Background on Jenson's Journey

As most of you are aware, this year has been a really challenging year for our family when Jenson was diagnosed with a rare disease called histiocytosis (also referred to as LCH – Langerhans Cell Histiocytosis) when he was six months old.

Histiocytosis (LCH) is a rare disease that affects primarily young children. Jenson’s immune system overproduces white blood cells and attacks itself.

At first his symptoms started on his skin with strange red lines under his armpits, petechiae dots all over his back when he’d get an infection, and foul smelling cradle cap that wouldn’t go away. The doctors ordered a skin biopsy and confirmed the diagnosis – to which we said “Histio what? Could you spell that please? What does that mean?”. Initially the doctors advised us to watch and wait since he appeared to just have a skin only issue.

In June things turned from bad to worse when Jenson started vomiting regularly and acting as if he was feeling much worse. We immediately suspected the disease but given it’s incredibly rare for the disease to affect the stomach/GI tract (only 42 documented cases internationally ever), doctors believed initially it was just a virus that would go away. After 6 long weeks, our worst fears were confirmed when Jenson was confirmed as having LCH of the GI tract and a narrowing of his GI tract as a result of the disease.

We began chemotherapy the first week of August. First beginning with 6 weekly treatments and then trying to taper to every 3 weeks to minimize the potential for long term side effects from the chemo drugs. Unfortunately Jenson suffered a relapse when we began the tapered treatment with vomiting and petechiae dots returning so we’ve moved to chemo treatments every 2 weeks.

In January we moved to treatments every 3 weeks. So far, no relapses and we continue to pray for the best.

The goal with the chemo is to get his immune system to re-set itself and we're scheduled through at least April 2010 for treatments. At the end of April Jenson will be put under again so the doctors can re-scope and biopsy his GI tract. Best case is in April there will no longer be any presence of the disease in his GI tract and that his narrowing will be better. Worst case, well I'm not ready at this stage to think about that as we're really trying to take things "one day at a time".

Jenson is clearly a fighter! On October 14, 2009, we celebrated his first birthday. We are so blessed to have him and proud of what an incredible job he’s doing with the chemo treatments and in dealing with this disease. Sydney has also been a great big sister through this challenge. We continue to just take things a day at a time and hold onto hope.

Through this journey, we discovered an organization called the Histiocytosis Association of America which is committed to supporting families and helping raise money for research into the best treatment combinations for the disease. If you're ever looking for a worthy organization, every dollar helps support families and raise money for research into better treatment options for Jenson and others affected with this rare disease.

Thank you for all your prayers and support this past year! God is our strength and I'm not sure how you make it through something like this without faith.

While the journey so far has been filled with incredible sadness, fear, anxiety, it's also revealed to us how incredible and compassionate people are. Our friends (and even friends of our friends) have reached out to support us in incredible ways. You have no idea how much we appreciate all the meals, cards, crafts for Sydney, and other incredibily special things you've all done for us. Thank you for loving us.

Love,
Jenson, Sydney, Kristin, and Doug