A warm breeze, the morning sun, a fresh cup of coffee. I am sitting under the maple tree in our front yard with Luis, my love and best friend. We are all home in Kingston for the week. It is our first summer morning sitting together, looking at the trees, listening to the birds, and watching as they swoop down to our bird bath and take a cool sip of water. Luis tells me that recently, we have had a regular visitor to our bird bath. A dove. He comes every morning and evening. We hear him call out from the trees across the street, alerting us to his presence. A sound that brings us peace. Today, he has brought a partner, another dove. Together, they fly over to our maple tree and greet us before they glide down to the bath. Two beautiful doves. For the first time in over a month, I feel calm.
“Welcome to the first day of the rest of your life.” This is what one of Theo’s doctors said to us when Theo was first diagnosed back in 2020. After Theo completed treatment in January 2022 it felt like it was over, we had won the battle and Theo was healthy. Cancer free, moving on. It was a thing of the past. This time is different. This is forever. Not the cancer, but everything it carries with it. The medications, side effects, complications, and treatment. The fish never stops flopping around in my stomach. It’s the pain of knowing what Theo will go through, worse than before. And just waiting for it to happen, like a bad car crash. Waiting to find out how bad it will be. How sick will he get, what damage will be done? Is there an end to this journey? And if so, what does the finish line look like?
We have a plan. A very hopeful yet incredibly terrifying plan. In the last three weeks, Luis and I have had to swallow and digest a very onerous load of information. It’s added some noticeably heavy weight to our minds like a dark cloud following us around. There is no escape, no shelter from the storm. Life is hard. We take it, like a pill. It’s hard to swallow but we do it and keep going. Then I remind myself: What kind of mother does Theo need me to be? What kind of wife do I want to be? Loving, positive, patient, focused, brave, courageous. So… here we go.
When I last wrote, Theo was back in the Cancer Care Unit. He tested positive for rhinovirus. It was causing high fevers almost every night along with another wicked wet cough. That dang cough. Every time it starts to fade, and we think it’s finally gone, another one jumps up, and it starts all over again. Theo stayed in-patient for one week. On Tuesday, July 12th, we received good news that his bone marrow sample came back negative. The flow test (a sample of about 10,000 cells) did not detect any leukemia cells in his bone marrow, which means… Remission! That also means that Theo is no longer functionally neutropenic. His immune system is functioning as it should. His neutrophil count was high, so even though Theo was still having fevers, the doctors let him leave the hospital, knowing he had a strong enough immune system to fight off the rhinovirus. Another test, called ClonosSEQ, was done on July 18th. It takes a deeper look at the bone marrow (a sample of about 1,000,000 cells) to look for sequences and patterns that are similar to developing leukemia cells. Please do not ask me to explain more beyond this. I have tried to understand these test results as best as possible. My head is spinning already! Based on the ClonoSEQ results, the estimated MRD value is 813 clonal cells per million nucleated cells. In other words, those are 813 markers for disease. Didn’t I tell you leukemia cells were sneaky?
Remission. Although it is exciting, remember that the goal is DEEP remission. Theo was still having positive back pokes. Leukemia cells are still present in his spinal fluid. Theo’s disease seems to be resistant to the chemotherapy being used in his back pokes and therefore ineffective. How do we get to deep remission? How do we eliminate the disease in his CNS?
First step, high dose methotrexate. On Tuesday, July 19th, Theo checked back into the Cancer Care Unit. The high dose methotrexate runs through an IV for 24 hours. Theo must clear the methotrexate before he can be discharged, which can take anywhere from four to six days. To help clear it, Theo was hooked up to heavy fluids 24/7, making him pee every two to three hours. He had to take sodium bicarbonate pills every six hours to prevent his pee from becoming too acidic. He also took leucovorin, a medication in pill form that helps clear methotrexate, every six hours. Needless to say, Theo did not get a lot of sleep during this treatment. He was constantly woken up. Either to take pills or to walk with the IV pole to the bathroom so he can go pee in a plastic urinal. Theo cleared the methotrexate in four days, and we left the hospital on Saturday, July 23rd. The second step was the addition of Disatinib. Sound familiar? Wait a minute… it almost sounds like Imatinib! In fact, it IS similar to Imatinib. It penetrates into the spinal fluid attacking leukemia cells with the Philadelphia chromosome. The third and final step to get Theo into deep remission is CAR T-cell immunotherapy. Theo’s T-cells (white blood cells that fight infection) are first extracted from his blood, a process called, apheresis. Those T-cells are then re-engineered in a lab to have Velcro-like tags that attach to the leukemia cells. Basically, like Pac-Man, they seek out and destroy cancer cells. Each leukemia cell has two tags: CD-19 and CD-22. It is important that the CAR T-cells attach specifically to those tags. Pretty incredible, right? Using the body’s own immune system to attack the leukemia! There you have it. Three steps to get Theo in deep remission. Theo was all set up, consent form signed and ready to go for apheresis on Tuesday, August 2nd. The only thing we were still waiting on was an approval from insurance.
On Friday, July 29th, Theo’s doctors sat down with us to deliver some upsetting news. Theo’s insurance, Cigna, DENIED COVERAGE FOR KYMRIAH, THE FDA APPROVED CAR-T CELL IMMUNOTHERAPY. WTF? Are you kidding me?!?! Everyone is shocked, upset, LIVID. Seattle Children’s Hospital has teams of people fighting insurance companies on a daily basis to get treatment covered for sick children. Theo’s doctors spend hours on the phone answering questions and responding to them with detailed letters about treatment daily. How is this legal?? That an insurance company can determine what treatment a sick child can and cannot receive?? How dare they. They do not know Theo! They think they know what is best for him?? Why do they have the right to tell me and his doctors what is medically necessary? This is wrong on so many levels. One of the biggest jokes of the American health care system. When a child is diagnosed with cancer, the ONLY thing an insurance company should say is, “YES” to treatment. Cigna will only approve the CAR T-cell therapy if it is done in San Diego, at a hospital that has affiliation with Cigna. Oh, how convenient for them! Theo would have to spend two months in San Diego while receiving the therapy. Of course, Cigna would not cover any of our expenses to go there. So why San Diego? Well, let’s think. It’s obviously cheaper for Cigna to have Theo go to this hospital in San Diego. Insurance companies don’t care about what is best for a patient. They care about the cost!!! I have been fuming about this for days. Anger on top of sadness on top of fear.
So now what? If the recommended treatment is CAR T-cell therapy, then that’s what Theo will get. There is another option. Seattle Children’s Hospital is re-opening clinical trials for a CAR T-cell therapy. It was not brought up before because the trials have been closed. Theo’s doctors informed us that the trials were scheduled to re-open soon. They believe that this will be an effective treatment for Theo. It is very similar to KYMRIAH. There are only two differences. One, this therapy is not FDA approved. However, there has already been a lot of success with other patients who have received this therapy. Second, unlike KYMRIAH, which only makes tags on the CAR T-cells to attach to CD-19, the therapy in clinical trials makes tags that attach to BOTH CD-19 and CD-22. That makes it a more effective and longer lasting therapy. The side effects are also expected to be the same. Still incredibly scary… but the same. The most common and likely side effect is cytokine release syndrome. The infusion of CAR T-cells causes the immune system to go into overdrive. Theo will be seen every day in clinic following infusion, on high alert for symptoms like fever, low blood pressure, dizziness, severe nausea, and neurological toxicities. The question is not IF he will have side effects, it is more like, HOW SEVERE will they be? Theo’s doctors expect Theo to be admitted to the cancer care unit at some point following this therapy. Hopefully it will be mild and for only a short period of time.
Theo’s bone marrow will be checked (MRD) two days before apheresis and again at day 28 and day 61 following infusion of CAR T-cells. At that time, we hope to have established a deep remission. On Tuesday, July 26th, Luis and I met with the lead doctor on Theo’s transplant team. We had our first official consultation about the transplant and the steps leading up to it: the arrival and conditioning. Where to begin? The arrival. That is when Theo’s care is officially transferred to the Seattle Cancer Care Alliance. Theo will have a new team of doctors, that specialize in caring for transplant patients. He will need full body testing done, which takes about two weeks. Everything from his heart to his cognitive function will be examined to collect data on his health prior to the implant. Then he will begin conditioning. Conditioning is basically wiping his body clear of… everything. A clean slate. No immune system, no cells being produced in the bone marrow, nada. Theo will receive full body radiation and high intensity chemotherapy. All I know about radiation is that it kills everything. This is the scariest part for me. It terrifies me to think of it. Watching my baby boy’s body become so depleted, sick, and weak. Theo will lose his ability to make sperm as well. There is about a 98% chance he will become infertile. Up until this point, Luis and I have been too scared to ask about Theo’s fertility. Now we know. It’s cooked. The consultation was horrible. Nothing like what we were expecting. Luis and I sat down and listened to the doctor go on non-stop for AN HOUR about all the horrific things that can possibly go wrong before, during, and after transplant. She listed all short term and long-term side effects. Growth delays, cognitive delays, severe organ trauma, transplant rejection, risk of infections, and on and on. So, there we were. Sitting quietly, digging my nails into my skin, holding back tears while we listened to the small print at the end of a drug commercial. HEAVY. Not a conversation Luis and I were ready to have. All of it. We just weren’t ready. Deep breath. One day at a time. We still have a way to go.
This is the part now, where I remind myself and all of you that Theo is a superhero. That he is the kindest, strongest, funniest little human being I know. A powerful and positive ray of sunshine. One day, while in the cancer care unit, Theo was making his way into the bathroom with “Beep” the IV pole. Beep’s wheel rolled into his toe. Theo got upset and yelled at Beep. Immediately after, Theo apologized to Beep and said, “I’m sorry, it’s not your fault. I’m just frustrated because I don’t want to be here.” Theo is such a wise soul and loving human being. I believe in Theo. I believe in his doctors, and this treatment. I believe in us. Luis reminded me that it’s important to celebrate the little wins. There will be many battles, some harder than others. We will keep moving forward, smiling, no matter how hard it gets. Theo is not the first, nor the last person to go through this. We are not alone. Who knows what the future holds? Medicine is changing, advancing faster every day. People break through medical barriers all the time. We have friends and family that have proved doctors wrong. Walked when they were told they wouldn’t. Had kids when they were told they couldn’t. Lived long, when they were told their days were short. Miracles do happen and a 1% chance is still a chance! We never give up hope. For the past ten days, Theo, Luis, and I have been home together in Kingston. It has been beyond wonderful. We have been squeezing in as much summer fun as possible. It has been a time for us to recharge. Listen to the doves, smell the salt water, and bury our toes in the sand. A time to remind ourselves of our strength and love. A time to appreciate the things that really matter in life. Family, our health, and mashed potatoes.
“My favorite thing about being in Kingston this week has been being with my family.” – Theo Avila