Only 365 children in the US develop LCH each year. And about 35 of those have Diabetes Insipidus. So to say Whitten John's condition is rare would be an understatement.  They are both defined as 'Orphan diseases', meaning ones that are forgotten and have very minimal research.  They are difficult to understand because most doctors don't even understand them.  

But I can tell you this - the combination of having both diseases in an infant makes Whitten John's case and care VERY specific, tedious, unknown and challenging.  

So what IS it all?  The answer is still being developed. It is an immune disease... it is cancer disease... it is a cross of multiple things.... It takes an oncology team, an endocrinology team, general docs, phlebotomists galore, MRI techs, Pet techs and X-ray techs.  

Currently we are in the process of trying to find the right specialists.  While our local teams are lovely, they do not see cases like Whitten's and we need a team who can support us completely.  We are in touch with a renowned specialist out of Texas Children's, Dr. McClain, and we hope to be traveling to Austen soon to get more intricate care.   We are also in search of a new endocrinology team.  Our current team encourages us to withhold water from Whitten on a regular basis, and my learnings continue to prove that is EXTREMELY PAINFUL.  They don't understand how difficult it is for him and us.  

How do you get it? They don't know exactly... could be exposure to toxins, family history of cancer, parents exposed to solvents, thyroid conditions...or who knows.

Let me break it down in my terms:

We have dendritic cells (tree like in shape) that are meant to fight infection. They are part of our immune system and they are GOOD!! Langerhans Cells are good! Unless...

there is a gene mutation which results in cells gone wild. And too much of a good thing... is not a good thing. These mutated (once disease fighting, immune supporting, good cells) start attacking the body. They form granulomas but it's kind of like they start eating at bones or skin or organs.

For Whitty J, they are eating away at his bones - specifically his hip and skull. You can feel the soft spot in his head that once was skull and walking can be painful for him depending on the day.

And unfortunately the cells also attacked his pituitary... this is an incredibly important organ in the brain behind the eyes. It controls our hormone functions like our urine hormone (ADH), growth hormone, testosterone and more... Thus the Diabetes Insipidus (his body doesn't produce the hormone to stop peeing so imagine peeing out anything you drink 5 minutes later... this is not safe and dramatically inhibits your lifestyle)...from here on out we will do regular scans and appts to make sure his other hormone functions aren't being affected. And we will pray A LOT!!!

So Whitten John has landed on one of the rarest of rare conditions.

Now the good news!

LCH has a survival rate as high as 99% in the type he has! It is treated with many different things including Chemotheraphy (moving to other treatments if this doesn't work). Chemo last about 12 months, but could be longer. It isn't 'cured' but you go into remission and 60% of people do not relapse. He will get scans continuously throughout his life to keep him safe.

Now the Diabetes Insipidus is another animal. Most cases of LCH are trying to react before the pituitary is involved. Since our little WJ has the pituitary involvement already, our greatest tools is PRAYER and MIRACLES. It is technically not curable and is a lifelong disability... BUT... I HAVE HOPE and I TRUST IN GOD.

So there is your little lesson plan in LCH and DI... there is so much more and I will continue to share b/c the more people more, the more we can know and the earlier people can catch things.

Oh and last thing - WHITTEN JOHN IS A WARRIOR and he is going to surprise many people with his journey and the way he changes the WORLD!! I believe in that with my whole heart.