Category: Childhood Cancer Stories 2015

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Jack Donovan 

Dear Gabe:

I’m really missing you because it’s the start of the school year, and you should be here with me.  I’m in 7^th grade this year.  You would be in 4^th grade at St. Peter with me.  Our little sister Grace is at our school now, too.  She is in kindergarten, and our classes are “Buddies.”   That means my class and her class all go to church together every Friday, and the big kids help the little kids.

I think about you when I’m at mass, and I always pray to you during intentions.  (That’s when we pray for someone or something special.)  I pray that you enjoy Heaven and that you don’t get too lonely without any of your family.  We all wish you were here with us.

I see my friends with their brothers, and it makes me thinks about you a lot.  My best friends are Gabe (the same name as you), Anthony, Blaise, and Joshua.  They all have brothers.  Sometimes, after school, when I see them go home with their brothers, I get teary.  I miss you, and I feel lonely knowing you should be here with me.  During the day we would do homework and play together after school.  At night, we would sleep together in a bunk bed.  I hope you would have top bunk!  I would also like to build Legos together and collect comic books together.

Things I remember about you are that you would only eat things I ate.  You didn’t like to smile.  You were very serious.  When you did smile, it was a very cute face.

I also remember that sometimes Mom and Dad had to leave me when you were in the hospital getting surgery or chemo.  I remember that you had a tube going into your chest.  I remember you always had an IV in the hospital, and everywhere you went, the IV pole had to go with you. You normally shared a room with another patient.  Sometimes we would put a curtain around us.  Sometimes we would play with them.

I was too little to understand anything like I do now.  Now, I know that you needed a bone marrow transplant, and that that is very serious.  You died without it, but you also could have died from it.  I wish I could have given you my bone marrow, but we were not compatible.  Now I know what a scary time it was when you were sick and what a sad time it was when you died.

I like to remember you by always talking about you.  I like to go to the cemetery and pray for you and visit you.  I feel very peaceful there.  I always leave a toy for you by your grave.  There are things there that I left when I was only five-years-old, like trucks from Happy Meals and a Hot Wheels car.

Now, I’m 12-years-old, and they’re still there.  Sometimes I carve a stick for you with my pocket knife and leave it there.  I think about you when I go camping with Boy Scouts.  I think you would be a Cub Scout, and you would sometimes go on the really cool Boy Scouts campouts with me, like when we went to the Warren Dunes or when we went caving in the Maquoketa Caves.  You would probably enjoy lake swimming, just like me.

I wish you didn’t get leukemia and pass away, but I try to make you a positive in my own life.  You can’t always be negative when something bad happens.  I need to be positive for those who need me, like other families who have lost someone and are having trouble coping with it. Once, when a family lost their daughter, I went to see them and to try and help them.

Sometimes I wonder what you would want to grow up to be.  I’m going to honor you when I’m young and when I’m old.  You have really shaped me into the person I am today.  I saw you suffer, so I know I can be strong.  I try to honor you and remember you by being nice to everyone and by helping people in your name.  Someday, I would like to build you a memorial.

I love you, Gabe.

Your Brother,

Jack

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Gabe’s mother, Randee, originally shared his story in 2013.  You can read about Gabe HERE.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Laurie Johnson 

Your entire life is made up of moments.  Not many moments were that significant before our son was diagnosed with cancer in November 2011, but now every moment counts.

Connor had a week of headaches before I took him to the eye doctor.  He had just turned four and there is a history of migraines and bad eye sight on both sides of the family, so I thought it was just a routine check up.

Moment one was when our pediatrician called us as we were driving home that night (after hours) to tell us that Connor would have an MRI the next morning due to pressure seen on his optic nerves.  We were nervous but the words “brain tumor” didn’t cross my mind.  Cancer is not common on either side of our families so it didn’t immediately occur to us.

The next morning Connor and I ran into a neighbor at the store.  I told her about the MRI and I remember that he was jumping and being silly and I said, “Look at him.  I’m sure everything is fine.”  My husband met us at the hospital for the MRI.  At that point I think I was most worried about the sedation, but Connor went to sleep easily and my husband and I went to the cafeteria where I ran into the doctor that delivered Connor.  I said why we were there and again said, “I’m sure everything is fine.”  Call it ignorance, call it denial, call it what you want but I was not that concerned.

Moment two is when my husband and I were taken down a hall by a nurse.  I didn’t know the hospital well and assumed we were being brought back to our son.  But then we turned the corner to a windowless, empty room where our pediatrician was waiting.  I instantly crumbled. I knew it was bad.  She told us that a large mass had been found in his brain.  The size of a baseball.

The next few days are a blur of many moments: the ambulance ride to Children’s Memorial where Connor was thrilled to “get to” ride in an ambulance with the lights and sirens on; the doctor showing us the image of this horrible mass taking over our son’s brain; then telling us that he may not survive surgery or may wake up not being able to walk or talk; then postponing the surgery to give the surgeon time to figure out how to tackle the monster without killing our son.  In all of those moments we were surrounded by amazing friends and family but I just remember lots of tears and feeling numb.

Moment three is when Connor woke up from surgery and was able to count to ten and move without any problem.  He smiled and we cried.  What a miracle.  But that joy was short lived when we were told it was a very rare cancer called AT/RT (Atypical Teratoid/Rhabdoid Tumor) that had spread all throughout his brain and spine and they could only give him a 20-30% chance of being alive in two years.  I remember when I asked for the odds, I was thinking that only a 75% chance would be terrible to hear.  Nothing could prepare us for the 20%-30%.  And that was only for two years.  They didn’t have statistics on a five year survival rate.

We were discharged that day.  Connor was recovering amazingly fast.  Within days we had to stop him from running around the house with his little brother.  How could my little boy have cancer???

Treatment options varied but all consisted of 6 weeks of full brain and spine radiation (with sedation each day) and lots of chemo.  Poison.  We were told that radiating a four year old brain would lead to a 30-40 point drop in IQ.  Not to mention the damage that the high dose chemo would do to his mind and body.  We mourned the loss of our son that was going to have straight A’s and play varsity sports and get full scholarships to any college of his choice.

Ok, maybe that was a little optimistic, but to hear that the only way to save your child’s life is to cause permanent damage and that graduating high school would be difficult was devastating.  But at least he had the chance to fight.

Ultimately we chose to go to St. Jude for treatment.  It truly is an amazing place and Connor was thrilled to go there every day to play and be spoiled, but I also remember a whirlwind of too many kids being sick.  Too many exhausted parents fighting for their kids’ lives.  Too many scars and needles and medicine and appointments.

We did our best to be positive for him but in reality, Connor carried us those days.  His smile, spirit and perseverance got us through.  Then after his last round of chemo, we had the most glorious moment of hearing the words “No Evidence of Disease.”  It took all of treatment to get rid of the cancer, but it was gone.  I was so in shock that I almost didn’t believe it.  It had been eight months of fighting to finally have clear scans.

Connor is now three years cancer free!  Right before each scan, there is that fearful moment of “what if it comes back,” but that subsides with each scan. And now we have a different perspective.

This doesn’t mean that we are perfect now and never get frustrated at the little things (because we do), but hope, thankfulness and perspective are our focus now.  It helps us not dwell on the after-treatment side effects because Connor did not escape unscathed.  Radiation and chemo did their damage.  He has a shunt, he has permanent hair loss, he takes multiple pills a day, he receives daily growth hormone shots, he has hearing loss, he is behind in school and he just had cataracts removed.  But he is here.

Conor is happy and has the most genuine spirit and smile that can lift up anyone. We are so thankful for the extra moments we have been given.  Like his first day of kindergarten, first grade and second grade, his first baseball game, meeting his baby sister, winning the Pinewood Derby race, playing with his brother and sister (and fighting with them as well).   Not everyone gets so many moments, whether due to cancer or an accident.  We know we are the lucky ones and we are so thankful for the love and hope we are filled with each moment of every day.

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September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Wendy Burr

In what job can you serve people daily in as profound a way as nurses do? I have been the recipient of unforgettable acts of kindness put forth by nurses, and now my career aspirations are primarily fueled by the desire to pay it forward to families facing hardships of their own.

In 2011, my three-year-old son (read Matthew’s Story HERE) was in the hospital for three horrible days of testing prior to his cancer diagnosis. On the third day, the doctors finally decided to take a biopsy of his bone marrow, which required a procedure to be done under general anesthesia. My little Matthew was terrified.

Feeling apprehensive ourselves, my husband and I took him into a huge, sterile room and laid his head on a donut-shaped pillow. As the anesthesia began, Matthew flipped out and our panic set in. The anesthesiologist quickly put Matthew under to regain control of the situation, and as Matthew’s small body went limp, we were ushered out of the room.

Waiting in a quiet room, my husband and I held onto each other sobbing in fear. Our son was about to be diagnosed with cancer, and we both knew it. Our only preconceived notion was that cancer kills. These were the darkest moments of our lives.

During those horrible moments and in the days to come, the nurses were there, comforting us. They cried with us. They taught us how to advocate for our son. When we no longer felt qualified to care for him, they instructed us with patience and understanding. Hours upon hours were spent teaching us just what we needed to do so that we would feel comfortable enough to take our son home again. Their charity, empathy, and caring nature are hard to describe and are unrivaled by any other memory I have.

At the end of the week, while we were preparing to go home, I asked our nurse how he does his job without giving up too much of himself. His answer is etched in my mind forever. He told me he gets more out of his job than he gives.

This man, who cries with parents who are grieving because their worst nightmare came true; who pretends that mountain dew is urine in a specimen cup, just to make sick kids laugh; who smells the “stinky feet” of every angry child he cares for, and then falls on the floor, just for a tiny smile: this is who I want to emulate.

If he can do such soul-rending work and still have something left for his loved ones, then maybe I can too.

As a nurse, I will have the ability to help people every single day, and sometimes that help will come during the darkest moments of their lives. After what I’ve seen, how could I possibly choose to do anything different with the rest of my life? I want to be a nurse to pay it forward. After all, I suspect someone did the same thing for me once.

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Wendy Burr is a nurse and mother and author who lives in Utah.

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