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

Published by kavila38

The mother of the beautiful, smart, best rhymer of all timer boy with leukemia hoping to keep friends and family informed of my son's progress through treatment while also expressing my feelings and making poetry

2 thoughts on “Backwards World

  1. This too shall pass. Theo and you and Luiz will endure with all of our love and support. It was so hard to hear this, and so wonderful to read your words and know that it will be ok. A tough struggle? No doubt, But Theo has it all correct. You’ll all just do it better this time. Love you all with every day a new day to move you forward. The farm and pool will be here for you next year! Something fun and exciting to look forward to. Aloha Nui!!! Cate and Terry

    Liked by 1 person

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