Saturday, 19 December 2015

I haven't felt this scared in a while. I'm not sure if it's just that Jaydens next MRI is around the corner or that I woke this morning reading of two other children with Jaydens condition recently relapse after four years in remission, or that a friends child has also recently relapsed. it's know doubt, all of the above. I'm really terrified.
I wanted to be writing about Jaydens graduation ceremony at kindy the other day and how exciting it was, how proud I was, and how emotional I felt. I wanted to have the feelings of hope inside, that one day I would see him graduate from high school and then maybe Uni or whatever path he chose. But instead I feel empty. Scared. Really fearful of the future and the sense of needing to grasp hold of every second with him and not let any of it go, is overwhelming.

I spent today with him. We went to the river first and collected shells so that he could complete the border he is doing around the flower garden we planted together out the front of our house. We walked along the sand picking the ones he liked best and I watched him, soaked him in, quietly praying inside that he will be ok. Constantly hoping, wishing, praying.
We then went to a coffee shop and had a milkshake and snack. All the while I just soaked every second, all the while fearing about the future and all the while trying not to think about it. A constant battle going on in my mind.

I watched him tonight as he slept and I felt the tears well up in my eyes. I'm trying. Trying to live in the moment. Trying to stay positive and hopeful but some days feeling succumbed to the fear.

At his graduation the other day the teacher told us what each child wanted to be when they grew up and what they wanted Santa to bring them for Christmas this year, as she presented them with their certificates. Jayden wants to be a builder and build houses, she said. I was so proud but so sad. So worried and so fearful that he won't get to be the builder he hopes to be. He wants a forklift from Santa "one that works", she said. that made me smile. His dreams and wishes are big. I stood there hoping and praying he will fulfil his dreams. I looked at all the other parents and envied their feelings. Knowing they are like I was, at Lukes kindy graduation and Layla's, then, not having the fear, the worry, the sadness but instead seeing my child grow and looking forward to the future with them. Instead I'm standing there at Jaydens, hoping and praying That one day he will have that future, that he will be that builder and drive that forklift. But also knowing, and trying to fight off that knowing. Trying to shake that low odds, that slim possibility, and trying to focus on him being that slim chance. With every inch of my being I want that. Trying to focus on the now, the moment, enjoy that moment and wish for many more years of beautiful moments.

Christmas is around the corner and every morning Jayden wakes with excitement to move the felt candy cane in our advent calendar into the day's pocket and retrieve the treat in it. He counts the days and his face lights up as he realises how much closer we are getting until Santa visits. This is such a beautiful time of the year. But I can't help but feel torn between emotions. Happiness to be blessed to be spending it with all my children but fear of the next Christmas. That constant battle in my mind.

He's asleep. So should I be. Hoping and praying that we get so many, many more Christmases together as a family, what I wouldn't give for that.



Big smiles at the coffee shop with mum


Deep in thought.


Kindy graduation


Hanging out with his mate


Love this smile. :)


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Tuesday, 8 December 2015

Again, It's been so long since I last wrote and that Is probably a good thing. It doesn't mean I haven't needed to vent but rather I've found other ways to cope.

A lot has happened and a lot hasn't changed. I still worry incredibly about any changes with Jayden and anything and everything concerning Jayden. I've learnt to try and not stay in those moments of thought for long as they can be so overwhelming and I try to push them to the back of my mind if I can. It's That sick feeling in my stomach and overwhelming sadness that can so easily engulf me. I've learnt to manage it to some degree. Some days are easier then others but some days are very difficult.
Certain things will take me back to those moments of utter despair and an overwhelming feeling of sadness engulfs me. To be completely blunt, it's scares the shit out of me.

Today for example, Jayden came in to see me in the kitchen holding his head crying. He was so upset he couldn't get his words out and I very nearly fell to my knees. The fear engulfed me and the sadness drowned my every thought. It all came rushing in as it always does and it's not until he tells me what happens that I feel it all slowly drift away from me, but still linger in the background, ready to pounce on me again. He had knocked his head on the door in our room and a big cuddle was all he needed. His little face, with tears in his eyes, crushed me. So many memories....sad thoughts....fears.

The moment left me feeling vulnerable and scared. Those moments always do. The thoughts that linger swirl around in my head and as I go about the rest of the evening I feel like they are knocking at a backdoor in my mind. Once everyone is in bed, I find it difficult to sleep and now as everyone else is dreaming I'm awake worrying.

It's also coming up MRI time and the anxiety is definitely ramping up. Every movement, word, look from Jayden I know I'm analysing. Constantly worrying.

He went back to school this term. So did Luke and they are both very happy there. The reason I did homeschooling ended up being the reason I also stopped. For my boys. Towards the end of our second term of homeschooling they both expressed their wants to return to school and have friends. They had met the local kids in our new neighbor hood and made friends and wanted to be at school with them. It was hard for me to recognise this for Jayden and to accept that this may be the best thing for him. The school was great though and like previous schools we have been to, were very understanding.
In the beginning I stayed with Jayden but it really wasn't long before he made friends and was happy for me to leave. He has made one special friend in particular whom adores him and they are very happy together. It made me feel so good to see him develop that friendship and for him to feel "normal".

He now looks forward to school and I look forward to hearing about his day.

We also have a new edition to the family and that is a little kitten. Like all our animals it adores Jayden and is often amongst his Lego with him as he plays.



I find myself spending a lot of time staying busy. The more I move the more I leave less time to think. At least that's what I try and convince myself. When I do this though I then find myself feeling guilty because I didn't stop and play Lego with Jayden with him when he asked. Or I feel guilty because I didn't take him somewhere new today to give him a new experience. Then I have to bring myself back to the moment and remind myself how happy he is in the moment. He's so happy no matter what he does. But I still can't help but feel I should be doing more.

He's so excited about Christmas. About finding the elf on the shelf every morning, moving the felt candy cane in our calendar to show how much closer it is until Christmas Day and today he got to see Santa.

My awesome friend who I adore organised her husband to come over in the big red suit and hand out a gift for each of the kids to put under the tree. Jayden was so happy. All the kids were. Nothing makes me smile more than seeing my children smile.


Our house is also decorated with lights once again and Jayden is over the moon about that. We go out the front almost every night to admire them and it gives me so much joy to see him so excited about them.

We also recently went away for a couple of nights which the kids loved. Our traditional early Christmas celebrations with my dads side of the family at a place south of Perth. The kids look forward to it every year, Santa visits and they get to spend time in a pool all day. It was really nice. I found myself just wanting to be with my kids though. I didn't get to spend a lot of time with everyone else and it was really nice to spend it with my kids instead. Now that they are a little older they spend so much time on their screens that I miss them. Technology is just so very different from when I was young and I wish it weren't. it was really nice not to have it there and to just be together.








It's late and I'm now ready to sleep. And the kitten has awoken and now making it almost impossible for me to write.

Hoping and praying this time of year will be something I get to experience with all my children for a very very long time to come.


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Sunday, 1 November 2015

"A flower!"

So often I've written an entry into this blog and haven't completed it and therefore it never got posted but this one I'm determined to post.
Lots has happened since I last wrote and I'm not sure where to begin so instead of doing that, I'm just going to write about a moment that happened today that I don't want to ever forget. It's one of many moments that truly captures Jaydens beautiful personality.

Today, We decided to go down to the river and have lunch at a cafe near there and then play at the park. We opted to walk and the boys scooted so it was also a bit of exercise for us all.
After lunch at the cafe we walked back and stopped at the park so that Luke, Jayden and danny could play a bit of football. Luke and Jayden are very different athletically, a lot to do with what Jayden has had to go through and also quite a bit of my athletic genes, which is zero. Luke can kick a football well and has done since he was three. Jayden on the other hand wants to, has the determination to but not quite managed it yet. And he doesn't care. I'm certain he only tries because it means doing something with his brother but deep down footy just isn't his thing, So today the three of them were kicking the ball to each other like boys do, then on his turn, Jayden picked the ball up ready to kick it when he suddenly saw a yellow flower on the ground in front of him. He shouted," oh look! A flower!". With that, he dropped the ball, bent down and picked it, then rushed it over to give to me where I was sitting watching. "That's for you mum", he says. I could here danny mumble "hope you don't do that on the footy field", with which we all laughed. We just know, this is Jayden. Beautiful sweet Jayden who would much rather pick flowers than kick a ball. Love my little man so much.




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Thursday, 10 September 2015

It's ok!

Jayden did so well today at his MRI! We are so proud of him that he braved it without a GA. He laid still for the entire duration apart from a few moments of being able to wiggle his feet. He even remained still while they inserted a catheter to do a contrast and to draw blood for tests. He was absolutely amazing and I'm overwhelmingly proud. I was with him the whole time holding his leg so he knew I was there.
I tried to relax but I think I was way more nervous than him and certainly majorly stressed about the results.

When he finally finished and was given an icy pole for his efforts we walked out the room to be met by the loud clapping of hands and cheering of Jaydens name by the anaesthetist and nurses that jayden would have had to look after him had he not been able to lay still for the MRI.
He was completely overwhelmed and had no idea what all the fuss was about. We then walked out into the waiting room to more cheers from danny, Layla and Luke. Awesome effort by our awesome little man. And a further well done from another anaesthetist when we walked out by which stage jayden was getting the gist that he just did a really big thing and was feeling very proud of himself.

We then all left and decided to go to kings park which was just wonderful. So nice to be together and so nice to have jayden happy and not miserable from a GA.





























And the best news ever is that the MRI results appear be ok! We still have to wait for final report but what we know now is it looks ok!
Absolutely unbelievably relieved to hear that.

Monday, 3 August 2015

We received the letter in the mail yesterday. The one that informs us when Jaydens next MRI is. Whenever I see those envelopes I know where they're from. I know what it's about. before I open it I can feel the anxiety inside me flow in like a creeping wave. My heart hurts. The mood I had initially when going to the mailbox to check for mail instantly changes. I'm no longer thinking about what's in the mailbox and now stressing about the impending MRI.

My little man is unwell at the moment and I'm grateful that it appears to just be a cold but it's not the cold I'm worrying about. I watch him closer than ever and feel the fear of the future encompass me again. Sometimes there's moments where I can forget and live in a place of denial for a short time but then the reality kicks in. This letter jolts me back there in an instant. The not knowing, the what ifs, the fear of the future. All of it encompasses me once again.

I laid awake watching him sleep last night. Hoping, praying and wishing with all my might that everything will be ok. I love him so very much. All my kids. My heart aches with fear.

I read about another child diagnosed with ATRT and the mother has contacted me. It breaks my heart. Another family entering this world and I know she is one of hundreds that have also joined her. I hope that I can bring her comfort but I know from my own experience that true comfort in this journey can only be gained from knowing your child will forever be ok and no one can tell us that, not ever.

Hoping and praying that one day a cure will be found and cancer will be a distant memory or should I say distant nightmare, in all our lives and we can all live with the peace of knowing our children, will be ok.



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Tuesday, 28 July 2015

Jayden and the kids have settled in so well at where we have moved to. They've befriended the neighbours children and Jayden is now truly in his element. An amazing bunch of awesome kids that Jayden and his siblings now call friends, its so awesome to see. I am so very happy to see them all so happy.
Jayden is particularly fond of the girls and is in his element in their company. They are all older than him but they are all so beautiful and kind to him. I'm so happy we have moved into such an awesome street with wonderful neighbours. We do miss our old neighbours but it's so nice that we have also gained new ones.

Homeschooling is going ok as we begin our second term. The moderator from the education department visits tomorrow and I'm not exactly prepared but I'm confident we are doing ok given the moving of house and being complete novices.

We moved into a house almost half the size of my dads and half the block size but I really love that it's small. No matter where I am in it I know where the kids are and they know where I am. Jayden can play anywhere in the house and I'm still close to him and that's awesome. He seems so much more content and happy as well and I think it's for the same reason as me, We are close all the time. It's also a lot easier to clean, yah for small homes.

Our animals have all settled in ok too. The dogs were a little stressed at first, especially our old blind dog Larry but now he is settled and much happier. Chickens, rabbits and guinea pigs are coping well too and getting use to having the dogs much closer to them now as before they were separated. And they now have plenty of kids giving them lots of attention.

So all in all the move has been good. As stressful as it became at times we always knew it was going to be ok as long as we are all together. And it has been.

There is a very sad part to it all and that is, the prospect of losing our beautiful neighbours. Their homes may be taken from them for the proposed freight link. We are all devastated by this. Firstly I truly can't believe that the government can do that and secondly it will split in two a truly beautiful little community we have all established. Most of these children have grown up together and now that we are a part of it too I really want my children growing up with these beautiful kids too.
The frustrating bit is the feeling of helplessness to do anything. I wish I could stop it but I get the sense that the government has already made a decision on this and it's not going to back down.

the bit that annoys me the most is the politicians whom are making these decisions inability to put themselves in the families shoes that will lose their home. Yes they will be compensated but they lose their beautiful community, and the kids friendships, all of which they have worked hard to establish. You can't compensate for that. If it were one of the politicians homes that were there we all know that this wouldn't be happening. Like everything, if they aren't affected by it directly, it seems they don't really care. Because if they were, things would be very different.


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Friday, 17 July 2015

The last few post I've written were about my restlessness from sharing Jaydens story with the media on behalf of The Children's Cancer Institute. I worried it wasn't portrayed the way I had hoped and figures were incorrectly stated. I stressed about the headlines, the angle of the story and worried it wasn't giving the children's cancer institute the exposure it deserved. And most of all I worried about jayden.

I got an email today from the children's Cancer Institute that read "by sharing your story so selflessly, you helped us generate $52,827 worth of media coverage (traditional and social) that has reached an audience of 355,108 people!!
This is of course is in addition to the funds raised through the tax appeal, which has raised up to $353,610. "

The tax appeal is on the following link
http://ccia.org.au/home/all-stories/jaydens-


When I read this i was so pleased. It made me feel like it was all worth it. No matter how difficult it felt at times and the vulnerability we felt afterwards after opening ourselves up, I now know it was worth it. This money and awareness will mean a lot to other families who enter this world of childhood cancer and that feels good to have helped that happen. I'm so proud of my little man and my family. They are truly my rock. Love them all so very much.







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Wednesday, 15 July 2015

I can't sleep. Thinking about everything. Jayden.
Another newspaper printed a story about him and yet again it did not go as I hoped. They quoted figures in the article of a survival rate of ATRT now being 70%. I was furious as I know that not to be true and it down plays the seriousness of Jaydens condition and every other child that is diagnosed with this disease.
And why give figures! It's shit that's all that needs to be said. Childhood Cancer is shit and we need to desperately do something about it. Stop building stupid foot bridges or freight links that will also be our front yard and Stop wasting money on crap. Instead, put it into the research of childhood cancer for goodness sake.

OMG I feel so cross that I put myself and my family out there because I want people to get how crap this is and hope that the damn government would help a whole lot more but the media have to put their own spin on it to sell the news and it's just not right.

I wish I could right the story myself and put it on the front page in big print with the heading "childhood cancer is shit and we need to do something about it" full stop.

I know I'm probably ranting now and I'm certainly feeling a little crazy upset in the head. And I'm really wishing I never put myself out there. I have this awful feeling in my gut now that people will read it all the wrong way, judge my family and I, or have feelings about it all that aren't want I wanted. I don't know. I just feel incredibly vulnerable and exposed now. It was different when jayden was in treatment as we had one focus and one focus only and nothing around us mattered, certainly not what people thought. But now, I spend my days so full of anxiety and fear that this sort of stuff just adds to it. And I so want people to see the truth. To Read the truth and be told the truth.

I really do think I'm rambling now. I'm so overtired and I just need to sleep. Moving house, this, I think I just took on too much.

The whole experience with the media has taken me back to a place I've worked so hard to keep inside. I really feel like I'm struggling to keep it together. Like a balloon ready to burst into a billion little pieces. I keep trying to get on with everything but inside I don't feel like I'm keeping it together at all. I'm finding myself tossing and turning reliving procedures, the whole nightmare.
It just never ends. It really doesn't. No matter how far you travel in this journey it doesn't end. And I'm so damn scared. I'm so worried that all this "miracle talk", I can't explain it..... I'm just really worried. Always am.

I so wish they could discover a miracle drug that could guarantee the cure of Jaydens cancer and every other childhood cancer out there. I so wish That everyone I know who's child is fighting this disease get to feel the breath they would exhale which would be full of sheer relief and the breath they inhale from then on, be finally one of peace if someone discovered that miracle drug.
That's what I wanted the media to help with, that's what I want people to know and help us to achieve. To be able to exhale that breath of sheer relief and inhale the breath of peace. To see our kids grow old. That's all I want. That's all any parent wants. Their kids to grow old, be happy and have a full life. I so hope and pray for that.



Jayden with his dog at the park.

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Wednesday, 8 July 2015

"When I get big like you mum I'm going to buy a house and I'm going to find the warmest room in there and you can sleep there with me." That was what jayden said to me this morning when we were up. It was so cold this morning in our house and we were all trying to keep warm. But we later sorted that out as we all went out to the shops today and bought a little heater for the sitting room. Now it's the most popular spot in the house....in front of the heater.

We have finally moved with just a few things left that we are going back and forth to get. It's been huge. Didn't expect it to be so huge nor as stressful as it was. It took a toll emotionally as well which also took me by surprise. But looking back now it all makes sense and I was a bit naive to thinking everything would or should run smoothly.

I was definitely saddened by closing a huge chapter in my life and felt very teary about saying goodby to our family home. However like a beautiful friend of mine said "a new family will live there and make new memories and thats a good thing". She's right and we are aware that it is a family with four children under eight and that made me feel much better. The comfort of knowing our family home will now become someone else's family home. It will be loved and that's the most important thing I think.

I also got comfort in the thought that I believe this is what my mum would have wanted and that where ever we go she will be with us not there in the house.
................

Feeling a little flat tonight as I did an interview with a television show to help raise awareness for childhood cancer, in particular the children's cancer institute that is currently raising funds for personalised medicine in Australia for children diagnosed with cancer.

I'm very much an advocate for research and had hoped the exposure would help to get them the much needed funds they require. However the interview was not easy and definitely has taken its toll on me emotionally. It's very difficult to revisit a time that you spend most of your waking hours shutting out. It's difficult to be reminded and asked about your fears. And it's just hard to allow all those wounds to reopen.

The kids were great through it all and truly are my world. They are my beautiful little rascals and I love each and everyone of them so dearly.
I never watched the footage on TV. I couldn't, but danny did and said it was fine. I just hope it raised the awareness and funds needed.

I also felt uncomfortable about the newspaper heading in the paper this morning. They referred to jayden as a "miracle boy". It might sound weird to anyone else but when I saw the heading it made me incredibly nervous and feel extremely vulnerable. I can't explain it but I feel like if I let myself feel at all comfortable or relaxed about jaydens condition then it could all go very pear shaped. Like I need to be vigilant all the time and not feel "ok" about anything. So when I read this, i was like "no! Don't say things like that! It might all go to shit now that you've printed that!"
That probably sounds crazy and completely out there but that's how I felt.
Yes I'm so grateful he is with us, oh my goodness am I so happy about that. And yes I acknowledge that it is incredible that he is with us given his odds but I'm very aware that this could change in an instant and I don't want to be thinking everything is "ok". When in fact, the reality of childhood cancer is, its "not ok", not ever.

When jaydens an old man and he's visiting me in an old peoples home or as he says "will let me sleep in his warmest room of his home" then I will be saying "miracle boy" then I will relax and stop worrying about anything other than old age stuff. I so hope and pray I see that. More than anything in the world I hope for that.


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Saturday, 6 June 2015

I haven't written here in so long and now that I finally have the updates have changed everything slightly so it all even looks different to post in.

A lot has happened and the most significant and important is Jaydens MRI was clear. We haven't Yet seen the final report but hoping that it will be all ok.

Jayden was extremely brave going into this MRI and for the first time
he walked into the room instead of me carrying him to where the anaesthetist was waiting for him. He held my hand as we walked into the room and it wasn't until we got to the bed that he turned to me to be picked up and cuddled. I sat with him on the chair with him on my lap and they put the mask on his face and after a bit of a struggle he drifted off to sleep. He only struggled a little as I'm sure it still frightens him but he did well. it was probably the best one we have done yet.

It's difficult to say what's worse, him struggling or him getting use to something that he has had to consider as normal.
Of course though it's much better to not see him so stressed. And whether we like it or not, this is our normal.

I think it helped a lot that we also talked about it before bed the night before. He always asks to not go and pleads with me that he never has to go back. There's always lots of tears and Its so hard not to cry with him. In side my heart aches. But he was really brave the next day and I was so very proud of him as I know how hard it was for him to do that.

When he woke from the anaesthesia he was very upset. I imagine it will always be scarey for him to wake in a room full of strangers. But by the time I was allowed in and had him scooped up in my arms and given him a long awaited treat he was ok. He's always so keen to get the canular out of his arm and to get out of there. We all are.as always we all went in and all of us fasted with him. I'm so proud of my kids for doing this with him.

Shortly after we left and came home and after hearing the news that all was ok we were able to finally take a breath. The weeks leading up to this scan had been so very difficult.

A lot had happened and emotions were running very high. So high that I was not able to blog about it.
Sometimes it's just better for me to keep them in than let them out and those weeks was one of those times.

Right now I'm laying next to my little man and I'm unable to sleep.

Since I last wrote my dad has decided to sell his house which is the home we live in now. The only home my boys have known. And the home I've been in since I was 13. It's sad to know we have to move but I'm trying to focus on the change as being a good one. It will be very sad to say goodbye to all the wonderful memories and to my mums home. She loved this home and she died here. It will be a very emotional move in deed.

We will be moving into a much smaller house so the decisions to throw things out have been hard. In particular anything of Jaydens. Very hard.

With the recent clear scan though I'm anxious to get moving. I just want to be settled in our new place as soon as possible. But everything takes time and of course the house has to be sold first.

Tomorrow I'm up early to venture to our local flea market to sell some of our stuff. Hopefully make a bit of money to buy new stuff.

Jaydens sleeping soundly snuggled up to me and Luke is too. I love watching them sleeping and so peaceful. So very grateful for these moments.

Sadly the stress of moving has not made it possible for me to stop and truly enjoy my kids. I always seem to have something to pack or clean and at the end of the day I feel so guilty for not spending more time with them.

Homeschooling them has at least given me some time to be with them. Even though we are working we are together. I won't lie it hasn't been easy, getting them motivated has definitely been a challenge. But seeing them together hanging out everyday has truly been wonderful. Jayden absolutely idolises his brother. He wants to be like him so much and does everything Luke does. Lukes helps him heaps with his work and jayden just loves that.



Jaydens growing into a beautiful little boy, he loves his puppy and our other animals, he loves to chat and he's truly the most loving little boy. He wakes every morning with a smile and a super big cuddle for me which just brightens my morning big time. He's also even become quite cheeky which although can make me cross sometimes it also makes me so happy and appreciate that he's growing up and able to test the boundaries.

Difficult to get truly cross with him though as the guilt that follows is awful. I did today and felt terrible. Trying to move, get time to do stuff and then try to fit him in is difficult and when I don't I lay awake at night worried that I missed a day without making the most of my precious little man and my other kids. Those feelings are awful because you know you can't get those moments back and I can't help but worry about how many I will have.

Both the boys had birthdays since I last wrote also. Jayden turned five and Luke nine. So very very grateful for birthdays. I so hope and pray for many many more of those. They both had wonderful days and on each of their birthdays we did something special of their choice as a family. Jayden wanted to go to an indoor park which was great for the kids and Luke wanted to go go cart racing which they loved. Jayden and I didn't do the go cart racing it as he's too young but Luke, danny and Layla had a blast. Great birthdays.

I'm not wearing my glasses which I recently had prescribed so hopefully there is not too many errors in this entry. Yes, I'm getting old so now need glasses. And I know not to complain but rather to be grateful that I am getting old.
I only hope and pray that jayden and all my kids get that same privilege. Always hoping and praying for that.



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Monday, 4 May 2015

I Watched my little man today and he looked tired. Tired more than normal. Of course I'm
Always worrying and with his MRI coming up this Thursday I'm border line terrified. It truly never, ever gets easier. Never.

I look at his little face and I feel so much love for him. I love him so much I want to cry. Cry because I'm scared. So very terrified. So scared. Words are not enough to explain my love and my fear of losing my little man. I'm truly terrified. And everytime I look at him I hurt so bad inside, because I'm so scared for him.

Every MRI is terrifying. I feel like I can't breathe properly in the days leading up to them and my ability to function on a day to day basis becomes almost impossible. I exist within a grey cloud and find it difficult to focus on anything but the worry of the MRI.

Yes, I get up in the morning and get on with it all but it's all done on auto pilot. I often feel as if I'm this big balloon full of tears that is about to break open. That I am constantly holding it together for if it does break I will no longer have any control. The energy I use to keep it together is the energy in which I exist on and the only thing I have control of.

I wish I had control of all of this. The lack of control is terrifying.

My little man is so truly amazing and I love him beyond words, as I do all my kids.

Praying and hoping with all my might that his MRI will be all clear and he will be fine. And praying and hoping he will get to live the life he always talks about and dreams of. I so hope and pray for this.



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Friday, 24 April 2015

Home schooling

I look back on my entry's these past couple of months about jayden and kindy and I read how up and down I am. It stands out to me that some days are ok and others are just plain crap. And that's actually it. That is how it is. when jayden had his first day at kindy it was great. But by the third it was not, far from it. So I changed his kindy and at first it was great, then it wasn't. Both of us were trying to do something that's considered normal yet realising we aren't normal and to fit us into the normal mode just isn't going to work.

In fact this whole kindy thing has been way more difficult than I had anticipated and emotionally it has taken a very real toll. Both of us struggling to do something that is normal but our situation just isn't normal..

On top of this his brother seems to miss out entirely of anytime with me and I forever feel torn between the three and feeling as if none of them get as much of me as they deserve to or I of them.

So after much thought for sometime and particularly as the school holidays ended I realised I just couldn't keep going like this. So I did some investigation and sent a few emails off and come Monday the first day of school back I kept my boys home. Because I made the decision to home school them. Layla had the option too but she wanted to go back to school which I'm so proud of her and I'm also so happy to be able to give her options. Luke of course was wrapped he was not going back and jayden just loves being with Luke. It was a huge step to make and a little scarey but it just felt right and so I went with that feeling.

It's been a week now and it's going great. I can honestly say I feel as if a weight has been lifted off my shoulders.

In these past few days I've smiled more and laughed more than I can ever remember. Being with my boys and being their teacher and mum is truly the best job in the whole world. Loving this time!




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Thursday, 16 April 2015

It's Thursday evening and Jaydens asleep. He hasn't been well. Wednesday morning was the first sign things weren't right as I wrote in my last blog, but by lunchtime he seemed to turn a corner and all was well so he went with danny and the kids to see family.

But when they came home and danny was carrying him in his arms, asleep, I began To panic. A million unanswered questions rushing through my head....Why had he fallen asleep? What was wrong? He never falls asleep in the car anymore. What was making him so tired? I'm never thinking of simple answers to these questions like maybe he's just under the weather or just plain tired. No, I'm always thinking the most scariest scenario and It terrifies me.

We laid him on the couch and I sat with him watching him. He was awake by now but looking really pale. "My eyes hurt" he says. The panic begins to erupt inside me. I stroke his head," it's going to be ok, I love you". "I love you too" he's says. "My leg hurts mummy", more panic. I ask him if anything else does and he tells me everything hurts. All the while I'm trying to convince myself it's nothing major and when he tells me his whole body hurts I'm hoping it's just the flu. I also feel that he's warm and check his temperature, which thankfully turns out to be high. I catch myself in these thoughts and can't beleive how now I actually hope that my child has just a flu, because what I fear is far, far worse than the flu.

He didn't leave the couch until it was bedtime and we sat with him and had dinner with him in the lounge room. He didn't eat much but had a little bit of salad.

The next day which is today he seemed ok in the morning but congested so I rang the specialist who would be performing jaydens procedure tomorrow. Fortunately he agreed with me to postpone the procedure and he's booked in for late May. A little (maybe big) part of me was relieved to have it postponed. Nice to have just one less thing to worry about for now.

It's really late in the evening now and he's having a very restless sleep. He's just woken and saying he's cold and his temperAture is really low. Again I'm getting myself caught up in worse case scenarios because worse case scenarios is what I know now. I can't sleep worrying about him, and am so concerned.


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Wednesday 15th April

Images and memories of Jaydens treatment will always haunt me. Especially At times when I'm on my own in my headspace. In bed at night, taking a shower, vacuuming, washing the dishes, the times my head isn't busy. The images appear. Today whilst showering a flash of jayden after he had yet another procedure. Danny and I going into the recovery room and seeing him laying in a hospital cot crying, so frightened. His face all blown up from the excess fluids. His little face all wet covered in tears. Oh my god, the sadness and gut wrenching hurt I felt for him. And my urgency to hold him and take him out of there. to stop everything that was happening to him.What I wouldn't have done to change everything for him.
The images and memories ramp up as the next MRI approaches and the fear is overwhelming.

His procedure this Friday is really worrying me as well. The thought of putting him through something else hurts so bad. I know if it were Luke or Layla I would be worried too and nervous but with Jayden it's far more than that. It's wanting so desperately to protect him from anymore hurt in his life, it's the rehashing of all the hospital experiences we have had with him and the fear and anxiety that comes with that. It's like having a burn and whenever that scar goes near heat again it hurts.

I'm so worried about it all. He's unwell today which has amped my concerns up even more. Nothing specific but just wanting to be laying on the couch and me to be right near him. I know something is up. He has no temperature but I know something's wrong. And it's the not knowing of what exactly it is that's terrifying.

I just love my little man so much and I hate that I can't protect him from every thing. I so badly want him to be safe, always and forever. All my kids.


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Easter, new puppy and school holidays

Monday 13th April

It's the start of the second week of the school holidays and I so wish it were the first again.
Easter was really lovely, the kids were so excited. So nice to be all together. I will never stop being grateful for that.

When I set up the easter hunt I remembered the Easter jayden wasn't here but instead in hospital. Only one of us could stay and The other be home.
I remember the kids being excited but not one piece of me could be excited with them. It's those memories that are a constant reminder to be so grateful for today, and I so am.

Jayden has been well and happy. I'm always obsessed about his well being and stress so much when he's hurt or sick in any shape or form. If it's a normal boy thing like a simple fall or trip and graze on a knee or splinter in the finger, I'm worried but also grateful that he is able to do normal boy things. But if he's pushed by someone else or he's crying and I don't know why, I'm totally beside myself. I'm not even sure what I'm trying to explain exactly except that sometimes I know my emotional reaction to these things is intense. I wind up crying later in a room on my own because the experience hit such raw nerves of not being able to protect him, that keeping it together in the moment is so hard.

Feeling very fragile today. We have had an awesome start to the holidays and I'm so grateful for that. But I can't help but feel extremely emotional about jaydens upcoming procedure and most of all, his MRI. It truly never gets easier.

I'm not going to focus on those emotions though and instead post some photos of the wonderful time we've had together over the holidays, easter and our beautiful new edition to the family, jaydens little puppy he named "coco".

























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Thursday, 2 April 2015

Croup, kindy and circumcision.

It's Monday and Jayden is doing well. He didn't have a good week last week with croup but fortunately this week he is feeling much better.

Kindy has been ok but with a few setbacks ......
Two weeks ago he stayed home from kindy quite a bit as he wasn't happy. In fact kindy has been trickier than we originally anticipated.

In the beginning it wasn't too bad especially after we changed kindies. But then it turned, and one day when I went to drop him off his little face crumbled and pleaded for me to take him home with me. Of course I did. When he cries for something to stop I don't see a boy missing his mum but rather the little boy that lay in a hospital bed pleading for yet another procedure to stop. And in this instance, I can make it stop, so I did. We went home that day and just hung out together.

The following day we missed as well as he didn't want to go and I realised then that we needed to take a new approach. As much as I would love to keep him home always and any opportunity I have I do, but I also know how much playing with kids his own age makes him so happy.

So I went Back in to see a psychologist that is wonderful and sorted a plan to go with for what to do next. Fortunately the kindy is wonderfully supportive and is happy for me to stay. So now, everyday I go with him, stay, pop out for a coffee and come back and leave when he's ready. All this so that when we are both ready jayden can stay on his own. I have to say it's so difficult to let him go. I worry about him constantly and although he and I were both so brave in the beginning with kindy, when it came down to it, we both just crumbled. I know it's not just about him but also me. I don't have one single bit of emotional energy left to make him do anything he doesn't want to do. I just can't. It's impossible. So hopefully this method which we also used at happy campers will work as well at kindy for both of us.

Jayden and I are both enjoying kindy much more now. He is, knowing I'm not far away and I'm loving watching him happy and interacting with other children his own age. Really awesome to see.

He wasn't well last week with yet another bout of croup. Truly scary stuff. It's also so emotional for all of us. We all worry so much when jayden is unwell and none of us like to see him distressed. His brother was especially worried the night it started and sat up with me helping in anyway he could to help make jayden comfortable. Luke was really just beautiful. He loves his brother so much and jayden loves him back.



It's so hard to see Jayden distressed. When I'm holding him in my arms like I was the night his croup started and wishing the steroids we gave him would hurry up and kick in, he's crying and pleading with me to do something. It's times like these my heart truly breaks. I hurt inside so bad and I'm so scared. I know the croup will pass but my fear of the future is so overwhelming. I wish so much that I had a magic wand and use it to make sure he's never ever sick again. That he grows to be a healthy, happy adult. I so wish for that. More than anything. That all my children remain well and happy.




Jayden has yet another procedure planned in a fortnight. He has to be circumsized. We really didn't want to do this but we have got to a point where the positives by doing it far out way those reasons not to. And of course one of our main reasons not to is just not having to put him through another procedure. However we know it has to be done. So why is he being circumsized? Well, When he was going through treatment, part of his protocol was to have a catheter inserted into his penis at the beginning of each chemotherapy round. The reason for this was if he wees it will prevent the chemotherapy from burning his skin. All shocking. And he was so young at the time. Because he was so young his foreskin should have never been pulled back to insert the catheter but it was, which tore the skin and caused scarring. This happened each time and our specialist believes this is why he now has issues with his penis. The scarring has prevented the foreskin from opening properly and everytime he wees it blows up like a balloon. he only has a tiny gap where the wee can come out. I thought This would be ok with time however it can cause infections that can become serious.

I wanted to write about this so that if their are any parents out there that have little ones in treatment, make sure the medical staff know how to insert a catheter correctly in a small child. Their foreskin should never ever be forced back. I know there is already enough to worry about after treatment so you really don't want to add to that list. I wish we had of known that back then.

Anyway, it's nearly the end of the school term and I'm so happy to know my kids will be home everyday soon. Love the school holidays.









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It's now Thursday, last day of the term. Love the school holidays.

It's 1:30 in the morning so that means it's actually Friday. I can't sleep. Jayden woke me as he's sleeping very restlessly tonight and when he does, I find myself laying awake worrying why he's so restless. While I worry about him, visions of the past enter my head and before long I'm in an awful state of panic. So I'm up now in the kitchen finishing this blog in the hope that I can switch my mind off. Not likely, but by writing my thoughts down at least they are in some form, out.

We received the letter from PMH today letting us know when jaydens next MRI is. The gnawing feeling in my gut returns and I'm scared out of my wits once again. It's not that it stops it's just that I've become good at burying it within myself and this letter just made it all come rushing up.

Then tonight. Restless sleeping and I'm worried. It's So hard not to be scared. Wish I could sleep.

I'm going to finish this now as I need to try again for sleep.

Hoping and praying everything is ok with Jayden, and always will be. Love my little man.





Sunday, 1 March 2015

A quick update

It's Saturday morning and I'm sitting outside watching my little man playing in the sand which was once grass but over time the boys have turned it into their favourite play area. It's especially Jaydens favourite spot to be.




Jaydens doing well and I'm so very grateful for every day of that. He makes us smile and laugh and brings joy to our lives everyday.

I love being able to see him do normal things like playing in the dirt. I will never forget the times that I prayed he would be able to do those normal things that boys do again. Watching him so sad all those days, weeks and months in hospital sitting in a bed a not being able to play like other kids his age were doing. And knowing now that their are many kids doing that right now, sitting in hospital beds instead of playing like they should be. And also knowing many parents who no longer experience the joy of watching their kids play. I am so sad for everyone who is travelling this journey.

So I will never stop being grateful that Jayden is able to play now. That he is doing what kids his own age should be doing, and not spending it within the walls of a hospital room.

We recently went to pmh for our appointment with Jaydens oncologist, doctor Nick and as always we saw many new faces in the waiting room. It saddens me to know so many more families are being told those dreadful and shocking words "your child has cancer" truly crushing.

On this visit, for the first time Jayden did all the examination without sitting on my lap. He's clearly beginning to see this as normal for him, which is sad. He sat on the chair on his own as Dr Nick checked him over and then on the examination table. It is however, So nice to see him trusting again.

His results were all good with no change in his MRI from the last one. We will still send copies to Chicago as it means a lot to have a second opinion and to know there's others looking out for him. They were so wonderful to Jayden when we were there and continue to follow his progress and be of a huge support. We love them all dearly and always will.

So I'm sitting here now watching Jayden play with his trucks, talking to himself and getting extremely dirty. Love my little man. He's so precious to me. We are surrounded by chooks scratching, the rabbits stretching their legs for their morning run and guinea pigs grazing on our front lawn. We haven't had to mow it since we got them five years ago. So very grateful for this moment, and all the moments I have with my kids.

Since I last wrote a lot has happened. Firstly we changed jaydens kindy. He now goes to a different one a little further away than the one he was at but both he and I are much happier. I couldn't really put my finger on why exactly I didn't like the first other than to say neither him or I were completely happy about it. It's just so vital to me that the time he spends away from me he is happy. He's special, special to me and I want him to be cared for with the same feelings in mind. So now we found a kindy that is perfect for him and I'm so much happier to see him happier.

I worried about the decision to change at first as it's difficult for me to know if I'm acting on emotions and just being super sensitive as I'm not exactly operating at a normal level most of the time. Anxiety drives me mad and often blurs my thinking. But I'm glad in this instance it was more my gut talking than my anxiety. And I followed it.



Our chickens joining in with the play with Jayden. And jaydens awesome bed hair! Love this look in the morning.



Jayden picking up one of our chickens to put back in the pen. It's so cute to watch as he's so very gentle. He carries them slowly to the pen and when he puts them down he does so, so gently. They really trust him and never struggle when their in his arms. Just gorgeous to watch. He loves all our animals and I know they love him too. He's the same with people and his friends. The other day when I picked him up early from kindy he told me how worried he was for his friend who had to be there all day and he didn't think he would have anyone to play with. He then when on to ask me if he could spend the whole day there next time so his friend wasn't on his own. Beautiful big heart.




Other things that have happened are special moments with Jayden and my other kids. So many times I've thought I must write that moment down in my blog so I never forget but then I go to pick up my phone and realise by doing so I will miss another moment.
And I don't want to miss any.

I wish I could say life is getting back to normal and how it use to be but I know it never will be and this is the path we are now travelling as a family whether we like it or not. We will continue to hope everyday that this path continues to be travelled with us all together, and hope that we all remain in good health.
Everyday we know is a blessing and everyday we are grateful for.




Sunday
It's Sunday morning and I can hear my boys laughing outside as they play. Truly the best sound in the world is my children laughing. I look outside the window and see them playing in the sandpit under Jaydens make a wish cubby. He loves this cubby, all the kids do.




It's been a really lovely weekend so far and today we are off to dannys parents house for lunch. I'm so grateful for my awesome in laws. I know I'm very lucky to have such a supportive family.

Monday
It's a public holiday today so all my kids are home. Love days like this.
Love my kids.




Friday, 13 February 2015

Wednesday

I haven't written in this blog regularly for so long. I don't really know how I ever found the time before to write in it everyday. But I know it meant a lot to me to do that everyday, a means of managing.

Jayden has been good. His first day at kindy was great, the second, not so great so I picked him up early and same for the third. He hasn't been since as isn't due to go again until tomorrow.

He was very tired last week from his kindy days and I know it will take some getting use to for both of us. I really notice his absence from home when he's there and look forward to seeing his little smiling face when I pick him up.

We haven't been doing a lot lately which has been nice. Just hanging out at home.

Thursday

Only got a few moments yesterday to write what little I did and the same will be for today.
Jayden wasn't as happy as last week to go to kindy today however he went and there were no tears. He did ask if I pick him up early and of course I did. Really missed him. Feeling exceptionally vulnerable today and really needed his little smiling face around.

Today my cousin Was laid to rest. Very sad. Beautiful man.
Cancer sucks.

Friday

I thought I was doing ok but last night when I went to bed, in the silence of my home i crumbled. The passing of my cousin is yet another reminder of how fragile life is and losing someone so special is hard. I'm not his sister, nor his parent, or his wife or child so my grief is different. I feel very sad for those that were. For me it's a loss that not only breaks my heart but frightens me beyond words for my son.

When I went to bed last night I watched Jayden as he slept. Hugged him gently and kissed him on his head. I felt so helpless. Wishing I could make it a certain that he would be ok but knowing that it's out of my hands. Knowing all I have his hope. Hope that he will be ok. I so hope for that.



I Woke this morning feeling vulnerable. Jayden didn't want to go to kindy and I didn't send him. I couldn't. I feel so torn. A big part of me just wants to wrap him in my arms and never let him go but I know I should encourage him and help him to make these big steps to kindy. Finding it very hard today. after my cousins funeral I'm left feeling numb and scared. Scared of the future. Some days I'm able to shut the thoughts out but today just isn't one of those days.

Instead of kindy, Jayden and I spent the day together. Playing lego, watching playschool on TV and Jayden helped me with the chores around the house. It was just what I needed and I think he knew that. I Love my little man so much. I love All of my kids, so much.






Tuesday, 3 February 2015

First Day at Kindy



Today was Jayden's first day at kindy. A day I once never thought we would see. Yes it was fraught with emotions, but emotions that I was able to keep at bay because Jayden was ready. He was ready to go to school, ready to be with his peers and ready to be away from mum. I was so proud of him. 

When we entered the kindy gates I anticipated him getting a little nervous, however after hanging up his bag he went into the classroom with me and eagerly picked some blocks out to play with. I found myself a bundle of nerves but kept that all in for him and when the bell went for the parents to go he sat on the mat with the other children and I kissed him goodbye.


I left feeling nervous but not an emotional wreck. I believe my nerves were what most women experience during this time and that the process today went off as normal as it could be. Which made me think about whats the "right thing to do" when it comes to your kids. For Jayden and I the right thing was to hold him back last year and to find a three year old kindy that would support us in the process of us both being able to let go. "Happy Campers" in Mosman Park was that kindy. It nurtured our relationship and helped the letting go process run as smoothly as possible and contributed immensely to getting Jayden and I to where we are today. I can not recommend them enough. The wonderful lady Danielle that runs it is one of the most amazing people I have ever met and i love her dearly for everything she and her beautiful workers have done for Jayden.  

So for Jayden, starting a year later at kindy made so much sense and today was proof of that. Seeing him today comparing that to a year ago is huge. The time was right today for him and me but it wasn't this time last year. Yet according to the educators that's when he should have gone. Given everything we have gone through and as a parent if I was to give other parents advice it would be this       " always go with your gut, when it comes to your child. no one else knows them better than you as their parents.  And don't let anyone, no matter who they are, tell you any different.  When it comes to your child's development it is not a race. Never is it and it shouldn't be."

Im so glad we made the decisions we did with Jayden and I'm so extremely grateful that we are seeing this day. I hope so much, that we will see so many, many more days of him growing and developing in his own time, into the beautiful little boy, then bigger boy, then awesomely wonderful man, that I know he will become.



Monday, 2 February 2015

Kindy!!!!!



Jayden starts kindy on Wednesday and I have to say I'm very anxious about it. Jayden however is super excited and has been counting down the sleeps for the last few days. I'm trying to get my head around it and keep my anxiety at bay, jayden being happy about it has helped. And in some ways I think I'm keeping myself numb ready for the emotional wave after I drop him off. he's so happy about it. I really hope he has a wonderful time. So worried that he might not.

For pure selfish reasons I would love to keep him home but I know this is what's best for him and what he wants. I'm so proud of him for getting to this place. For having the strength. And I'm so very grateful.

he has made it very clear that he wants to be doing what his brother and sister are doing. He wants to grow up and be like them, to do what they do and experience everything they experience. I so wish I could guarantee that for him. I wish I could know he would follow in their footsteps and go through primary school then high school, meets girls, get married, havechildren and grow old. I hope and pray for that everyday. For all of my kids.

I know there's no certainty in life for any of us and I get that. But I wish I could make people understand that it's different when you've had a child who's had cancer. In fact I'm sure anyone who's experienced that or similar knows that the feelings of the uncertainty of life is different. I spoke with a lovely lady the other day whom recently lost her mother. She said to me " we all have uncertainty in our lives. We don't know what tomorrow brings but "known uncertainty is I'm sure, totally different and I feel for you". She nailed it in one sentence. Known uncertainty is different. My other two children or myself or my husband could get hit by a bus tomorrow or struck by lightning or some other tragic event but it doesn't keep me awake at night. I don't freak out everytime a bus drives by or constantly study the bus timetable so as to avoid one. . I don't lock myself in doors until there's absolutely no sign of a storm when it's comes and then pass in fear that lightning will strike me. Or avoid swimming at the beach for fear of been eaten by a large fish. And none of that keeps me awake at night.

I don't do any of that and I seriously doubt than anyone else does. Know uncertainty is not the same as uncertainty, nothing like it. It is instead a fear that is with you always. I lay awake at night worrying about the uncertainty in Jaydens future. I try to keep those thoughts at bay but they are always there. I wish it were different. I do. I always will.

It hurts the most when he talks with his brother and sister about when he grows old. I listen and hope and pray that he does and the fear creeps in and I find myself holding back tears.

My beautiful little man will have his first day of kindy on Wednesday and I'm so grateful for that and so very proud of him. I love him so very much, all my kids and I hope and pray I will see them all experience many, many more firsts. A lifetime of them.
I Really hope and pray for that.
















Tuesday, 20 January 2015

I got the phone call today about Jaydens MRI fasting times for his MRI this Thursday. It's an unscheduled one. I haven't blogged about it because I haven't been able to bring myself too. I've been trying to get my head around it all or should I say, trying not too. Trying to pretend it's not happening and if I don't talk about it maybe it will all be ok. Just go about my business and all the bad thoughts and scarey scenarios will disappear. Of course it's not that easy to pretend it's all fine and my levels of anxiety are at an all time high.

Just over a week ago Jayden woke in the morning and shortly after breakfast he vomited. I wouldn't worry if it was one of my other children but when it's Jayden it's sends my head into a tail spin. Vomiting in the morning was one of the things Jayden did when this all started.
I am terrified. Truly terrified.

The nurse on the phone told me he's on the list for 11:00am. She told me the fasting times and when to come in. When I put the phone down I felt numb. So scared that I couldn't feel. Now it's the evening and as exhausted as I am I can't sleep.

I lay in bed watching my little man sleep. So peaceful. His "soggy" doggy tucked under his arm and his little face so innocent. I just love him so very much, as I do all my kids. They are truly so precious.
My heart aches. I'm So scared.

Hoping and praying with all my might that everything is going to be ok. I so hope and pray for that. Please, please, please, make it all ok.

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Monday, 5 January 2015

Sleepless nights

Can't sleep. My mind is definitely my worst enemy. Constantly thinking. So tired.
Have had a very up and down couple of weeks. More downs than ups and I know it's because of Jayden's MRI. Normally it would be this month but now that we have gone to four monthly scans, it's not until February. But in the meantime I'm beside myself with worry and a big bursting bag of emotions.

It's not that I stop worrying in between and suddenly stress to the max when MRI month comes along it's just harder to keep it all at bay . Dad said to me today that I'm very good at covering it all up. And I am. I have to be . In order to be a good mum, partner and friend I have to keep it together. But it's these times that the cracks appear the most and I find myself losing my mind. Crying in the car on my own. Feeling extremely emotionally vulnerable a lot of the time. The slightest mention of everything and I'm trying my damnedest to keep the tears at bay.
I so need to sleep. That's not helping. Tired and stressed not a good combination.

Finding myself emailing oncologists overseas looking for some sort of reassurance, that I sadly know no one can give. But hoping and praying they will.
Not receiving any replies.

Jayden is happy. He has been his wonderful self. Awesome little man. Love him so much.
Watching him sleep. He's so perfect. Everything about him is so perfect.
I don't understand how this all began. I never will. It's so damn hard.
Love my little man so very much.



More than anything, I want to be able see this beautiful smile for a lifetime.



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