Sunday, 30 December 2012

Again

Jayden vomited again today. Not this morning but after his nap. I don't know what to think. It's an awful way to live, on the edge of your seat everyday, riding a journey that's more like a nightmare.
I sat at the table after cleaning it up, and felt numb. I don't know what else to do, think, feel and I know nothing is going to change what could happen.
I hate this. With every inch of my body, I hate this.

As I put Jayden to bed tonight he kept talking about when he gets bigger. When he will fit into Luke's shorts, when he's bigger. I smiled at him and agreed but inside my heart was tearing into pieces. People say I'm doing well, on the surface of course I am. I have to. But inside its no picnic. Every time I look at him I want to cry. I don't, I love him, cuddle him and can't get enough if him.

I laid in bed with him tonight and gave him the biggest, longest cuddle he would let me give Him. He squeezed me back and when we broke from that cuddle he said " gonna be alright mum", "love you much, mum". I told him I loved him so much too and wanted to cry. I didn't. I looked at him and smiled and he smiled back. How he knew to say that I will never know.
He is without a doubt the most amazing human being I have ever met. The bravest by far and the courageous. My little man, my hero.

I just love him so much and tonight I just want to sleep. I want to breathe, enjoy hearing him breathe as he sleeps and just be.
I want to sleep without worry, dream without nightmares and wake to his smiling face.





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Saturday, 29 December 2012

Documentary

So much for every second counting, I spent this morning yelling at my middle child and therefore certainly not making every second count today. I truly struggle with my eldest boy and am not sure what to do with him some days. for a long time we have really tried hard to make his life so that he does not feel so left out. But that has been very difficult to do at times and now I'm at a loss.
I think we just have to all accept that things are different for us all and we all have to make some adjustments. It's just hard. Hard for everyone and I don't believe there's an easy solution. I just wish sometimes that I could feel as if I'm getting it 'right' with him but most days I I don't feel like that at all.
I put him to bed early with Jayden tonight and I'm so glad I did. They haven't had a bath together for ages and they had a ball. The laughter coming from the bathroom between them was priceless. Just beautiful. Best sound ever, truly could listen to that for the rest of my life.
They both fell asleep after we finished reading books almost immediately. Very tired little men. My daughter went to bed shortly after and for the first time in I truly don't know how long, danny and I were left on our own to watch tv. He is usually in bed early because of his job but not tonight. It was nice to spend some quiet time together.
We watched the documentary by William j Saunders that was done on Jayden's treatment when we were in Chicago. I only just managed to find it today! Its beautiful and made both Danny and I cry. We were reminded of the beautiful people we met in chicago and the wonderful guys we spent a few days with that made this film. Really amazing people. We miss them all.
It's only a 3 minute documentary and its just so well done. I hope everyone I know watches it so they know why we travelled all the way to the states and of course to see how good this director is. Its Truly beautiful.
It reminded us of the night we sat in our apartment in chicago where the interview was filmed, what we were feeling during it and how we felt after it. How difficult that time was emotionally but also how lucky we were to meet so many beautiful people.
I posted it to the Help Jayden Stone Facebook page but it also can be found at the following link:
http://vimeo.com/m/50631659
At least I hope that's correct.
The director is truly amazing and tonight we also watched clips from his other movies and they all look wonderful. The next time danny and I get a moment together to watch something we will be sitting down to watch one of them.
I'm in bed now with my little man squished next to me. He's got a beautiful head of hair now and I love touching it. Unfortunately his hair won't grow where he was radiated so he still has a big bald patch at the back. But , he still looks beautiful.




My beautiful sister came to visit today again, she was here on Boxing Day too and Jayden just can't get enough of her. She's such a warm, kindhearted person with so much love to give. We are all always so happy to see her and her gorgeous kids. So this afternoon was really nice.
Well its late now and I should be sleeping but instead I'm laying thinking. The documentary we watched today stirred up a lot of emotion in me and its difficult to sleep. It pushes the reality of Jayden's tumour back into my thoughts and just makes me incredibly sad. He looked so beautiful in the pictures and so innocent. Watching him reminded me of how much i know he loved spending that time with all of us every second of everyday in chicago. We all did. Kids weren't at school, danny couldn't go to work so we were all in it together. Really important. Really special. It also reminded me of how very difficult, scary and incredibly emotional that time was for him as well. He was amazing through it all though and his determination to just 'get on with it' was and still is amazing.
I love him so very much and so does Danny, I don't think anyone realises how hard it is for danny too as he doesn't blog or talk about it much to anyone. he holds it inside and locks it away. I wish sometimes that I could do that, have a key and a place I can lock my fears away. Only open it when absolutely necessary, but otherwise keep them hidden.
I think if I did I would use it to lock my sadness, anxiety and heartache too.
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Friday, 28 December 2012

Every second

Jayden didn't sleep well last night and woke at 4:30 am. Fortunately I was able to get him to go back to sleep until 6ish then we got up and had our cup of tea together. I love that I have this time with him that he sits on the kitchen bench chatting away while I make Our cups of tea. We talk about stuff and things and whilst the kettles boiling we will pop a bit of toast in the toaster too. Then we take our bits into the living room and cuddle up on the couch to ABC for kids shows and sip our cup of tea. Today I was anxious, scared and worried. i waited for the vomit. It never came. I was able to relax a bit but I expect it will come tomorrow. I hope not.

As we sat there snuggled up with our teas in our hands I thought about how nice it was to do that. I love that time with him. I love that he's always near me, that he wants to be with me where ever I am. That if I go to look for something in my room, he wants to come. When I go out to water the garden he's sitting or playing near me or up on my hip. He's with me while I'm preparing dinner, comes with me almost everywhere i go and i love that. He's my little shadow and I love that little shadow.

his brother and sister both had play overs with their friends today so Jayden and i just hung out playing lego, watching Elmo, and making cups of tea outside by the sandpit. Very hot day so i tried to convince him to spend the bulk of it indoors.i still had all my mum things to do but he loves to tag along and help with all of it. There's nothing he won't help me with.

I really enjoyed the time alone with him today. The other two were too busy with their friends so we got to play without interruption. Not that I mind that interruption as I Love that too. I love that my kids need me and ask me for help with stuff in general. I just love being their mum.

i had a comment posted today by a beautiful woman whom I have met through this journey. she is beautiful in that she is an incredibly loving and wonderful mother whom is also travelling a very, very sad journey of her own. I don't often comment on comments made but I always read them and they are truly inspiring, comforting and mean a lot to receive. In this particular comment not only were her words so true but they were written by someone who truly knows how i feel. No one can make this journey better for her or i but sometimes a few words can make us stop and think, "smell the roses" i think is the correct phrase. she did this for me today. i know nothing will fix my pain or my fear, the heartache i have every time i hear his voice and look into his big brown eyes, or every time he smiles at me. but I can stop and think and remember that he is with me now. That all my worry and fear will not stop what will be. That I don't want to look back and wish I had of spent more time laughing and smiling rather than scared and crying.
I know nothing will truly stop that fear or the sadness but if even for a second I can think of her words and make that second count then that is better than no second.

I've had other similar beautiful comments before and again they remind me of what I need to be trying to do. I appreciate those little reminders so much and when they come from people who truly know this journey I also don't feel so alone.

I know that there is no easy way through this. And I know i will always have times where it's all so damn overwhelming, that crying my eyes out and feeling so incredibly sad will be the only things I can do but i hope i can spend more time trying to enjoy the moments i have. "easy said than done" danny said today. He's right but if we don't try, and he knows that, we may live to regret it.

I've probably mentioned it before but I remember the day my mum died. that day i had held her hand in mine as she lay on her bed and I just softly held it, I never gave it a tight squeeze, you know the type of squeeze that you give to let that person know you really love them. I didn't do that because she was so weak and I was worried i might hurt her. I spent years after she died regretting I never squeezed her hand. Years of regret over the smallest gesture. I don't want to do that with anyone ever again. I want to make sure every second I have with Jayden, with all my kids count and that I will never regret not holding them tight enough, cuddling them long enough or laughing with them loud enough. That they always know they are loved and loved to bits.
That I make every second count.





Wednesday, 26 December 2012

Vomiting

Just when I thought I could breathe again Jayden woke up this morning and vomited. He had his cup of tea and shortly after bought it up. Danny and I diligently cleaned it up without a word. You could have heard a pin drop after we finished. We both just sat in shock, despair and under an enormous cloud of worry.

It will never stop. Concern about that ugly tumor returning and it drives me crazy. I have spent the entire day thinking about it, worrying about it and as a result feeling physically ill. As I put Jayden's clean clothes away in his cupboards I felt a knot in my stomach that hurt so much I sat down and cried. The emotional weight that we carry around keeping it together so as to live some kind of normal life was so heavy today it was too much to bare.

I truly don't know what to say or do anymore and just find I cry in silence. I hid myself in his room and balled. For it doesn't matter how much I talk about it, it doesn't stop hurting. It doesn't stop me worrying, it doesn't take away the reality of this shitty mess and I'm buggared if I know why we don't get a decent break from it. Or is that even possible?

I thought for a few days there I could feel somewhat normal and in someways I did. I managed to have a laugh, smiled and enjoy myself over Xmas even though deep down I still hurt. Truth be known I just wanted everyone, especially Jayden to remember this Xmas as a truly special one no matter what, should it be his last. That we can all remember being happy, smiling and loving being together.

My little man is asleep now and I'm laying next to him. It's quiet and all I can hear is him breathing. Tears roll down my face as I try to fight off the thought of not being able to hear that sound. I'm so scared. That one day I will lose him. That with every awful sign like this morning, that fear grows. Nothing is more painful than this, nothing.
I so wish I could hold him forever. That nothing would ever take his beautiful face away from me. That his arms will always open to me for a cuddle, that he will grow old doing that.

Christmas is over, a new year about to begin but everyday remains the same. That no matter how much we try the fear of his cancer returning will always be there. Today has just highlighted that even more so.




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Tuesday, 25 December 2012

Christmas Day

It's late in the evening and after ways too much to eat and a very busy day, we are all in bed. Everyone asleep very quickly except me, of course.

Our day started extremely early with Luke waking at 3 in the morning begging to be able to open his presents. Fortunately I convinced him to go back to sleep although I don't think that actually happened and eventually I gave in at 5 am.

With all the excitement Jayden woke shortly after and Luke couldn't wait to show Jayden what Santa had left. Jayden was delighted! A lot of "wow"s and huge smiles and loving the unwrapping. Of all the things he got he loved the 'tea set' the most. "Like mum" he said as he made a cup of tea near the sandpit with water from the hose. He also loved his kid size broom and mop. Funny. I had a feeling they would be right up his alley when I saw them and I was so pleased to see how happy he was with them. Next thing he loved was the little tool set he got " just like dads", he said. Beautiful. It was so lovely to see him so happy. To see all the kids happy. I just love that more than anything. Big smiles, just brilliant.
My only complaint for the day like all parents is the amount of work it is to take toys out of there packaging and the nightmare of assembling others. In the big scheme of things though doesn't really count as a complaint. Would have bad packaging any day over childhood cancer.

By lunchtime we headed to Danny's mums house for the rest of the day. In the past I have found family get togethers with the in laws difficult because i think when you join any two families together its different. sometimes difficult but i think different is a better word. trying to fit in with another family is tricky. the way you think may be different to them and often is. your upbringings are usually somewhat different and you never quite feel the same as you would if it were your own family. Now however with everything that has happened I couldn't feel more a part of this family than I do now.
Danny's mother is an amazing woman who never once let us down during this whole nightmare. She has been solid in being there for us whenever we have needed her and could not have possibly done more. My relationship with her has developed into one that is so important to me and i truly value. I could not have done this without her and I'm so grateful she is the person she is. Deeply strong family values, and just a wonderful mother, grandmother and mother in law. Danny's brother and wife were there as well with their children and his uncle, auntie and grandmother too. All beautiful people.

I was so happy to be spending today with people we love and who love us. People who would do anything for each other because they care. a really lovely day.

a lovely day but also a very emotional one. There were moments i thought about Christmas without Jayden and i had to make myself stop the thought as it hurts so very much. struggling to be jolly sometimes and moments where i worked hard to stop the tears flowing.

He was just so beautiful today, so happy. Laughing with the kids, having a brilliant time with Nanna. Loves his Nanna. Watching him just breaks my heart. He's such a perfect normal little two year old. It's just truly not fair.

When we got home The kids continued to play happily together with their toys and it was just perfect. Well, as perfect as we can have it. Our new 'normal' so our new 'perfect'. I'll always know what would make it truly perfect but for now we are happy with what today has given us. Smiles, laughter, love and beautiful memories.



Jayden with a potato chip in his mouth clowning around with me after we arrived home from lunch at Danny's folks.

Monday, 24 December 2012

Xmas eve

It's midnight. The kids are all tucked in bed and we have finally finished wrapping and putting the gifts under the tree. Almost forgot the carrots for the reindeer out the front and the treats for santa, now eaten. I am So excited about seeing their little faces tomorrow morning. Especially Jayden. It's the first Christmas he will play with the gifts rather than the paper. the first Xmas he's slightly aware of and getting excited about. He knows something's happening because Luke and Layla have been on about it for ages, especially today, but exactly what he's not entirely sure. Has figured gifts are involved and Santa.

After Danny and I finished up tonight I stood outside for a while and thought how wonderful it would be if the big man in the red suit really was out there. That he were up in the sky busy doing his job that I grew up thinking he did. What a magical time that was when I truly thought he existed. I wish he did. If he did I know what I'd be wishing for from him and it wouldn't be a fancy dress, car or anything that money could by.

We had a quiet Xmas eve with the kids and I truly can't think of a better way to spend it. No partying, no alcohol, no house full of guests. Just us, spaghetti bolognaise (the kids favourite) and ice cream cake for desert, topped off with a xmas movie on the couch. It doesn't get better than that.

I'm now in bed next to my beautiful boys. Sighing heavily i think to myself how much this just HAS to be the beginning of many more christmases to come. That we shall all be together for years and years to come.
That's my Christmas wish. That all my children stay healthy and well and I get to watch all three grow old, have babies and live happy, fulfilled lives. I wish for that this Christmas.






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Sunday, 23 December 2012

Two more sleeps

I've just been watching my little man fall sleep and now he's in a very deep sleep. The light is on in the hall way so I can just see the outline of his beautiful face and he looks so incredibly peaceful.
He had his bath and bedtime late tonight because I wanted him to see our Xmas lights and he was delighted. Well worth having the late night even with the possibility of a whingy child tomorrow.

When i put him into the bath tonight i noticed some tape left over from the days we use to have it on hand by the bath to tape up all his lines before he got into the bath. its very hard to think about those times and when i do it makes me feel ill and incredibly sad. i often find reminders around the house of that time, the towels from the hospital that we would have to take home from the hospital because he would vomit so much on the way home. The syringes for all his medications, feeding bags and we still have cartons of the milk he was fed through his NG tube stacked high in the office.

They all leave memories of a time I'd sooner forget but know there is no way I ever could. Its torture to think about, but its not going away. When I see these reminders I pray in my thoughts that i never see any of it in use again. At least I think thats what you could call a prayer, where I hope with all my might that Jayden remains well and we can dispose of all these reminders for good, Hold a bomb fire and set it all alight, watch it burn and say goodbye to it all forever. I hope so, with ever inch of my soul, I hope so.
I'm not sure why we haven't already to be honest. I know that every time I find something like a mask for his oxygen in the toy box I bin it. Any syringe that was used in the bath I've binned. The milk we can't give back so I don't know what to do with that and the tape we can use for first aid but I've packed it away. Either way I manage to find something still in the house that's a awful reminder and would like to burn it all.

I ran into a relative today at the shops which was nice. With everything that has happened its been impossible to go see anyone and certainly not been a priority. So it was nice to see her face again and stop for a chat. I'm trying hard to just focus on Xmas at the moment though and just enjoy this special time with my family so when I saw her today I found myself avoiding talking anything about Jayden and how I was feeling. Sometimes it's just not where I want to go.

I know it will always be difficult no matter what day it is or time of the year but for today I just wanted to focus on buying the presents I needed to get and picturing their little faces when they open them up. There is no doubt about it, giving is far more satisfying than receiving. I remember thinking that about my mum. She just loved to give presents. She was never that fussed on receiving them, loved the gifts of course but would prefer to give than receive any day. I understand that feeling too and love it.

I'm so excited for my kids as we will all be home together and this year is the first year Jayden has any understanding if it all. He loves Santa! Is very excited about the prospect of him visiting again but doesn't really understand he will be doing it again but at night and he won't see him. That some prezzies will be left under the tree by him to open in the morning. Hes not quite aware of that but will be on the day! I'm so excited about that. I truly can't wait to see his face!

So it's late now and I need to sleep, I don't want my last thought before i sleep to be of the past or the future but in stead the present. Right now he's sleeping and happy, right now he's here and right now I can snuggle up to him listening to him breath and be the happiest mum alive, right now..




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Friday, 21 December 2012

Old soul

Everyone woke up happy today after a peaceful night sleep. How that can make such a huge difference to the day.
Washing done, boys playing happily, no squabbles - perfect.
I'm still left a little shell shocked from the movie I watched yesterday as I think travelling this journey sometimes you live in denial that your child isn't one of the unlucky ones. But truth be known Jayden is. He has a dreadful brain tumor and watching that movie reminded me how serious his condition is. I already know this of course but a little part of me wants to think its all ok. Without that part I simply wouldn't get up in the morning.
He's playing so happily at the moment, chatting away to himself and just really content.
I can't ask for much more than that. As long as while he is with us he is happy that's all that matters. I want every second of however long or short his life will be to be full of smiles and laughter. He makes sure of that too. Sometimes I think he's an old soul in a little body that somehow knows something is up. And that little old soul wants to be sure he gets the most out of his life and share his love and smiles with everyone around him.






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Thursday, 20 December 2012

Truth 365

It's the middle of the night and I can't sleep. I've just come back to bed after sitting in the kitchen watching a video on YouTube. I was checking Facebook when i couldn't sleep and someone had posted the video on the Ward 3B Facebook page. It's called "the truth365: be the voice....". It's about childhood cancer. I cried and considering everything we have been through I still managed to be shocked and appalled. the little funding that goes into research for pediatric cancer is truly shocking especially to any parent who has a child with cancer. i was truly disheartened.

The other thing that stuck in my mind was that the drugs they use in childhood cancer now were developed 30 years ago and the only difference is they pump higher doses in the kids today??? That is truly devastating in my mind.
So we've spent the last 8 months allowing doctors to pump chemicals in our son that were developed in 80s only now it's a much higher dose? How backward is that? It made me feel ill. Truly ill and truly disheartened.

I came back to bed and sat by Jayden's side and watched him. his beautiful face, his innocence. he never did anything to deserve this sentence.
I thought about all the shit we allowed them to pump into him and it made me feel ill. In the video it talks about the devastating side effects of the chemo how it can cause other cancers among a whole lot of other nasties later on down the track.
but more than anything it amazed me how little research is going into it. that because its not as common as adult cancers it doesn't get the funding it so truly deserves. Insane.

It didn't give me hope, it saddened me. It was a slap in the face of the reality of what we are dealing with in our family and god knows I've had plenty of them.
Most people have no idea what childhood cancer is about and some don't even know kids get cancer. I know before this happened to us I knew nothing about childhood cancer and now I know ways too much.

I hope that video i watched gets viewed by millions and that something gets changed soon rather than later. i hope for this with all my heart as i would never want another child and parent to have to endure what we have had to endure and continue to do so.

I know Jayden's fight is not over, it never will be and everyday I'm scared. Today he slept for three hours and I was terrified. Before his tumour was diagnosed he would sleep for hours in the day. I remember boasting about it to another parent now it scares me senseless, nothing about it is worth boasting about now.

Its morning now and I talked to danny this morning about the video. Both of us have done a lot of research into Jayden's cancer and both of us can't believe the treatment that is out there for these kids. I truly believe that in years to come doctors will look back on what they do to kids now with cancer and cringe, they will be appalled that those were the options and that they put children through it. This is what I hope will happen. That there will be change and treatments will become kinder and more successful.

But for Now this is all they have available, and the success of it is dismal. In the oncologist eyes a child that lives beyond five years after treatment is a survivor?? Not a lifetime, but five years. I personally think that's the most ridiculous time frame to gage the success of treatment in children? So if the child dies in the sixth year they are still classed as a survivor? Madness.

I watch my son today and I know deep down his future is uncertain that there is a big chance we won't see him put a school uniform on. I also know I need to love him to bits and enjoy every second I have with him now. That one day our family could be four and not the five it's meant to be.




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Wednesday, 19 December 2012

Santa

Jayden had a great night sleep last night and even slept in until 7:30 which is a first. I of course woke up at the usual expected time of 5:30ish and couldn't get back to sleep. I laid there watching him sleep and dosed in and out of sleep. When it got to around seven I found myself worrying that maybe him sleeping so much is a bad sign? Honestly I just can't stop worrying. I had to tell myself to let it go and believe he's sleeping in because he needs it rather than thinking worse case scenario. Difficult to do.

He woke up happy and that set the scene for the whole day. He was in brilliant spirits and played happily all day, not a single cry or whinge. It was Just beautiful to see him loving life.

Santa Claus came to visit us today and the kids were over the moon. Jayden was so happy to see him it was priceless.





He was a beautiful santa, we just loved him, it really made our day. Thank you to our beautiful new friend. We love you.

one of the gifts he left us was a gingerbread tree! I have never bought anything like this before but from now on its definitely going to be a new family tradition.

The kids sat on the kitchen table, mixed up icing sugars and decorated a gingerbread tree with all things sweet. Great fun! And then we ate it for lunch!!! Even better! Everyone was very happy with that.




It was a great day had by all. I even managed to whip out and do a bit of shopping. later we had visitors from down south which was also wonderful.

It's really beginning to feel like Xmas and I'm so so very glad Jayden is feeling well. It means we can all breath a little and enjoy our very special time together.
It shouldn't matter though that its the Christmas season, as everyday is special when we are together. Every hour, every minute, every second.

At one point in the afternoon Jayden was playing happily outside and he called me out to him. He had gathered a small bucket full of wood chips he found in the garden and wanted to show me his findings. He was so pleased with himself. I was so pleased for him and sat with him listening to him talking about his wood chips. I couldn't stop thinking as I was looking at his delighted little face how lucky I am that he is with me right then at that moment with his happy little face. I just wanted to give him the biggest cuddle and kiss him all over his face. Of course I didn't as he was in deep conversation about his wood chips but my goodness I could just eat him up. Scrumptious little man. I'm just so very thankful he's with me.

I know not everyone has their loved ones with them now and not a day goes by that I don't think of them. That this time of the year is also a huge reminder of who we no longer have with us.
It can be an incredibly sad time and I don't know how anybody gets through that. Losing my mother was one thing but a child is very very different. I live with the knowledge of that possibility everyday and I know how much that hurts. My heart goes out to those that no longer have their babies with them this Christmas and how I wish I could take their pain away.

I know how lucky we are, that we are all together. Any day is special because of that, it doesn't have to be Christmas. I will be forever grateful for everyday I have with us all together for I know how fragile life is.

Today was extra special for the kids and to see all their smiles when Santa came was priceless.
If only we stayed in the minds of a child where magical things were real and simple things were the best things in life like 'wood chips'. how much easier life would seem then.





Tuesday, 18 December 2012

Sitting in the car once again, parked under a tree. Jayden asleep, looking angelic and me wishing I was doing the same. Not the best night had by all last night as Jayden was very restless and we have no idea why. He woke up not the best and has been grumpy for most of the morning but I'm hoping its just because he's tired.

The slightest sign of him not being himself completely puts me in panic mode and right now I'm trying to convince myself not too worry and that it's sure to be something insignificant.

I had made plans to get a lot done today while danny amused Jayden but Jayden was not going to be with anyone else but me. For me that's usually a sign that he's not himself and possibly feeling well.
Hopefully it's all because he's tired and when he wakes from his nap he will be fine. Praying for that.

On a different note I recently got in contact with an old friend that in the beginning of this mess like all my close friends I found myself withdrawing from. this whole journey is so overwhelming, particularly in the beginning and talking about it to anybody was pure torture. later i found myself leaning more towards people who are travelling similar journeys and therefore had some idea of how i felt and a handful of other special people.

Lately I've felt bad about that and reached out to one of my close friends who when she didn't return my call I thought I had indeed upset her. It worked out that her phone wasn't working and she's flat out at work but was able to return my email.
When I read it, it made me cry. She told me she totally understood why I leaned more towards people who understood our extreme circumstances and she would never take offence to anything I wrote. She said people who know you would understand and that when I was ready to catch up to her she would be waiting. What a beautiful person and friend. I feel so lucky to have people like that in my life and am looking forward to indeed seeing her once again.

This has without a doubt been a difficult journey and continues to be so. It has tested many of my relationships but those that are worth keeping are those that are prepared to understand. It has highlighted to me who is important to me in my life and whom I should steer away from. For life is too short to waste precious time or energy on people who don't bring support and love to your life. I've had to learn that the hard way.

It's a few hours later and I'm now laying in bed next to my little man. He didn't wake up happy from his nap today unfortunately but slowly came good as the day progressed. I don't believe he is quite himself though and feel As if I'm constantly staring at him through a microscope. For instance His right eye was red today and I was worried it looked like it may be drooping but the more I looked the more I realised maybe not. He tripped over a few times this morning as well and again i was feeling uneasy. Nightmare.

He's asleep though now and I'm hoping he gets a really good night sleep to make up for the crap one last night and to stop me worrying. Although, I'm not sure that's possible.

Santa is visiting us tomorrow thanks to a beautiful friend of a friend. Kids are really excited and so am I. A day to look forward too , although any day with all my children with me, is a great day.




At the park this afternoon.

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Monday, 17 December 2012

Visit to PMH

I found myself a bit teary today. a visit to ward 3b in the morning is enough to set that kind of mood in me for the day.
Somedays are definitely a whole lot harder than others. And today would go down as a tricky one.

In the morning after the kids went to school Jayden and I went into PMH. we didn't have an appointment but instead had a box of goodies we wanted to give to the staff on ward3b for Xmas and to say thanks. The kids decorated the box with paints on the weekend and shopped for the goodies to go in, hence some of their favourites went in as well.

Going back into the ward is always difficult and I find it really hard not to tear up the moment I go through the glass doors. Thats where the sadness in my mood begins.

It actually scares me a lot being in there. its the one place I never, ever want to have to return with my son ever, ever again! And every time I walk In There I feel sick to my stomach and just want to get out of there and as far away as possible.

However we were there to drop a gift off and thats not a bad thing. While we were in dropping the box off we visited the wonderful woman I often write about and her precious little boy. I was so happy to see her but so sad I'm seeing her in there. I really feel for her and every time I visit it gets me choked up. I so wish I could do more for her, anything, but i know what she wants i cant give.

when I'm with her in there it frightens me as I'm so very worried I could be her one day. I watch her with him and I feel an overwhelming sadness that I will see myself standing in her very shoes one day. I so want to change things for her, for both of us and it makes me so sad that I can't.

I believe there is always hope though and certainly for her little boy. He's a little fighter and he will get through this but I just hate that he has to do it all again, so unfair. As if the one time isn't bad enough.

While we were there I asked her what her son would like for Xmas and she said he can have whatever he wants. I thought that was beautiful because that's how I feel too. It's not that we can actually buy them whatever they want but we will certainly give them the best xmas ever.

We left not long after and came home. Once home I wrapped some Xmas presents while Danny entertained Jayden. All the while I was thinking of my friend. I hoped that she was ok. That she was managing inside herself. I know how incredibly scary this journey can be and I hoped that she was able to breathe. I just wanted to wrap them both up in a big warm blanket, take them out of there and make it all better. I remember thinking that when I was in there with Jayden. Just writing about it now makes me feel ill, the thought of those times. I try hard not to go back there in my mind as honestly, now, I don't know how we did it.

But right now he's laying next to me in our bed and I can hear his little breaths. I'm looking at his beautiful face and I'm so very very grateful he is lying next to me right now. He's had a great day, very happy and no vomiting. I can't ask for much more than that.

I feel like my little man is finally back with me. The little man I knew before all this mess started. My cheeky, sprightly, adventurous, into everything gorgeous little boy Is back and how grateful i am for that too.

He's talking so much now and engaging in conversations and its just brilliant. I'm getting to know a little man growing inside him and god I hope to see much much more of that.




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Saturday, 15 December 2012

Feeling the breeze

I woke up this morning with Jayden sleeping right up against my back and me nearly hanging of the edge of the bed. I needed to go to the toilet but dared not move in fear of waking him up. Instead I laid there for nearly an hour listening to my precious little man sleeping. Beautiful. When he woke the first thing that comes out of his mouth is "mummy". Aren't I lucky? I gave him the hugest cuddle as always and we went upstairs to have our cup of tea together.

At this time of the morning we are the only ones up and I love it. Just Jayden and I hanging out sipping our cup of tea and watching music videos on telly as the kids program's haven't started yet. Some very naff 80s videos playing and I seriously can't believe I once thought their dress sense was cool and also dressed like them.

He still hasn't vomited and I couldn't be happier about that. In the last couple of days it's as if he's found his giggle because he's spent so much of the day giggling and laughing- pure joy.
I think he feels so much better in himself, no pain and no longer feeling like crap from the after effects of the chemo. Brilliant.

I'm now sitting in the car with him while he's sleeping and I can feel the breeze. It feels great. Watching him sleeping and knowing right now, at this moment he's ok, is the best feeling of all.





I love this picture of him thoroughly enjoying his food. :)

Friday, 14 December 2012

Morning appointment

I took Jayden into Hospital this morning for his scheduled appointment at 9:30. He walked through the hospital like he owned the place, all confident and smiling. His podgy little body swaying as he walked with his big smile on his now very round face. He certainly considers visits to the hospital the norm now. Part of me is very sad about that but the other part is happy that he's not traumatised about it.

As we walk in I see parents in the emergency section with worried looks on their faces with their children close and I get a quick flash back of our first visit. I can only hope for these parents they will be leaving for home with some antibiotics and an "everything will be fine soon enough" comment from their doctor.

We rode the elevator down to ward 3b and waited with everyone else in the waiting room. We left home without the wee sample so we were given a small wee container and for the next half hour we kept slipping of to the toilet to see if we could get a sample. Finally after the fourth go we did! I was so proud of him as he told me he wanted to have a wee and low and behold he did one. Think he's ready to be toilet trained, yah for that!

Soon after we saw Dr Nick, he did his usual examination and he was happy with how Jayden is. I have to say so am I. Even though he's a lot heavier now he has certainly been walking better, no vomits and his speech has improved. Hard to believe its all due to the steroids but something has definitely caused a shift and that's the only thing that's changed in his medications.

It's been extra nice to not have him vomiting and no doubt a big relief for him. In fact this is the longest period he has gone without vomiting! Brilliant! I've been so wrapped up in worrying about everything else that's its only just occurred to me as I type that it has been over a week and no vomits! Just great!
Have to be grateful for that!

Speaking of grateful when I popped down to the shops today I ran into my beautiful neighbour and luck would have it we both had time to stop for a cuppa. Now this is a woman who has an incredibly brilliant perspective on life, sees things for what they are and gives the most brilliant advice. I just love her and am so damn grateful she is in my life. She also reminds me of whom I should surround myself with in my life now and forever. She oozes love from every inch of her body and when I'm with her she makes me feel so understood . She suggested to me today to put in my blog things about Jayden that he does during the day that I'm grateful for. I just thought that was a brilliant idea. That even though its a given that I'm grateful for every second I have with him I often forget to mention the special moments I have with him which are the things I want to be able to look back on and read as well at a later date.

So today I have to say Jayden was in fabulous form. Lots of giggles, even for Dr Nick. He laughed when Dr Nick talked about something sill y that i cant remember exactly what that was right now but basically Nick was trying to make him laugh and he did when previously he wouldn't. I think he's beginning to like him, nice.

Jayden's round little body is just so damn scrumptious to cuddle. Ive spent most of today taking every opportunity to do just that. I just simply can't stop cuddling him and kissing him and how brilliant that there's so much more to Cuddle.

when i pulled into the driveway after being out this afternoon he was waiting for me with Danny and squealed so loud with delight that i think the whole suburb must have heard him. he's so loud i love it! The complete opposite to his dad Danny, who's very quiet and reserved and it just makes me smile so hard when i hear him endlessly chatting to Danny without taking a breath and if he thinks his dad isn't listening he yells his name really loud so that danny has to respond. Very funny as often i cant get Danny's full attention so i love it that he demands it. he truly has so much spirit and had us laughing a lot during the day today. It was a really good day today for him, he was really happy for the most of it.

Got to be grateful for that.

The big bummer about today was I missed another assembly that Luke was in. I don't think he was too fussed, but I was. Fortunately a couple of wonderful mums text me some photos of him in his angel outfit, wings and all. Very cute. But from the photo I'm not sure he was super impressed with his costume....


But i think he looks gorgeous and wish I had of been there for it.

Jayden's currently giggling his head off with Layla and what a magical sound that is. I cant think of a sound id rather hear than the laughter of my kids. Just beautiful.


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Thursday, 13 December 2012

Chubby boy

My little man has not stopped eating. From the moment he wakes up till the moment he falls asleep he is asking for food. He even wakes in the night for it although I think I've mentioned that before.
This morning for breakfast he had a weetbix, two bananas, a whole avocado, a piece of toast and two tall glasses of milk. Thats just for breakfast. I would have loved to have distracted him from half of this but with the early morning lunches and getting kids off to school it was not that easy. So as soon as the kids were at school we popped him in the car and went out.

We just have to get him out of the house otherwise he hangs around the kitchen and constantly wants to eat and no toy or suggestions of play will take his mind off the next mouthful.
It's awful and I feel so sorry for him because he never seems to be satisfied and I know it's not him that wants the food but Instead the steroids.

He took his last dose today which was 0.5 mls and I honestly thought by now his appetite would have slowed down but it just seems to be getting worse.
I tried to google a bit of information about it but didn't get much time to find out what I wanted to know, which is if it is normal for his appetite to still be increasing when the dose has dropped. However We have an appointment with Dr Nick tomorrow and am assuming he will clear all that up for me. We have to bring a wee sample in as well to check that his infection did in fact clear up and that's always a difficult task with a two year old.

His little personality has changed with the steroids too and I often feel like I have a different child. I can still see him in there but sometimes he's so angry and frustrated that I feel as if he's not there. It's awful to witness when he's out of control as I know it's not the Jayden we know and no doubt its really awful to be inside his head in those moments too.
He's asleep now and I expect he will wake us again at around 2am as he has been doing for food. Hopefully this won't last long and he can get back to being the little man we know so well.




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Wednesday, 12 December 2012

Edited blog entry

I write in this blog for many reasons. In the beginning it was to let close friends and family know about what was happening with Jayden and I find it an enormously beneficial avenue to vent my feelings. I now know others read it too and thank heavens for them because their messages of encouragement and understanding in the last 8 months has truly helped me get through some of my darkest days. I choose to continue to write in it because of all those reasons and as an important tool to raise awareness to childhood cancer and what its truly like to live with it. I know of a lot of mothers dealing with the very same issues who do the same and it has helped me to read their blogs, as I hope it helps them to read mine, that together we don't have to feel so alone.

I have never intended to hurt or offend people in any way when I am writing my entries and am careful not to include names unless I have asked that person first. Sadly I don't always get that right and was asked to remove my last blog. I didn't remove my feelings about yesterday as they are important to me and very real and something I don't want to dismiss, however I have removed what was asked. I know that even if I didn't think it was offensive but instead how I saw it, doesn't mean it wasn't to someone else, I respect that and am happy to remove what came across that way as that was never my intention.

My entries are never aimed at being about anyone but instead about how I feel and what is going through my mind at the time. When I am able to release them in this blog it helps me immensely. It is never intended to hurt anyone and that is most definitely the trickiest thing about writing this blog. I sometimes get lost in my emotions and don't think carefully enough about how it may be or not be perceived and as a result how it may effect someone else. I will not always get it right and I know that, but if I can fix it, I will, I hope that I have done that in this case.




Tuesday, 11 December 2012

A visit

I didnt have the best experience today and am frustrated with the emotional rollercoaster i seem to be endlessly on. A moment, some words and Im back on the downward spiral to feeling like absolute crap.
The sheer mention of Jaydens condtion or chances of survival are enough to make me feel ill inside. My stomach feels like its turning itself inside out and my chest aches like a knife is slowly working its way in.
It's not that I don't know his chances are slim, because I do. You only have to google his condition and the information on the chances of survival is overwhelmingly dismal. But if I woke up every morning believing he had absolutely no chance then I simply would fall in a heap and be useless to anyone. I have to have a part of me that believes he will make it. That he will live to a ripe old age and be happy, otherwise I wouldn't get through this nightmare.
I visited a person today and whilst I was there she showed me photos of her kids when they were younger and they were beautiful photos but only made me think about Jayden. They were pictures of her kids young and happy and now I know them as all grown up, talk about gut wrenching. I know no one means to upset me when they do things like that as its a perfectly normal thing to do, show someone pictures. And so I never say anything or show my emotion and nod and smile at the correct times. But inside I'm crying. Inside I just want to scream and shout how bloody unfair this is.

I can't put words to it and truly never will find those words as there isn't any that truly fit how awful and sad this is.
I left in the car with Jayden and smiled goodbye but as soon as we got down the road I got so choked up I just wanted to ball my eyes out. I didn't as Jayden was in the car and instead I sucked it up, drove and wished so bad that I didn't feel so damn alone and sad.

My beautiful now fat little man was sitting in the back gibbering away and I looked at him and just can't believe how unfair this all is. He's just so precious to me and so innocent. So very perfect and I love him so very much. Wow this truly hurts.

I just want to get through a day without thinking about it, crying about it and just being able to do a simple thing like 'breathe'.

I'm so over all of it. I spoke with my friend today who's in hospital with her son and I hated that I couldn't help her. Because I know it hurts so much and i wish i could take some of that pain away from her like I wish someone could for me. its such a different world, childhood cancer. There are feelings you never knew existed, pain you thought previously wasn't possible and helplessness that has no end.
This isn't the way it's meant to be, you know that, everyone who's watching knows that but there is nothing anyone can do to change it.

He's asleep in the car, its raining. With every drop that falls I so wish things were different.




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Monday, 10 December 2012

Best gift of all

"What we all want can't be bought from a shelf". That's what a friend wrote to me after my last blog. Those words are so true. Many of us don't want what is for sale in the shops, I know what I want can't be bought. And if it could I would sell everything, work 24hrs a day, what ever it took to buy it. So It makes sense that I found myself wandering the shop yesterday wondering what to buy as all I really want for Xmas is a cure for Jayden.

What I do have for Xmas is the love of my family and that's worth more than any gift you can buy. I guess for me it also reminds me of the love I no longer have and the love I could lose one day. It's a very tricky time of the year for a lot of people for so many different reasons and no matter how difficult I'm finding it I'm determined to make sure my kids remember it as wonderful.

My first mission was to bring Xmas to our house with lights and last night it was beginning to look pretty spectacular. Every year we would load the kids in the car on a beautiful night and drive around to all the houses in Perth that have their front lawns and homes covered in lights. These can be truly spectacular and the kids absolutely love it. This year I decided we would bring that to our own home. So in the last week danny has been on the roof putting up solar Xmas lights I purchased from the shops and last night we were all out there admiring his handy work again. We started it last week and have been out there every night seeing what more we can do and what else should be added. Its a whole family creation and the kids are loving it. obviously it doesn't look anything like the spectacular efforts made by the wonderful people that create the outside of their homes into a xmas wonderland but to the kids its perfect.

It's a small start, but its a start. I know I can't make it perfect but just the simple fact that all five of us will be together is perfect enough. Somedays its hard to remember that and to instead fall into the trap of worrying about the future. It will always be there, the thought and knowledge I may no longer have my precious son with me. I know I have to focus on the fact that I have him with me now and enjoy every second of it. but always in the back of my mind the thought and fear is there.

Today I'm ready to venture the shops again and try to remember that even though I can't buy what I really want for Xmas I do have the love of my family, all five of us at Xmas together and that is truly the best gift of all.




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Xmas shopping

It's not long till Xmas day and I've hardly even started with my Xmas shopping. I use to be more organised and have most of it done by now but not this year. I've managed to get out a couple of times for an hour or so but that was just to have a look at what's out there and now it's time to actually purchase.
I went out this morning with Jayden first but he just wasn't up for spending time in a store, even though it was a toy store. He is most definitely struggling with the extra weight he is carrying and just exhausted with everything I'm sure. And I'm still very worried its something more. We didn't stay out long and came home to see Danny not long after.

I tried a few times to get out on my own later, but Jayden would get very upset with the idea of me leaving so I stayed. Eventually though when he and danny settled in for a good game of cars I was able to slip out.

I went straight to the shop I was at earlier and was convinced I knew what I was going to get or at least look for. But as I walked around, looked at all the toys and tried to decide on what to get I started to feel sad and weary. I felt exhausted in fact. Emotionally exhausted. Trying to keep upbeat because its Xmas and trying to get into the Xmas spirit of buying presents was hard. I wandered the aisles waiting for some inspiration but there wasn't any.
I use to love doing Xmas shopping and really got a kick out of shopping for my kids but this year understandably I know, i feel sad.
I can't help but feel this could be the last time I shop for three children, that this could be Jayden's last Xmas. I know it also couldn't but how many Christmases will I get? I thought about that very question and the answer while I stood there looking at some ridiculously expensive toy. How many christmases with Jayden will I get? Will this be the last? With that thought in my head the spirit of Xmas that I was so desperately trying to achieve slowly disappeared into the back of my mind. I found myself unable to decide on anything and every time I tried to think about what I should get the sadness crept back in. It started to feel like an effort to shop, it was difficult instead of fun like it use to be.

I so desperately want this Xmas to be so perfect and special for Jayden and all of us that its getting me down. The expectations of it being perfect is just too hard. I wish it was just like it was before and I had no expectations. I'm just so worried now that I will live with regret if I don't make every special occasion super special, in particular Christmas. That maybe one day ill look back and wish I'd done it better.

I'm so tired right now and rambling again. My life no matter how hard I try to make it, is no longer normal. Every day is hard. I try to make it easy but there will never be anyway of getting away from the reality of our situation and Xmas is sadly a cruel reminder of our misfortune. It's a reminder my mum is not with us, that my son may not be one day and that life just isn't perfect like we would like it to be.

I'm listening to him snoring as I write in this blog and that sound is so very special. Every noise he makes is special. I soak it all up knowing that I may not hear them one day. The thought of which makes my eyes well up with tears. I have no idea how anyone gets through this. I feel like I'm fumbling through each day hoping that the next will get better. But no matter what i do it doesn't get better or easier it just stays the same.
Truly I wish someone had the answer of how to do this, how to get through life with your child who you love with every inch of your sole knowing that one day you will lose him. It's not how life was meant to be and I hate approaching Xmas with the fear that it could be his last. I hate being scared. Scared of losing my little man and I so wish that pain would go, that I could breath with ease and not worry about what could be.
But saying it and doing it is two very different things.


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Sunday, 9 December 2012

Xmas in Mandurah

We are heading home from an overnight stay in Mandurah. Every year my dads family get together in Mandurah and celebrate Xmas. We weren't sure if we were going to make it this year but thankfully nothing made us have to visit the Hospital like last week and we managed to get there.

It was weird at first to see all my dads family again as this time last year Jayden was showing symptoms of his tumor but we didn't know then what it was that was wrong with him. I remember having the worrying conversations with my uncles and aunties, talking about the unanswered questions from doctors and my gut feeling telling me something was wrong but not knowing what. This time last year was the last time i saw many of them.

At first it was a little confronting and loads of memories flooded back of a time before Jayden was diagnosed. Its always hard to swallow the confronting knowledge that your son is no longer the boy he was health wise and never will be. Obviously we live with it day in and day out but reminders of what life once was is hard. I miss that. I miss all of it.

It was good to be in their company again. Each one of them at separate times spoke with me, cuddled me and expressed their love and hope that Jayden will be ok. So many people in my fathers family have been affected by cancer in some way or another and can sympathise with our situation in some shape or form. They all know that it's different for everyone and none of them would pretend to know how I feel but their very real concern for us made it truly a much needed place to be this weekend.

The highlight of the weekend for the kids was one of my uncles dressing up in a Santa Claus outfit (one of them does this every year) and singing Xmas carols with us all then handed out a stocking full of goodies for each of the kids. Jayden was over the moon. he loved the xmas songs and gave Santa a huge cuddle when he got his stocking. Most definitely a big Santa fan! When Layla and Luke were his age they were terrified of Santa but not Jayden. Takes a lot more than a man in a red suit to scare him, that's for sure.

We are now heading home with bellies full of far too much food but a feeling of thankfulness that we have such a beaut family. For all its ups and downs, trials and tribulations they have always stood fast together. I'm so grateful I have them. These last 8 months have truly put my life in such clear perspective of what's truly important in life and its not what kind of car you drive, house you live in, or clothes you wear but instead the people who love you. It may not necessarily be your family but who ever they are, those that love you are whats important. To put your stamp on this world that says you have loved and have been loved is far more important than how many dollars you have in the bank or how high you climbed the corporate ladder. For me, that's what I think. I know for Jayden he will always know he is loved and will know to love. at least i hope I've got that part right in parenting with all my kids.

It's a few hours later and we are now all in bed. Im laying next to my little man whom took quite sometime to get to sleep tonight. the steroids have been playing havoc with his sleeping and an absolute nightmare with his diet. It has got to the point where we have had to stop him from eating at times and distract him with whatever we can because he simply doesn't stop eating. His tummy is so round that his belly button is poking out like mine did when I was 8 months pregnant. The little lump I was worried about I'm now sure that its some kind of hernia because his poor little tummy has gone from digesting small meals to being filled to the top with enough food for an adult not a two year old.

I never expected it to get this bad and certainly wasn't pre warned it could be this extreme. We have even reduced the dosage as required and that hasn't made a difference if anything it seems to be getting worse.
I just can't wait till he's off them. He finished his antibiotics today which was great, one less drug. It also meant we were able to remove his NG tube. yah! I was so pleased to see that go in the trash.
Now its just the steroids to go. Poor little man, he has put on so much weight and when we went for a walk over to the park today he was really struggling. At least i think its his weight and the steroids. I don't know for sure what it is but I've written about it before, one minute he's ok and the next he's Not. I cant put my finger on it but I know it feels like something is wrong.

When i picked him up today after he'd had enough he snuggled into me so tight. I walked home with him like that, he wasn't going to let go of that tight grip and neither was I. we have many moments like these , that make me feel as if he knows. that we both know. Its as if we both know how special these cuddles are and how much we never want them to end. And i don't. when I'm alone with him I'm so happy but so sad at the same time. I don't ever want to let go of my little man, I never want to have those cuddles taken away from me or the special memories we make every day.

Tonight when I put him to bed I laid next to him with our faces close together and looked at him. he put his hand on my face, looked at me and said "love you much mum". I told him I loved him very much too and gave him the biggest cuddle. its so hard not to cry when I'm with him like that. i hold him like its my last cuddle because i know one day it could be. i love my little man with every inch of my sole and damn this journey is so hard.




With Santa today





In the bath at Mandurah


Reading a book tonight :)

Friday, 7 December 2012

Toy shop

I didn't blog last night as I sat up with my kids instead and watched a movie. It was Friday night so no school the next day which meant a later night than usual was ok. Although with everything that has happened in the last eight months what ever routine we had before has certainly been turned upside down at times. In fact that was one of the hardest things to manage when Jayden returned home, getting back to some kind of routine.
I do manage to get him in bed early every night though and he reminds me if I'm running late. His little body is like a clock that is set at the same time to go to bed every night. If I go past that time he gets overtired and understandably cranky so we try to get it right as much as possible . If of course unexpected visits to the hospital arise like the other night then that just blows it all out again.

Yesterday Jayden was still up and down all day with his energy levels. One minute he will be sprightly and happy and the next he wants to be carried everywhere. I thought id start his day with something he would enjoy and i have to do anyway and took him to a wonderful toy shop. understandably he had a blast and didn't stop talking but after a while he stopped and asked to go home. its as if a switch is turned inside his body and he just has to stop what he's doing. its very unusual but no doubt makes sense when you think about all the drugs that have been put into his little body this year. It worries me though because when he does this I can see in his little face that something is up. He can't articulate it but his facial expression says it all. I wish I knew what it was and I wish I could make it better. All I can do is cuddle him. At these moments while I'm cuddling him, I'm scared. Really scared. When I don't know why he's feeling yuck it frightens me. I don't know what's going on In his little body but my instincts know something is wrong. I squeeze him tight and wish with all my might whatever it is goes away and he can feel better soon.

During our look round at the toy shop a lovely lady approached me and asked me what Jayden's condition was. I really like it when people ask. I much prefer them to say something than stare and say nothing. by saying something it feels like Jayden has been acknowledged that he exists and so does his condition. It was really lovely of her and it turns out her friend is a mother I know from 3b who also has a child with cancer. A baby should I say. Her 6 week old baby was diagnosed with cancer. Truly nothing about childhood cancer makes any sense. I spoke with this lady for sometime and I can't even put it to words how much I truly appreciated her listening to Jayden's story. It really made my day to be heard. Lovely woman.

After she said goodbye I continued to follow Jayden around until I was approached by a guy who asked if I needed any help. He too asked about Jayden and again I had a lengthy conversation about him. It turns out this guy owned the toy
shop we were in and he too had been diagnosed with a brain tumour. Fortunately for him his was benign and was removed. he was so wonderful to talk to and had so much to contribute to the conversation. He told me his sister died of leukaemia at age three and I asked him how his family managed in particular his mother after her death. It is so therapeutic to talk about Jayden to people who want to hear, who ask. i don't think these two people that morning really knew how much that meant to me or how much it helped me get through the day. i am so very grateful to them.

Shortly after we came home from the toyshop and had lunch Jayden fell asleep on my lap. We were sitting out the front on a rickety cane chair that my mum use to sit on in the exact same spot. I sat there with Jayden asleep against me and thought about her. I wondered what she would say to me right at that moment had she be sitting with me. I didn't get an answer but I felt this overwhelming sense of warmth that maybe she was there with us. I hoped she was. I hope that she was with me all through this journey and that if I do lose my son she will be wAiting for him with her arms out wide to embrace him in the biggest, warmest cuddle that she always knew how to do best.




Thursday, 6 December 2012

Flat day

I'm not sure where to start this entry as today was no doubt one of my 'flatter' days. I know I'm going to struggle through the day if it begins with me crying at some point in the morning. Sure enough that's how the day was as that's how it started.

I'm so tired now that I should just go to sleep and believe me I want to but it's just not coming easily tonight. Everyone is asleep as always and I'm the last one to fall.

Jayden's worrying me again, this time it's about the steroids and the dose. He's on 6mls and it just seems very high even though its being tapered off over the next seven days. And He just doesn't seem himself. he has moments where he cant keep walking or playing and just wants me to pick him up. he will be playing one minute happily and the next stop and ask me to take him inside or just carry him. its definitely not usual two year old behaviour but then, he's not your usual two year old. And He has a lump on his tummy at the moment that looks as if something is trying to poke its way out from the inside. It's not red, itchy and its not a bite. Just a lump. I'm a little concerned because he hasn't stopped eating and his poor little tummy is also distended from all the food and now a little lump. When you touch it, it hurts and he was complaining of pain in his lower back area earlier before I discovered the weird lump.

Ironically I discovered it after Nick rang me this afternoon to check that everything was ok and to cancel tomorrows appointment and make it the following Friday.
I could still email him and began to then felt maybe I'm making a big deal out of nothing so I saved it and thought we should wait and see how he wakes tomorrow.

Every time we put medicine into his little body I can't help feel an enormous amount of guilt that I am voluntarily administering stuff that could harm him. I know the benefits out weigh the risks but honestly, it's hard. And I find myself constantly worried about those side effects and if he will have any.

Everything is hard about this. Im so tired of it all right now and would just love to have some time where he is 100% healthy and enjoying being two years old.
It frustrates me so much to watch him constantly struggle.

We took him and the kids to the river this evening to have fish and chips and play in the park. But Jayden wasn't himself, and although you could see in his face he wanted to join in with the other two and have fun his little body just wouldn't allow it. He just wanted to be carried and complained about how cold he was and that he wanted to go home. So he spent most of the time we were there, wrapped up in a towel on my lap.
I'd love to see him running and climbing with the other kids and I know if not for this crappy diagnosis he would be right now.

Everyday is a reminder of his diagnosis, chances and health right now but it's also a reminder of how lucky we are to have him with us. Life as i knew it before was never given a thought of how lucky i am my kids are with me, it was just a given. Now i see it so differently and soak up their every smile, laugh, tear, take the longest cuddles and wish i could make every moment with them last a lifetime.

My little man is sleeping soundly next to me right now and every night I fall asleep watching his little face. His perfect little face. I watch him breathing and his eyes move under his eyelids to dreams and hope that his dreams are happy ones. some say we can see the future in our dreams. i hope Jayden can see his and it be a great one, a long one and a happy, healthy one.:)




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Wednesday, 5 December 2012

Today

Jayden's had his second day of steroids and already showing signs of some of the side effects. A few tantrums today that lasted quite sometime over something nobody knows what about, least of all him. He's also eating more but thats a good thing. I'm so pleased we changed his NG tube as he's not having difficulty eating with this one but he did with the larger one. He still hates it though and wants it out, so do we but a few more days yet. I'm hoping when the antibiotics stop which should be Sunday night , then we might be able to take it out as his steroid dose will be down to 1ml and that should be ok to get him to take by mouth. Need to check with Nick about that when we see him this Friday.

I can only hope the steroids do their job and relieve him from vomiting all the time and more importantly prevent anymore brain damage. Nick suspects he will see more at the next MRI but he can't be certain. I truly hate this guessing game where nobody seems to really know for certain about anything. a lot of medication that has no guarantees or certainties. plenty of nasty side effects with the sentence constantly being said to us "the probable benefits out weigh the risks". With the risks often being extremely nasty. thats got to make any parent nervous and we are no different from the next.

Im pleased we never had to go into hospital today although we have an appointment to see nick on friday, its early so hopefully we will be out before lunch. The kids went back to school today also after two days off still recovering from that nasty virus, I still can't believe I didn't get it and am so damn grateful for that.

So today I tried to get away to do some Xmas shopping in the morning and left Jayden with Danny but it wasn't for long as Jayden doesn't cope very well if I'm away too long. He's getting better but I think with everything that's happened he's just quite a bit shaken up and just doesn't want anyone but me a lot of the time. Which is lovely to be needed so much but difficult when I have two other kids who need me too and other things that he just can't be on my hip for. Going to the toilet is one of them and does he get upset if he can't come too.
Funny little man, I do love him so and when he cried while I took a shower today I told him how I understand how hard it must be for him and that he's been through a lot and he's so brave and clever and how proud I was of him and it wasn't long before he felt better which was also about the same time that he discovered a slater bug on the floor. once he discovered that, whatever it was he was upset about was gone. I'd like to think it was my speech but I think the slater bug won hands down.

I am so very proud of him. he really is my little hero. He's been through so much and he just keeps on going, almost always with a smile.

The other night when he had his CT scan and cried through the whole thing I told him how brave he was and how proud of him I was and he said with his little voice, through tears "me brave mummy". I was so touched by him saying that as it was the first time I've heard him use that word and it is just so damn true. I can't wait till he really knows and understands what that word means and can hold his head up high knowing he is the bravest little man to me and so many others.

We are now on our way to
Danny's mums house as we missed her birthday party last week because everyone was ill.
It's so nice to be able to go somewhere as a family. Boys are arguing in the back and Layla's listening to her iPod - a bit of normal. Even with doing something that's so normal for most families I still sit in the front knowing my son is not your normal two year old. That niggling thought of what the future may hold and the feeling of sadness that comes with it, will always be with me.

Its a few hours later and everyones asleep. We had a lovely time at Danny's parents house and all the kids fell asleep as soon as their heads hit their pillows when we got back. Danny's snoring as loud as can be as per usual and I'm still awake.
The drive home was long but not too long and I sat with Jayden in the back because he was getting tired and grumpy. He chatted away to me all the way home. not everything I could understand but most of it I did. We talked about everything we could see on the road and what we drove past and about dad driving the car. "Me drive one day mum",he said. I felt a deep pain in my heart when he said that and i real need to burst into tears. i didn't and told him he would and he would be a great driver. My heart truly breaks when he says something like that or I see him watching bigger kids riding bikes or kicking a football. I know they are or will be his dreams and it breaks my heart the thought that he may not be able to fulfil them. They are such simple dreams. Not much to ask? No expensive car, house, boat. Just to be able to get old enough to ride a bike, kick a football, run! And drive a car!
I will always keep hoping he will get to fulfil those dreams, and do everything I can to make sure that it happens for he is truly deserving of that. For everything he has been through and every childlike him, they deserve that.

Below is a picture of how he sleeps-sideways across our bed. Beautiful:)



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Tuesday, 4 December 2012

New NG

I had to take Jayden in again today to hospital to get yet another nasal gastric tube put in. Yesterday he went in with dad but the nurse put a size too big in. It might not seem much but for a little nostril hole it was. He came home so upset, drooling at the mouth and he wouldn't eat.
So I explained to him as best I could that if he wants that one out he will still have to have one back in but it will be smaller. He opted for that and today we went in and got the smaller one put in. He's still pretty miserable about having it in but not near as upset about it as yesterday.

So now we are on our way home but he has fallen asleep in the car so I thought I'd pull up under some shade and write in this blog.

He was really keen to come home after the insertion so we didn't hang around afterwards even though I wanted to go back upstairs and visit a very dear friend I've met through all this mess. I've mentioned her before and her son also has ATRT and is currently in Hospital. We popped up to see her and her beautiful boy before Jayden's appointment and stayed for a short while. I stood in the room talking to her and watching her with her gorgeous little man and I thought to myself how even though our sons have the same condition I could never say to her that I know how she feels, because I don't. only she knows that. I wanted to tell her I feel her pain but I couldn't say that either because I don't know what it's like for her. I do however 'get' how painful it is, how gut wrenching it is, how incredibly sad and difficult it is but I would never know how it is for her personally and wouldn't say I did. It was at that point that I truly realised how very lonely this road is. That although you can surround yourself with people who can understand in some way they will never know how you are feeling inside. And that part is difficult because the pain you feel is so enormous and overwhelming, significant and lived 24hours that its hard to imagine you have to keep it to yourself. You can't share it, spread it out, it yours and yours alone.
I wanted so much to take some of it from her and lock it away in a box so she could breath for a while but I can't. I felt so helpless and now know how my family and friends feel when they visited Jayden in hospital. I also know how for them it would almost not seem real because its not happening to them and when they would leave the hospital room and hospital their lives would just continue on where as mine and Jayden's would continue in that hospital room as does this beautiful lady and her son.

It scared me seeing them today and every time I see them because its a reminder of our possible future. I know with every inch of my sole I do not want to be sitting by my child's bed holding his hand through all the shit they have to go through again and I'm so very frighten of that.

She's an amazing lady but I know really at the end of the day she's a MUM and mums will do anything for their children. There's nothing unusual or super human about that. We just do it. We don't sit there thinking will we or won't we, we just do.
I know I wouldn't say "I don't know how she does it?" because I know the answer. She does it because she has to, there is no choice.

We are home now and Jayden has had his medications through his NG and is now watching a movie. It's hot outside but cool in. I have so much to do but I don't want to leave his side so I'm watching one of his favourite movies for the umpteenth time with him. Im thinking about My friend in hospital and I wish she was also home with her little man watching a video on their couch and not in the hospital room.

Below is a photo taken today with his new NG tube and as always, coping with it well.


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Sunday, 2 December 2012

It's Sunday afternoon and I'm sitting out the front of our home in the car, again. Jayden's sound asleep and was so desperately in need of this nap. It's been a really tricky weekend with everyone sick and I'm so glad this awful bug has spared me. It's almost as if it knew, or my body did and just said "no way, can't be having you".
Luke has finally got off the couch, eaten something and now playing outside. He's still very grumpy but managing. Layla is still in bed. Jayden hasn't been himself either and has certainly struggled with the last two days. Not just because he's still felt ill himself but also because he hasn't coped at all with me paying so much attention to the other two. In fact I'd go as far as saying he has hated them being ill. He's so use to being the one that mum fusses over and he most definitely doesn't like to share that attention.

It's been tricky because I've wanted to do stuff for the kids and at times Jayden has been so difficult that I've had to let dad go to them and I stay with Jayden. I even got cranky with Jayden the other day because I was so tired and trying to do everything. He wanted to go in the car so I took him for a drive but I was cross about doing it because I had other stuff I wanted to do. But as we drove along I was reminded of our situation. Every now and then I get a snippet of normal but its usually when I'm flat out trying to juggle a million things so its not a time when I can breath. Anyway this was one of those moments and its not long before I'm back in the land of reality.

We drove along the river and I glanced back at Jayden in his seat and saw him look over to a ferry that was going by. In it were a bunch of school leavers laughing and partying. I instantly felt a wave of sadness come over me. He's looking at them and I'm thinking how he may never get to be one of them. I started to cry, silently and was so disappointed with myself that I got cranky with him earlier. I don't know how long I will have him with me and the other night when he had a seizure I was truly reminded of how quickly this situation can turn. I want every second with him to be perfect but sometimes it just isn't.

When I held him in my arms that night i have truly never been more scared in my life. I sobbed for ages at the hospital. I think to myself sometimes that I am coping, that I'm dealing with the reality of our life but that night it was very clear that no way can anyone prepare or be at peace with this, ever. Peace Is not going to happen. It's going to hurt like hell, be truly devastating beyond words and there is no peace in that.

I watch his every second, worry if he has an odd eye movement anything that's different. He stared at me for a long time today while we sat in the sandpit and that freaked me out but I soon realised he was just really tired. It's truly no easy journey this one and no way of really explaining to people who haven't travelled it. But that's like anything, unless you walk in that very persons shoes you can't know how it feels or what it's like to be in those shoes.

I dropped off some DVDs at the DVD store today and the lady behind the counter asked me how my son was. I burst into tears. It took me by surprise as I thought I was doing ok but clearly I needed to cry. I'm glad she asked, she probably feels bad that she did but I'm glad she did and I told her so. I much rather someone ask than pretend he doesn't exist or this situation isn't happening to us by not saying anything about it.

He's so precious. I watched him today at the park as another boy came over on his bike to play and again I felt sad. Seeing him around other healthy kids just hurts. Knowing my little man may never get to this boys age or learn to ride a bike or anything most boys get to do is just crushing. Sure, he could be the 10% and god I pray for that, it's that very thought that gets me up in the morning and through the day. But I also know there's another number and that's the number that crushes my spirit and sends me into a wave of sadness and awful thoughts.

He's happy right now, sleeping peacefully in the car. It's been a difficult weekend but I wouldn't swap it for anything. All my kids are home, all of them are with me and that truly is all that matters.




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Saturday, 1 December 2012

Nasty bugs

This would have to be the worst gastro bug that has ever passed through our house. Both Layla and Luke were still very ill till late last night. They had woken yesterday morning ok and We had thought they were over it but by mid morning they both vomited again and slept for the rest of the day. They both complained of major headaches, had high temperatures and very upset so it makes perfect sense that Jayden was also so unwell with it. but at least i can know it will run its course and that's a great thing. I wish I knew that about Jayden's cancer.

He's much better today, tired but happy. He vomited first thing this morning and the steroids we have to give him have been virtually impossible to get down. Not only do they taste revolting but Jayden is incredibly good at not taking medication. He has the amazingly efficient way of stopping it going down and spitting it out. It looks as if he puts a plug in the back of his throat and it just spills out the side of his mouth. Very annoying because we never know how much has actually gone down, if any.
The antibiotics for his urine infection are even worse. Both Danny and I tasted it and truly it's so revolting that we would both struggle to take it. So now we are left with two very important drugs he has to take and neither is going down. No idea what to do next except keep on trying.

Layla's woken and is still unwell this morning. Jayden had woken a couple of hours earlier, 5:15am to be exact. Love these early mornings now though. Am so very glad we are waking in our home and not in a hospital.




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Friday, 30 November 2012

Virus

For the past five hours Layla, danny and Luke have been vomiting. Proof that Jayden's episode was indeed a gastro virus. I've never been so happy about knowing my kids have a gastro bug. I know I'll probably be hit with it later as well so am quickly blogging now because they have all finally fallen asleep.

Nick phoned me earlier with the results of the EEG as he didn't have them when I went in with Jayden this morning. He told me tonight that they didn't find anything that showed seizure activity so they have no idea why he had them. There is the possibility that the virus bought on the seizures but there is no way of really knowing but at least Jayden doesn't have to take more medication and that's a great thing. They did however find in the EEG abnormality in the back part of the brain where his tumour was, which would agree with the recent findings of brain damage their in the MRI.

I'm so relieved and can't believe I am thinking how good it is that Jayden just has brain damage?? That's what life is like for us now because we know all the other possibilities and things that can happen are so much worse. So far, it's just brain damage. Unbelievable. What a journey? Truly, what an emotional roller coaster? One minute I'm thinking my son has died inside, the next I'm witnessing him in pain that I cant stop, the next he's ok and just has brain damage, its truly insane. I honestly don't know how we are all doing this. But what I do know, is I wish all I had to worry about was a gastro bug going through our household. Now That, would just be bliss.

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Thursday, 29 November 2012

Results from CT and EEG

We had the worst experience last night with getting a line into Jayden for the Ct scan. They had two goes at it and failed. During those 'goes' the doctor inserted the needle and proceeded to take forever to find a vein all the while Jayden is screaming his head off. During the first go Jayden's eyes were blinking weirdly while he was screaming and his chin had a twitch. It didn't last long but was enough to send danny and I into another spin and I found myself sobbing and told the doctor who was still poking around to stop, scooping him up in my arms and holding him so tight. I DID NOT want to put him back on the bed to be butchered by this doctor. I truly have never felt more traumatised and I can't possibly even begin to imagine how traumatised Jayden was. The nurses and doctors gave their big pep talk about how important it was to get this line in an eventually I had to give him up to them to have another go. The doctor told me I should probably leave and stupidly took his advice, only to hear Jayden's screams go on for ages down the hall. Eventually the doctor surfaced saying he couldn't get a line. I've never been more pissed off and stressed that my poor child had to endure that event. He was sound asleep and woken to be poked and prodded, pinned down and let scream. It was truly awful and danny was extremely distressed after it as well. We then had to do the CT without the line. Which was fine they just couldn't get a contrast. I wish we had that option in the first place.

I didn't get to speak to a doctor last night after the CT as it was after midnight when we got back to the room and we were both shattered.
We did briefly speak to the doctor at the CT scan and he did say what he can see so far is ok. That was enough to get me off to sleep and just hope they didnt find anything they didn't expect to later.

We have since seen the doctors this morning and they don't know why this has happened. apparently nothing on the scan indicates an explanation and Dr Nick said its unusual in children that have tumours in the posterior fossa like Jayden to have seizures. he's booked jayden in for anEEG this afternoon to get more information.

The seizures Would have to have been one of the scariest things I have witnessed so far and I truly thought I had lost him. But now he is in my arms and i couldn't be more grateful.

It's a couple hours later and he's just finished his EEG. we are back in his room. He did really well. He cried throughout the whole process of setting up all the wires but slept during the examination.






Its another couple of hours later and I thought we would have got the results back today but we haven't. We are now on our way home and have to return tomorrow to find out results and what is going to happen next.
Dr Nick did get the results back from the urine test Jayden did yesterday though and apparently on top of everything else he has a urine infection as well. He truly doesn't seem to get a decent brake and I so wish for him that he would.