APR 23

To: Our Family of Supporters of Amazin’ Hazen Kennedy- the 4 year-old phenom!

Twenty-two days of wonderful togetherness as a family so comforted by the simplicity of being home.

How lucky are we to be able to spend all of our waking hours together in the throes of watching cartoons, playing video games, reading pop-up books and assembling elaborate Hot Wheels race track configurations. Bliss is having no other care in the world except beating last hour’s high score in the Mickey Mouse V-Smile game. Every moment is cherished by us, including Hazen. For all of us Kennedy’s this has been the most enjoyable time of our lives. On Saturday, we watched TV and played with toys from 8:30 AM until 7:45PM. Father and son have almost perfected our Scooby Doo and Shaggy impersonations. Our son is awake every morning basking in the eastern morning sunlight, sometimes feisty, always Hazen.

For twenty blessed nights Hazen has slept in his own bed on his turf. Our days at home are much busier than when we were living at the hospital (we lost our maid service) and we couldn’t be happier. This time together has been so profound, so deeply invigorating that it transcends all other meaningful experiences: we are addicted to it. It is difficult to describe in words.

Thoreau had is Walden, Monet his water garden at Giverny- we have our Hazen at home.

With Hazen’s secondary ailments (fevers, hypertension, compromised breathing) largely in check, we have been dictatorial about keeping him “in a bubble”. As a cancer family, we are now hygiene experts and keenly aware of how easy it is to catch/spread germs that can be detrimental to immunocompromised people. Even a sniffle would delay his surgery date. Mr. H. (the biggest 4-year old social butterfly) has been such a good sport about being isolated. This constraint has given us permission to live decadently: 12-hours a day of television, video games, computer games, activity books, pretend play, karate kicking, Hot Wheels, …etc. Then there is eating. To stimulate his desire to eat, we entice him with…more decadence: ice cream, frosting, chocolate whatever, Captain Crunch, Smores, artificially colored anything, Scooby Doo gummy fruits…etc.

So far, Hazen has taken to modest quantities of Haagen Dazs vanilla ice cream, vanilla frosting, peanut butter, Oreo cookies saturated in milk, and matzo ball soup with out the matzo balls. This is marked progress compared to his non-existent eating desire in the hospital.

By morning and afternoon we all congregate on the massive day bed. Hazen has his IV pump and tubes that connect to his central line conveniently placed in a backpack next to him in the corner of the day bed. My favorite place is lying down behind him as a “daddy cushion” and leaning my face against the back of his warm baldy-blonde head. Suzan likes to rub his soft feet on the other side of the day bed. Combine this with the playing, hanging out and eating junk food and you can imagine our decadent delight.

Hazen quote of the week:

“The witch made this Zombie out of soup but this bad guy still had a costume on, right?
-referring to the “Scooby Doo, Where are You”- Which Witch is Which? episode.

Spring Bubble

When we venture outside as a family it is brief, taking in the peak of Manhattan spring on nice days. Our little superhero dons a knit cap with double pom-poms, a fuzzy Patagonia jacket, his IV pump/tubes in backpack and his flowery surgical mask while rolling down 10th Avenue in his stroller. Even in New York City where a jaded populace has seen it all, we get curious stares. Our only two destinations thus far have been the Hell’s Kitchen community garden where Hazen was able to walk on green grass for the first time in five months, and the “DVD Store” as Hazen says where he waits outside, watching through the window and giving a literal thumbs up/down to the DVD covers that are displayed for his approval. Going inside stores or any public place is a no-no and Amazin’ Hazen is so agreeable about dealing with this limitation. We look forward to this summer, fall and the rest of this millennium to be back outside in full-force.

Within days we will know if our next leg of the journey is surgery or another cycle of chemotherapy (his 7th). Whichever it is, we willingly accept it as positive and a progressive move forward towards full recovery and healing. Hazen has been going to the pediatric day hospital every 2 days now rather than every other day as before. Each day is one day closer to the possibility of a cure for neuroblastoma and other kid's cancers.

Empower Power

This adventure has taught us among other things that as parents, we have to do everything we can to broker the healing of our child. We look inward, outward, up, down, wherever we can to find any special factor that can usher in his full and complete remission from cancer. We now know that there is a power within each of us. For some it is dormant while others can work in active harmony with it. We look inward and are able to summon deep and powerful forces such as raw love, faith, will, positive projection, visualization–these are some of the factors that when shared and intended toward someone in need, can make a positive difference in outcomes. Moods and emotions affect us human animals in a physiological way.

Looking outward and above... we ask for God to assist us.

Amazingly, we three Kennedys are completely different people now then before November 18, 2004.

So completely transformed as no rehabilitation, retreat, boot camp or self-improvement program can possibly equate. The three of us are each poised to face this life from a new and wonderful perspective. We are also banded together like no other bond.

This is what you shall do: Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people…and your very flesh
shall be a great poem -W. Whitman, New York, NY

Our family so much appreciates your inspiring words, positive thoughts, emotional support, and continued attention. We are so content at this place in space/time but we know we have more to go on the treatment and healing road- 13 more months by most estimates. Being in New York City is a blessing for many reasons. Having a group of good friends has made our new life as a cancer family here in the big city possible as our closest relatives are over 500 miles away.

Please feel free to talk to us about anything, ask questions, or check-in at any time. Silence is more offensive than saying the wrong thing. No one is ever “bothering” us.

With you, we go on and win!

We are the Kennedy family,

Suzan Scott Amazin' Hazen

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