Megan’s Story

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I’ve decided to tell a different story this year: a story of self-advocacy and advocacy on behalf of your family members. This is a very long story, so climb aboard and hold on tight. In spring and summer of 2007 (I was eight turning nine in August), I had aches and pains all over my body. I felt tired, sluggish, and beat 24/7. I remember I had to go to a summer program where we did activities and had field trips almost every day. I had severe pain in my shins and ankle, but since the doctors diagnosed it as shin splints and Achilles’ heel problems, I still had to go on the hikes with my summer camp. I was miserable. I kept getting these pains, but then they started coming along with a fever. Every time I went to the doctor, they said, “Oh, it’s a virus suppressing her immune system.” The people in charge at my summer program, the “nurse” at my school, and even some family members thought I was being dramatic, lazy, or faking it to get out of doing things.

School started, and these instances started becoming more frequent. I was constantly going to the doctor, but it was always a “virus suppressing [my] immune system”. My mom told them that I looked pale, and they would say, “Well, that’s just her natural complexion.” In November, at nine years old, I weighed 92 pounds, so obviously the doctor wanted me to get bloodwork done to check my cholesterol and triglycerides. They ordered a CBC with differential/platelet and a lipid panel. My WBC, RBC, hemoglobin, hematocrit, platelets, neutrophils, and monocytes were all low. My lymphocytes were high. All of the low/high results were bolded, and the alert result was italicized. Apparently the only remarkable part of my bloodwork results was the lipid panel (pen marking to group it), and specifically my triglycerides (had a pen-drawn arrow pointing to them) because they were high. So, this was obviously more concerning than the fact that I was anemic, had CBC results that signified a major hematologic/immunologic problem, and had the aches, pains, and fatigue that, combined with the CBC results, could have signified that I had leukemia. But no, to the doctor, I was just an overweight kid.

In early December, I went to a birthday party at Bounce U and could not even play with other kids for one minute before I got completely winded and had to sit out. At school, my teacher noticed that there wasn’t something right with me, so she let me stay with the fifth graders and rest while my fourth grade class went on trips to the Baum School of Art (and if you know me, you know I love art and crafting, so that was a big hit for me). I went to New York to visit my family, and we went to my cousin’s grandmother’s house for dinner. The entire trip, I was not hungry. I only wanted chocolate milk and I slept wherever we went. While we were at the grandmother’s house, I slept while everyone ate my favorite meal. I told her I wasn’t hungry and that I just wanted to sleep. She told my mom she was worried about me and said, “This isn’t Megan. There is something very wrong with her.”

Closer to Christmas, I was extremely pale and no longer had my bubbly personality. I was a shell of the child I used to be. This is the day I remember vividly. I woke up and told my parents I didn’t feel well and didn’t want to go to school. Since I had already missed so much school (and the doctors couldn’t “find” anything wrong with me), my parents told me to just try going to school for a bit, and if I still didn’t feel well throughout the day, that I could go to the nurse (who was the secretary) and get sent home. So, I went to school, but I still wasn’t feeling well. I could barely stay awake in class, and I assume I did not look good, because my teacher came up to me to tell me to go to the office to get sent home. I went down to the office, knocked on the door, and hadn’t even made it into the office when the secretary said, “Oh, you aren’t feeling well? Blow your nose and go back to class, you’ll be fine.” I was indeed not fine. I went back to class and my teacher was SHOCKED that I wasn’t sent home, so she had me sleep in the back of the class until the end of the day. My dad picked me up from school instead of sending me to the after-school program. He was worried since I still wasn’t feeling well and took my temperature as soon as we got home. 103.7°F. He immediately called my mom, and she came and took me to the hospital. This is where she finally put her foot down. She said that this cannot just be a virus anymore; that it’s been too long and too frequent. When the doctor (who was a different doctor from the one who ordered the first round of bloodwork) tried saying that my pallor was normal, she said that she is my mother, she knows my normal complexion, and this was not it. She asked him what my bloodwork from the previous month had said, that maybe that would help shed light on my situation. The doctor left the room to check on my previous bloodwork (you know, the one with all the low, high, alert results) and came back paler than I was. “Well, her counts were a little low last time. How about we send her for more bloodwork and go from there?” So, that’s what happened. I got the bloodwork done and the same night, Friday, December 21st, the original doctor told my parents to come to the office straight away. When we got there, he asked to speak to my parents privately, but I said, “If this is about me, I want to stay.” I sat on my mom’s lap the whole time and there was not one mention of the word cancer, but my mom knew. I could feel that she knew more than what was being said; she had already figured it out but didn’t want it to be true. The doctor said there was a room waiting for us on the fourth floor of LVH-Cedar Crest (which would be my home for the next 21 days and my most frequent vacation destination over the next couple of years). When we got to the hospital, it was super late on a Friday, so I had to wait until Monday morning (Christmas Eve) to get my bone marrow aspiration and spinal tap done. I had Acute Lymphoblastic Leukemia. Once those results came back, the doctors told my parents that if I had gone several more weeks undiagnosed, my prognosis would not have been as good as it was.

If my family, my mom, my dad, and my teacher had not fought that hard for me in that month before I was diagnosed, I don’t know if I’d even have the chance to share this story with all of you; to be a part of a community that is so welcoming and truly feels like family. This may sound strange, and I don’t know how many people will understand this, but I always say that the Christmas I was diagnosed was the best Christmas I’ve ever experienced. Here’s why:

My world became so much larger when I was diagnosed. I felt so much love that Christmas with everyone coming to visit me. I made so many new connections that I will forever be grateful for. I used to love going to clinic and used to try to schedule my visits around PCFLV’s Chemo Circus days because, honestly, who doesn’t love a balloon animal from Tootsie the Clown and having their face painted as a dalmatian? Now I work as a scientist at a local biomedical company, and I feel so privileged that I am now able to give back to the organization that has provided me with so much throughout my treatment and survivorship.

Closing notes: Fight for you, and fight for those whose voices are not yet loud enough to be heard. Don’t ever feel like you can’t speak up because doctors are smarter than you because, SPOILER, doctors are human, just like you and me, and we all make mistakes. I share my story so maybe what happened to me won’t happen to anyone else.

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Written by Megan

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Please consider donating in Megan’s honor to support PCFLV's mission.

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Please also consider helping local kids with cancer by donating blood at Miller-Keystone Blood Center:

https://donor.giveapint.org/donor/schedules/centers