B-cell Acute Lymphoblastic Leukemia (ALL)
Juliana is a vibrant, sweet, intelligent, and brave daughter to Judith and Jorge. She was born on May 24, 2017, in Houston, Texas. On December 30, 2021, Juliana was diagnosed with leukemia. On January 2, 2022, after three and a half days in the hospital and one full day in the ICU, her diagnosis was confirmed as B-cell acute lymphoblastic leukemia (ALL).
Like a lot of 4-year-old children, Juliana is the epitome of innocence. Loving life, endless energy, kind and considerate, Juliana is the kind of person who others enjoy being around. In early November of 2021, Juliana spiked a random fever. At a temperature of 104.9 degrees, it would worry any parent. In this case, it was especially strange because just a few weeks before she had spiked a random fever reaching 102.4 degrees. We were concerned. Judith took Juliana to her pediatrician where she went through a battery of tests. Negative for COVID, strep throat, and the flu, she was sent home with something that was likely viral. Eventually, her fever would be gone, and life would return to normal.
In the last few weeks of November, things started to change. From what seemed like one day to the next, Juliana did not have the same energy she did before. In fact, it was more than just her energy levels, she began to complain of leg pain, to the point of tears. Growing pains, that seems normal we thought, even though it became a chore listening to Juliana complain about her legs, not wanting to go outside, and then refusing to stand up without being carried. We were concerned. For the little girl who could not sit still and never complained, it was not like her to be so lethargic to not even be willing to stand up from the potty.
In early December, Juliana broke down at the dinner table in pain. Her stomach was hurting so bad she could only cry. “What is going on?” we thought. I could not help but notice Juliana looked pale, really pale. So, we took her to a pediatric urgent care. Oddly enough, an x-ray would show Juliana’s colon filled with air. No blockage, or even debris, just air. So, home we went with instructions to administer a suppository to relieve the gas. Two weeks with no improvement, trouble sleeping, and lack of appetite, Judith made another appointment with the pediatrician. A mother’s intuition is strong. She asked the pediatrician for a full blood panel before any evaluation was even performed. Juliana’s pediatrician agreed a CBC was a good idea. Judith got the results faster than the doctor’s office.
White Blood Cell Count: 4.2; Red Blood Cell Count: 1.44; Hemoglobin: 3.8; Absolute Neutrophils (ANC): 0
Judith broke down. She knew what this meant. Even though we all know that self-diagnosis and searching the internet for medical advice are never recommended, this was different. With two cousins who lost their battle with cancer, and an aunt and a grandfather who suffered from cancer, it was too obvious. She called me at work in tears, in a panic, texting me pictures of the CBC results. “We need to calm down. We don’t know for sure! We are not doctors,” I told her, but deep down I was shaken. My mind raced and stood still at the same time. Cancer, not even the spoken word but the thought alone nearly paralyzed me. Could our daughter have cancer? Could that even be a reality? I immediately left work to join the two at home. They say when it rains, it pours. It seemed to pour that evening. It was December 29, just days before the New Year, and the pediatrician’s office was slammed and understaffed. We could not get a pediatrician to call back despite how we pleaded about the CBC results and the emergency we felt was becoming. When we got the call, as we expected, they wanted another blood test immediately. The response from the pediatrician was that Juliana’s numbers were so low, it was a big concern. After some pointed questions, the pediatrician would tell us what we feared. If the test is not wrong, and there is still a chance that it could be, a confirming test would strongly suggest cancer. Our concern turned into a laser focus on staying calm. We packed bags assuming a hospital visit was in our future and went right back to the lab.
It was about 5:00 p.m. in the evening, and we decided to get some food in the packed car. In line at Chick-fil-A, the pediatrician called. The pediatrician regretfully confirmed the test results were accurate. “If this was your daughter, what would you do?” The pediatrician said she would take her daughter to the emergency room. So, that is what we did.
It was around 9:00 p.m. that night at the Texas Children’s Hospital emergency room. Only one parent can be with their child, COVID rules. Juliana wanted her dad. Judith would have to wait outside the ER alone. Things moved so fast. Now, Juliana had an IV in her hand. “What’s happening?” I thought. I pleaded with the nurse to let my wife come back with us. “All I can do is let the charge nurse know.” The charge nurse came in shortly after. She had been called prior to us getting there by the oncology fellow on-call at the hospital. She let Judith back without a second thought. That’s great, right? It was, but it also sent us a signal. They knew something that we did not.
The oncologist would come to talk with Judith and me. They were able to look at Juliana’s blood under a microscope and see leukemia cells. “I’m sorry,” she said. It was so matter of fact. There was no “we think,” or “it’s possible,” or any other glimmer of hope. “We see.” And that’s when life changed.
We broke the news to our immediate family who was already awaiting an update. We were getting admitted. We would not be going home. Juliana was admitted to the hematology/oncology ward. We got a nice spacious room. Things were quiet. A flurry of nurses and oncologists would come in as we tried to settle down, trying to get labs. Things were really moving fast. The labs the hospital ran showed Juliana’s hemoglobin at 2.9, unbelievably low. It’s no wonder she could hardly move. A hemoglobin level below 7 is when blood transfusions become a reality. The typical range is between 11 and 15 for a child her age. The 2.9 was a real emergency. The doctors decided Juliana needed to be transferred to the intensive care unit right away. So, now we are in the ICU, Juliana has been traumatized for hours, and she has one IV in her arm and another in the opposite hand. It is past midnight now, and we are all exhausted. Juliana would receive four blood transfusions throughout the night. The next day, she had another. The next morning, we discussed the procedures already being planned. Talk about pace. They would need to perform a bone marrow biopsy via the hip, a lumbar puncture (spinal tap) to test the cerebrospinal fluid, and administer methotrexate, a chemotherapy used to attack cancer that may be hiding in the spinal column, which if found, becomes harder to treat. We hardly had time to understand the fact that Juliana had cancer. No sleep, no food, and no peace of mind.
We were already assigned a team of doctors. “This is what life will be like.” We both knew it in our minds. We would spend nine full days at the hospital before we were back home.
Induction came first. The first 29 days of treatment are essential to getting a pediatric leukemia patient into early remission. A large dose of steroids, dexamethasone to be exact, would change Juliana in physical and emotional ways. We were warned of side effects such as aggression, increased appetite, changing of taste buds, increased weight gain, and a few others. They all came out. Juliana soon began to have an insatiable appetite. She was always hungry, but never wanted to eat. We learned it was because she was only craving salty foods. She lived with the feeling of starving every day and would eat until she felt sick. After 15 minutes or so, she was hungry again. She began to suffer from “moon face,” a common side effect of the steroids. Our little girl was changing. Not only did she never laugh or never want to joke or cuddle, but she did not look the same either. This was a lot to manage emotionally, and it is not to say the rest of our lives stood still. I was still responsible for managing an organization through a once-in-a-business type of turnaround. Judith had been working hard, day in and out, for years giving our daughter a home-based education using actual curriculum, making meals multiple times a day for a growing child, dealing with the good, the bad, and the ugly alone with a toddler. We are lucky she is our only child; we acknowledge the privilege of not having to split our limited resources with multiple children.
Then we noticed her hair. As we brushed it, more was left in the bristles each day. Next, we would notice it in my beard or on our clothes after carrying her. Finally, her scalp became increasingly visible. If we thought it was still possible that she could go through chemo and not lose her hair, we knew now that we would not be so lucky. We began to worry about how to have “that” conversation with her. Our beautiful 4-year-old who had only ever gotten her haircut once in her life was bound to lose it all. The hospital was amazing at helping. Child Life, look them up, they really do help change lives. They helped us with ideas and methods that have worked well for those before us and gave us countless gifts that would help Juliana begin to understand what was happening to her, how her life would be moving forward, and what will happen during clinic visits (like getting her port accessed). They gave us a Barbie. This Barbie was bald. It was the perfect surprise when we showed Juliana. She was enamored. After a couple of short conversations with her about losing her hair, she was ready. On a Saturday morning in mid-February, Juliana took control. “I think I’m ready to cut my hair,” she said. “I’m just tired of it, it just keeps falling out.” Unprovoked, and in a matter of fact, she decided she was ready.
How excited were we to see how excited Juliana was to look like her Barbie? Not only that, but she was also going to give Dad the same haircut! So, after a few minutes, Juliana and I were both bald. Juliana was all smiles. Now that induction is over, we look back at it as a total success. Through the toxicity of the drugs, Juliana made it to early remission. She took control, she acknowledged she cannot live the same life as other children her age, and she has even begun to fight to take her oral chemotherapies just a little bit less. That is one of the hardest things about having a child with cancer that you do not hear about much. If you thought you stressed about a cough syrup for your child at one time, imagine having a child who has never taken medication being forced to take multiple medications, multiple times a day, that taste disgusting, and as a parent, you know that they are the only chance at life she has. So far, that has been one of the most ongoing challenges we have faced. The medicine will never taste good, you can never crush a pill small enough, and you can never mask the taste of a toxin. Yet, despite the refusal growing into an all-out battle, you know there is no choice at the end of the day. She will take her medicine willingly, or I was giving it to her forcefully. You do not get to choose as a parent. You are forced to be the bad guy.
We recently started Juliana’s second phase of treatment, consolidation. The last two weeks have been a true blessing. After being off the steroids for a few weeks, she has really bounced back. Yes, she has received three lumbar punctures in three weeks, but other than a bald head, you would never know she is sick! She began running, dancing, laughing, and singing. It is an amazing thing to experience after the last month of chaos. Of course, not unscathed by the drugs, Juliana does suffer from peripheral neuropathy, a condition developed as a side effect that has weakened some of her motor skills. She is wobbly and not as stable, she is not as strong and cannot easily get up from the ground or jump in the air, and she walked on her toes for a week. This is a condition we expect to be temporary, although as you come to hear often through the consultations, there are risks associated with everything, and there is a chance it could be permanent.
We are so humbled that our journey has been only as challenging as it has been for us so far; we recognize and grieve for those families not as fortunate as us. We get to see extremely sick children more often than we would like. We expand our network, both formally and informally, with families who have had similar experiences and realize that things could be so dramatically harder in the blink of an eye. We have been blessed by outreach from an incredible support system. Family, friends, and strangers have stepped up in big ways to support our family to the point that we are often found speechless. When we feel we have caught our breath as a family, we vow to become a part of the cancer community forever. We have seen such beautiful souls throughout the experience, and in different organizations, we have seen people that work with a true mission. We want to be there for others as others have been there for us. We know that Juliana has a great chance of being cured, and we have learned to celebrate the little things just a little bit more. This does not mean it is any easier, but we understand what we are fighting for.
We hope and pray that one day no parent ever must live these words, and until then, we will continue to support some of the real-life superheroes fighting to find a cure.