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Leukemia Changed My Life

I Didn't Even Have It

By Stephanie LedlowPublished 6 years ago 11 min read

I had a lucrative career as a Surgical Technologist. I was a single mom of 2 girls; divorced from their father in '09, and we lived with my mother as it made my life and theirs easier to have Gram to help out with parenting. I'd worked in my field for only 3 years, but had worked up through the line to be Lead Tech at the surgery center that I worked at.

We were a happy trio, I worked hard at work and played hard with my kids when at home. Living in the coastal town of Fort Pierce Florida, ten minutes from the Atlantic ocean, we generally stayed on the beach with family and friends.

I noticed that my second daughter, Lillian, was starting to feel puny. I did what I could to take care of her, and stay working. Then she became febrile, with 103+ temps, and vomited for 2 weeks. I couldn't send her to daycare like that and everyone else had their own jobs to worry about. So I had to call in from my beloved job for ten days straight. I took care of her, spent days and nights cuddled on the bathroom floor, trying to get Pedialyte to stay in her little belly, cooling her body in baths, taking her to the Pediatrician and even the emergency room, only to be told over and over she was suffering from a 'viral process'. We just had to give it time to pass from her tiny body. She was 4yo at this time.

I'll never forget when both my bosses pulled me into their office in my return to work, I'd been fully honest with them the entire time, texting Kathy, the director of nursing, constantly updating her on Lilly's condition. The floor fell out from beneath me as they told me they were proud to work with me, I was one of the best scrubs (scrub techs) they've ever worked with, but they had to make an example out of me, and let me go for missing so much work. I was much younger 5 years ago, and foolishly believed I'd work there forever, no matter what.

I cried harder that day when I got home than I even cried when I got divorced. It was the one thing I knew I was good at, and it wasn't fair that I had to lose my job for being a good mother. But I did get unemployment checks, which was helpful, so while I quickly transitioned to stay-at-home mom life, and looked for more jobs, I had plenty of time to take care of my Lil, as she wasn't getting any better. I took her to her doctor every 5-6 weeks. She still was diagnosed with a viral process?!

When Lilly's 5th birthday came around in May, at her checkup, she braved her shyness and told the physicians assistant, Jessica, that her legs hurt really bad. Jessica shrugged it off, telling my little one she was having growing pains, even though shed stayed 47 pounds since the summer before.

Now, our pediatrics office was busy preparing another office in the next town, so both doctors were working in Port St. Lucie. Every time I took her to the doctor, we'd see the same PA, Jessica; the chick that didn't have a clue (could you blame her, blood cancer wouldn't have been my first guess either.

The summer came and went, with Lilly trying really hard to keep up with myself, her older sister, and my new boyfriend, who was kind to us and taught us how to surf. We hung out with him everyday, he'd spend all his nights working at home on his graphic design business so he could pay with us in the daytime. I started to notice that Lillian wasn't really eating food anymore. She'd always been my biggest eater, "yes please!" to all the fresh fruits and vegetables! Her lunch for daycare usually looked like a deconstructed salad.

She didn't want to play anymore. She just wanted to lay in front of the tv with 5 or 6 cups of chopped ice, eating out of Each with a spoon.

When we went swimming in our pool, at 90°outside, it wasn't cold. Lilly was only able to stay in about ten minutes, then got out, shivering, turning actually cyanotic (blue) in from of my eyes. Standing in the sun wouldn't warm her only taking hot baths would get her temp back up. And as a happy 5yo, she ALWAYS wanted to be swimming. There were days she took 6-7 hit baths to warm up.

I started noticing that her wounds weren't healing. She'd get little mosquito bites (her daycare backed up to a swamp) and she'd scratch them until they bled. But then they wouldn't clot. She would be walking around with anywhere from 3- 7 or 8 bloody lines dripping down her little legs, not noticing that she was leaving trails. I called to make another doctor appt. We came. Jessica the every-present PA was not really helpful. "Mmm, maybe she needs to eat more red meats?" Hhmmmm.

I started noticing myself carrying her more and more when we went places, as she lost couldn't keep up. I turned around in a crowd at the Chili Cook-off in July to look for her and she was about ten people back from me, with COMPLETELY NO COLOR. Her pretty little face was stark white, with absurdly grey lips. I decided to take her home for a nap. That was a Saturday near the end of July. By the next day, Lilly was just crying, sobbing from the pain in her legs and her stomach. Her belly swelled out, I stayed in the bed holding her, praying hard. I Google'd her symptoms and decided she couldn't possibly have leukemia, she must have Chagas' disease, Which is not as bad but just, dang.

I started working a new job the next day on Monday, I couldn't call in my first day to take her to the doctor, it had taken me long enough to find another tech job. I got off work early that day, and rushed her to the doctors office, when Jessica took one look at her swollen tummy and ordered immediate blood work and ultrasounds. I took her for these tests right away. We went home and cuddled and held onto each other.

The next day, My second day of work, I had to be in Stuart (45 minutes away) by 5:30am. I had to leave her very early. My mom decided she was too sick to take Lilly to daycare so I dropped both of my girl off with father, Papa wanted to cuddle the sick baby too. So, I surgerized-in-training, and thought of my sick child. I received a phone call at lunchtime, and stepped outside the surgery center to listen to my voicemail. It was from Jessica and very urgent.

She told me to stop whatever I was doing and get my child and take her to the ER. She would call ahead so they'd expect me. Lillian's white blood cell count was well over 55,000. She had leukemia. I straight up fell onto the parking lot pavement. I called both my parents, barely able to speak. I called my boyfriend, Chris and asked home to meet me at the hospital. By the time i got back into town and got her to the hospital ER, they did their own blood tests. There was all my family, both my pastors, and a family friend, Kevin, who was the chief financial operations guy at the hospital. My bf held Lilly and I in the bed, waiting for a doctor to come back. She was fading in and out of consciousness, didn't have a clue what was going on, only knew that she was glad to have her mommy with her because she didn't feel good!

One of the hospital pediatricians came into the Tiny ER room to tell me my child did actually have leukemia, without further testing, it wasn't clear yet as to which kind. But he thought it might be 'the one that was GOOD to have', if one might have to have it. He got Lillian and me straightaway on an ambulance to Gainesville, Florida; the Shands children hospital was there, and my sister and brother-in-law lived there whole he was in school at UF. After 3.5 hours in the back of an ambulance, even while she was well taken care of, on heavy pain meds (high as a danged kite lol) I'd had to make phone calls to her MIA father and grandmother (it was August 6, 2013; Mema's birthday) and tell them what was going on. By the time we got to the next hospital, I was a basket case, it was hard to think of a sentence, hard to pray, hard to speak. All I could do was lay my had on her baby chest on the gurney and repeat, Jesus, Jesus, Jesus. My mother, and older daughter, Robyn, were directly behind the ambulance with extra clothes and moral support. My sister met us at the ER door, held me up into the exam room. I wasn't crying, she was. I just couldn't take my eyes off of my tiny child on that stretcher. As soon as we got her into a room, she coded. Code blue. They brought her back from the brink, and informed me that her hemoglobin was 2.6. A normal person is at 11-13. Her liver and spleen were swollen and organs were shutting down. PLEASE save my baby. All i could think of is that 'idk' face that Jessica made to me all the time.

She was given 5 bags of whole blood and 3 bags of platelets before they could do anything for her.

I was informed Lilly had Acute Lymphoblastic Leukemia. Her body was making too many baby white cells, and making more and more without letting them age to cell adulthood. They wiped her white cell count out to zero in the first 2 days. She no longer had immunity. My brother in law was instantly banned from the pediatric hematology oncology at Shands, due to his head cold. Our family and friends rallied 'round.

She and I were in the hospital for 7 weeks, my family tried to get me to leave her to go even take a nap at my sister's apartment but I knew I couldn't.

We found out she is highly allergic to morphine. She woke up screaming her poor head off in the middle of the night after her first surgery where her port was placed in her upper right chest, with catheters going into her heart muscles. It was the easiest way to give her many many medications that would poison her while keeping her alive.

She was on chemotherapy treatment for 26 months straight. I was her one constant. I took her to every appointment, every test, every one of her 17 lumbar punctures, with intrathecal chemo placed into her spinal cord fluid. She and I were Team Lil.

She's now Just 2 short years past chemo, and living in hospital rooms and seeing more of her doctors than her classmates. She was diagnosed a week before kindergarten started. She was homeschooled with the same teacher from grades K-2, then in third grade, and she finally got to try school. She finally had enough of am immunity to be around other ' normal' kids. After years of washing our lives in bleach, killing every germ, wearing masks everywhere in public, staying in pj's all day if she wanted, (she ALWAYS got up and got dressed when her sister climbed on her school bus, because she wanted to be normal) she could finally be like a 'normal kid'.

Her first day in school, a kid in her class had to go home bc he had the chickenpox.

A couple months later, another kid who's parents didn't vaccinate came to school with the measles. Either of those could have killed her.

There were days that she was so sick in the hospital, sure to die. So many times.

My brain has become mush since chemo ended. I fell into substance abuse, trying to make it stop hurting so I could do for my kids. During the first three months of chemo, I found out I was pregnant with twins, and that my boyfriend was a narcissistic sociopathic abuser. By the end of that 26 months, where I fought for Lilly's life, and mine and my twins' lives, then dealt with his abuse, I couldn't deal anymore. We broke up and moved out, he wouldn't allow me to take my twins home with me to my mother's house. Even now, 3 years later, I see them sporadically. It hasn't been easy. Things have happened. I ran out of gas one night after work, and just pulled over to the side of the road and slept, after drinking a couple drinks at the restaurant I worked at. It will be long until I can afford a lawyer to get my twins back to me. I've been diagnosed with PTSD, major depressive syndrome, anxiety, and now Bi-Polar. I can't find work. I want my children. I want to be normal. I just want to feed them healthy wholesome foods, read to them, cuddle and sing with them and watch them grow. Having to go absolutely NO CONTACT with Chris has killed me as a mother.

I think I'll walk to Lilly's school today and have lunch with her in the cafeteria. She'll love that So much. :)


About the Creator

Stephanie Ledlow

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