Monthly update…. 1 day at a time

To begin with, my mom came to visit over thanksgiving. It was amazing having my mom here. And surprisingly thanksgiving worked. We pulled it off. I was the delegator from the sofa but I managed to make my daddy Roy’s and mine secret stuffing. It was sad not having my dad with us but my mom was here and he was here in spirit this i know for sure.  but Thanksgiving was a true celebration about what being thankful blessed truly means.

With my mom we made the most of her time here.  We decorated for Christmas, ate at chime, saw dream works lanterns in st. Georgie’s hall, saw Father Christmas, went to the Manchester markets, swimming and spent lots of time hanging out. It was just what we all needed.

Then we had a rough week busy with my radiotherapy which was tough but levitated the swelling in my legs and the pains on the right side of my body. I’ve spent most of this week recovering from it as it knocked me and left me pretty drained. When you already suffer from fatigue more fatigue is not fun to say the least. It did what it was meant to and for that I am grateful.

So I’m not really sure what to say or how to say it about my current health status…. it’s time for my monthly update and unfortunately this month the news isn’t great. Yes the leukemia is not in my blood or bone marrow…. instead it has invaded the soft tissue within my body. I have had 2 falls in the past 2 weeks.

But to get to the point after a very long chat with my medical team and describing all my problems / symptoms we decided that there is nothing more they can do for me. Though my blood is fine the leukemia is attacking the soft tissue cells within my body.  I knew something more was going on. I knew I wasn’t right on the inside regardless of what my blood told us. I felt relieved when I was told as it wasn’t all in my head. I knew something was seriously going on and my blood was just staying good which wasn’t how I was feeling. . I was worried it was me. I just was giving up. But I’m not. I’m continuing as best I can. I am living the fullest life I can. What does that mean…. just because it’s not in my blood doesn’t mean it is not in me running havoc making me weaker each day. My quality of life has diminished but we make the most of each day.  and though we keep going day by day as best we can that says more about my determination and my support network rather than a measurement on how I am doing medically. Again what does this mean….. I am terminal I have been all year but now it’s more eminent. It’s more a reality. My body is tired and taking much more of a beating. We are taking life one day at a time. It’s not like I have been told I have weeks but I most likely don’t have years either. I’m not going back to the hospital for any more appointments and instead will be seen by the palliative care team. I will probably have this sorted after CHristmas. We are looking at pain management and just keeping me comfortable and able to have a quality of life as best I can manage.. Most importantly reading stories, swimming and enjoying my amazing family and friends. How do I feel about it all. Im a bit robotic I suppose. I can’t look at my girls and think about it who could. I can’t look ay my wife and think about it. I can’t talk to my friends and family and fully think about it. However, I can smile and say I am ok. Whatever happens we will be okay. I have been dealing with this for a year now I know I am not okay internally. I fell like I am falling apart, slowly but I am weak. Amanda the superwoman she is my full-time carer. SHe brings me all my meals helps me with my self-care and is currently moving the single bed to our front room so I don’t have to make the steps anymore. SHe is simply said amazing.

What we do next we keep living one day at a time counting our blessings and living life as only we can. We just keep swimming. Please  we welcome love and support. This was not an easy thing to write but you all need to know. We need love and lots of it. in the meantime cherish each other, hug like you mean it and love life as you only can.

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We adapt like we always do

It’s been a month which means I’ve been to the hospital and it is time to update all you wonderful amazing people who take the time to read and follow my journey though this crazy thing called life. First let me say, that my blood type has changed again. Craziness really and not really a great thing, but  when I started all this I was B+ then I went though a lot of chemo and radiotherapy and had a stem cell transplant and my blood group became A+ now not so much good news but all my own cells have returned and I am back to being B+. The human body is beyond complex and amazing.

So my CT scan results are in and unfortunately the news isn’t  what we hoped for but it isn’t unexpected either. My scan showed a shadowing on my adrenal gland or however you spell it. it is located above my kidneys and apparently my kidneys are struggling.I am off my water tablets and the pain in my lower back is related to these findings.  Basically the leukemia is infiltrating  my kidney and gland. It is also in my blood. My blood count yesterday was 7.5 so I was brought in today for 2 bags of blood. I was retested this morning and it had dropped to 7.2. What does that mean …. the leukemia is affecting my blood production and I will probably need transfusions more regularly.I will also need to go to the hospital more regularly for my blood tested. It also means on paper my time is limited but then again it was limited in january so who knows. Basically when I asked I was told how long is a piece of string. No one knows how much time we have left. Up till now I have defied all odds and I plan on continuing to do that now. Am I scared yes, am I worried yes am I afraid a little am I human and not a robot yes.

What else does these mean, I may need to rest more, so that on the days we do things I can manage it.  We may need to adapt a bit and cancel some plans but we keep going, this changes nothing.

Our family fun list now includes my momma coming tomorrow and being able to swim with her and my lil family, meeting Jodi Piccoult (my favourite author) , Thanksgiving, seeing Father Christmas, lunch with dear friends who are family, Steam train with Father Christmas, Dream works exhibition in St Georges Hall, Christmas Science workshop, hopefully the Manchester Markets, Seeing the philharmonic orchestra with the girls in a toddler Santa special the pipe dream of skyping with Ellen……. and anything else that comes up in the meantime. If we can’t do something then we cancel we adjust we adapt. Thats what we do. We just keep swimming.  We celebrate that we are here and embrace each other a little tighter and say I love you like we mean it. We cherish each day. I don’t know how my story will end, none of us do, but never will it say I gave up! Thanks for reading…. just keep swimming.

 

 

3 year rollercoaster anniversary

It’s been a month and I realised Ive not done an update. I was at the hospital last week for my clinic appointment. I had been struggling with stomach pains and my right side hurting. I am waiting on a liver scan and ct scan to see what is going on inside me. We aren’t sure if it’s wear and tear, something fixable, or I have an enlarged liver or spleen. I was given some tablets for my stomach which have helped with the cramping.  I just can’t lay on my right side at night as it hurts. I was struggling with my right shoulder as well, that comes and goes for no rhyme or reason but when it does I just have to take the pain meds and relax. Im doing quite well really and can’t complain. My levels are good and we are making plans for the coming months which is fun. I need to still balance doing and relaxing but this is all a matter of learning to really listen to my body. My doctors are still in awe with me so that makes me happy.

We have been busy making the most of the beautiful autumn weather here over the last month visiting some farms and the safari park as well as doing a toddler plod to raise money for POD at guillvers world. All in all making memories as best we can.

We still get to swim every week which is amazing. the girls are doing so well and love it and my body says thank you each and every time. The amazing friends we have that help us are incredible. We are so very blessed. I can’t explain the freedom swimming gives me and the opportunity to play with the girls. Its just amazing.

The girls have been going to science class and dance class as well which they love. It’s so cute to see them make friends. We went and looked at their school for next year. They loved it as did we. They seemed happy to go and play and explore without us. They looked so old. We couldn’t be prouder. We love having them home with us but knowing where they will be going next year and that they liked it is a good feeling.

AND i got on a horse. It was beyond amazing and very emotional. My body went right back to where it remembered and it felt like going home. I can’t explain and unless you have had that relationship with a horse I’m not sure you’d understand it fully. Yes I needed help yes I needed a ramp. But I stayed on the horse on my own. I had a leader and someone walking along beside me chatting but not holding my leg.  The girls were so excited to see momma on a horse. I couldn’t stop smiling.

This is a short one as my shoulder is still a bit fragile and I don’t want to over do it. But I wanted to keep you all update. We am here living life as best we can. Happy to make plans and you know what if we can’t do them then we cancel. Its better to plan and dream then to sit and do nothing. Each day is a miracle to me. A true gift. In 5 days it will be 3 years since I was diagnosed. Scary to think where the 3 years have gone. I mean I know but still life is crazy and goes by so fast. Enjoy it all the mundane and the huge.These 3 years have been and continue to be a huge roller coaster ride that we are blessed to live. |Until next time…..Just keep swimming.

Ellen update…. I have heard nothing. I e-mailed and mentioned the person who called me but haven’t heard back. Im still here Ellen still swimming, still trying to spread the word about loving and cherishing life no matter what. That is what we will do.

Much Love to you all for your caring thoughts, prayers and positive vibes you are all amazing and we are so grateful for your kindness and support and to have you in our lives.

 

Living an adapted full life until I can’t

We have been busy and I thought it was time to update all you amazing people. I try to update once a month after my monthly hospital appointments….

As for this months, it was last Friday, I had loads of blood tests done to test my immune system’s blood levels. the test names made no sense to me but I’ve not received a phone call so in my eyes no news is good news. These tests will see if I still need antibodies once a month and pentamodine, which is a breathing treatment I get once a month that coats my lungs to prevent pneumonia. Anyway, clinic wise we have decided to try to reduce my steroids from 30 to 20. I don’t however, want to go lower then 20 as my energy levels will then be effected. So for 2 weeks I’m at 25 then for 2 weeks I’m at 20. Then if all is okay I will remain there. Though for appearances I’d love to be off them as I hate my fat face and bloated body but I have learned to accept them as I am like a new person on steriods. I am just vain. Yes, I’m told I’m terminal but I am still a girl and I am still vain.  My chest infection is gone but I have been left with scar tissue filled lungs which results in random coughing that makes me sound like I have smoked for years and a lovely husky voice. My mobility is getting worse but I’m happy with life and in my world I feel good. To most that would probably equate to horrible but for me its good. My docotor said to just keep doing what I’m doing because it is working, no medical reason is there for how I am still alive and there is no need to question it.

Last month we started our adapted family fun list once my steroids kicked in and I began to have energy again. I accepted my wheel chair and my limitations and began to find ways to still make memories and live life with my family rather then just living in my lounge. This month we have been so busy making memories and well educating the girls in the world. They are sponges right now and absorbing everything. They are learning so much for our outings. Their imaginations are phenomenal and their memories and stories they tell are so exciting and fun. Seriously being with them and Amanda and having adventures is a pure joy. I know we are so blessed despite it all and so beyond lucky to live the life we live. Yes, I have complaints and limitations some major okay some huge but I get to spend everyday with the ones I love and we are trying our best to live a very full life. So  to answer anyones questions, no the girls aren’t in nursery. Over in England they are eligible for nursery from 3 years of age, 15 hours a week. originally, I had planned on being in remission and was going to use this year as my maternity leave with the girls…. well life never goes how you planned. But since Amanda and I are both off, her on sabbatical to be my carer and well Im retired we are blessed to both be home with our girls. I suppose technically we are home schooling though at this age life is about playing, socializing, being messy and having fun and if learning occurs which every educator knows it does then it does.For instance, today was about being lil farmers and the amount of knowledge they gained from our day out was immense. They are little sponges absorbing everything and we couldn’t be prouder. They are so good and kind and loving , okay I’m obnoxious but well Im a mum thats my job. I was raised to take my job very seriously I was after all trained by the best.

So reflecting on this past month I have realised a very valuable life lesson or truth I suppose you could say and its huge really….. When I got my terminal diagnosis back in January I felt like it was… quick make as many memories as you can before you die. Dieing was always there. Being terminal and thinking this is the last time was a constant…. then I went down hill majorly…. I had a really rough few months where to be honest I merely existed. I was exhausted, had no appetite and well was beginning to give up as a result. Not a fun place to be really. But that was my life I felt like I was dieing or waiting to die. When I spoke with my doctors the decision was to put me on steroids and see if that would help.

Fast forward a few weeks and well they worked. I had to then accept my limitations and my physical challenges. Once I was able to do that with the help of some amazing visitors from America we created an adapted family fun list. Well fast forward 2 months and our adapted list has been well completed. We are now searching for more things to do. Thanks to schools being back and vouchers we are able to do loads with very little. The weather has also been our side.

I suppose now I feel like I am, we are living as a family until well i can’t anymore. It might not sound like a difference. But it is huge. I am not just existing I am living and living a life to the fullest I am capable of.

The biggest joy has been swimming with my girls. I thought this would never be achievable as I am not allowed in a public pool. Thanks to the amazing school I worked in and the amazing selfless huge hearted people I worked with my dream of swimming with my girls and teaching them to swim has become a reality. My school that I worked in has a brand new hydro therapy pool. I asked if I could use it sometime. Now because I have my own issues, besides Mand we need 1 other in the pool and 2 people on the side. All these well living angels have stepped forward, some I have worked with and some who have never met me before have stepped in to make our dream a reality. To top it off being in a hydro pool is the best physical therapy I can receive for me personally. Once a week I am weightless and my body relaxes. It is better then any pain management I take and believe I take a lot. Even better I can hold my girls, play chase and teach them a skill. When you can’t even bend down normally this is huge. I , my family will be eternally grateful to our ordinary living angels that help us make this a reality once a week.

Next Friday, I have my first horse back riding session since before the girls were born. yes it is in a therapeutic riding centre and unlike all the years I volunteered I will be the student instead of the volunteer. I need a ramp to get onto the horse and people to help steer the horse and keep me safe but and heres the BUT i will ride again. I am crying as I write this as I never thought I would ever ride a horse again. The joy I will get out of next Friday far outweighs the fact that I am disabled. I am still me I am Sandra a horse back rider who happens to have terminal cancer which has happened to left her disabled but I am still making dreams and following them.

All that said, I can still can’t think past a month at a time. I am afraid to get excited about the future and can’t bear to think about Chrstmas much less November or the end of the October for that matter. My reality is still there but unlike beofre this is at the back of my mind. It is not important really…  what is important is the here and now. Today is importsnt this moment in time matters. Whatever the future holds I hope and believe my girls will know I lived the fullest life I could until i couldn’t anymore more. And then they will carry on following my example. Becuase that is what life is about… not just floating through but swimming the hardest you possible can no matter what gets thrown at you… we only get one shot at this… I am going to make sure my one shot goes down in history maybe not by many but in my girls and my loved ones eyes and hearts.

So until next time…. love like you mean it…. cherish everyday… hug, celebrate, enjoy as best you can… keep swimming and to all the memebrs of team Sandra from the bottom of the Plumb-Bilotta’s family heart all we can say is thank you… your positive vibes, love and support means the world to us…. just keep swimming

 

I am a miracle…. its official my doctor said so!

Today has been a really good day and I wanted to share it with all of you…

So basically 2 weeks ago when I was at the hospital I had my blood tested. I got a phone call saying my red blood cells had dropped to 7.9,  which mine average around 9. something though most people are higher. Anyway, I knew I had this silly chest infection, so though I worried, I was not panicking anyone. I say this because when my blood levels start to drop my first thought is the leukemia is attacking my blood production. This will mean my time is very limited.

Let me explain a little medical stuff as I understand it. Our bone marrow makes all the blood cells for our body, the red cells, platelets and white cells. The white cells fight infection. My bone marrow is still very immature. Like a new born really though lacking the nourishment obtained in the womb and vaccines as once I had my transplant they were irradiated and due to many complications never redone. So when my body gets an infection my immature bone marrow cells have to not only produce all the blood cells for my body but also fight the infection trying to attack my body. At this point after transplant my cells should be less immature however, which is what makes me terminal, is that my own cells have begun to regrow. This is bad as my own cells carry all the dna to create the yucky leukemia cells so the more of my cells that my body produces the more the leukemia develops.

However, for some unknown reason my superhero donor  ninja cells though diminishing are doing their ,excuse my language, damest to fight back. For whatever reason, and the reason is beyond medical explanation, at this point they are fighting hard and not going down without a battle. Maybe its my stubborn nature or my crazy Italian lineage, I come from some tough stock… or by the Grace of some power beyond me I am still here 7 months on from my terminal diagnosis.Today, my doctor refered to me as their miracle. I couldn’t stop smiling. I always say I don’t know how much time I have left, my doctor says who knows just keep doing what you are doing so that’s the plan. I have embraced my need for a wheel chair as I have 2 choices miss out or join in with wheels.

I have embraced needing help. Though this is hard, very very hard. When you desire your whole life to be in the role of carer. Being a special needs teacher, I genuinely loved my students and my profession. I loved my students and sat in awe of their families. They would thank me or tell me how much they Valued me  and I would brush it off. Why, because I loved what I did. I did it , its wasn’t always the easiest or the most glamorous but it was my passion and my heart was in it.  I devoted myself to what I did and took pride in it. But it was more then just my job. I also have been blessed to work with some amazing teachers and teaching assistants which made my job easier and who inspired me and helped me be who I was.  I know they say not to get attached to your students but you do and I remember every single young person and adult I had the pleasure to work with. I am saying all this becuase now in life I find myself on the other side.

Since carrying our gorgeous girls I have been at the mercy of others. Those amazing living on Earth angels that are in the medical profession have devoted their lives to taking care of others. I speak of all those in the medical field I have been so privileged to be cared for by. I am grateful for their choice of profession, sacrifice, kindness, their brains and their determination to keep me alive and not only to care about me physically but mentally and emotionally as well. I could sing their praises for days and I can not thank them enough. I write them notes and bring them in goodies, not unlike what I would do for my teaching assistants, come to think of it. Sidenote, I have been blessed by so many teaching assistants who helped me look good and love what I did. Who supported me and helped me be the best  teacher that I could be. Anyway, being on the other side is humbling. I hope they realise how much I value and appreciate them. As with all those in our life who support us. Who help us be the Plumb-Bilottas. Who enable us and encourage us and support us to be the family we are. We would be lost without your support and love. My eyes and heart are open and the joys that fill our lives becuase of all of you out there is mind blowing. Wow, I have gotten really off track….

The girls came with us to the hospital today. This is rare as I normally get a taxi to and from the Royal and go on my own. However, I hoped I wouldn’t be there long but clinic was very busy, just one of those things. The girls were amazing and loved going on mini adventures while we waited about 3 hours. We even created a Plumb-Bilotta all in cheer. haha sorry for those waiting who were hoping for some piece and quiet. Instead you got 2, 3 year olds singing and dancing, colouring and chatting ( no idea where they get that from). Then, I needed a chest x-ray, so they headed on an adventure to get my antibiotics as Ive been prescribed another 2 weeks for this infection. Then we headed up to daycare for my blood test. Going to daycare in a weird way, is like going home for me. Anyway, they entertained all in there by being their amazing little selves. Dancing to the music and colouring and chatting away without a care in the world.

Side note again, I made my recipe book for friends and family with a lot of help from ,my amazing sister through friendship Tricia and Sarah who scanned my hand written recipes in and helped me create my book. ,  Anyway when I got them printed there was an error so they were reprinted free of charge. I have collected donations with the reprinted ones in daycare for £5 each to raise money for the Bloom Appeal. I have run out, but the bloom appeal and daycare are looking at cheaper ways to print more to raise more money as 45 copies have already been taken, which has raised £225 for the bloom appeal. Any ideas with this would be greatly recieved. Since cooking is a passion of mine it also is a way to share another legacy. It was so amazing to hear fro some of the  nurses saying I made your…… and it was amazing. I am quite proud of that. It’s kinda my way to take care of others with my cooking, which if you are my friend or family know is my great joy and love.

Then, I got the news my blood levels are all back to normal. My superhero bone donor ninja cells are still kicking butt. I have no idea how or why but they are and someday I hope to get the chance to thank my donor in person. I wrote him a letter last week and wait very anxiously to hear back. I say letter it was more a 7 page novel but how do you express all your gratitude to someone who has literally given you time. I wanted him to know that his gift and sacrifice was a gift worth giving and that without him I wouldn’t be here. I have a watch engraved with’ Thank you for the gift of time’ I hope to be able to give him someday. It’s the least I can do.  I will never repay the gift he has given me not once but twice.

Then tonight, the girls were on form and Emma told me I was the best Momma in the world and Lily kept running her fingers through my hair and kissing me. They thanked my nurses for taking care of me. I felt such love and pride. They are truly amazing. Then to top it off we relocated our caterpillars now in cocoons to their butterfly house. Seeing them watch was magical. I can’t explain the joy I get from teaching them through books and experience. Its like using all of my 4 and a half years of uni put into the 2 most important little people in my life. We read the hungry catipillair tonight and monkey puzzle and their ability to remember and their vocabulary amazes me. Tonight we talked about animals hatched from eggs, delivered alive and ones like catipilliars that don’t look like their mummy or daddy or  momma. We talked about different families and just loved each other. I don’t mean to gush but these simple little moments like bed time and just being together fill me with pure joy. I am, Mand and I, are beyond blessed. Not a moment goes by I don’t realise this. Anyway its late and I have rambled enough…. so for now just go tell someone how much you love them, value them, cherish them, breathe in the life you have and the gift of waking up  and being alive. Above all just keep swimming… much love San xx

 

 

 

Gratitude looking for a positive……. Paying it forward Challenge

First, as always I’ll update you on my health… Well I’m still here the antibiotics for my chest infection are working but I still struggle catching my breath and laughing still sends me needing my inhaler. However, I feel it’s getting better slowly I have another week on antibiotics so fingers crossed. My mobility is what it is and my weakened chest doesn’t help. At 34, I despise stairs. Seriously what is the need haha

Anyway, as for my blog post…. After chatting lots with friends I feel I need to gain Ellen’s attention once again. I want to do another video to remind her and her producers that I’m still here, still swimming, still waiting to hear of any more news about skyping my idol, Ellen Degeneres. 

Talking about her then brought me onto a new mission or challenge…  using the power of positive thinking to take over social media. I see all these spouse challenges or parent challenges which are great but what if you don’t fit into that category. But sharing a positive about your day can and I’m sure does happen to everyone if you look. It could be huge…. Winning the lottery…. To mundane…. Getting a shower this morning to getting a good hug to ….making someone smile. Seeing an amazing sun set or a shooting star. Being grateful for life and positive I personally think is beyond the best medicine. I think when you start to look for positives rather then negatives you will be surprised how much good there is in your life even in the most dismal circumstances. It’s a choice you have to make, a way of life. Don’t get me wrong life is tough, bad things very bad things happen the challenge is to find something anything just one thing that was good or positive. I think if you throw good vibes and positive energy out there that energy will come back to you. I understand not everyone will agree with me…. But when you live like your dying…. Which by the way for me isn’t like the Tim McGraw song as when your body is slowly deteriorating traveling the world or climbing a mountain is not fesible. However, being inspired to share what you are learning about the true meaning of life, the true value of family and friends, of giving love and being loved and of pure kindness and acceptance is the foundation of life. 

I suppose this leads me to the second part of my challenge…. Paying a good deed forward. I’m not suggesting this needs to be advertised. Actually none of my challenges need to be advertised though sometimes sharing reminds others but anyway….. Your good deed can be as simple as taking in your neighbors bin, smiling at a stranger, helping out or  then huge like I don’t know whatever you can do but if we all did something small for someone else imagine the ripple effect we could create. You could help me leave an even bigger legacy.  I have been humbled by the amount of generosity shown to myself and family from those close to us as well as complete strangers. It is beyond humbling and was very hard to accept at first especially as I would much prefer to be a giver but I have learned there are still ways we can help. Also teaching my girls to have a grateful heart is a huge value in our lives. We are truly blessed and sharing our blessings in any way we can is very important. 

So this brings me back to Ellen Degeneres and everything she stands for positivity, celebrating the human spirit of persurvence, being kind to one another and helping those around us.  To being the best human being we can be. Every night I tell my girls….. They are the best Emma Rose….. lily Grace in the whole wide world. That they are kind, clever beautiful strong and brave and how much I love them. I thank them for being them. Their chests puff out and you can see their self esteem grow. As a parent I feel that is an important job I can do. The world can be a scary, tough, hard place my job is to be their number one cheerleader. Sorry I get off topic…..

Basically I challenge you the vital members of team Sandra…. My just keep swimming cheerleaders…. My positive vibes and endless supporters…… To think of something positive that has happened to you that day something good and send that energy into the universe…. Then during your day look at a simple way to pay a kind act forward….. This may not be possible everyday but I strongly believe the more you look the more opportunities you will find….. I do believe in miracles and the fact I’m still here is to me proof miracles happen I think the miracle of time is happening to me for however long because of the positive energy I am surrounded by and that is sent our way….. No matter when my time is up I still believe a miracle has occurred in my life and I am beyond grateful which is why I thought of this challenge as a way to share the positive energy I’ve been sent to others. I’m not perfect in fact I’m far from it…. I’m just a momma  a 34 year old woman facing her own mortality and hoping that at some point  in my short life I made a difference…..  Thank you for reading and helping me accomplish this…… 

My gratitude thought for today was the ability to take my girls to see Gruffalo’s child and experience a live show with them for the first time to have Emma on my lap and be alive for it. My paying it forward was sending out messages of strength and love to a few people that I felt compelled to share with. That was today who knows what tomorrow will bring…. So the question is do you accept……. Just swimming…… 

It’s a great day to be alive

I’ve been thinking about what I wanted to write about next… The other day driving home from a great peaceful chilled day at the zoo I thought of the song it’s a great day to be alive and you know what no matter what it is… becuase the alternative doesnt bear thinking about….

I will give my medical update…First, I have no idea about my blood levels. I was tested today for the first time in a month the longest I have ever gone in 3 years. When I left the hospital today after about 9 hours of being there,  my results weren’t back yet. I realised though it doesn’t matter in the grand scheme of things. Its a number I feel okay so for now we will go with that. I have a nasty chest infection but am on antibiotics so fingers crossed it clears without me needing IV antibiotics. That is a fear that I do hold but so far no fever. I wheeze but I suppose I don’t do  much physical activity so I don’t notice it so much. Though don’t make me laugh too much or that can send me into a coughing frenzy….  I have an inhaler and was told to use it more.

Going to the hospital once a month has made a huge difference to our family time for the best. We realised my limit is a few hours out and about and that I really struggle when I cant rest my feet off the ground. My eye sight isn’t great in bright lights but it could be a lot worse. This is most likely a result of the steriods but the benefits of the steriods out weigh the negatives at this point.

We have created an adapated family fun list. Though we don’t want to call it a bucket list as that means when its done I’m done or if we don’t do something then we ran out of time. Instead its a list of accessible activities we could do. So any ideas are more then welcome. We really need some creative ways to do an indoor camping experience as that is a real passion of Mand’s and mine that I would love to share with the girls. I have to see them eat their first smore  and cook a hot dog though I can’t be near a bbq or open fire due to smoke. We will sort it though.  We also love vouchers and deals so that leads our activities as well. I have realised I can be in the car for about an hour before my leg pain begins. We make everything an adventure. Everything gets hyped up from the mundane of Bramble getting his fur trimmed to going to the zoo. We make I spy lists or lists of what they want to see. They get so excited planning the day and love family date days.  The girls love when we name the activites. We realise how blessed we are to make these memories and have these experiences. Lily and Emma are at such an inquistive age and seeing the exciting to the mundane through the eyes is a true gift. We tend to stay put on weekends as I have no immune system and it gives me some needed sofa time and the girls time to just be. We have dance classes on Monday well Lily and Emma do. It is such a joy to watch. On a Wednesday I am at my creative therapy group. So we try to plan activites around these allowing me time for rest and recovery. So for those worried I am doing to much I have finally embraced my limitations and found a way to celebrate rather then be frustrated. I have learned to embrace my wheelchair and accept that by going in it and being pushed we can do more. Depending on what we do we need an extra pair of hands to help with the girls but thankfully we have a lot of people willing to join our adventures and the girls are really good. We are truly blessed to spend so much time togther as a family and with those we love…. we do not take it for granted.

I do want to reach out to Ellen again and say just so you know I’m still here…. still going …. so please don’t forget about me. Though if I don’t skype her or hear from her I am still so beyond amazed at what I have been able to accomplish from such a silly dream. It really spurred me on in a way I didn’t think possible. That said I still want a chance to fully thank her for the hope she has provided me. We just saw Finding Dory and once again feel in love with the underlying themes…. just keep swimming…. that family is beyond just blood but those who love you and care about you…. and you will never be forgotten. What a wonderful world was in the film and the girls call that our family song and the garden song as I have been singing it to them since they were born.

A friend asked me when I am 100 and no lonnger here can they still post selfies with my big head and take me on adventures. I said yes please. I want to see it all and its a way for my girls to see that life continues after someone you love dies…. and that life is still meant to be embraced, enjoyed and lived. So I’m thinking it could be like a Flat Sandra instead of flat Stanley or a where is the world is Sandra Bilotta instead of where in the world is Carmen Sandigo. The girls will have their little pots of glitter to spread so Momma will be able to see as she is soaring above the clouds. But I am giving permission to keep my memeory alive and bring me along in anyway you want  or see fit….. whether in your heart or….. even  my head on a stick. I think the idea is awesome.

So what is next…. who knows I had a full dairy for August and then looked at September and there was nothing…. I had a good cry becuase it felt like that meant my life was over… then I gave myself a pep talk and we started making plans.Yes they may not happen but what harm does it do to plan ahead. I guess underlying everything is the anxiety and I suppose fear that at any moment my body could tell me enough is enough. I try so hard not to think about this fact but I suppose that is my reality. However, I hide it well I smile and cherish and plan. I even have a resturant list as I love my food what can I say.

So September is getting full and that makes me content. So I suppose I have again a new lease on life… I realise the steriods are a huge help but I’d like to think my super heros nija cells are doing their best to beat  the luekemia cells kinda like pacman. I also think all the people family, friends, friends of friends, strangers and people in general sending me positive vibes, prayers, thoughts of love makes a huge difference. I am humbled by the amount of people who care. If you all realised how low of a self esteem I had before and how low  I felt people thought of me you would be shocked. I am still amazed at the comments I recieve and often wonder who people are speaking of when they speak of me.

Please know to me Im me… dealing with what I have been dealt as best I can. I put it down to my upbringing and am beyond thankful for the way I was raised and taught how to deal with life. I have had amazing role models and am blessed to say though I may have had a low self image it had nothing to do with the fan club I grew up around. My parents are  my biggest fans… I like to envision my dad telling everyone thats my daughter as he watches me live my life from above. My mom is my biggest fan and does tell everyone thats my daughter slightly obnxious but I have taken her example and do the same with our girls and they beam with pride. Also,  being the youngest I had a huge amout of love and support from a crazy, loving functional ….dysfunctional family and friends.  I cant express in words what you all mean to me and how your thoughts touch my heart. I feel surrounded by love and supported in a way I never knew.

All I can say is don’t hold back if you love someone tell them…. appreciate who is in your life. People come into our lives for various reasons and we may never know why but there is a reason and a purpose. Communicate, Share, embrace, hug, love, live… and most importantly always always just keep swimming…. that makes you a surviour no matter the outcome…. that makes you a fighter…. that makes you be alive….. Believe in hope no matter how dark the outlook…. this is what I want for my girls…. and to realise how loved and phenomial or as the girls say phenominis they are… and as are all of you…. until next time… just keep swimming