Monday, 30 September 2013

Sick, again

Jayden's really sick again. He had a restless night last night and high temp. He woke up happy this morning though and I was hoping he was going to be ok. But that changed as the morning went on.

We took the kids to the maritime museum first thing and he was fine in the beginning but as time went on I could see he wasn't himself. He no longer wanted to walk and instead have me carry him and when we took him to the shops afterwards he fell asleep in his pram and he never does that.

We got what we had to get as quick as we possibly could as all we wanted to do was get him home and into bed.

We got him home, His temp was high and he was miserable. I gave him some Panadol and he spent the next hour on the couch in and out of sleep. But once that Panadol kicked in he bounced back, god I love it when that happens.

He was ok for the rest of the afternoon but by bedtime he was fading. Really, really hate seeing him unwell. It truly hurts to see him sick. I spoke to danny about this and he agreed by saying " I know, it just doesn't seem fair". But we know, none of what Jayden has been through is fair. That word just doesn't come into it at all.

I'm tired, I'm worried, and I'm going to try to get to sleep. I'm going to go snuggle up to my little man and hope and pray this is just a simple virus again and will go away as quickly as it came.

Please let it be so.



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Saturday, 28 September 2013

Royal Show

The enormous amount of guilt I feel for such the littlest things when it comes to my kids, is huge. Especially with Jayden.
Yesterday while danny was at his course I decided to take the three of them to the Perth Royal Show, on my own. I was hoping it would be quiet as I headed out when the grand final was about to start. I couldn't have been more wrong. It was packed. Really packed.
I so wanted Jayden to experience the excitement and fun of it as I don't know if he will get another.

However it was so busy so he spent most of the time in the pram and no time having fun. In fact none of us did. He couldn't go on the rides as the cues were so long and there was only one of me (not very well planned). I'm not one for crowds and neither are my kids so the whole event was really quite stressful. After an hour or so Jayden understandably lost his cool and talking him through his tantrum was difficult when all I wanted to do was make him happy. It truly broke my heart.

I really wanted him to have a memorable day but the only thing memorable about it was how stressful it was. We spent the whole time trying to avoid the crowds so he could get out of his pram for a bit of a run around but everywhere the kids wanted to go was mayhem. Honestly wish I had of stayed home.

He was so unhappy about leaving when we finally did and a huge tantrum to get in the car topped the shocking decision to go in the first place.

Today is Sunday and I'm still feeling crap for not being able to fulfil my little boys excitement about going to the show. Honestly, guilt is an awful feeling.
It's no doubt made worse after watching a video from utube of another family who's child was diagnosed with ATRT and after years of fighting it, sadly passed away. Shocking reminders that we may only have a certain amount of time with Jayden and how long, we will never know. So the need to cram everything in to his life is so great its overwhelming and the task to do it seeming almost impossible.

I try to appreciate and be happy with all the little things he does get to do, like catching a ball, walking down the stairs on his own, new words etc but inside I just want so much more. What mother wouldn't? I hate that I feel like we are living like a time bomb, wAiting to go off. It's awful. And so when I try to do something special and it fails, I feel so enormously crap and guilty and so wish that it were different. not a day goes by that i don't wish that.

I just want him to have the best life he can and experience as much as possible in it so he doesn't miss out on anything. But to achieve such a goal is so hard, so much pressure that contains an enormous amount of guilt when I don't make it perfect for him.

I hate that I live like I'm controlled by time. That every second is so precious and I can't afford to waste one of them. That when I do I then feel guilty that I may have missed a precious moment or denied him an experience.

I can only hope that my worries are unfounded and like the easy going three year old that he is, he didn't care. That he hasn't given it another thought- unlike his mother.



Jayden at the show grounds


The boys


Stopping to have something to eat.


I truly hope all my kids have full lives with loads of exciting experiences and more than anything, long lives.

I always feel the need to end each blog with my hopes in the hope that the more I say it, write it and feel it, then it will be true.


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Wednesday, 25 September 2013

Hearing test

Jayden has a hearing test today and we are on our way. Neither danny or I want to go and I'm pretty sure Jayden doesn't want another test of any description ever again in his lifetime either.

I think danny and i just don't want to be reminded of any of the past and the treatment we put him through or the side effects that are a result of it. it will truly break our hearts if he's lost more hearing and i don't think either of us want to know that. Hopefully however that won't be the case, but Id still rather be at home playing Lego with my little man all the same.

We know we should go however and that's what we are doing. Jayden in the back, happy as ever and Danny and I silent in the front. I remember the many drives we have taken back and forth to the hospital, just the three of us, as if it were yesterday. I will never forget that time.

This morning Jayden woke bright and early and all I wanted to do was go back to sleep but when he looks at me with his big smile on his face I can't possibly be grumpy. I always remember the mornings we woke in the hospital and how much I wished for the mornings at home to be back. How much I prayed that we would wake again one day at home and Jayden wake me bright and early again. That I would have those mornings back. But I also promised myself if I did I would never ever take them for granted again or complain that he woke me so early. And I haven't. I will always be grateful for every morning I get for it is truly a blessing NOT a given. And sleep? Well, who cares about that when I get to spend my awake time that is so very precious, with my little man and Layla and Luke. That's whats important.





We have just come out of the appointment and it looks like we will be going back.
When we first arrived Jayden didn't want to have anything to do with the testing. Would t let the lady check his ears, wouldn't put the headphones on and wouldn't engage in any game. Instead he snuggled into my arms and closed his eyes. This is his standard response to any situation he's not comfortable with. Eyes closed, if he can't see anyone I think he figures no one can see him. We tried every persuasion in the book but he wasn't budging. Eventually we gave up and booked for another time. I do believe this all has something to do with his association of these tests and the treatment he went through and we discussed that with the lady present.
We then decided to try again at another time but bring Luke to be tested as well. When he heard Luke's name mentioned and him being tested as well he slowly came out of his shell and began playing with the toys. We were then able to get a test on his hearing which turned out to be stable, thank heavens. However we need a clearer picture with the headphones so we can find out if one ear is worse than the other, so we have had to reschedule.

He's now asleep in the car, which is unusual and of course worrying me. He started to go down hill on the way in and while we were there appeared flustered. Red in the cheeks and just didn't look a hundred percent, and very whindgey (if that's even a word, as can't seem to ever find correct spelling). I know he's a happy kid so when he's complaining and whiney I know something is up. But what? Always thinking the worst. Wish I could just think the normal stuff other mums think instead of what I do think. Sucks beyond words.

I'm glad his hearing appears ok and they never gave us a hard time about him not wearing his hearing aids. His speech is developing fine so for now they just want to monitor everything, happy with that.

All I can hope for as always is that he continues to develop into the beautiful boy, teenager and man I know he will be. That he gets to have his first day at school, ride a bike, play footy, meet a girl, have babies and be happy. All the things he deserves, that all kids deserve....a life.

I try not to dwell on the what ifs but its almost impossible. Especially when he's not 100%. When he's happy and well I'm able to rest my mind a little but when he's even the slightest bit off, I'm in panic mode.
I'm so hoping he will wake from his nap 100% and I can rest my mind a little. Always hoping for that. That my little man is OK.


Im laying in bed with Jayden asleep on me. not squished up next to me but, on me. It reminds me of when we were in chicago and thats how he use to fall asleep sometimes. I'm sure it was his way of making sure i wouldn't be going anywhere and after today i think its the same feeling for him. i went out this morning and didn't get back till after lunch which is a long time for us to be apart. Missed him heaps and was so happy to see him when i got home.

It was really hard for me to leave him this morning as he was so upset about me going. I had made an appointment with a lady to get a chakra massage- I think that's what it was called. Anyway, I didn't want to go. I never do. I never want to leave Jayden especially when he's upset. I also am a hugely anxious person these days and doing something different rings all my anxiety bells.

Anything that's new I find it so hard. It's so much easier just to stay home and hide. But today i knew i had to at least try.

So as I drove off in my car, a blanket of anxiety covered me and all I wanted to do was turn back. Back to my little man and to my hideaway. But deep down I knew I needed to go. to get help to get through this journey so that I am a better mum for him and my other kids.

But it's hard to put myself out there. I'm already living at a high level of anxiety so when something comes along that makes me normally a little anxious, now it just goes through the roof. I manage to push myself through most days and the last two have been better than the previous but this morning i felt like i just wanted to give up again, just lay with my little man, stay with him and not go anywhere or do anything.

but i didn't. I drove my car to the ladys house, super anxious, super apprehensive and did not want to go in when i arrived. i desperately wanted to go home. I sat in my car stressing about it all for a while and then finally built up the courage to go in.

It was definitely one of those situations where I'm so glad I was able to overcome the anxiety I was feeling about going in. Because it was not the same way i felt by the time I left. I walked out of her house feeling a whole lot better than when I went in.

After I saw her I had another appointment with a Chinese medicine doctor but I thought I was just going to pick up some probiotics for Jayden and have a chat about what he does. However I was there for sometime talking and he gave me a lesson on breathing properly. Sounds all so simple but again, when I left I felt so much more at ease.

I had so much more running around to do but I just couldn't be away any longer. I Raced home to see my little man who was so excited to see me. He was waiting out the front with Danny, he squealed with delight when I pulled up and embraced me in the best and biggest hug ever. God I love him.

He's now asleep snuggled under my arm as I write in this blog. His little breath I can feel on my face and his hand is resting on my chest. He actually has hold of the tree of life that I have on my chain around my neck. Beautiful. I Love him so very much.

Layla has been so much better the last couple of days and Jayden has been good also. I'm still watching him like a hawk and constantly concerned. He tripped a few times today, looked grey again under his eyes. I don't think there will ever come a time where I won't worry. At least for today I was able to breathe. Learn to breathe properly in fact and hopefully put it into practice often.

Today started of yuck but has ended better with my little man now asleep in my arms. Moments like these I want to bottle up and keep forever. I want to never ever forget them. Have them locked in a safe place in my mind that I can go to when ever I want to. I wish I could do that. Make them last forever. The feelings, the sounds, the whole lot, all of it. Never ever to be forgotten.
He rubs his nose, stretches his arm and has now pushed himself away. Must have been getting hot.
It's my queue to join my other two kids in the lounge now to watch some tv before they go to bed.

Hope and pray my kids all grow old together, god I hope for that.

Photos of the last couple of days



I knew Jayden was starting to feel better when he was back to his rascal self with his brother Luke, hiding in the bathroom. Was so happy to see this moment. Honestly, so happy.


This photo of Layla and Jayden was taken before they both were sick but I included it because I love it.


Jayden feeling a whole lot better


Love this little face.


Jayden still not that well here but it didn't stop him playing with his siblings.

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Saturday, 21 September 2013


Layla is now unwell. She was up all night vomiting and now asleep on the couch. I hate seeing her unwell but I have never been more relieved that she is unwell. Her symptoms are similar to Jayden's and i am now banking on it all being a virus. Hoping that the wobbly ness on his feet yesterday was just because he had little to eat and that I can now breathe...at least thats what I'm hoping.

Unlike Layla, Jayden woke up much better. Still pale in the face and grey under his eyes, but happy. I was so relieved to see that smile. Thank god for small mercies.

I know I won't stop worrying and I know this is not going to be the last time I'm stressed beyond reason but I am going to make the most of the NOW. I don't have a choice, it's just how it is. As good as it gets.

I'm still watching him like a crazy person, I know that will never stop. I will never stop worrying but for this moment I'm hoping with all my might that it, is, ok to breathe.


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I had one of my worst days today, although I wouldn't like to be giving them any kind of score as I'd start wondering about my sanity if I looked at them on a graph. Although I have to say I wonder about it anyway, particularly on days like today.

Jayden woke still unwell, looking pale, just wanting to be carried a lot. Wobbly on his feet sometimes and with me watching him like a crazy woman. So the slightest off moment is sending me in a tail spin, which I'm already spinning my way into. Im Snapping at the other kids because I'm so worried about Jayden and completely stressed to the point of exhaustion.

When Danny got up I took the opportunity to go to the shops and once in the car I cried my eyes out. Rang my sister, cried some more then did the bit of shopping I had to do and drove home, again, cried. All the while thinking how much more can I possibly take. I'm at a point where I'm not coping, not at all. the thought of losing my son is pure torture and some days I feel it so bad, like today that I don't know how much more I can do. Then, i get home, see my three beautiful kids and I know the answer.... As much as is going to be dished out at me, that's how much.

Today was really hard. But I got to the end of it and my little man is laying next to me now. I hate this journey with a passion but I know I have to travel it. Somedays are truly excruciatingly painful. I have never known stress like I know it now. Never known worry like I know now, nor fear. They are feelings that have become more familiar to me now than any others have in my life.
But this is my road now and my families.

My little man is here and I'm able to be grateful for that at this very second as by this evening he perked up a bit and I was able to breath a little. So I can say, I'm grateful. But when I'm stressing, beyond words and indescribable worry there is no feelings of grateful, just fear. It's so encompassing no other thought can enter. But right now I'm able to let a little in, and breathe.

All I can do now is hope with every inch of my being that Jayden wakes tomorrow with his little smile, his spring in his step and his beautiful personality shining, and with its shine letting me know, "you can now worry a little less mum".

Friday, 20 September 2013

My little man is sleeping. I have so many things to do but I just don't want to leave him. He was asleep on my lap but I managed to gently move him so I could get a few things quickly done but now I just want to sit and watch him.



I'm struggling today. Another wave crashing in. I knew one was due to come but had hoped not for a little longer.
The past few days have no doubt brought it on and now I'm a bundle of worry. No different to any other day just way more intense. The feeling of worry that cuts you to the bone and leaves you feeling raw all over. Raw with emotion. Wanting to let it out but holding it in, so long spent conditioning myself to do so and only leaving those moments to the times I'm on my own.

Jayden woke last night as i was putting my last blog entry in. He was upset, feeling yuck but also reasonably alert after having so much sleep. He was worried about being sick. "i feel sick mummy" he said, "will it go away?" he asked. " make it go away mummy". God if there was anything i wish more than life itself would be to take every bit of pain away from my son. And i so wanted to tell him i would, i could. I so wanted to be able to do exactly that. What i wouldn't give to be able to make sure my son never, ever suffers again. To watch him in any discomfort at all is truly gut wrenching and holding my tears back when i do is near on impossible. But i do. I don't want him to ever be scared or ever feel alone.

So I sit here now with him. He hasn't eaten all day, Nor drank very much either. I hope with all my might he is going to be ok, that all this is, is a simple virus and he will be back to his chirpy self again. I hope it goes away, just as he wants me to make it do.

But in my mind I'm so worried. I'm so worried that I can't breathe. I keep it together for everyone around me but inside I'm truly crumbling. Anxiety hit me big time at the school carnival today and an enormous amount of self talk in my head made it possible for me to keep up a brave front. What one does to function in a "normal" world when my life is anything but.

I just want to scream. I'm so bloody scared and I just want to scream and yell at everyone who is so damn lucky to not live this way. To not have to wake every morning and work so bloody hard at keeping it together to function. Yes, some days are easier than others but is that because they are easier or I'm just getting better at swallowing the emotions?

I know it's nobodies fault, but in some ways I wish it were then I'd have someone to yell at, and for good reason, and then be able to release those emotions.

It's sunny outside and I'm sitting on my own with my little man inside. He so wanted to go out today, somewhere, but he was not well. By lunch time he barely had the energy to stand and finally gave in to sleep.

Go away bloody virus or whatever this shit is. Leave my son alone he's had enough, I'm so sick of watching him ill and not being able to do diddly squat about it. I hate this damn journey.

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Location:Still unwell

Thursday, 19 September 2013

Jayden's still unwell and we all had a very long night with him last night. It makes for a very difficult day and god how I wish men were more like women. Enough said.

Im tired. Jayden's asleep but I can't seem to get to sleep. Feel like I'm overtired now. Alert, anxious but exhausted. Weird.

Jayden fell asleep on me this afternoon and hasn't woken, it's now nearly 10pm.
When he woke this morning he vomited a few times more then complained of a headache. My anxiety levels hit the roof. Luke and Layla were also home from school because of the teachers strike and so I kept it together. Swallowing my worry, anxiety and fear.

Eventually I got out of the house to do a bit of shopping and as soon as I got in the car I felt this overwhelming urge to cry. Not just any cry but I wanted to do a yelling, howling, very damn loud cry. I felt like I was so full of emotion that it was spilling out of every orifice.

Jayden is waking now, he's not happy. I'm going to finish this now and write again later.

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Wednesday, 18 September 2013

Jayden's unwell. I'm pretty sure he's come down with the same virus Luke had a few days ago but it worries me senseless all the same.
I'm laying next to him as he sleeps, he's groaning quietly with every breath. Every now and then he wakes up suddenly "mummy my tummy hurts" he says. I rub his back and stroke his hair until he goes back to sleep and wait with him in my arms until the next cramp comes.
He's squished up next to me and me him, its cold and we have lots of rugs on.

When I'm rubbing his back and comforting him I think about the times he's been through so much worse. Laying next to him in the hospital bed, day in day out while he suffered. To this day I still struggle with those thoughts and whenever Jayden is ill I think of those times. Specific times, often. So many. Awful, awful stuff.

I hate seeing him ill and even though its only a virus and I pray that it is, I'm worried beyond belief. My little man, I love him so very much.

I don't want to sleep. I don't want to not be awake when he wakes or if he vomits so I'm laying here with him, listening and holding him.

Today Jayden was well, happy and being his jovial self, it's only the last couple of hours that he's suddenly taken a turn.

He just vomited. Poor little mite. For the first time ever I collected some of it in my face and hair. Which is quite remarkable considering how many times he's vomited in his little life and 99% of them I've been right by his side and laying next to him. Danny and i diligently cleaned it up like we have done so many times before and Jayden also knows the routine. together we have him in a clean set of pjs, clean sheets, towel and bowl at the ready and all back in bed in no time. Sadly I know it's coming again.

I wish I could say I'm not worried and that I'm sure it's just a virus. But I can't. I'm not a doctor and when Jayden vomits, I'm always petrified.

He's asleep again but only lightly. With his eyes still shut he says "mum". I rub his back and tell him I'm here. Still with his eyes closed he says "mum, I want to go home". We are home, I tell him, but I know, like me, he is thinking of the past. Associating his feelings now with then. Just like me. We are all scared of that time. frighten it will haunt us again. scarred by images and memories of the past.
The fears never go. The memories never go. they may lay dormant for a time, an hour or two but they never go.

I can only hope that as a family, all five of us, can together build a future that with time the fear of the future and the memories of the past will not be so raw. Hard to believe that's possible right now, but there is always hope....



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Monday, 16 September 2013

I still haven't been able to get hold of Dr Stew which has been a bummer but I received an email today saying he will let me know when he can as he's at a conference, I think.?
Anyway, can't be helped will speak to him soon enough.

I haven't written in a while as I wanted to take myself away from the Internet and just focus on life for a while. Bit tricky at times and a peak at Facebook and emails is hard not to do.

Friday night the kids and I went and stayed with Danny's parents in the hills and that was really nice. As soon as we got there Jayden went into the playroom, got the dress ups out and got Layla to put the princess dress on him. Hilarious!



Him and Luke had quite a lot of fun with all the toys and had us all laughing when luke came in pushing Jayden in the dolls pram. Love my boys and their feminine side. :) priceless.



We left the next day after lunch, both Jayden and Layla both fell asleep on the way back.
It was a really lovely evening and morning and a great start to the weekend.

Sunday my sister and I took Layla and my sisters daughters shopping and whilst they shopped we were able to have a wonderful chat. Love my sister to bits. So lucky to have them both.

When Layla and I came home a couple of hours later this is what we saw in the front of our house....


Three boys happily hanging out.

Layla and I got out and joined them and Danny made a cup of tea and we continued to sit out there for sometime. Simple things are the best things.

Jayden admiring the neighbours garden.




Love my little man so much and he's beautiful little nature. So laid back, loves flowers, all things girlie and cars and trucks and diggers of course and just being three. How I hope he sees so many, many more years. Where he gets to discover more things, do more things, see the world.

Today he helped me make pancakes and he desperately wanted to flip one. So with me over his shoulder, careful to make sure he doesn't burn himself, then he slipped the spatula under the pancake and flipped it like a pro! I was truly so proud and so happy he got to flip a pancake! Again, it may seem like nothing but these small achievements are truly so huge to me. To get to see him do that is truly a blessing. Every milestone is. No matter how big or small.

Today he even walked down our five stairs without holding the railing and Luke was jumping for joy, screaming "mum! Jayden just walked down the stairs without holding on to the rail!". All of us know how special these milestones are. Every time we get one its worth celebrating!

I'm laying next to him now. It's late. Really stormy outside but I can still hear the sound of him breathing and Luke and Danny snoring. My three boys. Love them all so much.

Jayden's feet are in my ribs and his head at Danny's. definitely knows how to take up a bed. I'm really missing speaking to the psychologist I was seeing and have had stuff I've wanted to talk about. But as always, swallowing it down and trying to get on with it. I have however made an appointment with a counsellor this Friday and am hoping that will work out just as good.

Jayden has been well. Some more restless nights, that always make me nervous but otherwise well.
His little foot gave me another jab, think I need to stop here.

Love his little foot, feet, every little piece of him. Just want to see that little foot fill a size 10 men's boot one day. Want that more than anything in the world. Want it for all my kids.




Thursday, 12 September 2013

Skype, combi vans and antidepressants

Its late, I'm up. This time waiting for Dr Goldman from Chicago to Skype me. I recently emailed him and he's not one for emails but prefers to Skype. Im happy with that but the time difference kinda sucks and all i want to do right now is sleep. But he's just getting up and starting his day so I'm now waiting for his call. Hope he will call soon.

I like to talk to him. He eases my mind somewhat and puts me in a place i need to be. Although he never tells me what I really want to hear. Wish he could. But I know no one can do that.

It's quiet. All I can hear is the sound of the fridge. Damn noisy fridge come to think of it. Thinking about my little man and stuff I've been reading on the Internet. Honestly sometimes I think I'm better off not doing that at all as it only depressing me further- if that's even possible.

I cut back on my antidepressants recently, thinking I would try to do this without. Not sure what I was thinking with that stupid idea and have only managed to put myself further into a dark cloud. I guess I just worry about relying on medication, but I'm thinking some situations call for it and for me, I think it's something I'm going to have to stick with for a while, if not indefinitely.

I wish I was getting a call from Dr Goldman and he was going to tell me that they have found a cure! That would be my wish come true. Just to know my little man was going to be ok would just be the best news I could possibly EVER hear.

I so want my man to be the miracle I believed him to be when I first held him in my arms. The miracle that beats the odds and the face I see now, become the face I see on a man. The baby I gave birth to get to grow, be old, get married, have children. I so want that for him.

Every time he talks about when "he gets bigger" my heart aches. Sadness fills me and I just want to cry. I still haven't put Luke's application into the high school we want him to go too as I can't bring myself to put one in without one for Jayden. It just kills me.

His little smile when he talks about what car he's going to drive when he grows up brings tears to my eyes. It's always a combi van or family van while Luke's is always some form of sports car. He talks about taking me for a drive and how we could all fit into his car and I'm so choked up it hurts. It's awful.

I try and not think about it, but there are hundreds of constant reminders every day.

All I want is for him to have the life he was meant to have. Be the miracle I so desperately want him to be. Prove all the doctors wrong and be the 10%. But I am not alone. 100s of other mums are hoping for the same for their children and all of us knowing the odds are against us.

I hate this journey with a passion. I hate that my son is such an innocent victim of a dreadfully nasty cancer. Just hate it.
I still can't look back on pictures of the past without strong feelings of sadness. Missing the time when we were a normal family and wishing so much for it to be that way again. But no matter what, I know it never will be.

He's late. I'm super tired now and I feel so bottled up that a good cry is on the cards. What an existence?

I just checked on my kids and they are all happily sleeping, My little man squished up against his dad and all are snoring.

I'm so grateful he's here. That all my kids are with me. But I know I will never, ever stop wishing that they all get the long happy lives they deserve. Please god, grant me that wish.


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Yoga, anxiety and special moments

I went to yoga today. I very nearly didn't. I was so anxious About doing something new and being around People I didn't know, people with different stories and in a strange place. I told my husband how I was feeling and he said to me "maybe you should just go because you're anxious. because you need to overcome that".
I went and he was right. I went and there were people there that were lovely, an instructor who was lovely with an amazing memory for names. It was well worth the effort. it really was just what I needed. Just what I needed to get me through today.

two weeks ago was my last appointment with my psychologist because the 10 sessions that the government help subsidise was up And i could no longer afford to see her. I thought that would be okay but the last two weeks I have really struggled. i missed having my Wednesday lunchtime session where i could talk to her. I miss Having someone I can talk to and go over feelings and emotions and the last two weeks of going without that I've noticed my anxiety levels getting higher and my stress levels getting higher. Doing yoga today helped, it wasn't quite the same but it was away of letting go of thoughts and feelings. I'm definitely going to try hard to get back there next week.

Right now I'm laying next to my little man as he quietly snores. Happily sleeping. Last night he had another restless night sleep and forever making me worry.
Luke was back at school today and the antibiotics he was prescribed seem to be doing their job. Oh to only have things that can be so easily fixed.

When I got back from yoga today I spent some beautiful quality time with my little man. Sometimes you just need to stop. Just be. Be with the ones you love and stop worrying about everything around you. What we have been through has really highlighted that for me. How important every moment, every second is. it's so beautiful when you get a chance to remind yourself to just 'stop'. or have a little man like mine to remind me for me. "Mum, i just want you to sit with me". Easy. I can do that. And god did I enjoy it. The dinner was late because I did and I was stressing to get it organised. But, it was all worth the moment we had where we sat cuddled in front of the TV watching a movie together. Laughing, talking about the scenes and a big tickle at the end. That's what its all about. Those moments, where you stop, realise what's important and embrace it. Love my little man.

Playing Lego with my little man before yoga.


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Wednesday, 11 September 2013

Im sitting watching tv with my two older kids while Jayden is asleep in our bed. I've just left him snoring to now spend some time with the other two. Ones doing homework and the others happily playing a game so I thought id take a minute to write.

i hated leaving Jayden tonight. he was so snuggled in my arms and i just would have been happy to stay with that moment forever. With the sound of his little breath, the feeling of his little body gently twitching as he fell into a deep sleep, all of it, i just wanted it to last forever and to not miss a second. and now that I'm in the lounge room away from him, I miss him. I miss his presence and I just want to go get him and have him in my arms again.

A while back I spoke with a very special person in my life through tears telling them how i don't know how i will cope if i lose my little man. she said "it will be like he is in the other room, just as he is now, but you wont be able to see him, but he will be with you always." the thought of that was truly crushing, the fear overwhelming and I truly have no idea how any mother survives it.

I read the blog of a beautiful person, mother and friend the other day. She wrote in it a letter to her beautiful son who is no longer with her. I was at a friends house when i sat reading it while my little man played in the sandpit. I put my phone down after reading it and watched my little man playing.



How does a mother lose their son and live on, I thought. The feelings of sadness were overwhelming but nothing compared to what my friend must feel. How will I live without my son, I thought? How does she? All I could think was "please god don't let that happen to my son. Please don't take him as I could not live without him. I could not wake without his smile greeting me, the cup of teas we share in the morning, i could not live without him, not ever." The tears were welling with the thought and the sadness overwhelming and I just had to keep shutting it out, not letting my little man see me sad.

I thought how wished I could change it for her. I sat there so sad for her and tried to participate in the conversation with my friend I was visiting but all the while thinking of my friend and watching my little man playing.

I have no control of his future, no way of guaranteeing he will be ok. Odds are against him and all I have is hope. Hope that he will be one of the 10% that survive this shitty disease.

Some say "time flys", for me it feels like its taking forever. As every scan passes the next seems to take forever to come. Hoping, praying it will be ok. If it is, then its the what seems like longest wait for the next one. The hoping that a time will come when someone tells you "everything's ok now" and the praying that will be so. The waiting for those words to be said and the knowledge that it won't happen for many years, if we are lucky to get those years.

Jayden's next scan is October 17th, it marks his one year from treatment. It's a milestone but we are told a sigh of relief can't be had until two years out of treatment and even then it's only a "small sigh". I wish two years could be now, five years could be now and my little man still with me. I just want to hear those words so bad, "that everything is going to be ok". But I'm well aware I may never hear those words as no one knows that for certain.

When I spoke to my psychologist
a couple of weeks back i told her how much i need to hear those words and she told me. "You're going to be ok leisl, just as you feel your mum say those words to you, you will be okay. You will get through this". With each passing day I know I got through that day that's passed and so I will get through this day that I'm beginning. But how I wish things were so different.

Luke has an ear infection at the moment but that's of course the least of our worries. Jayden had a terrible night sleep last night, woke often and that panics me beyond words.

Will there ever be a day where I don't worry, stress or have moments of deep sadness? I doubt that but with those moments I also have moments of great happiness, gratitude and love. It is those moments I cling to and hope to have so many more of with all my children. That is the wish I have every night I go to sleep. That all my children will grow old and I get to share their lives with them. God I hope and pray for that.





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Sunday, 8 September 2013

It's Sunday night and everyone is asleep but me. I feel like I start so many of my blogs with the same sentence. Fact is, that's more often the case. Danny and the kids are almost always in bed and asleep before me.
Last night was different as I was so tired from the night at the farm that I too was snoring at the same time as the kids.

It was wonderful to go to the farm but i never really sleep as well in someone else's bed than my own. My kids are the same and were very restless throughout the night. It certainly didn't help that there was a thunderstorm and a crash of lightning that I have never heard so close in my life. Woke us all up and no way were the kids going back to sleep after that. So up bright an early Saturday morning. I suspect my dad was in bed early that night too as he too was woken that early.

The kids really missed their dad, especially at night and i will be reluctant to take them away again without him. They really just don't like things out of routine, it worries them. Especially Luke and I suspect that has a lot to do with last year. Poor little mites. I really don't know what exactly goes on in Their heads or how exactly they have been effected by the journey we are on but I hope they are ok and one day they will be able to talk to me about it.

We had a lot of fun at the farm Saturday after our shocking night sleep on Friday, the kids were so happy to be outdoors.






Jayden trying out the doggie door.


Luke and Jayden showing me their muscles





Kids in the tractor with gumpy


Big cuddles for mum in the ute


Luke and Jayden picking lemons





Fresh eggs!



Playing croquet?? I think that's what it's called??





Mr Cheeky









Ending the evening with icecream on the porch.

Love my kids

Thursday, 5 September 2013

Luke's MRI, ultrasound, beautiful neighbours and tippy toes.

It's Friday morning and Jayden and I are having morning tea with our beautiful Italian neighbour, love her to bits.
She has told me before that every night she lights a candle for Jayden and prays for him. Today she told me that she sent a photo of Jayden to her family in Italy and they also light a candle and pray for him everyday. That was so beautiful to hear. Love her and her family and I hope with all my heart that god hears those prayers.


Luke's MRI results were good. Nothing to be seen. God how I wish we had of had the same results for Jayden in march 2012.
Our life would have been so different.

There is still no explanation as to why Luke is having his vision episodes and the next step is to take him to an optometrist. There is the possibility that it is stress related which is a huge concern. We will see the optometrist first then go from there. Just so pleased its nothing sinister. Huge relief.

Of course it doesn't stop me worrying about everything, and I mean, everything. Feel like a sitting duck sometimes just waiting for the next bad thing to happen. I was even recently concerned about myself as I had some unexplained bleeding and immediately thought I had cancer, seriously feel like I'm going around the bend. I had an ultrasound yesterday and everything appeared fine.

As I laid there being examined and watched the screen I thought about the ultrasounds I had for my children and it made me feel so emotional. I had a little cry thinking about Jayden about him as a baby. About all my hopes and dreams for him when I first heard his heartbeat and saw his little body on an ultrasound. How now those dreams are crushed and instead replaced with such uncertainty and worry. I laid there quietly crying as those thoughts came to mind. The ultrasound person told me everything was fine and no doubt wondering why I was upset instead of happy.

Of course I was relieved that everything was fine but found myself feeling so sad as i left. missing a time when things were so different. when walking out of an ultrasound after seeing your healthy little baby on the screen made you jump for joy. Having absolutely no idea that in just shy of two years time we would be told the most devastating news possible about our baby and a journey of indescribable pain as a parent would begin. Not a day goes by that I don't wish for the life we had before back, the life without childhood cancer.

Jayden is well at the moment and for that I am eternally grateful, he still has a yucky cough but happy within himself. Still has a damn runny nose which is driving him nuts. But otherwise good. Will have a cough, cold, virus, diarrhoea ANYDAY over what he has already endured.

Every time I look at him I'm examining him in such detail. Today he looked a little grey and dark under his eyes and I found myself stressing. Every time he wobbles on his feet or walks a little funny I'm panicked. He recently decided to walk with one foot on tippy toes and I panicked. When I asked him why he's doing it and he replied "because I want to" I was so relieved but still concerned he may be just saying that so I would stop bothering him. Honestly, it never stops.

I'm taking the kids up to my dads farm tonight, just for the night, as danny is busy working and off to a course all day tomorrow. Looking forward to a change of scenery and some country air. And most of all some time spent with the kids and my dad. Can't get much better than that.




Jayden at our neighbours playing with a box!


Our beautiful neighbour brushing his hair.

Wednesday, 4 September 2013

I started writing yesterdays blog but was unable to finish it last night as i was too tired and sleep just had to win.

This is yesterday's blog....

Luke had an MRI today. I hadn't mentioned it before. He had been experiencing double vision and other weird episodes with his sight. Of course I panicked and emailed our oncologist whom advised us to check it out.

So I took him in this morning and he was ever so brave. I wasn't allowed to go in the room with him but I could watch from the doorway. So he went in with a complete stranger, all gowned up and got up on the bench to be fitted into the bed that goes into the huge machine. He was amazing. So very brave. I was scared for him from where I was standing but he just took it on the chin.

He was strapped in, ear plugs in, headphones on then left in the room on his own as we went into the other room and closed the door behind us. I could see him from the viewing room and he could see me and I wanted to cry.
Visions of when this nightmare all started flashed before me and seeing my other boy laying in a big machine was just so emotional for me. I didn't cry as he could see me but I felt the overwhelming urge too.
The procedure took around 15-20 minutes in total and we were both relieved when it was done.

I don't find out the results until Thursdays appointment with our GP and am hoping with all my might that all is fine. I was watching the screen as he was getting scanned and I didn't see anything in the images that looked like what we saw with Jayden but I'm still concerned.

Today

Last night Luke spiked yet another temperature and so we kept him home from school again today, he was fine when he woke but according to our GP you have to wait 24 hours from the last temp before they are not contagious and I definitely don't want to be spreading his germs.

Jayden still has a yucky cold but otherwise doing well, was in much better spirits today having his big brother home. Yesterday he wasn't the best but today is much better.

We spent the morning playing Lego and doing morning things then danny and I took the boys to the river for some outside time. Beautiful day, beautiful moments spent with our two beautiful boys. Was missing my girl there though. The absence of one is always felt so strongly. Love them to bits.











Monday, 2 September 2013

I wasn't going to write in here tonight but I've found myself not being able to sleep yet again. I got up and initially decided to fold washing instead. Busy myself. Keep moving. Just fill the seconds with stuff and things to do so as to not think. But visions of last year and thoughts of the past keep flicking in and out of my thoughts and I'm beginning to feel really stressed.

I found myself getting to the bottom of the washing basket and feeling the anxiety kick in. i kneeled looking into the empty wash basket and just stared at the bottom. trying desperately not to think about stuff that makes me feel so crap. I sat back on the floor, put my head in my hands and just stayed like that. Not crying just curled over, slightly rocking. Sounding like a crazy person now...
My back hurts, I try to focus on that. But that doesn't last long. So many thoughts, just wishing my mind would settle when everything is quiet instead of race.

I get up, pick up my phone and start writing in this blog in the hope once those thoughts are out i can sleep.

I'm thinking of A conversation I had with a lady in the shopping centre today, We spoke about the last year and rehashed a whole lot of memories. She didn't know about Jayden or what our family had been through and she wanted to know. As we stood in the shopping aisle I told her everything she wanted to know and she responded with great compassion and understanding. her very close friend lost a child some years back and she said to me "i had never seen pain like I saw in my friend when she lost her child. That's real pain. That's pain that no one should have to ever go through". I don't even know how to explain what I was thinking as she told me this. Part of me wanted to find that woman she spoke of and give her the biggest hug and wish to take her pain away, and the other bigger and more overwhelming thought was " I know. and I so don't want to feel that pain. Ever". I so don't want to lose my child and I live with that fear everyday.
She asked me "how do you do it?". But to answer that question with one simple answer is impossible. Truly, no mother really knows how they get through this journey. They just do. There's no quick fix, formula, 'how to book', and I've spent forever and still do trying to find some sense of peace In This journey. but there isn't Any. You just get up every morning and you just "do".

What I took away from the conversation was the stirring up of old memories of a time I would rather forget but know it's part of our family's 'story' now, still is and there's no forgetting it. I could try and push it back into my mind but it won't stay there. This is our life, the past, the present and the unknown future.

even though I felt I was handling the conversation i had with this lady today well and was ok to talk about everything, I left it feeling very raw, vulnerable and open.

I busily went about the rest of the afternoon trying not to think about anything but what I had to do. Enjoying time with Jayden watching cartoons as he wasn't much up to anything else this afternoon. And just keep my self busy. But by this evening I find myself unable to sleep and feeling anxious.

I can now here Jayden coughing and even though I would have written more, I'm going to lay with my little man. Make sure he's okay and give him the biggest cuddle. Love my little man.

My friend took these photos today of Jayden and me and I just love them.





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Sunday, 1 September 2013

Father's Day

It's Father's Day today and danny was woken by the kids and I with prezzies and homemade cards that the kids were busy doing the night before.



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They were so happy to give them to danny this morning and Danny was equally happy to receive them. we all then sat on the bed while he opened his gifts.






Really lovely morning. Although both danny and i were very tired. Danny because he had to work but also because he was up with me with Jayden and luke for a lot of the night.

Luke spiked another temp and was restless all night and Jayden has croup so he was up a lot of the night coughing and later spiked a really high temperature also.

Neither of my other two kids have ever had croup so last nights experience was new territory for me and very frightening at that. I'm not sure who was more scared when Jayden was having his coughing episode, me, him or Danny. Neither of us had come across this before and its really quite scary. of course being the already super paranoid, super stressed out mum i am it was almost impossible to remain calm. I immediately rang the hospital as i had no idea what to do. i knew it was croup as he had that distinct seal like bark of a cough but i didn't know if i should rush him to the nearest ER (which is what i wanted to do, and call an ambulance) as he was finding it difficult to breathe between coughs. Fortunately I got a nurse on the phone that was calming, and gave me the run down on croup and what I should do and when to panic. Which for me is , always!

I truly cannot wait until winter is over because this is no fun at all for my kids or my sanity.

I was so relieved to hear after I blogged about my super sensitivity in regards to my kids getting illnesses that other mums whom travelled my journey are the same. That was very reassuring that I'm not a complete basket case after all.

Both boys woke up happy this morning but as the day progressed it was clear they weren't well. Jayden's all but lost his voice and went to bed with only a whisper left. Am dreading this evening as the nurse told me it can last up to 6 days and is worse at night. Poor little mite.

we spent Danny's day hanging out and not going anyway except to the park as the boys are full of germs that we definitely didn't want to spread.

The park we went to is just around the corner from us and one that we regularly go too. Today was particularly special not just because it was fathers day but today i watched jayden climb part of the playground by himself that he has previously not been able to do. This might not seem like much but to me its huge. As I watched him carefully climb, nearly slip at one point but recovered well, I was so proud. So proud and so happy for him, for all of us. That our little man has reached this milestone. Each milestone he achieves no matter how small is so huge. I'm so happy and relieved that he gets to them. And I think to myself " I'm so glad he got up there all on his own. thats he's here achieving this". you never stop appreciating these moments when you know how easily they can be taken away. Never. And you never ever stop wishing and hoping for more.

Climbing on a playground might not be much but its a climb I'm so very grateful he got to do.

He was so very chuffed with himself. when he got to the top, he turned around to me and said with excitement "i did it by myself, mum".
I was so proud and hoped with every inch of my being that i get to see him climb so much more, reach so many milestones and see his face so proud that he got there.