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Tristan’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated about our Tristan. Get started by reading the introduction to our website, My Story.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.

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 April 2009 when he was about 8 months old ... and since then a battery of tests have been performed. He took a turn for shortly after the lump was discovered became very ill on Fathers day 2009 just a few weeks later. We learned the disease had spread extensively throughout his body and bones. Thankfully, doctors were able to prove the very rare 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 (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. 

Shoreline Credit Union
C\O Pamela James\Tristan Reif
3131 Mishicot Road
Two Rivers, WI
(920) 793-4541

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.