Childhood Cancer Stories: So You Want to Help

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“Awareness” has gotten a bit of a bad rap these days.  Childhood cancer advocates, mostly parents who have, like me, the unfortunate luck to have lost a child to cancer, say that it is not enough, that action is what is needed.  It’s hard to argue with the statement that we need more action.  We do.  Our kids and your kids — those not yet diagnosed with cancer, but who will be one day — deserve it and yes, need it.

Now here is where I will get all philosophical on you.  Before action can occur, there has to be awareness.  Folks don’t just instantly pop up one day and say, “WOW.  Kids with cancer, now that’s got to suck.  How can I tackle that problem?”  It just doesn’t happen that way.  When childhood cancer is not on your radar, well, it’s simply not on your radar.  It wasn’t on my radar on March 22, 2007, but on March 23, 2007, when a pediatric ER physician spoke the words, “There is a mass in your daughter’s head,” to me, well then, yeah, it was on my radar.

Donna’s Cancer Story, and this month’s Childhood Cancer Stories:  The September Series have touched many of you.  They have made you aware of pediatric cancer, and for some, made you want to do something to help the children and families impacted by it.  The questions, “What can I do?  How can I help?” are something I am hearing regularly these days.

If awareness is the acorn of potential, the mighty oak tree that results are the actions that are a direct result of so many of you coming to know these children and families coping with pediatric cancer.  Last week, Mary Tyler Mom was the number one most read blog on ChicagoNow.  Each of the first eight posts made the most read individual posts as well.  You did that.  Not me.  YOU.

Right here, right now, I am giving you readers a standing ovation.  Thank you for spreading the word and either sharing or “liking” these posts.  That is the first step in transforming awareness into action.  But some of you want to do more.  Here are a few options and suggestions to amp up your awareness into action.

1.  Read this awesome and amazing post by fellow Cancer Mom, Mindi, What YOU Can Do to Support Childhood Cancer.  She lays out, with thirty concrete suggestions, how to start making a difference.  The options are as varied as donating blood or platelets, to picking up extra cleaning supplies and dropping them off at a Ronald McDonald House in your community.  Mindi also helps folks from getting bogged down in the harsh reality of childhood cancer.  Instead, she directs that awareness into action.  Don’t miss it.

2.  Are you a runner?  Have you ever heard of the important work of Alex’s Lemonade Stand?  This amazing childhood cancer charity funds millions of dollars of research by encouraging folks to sell lemonade and donate their profits to the charity, funding more research.  So damn simple, so damn successful, so damn powerful.  They have started a new initiative and it is ambitious.  They are recruiting supporters nationwide to run or walk a collective one million miles this month in their inaugural The Million Mile Run.  Watch this video, then find out more at their Million Mile Run website.  

3.  The Northwestern Mutual Foundation has partnered with Alex’s Lemonade Stand on a Facebook campaign called, “Heroes for a Cure,”  focused on the sharing of a video telling the stories of Tony and Brooke, two kids dealing with cancer.  Every time the video is shared on Facebook, $2 is donated to Alex’s Lemonade Stand — up to $50K, which equals 1,000 hours of research time.  With only a click, you can be helping turn your awareness into action.  This is a beautiful video which doesn’t shy away from the realities of cancer and celebrates not only the kids, but the researchers who will, someday, find better treatments and cures for our children.  Grateful thanks to Northwestern Mutual for stepping up to help our kids.

4.  St. Baldrick’s, the number one private funder of pediatric cancer research,  is near and dear to my heart.  In the past eighteen months, thanks in large part to the idea of a reader, someone just like you, who wanted to do something after reading Donna’s Cancer Story, Donna’s Good Things has raised over $176,000 dollars for this great organization.  That figure just boggles my mind.  And that figure is as high as it is because of folks just like you and so many fellow bloggers who support these efforts.  But knowing that not all folks are up to shaving their head, they have started a new initiative called, “Do What You Want.”  Host a Girls Night Out, with proceeds going to fund research.  Donate your birthday and ask for donations instead of gifts.  Have a poker tournament or a bake sale or organize a 5K — whatever you want to help raise much needed dollars for kids with cancer.  St. Baldrick’s has all the tech infrastructure you need to manage the fundraising.  And, if you really want to win my heart, you can host a “Do What You Want” fundraiser with the proceeds going towards the Donna’s Good Things campaign.

5.  When an international car manufacturer comes a knockin’ on your email doorstep, you best be answering.  Hyundai has a charitable arm called Hyundai Hope on Wheels.  Did you know that Hyundai owners and dealers have donated over $72 million dollars to childhood cancer research since 1998?  Seventy.  Two.  Million.  That is a whole lot of HOPE.  Donna’s hospital, Lurie Children’s of Chicago will receive $100,000 just this year alone.  For a major manufacturer to be so invested in what kids with cancer need most — RESEARCH DOLLARS (not dolls, natch) — well, let’s just say this Cancer Mom is seriously looking to purchase a Hyundai for our next family car.  You can learn more about the initiatives funded at COG (Children’s Oncology Group) hospitals across the country.  But short of buying a Hyundai, how can you support these efforts?  Here is how:

  • Take a look at the “Get Involved” page for Hyundai Hope on Wheels — there are a few suggestions.
  • “Like” the Hyundai Facebook page for regular updates and share opportunities for childhood cancer throughout the month.
  • Visit the “Every Handprint Tells a Story” Facebook app for updates and share opportunities in your social media feeds throughout the month of September.
  • Register for any of the upcoming Hyundai Run 4 Hope 5K races across the country.  All funds raised will be donated to COG hospitals local to the race locations, including Miami, DC, Atlanta, Montgomery and Dallas.

So there you have it!  You wanted to know how to help, and here is your roadmap.  I use the term “roadmap” deliberately, as for so many of the kids with cancer, their doctors don’t have any roadmaps to guide their treatment.  Like Donna’s team, they try their best, hope for a great outcome, but their means are limited.

Researchers need more money.  There is no better way to say it.  They need more money.  With government funding at pathetic levels and shrinking, well, I am grateful to large corporations like Northwestern Mutual and Hyundai who are there to support this need, and reputable charities like St. Baldrick’s and Alex’s Lemonade Stand championing our kids.

Now get to it, folks.  Donate, click, like, share, plan, bake, run — whatever it is that will turn your awareness of childhood cancer into action.  And please know that you will have the unwavering gratitude of an army of cancer families, mine included.

Sam B’s Story: Befores and Afters

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Sandy Barrow

Many people divide their life into “before” or “after” events –“before I got married…,” or “after we moved…”  I am one of those people and my event divided my life like nothing that came before it.  It forever changed the course of my family’s life and continues to do so today. The date is forever etched in time—September 23, 2000.  On this day, my perfectly healthy appearing and acting 3 ½ year old son, Sam, was following his big brother’s lead of rolling backwards off our couch.

He fell and hit his head and started acting like he had a concussion.  We ended up in the emergency room having a CT scan of his head.  I then received the words from the ER doctor, “I have good news and bad news.  The good news is Sam does have a concussion, but there is no skull fracture, no internal bleeding.  The bad news is we believe we found a mass, a brain tumor, located in his cerebellum.”

My world instantly stopped spinning. I had to call my husband on the phone at 2 a.m. to tell him.  Middle of the night phone calls are NEVER good, and this one continued to prove this theory.  That doctor standing there, giving me that news, became the defining moment in my life, the distinct division of time.  Life, as I knew it before that moment, would never be the same.

Sam passed every neurological exam given to him and even his MRI didn’t make sense to the neurosurgeon.  There was no enhancement (typical of brain tumors,) and three of his ventricles were completely blocked and the fourth was barely functioning due to hydrocephalus.  But Sam was hopping around on one foot and playing catch with the doctor.

Four days later, I handed my healthy appearing son over to the neurosurgeon—before this, I thought I had done some pretty scary things.  Nothing compared to this.  He handed me back a very sick, scared little boy who we had to get to know all over again.  Some days, thirteen years later, I feel like we’re still doing that.  It was brain surgery, after all, the organ that contains the stuff that makes us, well, us.

After surgery, the doctor was able to tell us that he removed a golf-ball sized tumor, medulloblastoma, from Sam’s cerebellum. It was as close as it could be without being attached to his brainstem.  It also took more than two hours to drain the fluid that had accumulated in his brain.  We were told that the “window” for symptoms to begin appearing would have been very small and that more than likely, Sam would have lapsed into a coma and died.  The tumor was getting ready to herniate, or “explode” in Sam’s brain.

I was bearing witness to a miracle.

Sam and Mom
Sam and Mom

Sam had a pretty tough time after surgery.  He couldn’t walk, couldn’t talk, could only scream and vomit.  We had about a month of reprieve and healing at home before the grueling and horrendous radiation started.  Every day for six weeks, Sam received radiation to some part of his brain and spine.  He was so sick, and I’m still not sure how he survived that six weeks.

About four weeks after radiation ended, 48 weeks of chemotherapy began.  Sam was not your “smiling, bald kid” during any of this.  He literally kicked and screamed his way through treatment. My Mom says that’s what got him through that part of the journey. He literally fought for his life.  Little did I know at that time, that he would have to fight to live. He slowly began to heal.  Milestones that he had achieved were achieved once again and celebrated vigorously. In December 2001, he was done with active treatment.  A whole new level of scary….what to do now?

After is just a different path on the journey.  It does not mean cured!  Webster defines “cure” as “recovery or relief from a disease; a complete or permanent solution or remedy.”  What Sam, and our family, was left with was neither a relief nor a solution.

Sam’s last 13 years of life has consisted of about thirty MRIs, too many tests/blood draws to count, hearing loss, cataracts removed from both eyes, migraines, learning disabilities, a cavernous angioma, growth hormone deficiency (he’s 16 and 5’1” if he REALLY stretches—that’s it, he’s done growing), hypothyroidism, adrenal insufficiency, and we’re currently watching his male hormones starting to not function. Those are the things we deal with now.  He is at high risk for many other late effects, including other cancers.  They are the “gifts” from treatment.  It’s a fine line that we walk trying to be grateful that we got this far–I was once told that you have to have life to have side effects, but still.

Just as Sam fought through treatment, he has had to fight to live like a “normal” kid.  Soon after him telling his story at a brain tumor fundraiser he organized at school, the taunting, teasing, and bullying started.  We live in a community where differences are pretty much not accepted—they are cause for exclusion and being treated differently.  I realize that kids will seek out whatever they can that they deem “different” about someone—height, weight, hair color, etc.—but to know that Sam being a brain tumor survivor was their “something,” their reason for telling him he couldn’t eat lunch with them, their reason for not picking him to be on a team, their reason to shun and ignore him, their reason to call him “tumor ass,” well, there are no words to describe a mom’s heartbreak.

Not one classmate has stood up for him, not one. I often ask in my darkest moments, “He survived for THIS???”

Sam just keeps fighting. He’s never once asked not to go to school and has maintained High Honor Roll status the last six years.  Take that brain tumor and bullies!  These kids are the ones missing out.  They are missing out on knowing a pretty awesome kid who could teach them an awful lot. My hope is that at some point he finds that one true friend that will accept him for who he is. Maybe then he can stop fighting.

Max, Sam’s older brother, was 7 when Sam was diagnosed.  He dealt with the same worries and fears as his Dad and I.  He’s been there for Sam since the beginning.  He saved his life twice. Once, by showing him how to roll off the couch allowing the tumor to be found.  The second time was a few weeks after we brought Sam home from the hospital.

Sam would just sit on the couch, propped up in the corner, and just look at the world going by day after day.  One day, Max kept crawling by the couch, pushing Matchbox cars.  Imagine my surprise when I walked into the living room and didn’t see Sam on the couch!  He had gotten himself off the couch and was giving everything he had to follow along with Max.  The crawl wasn’t pretty, but he was moving.

From that point, Max has had his back, from helping him learn things, being so patient with him when he works himself into fits of frustration, to being the only student at school to stick up for him.  He had to grow up pretty quick and he’s wise beyond his 19 years.  Max knows what HOPE is and literally carries it around with him.  To honor Sam, he has a tattoo that represents childhood cancer, Sam, and HOPE.  Twelve years later, his worries and fears that he deals with are still the same as his Dad and mine—what does the future hold for Sam?

Brothers, Sam and Max
Brothers, Sam and Max

I know that as long as they have each other, things will be okay.

My family’s life before cancer doesn’t get visited very often.  Pictures don’t get looked at and home videos don’t get watched.  There are no winners in the “What If?” game.  I don’t want to go back.  We just have to keep looking forward, HOPING…..ALL ways, always.

If you’re looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

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.

Nicholas’ Story: Your Son Has Leukemia

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Joanna Morealle-Veghts

On July 4, 2011, we received the awful news no parent wants to hear, “Your son has leukemia.”  And not just leukemia, but mixed type leukemia, which is a combination of ALL and AML.  The next day we were meeting our new “team” at Comer Children’s Hospital and learning the new cancer language.  As we spent the next few months dealing with chemo, spinal taps, ports,  fevers,  and anesthesia (Nicholas would always try to bounce around on the table- even though he was out like a light!), our goal was to get rid of the cancer.

He Shoots, He Scores!

In August, 2011, school starts!  We made it to third grade and he had the sweetest teacher in the world.  She would do just about anything for him and us.  Nicholas still didn’t like going to school, but loved his friends and showing off his new bald head!

In November, 2011, I heard the doctor say the word ‘remission’ and I looked at my husband and thought “YES, we did it!  We are in the clear!”  We still have years to go, but no more cancer cells in that little body anymore, YAY!”   We had a quiet Thanksgiving after Nicholas had some words with the doctor to let us go home on Wednesday night.

A week later the fever came…..

What we thought was a normal neutropenia fever turned into so much more.  We headed down to the hospital for labs and prepared for the two day stay and hoped that all the blood work came back clean.  But our journey to the PICU was just beginning ….

I received a call from my husband on night two that Nicholas was coughing and having trouble breathing.  We weren’t sure what to do and we were having trouble getting a straight answer from the doctors because his labs weren’t showing anything unusual.

Nicholas was transferred down to the PICU that night so they could keep a more watchful eye on him and control his breathing.  During that night he was on many different breathing machines, all of which were very uncomfortable for him.  I rushed my daughter off to school the next morning and sped down to the hospital to check on Nicholas as fast as I could.

I walked off the elevator and onto the 4th floor PICU and was searching for my “Bud!”  I was stopped before I walked into his room and his nurse introduced herself and tried to explain what was going on but I was not prepared in any way for what I was about to see.

Nicholas was attached to a CPAP breathing machine and he seemed to be hallucinating while in and out of sleep.  And these machines were not helping at all, so we were given the news later that afternoon that he would have to be intubated or he might not make it.  All I could think of was, “They are going to put my baby in a coma, on purpose,” and the only thing I could do was stand by and watch.

Nicholas had a very rough first night with the intubation tube.  The docs were in and out of that room all night while I sat and watched and cried from the couch.  I heard from one of the doctors a couple weeks later that she was very surprised he made it through that first night.  This kid was a fighter and we would not give up!

12 Days Before Death

The next couple weeks were a blur.  Nicholas was intubated, but they were trying to decrease some meds to get him to come out of the coma.  Finally, as I was talking to him, I got the hand squeeze that I had been waiting for.  The joy that we felt was short lived.

The next morning, when he should have been moving and waking up more, he was doing even less.  They took him down for an MRI which ended up showing bleeding on the brain.  In order to reduce the bleeding they had to do a surgery which requires your blood counts to be up, but as a cancer patient, his blood counts were down.  The team had to do many infusions very quickly in order to get him to surgery before more damage could be done.

After the surgery, we were thrilled Nicholas made it through, but the scans showed a lot of fluid in the lungs due to the mass quantity of blood they had given to him in a short amount of time.  Now a chest tube had to be put in to release all the fluids that had built up.  We were also dealing with an aspergillous infection and a massive amount of antibiotics.

By now we are in our first month in the PICU.  Our favorite nurses and staff were taking care of Nicholas and sometimes us! They were reducing the sedation drugs and getting ready to work on weaning him off the ventilator, but with every step forward we seemed to take 3 steps back.

The team had tried to wean Nicholas off the vent too fast, which did more damage to his lungs. He was put on a different ventilator, which dod not allow him to be moved, along with more of the sedation.  Back to square one.

The next few weeks were difficult ones, as we had many setbacks.  Finally, in February 2012, we were so happy to see Nicholas open his eyes and spend some time with us.  He was able to be moved and we had the physical therapist coming in and working with him to get those joints moving again!  We knew we were going to have a rough road ahead getting him better and we were exhausted, but ready!

Nicholas was getting feisty again (pinching his nurse as she was trying to give him a bath!), and watching his favorite movie, Cars, over and over, but his stats were not getting any better, and his lungs were not doing their job.  He was not able to get on the lung transplant list due to his leukemia.  We did the best we could to keep him as comfortable as possible and celebrated his ninth  birthday early with our family and friends.  Nicholas even let his sister give him a big hug, although she squeezed him a bit too hard and he mouthed OWWW, but then gave her a smile.

We spent Nicholas’ last few nights talking to him when he couldn’t sleep.  We learned all his favorite things before we had to say goodbye.

On February 28, 2012 Nicholas Robert earned his wings.   I am sure he is always watching over us.

Last Family Photo, Edit

Team Nicholas was formed to honor his memory and keep his giving spirit alive.  We help other families with critically ill children in our community and make monthly donations to the Comer Children’s Hospital Child Life Department.

Please join us on 9/22/13 for the Team Nicholas “I’m Possible” 5k in Joliet.

If you’ve missed any posts in Childhood Cancer Stories:  The September Series, you can find all of them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

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.