A Hero Named Holden

Another guest blogger, Enjoy

The word “cancer” sends chills of fear down the spines of just about anyone – but it might be most terrifying for a parent who hears the diagnosis for his or her child.

That was the case for the Harless family. An MRI at the Riley Hospital for Children at IU Health revealed their worst fears: the source of the back pain that their two-year-old son, Holden, had been complaining of was a spine tumor, not constipation as one doctor wrongfully diagnosed it.

But today, Holden runs around the family farm with the energetic abandon of a healthy eight-year-old.  He’s a heroic survivor and an example of the many triumphs being celebrated at the Riley Hospital for Children Cancer Center, the only such facility in Indiana and a recognized national leader in clinical care and research in cancers that affect children.

According to the National Cancer Institute (NCI), fewer than two American children out of every 10,000 under age 15 develop cancer. While relatively rare for children, cancer is still the second leading cause of death for Americans 1 to 14 years of age, after accidents. The American Cancer Society reports that in 2007, about 10,400 American children under age 15 were diagnosed with cancer and that about 1,545 children die from the disease each year.

Cancers of the central nervous system (CNS)—the brain, brain stem and spinal cord—are the second most frequent malignancy affecting children, and are more common in those under 7, like Holden. And the prognosis for children diagnosed with CNS cancer is less favorable than for other forms of childhood cancer, such as acute lymphoblastic leukemia.

Understandably, “terrifying” is the word Holden’s mother uses to describe the moment she heard his diagnosis. Even more frightening was the choice she faced: allow Holden to undergo surgery, or expect that in six months, without surgery, her son could be paralyzed and never walk again.

That the Harless family encountered such a grim prospect is unbelievable. That is, it’s unbelievable when you see Holden today, brimming with energy and the picture of health. That’s because the Harless family chose surgery, after discussing the options at Riley with pediatric neurosurgeon Jodi Smith, M.D.


Survival rates of children with cancer are on the upswing, according to a study by the Centers for Disease Control and Prevention. Childhood leukemia death rates fell by 3% a year, from 1990 to 2004, the study found, compared to 1% a year for childhood brain and other nervous system cancers. The CDC says improved treatment of childhood cancers is the likely reason for this.

All Mrs. Harless knows, and is thankful for, is that after Holden's surgery, “Dr. Jodi said Holden had done great and that it went better than she could have hoped for. All the doctors were great there. The physical therapists, the neurosurgeons, everyone was phenomenal. I can't thank Riley enough for what they did for Holden. They gave us our family and basically his life."

About the Author:  Jon Dawson is an attorney and professional writer in Indianapolis. He has first-hand experience with pediatric cancer as he lost his sister to the disease. Jon writes on behalf of IUHealth and also contributes to several blogs including www.DoseOfMyOwn.com.

Dormez-Vous?

Frère Jacques, frère Jacques,
Dormez-vous? Dormez-vous?
Sonnez les matines! Sonnez les matines!
Din, dan, don. Din, dan, don.

A song that I learned when I was a kid.  I had this stuffed toy, a white french poodle with a music box inside that played that song "Are you sleeping?, Are you sleeping?, brother John, brother John, Morning bells are ringing, Morning bells are Ringing, din dan don, din, dan, don"

5 years of high school french and this is what I remember.

Ironic.

But relevant.  I asked my Doc at my last checkup what could be making me tired.  She did the full round of tests thryoid, vitamin D etc.  Everything checked out.  Another mystery.

So then I began thinking ok, is this just residual side effects from chemo, radiation or who the hell knows what?

I do have chemobrain.  I know this for a fact.  Nothing better than looking like an idiot at the grocery store when the clerk asks you paper or plastic and you are looking right at the bags and the answer escapes you.

Ok side effect, sure, could be, but what could make me so damn tired?

Maybe I push myself too hard?

Work too much?

Go to bed too late?


All of the above?


None of the above?


Effexor

The meds I take to manage my "major depressive disorder" fancy word for depression make me tired.

I have to take effexor with food or else it will make me dizzy.

So I take it when I eat either at breakfast or at lunch.

About an hour and a half after that I start to get tired.

Now its a good thing I work at a radio station and not guarding the missiles in this country, or else we may be in trouble.

I can't stop taking Effexor because I would rather be tired than depressed.

But being tired and fatigued reminds me of when I was going through chemo, and it scares me a little

All those what ifs.

What if its not the meds?

What if the cancer comes back?

What if?

You can't live your life in what ifs.

And unfortunately you can't live your life nap to nap. 

I have tried.

People don't understand side effects, people who don't have to deal with them anyway. 

The meds also give me insomnia.

So I nap when I am tired then I try to sleep and sometimes I can't.

I know it sounds like bitching or whining, but its not.

Just explaining.

If you don't deal with side effects or what are called invisible illnesses, a great website started by my friend Christine Miserandino called   But you don't look sick

So if you see me up late online wondering "Man, does she ever sleep?"

Now you know the answer.

Check out my podcast The Cancer Warrior on Empoweradio.com Available on demand and also available on Itunes. 

PBS Series A Wider World Segment "Cancer Etiquette"

The Right Diet May Prevent Cancer

 Another guest blogger.  Enjoy

The bad news is that there are many types of cancer and that they can kill you. The good news is that at least two types of cancers may be preventable if a person eats a diet rich in fruits and vegetables.  The foods to target are black raspberries and raw vegetables such as broccoli sprouts.  These foods contain antioxidants, as reported in this article at Webctor.com.
Studies presented at Six Annual International Frontiers on Cancer Prevention shows promise that the right diet can help prevent cancer.  More studies still need to be done.  Doctors stress that people still need to exercise and stop smoking in order to best help fruits and vegetables help prevent cancer.

Barrett’s Esophagus Pre-Cancer

Black raspberries helped patients with the pre-cancerous condition known as Barrett’s esophagus or BE.  People with BE rapidly degenerate into developing esophageal adenocarcinoma, which kills 14,000 Americans per year.  The main cause of BE is thought to be gastroesophagal reflux disease or GERD.  The constant presence of stomach acid in the esophagus causes severe damage.  People at risk for GERD include smokers and obese people.

Ohio State University studied the affects of eating black raspberries on patients with BE.  Patients ate black raspberries every day for 26 weeks.  The patients experienced less progression of BE through tissue damage.  Samples indicated less pre-cancerous cells in the patient’s digestive system.  Study leaders are hoping to try a similar black raspberry regimen for patients with oral cancer, as this has shown promise with lab animals with cancer.

Bladder Cancer

Raw cruciferous vegetables like cauliflower, cabbage, radishes and broccoli contain isothiocyanates or ITCs – chemicals that can help prevent cancer.  Currently, it is unknown just how much raw vegetables a person would need to eat in order to get the most bladder cancer prevention benefits.  ITCs help the bladder protect itself against carcinogens and other chemicals that can cause cancer.

But a study on rats with bladder cancer may help.  Instead of making the rats eat raw vegetables, they instead were given an extract made from broccoli sprouts.  Rats given broccoli sprout extract experienced a much slower progression of their bladder cancers than rats on a normal lab rat diet.  After the broccoli sprout extract fed rats were dissected, researchers were excited to find ITCs in the bladders of rats but not in their livers.  This indicates that the ITCs were going directly to the bladder through urine production and not anywhere else in the body.

The Raw and the Cooked

Researchers at the Roswell Park Cancer Institute wondered if cooking affected the ITC content of cruciferous vegetables.  It certainly did.  To get the most ITCs, people should eat these vegetables raw.  But cooked vegetables still retain some ITCs.  But they only contain 10% to 40% of raw vegetables.  Researchers did not experiment on black raspberries.
Clearly, diet can affect whether or not we get cancer and how fast cancers can progress in the body.  The team here are Webctor.com also urge their readers to quit smoking and exercise regularly for overall good health and cancer prevention.

This article was written by  Judith Hunter MD, which provides a professional medical content on Webctor.com - world’s health center.

PBS series A Wider World "The New Normal" segment

An open letter to Jason

Above is a photo of my old dorm at Emerson College (sold by the college it is apparently one of the most expensive condos in Boston.)


When I think of college I think of 100 Beacon, the dorm where I lived, and my friends, many of whom moved to Los Angeles to pursue a career in the entertainment industry just like I did in the early 1990s.

There are some friends that I honestly can't recall how we met, but it feels like we have been friends forever.  That is how I feel about many of my fellow Emersonians, including my friend Jason.

Jason is one of those friends who you will always be friends with, that no matter how many years have passed, you will pick up just where you left off the last time you have seen them, even if you can't recall how long ago that was.

Jason was the first person I went to Las Vegas with.  Riding in his white Mazda Miata, convinced that we would never survive the trip in such a small vehicle.  Obviously we did.

Coming from Emerson, a school renowned for its tv and film production it made myself and others laugh when Jason became a production accountant for feature films (Emersonians are not known for their math skills, its kind of an inside joke.)

I don't recall the year that I met his then girlfriend Sharon, but I do remember it was in a production office, perhaps on the Paramount lot.  Weird how some memories stick with you and others float away.

Today I was on facebook during the show.  I read something from one of my college classmates living in LA:

Last night, A friend passed away after a long battle with cancer. She was loved and will be missed. She leaves behind a loving and dedicated husband, my good friend. Sometimes I get so caught up in my daily life that I tend to lose touch with what's really important. Cherish what you have and let your family and friends know that you love them. Life's too short.

It took me a few minutes to realize he was talking about Jason's wife Sharon, who had been battling cancer for quite some time.

Now as a cancer survivor people always try to shield you from others cancer.

I had no idea how bad it was with Jason's wife.

Until today.

I moved away from Los Angeles in 2004, so Jason and I only really connect, like most people, via email and facebook, the way of the world now I suppose.

I know Sharon and he loved each other, I could tell when I met her oh so long ago. 

If I could make it to LA to see my friend (finances or lack thereof are a stumbling block)  I would tell him to remember the good times, that is what Sharon would have wanted.

Waking up tomorrow will be hard I know.

I have lost many friends to cancer but not someone that lived within my heart and soul.

The sun may shine brightly, but everything may seem dark, because she is not there.

For some reason Sharon's loss resonated deeply within me.  Probably because you are my friend, and I know you are hurting.

I read your facebook note to Sharon, and it was hard to fight back the tears:

Dear Sharon, To quote your favorite singer, "I will always love you." I will forever miss your smile and your company. You were the best dinner date I ever had. Somehow you managed to comfort *me* when you were suffering. It was a privilege to be your husband. I learned a lot from you. The house is not the same without you. Misty and the bunny miss you terribly. May you finally rest in peace without pain, pills or chemo. Say hi to Two Sox for me, I know he is by your side. I love you, I miss you.

There are moments in life that we will never forget, people that we will cherish and good times we will hold on to.
Please remember those in your time of sorrow.  

I think it was you who crashed through a screen door in an apartment in the valley, (either you or Del Conte, I can't recall) and you who I chat with over facebook, talking about movies, and your famous boss.

It may be dark tomorrow for you, and in the days ahead, but know that Sharon is smiling down upon you, free from pain from cancer and chemo, healthy and happy and guiding you for the rest of your days.

It is because of friends like you, your wife Sharon, I will continue to fight, I will continue to advocate, it is a long and winding road, and sometimes I feel like an ant sized David against a universe sized Goliath, but that doesn't stop me.


Some friends of mine here wonder why I go go go all the time.  Some of my friends call me "a machine."  That is because I know what it is like to have your world stop, be put on hold for cancer, treatment and the shit that goes with it.  Not knowing if you will ever do what you used to do ever again. 

I play every hockey shift like it may be my last. 

Because you never know it just might be.

Most people don't like to hear those bad 4 letter words that can get you in trouble with your boss, your teacher, words you shouldn't say in front of children.

There is one word I wish didn't exist.

Its a six letter word

Cancer.

 

Survivorship and Depression

I was recently on the PBS series "A Wider World" to talk about my cancer survivorship. Here is a segment they filmed about my battle with depression.