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Jordan’s Story

Welcome to Jordan’s Caring Bridge site. It has been created to keep friends and family updated throughout Jordan’s courageous fight with Cancer and beyond.

  ^Jordan Scott Paganelli^  
     11/14/91 - 11/9/09
Jordan/>/>’s fight began on January 11th 2008 when he was diagnosed with Alveolar Rhabdomyosarcoma/> (ARMS) (pronounced: Rab-doe-my-o-sar-co-ma) stage IV. What’s Rhabdomyosarcoma/> (IE: Rhabdo and/or ARMS)? Rhabdomyosarcoma/> (Alveolar subtype) is:· A very aggressive, highly malignant soft-tissue Sarcoma which arises in undifferentiated muscle cells anywhere in the body. · The most aggressive childhood cancer; however, it strikes adults and teens as well.· Strikes at least 350 kids in the US/>/> each year. · Unlike more common cancers, ARMS is considered rare and thus receives minimal outside funding for research (causing the 5 year survival rate to be low). · Often has spread to other areas of the body by the time a diagnosis is determined. When a disease spreads, it is labeled a “meta-static” disease. · The 5 year survival rate for ARMS patients whose disease has become meta-static is approximately 20%. Did you know? · Each school day, 46 children are diagnosed with cancer.· One in 330 children will develop cancer by age 20.· Cancer remains the number one disease killer of America/>/>’s children- more than Cystic Fibrosis, Muscular Dystrophy, Asthma, and AIDS combined. · Rhabdomyosarcoma/> accounts for approximately 3.5% of the cases of cancer among children aged 0-14 years and 2% of the cases among adolescents and young adults aged 15-19 years.Jordan/>/>’s treatment plan consists of a 54- week compressed Chemotherapy protocol called ARST0431 along with 6 weeks of Radiation Therapy. Thank you for the continued prayers for Jordan/>/> and your loving support of our family! Graciously,The Paganelli’s

Latest Journal Update

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Jordan:  Lessons &
Reflections on Father’s Day



Jordan, I feel your energy on this day—the one they call “Father’s Day”.  For me, each year, it is a day spent
reflecting on what I have learned and how my life has been enriched from the
unique privilege of being your dad.   



 



In my mind, Father’s Day is NOT about ME…it’s about YOU.  


Indeed, it’s about the children in our lives
that enlighten and inspire us to peal back the painful layers of burden and
reality so as to more clearly expose the somewhat hidden meanings and lessons
of life.   These lessons often come at a seemingly
unfair price—that of sadness, disappointment, and relentless emotional
pain.  However, this unwelcomed “price” quickly shrinks to
insignificance as we reflect on the pure joy that comes with the privilege of
being the parent of such a remarkable human being. 



 



As I have pondered this thought, I have come to the
realization that: despite its challenges, despite its disappointments, despite
its setbacks and frustrations…life is a GIFT. Each and every day is yet another
opportunity to LIVE and to LOVE.  And, as
we promised, your mother and I are LIVING and LOVING to the absolute fullest of
our ability.  


Our days are fueled by the
momentum of your life and the compelling way in which you so passionately lived
it.   The perpetual fabric of your unremitting
strength weaved a magnificent tapestry of determination and resolve while
foreshadowing a higher purpose to your life on this Earth.  We awaken in the morning to the warmth and
memory of your ethereal smile; and we look forward to the daily reminders that
your spirit still surrounds us with an unmistakable clarity.  Thoughts of you gently capture and fill our
souls as we proudly navigate a world that was blessed to have you in it.  We know that we are truly the keepers of our
own destiny; and we have been blessed by the Lord with a unique challenge to
harness the passions of your life to further enrich our lives with meaning and
purpose.  Life isn’t fair…but we will
never allow its inherent flaws to hinder the
perspective needed to rejoice in the beauty and the sanctity of life itself.



 



So, what have I learned? 


I’ve learned that Father’s Day is not really
about the fathers—but rather, it’s
about how WE fathers have been touched, inspired, and forever changed by the
lives of the young souls that surround us. 

I’ve learned that our children make us who we are; and their journeys serve
to shape the paths that we ultimately walk.

I’ve learned that wisdom and inspiration come in many forms…and is often
revealed by way of our children—whose pure hearts and virtuous minds allow them
to capture and communicate the very things that we have become too blind to
see. 

I’ve learned that our children’s innocence
has the ability to TEACH in a way that
is unabated by the scars of experience, the reservations of age, or the useless
filters of society.  They simply “tell it
the way it is”.  And, in doing so, they
bring to bare a subliminal truth that so often escapes our conscious thought.



 



 Jordan:  it was indeed the supreme privilege of my life
to be your dad.  You remain the very
definition of grace, poise, and strength under pressure.  Your character transcends the ages while your
brilliant memory inspires me to continue walking a path of self-improvement and
discovery.  This is truly the greatest
Father’s Day gift I could ever receive; and, because of YOU, I receive it each
and every day of my life as I reflect on the legacy you have left within my
heart.



 



Happy “Children’s Day” to YOU Jordan—my magnificent 17-year old
son.  You continue to replenish the Well
from which I draw my strength. 



 



 



The Dream IS alive…and the Journey continues…



 



Love



Dad