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Gabriel's fight!

Supporting Gabriel through his fight against HLH! read about page

Latest journal entry

Miracles and Hope

Hello, I know it has been a while since I last updated...and so much has been happening, but I knew today I needed to post our hope and our story of our continued miracle...Today we had a check up at Hassenfeld, Gabriel has had a cough so of course I was worried.  He looks great, we are still awaiting labs, but everything else looks great.  In late August I met with the transplant doctor at NY Presbyterian after we got genetic test results that showed that Gabriel, and I, have a part of a dormant part of the gene, linked to familial HLH, that was "abnormal".  It has never been seen in any patient with HLH the way it presented in Gabriel.  The science is so new that the experts in Cincinnati had written it off as not related....the geneticists and NY Presbyterian doctors were concerned.  In August, right after his birthday they said "one" opinion was to do a bone marrow transplant immediately, especially then since he was presenting as healthy....little did I know I was walking into this response among many questions was how...we have no donor.  Gabriel had been on the worldwide matching database for over 9 months, with no match.  His father, his sister Juliette, and myself, were not a match.  I have stayed up at night worrying that if this HLH reared its ugly head and a transplant was necessary, what would we do?  Our oncologist said she didn't read the genetic results the same way, and said they have never found this finding in anyone...One in a million result and because of how wonderful he is doing, and his resiliency, despite a year ago being in the hospital with EBV, which is what they believe originally triggered the HLH, he responded beautifully, a true miracle, so let's believe that he is in remission indefinitely, though yes, a transplant is necessary if it comes back....Today, was a routine follow up, except that we got to wait two months instead of one, which was the longest we had not been to a doctor since September of 2014...and here we were again, anxious and also hopeful.  The last trip in October, I asked if I could have Cecilia tested to see if she would be a match in the instance that God forbid he would need a transplant, now that she was older (was not a candidate for testing at 4 weeks old when we first learned of Gabriel's disease). They were wonderful, in that they did all the standard one year old blood draws, with this specific blood draw, so it was nothing more intrusive for her.   It was a wise decision, given that if the HLH comes back, we will know if we have a match...Today I was told our little Cecilia is a perfect match!!!!  I was in immediate tears, knowing that all this time I was so worried if Gabriel's life depended on a donor, we had I know she is under the same roof.  They want to  do genetic testing to see if this "weird" Genetic marker is also in her presentation, and that may change whether she could be the donor, maybe...but it may not matter if God forbid we need to transplant.  Before I had this conversation with our doctor, I was waiting for labs, etc, and was asked to come with other parents to make a centerpiece for Christmas, and have some lunch.  Gabriel was playing with other children, and staff, and said, "go ahead mommy, make your craft".  What I thought I was walking into was a group of parents making a Christmas craft.  What I walked into was a group of parents, talking about their sick children, kleenex in hand, and no dry eyes.  There were about 20 people, an arabic translator, and a spanish translator.  They asked me to share a bit of my story, to provide hope to the new parents to the clinic...

" Hi, I  am Dana, my son is Gabriel, and we have been coming here for about a year and a half....and I have seen miracles happen"  That was the best thing I thought I could say, and then when asked what advice would I give, I said, 
"ask for help, be grateful of the tiny-est thing, and keep moving".  A woman from Egypt smiled real big, and said she wanted to share her story.  An arabic translator assisted in replaying her traumatic journey before reaching the U.S., where her child was detained for taking a picture of a protest, and had a bullet lodged in his body, and developed leukemia in prison, and went untreated.  She smiled at me, and said, I believe too in Miracles, and God will protect our children.  My neighbor to my left, who spoke only Spanish, with the help of the interpreter shared the same sentiment, he believes in Miracles too...So I said, we are all parents, our children cry, bleed, and laugh the same, we all must know that we are all human, and we are here to support each other.  I pray that at this time, especially coming up on Christmas, and Hanukkah not far past, and for all  humans, that we acknowledge the gifts of today....give to those who need help, and realize we are all takes but 2 seconds for your circumstances to become "their problems", or face a life threatening illness, poverty, or worse...but it also takes 2 seconds to realize that you can help another get through that circumstance...I have had a difficult time saying thank you to each and everyone of you that has helped us since Gabriel got sick, and I am hopeful I will get to personally soon, but I need to say again, to all of you who have prayed, sent support, or lasagna's, we are so grateful, everyday.  Wishing everyone a season of miracles and hope, love from all of us, take care, Dana