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!

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17 thoughts on “What being terminal means”

  1. We love u all so much. Words can’t describe the week we just shared and seeing your strength is just amazing! God works in mysterious ways, we Pray everyday for a mirical. Keep your head up and just keep swimming and know we’re right there behind you supporting you every step of the way!! Hugs Sister. Love u tons!!

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  2. As usual,you continue to inspire and teach us what is important in life! You make the MOST of every day and watching your journey is a true life lesson.It’s taught me not to take anything for granted. Wishing you MANY,MANY MORE MEMORIES with your family and friends! Thanks for being YOU! xo

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  3. Welcome to WordPress.
    You can share your blogs using the links underneath each entry you post.

    Keep shining; keep smiling; keep enjoying yourself…and of course keep swimming xx

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  4. Dear Sandra Hello ! My name is Michele. I live across the street from Mike. Heather & Debbie I am aware of ur story Whilei was unable to donate $ to ur cause I have sent prayers I was very happy to see the pics recently from Mike & family visiting. I had a cousin that fought a tough battle against cancer for 9 yrs so I have a bit of understanding of how difficult the battle is. There is nothing that I can say that hasn’t already been said so I will just wish you a beautiful sleep when u can swim no more 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏

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  5. Sandra,
    I know it’s been forever since we worked together, but I love following your story. You have so much strength and fight in you. Our lives are very different now compared to the young kids we were at ESY. I remember carpooling and belting out our songs. Under the Sea, Had a Bad Day Again and so many more. I want to thank you for all the fun and great memories you shared with me in the past and also thank you for being a courageous and amazing influence to so many now. Just Keep Swimming and know that you have beat this already and you will continue to go strong and live life to the fullest with the support of friends and family!!

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  6. Wow Sandra what an incredible lady you are. Keep smiling. Missed you at playgroup.
    Lynda (Parkside Playgroup) xx

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  7. You have taught me what it is like to truly be a strong person and to truly enjoy everyday of your life. Much love, peace and strength.

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  8. Sandra, it’s Donna. You may remember me from long ago when Tommy and I dated. I was saddened to hear about your diagnosis. I will donate when I can. You are such an inspiration! Thank you for sharing your story. Sending love and good wishes from across the pond. Keep on swimming!

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  9. Keep fighting Sandra!! I love you and wish you many more happy memories with your little girls, your wife, and your family. Just keep swimming.

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  10. Sandra you have endured more than I can imagine and yet you are still reaching out to others and inspiring us to, like you, make the most of every precious moment of our lives. You have created a lasting legacy through FB and this blog that will remind us all of what is important in life. When the girls are older they will read it with pride as they will understand the strength it took to make the memories they will have. I wish I lived closer and could visit and give you a hug in person but please know you are in my thoughts every day and my heart forever. Love Mads

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  11. Sandra, or as I always called you Gabby, Please know that many thoughts and prayers are coming your way from across the pond. Believe me Michelle and I are so sad and our thoughts are with you always. Of all Michelle’s friends you were always in the top two. From the first day I met you I knew you were someone special and always enjoyed seeing you and laughing with you. I called you Gabby for a reason, you never shut up and talked very fast, but that for me was your most endearing trait. I don’t know if you remember me telling you that my Dad went thru the same thing you are and he fought for four years but in that time he made cancer his bitch just as you have. Never giving up and being strong.
    As the tears stream down my face with the thoughts of you and my Dad just remember you are loved by more people than you know. Just keep swimming Gabby, and if you get tired just do the back stroke and look to the heavens. Love ya, Gerry Boone

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  12. Hi Sandra, Madeline has kept me up to date with your battles but also the great things in your life like your two beautiful girls. It seems so long ago when you were at UNE and you would come out to our place at Arding for dinner.It was great catching up with you and Amanda when we were in England even if it was for too short a time. I can’t remember whether we got you onto one of our horses but we seemed to get everyone else on one of them so I am sure we must have. I would love one day to get your girls onto a horse out here.
    Anyway Sandra I am thinking of you and Amanda as well as your girls.

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  13. Sandra, not sure if you remember me but I went to school with Tom. I had no idea about your diagnosis. 😦 But I am amazed at your strength and courage and I want you to know that I will be praying for you and your family! Just keep swimming!!!

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  14. Hello Sandra, I’ve come across your page today via the video clip you made. I’m pretty certain you were in Whiston hospital at the same time as my husband Mark. I remember a lady in the room opposite him on ward 2A with beautiful twin baby girls who had family visiting from America so I’m guessing that’s you. Mark also had AML and sadly passed away in November 2013. I’m so sorry to hear your story and treatment hasn’t had the happy ending we all hope and pray for. I hope your final wishes and dreams come true. You and your family are in my thoughts and prayers. Cheryl xx

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