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Gabriel - Journal

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Posted 2014-11-19T04:34:52Z

Today: November 18, 2014

Hello,

So today was Chemo.  As I posted previously, we are awaiting the lab results about whether the HLH is "familial" or "genetic", which will let us know whether a Bone Marrow Transplant is absolutely necessary to his treatment.  At this point we are still awaiting results, may be more weeks...and there is no answer as of now as to what we may need to do.  In the interim over the last two weeks, Juliette, his sister, age 21 months, Jaime, and I were tested to see if we were a match. We learned today none of us are a match.  There is a one in four chance that a sibling would be a perfect match.  Cecilia, only 2 months, is too young to be considered a donor, and will not be tested.  [...]

Posted 2014-11-05T19:22:56Z

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: [...]