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This Is Childhood Cancer

It’s a few days after 8th grade graduation, on a sunny day in early June, and you’ve just turned 14.  You’re going for an eye exam because of the headaches you’ve been having, but end up being checked into a hospital. 
 
 
You have no idea what’s going on...But you  aren’t too worried, you probably have something weird like a bug lodged in your eye. You can’t wait to tell your friends about this!
 After an eternity of tests, the doctor comes to tell you about a large tumor growing in your brain. You didn’t foresee that coming, but brain surgery is a cooler story to tell your friends....who actually start pouring into the hospital within an hour.  Relatives and even strangers come by with gifts and cards and treats, and you decide to leave the worrying to your parents, and lap up the celebrity status and attention. 
 
 
You don’t know it yet, but - 
This is childhood cancer. 
 
 
Your siblings camp out on the waiting room floor the night before your surgery, and, as always, there’s a comical tale to hear. You’re glad they are there to keep the mood light, because you’re parents keep crying. 
 
 
Brain surgery for you falls on Friday the 13th. You make  a joke about that when the nurses come to take you down to anesthesia. You hope your surgeon isn’t superstitious, because you are getting a little nervous. Your family hugs and kisses you as if it’s the last time they will see you. 
 
 
This is childhood cancer. 
 
 
The days creep by in the hospital room you were moved to after surgery recovery. Family members take shifts, never leaving your side. Through a drug filled haze, you watch the fireworks by the Arch out your window on the Fourth of July. The visitors now are mostly for your parents- you imagine  it’s hard for your peers to feel comfortable visiting someone who is now unable to speak, walk, bathe, or feed themselves.
 
 
The Doctors tell your parents they won’t know the extent of any brain damage until the swelling stops. There’s not even a guess on how long that will take, so they pump you full of steroids and eventually send you home, where your family can take over caring for you. Someone has to bathe you. Someone has to hold your urine jug for you. Someone has to help feed you. Someone has to teach you how to play video games, and make the correct facial expressions during social interactions. Someone has to teach you to walk. 
 
 
This is childhood cancer. 
 
 
You used to be the chubby funny kid who enjoyed doing the truffle shuffle, 
but now you don’t recognize your moon-face and frail body, or the way your voice sounds. Slowly you are able to care for your immediate needs again, but you feel like you’ll never get back to being you.
 
 
When you finally start feeling better from your brain surgery, you find out your cancer treatments will begin. You aren’t sure what to expect at first, but an empty oxi-clean bucket to get sick in becomes your best friend, and food becomes your enemy. 
 
 
This is childhood cancer. 
 
 
You spend over a year avoiding public places in fear of catching something with your lowered immune system, but your video game skills have gotten really good again. You’ve been doing some home study with teachers, but actually wish you could be at the high school with your friends. You’re over being sick! 
You make it through treatments and can finally join your peers at school....with a giant scar on the back of your head where radiation permanently killed your hair follicles, and your teeth discolored from chemo and radiation. Your off balance gait keeps you walking slow, and delayed  reaction times prevent you from passing behind the wheel in Driver’s Ed, and but you are glad to be out of your house and back to life with your friends. 
 
 
This is childhood cancer. 
 
 
Even though they say your cancer has an 80% recurrence rate, your doctor appointments aren’t as frequent now, and they are always filled with good news....so your siblings move away and on with their lives. You are proud of them, but after the last couple of years, you’re accustomed to having one or both around constantly. The new void is lonely. 
 
 
This is childhood cancer. 
 
 
You attend early morning church classes with your friends, and join in discussions about future plans like marriage, careers, and children. Life is more normal now, and you feel like a normal teenager. Eventually, you  find out you’ll be an Uncle, and that you get to help name the baby. 
 
 
It’s now senior year, and though you tire out easily, (what busy teen doesn’t?)
you are eager to apply for schools and prepare for a church mission, just like all your best friends. Finally, your college acceptance letter comes!!!  Your mom says as long as your oncology team is comfortable with you leaving the state for school, so is she. 
 
 
This is childhood cancer. 
 
 
Your largely pregnant sister comes home to see you graduate high-school. Unfortunately, it happens to be the same day and time as your brother’s undergraduate commencement ceremony, so your family is torn which to attend, including him. No one says it out loud, but you know they never thought this day was possible, and don’t want to miss it. 
 
 
At a celebration lunch after graduation, you lay your head down on the table. You’re so happy it’s all over and you have the summer to sleep in. These last four years have been exhausting. 
 
 
This is childhood cancer. 
 
 
A few days after 12th grade graduation, on a sunny day in early June, and you’re about to turn 18. Your parents and sister take you to get the “all clear” from your oncologist, so you go off to college in the fall. It means another MRI, but you are totally used to those by now... plus, you have a lot of exciting things to think about during your MRI, so the the time should fly. 
 
 
You and your sister hang out in the exam room as your parents confer with the Dr. about your aftercare once you turn 18. Your sister is always able to make you laugh, and you’re both giggling uncontrollably at something when the door opened and your oncologist & parents come in.  Already in a good mood, you eagerly  share your college acceptance letter with your Oncologist, who always has the kindest eyes. He isn’t mirroring your excitement, and you realize now, neither are your parents. 
 
 
You hear the words: “cancer has come back”, but nothing is going to damper your mood today! You tell him that’s ok, you’ll just have to start college a semester later than your friends. You remind them you’re a pro at chemo and radiation, and this is a bummer, but you’ll get through it again. 
 
 
This is childhood cancer
 
 
Your oncologist quietly tells you  it’s worse than last time, while your parents are staring at the floor. Your sister is asking questions now, and you hear the words “inoperable” and “untested clinical trials”. Although they are all looking concerned, you’re still confident you’ll make it through. You feel invincible, after beating cancer before. 
 
 
A few days after your new diagnosis, you turn 18. You realize now the cancer really is a lot worse than 4 years ago. Instead of being one mass in your brain, it’s spread through your brain and all through your spinal cord. The prognosis is not good at all. Since you’re legally an adult, you get to decide wether you want to try treatments to slow down or shrink the tumors, and of course you say yes!! 
 
 
This is (still) childhood cancer
 
 
It’s July now, and you are doing a round of experimental chemo. Because your cancer started when you were a child, you get to keep your same pediatric cancer team. There is a new Dr though, who wants to try a new medication... a trial. After a couple days on it, you  pray it’s killing the cancer, because you feel like it might actually be killing you.
 
 
You are in and out of reality. You aren’t sure yet if you are dead. You are having the worst thoughts and dreams, and you hurt all over. Your mom says you’re hallucinating. You know your parents and brother are there, but you think you’ve heard someone say your sister has gone into labor, 800 miles away. You vaguely remember your mom was supposed to be there for that. 
 
 
This is (still) childhood cancer
 
 
At some point, you decide to stop the experimental poison, and go home. Your parents are at odds over this-  Of course, they want you to live longer and fight with any treatment possible, but it’s hard to imagine the rest of that life being spent in in a hospital room, barely hanging on to life. If you’re going to die, you want it to be at home, playing video games. 
 
 
Your sister comes for a month, and you meet your nephew. You learn he almost died during birth, which is the same time you were almost dying from chemo. You’re happy you both made it, and love holding & feeding him.You’re  grateful for this time as an uncle, especially since you know you’ll never be able to grow up and have children of your own. 
 
 
This is (still) childhood cancer.
 
 
 
Your friends leave for college. Your brother leaves for graduate school. Your sister and nephew go back home. The loneliness and reality of everyone moving on without you is sinking in. 
Sometimes on long weekends, you get to see your brother, and once, you travel to go see your sister and nephew. While there, you ask her to help you with your will and to write out your last wishes. She manages to paint a hilarious scene of how certain relatives might react to the unconventional funeral service you’ve come up with, and you make her vow to make it happen. You’re both laughing, and it feels like the time she helped you plan one of your birthday parties. You almost forgot you were just planning your funeral. 
 
 
This is (still) childhood cancer.
 
 
Thanksgiving comes, then Christmas. No one has to tell you it’s probably your last. You enjoy the holidays as much as possible, but it’s becoming harder to laugh and smile.Time with friends and family is nice, but everyone avoids the elephant in the room. 
 
This is (still) childhood cancer.
 
 
In the new year, you start having weird sensations and pains throughout your body, and you’re getting a little unsteady. By the end of February when your sister & nephew come to visit, you are starting to use a walker to make it around the house. You still love their visit, and spend a lot of time cuddling, which doesn’t require much energy, something you don’t have much of anymore.
 
 
This is (still) childhood cancer.
 
 
After your mom checks in with the Dr. and tells him about a few symptoms you’ve been having, hospice has been notified. You don’t want your life artificially prolonged, but you do want to be comfortable until the end, whenever that will be. You sort of look forward to weekly hospice visits, because they mentioned art therapy, and maybe massage. It will be a pleasant distraction after your sister leaves. 
 
 
This is (still) childhood cancer.
 
 
On a Sunday afternoon,  Hospice sends a nice photographer to take free family photos. You don’t really want to do it, but you know they aren’t really for your benefit. You don’t really smile in any photos, but your brother got you to laugh a little. You’re not trying to be rude, you’re just tired, have a headache, and sad you are dying. 
 
 
That night your siblings and mom hang out in your room. Your mom and brother keep crying, and you feel obliged to comfort them with talk of heaven and peace and not being in pain anymore.You say you aren’t afraid, and they shouldn’t be either.
 
 
This is (still) childhood cancer.
 
 
The next night, you confide in your sister that you are scared to die. She says she understands. This is the first time you’ve said it out loud, and it makes it feel more real. She starts to whisper similar things you’d said last night... about peace and heaven and no more pain, but gives up and goes over details for the great funeral you have planned. She goes over how she thinks some people will react, and  says she’s still working on finding hula dancers in coconut bras, and that makes you smile a little. You know she’s struggling not to cry, but honestly, so are you. 
 
 
This is (still) childhood cancer.
 
 
Your sister leaves town on a Wednesday. She promises to be back soon, maybe in a few weeks.  By that night, you can’t walk at all. The next day, you can barely see. By Friday, you can’t even force yourself to eat, and by Saturday, you don’t wake up until nearly midnight.....and by then, both your siblings and parents are in your bedroom. This confuses you, because your brother is in school at least  6 hours away, and your sister had just flown back across the country a couple days ago. They say you’ve been in a coma-like state all day, and you reply  that’s probably why you need to pee so badly. You share some laughs with them, thank your siblings for coming, then close your eyes again. Everything is so heavy now in your body, it’s hard to even think, let alone stay awake.
 
 
This is (still) childhood cancer.
 
 
When you do open your eyes again, it’s sunny in your room, and they tell you it’s Sunday. You’re still groggy, and it takes a couple minutes to register who is there and what they’re saying, but you do your best before the heaviness takes over again. 
 
 
Time is irrelevant now, but you go through phases where you think you hear people coming in and out of your room, crying, praying, saying goodbye. You want to smile and tell them thanks, but you feel so tired you’re pretty much paralyzed. You know their voices though...friends from school. Friends from church. Family. You are starting to wonder if you’ve already died, but you can hear yourself breathing- though not very well, and it’s taking all your effort. 
 
 
This is (still) childhood cancer.
 
 
Finally, all the voices are gone but your parents and siblings. It’s nice, having just those four there. Even though your parents have been divorced for roughly 10 years, you have a fun new step dad, a great brother in law and (of course) your cute nephew....there’s nothing like being surrounded by the first four people you ever knew. They are telling stories to and about you. They are telling you their favorite things about you. They are holding your hand, hugging you, and kissing your face. They are telling you goodbye.
 
 
This is (still) childhood cancer.
 
 
Everyone joins hands, your parents each take one of yours, and your mom says a prayer. She says they are glad for all the years they had with you, they are grateful the cancer didn’t take you 4.5 years ago, and that they’ve loved every extra minute with you, but don’t want to see you suffer anymore. Your mom says she is ready to entrust you to God’s care again. 
 
 
This is (still) childhood cancer.
 
They say amen, each give you a few more kisses, and leave the room. Only your dad remains. He has struggled the most with your decision to stop all treatments and your DNR, but here and now, he’s telling you he loves you, and it’s ok to go...you’re so tired, and these words are a relief. You take your last shallow breath, and you are free.
 
 
This is childhood cancer.

2 comments

  • Incredible story… many details I didn’t know. I hope you feel some level of peace getting the story out. You clearly have a beautiful and caring family. I pray for his eternal rest and your family’s peace.

    Sol
  • Amanda, I love you. I am so proud of you for sharing this. When we met, a few years after Alex’s passing, I soon learned about your super cool brother that was no longer with us. I heard stories from you and your parents about this kind, caring, and somewhat mischievous soul that I never met. I love hearing stories about him. I love the way you tell his story. Alex got dealt a bad hand while he was with us. We all die, but Alex was more aware of his fatality than most of us. Although the ending is tragic, his legacy was cemented well before his death in his attitude and thirst life. That legacy lives on by you sharing his story.

    Amanda’s Husband

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