DIAGNOSIS: Acute Lymphoblastic Leukemia
HOBBIES:

ALL-STAR
Eli

It was the first weekend of October 2020, and Kira had returned from running a marathon with her best girlfriend outside of Salt Lake City. She noticed that the tissue in the corner of Eli’s eye was swollen without any obvious explanation. After a few days passed, she made a telehealth appointment with the pediatrician and Eli was prescribed a simple antibiotic. She half-jokingly said to the doctor, “this isn’t a brain tumor or anything, right?”

“I saw us as the quintessential all-American family prior to Eli’s diagnosis,” said Eli’s mom, Kira. “We had just moved into town to be closer to my in-laws, our kids were involved in dance, karate, lots of activities. We had an old RV that we loved driving all over Montana and surrounding states. Tom owns a chimney sweep and dryer vent company, and I was earning a solid income as a massage therapist in the local ski resort town. I had also taken a part time job at the airport as a ramp agent in order to earn flight benefits, and the position was also a nice social outlet for me. Despite COVID having just begun, life remained fun, and we had places that were still open and accessible.”

When we spoke to Kira, they had just returned from the hospital in Billings, Montana – a two-hour drive from their home.

“I needed to also bring Eli’s little sister (Evie – 5 years old), and we spent the night prior to his lumbar puncture procedure and chemotherapy,” explained Kira. “While, the care is excellent, it isn’t the well-oiled machine and operation of a large children’s hospital. Procedures and appointments often take significantly more time. These extended appointments can feel frustrating, especially when trying to navigate the intricacies of the medical appointment and keep a five-year-old entertained for hours on end.”

It was the first weekend of October 2020, and Kira had returned from running a marathon with her best girlfriend outside of Salt Lake City. She noticed that the tissue in the corner of Eli’s eye was swollen without any obvious explanation. After a few days passed, she made a telehealth appointment with the pediatrician and Eli was prescribed a simple antibiotic. She half-jokingly said to the doctor, “this isn’t a brain tumor or anything, right?”

“On Friday, October 9, I took our kids to their homeschool group, which was visiting a local horse farm. Eli was playing and climbing on the haybales, but as we were pulling into our neighborhood, he said that he had a headache, which I thought was strange for a five-year-old to say. I took his temperature and called the pediatrician since he had a fever. She suggested I take him to the emergency room, which I admittedly thought was a bit much for a simple eye infection! We waited for quite a while as we were seen as very low priority. Finally, the doctor came in, felt his glands, liver and spleen and stated, ‘This is a lymphoma, and we need to life-flight him to a children’s hospital, now.’”

“Standing there, it was one of those moments when all of the oxygen felt as though it had been sucked out of the room and all of the blood in my body drained down to my feet. I stood there wondering, ‘What in the world just happened?’ How could she possibly have diagnosed cancer simply by feeling his glands? This has got to be a mistake. Surely, they’re going to tell me they overreacted and were wrong, once they run bloodwork. This kid has the best genes. He was breast fed for years. His father and I are both athletes and over-achievers.’ The doctor wasn’t even kind about it. However, I didn’t need her to be kind; I needed her to be right, and she was.”

“I recall her asking if we wanted to go to Denver or Seattle. I hadn’t a clue, and so she chose Seattle Children’s. So much of that night is a blur. I told Eli that something was wrong with his blood; that it wasn’t his fault, and that we had to take a special plane to another hospital to figure out why. Tom had finally arrived to the hospital and we decided he would fly with Eli and I would drive out the next morning after my sister arrived on the first flight from Pittsburgh. I collected her from the airport, and we made the 11-hour drive to Seattle. Evie was with my in-laws, not yet knowing that her mother, brother and father had disappeared in the middle of the night.”

By the time Kira arrived 18 hours later, Eli was on a vent and had undergone multiple surgeries to place his port, experienced a bone marrow aspiration, lumbar puncture, started chemo, and numerous other procedures.

“It felt surreal; less than 24 hours prior, he had been on the farm riding horses.”

Eli was fully in-patient for the first 32 days of induction treatment with a goal to put his cancer into remission. Tom returned to Montana to care for Evie and his business; during Covid only one parent was allowed in the room at a time, and there would have been little to nothing for Evie to do in Seattle with everything having been shut down.

“We were fearful about shutting Tom’s business down and him losing his clients; I wasn’t going to be working for years to come. We could see the financial implications of what was ahead for us, and medical bills were accruing quickly. The life-flight alone cost $142,000. Eli’s care was just shy of a million dollars per month; and we were in Seattle for nine months. We had planned our lives and future based off two incomes – two parents working,” said Kira.

“I lived in the hospital with Eli for that initial period, full time. Tom flew out for a weekend with Evie in late October. At that time, flights were around $800, a hotel room around $140, and then there were food expenses; that made a weekend visit extremely expensive. We were suddenly trying to maintain two households, and little expenses like toiletries, and buying an extra bottle of Tylenol began to add up quickly. When Pinky Swear sent us $500, it was a relief to have some assistance to alleviate these smaller expenses that were impacting us each day. I felt like a monster worrying about money when I was in full recognition that our child could die; yet our dreams were flying out of the window. Everything was shattering; all of our plans and dreams were being put on hold. The fear, stress, and anxiety were crippling for me; and I was angry and scared. I had been having a wonderful life, and now I was stuck in Seattle with a child with cancer and a rapidly crumbling financial picture.”

The social worker gave Kira a packet of information with a list of resources.

“I began looking through the list and thought ‘This is going to take forever. I’ll need to find our tax forms, and we probably won’t qualify anyway. But we certainly don’t have the means to maintain two households and all.’ The Pinky Swear form was easy, though. They initially sent an orange envelope with bracelets, and it was fun to receive mail from new people and places. At that time, gift cards and donations felt as though we had won the lottery. It was hard to ask for help as both my husband and I had always proudly been self-supporting; charitable help wasn’t for people like us…we had historically been the ones to donate to organizations! Pinky Swear recently granted us a $500 award. These days $500 goes a long way for us and goes toward the purchase of gas, food, and many of the extras that Eli’s care requires. One of my super-powers is penny pinching, and I can make those funds stretch!

“Now that we are back in Montana and Eli isn’t quite in the crisis situation he had been, there aren’t quite the abundance of expenses anymore. The tricky thing is, though, Eli will remain in treatment until 2024. That means daily oral chemo, weekly large doses of oral chemo, monthly chemo infusions, and lumbar punctures. He also has a suppressed immune system. With all these factors, it makes working extremely difficult and challenging for me as I must work around his appointments, his general physical status at any given time, and keeping him in safe situations to avoid contact with anyone who might be sick. The fiscal pressures remain intense, and we don’t need stuffed animals or LEGO sets; we need to stay ahead of our financial responsibilities,“ said Kira.

Today, Eli is a beautiful seven-year-old who enjoys doing all the things that seven-year-old boys do: Boy Scouts, swimming, rock climbing, skateboarding, riding his bike and Tae Kwon Do.

“We remain vigilant about Eli’s nutrition and diet, believing that these things contribute to his overall well-being. But chemo and steroids really do wreak havoc on his tiny body. We remain hopeful as we approach the two-year mark in October. We’ve been told that, if a child relapses, it is usually within the first two years after diagnosis. Every month is nerve-wracking when Eli has bloodwork; he looks and feels good, but the proverbial monkey is always on our backs, worrying about the cancer returning. I experience high levels of anxiety of being blind-sided again; my other cancer mom friends tell me that the feeling never really goes away, though. Exercise helps mitigate the stress and anxiety; yet I know I must take things one day at a time…or maybe better said, one moment at a time.”

“The lowest point of our journey for me was a day in February 2021 when Eli’s treatment was compounding and becoming significantly more intense. His nausea was relentless and he was suffering immensely as he was enduring intramuscular injections in his legs three times per week. I remember sitting on the floor of a hospital room, on a mat with Eli. I was sobbing to the doctor and literally begging for help, physical and emotional support for him. She offered no help and simply stated, ‘I’m not sure what you’re asking me exactly, Kira, but you’ll get through this.’ After she left the room, I recall being prostrate on the floor, face down, not knowing how much more I could take and feeling entirely helpless to get relief for Eli. Our life isn’t like that today, though, and I don’t know that we’ve had our high point yet. I remember thinking that all would be ‘normal’ once we returned home to Montana, but that hasn’t exactly been the case. This journey is definitely a marathon, not a sprint. And I believe our best days are yet to come.”

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