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 conversation...my 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 none...now 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...[...]

We are on our way!!! Gabriel's wish through Make-a-Wish was to visit Disney World anf we are so excited! Thank you all for your prayers love and support!!! We could not have come this far without all of you!

Hello, It has been a roller coaster since my last post.  Gabriel was hospitalized in December due to him contracting the EBV virus, again.  One test showed over 800,000 virus cells, which lead the recommendation for a bone marrow transplant.  To date there has not been a match found.   Two days later, I asked them to check the EBV level again.  One night in the hospital Jaime said to Gabriel, you know "God is working a miracle on you" and Gabriel answered, "I know daddy, it just takes a little while".  So we will wait, I thought.  They sent the test again two days later. This time he was presenting as fever free, even helping the staff hand out Christmas and Hanukkah presents  to the other children on the floor.  The doctors were worried and had told us this wasn't good news, they expected the HLH to flare as a response to the high virus count of EBV in his body.  Having to wait several days for the EBV results, they gave him two doses of  IV IG, or immune Globulin, hoping to give his already compromised immune system an extra chance to fight this.  The team of doctors and consulting doctors from Sweden, Canada, other hospitals, were confused at best as he stayed steadily progressing.  Over the weekend he was back to his normal self, eating, playing video games, restless to get out of the hospital, and still fever free.  The results came back Monday the 22nd and showed that over 700,000 virus cells had disappeared. They were without explanation on how this could happen... I said to them as we were leaving the hospital that it looks like God has confused the scientists.  A Christmas miracle.  I told our Dr. G., your mind, your hands, and a little help from above...she agreed and said I'll take whatever help we can get.    So from December until today, we have visited clinic every Tuesday, checking labs, watching him grow, laugh, play...Today, Dr. G stopped his oral chemo medication....next step is to wait and watch.  He still only has blood pressure medication, which she is also hoping to reduce as it is an issue only symptomatic to the treatment.  She is hopeful that within a month of monitoring, that if all continues, he may be back at school...and able to enjoy his wish.  He was granted a wish from Make a Wish which he choose to go to Disneyworld.  Wow!!!!  We will sit out this storm, and continue to ask for prayers and support for our family and pray for all of you who have given us so much love and support.  Thank you to all who have loved him, and our family, and all who have helped carry us through this!!! That's all for now...Take Care...I will be helping to organize a bone marrow drive soon....and will keep you updated, but if you aren't in our area...check out bethematch.org and getswabbed.org....these websites can even send you kits to do at home and send in with no charge....give someone the chance to have a match...[...]

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.  [...]

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.  [...]

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: [...]