Today: November 5, 2014

Hello, I want to let everyone know that we are hanging in there!  I was prompted by many to put a site together to keep everyone updated on Gabriel's fight against HLH, I want to thank everyone for encouraging me to do it, and for Jonathon Goodro for making it happen.  First of all, if you are reading this, you care.  Thank you!  Gabriel is fighting HLH, and Jaime and I are home taking care of the crew.  Part of the treatment at this point is weekly chemotherapy sessions at the Stephen D. Hassenfeld Center for Children's Cancer and Blood Disorders, and many daily meds,  We have been going weekly for chemo, Tuesday's are our day now.  Friends in the neighborhood have been around the clock offering care and support, organizing babysitting for Juliette while we take Gabriel to Chemo (Cecilia in tow), bringing dinners, and overall giving us hugs and smiles as we stroll to the park or grocery store in our little neighborhood in Astoria.  HLH is explained on various websites, the easiest one I found to understand so far is through Cincinnati Children's Hospital...so I have cut and pasted their description here: 

HLH stands for hemophagocytic lymphohistiocytosis. HLH is a life-threatening condition. It is often caused by an inherited problem of the immune system, which is called “primary” HLH or “familial” HLH. In patients with primary HLH, cells of the immune system, principally T cells and NK cells, don’t work properly to destroy infected or damaged cells as they should. Because of this, the immune system becomes overstimulated and over activated. The immune system then begins to damage the patient’s own tissues and organs, including the bone marrow, the liver and the brain.
Doctors can even sometimes see cells of the immune system “eating” other cells when they look at the bone marrow from a patient. This is called hemophagocytosis. Some patients are diagnosed with what is called “secondary” HLH. This term is used when your doctor thinks your HLH may have occurred for a variety of different reasons, but not necessarily because of an inherited condition associated with abnormal function of the immune system.

Okay so now that that scary description is out there, let me tell you where we are.  We are trying to keep normal, and keep optimistic.  The Doctor's believe as we go through treatment, that Gabriel will be cured.  There are no guarantees but I am certain he will get through this.  There are very important tests outstanding, one of which determines the cause of the HLH, and whether a bone marrow transplant will be necessary.  Jaime, Juliette and I gave blood yesterday to determine matching in the even that a bone marrow transplant is necessary-praying it will not be.  

I will keep everyone posted as much as I can, and try and keep facebook updates upbeat and brief as Gabriel loves to see how many "likes" he gets...and read everyone's comments, I don't want him reading all the scientific explanations and updates, so we will keep it simple there. 

There are so far, thousands of people praying, around the world I am told, and at least one hundred that have offered financial support, babysitting, done laundry....the list goes on and on.  We are so very grateful, truly we are.  If I haven't reached out personally, you are on my list, and I will get to you, but THANK YOU!  Thank you to everyone for your support in all the ways you have given or will give my family.  Signing off for now, take care.