Justin, forever 12

Welcome to Justin's page. Justin was dx with rhabdomyosarcoma on 11/98 at the age of 8. He later relapsed after 9 months off chemo. Then, 18 months of more chemo, two months off, and another tumor....Justin tiptoed quietly to Heaven on July 10, 2002. He is missed by many, but has left many happy memories behind.

The Hard Part
By Justin's mommy

There is no cure for this
We seek but a comfortable maintenance
The hard part has yet to come.

Treatments cruel and mean
Sickening beyond belief
Quality of life is the key
The hard part has yet to come.

Young in years
A child's face reflected in the mirror
But held within it lies
Wisdom of the most aged mind
Which takes the pain of a very evil kind.
The hard part has yet to come.

Dark and sunken eyes looking out
On things we can no longer touch
Playgrounds now lie beyond our means
Compromised immune systems make them but a tease
The hard part has yet to come.

Through a mother's eyes we see
A pain that can not be put to ease
Hopeless cureless a cruel disease
The hard part has yet to come.

Hands reaching out to grasp
That which can no longer last
Holding hugging longing to remember
That which should have been forever
Kneeling praying asking begging
That the hard part never comes.

Journal

Sunday, February 17, 2008 1:54 PM CST

Never fear, I'm still here, and the story goes on. So sorry, I've been wanting to update for so long, but it's so hard to find words these days. They don't come cheap ya know.

The reason for this update, is to shed a little light on the how and why of Justin's situation. In September 2003, Justin's father was dx with basal cell carcinoma nevus syndrome (Gorlin Syndrome). Fortunately, Roland has not suffered too many of it's manifestations, but upon researching this syndrome, one thing stood out above all others. It can predipose one to rhabdomyosarcoma. Bingo! This syndrome is an autosomal dominant disorder, meaning that with only one parent carrying the gene, the children have a 50/50 chance of inheriting it. In the spring of 2004 we sought out the help of a genetic counselor, and with the help of Justin's medical records, it was determined he had inherited this syndrome.

We are all doing OK, we miss the little guy and all his wonderfulness...he was so silly, so strong, so sweet...sigh.

E-mail Author: StoneyEcho@aol.com

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