An Open Letter to the President

Dear President Obama,

We join with millions of people across the world in congratulating your resounding election victory and today's swearing in.

Amid your enormous challenges and conflicting priorities, we ask one moment of your time.

The young boy pictured above is our son Henry. He is watching you give your acceptance speech at the Democratic National Convention last August.

He is wearing a hat that was a birthday gift presented to him by one of your campaign workers. It has a special message written on it and bears your signature. It says:

To Henry:
Dream Big Dreams
(signed)
Barack Obama

Henry did indeed have big dreams. As a twelve-year old, he saw his life as full of adventure and potential. He wanted to join his middle school baseball team. He wanted to visit Japan. He wanted to design video games.

He wanted to grow up.

Henry cared nothing about politics, but he could not help but get excited by your message of change, of inclusion, of making things better than they are. Henry's hope was already audacious, but listening to you gave him the confidence to envision even greater possibilities.

But, like your beloved grandmother, Henry did not live to see you elected. Like her, and your mother, Henry was taken down by cancer.

President Bush's budget cut $40 million from the National Cancer Institute in 2007.

The budget of the National Institutes of Health has been flat for five years and, adjusted for inflation, that means that it has declined by $500 million since 2003.

Scientists had to postpone or delay up to 100 of the phase two and phase three trials that are important to establishing new therapies, and the number of patients that were able to participate in clinical trials in the US has declined by 3,000.

The Children’s Oncology Group, the world’s pre-eminent childhood cancer research organization, has been forced to put 20 new studies on hold and decrease enrollment in new clinical trials by more than 400 children.

Estimates are as high as one in three people will be diagnosed with cancer. President Obama, you now have the largest megaphone in the world. Use it, we beg you. As someone personally touched by this scourge, unite the country in a commitment to innovative, aggressive cancer research. Hope carries you only so far. Let us have the audacity to demand a cure.

Most respectfully,

Terry and Cynthia Cermak

cc: Change.gov

New Year's Day 2009

We had a family over for dinner shortly after Christmas. It was bittersweet to see kids playing on Henry's wii - we felt closer to him just hearing the familiar sounds and tunes, but ultimately we longed for him more than ever. Nonetheless, it was a comfort to be with friends and we had a very nice evening.

The following morning, Mrs. F, of our previous night's guests, called to thank us for the dinner. Then, with a hint of hesitation in her voice, she asked, "Have you seen today's paper?"

No, we hadn't.

On the front page of our Sunday paper was a color photo from the Middle School's Hats for Henry:

The paper featured one of those year-end memorial tributes to locals of note who had passed away during 2008. You can read the article here. Tucked in between stories of community giants who championed charitable causes, built churches, schools and community developments was this:

Also this year, we were moved by the death of 12-year-old Henry Cermak, whose attitude in a two-year battle against brain cancer was told through newspaper articles and the gripping "Henry's Blog." Henry especially touched his classmates at Hilton Head Island Middle School and Hilton Head Island International Baccalaureate Elementary School. They did what they could to help, paying to wear "Hats for Henry" to school, or contributing coins. And at the arts center, where his father, Terry, works, a stage full of performers put on a benefit show.

Henry touched a lot of lives.

Indeed he did. What is it about this gentle young boy - whose most visible accomplishments included high video game scores along with his high aptitude test scores, whose mind and spirit shone more with potent promise than actual deeds - that, in two short years, earned him a place among the seasoned, high-profile movers and shakers who shaped this little community during the last few decades?

During the last few months, so many people who barely knew, or never met Henry, have told us how much he touched their lives. One friend poignantly told us that although he did not know Henry at all, knowing about Henry has changed his life profoundly. He told us:

"I sincerely believe that some people are sent to this earth briefly, to teach the rest of us how to live."

The life-lessons Henry taught by example are simple and basic:

Courage - Henry faced his disease and treatments with an astounding lack of fear. When confronted with continuing setbacks and new and strange treatments, he always managed to turn them into adventures. He accepted all the challenges head-on, and expected the same of everyone else. We have called him a little soldier, a gentle warrior and a hero.

One of Henry's weapons was humor. When schoolmates speak of him, one of the most frequently heard descriptions is "funny." Henry sometimes said that he wanted to be a comedian. His sense of humor, however, was not so much about telling jokes as it was the unexpected, disarming expression of whimsy and fun.

Once, we were meeting with a couple of Henry's radiologists, assessing the status of his treatment. As one of the doctors finished his thoughts, Henry, who had been making his own assessment of the colorful silk knotted around the Doctor's neck, blurted: "Where did you get that tie? The guy at the fair couldn't guess your weight?"

As the Doctor was stunned into silence, his colleague literally fell out of his chair.

Acceptance - Despite being a fighter, Henry had the clear-headedness to accept the reality of the here and now. Taking it "one day at a time" is a tired cliche, but Henry knew how to do that in a positive and pro-active way. As the disease and therapies took their tolls, Henry accepted the ramifications while never shaking his will to survive. He adapted to his left ear deafness by noting how it helped him to sleep if he slept on his right side to block out any noise.

Henry's journey left him with an abundance of scars, the first pre-dating his brain cancer. At age three he had a dog bite to the face that knocked out a front tooth and nearly cost him his nose. Later, after enduring four cancer-related surgeries (which all left their own tell-tale markings), Henry brushed aside concerns about a new small scar on his chest that would accompany a new port.

"I like scars," he said. "They tell people who you are."

Faith - Certainly Henry had tremendous spiritual faith, but he also recognized that all people are the tools that God uses to take action on this earth. He also had faith in people to act in good will and in institutions to fulfill their promise of good works.

He had continued faith and, yes, the overworked word: hope, in his eventual recovery. He never stopped planning for the future, even as he made the most of every single day.

Love - Much has been written on this blog about Henry's endless capacity to love, and more will be written later. He unashamedly and freely loved his family, his school, his pets, and his friends.

One of the most painful aspects of Henry's short life was that he was denied the joy of reaching maturity and experiencing romantic love.

Compassion - Henry's third grade teacher gave the class a special assignment right before the Christmas of 2004. The assignment was to write about what was the greatest gift one could give or receive. Here's what Henry, then age 8, had to say:

The Greatest Gift

The greatest gift I could ever receive is no one gets left out. One reason why I would want this gift is because lots of times people get left out and I don't want that to happen. Another reason is that I want everybody to be together and not apart. I hope this is a great Christmas.

As a slight, decidedly non-athletic type, Henry knew very well the effects of being left out, but his counter was remarkably free of anger or self-pity. He found his own true friends but also discovered how to deal with the bullies and loners. He treated them with courtesy and respect, frequently leading them to a point of self discovery. Some of these kids were among those most affected by Henry's passing.

In the last weeks of his life, Henry confronted again the spectre of isolation. While Mama and Dad routinely changed Henry's dressings and prepared him for bed, he usually listened to his iPod, loaded with video game music and Disney tunes. One night he said, "I was just listening to that Jordan Pruitt song, and it made me a little sad."

The song? "Outside Looking In."

Henry tried to define for us what it means to be human.

As caretakers of this gift, Mama and Dad hold the blessing and heartache of bearing this treasure.

As a recipient of the lessons, I have a ways to go.