Thursday, 30 May 2013

Assessment

We took Jayden to the Telethon speech and hearing centre this morning as he had an appointment to be assessed. He was getting assessed to see where he was at with his speech and comprehension etc. I'm not sure what the official name of it was. He was really wonderful throughout the whole process and really made us proud ( not that we could be any more prouder). He did everything the lovely woman asked of him and he did it really well. She told us at the end of it that he scored equivalent to that of a 3 year and 7 month old! Clever little man. After all he's been through, so proud.

He was really proud of himself as well and after a short play in the playroom there we headed off home.

It's the evening now and my little man has just fallen asleep. There is nothing nicer than laying next to him, snuggled up and hearing and watching him sleep. Love this time.

I had a great day with him today and let the housework get forgotten about, scraps for dinner and piles of washing waiting to be washed. I'm so glad I did nothing and just hung out with my little man until the kids came home from school and then it was a bit mad trying to get organised. But.. Worth it. I certainly feel better for it.

Layla helped me get Jayden ready for bed tonight and he loves it when she's around.



Just loves his sister and she him.




A beautifully happy little man today. :)

Wednesday, 29 May 2013

I woke this morning to a big smile on my little mans face. He really knows how to start the day. He so reminds me of my dad whom no matter what was going on he would wake up cheery and smiling. It use to drive me nuts as a teenager but looking back now and even today I find him so inspirational. He never has a negative thing to say and even if his life is crap you would not know it as he would never say its so. Jayden is so much like him.

I feel all choked up today which always seems to begin after school drop off. A simple chat to a mum about choice of high schools for Luke and I found myself in tears, for the thought of not having that same discussion about Jayden is truly unbearable. The mum I was with, whom I barely know and whom I had only just found out her name embraced me in a hug as I cried. You never really know how much people care and I so often feel alone. essentially i am with my feelings and thoughts but i know there are people thinking of me and that's truly special. It meant an awful lot to me for her to do that and i so desperately needed that shoulder. i left her not long after as she chased after her little boy whom i think would be nearly two and it left me with thoughts of Jayden before diagnosis when i was chasing after him. the only stress i had then was him wondering everywhere and making it impossible to stay stationary for more than a second. The concern of what to cook for dinner that night and will the kids eat it was probably my biggest problem for the day. I still think about that of course but so much more is also on my mind now.

I do try and not focus entirely on the future, because if i did I would truly go crazy. But I think about it, I fear it and it saddens me greatly. Every time a piece of clothing is outgrown by Luke I hold it in my hands and hope with all my might that Jayden will grow to fit into it. Luke's Old shoes sit in Jayden's wardrobe and every time i open it i see them and wish for Jayden to walk in them one day. Each milestone luke reaches I hope Jayden does one day too. When I look at him I hope to see his face age that I see his smile on a man someday. So many moments, objects, occasions remind me, make me think and sadden me.

I sit here now at the kitchen table in our home and everyone is asleep. Alone with my thoughts yet again. In someways relieved another day is over as I know sleep will come soon and I will have a chance to feel nothing. To truly relax and let my mind rest. And on the other hand wishing the day was longer so that I may have more time with Jayden. Some days I worry I didn't maximise my time with him enough and that I didn't give him enough attention and worry i will regret that day. I want to have a normal life but to live it is impossible when its consumed with "living the moment". That its so damn vital to live the moment that normality just no longer exists and when it does it carries with it a barrage of guilt. Hanging the washing up when I should have played Lego, cooking dinner when a ball wants to be kicked. Danny picks up where I can't but I feel bad because I wasn't there all the time. That I should have been.

So I sit here now wishing for just one day things were normal. A few hours even. Where for that period of time everything was the way it was. Just to have that time out, just to have a chance to recoup, to breathe. Of course I wish for a lifetime, for our lives to be back the way they were but right now even a small break would be welcomed.

Jayden complained of a sore face today and i noticed him moving his mouth these last couple of days as If something is bothering him with his cheek. Upon examining it I noticed its red and looks like some sort of a rash. To any other mother it's just a "rash" to me, well, my mind just goes berserk. It never stops. There is no break, no finish line to say hooray it's all over. That's the biggest misconception that people have who haven't been through this. There's no end.

what i do know is that i am so grateful to have today. I often hate that I have to be and I wish I could be ignorant and just take the damn day for granted but I can't. I will always wish, hope and pray for millions more but I know I have to be grateful for every damn day I get.

I know Jayden is. From the moment he gets up in the morning with his beaming smile to the moment he goes to sleep snuggled into me at night, he is grateful. I watched him today with his bubbles he was playing with and felt so blessed to have him in my life, he has shown me so much in life and as a councillor once said to me "he's my greatest teacher". Shes right, Every time I feel like I can't keep going on he smiles at me or does something silly that makes me laugh and I just think "what an amazing little man, my little miracle". He truly is a treasure, a beautiful, loving little man and I just love him so much it hurts.













Sunday, 26 May 2013

Dentist

My little man had his first visit to the dentist today. I have not ever taken my other two kids this early but was told because of the treatment Jayden has received its important to have him checked early.
So today we went to the dentist with his brother Luke.

Luke was wonderful on the way there, telling Jayden how brave he will be and that everything was going to be ok. By the time we got there Jayden was pretty happy and seemed confident.

Luke went first and jumped up on the dentist chair with a big grin from ear to ear and making it look easy for Jayden. bless him,



Jayden was then called up and i was so nervous for him. not because it was a dentist checkup but because i know how traumatised he is from previous events and i was worried he was going to connect them together with this visit. Fortunately thanks to Luke, Jayden was fine. In fact he was happy to jump in the chair and gave the dentist a big smile when he did. beautiful. made me so proud.



When I think of all that he has been through not only does it make me cry but incredibly proud of my resilient brave little man. i know i could not have been so brave.

The dentist explained to me that the radiation to the brain he received can cause the mouth to produce less saliva and hence he will be more prone to bacteria in his mouth and then cavities. he also said that the treatment can cause his jaw to develop incorrectly and what he sees so far is the way its growing isn't what he would expect. I'm not sure what that all exactly means but it seems small pickings in the big scheme of things. So I'm going to try not to worry too much about it and he said we just need to keep an eye on it.

We left not long after with a new toothbrush and toothpaste and Jayden was so pleased. anyone would think he just visited Santa, very chuffed with himself.

We then had to take Luke back to school which jayden was not happy about and continue with our day. A spot of grocery shopping and on the way home jayden fell asleep. i thought he had finished with his day time naps but recently he has bought them back in, i hope it doesnt mean something bad.

I transferred him from the car, laid him on our bed and snuggled up to him. i love these moments and wish they lasted a lifetime. The smell of his hair, his innocent little face, sleeping so soundly. i know these moments will be etched in my memories forever, i will never let them go. i so love my little man.



- Posted using BlogPress from my iPhone
I'm sitting in a car park waiting for a shop to open and all I want to do is go home. Gone are the days I would enjoy time out from my kids. Now after 10 minutes I want to be back home with them or at least them with me.
It's the longest 10 minutes ever and so I thought I would write to pass the time.
I popped in to see my sister on the way which was nice but I have this incredible urge to "spill my guts" so to speak and have a good cry with someone and I didn't feel I could with her. I don't know why. I try so hard always to keep things up beat with everyone as I worry i will be burdening them with my problems when I know they have their own even though I'd love to swap.
So I suck it up and keep on going and quite frankly it's so damn draining and frustrating sometimes that I just want to scream. Cry as loud as I can and scream from the rooftops.

Instead I'm sitting in my car ready to go do some shopping for Luke's birthday party for next Sunday. Normal thing for a mum to do so normal mum face required. Five more minutes. Deep breaths.

Jayden woke up very chirpy this morning as he usually does but today he knows that his Nanna is back today, so super chirpy. She has been away for seven weeks and we have all missed her dearly. Meeting her at the airport and can't wait to see her face. Really missed her at Jayden's birthday and for the entire seven weeks.

He picked up his bag that we take everywhere with us to the kitchen in anticipation that we were leaving soon but I had to explain to him that 5:30 am is not the time to be leaving. It's not really the time to be out of bed on a Sunday morning either but when it's with my little man I'm loving it.

It's open. Off to quickly shop and get back home to my kids.

Back home and i get the hugest welcome from my little man but a "what did you get us?" from the other two. beginning to think I might be spoiling them just a tad. Hard not too and not likely to stop, however today I actually didn't get them anything. Not exactly anyway. Lukes birthday is this coming Sunday and I'm desperately trying to find things for it and so far I just managed to get some plain loot bags that Layla is going to decorate and some cake decorations for a birthday cake I'm going to attempt to make. A little nervous to say the least as he really had his heart set on one of the same standard as Jayden's and that's just not going to happen. I'm hoping by Sunday he would have forgotten what Jayden's looked like and be well impressed by my attempt of a football field cake.

Thats the tricky bit about his party is its football theme and do you think I could find anything remotely football themed in the way of party supplies? No. Hence there will be a lot of craft work going on this week.

We are now all in the car and on our way to the airport. Jayden and Luke playing in the back and Layla quietly sitting listening to her Ipod. I'm tired today and I can feel it now as I'm sitting and writing this blog. Jayden hasn't slept the best these last couple of nights and woken quite frequently from 2am onwards. I've always found it hard to get back to sleep once woken so fairly struggled to get a good nights sleep. Always worrying something is keeping him from sleeping well and worrying what that could be.
Images of past procedures pass through my mind and thoughts of the future encompass me. A merry go round of thoughts and sleep just doesn't want to come.

The Lack of a goodnight sleep often makes it even harder to keep it together emotionally during the day but I'm not doing too badly so far even though deep down I just want to fall apart. I really do feel that I'm held together by a thin piece of string and the slightest nick in it will cause it to snap and send me crashing down into pieces. That I'm constantly feeling tense and anxious. Nightmare.

Nearly at the airport and loving listening to my boys laughing. They truly are the best of mates.

Just met Nanna, now heading back to her house. Great to see her. Brought back heaps of memories of when we arrived back from Chicago after nine weeks. Feelings of relief to be home but fear of what laid ahead for Jayden and a sense of sadness for leaving new friends behind.

On way home now after spending the afternoon with Nanna and the rest of Danny's family. Really lovely afternoon. Felt a bit stressed when I got there but it was so good to see everyone.

So it's nearly the end of another day. I look back at my little man and he smiles. Precious.
I live for them smiles.





Friday, 24 May 2013

Zoo

It's Friday afternoon and I'm sitting out the front watching my little man play with his truck in the sand. It's his favourite place, outside and in the sand. Fortunately the weather has made it possible for him to enjoy both.

We were up early this morning having our cup of tea together then Danny had to work and the kids off to school. Always feel lost when they are not around.



We have been to Gymbaroo this morning and as always he loved it. I still struggle being amongst other mums with kids the same age as Jayden but I know that's my stuff and somehow I need to manage it. On the outside I do, I smile at everyone as they walk past and say hello to those that say hi and keep it up beat for Jayden. I do tend to avoid any conversation with other mums however as it often feels odd to just chat about stuff and things when my life is so much more complicated than that. I just rather not. It requires more pretending and that's just emotionally exhausting.

I've had a few rough days of late and by yesterday morning I was feeling a bit of a mess. I suggested to danny that we take the kids out of school and we spend the day together, I didn't care what we did I just desperately needed to be with them all and I didn't want to wait until the weekend. Of course as always he was ok with that.

So to the delight of Luke and Layla we stayed home from school and instead all went to the zoo. I haven't been to the zoo in ages and I'm certain Jayden doesn't remember the last time he had been either.

It was most certainly just what I needed. All of us needed. A reminder of what's important and the making of beautiful memories together. A truly lovely day.

Everyone was exhausted by the time we left in the afternoon and Jayden fell asleep in the car on the way home. When we got home we transferred him into our bed and Danny was so tired he laid down with him. Luke and I then popped out to do a bit of grocery shopping. Always nice to spend a bit of one on one time with him and Layla as it doesn't happen as often as I'd like.

As we walked into the shops I heard a voice call my name and when I looked back it was an old friend from school. Lovely lady. She came over and gave me a big hug, told me she had been following Jayden's face book page and was just truly lovely and supportive. I try very hard not to discuss too much in front of my kids in fear that I will start crying and I know they have seen plenty of that so she gave me another hug and we said our goodbyes. As I walked away from her I felt a tear escaping but in an effort to keep the mood from the day to continue I held the rest in. Luke took my hand in his and said to me "I love you mum". And I said " I love you too", he knew. They know. Children really are far more clever than we believe them to be sometimes and he knows its hard. Beautiful little man, love him so much.

Our day at the zoo in pictures:


Watching the meerkats.



Jayden and Luke eating some lunch at the Zoo Cafe.




On the ferris wheel.






Playing on the slide and with the water fountain.



On the rainforest walk.




The end of a beautiful day.

Love my kids.

Wednesday, 22 May 2013

Im feeling so lonely at the moment and I know I shouldn't. I have my beautiful little man next to me playing happily with his cars but I have this sadness in my heart that just won't go away. I'm cross with myself for not having the ability to just shake it off as I worry I will live to regret not fully enjoying these moments.

I know its time I need to see someone and get this stuff off my chest and move on. I went to make an appointment today but couldn't decide whether to go back to someone I've already seen or try someone new. I think I'm just hoping to immediately jell with someone and get some sense that "this is the person I need to see". I honestly feel like I'm going crazy sometimes.

I'm still going to give the Buddhist classes a go but they aren't till Tuesday and right now that's feeling a very long way away.

I made a point of getting out of the house this morning with Jayden so I would be distracted. We visited a lovely woman in the morning and then went for lunch by the river and it was really lovely. Definitely my best moment today. But now we are back home and I'm feeling yuck again.

Jayden hasn't done his coughing thing again but I'm watching him so close now its ridiculous. I find myself almost seeing things that possibly aren't even there.
Definitely feeling like a nut, now.




I know I should stop worrying as it won't change anything and I feel guilty for being sad as there are so many out there so much worse off.
So I also find myself sad for being sad, nightmare.

It's later in the afternoon now and I feel like I've shaken the worst of it off now but will always wish I didn't have to spend my days fighting a battle to keep things together.

My kids are home from school and with me and that's definitely when I'm my most happiest. The thought of another day nearing the end also brings some relief.

What I wouldn't give to get on with my life and off of this awful emotional roller coaster. I know it doesn't stop however, as this journey doesn't , and everyday I fight the fear and worry in order to get through to the next.

My dad just walkwd in and asked whats up? tell me, he says. whats wrong? he says. "Same as always dad. Just trying to get through the day as if everything is normal, when its far from being normal" I say.
He knows. He also knows there's nothing he can do to change it for him. So I guess he's sitting exactly where I am.

It's much later now and we've had dinner and I'm cleaning up to the sounds of my children playing in the lounge room. Danny's home after being at work all day and I'm so glad to see his face. He bought me a huge Rocky road heart shaped chocolate on his way home and presented it to me after dinner. We all ate it together, yum. He knew I was having a tough day and I missed his company terribly today. Nice to have him home and us all together. That's my peace.

Tuesday, 21 May 2013


I bought some bedroom furniture for Jayden online the other day and it arrived today. It's the first time I've thought of and or bought something for his room to make it more organised and look good. It was just some storage shelves from ikea but they look great and now his toys have a place to go and his special things displayed.

It felt good to do it. To start to think about him being around to enjoy them and I loved assembling them with him. It was even more special to be putting his stuff in them with him.

He was so happy and very proud of his new shelves. And he now sees his room looking more like Luke's, which is very important to him. I relished in the feeling of doing something positive and hoped it would stick around for a while.

When we went to bed tonight however that feeling was soon destroyed and replaced with the feelings i have become so familiar with. Jayden fell asleep quickly as usual and told me as always just before he nods off "love you mum, best world" and I tell him and i love you more than anything in the world too". I lay next to him, snuggled into his warm little body and waited for him to sleep and I fell asleep too. But was woken only moments later to Jayden coughing and a very near vomit. He threw a little up in his mouth and however little it was he swallowed it back down again and went back to sleep.

Suddenly I felt sick, lost and very damn scared. i got up pacing the house with anxiety that was suffocating. One minute I'm feeling ok and the next I'm right back in a world of pain. I tried to busy myself with ironing and a bit of TV but all I could think about was Jayden. Im so bloody scared its insane.

I walk into his room to put clothes away, look at his new bookshelf and instead of feeling proud I feel sad, frightened and incredibly worried.

Every little sign that something may be different frightens me beyond belief.

I really hate living like this. In A Constant state of fear.

I'm laying next to him now and i look out my window, a tear falls and when i swallow it hurts. Every night I go to bed I look out my window and wish upon the first star I see. Something I remember doing as a child. I don't need to say what that wish is and right now I'm so scared it won't come true. There are no stars out right now as its cloudy and I worry its a bad sign.

I'm really at a loss. A loss of how to live like this, how to sleep with this worry and how to manage the helplessness that I feel. I have no control of this and that's the hardest part. My little man, I'm meant to protect as his mum and I can't. It's out of my hands and its truly frightening.





Sunday, 19 May 2013

Photos from Jayden's 3rd birthday

I didn't post all these photos on Jayden's Facebook as I didn't want to inundate people with pictures. But thanks to lisa at Lilypad photography we have some beautiful memories now in pictures and I wanted to share them on this blog.



The cake made by Julie from Queen of Cakes was truly amazing, as were her biscuits that Jayden adored. I spoke with her today and not only are her cake making skills amazing but she truly is amazing too. A lovely, wonderfully kind woman that I so wish I had had a chance to give a huge hug of appreciation. Truly lovely person.








Nadjas famous jelly oranges are a huge favourite of my sons Luke so he was happy as soon as he laid eyes on them.



Louellas cupcakes were amazing as was she and her beautiful family. Thank you Louella and thankyou for your most thoughtful gifts. Another two ladies Nat whom I unfortunately didn't get to meet bought equally delicious cupcakes thanks to Byford Bakery.
This entry is turning out to be a big thank you message but its hard not for it to be as there were so many people who gave their time to make Jayden's day special. And even though he wasn't hugely excited about it all and at times quite unhappy it was still very special and everyone that came had a wonderful time.

So thank you also to Peta who bought some really yummy sausage rolls and Natalie for a yummy fruit and vegetable platter.



Ben from Oasis fresh bought his Ferrari and took those that wanted, a ride in his amazing car. Although Jayden wasn't interested Danny and Luke were the first to jump in.







Spotlight gave us lots of pirate goodies to play with and even I couldn't help adding a patch.






We got our faces painted thanks to RosieO who also supplied a bouncy castle and fairy floss and balloon animals. Amazing woman. Wonderful person. Really love this lady. We will definitely see her again soon I hope.






















Jayden's favourite present was his pram thanks to his favourite uncle Steve and beautiful wife Heidi. From the moment he got it all he wanted to do was go home and put his baby in it and since then we have been on many walks with it.


Like today. My wonderful friend gave him a boy doll today also and he's most impressed that it has a 'willy'! We haven't stopped walking.

As we walk down the street now he says "want to see Aoife" our dear neighbour. I remind him she doesn't live there anymore and he stands in silence for a while. I feel an overwhelming sense of sadness for him and then he says " doesn't matter, lets pick a flower". God I love him.
His amazing ability to "just get on with it" I am in awe of.



So we just swiped a flower from her garden.

Back to the party and a few hours later.




Jayden and danny.






Jayden at his most happiest on the slide!



And with his best buddies!



Encore kids parties provided a beautiful fairy that although was a bit lost as to what she could do when the kids were all spread out and Jayden not being in the least bit interested, she was beautiful. She tried her best to make the kids all feel special and made a huge effort. Just beautiful lady.

All these people came together for Jayden. Thanks to Marcee who organised it all to happen and Nadja who helped orchestrate it. Very, very special ladies.

I know on the day when I posted about Jayden's birthday it was hard. The whole weekend was difficult and I wasn't able to truly thank the people that helped like I wanted to as I had so much going on in my head. Today as we get further away from the day I am able to see his birthday for what it was. A beautiful day celebrated with truly special people. Jayden may not have been as happy about the party as I hoped him to be but a very dear friend reminded me that it wouldn't have mattered what we did I would always have wished it more perfect. My fear of it being his last made it impossible to make perfect. Everyone that went had a lovely time and even though I struggled, it was a great party and a beautiful day. I will remember it as a day that had expectations that no one could possibly meet but one that so many people made a huge effort to try to do. That's pretty special in itself.







Saturday, 18 May 2013

Jayden turns 3

Jayden turned three today! A huge milestone. We are so very proud of him.

I filled the room with balloons last night and laid awake watching him sleep this morning waiting for him to wake. I had had a shocking night sleep and had been awake for sometime. I watched his little eyes slowly open then adjust to his surroundings and when his eyes focused on the balloons a big beaming smile stretched across his face. "My birthday today mum". Yes! That moment made my day, there and then. If nothing else happened for the rest of the day I would have been fine as that smile was all I needed.

The kids were so excited to give him his presents and we all piled on the bed to help him unwrap them.



He was just so happy. His favourite presents were his shopping trolley I bought him and a dolls pram he later received from his uncle and auntie.

We spent the morning putting toys together and a bit of rushing around to make it to his birthday party that was being held at a local park on time.

I was pretty stressed about it all and Jayden was not in his best form. Mainly because he had just been given a gift from his grandad before we left home, didn't get a chance to play with it and wanted to bring it with him. I had told him he could but in the rush to get there in time I had forgotten to bring it. So he arrived at his party already wanting to go home.

It was a lovely party and everyone had a wonderful time thanks to the generosity of so many lovely people.

Jayden was however out of sorts for most of it which always makes me feel the same and there were moments I just wanted to scoop him up and go home. That's all he wanted to do after arriving there and kept asking me if he could for most of the day. I so wanted it to be perfect for him and him to be so happy but I think my expectations of that were way to high for a three year old. He just wanted to be home, home with us, playing with his toys. And a big part of me did too.

But my other kids had a blast, and so did everyone else and that's a great thing. And there were moments where Jayden was having a good time, just short lived.

Anyway, we headed home a couple hours later and when I got home with Jayden I felt a huge need to cry my eyes out. I don't know if it was because Jayden was not super happy for his birthday and i didn't achieve what i had so hoped for him or whether the sheer lead up to today and the enormity of the week, past etc was what was hurting me inside. but what I do know was I felt so damn lonely and sad.


I eventually did have that cry but not around Jayden but with my friend Nadja. I still didn't feel any more relieved and the sadness didn't go but then I received a text from my friend who's daughter passed away last week. It was that moment that I realised I absolutely have to pull myself together and enjoy this day no matter what. My fear of the future is not going anywhere and my sadness of my life I now live isn't either but I will always try my damnedest to get through each day always remembering to be thankful that I have it with all my children.

We ended the day by going out for dinner to our favourite Italian restaurant. It's cheap, brilliant food and the kids love their spaghetti bolognaise. Jayden was in much better form and i was so relieved we did that. it couldn't have ended the day better. His smile makes me smile as does all my kids.

I'm tired, I need to sleep. Nadja, took this picture of Jayden today at the party and it makes me want to cry. The innocence in his face, his face reflecting his mood this morning and the need for me
to always want to make his life so perfect. I love him so very much.



Friday, 17 May 2013

Its been three days since I last wrote in this blog and three days thinking of my friends sad loss of her beautiful daughter. Every morning I wake I think of her and others whom have lost their children to childhood cancer. Even though I may not mention these thoughts in my blog everyday, they are there. A day does not goes by where they are not. in my heart and mind these children will never, ever be forgotten. And every morning i wake and look at my little man, and I know how lucky I am to have today. My fear of the future will always be there but I know I am truly lucky to have today and will never take that for granted.

Wednesday

Jayden had an appointment this afternoon to see Dr Nick. It was set right on school pick up so Layla had to pick up Luke and we organised for my dad and his partner to be at home when they got there.

We left giving ourselves 40 minutes or so to get there on time
knowing we also had to speak to a doctor regarding some research. We didn't know what it was all about and so we were a little anxious to say the least. By the time we drove there Jayden had fallen asleep in the car. We waited in the car park for a while so he could get some more sleep but eventually had to go in. Thankfully He transferred easily in his pram and remained asleep as we walked in to PMH. A sick feeling always overcomes me when I walk through those doors and an even sicker one when we reach ward 3b. The only consolation is seeing the familiar faces of nurses and staff whom always greet us with a smile and stop to say hello. Some are obviously more special to us than others and for me it is those that have sat by my side and listened to my cries and consoled me at my darkest moments. Truly beautiful people. For those that were always so kind to Jayden he also of course had his favourites.

Jayden was still asleep when we arrived and the doctor who is doing the research came out to see us with an oncologist we are familiar with named Dr Rishi (not sure of correct spelling). lovely man, we like him a lot.
They went on to explain to us that the research was about the effects of the flu vaccination and another vaccination that's name eludes me right now but its the one that prevents phenomena. Anyway the idea is they first take Jayden's blood then give him the flu vaccination then check 4 weeks later with another blood test as to whether his immune system has managed. Basically this is to see if he will need another booster shot as apparently it is critical he is protected from the flu as his treatment has put him in the high risk if he were to get the flu. Meaning, potentially fatal. Not good.

With that in mind off we went to get his blood taken, and thinking how super vigilante I'm going to go back to being about bugs! All the while Jayden is still asleep.
We arrive at the blood place ( cant think of the correct name right now) and Jayden is finally beginning to stir. thank heavens for that as we didn't want to wake him just before. Danny was still feeling wary about the "research" and when ever that word is mentioned in the same sentence as Jayden's name we are both concerned. However i felt confident this was a necessary thing to do for Jayden's safety.

Fortunately the phlebotomist here are fabulous and as always, quick to find a vein, draw blood and done. yah for these ladies i cant praise them enough. Jayden was of course still very upset by it all and I am certain he is extremely traumatised by his previous experiences.

We left there with a very distraught and scared little man whom was now repeatedly asking to go home. Where we all wanted to be. But back to ward 3b to see Dr Nick. No sooner did we walk in the door than Jayden really amped up the volume and was screaming to go home. Fortunately we were able to calm him long enough for dr Nick to do a quick examination a quick chat about everything and away we went.
Unfortunately we weren't going home just yet and instead had to go into the "treatment" room for a flu shot. When we walked in Jayden was in a full scale state of distress and new all too well what can happen in this sadly familiar room.

Fortunately today it was just a flu shot. He cried the whole time we were there and luckily it was quick, they asked him if he wanted to pick a toy from the lucky dip box but he said 'no', just wanted to get the hell out of there and go home. Which we all did.

Friday
It's Friday now and I've spent the morning rushing around doing last minute shopping for my little mans birthday tomorrow. He's turning three!

I'm so excited. I can't wait to see his little face tomorrow morning and I hope it will be everything he would like it to be.
I'm so proud of him.

He's asleep now next to me and fell asleep in my arms. Tells me he loves me every night before he goes to sleep as I do him and we snuggle tight until he falls asleep. That's when I usually have to break away and join the other kids and get them ready for bed. Tonight however we will be wrapping Jayden's presents together. Very excited.

I know that no matter what happens, it's going to be a great day. Whether it pours with rain, thunderstorms or sunshine its going to be great. Because my little man is three. All I can wish for is that I see so many more birthdays. That I'm giving him a big squeeze at his 21st and holding his kids at his 40th.

I so wish for that.





Tuesday, 14 May 2013

Standing in the shower this morning, hot water running on my face. Overwhelming mixed feelings running in side my mind. My friends daughters funeral is today. A big part of me is nervous and extremely worried about how hard it will be to be there. But with my feelings aside i have an overwhelming need to be there for my friend that far out ways how it will be for me. Danny doesn't want me to go and said himself that he couldn't as its "too close to home". I understand what he's saying but I also know how damn lonely this journey is and I don't want her to be or feel alone today, without seeing a face that understands to some degree.

My daughter walks in as I'm getting dressed and notices I'm not in my usual casual attire. She asks me where I'm going and I'm hesitant to tell her but eventually do.
She asks me if its the little girl that came to our house with her parents a while ago and I tell her yes. Her face turns to sadness and I think she's about to cry. She says "but she is so cute mum, she didn't look sick". "I know" I said and am lost for any more words of explanation. We stand there in silence for a while and she says "it will be very sad mummy for you". I said I know dad doesn't want me to go. She thinks for a bit then she says" I think you should mum, she will need to see you there".
She's right, yet again and I continue to get dressed to go.
If I ever believed in reincarnation id easily be convinced my mum came back as my daughter.

The funeral Isn't until late morning so I continue to busy my self with morning stuff and things, trying best not to think too much about anything. Impossible of course.
I dropped my son and daughter off a school and as I leave I'm in tears already, for my friend. I walk passed mums with their babies and it pains me to know my friend no longer has hers. I envy these women. They have no real idea of how truly lucky they are. No notion what's so ever of what my friend is doing and feeling right now.

I arrive back home hug my little man tight and sit and play Lego with him until its time to go. I watch him as he plays, gently tuck his hair away from his eyes and try desperately to hold back the tears. Inside my heart is aching and I'm so overwhelmed by the sadness of another child dying.

I leave soon after, the drive is a half hour or so. My head spinning with a million thoughts, all about my friend, her daughter, Jayden and this whole crappy childhood cancer world I'm in. I truly hate it.

I arrive, park the car and join everyone outside the Chapel. I'm not going to write anymore but to just say it was a beautiful service. My friend and her husband were amazing. Beautiful parents, beautiful people and their daughter, so very precious.

I hope that everyone that was there realises as they left that service how very lucky they are. That they appreciate every second they have with their children and not take one second of it for granted.

I drove home with the sound of the engine in my ear, no radio. I felt numb. I couldn't stop thinking of my friend and her beautiful girl.

i pulled up in my driveway and I could hear Jayden squealing with delight that I was home. i raced up to him and scooped him up in my arms and gave him the biggest cuddle. as i hugged him I wished with all my might that he will never leave me. and i know that like everyday, i will never ever take a second i have with him for granted.

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Sunday, 12 May 2013

Mother's Day

Today i awoke to my three beautiful kids keen to celebrate Mother's Day with me. Well to be honest, two of them were very happy but one had woken very cranky and was not in the least bit cooperative about anything for the morning. That aside, all was lovely but I don't need a day to remind me how lucky I am that my three kids are well, happy and with me. Everyday is a happy Mother's Day when that's the case and even when ones grumpy its still a happy Mother's Day.

So today for me, was just another day but one that saw my kids try to go out of their way to make it special. Layla was truly amazing and my house is now spotless thanks to her. which is hilarious considering she is the worst culprit for making big messes, especially with her elaborate indoor cubby houses that she makes. She tends to use every piece of furniture, linen and toy in the house to create them. However now it is all packed away and tidy and so is the rest of the house. Nice.

I was given a nice pair of PJs and socks and some beautiful cards and drawings that i love and will cherish. we spent the morning watching Luke play football. And home for lunch, some gardening, bacon and eggs for dinner and now bed.






I'm now laying next to my little man as he snores but my
mind is with my friend who lost her child to cancer recently. i thought about her a lot today and of my other friend that would also be spending her first Mother's Day without her child. Mother's Day truly should be to acknowledge those mothers whom no longer have their babies with them. I read a quote today that says : " On Mother's Day I can think of no mother more deserving than a mother who had to give one back"- Erma Bondeck
Erma is so correct.






Friday, 10 May 2013

There is no doubt that this time, right now, today, is a time to be very grateful for in my life. The future is unknown and when I go there in my head its truly painful. But today the five of us are together and we are all ok and that's so precious and truly a gift.

My fear of the future is always there and fuelled by the reality of Jayden's condition, the knowledge of other families children also fighting cancer and the very real truth that many lose that fight.

The other day I received a text from a wonderful lady and friend who I met in the beginning of this nightmare. We were on ward 5a and Jayden was recovering from brain surgery and no one yet knew he had also contracted meningitis. This family shared a room with us for sometime with their beautiful daughter whom also had brain surgery for a tumour.

Both loving parents, wonderful people and a truly beautiful baby girl. She wrote in her text that Their baby girl had lost her fight with cancer. I truly wish that there had been something i could have done or changed for this family so that they would not have suffered such a tragic loss and now live the pain of life without her.

It makes me ask the question again and again, "why?" Why any child? I wish I knew the answer for it makes no sense that this should happen to any child.

When you enter this world of childhood cancer you forever know sadness and pain. Not just your own but others travelling similar journeys. Your life is no longer ignorant of this dreadful disease and the knowledge of its destruction is devastating. A constant reminder of my sons unknown future and the very real fear of what could lie ahead.

Every time I turn on my computer I read about another families fight or loss and its truly crushing. It's crushing because you know their journey all too well and the helplessness of not being able to change it is overwhelming.

My son is well today. He's smiling and he's doing what normal two year olds do. He may not be as steady on his feet and he may not hear as well but he is with me. For that I am eternally grateful and for that I never take a second of my time with him for granted. No mother or parent with a child with cancer or any serious illness for that matter, does.

Hearing of my friends loss of her beautiful child made me sad, scared and guilty. sad for her and her family, scared for Jayden's future and guilty that I can still hold my child while she mourns hers.

Truly this is tricky. Im constantly searching for ways to manage life as it is for me now and today was no different. I went and saw a woman today who is a Buddhist teacher. She took the time to meet with me and the moment I walked into her room I started balling. I was a little embarrassed as I wasn't there to be counselled, only to see what meditation and classes they had to offer. But whenever i find myself in a strangers company who asks me my story, out it comes. Like Niagara falls, a flood of tears and emotions kept inside everyday just to cope with the day comes pouring out.

I had purchased a book titled "Buddhism for mothers" that a lovely person suggested i read and After reading some of it Last night I thought it was worth looking further into it. So here I sat with this woman today balling my eyes out and letting her know why I was there. She was honest and frank, she said " there is no quick fix to your pain. What you are going through is enormously stressful and no faith or learning will take that away. " I knew she was right, that there is no quick fix, as much as i wish there were. I know that this is my life and what i need is help to live it as well as I possibly can for the sake of my family and myself . I said this to her and she believes through meditation I will learn to quiet my mind and get moments of peace. I'm going to my first session on Tuesday.

I sit here now with my two big kids watching a movie on TV and I'm so grateful for this moment.
my little man is snoozing in bed and I'm looking forward to joining him. Jayden's had a good day today, better than the previous ones and not as quiet as he has been. More smiles. But he does have a cold, again. He's also still got his cough. It has never really gone. I still panic every time he coughs as it use to be the first sign that he was going to vomit. I know I'll never stop worrying, or fearing the future and the news of my friends beautiful baby girl fuels the fear, the worry and the sadness.

I wish more than anything a cure for childhood cancer be found, so no more children suffer this dreadful disease and no more parents lose their precious children.

It truly sucks.

I can only hope like every other parent with a child with cancer that Jayden be that % we are all given. I can only hope my son is one of the 10% and like my doctor said "miracles do happen and you just have to believe Jayden is one of them".
I just have to believe, hope and never, ever give up.



Jayden and his big brother in their matching pjs tonight :)


Jayden at our neighbours house, olives! Yum!


Big smiles today! yah for them :)


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