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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. 

Latest Journal Update

A New Chapter

As I look back at the entries over the last 3 years, it's hard to believe that we are where we are today.

I have good news on top of good news.  First of all, Tristan's scans today went amazingly well. Tristan's areas where lesions remain are either Stable or healing. Several lymph nodes in chest that are being watched closely, have gotten somewhat smaller.  It's what I pray to hear every time we are faced with these checks.  Secondly, Tristan for the forseeable future is done with getting scanned every few months. Yes DONE. The only way he will need CT, MRI or Xray is in the event of symptoms.  The disease protocol has changed, exposing him to much-- much less radiation. It's so wonderful I don't even have the words to describe this feeling.

The stress of these visits on our family is enormous and eliminating them will certainly be a very welcome change. he will still be checked often with bloodwork and physicals, but that is like nothing after what he has endured since he was 8 months old.

Our family is so grateful to every single person reading this, as well as especially grateful to the staff at St. Vincent Hospital Pediatric Oncology. It takes more than just a staff of medical professionals to do what they do. I have no doubt that each of these people are angels on this planet. This applies especially to the Child Life Department at St. Vincent Hospital. You have made this road so much easier to travel. We will NEVER EVER be able to express our gratitude.

I know that deep down everything happens for a reason and God has a plan. I know it. I pray soon he will shed light on the reason for all this suffering, not ony for Tristan but for Kaedan and Ale as well. When one child gets sick, it becomes a family disease and everyone has a role.  the sacrifices these children have made are beyond what I could have ever imagined, and I pray it builds their character, and that they can breathe a little easier now. And be children. Just kids. Not kids who visit the hospital as part of a family routine and worry that the next time, will be the time we face a Relapse.  The healing can now begin. And God know, they have earned this. Thousands of times over. I am so proud of them....

All our love and sincere gratitude, Kristin, Kaedan, Alexandra and Tristan