How it Began

Almost always, the first question I am asked when people learn about Emily’s leukemia is, “How did you know?” And I honestly tell them, “Looking back I can see how all the symptoms added up to something serious, but it never crossed my mind. I was clueless” In the five weeks leading up to her diagnosis, as her symptoms developed and we wondered what in the world was going on, cancer never once entered my thoughts. Ironically enough, just five days before her diagnosis, I saw a billboard for St. Jude’s Hospital with a large picture of a bald child, and I thought to myself, “In the midst of our trials, at least we can thank God that we are not dealing with cancer.”
While cancer was nowhere near my thoughts however, I did know something was wrong. But we are a wait-and-see kind of family. We don’t go to the doctor often, we haven’t had many ER trips, and, until now, no major illnesses. We typically treat at home first and trust that God’s wondrous design will heal itself with proper care. So when Emily began showing odd signs that something in her body was off, we waited. Because at first, the signs weren’t that alarming.
The week before Christmas we brought a stray dog into our home. And when Emily developed puffy eyes the week after Christmas, I attributed them to a mild dog allergy. So when the dog ran away (for the millionth time) on January 12th, we let him go, thinking it would be best for Emily anyway. And I knew that pet dander can take six months or more to clear the home’s ventilation system, so I wasn’t concerned when her puffy eyes didn’t immediately go away.

Around Christmas 2011 Just before symptoms began

Around Christmas 2011
Just before symptoms began

But at the same time, Emily, who is (appropriately) affectionately nicknamed Stitch, also began to lose some of her boisterous personality and energy. We used to joke that if Jason and I wanted to go out, we would need two babysitters –one for Emily and one for the other four kiddos. She was a ball-of-energy on fire and running on Duracell batteries. But during those first weeks of January, she seemed a little more tired, a little less energetic, and a little less playful. And as time went on, she became even more tired and very cranky. By the middle of January, I couldn’t set her down. She wanted to be held and carried everywhere all the time. She didn’t want to play, and she wasn’t content to sit at my feet. She wanted to be snuggled in my arms. So I did laundry with her on my hip and cooked with one hand and sat on the couch a lot. My mom and sisters stopped by often to help out. She didn’t have a fever or runny nose or cough or any other signs of illness, so we all thought she was going through a phase. Maybe she was growing molars, or maybe she was just being clingy, or maybe I had spoiled her too much.
Then she stopped walking. By the middle of January, Emily wouldn’t walk 20 feet without crying. I would set her on the couch so I could just-go-cook-dinner-with-two-hands-for-five-minutes, and she would scream and try to come into the kitchen, but she would fall to the ground in the middle of the living room and just sit there crying until I came to pick her up. And when I picked her up, she still seemed to be in pain. She wanted to be held, but it hurt her to be touched.
She had trouble falling asleep at night and would scream and gnaw at her crib rail until I’d give in and pick her back up, and we’d repeat it over and over again, until she’d finally, fitfully, fall asleep around midnight. Then she would wake up, screaming at the top of her lungs, just a couple hours later. Exhausted, I’d go pick her up, only to have her moan and cry in my arms, never comfortable or content. By then, I knew something was wrong. Not allergies or teething or a passing phase. She seemed to be in pain, but she couldn’t tell me why. I would hold her at night and cry and pray and beg God for wisdom.
See, we didn’t yet have health insurance. Jason had begun a new job the past Fall, and insurance was scheduled to kick in mid-February. And I didn’t want to rush to the doctor for nothing, so I waited. And, while all the above symptoms seem pretty serious written down now, at the time I didn’t put it all together. Because some days she was completely normal. No puffy eyes, not in any pain, playful, walking and smiling. And then there was life. Busy, chaotic life was still swirling around us, demanding my constant attention. So though I grew increasingly concerned, we continued to wait.
By the end of January Emily began to show more bruises than was normal, especially considering the fact that she wasn’t walking or playing as much as usual. And when she did walk, she was very clumsy, falling a lot. The last week of January, while I was in the kitchen, I heard a loud thump followed by her screaming, and I rushed into the living room to see her on the floor at the base of the coffee table. No one had seen her fall, but she was crumpled in the fetal position gasping and crying as if the air had been knocked out of her. I picked her up and laid her on her back to check for bruises or bumps, but as I did, her eyes rolled back into her head, and she seemed to pass out. Immediately I stood her up, calling her name, and her eyes popped open, focusing on me. I didn’t see any lumps anywhere on her, so I laid her on the couch with her brother and called my mom –a nurse, for advice. I was scared and shaking, and as I waited to reach my mom, my son told me that Emily had fallen asleep. Thinking she had suffered a concussion, I picked her up and carried her around, keeping her awake. My mom told me the signs to look for and advised me to take her to the doctor. But then, just like that, Emily was okay. She wasn’t crying, she was smiling, she was awake, she didn’t throw up, and when I set her down, she toddled off to play. So I determined to keep an eye on her, and when nothing else manifested itself, I figured she had just fallen hard but was fine.

January 2012 The puffy eyes and pale skin are apparent.

January 2012
The puffy eyes and pale skin are apparent.

A little more time passed, and then she stopped eating and began only wanting to nurse again. I actually felt relief at that point because I had seen this symptom in my other children at times and thought she must have an ear infection, which was an easy fix. And it would totally explain most of her symptoms: not eating, not sleeping well, pain, clinginess, loss of balance. It wouldn’t explain why she wasn’t walking, or why she was randomly falling asleep during the day, but I thought an ear infection must be what was wrong.
So on Friday, Feb 3, my eldest son’s 10th birthday, I decided to take Emily to a doctor. Jason had called early in the morning to tell me he had been laid off from his job, so I was no longer waiting on health insurance to kick in and felt the freedom to just go pay cash and take-her-in-already. I called my mom and asked her to come with me to a clinic to have Emily checked. I was so anxious that morning, getting ready to go to the doctor, because I was sure we would finally have an answer for what had been plaguing our Emily. Unfortunately, the doctor had no answers for me. She did not have an ear infection and he sent me home with Benadryl for her puffy eyes, telling me to come back on Tuesday if I was still concerned. I was so bummed out. I had been sure she had an ear infection, and I knew the Benadryl wasn’t going to work. But it was Ethan’s birthday, and we had plans, and Jason had just been laid off, so again we waited.
It was that day, driving to take Ethan and a friend miniature golfing, that I saw the St. Jude’s billboard. And while I had a heavy heart about Emily and about the loss of Jason’s job, I thanked God that everyone in our family was healthy.

Feb 3, 2012  Just five days before being diagnosed; just this morning the Dr. sent us home saying she was fine.

Feb 3, 2012
Just five days before being diagnosed; just this morning the Dr. sent us home saying she was fine.

The next day Emily woke up with her eyes so puffy one was almost swollen shut. I texted a picture to my mom and asked if she could be allergic to Benadryl.

Feb 4, 2012  A snapshot of how swollen and puffy her eyes sometimes were. We later learned this was a result of protein leaking out of her blood vessels due to a very cancer-filled and overworked kidney.

Feb 4, 2012
A snapshot of how swollen and puffy her eyes sometimes were. We later learned this was a result of protein leaking out of her blood vessels due to a very cancer-filled and overworked kidney.

On Tuesday, the children and I attended our weekly homeschool classes, and once again the nursery worker told me at lunch that Emily had fallen asleep in her arms in the midst of the crazy playroom. As soon as I dropped the kids off at home that afternoon, I took Emily back to the doctor. But yet again, he had no answers. As I strapped Emily into her carseat, I called my mom. I sat in the parking lot, crying, insisting that something was wrong with her and I didn’t know what to do, but something was wrong. My mom had been doing some research on her own, talking to other nurses, and she told me they all decided (unofficially) that Emily needed blood work drawn. My mom thought she was probably anemic, but we wouldn’t know for sure without labs. So I went home and googled anemia, and sure enough, many of her symptoms could be attributed to anemia. Bruising, lethargy, loss of appetite. One site I read listed anemia as a common diagnoses in children, because of their lack of iron due to picky eating. It also said anemia was sometimes a sign of leukemia, but while I remember reading that information, it did not even occur to me that it could apply to Emily. I was certain she was anemic due to an iron-deficient diet, and I called my mom and asked her to go with me to another clinic the next afternoon to ask for labs to be drawn.
Wednesday morning, Feb 8th, Emily woke up with her right eye completely swollen shut and a huge black and blue goose-egg bruise above her right ear. But the kids had a Valentine’s Day party to attend, and by the time we left the house, her eye was back to normal. At the roller skating rink, Emily tried to skate, but quickly got tired and soon fell asleep in her aunt’s arms. Some of the other moms and I discussed what had been going on –they had all been watching her increasing symptoms throughout the weeks too –and they encouraged me to take her in. Through tears, I told them I was taking her to the doctor that afternoon, and they all assured me they would pray for answers.
Later that day, after a nap for Emily, I told Jason I was taking her to the doctor for blood work. Having the same wait-and-see attitude as me, and having just been laid off, he was concerned about finances and didn’t want me to go. While I wanted to respect his wishes, I knew. I just knew she had to be seen. So I took the other children to my mother-in-law’s and went to pick up my mom. At my mom’s house, Emily entertained us all by playing the piano, while we looked up free clinics that saw children. But when I described Emily’s symptoms to the advice nurse and said I thought she was anemic and wanted labs drawn, she said, “Ma’am, your daughter needs to see a doctor, and we only have a nurse practitioner here. You need to take her to an emergency room.” I hung up the phone sobbing and shaking, terrified by her urgency. So my mom and I quickly packed Emily into the car and headed to the ER.

Playing piano with mommy

Playing piano with mommy hours before being diagnosed

On the way, Emily happily sang and played in the backseat. She was wearing a sunny yellow shirt and had a fun bow in her hair. And while she sang and kicked her feet, she cheerfully tore her bow to pieces. More than once I looked at her and told my mom that I felt silly taking her to the emergency room when she was acting so normal. It felt like those times when something is wrong with your car, and you take it to the mechanic only to have it work just fine. I thought we should maybe just wait and take her back to her regular pediatrician the next day –the one I had taken her to see as a baby. But my mom said we were already on our way and reminded me how worried we had been, and even if Emily was fine right now, she hadn’t been fine too many times before. That’s why I listen to my mom.

When we got to the Emergency Room and checked in, I didn’t even know what to tell the receptionist. I think I said something like, “She’s been acting different and tired and has a lot of bruises, and we’d like labs drawn.” We were ushered into a room and met with a nurse who took her temp and blood pressure. Then we met the doctor and proceeded to recount Emily’s symptoms. Again, I felt silly, like I was over-reacting. I explained about the puffy eyes (which she no longer had, but we did show the cell phone picture), the loss of appetite, the lethargy, the unexplained pain, the discontinuance of walking (though she was walking just fine in the ER room), the lack of energy (even though she was laughing and playing right then), the bruises, and The Fall. That’s what I was most concerned about. I had been silently worrying that the fall she’d suffered a couple weeks earlier had been worse than I thought and she was bleeding into her brain. We laid her on the bed so they could do a physical exam. The doctor felt her stomach, checked her legs, and looked her all over. During this exam, we noticed a few teeny, tiny red dots on her bottom that looked like little pin pricks. My mom said they were petechiae, small spots caused by bleeding just under the skin. A couple nurses came in to draw labs, and we had to hold Emily down as a needle was inserted into her vein. Of course she screamed, and as she did, more petechiae popped up along her forehead. An x-ray machine was also brought in to see what her chest looked like. Then we were told it would be about an hour before the lab results came back.
We had changed Emily into a tiny hospital scrub before the physical exam, and my mom and I joked about sneaking it home because she looked so darn cute in it. We laid a hospital blanket on the floor to sit on and I handed Emily some board books and my wallet to play with. While we waited, other doctors kept coming in to hear us repeat Emily’s symptoms. Each time I explained everything, I felt silly. And each time my mom reassured me it was right to bring her in. I vacillated between being really worried that she had injured her brain to being sure that they would tell me she was anemic and send me home with iron supplements.

Feb 8, 2012  In the ER waiting for the lab results, minutes before hearing the diagnosis.

Feb 8, 2012
In the ER waiting for the lab results, minutes before hearing the diagnosis.

But then, at 9:15 p.m., Dr. Owens came back into the room, put her hand on my shoulder, and said, “We need to chat.” In my peripheral vision I noticed a nurse follow her in and shut the door. I looked at my mom and we sat on the bed with Emily in my lap. Dr. Owens looked me straight in the eyes and said, “Emily’s blood work came back and it’s abnormal. Her red blood cells and platelets are too low, and her white blood cells are too high, and there are abnormal white blood cells. She has leukemia.” I turned to my mom and we both choked out a sob, then I turned back to Dr. Owens as she asked me, “Do you know what leukemia is?” I thought of the St. Jude’s billboard and said, “When I think of leukemia, I think of sick kids with no hair.” Again, she looked me in the eyes and said, “Yes.” Then she told me I wouldn’t remember anything else she said, and she was right. I’m sure she explained a little about what would happen, but after a few minutes, she and the nurse left and shut the door, and my mom and I fell into each other’s arms and wailed with grief. It seemed like we cried for hours, but eventually the nurse brought in a phone we could use to start making calls. We, of course, tried Jason first. When we couldn’t reach him, we called my sister (Auntie Plum) and had her drive over to my house to break the news to Jason in person. His initial response was anger and absolute disbelief -as in, “They are wrong, and I’m coming to bring her home.” Dr. Owens said it is a very common reaction to such difficult news. But once Jason arrived at the hospital and saw Emily, he gave her completely into God’s hands and has been one of her strongest advocates since. Now he spends much of his time helping other children and families through participation with the Children’s Miracle Network.

After we made our phone calls, more doctors and nurses came in, blood and platelet transfusions were begun, and we were wheeled upstairs to the PICU. That night, as Emily received life sustaining blood and was constantly monitored (and Jason went home to be with our other children), my mom and I tried to get some sleep. But we spent most of the night not sleeping –instead we cried, whispered, wondered, and thought. Our minds raced with questions.
Emily had her first bone marrow biopsy on Friday, had her central line placed on Monday, and had her first spinal tap with chemo on Tuesday –less than one week after being diagnosed. She spent two weeks in the hospital after being diagnosed, was released for 24 hours, and then ended up back in the hospital for another 11 days with an infection. We asked a lot of questions, received a lot of answers, had many visitors and helpers, and prayed and prayed and prayed. I know that God has walked with us through all of this and that He fashioned Emily from conception to be able to handle this road. Out of our five children, she has always been the feistiest, and that is what’s needed to beat this disease. That and God.

Christmas 2012

Christmas 2012

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3 responses to “How it Began

  1. Pingback: One Whole Year! | emilyannelove

  2. I know this was hard for you to write and I’m glad you did. That whole few months last year is such a blur. The week after Emily was diagnosed, even more so. As my mother-n-law prayed over me the night we learned of Emily’s diagnosis, we continue to pray now: Psalm 91: 1-16. Never forget that God has a plan in all this and when you grow weary, “He will cover you with his feathers, and under his wings you will find refuge”. Love you forever and NVGVUP!!

  3. Thank you for writing this. You, Emily and your family will continue to be in my prayers.

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