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Big doors are opening…

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.”

See You on the Other Side

“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

Fluid

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.

Ready to leave the hospital like a ninja

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.

This kid knows how to eat

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.

Mama always brings the FUN!

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.

CAR T-Cells stored at -169 degrees
CAR T-Cells warmed up to body temperature

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!

Papa always brings the MAGIC!

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.

Making his own Spider-Man comic book

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.

This looks like a job for Spider-Man!

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.

Theo practicing his photography skills

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!

Chillax! We got this.

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…

PURE JOY AND LIGHT

“We can get through anything as long as you, me, and papa are together.” – Theo Avila

The Black Belt Spirit

“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.

Heading home to Kingston

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.

cheeeeeese!

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.

popsicle joe!

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.

A fun day at work

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!!

apheresis machine
ready for apheresis

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.

excited for orange gas and sleepy milk

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.

2nd grade

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.

no pie is the same

“Nothing beats an imagination” – Theo Avila

Recharge

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.

Tie Dye Family

“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.

Salud! Salud! Salud!

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.

Master of the eye staring contest

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.

Say What?

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.

fishing with Papa

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.

My Monkey

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.

family beach day

“My favorite thing about being in Kingston this week has been being with my family.” – Theo Avila

Zazen

“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.

water fight!

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?

SALUD!

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.

pill time

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.

Going for a ride and picnic in the 1970 Cadillac

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.

Tough night in the Emergency Department

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.

Hello, nurse? Can you please bring my monkey more bananas?

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… THE TRANSPLANT. 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.

It is okay to NOT be okay.

clay art

“The key to hanging out, is music” – DJ Theo

Backwards World

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.

A silly boy with the BIGGEST heart

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.

A teacher, philosopher, and eternal comedian

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 the most 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.

Current meds list
Hickman Cental Line

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!

making the best of it
Theo’s drawing of a “backwards world”

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.

my 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

Mashed Potatoes

Once upon a time there was a boy, full of adventure and courage. He was empathetic and kind, making friends wherever he would go. He lived in Seattle with his parents and went to school where he learned Spanish, the native language of his father. One day the boy woke up with a runny nose and a hideous cough. Ah, another cold. Almost expected, as it was cold season in the month of November. As days passed, the cold persisted. No amount of rest or water could tame the beastly virus. It morphed and changed week by week, taking on new forms and creating new symptoms. Headaches came and went. Ears became so clogged the boy could barely hear. The cough, which at times seemed to dissipate, would return with a vengeance the following days like dragon fire. The boy and his parents had plans to go to Mexico in December to spend the holidays with family there. They were worried about the boy traveling with clogged ears and a cold. The boy’s parents took him to the doctor, twice. Both times they left with the reassurance that indeed, it was just a nasty cold. They were instructed to bring some Tylenol with them on the plane to alleviate any discomfort that the boy may experience in his ears from the change in pressure. By the time their vacation arrived, the cold had settled. They were all feeling better, safer for the moment. However, cautious and aware of the threat that was still there.

It was a comfortable flight to Mexico that December. The worst of the cold symptoms had disappeared. The apprehension and dread that had been following them for the past two months finally left and was replaced by the joy and excitement of being on vacation. The boy could hardly wait to go swimming in the pool and play on the beach. They had been looking forward to this vacation for so long, counting down the days. They had finally made it. Time to have fun and relax! Or so they hoped. As much as the boy’s parents wanted to let go of their worries, fear hung onto them. Something wasn’t quite right. The boy, although in good spirits and without cold symptoms, was missing the energy and strength that a healthy boy on vacation should have. Sure… he swam, he built sandcastles, he laughed and played. But it was softened and short-lived. As if someone had turned down the volume. The boy, at four and a half years old, was no longer taking long naps during the day. However, while in Mexico, he was taking naps as long as three hours every day. The boy, who normally resists an early bedtime, was eager to crawl into the sheets well before it was time. The boy, since birth a “hot potato” who is always looking forward to snowy days and a cool breeze, complained of being cold while the warm Mexican sun covered his skin. The skin, that normally would tan three shades darker in one day under the sun, was pale as a ghost. His energy and color gone, like it had been sucked away by a vampire. The boy’s parents, trying not to overreact or assume the worst, continued to believe that this unusual behavior was just the boy recovering from a bad cold virus, reassured by the recent diagnosis that the doctors had given them. They had good faith that after all the rest the boy was getting on vacation, he’d be back to his normal self by the time they got home. Unfortunately, things only got worse.

Towards the end of the vacation, the boy started having unexplainable pain in his right foot. Next came the bloody nose. By the time they were back in Seattle, his energy was so depleted he could not even walk up a set of stairs. The tiredness clung to him like venom, weighing him down every minute of the day. Red dots on his neck and thigh, (which they soon found out to be called petechiae) were the last and final sign that there was a bigger, scarier mystery to solve. Back to the pediatrician they went, knowing this indeed was not “just a cold”. This was something more serious. How serious, they were about to find out. The doctor noticed the petechiae almost immediately. He ordered an x-ray of the boy’s chest and blood to be drawn at Children’s Hospital. Did the boy’s mother hear the doctor correctly? She wondered nervously. Did he say, “slight possibility it could be leukemia”? Unable to believe such horror, the boy’s mother continued through the evening with complete disregard of the idea. So, they headed to the hospital where the nurse struggled to find the boy’ s veins and successfully draw blood. After four tries, the nurse finally got a sample. Exhausted from painful needle pokes and tears, the boy was anxious to go home and sleep. The boy’s mother, also ready to sleep, had assumed their adventures were done for the day. They ate some pizza on their way home and got ready for bed. Then came the phone call.

“Head to the emergency room right away” instructed the doctor. The next two hours were a blur of terror and doubt. Is this really happening? What is going on?? As soon as the boy entered the emergency room, he was swept away by nurses who immediately went to work on him. The boy’s mother was spinning, while the father, who was away on a work trip, drove frantically from Portland with dread in his heart to be with his family. The doctors finally confirmed the parent’s worst fear: leukemia. And so, their journey began.

During treatment and after. What a difference.

The night we found out that Theo had leukemia, I cried the hardest I’ve ever cried in my life for two days straight. It was uncontrollable sobbing from deep within my gut. Each cry violently escaping my mouth like some form of exorcism. A way for me to process the pain so I could somehow climb out of the black hole and be present, in one piece, for my son. After those two days, my body felt numb. I had no more tears left, no more demon of pain inside me. That emptiness was soon filled with love, strength, and hope. Exactly what I needed for my family to win this battle. Time to put on my big girl pants. Theo needs me to be strong, he needs me to be brave. For two years I didn’t cry. I smiled and told myself everything was going to be okay. I told everyone that it’s fine, that Theo is so strong. I confessed that it was hard but tried to focus on the positive, believing we would get through it. AND WE DID.

celebrating at the clinic

On January 24th, 2022, Theo had his END OF THERAPY celebration at the hospital. When a patient finishes their therapy, they get to ring a big bell and have their picture added to the END OF THERAPY board in the main hallway of the clinic. Theo and I walk past that board every time he has an appointment. It is a massive collage, full of happy pictures of patients who have made it to the other side. As I walk past it, I look at it longingly. My thoughts have progressed from, “one day Theo will be on that board” to “almost there” to finally “he made it”. It’s like being inducted into the hall of fame. Now, when other families walk past that board, they will see Theo. My boy, in all his Spider-Man glory among the other smiling faces. I could not be more happy or proud.

Theo’s picture on the End Of Therapy board

So now what? Well, for starters Theo can go back to seeing his regular pediatrician for annual check-ups and routine concerns. The next time Theo gets, say, a rash (like he did on his hand about one month ago) we no longer need to contact his team at Children’s Hospital through MyChart with pictures and a description asking what to do. That’s what the pediatrician is for! Oh, but I love his team at Children’s Hospital. They are my security blanket. I know that part of the transition back to normal will be hard for me. But don’t worry. We are not saying good-bye. More like, “see you around”. As in, see you once a month for the next year. Then once every three months the second year. The third year is when they cut us loose and the long-term survivorship care team follows up with Theo once a year. Theo is presently having multiple tests done so his team can evaluate how his body has tolerated or changed as a result of the chemotherapy. He’s had an electrocardiogram, and echocardiogram, ultrasounds, and x-rays to check everything from his testicles to his bone growth and heart function. We will go over the results with Theo’s team within the next month. Theo’s immune system has been recovering at lightning speed. It’s hard, but I’m trying not to stress and worry every time Theo gets a cut or has a runny nose. He is a warrior after all. One day while riding his bike, he took a hard fall and cut up his knee pretty bad. It looked as though martial arts class was going to be a struggle. Turns out, it wasn’t. It was no big deal at all. I told Theo after watching him perform in class, “Theo, you crushed class today!” As cool as a cucumber, he responded with, “like eating a bowl of mashed potatoes.”

electrocardiogram

Theo was done with his treatment. Things were getting “back to normal” and Theo was feeling great! We had been waiting for this moment for SO long. The day when cancer was a thing of the past. The END OF THERAPY was here! It didn’t feel real. Thinking about what Theo had just been through, remembering the hardest days of treatment was like remembering a story. Did that really happen? Was that only two years ago? The memories and feelings are there but they are distant, as if from a terrible nightmare. I didn’t know what the end of therapy would feel like. People have been asking, “how does it feel now that Theo’s done?” My response was always a generic, “GREAT!” with a big smile. But it didn’t feel different at all at first. It just felt like another day because Theo had been feeling good and that makes us happy. I kept waiting for this change, this ah-ha moment of incredible euphoria. Like I was Fraulein Maria singing “The Hills Are Alive” in the beautiful Austrian Alps. Well, that never happened. Instead, I cried. All of a sudden and without warning…. at dinner with friends, while eating a croissant, while talking to my parents, when hearing a favorite song. Two years later…the tears came flooding back. The dam broke and the uncontrollable sobbing returned. Anything could trigger my tears to start pouring out of my eyes. Ugh, I felt like a mess. But sometimes change is messy. Sometimes we hold things in to protect ourselves and others. I had been holding those tears in for two long years and finally, I let them go.

Go Theo go!

As each day passes, Theo’s memory of this journey will become foggier. He’ll move on to go to school, meet new friends, and have different and fun adventures of his own. Our hope is that this journey with cancer will never EVER have to be repeated. But the imprint it has left in our hearts and minds will remain with us forever and remind us of the pain cancer causes. We will always be aware of the many families and children who are still going through it. Remembering that there are so many who are not as fortunate as we are. The world is full of suffering and pain but also full of GOOD! We know that because we received so much love and support from our friends and family. We see the silver linings, the good in times of bad. So now, let us use our health and good fortune to help others who are not as fortunate as we are. It’s that plain and simple. Spread love and kindness and it will come back to you. I promise.

Big boy mashed potato eater

“Let’s ride this baby” -Theo Avila (said just before body surfing a big wave in Mexico)

It’s not too late to make a donation on my personal fundraising page to the Leukemia and Lymphoma Society. I will be participating in the Big Climb on March 27th. Please join me! All donations go towards blood cancer research, education and patient services. This is a great opportunity to help others in need and give back to those less fortunate. Theo has climbed mountains to get through therapy! The Big Climb is but a tiny fraction of what cancer patients have to go through. This is our chance to show how much we care and fight for a cure!

My page: http://www.llswa.org/goto/TheoStrong

The Final Countdown

Today is Friday, December 31st, 2021. That means there are exactly 12 days left of Theo’s cancer treatment. 12 days left of taking pills. 12 days until Theo is DONE WITH THERAPY and hopefully, done with this disease forever. Now, if that isn’t the best Christmas present ever in the world, I don’t know what is.

A Very Merry Christmas

It feels truly amazing to have come this far, to be this close. Somebody pinch me, is this really true? Yes, and we could not be happier. It’s been a busy past couple of months preparing Theo for the end of therapy and the return to social life and school, aka “back to normal”. Theo has had two doses of the pediatric Covid vaccine. Theo is immunocompromised, which means his immune system has fewer memory cells. Therefore, a third dose of the vaccine is needed to help his immune system remember the virus and build up a defense against it. Theo is due to get his third dose on January 6th. Unfortunately, the CDC has not approved a third dose for immunocompromised patients under the age of 12. Say what now? This makes no sense to me. On one hand, I have Theo’s doctors telling me that Theo needs a third dose of the vaccine. No, it is not a booster. It is really a THIRD dose. But how can he? I am told he is not eligible! Fortunately, I have a smart friend, who is also going through the same thing with her child. She is awesome and someone I often rely on for recommendations, advice, or just to vent to about what we are going through. In this case, she has informed me that Theo’s doctor needs to send a letter to a specific vaccination clinic in order for him to receive his third dose. There, done! Thank you, friend. Theo has been looking forward to getting the vaccine for so long now. He was so happy to get his first shot! It is a big step in the direction moving forward, past disease and pandemic.

Dose 1 of the Covid-19 vaccine. Theo said taking the band-aid off was harder than getting the shot!

Wait, there’s more to celebrate still! Theo had his port removed!!! Finally, it’s done. It’s been months of us talking about it, planning for it, trying the IV in preparation to have it out, etc. I knew it would be a big deal, but I was not expecting it to feel this good! Like I’ve been hiking up a mountain with a 50-pound backpack on, and I finally reached the top and can put down the heavy weight. Luis and I are so relieved, so happy. One big stress, gone. The risk of infection and fear of Theo having a fever is greatly reduced. Theo is excited as well. The anxiety caused by the anticipation of getting poked in the chest to have his port accessed… gone. The fear of something hitting him in the chest and bumping his port… gone. Even having to see his bump and be reminded of the port and cancer… gone! The surgery was quick, only about 30 minutes. He woke up from the anesthesia very cranky, extremely emotional, and super hungry. About one hour later, plus a cheeseburger, fries, and milkshake, and Theo was back to feeling like himself again. Theo was instructed to take one week off from normal activity. We gave him Tylenol for the first 24 hours following the surgery and after that he was fine. The hardest part of recovery was trying to keep Theo from moving too much! He was feeling great just a couple of days afterwards and was tired of resting. He wanted to JUMP! RUN! PLAY! Well, now he can, and without thinking about his port.

Pre surgery. Waiting to have his port removed.

Theo has been to the hematology/oncology clinic twice, for labs and a provider visit, since the last update. The first appointment was on Monday, November 29th. With surgery scheduled the following week to have Theo’s port removed, Theo planned for a peripheral poke in his hand for the blood draw. Theo arrived at the appointment well hydrated and with a healthy glob of numbing cream on both hands. Success! The assessment was that Theo is “clinically doing well with labs and exam appropriate to continue oral chemotherapy.” In other words, ALL GOOD! A pretty boring provider visit, but we like boring. We like uneventful when it comes to medical concerns. Theo’s next visit was one month later, on Wednesday, December 29th. Another uneventful visit. No major concerns, other than to discuss Theo’s third dose of the vaccine. That’s it. His next appointment is not scheduled until January 24th, 2022! But wait, what about the end of therapy? I was shocked to find out that Theo does not have an appointment on his last day of therapy. So, I asked his doctor, “What happens on the last day? What do we do?” It felt so anticlimactic to hear her response, “just stop taking pills”. Oh… that’s it? I guess my plan of exploding confetti and popping open bottles of champagne in the clinic is not happening then? Haha, no worries. We plan to celebrate with friends and family surrounding us. Yes, that’s the plan. (Date and Time TBD). The final countdown begins. 12 days…

Let it SNOW!

Oh boy, what a Christmas we had!! According to Theo, it was “the best Christmas ever!” Tons of delicious food, loads of presents, and fun with family. But Christmas is not just a day. It is much more than that. It is the season of giving, loving, and celebrating. It is the feeling of magic and hope. It is the time of sacrifice and forgiveness. It is a smile from a stranger, a hug from a friend, an unexpected gift. It brings light, so that even during the darkest grayest days of winter, we have joy. In my opinion, Theo IS Christmas. His love and excitement of it all is extraordinary. It is so innocent and pure; it transcends all beauty. This year, we have so much to celebrate. We are home together, happy and healthy, and full of hope for the new year to come.

First grade photo.

“While there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good humour.” – Charles Dickens, A Christmas Carol

Lessons

November 2021. It’s been one year and 10 months since Theo was first diagnosed with leukemia. One year and ten months of heart ache, tears, triumphs, fear, stress, and insane love. One year and ten months of (pardon my language) figuring this shit out. The therapy map, back pokes, hospital stays, the list of medications, going to the emergency department. So much has happened and we have learned (and are still learning) a great deal throughout the process. It’s been an overload of information! Do you remember it all? Don’t worry, this is not a test. It’s easy to forget all the details. I’ve had to go back to past blog entries to recall certain details several times. This blog has been extremely helpful in sharing the journey of events and our emotions. It has also been an effective way to inform and educate friends and family about Theo’s experience with leukemia. But I also hope this blog will serve as a diary of sorts for Theo to look back on in his older years. For this entire experience not to be just be a distant bad memory from his youth, but a reminder of his strength. A badge of bravery that he has earned and can be proud of. I hope that his enthusiasm for telling others about what he has been through stays with him throughout his life. After all, this is HIS story.

One of Theo’s many silly faces

In case you have forgotten, here’s a quick review of some important bullet points to remember: Theo has Philadelphia chromosome positive acute lymphoblastic leukemia (ALL), diagnosed on January 9th, 2020. He has a power port that was surgically placed under his skin to receive chemotherapy. A blood sample is taken from his port site at every appointment. The Complete blood count (CBC) is checked at every appointment to evaluate overall health and measure levels of red blood cells, white blood cells, hematocrit, hemoglobin, platelets, and liver function. A CBC also detects the absolute neutrophil count (ANC), a measure of how strong the immune system is. Chemotherapy wipes out all cells good and bad, significantly lowering the strength of the immune system. Theo has completed the following phases of therapy: Induction 1A, 1B, Consolidation #1, #2, #3, Interim Maintenance, and Delayed Intensification… twice. Theo is currently in Maintenance phase. The last and easiest phase of treatment. Medications he is currently taking are Imatinib, Bactrim, Mercaptopurine, Methotrexate, and Zofran. End of therapy is January 11th, 2022. I know, I know. I told you all it was January 26th, but I was wrong! Theo started Maintenance on January 26th, 2021. At that time I was told that Maintenance phase lasts for one year. However, at Theo’s most recent appointment I was told that Theo’s therapy ends two years after his start date. Hey, I’ll take it! Even sooner than expected, so that makes us all very happy. Theo has roughly two months left of therapy. Soon, he will have his port surgically removed. What comes next? WE CELEBRATE!!!!

Spider-Man. Trick-or-treat!

Not much has changed since my last update. That would explain why I have not written since September! Wow, how time flies. What have we been up to then? We’ve been keeping busy with work, life, and just doing typical six year old boy stuff. There is never a dull moment. Theo has two very wiggly dogs (the “pig” and the “wig”, as he calls them) to play with, do his lessons with, to run with at the park, and to be his audience when he plays the piano. Although the weather is not always the best for playing outside, we make it happen every day. Especially now that Theo is obsessed with basketball. First it was baseball, then soccer, now it’s basketball. Even though the ball doesn’t quite reach the hoop yet, he doesn’t care. He uses all his strength to throw the ball into the air towards the hoop as high as he can. Even after his arms tire out he will dribble the ball… for hours. It’s a perfect family activity, a favorite family sport. Luis and I met at a gym, Sound Mind and Body, and used to spend hours playing basketball together at the gym on the weekends. Theo is still doing online school and for the most part it is still a success (some days more than others). He will eventually go back to school in person and we know it will be so good for him. All the play time with Mama and Papa does not fulfill his need be with friends, kids like him. Whenever he gets to play with his best friend, Cameron, he transforms, like a new person. The energy, the excitement and happiness that explodes from his body makes all things bad disappear. It’s the best medicine for his soul. And let’s not forget Spider-Man! He never leaves Theo’s thoughts. He is everywhere all the time. The Spider-Man stuffies, the video game, the costumes, the movies, the books, the toys. He’s on Theo’s bedroom walls, his sheets, his clothes! Can you guess what Theo was for Halloween?? That’s right, Spider-Man!! So there you have it. The life of six year old Theo. Now, let’s move onto the medical update.

Basketball Days

Day one of Maintenance, cycle four, was on Wednesday, October 6th, 2021. Theo had an appointment for labs and a provider visit. His blood counts were strong with an ANC of 1,300. His liver function measured to be a little higher than normal but not an urgent concern. In other words, no need to lower his chemotherapy dose just yet. Theo looked good. He looked strong, “clinically doing very well” as is stated in his assessment. It has been our ONLY hospital visit since the last update! Of course that doesn’t mean that everything has been perfect. There is always something to be concerned about. After all, he IS taking chemotherapy, medications that are saving his life but are also toxic to his body. We expect there to be side effects from the medications. When and how they will preset themselves is the big mystery. Like the rash that developed on Theo’s face and fingers in late September. It started out looking like eczema on his right and left cheeks. A few days later it had spread, red and bumpy all over his face and left hand. It was a little itchy at times but not painful. We took pictures and sent them to Theo’s team through MyChart. The rash was non-infectious in appearance and was likely related to Theo’s medications. We were advised to keep his skin hydrated and monitor for any changes. Fortunately the rash cleared about one week later. We also thought it was likely due to the medications. This is not the first time this has happened. Shortly after Theo started taking Imatinib, back in January 2020, he developed a rash all over his stomach and back. It lasted about two weeks and then cleared up.

At the beach with the Pig and the Wig

Even more alarming was the morning Theo woke up with tachycardia. I was away from the house that morning and Luis was in his office working. Luis ran to Theo’s room when he heard him crying. Theo’s heart felt like it was going to explode out of his chest it was beating so hard and fast! He was too dizzy to even sit up. Theo was scared. Luis, also terrified, helped Theo relax. Just like when Theo had his acute allergic reaction in the hospital, Luis was there to comfort him. Was it a nightmare? A fever? Infection? Nope. Theo did not have a fever. After some tears, hugs, and snuggles with Papa, Theo recovered and continued his day as if nothing had happened. Without a fever or any other symptoms there was no need to see the doctor. Again, just monitor and call if anything else unusual happens.

Piano Man

There are other side effects that we are more familiar with, nothing we haven’t seen before. Theo experiences quite a bit of cramping. It can be as small as a hand cramp from holding a pen or as bad as a Charlie horse. You know how those are. That sudden acute pain from your muscle locking up. All you can do is hold your breath and grit your teeth until the muscle finally relaxes. It doesn’t matter how much water Theo drinks. He never seems to be hydrated enough. A warm pack or cloth is the only thing that seems to help, but by then the pain is already there. Occasionally Theo will just have random and very sudden pain in various places in his body. Theo will be running down the street and then stop dead in his tracks, grabbing hold of his hip, leg or ankle. It comes and goes randomly. We stop, rest, hydrate, and monitor. Luis and I are constantly telling and reminding Theo to drink water, which he does very well. I wouldn’t be surprised if Theo ends up gluing his water bottle to his hand after this experience. It’s like adults and our smart phones… can’t go anywhere without it!

Stuffy Party

Nothing gets my armpits sweating more than Theo getting sick. A rash, a fever, or an unpredictable or inexplicable pain gets my heart racing and stomach turning. Not now. No more. He’s had enough. He is doing so well now and we want it to stay that way. That’s the thing about all the medications Theo is taking. All the possible horrible side effects. They are like termites hiding in your hardwood floors, slowly eating away at the wood without you even knowing until the floor collapses beneath your feet. There is no way to prepare for any of this. It’s like taking your first new born baby home from the hospital. I remember how afraid I was to take home Theo, this tiny helpless human, and be responsible for his life! The “what ifs” were endless. What do you do? Just do YOUR BEST. Listen to your gut, follow your heart, trust your instincts. Remember what Theo’s doctor said, “there is no right or wrong answer”. We are all doing the best we can with the knowledge we have. It’s okay if we don’t have the answer to everything. ASK QUESTIONS. Yes, we make mistakes, and hopefully we learn from them. Try not to dwell on what could have or should have been done, but what we can do moving forward. Stay positive!! Knowing that for every bad moment, there are at least one billion wonderful moments. These are all the lessons I am still learning and have to remind myself of each and every day. I cannot let myself worry so much about what might happen. Instead, appreciate what we have. An incredibly sweet, sensitive, smart, strong boy. My angel. Theo is our reminder of all that is beautiful in this world. He has learned so much through pain during this process and to be eager to share his story is his gift to the world.

Thumbs UP!

“The Pig and The Wig” A poem about our dogs, Manu and Maggie, by Theo Avila

The Pig and the Wig. The Pig and the Wig. The Pig and the Wig want to be big.

The Pig and the Wig. The Pig and the Wig. The Pig and the Wig want to eat a fig.

The Pig and the Wig. The Pig and the Wig. The Pig and the Wig like to dig.

The Pig and the Wig. The Pig and the Wig. The Pig and the Wig dig a big fig.

Solving the Puzzle

Game shows. I used to watch them at Grandma Ethel and Papa Ted’s house with my siblings when we were kids. In the morning, it was The Price is Right and Family Feud. At dinner time, we would all find a seat in front of the tv and watch Wheel of Fortune, followed by Jeopardy, while eating our food. We knew exactly what time they were on and looked forward to watching them together, always rooting for a favorite contestant and shouting out answers. It was a thrilling race to see who would win or solve the puzzle first. Right answer? You just won the Showcase Showdown! Wrong answer? You lose it all. Sometimes it feels like this journey through cancer is like being on a game show. There have been countless times we have asked ourselves, what do we do? Do we take his temperature again? Do we call the doctor? Do we give him more Miralax? Do we try to insert the NG tube again? With every question comes the horrible thought that if we do not choose correctly, we could make things worse or create a disaster. Like the contestant that “loses it all”. That may sound dramatic, but when you are dealing with a life threatening disease, everything IS dramatic. The most recent dilemma that we have struggled with is deciding whether or not to let Theo go back to school in person. Back in June we had decided he would return to school. Back when Covid cases were slowing down and the outlook was much better with the plan of people getting vaccinated. Hah… that didn’t work out as well as we thought, now did it? Covid continues to spread like wild fire among the unvaccinated and now we have a dangerous delta variant to deal with. The point is, things have changed since June. So Luis and I asked ourselves, do we feel that is is safe for Theo to go to school in person? Safe to be around other kids whose families are not vaccinated? Safe for Theo to go to school with kids whose families do not wear masks or practice social distancing? What should we do??

Silly Scientists

The answer is… there is no right or wrong answer. The answer is, do what we, Luis and Kelly, feel is BEST for Theo. No one can answer that for us. So it is up to us, Theo’s parents, to decide. We decided to keep Theo home and do online school. At least for now. We also withdrew him from the soccer club this fall. Kids are not required to wear masks while playing outside. When you have a group of six year old boys chasing after a soccer ball, social distancing doesn’t exist. Would Theo be safe playing soccer? Safe at school? Sure… maybe. But we are not willing to take that risk. Why add that stress if we do not need to? Why take that chance? This is what we know. Child cases of Covid are higher than they’ve ever been. Cancer patients that get Covid take longer to recover and can test positive for up to four months. Hospitals are FULL. We are also entering flu season, not to mention all the other viruses out there waiting to make their return in the colder months. Theo getting sick is the LAST thing we want right now. Theo is almost done with treatment. He is so close! Have you marked your calendars?? January 26th, 2022. That’s right. END OF THERAPY!!! His immune system will recover and then we will be ready for him to go back to school. Hopefully he’ll be vaccinated by then, too! Until then, that is our decision. We will be ready to move onto our new “normal” soon. After all, there will always be viruses, bugs, germs, flu seasons, and probably more Covid. Difference is, there won’t always be cancer.

Bobo’s sign says it all

Is it September already? Wow, it really has been a while since the last update. We’ve just been a little busy with some house projects. Building a fence, remodeling a bathroom, building Theo’s play structure, building furniture… just to name a few. Don’t worry, we’ve been squeezing in fun every minute we possibly can. Today we are taking a break from projects so I decided to use this time to write! You’re probably wondering how our five star, all inclusive, four week vacation from the hospital was. It was FANTASTIC. It really gave us time to enjoy summer without thinking of cancer other than the daily temperature checks and pills. Theo has been healthy and happy. We returned to the hospital on Friday, August 13th for labs and a provider visit. Theo’s blood counts were strong (ANC 1,800) so his team increased his dose of Methotrexate to 100%. Two weeks later, on Tuesday, August 24th, we returned to the hospital for another provider visit and his last back poke! Your initial reaction might be, “hooray, that’s great news!” However, not for Theo. He was so sad that it was his last one. As you all know very well, he loves back pokes. So we made this last one special by inviting Theo’s two Spider-man stuffies, aka his “brothers”. Party in the sleepy time room!! It was a great success, especially because Theo’s favorite anesthesiologist, Dr. Carl, was there with him.

Last back poke with the Spidey brothers and Bobo

During his provider visit on August 24th, I spoke with one of Theo’s doctors about our concerns of Theo returning to school. Some people are so articulate, so communicative and well spoken. That’s her. Giving me the facts while being sensitive and considerate to my emotions and concerns. She is the one who reminded me, there is no right or wrong answer. I think Luis and I already knew that, it just helps to hear someone you trust and respect say it. Theo’s doctors are truly amazing. We appreciate them more than they will ever know. As for the rest of the visit, Theo looked great! His blood counts were strong again, ANC 1,243. His dose of Mercaptopurine was raised to 100%. So now ALL CHEMOTHERAPY is at 100%. GO THEO!

Theo built Bobo his own chair

The next and most recent appointment was on Tuesday, September 7th, for labs and a provider visit. Theo’s ANC was 1,500. Excellent. All other blood counts were good as well. This means that Theo is staying strong even with his chemotherapy dose at 100%. There are no signs of Theo’s body slowing down. Not one bit. Theo is an incredibly powerful six year old boy. It goes without saying just how proud we are of him. He has worked so hard for so long. He just keeps on going and going. An unstoppable force. I love listening to him talk to his class and teacher during his Zoom meetings about his cancer. Explaining how the needle goes into his port and how much he loves the sleepy milk. Like he’s talking about something as simple as what he ate for lunch. Theo will return to school… eventually. Fortunately, Theo has wonderful friends and family that he can play and socialize with safely. And a very silly mama and papa who will always play, wrestle, tell jokes and stories, and have adventures with him. We just finished reading Charlie and the Chocolate Factory. I do not know who enjoyed it more… me or Theo. Each night Theo could hardly wait to see who would get in trouble next, and what the Oompa Loompas were going to sing about. Theo is now of the age where we can enjoy more books and movies together, which is super fun. Online school isn’t so bad either. We try to make it as fun as possible. It’s not easy to sit with your learning coach (that’s me) for five hours every day doing lessons, but we’ve got the hang of it. He also started piano lessons with Mormor. He loves it! Theo plays the piano for the dogs every night before they “go to bed”. With Theo in school, Luis busy as always with work, and the never ending house projects, I’d say there’s plenty going on in our day to keep us busy. But never too busy to go kayaking on a beautiful summer day!

Kayaking in Port Gamble

So what’s next? Theo’s doctors strongly recommend that Theo get the Covid vaccine as soon as he is eligible, which could be soon! We can hardly wait!! (Remember, we do not say the word “can’t”.) The next appointment is scheduled for Tuesday, October 4th. You may recall that Maintenance phase has four cycles. Well… October 4th is day one of cycle four. Wow, the last cycle! It feels like reaching the third trimester of my pregnancy. My belly so big, body and mind transformed, so excited and overcome with joy with what awaits, I just wanted to get on with it and have my baby already! Cycle four, here we come, full speed ahead!

Spider-Man taking a little spin around the friendly neighborhood

Sometimes I wish I had a crystal ball that I could look into and see the future. Ha, and how about a genie in a lamp and magical flying carpet while we are at it? Of course that does not exist so I hope for the best and stay positive. We are definitely looking forward to getting back out there, traveling and going to school. Beyond that, we just don’t know. We don’t know what kinds of side effects from chemotherapy Theo will have to live with or haunt him later in his life. The end of therapy does not mean the end of everything. We don’t know what life beyond therapy looks like for Theo. We don’t know what the world looks like 10, 20, 30 years from now! But why worry about the things we have no control over? Control the things we can, like our attitude, our actions, how we treat each other and the planet. No matter what your future may be… be safe, have fun, and smile.

Always on the move

“We are the music makers, and we are the dreamers of dreams.” -Charlie and the Chocolate Factory, by Roald Dahl.