Author: Sheila Quirke

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Connor’s Story: Moments

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.

Connor arriving at St. Jude's in Memphis.
Connor arriving at St. Jude’s in Memphis.

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.

Superheroes!
Superheroes!

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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Matthew’s (Mom’s) Story: The Nurses Were There

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.

Mother and son, Wendy and Matthew
Mother and son, Wendy and Matthew

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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If you don’t want to miss a single entry in the September Series, consider subscribing to my blog.  Here is how: Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.
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Abby’s Story: Trying to Make Things Normal

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 Patty Furco 

I quite literally just pooped my pants. I am trying to make it feel like a “normal” morning at our house, but who am I kidding, the above statement shows that inside, it is so not.
My daughter Abby is in the PICU hooked up to massive amounts of IV pain medicine, enough that would make you or I stop breathing almost instantly.  She is preparing for air transport from our local hospital to her new post-transplant care hospital.
ABBY1
My husband is taking his 24 hour shift with Abby at the hospital, while I’m at home with our two other daughters. I’m trying to make things normal for them, making breakfast, planning a fun quick trip to the nearby beach for a touch of fun before I leave them to go on the air transport with their sister. I then take the little one to her planned camp afternoon, my eldest and I go to lunch and shop. I’m loving on them as much as I can, and even when a store clerk asks “How are you doing today?” I actually answered “Doing good thank you.”
It struck me when I heard myself say that…actually things really aren’t good, but I’m trying to be strong & “normal” here for my 11 year old that I’m soon leaving to go in a plane with my other daughter on multiple IV pain medications due to complications caused by her bone marrow transplant in January. HA. That shop clerk really wouldn’t want to hear that. So “doing fine” or “good” suffices.
Our family has been doing this for 4 1/2 years, with a small break between end of treatment & relapse. Our four year old knows nothing different. Our oldest is learning more and more each day. And most importantly, our daughter Abby, the patient, is SO ready for this all to be done with.
We are all just on autopilot. Get things done. People always ask “How do you do it?” We just do. There is no other option. My husband and I, together, we just get it done. We balance Abby’s needs & care, are her best advocates, and try hard to balance the other girls as well.
We are blessed to be surrounded by an amazingly supportive family, both blood related and those we call family that are not blood. Our community, wherever we may be (currently we are at our fourth hospital), surrounds us with love, care & support in so many ways.
We could not be luckier in that way.
So yes, on Tuesday I may have literally pooped in my pants thinking about what was yet to come that day, but I pulled myself together, had a nice morning oceanside with donuts for the other girls, went back to school shopping with the oldest while the youngest was doing her thing at camp, then drove to the hospital to get into the jet to transport Abby and I to her transplant docs for specialized care. All in days work.
I share this tiny glimpse of our story today because the need for Childhood Cancer Awareness is needed. Childhood Cancer is real and affects many families. Seven kids are diagnosed each day.
Our kids need research for cures. The lack of federal funding is astounding (4% of the federal budget for all cancer research), and applications of adult research to children isn’t as effective as direct children’s research is.
My daughter is alive today because of protocols created through childhood cancer research, both her initial battle of PH+ ALL (leukemia) and a relapse of the same, resulting in a bone marrow transplant in January.
For that we cannot be more thankful, but we need more research for those childhood cancers that do not have protocols that have success rates, for the children suffering like Abby, from severe long term side effect due to their treatments, for all kids and families batting his devastating disease, and for those not yet even diagnosed.
Our Abby is here with us, and for that, I cannot be more happy. But each and every day right now, she is fighting for a better quality of life. We will stand side by side with her until the fight is won.
Let’s fight the fight today to help improve the lives of those battling now and in the future. Fewer families should have to endure this. It’s like the roller coaster that doesn’t end and you can’t get off.
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Patty Furco is Mom to three daughters and a volunteer for the St. Baldrick’s Foundation.  You can donate to St. Baldrick’s HERE.
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If you don’t want to miss a single entry in the September Series, consider subscribing to my blog.  Here is how: Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.