Who I was before all this…..

So amazingly I’ve been receiving such over whelming support from family and friends but also complete and utter strangers. I suppose that is what blows me away the amount of people who care. I’m just me, a momma trying to teach by living and by example my girls how to overcome challenges we may face in life, hence our motto just keep swimming.

Medically, it was decided with my team to stop my ecp treatment which was once a month 2 times a week. This meant my line got removed. I had it in since october. Today was the first time i could shower and had no bandage it felt amazing. With a line in i had to go to the royal once a week to get my line flushed and having a line in is just another way to get an infection. I was so happy to have it removed. I now only have to go to the royal once a month. That day ill be seen in clinic, then get my blood tested and get human antibodies to boast my immune system and pentamidine which coats my lungs to help prevent pmenimia. That is unless I feel unwell or have any concerns. So that gives me more family time and time to make memories as and when I feel up to it. I am also on steroids which have made a huge difference in my quality of life. As a result I managed a trip out on my scooter to the local park and berry picking. We are going to try and do something little a couple of times a week.

I went to willow brook hospice this week to meet with the creative therapist to see if she could help me come up with and create different ways to preserve memories for the girls. It was such a beautiful relaxing place. I showed her all I’ve done and she gave me a few more ideas. I’m joining a group on Wednesday mornings for 2 hours where I can be supported and create art memories or creative ways to create for my girls. I’m going to start with my hands in clay like stepping stones. Anyway I’m also being referred for 6 1 hour holistic therapy and massage sessions which sounds awesome. I felt very lucky that these are on offer.

Anyway another idea she had is to write letters of  advice and life experiences and who I was before all this happened. It is a great idea and I’ve already started with letters I wrote a 8 page letter about puberty haha. It was great to think I could share momma advice for later in life. It also made me think about who I was and I thought I’d like to blog about that so I’ll be brief but I am so much more then a terminal cancer patient and a momma.

I loved horse back riding when I was a kid. I had A horse and loved being at the barn. I started this when I was about 10 after a Girl Scout field trip. The barn gave me a chance to be me, I wasn’t a very um cool kid but I fit in there. Anyway through horses I got involved at special equestrians, which is a riding and driving programme for people with special needs. Itis where and how I decided I wanted to became a special needs teacher. I loved volunteering there I made amazing friendships, I leaned an amazing foundation for my future career and I just loved being there. Through there I got involved with special olympics and even went to the world games in north Caroline. I loved seeing the people we helped overcome obstacles with the help of an amazing animal. I loved volunteering and helping othes, I used to volunteer at Christ Home and I befriended a little 2 year old girl who stole my heart. I also used to volunteer at a week long sleep away camp for underprivledged kids called camp discovery. I loved being a part of that programme and we were assigned 1 child for the week. It was a tough week but amazing.  Anyway, in high school I was a geek. I felt like I could be myself at the barn but high school I kinda blanked out. I was in the marching band though and I made some amazing friendships that got me through those years. Even from an early age I had a desire to travel and see the world, I loved journaling, reading, and dreaming. I got a chance to go to Europe my 1st year in high school I was 14. I knew no one going but jumped at the chance to be able to travel. We went to Switzerland, Germany and France. The spark then was ignited and I couldn’t wait to see more. I loved seeing the new places and how others lived. The following year I got to go back and went to Spain, France and England. After that any chance I got to explore I took it. Whether it was locally or far away.  Anyway I started looking at colleges and fell in love with lock haven university. I knew no one but it was 3 hours from home in a very small town with lots of open space. It also had a travel abroad programme and I decided then I would go to Australia to study for a semester. I studied special education and primary education I loved every minute of it. I never did well in school but at uni I excelled for the first time in my life.

I made my lifelong friends in uni and discovered who I was. I also studied in Australia, I went my junior year. I knew no one going but I went. I remember sitting in my room, crying, thinking what have I done, then I walked out my room ran into a guy who said your American, there are other Americans here and the adventure began. I loved to explore and my time there was some of the best months ever. I played sport which I was not good at but loved it. I went skydiving, scuba diving, rode a camel, traveled 2 weeks camping through the outback and a hot air balloon ride to name a few. I  made lasting friendships and amazing memories.

After I came home I was even more determined to see the world. I decided after uni I wanted to move to Hawaii and teach for a year. That is just what I did. Though before going to Hawaii in 2004 I got my first e-mail from Amanda Plumb. So along with the excitiment of gradtuating college my first ever real relationship was beginging. Mand knew my dream was to go to Hawaii and teach so after visiting Mand in England for 5 days I moved to Hawaii. We decided, Mand and I, that I should follow my dream and if we were meant to last we would. I moved out there not knowing anyone and just taking a risk. It was amazing. Scary as all get out but Im thrilled I did it. I again made life long friends and really got to live and experience the Hawaiian culture. I loved my students and fellow co-workers. I had some amazing adventures, though everyday was an experinece, but some major hghlights were  shark diving, hula classes, going in an active volcano, exploring the different islands and Ohau where I lived….. but there is too many to name. Mand came over for the month of April and it was magically. I loved sharing the beauty of the islands with her. There is nothing like driving to work along the coast and seeing dolphins jump in and out the water or going for a hike and seeing blue wales. We decided after Hawaii I would move to England.

So on the 9th of August, 2006 I moved to England, again I had no idea what the future would hold but figured why not. My mom said the worst that could happen was I would come home. This gave me the confidence to go for it. I thought if I didn’t give it a try I would never know what could be. I got a job as a teacher at Redbridge High School, a special school for students with serve to profound learning difficulties. I started there in January 2007. I loved teaching there and loved my students and my  co-workers. Living with Mand, she shared her  love of the outdoors and being active and I fell in love too. I was young and new to relationships and living with someone but we grew and learned togther. We were commited to each other and that I know is a rare gift.

We loved going for walks, being outside and camping. I  had a lot of obstacles to overcome to live here. I had to learn to drive manually and on the opposite side of the road. This was not easy for me at all. I failed my first driving test. I was also considered an unqualified teacher, though you can’t go to school here for special education and I held a special education degree, so that was extremely frustrating, but what can you do. I had a lot of steps to go through to become qualified. This included taking a science gcse test, and doing a QTS portfolio and teaching in another school as you cant be qualified in Special education over here so I had to go to a Primary school to teacher train. This was unpaid. To say it was frustrating was an understatment but it was a means to an end. I also needed to take the life in the uk test to get permanant leave to remain. I missed home and my family and friends but over time England became more and more like home too.Ive been blessed to meet some amazing people and make amazing friendships.  I was lucky and would go home for the summer break,  which is 6 weeks  here in England. We had many adventures through the years. I got to see Greece, Switzerland, Spain, Disneyland Paris, we explored England and Wales and I Ioved how we could go and discover new places. We also loved indoor rock climbing. Thats the thing about England it is so much smaller then America and you can be at the coast or in the mountains or in the middle of no where in less then a day. We also extended our lilttle family after we bought our home and got our first baby, Bramble a king charles cavalier. He is 7 now but still our first baby. We loved taking him camping and for walks. His favourite was the beach.

Through all this though,  I really struggled internally loving myself and who I was. After a while I decided I needed to do something I weighed 15 stone 5 lbs or 215lbs and though I wouldn’t admit it I was miserable and hated myself. So I decided randomly one night to join weight watchers. It was one of the best decisions I ever made. I knew I wanted children and I knew my chances of getting pregnant would increase with weight loss. Altogther I lost 60lbs. during that time as I lost weight my confidence began to soar.

I would celebrate ever 10 lb loss. First, we took up snowboarding at the chill factor. I loved it and was hooked. We did that when I got under 200lbs as I couldn’t remember when I had been under 200. We did 3 sessions of that….Other celebrations were indoor skydiving and  horseback riding my final celebration was to shop at fat face as I could never fit in their clothes before. I felt on top of the world when I got to my goal weight. We went rock climbing and I flew up the wall I supoose climbing with 60lbs less makes it a bit easier. We loved camping and going on long walks. It was amazing. The world I felt opened up to me.I loved being outside and exercising in nature I even began to run, which was crazy and I managed after lots of training to run a 5k. I was so proud and finished just under 30 minutes.

The year I was 30, which was the year we got married, 2012. I made a list of 30 things I had never done but  wanted to do the year I was 30 instead of having a party or going away. It was so much fun. Groupon and Living Social became my friend. Some of the highlights were paragliding, flying birds of prey, flying an airplane, going in a helicopter. going to Scotland, exploring different places, going to concerts, moutain boarding ( I hated that), segway rally, I appeared in Weight Watchers Magazine, we got married… to name a few. Our wedding was a do it yourself wedding at an old manor house with about 14 apartments in the Peak district. We planned a weekend of celebration and it was like summer camp for adults.We were very lucky as so many of our friends and family could join us.  For us it was perfect. We had a fish and chip van, pork and beef sandwhiches from peak proker and a bbq. That summer we had a celebration in America, as well. During that year, we looked for things we could do and had a year of adventures. To top it off we went to Scily, for our honeymoon,  which was always my dream. It was amazing and magical. We went in October so it wasnt busy as it was the off season. We had our villa upgraded which was just on the beach and had 3 different balconies to choose from. We loved just exploring in our rental car as much as  the west coast of the island as we could, eating amazing food and going on the nearly empty beach and relaxed. When we got back in the November I got inseminated and I guess the rest has been told.

I haven’t lost my sense of adventure. I suppose that is one of the hardest things to accept, besides the obvious, is how much I can’t do that I really enjoyed. Im not angry…. Im not looking for pity ….Im just saying. When camping and walking and being outside in nature was your passion and suddenly camping is out of the question and you can’t really walk its tough but you adapt and you find new loves. You still go for walks just on your mobility scooter or in your wheelchair. You cant camp but you are alive and well at the end of the day what is more important then that. So i guess I am still me, no illness can take me away. What my passions were are still there. Our girls love going for walks and being outside. They love nature and animals.  I know they will love camping. I look forward to mand introducing our gils to our loves and sharing or adventures and for them to be able to go on their own advetntues. I hope they go on many travels. Mand and I had many places we wanted to see and I  know that though I may not be physically present I will be with them watching them follow our dreams and create their own. We bought glitter and little pots so that when they do go on adventures they can sprinkle some gliter so momma can see and be there too.  But that’s hopefully in the far off future. In the meantime, we will adapt our passions, share the art of dreaming and out love of the outdoors and nourish their curiosity of life. We will just keep swimming and  making important memories whether they are grand or mundane we celebrate everyday and cherish everyday we have togther becuase what we do doesnt matter its that we are together and we have our love for each other. We are truly blessed to be able to be with each other that is a real gift we do not take fro granted. We got this who knows what the future will hold, no one does…. what will be, will be …. our job is to live  each day and cherish each each other, please you do the same… thanks for reading, this was a long one.

 

 

 

 

 

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Go big or go home…..

To say I’m humbled is the understatement of the year…. I guess to go big or go home has always been my motto. When I lost weight it was a huge transformation of 60 lbs. When I got pregnant it was twins. when I decided to share a silly pipe dream it was to chat to/meet/Skype Ellen Degeneres. So yeah, I guess it is go big or go home….. And if not now then when…… 

The amount of shares, views, likes, comments we have seen today has blown me away. I am me just trying to live a life my girls and those that are around me would be proud of. If I can inspire 1 person to not give up then all this is worth it.When I first started this journey my wife said I should write a book. I said no way my story happens everyday. For no reason then it happens we all go through something that isn’t fair, isn’t our fault. I guess at that point we have a choice to face it head on be positive and battle against the tide or to give in, fall down. Well Im a mom first and foremost. When I think of myself that’s what I see and what and how I hope my girls respond to life is hopefully the example I lead. 

I am not perfect….  Listen knowing my time is limited is tough. I don’t want anyone to lose heart and hope reading my story. Bone marrow transplants and chemo does work. This is merely my journey my story, it’s not someone else battle. Just because it didn’t work for me doesn’t mean it won’t work for you. This is why I have been afraid to share what I’m going through. As during all the treatment clinging to the hope that this will work is the only thing that will get you through. And given a choice I’d go through it all again. Because you must believe in hope. It got me this far……

Some days I look at my girls and wife and it takes all my might not to crumble. Every night I tuck my girls in and hold back the tears. But you know what forever would not be long enough. No one knows how much time we have left. I guess what I am saying is thank you for giving me this chance to leave a legacy. To leave a message to others battling a war no fault of their own that winning and battling is not about being cured it’s about how you live your life through it. I consider myself a survivor never a victim. 

Yes I have a dream…. To meet Ellen…. but I also want to thank my incredible medical team  starting at whiston hospital on ward 2a, then the Royal Liverpool hospital and ward 10z my superhero medical team of consultants, doctors, nurses, health care staff, cleaners and everyone in between, the NHS is and has been keeping me alive. I have never been treated as merely a patient or a file or a name but treated with respect and dignity. My teams have all gone over and above their call of duty and I will be forever in their debt. I also need to mention my super hero donor who not only donated his bone marrow but gave me the priceless gift of time and hope. Someday I dream of meeting him too. Giving him a huge hug of pure gratitude and unending love. He has literally saved my life. Without him I wouldn’t have had the past 2 years and I can’t bear to imagine that. He is a real life superhero. 

I just need to say your words and actions aren’t going unnoticed you have all given me such hope and love and positive energy….. My story is long from over….. It will be my body that long gives in before I do because I understand my little body can only take so much but for now we live, we celebrate, we just keep swimming…..much love

No rule book, so we make it up as we go along 

Our beautiful little poppets have turned 3! Can you believe it. It seems like only yesterday I gave birth. They have turned into such amazing little people that make us smile and fill us with pride everyday. Their birthday celebrations were more then just celebrating their lives but also to celebrate what we have been through these past 3 years and what we continue to thrive through. To celebrate is to say we are still living, still making memories not giving up. They had a fabulous little friend party at prendooyls which included a mini disco, party songs, and mini movers. The girls truly felt special and celebrated. Then my mom arrived from America and on the weekend we had their family party. It was quite an emotional day for me because despite being stuck on the sofa I was still here. And we’ll back in January my one and only goal was to make it to see my girls turn 3. 

It was amazing having my mom here as I was very very tired. I slept a lot and my mom was able to care for me while Mand could see to the girls. I felt rough as my skin rash was returning and I had no appetite. I was in a lot of pain and I fell in the bath which required a lot of help to get me out and on top of everything I pulled a muscle in my chest. All this said it was still a magical week making memories. I always wanted to share an afternoon cream tea with my mom but physically knew I wouldn’t be able to sit in a restaurant. Our amazing friends Hazel and Sharon had the idea to bring chime to us and our incredible friends sos and Liz, made it happen by bringing chimes afternoon cream tea to our home and we got to share that amazing memory. Learning to make memories from our lounge is an adaption but we are good at adapting. 

I have met with my Mcmillian palliative care nurse. Unlike in American over here we set everything up so when the time comes it isn’t a crisis and everyone knows my wishes. It’s some tough conversations but conversations that need to be had. My “ideal” death if there is such a thing is natural, pain free, quality over quantity life and in my home. I do want any extra measures if they are  going to make me better however don’t want any that will simply prolong my life I like to hope I have a very long time until this comes into effect but I like being prepared just in case. Though the way I have been feeling I was really worried. I had been getting sick as well from the fatigue and after around 5 minutes my legs start to shake and I need a rest. 

On Tuesday, I had a clinic appointment. I was exhausted and just wanted to go home. My CONSULANT suggested a low dose of 30mg of steroids to see if a little boast would help. He said in palliative care this is often recommended. It won’t extend my life but will improve the quality of my time left here.  O my after only 3 days I can see a huge difference. I have an appetite, my skin rash is tamed, and I am awake. My mobility still isn’t great but I’ll take what I can get. I can only hope that as the steroids take effect I may be able to do a little more. I am not naive and am very aware of the negative effects of steroids. I don’t expect to be walking miles but making dinner or using my mobility scooter might be a nice addition to my days. Though I don’t feel trapped as we have had loads of visitors which keeps us busy and making important memories from the comfort of our sofa. Adapting our life, which we are really good at that lately. 

  Quality is huge and my quality of life is so much better these past few days on steroids. What we need to evaluate next week is if long term steroid use or however, long term I have is worth the pros over the cons. My focus is on quality of life over quantity of life. It makes me really value what is important in ones life. Family,friends, happiness, love, laughter, smiles, sharing in life, that is what it is living is all about.

 There is no rule book, no guide on how to live when you are dieing but I think we are doing a fine good job making it up as we go along. We just keep swimming…. Just keep cherishing each other loving each other and realising no matter how long I have left the days will be full of love and laughter and making memories. 

Until next time just keep swimming….. Love, hug, and live like you mean it. 

Remembering to live

I’ve had a rough few weeks. We were so busy and then nothing, and to be honest for the first week I was exhausted and then it got warm here and my mobility issues slowly have gotten worse so there was no way we could have kept up at our previous pace…. The Lake District, eureka, Disneyland Paris, Disney on ice, away in Wales, numerous day trips, away in Cheshire, center Paris from the willow foundation,  lots of visitors…. It was amazing but I’m slowing down slightly. 

However that does not mean I stop living. Stop adapting to my new circumstances. I’m off my food though I’m trying my best and going to start with ensures to make sure I’m getting enough nutrients. I also throw up randomly, I’d say because of anxiety but I mean that’s a crazy thought… Hehe anyway and I can’t sit for long with my legs in certain positions, mainly 90 degrees and well I can’t walk great either…. However I’m still alive…. I’m still here and the past few days I’ve been reminded by my amazing support network how to live within my adaptions. My one friend said it best…. Your sick, if you get sick, it is because you are sick…. So simple but so true. Those that love me will understand if I need to cancel or sit with my legs up. So maybe I need my wheel chair or my scooter but I’m still here.

My lil Emma told me today I’ll always be her superhero and lil lily told me I’ll always be her superhero princess. My job is to show them how to adapt to what life gives you. How to live and just keep swimming. And though I may forget sometimes it’s all of you that help me remember. 

I’m not waiting to die… I’m living until my end comes whenever in the hopefully distant future. In the meantime, I need you all to know how much your kind words, love, prayers,  support and positive vibes mean to not only myself but to my family especially my amazing super hero wife and my number one cheerleader my mom. And what a gift my girls will have to read someday. So thank you again….

Until next time…. Just keep swimming and be kind to one another o and why I’m at it hug and love like you mean it! 

Operation Ellen and Sandra

I’m am blown away by everyone’s efforts to help me meet my idol, Ellen Degeneres. I know it’s just a crazy pipe dream but well I’ve had to readapt/ recreate so many of my dreams which is completely okay, but I’ve decided to cling to this one. I’m 34, I’m very pleased to have done so much with my short life and the family my wife and I have creatived makes every other dream silly….. But yet I’m clinging onto this last pipe dream, because well why not. 

Life’s been going ok, I’ve been really tired and struggling with stomach sickness and not sleeping great at night. It’s like a vicious circle but I got some new anti sickness drugs so fingers crossed I can break the cycle. We still have managed to enjoy the sunshine and my girls love playing imaginary play in the garden and I find great joy listening to their chitter chatter and laughter. It’s better then any tv out there. They always lay with me and they love sharing story books. So I’ve accepted that I can’t play with them the way I want but at least they know I’m here and with them. Today Emma said to me…. Will you always be my momma…. I had to hold back the tears and say Yes, Emma Rose I will always be your momma. I have to hold on to the belief that my energy will never die and I will always be with those I love. If I don’t think like that I’d never get through the day.

I have a to do list….. I started it when I got my terminal diagnosis. It may sound morbid, but my theory is to hope for the best but prepare for the worst. I suppose the gift I’ve been given is time to prepare, so many are denined this gift. And anyone that knows me knows I love lists and planning. We are so grateful to everyone who has helped me accomplish items on my list especially for my girls wife and those I love. I look at my girls and think without this they won’t remember me. I hope this isn’t true but they reality is they are young. But anyway that’s why we do so much together and photograph everything. My legacy I hope is the way I’ve faced this challenge life threw at me and the love in our girls. 

That said I’m off to do sticker books…. For know we just keep swimming…. O and bombarding Ellen with my story…. Thank you all….on we go 

Ordinary Miracles

Wow so I’m overwhelmed by the response I have received after my first post. I really can’t express how much all your thoughts and comments have meant to myself and my family.

I wanted to explain where the title of my blog came from…. Back in January when I got my terminal diagnosis our amazingly good friends, Sos and Liz,  who own a adorable wine bar/ restaurant in Hartford called Chime…. Wanted to do something for me so they decided to name a pizza after me with me choosing the toppings and for every pizza purchased they would donate a £1 to the charity of my choice and it was up to me to name it. So for toppings I choose… Artichokes, black olives, mushrooms, red onion and red peppers….  The charity I choose was the bloom appeal which is a Liverpool based charity run I believe from the Royal, the hospital that treats me to fund cancer research and patient care. My very creative friends from uni helped me brainstorm a name and we came up with San’s slice of life. So if you are ever in Hartford in Cheshire and what to dine at an amazing family friendly wine bar I’d highly recommend Chime.

There is some crazy stuff going on back home all abut contaminated water in my home town of Warminster, and such. Its crazy to even think about and I hope it’s all hype and not facts.As all of my family and friends I grew up with primarily live in that area still.  It’s scary to think though that there could even be the slightest chance that this diesease that has taken over my life could be caused by someone’s power to cover up harmful chemicals that have been in our water for some time. I kinda am okay thinking I have this disease just becuase I lost the lottery in the gene pool. That it is no ones fault. The fact is even if studies come out…. 1 its a bit too late, and 2, we will never proably ever know for sure. But I’m kinda annoyed that their could even be the slightest of correlations. It scares me to think what people will do for a price. Anway, Im not a policial person and don’t want this blog to be about others this is my journey and reguardless of why Im battling it the truth of the matter is its mine to battle reguardless of the reason.

This weeks been weird for us. Since I got my diagnosis it was all go. We planned loads of activites and days out. My family came over and we were constantly making plans and doing. To be honest we had no idea how much time I had left…. actually we still have no idea. I kinda am still hoping that when I am 80 you all can look back and say wow San you were a bit dramactic in 2016. Talk about trying to get some attention. Anyway, for now we have slowed down and are living life. Still making memories but not the craziness that was going on. Which is kinda good in a way cause no one could keep up with the pace we were at. I am now retired due to serious ill health and my amazing wife in on sabactical leave from work. It’s amazing to spend time just simply playing with our girls. I have been resting a lot. But finally after much nagging from everyone around me listening to my body and trying to take it easy. I can no longer drive and I have intense leg pain if I don’t sit with my legs elevated. My mobility is also very poor but I love my mobility scooter I just need to ‘pimp’ it out slighty haha.

As for what’s next…. well I’m still hoping for a miracle, though after talking with one of my best friends Hazel, maybe the miracle we have been hoping for is happening now. Maybe that despite all odds the fact that I’m still here is the miracle in itself. The fact that on a few occasions my docotors have told me that they don’t understand what is going on as on paper I should be dead. Maybe the miracle is I’ve had 3 amazing years with my family yes they have been hard and yes  I have been and am very sick but I’ve had them none the less and to be honest I’d go through it all over again to have to life I get to live. Its not perfect or how I ever imagined it to be but seeing our little poppets smile and laugh and play is all I need. They tell me I’m a beautiful princess and if you ask them their favourite super hero they will tell you momma…. what more could a momma want. they try to fix me with their docotrs kits…. they make my heart smile everyday so maybe that is the miracle we are all hopping for. Reguardless I am grateful for everyday day every moment every smile.

No Matter what tomorrow is a new day, I’ll wake up to an alarm to take my tablets then I try to fall back asleep only to be awoken by the sounds of 2 little girls laughing and shouting time to get up. And we will go about our day, yes I may need to nap, yes I may need some help but it will be wonderful why because I am here to enjoy it…. so until next time  cherish each other, love a little deeper, have those meaningful talks….  no one knows how much time they have left… make each day count…. just keep swimming

O and Im deserate to skype Ellen Degeneres does anyone have any idea how I can go about this or even a phone call or e-mail would work. She is my idol. Okay now I’m just taking advantage I know, but hey its worth a shot whats the worst that can happen….

 

 

 

 

 

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!