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