Today: December 4, 2014

Hello,

Thank you to everyone for your support and prayers!  I want to share that we received the lab results that we have been awaiting, and Gabriel's diagnosis is that of what they call  “secondary” HLH. This term is used when 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.  The genetic testing that was done does not indicate he had the genetic marker that they often see in HLH patients which they diagnose as "familial" or "genetic" HLH.  

We met with a bone marrow surgeon with NY Presbyterian/Columbia Hospital who specializes in HLH and bone marrow transplants, as well as with our Doctor this week, and in connection with her own consults with Colleagues in Canada and Sweden, they have decided to stop Chemotherapy for now, and begin a new drug next week.  The hope, is that this drug will attack the cells that are infected specifically with the Epstein Bar Virus which is why they believe his system went into "overdrive", thus causing the onset of HLH.  What this means for now is that we may have a cure other than a transplant, and that is what we are praying for.  The hope is to administer the drug next Tuesday, in the outpatient clinic, intravenously through his port, similar to the way the chemotherapy drug is administered, and then monitor to determine further dosages.  

Last week we were told to explore bone marrow transplant hospitals, which two appointments were scheduled this week. One of which we attended on Monday, but with the news of the cause this week, we were able to cancel our appointment with Sloan Kettering which was scheduled for today, with the hope it will never have to be rescheduled.  As of now his numbers are looking good and we are going to try this new medicine before having to explore again whether a bone marrow transplant is the only cure.  

Gabriel is feeling so much better.  I have to say "Gabriel stop!" and intervene in wrestling matches with his sister much more frequently and that makes me so so happy.  He even had a play date today.  I know that prayers are working.  

Our community and friends have put together a benefit for Gabriel, coming up this Sunday at the Quays. If you are local and want to come by, it starts at 12 and happy faces are welcome.  Here is the link to the articles that the local newspapers have published this week: 

http://queenstribune.com/community-rallies-at-the-quays-for-local-kid

http://queenscourier.com/community-comes-together-for-astoria-boy-with-rare-blood-disorder/

The lemonade of the situation is that we have been overwhelmed with the support from family, neighbors, friends, and strangers.  I want this experience to continue to show the community (not just our neighborhood) but the human community that kindness is still very alive in this crazy world.  

I have not been so great with personally thanking everyone for everything you have done, and as I have said, you are on my list...but know that I pray for all of you and thank God everyday for the prayers and support that have kept us moving forward and helping us stay positive.  

That's all for now, take care.