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.  

After this news, we went through the day at Hassenfeld as routine, blood draw, chemo bag, etc., however, today was 8 weeks...the magic number we had been working toward.  However, the treatment for HLH is not a hard and fast 8 weeks.  His blood counts and "numbers" are looking promising, but we still need to keep on the regime until we know whether the Bone Marrow Transplant is necessary.  Chemo scheduled again next Tuesday.  We do get to stop the steroid treatment which I know will make his life more enjoyable.  He became nauseous tonight and got sick, which is the first time we have seen this reaction this bad so far, but he was a trooper and stuck with us to get his medication taken. 

Gabriel will have another Bone Marrow Biopsy Thursday.  We will go to the hospital in the morning, time TBA, and will hope that the labs show us a better picture then what we saw after his first Biopsy.  We are praying the cells are functioning as they should and that we are near the end of treatment.  He also will need an ultrasound of his spleen and kidneys, and an MRI on his brain.   These tests are also TBA.  As we were talking, Gabriel paid less attention to the DVD he was watching and was listening a little closer.  At the end of the conversation, he asked his nurse Megan, if she would be there when he got the bow and arrow test...(Bone Marrow Test).  Adorable.  We explained that this was the test he had when he was in the hospital and he said, okay,  this is what I had before, and I can come home right after, ok, we can do this.  

So....I asked a lot of questions today, anticipating that I may not be as "together" when they do finally get the results from Cincinnati to put all the right questions out there...after 8 plus weeks, nerves are pretty shot, and the standard answer to my son as to when this is all going to stop is getting pretty tiring.  I also know many have asked me, what next?  So... I asked about the transplant process, timing etc., to try and be informed.  The nut shell is that he would be hospitalized about one week, if not longer to have extensive chemo, which would practically annihilate his cells. The transplant would happen, and then he is looking at anywhere from one month to 6, best case scenario, in the hospital and in a basic state of isolation from the outside world to protect his new bone marrow, some of that time could be at home.  The analogy I was told was to equate anyone with a bone marrow transplant to a new born...no antibodies...no immunity.  We would then start from scratch with every immunization...etc.   The transplant would happen elsewhere than NYU, as the hospital does not perform pediatric bone marrow transplants.  Then became further questions.  Should I have his medical records sent to St. Jude's, or Cincinnati, what do we do?  The answers became more clear the more questions we asked.  Though difficult.  There are several amazing hospitals within miles from our home, which people traverse the world to seek care, including Sloan Kettering and Columbia. Dr. G today told us that we will cross that bridge when we need to, if we need to, and that they would make sure that we were in good hands.  Staying in New York would mean we would not need to relocate indefinitely, and would not need to be uprooted in the middle of the chaos.  The social and emotional impact would also be minimized, which can also greatly improve recovery.  Dr. G said she is nothing but optimistic, as we are all still, so I am praying too that we will not have to walk (or crawl) across that bridge.   

Many people have offered to be a donor....and asked where they can go and how they can be tested.  I am beyond words to describe the feeling we as parents have when someone offers their body to help my son.  I asked the doctor today, what should we do, because at this point if we need the transplant we are relying on the donor bank of strangers to find a match.  If anyone is interested in being a donor, in general, that is amazing.  The way it works, I am told, is that you can ask your doctor, and sign up wherever you are, to be tested, and a record of your test is in a national registry.  The registry is open to all, which is great, because there are so many people that are relying on that bank to save a life.  If there is a match, we will be notified, but if not, you may be able to save another's life in the future.  The bank could contact you in the future and ask if you are interested.  There is no mandate that if you contribute to the bank, that you ever have to actually be a donor, they will simply call you and ask if you are able.  

I also wanted to say that we have been connected with a couple foundations that have helped with some bills.  That has been a God send.  We are still not able to work, and if anyone has the email for the recent lottery winners....forward this post... lol.  We are focusing on the kids, and their health. We have been beyond blessed so far and everyone who has given us hours of their time to organize babysitting, watch Juliette, or brought us dinner, or diapers and cookies, or donated money, have carried us so far.  I would ask if you know anyone who is willing and able that can help financially in anyway, please share his story.  No matter what, please pray.  Thanks for reading this...thank you to everyone for caring, and sharing this site, and keeping us afloat...keep praying, take care, signing off for now...