JLKM

JLKM
Julie

I've been asked to write about myself....
hmmm.. who am I?

My Family!!
My Family!!

As you see my name is Julie, wife to Wies, mom to John and Tom. I'm here because at the age of 14 mos., John was diagnosed with Acute Lymphocytic Leukemia.

Here's my story.

I was born in Jan. 1958, had a regular childhood, grew up with great pain (according to my mom)and along comes this optimist, sweetheart of a guy (a little young and a little polish), we married in 88, lived happily-ever-after until Valentine's Day, 1992.

John was born on his Dad's 25th birthday 12/3/90 and diagnosed with Leukemia on 2/14/92. Only months into chemo John developed ataxia(drunken walk/balance). The neuro docs said chemo.The chemo docs said neuro...round and round we went.We halted chemo a year early and at 4.5 John was shaky but we were celebrating the conquest of leukemia and life was good, cancer was nearly a blessing because we knew the value of life.

In 1997 I noticed him slurring his speech and in August went to work on research, bought a computer and within 2 weeks had a diagnosis. Ataxia Telangiectasia the only fatal ataxia. We had never been told there was a risk/danger only that it was an "inconvenience". Life was hell again. No treatment, no cure, Rare Genetic disorder, wheelchair at age 10. A disease that combines the worst of cf,ms, cp and cancer.

John
John - 18 months - No hair!

We enjoy traveling and have spent the better part of 8
years finishing the house we built. Forever a work in
progress. Everything in our life is consumed right now
with finding something that would benefit John, fundraisers held by parents, ATCP.org, while trying to help Thomas work through his terrible threes. Born in 1996, we have just learned Thomas is autistic. Life continues but never on a "joyous level" like before.

John
John - Age 4

Since 9/6/97 we've been to Disneyland, Knott's Berry Farm, on THE BIG RED BOAT, Seaworld Florida, and other mini trips to San Francisco, the mountains near home, and the beaches of Florida. The highlight of my year has been my trip to Chicago to meet the gals of POKWC from AOL. I'll never forget Dee saying " Thank you God for showing us the positive side of cancer". I couldn't have kept my sanity if not for my Dearheart, the POKWC and the AT parents I've met through AOL. Everyday brings a new challenge and staying upbeat isdifficult without remembering my struggle is not the only struggle. Today we are fighting a school system and society that behave as if cancer kids don't exisit and when they are forced to SEE THEM they then treat them as "less". We, POKWC, KNOW who the trueheros are....and they aren't in the Whitehouse or on the ballfield... I'm inspired everyday...Lucky me!!

Tom & John (Mr. Delightful to his teachers) 1997.

You are listening to
"Wonderful World" by Louis Armstrong