I don't know why I am writing this other than I need to say whats on my mind.

28 months ago my Joey was born, my rainbow baby joined our family.  For those who don't know, rainbow baby is a term for a baby on the other side of the pregnancy loss journey...  before him I had 3 losses, my Carrick, Rian and Faith.

26 months ago he got sick and NO ONE could tell em hat was wrong.

22 months ago someone finally stopped telling me I was crazy and diagnosed him.  Langerhans Cell Histiocytosis.

But here's the thing.  I remember what was said that day.  "We have good news, it's not cancer."  OK, 22 months later I look at it and think "How the hell is LCH good news, how is it ANY better than cancer."  That announcement did not prepare me for the battle we would face... it made me feel this was something simple, no big deal...

I mean seriously... multisystem risk organ involvement LCH is "good" news?  Um, HELLO!

Honestly, lets look at some facts here lady!  Its not cancer BUT its treated with chemo and steroids, and sometimes a BMT (as is our case).  It has NO public funding for research, no known cause, very little info, and much of what you do find online is outdated.  It is rare and when first diagnosed it is a nightmare trying to find someone else battling it, so you don't feel so alone.  There are very few support organizations to help.  We dance the cancer world, but are told we aren't a cancer family.

Well I say if it looks like a duck, acts like a duck, and is treated like a duck, don't call it a platypus!

So back to my son's story...

He was 6 months old at diagnosis.  Liver, Lung, skin, ear canal and a mediastinal mass (solid tumor) involvement.  This tumor displaced his heart, flattened his arteries, compressed his airway, and went all the up into his throat.  To do his biopsy, they had to have him AWAKE.  Yup, cutting into a 6 motnh old baby's throat with him awake, though sedated and on pain control medications.

5 days later, diagnosis came.  Treatment began.  It was January 5, 2009 the day he received his first chemo injection.  First protocol was working, but in time, the disease started attacking again.  moved to another, and soon enough the disease had progressed.  moved to another and it worked!  But 6 months later he relapsed again.  Moved to another, and was told he needed transplant.  While on the Japan study he got better, then again the disease came back.  So we moved to LCH III, the same one we did the first time.  The goal was to control the disease as much as possibly.  But again, it came back on treatment.  But at this point it was time for his transplant.  We had managed to keep the disease out of his organs before going to transplant.  Which is what we had to do.

Transplant happened.  I will never forget those 7 days of conditioning wondering was I doing the right thing.  More I will never forget the burst of tears when his new marrow began infusing.11:18 PM October 4, 2010.  Joey's new birthday.  His second lease on life.  at 2 years old.

And all thanks to a woman who has NEVER met my son, a 47 year old woman who willingly gave her own marrow to save a child she had never met.

Let me tell you, this woman is my hero.  She gave my son a chance at life.  We had been told so many times to give up.  We never did.  And today he is 19 days post transplant, and I believe he will be OK.  He is a warrior.

But this needs to be said... HISTIO IS NO BETTER, NO EASIER, AND NO LESS SCARY THAN CANCER.  These kids and adults who battle this disease go through the same treatments, the same fears, and sometimes they die.  All too often they die.  And its NOT ok.  This disease needs to stop being pushed aside as "good news" compared to what it "could be" and be taken just as seriously.

Sitting at City of Hope I have talked to SO many families in treatment for so many cancers.  One thing we have agreed on is that it is sad they have to bring you to deaths doorstep to save you.  And thats what they do.  We were told with a BMT, they destroy your marrow to the point you CAN NOT survive without medical intevention.  And honestly, it is true.  Blood, platelets, medications, no immune system, more and more issues than you know how to handle.  But you handle it, you keep plugging away and you NEVER LOSE HOPE.

So today, I ask each person out there to DO SOMETHING, ANYTHING.  Don't sit idly by and watch kids and adults suffer.  Become a bone marrow donor, spread awareness for Histiocytosis, cancer, and other diseases that ROB our children of their childhood, that rob kids of their parents.  Because its not just the patient it affects.  The adults that battle this have families too, kids, spouses, loved ones.  It is a disease that affects the entire family.  And its time that we FIGHT BACK!

DO SOMETHING.  For Joey, for the ones who have become angels, for the children and adults still fighting.  For their families.