“Every problem has an opportunity for something good. You just have to look for it.” Yamada, K. (2016) What Do You Do With A Problem? (M. Besom, Illus.). Compendium, Inc.Sounds easy, right? Turning something bad into something good. Finding the happiness in a maze of sadness. Staying calm in a storm of chaos. It’s not easy. It takes a lot of hard work, focus, and practice. I’m not there yet, but I’m working on it, one day at a time.
One week home turned into two, which turned into a month, and more. We’ve had a few short stays in Seattle for some of Theo’s appointments. But his doctors keep giving us the green light to go home to Kingston again. Initially we were told that we might have a small window of time in between treatment when Theo will be healthy enough to be at home, farther away from the hospital. Obviously, nothing is ever set in stone when it comes to the treatment plan. It all depends on how Theo is doing. Is the current treatment effective or do we need to change course? Is Theo tolerating treatment or do we need to take a break? So many “ifs” and “we’ll see”. So, when his doctors told us it was safe for Theo to be home, we did not get our hopes up. If a week was all we got, then that was great, better than no time at all. We never expected to have this much time! Whenever Theo and I have to head back to Seattle for an appointment, I pack our bags for a seven month stay. You never know, right? Is this it? If Theo gets a fever, we might end up in the cancer care unit for a while, days, maybe weeks. Well, needless to say, we’ve had a few changes, some delays and interruptions that have allowed us to be home, together as a family longer than expected, during the most beautiful time of the year. A sublime summer vacation.
On Friday, August 5th, Theo had a back poke with chemotherapy and a bone marrow aspirate. Ready for the results? The flow test came back negative. ClonoSeq was even better. It showed only 13 markers for disease out of one million cells! That’s an MRD of about 0.0013%. Let me remind you that the last time they checked his bone marrow the ClonoSeq results showed 813 markers out of one million cells. That’s an MRD of about 0.08%. Incredible. That’s a huge improvement and small victory to celebrate.
We signed the consent for the Seattle Children’s clinical trial (PLAT)-05 for T-Cell Immunotherapy on Monday, August 8th. When we found out that insurance was not going to cover KYMRIAH to be done at Seattle Children’s Hospital, we were livid. But then (PLAT)-05 suddenly became an option. We were so confused. Why was this suddenly an option and is it safe? Hearing words like “we do not know the dose” and “experimental” over and over again did not make it sound safe. The room started closing in around me and a pit grew in my stomach. As Luis likes to say, “It feels like I went in to buy a Mercedes and left buying a used Kia”. It should be made clear that these clinical trials are not a back-up option to the FDA approved KYMRIAH. In fact, Theo’s doctors believe that (PLAT)-05 is a better option of treatment for Theo because it is more effective. Why had we not been informed of this before? (PLAT)-05 just wasn’t available when they were initially considering CAR T-cell therapy as a treatment option. Theo’s doctors believe Theo is an excellent candidate for this treatment. Oh man. Luis and I really needed to hear that. It made a big difference in our attitudes and changed our anger and fear into hope. An even greater reason to like this option is that the principal investigator of this study is Dr. Rebecca Gardner. Before she transitioned completely to research, she was Theo’s clinical doctor. We know her and we trust her. She was actually the one who reached out to Theo’s current team of doctors and made the recommendation. I’m feeling much better now, how about you? We had the intention of doing apheresis the next day, Tuesday, August 9th. Unfortunately, Theo’s liver function was too high to start. One of the side effects of that triple chemo back poke he had the Friday before. His ALT (liver function) was above 300. It must be below 200 in order to do apheresis. Theo’s doctor thought maybe a bolus or two of fluids might help bring it down. Nope. How about one more bolus the next day? Still no. We were sent home with instructions to return the following week on August 16th, when Theo’s liver function would most definitely be under the threshold level. Another week to enjoy being home? We’ll take it. We asked Theo what he wanted to do when we got home. His answer: go to work with Papa! He was so excited the night before going to the office that he said he barely slept. Luis and Theo are twins inside and out. Two old loving souls.
Apheresis is the process of extracting blood plasma from the body, separating the white blood cells from the plasma, then returning the blood back into the body. The T-cells (white blood cells) that are collected are then sent to a lab to be re-engineered for immunotherapy. It takes about four weeks for the new T-cells to grow and be ready for infusion. With Theo, apheresis took a total of about four-five hours for the entire process of collecting the T-cells. Theo’s doctor, knowing that this therapy was likely in his future, put in the order for Theo to have a double lumen Hickman line this time around, instead of the power port, like he had last time. One lumen carries the blood out of his body, while the other lumen is used for the return of blood. The entire process is pretty easy and straightforward. In the last 30 minutes Theo had some sudden nausea and feeling lightheaded from the blood loss, but that is expected. What’s next? What do we do while we wait for the new T-cells to grow? Here’s an idea: Hernia repair surgery!!
We found out Theo had a hernia in early 2020, shortly after he was first diagnosed with leukemia. Urology wanted an ultrasound to evaluate his testicles prior to the start of chemotherapy. There it was. We were told it was on the large size and should be repaired soon after the end of therapy. Fortunately, the hernia never bothered Theo or caused him any discomfort. The most visible sign of its existence was the fluid leakage down into his right testicle. Sometimes, when Theo received a lot of fluid, it would fill up like a water balloon! It needed to be repaired… soon! Definitely before transplant. This waiting period was the perfect window. Only one problem. Theo developed a cough. Oh, come on!! Really?! That darn cough. We thought for sure it would throw a wrench in our plans. Thank goodness, with the help of twice daily albuterol, Theo’s lungs stayed clear and the surgery to repair the hernia was completed as planned on Thursday, August 25th. The surgery went well, no complications. Theo only needed Tylenol and Ibuprofen for the first 24 hours and then he was fine. He was moving about as if nothing had happened. We were shocked at how easy it was and how fast he recovered. What a relief! We could finally check that one off the list and go back to focusing on treatment.
Buckle your seat belts everyone. I was just informed that Theo’s new T-cells have finished growing and are ready!! On Monday, September 12th, Theo is scheduled to have a back poke and aspirate to check MDR. The rest of the week he’ll be receiving more chemotherapy to reduce the number of existing T-cells in his blood, called lymphodepletion. It is important that when the new T-cells are infused, they do not compete with Theo’s own T-cells. So, his immune system is weakened just enough to lower his white blood cell count. INFUSION is scheduled for Tuesday, September 20th. It is both exciting and terrifying at the same time. We are finally doing this. But holy crap, we are doing this. This immunotherapy has the potential for some very serious side effects. Cytokine release syndrome being the most common. Therefore, Theo will need to be monitored closely. He will be seen in clinic EVERY DAY after infusion, with the expectation of a fever to appear sometime between day seven and ten following infusion. You know what that means: we’ll be checking into Hotel Children’s. Don’t worry, I’ve already reserved the master suite. After Theo recovers, we wait for the arrival of Theo’s transplant team, with the newly unified Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center. Now called the Fred Hutchinson Cancer Center.
We have already met once with the lead doctor of Theo’s transplant team. Remember how that went? Not well. It was like we were invited to a friend’s house for dinner, and they served us sour milk. Well, now we know, and we’ve had some time to digest all the possible complications. On August 17th, Luis and I had a consultation with the radiation oncologist at UW to learn about the radiation Theo will receive during conditioning. We were expecting another serving of sour milk. To our pleasant surprise, it was much better. The doctor was direct but also very positive. He took time to ask us questions and gave us several examples of patients that he has treated in the past who are healthy today. He did not just ramble on about all the horrible side effects of radiation (though there are many). Will Theo have side effects? Yes. With some, we know what to expect. With others, it might take years or decades for the side effects to show up. He broke it down like this: Theo will receive a dose of 13 gray. Receiving radiation is not painful, it will not burn. Immediate side effects are nausea and fatigue. He expects Theo to have cataracts. Not next year, but likely later in his life. Ok, lots of people have cataracts and they are easy to treat. He expects Theo’s growth to be slightly delayed and that he will not reach the full height that he would have, had he not received radiation. We’re talking inches, not feet. He will be infertile. It’s possible he may not make testosterone, but there are replacement hormones that are very effective. His bones will not be as dense so he will have to avoid playing high contact sports like football and rugby. Theo will have an increased risk for developing other cancers and tumors. Most of the tumors that patients develop after radiation are benign. The dose of radiation to Theo’s head and brain will be slightly higher. Theo may have some cognitive delay. He will have cognitive tests done every year to track his cognitive function. Now get this. Age is a HUGE factor in how severe the effects of radiation can be. Had Theo received the planned amount of radiation to his brain as a four- or five-year-old, it is likely he would not have been able to live independently or even hold a job as an adult. Fortunately, as a seven-year-old, the effects will not be as strong. The doctor went on to give us several examples of patients who have lived on to study medicine, become valedictorians, and receive scholarships to top colleges around the world. That’s right. My boy will be just fine.
Theo is the master of positivity. A pro at turning any gloomy day into paradise. He is already so much more evolved than I ever was as a seven-year-old. So much so, that he has a black belt!! Luis and could not believe it. Theo’s martial arts instructor had the idea to present Theo with an honorary black belt a few weeks ago. He is an incredible teacher, a hero to Theo. For him to come to our house and present Theo with such an amazing gift… it just made my heart explode. It is a day we will never forget. Thank you, Sifu Rick. Theo will be back on the mat one day, stronger than ever. There are so many moments when Theo is my teacher. While making a peach pie together, my bottom crust started to collapse in the oven. I started to panic. Theo came to my rescue and said, “Mama, it’s ok. Not every pie is the same.” Such a wise thing to say. Where did he come up with that? A couple of days ago, I was frantically swatting at a cluster of mosquitos that were buzzing around by the window. Theo laughed and told me, “Stay calm. Don’t be so frantic and then you will catch the mosquitos.” He was right. Every time I start to lose my cool and feel overwhelmed, it is Theo who reminds me to slow down and take a deep breath. Try it. Close your eyes. Take a slow deep breath in. Imagine your problem standing in front of you. When you exhale, imagine your breath blowing your problem away. Whatever is bothering you or making you feel frustrated. Take a deep breath in and blow your frustration away. Far… far…away… Now, with a calm mind, maybe you can see something good.
“Nothing beats an imagination” – Theo Avila