One recent morning I met a woman in the elevator at Seattle Children’s Hospital. Theo was back in the cancer care unit. I was on my way down to the 3rd floor to get coffee. Elevators can be so awkward and uncomfortable sometimes. You’re just standing there in silence, trying to avoid eye contact with the people standing next to you. Maybe you look at your phone to avoid eye contact or maybe you give the stranger entering the elevator a nod or a smile. Maybe one of you initiates small talk to break the silence. I’m not one to start a conversation in an elevator. But here at Children’s Hospital, it’s different. When you see another parent wearing a “Caregiver” badge and you catch their eye… there is a moment of understanding. A moment of knowing their pain and their sadness. You can feel the weight they carry with them. You know they are not sleeping well, because they too, are sleeping on the pull-out bed in the hospital room next to their sick child. You know they are separated from the rest of the world and their families. Their life has been dramatically altered. You know that this was not the life they had planned for their child. You know that they are scared, too. I smiled at the woman in the elevator. The conversation began with a question. “How long have you been here?” It continued all the way down to the 3rd floor and through three long hallways. The woman told me that she has a 15-year-old boy with AML (a rarer kind of leukemia). He relapsed in July, 10 months after finishing his initial treatment. Shortly after re-starting treatment again with high intense chemotherapy, the boy’s brain started to bleed. Surgery was performed immediately. The woman thought she was going to lose her son. He was in the ICU for over a month and has since recovered. He is back on track to receive a bone marrow transplant later this year. Before parting ways, we wished each other our best and exchanged a look, without words, telling each other everything was going to be okay. I have heard several stories like this one. During many of my rides up and down the elevator. One nightmare after another. Most of them more horrific than I can imagine. Sharing our stories is a way for us to connect in this strange world we are living in. We are not alone. We are brave. We are strong. We are hopeful. Life is hard.
On Monday, September 12th, Theo had a lumbar puncture and bone marrow aspirate. For Theo to be eligible for the clinical study, the doctors must verify that Theo has less than 25% disease in his body prior to lymphodepletion. The results came back the next day and I received some good news. First, the spinal fluid came back negative. Second, Theo’s own healthy B cells (the cells that turn into leukemia cells) have the CD-19 and CD-22 tags. That’s good because those B cells are fuel for the CAR T-cells. Fuel to keep them active for months, killing leukemia cells with the exact same tags! Third, there was only ONE clone cell – out of ONE MILLION – found in his bone marrow!! That’s outstanding! It went from over 800 clones to 13 clones, now down to ONE. This tells the doctors that the treatment is working well, and that Theo is even closer to DEEP REMISSION.
Lymphodepletion began on Wednesday, September 15th and lasted for four days. The purpose of lymphodepletion is to reduce the number of healthy T-cells in Theo’s blood, so they do not compete with the CAR T-cells after infusion. On days one and two, Theo only received one chemotherapy drug. One he has never had before, called Fludarabine. On days three and four Theo received Fludarabine along with Cyclophosphamide. He has had that one before and it made him very nauseous in the past. Cyclophosphamide days are looooong days. About eight hours long. We came prepared with books, games, and snacks. Theo handled it so well. All of it. Never complaining, never making a fuss. He also handled the chemotherapy well. He only needed a dose of Zofran (anti-nausea) every eight hours and he never once felt sick.
September 20th, 2022. CAR T-cell infusion. We were ready, we were excited. Ok, so where are the fireworks? What, no mariachi band to serenade the cells going in? Come on, shouldn’t there at least be a cake with confetti? Actually, the process of CAR T-cell infusion is quite anti-climactic. But that doesn’t mean it isn’t something to celebrate. Science is AMAZING. We should always celebrate science. I think Theo would happily agree, as it is his favorite subject. Did you know that Spider-Man, aka Peter Parker, is a scientist? The fact that we can use our own cells and turn them into soldiers to fight disease is phenomenal. It only took four weeks for Theo’s T-cells to be re-engineered into CAR T-cells. Four weeks for them to grow with the CD-19 and CD-22 tags. Once ready, they were stored at negative 169 degrees F. Just before infusion, they get warmed up to body temperature. The total amount infused is only 0.8ml, but inside that 0.8ml are 24 MILLION CELLS!! The nurses monitored Theo for three hours after infusion to make sure he did not have any adverse reactions. It was easy, painless, symptom free…. well at least for a few days. Symptoms related to Cytokine Release Syndrome are expected to arrive around day 5-10 post infusion. We were thoroughly warned several times by many doctors to expect a fever during that time and maybe even something worse.
Theo was seen in clinic every day after the infusion. There was nothing to report. No changes, no fevers. Theo was feeling great for the first four days. One doctor called this “the honeymoon period”. Is it possible Theo might not ever have symptoms? Yes, but very unlikely. Of course, they were right. And then came day five, post infusion. Like a car low on fuel, Theo just ran out of gas. He hardly ate his pho at lunch (that he had been asking for all week) and his energy level went way down. Just before bed on Sunday evening, I took his temperature. It read 99.2 degrees F. Oh no. It’s not a fever, but it’s close. And unusually higher than his normal. I packed our bags expecting that we would be heading to the Emergency Department (ED) sometime in the middle of the night. Sure enough, at 2am, I woke up and could feel that Theo was hot. His temperature had crossed the threshold at 100.9. Hotel Children’s, here we come!
We were in the ED for six hours. Theo’s blood pressure was very low, and his heart rate was very high. He also developed a horrible headache on our way to the hospital. The doctors did not want him to leave the ED until his blood pressure and heart rate normalized. At first, they thought it was from dehydration. Doubtful. Theo drinks a minimum of 50 oz of water a day just to swallow all his pills. That doesn’t even count the amount water he drinks without pills. This is how one doctor explained it to me: During an aggressive immune response, the body releases chemicals, called cytokines. All of these cytokines can cause the blood vessels to become wobbly and inefficient at getting blood through the body. As a result, the blood pressure drops, and the heart rate increases. An increase in fluids helps the blood vessels firm up and become efficient again. So even though Theo wasn’t technically dehydrated, he needed a lot of fluid. By 9am we were finally taken to our room in the cancer care unit on the 8th floor. For the next 24 hours Theo’s body fought a high fever and a pounding headache. 48 hours later, once the fever and headache were gone, came the neurological toxicities. We first noticed it during a visit with physical therapy. Theo was suddenly walking into things, stumbling and acting confused. He was in a daze. Unable to finish his thoughts or focus on daily tasks, like washing his hands. He seemed… lost. Another sign was his shaky handwriting. Not only had he forgotten how to spell words (like Spider-Man) but also how to write some letters! Doctors performed routine mental exams on Theo multiple times throughout the day and started him on an anti-seizure medication for prophylaxis. It was a very scary and unsettling couple of days to see Theo not be himself, to act so strange. According to Theo’s clinic doctor, his symptoms were MILD. What?!? I do not want to know and hope to never see what moderate or severe symptoms look like. Fortunately, Theo has not shown any more signs of neurological toxicity. He is back to building Legos, making Spider-Man comics, and just being his usual wonderful self.
We were discharged on Friday, September 30th at around 5pm. It felt so good to leave the hospital. We were finally going to get a good night of sleep, no interruptions. Or were we? You are not going to believe this. At 8:30pm, I checked Theo’s temperature because he felt hot. No. It can’t be. This is a trick, right? His temperature was 101.7 degrees F!!! But we were just there! How can this be?? Well, like it or not, we had to go back. Back to the ED until 3am, when a room finally became available in the cancer care unit. Theo’s symptoms were just like before. Fever, low blood pressure, fast heart rate. Turns out those CAR T-cells were still hard at work. At least the fever was not from an infection or virus! It was a rough night, but Theo got through it just fine. He always does.
Presently, we are still in the cancer care unit. Theo has not had a fever in 24 hours, but we are in no rush to leave. Fool us once, but don’t fool us twice! We’ve spent more than enough time in the ED this month. We’re happy to stay in the hospital for a few extra days just to be safe. After Theo recovers from CAR T-cells we have nothing else until conditioning. Really, there is no other treatment scheduled for about five weeks! That’s five weeks of Theo feeling good, because he is in remission and NOT neutropenic! We made it over another hurdle. Time to celebrate immunotherapy success and a happy boy ready for Halloween! I must say, had it not been for such thorough and clear communication by Theo’s incredible team of doctors, this experience would have been so much worse. Since we signed up for this clinical study, we were prepped on everything that could and would likely happen. They made sure we were well informed and prepared. But will we ever feel prepared for the transplant? I’m not sure.
The estimated date for Theo’s bone marrow transplant is November 22nd, 2022. We met with the lead doctor of Theo’s transplant team again during lymphodepletion. We were anticipating something awful, bracing ourselves for the earthquake that was about to shake the room. The first time we met with her, we received a long lecture of all the horrible possible side effects from a bone marrow transplant. This time, it was a lecture about all the things that could go wrong leading up to the transplant. What if Theo gets a cold? What if the ONE donor that is a perfect match backs out or gets sick? What if the airplane carrying the bone marrow crashes on its way to Children’s Hospital? Wait, what?!? No seriously, she said that. So, then what? Ohhhhhh… no worries, they’ll just use cord blood instead. Excuse me, what did you say?!?!? The longer we listened the more agitated and confused we became. Suddenly it felt like we were on the airplane about to crash! Luis finally pulled the emergency break. STOP!
We needed a moment to calm down and breath. What is cord blood and how is it different? Can we hear some examples of when things like this have happened and the success rate? Give us some positive data please!! Turns out, there’s plenty. We just weren’t hearing it. But ask and you shall receive. Cord blood is the blood that comes from an umbilical cord. It contains stem cells that are used for transplants. It is not the standard of care to use cord blood for bone marrow transplants, but it also has a very high success rate and is used often. Fortunately, it is always available and a very good back up option if needed. If Theo gets sick, then he gets sick. Treatment may be delayed, it happens. We will do everything we possibly can to keep him safe and keep germs away, but that does not guarantee anything. It’s easy to focus on the negative when that is all you hear. We have not forgotten that bone marrow transplants have been happening successfully for decades. That Theo is not the first nor the last child to go through this. That Theo is in excellent care, the very best! But there is one very important thing we did forget. Treatment is FLUID. There is not ONE path. There are many, and we have to learn to adjust when things change at any given moment. Theo is the strongest, bravest, sweetest, most positive kid I know. He moves with grace and ease through treatment. Like a true hero. There are so many variables we cannot control. But what we can control is our attitude. We can prepare ourselves by being alert, staying positive, and packing some extra courage. If we get a flat tire along the way, we trust that the doctors know what to do. And if I ever get scared again, I will remember Theo’s words…
“We can get through anything as long as you, me, and papa are together.” – Theo Avila