Wednesday, 27 February 2013

Moments


I woke up to the sound of my beautiful little mans voice in my ear " mummy, get up". I turned to face him, give him a big cuddle and with his hand on the back of his head he said "lots of hair mum". Yes, beautiful little man he does have lots of hair. He so knows how to make me smile. He keeps me smiling all day. When he's in a room he lights it up. His sheer presents brings me happiness. That's what I focus on to get me through the day.

At this very moment he's watching "Horton hears a who". For the tenth time. Definitely one of my favourites. One of the many joys of being a parent is to watch fabulous kids flicks like these with my kids.

It's morning and I've woken up feeling better. I always do start the day off ok. Just waking up with my little man near me always starts my day with a smile. Unfortunately behind that smile I'm pushing back the thoughts of not seeing that smile one day. I push them back in my mind for if I don't I fall apart. We go to the kitchen and are usually the only ones up at this time but today so is Layla and Danny.
We all had breakfast together then danny went off to work. Luke's up now and time to get organised for school.

An hour or so later and kids are at school and Jayden and I are visiting our Italian neighbours, beautiful people. Love them dearly.



I'm thinking about yesterday's blog and how I was feeling then. After seeing the councillor I think I actually felt worse than I went in. But I think that was what was meant to happen. She talked to me about how devastating our situation is how she can't put words to how awful it is because there aren't any and reminded me how normal it is for me to struggle on a daily basis. The result was I left feeling so bad and allowed myself to feel like that. A huge cry last night and today I'm able to wake up feeling like I actually did let go of some emotions, enough to get me through today. I will return to her as i didn't realise at the time, but do now, it actually did help.

I often spend so much time writing in my blog trying to get across how devastating this situation is, how painfully sad it is. But there really is no way of letting anyone know what this is truly like to live without them going through this themselves. . Yesterday's session also clarified that. I could use all the words in the English dictionary to try and describe this but none of them can put another person in this place of awareness of what it's 'really like' . And no one would want to know.

I want people to know, so badly. In the hope that if I do that I won't feel so alone in it. But I can't. It's not possible. She told me yesterday to just surround myself with buffers, meaning not people that know what u are going through but those that are willing to listen. To accept that this is my life and get through it as best I can even if that means minute by minute.

I took Jayden to the chemist today to pick up a prescription and i told him we were visiting the lovely girls there that like him a lot. he said "girls like me mum". they sure do i replied. they are wonderful women there and we love them dearly. Had a lovely chat while we were there and Jayden played with the toys with the wonderful "girls".



After that visit we went to the park. Down there we played on the playground and just messed about. Eventually we sat down, Jayden on my lap, playing on my phone together, a cool breeze blowing. I thought to myself at that very moment, life could not get better than this moment. Snuggled with my little man, under a tree, sharing a moment in time that I wish could last an eternity. It will in my memory. These are the moments I live for. No words in the dictionary can truly give that moment justice either. Just had to be there. Fortunately for us, we were. Together.



Councillor

I went and saw a councillor today. I'm not sure what exactly I expected to come of it but whatever it was, I realised today, it's unachievable.

Maybe I thought she'd have a miracle for me. Someway that would make my life a little less painful. But there isn't one. That's what I did discover today. That I just have to keep getting up every morning, keep going through the motions of my day, keep being there for my kids, keep sucking up the tears, keep hiding my constant fear, worry and overwhelming sadness and just keep moving.
These are the shoes I walk in and there's nothing I or anyone else can do about it.

It makes me sad. It made me sad sitting in front of her today realising there is no fix. Not that I thought there would be but I thought it may have helped somewhat.

I'm lost for words right at this moment to truly describe how i feel. I'm not sure there is any.

The moment we walked through the doors at PMH almost twelve months ago our lives changed. They changed dramatically and they changed forever. Not just for a week, a month, duration of a sickness but, forever. Forever.

It's hard to fathom that we will never be the family we once were and I think a big part of me is grieving that. Grieving for my healthy boy. Grieving for the mum I once was. We have all been affected by this nightmare and together, changed forever.

I drove home from my session today feeling no different to when I arrived. I hoped that I would feel a little different, maybe relieved somewhat that I got some emotions out. At the very least had some time to talk to someone who understood somewhat and a little less emotionally drained. She did understand in that she's heard it all before but she couldn't change it for me, obviously and nothing she told me was anything different to what I'm doing now.

I came home to my smiling little man and felt sorry that I lost that hour talking when I could have been with him. He was so happy to see me and even more happier to see his brother walking in behind me whom I collected from school on the way.
The two of them shot off together immediately and were inseparable for the rest of the evening.

It's a few hours later and I'm laying between my beautiful boys.
I've had my cry with danny as he walked in earlier and now I'm feeling so tired. I'm truly exhausted with this nightmare. the emotions, the sadness, the spending each and everyday containing those feelings and I just want my old life back.

My beautiful little man is sleeping, looking peaceful as always. I often look at him and just can't believe this has happened to him. That we have watched him go through so much.

I need to stop writing this entry, I need to sleep and I need to breathe. Not having the best day today.




Above is a picture of Jayden at our wonderful neighbours house this morning.
And below is him tonight before bed with his baby.



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Monday, 25 February 2013

A card

Before i went to bed last night I put some clothes away and whilst putting Jayden's away I found a card that a relative had given us when Jayden was born. I held it in my hands and read it and remembered back to the time when we received it. It reads "may you have a wonderful life with your new baby boy". Back then none of us would have any idea of what was to be in our lives with our new precious baby boy. We had no idea of the life we would enter on march 7th 2012 when Jayden was 22 months old. No idea of the pain we would feel, the heartbreak, anxiety and sheer sadness that would become our lives.
I held it in my hands as those thoughts went through my mind and I cried. I remembered how easy life was back then and how we had so many hopes and dreams for our new little man. I wished so much we were back there and this pain we live with now, agonising over our sons future were gone.
I carefully placed the card back in the draw and walked into the kitchen feeling numb. I sat on my own whilst everyone in the house was asleep and just sat. the sadness can be so overwhelming that numbness takes it place and thinking becomes truly hard. i couldn't write in this blog and i didn't want to. I just desperately wanted to stop hurting.
I took a women's magazine from the office and decided to flick through and try and focus on what the rich and famous are stressing about these days. I tried to not think for a while. I spoke to my husband about my lonely moment last night and he asked me "were you able to stop thinking for a while", "no" was my answer. What I wouldn't give just to breathe and not worry. Not fear for what's around the corner and not hurt. I love my children more than anything and my god it hurts to be living this life now.
Sometimes I get moments like this afternoon as I push Jayden in his little car along the footpath and I think" this is great, I'm pushing my beautiful son in his car, he's happy, smiling, I have to love this moment". And I do but the darkness of the fear and worry always overshadows those feelings.
Jayden didn't vomit yesterday but we thought he was going too not long after he finished his dinner. he went through the motions and with it his appearance looked odd for a second, like he was going to pass out. He didn't and he was fine shortly after but I emailed Dr Nick with my concerns all the same. He replied saying to keep an eye on him. Which of course, goes without saying as there is very little else I do.
We all went to the park this afternoon after school and as always it was great to be together. When we were there I saw a person I knew, not a close friend but someone that works in the area. They approached me and asked how I was. Then stood with me and listened to my answer and we talked about the whole scenario and I really appreciated her asking and wanting to hear. I kept expecting her to say she had to go somewhere or give some other excuse to leave so she didn't have to hear the hard stuff. She didn't. She went on to tell me that she understood in someways how many people would rather say nothing to me than say the wrong thing. Her and her husband tried for years to have children and they were never able to. Difficult times and like all difficult times true friends shine and those that aren't, fade.
She gave me a hug and I thanked her for listening and we parted company.
I walked over to join danny and the kids and gave danny a big hug along with each of my kids. I love my family so much and I am so very grateful to have them.
Later when the kids were busy at home I talked to him about the conversation that I had with this woman. Her heartbreak was because she never was able to have children. I am so grateful I was able to. I'm so grateful I was able to hold each and everyone of my children in my arms when they were born, look into their beautiful faces and thank the heavens for being so blessed. i would not swap this heartache i experience everyday for never having being able to have my children.

tonight I go to sleep knowing that even though with every inch of my being I want my sons health back, I would never ever swap my life as it is now for never having him at all. And i say that with the heaviest heart for i know how badly i want him well forever and how very much it hurts to live like this but, i am lucky. Lucky to have my little man In my life. Lucky to have my family. lucky to have all my children.

They are truly what I live for.
















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Saturday, 23 February 2013

Vomiting again :(

Kids woke up early for the first time in a few days now and it was nice to get back into the early morning rises again.
They all woke happy, it was a beautiful morning outside, so we all got in the car and went down to Fremantle to the big park on the esplanade and planned to have breakfast at the cafe there.

We left dad asleep as he worked last night and no doubt very tired.
The kids love this park and at 8 am in the morning they had it almost, all to themselves.



we ordered breakfast at the cafe and had a cup of coffee each. (Milk for kids, real coffee for me).
As I'm writing this entry I feel so anxious. Ever since this morning which I'm about to talk about my anxiety has kicked into high gear and as the day has progressed it's got worse.

While we were eating breakfast this morning Jayden was half way through his when out of no where he threw up. It wasn't just one of those little ones but an "empty the entire contents of your stomach " one. I busily cleaned it up as I didn't want the waiting staff to do it and i knew whilst I was busy I wouldn't think about what this could mean. Once I finished, Layla and luke went back to playing on the playground and Jayden and I went to fetch a change of clothes for him from the car, which was parked close by. I had Jayden in my arms as i walked to the car and with all my might i held back tears that so desperately wanted to be shed. At this moment I was worried, scared, anxious and very sad. i love my little man so much and i never, ever want this cancer to return and I'm scared as hell of it doing so. On the walk to the car i snuggled him as tight as he let me and said to him " i love you my gorgeous little man" and he said "i know". A tear did get shed then but I didn't let him see it. I put him in his new clothes and talked to him whilst i was doing it but all the while feeling so damn scared.

we joined Layla and Luke at the playground and I watched Jayden more closely than ever. ever since that incident I have watched him even closer and i haven't stopped.

At one point I was worried his speech was slurring and i had to ask danny to listen to him carefully as well in case I was panicking over nothing. How can I not panic?

This is a nightmare. there truly is no other word for it, except you don't get to wake up from this one. Every second of everyday you live it. It's truly crap.

My heart is up in my throat and I'm so damn scared.

I friend of mine that I met in the beginning of this mess has had very sad news about her most gorgeous, precious child. And that truly breaks my heart. I feel for her beyond words. I cannot comprehend how painful her life is right now but what I wouldn't do to change it for her.

There is so many parents out their that are living this nightmare with their children and its just so unfair.

All around us it seems to be happening and it feels as if the walls are coming in closer.

I don't know how anyone does this as I haven't a clue. My chest is so tight with anxiety and worry and all I want to do is breathe.

I had to go out this afternoon and the further I had to drive away from my home where Jayden and the rest of the family was the more anxious and frighten I became. I hate being away from him, even for a little while.

When I was done I raced back and when I got home danny text to say they were over at the oval. I raced over there to find them all happy in the park. They all saw me except Jayden and I yelled out to him from the top of the oval "hey gorgeous" he looked up and yelled back exactly the way I said it "hey gorgeous". We all laughed.

My little man, he really is the centre of our universe. The piece of puzzle that makes our family whole. I love my little man so much.





Thursday, 21 February 2013


One of the hardest things about this whole nightmare is from the moment it started our lives will never be the same while everyone around us continues as per normal. I spend my days and nights worrying my sons cancer may come back while everyone else gets about their lives as per normal. i even had a friend say once "well i will continue with my life and when you need me I'm here". It was meant to be a kind thing to say I know but it hurts.

I ran into and old friend from school at the shops the other day and he went into full swing about his divorce, juggling kids and how depressing that all was. He never once asked about Jayden. He was clearly consumed with his life and worries.

I walked away from him after listening to him and wishing him well and inside felt sad for him. Not because of his situation but how sad it is that he doesn't realise how lucky he is. Lucky that he has two healthy children, lucky that even though they don't live with him every day he doesn't have to worry that he may lose one of them forever one day.

I also realised that to him his life is sad, that his concerns and worries are very real to him but as I stepped into my car I wished they were mine. I love my husband dearly and wouldn't ever want to separate from him but I would swap places with this man in an instant if it meant i would have my healthy boy back.
I would do anything to take away the endless pain of the thought of losing him one day. Anything to stop this awful nightmare.

It's 2:40 in the morning and I can't sleep. Jayden hasn't been having a good sleep either and has been waking intermittently. I've always had problems getting back to sleep when I've been woken as it switches on my mind to Jayden and its almost impossible to turn off.

He has Luke's virus which we expected to happen. I hate seeing him unwell. I always feel like its so much more unfair for him because surely he's had his fair share of illness already.

So now I'm sitting on the toilet so I don't wake anyone and writing in this blog. From the moment I find myself awake my mind is thinking, worrying, playing past events in my head, scared of the future and its hard to slow it down in order to sleep again.
I can hear my kids sleeping. my neck hurts, no idea why. I guess I'm just tired and should be sleeping.

There's so much going on in my mind yet I know I've written it so many times before. Nothing changes. There is no end to this nightmare, not for anyone who lives it. Just a day to day learning somehow to live with it. Enjoying every moment I have with my kids and hoping with all my might those moments won't ever be taken away from me. Existing. Loving my children, hearing them, being with them and hoping I have a lifetime with them.

Everyday spent keeping it together so they don't see the hurt that lives inside me. The fear. The worry.

Everyday spent hoping and praying my son gets his miracle and he have the long life he deserves.

Everyday feels so long.





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Wednesday, 20 February 2013

The past two days

Luke's been home from school these last couple of days because he's had a virus, high temps, sore throat etc. I took him to the doctors yesterday just to rule out tonsillitis as he use to get it a lot when he was little, but thankfully his tonsils are fine. She told me to keep him out of school however until he didn't have a temperature for 24 hours otherwise he's contagious. So today even though he was feeling better and happy, we kept him home.

It Has been really nice having him home, Jayden has especially loved it. They spent both days hanging out, watching videos and everywhere Luke was, Jayden was. He's so happy to be in his company. Even when they are not directly playing with each other they are always sitting near each other. It's very sweet. I love that they have each other.

So back into school again tomorrow. It's been nice not going in these last couple of days as Layla likes to go by herself now in the mornings but I still pick her up at the end of the day.

The boys have also been sleeping in the last two mornings, we all did on Tuesday. Which is a first! Layla was even late for school and we just live up the road.

I woke this morning with Jayden's face squished against mine and the sound of him breathing along with Luke lightly snoring. It's so nice to wake before them and watch and listen to them sleep. Precious. I remained there listening to them until they woke.

I helped Layla get organised for school again this morning and she went off on her own. I Hate that she's growing up so fast. Luke, Jayden and I then packed some food and headed to the park.

It was lovely when we got there as no one else was there and the peace was beautiful. A few others arrived shortly after and that was fine too. I find myself so super protective over Jayden now and when a little girl stopped him from walking along a brick wall that he doesn't have the balancing skills to step down from to get out of her way I jumped up to retrieve him. He was coping, as he always does but I panicked that he would fall. I felt my heart race and my mother instinct to protect him go into top gear. We went home shortly after and I discussed my feelings about it with Danny. He agreed that he too has become super sensitive and protective when it comes to Jayden. We can't help it. I guess we have seen him go through so much already that every inch of our being does not want to see him go through anything at all that is even remotely uncomfortable again. It's hard not to feel that way.

Not long after that I had an appointment for a mammogram and ultrasound. They couldn't do the mammogram as I had one less than twelve months ago but did the ultrasound. I'm getting it all checked out as I'm constantly worried something else bad is going to happen and the amount of times I have been to the doctors for myself about concerns is quite a few now. I recently received an email from a friend who explained it as post traumatic stress syndrome. I definitely have something going on. I spoke with a counsellor today and am due to see her next week.

After all that I came home to my boys so happy as always to see me, I just love walking through our front door to that welcome. Just gorgeous. They helped me bring in the groceries that I had stopped to pick up on the way home, well helped empty them and start eating them anyway.

Shortly after, it was time to get Layla and I walked over to the school. I sat on the bench outside her classroom and watched the other mums chatting with each other and the kids milling around. Layla's class had been kept back a bit so most of the kids were out running about finding their parents. This scene never stops hurting.

They eventually emerged and I waited as Layla got her bag and things. A friends husband came up to me then and said "hi, how are you?" And gave me a hug. You can never underestimate the importance of a hug. When someone gives me a hug I know they care and are not scared to ask the tricky questions because they are not scared to hear the answers. I have heard people say I didn't want to talk to you about things because I didn't want to upset you?? Sadly that's exactly what I want to do and nothing can make me more upset than I already live on a day to day basis. Just because I don't get to talk about it doesn't make it better? In fact, worse. The need to talk about it, cry about it is huge. We pay someone to listen to that because people find it too hard to go there with each other. It's insane really.

I'm laying in bed now between both my boys. They are both fast asleep.
I'm thinking of a conversation I had with the lovely lady that did my ultrasound. We talked about Jayden of course. She was so kind. She said to me "leisl you have so much joy in your life as you know how precious everyday is and how every moment counts so many people don't have that knowledge and never will".
I do know how important each day is, yes. And I do know how precious each moment I share with my children is. But I so wish I didn't.




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Monday, 18 February 2013

I woke this morning to the sound of both my boys snoring. Wonderful. I rarely wake before them but the busy day they had yesterday caused them to sleep in this morning until 7:00am, fabulous.

It was the usual start to a Monday morning, lunches, uniforms and the mayhem of getting ready for school. I like this business because it keeps me from thinking. Thinking about Jayden. I'm so focused getting the kids organised that I'm able to give my mind a rest.

Unfortunately as soon as its done and I'm walking to school with my kids, its there again. Watching all the mums with their children, knowing they don't have what I have in my mind. Wishing I were them.

An incident with a mum in the classroom and I'm a bucket of tears again at home. Danny and I talked about how we spend our days fighting back the thoughts and feeling that lie deep inside just so we can get through the day. It's like a constant fight with your emotions. Somedays you win that fight but most days you lose.

Today I decided to get focused yet again and chase up a councillor. its clear I'm not coping although I can't imagine how anyone does in these circumstances. I also emailed Dr Goldman about my concerns from the seminar and emailed Dr Nick also.

There's other things I want to try to help me cope that people have suggested but its just finding the time. Really appreciate all the suggestions and am slowly following up on them.

Jayden and I went to Gymbaroo today but almost didn't as my good friend and neighbour couldn't go. Jayden was not happy going without her and i have to say i was a little nervous myself. but we went and we had a good time. I had to focus on being there with Jayden and not look at everyone else because when i did it made me sad. At times i watched the other kids his same age steady on their feet, running no problems and its a big reminder of jaydens condition. I know that being unsteady on his feet is the least of our worries but it still pains me to see him struggle. Although in saying that he had no problems getting around in the gym and putting 100% effort into everything. He made me laugh so many times with his enthusiasm and determination to keep going after every fall or slip. True soldier.

We came home one hour later and grabbed a coffee on the way. Chilled out with some lunch and a bit if TV and then he helped me fix dinner. He's such beautiful company and I just love him near me. He oozes life and I just love being in his space. It's my medicine to get through this nightmare.

Luke came home from school unwell. I didn't realise he was so ill until I took his temperature and it was high. Gave him some Panadol and sat with him in front of the TV. Poor little mite. He gets so forgotten in this whole mess and I can't believe it took me so long to realise he was unwell. A day home from school for him tomorrow and I'm glad of that. Miss them so much when they are not here.

I went for a walk today and its the first bit if exercise I've done in sometime. Definitely needed and it helped a lot. Dr Nick rang shortly after I came back and I have to say it was the best conversation I have ever had with him. Truly needed it. He assured me not too worry about Luke and just made me feel like he understood my concerns and it was just really nice to talk to someone I think.
Most days I don't speak to anyone except danny can be very lonely especially when Danny is such a man of few words. And I mean, few words.

Everyone is now all in bed tucked up and asleep and I'm about to join them. A very dear friend of mine emailed me the other day and wrote that someone had told her once that cancer doesn't take a day off. No truer words have been written to me. There is no day off in this journey. No break, no length of time where you aren't hoping, praying that Jayden will be ok. No length of time where we aren't worried his cancer will return. No real way of knowing how hard this is unless you walk these shoes.

Today I can go to sleep with an easier mind but my heavy heart will always remain.




Sunday, 17 February 2013

Jayden's been well and happy these past few days. No vomiting but am always scared to mention that just in case. He slept in this morning until 7:00 am which is huge considering he usually loves the early morning rises.
We had planned to go to Danny's parents house for breakfast as well so of all the mornings to sleep in it was today. But that was ok as we still managed to get there early and it was lovely. Lovely to be with family and lovely to get out of the house together, as a family.
I haven't got much to write today, feeling like I need a good sleep. Boys are asleep in bed, including Danny and Layla is up watching her tv program. Her and I will be in bed shortly.
I'm downloading photos off my phone at the moment as I can't use it properly due to all the storage space thousands of photos take up so time to get them off.
Not a big fan of technology as not the best at navigating my way through it all so when I'm downloading photos and then wiping them off my phone I have to say I'm a little nervous that somewhere in the process I may lose them. And that would be a tragedy. Hopefully I will get it right.
I take pictures everyday of my beautiful little man and his brother and sister and a video everyday. Want to capture every moment and the thought of losing those memories is tragic.

I have to say I'm a little numb this evening. Still digesting Thursday nights seminar. Not really knowing what to do with all those thoughts. More stuff I cant truly share with anyone for when I do, they don't understand. How can they? Our life is so overwhelming how could anybody possibly get it that isn't living it.

Ok, now i feel like I'm rambling. am very tired and what i should be doing is sleeping. Will do that now. Cuddle up to my little man and sleep. Hopefully it comes easily.



These photos are of Jayden and his baby at Nannas house.




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Friday, 15 February 2013

Whenever I have a really bad day I try to wake up the following day with a more positive frame of mind. It's hard but what better way to start the day than to get my kids and myself outside the house and into some outside air. I took all three to the river this morning, straight after breakfast. It was so nice to be outside not doing anything except spending time with my children and feeling the breeze.










Being with my children and enjoying the moment can sometimes be the most challenging thing for me to do but when I accomplish it, it's the most rewarding, beautiful, and comforting thing I can do.

Seminar



Lately I've felt like I'm in a constant state of anxiety and find myself walking away from every conversation i have with anyone, paranoid that I said the wrong thing, bored them with my problems or bought them down from my demeanour. I feel like at times Im going crazy. Awful.

Last night danny and I went to a seminar on brain cancer set up and organised by the Telethon Adventurers. From the moment we walked into the building I felt my anxiety set in and as we approached the crowded room I felt like I was in a state of panic. On the outside I smiled and said hello to people I knew from the ward but on the inside my anxiety was at an all time high. I wanted to run out of there and get in the car and go home. Of course I didn't and was thoroughly relieved to be sitting in a seat watching the presentation rather than talking to anyone. Stupid I'm sure, as I was amongst people who were also parents of children with cancer but I couldn't stop it happening.

The presentations by all the specialist were confronting but informative and even though it was difficult to watch, listen and take in, I'm glad we went.

We were informed that childhood cancer is rare. 1in 300. That childhood cancer is nothing like adult cancers. It's treated different, the reasons for getting it are different and so on. Adults don't get childhood cancers and children don't get adult cancers.
They are completely separate and really should have a different name to save confusion.

A lot of scans were shown, diagrams and graphs of statistics. Line graphs of survivors, often measured in months rather than years. each line on the graphs ended at points and left you wondering, what happened after that? Although, deep down knowing that answer. The knowledge presented to us was a reminder of what we are facing. it was very, very sad.

There was good news with the studies and the progress they are making. Even better news that they are now going to collaborate with all their studies, do the same trials etc and hopefully reduce the time to making new discoveries of new treatments. Lets hope so.

They also informed us of new discoveries through gene research on childhood cancers. that childhood cancers are (now i know I'll probably repeat this not quite the same way i heard it but i will give it my best shot), one specialist talked about the causes of childhood cancer that with new gene research it comes down to genes. Not environment, not diet, not whether or not I immunised my child and whether I took enough folate when I was pregnant or how old I was. None of that. None of the things that people have suggested to me in the past. That was really comforting to me that it wasn't anything I or we did. Deep inside I knew it wasn't anything we did, but I still needed to hear it from someone who studies this topic, lives and breathes it and knows what he's talking about. I walked away feeling 100% confident that it wasn't anything we did or didn't do and that was a good thing. This specialist went on to say however that they have also discovered correlations between childhood cancer and birth defects. That their findings show children with cancer often have a sibling with a birth defect. And that sibling with the birth defect has a higher risk of getting cancer also.
That may not mean much to most but to us that information hit us like a tonne of bricks. Luke, Jayden's brother was born with a birth defect. Enough said.











- Theres a saying that goes, "you never really know what you have got until its gone". knowing we could lose Jayden makes us realise how precious he is. His every smile, laugh, tear, cuddle, step he takes, word he speaks is more special than ever before. being in his company, sharing his life is pure joy.
I now look at my other son in the same way. Although I have always treasured all my children deeply. I now treasure them even more.
now I know I'll watch luke like a hawk like I do Jayden for any signs of anything. That although I was vigilant before I am even more so now and for Layla too.

I'm exhausted. Tired of being worried. Tired of being sad. Tired of getting up everyday and getting through the day. I love my kids so much and I'm hurting so bad right now it sucks.




Tuesday, 12 February 2013

The morning


Jayden keeps scratching the back of his head and I don't know why. It's never bothered him before but in the past week it has.

He's still waking early as well. The last couple of days it's been 4:00 am. But fortunately this morning I was able to get him back to sleep till 6am. Yah. He's now waiting for danny to make his cup of tea. Got it, drinking it, watching TV.



He hasn't vomited in a while but his balance seems to be quite off lately. I don't know if its because he's pushing himself harder or if its getting worse.
Dr Nick told us when we saw him last that it will never be that good but with time it may improve some. Hope so for his sake as his mind wants to do so much that his body can't keep up with. He's not worried though, I do that for him. Beautiful little man.

I didn't write about yesterday in my last blog just a poem. He did have a good day. Jayden always does. He's the little soldier amongst us that just keeps on going. It's me that falls apart. His little smile and voice in the morning never fails to lift me up and smile though.
His hair is getting so long now that when he wakes he has it sticking up everywhere from where he slept. Love it.


He had a great day yesterday and I know he will have a great one today.
He has such a beautiful spirit, a zest for life and loves it. So proud of my little man.



When you ask me...

I wrote this poem a while ago and thought about it today after an encounter with an old friend. I didn't think I had finished it but I did, just never posted it. I'm going to today.


'WHEN YOU ASK ME HOW I AM'

When you ask me how I am,
Do you really want to know?
When you ask me how I'm coping,
Do you really want to know?

Do you want to know I cry myself to sleep at night, can't breath properly from all the pain?
That no matter what I do or say, I feel that it's all in vain.

When you ask me how I am, do you really want to know?
That I may look like all is fine, but I put on a marvellous show.

When you ask me how's my day been?
Do you really want to know?
Do you want to know the pain, the sadness, to what lengths we have to go?

Do you Really want to know?
For if I tell you how I really am will you listen or walk away?
Or stand there wishing you'd never asked, but nod politely anyway.

Ask yourself before you ask me, do you really want to hear?
Do you really want to know the truth? The pain, the suffering and the fear?

I want to tell you, don't get me wrong, I want you to know how I feel, I do.
But do you want to hear it?
Or would you prefer I say,
"I'm fine thanks, how are you?"





Sunday, 10 February 2013

Yesterday and today

YESTERDAY

There's a ceiling fan above our bed, the sound of which we think helps Jayden sleep. It blocks out the surrounding noises and goings on in the day and it kinda sounds like the motor running of our car. So when we transfer him from the car to this room he always seems to sleep better when it's on. And it's hot so the fan produces a welcome breeze in the room.
Every time I turn it on though it reminds me of my mum. It was summer when she passed away and her last days were spent in this very same room. With the fan on. I remember sitting by her bed after she had passed and all I could hear was the sound of the fan, nothing else but that fan ticking away as it went around.
I don't know what point I'm making, if at all, but merely recollecting a memory. A sad one but a very vivid one when I turn on the fan. Some would think it weird that we sleep in the room that my mother passed away but I find it comforting. In many ways I feel she's here with us. And when I turn on the fan for my son I think of her and hope she is near him as he sleeps.

He's sleeping now, having his daytime nap and as always he looks so peaceful. I like to think my mum is with him, watching over him, resting with him. She would have loved him if she were alive now, I know it. Just spoilt him rotten and loved him to bits.

He's exhausted now as We spent the morning at my sisters place. Now that she has moved down from Geraldton we get to see her more often which is fabulous. Love her dearly and so does Jayden. He did a lot of playing and was entertained thoroughly by my her, something my mum would have done . We are home now and I'm about to do something with my other two. I try to spend time with them on their own but its difficult as Jayden does not cope very well when I'm not with him. I was told that he will experience separation anxiety from me for quite sometime because of what he's been through. He's not the only one. I think I experience it as well when I'm away from him. While he sleeps though it gives me an opportunity to be with the other two.

TODAY

Jayden went to his first class of Gymbaroo today! He was so excited to be around other kids, listen to music and climb on the indoor playground. So beautiful to see his little face beaming with smiles! Just precious.

We went with our neighbour and her gorgeous child and had a blast. Jayden couldn't stop yelling out to her to watch him and tried everything out. He is so different to my other two in he shows no fear, loves to be around other kids and the busier the better. Funny little man. It was so nice to see him so happy. Of course he fell asleep on the way home and is sleeping next to me as I write. I should be sleeping too as he was up at 4:30am this morning! Ouch! But I will take a 4:30 wake at home any day to a night in hospital. So bring on the early mornings because as long as I'm home with my little man I don't care.

Been feeling very flat as of late, no different to most days but I'm starting to feel like a broken down record. Playing over and over again, the same stuff. Reality is, that's how it is. Nothing is going to miraculously change this situation no matter how hard I wish it were.

We visited friends the other day and that was nice, normal stuff. But when I came home I started to feel really sad until finally after dinner I walked into Danny's office where he was sitting and cried. Spending an afternoon with friends, talking about normal stuff and not really touching upon what's really happening ended up being emotionally exhausting and a big cry was needed when I got home.

Danny and i talked about it together and hoped that it would become easier with time.
I think for me it's hard because what I live inside myself on a daily basis is hard and to not be able to share that as its happening is really exhausting. Sure I can laugh, smile, feel the breeze, chat, and be truly grateful that my little man is with us but deep inside I hurt like hell. Not being able to share that is truly isolating. To have to leave it inside so as to have an afternoon out is frustrating.

With some people it's ok. People who have sat with me and seen me at my worst, wanted to hear that sadness and share it with me by listening have been true angels in my life. Those people I can sit with and chat because I know if all of a sudden I start crying or fall in a heap they won't run away or feel uncomfortable.

I want to go on about this but I'm going to stop myself here, and instead focus todays entry on my little mans achievement. His big day out. First one amongst other kids as he is now ok to mingle as last bloods came back good. First real social day out. Yah for him and yah for his smiles and his spirit. What a little champion. So happy for him and so happy to be doing that with him.

Snoozing it off now but no doubt he will be keen to go again when his class comes around next Monday.




Friday, 8 February 2013

Cup of tea

We had our cup of tea this morning and it was great. Snuggled up together on the couch sipping our cups of tea, it doesn't get much better than that.
Have a much clearer head today and far more positive about his diet. I'm trying not to worry too much about it as I know he eats well. He always has. He has always been the kid that will take the capsicum over the biscuit any day. He eats plenty of raw veges and fruits and loves them but if you juice them he won't go near them. I think it's because as a family we have never had juice in our house, the choice of drinks has always been water or milk. Thinking that this was the best for them but now having to take milk away makes it tricky and none of my kids are fond of juice. Anyway I'm not going to stress about that one anymore as I have enough to worry about.
Gluten free has been challenging but no sugar is an easy one as Jayden doesn't have a sweet tooth. As for the dairy well I am glad we have our cups of tea back and slowly we will water it down so he doesn't have so much milk.
He's so happy this morning, always wakes up with a cheeky grin and ready for mischief. He loves his baby we got for him from the shops the other day and rarely goes anywhere without it.
No vomits today, thankfully but that of course doesn't mean I don't stop worrying about him. Not possible.
Playing doctors with his baby now. In the nudie once again! At least I don't have as much washing as I use too. So grateful he's smiling, playing and well.


Ready to face a new day and another day to be grateful for all my beautiful kids.

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Jayden vomited again this morning. I'm worried. I don't think I can stop worrying.
I dropped the kids off at school today and all I could think about was Jayden.
As I left the school grounds I saw my neighbour across the road and she asked me how I was, "fine" I said, but she knew otherwise. She embraced me in a big hug. She knows. She knows I feel like crap and she knows I hurt like hell. Tears welled up in my eyes and I wondered what I would have done without her throughout this awful nightmare. Her understanding, compassion and her intuitiveness to know when I need a hug. I truly love her, so does Jayden. We broke from the hug to a sound that made us both laugh, long story but it was funny. Weird feeling being so sad but laughing.
I walked home from her house and composed myself before going inside to see my beautiful little man who was playing Lego with his dad. Beautiful. Love seeing them together.
Not long after I had to leave again as I had an appointment to see the doctor for myself this time.  Just a few things I wanted to get checked. I didn't have to wait long upon arriving and was soon sitting in the doctors room.  This Doctor I have known for some time. She is a lovely woman whom knows our story and I trust her, shes kind, compassionate and just one of those doctors you know truly cares. Most should. But I have met the odd one that I question why they ever entered that field of work.
Anyway we talked about my stuff but mostly about Jayden. I found myself balling my eyes out at the sheer mention of the past year, his treatment, procedures and our life now. We also talked about the naturopaths diet and treatment and how I was feeling about it all.
Whoever we talk to gives us a different take on treatment after cancer or even before and its certainly hard to know what to think let alone what to do. We want to do the right thing by Jayden and I am certain making sure he eats well is a big positive and its so very important for our other kids too.
But what she did say that stuck in my mind was this "That time that you have in the morning with your son for your cups of tea is special, and if you were to only have him in your life for another couple of years then wouldn't you be grateful you had that time? and if he lives for a very long time then those are the moments he will remember too. That little boy of yours has been through so much already and those moments are important". I think shes right. Putting a little bit of milk back in his diet so he can have those moments back with me, is important. We will stick to everything else to the button but I think if tomorrow he asks to have his cup of tea with me then we are going to have it.
Writing this now is making me cry. Having to think so hard over such a simple thing is sad. Why we just cant get on with our lives without worrying about every single thing is really sad. Hes always been a good healthy eater and would opt for a piece of capsicum over a biscuit any day but I now found myself stressing over mealtimes, trying desperately every day to get it right. Every morning we try to get him to drink a freshly squeezed juice as well but He hates them all. We keep on trying new ones, but its hard. It shouldn't be this difficult but hes two and its tricky. I hate that it is so hard because we are already living an incredibly stressful life, difficult enough to get through the days without falling to bits, let alone anything else.
I miss my old life, there is no doubt about that.
Its late now and everyone is asleep, I know I should be but my mind wont stop thinking. I go to sleep every night with my last thought being of Jayden and my first thought in the morning the same. I lay watching him sleep next to me in our bed and I pray and hope that I will never see that space empty unless it is because he is old enough to want to sleep in his own bed. 
When people ask me how he is I tell them he is good. He is. Hes great, the best. He manages to keep me smiling, make me laugh and keeps me busy. His spirit lifts mine everytime I see his smile and  his cuddles melt my heart. He is truly my hero and I love him, like all my kids, more than anything.
My kids, my world.  


Thursday, 7 February 2013

Diet

Sitting in the car, parked under a tree and my beautiful little man sleeping in the back. I would normally take him home and transfer him into his bed but its school pick up time and our street is a busy noisy place at that time due to living near the local school. So instead I'm parked near a local park in a quiet street, under a tree with the engine running.

I Didn't have a too bad of a morning today and it always helps when Danny does the school drop offs and pick ups. As much as I want to be involved in my kids schooling it can be tricky if it means hanging around the school so my involvement is mainly at home.

Luke bought his first bit of homework home yesterday and it was very exciting for him to sit and do it with me last night. I hope he keeps the same enthusiasm up through to high school. He's having a lovely time at school and its so nice to see his smiling face when he comes home. Its also wonderful to see my daughter Layla, shes growing up so fast. i wouldn't exactly say she comes home with a smiling face but more the 'what to be expected from a year 6 girl' face but I know she's always happy to come home. I Miss them when they are at school, Jayden misses them also. As soon as Luke walks in the door Jayden and he are stuck like glue, playing together and interacting. Luke is so wonderful with him, and Jayden just idolises him. Really nice.

I'm having a better day but still with moments that are hard. I often worry I'm missing all the good bits when I'm having sad moments even when I try to keep them to times when I'm on my own.
I took Jayden to the park today and followed him around the playground but found myself in deep thought a lot of the time instead of focusing on him. Eventually I caught myself doing it when he was talking to me and I snapped myself out of it and I pushed him on his little car up the hill. We got to where the school was and for some reason it hit me again and I found myself trying to hold back the tears. Thank goodness for sunglasses.
Jayden was none the wiser as he has no problem living in the moment, boy do we all need to take a leaf out of his book. Especially me. Unfortunately reality is, it's not that easy. Easier for him as he's unawares but impossible for me as I know too much about this situation. To watch him so happy and enjoying life warms my heart but breaks it too. The knowing the possibilities of the future and the thought of him missing out on so much is truly crushing. He's such a little treasure. So easy going and happy. Of course he has the normal temper tantrums and some of them can be shocking but he's otherwise a true little gem. Beautiful little soul.

We went for a drive this morning to get a coffee at muzz buzz, my first one with him in ages as he's no longer allowed to have dairy and it has really been upsetting for him. Today I allowed him to have one of his 'cups of tea' with me. Which of course is a cup of milk in a takeaway coffee cup. Just the one, as a treat and we will call it our one 'cheat' day. His face was priceless. He was so happy to see his cup of milk and I had to ask myself, what's important? I know this diet the naturopath has put us on is a step in the right direction but its hard. It's hard to see him cry for his milk, to not be able to have his cup of tea with me in the morning anymore and I just have to wonder how important taking that away is. We have tried all the alternative milks that he can have and they are all in our fridge. So no milk or dairy has been in our house for some time. But he hates them all. for a while there we thought he'd be ok but no, he doesn't like them one bit. The other kids hate it all too so now they just don't drink milk at all. I'm a little confused to say the least and not sure to what lengths we should really be going. My beautiful friend Nadja, has helped me research a dietician but their ideas are often very different from the naturopaths.

We only want to do what's best for Jayden but I can't help but question some of those things, just as I've questioned every treatment, every step of the way. As a parent you want to be sure but I don't think you ever can be.
I wish I could be though. I wish I knew the answers.

He's awake, only a short snooze but time to take my beautiful little man home.

Home now, its a few hours later and he's in the bath with Luke. Giggling away the two of them and I'm just sitting outside the door. They play better when I'm not watching, then there's no competition for my attention. Love hearing them laugh.

Feeling very flat, kinda use to that feeling, and very lonely. Often feel lost, and trying hard not too by keeping myself busy but what I would t give to have my mum alive to cuddle right now. Those warm cuddles that mums do best and that sense of understanding that your mum gives when shes with you. for mums know you better than anyone. Really miss her.

I watched my kids playing outside today after dinner and tried to remember what it felt like when I were their age. Too hard, too long ago and too much has happened. And then I tried to think how they must feel now. How the past year has affected them and whether they would give it much thought now. I hope not. I hope all they think about is their friends, school and all the good things in their lives.

It's time to put my boys to bed. Cuddle up to my little rascals and sleep.







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Tuesday, 5 February 2013

A beautiful person

I didn't blog yesterday, It wasn't the best day and I needed to get to bed early in the hope of a better day today.

Dropping off the kids yesterday to school was hard. A simple normal everyday thing was truly emotionally difficult. To be around a lot of parents whose biggest worry may be what to cook for dinner that night, was hard. A reminder of what we no longer have. What we wish for everyday and what we envy every second. i just want that life back, one that's not full of fear and worry for my son and going to school reminded me that we don't have it, and never will.

For me now, life is so different to these mums and to stand and chat about trivial stuff is a very real struggle. i want to be able to do that and blend back in but a big part of me also just wants to hide. Hide from being normal because normal is so hard. Because normal doesn't really exist in my life anymore and because normal would mean pretending my life is not what it is. I cant do that. There's nothing normal about my life now.
Waking up everyday living with this fear is not normal.

When i saw my kids off, i was so very proud and so very sad. They both looked gorgeous, Luke all pleased as punch that he was going to be a "big kid" now and looking forward to seeing his mates and Layla all casual, and keen to settle back in. I sat in the classroom with Luke after we saw Layla to her classroom and he and i sat in his and talked a little about what was going to happen during the day. He then said it was ok for me to go and gave me a big cuddle. As I gave him that cuddle to say goodbye I felt the tears well up in my eyes. I know it wasn't just because its his first day at year one but it also symbolises so much. The year that's been and I missed the majority of it with him at school, the year that's ahead and most of all, the fear that I may never see the day that Jayden does this. The fear that I may never cuddle Jayden goodbye to his first day at school. I squeezed luke so tight as I'm so proud of him and i love him so very much and i left his room with an overwhelming feeling of sadness. I walked out quite swiftly past the mums, with a "hi" here and a "how you going" there, and as soon as I got in the comfort of my home I began to cry. Danny was there and gave me a big cuddle, he knew why I was upset and of course understands. Honestly this is so damn hard. My fear of the future is truly overwhelming some days and yesterday was one of them.

I watched the other mothers milling around the classroom that day and I envied them. I envy that they don't hurt each and everyday over the prospect of one day losing their child forever. I envy their simple worries. I know tomorrow is not a given but for most people its not even given a second thought. For me that's all i think about. how many tomorrows will I get with my baby?

Today I spent the morning with a beautiful, courageous and genuinely kind, wonderful lady. She is living a nightmare of her own and together we shared stories, cried, laughed and felt understood. We have different stories, different circumstances but we understood each other and that is the best feeling in the world when you feel so alone.
I wanted to wrap her in my arms and take her pain away. make her life so much better so that she could live life the way it were meant to be lived. But
No matter how hard we both wish our lives were different , they will never be.

When she left I sat crying, I needed it and she made me feel ok about it. Yesterday amongst all those parents I felt like I had to keep my chin up, smile and be happy. Today with this beautiful person and friend I could be myself and geez it felt better.

There is something very special about being around people who get you, in such extreme circumstances. Because there simply is no way of knowing what this is like unless your living it or some form of it. today i felt heard and today i had the cry i needed to have.




My cheeky boys and I tonight while reading books. These are the moments I live for, cherish and am so truly grateful for.


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Sunday, 3 February 2013

Starting school

It's Sunday night, the end of the weekend and the school holidays. Kids are back to school tomorrow and I have to say I'm sad about that. Even though there has been moments where they have driven me nuts, which is usually when I'm tired and not parenting the way i would like. For the most of it, however I Have absolutely loved having them home. i feel like i missed so much of their growing up last year that it was so nice to see them every second of everyday and to not be away from them for any length of time. It is so nice to be home with them all.

Spent most of the day covering books and labelling everything needed for their school bags. Normal stuff, nice. Jayden helping and asking all the time where his is. "When I'm bigger mum?" He says as that's what we tell him every time school has come up in conversation. He is so keen to go to school, nothing like my other two. Neither of them ever got excited about school, but Jayden, he wants to go big time. I so hope I see that happen. I will be the happiest mum in the world if I get to see him wear a school uniform. I won't want to see him go of course as I'd like to have all my kids home with me forever but I will be so happy for him and so very proud.

He vomited the other morning so that got my stress levels back up there. I so hope it is cyclic vomiting a lovely mum suggested before. I do hope that's all it is. Of course without that diagnosis I am completely stressed out every time it happens and haven't stopped thinking about it since. He didn't this morning so I relaxed a bit but I'm still worried. He doesn't get his next scan until April and how I wish I had someway of knowing sooner. Some test that he could do every morning so I could breathe a little. Although it wouldn't stop me worrying about the future, nothing can do that.

Jayden started off the day with colouring and ended up drawing all over himself Today, a photo to prove it below.


Love this picture, he looks so cute. He has the texture smudged all over his face, gorgeous little man.



This picture is of Layla and him sitting on the kitchen table today. Sometimes when we have problems getting him to take his supplements we call on the kids and today Layla was able to convince him. They both sat on the table and Layla carefully squirted it in his mouth with a syringe, making a game out of it all the while. Shes so beautiful with him she makes me so very proud. So is Luke. They all have their very unique and special relationships. This whole nightmare has truly bought them all so much closer and has changed them all I'm sure, as people forever.




Where he is right now. On my side of the bed. Little rascal.

Love my little man so much it hurts. Had moments today like everyday where I just had to focus on holding back the tears. Swallow them down and move on. I don't know if there will ever be a time when I don't. When I stop worrying, fearing the future and hurting. I can't see it.
Being back home and out of the hospital obviously helps a lot and having a bit of normality back is also good. But it's never really normal. There's no going back to how things were and no matter how much I wish it were so, its not going to be.
I'm grateful for today, and every second I have with him and all my kids. I'm grateful to be home with them and getting ready for school tomorrow. I'm grateful I will be the one that takes Luke to school tomorrow for his first day in year one!

I hope and pray I get to do that with Jayden.



Friday, 1 February 2013

A cuddle

I looked into my dads eyes today and thought how old he looks now. He's 71 but for a long time he just didn't seem to age and I guess when you see someone all the time you don't really notice. But today I did, today he was looking really weary and old. I felt sad as I know the past year would have taken its toll on him and continues to as it has done on all of us and I just felt sad for him. He doesn't complain though, just gets on with it and never whinges about anything. You would really never know if he was feeling like crap as he never let's on that anything is wrong. Always happy and jolly, seeing the positive in everything.

People often say Jayden reminds them of my dad. I believe it's not just in his looks but his personality too. They are both true soldiers in life and gentle and loving. They have both been through so much but still manage to smile. I love them both so very much and when I see them together its very Special.

Dad worked for danny last night so we were fortunate to see him first thing in the morning when he finished and he stopped to have breakfast with us.
When he came in the kitchen I was holding Jayden and his smile when he looks at Jayden is one of pure love and admiration. He gently squeezed his foot while he was in my arms and jokingly told him he would eat it for breakfast. Jayden smiled at him, knew he wouldn't do that and they both looked at each other with their smiles on their faces and it was if time had stopped for a second or two. My dad loves him, and you could see Jayden loves him too and it's as if they have some connection that nobody could understand but them. very special. there's just something about them both that is unique to them alone and No one else.

It was really nice to spend the morning with dad. I love him so very much and I hate to see him have to watch us live our lives as they are. He knows me. He knows I hurt everyday. He knows we are struggling inside and he's witnessing it. He gave me a big cuddle the other day when he caught me at a moment I needed to have a big cry. He knew that, and that's why he gave me a cuddle. I found myself sobbing in his arms and feeling like the little girl I once was and dad giving me a big cuddle to make it better. But both he and I know that that cuddle can't make this better. That no matter how big the cuddle this doesn't go away. That nothing can make this truly better. It must hurt him to no end that he cant make it better for me, that his cuddles can't take the pain away as they did when I were a little girl. just as it kills me that i cant make it better for my child. Together we can only hope and pray but We can't make it better.

Luke just woke up to find me in the bathroom writing this blog entry. He looked at me and said, "why are your eyes red?" I said "I'm just a little sad and had a cry"."Why are you crying?" He said. i replied "Because some of the things I'm writing about make me sad". He looked at me for a second or two then said "then stop writing mum".

So I am, and am going to put my beautifully clever little boy back to bed and snuggle up to my other one and try to sleep with thoughts of cuddles that do bring miracles, and hope that my son gets the one miracle i always wish for when I'm cuddling him.




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