Category: Pediatric Cancer

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Levi’s Story: Finding the Kindness in Cancer

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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.   

By Melina Brown

In August 2004, life was looking up for me and my children. I was nearing the end of a long divorce process, I had just saved up enough money to move into a new place and my kids were healthy, beautiful and thriving.

My middle child, Levi, age 4, began having some headaches that summer. Nothing too bad, just enough to worry his Momma. I took him to his pediatrician, who diagnosed him with a sinus infection and prescribed some amoxicillin. When the headaches continued, I took him back and he received a stronger antibiotic.

I point blank asked his doctor “Could he have a brain tumor?” (partially because my grandmother had passed away from a brain tumor just hours after she was found unresponsive in her apartment and partially because I am a grade A worrywart). I was assured that of course it was not a brain tumor – he would have many more symptoms than a few headaches!

Fast forward two weeks – my sweet Levi lay in a bed in PICU, diagnosed with medulloblastoma, a highly malignant brain tumor that had already spread to his spine. A follow up visit to another pediatrician ended up being a 4 week hospital stay – two weeks in PICU and two weeks on the pediatric floor. The surgery to remove his tumor left him mute and paralyzed. All he could do was scream and scream and scream. I cannot even begin to imagine how scared my baby was. A long year of treatment was planned – six weeks of radiation to his brain and spine, followed by harsh chemotherapy.

Of course, my first thought was of Levi and his fight. But soon after, other worries began creeping in. Who would take care of my other children? How would I pay my bills? My house was half packed – how would we get moved and unpacked before Levi’s treatments would begin? My car was a 10 year old wreck that needed new tires, would it last the 50 mile daily trip to Levi’s radiation treatments?

Levi in Treatment at 4

When I look back, what stands out the most is the kindness of people. We hear all the time how the world is going to hell in a hand basket, but I have found that people are truly good, for the most part:

  • My babysitter kept my two year old daughter Kayleigh for two weeks for no pay while Levi was hospitalized. My parents kept her the next two weeks.
  • My son Ethan, who was 10, moved in with his friend’s parents for the entire month of September. They took care of him like he was their own child (and still do!).
  • My high school friend, who saw me at the gas station, crying hysterically, the night Levi was diagnosed (I had ran home for some clothes). She rounded up two other best friends from high school and they stayed with me the entire day while Levi was in surgery.
  • My friend who came to my new home and unpacked boxes for me.
  • The sweet lady who was going through radiation at the same time as Levi, who brought him a different toy every single day.
  • The senior citizen at Hardee’s who came over to talk to us one morning after Levi finished his radiation treatment. He asked if Levi was sunburned and when I explained that it was damage from radiation to treat his brain cancer, he cried and prayed for Levi right there at our table.
  • The stranger who walked up to us one day in McDonald’s and gave me $20 to pay for our meal.
  • Our pharmacist/friend , who paid to have my car fixed and showed up every few weeks with diapers, toiletries, and other goodies from Sam’s Club – all while she was fighting cancer herself.
  • My ex-husband’s former boss, who brought us a dump truck load of gravel to extend our driveway, so I didn’t have to carry Levi through the mud and snow that winter.
  • The newspaper reporter who wrote an article about Levi while he was still in PICU. This story resulted in enough donations to allow me to stay home with Levi throughout his entire year of treatment.
  • The DMV clerk who insisted on paying for our handicap decal.

Levi is now 13 years old. He loves PlayStation and pizza. He attends a school for children with learning disabilities and was held back two years. He has relearned everything he lost, with the exception of jumping on one foot, but he’s working on that. For the past three years, he has won the “Most Kind to Others” award at the end of the school year. I would say he learned that the best way possible – by example.

Levi Celebrating

Melina, Levi’s Mom, is one of the original St. Baldrick’s “46 Shave for the Brave” Moms — all women whose children were diagnosed with cancer. In September 2010 Melina appeared on the nationally televised Stand Up 2 Cancer event with her newly shorn head. She organizes an annual St. Baldrick’s event with the support of the Virgina Tech Hokies. You can find her fundraising page here.  

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Childhood Cancer Stories: The September Series

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Two years ago I set about the task of writing Donna’s Cancer Story, a blog series devoted to my daughter’s cancer treatment.  After being diagnosed with papillary meningioma, an aggressive brain tumor, Donna had 31 months of treatment before she died on October 19, 2009.

I need you. YOU.
I need you. YOU.

When I thought about how I could use my blog platform to raise awareness about childhood cancer in September (Childhood Cancer Awareness Month), the communion of 30 days in September and 31 months of treatment clicked.  Light bulb.  Each day in September 2011 I wrote about one month of Donna’s treatment.

It was a lot harder than I imagined it would be.  In some ways, I am still reeling from the experience, as Donna’s story has defined me as a blogger and social media presence.  Towards the end of the month, I started posting not first thing in the morning, but at 4 or 5 in the afternoon, and simply felt numb, as the reading and the writing and the reliving had become overwhelming.  I wrote about the experience here.

My strategy about raising awareness for childhood cancer has not changed. I firmly believe that people respond and relate better to stories than statistics. When you know a child with cancer, everything changes.  The realities of how poorly funded research is are a punch in the gut to any Cancer Parent (and governmental funding for childhood cancer research was lowered this year, thanks to Congress and sequestration measures).  Other stats of significance focus on how archaic treatment modalities are, or how alarmingly high death rates are for certain cancers.

There is a false belief that with a 94% cure rate for the most common childhood cancer, leukemia (ALL specifically), this whole childhood cancer thing is a done deal.  Tell that to the 6% of families who will lose their child to ALL.  Or the 50% of families who will lose their child to a brain tumor.  Or the 100% of families who will lose their child to DIPG, a particularly insidious form of brain cancer that targets children.

More children will die from cancer than any other childhood disease. That is fact.  Despite that, the American Cancer Society will maintain that the numbers are not statistically relevant, as does the National Cancer Institute:

In the United States in 2007, approximately 10,400 children under age 15 were diagnosed with cancer and about 1,545 children will die from the disease (1). Although this makes cancer the leading cause of death by disease among U.S. children 1 to 14 years of age, cancer is still relatively rare in this age group. On average, 1 to 2 children develop the disease each year for every 10,000 children in the United States (2). 

So 1-2 kids out of 10K are expendable, not worthy of the care, concern, or dollars of governmental cancer research entities.  And that, my friends, is why I tell Donna’s story and why so many other Cancer Parents I know tell the stories of their children, both living and deceased.  If we don’t tell then, who will?

Our children are not statistically insignificant.

Our children are just like yours, except they were unlucky enough to be diagnosed with a disease that does not rate high enough to merit research dollars or the attention of pharmaceutical companies looking to profit from the R and D of new treatment modalities.  That is the stone cold truth, harsh as it is.  And so, I tell Donna’s story, and in September, am humbled to host a month of other children’s stories told by their parents.

September Cover

Please join me every day in September as I share Piper and Silas and Abby and Mia and Ryan and Cal and so many other children, 22 to be exact. Reading the posts, as they came into my in box, I was blown away. These are beautiful children, beautiful families.  I know it is cliche, but I really did laugh and cry.  I think you will, too.  And like Donna did in 2011, these kids will teach you so much about life, and sometimes, about death.

And this is the part where I ask for a favor, or two to be exact.  One is that you subscribe to my blog.  By doing that, you won’t miss a single post, a single story, a single tear, or a single opportunity to be changed.  You can subscribe here, and I promise no spam, just great and important content — stories, cause we all know they are more important than stats.  It’s easy.  Just enter your email address in the top box, then click the “Create Subscription” box below it.  1-2-3.

Secondly, I will offer a hug and kiss (virtual only, yo) to each and every one of you that pledges to share these stories.  The reason Donna’s Cancer Story had such a profound impact is because of the generosity of the share and the “LIKE.”  You did that, not me.  By sharing the stories of these children and their families, with a literal click of a button, you are helping to raise awareness.  There is a well known formula in cancer circles:

Awareness + funding = cure.

We gots to be aware before the funding will come, and there is no cure without funding.

Thanks for your time today, this Friday of Labor Day weekend.  I know you have barbecues and road trips or just a lot of Real Housewives of It Doesn’t Even Matter on your mind, so I really appreciate your time.  Join me starting Sunday and you will be introduced to some kids that will change your life.  I promise.

xox, Mary Tyler Mom

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If a Birthday Happens and No One Is There to Blow Out the Candles, Do You Still Celebrate?

So this is the question I ask myself every July.  And I’m not the only grieving parent that struggles with this question.  Many of us do.  July 20 is a hard day for me and my family.  I know this because as it gets closer I am prone to tears that come and go like an unexpected summer storm.

Grief sucks and it sucks the most for me on July 20 and October 19 — my daughter’s birthday and death anniversary, respectively.  An analogy I use often is that the volume is turned up on life during those days leading up to and following.  I am more raw, more emotional, more sensitive, more aware, more open, more closed, more everything.

The first year, MAN, it packed a punch.  I didn’t realize how hard it would be. Since then, I have learned to make room for it.  Feel the feelings, just like Donna did.  She was a master of feeling her feelings without letting those feelings overtake her.  I have learned much from her.  As a family, we’ve also learned that it helps to pull close during Donna’s birthday.  Don’t commit to anything, as we won’t want to be there.  Maybe that will change, but for now it is what it is.

That first birthday without Donna was the acorn revelation birthday.  In a nutshell, pun absolutely intended, two of Donna’s closest playmates offered us envelopes of acorns on her birthday.  What are the chances of that happening?  And what did the acorns mean?  Well, Mr. Google gave me all the information I needed to know, know, that those acorns might have been collected by her playmates, but Donna sent them.

Acorns are the symbol of strength, power, potential, protection, immortality, and difficult labors being rewarded.  I was completely certain, in the moments after opening those two envelopes of acorns, that Donna was reaching out to us on such a difficult day.  She was reminding us of her presence, her continued presence in our lives.  “Mighty oaks from little acorns grow,” is a hard to attribute, but ancient quote that has become very important and comforting to me in the years since.

DGT_BlueRed

So much of the work our charity, Donna’s Good Things, does is to help other little kids in need.  I see it as a mission to help fulfill Donna’s potential that she will never fulfill herself.  Donna was our acorn and it is our honor and reward and task to nurture that acorn into a mighty oak.  That is why so much of what we do is help other charities, like St. Baldrick’s (just shy of $170K! raised in Donna’s name) and Lurie Children’s Hospital of Chicago at their annual Run for Gus, raising funds for the pediatric brain tumor program.

Helping others helps us.

Tomorrow, Donna’s would be/should be 8th birthday, we will be together as a family.  We try to do things that Donna enjoyed.  The zoo, a bookstore or library, Noodles & Co. for macaroni-and-cheese.  Ha!  As wise and amazing as Donna was, she was still four when she died.  Her joys and pleasures were simple ones.

Another thing that has helped us has been to ask our online friends and family members to post photos of themselves wearing black, Donna’s favorite color.  It is hard to understand or describe why seeing dozens and dozens and dozens of photos of folks we know and folks we don’t know honoring and remembering our girl is so helpful.  Such a simple gesture, really, but damn does it give us what we need on such a difficult day.  You can post them here.

It reminds us that yes, Donna was here, she made an impact, she continues to make an impact, she lived before she died, she loved noodles and cheddarwurst and the color black and dancing and reading and her baby brother.  Donna lived.

Finally, if you are so inclined, we invite you to support our Team Dancing Donna in next week’s Run for Gus, a 5K run or 1 mile walk where all donations go to Donna’s hospital to support the care and research of pediatric brain tumor patients.  We wear tutus as we run or walk along Chicago’s beautiful lakefront.  Please consider an $8 donation in honor of Donna’s 8th birthday.  Or, better yet, consider joining our team.  We have lots and lots of tutus to pass around!  You can donate your $8 tribute donation here.  

So back to the question in the title of this post, “If a birthday happens and no one is there to blow out the candles, do you still celebrate?”  Well, I am still working on that one.  I know there will be cake, a little one just for the three of us.  And if we won’t be celebrating, per se, we will certainly be remembering, honoring, and marveling at the beautiful Donna, and how lucky we were and are to have her in our family.

And if you don’t know Donna, well, you should!  Here is Donna in a nutshell:

Hug your kids, folks, and treat them extra special today, and give them a kiss from Donna just because.  She would like that.  Thank you.