was up until midnight trying to get them down. We kept telling ourselves and Theo, “It gets easier every day, tomorrow will be so much better.” If only it had been.
Before things got better, they got worse. By January 4th, Theo was having fevers and his nausea got worse again. Not even the anti-nausea meds seemed to help. We were back to sleepless nights with a stack of throw up bags by the pillow. Just like it was before the steroids. High fevers and rash, but with more nausea. Now what? The doctors all agreed it was most likely graft vs host disease (GVHD). Basically, the same as engraftment syndrome, but since the cells have officially engrafted, it’s called graft vs host. But the doctors need proof! It’s dangerous to give steroids without being 100% certain that it is NOT an infection causing the fevers. Steroids can mask the signs and symptoms of an infection, allowing it to grow worse. On Friday, January 6th, Theo had a scope placed in his stomach and lower intestines to check for signs GVHD. A biopsy was also taken to get a closer look at the cells. They were looking for apoptosis, aka cell death, in the lining of his stomach and intestines. They found mild GVHD and began treatment of steroids right away.
I don’t know about you, but this rollercoaster ride is making me dizzy. Had enough yet? Good, because there’s more!
Theo felt better for five glorious days. And then… you guessed it. Fevers and intense nausea. On the morning of Tuesday, January 10th, Theo spiked a fever and presented with very low blood pressure. All his meds were switched back to IV (again!) So what now? GVHD? Not likely. He was still on steroids, which should be treating that, especially because it was only identified as mild GVHD. Ok, so was it an infection? A fever is a sign of infection. Nope. No sign of infection. There was no bacteria growth in his blood, his viral swab came back negative, the CT scan was normal, and all blood tests for viruses came back negative. It was a complete MYSTERY!!! Other teams got involved. Infectious disease doctors and Gastrointestinal doctors all joined the party. Each with their own theory in mind but no evidence to solve the mystery. A lot of “possible” answers. Although, every doctor was incredibly reassuring that Theo would be ok. Clinically, he looked GREAT! A growing immune system – stronger than expected this far along, no inflammatory markers, normal functioning organs, no signs of stress in the body other than the fevers and nausea. In the end, they decided to add on two more antibiotics (he was already on one) through Theo’s central line. Just in case there was some bacterial infection their eyes were somehow not seeing. It’s called, culture negative bacteremia. It worked! Hooray!! That brings us to TODAY!
Presently, Theo is not throwing up, not having diarrhea, he does not have a fever, he is EATING, he is taking almost all of his meds orally, AND HE’S SMILING. On Monday, January 9th, Theo had a bone marrow aspirate done. The results are incredible. 99% of the bone marrow are donor cells. Only 1% are Theo’s cells. That is a huge success! Really anything over 90% is good, but 99% is remarkable. And not only is there NO leukemia in his bone marrow, but there are no cells with the specific leukemia marker that Theo used to have. I think this means we might be getting out of the hospital sooner than later!
Six weeks is a long time to be in the hospital with your child. It doesn’t feel like reality. This is not my life. That child is not my son. My son is silly, full of energy, loves to play and eat! Who is this boy? Who lays in bed all day, barely able to speak, too weak to walk, no expression, eyes glazed over, and who cries so often, so easily? Theo is unrecognizable inside and out. It is an understatement to call this a hard journey. We already did that, for two years. This is not hard, this is brutal. Trying to stay positive and calm throughout this wild rollercoaster ride, week… after week… after week. The agony has been running through us consistently, forcefully, and stabbing every part of my tender heart. But I am not broken. I have my family and friends. I have Luis and Theo, the best two wise old loving souls as my super glue. Theo says we are like a giant peanut butter and jelly sandwich (my favorite). We are better together. Especially during these long hospital stays. Luis is my lifeboat. Always there when I need him with an answer. The last thing Theo needs is to see his mama and papa freak out or cry. We must choose how to act. How to respond and get solutions! When he sees us steady, confident, and calm. When he sees us put our trust in the doctors, he will follow. Whatever it takes. We give Theo everything we have. Our time, our hearts, and a world of endless possibilities!
Theo has been reborn. He made it to the other side. Isn’t it just incredible? He has a brand new immune system. New strength, new life, a new beginning! All thanks to the brilliant minds of so many doctors, decades of research, and countless volunteers. One in particular: the donor. A complete and total stranger!! And when I say countless volunteers, I mean it. How fortunate we are to live in a place where blood products come so easily. You know why? Volunteers. We would also be lost without all the nurses, physician assistants, and nurse practitioners, who go over and beyond to help Theo through this. They give so much, work so hard, and care SO much. They deserve all the thanks in the world. DONATE BLOOD, PLEASE! The lives of so many children depend on it. VOLUNTEER! It doesn’t take a lot to make a huge difference. You can do so much more than you ever imagined. Give what you can, while you can, and it will come back to you 100 times greater when you are in need. Trust me. I know because we have experienced it firsthand. BE THE MATCH! You can literally save someone’s life by donating your bone marrow. It is so easy to take for granted our health, our status, and our comforts. It is not until the rug gets pulled from under our feet and we are sliding toward the edge of the cliff that we wake up!!
I asked this question before, and I’ll ask it again: Do you live your life like you’ve survived cancer? I ask myself this question so often. Sadly, cancer is all too common these days. How can we live a life without regrets? I don’t believe that it means you have to make dramatic life changes, going through the bucket list, or go jumping out of airplanes. It’s actually a lot simpler than that. I believe, all it takes is a change in perception or a different view. We so easily follow the patterns of negative thinking. For example, it’s January. Gloomy, ugly, rainy, boring January. But is it? It is really that bad? Or are we just in a pattern of saying and therefore believing it is bad? It depends on where you live. It depends on how you see things. How you perceive the world. Maybe January is beautiful in a different way. Have you ever stopped to notice? Believe me, I try. I’m always dreading the dark, cold months of winter in Seattle. But then summer arrives, and it’s beautiful and sunny and bright, I love it even more!! A little bitter, enhances the sweet, like the appreciation of a sunny day after weeks of rain. That makes January wonderful. Try to find something in every day that makes you happy. A smell, a song playing on the radio, a new recipe. Do something for someone else, without them asking. Buy someone a coffee. Dream bigger! Aim higher! Let go of that fear. Spread that joy and then go donate blood (seriously, right now, do it). Stop for a moment and appreciate it. And also… appreciate yourself.
” The real voyage of discovery consists not in seeking new landscapes, but in having new eyes” – Marcel Proust.
Every year for Christmas, I make a big batch of limoncello. This year is the third year I included a poem to go along with the limoncello. Something to make it a little more festive. This year’s poem is dedicated to Theo. It’s titled (no surprise here) NEW BEGINNINGS
If you could go back and start all over again. Would you do anything different? C’mon let’s just pretend. / Would you have saved more money? Tried harder in school? Probably would’ve cut that mullet, they were never that cool. / Would you have danced a little longer? Stayed up really late? Or passed on that last martini? The next morning didn’t feel so great. / Would you have traveled more? Off to distant places? To experience other cultures? To smile at different faces? / Would you have learned another language? Or two or three or four? Gracias. Mi scusi. S’il vous plait. Por favor! / Would you have told that lie? Or said those hurtful things? Anger is an evil beast. Only sadness does it bring. / Would you have spoken up? Let your voice be loud and clear? Maybe you weren’t ready then. Ready to let go of that fear. / Would you have eaten that extra slice of delicious chocolate cake? Oh… my! You ate the whole cake?! Well that explains the tummy ache. / Does it even matter? What we could’ve or should’ve done? Focus on TODAY! Treat it as day number ONE. / If you want a second chance, take it. Here you go. This year we celebrate new beginnings, a second chance to learn and grow. / We welcome Theo’s new life and brilliant rejuvenation, with this batch of limoncello. It’s a joyous celebration! / So the next time you are wondering, what you could or should do. Take a sip of limoncello and remember, today is brand new!!
I can still remember the first time I saw Theo smile. It was beautiful. I wanted that smile to last forever. Like a drug, I was instantly addicted. I craved it every time I picked him up in my arms, like my life depended on it. Finally! After months of feeling like some crazy sleep deprived maniac, I saw that smile. So many sleepless nights, crying, spitting up, changing diapers, and singing songs until my voice was gone. I was delirious. But then… there it was. That handsome smile, telling me that he loved me back. I knew that everything, every moment, every dirty diaper and minute of sleep lost, was all worth it. I saw it, he was happy. Here in the hospital, I crave that smile more than I ever have before. Because every time I see it, my heart breaks a little less.
It happened so fast. Theo’s energy melted faster than a snowman on a hot summer day. Here today, gone tomorrow. Not right away. Later than expected, but it still faster than the speed limit. Not that we were expecting him to have energy. We were well informed of what was coming. It’s just that he was feeling SO GOOD so far into treatment. Theo was admitted to the cancer care unit at Seattle Children’s Hospital on December 5th, 2022, the first day of Conditioning (DAY -7). The week prior to that, Theo had three consecutive days of radiation to his brain. This was in addition to the four days, twice a day of full body radiation he got the week of conditioning. One day at the radiation clinic, Luis told Theo that it was okay to feel more like 80%, because it’s normal to slow down a bit. Theo, agitated at the comment, corrected Luis immediately saying, “I am 100%!!” Incredible. He was drinking the required 55oz and more of water a day so he would not need to be hooked up to the IV pole for fluids. He was doing his school lessons. He was scooting through the hospital hallways after his radiation appointments. He was eating A LOT. It wasn’t until the fourth and final day of radiation that we saw him start to slow down. A little less chatty, a little bit slower, but still feeling good. He needed very minimal anti-nausea medication. Radiation days are very busy. We were given the option on the first two days for Theo to be transported to the UW radiation clinic via ambulance. We chose to drive because Theo didn’t need to be in a stretcher. He wasn’t weak or needing anesthesia for his treatments. It was also faster and easier to drive. We had to go back and forth two times a day, so the less time we had to spend waiting in the clinic, the better. The radiation clinic is the opposite of bright and cheery. It’s dark, no windows, and full of tired sick adults in hospital gowns, waiting for their radiation treatment. Leave it to Theo to bring the sunshine. Smiles lit up all around the clinic as he marched through the hallways, sometimes dressed as Spider-Man. Always chatting and laughing with the friendly staff as he prepared for his turn. “Any music requests during treatment?” They asked him. “Imagine Dragons” Theo replied. It was no surprise when the radiation oncology doctor told us that Theo was doing “better than expected”. It was a good strong start to conditioning. Then came the chemotherapy…
On day five of conditioning, Theo received his first dose of Cytoxan (Cyclophosphamide). On day six, he received another. If Theo wasn’t tired, and having pain and nausea yet, the combination of radiation and high dose Cytoxan would surely do the trick. It was only a matter of time until the energy would be forcefully stripped from his body. He fought it. He didn’t want to slow down. He didn’t want to lay in bed and rest and watch cartoons. “TV is boring! I want to play ALL DAY!” Theo exclaimed. He tried. From Legos, to putting up Christmas decorations, to painting. He wanted to do it all. His brain would not settle. From sunset to sunrise, the lights inside Theo slowly turned off. Not all at once. One switch at a time, room by room, floor by floor, until…
Dark. By DAY -1 it was gone. All of the nasty side effects from conditioning suddenly came crashing through the door like a tsunami, all at once. Again, we knew this was coming, but when you are living it, breathing it, seeing it every second of every day, it leaves you heartbroken and numb. On the day before transplant, Theo started having painful stomach cramps, uncontrollable foul-smelling diarrhea several times a day and at night, painful mucositis in his mouth and all through his intestines, body aches, and vomiting. Nights have been spent carrying him to the toilet, while Luis drags the IV pole behind us with a puke bag ready in his hand. Theo swallowed his pills up until it became obvious that his stomach could not hold anything. One sip of water led to cramping, followed by long uncomfortable episodes of diarrhea. It all went right through him. How does Theo feel? How is he doing? “It is the worst I ever felt in my entire life.”
December 12th, 2022. TRANSPLANT. DAY ZERO. What an emotional day. It was incredible, it was sad, it was heartbreaking, it was a celebration… all in one. There was this huge feeling of relief. After so much waiting, so much anticipation, it finally happened!! We wanted to laugh, smile, and dance. But how could we when Theo was in pain and feeling so terrible? That’s when it really hit me. This is just the beginning. The beginning of a new immune system, a new life!! But also, the beginning to a very very long and hard recovery. The transplant itself took no time at all. Maybe 15 minutes? The stem cells were delivered to our room frozen. Once they thawed, the bag was hung up on the IV pole and connected to Theo’s central line, just like an infusion. So easy, so fast, so anti-climactic! And just like that, it was over. The transplant is done, but the marathon, the real challenge is just getting started.
Today is day six, post-transplant. Theo is in the trenches. The mucositis continues to get worse. It’s been nine days now, non-stop, of diarrhea. Of course, it is extremely unpleasant and frustrating for Theo. Especially when it is constantly surprising him, making him have accidents at all hours of the day and night. However, the doctors are not too worried. His counts and organ function look good (except for his neutrophils of course. They are zero and will be for a while). Nothing is in the red. His body is on track and where it needs to be right now. He is getting nutrition and electrolytes through his central line. As long as he continues to get the right amount of fluid IN to replace the fluid going OUT, he will be fine. Therefore, tracking the “I’s” and “O’s” is incredibly important. The doctors have Theo on high alert for veno-occlusive disease (VOD). It’s when the small blood vessels in the liver get obstructed. In severe cases it can lead to liver failure. The Inotuzumab, and radiation, and chemotherapy, are all factors that put Theo at high risk. A sign of this disease is when a patient is holding onto extra water weight. So fluid balance and tracking his weight is extremely important. Gross as it may be, it must be done. Theo has to go to the bathroom in a hat so the nurses can measure and record his waste. It’s not pleasant, but Theo does it every time. I think now we are all pretty used to it. I remember a couple of years ago having to collect a stool sample from Theo to have it tested. I thought it was so disgusting! Ha! Peanuts compared to this. Really. At the end of the day, it’s just poop. Luis and I will do anything for Theo. I would clean the toilet 1,000 times a day if I had to! Whatever makes him happy. Anything to see that SMILE.
While the protocol for bone marrow transplants hasn’t changed over decades, the support medications certainly have. Comfort is KEY. Theo’s pain and nausea are better controlled now after increasing his doses of medication. He is on scheduled morphine, Ativan, Zofran, and olanzapine. Is he comfortable now? Most of the time. Frustrated? You bet. There are moments when he has break through pain, when a medicine wears off and his mouth hurts so bad, he cannot even talk. Or when he tries to eat (because he SO badly wants to eat) but he cannot because it hurts too much. He has had a few moments when he breaks down in tears, especially when he’s tired and in pain. As he should! Even superheroes are allowed to be sad and fed up. I cannot imagine the emotions and feelings he is going through. It’s more than any child should bear. But somehow, he is still doing an outstanding job of staying positive and being the sweetest most compliant patient. He does sodium bicarbonate mouth rinses five times a day at least, gets out of bed to strengthen his legs daily, and takes the few number of pills he has to take (because they are not available in IV form) when asked by the nurse. All without forgetting to say, “please” and “thank you”, even when he doesn’t feel good. What matters most right now is that Theo is comfortable. Especially because there is more coming. It will get better, but before it does, the doctors say it will get worse. HOW? One word: methotrexate.
You might be thinking, WHY more chemotherapy? Good question! Unfortunately, I do not have a great answer, other than, that’s the protocol. Based on the decades of research and successful bone marrow transplants, it’s just part of the plan because it works. Theo gets methotrexate on day 1, 3, 6, and 11 post-transplant. That means, the mucositis, the diarrhea, the mouth sores, feeling like crap… it will all get worse before it gets better. The effects of the methotrexate build up as the number of doses goes up. Theo has already had day one and day three doses of methotrexate so far. Next are day six (today) and day eleven. Theo will also have four more lumbar punctures with chemotherapy in his near future; also part of the protocol to make sure, absolutely sure, that there is no leukemia, and it will not come back. He needs cells to start the healing process. Nothing will heal until new cells grow and new cells cannot grow when chemotherapy keeps killing everything! And that’s not all. Theo is also on a strong immunosuppressant drug, called tacrolimus. It keeps the new stem cells sleepy, so they will not attack Theo’s body. The combination of chemotherapy and immunosuppressant drugs makes the healing time much…much… longer. Like I said, it’s a long process but we can do this. Theo will make sure of it.
We are spending the holidays in the hospital, but that’s OK! Because we are together. Home is wherever you make it. And this year for Christmas, home is in room 304 in the cancer care unit with my lovies. This is the first time Luis has been able to stay with us, spending the night because he is not traveling for work right now. What a difference it makes. A hug when I or Theo needs it, help with the IV pole and bathroom episodes (always appreciated), and extra comfort that Theo feels knowing that he has both his mama and his papa by his side. To give him massages when his head hurts. To remind him of his strength and how much he is loved. To play video games with! We are all happier when we are together. That positive energy keeps all our spirits bright. Except for the time I made the mistake of saying recently, while Theo was having a particularly bad episode and on the toilet for the 10th time that day, “I hope the diarrhea will go away soon.” Theo did NOT appreciate that comment at all. He fired back at me, “You mean, IT WILL GO AWAY SOON!!” Of course! Of course! It will go away. All of this. Theo WILL feel better! I felt like I had let him down. I needed to change my attitude. He reminded me that we don’t say things like, “I hope” or ” I wish”. We say, “I will” and “I can”. So, I’m reminding myself as I’m telling all of you… This WILL pass. There are beautiful days ahead. Endless smiles await.
“I’m feeling a little blue” – Theo Avila
The feast of Our Lady of Guadalupe (the patron saint of Mexico) is celebrated every 12th of December. It is the anniversary of when the Virgin of Guadalupe appeared before the peasant man, Juan Diego, on top of Tepeyac hill in 1531. This year, more than three million Catholic pilgrims made their way to the Basilica of Guadalupe in Mexico City to honor and celebrate the Virgin. A tradition that dates back almost 500 years. Also, this year, on December 12th, Theo had his transplant. He received new stem cells, a new immune system! December 12th is a day to celebrate unity, strength, and the heart. And now, for us and for Theo, December 12th is a day to celebrate a new life. A new beginning. What better day to be reborn than on the day Our Lady of Guadalupe!
“That’s a tough man bruise”. That’s what Coach Ed, Theo’s little league baseball coach, told Theo after he got hit hard on his side with the baseball. Theo appreciated that. It was just what he needed to hear at that very moment. It hurt, and as Theo says, “I was trying hard not to tear”. I think it’s safe to say, that Theo has had many tough man bruises already in his young life. Certainly, more than me. Oh, but the biggest bruise is yet to come. I’d be lying if I told you that I wasn’t terrified. In the words of Theo, I’m trying hard not to tear.
Tuesday, November 8th, was the ARRIVAL. What does that mean exactly? It means that Theo’s care has officially transferred from Seattle Children’s Hospital to Fred Hutch Cancer Center. He has a new team of nurses and doctors that specialize in bone marrow transplants. They are the BEST people to care for Theo pre-transplant, during, and after transplant. It means that some of Theo’s appointments will be at Fred Hutch Cancer Center, and some will be at Seattle Children’s Hospital. CONDITIONING, in-patient care, and the actual transplant will still take place at Children’s Hospital in the cancer care unit. Here’s some exciting news: Fred Hutch pediatric care will be moving to the new building at Seattle Children’s Hospital! How cool is that?! Everything we need and all of our favorite people in one place. It was actually supposed to move on October 17th, and we were supposed to have our ARRIVAL in the new Children’s Hospital building, but the move has been delayed until December. We don’t mind going to Fred Hutch (the views of Lake Union are amazing from every room), it’s just… different. Theo is currently busy undergoing a full body “work-up”. Every part of Theo’s body, (lungs, heart, cognitive functioning, fine motor skills, etc.) are tested to establish a new baseline for how his organs and entire body functions. These appointments all take place at Children’s Hospital. Radiation will take place at University of Washington Medical Center. Once all of the testing is done, there will be a “data review”, where the transplant team will go over everything with us. All of this testing will be done again post-transplant to see how Theo recovers and how he compares to baseline. Theo will be closely followed throughout his life for evaluation of the long and short-term changes and side effects that the radiation, chemotherapy, and medications will have on his body.
On Wednesday, November 9th, we met with the attending transplant doctor to go over the “nitty gritty” of the transplant. That sounds horrible, doesn’t it? Well, that’s exactly what it was. All the stuff you don’t really want to hear, but you have to. The stuff that makes you pit out and sweat in unusual places. The stuff that makes you not want to eat breakfast because your stomach is too busy doing somersaults. Ready or not… here we come. In true superhero form, Theo wore his Spider-Man costume to the consultation. He was clearly feeling more confident than me. After greeting everyone in the room and sharing a few facts about his costume, he asked everyone what they ate for breakfast. Theo set the meeting off to a great start. The doctor spoke to us with compassion and warmth. She looked at Theo as though he could be her own. She was direct, positive, and pragmatic. I suddenly realized; these people already know us and love us. They are our new family members. That definitely helped me feel better when hearing all the “nitty gritty”. Long story short, it was everything we’ve heard before: Theo having a 1% chance at fertility, delayed puberty and overall, less growth, “very very very very” low chance of liver or kidney failure, potentially ending up in ICU, thyroid disease or failure, decreased lung and heart function, about 2/3rds chance of getting tumors later in his lifetime, higher risk for diabetes, and last but not least, lower IQ. Yeah, that’s the BIG bruise I was talking about. Like I said, there will be side effects. Not all, but some. How much… we don’t know. But enough of that. Let’s talk about Theo.
When you look at Theo today, your last thought is, “cancer patient”. Just look at the photos! He’s full of energy, riding his bike, racing down the street, jumping into the pile of leaves we raked in our front yard. He’s eating like he has a bottomless stomach and exercising like he’s training for the Olympics. Him and his best friend started a book club. They just started their second book, 13-Story Treehouse. Ugh, I love it! How sweet and smart these boys are. Since CAR T-cells, Theo has been feeling great. Once again, he was given the green light to come home to Kingston until conditioning begins. We only have to stay in Seattle when he has appointments. Therefore, we have been able to spend even more time together as a family. WAY more than we initially expected. More time home means more “Papa and Theo days”. More time in the “boy cave”, more time to box, work on art projects, and more time cooking delicious meals together. Theo loves Luis’s cooking the best, and it shows! Theo has gained almost five pounds in the past month. Luis is like his personal chef. Making him any food at any hour: mashed potatoes, clams, soup, green beans, steak… you name it. The stronger, more nourished, and more active Theo is prior to transplant, the stronger he will be after transplant. Theo has the energy, focus, and behavior of a strong seven-year-old boy! What is going on?
Theo is in REMISSION. Yes, remission. The treatment was successful. So… why does he still need a bone marrow transplant (BMT)? The fact that his leukemia already returned once, means that there is a higher chance of it coming back, again. The BEST chance we have at beating his cancer for good, is a BMT. Bottom line, best outcome. Yes, I know. Even though he’s doing well. Even though he’s back in remission. Even though the intense dose of radiation, chemotherapy, and medications he will receive for the BMT all have harmful and destructive side effects. If the goal is to beat the cancer, then the answer is BMT (with side effects). During the consultation with Theo’s transplant doctor, the dam broke, and I just couldn’t hold back my tears anymore. I had been biting my lip for 45 minutes listening to how each organ in Theo’s body would suffer from some degree of damage. I could feel the anger and fear rising up inside me. I need to stay strong but it’s so damn hard! That’s when Theo’s doctor told me the one thing I needed to hear. Are the side effects scary? ABSOLUTELY. But what’s the alternative? LEUKEMIA. The side effects are not ideal, but they are better than having cancer. It was like I was being strangled, and then suddenly, the deadly grip of my assassin finally let go. It’s true. The most important thing we can focus on right now is this: beat the cancer. Focus on TODAY. Focus on what is happening NOW. Not what will be or may be happening six months, a year, or five years from now. Today we are smiling. We are laughing. We are dancing. Today is beautiful.
If you are meeting Theo for the first time, these are three questions he will ask you: Who is your favorite superhero? What is your favorite food? What are you having for lunch (or breakfast if morning) today? You might say that Theo is very good at icebreakers. He is an excellent conversationalist and loves meeting new people at the hospital. Sometimes, what should be a quick 15-minute provider visit, turns into 45 minutes, just because Theo is talking so much! Perhaps that is why he enjoys going to the hospital. He loves all of the people that care for him. They are more than just nurses and doctors. They are his family and friends, everyone. One day at Children’s Hospital recently, a long day with several appointments, we ran into many of Theo’s care providers throughout the day just while walking through the hallways. First it was the art specialist outside the gift shop. Then it was his physical therapist in the cafeteria. Then it was a favorite from the clinic check in desk who we saw ordering coffee. Each time he ran into someone he knew; it was like a celebrity sighting. They all stopped to talk to Theo, make him laugh, and listen to his stories. It made his day. He was like the kid who walks into school high fiving everyone; the hero. That’s a great feeling. Theo is shy around kids he doesn’t know. But with adults, especially at the hospital, he is Mr. Cool. Articulate, polite, and extremely funny and charming. So, when we talk to Theo about spending four to six weeks in the Cancer Care Unit for his transplant, he isn’t bothered. In fact, he gets excited to bring all his fun toys and games to play with the nurses. He looks forward to seeing Mike and Garrett, the art and gaming specialists, Kelsey, his teacher, and all of the other in-patient specialists that care for him.
At Children’s Hospital, Theo is surrounded by superheroes, extraordinary people who he admires and loves. But there’s one thing I have never mentioned before: most of them are women. In clinic, in the cancer care unit… women. I don’t know the exact percentage of woman and men who work at Children’s Hospital. But I do know that in the almost three years Theo has been receiving treatment, over 90% of his care providers have been women. Every morning in the cancer care unit during doctor’s rounds… all women. When Luis and I had our first consultation with Theo’s existing team and transplant team, the room was filled with doctors, nurses, specialists, and coordinators. We left the room and immediately noted, Luis was the ONLY man in the room. WOW. When I was a kid, every doctor I knew was a man. Today, for Theo, almost every doctor he knows is a woman. Isn’t that incredible? They are superheroes, Captain Marvels and Wonder Womens. Well, now we are moving on to the next chapter in the Marvel universe. To Fred Hutch Cancer Center. Our new family awaits, ready to take Theo to the other side. A new chance at life. A rebirth.
Theo is scheduled to be admitted to the cancer care unit at Seattle Children’s Hospital on December 5th, 2022, for the start of CONDITIONING. He will stay in the hospital for four-six weeks. TRANSPLANT is scheduled for December 12th, 2022.
“Cooking should never be rushed. If you rush, it will turn out to be a mess.” – Theo Avila
One recent morning I met a woman in the elevator at Seattle Children’s Hospital. Theo was back in the cancer care unit. I was on my way down to the 3rd floor to get coffee. Elevators can be so awkward and uncomfortable sometimes. You’re just standing there in silence, trying to avoid eye contact with the people standing next to you. Maybe you look at your phone to avoid eye contact or maybe you give the stranger entering the elevator a nod or a smile. Maybe one of you initiates small talk to break the silence. I’m not one to start a conversation in an elevator. But here at Children’s Hospital, it’s different. When you see another parent wearing a “Caregiver” badge and you catch their eye… there is a moment of understanding. A moment of knowing their pain and their sadness. You can feel the weight they carry with them. You know they are not sleeping well, because they too, are sleeping on the pull-out bed in the hospital room next to their sick child. You know they are separated from the rest of the world and their families. Their life has been dramatically altered. You know that this was not the life they had planned for their child. You know that they are scared, too. I smiled at the woman in the elevator. The conversation began with a question. “How long have you been here?” It continued all the way down to the 3rd floor and through three long hallways. The woman told me that she has a 15-year-old boy with AML (a rarer kind of leukemia). He relapsed in July, 10 months after finishing his initial treatment. Shortly after re-starting treatment again with high intense chemotherapy, the boy’s brain started to bleed. Surgery was performed immediately. The woman thought she was going to lose her son. He was in the ICU for over a month and has since recovered. He is back on track to receive a bone marrow transplant later this year. Before parting ways, we wished each other our best and exchanged a look, without words, telling each other everything was going to be okay. I have heard several stories like this one. During many of my rides up and down the elevator. One nightmare after another. Most of them more horrific than I can imagine. Sharing our stories is a way for us to connect in this strange world we are living in. We are not alone. We are brave. We are strong. We are hopeful. Life is hard.
On Monday, September 12th, Theo had a lumbar puncture and bone marrow aspirate. For Theo to be eligible for the clinical study, the doctors must verify that Theo has less than 25% disease in his body prior to lymphodepletion. The results came back the next day and I received some good news. First, the spinal fluid came back negative. Second, Theo’s own healthy B cells (the cells that turn into leukemia cells) have the CD-19 and CD-22 tags. That’s good because those B cells are fuel for the CAR T-cells. Fuel to keep them active for months, killing leukemia cells with the exact same tags! Third, there was only ONE clone cell – out of ONE MILLION – found in his bone marrow!! That’s outstanding! It went from over 800 clones to 13 clones, now down to ONE. This tells the doctors that the treatment is working well, and that Theo is even closer to DEEP REMISSION.
Lymphodepletion began on Wednesday, September 15th and lasted for four days. The purpose of lymphodepletion is to reduce the number of healthy T-cells in Theo’s blood, so they do not compete with the CAR T-cells after infusion. On days one and two, Theo only received one chemotherapy drug. One he has never had before, called Fludarabine. On days three and four Theo received Fludarabine along with Cyclophosphamide. He has had that one before and it made him very nauseous in the past. Cyclophosphamide days are looooong days. About eight hours long. We came prepared with books, games, and snacks. Theo handled it so well. All of it. Never complaining, never making a fuss. He also handled the chemotherapy well. He only needed a dose of Zofran (anti-nausea) every eight hours and he never once felt sick.
September 20th, 2022. CAR T-cell infusion. We were ready, we were excited. Ok, so where are the fireworks? What, no mariachi band to serenade the cells going in? Come on, shouldn’t there at least be a cake with confetti? Actually, the process of CAR T-cell infusion is quite anti-climactic. But that doesn’t mean it isn’t something to celebrate. Science is AMAZING. We should always celebrate science. I think Theo would happily agree, as it is his favorite subject. Did you know that Spider-Man, aka Peter Parker, is a scientist? The fact that we can use our own cells and turn them into soldiers to fight disease is phenomenal. It only took four weeks for Theo’s T-cells to be re-engineered into CAR T-cells. Four weeks for them to grow with the CD-19 and CD-22 tags. Once ready, they were stored at negative 169 degrees F. Just before infusion, they get warmed up to body temperature. The total amount infused is only 0.8ml, but inside that 0.8ml are 24 MILLION CELLS!! The nurses monitored Theo for three hours after infusion to make sure he did not have any adverse reactions. It was easy, painless, symptom free…. well at least for a few days. Symptoms related to Cytokine Release Syndrome are expected to arrive around day 5-10 post infusion. We were thoroughly warned several times by many doctors to expect a fever during that time and maybe even something worse.
Theo was seen in clinic every day after the infusion. There was nothing to report. No changes, no fevers. Theo was feeling great for the first four days. One doctor called this “the honeymoon period”. Is it possible Theo might not ever have symptoms? Yes, but very unlikely. Of course, they were right. And then came day five, post infusion. Like a car low on fuel, Theo just ran out of gas. He hardly ate his pho at lunch (that he had been asking for all week) and his energy level went way down. Just before bed on Sunday evening, I took his temperature. It read 99.2 degrees F. Oh no. It’s not a fever, but it’s close. And unusually higher than his normal. I packed our bags expecting that we would be heading to the Emergency Department (ED) sometime in the middle of the night. Sure enough, at 2am, I woke up and could feel that Theo was hot. His temperature had crossed the threshold at 100.9. Hotel Children’s, here we come!
We were in the ED for six hours. Theo’s blood pressure was very low, and his heart rate was very high. He also developed a horrible headache on our way to the hospital. The doctors did not want him to leave the ED until his blood pressure and heart rate normalized. At first, they thought it was from dehydration. Doubtful. Theo drinks a minimum of 50 oz of water a day just to swallow all his pills. That doesn’t even count the amount water he drinks without pills. This is how one doctor explained it to me: During an aggressive immune response, the body releases chemicals, called cytokines. All of these cytokines can cause the blood vessels to become wobbly and inefficient at getting blood through the body. As a result, the blood pressure drops, and the heart rate increases. An increase in fluids helps the blood vessels firm up and become efficient again. So even though Theo wasn’t technically dehydrated, he needed a lot of fluid. By 9am we were finally taken to our room in the cancer care unit on the 8th floor. For the next 24 hours Theo’s body fought a high fever and a pounding headache. 48 hours later, once the fever and headache were gone, came the neurological toxicities. We first noticed it during a visit with physical therapy. Theo was suddenly walking into things, stumbling and acting confused. He was in a daze. Unable to finish his thoughts or focus on daily tasks, like washing his hands. He seemed… lost. Another sign was his shaky handwriting. Not only had he forgotten how to spell words (like Spider-Man) but also how to write some letters! Doctors performed routine mental exams on Theo multiple times throughout the day and started him on an anti-seizure medication for prophylaxis. It was a very scary and unsettling couple of days to see Theo not be himself, to act so strange. According to Theo’s clinic doctor, his symptoms were MILD. What?!? I do not want to know and hope to never see what moderate or severe symptoms look like. Fortunately, Theo has not shown any more signs of neurological toxicity. He is back to building Legos, making Spider-Man comics, and just being his usual wonderful self.
We were discharged on Friday, September 30th at around 5pm. It felt so good to leave the hospital. We were finally going to get a good night of sleep, no interruptions. Or were we? You are not going to believe this. At 8:30pm, I checked Theo’s temperature because he felt hot. No. It can’t be. This is a trick, right? His temperature was 101.7 degrees F!!! But we were just there! How can this be?? Well, like it or not, we had to go back. Back to the ED until 3am, when a room finally became available in the cancer care unit. Theo’s symptoms were just like before. Fever, low blood pressure, fast heart rate. Turns out those CAR T-cells were still hard at work. At least the fever was not from an infection or virus! It was a rough night, but Theo got through it just fine. He always does.
Presently, we are still in the cancer care unit. Theo has not had a fever in 24 hours, but we are in no rush to leave. Fool us once, but don’t fool us twice! We’ve spent more than enough time in the ED this month. We’re happy to stay in the hospital for a few extra days just to be safe. After Theo recovers from CAR T-cells we have nothing else until conditioning. Really, there is no other treatment scheduled for about five weeks! That’s five weeks of Theo feeling good, because he is in remission and NOT neutropenic! We made it over another hurdle. Time to celebrate immunotherapy success and a happy boy ready for Halloween! I must say, had it not been for such thorough and clear communication by Theo’s incredible team of doctors, this experience would have been so much worse. Since we signed up for this clinical study, we were prepped on everything that could and would likely happen. They made sure we were well informed and prepared. But will we ever feel prepared for the transplant? I’m not sure.
The estimated date for Theo’s bone marrow transplant is November 22nd, 2022. We met with the lead doctor of Theo’s transplant team again during lymphodepletion. We were anticipating something awful, bracing ourselves for the earthquake that was about to shake the room. The first time we met with her, we received a long lecture of all the horrible possible side effects from a bone marrow transplant. This time, it was a lecture about all the things that could go wrong leading up to the transplant. What if Theo gets a cold? What if the ONE donor that is a perfect match backs out or gets sick? What if the airplane carrying the bone marrow crashes on its way to Children’s Hospital? Wait, what?!? No seriously, she said that. So, then what? Ohhhhhh… no worries, they’ll just use cord blood instead. Excuse me, what did you say?!?!? The longer we listened the more agitated and confused we became. Suddenly it felt like we were on the airplane about to crash! Luis finally pulled the emergency break. STOP!
We needed a moment to calm down and breath. What is cord blood and how is it different? Can we hear some examples of when things like this have happened and the success rate? Give us some positive data please!! Turns out, there’s plenty. We just weren’t hearing it. But ask and you shall receive. Cord blood is the blood that comes from an umbilical cord. It contains stem cells that are used for transplants. It is not the standard of care to use cord blood for bone marrow transplants, but it also has a very high success rate and is used often. Fortunately, it is always available and a very good back up option if needed. If Theo gets sick, then he gets sick. Treatment may be delayed, it happens. We will do everything we possibly can to keep him safe and keep germs away, but that does not guarantee anything. It’s easy to focus on the negative when that is all you hear. We have not forgotten that bone marrow transplants have been happening successfully for decades. That Theo is not the first nor the last child to go through this. That Theo is in excellent care, the very best! But there is one very important thing we did forget. Treatment is FLUID. There is not ONE path. There are many, and we have to learn to adjust when things change at any given moment. Theo is the strongest, bravest, sweetest, most positive kid I know. He moves with grace and ease through treatment. Like a true hero. There are so many variables we cannot control. But what we can control is our attitude. We can prepare ourselves by being alert, staying positive, and packing some extra courage. If we get a flat tire along the way, we trust that the doctors know what to do. And if I ever get scared again, I will remember Theo’s words…
“We can get through anything as long as you, me, and papa are together.” – Theo Avila
“Every problem has an opportunity for something good. You just have to look for it.” Yamada, K. (2016) What Do You Do With A Problem? (M. Besom, Illus.). Compendium, Inc.
Sounds easy, right? Turning something bad into something good. Finding the happiness in a maze of sadness. Staying calm in a storm of chaos. It’s not easy. It takes a lot of hard work, focus, and practice. I’m not there yet, but I’m working on it, one day at a time.
One week home turned into two, which turned into a month, and more. We’ve had a few short stays in Seattle for some of Theo’s appointments. But his doctors keep giving us the green light to go home to Kingston again. Initially we were told that we might have a small window of time in between treatment when Theo will be healthy enough to be at home, farther away from the hospital. Obviously, nothing is ever set in stone when it comes to the treatment plan. It all depends on how Theo is doing. Is the current treatment effective or do we need to change course? Is Theo tolerating treatment or do we need to take a break? So many “ifs” and “we’ll see”. So, when his doctors told us it was safe for Theo to be home, we did not get our hopes up. If a week was all we got, then that was great, better than no time at all. We never expected to have this much time! Whenever Theo and I have to head back to Seattle for an appointment, I pack our bags for a seven month stay. You never know, right? Is this it? If Theo gets a fever, we might end up in the cancer care unit for a while, days, maybe weeks. Well, needless to say, we’ve had a few changes, some delays and interruptions that have allowed us to be home, together as a family longer than expected, during the most beautiful time of the year. A sublime summer vacation.
On Friday, August 5th, Theo had a back poke with chemotherapy and a bone marrow aspirate. Ready for the results? The flow test came back negative. ClonoSeq was even better. It showed only 13 markers for disease out of one million cells! That’s an MRD of about 0.0013%. Let me remind you that the last time they checked his bone marrow the ClonoSeq results showed 813 markers out of one million cells. That’s an MRD of about 0.08%. Incredible. That’s a huge improvement and small victory to celebrate.
We signed the consent for the Seattle Children’s clinical trial (PLAT)-05 for T-Cell Immunotherapy on Monday, August 8th. When we found out that insurance was not going to cover KYMRIAH to be done at Seattle Children’s Hospital, we were livid. But then (PLAT)-05 suddenly became an option. We were so confused. Why was this suddenly an option and is it safe? Hearing words like “we do not know the dose” and “experimental” over and over again did not make it sound safe. The room started closing in around me and a pit grew in my stomach. As Luis likes to say, “It feels like I went in to buy a Mercedes and left buying a used Kia”. It should be made clear that these clinical trials are not a back-up option to the FDA approved KYMRIAH. In fact, Theo’s doctors believe that (PLAT)-05 is a better option of treatment for Theo because it is more effective. Why had we not been informed of this before? (PLAT)-05 just wasn’t available when they were initially considering CAR T-cell therapy as a treatment option. Theo’s doctors believe Theo is an excellent candidate for this treatment. Oh man. Luis and I really needed to hear that. It made a big difference in our attitudes and changed our anger and fear into hope. An even greater reason to like this option is that the principal investigator of this study is Dr. Rebecca Gardner. Before she transitioned completely to research, she was Theo’s clinical doctor. We know her and we trust her. She was actually the one who reached out to Theo’s current team of doctors and made the recommendation. I’m feeling much better now, how about you? We had the intention of doing apheresis the next day, Tuesday, August 9th. Unfortunately, Theo’s liver function was too high to start. One of the side effects of that triple chemo back poke he had the Friday before. His ALT (liver function) was above 300. It must be below 200 in order to do apheresis. Theo’s doctor thought maybe a bolus or two of fluids might help bring it down. Nope. How about one more bolus the next day? Still no. We were sent home with instructions to return the following week on August 16th, when Theo’s liver function would most definitely be under the threshold level. Another week to enjoy being home? We’ll take it. We asked Theo what he wanted to do when we got home. His answer: go to work with Papa! He was so excited the night before going to the office that he said he barely slept. Luis and Theo are twins inside and out. Two old loving souls.
Apheresis is the process of extracting blood plasma from the body, separating the white blood cells from the plasma, then returning the blood back into the body. The T-cells (white blood cells) that are collected are then sent to a lab to be re-engineered for immunotherapy. It takes about four weeks for the new T-cells to grow and be ready for infusion. With Theo, apheresis took a total of about four-five hours for the entire process of collecting the T-cells. Theo’s doctor, knowing that this therapy was likely in his future, put in the order for Theo to have a double lumen Hickman line this time around, instead of the power port, like he had last time. One lumen carries the blood out of his body, while the other lumen is used for the return of blood. The entire process is pretty easy and straightforward. In the last 30 minutes Theo had some sudden nausea and feeling lightheaded from the blood loss, but that is expected. What’s next? What do we do while we wait for the new T-cells to grow? Here’s an idea: Hernia repair surgery!!
We found out Theo had a hernia in early 2020, shortly after he was first diagnosed with leukemia. Urology wanted an ultrasound to evaluate his testicles prior to the start of chemotherapy. There it was. We were told it was on the large size and should be repaired soon after the end of therapy. Fortunately, the hernia never bothered Theo or caused him any discomfort. The most visible sign of its existence was the fluid leakage down into his right testicle. Sometimes, when Theo received a lot of fluid, it would fill up like a water balloon! It needed to be repaired… soon! Definitely before transplant. This waiting period was the perfect window. Only one problem. Theo developed a cough. Oh, come on!! Really?! That darn cough. We thought for sure it would throw a wrench in our plans. Thank goodness, with the help of twice daily albuterol, Theo’s lungs stayed clear and the surgery to repair the hernia was completed as planned on Thursday, August 25th. The surgery went well, no complications. Theo only needed Tylenol and Ibuprofen for the first 24 hours and then he was fine. He was moving about as if nothing had happened. We were shocked at how easy it was and how fast he recovered. What a relief! We could finally check that one off the list and go back to focusing on treatment.
Buckle your seat belts everyone. I was just informed that Theo’s new T-cells have finished growing and are ready!! On Monday, September 12th, Theo is scheduled to have a back poke and aspirate to check MDR. The rest of the week he’ll be receiving more chemotherapy to reduce the number of existing T-cells in his blood, called lymphodepletion. It is important that when the new T-cells are infused, they do not compete with Theo’s own T-cells. So, his immune system is weakened just enough to lower his white blood cell count. INFUSION is scheduled for Tuesday, September 20th. It is both exciting and terrifying at the same time. We are finally doing this. But holy crap, we are doing this. This immunotherapy has the potential for some very serious side effects. Cytokine release syndrome being the most common. Therefore, Theo will need to be monitored closely. He will be seen in clinic EVERY DAY after infusion, with the expectation of a fever to appear sometime between day seven and ten following infusion. You know what that means: we’ll be checking into Hotel Children’s. Don’t worry, I’ve already reserved the master suite. After Theo recovers, we wait for the arrival of Theo’s transplant team, with the newly unified Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center. Now called the Fred Hutchinson Cancer Center.
We have already met once with the lead doctor of Theo’s transplant team. Remember how that went? Not well. It was like we were invited to a friend’s house for dinner, and they served us sour milk. Well, now we know, and we’ve had some time to digest all the possible complications. On August 17th, Luis and I had a consultation with the radiation oncologist at UW to learn about the radiation Theo will receive during conditioning. We were expecting another serving of sour milk. To our pleasant surprise, it was much better. The doctor was direct but also very positive. He took time to ask us questions and gave us several examples of patients that he has treated in the past who are healthy today. He did not just ramble on about all the horrible side effects of radiation (though there are many). Will Theo have side effects? Yes. With some, we know what to expect. With others, it might take years or decades for the side effects to show up. He broke it down like this: Theo will receive a dose of 13 gray. Receiving radiation is not painful, it will not burn. Immediate side effects are nausea and fatigue. He expects Theo to have cataracts. Not next year, but likely later in his life. Ok, lots of people have cataracts and they are easy to treat. He expects Theo’s growth to be slightly delayed and that he will not reach the full height that he would have, had he not received radiation. We’re talking inches, not feet. He will be infertile. It’s possible he may not make testosterone, but there are replacement hormones that are very effective. His bones will not be as dense so he will have to avoid playing high contact sports like football and rugby. Theo will have an increased risk for developing other cancers and tumors. Most of the tumors that patients develop after radiation are benign. The dose of radiation to Theo’s head and brain will be slightly higher. Theo may have some cognitive delay. He will have cognitive tests done every year to track his cognitive function. Now get this. Age is a HUGE factor in how severe the effects of radiation can be. Had Theo received the planned amount of radiation to his brain as a four- or five-year-old, it is likely he would not have been able to live independently or even hold a job as an adult. Fortunately, as a seven-year-old, the effects will not be as strong. The doctor went on to give us several examples of patients who have lived on to study medicine, become valedictorians, and receive scholarships to top colleges around the world. That’s right. My boy will be just fine.
Theo is the master of positivity. A pro at turning any gloomy day into paradise. He is already so much more evolved than I ever was as a seven-year-old. So much so, that he has a black belt!! Luis and could not believe it. Theo’s martial arts instructor had the idea to present Theo with an honorary black belt a few weeks ago. He is an incredible teacher, a hero to Theo. For him to come to our house and present Theo with such an amazing gift… it just made my heart explode. It is a day we will never forget. Thank you, Sifu Rick. Theo will be back on the mat one day, stronger than ever. There are so many moments when Theo is my teacher. While making a peach pie together, my bottom crust started to collapse in the oven. I started to panic. Theo came to my rescue and said, “Mama, it’s ok. Not every pie is the same.” Such a wise thing to say. Where did he come up with that? A couple of days ago, I was frantically swatting at a cluster of mosquitos that were buzzing around by the window. Theo laughed and told me, “Stay calm. Don’t be so frantic and then you will catch the mosquitos.” He was right. Every time I start to lose my cool and feel overwhelmed, it is Theo who reminds me to slow down and take a deep breath. Try it. Close your eyes. Take a slow deep breath in. Imagine your problem standing in front of you. When you exhale, imagine your breath blowing your problem away. Whatever is bothering you or making you feel frustrated. Take a deep breath in and blow your frustration away. Far… far…away… Now, with a calm mind, maybe you can see something good.
A warm breeze, the morning sun, a fresh cup of coffee. I am sitting under the maple tree in our front yard with Luis, my love and best friend. We are all home in Kingston for the week. It is our first summer morning sitting together, looking at the trees, listening to the birds, and watching as they swoop down to our bird bath and take a cool sip of water. Luis tells me that recently, we have had a regular visitor to our bird bath. A dove. He comes every morning and evening. We hear him call out from the trees across the street, alerting us to his presence. A sound that brings us peace. Today, he has brought a partner, another dove. Together, they fly over to our maple tree and greet us before they glide down to the bath. Two beautiful doves. For the first time in over a month, I feel calm.
“Welcome to the first day of the rest of your life.” This is what one of Theo’s doctors said to us when Theo was first diagnosed back in 2020. After Theo completed treatment in January 2022 it felt like it was over, we had won the battle and Theo was healthy. Cancer free, moving on. It was a thing of the past. This time is different. This is forever. Not the cancer, but everything it carries with it. The medications, side effects, complications, and treatment. The fish never stops flopping around in my stomach. It’s the pain of knowing what Theo will go through, worse than before. And just waiting for it to happen, like a bad car crash. Waiting to find out how bad it will be. How sick will he get, what damage will be done? Is there an end to this journey? And if so, what does the finish line look like?
We have a plan. A very hopeful yet incredibly terrifying plan. In the last three weeks, Luis and I have had to swallow and digest a very onerous load of information. It’s added some noticeably heavy weight to our minds like a dark cloud following us around. There is no escape, no shelter from the storm. Life is hard. We take it, like a pill. It’s hard to swallow but we do it and keep going. Then I remind myself: What kind of mother does Theo need me to be? What kind of wife do I want to be? Loving, positive, patient, focused, brave, courageous. So… here we go.
When I last wrote, Theo was back in the Cancer Care Unit. He tested positive for rhinovirus. It was causing high fevers almost every night along with another wicked wet cough. That dang cough. Every time it starts to fade, and we think it’s finally gone, another one jumps up, and it starts all over again. Theo stayed in-patient for one week. On Tuesday, July 12th, we received good news that his bone marrow sample came back negative. The flow test (a sample of about 10,000 cells) did not detect any leukemia cells in his bone marrow, which means… Remission! That also means that Theo is no longer functionally neutropenic. His immune system is functioning as it should. His neutrophil count was high, so even though Theo was still having fevers, the doctors let him leave the hospital, knowing he had a strong enough immune system to fight off the rhinovirus. Another test, called ClonosSEQ, was done on July 18th. It takes a deeper look at the bone marrow (a sample of about 1,000,000 cells) to look for sequences and patterns that are similar to developing leukemia cells. Please do not ask me to explain more beyond this. I have tried to understand these test results as best as possible. My head is spinning already! Based on the ClonoSEQ results, the estimated MRD value is 813 clonal cells per million nucleated cells. In other words, those are 813 markers for disease. Didn’t I tell you leukemia cells were sneaky?
Remission. Although it is exciting, remember that the goal is DEEP remission. Theo was still having positive back pokes. Leukemia cells are still present in his spinal fluid. Theo’s disease seems to be resistant to the chemotherapy being used in his back pokes and therefore ineffective. How do we get to deep remission? How do we eliminate the disease in his CNS?
First step, high dose methotrexate. On Tuesday, July 19th, Theo checked back into the Cancer Care Unit. The high dose methotrexate runs through an IV for 24 hours. Theo must clear the methotrexate before he can be discharged, which can take anywhere from four to six days. To help clear it, Theo was hooked up to heavy fluids 24/7, making him pee every two to three hours. He had to take sodium bicarbonate pills every six hours to prevent his pee from becoming too acidic. He also took leucovorin, a medication in pill form that helps clear methotrexate, every six hours. Needless to say, Theo did not get a lot of sleep during this treatment. He was constantly woken up. Either to take pills or to walk with the IV pole to the bathroom so he can go pee in a plastic urinal. Theo cleared the methotrexate in four days, and we left the hospital on Saturday, July 23rd. The second step was the addition of Disatinib. Sound familiar? Wait a minute… it almost sounds like Imatinib! In fact, it IS similar to Imatinib. It penetrates into the spinal fluid attacking leukemia cells with the Philadelphia chromosome. The third and final step to get Theo into deep remission is CAR T-cell immunotherapy. Theo’s T-cells (white blood cells that fight infection) are first extracted from his blood, a process called, apheresis. Those T-cells are then re-engineered in a lab to have Velcro-like tags that attach to the leukemia cells. Basically, like Pac-Man, they seek out and destroy cancer cells. Each leukemia cell has two tags: CD-19 and CD-22. It is important that the CAR T-cells attach specifically to those tags. Pretty incredible, right? Using the body’s own immune system to attack the leukemia! There you have it. Three steps to get Theo in deep remission. Theo was all set up, consent form signed and ready to go for apheresis on Tuesday, August 2nd. The only thing we were still waiting on was an approval from insurance.
On Friday, July 29th, Theo’s doctors sat down with us to deliver some upsetting news. Theo’s insurance, Cigna, DENIED COVERAGE FOR KYMRIAH, THE FDA APPROVED CAR-T CELL IMMUNOTHERAPY. WTF? Are you kidding me?!?! Everyone is shocked, upset, LIVID. Seattle Children’s Hospital has teams of people fighting insurance companies on a daily basis to get treatment covered for sick children. Theo’s doctors spend hours on the phone answering questions and responding to them with detailed letters about treatment daily. How is this legal?? That an insurance company can determine what treatment a sick child can and cannot receive?? How dare they. They do not know Theo! They think they know what is best for him?? Why do they have the right to tell me and his doctors what is medically necessary? This is wrong on so many levels. One of the biggest jokes of the American health care system. When a child is diagnosed with cancer, the ONLY thing an insurance company should say is, “YES” to treatment. Cigna will only approve the CAR T-cell therapy if it is done in San Diego, at a hospital that has affiliation with Cigna. Oh, how convenient for them! Theo would have to spend two months in San Diego while receiving the therapy. Of course, Cigna would not cover any of our expenses to go there. So why San Diego? Well, let’s think. It’s obviously cheaper for Cigna to have Theo go to this hospital in San Diego. Insurance companies don’t care about what is best for a patient. They care about the cost!!! I have been fuming about this for days. Anger on top of sadness on top of fear.
So now what? If the recommended treatment is CAR T-cell therapy, then that’s what Theo will get. There is another option. Seattle Children’s Hospital is re-opening clinical trials for a CAR T-cell therapy. It was not brought up before because the trials have been closed. Theo’s doctors informed us that the trials were scheduled to re-open soon. They believe that this will be an effective treatment for Theo. It is very similar to KYMRIAH. There are only two differences. One, this therapy is not FDA approved. However, there has already been a lot of success with other patients who have received this therapy. Second, unlike KYMRIAH, which only makes tags on the CAR T-cells to attach to CD-19, the therapy in clinical trials makes tags that attach to BOTH CD-19 and CD-22. That makes it a more effective and longer lasting therapy. The side effects are also expected to be the same. Still incredibly scary… but the same. The most common and likely side effect is cytokine release syndrome. The infusion of CAR T-cells causes the immune system to go into overdrive. Theo will be seen every day in clinic following infusion, on high alert for symptoms like fever, low blood pressure, dizziness, severe nausea, and neurological toxicities. The question is not IF he will have side effects, it is more like, HOW SEVERE will they be? Theo’s doctors expect Theo to be admitted to the cancer care unit at some point following this therapy. Hopefully it will be mild and for only a short period of time.
Theo’s bone marrow will be checked (MRD) two days before apheresis and again at day 28 and day 61 following infusion of CAR T-cells. At that time, we hope to have established a deep remission. On Tuesday, July 26th, Luis and I met with the lead doctor on Theo’s transplant team. We had our first official consultation about the transplant and the steps leading up to it: the arrival and conditioning. Where to begin? The arrival. That is when Theo’s care is officially transferred to the Seattle Cancer Care Alliance. Theo will have a new team of doctors, that specialize in caring for transplant patients. He will need full body testing done, which takes about two weeks. Everything from his heart to his cognitive function will be examined to collect data on his health prior to the implant. Then he will begin conditioning. Conditioning is basically wiping his body clear of… everything. A clean slate. No immune system, no cells being produced in the bone marrow, nada. Theo will receive full body radiation and high intensity chemotherapy. All I know about radiation is that it kills everything. This is the scariest part for me. It terrifies me to think of it. Watching my baby boy’s body become so depleted, sick, and weak. Theo will lose his ability to make sperm as well. There is about a 98% chance he will become infertile. Up until this point, Luis and I have been too scared to ask about Theo’s fertility. Now we know. It’s cooked. The consultation was horrible. Nothing like what we were expecting. Luis and I sat down and listened to the doctor go on non-stop for AN HOUR about all the horrific things that can possibly go wrong before, during, and after transplant. She listed all short term and long-term side effects. Growth delays, cognitive delays, severe organ trauma, transplant rejection, risk of infections, and on and on. So, there we were. Sitting quietly, digging my nails into my skin, holding back tears while we listened to the small print at the end of a drug commercial. HEAVY. Not a conversation Luis and I were ready to have. All of it. We just weren’t ready. Deep breath. One day at a time. We still have a way to go.
This is the part now, where I remind myself and all of you that Theo is a superhero. That he is the kindest, strongest, funniest little human being I know. A powerful and positive ray of sunshine. One day, while in the cancer care unit, Theo was making his way into the bathroom with “Beep” the IV pole. Beep’s wheel rolled into his toe. Theo got upset and yelled at Beep. Immediately after, Theo apologized to Beep and said, “I’m sorry, it’s not your fault. I’m just frustrated because I don’t want to be here.” Theo is such a wise soul and loving human being. I believe in Theo. I believe in his doctors, and this treatment. I believe in us. Luis reminded me that it’s important to celebrate the little wins. There will be many battles, some harder than others. We will keep moving forward, smiling, no matter how hard it gets. Theo is not the first, nor the last person to go through this. We are not alone. Who knows what the future holds? Medicine is changing, advancing faster every day. People break through medical barriers all the time. We have friends and family that have proved doctors wrong. Walked when they were told they wouldn’t. Had kids when they were told they couldn’t. Lived long, when they were told their days were short. Miracles do happen and a 1% chance is still a chance! We never give up hope. For the past ten days, Theo, Luis, and I have been home together in Kingston. It has been beyond wonderful. We have been squeezing in as much summer fun as possible. It has been a time for us to recharge. Listen to the doves, smell the salt water, and bury our toes in the sand. A time to remind ourselves of our strength and love. A time to appreciate the things that really matter in life. Family, our health, and mashed potatoes.
“My favorite thing about being in Kingston this week has been being with my family.” – Theo Avila
“It’s the cold fish dying in your stomach feeling. You try to forget about it, but as soon as you do, the fish starts flopping around under your heart and reminds you that something truly horrible is happening.” (Ozeki, 2013, p.180)
Since Theo relapsed, I have been at war with my emotions. Like a bubbly cheerleader I tell myself to stay positive, it could be worse, Theo is strong and in great care, we’ve got this! While deep inside I am terrified and heartbroken. I feel cheated and angry, and I want to scream!!! But what good would that do? What’s the point, really, of being angry? It only hurts the ones I love. What kind of mom does Theo need me to be? What kind of wife do I want to be? Every day gets a little bit better, and I tell my darkest emotions to go away. I unthink them, I silence them. Or at least I try. Some days it feels like there are 50 fish flopping under my heart. But… I MUST remind myself that it is okay to not be okay. I am not alone. I am just another person struggling, another broken heart, feeling pain like so many others. I am not special or unique. Life is HARD.
I am not okay… and that’s OKAY.
On June 22nd, Theo was discharged from the hospital. Or as I like to say, we checked out of Hotel Children’s. It came as a huge surprise because we were told initially that Theo would be in-patient for at least one month. It had been only two weeks! Theo was making great progress right at the start of treatment. His peripheral blast count had gone from 47,000 to 212 in only three days. When those cells rupture, they release uric acid and other toxins… so you can imagine how hard his body is working to get rid of all that waste! Theo was drinking about 60oz of water a day. More than enough to be unhooked from the IV pole and taken off the fluids. Theo’s blood counts also looked good. He did not need any blood product, his liver and kidney function were stable, and his ANC was 1,400. Theo was so relieved. After 14 days of being in the hospital, he was finally going to get some fresh air. Discharge came just in time. Two days earlier, Luis tested positive for Covid. Theo did NOT test positive, thank goodness! That was the last thing we needed to interfere with his treatment plan. However, per hospital protocol, Theo and I were put in strict quarantine for 10 days. That means that I could only leave the hospital room one time per day, and I was not allowed in any of the community spaces in the hospital (e.g., Starbucks, Family Resource Center). Theo was not allowed to have any other caregivers stay with him and no visitors from within the hospital, such as tutoring, gaming specialist, music and art therapy, and physical therapy. Not to mention, we couldn’t see Luis for 10 days!! As if this wasn’t hard enough already. Now, our family is separated, sick, and in limbo. The next 10 days were going to be brutal. Fortunately, we escaped just in time.
Waiting to be discharged is like waiting to deboard a 20-hour flight that has just landed but taking forever to get to the gate. As soon as I hear “discharge” I’m like the passenger standing up waiting to grab my bags as soon as the plane is done taxiing. Ohhh, but there is still so much to do. It doesn’t matter how many times we’ve been through this before. This is like starting all over again, except now, Theo is even more high risk than before. I was even given the family binder, brand new, full of all the information on how to care for a child with leukemia. Ugh, I just wanted to barf when I saw it. I get it, it’s required. They have to go over everything. And they know this, so the discharge nurse began every sentence with, “you probably already know this but…” Well, turns out I do not know ALL of it. There were a few new skills I needed to learn. A nurse from Home Care Services trained me how to flush Theo’s central line with sodium chloride and heparin, which has to be done daily. I also learned how to change the caps on his central line as well as change the dressing covering his central line, which is done once a week. Then I was given two large boxes full of materials to do all these tasks at home. Could we handle all this? Did we feel comfortable going home and giving Theo his meds? Two and a half years ago I was probably dizzy and sweating from trying to keep up with all the information. Not this time. Can we handle this? As Theo would say, “like eating a bowl of mashed potatoes”. Heck yes, now can we please leave?
Theo is back to taking a long list of medications every day. Sometimes up to 10 pills in the morning: Vit D3, levofloxacin (antibiotic), ursodiol (liver protector), bactrim (antibiotic), Noxafil (anti-fungal) and lisinopril (heart protector). He had been taking allopurinol as well, to reduce uric acid levels, but no longer needed it. The third round of Inotuzumab was scheduled for the following Monday, June 27th, and a 3rd back poke the next Tuesday, June 28th. Until then, our only plan was to get outside as much as possible. Lucky for us, summer weather had finally arrived. The only thing missing was Luis!! He had to stay away until he tested negative for Covid. Kingston, our dogs, our house, are all patiently waiting for our return home when Theo is stable enough. It’s great to be outside, but we are not together. I miss my family being together, all my lovies.
We arrived at Theo’s appointment on Monday, June 27th, ready for the next round of Inotuzumab. Only one problem: Theo’s liver function was way too high. A sign of a very irritated liver, which, if continued to be irritated, can lead to liver failure. The Inotuzumab was cancelled, and some changes were made to Theo’s medications. They told us to hold off on giving Theo his bactrim (antibiotic) until further notice. Theo also needed to go back to receiving Micafungin, an anti-fungal medication that he was given through his central line while in-patient. When Theo was discharged from the hospital, they switched the medication to a pill form, called Noxafil (generic name: posoconazole). Unfortunately, it is harder on the liver and can cause a lot of irritation. Treatment leading up to and following a bone marrow transplant puts Theo at risk of fungal infections. Needing the IV Micafungin at home daily meant – you guessed it – more training for me! Another training visit from Home Care Services and another big box full of supplies and we were set. Another box to check off on my list of daily meds to give Theo.
On Tuesday, June 28th, Theo had a lumbar puncture (back poke) of methotrexate, hydrocortisone, and cytarabine, just as planned. It was his third back poke with chemotherapy. At that time, he had a peripheral blast count of zero. However, the blast count in his spinal fluid was still getting readings of 12-18. The goal is to have three consecutive back pokes where the spinal fluid has a blast cell count of zero (aka negative). We did not have one negative result yet. Well, turns out third time’s a charm! The result from his third back poke on June 28th was finally negative! Theo is scheduled to have two more back pokes, which will also (finger’s crossed) be negative.
Cytarabine… hmmm, ring any bells? It’s a chemotherapy drug that Theo has had before. Now he gets it along with methotrexate and hydrocortisone with his back pokes. One thing I remember about cytarabine is that it gave Theo fevers and headaches every time he had it. Well, wouldn’t you know it. Theo had splitting headaches following the June 28th back poke. The headaches were positional, meaning he felt them as soon as he sat up, coughed, or moved his head around too fast. Positional headaches are a common side effect of back pokes. When a needle makes a hole into the spinal fluid, fluid can leak out and create pressure from the misplaced fluid. Taking a caffeine pill immediately after the back poke helps constrict the blood vessels to prevent fluid leakage. We will find out soon, after his next back poke, if it works. Theo also spiked a fever on Friday, July 1st, which landed him back in the cancer care unit. At least his room was on the 8th floor with views to Lake Washington and the Space Needle. We might not have been roasting marshmallows on the 4th of July, but holy smokes, we had one of the best views for watching the fireworks from his hospital room! On Monday, July 4th, he finally got out of his bed to play. His appetite was slowly coming back, and he was feeling much better. I could see it in his eyes, the energy returning to his body like a battery recharged. He was ready to do something… anything! He was like a superhero who, just after discovering his powers, needed to release them. But how? It’s beautiful outside and we’re in a hospital room. We tried it all: punching, dancing, kicking, a pillow fight! It was not satisfying him, and at end, he just sat by the window looking outside and said, “I wish I could punch through this window and go outside.” Soon my love, very soon.
On Tuesday, July 5th, we were discharged. Theo had a back poke, followed by his third dose of Inotuzumab in the morning. It had been two days without a fever, and he was drinking plenty of water. Unfortunately, the results from the back poke that day came back positive. I swear I can always tell when the doctor is about to deliver bad news. Their eyes say it all. I know these doctors well by now and they know us. They are the most incredible, caring, intelligent, hard working people. I know it breaks their heart, too when the treatment is not giving us the results we want to see. We are back to Theo needing three consecutive negative back pokes. On the upside, we got to leave the hospital.
JUST KIDDING!! Wait, is this some kind of bad joke?… Well, it is true, we were discharged, as planned on Tuesday, July 5th at around 5pm. Theo’s vitals and blood counts looked good, but he was definitely feeling out of sorts. Grumpy, tired, loopy, indecisive, just very emotional in general. It had been a very busy day with chemotherapy, meds, and anesthesia, so it made sense that he would not be feeling like his normal self. Before bedtime he complained of being very cold and couldn’t wait to get warm and cozy under the covers. Ugh, that is not good. Chills is usually a sign that a fever is on its way. Sure enough, at 1am Theo woke up with a temperature of 103.8F. CRAP!! Eight hours after being discharged we headed back to the ED. At that point I was in full panic mode. My heart was racing as I drove us back to the hospital with the worst thoughts in my mind. After five hours in the ED, we were taken to our room in the cancer care unit. Our third room in the past month. Theo was having a terrible night. He threw up all over himself in the ED and was kept awake while nurses and doctors performed their usual exams, poking, sticking, flushing lines, giving meds… we finally fell back asleep at 6am. It is not clear what caused the sudden fever. But typically, when fevers come on suddenly like this, it is likely a fungal infection. Therefore, Theo’s doctors decided to add back on the other broad spectrum anti-fungal medication, Noxafil (posaconazole). Theo is what doctors call, “Functionally Neutropenic” meaning, he has neutrophils and a presence of an immune system, but it is not known how well the immune cells are functioning. Kind of like having fake neutrophils. Until it’s known what is going on in his bone marrow, it is assumed that Theo’s immune system is not functioning properly. So here we are, back in the cancer care unit again, back to passing the days, going loco, in our bubble.
I think back about two weeks ago, after we were discharged the first time. The heat wave came and went like a typical Seattle summer tease. You could see the classic first sunburns of the summer on every Northwesterners pale sun deprived skin (including my own). Theo and I beat the heat by having picnics, squirt gun and water balloon fights, and taking cool walks through the ravine in Ravenna Park. It was just a taste, but it felt so good. Like maybe we could have a fun summer after all, and maybe Theo won’t be in the hospital or in bed sick all the time. Maybe… maybe not. I MUST take advantage of every sunny summer day with Theo and Luis when Theo is feeling good. Be outside recharging, filling up our souls with sunshine. Be in the moment. Because this his is how it goes. In and out of the hospital like a yo-yo. Just when life is feeling good, Theo’s temperature starts to rise and puts us on edge. We don’t know how long the good feels will last or how long we will get to be together, outside. All of this, everything feels so familiar and yet so unfamiliar at the same time. It’s like I have been here before but in another dimension. I know the doctors, the routine, I even know my way around this hospital better than some of the staff. The medications, blood counts, symptoms and side effects are nothing new. But when it comes to the larger picture… the transplant… THETRANSPLANT. We don’t even know what’s happening next month!! What is the plan?? I am clueless. The unknown sends my emotions back into battle. I feel like I’m walking towards a cliff blindfolded, waiting for my foot to drop. I take a deep breath, close my eyes, and enter a place of nonthinking. I breathe and count and just be in a moment of nothingness. My zazen.
Two weeks ago, I was going through my notes in preparation to write a new blog entry. It had been, gosh, at least two months since I had given an update. I had all my detailed notes with dates and times from his visits with urology, cardiology, and monthly provider visits. Theo had been in and out of school with viruses and a wicked lingering cough for the past two months. He even went to the emergency room on May 3rd after four days of having a fever above 101.4F. At first his pediatrician thought it was pneumonia. It turned out to be the human metapneumovirus. It was like that all of April and May. One week at school, 10 days home sick. Just as he was starting to get better, he would get hit with something else. Swabs kept revealing one virus or another, which was expected for a six-year-old returning to school after a pandemic, right? Everyone is getting sick. Not just Theo. His blood counts on May 10th looked great. NO SIGN of leukemia. In the week leading up to his June 7th appointment, we started to become more concerned. Theo was lethargic, depleted of energy and asking to take naps during the day. He was sweating through his shirt every night and coughing… non-stop. Luis texted me on a Friday afternoon, “this is not normal. something is wrong”. He was right (Papa always knows). Virus or not, we believe it could have been the first real sign that something more serious was going on. But a relapse? No. Never.
Theo beat cancer. We celebrated; it was over. In the past, gone, moving on. So why am I here? Why am I talking to this doctor? Why am I sitting in this room next to the IV pole looking out this window? WHY AM I HERE??? I’m not here, this is not happening. We don’t belong here. This is an evil trick, a horrible lie. It’s over, we did it, Theo was free.
I don’t want to tell you, because telling you makes it real. I am half numb as I write to tell you…
the leukemia came back.
Don’t think… just sleep. This is not real. I am not here. Don’t think… just sleep. Don’t think… just sleep.
I didn’t want to write. But to be completely honest, I do not have the energy or time to write every family member and friend and reply to every email or text. Seven days later, I am ready to write about Theo. That’s why I started this blog in the first place, isn’t it?
WHY??? HOW??? That’s what you want to know, right? Isn’t that always the case. We so urgently ask the questions that often times have no answer. When Luis and I asked the doctors, their response was, “we don’t exactly know”. Not satisfied? Frustrated? Confused? Welcome to our world. Staying as calm as possible, we pressed for something more. Something that made sense to us. Didn’t Theo receive themost aggressive and intense treatment? Didn’t he go into remission? YES. But… there is no guarantee. There is no way to guarantee that every… single… leukemia cell is gone. Remember the bone marrow biopsy that was taken at the end of Induction phase? Stay with me. I’m going to take you back to the very beginning, back when we were first learning about all of this. Hopefully, it will shed some light.
In my post titled, 28 Days Later, there is a picture of Theo’s treatment roadmap (see above). After Induction 1B was complete, a biopsy of the bone marrow was done to reveal the percentage of leukemia cells still present. That percentage is called the Minimal Residual Disease (MRD) and is part of the risk assessment. There was less than 0.05%, which, put Theo in the standard risk group. From there, he moved onto Arm A, the more aggressive arm of treatment. Had his MRD been greater than 0.05%, Theo would have been on the path of receiving a Hematopoietic Stem Cell Transplant (HSCT) aka bone marrow transplant. Notice that MRD is not an absolute number, but a percentage. In other words, 0.05% is not the same as ZERO. Remission in that case, is not an absolute ZERO. It means that the number of leukemia cells is AS CLOSE TO ZERO AS POSSIBLE. Once Theo reached remission, he continued to receive a variety of intense chemotherapy cocktails in different phases to prevent the leukemia cells from coming back. With the goal being that the chemotherapy would wipe out everything, good and bad, multiple times, and only the good cells would grow back. Now that we’ve done some review, here is an answer that might make sense to you, because it makes sense to me (even though I am still in denial). Get ready for it…
It’s very likely and very possible that the leukemia came back because one or two leukemia cells remained. One or two incredibly stubborn S.O.B. leukemia cells somehow found a way to hide and survive all of the toxic, aggressive, intense chemotherapy that Theo had to endure for two long years. The painful truth of the matter is that it actually happens more often than you might think. In fact, 10-20% of people with acute lymphoblastic leukemia (ALL) will have a relapse within the first year following treatment. That’s a big number. So even though Theo’s treatment was a success, even though he went into remission, even though he completed therapy… one or two leukemia cells remained (probably).
Now, let me tell you how we found out. With risk for relapse being the highest during this first year, monthly lab draws to monitor blood counts are important. That’s the only way to know for sure that the cancer has come back. On Tuesday, June 7th, Theo and I went to the Hematology/Oncology clinic for his monthly lab and provider visit at Seattle Children’s Hospital. The appointment was carrying on as usual. After a quick poke in the arm to collect blood, the nurse checked his vitals, and we gave his provider an update on any symptoms or concerns we’ve had since our previous visit. We enjoy seeing Theo’s doctor while we laugh and chat about favorite new recipes, recent adventures, and of course, what trouble silly Bobo has been getting into. Everything was going well. And then… the blood counts came back from the lab. All it took was one look from Theo’s doctor. Her entire body changed. Her eyes spoke pain before her mouth. I felt it before she said the words, “There’s no easy way to tell you this…” as she was holding back tears. I wanted to stop her, yell at her, “Then don’t!! Don’t say it!!” But I already knew. It was too late.
What did she see? How did she know? Theo’s white blood cell count was 55,000. Blast count was 42,427. Blasts are immature cells made in the bone marrow that never mature. An obvious sign of leukemia when found in the peripheral blood. Those two numbers, that’s all the information she needed to know that the leukemia had returned.
What happens next? What is the plan?? So many questions, I know. I’m going to make this as simple as possible. I could literally write pages about Theo’s treatment plan. But for now, I’ll give you the quick version and save the details for another day. Theo has Acute Lymphoblastic Leukemia (ALL) same as before. We are waiting to find out if there is a Philadelphia chromosome attached. Theo will be staying in the cancer care unit at Seattle Children’s Hospital for the first month of treatment. In that time, he will receive a combination of steroids, lumbar punctures, and immunotherapy. He’ll be on steroids for five to ten days. Lumbar punctures (back pokes) will happen once a week, delivering a cocktail of chemotherapy to his spinal fluid. Inotuzumab is the first immunotherpy that will be used in the first month of treatment, delivered as an infusion once a week, given three times. This first month of treatment will bring his leukemia cell count down, hopefully as close to ZERO as possible., aka remission. The following two-three months he will be treated with T-Cell immunotherapy and/or Blinatumomab immunotherapy to get Theo into “deep remission”. Theo will then have a bone marrow transplant sometime in the fall. Full recovery from a transplant takes about one year, the first 100 days being the most critical. This past Friday morning, Theo had a double lumen Hickman central line surgically placed where his power port used to be. It is similar to the port, but the lumens are outside of the body so the cental line is constantly accessed. He is back to taking a long list of medications: antibiotics, antifungal, protectors for his heart, liver, and kidneys, steroids, and a uric acid reducer, all in pill form. The doctors say that Theo is strong and in good health despite the leukemia, which is, of course to his advantage. His heart has had some trauma from the previous chemotherapy he received, which has resulted in his heart functioning below average. Fortunately, the therapies he will be receiving this time are less toxic and do not cause as much trauma to the organs. We do not know much about bone marrow transplants. We’ve been told they are “a whole different ball game”. There’s been great progress in the past few days. His white blood cell count is already back down in normal range and his peripheral blast count is below 50!! Go Theo GO!
After I found out about the relapse, all I could think of was, what am I going to tell Theo? How am I going to tell Theo?? He has no clue. He was finally getting to live his life again! School, friends, his birthday in two weeks!!! How am I supposed to tell my sweet boy, that we have to start all over? That all the celebrating was over? That he won’t be going to the swimming pool or rock-climbing gym with his best friend. That he has to go back to taking PILLS!?!?!? He was sitting on the patient bed, playing with his new squishy ball when his doctor delivered the news. My angel. How is this fair? When he saw me crying, he came over and gave me a hug. He rubbed my arm and asked me why I was crying. I had to say something, he needed to know. With a pounding headache and blurry red eyes, I told him. I could barely hear my own voice, like I was deep under water. What he said in return was truly shocking. “Does that mean we get to eat chorizo tacos and draw on the hospital windows? Yay!” What a relief. He was not upset. But boy was I confused. The Child Life specialist told me that this is a very age-appropriate response. The beauty of being young. To have the ability to make difficult situations seem so easy. Theo does not understand the weight of the situation and the struggle that is to come. Theo is an eternal ray of sunshine, on a mission to make people smile and laugh. Even with both arms covered in plastic to cover the IV in each arm, he is still dancing in the shower, still making silly faces, and singing a happy tune at 3am after going pee while hooked up to the IV pole. His energy is contagious. We never stop learning from Theo. He already understands that sadness and happiness spread, so why bother being sad? If you are happy, then the people around you will be happy. He sees the positive in everything, the light in this darkness. Here’s what Theo says about all of this, “This is like a video game. We’ve already played this level, so we know what we are doing, we just have to make the right moves and do it better this time”. Words of a true superhero.
“Happiness is like a bright sunny day. If one million people are happy, it will be a bright sunny day. If one million people are sad and grumpy, it will be a gray gloomy day.” – Theo Avila