What being terminal means

Hello to anyone out there who may be interested in my story…. I must let you know my grammar and spelling are dreadful, but I’d like to think my thoughts are worth reading.  First, let me just say that the kind words, positive thoughts, love and support I receive is what keeps me going. I figured I’d give you a brief background, My name is Sandra Bilotta. I am an American living in England.My family all lives in America.  I went to university for special education and primary education. I love to travel and have lived in Australia while in university for a semester and taught in Hawaii for a year. I met my wife, Amanda, through Tricia my best friend, who came to England for a semester. She set us up. Amanda’s family lives down south. That was almost 11 years ago. Amanda and I welcomed our beautiful twin girls into this world on the 22nd of June 2013. We are blessed to have so many friends that are family and provide an amazing support network.  My pregnancy was pretty normal or as normal as one can expect carrying twins. I very suddenly went into labour in the early hours of Saturday morning on the 22nd of June 2013, 2 months early. The girls proved to be little fighters determined to not allow their prematurity to get in the way. After 3 long weeks in the hospital we brought our little treasures home and our life was complete. We enjoyed the craziness of twins and all the blessings that comes with two little miracles. Around the end of August, I began feeling tired and out of breathe with really painful legs and eventually back pain. I just assumed it was due to giving birth and being a mom of twins so I ignored it, until it couldn’t be ignored any longer. On the 25th of October 2013 with force from our friend, Sharon, I was taken to a and e. Long story short my red blood cells were 3.6. If I didn’t get taken there that night the doctor told me I wouldn’t have made it through the night. After a long weekend waiting to find out, I was diagnosed with leukemia.   It was later discovered I had rare chromosome abnormalities with the leukemia cells. I have AML. Against the odds after round 1, I went from 96% leukemia cells to 2%. I thought I was out of the woods. However, after round 2 my cells showed no change, no better and no worse. So it was decided I would  need a bone marrow transplant. I had to have another round of chemo which left me very sick with pnemonia.I recovered and was sent home to get stronger before my transplant. Thankfully they found a match from a 22 year old man in America. My super hero donor literally saved my life.This was in March 2014. I would love to end the story here say I had my transplant and I’m in remission and life is back to normal, but sadly this is not the case. My transplant prep and life after transplant was tough. I thought that I’d have a rough road but I’d get better but my story doesnt end like that….

I had a bone marrow biopsy and at first the transplant was a success but 6 months later  yucky dna luekemia cells  began  creeping back in, that was in October 2014. I needed a top up from my donor in October 2014. Sadly, that was not enough and I had another top up in December 2014. This top up was a large amount of cells and caused major complications though I’m trying to provide the reader’s digest verion. I suffered from brain graft versus host. This is extremely rare and can only be described as a stroke/ phycosis/ anxiety/ living hell as no one knew what was wrong and if I’d ever recover. I did thankfully, but then my skin got serverly attacked from my donor cells. 2015 was a year of waiting for negative bone marrow biopsy results and not getting any. And then coming to the realisation that I was never going to go into remission as I could not have anymore treatment and the cells were not going away.

Bring on 2016, and I got the news that the cells were showing up in my bone marrow and that I was now labelled terminal. How long I have left is anyone’s guess. I am recieveing pallative care and though I’m at the hospital once a week it’s all to treat symptoms or preventative care so I don’t get an infection.

So what will my blog be about…. living with a terminal disgnosis. Keeping my family and friends and even people I have never met who follow my story up to date on me and my family. I always say I make terminal look good and just because I am dying doesn’t mean I can’t live life to the fullest with the borrowed time I have left. I consider myself a surviour becuase no matter  what I have been through  I have kept going with the strength of my amazing wife and 2 little poppets and all of our family and friends. The support we recieve is very humbling. and though I may not be cured of this disease I will go out with my head held high knowing I’ve done all I could do. My daily mantra is just keep swimming….. so I’d like to invite you to join my journey in this crazy amazing gift called life!