Remembering Nick: Leukemia

my brother's leukemia and me
I want people to read my story and know that you are never alone. Someone has almost surely gone through the same struggles you are experiencing.
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Beep...  Beep...  Beep...  Beep...  His chest rises and falls, rises and falls, too perfectly. I hear sniffles, soft cries, the clicking of various medical equipment.  I realize this is the last time I will see him alive and it absolutely breaks my heart. He is only 7 years old – too young to leave us.  It’s after midnight and I’m at the hospital. He is hooked up to a ventilator, which is helping him breathe, but his heart is still beating. Mary, his nurse, tells me he was waiting for me to get to the hospital and I can tell him its okay for him to “go.”  It’s okay for him to pass on.  The rest of my family did the same thing earlier, while I was en route to the hospital. 

Tears dripping down my face, I grab his hand, thinking of what I want to say. “Nick, it’s OK for you to leave. You won’t have any more pain. I love you so much and you were the best brother I could’ve ever asked for.”  I can barely get the words out without sobbing.  The pain in my chest gets bigger and it’s hard for me to breathe. Within minutes, the steady beating of his heart stops and all we hear is a long beep – he’s flatlined. Time of death is 3:00am, March 31st, 1996. I am still holding his hand – it’s still warm.  I can’t believe just seconds before he was alive, hours ago I was arriving at the hospital, days before we were at home and I was a typical big sister, annoyed that her little brother was getting into her stuff AGAIN.  How did we get here??

Nicholas William Schaufelberger, with all 29 letters of his name, was born at 8:34am on February 16th, 1989. As an only child amongst my friends with multiple siblings, I wanted nothing more than a little brother or sister. I could finally have someone to play games with!  Someone with whom I could share my deepest, darkest secrets only 7-year-old girls had. 

The role of “older sister” was a task much more daunting then I had ever anticipated.  I had mixed emotions of this new member of our family. Why was he getting so many presents when he couldn’t even open them? I LOVED presents, both opening and receiving them, but the number I received in comparison to Nick’s were miniscule. My parents let me open some of his presents. When I realized that what was inside those pretty blue wrapped packages wasn’t for me, I couldn’t have cared less. Amidst this newfound jealousy, I also had an incredible amount of love for my new baby brother.  When our baby pictures are placed side by side, we look identical.  He was so tiny and cute, and I loved knowing I had the responsibility of helping to take care of him. 

The house we grew up in was simple, built in the countryside of a small farming community. Surrounded by pine trees, my parents built a ranch-style home prior to my birth.  Built with the blood, sweat, and tears by my parents and extended family, it was truly a “home.” It had 3 bedrooms, 1.5 baths, a kitchen with attached dining room, and a cozy living room with French doors that extended onto the back patio. My dad worked for the road commission, and my mom stayed at home with my brother and me. 

As Nick grew older, I began to learn younger siblings aren’t as great as my dreams had implied.  Prior to Nick being born, I was always so envious of my friends who had siblings. That’s like having a built-in family playmate all the time, right?!  What’s not to love about that?  As I began my awkward, weird hair, baby-doll dress wearing, huge glasses toting middle school years, I also learned how important it is to be “cool.”  Cool is B.U.M. Equipment sweatshirts and Guess jeans.  Cool are sour candies and gumballs with exceedingly and dangerously high amounts of pigment that stain your mouth.  On the flip side, it is not cool to come home from school and find your annoying little brother playing with your Gameboy, completely messing up your saved game.  It is not cool that he can pinch me whenever he so chooses, but when I do it back, I get sent to my room.  He did it first! 

In the winter of 1993, I was in 6th grade and my brother was 4 years old. One day after school, I decided to go home with my friend Rachel who lived in town. I didn’t ask my parents first, I just assumed it would be okay. I’d only be there for a couple of hours anyway.  When I got to Rachel’s house, I called my parents to tell them they’d have to pick me up at her house before dinnertime. To say my mom was angry is an understatement. I remember her yelling at me for being so inconsiderate and selfish, doing whatever I please. I knew in the back of my head when I made the decision to go home with Rachel that my parents might be a little mad, but I didn’t think it was really worth my mom being so irate!  She told me I had to come home immediately, and she’d be at Rachel’s house in 10 minutes. I had that awful, heavy pit in the bottom of my stomach knowing what was in store for me when my mom showed up.  That night was going to be awful, that was for sure, but I hadn’t known the true reasons why my mom was so upset. 

You see, about a month before this, I came down with a virus and seemed to have passed it onto my brother. After taking an antibiotic, I got better, but my brother took two rounds of it and was still sick. He had night sweats, complained of stomachaches, and just really couldn’t kick the virus as easily as I had. Our family doctor referred him to a pediatrician who decided to do blood work. His white blood cells were quite high and he was referred to yet another doctor, a pediatric oncologist. That day, the oncologist performed a spinal tap on Nick to test his bone marrow and my family’s worst nightmare came true.

When I got home, I remember my parents telling me to come into the living room; they had something to tell me. My brother didn’t have a virus after all – he had leukemia.  Acute Lymphocytic Leukemia. I had never even heard that word before – what was leukemia? My parents told me Nick had cancer. That word resonated with me. My dad’s mother, “Grandma next door” had breast cancer a few years before, and I was scared to go around her for fear of “catching” it. I knew people died from having cancer. I knew people’s hair fell out because of cancer. All of that resentment and anger I had toward my brother for getting into my personal things vanished into thin air. Guilt had replaced it by the truckload. A movie reel of memories started racing through my mind of all the bad things I had done to him. All the bad things I said about him. In fact, I’m quite certain I wished, during a fit of rage, that he were never alive. Everything seemed so petty at that moment. All I could see was his angel face looking back at me, like he used to as a baby. 

I dreaded even having considered this thought, but I had to ask my parents.  “Is he going to die?” Sadness sat alongside guilt in the pit of my stomach as tears began rolling down my 10 year-old cheeks. My parents told me he had an 80% chance of survival, and the doctors told them that if a child were to get cancer, this is the one to get because of the high survival rate. My parents assured me that although Nick might get sick, his chances of surviving were much higher. Things moved quickly from that point on. The next day, Nick went back to the hospital to have surgery on his chest to get a port (or, as Nick called it, a “pork”), where he would receive his chemotherapy later that day, along with all other future visits. 

Leukemia had stolen Nick’s white blood cells. Well, the chemo to treat leukemia had killed the white blood cells, necessary to fight off infectious disease. Since I was in school and exposed to all sorts of sicknesses, this increased the chances of Nick getting sick.  My parents took the liberty of hanging a sign on our front door – “DO NOT COME IN IF YOU ARE SICK!” complete with yellow smiley face clipart. The sign embarrassed me, but I knew it was true.  Something as simple as a cold could put Nick on his deathbed.  I couldn’t let that happen, so as a result, I had to sacrifice my social life. 

Socializing was a top priority for me in my middle-school years, as it is for millions of other awkward pre-teens.  My circle of friends would always go over to each other’s houses, eat dinner with their families, have girls-only sleepovers discussing the cuteness of Brad or Ryan or Steve or Alex or whoever else was the catch of the day. I could not. 

Well, I take that back. I could have friends over if they weren’t sick or feeling any symptoms of getting sick, if they put on a mask as soon as they stepped in the door, and if they washed their hands with soap and warm water right after taking off their shoes.  They’re lucky we didn’t own any sanitized clothing, otherwise, they may have been subjected to that too.  Although the mask could come off once we were in the sanctuary of my bedroom, if they had to leave my bedroom to go to the bathroom, the entire process would begin again.  Needless to say, it wasn’t much fun for my friends to come over. 

I played volleyball during my 7th and 8th grade years.  I’ll never forget a comment from one of my so-called “friends” who also played volleyball.  We were at practice after school.  I was standing next to Emily, waiting our turn to spike the volleyball over the net to our coach.  There were a few other girls in our clique talking with us, and one of them made a comment about hanging out after practice.  Each girl was offering her house as a meeting point, when Emily said, “Well, we know we can’t go over to Cori’s house because her mom won’t even let us in if we have a sore throat!  She’s so strict…”  these were girls I thought were my friends.  I  remember coming home that night crying to my parents. 

Unfortunately, this was only the beginning of the discrimination our family felt.  Close friends of my parents stopped talking to them.  My dad’s mother thought Nick was a nuisance.  The odd times when my mom went grocery shopping with my brother and I, strangers’ eyes were glued to his balding head and mask over his face, keeping out germs.  People would actually point and stare. Some of them laughed. Nobody seemed to care that this small child had a killing disease inside of his bloodstream and might die.  Nobody cared that I couldn’t go school shopping the week before 8th grade began because we didn’t have enough money. 

The medication costs were killing my parents, financially, not to mention this disease was also eating away at my parent’s marriage. Nobody cared that this little boy couldn’t play in the leaves like every other child in the fall because of the mold growing on the dying leaves. In fact, he couldn’t play any contact sport because if he got hit, the bruise would take forever to heal from his low platelets. He was limited to games inside of the house.  Instead of experiencing school for the first time in a kindergarten classroom, he was home schooled. When he began first-grade, it was through a speakerphone from our house to his classroom. The teacher mailed home activities for him to do.  He never got to make friends in school like “normal” kids do.

Really, the next three years are a blur – I can hardly remember my life then, let alone details of what happened.  As I realized through therapy just a couple of years ago, I think I blocked out these parts of my life because they were so hard to live through.  I remember being quarantined to my room the few times I got sick. I even got a television set in my bedroom with cable.  I remember having to put on gloves and a mask just to go to the bathroom, then being rushed out by my mom with bleach and a can of Lysol disinfecting the bathroom and killing any germs I may have left behind.  I remember tension so thick between my parents you could cut it with a knife.  I remember having to stay at my aunt and uncle’s house while my parents were staying at the hospital with Nick.  I remember the stale food and disinfectant smell of the hospital when I visited Nick.  I remember seeing Nick hooked up to so many IVs of medicines with names I actually learned how to pronounce.  I remember coming home from school and opening the door to hear wailing screams coming from Nick. 

It was time for his oral chemo, which was a sick yellow color. It was in a syringe and my dad had Nick on his lap, trying to get his mouth open so he could swallow this medicine.  Nick didn’t want to do it. It tasted horribly and he had canker sores all in his mouth and throat, another wonderful side effect of chemotherapy. “It hurts!” he kept screaming. He was on Prednisone, a steroid that made him gain 20 pounds in order to offset the nasty side effects of chemo, one of which is weight loss. The spiked hair he once had fell out.  He would find it on his pillow. What’s left is the fuzzy, short, mousy-colored brown trying to stick through his naked scalp. He lost his eyebrows. None of his clothes fit. He hated looking at himself in the mirror.  I think of the trials he went through in his short life and realize many of us don’t experience that much pain or sickness throughout our entire lives. 

The determination he had was a true test to his character. Nothing would get in his way of living and loving life to its fullest.  He loved hard rock, especially “Black Hole Sun” by Soundgarden.  He knew he might die from this disease and insisted on a black casket. He was always playing tricks and pranks on us. 

Unfortunately, he just couldn’t beat cancer. He went through remission twice, meaning, the leukemia was gone. The third time it came back, the next course of action was a bone marrow transplant. When my brother relapsed for the 3rd time, I was in my freshman year of high school. After being put on the bone marrow registry, a match was actually found. My parents were going to move to Seattle with my brother to go to a well renowned children’s hospital for the transplant and I was going to move in with my aunt and uncle.  My brother’s oncologist wanted his white-blood count to go up before they proceeded on with the transplant when he got pneumonia.  The pneumonia put him in the hospital where he died. 

I remember at my brother’s funeral when he was lying in the black casket with his two favorite stuffed animals, he looked like he was sleeping – finally pain free and at peace.  It was the first time I had ever seen a dead person. I’ll never forget grabbing his hand the same way I did in the hospital that night and it was ice cold. For me, that meant it was truly over – the coldness of his skin.

Three years later, my parents got divorced.  My aunt and uncle I always stayed with got divorced. Another aunt got (and survived) breast cancer.  I learned who my true friends were when I could call them and cry and cry and they would understand my pain.  Many didn’t make the cut.  As I sit here 14 years later writing this, it still hurts, remembering all the pain and sadness we went through. 

When I think about that time of my life, I remember always feeling weighed down and sad, like a dark cloud followed me everywhere.  I kept everything inside because I didn’t want to bother anyone with my feelings.  They already felt plenty sad and I didn’t want to be the cause of even more sadness.  I guess that’s the price I’m paying now – understanding these feelings and expressing myself. 

I look at my perfect 3-month-old daughter and wonder if there could be something wrong with her that just hasn’t yet surfaced. Could she get leukemia or breast cancer or some other horrifying disease?  When she smiles at me, that huge, toothless grin, she is so innocent and pure and her life is so simple. I never want her to go through what my family went through. I will keep her away from cigarette smoke and give her organic milk and make sure she is always wearing her seatbelt but I know I can’t protect her from everything and that breaks my heart. I will love her as much as I can no matter what happens in her life. 

I want people to read my story and know that you are never alone. Someone has almost surely gone through the same struggles you are experiencing. I can only hope that I will provide comfort to someone through my story, because that’s all we really want—
 someone to understand our struggles, comfort us when we’re down, and love us no matter what.

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