Our friend Julie sent this in and I sure hope you can help!
Chili Supper for Tristan's Triumph
Friday, February 05, 2010
Location: St. John the Baptist School - Commons
City of Green Bay (Brown County, WI)
A Charity Chili Supper from 4-7 pm is being held for 18 month old Tristan Reif. Tristan is battling a rare blood disease called Langerhans Cell Hystiocytosis.
Adults $10 Childre......n $5 AYCE homemade chili, salad, bread, soda, coffee and dessert. Benefit fund: Shoreline Credit Union Visit website for more info on Tristan's Triumph
Tristan is Battling Langerhans Cell Histiocytosis. He has a multi-system case with risk. It means the disease is in several organs including a risk organ. In Tristans case the risk organ is the C-spine.
We first noticed a lump on Tristans head back in early April when he was about 8 months old ... and since then a battery of tests have been performed. He took a turn for the worse and became very ill on Fathers day just a few weeks ago. We learned the disease had spread and now doctors have proven the Langerhans Diagnosis. We really thought it was a cyst or just a bump but would soon find out it was so much more.
He had his first chemo treatment today(6-29-09), and while it was difficult for such a little guy, overall it went well. Now we are just waiting to see if it will work. The next six weeks are critical. We also give a variety of medicine at home we hope will enhance the affect and help him to feel better. The pain meds are keeping him a little more comfortable.
We believe he is our angel and as difficult as this is....we will fight for him.
TRISTAN BENEFIT FUND
Shoreline Credit Union
C\O Pamela James\Tristan Reif
3131 Mishicot Road
Two Rivers, WI
The cause of LCH is unknown. It may be triggered by an unusual reaction of the immune system from something commonly found in the environment.
Over the years, cancer treatments have been used in patients with histiocytosis. Consequently, hematologists and oncologists, who treat cancer, also treat children with Langerhans cell histiocytosis. However, the disease is not cancer.
The vast majority of patients will survive the disease. Some may develop life-long chronic problems, while others remain symptom free. In some cases the disease is fatal. Usually these are infants who have a rapid downhill course and do not respond to any known treatment.