Wednesday, 30 January 2013

Appointment with Dr Nick

Jayden had an appointment with Dr Nick yesterday. He didn't want to go so we had to bribe him with a toy to get him in the car. We didn't want to go either but knowing it was just an appointment and not an admission helps a great deal. Would rather not go back ever for anything but he needs to be checked out.

We got there a little late due to parking issues, but fortunately Nick wasn't. We went over the scans and talked about what could be seen on them. The original ones, extremely confronting. The most recent ones though show no sign of the tumor. thats great news of course but i wish it meant he was cured, forever.

A lot was said but the one statement that sticks in my mind was Nick mentioned that they don't know if this trial he went on just prolongs relapse or indeed cures the kids. That just made me feel sick. Some would say I'm a pessimist, but when statements are made like that in front of me by professionals and all the evidence available on the Internet points to a very slim chance of long term survival then how can I not think the worst?

Jayden sat in Dr Nicks room so quietly and played with his toys and you just can't help asking the question, why? Why a child has this happen to them? Why him? Why any child? It truly makes me so confused, incredibly sad and hugely frustrated that it continues to happen. So many new faces we saw on the ward today, very, very sad.

Before we left we had to get his blood taken from a different part of the hospital, which is usually just a prick of his finger. Today however he was required to have blood drawn from a vein in his arm.

He waited in the waiting room with us quite happily and we walked into the room where it was to be done when his name was called. All was fine until he realised it wasn't going to be a finger prick. I knew that images of his previous experience flashed before him and he went nuts. Screaming and crying for it not to happen. PathWest ladies though are experts at this and I love them for that. They take less than 10 seconds to find a vein, pop the needle in, draw the blood and out. The whole process no longer than 30 seconds. Why these women don't get called on the wArds to insert lines I will never, ever understand.

Regardless of how quick it was Jayden of course was still very upset and trAumatised. I think he has become so sensitive to this nightmare now that any procedure whether its quick or long is truly frightening.

He did make us smile on the way home though as he hadn't forgotten what happened and reminded us it hurt then said "stupid lady". His way of letting out his anger of the whole ordeal. I'm sure if his vocabulary were wider he would say a lot more.

He slept in the car on the way home and we were able to transfer him into our bed so he got a nice big nap for the day.

I later received an email from nick to say his bloods looked good and we could stop the antibiotics he was on. yah for that.

Big day for him but not as big as he has had. we finished it off with some quality time at the park.



Another day, another day to be grateful but in the back of my mind I wish so hard I could just be, and not worry about the future. That instead of noticing how lucky I am to have him with me today i could just love him without worry of the future.


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Tuesday, 29 January 2013

One day I'm fine the next is hard. I'm not sure exactly what set me off today but sometimes there doesn't have to be anything specific. I think when i manage to have some time to breathe and block out the pain and fear for a while, eventually it needs to resurface. Today was that day.

It's not like I fall to bits into a dribbling mess, although that can happen, but today it was more a case of a wave of emotions slowly moving towards the shore over a period of time until finally by the afternoon it crashes on the sand and with it out comes all the emotions.

From the moment I woke up I knew I wasn't myself. My little man had slept in so I was awake with the other two and he was absent by my side. He got up not long after and i thought I was doing ok but by lunchtime I felt like I was carrying a heavy weight on my shoulders. After lunch I had a moment to go out which i felt i desperately needed. I went to see about getting a bracelet mended at the local jewellers. When we were in chicago a wonderful woman whom is the wife of the, at the time, director/ boss of procure gave me this bracelet. On it reads the words "HOPE". I have never let it off my wrist except when the rubber like string that keeps it together brakes and off to the jeweller I go with it.

The man and the jewellers was wonderful. He understood how much it meant to me and even though it had faded and looking a little worse for wear he was happy to fix it at a very reasonable price. He told me he understood how important it must be to me, and that was it, I felt the tears well up in my eyes. I'm sure he never expected that response and probably wondered what exactly moved me so much, or maybe he never even noticed, I don't know. But by the time I left the shop and got into my car I was crying. Not sobbing, just letting the tears fall slowly down my face and the emotions out. I kept driving, not wanting to go home yet and eventually stopped at the local health food store. By which time the tears were wiped and I tried to continue to get on with my day and things i needed to do. I shopped for the items we needed and at the counter had a chat with the staff member. She knows of Jayden's story and I can't remember what she said but off I went again, tears welling up and I had to walk out. Damn hard. I cried all the way home then sat in the driveway to compose myself before I went inside. This is a Very lonely road.

Today I have him with me and I am so truly grateful for that. But the thought of losing him one day in the future, haunts me like nothing else could. No matter how hard I try it is there, how could it not be.

I was telling his brother tonight that he will be going to his mates house tomorrow because Jayden has to see doctor Nick. Jayden looked at me straight away and asked why? I told him he just wants to check everything is ok and he said with a very worried look on his face, "but home mum?" I said yes, we will be coming back home after we see him. You could see the relief in his face as soon as he heard those words and again I wanted to cry. I gave him the biggest cuddle and squeezed him for the longest time and hoped to god I never have to take him there again for anything other than a doctors visit.




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Monday, 28 January 2013

Card board cubbies

I haven't blogged for the last couple of nights as I've been so tired at the end of the day. That's a good thing though as that means I haven't been Laying awake late at night stressing about stuff. Of course that doesn't mean I don't still, just too tired at night to.

We have had a good couple of days and its been really nice just hanging out with the kids and finding time to truly breathe. I'm laying next to Jayden now and he's finally fallen asleep. He had a nap this afternoon so wasn't too keen to go to sleep. At one point I thought he was asleep and I lay watching his beautiful little face as I often do. Then he opened his eyes, looked at me and said "I love you mum, so much In the world" and I replied, " I love you more than anything in the whole world too". Just beautiful. He then closed his eyes again and fell back to sleep. I continued to watch his little face. As I looked at him I hoped with all my heart I get to look at his face forever, watch that cute little face turn to a more boyish face, then mans face and what a handsome man I believe he would be. God I hope that happens. Every time I think about it I feel myself well up. I feel the sadness creep in and I want to cry.

I'm looking at him now and just still can't believe he had cancer. How does and why does a child get cancer? Honestly it's so criminal and makes no damn sense at all.

Layla said to me today as we were playing with him out the front, "mum he just looks like a normal boy now,no one would ever know he's been sick". She's right. Apart from the bald patch at the back of his head from the radiation and the big scar therefrom surgery you would never know that anything had ever been wrong. We do though. Something not one of us would ever forget,least of all Jayden. I Believe he still has nightmares to this day about the procedures hes been through. Some nights are better than others but roughly every second night he yells out "no, no stop" in his sleep. Sometimes two or three times and sometimes it wakes him up and he cries for me.
No child that's been through what he's been through comes out of it unscathed, not possible. Neither does anyone in the family. I try very hard not to think of those times because it truly is disturbing and upsetting. I'm not sure I will ever personally read back my blog entries of those days.

We still don't know to what lengths the treatments he has had has damaged his body and many side effects can occur much later. Damage to his brain has been one and hearing loss but fortunately neither has been as bad as it could have been. So we are grateful for that.
ridiculous to think anyone could be grateful for brain damage and hearing loss. but we know it could be a whole lot worse.

At least right now he is sleeping and he's happy. We had a big day that involved going to a park, making cubby houses with card board boxes and painting! all the stuff kids are meant to be doing. I'm so grateful for every second we are together and I'm really not looking forward to the kids going back to school. i know Jayden isn't going to be happy about it. luke and him have become quite the team these past few weeks.

I'm going to sleep now, but want to post some photos from today. I think this is the most photos I have ever taken. Since Jayden stopped treatment I have not missed a day taking his photo or a video. I want to get every day in a photo just in case I lose one in my memory.




In his card board box cubby, (nudie again!) that Layla made for him. Bit squishy.




Painting with luke and Layla



The finished products, Jayden's, Luke's and Laylas respectively.










And the three together before bed,




Beautiful.
Love my kids.

Saturday, 26 January 2013

Australia Day

It's the evening and we are all sitting in front of the TV watching a movie. I tried to put Jayden to bed early as he missed his nap this afternoon and he was so tired but he didn't want to be in bed without Luke. Beautiful, cant break the routine. Funny though as only half an hour before he was screaming at him and made him cry. Quite the bossy little two year old with Luke and Luke just takes so much of it. Beautiful big brother.

Jayden put his T-shirt on for the first time today by himself. He is so determined to do things on his own. Every time I try to help him he says "no mummy,by myself". Of course I cant help pulling a bit here and lifting a bit there just to make it easier, but in the end he did most of it himself AND his shorts. So proud of him. He does truly inspire me with his determination to get on with things no matter how difficult they can be. If it doesn't work the first time he will keep on going until it does.

It's an hour later and both Jayden and Luke are asleep. What a difference it made when Luke came to bed. He loves his big brother so much.

Not long before bed I had to give Jayden his supplements and he didn't want to comply. Often he refuses and I have to say its not the best flavoured, however more often than not he does take it. The naturopath added a few more things to the mix like Ribraxx which doesn't really have a flavour so that's not too bad but another one for gut care has a really strong pineapple flavour which he doesn't like at all. So it can be abit difficult at times to entice him to take it. He dug his heals in tonight and flatly refused and I found myself saying that he needs to take it so he doesn't get sick again and go back to hospital. You could see in his face he knew exactly what I meant and took the supplements immediately. I found myself feeling so terribly guilty for saying something that I don't know for sure to be true and worried that one day he will look at me and say "but you said". It was a really awful feeling and I wanted to be able to explain to him the truth as I know it without confusing him beyond belief but I simply couldn't find the words. No doubt I'm probably making far more of this than it is but I just cant stop worrying. Poor little mite. he trusts me immensely and I so hope What i said comes true that he remains well forever and out of hospital. everytime i even right about it, it makes me feel ill. A shiver runs up my spine when I think about it and my mind try's desperately to block it all out. No more mentioning it.

As for his diet we are not doing too bad there. We have finally found a bread that isn't too bad and gluten free thanks to all the amazing suggestions by everyone. Still finding it hard to knock out dairy though as the other kids are ok to have it. Somehow I think we are all going to have to do it if its really going to work.
Somedays are definitely harder than others with his diet but besides a bit of dairy he is doing ok. The no sugar has really been the easiest as we just don't by anything with it in. Kids are hating that but its a good thing and we are glad for the change.

It's Australia Day and I can hear the fireworks going off like they were right next door. At first I thought it was someone on our roof then I realised its fireworks and then remembered it was Australia Day. How celebrations become so less important when your life becomes a daily celebration that your child is still with you. Again, much happier laying next to him right now than watching a bunch of fireworks going off. I might sound dull and boring as well when I say I don't like them at all. Mainly because I think they are a complete waste of money. Millions of dollars spent just to see lights in the sky?? Could obviously think of better ways to spend that money and there's beautiful lights in the sky every night, there stars. Just My opinion.

Their still going and now I hear the sounds of an ambulance or could it be police? I never know the difference. We had a good day today, spent a lot of it with my sister who has now moved down here to live closer to my other sister and us. Very lucky indeed we are. She truly is a beautiful person and my kids love her, especially my boys and especially Jayden. Really nice to have her close.

I need to be sleeping like my boys who are both snoring quietly. I have a lot on my mind but not something I wish to blog now and hope with time i will let it go.

Very tired, but very grateful for another day with my beautiful three kids.




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Thursday, 24 January 2013

Another birthday

It's my birthday today and I had a lovely morning with my children. They woke me bright and early with gifts and cuddles-my favourite and a yummy cup of tea. we all went out for breakfast to a fabulous cafe near the river and a park, perfect for the kids. Far better way to celebrate my birthday than out to dinner without them.

Its the afternoon now and I'm laying next to Jayden as he naps. I have this terrible sinking feeling about life in general and how it's just really not fair for so many. I'm 44 today and two days ago I know another beautiful child passed away from this dreadful disease ATRT. All I can think about is that family right now and how they will never get to celebrate another birthday with their son. Why do some people get to live for ages and others not long at all. I wish I could have shared some of my years with this beautiful boy. God knows he deserved so much more.

I look at my boy Jayden now and wonder how many years he will get. I always think about it and hope he sees many.
Right now I can't wait to be celebrating his 3 rd birthday and hope to God he gets so many more. But I don't know that, nobody does. Everyday I know is a blessing and every birthday a miracle. For me getting another year older is insignificant in comparison to the days, minutes, seconds that my son has with us. I don't care that I'm getting older, only that he does.

I'm sad, I shouldn't be as I have had a great morning but I always carry my heavy heart with me. Somedays it weighs a tonne and others not so much. Today a birthday celebration makes me sad. Sad that many wont see another year and sad that because I love my son so much the thought of not celebrating another birthday with him kills me. I know that's not so now, I know he's with me and god knows I am so grateful for that. Laying with him now is truly the most beautiful thing, hearing his breath, seeing him so peaceful, knowing he's with me. But as I soak that beautiful moment up I also want to cry. No longer do I have the free and easy mindset of not worrying about tomorrow but instead thats all i worry about. how many tomorrows will I get. How many moments will i get soaking him up. And with every child that passes away with this dreadful disease my heart aches more. For my son carries that same awful risk.

Never have I been more grateful that I have had a life than when I entered this world of childhood cancer. That i got to grow up, have a childhood, become an adult and now a parent. Never have I been more grateful that I am another year older, and never have I felt so sad that I was given so many years and so many children so few.

This journey truly is a lifelong one. it never stops hurting, the fear never goes, the sadness stays and it constantly reminds you of how grateful you should be for every second that you get.

There truly is nothing fair in this world and sadly our family and many others have been thrusted into the very reality of that unfairness. We live it everyday.

It's my birthday today but my Birthday wish is not for a new dress, shoes, whatever but for a cure. A wish that sees innocent children celebrate many birthdays instead of being robbed of them so early. A cure that sees my family stay as the five it were meant to be for as long as we all get old. That all my children celebrate many, many birthdays together. That's my birthday wish.

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Missed dinner date

It's my birthday tomorrow and I'm looking forward to waking up to my three beautiful kids excited to give me presents they have made or bought with dad. I would just be happy with loads of cuddles but anything that involves a cake my kids just love to celebrate.

I forgot Danny's birthday last year and I asked him why he didn't remind me and he said it just didn't matter to him. At the time I didn't understand but as today came and went I wasn't the slightest bit excited about tomorrow like I would have been in the past. Although i am looking forward to them jumping on my bed. Priorities have changed. The only birthday I'm anticipating and will be super excited about is Jayden turning 3 in May and every birthday he gets to after that. I also love my other kids birthdays of course. Another year older and another celebration worth having. But me getting older, well it just doesn't have the same effect or meaning. And as a woman we just don't wAnt to count past 30 and I'm way past that!

Tonight we had organised to go out for dinner to celebrate, just Danny and I and his mother was meant to babysit. But as the day went by and it got closer to us going out I started to feel anxious about leaving Jayden. I've never left him for an evening and no one else has put him to bed except me. It really started to eat away at me and by the afternoon I was phoning Danny's mum to cancel. She still came to visit though which wAs great, love seeing her and so do the kids.

As I sat around the dinner table with my kids tonight eating dinner I felt so glad I never went out. We had a wonderful time, I love having us all together in one place even if its just around the dinner table. The kids were happy, we were happy, truly beats the hell out of a dinner in a restaurant without them.

Jayden's been great today. Still wobbly. Had a few tantrums in the morning that seemed to go on for ages but otherwise good. He's eating really well. I'm snuggled right up to him now and I'm so glad I am. I don't want to miss one single second of his life or my other kids.


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Wednesday, 23 January 2013

A good afternoon

Nothing can put me in a brighter mood like the sound of laughter from my kids. They are all sleeping now but not long ago we were all laying on our bed reading books. We all laughed together about the pictures and stories making jokes about the characters along the way. Just priceless. Moments like those I want to remember for ever. Store them in my 'moments to remember box' in my mind that can be opened anytime and remembered. All four of us, Luke squished up to my right,Layla laying to my left and Jayden laying on her and me. All of us looking at pictures in books. It doesn't get better than that.

The whole afternoon and into the evening was like that tonight. Lots of laughter, lots of time together. My sister and her daughters have been Staying with us for the last few days and left today. Although its been great to have then here and I miss them already It also meant that we didn't have as much time together as we normally would. so when she left this afternoon I think we all really enjoyed being together again without anyone else.

My middle son was just beautiful this afternoon. He is my greatest challenge at times but is also wonderfully the most compassionate and empathetic child. This afternoon and this evening were great but there was a bit that didn't go so well at bath time. By bath time Jayden was getting very tired and he didn't want to have a bath but instead go outside to play. Now normally he gets his way but I just knew he was tired and really needed to get ready for bed. Luke got in with him and tried with all his might to jolly Jayden along but he was pretty keen to remain upset. Poor little mite. Luke was so concerned. He said to me " I really feel sorry for Jayden mum", and he did. He didn't understand that Jayden was just tired and he would be ok, he just hates seeing him upset. I know this as he spent a lot of time with us with Jayden in hospital and it truly broke his heart to see Jayden going through so much. The older he is getting, the more he's understanding and the harder I think it is for him.
By the time we got Jayden out of the bath though and into his room to change Luke had him laughing. All of us actually. Luke managed to change a very stressful situation into a very happy one and we were all giggling by the end of it. He's truly a beautiful boy and deeply loves his brother. We often talk about Jayden and he asks a lot of questions now which is good, but sad at the same time. Often I don't have the answers, I wish I did, but nobody does. Id love to tell him he will be fine and they will grow old together but I don't know that and I guess nobody does.

This afternoon and into this evening was one of the best afternoon/evenings I've had and all because my beautiful kids were happy, and with me. I'm truly going to hate the day when they grow up and move out! I hope they don't do that early:(

Together They made me laugh so much and it still feels weird to do that. I catch myself doing it and I wish I could just run with it and not think about all the fears and sadness. But it's there. I know it always will be. Fortunately I don't let it stop me having fun with them. The thoughts are there but I don't let the kids know it. Instead I wait till they are asleep and write it down here so I can sleep.

Jayden hasn't vomited for a while and I've been frightened to blog it incase I ruin that roll. He's still really wobbly on his feet and fell down twice today. Once on the footpath and the second time at home on our driveway. That time caused a big graze on his little knee. It bled quite a bit and looked really sore but he hardly cried at all. I sat him on our kitchen table and as I washed it and placed a plaster on it I thought to myself "you have seen so much worse than this, been through so much worse" And I wished so much he hadn't and that the worse thing that ever happened to him to this date was that graze on his knee. There's a saying my neighbour told me once "someone somewhere is praying for what you take for granted". And it was at this moment (and many others) that i thought of that saying. For before this life I was one of those people. I would put a plaster on my child's sore and never think anything more about it. Now I'm one of those people that desperately wish that plaster is all my child needs. Definitely nothing gets taken for granted now.

I did have a beautiful afternoon today with my three precious kids though. I love each and everyone of them so much. I so wish our lives could be different, I always will but it cant. So everyday I try to live in the moment. Sometimes I succeed and a lot of the time I fail but I believe that's got to be normal, and as much as I hate it I'm trying. I won't give up. Ill keep going and no matter how many times I fall I will get back up and be there for my kids. For they are without a doubt, what I live for.

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Tuesday, 22 January 2013

I just read my last blog entry back to myself and I cried. I cried because as I wrote I had kept all that emotion inside and when I read it back in full it poured out. Because that footage didn't just make me feel incredibly sad for that family but it also was another kick into my guts about the reality of my families lives.
Its scares me truly senseless that this boys story could be my sons one day and I'm crying because I'm scared as hell of that possibility.
I don't want to lose my son and I'm really and truly frightened that I will. Like a time bomb ticking, waiting, worrying that day may come.
I hate it. I hate cancer.
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A want for a happy story

Everyone loves a good story, even myself. Preferably One with a happy ending And preferably a real life one with a happy ending. The media loves to cover them, producers make movies about them and everyone loves to talk about them. It makes you feel good inside to read, see or hear about someone who triumphs against the odds. Unfortunately as we know, life is not always like that.

Today I watched a news report on the Internet ( the date of which it was filmed unknown). it was a piece that covered the triumphs of a little boy with brain cancer. Not long After his initial treatment his cancer returned, he had more treatment and it came back again, everyone told his parents there was no hope but they pursued help and a doctor treated him with a new method which rid him of his cancer once more. the report ended with this little boy happy at home with his brother and family and inside I felt great. I thought, wow, after all he's been through he's just doing fabulous, there truly is hope. It was posted on a site that underneath a close friend of that family commented that the boy is now fighting for his life in ICU. My heart sank. I was so heartbroken for that family. After all he has been through, where is the justice in that?

Sadly our lives rarely have the fairy tale endings we wish they did. The ones we see in the media and movies and maybe that's why we love them so much when we do hear about them.
I know I want our situation to be a happy story, more than anything in the world. A story that sees Jayden clear of cancer for the rest of his life. One that follows him through school, high school, manhood, fatherhood. That would be my happy story to tell.

Today This little boys story left me feeling really flat. Hopeless.
as i went about my day i thought about that boy and his family, his brother, and i hoped so bad for a miracle for him. that he would get the happy ending he deserved and miraculously got better, returned home to his family and lived the life he deserves. There is always hope I know, and I hope with all my might that happens for him.

Childhood cancer awareness is the first step to getting things changed, but I have never been more aware of childhood cancer in all my life than I have in the last 12 months yet I still feel completely helpless.

I can't fix it for my son and I can't change it for others feeling the same pain. There's no happy story in that. I wish there were.

As I lay next to my sons now while they sleep I am so very grateful for this moment. I am grateful for this day and this time, its the happy story i Iive for now, one that begins in the morning and ends at the night. And begins the following morning and so on. Just one day at a time.







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Monday, 21 January 2013

A day in photos

First up Jayden and I went to see his naturopath. He was the waiting rooms entertainment for the half hour we spent waiting, smiling, chatting and playing with his doll and teddy. Unfortunately that also meAnt he was a tad tired by the time we got in. it also didn't help thAt this was also right when his nap time usually is so he wasn't happy sitting while mum and his naturopath talked. Never mind, we got through it and headed out the door quite a few dollars lighter. Ouch. Hope this works.


-


We came home and I fully expected he would have slept on the way home in the car but he didn't so we had lunch and a dip in the blow up pool that our most wonderful friend and part of the family now, Nadja, gave us.

We had some big belly laughs today with the water in the pool and with water pistols. One of which is like a big syringe so Jayden manages that one like a pro. He squirted me heaps after I told him I didn't want my hair wet and laughed his head off when he doused me in water on my head! It really was hilarious and I can't remember the last time I have had so much fun with my boys. Luke was of course joining in and mums hair became their perfect target. Rascals. it was truly lovely and i found myself surprised that i was having fun. it was weird, like a foreign feeling, and i guess it is.

I'm very tired write now and finding it hard to find the words to describe that beautiful time the way I'd like to. Sometimes I just don't have them and this is definitely one of those times. Lets just say it was a really lovely day with my boys, danny included and for a part of that I truly laughed and had fun. However even in that laughter and the moment I caught myself being happy and knowing it was unusual I still had that fear. Even then while I was having fun I thought, this is great but how long will I have this? I can't help it. It's not that I've spoilt the moment because I haven't as no one around me would know but it's there. That fear. Always. It's just the way it is. I hate it, but I have to live with it every second of everyday and do what ever it takes to keep on going and make my kids lives as normal as possible. And it's hard. Damn hard.






He's asleep now and as expected fell into a deep sleep within minutes after turning the light off and reading books. He sleeps between Danny and I but is usually squished right up against me. At the moment his head is in my back and his feet are in Danny's. funny. Luke is to my left and sound asleep too. Love my kids.



Sunday, 20 January 2013

Birthday party

Today my daughter celebrated her birthday and for the first time since before Jayden was diagnosed we had a birthday party. It was really nice to be doing something like throwing a birthday party for one of my kids. Something that was a little normal. She has some beautiful friends, all really nice, good kids. her gorgeous cousins, my sisters daughters, were here for the first time to celebrate with her as well. It went without a hiccup and everyone had a lovely time.

Jayden was brilliant, he was in such good form all day except when he woke from his nap and he was really quite cranky for a good half hour. But apart from that he was really happy. I know he feels good in himself when he is able to amuse himself at times and just be happy. Which he was for most of the day. He's asleep next to me right now and took no time at all to fall asleep, not surprising given the day.

I have to say I really enjoyed today. Some would consider 14 plus kids in their house a nightmare but I really loved it. To see my daughter so happy was just brilliant and Luke and Jayden loved it too. So nice to see her doing normal things like playing with her mates and just having a laugh like 11 year olds are meant to. No stress, no sadness, just smiles. That's what I want for my kids, now and always.

Before Jayden went to bed tonight he talked again about when he gets bigger. I think seeing all the older kids today made him think about it. the ache in my heart when he says those words, stings. I can't even remember what he was referring to exactly just those specific words remain deep in my mind.
I truly hope he gets that chance. He surprises me everyday with how much he understands and how quickly he's learning things. He's going to be clever I just know it. He's going to do great things I'm sure. He will be compassionate, forgiving, kind, brave and always loving. I know that because he's all those things now. I so wish That i get to see him grow to be the man he is meant to be. The brother he is meant to be for his older brother and sister, the husband he would be and the father he would become. I know he would be great at all those roles.

It's hard to truly enjoy a full day without thinking about the future. It's hard to switch off what is really going on in our lives. Even when we do something normal like we did today, a birthday party for Layla, it is always there. you never get away from it.

As Layla blew her candles on her cake today, to celebrate her 11th birthday, i wondered if we would see Jayden's 11th birthday. how many birthdays will we get?
Nothing takes away that fear, the worry, or the sadness of that thought.

I have to remember and remind myself that Today was a good day. It bought smiles to all my kids faces and for that I am so very grateful.



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Friday, 18 January 2013

A new day

This morning I went shopping with my daughter. Her birthday is coming up and I promised her we would go shopping and buy her something nice to wear. It was so nice to hang out with her at the shops, buy something to eat and drink and walk around looking at clothes. She is great company and it was wonderful to spend that time with her for it has been sometime since we have had that opportunity. She is growing up so fast and even though I miss the days she was a little girl I love the young girl she's become.

Jayden and Luke went to the park with Danny while we were out and when we got home they were so happy to see us. It was great for danny to have that time with them and I'm so glad it went well, even though it started off poorly. When they left Jayden was crying and screaming for me and it took all my strength not to run to him and pick him up to take with us. According to Luke he cried for me in the car all the way to the park but when they got to the park he was happy. So pleased. Danny and I talked about it afterwards and it didn't occur to us that he might think he's going to the hospital without me as the drive to the park they went to was the same way to go to the hospital. Poor little mite. I'm so glad that wasn't what he was doing and no doubt he was as well. You just don't think of these things at the time and when you realise afterwards it makes so much sense.

He's had a good day otherwise, no vomiting and eating really well. When we saw the naturopath on Friday she put him on a gluten free, wheat free and dairy free diet and boy, has that been challenging. Trying to find a bread that even remotely taste nice that has no gluten in it is pretty tricky. He use to eat spelt bread quite happily before but now we've been told that that has gluten in it as well, damn. Made my first homemade gluten free loaf the other day and everyone of the kids turned their noses up! Looks like I will be eating that for a while. He's been good on the dairy, has taken to almond milk well but the yogurts we are still working on- that's really tricky.
He's also been given natural supplements and has been really good taking them, bit of a star patient considering he's only two.

I had a bad day yesterday, a sad one. After going through old photos and videos of a time that was once in our family. When I woke this morning I read a beautiful comment by a woman whom child's has the same condition and her words really made a difference. They made me feel incredibly understood and gave me a hope that one day I won't feel so sad for the past.

Everyday is a new day and everyday is a challenge without a doubt. If I get through it without crying I'm doing well however that doesn't necessarily mean I'm fine. If I manage to listen to my kids, laugh with them and play with them I'm also doing well but it doesn't mean I'm not aching inside. If I call in and have a coffee and a chat with you it doesn't mean my mind isn't a bundle of worry. This is just how my new life is now, learning to live with the pain and fear. Learning to manage to live a somewhat normal life even though I'm hurting like hell inside. I now know to take one day at a time and that is what I do, all I can do.
Today my kids are well and happy, today I'm with them and today was a great day.
What made it even better is my sister arrived this afternoon and to Jayden, she is the bees knees. Well, all of us actually. What a huge smile she put on his face and what a brilliant time he has had with her. Beautiful.




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Thursday, 17 January 2013

Looking back

It's bedtime and everyone is gathered on our bed. The kids are reading a book together that requires looking for objects on a page. I'm sure it won't be long before I'm needed but for now they are happily occupied.
We have spent most of the day at home which has been nice. I love being at home with everyone. I did take the boys out in the morning though to shop for their sisters birthday. Very interesting ideas of what should be bought for her and had I let them have their way it would have been a transformer and a tea set. We eventually managed to buy her something suitable and they both got a little something as well, just because.

We came home and shortly after Jayden had a nap and I organised dinner and the usual stuff. Dad came in during all this and stopped to have a cuppa. I busily cleaned up the kitchen as he chatted and he said to me how it must be helpful to be busy. He's right. I remember the first time I was back home and washing and cooking and trying To keep up with the housework. I remember the feeling of for the first time in so long I had a time where I wasn't consumed with worry. It was still there just not as bad as I was thinking about what I was doing and what was next. Every time I do the washing, hang it up, put it away, do the dishes, put them away, vacuum, clean I am so grateful I'm doing it. I know I've mentioned it before but truly it helps to be busy doing these things and when I'm doing them I remember what it was like to not be doing them. I remember what I was doing instead and after i have that thought I take a deep breath and exhale it with relief that I'm not doing that now.

Danny and I had some time this evening looking at photos on the computer. Lately I've been trying to sort out all the photos on the computer of the kids so they are in some sort of order. we began looking at pictures of just after Jayden was born and then up to just before he went to hospital. It was truly heartbreaking. We watched a video that I remember filming like it was yesterday. Jayden at about one years old at the table happy eating with his brother and sister and typically full of smiles. He's always been a really happy kid and watching him tonight was hard.

I hadn't seen this 2 minute or so long footage of him since I took it well over a year ago and it made me cry. I wanted to reach inside the screen and be with that little man again. Be back in the time when Jayden was a normal little boy with no health problems or concerns. A time when as parents all we had to worry about was the 'normal' stuff parents worried about. I remembered how I felt when I was behind the camera and I yearn for that feeling again. That feeling of contentment a feeling that is so foreign to me now. No anxiety, sadness, fear, worry or true deep and painful heartache. Nothing. I miss that. Really miss that. As I watched the clip unfold to the end I found myself in floods of tears. I really miss that life. I always will. I miss feeling no pain. What I wouldn't give to watch my boy each day and not ache. Not ache for him and what could lie ahead of him. To just watch him and smile and just be content. I miss that beyond words.

We had to turn the computer off after that video and when I was back in the kitchen and Jayden was there I scooped him up and hugged him tight. I know nothing will ever bring that time back or that feeling and I know its just the way life is now for us. but watching that film reminded me of a time that was so easy and as I squeezed him tight in my arms, I wished so much it still was. I hugged him for the longest time, lost in my thoughts and it was as if he knew and he cuddled me back. nestled in my neck and not saying a word, just knowing how much we mean to each other. how much i so love this beautiful precious boy and knowing how much he loves me back.












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Tuesday, 15 January 2013

Chatting with Dr Goldman

Jayden vomited again this morning after his breakfast. My anxiety levels are now rising again and I'm trying to believe all is ok.
My very good friend suggested yesterday that it may be due to when he's done too much activity or had a lot of stimulation followed by or, not enough sleep. I thought that was a very plausible reason yesterday as he did go to bed late the night before and was up very early. But last night we got him to bed at a reasonable time even though he didn't want to go to bed without Luke. He even slept in till 6:30 this morning so that seemed like a good sleep for him. I'm trying not to panic and keep reminding myself he only had a scan a week ago but it's very difficult to relax.
Another lady commented that her son with ATRT was the same and still is and they have discovered its a syndrome known as cyclic vomiting syndrome. I'm hoping that's what Jayden has as well. But without any sure diagnosis I'm just a basket full of anxiety and worry.

We spoke to Dr Goldman this morning via Skype, it was so good to see his face and hear his voice. I truly love this doctor, he really is the best.

We talked about a lot of things including new approaches with relapse in ATRT as I wanted to know what was out there and if there's any advances in that area.
He was so lovely to speak to and fabulous at explaining things in terms that danny and I can understand.
Before we even got into talking about the medical stuff he told us he thought we had made all the right decisions concerning our son and how happy he was Jayden's MRI was clear. Really nice to hear those words said : "we made the right decisions".


He also said , sadly, that we were by no means in a place that we can breathe easy yet or say he is cured at this time but he was very happy about how Jayden is so far. He reminded us that this is the most volatile time as these nasty tumours tend to come back early but that everyday we get with Jayden is a good day and a day more in the right direction.
I told him how Nick had told us that should Jayden relapse he would not treat Jayden to cure but instead to only manage the disease. Dr Stew said that he didn't disagree with Nick but he would never take someones hope away. He would treat Jayden in the hope of curing him always. He is always so positive and made us feel really good by the time we got off Skype.
I mentioned to him also about jaydens vomiting and he told me if I was worried to just get another scan, to go with my gut instinct always. That kind of scared me a bit because my gut instinct is always in panic mode and even more so now.

I'm so grateful to have met Dr Goldman and have him in our lives. He is truly a decent human being and I just wanted to reach into the computer and give him the biggest cuddle today before we said goodbye. Just love him.

Its late in the evening now and Jayden's asleep, Danny's getting ready for bed and our two other kids are staying the night over at Nannas house. I miss them so much when they're away but I know they are getting spoilt and are very happy.
the house feels very empty without them though :( . No little voices, or sounds of playing. don't like that. Would much rather hear my kids playing, arguing even than the silence of the house without them. But then, its only one night so I'm sure I will survive.

We have another appointment with the naturopath tomorrow to let us know what our next step is.they have organised for a sample of Jayden's blood to be sent to Switzerland for genostics testing. It's individualised diagnosis and therapies based on molecular medicine- quoted from the handout they gave us. Wasn't cheap. So hoping it will help. It's difficult to know what's best in the way of alternative treatments and when your in the situation that we are in and many others, you become vulnerable targets for so called " new therapies". We do think this is worth it though, well, we certainly hope so and how can you not try everything, within reason of course.

Hopefully tomorrows visit will shed some more light on what we do from here.

As for Jayden he is in Fabulous spirits but missed his siblings terribly today, especially Luke. As the age gap between Luke and Layla appears to be getting bigger Luke has turned to Jayden for companionship a lot. They play and argue, and play and laugh together all day. Luke looks out for him like a big brother knows how to do best and Jayden is just besotted with him. Everything Luke does Jayden wants to do, so toilet training hasn't been too difficult this time round. Except he's taken to wearing no clothes all the time now, great for washing days but not so great when he wants to go to the park. We end up having to go to great lengths to get him to put clothes on.
That's the one thing we can't get him to copy off Luke, wearing clothes. But even Luke doesn't get around in much except shorts. Admittedly the weather is hot and I'm sure we would all be in that attire if it was acceptable to do so.

It's time for me to sleep. Snuggle up to my little man and be so grateful he's here. All day I hug him that little bit tighter and always for as long as he will let me and tell him all the time how much I love him. All my kids. When I was growing up I always remember that not a day went by without my dad telling me he loved me, he still does, every time I see him and what a nice thing to know. I want my kids to grow up knowing how much They are loved too.
With Jayden I know I hold longer, more often and smother him with cuddles more often , for I feel like I need to make up for time I may lose in the future. Every time I hold him I soak up that moment, try to put it in my memory in a box kept for special moments that I never want to forget. A place that I will be able to call upon one day and recall how beautiful that moment was .
I never want to forget every second I have with my kids, every moment, every cuddle and every word. I hope that special memory box gets to fit a lifetime of special moments with all my kids.


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Sunday, 13 January 2013

Vomiting???

Jayden vomited again today. I'm not as worried as before, However a part of me is still nervous and always will be that it's a sign of something not good. I wish I knew why he did still vomit. In fact I wish the doctors did but they have no idea. And while they don't know i will always worry that its something sinister because that's how this nightmare began. Some doctors have suggested that it may have something to do with the brain surgery he had to remove the tumour but the surgeons tell us thats not the case. In fact come to think of it, the amount of conflicting information we have had over numerous things in the past year is Quite a lot. When you have to deal with the medical profession day in and day out you often get a lot of different opinions, ideas, and beliefs. we have sometimes had to fish through all the Information and work it out for ourselves. Unfortunately we haven't come up with the solution or reason for Jayden's vomiting and the only thing it points to is tumour. So every vomit will always make me nervous.
It would be nice to find another reason so we wouldn't panic every time he did it and Jayden wouldn't have to feel so crap.

Jayden was also super wobbly on his legs again this morning. The two definitely seem to be linked. Vomiting and balance. On the mornings he vomits he is almost always unsteady on his feet, noticeably so. I wish I knew what that was all about.
I took him and the kids out this morning for a bite to eat. Really nice to be out and the kids of course, loved it.
He's now asleep next to me in our bed and looking very peaceful. I should be sleeping too as I had a terrible night sleep after staying up ways too late on the Internet. Not too long ago I couldn't sleep for a very different reason. I will never forget what Jayden went through and I will never stop fearing it happening again. There is truly nothing more scarey, especially when you know so much now.
We are taking him to a naturopath this afternoon to get tested for a whole bunch of things and hopefully they can set us on the right track to keep him strong and healthy.
It's a start, hopefully a good start to a long and healthy life. My god I so hope and pray for that !




a picture of us this morning at 5:30 am!
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A more relaxed household

I'm laying next to my little man and he's finally asleep. It has taken a little longer than normal for him to drop off but he's sound asleep now, along with his brother, sister and dad. I'm pretty sure it took so long because he had a late afternoon nap but never mind, he's asleep now.
He got to stay up a little later than normal as well because of his late nap and that was really nice. it meant he was up with us all and we all went to bed at the same time rather than him going to bed first. So we all sat around playing Lego and watching a bit of mindless tv before bed, then loads of books.

When he got up from his sleep this afternoon I hung out with the kids and played games. Layla, Luke and I played a card game that was a lot of fun. we laughed about who was cheating, boasted when we won and played again. Jayden sat on my lap watching us for a while and helping me, then hopped off and played with his lego next to us. It was so nice not to worry about anything for a change, except being with my kids.

As we giggled and made fun of each other i thought about how nice it must be for my kids to have their mum back. For so long i have felt absent in their lives even when I've been there. I rarely ever had time to really be with either of them and even when i did make the time, I really wasn't there. My mind was always elsewhere worrying about Jayden. These last few days since the clear scan have truly been the first days I have ever felt close to being their mum again, really being their mum. I've been able to spend quality time with them, by really listening to them and hearing them and its been really nice. I've missed that. I've missed being the mum I was. I know it will never be exactly the same as it was but it was so nice to get a bit of it back for a few days. to just relax with them these last few days has really been wonderful. The whole house feels different to be in. i can feel it, they must too. Danny and I are not as stressed and so the kids are happier.

It's also been nice to get up in the morning with Jayden and not panic about whether he is going to vomit and if so, what it all means. I know it may not last long, the not worrying, but for this day I'm just concentrating on enjoying the moment.

I will be stressed again, and the worrying will return but right now, today, this very moment, its ok.

Today i can Really smell the air, feel the breeze and breathe.

And most of all it is truly priceless to really BE, with all my kids again.



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Friday, 11 January 2013

Frustrated

Its late and I'm not sleeping. tonight I'm finding it hard to rejoice in our news of a clear scan when I read today that another child of ATRT died yesterday. A beautiful little girl. I can't stop thinking about her, her mother and her family. A beautiful lady that often writes comments of support on my blog. Her child is no longer with her and my heart is heavy thinking about her.
A part of me even feels guilty that my child is still here and hers is not. How is any of this fair? No child should be dying of cancer and the more I read about it the more frustrated I become. Because if more money went into research this wouldn't be happening.

We did an interview today and I'm suddenly wishing I hadn't. They focused on the good news and at the end of the day the focus should be on childhood cancer. Why doesn't that make the news every night? Why isn't that the focus of political campaigns?

I read in the paper the other day about the government spending 10 million dollars on renovating an old building? Truly, where are their priorities. I'm truly appalled by this type of what I think is senseless spending. I wish so much there was a major shift in all of this and that We could see a real change in childhood cancer research. But without serious funding it will remain the same and children will continue to die.

This all really saddens me as I now know many people like ourselves travelling similar shocking journeys and its just all so wrong. And thinking of this beautiful woman tonight breaks my heart. She can no longer hold her beautiful girl and I so wish I could make things different for her. I feel so damn helpless and so very frustrated by all this pain. Someone or some body of people truly should be accountable for it. Because her losing her child and many others is just truly so bloody wrong it's insane. I know there are great organisations like Eric Parishs Telethon adventurers but why does it have to take a parent to get things moving? And why can't he have that 10 million dollars instead of the building?

Honestly I get so frustrated thinking about it.

My heart aches for this woman and there's nothing I can do. I wish I could take her pain away but I know nothing in this world can do that. I know her journey has been and will continue to be the hardest she will ever travel in her life and one that has changed her as a person and a mother forever.

Today I was able to breathe but I know for many, this is not the case.





Thursday, 10 January 2013

It's ok

It's late and I'm laying next to my beautiful boys whom are both fast asleep. I'm not surprised as it was a big day had by all. I'm about to join them but wanted to write this entry first.

We were up early today as Jayden was due in at hospital at 7:30 am. Dad and his partner came to look after Luke and Layla while we were gone. We left the house just after 6:30 for the hospital.

Jayden was really good about not having anything to eat. I told him the night before what was going to happen today and that when he wakes up he won't be able to have anything to eat. He truly amazed me that he remembered and was really good about it. Neither did danny or I and we all drove in silence to the hospital. Well, Danny and I barely spoke but Jayden gibbered away to himself all the way there.

I felt Sick driving in and very very scared. I don't know exactly how danny was feeling but I assume much the same. When we parked the car we got out and Jayden and I walked in while danny sorted the ticket. From the moment I walked through the doors I wanted to cry. I hate returning here, it makes me very sad and just reminds me of what my son is facing.

We went to the radiology department, let them know we were there and then sat in the waiting area for the nurse. Soon after she came out and we followed her back to one of the offices where we filled out the usual forms that we are so familiar with we could do blindfolded and the nurse took Jayden's OBS. She then placed Elma cream on the back of his hands and it was that moment that Jayden became really restless. He knew this meant a canular was going to be inserted and he has had so many bad experiences with that its no wonder he was worried. I was too. We all were.
We then went back into the waiting room and all Jayden wanted to do was go home. We managed to entertain him for a short while longer until the anaesthetist came out to explain to us that because of Jayden's previous experiences maybe a pre med would be a good idea. We agreed and were taken back to where recovery is to have his pre med. unfortunately only half of it went down and the other half he spat out.

Another hour waiting and we were called in. By this time Jayden was a little bit drowsy but by no means enough to keep him from being extremely upset when we followed the nurse into the next room. Before we entered they asked danny to leave as only one parent is allowed in and it was at this point Jayden really knew something was going down. He became so upset and wouldn't let the nurses look at his arms to insert a canular and eventually they went with the gas.
I was holding him in my arms when this was all happening and felt so bloody helpless. Watching him so terrified as they held the mask over his face and him screaming for me to take it off. Just torture. Doing that once in your life time is torture, but to do it as many times over as we have is just extremely painful. It never gets easy, it only gets harder. Going back there today was really hard, hard for all of us.

When he finally fell asleep we lifted him on the bed and I was escorted out. Outside the room danny was waiting, sitting on a chair with his head in his hands. He had heard Jayden's cries and then muffled screams and he was equally distraught as I. Awful stuff.

We walked out not saying much and went and got a coffee and a bite to eat. We talked about the events that occurred and just everything Jayden. On the walk back up the ramp to the hospital we talked about how emotionally intense and incredibly heart breaking this journey is that the pain of it at times seems worse than death itself. We both agreed that if not for our other children we have both thought about at some point in this journey that death would be far better than the excruciating pain of your child dying. now this is not to say we are going to kill ourselves but merely the thought passes your mind when the pain is that bad. and it is. we know what it feels like when our child is that sick, that we could lose him and its so painful its unbearable. i think we talked about it today, in some way preparing ourselves for what may be ahead.

More waiting and finally we heard his cries and were called in to see him. I couldn't pick him up quick enough, I so desperately wanted to have him in my arms again. He was in such bad form though, really cranky from the drugs so it took sometime to calm him down and eventually he fell back asleep in my arms and we sat in the recovery room until he woke again. I felt so much better when he was in my arms and being able to hold him for such a long time while he slept was just bliss.

He woke an hour later, had a drink, they removed his canular and we headed of out of there. Before we got into the elevator we saw nick and he said he would have a quick look at the results. We sat waiting and I just wanted to ball my eyes out. So much emotion in today, so many scared thoughts, awful sad feelings and just gut wrenching pain. It must have been the longest 10 minutes ever and when I saw his face again it was as if time stood still before the words came out of his mouth. "It all looks fine, even the area where the brain damage was seemed to have cleared. Steroids must have done their job.' That was it. I just wanted to give him the biggest cuddle but thought it not appropriate and didn't. The best feeling ever. We left feeling relieved but a very big part of us knowing this isn't the end of this nightmare. We can breathe today and we are going to and we are going to enjoy everyone of those breaths but we know that just around the corner in three months is his next scan and this tumor can return in that short space of time. But today we are going to be damn happy its not there now and hope to god it will never be.




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Wednesday, 9 January 2013

MRI rescheduled

We are just leaving Danny's parents house after spending the morning there for Danny's dads 70th birthday. They live in a lovely house in the hills outside of Perth surrounded by trees. Very peaceful.
Jayden and I walked around out the back for a while with him pushing a doll in a pram( toys that are always at Nannas and his favourites). I didn't really want to go for a walk but I reminded myself of a time when Jayden couldn't go outdoors. When he was stuck in a room with a window that didn't open and a view of a garden but no sky. No fresh air and no trees. Now we are outside surrounded by trees, a beautiful cool breeze on our faces and the sky as blue as can be. I thought about that time in the hospital and shuddered. Never ever do i want to go back there. And with every step along the path we walked today I was so grateful we are not in the hospital now. That today Jayden is outside doing what a two year old should be, adventuring and enjoying the breeze.

We all love visiting Nanna and granddad but after a couple of hours Jayden wanted to go and when he wants to go he let's everyone know. He didn't have a good nights sleep last night so he was tired and slept on the way home in the car. I have no idea why he slept so badly but am worried that its not a good sign. Jayden's oncologist got back to me via email by yesterday afternoon and he said just to keep a close eye on him for anymore changes. As if I'm doing anything else? My eyes could not be any closer on him. its frustrating because I'm so worried as any mother would be and theres nothing i can do.
Fortunately he never vomited today but deep down I know that means nothing however it does help to not think about it quite as obsessively.
I'm laying next to him now as he has his midday nap, we were able to transfer him out of the car and he's now asleep on our bed, well, technically his bed as well.
As always he's looking so peaceful and happy.

Just as I wrote that last sentence Jayden woke crying. He seemed uncomfortable and said something was "ow". It reminded me of what he was like the previous night. All night he was waking crying and on several occasions said something was "ow". So I emailed nick again and let him know I'm worried he's in some discomfort. Later in the afternoon I heard back from the radiology department and they have him booked in for an MRI the following day.

It's now the following day, 7:00am and we are on our way in.

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Tuesday, 8 January 2013

More vomiting :(

I don't know what it was about this morning but as soon as we woke up I had a bad feeling about it. As I bought Jayden's cup of tea with me my gut instinct made me take a towel as well and lay it in his lap. I hoped I was wrong and returned to the kitchen to get mine, all the while hoping what I was thinking would not occur. By the time I returned and sat next to him on the couch, it happened. He did a huge vomit. It went on for what seemed like ages and didn't stop until what seemed like the entire contents of his stomach emptied.
I diligently cleaned it up and felt ill inside. Not because of the vomit but the reason he could be vomiting. Cancer truly is hell and there is no damn end to it. Yesterday I was able to breathe, today I feel like I'm suffocating. I truly hate this with every inch of my being.

It set the tone for the day which was very stressful. Both danny and I having little patience at times with each other and just everything in general. Stress can bring out the worst in people. Fortunately we know the cause of it and manage not to get too upset with each other. We are both hurting and both really concerned.

For the rest of the day I've watched him so closely it's making me go crazy. His balance seems to be a lot more off than usual and every time he wobbles I want to cry. In fact all day I've just wanted to ball my eyes out. I can't stand it. It's insane. Our lives are just insane. I feel like I'm walking on egg shells all the time, hoping nothing will break. that if I'm careful enough all will be fine. which of course its not. none of this is fine. childhood cancer is not fine, it sucks.

He's asleep now having his afternoon nap and I'm so damn worried. I emailed Nick with my concerns this morning but still haven't heard back. Sitting, waiting and hoping for the best is all I can do and it just does not feel like enough at all. I hate feeling so helpless. Being at the mercy of this crap disease.
I'm so cross right now and really damn scared.
I'm not feeling good about this at all. Really nervous. My gut is going crazy. I want to remain positive and believe its nothing but I can't. I wish I had a handheld scanner that I could whizz over his body from top to toe every morning to detect any tumour and hope that it would find nothing, so I could breathe for that day. But instead we wait. Waiting, and hoping we never get bad news.
The MRI is not for another week and I'm truly concerned. I'm trying not to think about it but how can I not. It invades my every thought, there is nothing I think about more.

I love my little man so much. He's growing up so beautifully. Almost toilet trained now and he instigated that himself. He talks so much, laughs heaps and is a real little joker. He tries so hard to keep up with his brother and sister with everything they do. he wants to be bigger, bigger like them. That breaks my heart like nothing else for I want that so much for him too.

I don't even know how to finish this entry, what final thing to say. I want it to be positive or some mention of what I'm grateful for but right now I just feel numb.
Its just not fair.

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Monday, 7 January 2013

Another day and counting down the days till Jayden's next MRI. Watching him even closer than before if that's even possible. His every move under my Internal microscope. Every time he wobbles on his feet, coughs or looks at me funny, my anxiety levels climb.

He woke the other night and didn't know where he was, both danny and I tried to speak to him but he seemed to be in a daze. He then started crying and asking to go home. I held him tight in my arms and told him he was home and mummy is here. His arms were floppy but his back was rigid and he wouldn't respond to me when I asked him if he wanted to layback down to sleep with mummy. But by the third time of asking him I finally heard his little voice say, yes mummy. Oh my god that was the best sound ever. I cuddled him and stroked his beautiful hair until he fell asleep again and laid there watching him for the longest time after. Worried senseless that I may have witnessed another seizure. He was fine for the rest of the night and has been since so we hope it was just a nightmare.
As expected I didn't sleep well that night and worried about my son and his future. It's easy to say to live in the now but sometimes it's hard not to look further.

I sat in the doctors waiting room today but this time it was for me. Jayden came with me which is certainly not ideal given all the bugs that go through there but he wouldn't have me leave him at home with dad. As we waited and he played I watched another mum enter and sit down with her two much older children. I'm guessing they were probably 12 and 14. I sat there watching them and it made me sad. It made me sad and a lot jealous that she probably never had to think about whether her children would make those ages but instead take it for granted. i know thats likely because that was me once. I sat there wishing that was still me, that i didn't have to wake each day worrying about the future.
Worrying whether or not my son will still be in my life next year, the following and so forth. I now live each day and at the end of it am so grateful I had that day. But I wish I didn't even have to think about it.

Jayden had a good day today. He was really happy, didn't have much of a nap but happy. He helped me with all the stuff I had to do around the house and we fed Layla's Guinea pigs together as Layla had a sleepover. Nice to hang out.

In the evening He enjoyed a bubble bath thanks to a relative who gave him some bubble bath for Christmas. I stirred up the bubbles and as i did I was reminded of a time when he couldn't take a bath and it saddened me but also made me feel so grateful that he is now. that he is able to enjoy one of life's pleasures, a bubble bath.

hes laying next to me asleep now and luke is as well. my two precious boys that i love so very much. I'm watching them sleep and hoping they are having happy dreams. that they both grow old together and have that special bond that brothers do. I like to think that that will happen but also know the very real odds. but i want to believe it will and run with that thought. Make it as real as it can be in my head in the hope with all my might that it will become that in real life.






Friday, 4 January 2013

A time together

Jayden hasn't vomited for a while now and hoping that means all good, although we will never really know until he has his scan. January 16th is the date for his next MRI and we are so hoping it will be clear. I can't help but worry myself senseless about the results, but I think that's something I just have to accept.

Kids started the day very happy with Luke and Jayden playing together with Layla's barbies. There's nothing nicer than seeing them in touch with their feminine side, funny. What having an older sister can do for a boy. Interesting enough she wasn't joining them but instead cleaning her room as she desperately wants a birthday party on her birthday. I told her that she had to have a clean room before that could happen and it is now spotless. Little did she know she would have one regardless but I was hoping she would do a good job of tidying it up anywAy and she did.







We are now off to Danny's brothers house to celebrate his birthday with his family and i am looking forward to that. The kids are too but none of us enjoy the drive in this weather. There's no doubt about it Perth weather is hot in the summer and seems to stay that way for ages. I use to love the hot weather as a much younger person but now not so much. In fact give me a room that's air conditioned over an outside activity In This weather, any day.

So we are off out of the house and together as a family. for so long we weren't together and i will never forget that time. i know i will always be grateful we are together now. Every time we sit around the dinner table together, get in the car to go somewhere together or just hanging out together at home I remind myself how lucky we are. Just being together is the best thing on earth and i know how horrible it is to be separated. I never ever in my life want my family to be separated again and I hope and pray with all my might that we never will be.

So for now and today and everyday onwards that we are together I am truly grateful. Waking up every morning to all my children is truly the best thing in the world. Their smiling little faces, sometimes grumpy faces is the best sight to see and every whinge, cry, laughter and word is truly precious.

I am truly grateful for every second of time we get to spend together and I hope for a lifetime of more.

Wednesday, 2 January 2013

Our story


I'm so tired lately yet seem to be getting enough sleep. Jayden is asleep in the car at the moment and I should be too. About to transfer him to his bed (well, our bed) as its too hot to be in the car . He transfers well but now that I've written that he probably won't today. Will give it a go all the same.

He's in bed now. All good. Almost wasn't with my other son intent on talking as i quietly walk pasted with Jayden in my arms, rascal. Jayden looks very peaceful and happy now, sleeping soundly. I love watching him sleep.

He was up again at 5:00 am this morning and bright as a button as per usual. We had our cup of tea and fortunately no vomiting today, at least not as yet and hoping that will be the same for the rest of the day.

We had a quiet day yesterday and didn't really do much other than hang out at home. One of my most favourite things to do but sometimes bores the kids. They just want to go, go, go all day and we just want to kick back and do not much at all.

Today we started off with a swim however in the neighbours pool which was just brilliant and woke us all up. Nothing planned for the rest of the day but that's ok.

But right now I'm laying next to Jayden whilst writing in this blog. This morning I've been thinking about an entry i read the other day in another mothers blog about her husband. She wrote about how they met and fell in love and it was really beautiful to read. She wrote it as it was their anniversary and wished him a happy anniversary at the end of it.

Ever since i read it, it got me thinking about Danny and my relationship. We don't have the same story or anything like her story. And we never did the usual - met, dated, fell in love then married. It was nothing like that at all. although it probably isn't like that for a lot of people but rather, what is expected.

Anyway, I met Danny when I was 30 and at that time I had just broken from a 'not the best' relationship. I seemed to have had a terrible ability to constantly choose the wrong partner when I was young. That's not to say there was anything wrong with the men I dated as I'm sure they became very right for someone else, just not for me.
My first impression of Danny was "decent". Weird I know but he truly is a decent human being and when I first met him it was obvious. He was kind, respectful and honest. I never thought much more about him after that first meeting. however I was working with his mate at the time and he harped on about Danny to me so much afterwards insisting I should give him a call that in the end I figured "why not", he seemed a really nice guy and I could do with some "nice" in my life. This all sounds unflattering towards danny at the moment but let's bare in mind I was not good at picking the right fella and even when he was right under my nose I didn't see it. Thank goodness, for his mate who insisted I ring him. I did and that was the beginning of a really fun, caring and honest relationship with the most easy going guy I had ever met. I never saw it as a long lasting relationship though and neither did danny, we were just happy hanging out together.

The piece I'm missing in this story Is that at the time, danny was 22. So where I was heading in my life was different to where he was heading. We both knew that and that was ok. So that's why we thought nothing would come of it.

I can't remember exactly how long that part when on for but eventually we went our separate ways and I travelled overseas for a job (sounds glamorous but it wasn't). We always remained in contact as he was someone I couldn't see myself without in my life in some shape or form even if it were just friends. To cut a long story short he came over to where I was, it didn't seem to be working between us, he returned home, I came back soon after and we remained in contact.
I truly can't remember the exact details of that time but I know we were never in a serious relationship however I always enjoyed his company and considered him a beautiful person who i respected dearly. Looking back now I think we were both unsure of what we really wanted and it wasn't until, the best mistake of my life happened, did it all become clear.

Layla was conceived, we weren't married, shocking for some and I'm very sorry to those I may have offended. This unfortunately at the time is where a perfectly good relationship went very sour. No one person to blame and what followed was a very turbulent time in both danny and my lives that tested all boundaries of our friendship and whatever was left of our relationship. Suffice to say we became enemies overnight.

Time heals all wounds they say and that was certainly the case with us. Two years later, lots of sessions with a counsellor and the big decision to give our relationship a "go" for the sake of Layla was made.

My dad told me once when I was in my twenties " a marriage is like a job, you have to work at it everyday". I remember thinking "why on earth would I do that? And if I got married there's no way that's what I'm doing". Of course years later, several life experiences under my belt and a big chunk of maturity has me understanding exactly what he meant. My dad, right yet again.

Danny and I have worked really hard to get where we are and we continue to do so. In the beginning whenever times got tough we would drag ourselves back to the counsellor and work out how we can get through it and even to this day we are still working at it.

Last year was our biggest test without a doubt. The hardest hurdle we have had to jump and makes all the stuff we went through in the past look like chicken feed. We know we still have many hurdles to overcome and our day to day living has become one big hurdle. The worry about Jayden intensifies everything and we have had to work harder than ever before.
But with everyday we overcome I love him more. I remember my dad also saying "your mother loves me more today than the day she married me". Again that made no sense to me at all back then. But now it's as clear as the day is outside as I'm writing this blog. Crystal clear.

Tuesday, 1 January 2013

New Year's Day 2013

It's New Year's Day, the beginning of another year. We spent New Year's Eve with Danny's parents And are now on our way home.

It was a lovely evening, quiet but a good quiet. Don't miss the loud partying days at all and would much rather spend it doing what we did. With family and people we love.
Last night Everyone went to bed relatively early except Danny's mum and i. We sat up talking about the year thats been and i had a huge much needed cry. I was so happy she was there to listen and so grateful for her support. I miss my own mother so much and often wonder what she would have said to me through all of this awful journey. what advice she would have given and more than anything I miss being able to give her a cuddle. Speaking to Danny's mum last night in a lot of ways was like talking to my mum. she gave me some wonderful advice, got me to see things a little different and in a good way and just spoke to me from the perspective of someone who genuinely cares. To hear her words meant so very much and to have her listen to my fears, allow me to cry and give me a cuddle was so needed.
For me, a wonderful way to spend New Year's Eve.

By the time we got to bed it was late and I couldn't wait to snuggle up to my little man. A very hot night but that didn't stop me sleeping as close as possible to him. I didn't sleep well however and spent the night thinking about the year that's been. Not a good year at all. The hardest year I have ever lived in my life.

I'm tired now and so are the kids. They all had a fabulous time with their Nanna and grandad and are all looking like they are about to fall asleep in the car. I know that's what I'd like to do.

It's several hours later and everyone is in bed. When we got home we unpacked, settled in and later had dinner.
Everyone was very tired so it has been a long afternoon. But now I'm laying in bed listening to my dog barking at the neighbours cat and Danny's snoring which is equally as loud.

Jayden never vomited today but I found myself watching him like a hawk. He looked like his balance was a little off at one point and my heart skipped a beat. He is due his MRI in early January and I'm as nervous as anyone could possibly be. I really hate that i cant make this all go away and jayden be the well littleboy he once was. That's the really hard part. I'm his mum but I don't have any control over any of this. It's truly awful and extremely painful. I wish i could. i wish i could make it all better and it all go away forever.

As the new year has begun i hope with all my might that i find a place of acceptance of that and be the mum i can be. "Concentrate on controlling the things u can control" a very wise lady said to be in the beginning of this journey. the things i can control are loving him to bits, being there for him when he needs me, holding him when he's sad, and crying, laughing with him and just loving him. The Simple stuff.
Miracles I can't make happen as much as I wish I could and somehow I hope I find that place of acceptance and hopefully there I will also find some peace, a place to breathe.

My New Years resolutions is to make this year as much as possible full of happy moments, memories of lots of laughter and loads and loads of cuddles with my children. A year that will see Jayden healthy and well and ready to take on another year and many more years to come....



Jayden and Luke today:).