A Memoir of Childhood Cancer
I was hesitant to write this post mainly because of how near and dear the subject is to my heart. I decided to write about this simply to educate those who aren’t familiar with the subject. They know of the word but they have never experienced the trauma first hand.
I decided to write this post because it is one thing to talk about the subject but it’s an entirely different thing to describe the subject.
That word brings chills down my spine. Whispering it seems like I am uttering a bad word on my lips. It doesn’t belong there.
I see the TV commercials asking for donations to Saint Jude’s Research Hospital. I see mason jars in restaurants with a small picture of a person inflicted by this disease, asking for help.
It will never happen to my family.
I remember being dropped off at the hospital from a school trip. I remember being told that my three year old sister had leukemia outside of the hospital doors. I remember the gutt-wrenching feeling. The feeling of not being able to breathe. The feeling of absolute hopelessness. It was the first time the word cancer had a meaning in my mind.
It was the first time the word death had a meaning in my mind.
I remember not leaving my baby sister’s side the whole night. I was the oldest after all, I was 15 years old to be exact. She looked up to me and I couldn’t even bring myself to move my feet.
I remember the look on the nurses faces; pity, sadness, confusion. I knew that it wasn’t every day they saw children inflicted with cancer in this hospital. It was a small city.
I remember my English teacher Mrs. Simpson who stayed with my other four siblings overnight so that my dad could be with my mom and sister. I will forever be grateful for all that my teacher did for us. I am positive she will be one of the few teacher’s names that I will never forget.
I remember the nurses printing off page after page about the type of cancer my sister had so that they could give me more information. They were worried about me. They saw me pace the halls when I was asked to temporarily leave the room. They wanted to give me positive statistics. They wanted to give me hope.
There was no hope in my eyes.
I remember waiting in ICU because they could not mercy fly my sister yet. Seattle was covered in fog.
I remember sleeping in the hospital cot only to be woken up by my sister’s screams. They needed blood. Lots of blood. They didn’t get the first prick in her finger right and had to take a second attempt. I remember watching as they squeezed her finger to get a tube of blood. I remember watching my little sister’s face withering in pain.
I remember hearing the shrieking cries of the loved one’s on the phone finding out for the first time.
I remember when my family finally got the word that the fog has lifted and Mercy Flight was ready for her. I couldn’t go, my dad couldn’t go, they could only fit my mother.
I remember watching as they raised the handle bars of my sisters bed. I remember standing with my dad, watching as they rolled my sister away to the elevator. I was not allowed to follow. I watched as the elevator doors closed behind my family.
Would this be the last time I saw my sister? When would I see my mom next?
I read every single paper the nurses printed out for me. There was nothing in there that said short-term. There was nothing in there that guaranteed life.
I remember returning to school even though I didn’t want to. We attended a small school and I knew that every person knew about what had happened. I remember person after person coming up to me and saying “sorry”. I remember everyone staring. People were scared to talk to me! They didn’t know how to relate with extreme and I was definitely hitting past extreme.
I remember receiving a phone call about my sister getting surgery for a chest port. This chest port would act as an access point for all the needles and pokes she was going to receive in the future. This chest port was supposed to “ease” her pain just a bit.
One or two months rolled by and I remember finally receiving the call that I could join my sister and mother in Seattle because she needed help. I was excited to finally be of help but nervous because this was the first time I would see my sister after being Mercy flown.
I remember walking through the Ronald McDonald doors for the first time and my mom and sister greeted us. I remember my stomach dropping to a new level of low because my sister did not look like my sister. She looked double her size, pale, and her baby fine hair had thinned.
I remember walking to the children’s hospital each day for doctors appointments. My sister could not always walk due to pain so we would push her in the stroller which at least got her out of the room. I remember that each nurse on the Oncology floor remembered us by our names. They did not have to look at their charts to figure out who we were. We were accepted, loved, and appreciated here.
I remember my sister receiving dangerous blood transfusions because her platelet count was so low. I remember her receiving anesthesia for a spinal tap once a week for a month and afterwards having to be pushed in a wheel chair. I remember that my mom checked the drugs the doctors used for the spinal taps before they would begin the procedure. My mom knew that their have been recent cases of accidentally switched chemo drugs and she knew that it had caused a child their life. The doctors knew my mom by name and were not offended that she checked every drug that entered my sister’s body.
I remember the night my sister was so sick she began throwing up. I remember that her legs hurt so badly from chemo that she could no longer walk. I remember her voice turning so raspy that the doctors had to change her chemo plan for a month.
I remember watching my sister’s skin stretch to an unbelievable measure. Her veins were beginning to show everywhere and her skin was forming a glossy, stretched look. “It’s from the dexamethosone” they would say. I didn’t know what dexamethosone was but I knew that my little sister was not looking normal. I also knew that other children were noticing that as well.
I remember the skin on the tips of my sister’s fingers began to peel and crack. She had trouble picking up objects and it hurt her to touch.
I remember meeting my little sister’s new friends. They had their own story and fair share of cancer.
Each one is now in heaven with Jesus. All except one.
I remember my mom combing my sister’s hair on the bed. It was the first time we saw a big chunk of her baby fine hair come out with the comb.
I remember my mom trying to keep my three year old sister still on the chair as we shaved off the rest of her hair.
I remember my sister crying because she thought she looked like a boy. I thought she looked beautiful and strong.
I remember slathering my sister in sunscreen as we were getting ready to leave for the park because the chemo caused severe sun burns. I remember making sure she had a huge hat to protect herself and a face mask to keep other children’s germs off of her. I remember my three year old sister trying to play with the other kids but two of them pointed asking “why does that girl look like a boy?”
I remember heading back to the Ronald McDonald house crying with my mom.
I remember my sister begging us to look for wigs. At three years old she knew that she didn’t look like the other toddlers her age. I remember my mom contacting Locks of Love only to be rejected because they do not donate to terminally ill children; they only donate to children with a hair disease.
You know what else I remember?
We had a very low-budget because we were paying for two places: our home and our life at the Ronald McDonald house but I remember the experiences we were given because of our horrid situation. We went to the zoo, the aquarium, the parks, the ocean. We had a private ride on a sailboat. We met famous actors and models. We had front row tickets in the Diamond Club to the Mariners games more than once! We met comedians and millionaires. We had the opportunity to have private tours in places that most people do not get to see.
I remember the day my sister received her first wig! Blonde hair attached to a ball cap. Not the most “natural” looking but boy was my little sister excited. I think that was the first genuinely huge smile I had seen on her face in weeks.
I remember my sister’s favorite wig. In fact, it was not a wig at all. It was a beaded headdress from the Middle East. I think she liked it because it was the only thing that resembled hair that didn’t irritate the extremely sensitive skin on her head.
I remember that once a week a beautiful family or group would host a fabulous dinner for us at the Ronald McDonald house. This was the one day my mom did not have to stress about cooking which was just another thing to add to her daily list.
I remember that the Ronald McDonald house hosted a free haircut day! It would have been a fun experience except my mom had a “trendy” hair dresser who may have enjoyed chopping my mom’s hair off too much.
— I won’t post a picture for fear my mom would not be too happy with me—
I also remember purchasing a burgundy wig for my mom because of her hair hack job.
I remember finally being told that the end of chemo was near. I wanted the time to go by quicker because I was worried something would happen to my sister in the time we had left.
Nothing ever did.
I remember attending a farewell party for my family because we were one of the lucky ones who had the blessing of leaving whole. I remember seeing the bitter-sweet looks on my mom’s friends faces. Sweet because they love to see children walk away healthy but bitter because that child was not their own.
The other families were celebrating something that was not quite as a blessing for them.
I remember the day we finally were able to go home! It was the happiest day of our lives because the worst of our nightmare was finally over.
I knew it was not officially over. I knew they would be flying my sister back to the hospital once each month. I knew it was still a long process. But it was the hope I was looking for. It was finally seeing the light at the end of the tunnel.
I was changed.
I knew that my thinking, my outlook of situations, and even my appearance would never be the same again. My heart had broken into a million tiny pieces but somehow God stitched every single piece back together in exactly the right spot with a gold thread.
I was whole again but I would never be the same.
Those breaks in my heart represent the ugly I had to see in the world. Those tears are my fears, my insecurities, my weakness but God knew that. He took those tears and stitched them with hope, promise, strength, and a new found love that I did not know existed.
When I look at people, I do not see what I used to see. I do not make fun of what I used to make fun of.
I do not find it the least bit funny to poke fun at someone’s appearance for I know that it may be affected by something greater than what is seen at first glance. I refuse to have an “opinion” on other people’s choices because I have seen the ugly and I know that people are going through more than they let on.
I treasure each day for I now know how easily life can be taken away.
There is no greater heartache than seeing pain in the face of a child close to you.
There is no greater heartache than cancer.