Friday, 30 November 2012

Virus

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

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

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

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Thursday, 29 November 2012

Results from CT and EEG

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

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

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

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

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






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

Wednesday, 28 November 2012

Seizures

No sooner did we get home from the hospital today and i began to think something was up. Jayden was really sleepy and laid in my arms during dinner saying nothing and just didn't seem himself at all. I wanted to assume it was because of the virus but it just didn't sit well. He had his bath as normal but didn't want to stay in. He wouldn't stand for me to get him changed but I assumed it was because he was unwell also. Then I put him to bed to read him a book and before I could begin reading him a story he was asleep. Again, I assumed it was because he was unwell. I then got Luke and put him to bed with a book and as I was reading it to him Jayden began to stir. He was firstly making some odd sucking sounds so I watched him closely and it didn't seem too bad. Then he suddenly woke, sat up and started complaining about something hurting and then laid back down on the pillow. i went to him and rubbed his back and watched his face, he was awake. his eyes then started darting up and down. I picked him up in my arms and held him and tried to talk to him and ask him what he's doing, but he wasn't there. I knew instantly something was wrong. I raced him up to Danny to tell him something's up with Jayden.

We rang the hospital immediately and made arrangements for someone to be with the kids while we went in. All the while Jayden seemed vacant and wouldn't speak. On the drive in he watched me for a long time then fell asleep.
I balled my eyes out all the way in. I can't believe how absolutely shit this is. I kept thinking to myself 'I'm not ready to lose my baby, not now. Please not now'.
We arrived at the hospital where he was examined by the doctor on duty who told us he had had a seizure. By this time though he was back with us. Talking normal like nothing had happened but still sleepy and is sleeping now. I don't know a lot about seizures other than they indicate pressure in the brain and I'm scared. they are planning to do a CT scan now so a line has to go in- shit. He's sound asleep and none the wiser and I'm dreading him being woken up for this awful, stressful and scary event.
This nightmare truly never ends. When you walk out those doors it's never for the last time, at least it doesn't feel that way for us.



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On way home :)

We are leaving the hospital now and with Jayden- thank goodness!
He finally got the all clear after being there all day and I'm so damn grateful for that. both Danny and i are so relieved to be driving out of there with Jayden in the car. We hate going back in there. I find from the moment I walk through those doors I want to cry and usually do. Today was no different. It's just a place you never, ever want to have to take your child and going back is a reminder of what our son has, what he's been through and what could be in his future again. I hate it. I do however love the staff and nurses. It takes a special kind of person to work in that place and there is no doubt that ward is full of them-special people.
We arrived there this morning and because of the risk of infection they put us in a isolation room. the nurse came and took all his obs and found he had low blood pressure which she attributed to dehydration. The doctor on the ward came to see him next up and recommended some ondancetron to help prevent the vomiting so he could keep some fluids down to help with the dehydration. At this point they were assuming a gastro bug but couldn't be sure. We gave him little sips of water every ten minutes but all he wanted to do was sleep. His temperature got quite high and he was given some Panadol after Dr Nick saw him. Fortunately Dr Nick didn't think it was tumour related and that obviously is a very, very good thing.
We expected he would perk up after the Panadol but he seemed to take a turn for the worse and was complaining that something was 'ow'. He wouldn't let me touch him and it set alarms bells off in me that maybe this could be another batch of meningitis. He behaved exactly like that when he had it before. Another hour passed and fabulously he took a turn for the better this time. He sat up and was happy to be in my arms again- heaven. He did a wee in the sample cup we had and then wanted to go home. Yah!
We are expecting he won't be back to his normal self just yet but I'm just glad to be out of there and him not vomiting at the moment. Yah for that. They still aren't sure what it is all about but are assuming for now its some kind of virus. Dr Nick won't be starting him on his steroids now because he is ill but hopefully he will be better come this Friday and they will start him then. He's planning to give him a short course that will last 10 days that we hope will see a decrease if not completely stop his vomiting in the morning. I do hope so.
So now we are in traffic on our way home. Jayden's asleep, whatever he has its definitely knocking him about. But we are going home and that's a good thing. It's busy, peak hour traffic but we don't care. It's just so damn good to be out of the hospital.

Lots of sleeping today ...


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Tuesday, 27 November 2012

Up all night

Jayden started vomiting last night at 9:30 and didn't stop. The first was 9:30 the second 10:30 and then every ten minutes after that for over an hour, then every half hour. We rang the hospital a couple of times but decided to sit tight till the morning provided we could get him to take sips of water in between. It started to ease off early in the morning so we all managed to get a couple of hours sleep but started up again as soon as he woke. He had a temp with it as well so we are hoping it is some kind of virus rather than tumor related. How things have changed in our lives- actually 'hoping' its a virus because the alternative is devastating. Scary.

We are now on our way into the hospital after dropping the kids off to school and Jayden has fallen asleep in the car, a much needed snooze without a doubt. I would love to be joining him but the ability to fall asleep anywhere that I had as a child has long gone and now only my bed will do. Even with that though I find it difficult. But enough about me it's my little man I'm worrying about. He's pale and no doubt feeling like crap. I hope if it is a virus it passes quickly for his sake. After all the chemo he has had it has left his immune system not at all in good shape so he is more prone to infection and sickness than his siblings. This apparently will always be the way. Poor little mite it feels as if he just doesn't seem to get a decent break. I'm so sad for him and wish so much I could take all this crap away from him.




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Monday, 26 November 2012

Appointment

I emailed Dr Nick yesterday to find out what the plan was for Jayden. He's still vomiting in the morning and Danny and I are worried about his speech. We think he's getting more difficult to understand. Dr Nick replied later asking us to bring Jayden in to see him this Wednesday and the plan is to start him on steroids. i was also concerned about the date of the next MRI so he is looking into that as well. I don't think my mind would ever be at eases unless i had my own way of checking every morning that there was no tumor there.
Damn nightmare.
Not looking forward to the steroids starting as if last time is anything to go by we will have an angry, chubby little man. The chubby I don't mind thats good because he's so skinny at the moment, but the angry- not nice. It's awful for him as well because he doesn't understand why he's so angry at times.
More nightmare.

Its early morning and we are sitting out the front of our house, it's cold but my boys are running around with T-shirts and shorts. I'm super cold with my old pj bottoms on that I won't throw out even though they have a huge hole in the bottom of them and the brickwork I'm sitting on is cold on my legs. But I have a fabulous view of my beautiful boys having fun with a ball so can handle the cold for that.

Yesterday we got a glimpse of the family photos that were taken the other day. They were great and I just wanted to cry when I saw them. It made me so happy to see us all together in one picture smiling and there were some lovely ones of the kids together too. Really excited about
Seeing them blown up and on our wall to look at everyday.

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A tough day

Last night as we all lay in bed and after the lights had gone out Luke asked me," mum, is Jayden still sick? Does he still have his cancer". I replied "no darling he doesn't have his cancer anymore". "Will it come back mum?" He asked. "It could". I replied.
"I hope it doesn't mum, I don't want him to be sick again".
"None of us do sweetheart" i said.

He went to sleep shortly after and I lay awake, eyes wide open, thinking about what he said. He knew from the conversations that we have had that other children like Jayden have their cancer return. We all know this can happen. I laid there with that tight feeling in my chest and the sadness in my heart and turned to watch my little mans face in the darkness. As a mother this is no doubt the hardest thing in the world to face- the very real possibility of losing my child. i try not to think about it, truly i do. But I watch him now and see him as the beautiful boy he is, the baby he once was, the first time I held him, kissed him, laid with him. Every time I went to him in the night when he cried, so many memories and thoughts swirl around in my head as i watch him. I love him beyond words and I truly can't bare the thought of losing him. I'm so scared.

I held him in my arms tonight for the longest cuddle he'd let me have and thought about how grateful i was that we were sitting in his room and not on a hospital bed. I know as I'm cuddling him and with him at home there are others in there doing what we did and it scares me beyond words. I am so frighten of having to go back there, of having to walk through those doors again with my son.
It's no way to live, I know. I spoke to a man today who reminded me of that as that has been what he has been doing with his wife. Wasting time worrying about the future. But I know it's there and I'm frightened. I always will be because I love him and I don't want to lose him.

I thought I was doing ok today and was managing but as the day went on I could feel myself becoming more fragile, then finally a text message from a dear friend sent me crumbling.
This journey is so hard on so many levels its truly overwhelming. I find myself not knowing how to relate to people the same way I could but needing to so badly. I'm trying so hard to keep my feelings at bay so I can live on some level of normalcy but its almost impossible. By the end of a day of trying to do it 'normal' I'm in a heap. I think I'm coping and about to pat myself on the back and out flow the tears, fears, anxiety and sadness.
It's when I'm on my own and no one can see me, like now as I lay in the darkness with my little man that it comes. I wish our lives were so different. I wish this pain in my heart was not so agonisingly unbearable, that my son was the well little boy he once was. As my tears fall I lay watching him sleep and I wish with all my heart that I can watch him sleep a million times more. That I see his beautiful face on a man and his face on his children.
That's what I wish for.


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Saturday, 24 November 2012

End of break


Our time away is over and we are heading home. Goodbye beautiful home, trees and lovely beaches. Although it was difficult to wind down like I would hAve liked too, we still had a wonderful break. The kids especially did. They didn't have to worry about us going to the hospital and waking up in the morning and finding one of us not there and of course they enjoyed a week off school.
It was so nice to see them so happy together and without a doubt many much needed laughs were had. Thank you to the beautiful family who allowed us to stay in there home. Our family is living our worst nightmare but amongst all the sadness we have met some beautiful people and gained some wonderful friends . This family is definitely one of them.



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Friday, 23 November 2012

New normal

I just finished reading a blog entry from another mum with a child with ATRT and I'm shattered. I don't know how she gets up in the morning and I often wonder that about myself. Our children are fighting a dreadful disease and we can only be a spectator. We can't change it for them, stop it, or make it even better. We can only love them and be there for them in anyway possible and that just doesn't feel at all like its enough.

Why, can't I stop it, change it, make it better? What I wouldn't do, to do that. I feel so damn helpless, all I can do is wait, hope and wish with all my heart this monster does not come back in Jayden. It's such a torturous way to live. Every day, knowing it could be growing, returning. I watch every detail in him, every movement, the way he looks, if he holds his head, if his speech sounds off, panicked at the slightest change.

It saddens me what our lives have become. A clock ticking, hoping no dreadful alarm goes off.
We are away on holiday and I should be enjoying this time as much as possible but no matter how far we travel we cannot run from our lives as we know them to be. I had hoped that with some distance from the hospital and home we could forget for a while what has happened. But thats not how it works. I could never forget and neither Danny, not even for a second.

I've tried though, believe me. I've tried and continue to keep trying to enjoy and be the normal mum in the normal family that we use to know. Its hard though For we are not the family we use to be, far from it. So now my struggle is to live this new normal life, how I do that sometimes, is difficult.

A simple thing like a venture out as a family to the shops or yesterday to a local tourist attraction I now find difficult. I find it difficult when strangers talk to me and Jaydens with me. What I find difficult is I know what he's been through, and I know what he's fighting and his unknown future. They don't. They chat to me about the weather and all things not important (not to me anyway) and I have this urge to want to pick him up and put him on top of my shoulders so everyone can see him and yell at the top of my voice:' THIS IS MY SON JAYDEN AND HES FIGHTING A RARE AND AGGRESSIVE BRAIN TUMOR AND HE'S AMAZING!". I don't.

Yesterday however I found myself blurting out his condition to anyone and everyone who spoke to me. I Somehow managed to turn any conversation I was having into the topic of Jayden. I'm sure that's not what these people especially wanted to hear but I couldn't help myself. Just because he looks fine doesn't mean he's ok and I wanted people to know that. I wanted people to know that he has suffered and it's crap. If they had given me the opportunity I would have told them every detail but they weren't anywhere near as interested as I wanted them to be, in fact some made it quite obvious they wanted to exit the conversation.

I so desperately want to be a normal person enjoying a normal outing with my family but there's nothing normal about it anymore, not the normal I use to know anyway. Its so hard for me to get on with life as if nothing has happened and just go back to how it was. I know thats not whats expected but yesterday when we were out it was the first time we were all together amongst people with Jayden minus all tubes and now with a little hair and I just felt like I needed to tell people not all is what it seems. I wanted people to know and that in some way it may touch them. That they would look at their lives and realize how damn lucky they are and to spare a thought for children like Jayden, who aren't so lucky. I'm not sure I achieved any of that but I needed to say it. For Jayden.

I know in my heart and mind he's my hero, he's my whole families hero. I know that we will together have that bond and knowledge of our strengths and our little super hero Jayden will always be our hero. What we have been through is so significant in our lives and always will be and as we continue to travel this road of uncertainty i just only hope in some small way he can be significant in others. That by telling these people in the shops and writing in this blog that we can somehow be understood by others as the new family that we have become and that his story will have touched lives in some small way.

I know I'm rambling now but it's really hard not too. I will never forget every second of everyday from the first moment a tumor was found in the back of Jaydens head and although it is not there now our lives will always be held by a thin thread with the knowledge that it may return. It's hard. I want to change it, but i cant.

Today and everyday I hold him like its my last, cuddle him for a long as possible, watch his face light up with smiles and soak up every second of them. Laugh with him and cherish those moments, cry with him and comfort him like a mother knows how. Every second of everyday I have with him I want locked away in my memory forever. I don't know when he may be taken from me and I have to live with that. But away from this blog I make sure every second I do have with him, is a second worth living.


Wednesday, 21 November 2012

I'm not sure where to begin with this entry. My first thoughts is of how quickly I can be reminded of how devastating Jayden's cancer is when a beautiful lady I know who also has a son with ATRT was told her sons tumour has returned. The words I dread hearing but know very well it's a very big possibility we will hear them too one day. I know deep down that this nightmare is not over and that it will continue, And it scares me beyond words.

I'm watching my beautiful boy sleeping right now and i cant believe to this day what he has been through already at two years of age. how cruel this is. He never did anything wrong, neither did any other child like him. I don't understand why this happens and I truly never will.
My heart goes out to this beautiful family whom are about to travel the shocking road to treatment again and I'm suddenly petrified of the future.
I'm so scared of what's around the corner it makes me feel ill. I thought I was feeling strong earlier when I was holding him in my arms just after I found out the news and thought to myself how much I just have to focus on today and be grateful he is in my arms right now. But now it's later in the night and I just want to cry. I can't not be scared for the future. I don't want to go there. I can't bare the thought of it and to this day I don't know how we did it the first time round. When I think about it it horrifies me, gives me nightmares at night and I'd hate to think what it does to Jayden's dreams.
I can't even imagine what this beautiful woman is thinking right now because i don't want to go there in my head, its painful and its really, really scary. but I do know I wish I could change it for her. No one deserves to travel this road, no one.

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Tuesday, 20 November 2012

Comfort zone


Jayden keeps asking to go home and I can't help but wonder that he's not having as good a time away as I would have hoped. I think maybe when he's taken out of his comfort zone he begins to get nervous aBout what might happen next and if that is the case, who could really blame him. He's definitely his happiest when he is at home with his toys in his bed (well, our bed). Spending so much time in hospitals, it's no doubt he is happier at home.

Hes also been complaining about a pain in his neck where his Broviac had been inserted which I'm a little concerned about but Danny thinks its probably just scar tissue. It's not swelling or anything like that but something I think I should ask about when we see Nick next.
He vomited again this morning and we had no vomit bags on hand so the kitchen saucepan had to do. It would probably seem somewhat 'off' to an outsider how little concern we now have over vomits. Not the doing it, I hate that, I hate watching my poor little man go through that. But the mess of it I don't even give a second thought. It never makes me nauseous, I hardly notice the smell and I have absolutely no issue what's so ever with cleaning it up and neither does Danny. None of these things though did I want to get 'use' to in my life or begin to think as normal it all sux. We never want. To see Jayden vomit, ever. I hate it. Yesterday he didn't and it just completely changes the start to the day but today he did and it just makes me feel a little flat. Not only is it a reminder of how sick he is and of his tumour but its also a concern because no one knows why exactly he does it?

He's been super clingy to me lately and won't let dad do anything? And I mean anything. He wouldn't even let him open the door for him when he got it stuck or make him a glass of milk, nothing. I honestly think he's feeling a little vulnerable because he's not in his comfort zone. Shame really as out of everyone I really wanted him to feel happy too but I guess you can't get into the mind of a two year old and ask where they want to go? Although I'm pretty sure he would have said 'home'. Or 'aoifes'- our beautiful neighbour. But we can't holiday there.

We leave tomorrow where we are staying at the moment which is at a place called Preston Beach. Really, really quiet place on the coast with one shop that doubles as a bottle shop and deli/cafe. Lots of kangaroos which the kids loved to see and a couple of blue tongue lizards. Tomorrow we are heading further south which we are all looking forward to as well.

Kids are now sleeping after getting way too much sun and hopefully they will sleep in tomorrow- although very unlikely.

Jayden is laying next to me and looking like an angel. I just love him so very much. He's such a beautiful little man with a fabulous personality and full of spirit. God how I wish he would be in the 10%. I will always, always wish for that.
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Monday, 19 November 2012

Swimming

Jayden went for his first swim yesterday since before this whole nightmare began. It was one of the best days we have had by far. Danny and I couldn't wipe the smiles off our faces watching him so happy splashing about in the pool. It was such a nice feeling to have some normality back in our lives. I can't believe how much I have missed him having that freedom to swim. For so long he had to watch the other kids enjoying a swim and now he can too. Truly, truly magic. No words are strong enough to describe how brilliant that was to witness.

We have been lucky enough to get away for a whole week but with some apprehension as we know the first sign of anything
That's not 'right' with Jayden is a quick drive back to the hospitAl. It would be more comforting and relaxing to not be worried aBout that but I don't think there will ever really be a time where I'm not worried about Jayden.
For now however it is just so nice to see him and the other kids so happy and enjoying being somewhere other than home without any Hospital visits or procedures and all of us together.

They are currently playing in the lounge at the place we are staying, building cubby houses with the sofas cushions. How creative kids become without their usual toys is amazing. They are just so happy together and it's these moments that I love more than anything in my life. Id like to be able to bottle these moments up forever and take them out again whenever I feel low because they truly lift my spirits.
I feel like crying now. Every time I think about how precious these times are and how one day they may be gone forever just makes my heart ache. Once upon a time I could watch them and think about them growing into beautiful adults and now I grasp every second I have of all three together and wish and hope with every ounce of my being that I get another second and another..
its tough not to go to that place in my head, I try hard not too but with every beautiful moment I have with my children a sadness lingers in the back of my mind.
My precious little man, the very knowledge that he has an aggressive cancer that could come back at anytime and these moments gone forever is truly hard to fathom and gut-wrenchingly sad to think of. Our lives now evolve around each MRI results. I'm able to breath some sigh of relief that we have been blessed with more time, and I can only hope we get so much more.
So as I sit here watching my beautiful kids laughing and smiling, I'm wishing this moment could last a lifetime.

Sunday, 18 November 2012

Missed party

I'm laying in our bed next to my beautiful little man and next to him is my husband snoring as loud as anyone could possibly snore. Honestly, I'm sure the ground shakes somewhat with every breath he takes.

Jayden's had a good day. He vomited like always first thing immediately after his cup of very weak tea, but not again for the rest of the day. There are so many types of vomits a person can do and we are familiar with all of Jayden's now. Yesterday's was a projectile one in which there was no chance we were going to catch that, but it was quick and over in a second. Today's was expected and we caught it but it went on and on for a while. It's awful to watch him going through it because we all know its an uncomfortable and extremely unpleasant thing to do. But theres nothing anyone can do about it.
its hard to be in this world of 'not able to fix' when it comes to your child's health. hard to even imagine. His cancer, they have no known 'cure', his vomiting they have never been able to stop for any length of time and now the brain damage they are not absolutely sure that the steroids will 'fix it' but rather will use them to try and 'treat it'. I'm confused.
I'm also tired right now and somewhat a little irritable. Sometimes im so cranky about this whole journey and other days I'm just sad. Today I'm tired, cranky, sad and a little fed up. I think I just get so damn frustrated that I can't change this situation or fix it. That my family and I have to live it everyday and I can't change that. I'm mum, and I should be able to make it better but I can't. I still find it difficult to come to terms with that but then this whole situation is difficult to come to terms with.

We had a party we were invited to go to last night and danny and I didn't go. Normally we would of and especially being it was our neighbour whom We know very well. But we both knew we weren't up for general chit chat amongst strangers. Neither of us are in that headspace and I'm not sure when that will come, if ever. I tried to explain to them earlier in the day as to why we wouldn't be there but I felt no matter how I worded it they just couldn't understand. They nodded politely and said 'no worries' but I knew they had no idea how we really felt. Danny went over today though with the boys and had a drink with them and some lunch which was far more doable as it was just the people he knew well.

We stayed at home the night of the party with the kids and heard music playing and people laughing. But as I snuggled up to my kids reading them books I knew there was no place I'd rather be. No party, no celebration. Everyday I have my three kids with me IS a celebration, nothing is better than that and I'm so grateful for everyone of those days.

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Friday, 16 November 2012

Hair

It's Saturday morning and my scrumptious little man had me up at 5 am again. But how I love these early mornings now.
Sadly, He vomited after his milk again this morning but then had his cup of tea and breakfast that he managed to keep down. We then headed over to the park still in our pjs for a play. Not Likely to run into anybody at that time of the morning and what a beautiful time of the morning it is. Every time I come over to this park I think about how grateful I am he is there with me. Before jayden was diagnosed we use to take the kids there everyday and jayden would love it. I remember like it was yesterday the first time I took the kids there without him because he was in hospital and how gut-wrenchingly sad that time was. Now I walk over there with him and I'm just so very grateful he is with me, holding my hand and chatting away.
I noticed today his hair is growing back. He has a millimeter or two of hair all over his scalp now, but you have to look closely to see it because it's so fair. Very exciting. I can't wait to see it get longer and then him look like a normal little boy again.

Dr nick had rang me yesterday to say that both Dr Goldman and Dr Chang had reviewed the MRI pictures and agreed its not necrosis but gliosis demyelination. It was also agreed that Jayden be given a course of steroids should his symptoms worsen. I'm now watching him like a hawk for any changes at all in his behavior. In some ways I just wish they would start them now because then I would at least feel like something was getting done about the damage. It's difficult to just 'wait and see'. But Nick wants us to wait a week and when he gets back from his trip to Brisbane he will start Jayden on steroids should his symptoms not go away by themselves.
His symptoms meaning his vomiting And his uneasiness on his feet. Of course if they worsen before then we have to have Him seen by a doctor and the steroids started.

So I'm watching almost every little thing he does and hoping nothing changes. He's definitely not as happy to walk all the time as he was before and often asks me to pick him up. His walking has never improved from when he first started to walk again back in June. He still walks like he's just learnt, wobbles and if he turns suddenly will fall over. It's frustrating to watch as I would love to see him walk well but Nick said he may always have trouble with that. He's still vomiting and Nick believes that could be one of the symptoms of his damage which he hopes will cease with time.

Its a few hours later and danny and i are driving around trying to get jayden to sleep as he's very tired and there is no way he will go to sleep in his bed. However we have decided we need to get a plan together to sort that out with summer coming up.

My sister Linda is down for the weekend and she called in this morning to see us. Fabulous to see her with her positive and bouncy personality. the kids love her, how could you not? Jayden particular loves her and is always talking to her on his pretend phone when she's not here- very cute. so he was over the moon to see her and spent the whole time that she was here siting on her lap. So happy for him that he has Aunties that love him so much.

It's a hot day and too hot to be sitting in the car but hopefully by this time next week we will have his sleeping sorted. Hard to get him in a routine when it's been so out of whack for so long but we know we have to try.




Thursday, 15 November 2012

Report is in

Waiting is just not my thing. Although I'm not sure it's anybody's. Especially waiting on results about my sons MRI. I've been told the report is getting done now so only a matter of time but that time seems to be taking forever. The amount of different scenarios running through my head and the very need to be doing 'some thing, anything is huge. I want to know if he does In Fact have radiation necrosis and what we can do about it and when. But instead I have to sit here wondering and waiting, or should I say worrying and stressing. All the while I know the weekend is ahead of us and if we don't get onto it before then, then there will be two more days I have to wait.
Nightmare.
Nick rang and told us they had another guy look at the pictures whom apparently is a specialist in that area and he said he could not see radiation necrosis however he could see damage to the cells in the cerebellum and pods areas of the brain. This damage would have been caused by either the chemotherapy, Radiation or both. They don't know which specifically. What they call that is gliosis demyelination. It's still yuck and can develop into necrosis but as yet it isn't. Nick is concerned however that it wasn't there 5 weeks ago but is now. He's booked him in for another scan in 8 weeks and expects he will see more damage by then. In the meantime he has sent all the info off to Dr Chang and Dr Goldman to see what they think and their advice on how to treat. I'm hoping they have some idea of what to do next.
For us it means watching Jayden for any changes in behaviour or balance etc and other neurological symptoms. He said it could also be what's causing his vomiting.
It's all still crap but not as bad as it could be, yet and hopefully won't get to that.
I'm laying next to my little man right now and he's sound asleep. Luke is snoring to my left, danny to my right and Jayden squeezed in the middle.
He's had a good day, been very happy and not at all bothered by the last couple of days. He vomited this morning, like always but not since. Would love to see him get a good break from that.
I'm going to sleep now and try to stop stressing, mission impossible....



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Wednesday, 14 November 2012

Radiation necrosis is what he has not radiation neurosis.


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MRI

Back at PMH in radiology waiting room waiting for Jayden to be called for his MRI. Fasting sux for a two year old and we have to wait another two hours in a waiting room that doesn't stock toys. Fortunately we have done this enough to know that and stocked up on entertainment in the back of the pram. However he still asks to go home or to go to the car. I wish. I think everyone in this waiting room wishes they were in the comfort of their own home and not stuck in here waiting. Would be so nice.
But we are not.
All things considered hes amazing. He's hungry but playing. Doesn't want to be here but makes the most of it anyway and still manages to smile.

He's now in getting scanned. It was a really tough couple of hours especially after some idiot sat in the waiting room drinking a chocolate milk and eating! Loads of signs everywhere to say not to because the waiting room is FULL of fasting kids. Honestly it made me so cross i wanted to scream. So of course once Jayden saw that he went bananas for something to drink and eat. It was awful and was really difficult to distract him for the next two hours. We had to take him into another room to calm him down and even that didn't last long.
Its these moments that really test you when you are already living your life walking a very thin tightrope of sanity. One slight hiccup and off you go into the depths of crazy land and you just want to scream or cry very loudly. It's so hard for me now to cope with stressful situations without wanting to curl up in a ball and cry about how damn unfair this is. But I don't. I managed to keep my cool with the nurse who told us it would be another half an hour while my son screamed in my arms. I cried, but I kept my cool. I so wanted to yell at her but I knew it wasn't her fault but sometimes you just wish you could blame someone, anyone for this shit situation. I didn't. I sat in the MRI waiting room and just cried instead. Being back in this hospital for any reason stirs emotions in me that I spend all day and night keeping at bay, I hate it.
Soon after the anaesthetist came to speak with us about how she would put him asleep as he no longer has the convenient Broviac. She told us if she couldn't find a vein they would use the gas mask which frightens him terribly. They didn't find a vein, he had the mask and it was awful, he was very scared. Fortunately it was quick even though it felt like it took forever.

Now we are waiting in the friendship room for someone to tell us he's ok, it all went well and he's now in recovery.
More waiting. I now wish I never complained about sitting in a doctors surgery to get a prescription because I wish that's what I was doing now and not waiting to find out if my sons deadly brain tumour has grown back or not. Oh for that life.
What I wouldn't give to be whinging about that!

There's other parents sitting in here and I wonder what they are thinking. No doubt something along the same lines.

A volunteer just came and got us and we are now sitting in the waiting room of radiology. One step at a time. We now have to wait till he wakes before we can see him. Crazy really? Why can't I sit by his side and be the first face he sees when he wakes? I'm sure there's a good explanation medical wise but as his mum no explanation is good enough to keep me from him. However that's the way it is. I'm just glad it's over and we are one step closer to going home..

He's with me, it's a few hours later and we are home.
We spoke to Nick just before we left and apparently Jayden has something known as radiation neurosis. There is areas around the part of his brain that was radiated that show damAge. This wasn't there five weeks ago. He's pretty sure it's not tumour but the full report needs to be seen tomorrow and he wants another expert to look at it. He's also sending the pictures to Dr Chang in chicago and ask him what he thinks as he personally has not seen a lot of it here.
What does this all mean? Well essentially as I understand it, its cells damaged from the radiation that could potentially get worse and cAn show up after 6 months after the radiation.
What Nick has told us is we have to watch him closely in the coming days and weeks and if he shows any signs of neurological problems we get him seen immediately and treated.
You just can't get through all this unscathed. You put a small body through the ringer and something's gotta give.
This nightmare truly never ends.
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Tuesday, 13 November 2012

More vomiting

I'm sitting in PMH waiting room in ward 3b. Danny and I have an appointment with the councillor today. I have the overwhelming feeling of sadness every time I come here but today more than ever.
Jayden vomited more than once this morning. I had thought as long as he just did it the once everyday, then maybe that's not so bad and could have some simple explanation. but as soon as it were to increase I knew I would panic. He vomited the first time as expected this morning then half an hour later and then almost did a third not long after that. I emailed nick immediately and asked if we could have a scan. He's organised one for tomorrow. An MRI in the afternoon.

So today when I'm sitting In the waiting room of Ward 3B I'm desperately trying to hold back the tears. The memories of our time here and now the possibility of it returning is truly too much to bare. A beautiful woman comes up and politely introduces herself and tells me she follows Jayden's page and adds that she is there for me. I ask her her name and thank her. What a wonderful, kind woman who know doubt has her own difficult journey shes travelling. When she walks away I start to cry.
I'm so very sad. I thought I had been doing pretty well these last couple of days but evidently I hadn't for as soon as we entered the councillors office I fell to pieces and stayed that way for most of the hour. I found myself not being able to talk without crying and was overwhelmed by all the emotion inside of me.
I'm truly terrified of what's around the corner and even though I know it's no way to live its almost impossible most days not to be. Especially today.
Cancer has taken so much away from us and I often have no energy to fight it by pretending everything's ok when it's not.
So when i spend a few days just coping its only a matter Of time before it all comes crashing down and given the events of today it's no real surprise it did today at that time.
We left the session exhausted and keen to return home to Jayden. His nanna looked after him while we were out and he had fallen asleep on the floor just before we arrived home. He just looked so beautiful with his little pillow and sound asleep on our lounge room floor with Sesame Street playing in the background. Watching him made me want to start crying again. I just love this little man so much and I don't want to lose him. The thought of that is so overwhelmingly gut wrenching its truly unbearable.

Nanna left soon after and Danny and i talked about the day. soon after that i picked Luke and Layla up from school. I don't even want to go there right now with that experience today. It just wasn't the best day for me to do pick up, enough said.

We also had family photos done this afternoon that I had completely forgotten I had organised. Fortunately they were taken at home so we didn't have to go anywhere. We all smiled for them and looked happy but inside i think each of us understands to some degree the significance of them. It was hard, but they are so important especially to me. No matter what happens this is my family, the five of us. It will always be five no matter what and I want pictures of that. Happy ones, beautiful ones. All of us together. Memories that will hang on my walls forever. I so hope we get to update them every year for years to come.

I'm now laying next to my little man and my eyes hurt and I'm tired. I've cried enough tears today to sink a battleship and I think my eyes are now keen to shut. That's what I'm going to do and hope that sleep comes quickly.

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Monday, 12 November 2012

Vomiting

Jayden's still vomiting in the morning and its just become the norm now. We just wait with a bucket after he's had a milk and out it comes. This morning I was near the sink with him in my arms and that became the target. Far better than the couch or floor or down his pjs. He's in good spirits and as yet not vomited any other time of the day or night. I have no idea why, neither do the doctors but we are all hoping its NOT tumour related. But no body knows for sure. I'm trying not to worry about is as that serves no purpose at all however, very difficult not too.

He's not due another MRI till after Xmas and in some ways I feel like I should ask for one before. I just don't know. Do I really want to know or would I rather just hope and pray its not? I just want to enjoy this time so much and wish I didn't have to worry about it, not ever. However I am thinking if this keeps going we need to get one so We can all at least breath for a little while.

It has been so nice having him without a Broviac and we are all starting to feel like a little normality is back in our lives. I know it's not ever going to be the same no matter how hard I wish it were but I have to be happy for what we have right now. all five of us under one roof, no tubes or lines, and that is a hell of a lot better than it was.

I'm laying next to him now and he's sound asleep, he's had a big day with no daytime nap. He fell asleep easily because he was so exhausted.
He hasn't had much to eat today and we have been having troubles getting him to eat anything other than yogurt or milk, it seems to be his staple diet. He eats the odd banana and capsicum but other than that its just dairy, and egg. Which is worrying to us when we keep reading that the two worst things for cancer are dairy products and sugar? We keep pursuing other options but he's pretty determined to get his yogurt and milk and I for one have become a super pansy parent to him now and he's completely and utterly spoiled in every way. How can I not spoil him. i just want to wrap him up and cuddle him all day and it's impossible not to want him to always be happy. Of course we do draw the line on treats and junk food but yogurt? Difficult.

Jayden and I visited a wonderful friend this morning for a cuppa Which was really nice. Getting out again has been something I've needed to do. She helped me to understand some of the troubles I'm having with luke and shes just an amazing support. I love this woman.
often my husband just isn't the one i can talk to, and although thats sad sometimes its just men and women i think.
Jayden played beautifully with all the toys she had there while we chatted. He really is a wonderful kid, always has been. Easy baby, well compared to my other two anyway. Always easy going and never got really upset. He was always easily amused and just so laid back. Very social. Watching him then after all he's been through never ceases to amaze me. He took it all and just kept going and now he's sitting happily playing with toys. It's so hard to accept that one day I will not have the pleasure of watching him grow and achieve. His big brown eyes on the face of a man I will never see. He would make such a handsome man too, I just know it. Would have loads of girlfriends, a real ladies man.
What I wouldn't give to have him beat those crappy odds. 10%? What is that anyway? Its just crap, that's what it is.

I try not to think about it, but its there. When I wake at night, its there. It stops me from sleeping and it just doesn't go away.
I'm tired now but I know sleep doesn't come as easily as i would like it to. But I always look forward to snuggling up to my little man.


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Saturday, 10 November 2012

Day one without the Broviac

It's been so nice not having Jayden's Broviac in anymore. He was able to have a bath with his brother last night for the first time since before this whole nightmare began. It made my heart melt to see them together again in the bath but an overwhelming feeling of sadness came over me when I thought about why it was they hadn't bathed for so long together. A special moment is often ruined now by the thought of why it is that that moment is so special. What I use to take for granted is gold to me now and I will never forget why that is so.

Luke and Jayden had such a lovely time in the bath like too old friends catching up again after a long spell apart. Silly really as obviously they see each other all the time but it was really exciting for them to be in the bath together again, and to not have to worry about lines getting splashed. brilliant to see. i love my kids and watching them happy together is truly the best thing ever.

We decided today we would go away for the night, nothing fancy. We just wanted to be with the kids and not do anything else or have any other distractions. It's been really nice and the freedom that comes without that Broviac is wonderful.

I still find myself being careful when I go to pick him up, take on and off his shirts, and put him in the car seat and having to remind myself it's not there anymore. He doesn't seem to care either way but its great not to have to worry so much. especially when he and luke are playing. i no longer have to panic if they climb the couch or bed in fear that Jayden's lines might get caught or when they wrestle. they now have the freedom to be normal brothers again which is so good for them.

I'm so happy to see his little body again. His precious little two year old body, free from anything hanging from it. Looking as it should be, and all I want to do is hold him, cuddle him and give him big kisses. I'm just so very happy to have him all back the way he once was. I know it's not exactly the same and the fear of his cancer returning is often overwhelming but I'm trying to be happy for today and what we have right now.
And what I have is a beautiful little man that has fought his little heart out to get this far and I just can't stop cuddling him. I never want to stop doing that. I never want that pure joy taken away and I'm truly petrified of that. I watch him now laying asleep next to me and I know I couldn't possibly love anything or anyone more than I love him and his brother and sister. I hope with all my heart that with each breath he takes he gets stronger and keeps fighting within his small body to stop this revolting cancer coming back. I am so very frightened for him and I try so very hard not to think about it but I'm scared. Really scared.

He's just a magic little man. He's been so happy while we've been away staying somewhere different. As long as he's with us he doesn't care where he is and neither do we. All that matters is we are together, he gets that and I'm so very grateful we are.



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Thursday, 8 November 2012

Broviac out!

Im Sitting in the friendship room (parents waiting room for surgery) at PMH, for the volunteers to call our name to let us know we can see Jayden.

I'm so tired as late night and early start but more than that I'm exhausted from this journey. No more than Jayden however. When we woke him this morning to go he wasn't happy. When we arrived he was quiet and compliant but by the time we had seen the anaesthetist and he got the general gist of what was going on, he lost it. Screaming 'I want to go home', 'car mommy'. This went on right up to when we took him into theatre. He was so very scared it was awful. I'm so glad this is not the beginning but the end as none of us are up for this anymore. It's truly exhausting emotionally, crushing to see your child so upset and not being able to stop it.

The surgeon just came out to see us and told us everything went fine and we can see him soon. We still can't have a deep bath or swim for a week, bummer. But a big cuddle without worrying about a line is certainly the first thing I'm going to do when I see him.

My scrumptious little man has been through so much and I'm so glad he will be at home without anything hanging out of him for the first time since before March this year. Yah for that!


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Fire brigade

Jayden woke really early this morning from what i think was another nightmare (at least i hope so) and it wasn't looking like i was going to easily settle him. i was worried he would wake Luke up so I picked him up and we jumped into the spare bed. it didn't take long till he drifted off again whilst snuggled right into me. i knew i wouldn't go back to sleep but i laid there holding him, listening to him sleep and it had to be one of the best sounds. Just knowing he's alive and well and in my arms is the nicest place to be for me.

i love those moments so much where i get the longest cuddles and just being so close to him knowing he is with me, peaceful and happy. He woke up about an hour or so later to the sound of danny and the kids in the kitchen, it was a great start to the morning as he was well rested and happy although I have to say he is almost always happy in the morning and I do believe its cause he's home, where he should be. He didn't vomit this morning and I'd like to be excited about that but I know it means nothing yet.

The Kids headed off to school after breakie and danny off to a work thingy leaving Jayden and i to hang together. It was so nice to have him to myself and not plan to do anything else which is pretty much how we decided to spend the morning. We visited our favourite neighbour and beautiful dear friend who I love so much and Jayden absolutely adores. I met her not long after Jayden was born and she and her wonderful family have become so very special to us. sometimes people walk into our lives and its as if they were meant to be there all along. But That somehow they were sent to you when you needed them the most. I love this lady, she truly is a gift. A genuine, beautiful, kind, caring, loving and just amazingly gorgeous person.
I never feel like I'm burdening her with my extremely difficult situation and she is always available to cry to or with. There's no doubt in this journey you need that and I have been blessed to have people like her now in my life.

I am having a better day today and managing to get through it without falling apart, it's still incredibly hard but I'm starting to realise that maybe this is as good as it gets. My neighbour said that the other day to me and I think she's right. Life is never going to be as it were. This is always going to be painful, that somedays are going to be worse than others. That maybe that's just it- as good as it gets.

Today Jayden was visited by the fire brigade that was organised by another lovely lady whom I have never met in person but has helped our family out a lot through this journey. Her friends husband was the fireman that came to visit Jayden with his crew. They were so wonderful to Jayden and you couldn't wipe the smile of his or my face. To see him so happy holding the hose while water squirted out and sitting in the drivers seat of the big fire truck, it was magic.

It really made our day. We picked Luke up early from school to see it too and he also had a ride in the truck and even got a second go with Danny. It was truly wonderful and I'm so very grateful to the beautiful people who made that possible.

He's asleep now, everyone is except me of course. It's an early start tomorrow as Jayden is getting his Broviac out and we have to be there by 6:30am. He's first on the list. Not looking forward to him not being able to eat but by this time tomorrow ill be snuggling up to him without a Broviac hanging from his chest. I'm so looking forward to that.

I'm going to try to sleep now, snuggle into my beautiful little man and enjoy the sound of him sleeping.

Wednesday, 7 November 2012

A date for Broviac

Its 2am in the morning and i cant sleep, again. Jayden woke me an hour ago and I haven't been able to get back to sleep. He had a nightmare, well at least I hope that's what is was although I'm laying awake worrying he's uncomfortable as a result of something not good.
We had an appointment with Nick today at 9:45am, not sure why we bothered to hurry to get there on time as we never actually saw him till after 12." PMH time" according to one of the other mothers who was also waiting.
He examined Jayden and couldn't explain his vomiting but didn't believe anything would have grown back so quickly so wasn't too worried. Danny was happy with that but it was no reassurance to me what's so ever. The amount of times I have sat in a doctors office and they have told me there is nothing wrong with my son is Phenomenal. So it's difficult for me to take anything that comes out of a doctors mouth now as complete gospel. I will always have doubts.
So i left his office feeling no better than when i went it. We do have some good news though and that is We found out today Jayden's Broviac will be removed on Friday! Yah! Very happy about that. Can't believe I will no longer see that dreadful thing hanging out from his chest and I can only pray and hope I will never see it again.
I had mixed emotions being back at PMH today. I will always have doubts about our decision to pull out early but also being in there was truly confronting. I still can't believe we did what we did, day in day out. I watched the parents in there today and it was truly crushing. A lot of new kids I hadn't seem before or maybe never noticed but its just tragic. No one should have to walk through those doors with their child. It's insane that they have to.
I'm getting tired, thankfully. I'm going to stop writing and hope for sleep.


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Tuesday, 6 November 2012

I saw a lady bug land on jaydens shoulder today and watched, thinking how much I hope it does, in fact mean good luck. I never thought much about things like that before but now I cling to them for some hope. If there is a god, miracles, good luck, whatever, then I hope they are real and keep my son, all my kids, healthy and well.

I'm a little stumped for words again today because I feel like my head is a jumble of emotions , no one thought is sticking and I switch from one thought to the other but all clouded with anxiety.

I'm sitting in my car again while my son sleeps and I'm watching parents pull up in their cars to pick their kids up from school. One walks quickly to catch up to another mum and begin idle chatter, laugh, smile. It's truly gut wrenching to know everyone's lives just move along while your own is so changed. I feel like that time has gone for me forever and I know i am no longer the person I once was.

Watching mums pick up their healthy kids and having absolutely no idea of the life I'm living is awful, sad and lonely. I so yearn for their lives. I wish that could be me again and more than anything I wish that could be jayden -healthy, well. I wish I could have that skip in my step and catch up to a mum for a chat about stuff and things like whats for dinner and whether i paid the swimming lesson money yet.
I wish that was all i had to worry about, simple stuff.

I still have those things to think about but they are the concerns I like as they give me a small sense of normalcy. When i have to organize dinner, i enjoy it. If its overcooked, i don't care, because I'm doing it. When I wash my kids clothes and put them away I like it. I'm so glad To be doing it again as I know not long ago I couldn't as I wasn't here. Instead I was living in a hospital room with my son. That was no doubt the saddest point in all our lives so now when I peg the clothes on the line I'm so relieved I'm the one who's doing it and not someone else who had to fill in to help.

We finally let go of Jaydens cot this weekend. A member of a church took it to give to a couple that had nothing. We gave them all his baby clothes and baby toys as well and were glad to know it went to someone who needed them. It was sad to pack them up as it is for any mum but especially when they are a reminder of a time my son was well, before this nightmare. Each outfit reminded me of a moment, a smile, a milestone. Each toy the same. All of it filled with memories of a time when things were easy even though back then I had no idea how it was. There's no doubt I made it hard for myself back then and no doubt I thought I had big things to worry about but now I know I didn't. life was great then, truly brilliant. I know that because I have something very real to compare it to now.

I'm still watching the mums.
I wish I could feel in my heart the easiness they feel, the ability to breath without pain, have some sense of peace.
My life now is so very different from before and so incredibly hard I truly battle with how to live it well. I want to be able to take a breath so big it sucks in all the pain then blow it out so hard so it goes away forever. But with each breath out the pain is sucked back in.

I picked up my son today from school. A very hard thing to do. In the thick of all the mums I envy. Longing for The life I once had. He was so happy to see me and I him. It's when I'm with my kids I'm reminded there is a beautiful life I do have, with them, that somehow I have to find a way within me to truly have peace and enjoy it. I haven't found it yet, but I long to.


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Location:Wishing for the past

Sunday, 4 November 2012

Sometimes I just don't have the words to write in this blog and other times it flows like a waterfall. Today is a day I'm a little lost. But I will start by giving an update on Jayden. He is still vomiting in the mornings and I received an email from Nick to tell us to bring him in on Wednesday to get him checked out, finally. I wish there was a simple reason for his vomiting only in the morning but it's giving me a sick feeling in my stomach.
I hope when he sees him on Wednesday there will indeed be some simple explanation.

We have been indoors all day due to the weather and it tends to send us all a little stir crazy. Noone more so than my middle child Luke. Danny and I are truly struggling with him at the moment and don't know what to do next. He's a beautiful caring child and wonderful with his brother and sister, but he is also highly emotional and gets very upset very easily. We are battling with him because he flies off the handle at the drop of a hat and we are usually left dumb founded as to what started it and why on earth he is so upset about it. Again I think this is a case of the real reason behind his emotions has very little to do with the actual thing he is getting upset about, whatever that may be and more about this whole situation.

I really feel for my other kids and particularly Luke. He is only six and wasn't ready to be torn away from me in the beginning of this year nor ready to have to grow up so fast. So much was expected of him so suddenly and I truly think this is still the ripple effect from all of that. He often feels attacked by everyone, even though that is not what is happening and has a 'everyone is picking on me' feeling all the time. He has said on occasion that no one loves him and they only care about jayden and that's usually in the context of me specifically.

He asked me one night why he no longer sleeps in my bed as jayden does now and he sleeps In a bed next to us. I told him he use to but no longer wanted to. Sadly that was my recollection but he reminded me I was wrong, he said "mum I still want cuddles, I never stopped wanting to sleep in your bed". I suddenly realized he was right and that's not how it happened at all. In fact before jayden was diagnosed Luke use to sleep in our bed almost every night. Then all of a sudden jayden and I were in hospital and Luke was left to sleep in his own room, often woke up crying because I wasn't there and then when I finally returned home jayden is now in our bed and he isn't. There was never a time where he got to say 'I'm old enough not to now thanks mum' like Layla, she just eventually grew out of it and slept In Her own room in her own bed.

He woke up last night from a terrible nightmare and asked to jump into bed with us but when he looked at jayden sleeping diagonal on the bed and taking what room was left up he said no. I tried to convince him we could make room but he got into his bed and I felt like crying. My poor little man, my whole family. Everyone has been effected by this and it's so hard for each and every one of us.
No one can truly begin to imagine the effect and tole cancer takes on an entire family. you wouldn't want to.


It's the next day now and jayden is sitting on my lap eating pancakes. He didn't vomit today but did yesterday. I don't know what it all means and I hope some answers become available on Wednesday but I suspect without a scan they won't know anymore than us.

Today is Another day to travel and another day to be grateful I have all my three kids with me. I can only hope I get to count a million more.
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Saturday, 3 November 2012

Simmering down

I never wrote in this blog yesterday, I couldn't. I think I get to a point when i become so stressed and upset that i emotionally shut down and just become numb. I have no words then. At least that's how I felt yesterday. I think my mind and body had to just stop and feel nothing for a while to recuperate and be ready for the next onslaught.
Sadly I was so numb yesterday that often throughout the day I didn't notice my kids speaking to me or wanting my attention until they acted up or yelled. I hate it when I become like that. I hate that they have lost their mum in someways and what is left is not the mum they once had. I wish I could be that for them again and believe me I try. But my heart gets in the way and inside I hurt so much.
Danny and I had yet another shocking day yesterday but this morning we were able to talk without anger and put our differences aside. Thankfully we do seem to manage to get there in the end but sometimes like recently I was really worried. I know I can't do this without him and I wouldn't want to, it's hard enough.
I'm now sitting in the car yet again with my beautiful little man sleeping. We are in front of a park that sits near the river. I remember coming here a while back with Jayden when he was well and he was just walking. Layla was with us, just the three of us. I have photos of that day and I look at them now and can't believe how life has changed. I can't believe back then That he had a tumor growing in the back of his head and we are where we are now. When I drive along the Highway towards PMH I remember all the days I did that and how it never felt like it was going to end. It hasn't but the visits for now have and hopefully forever.
There's no real end to the pain of having a child diagnosed with cancer. No end and certainly no happy ending. There maybe some relief for a time but no end. I don't believe so. The diagnosis is devastating, the treatment horrific and the journey to what you hope to be a full recovery is tainted with anxiety and fear of it returning. The enormous pressure of that weight you carry on your shoulders infests your relationships, life and parenting. To recognize it can be difficult sometimes and the tidal wave of emotions that come with it can cloud your better judgement in everything.
I'm struggling, I know I am. I'm scared. I don't really know how anyone couldn't be in this situation. I only know to take little steps everyday, try not to think of what could be as much as that is almost impossible and be happy to have him here with me now.
It's a few hours later and I'm ready for bed. A much better day was had today and obviously helped by the fact that danny and I are back where we should be- a team. The kids are happier, we are happier and everyone benefitted. I had some beautiful moments with jayden and took some fabulous photos of all the kids.
A nice start to the weekend.

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Thursday, 1 November 2012

Difficult times

As if living under a cloud of uncertainty of your child's future is not bad enough but doing it with someone you feel sometimes doesn't get you at all makes it even more difficult. I often wonder what goes through my husbands head sometimes when to me it seems so obvious what needs need to be met. I don't want to spend this blog entry airing our dirty laundry but sometimes i just get so frustrated. And i know deep down inside it truly has nothing to do with him but more about how bloody hard this whole situation is. How fricken painful it is and even when i think I'm managing, inside I'm really crumbling. I feel like I'm crying on the inside and spend my day filling my body with tears and only one little thing in the day needs to go wrong, it can be so simple and I'm a dribbling mess.
So often its my partner who I feel is doing 'it wrong'. I'm sure he's dealing with all this stuff In his own way but I so wish we understood each other better. I wish he knew when I needed him. How important certain things are to me And truly understood why. But we are so different and I've no idea how to work around that sometimes when so much else is going on. Once upon a time i could, we could. But now things are different, harder, painful and just so damn difficult to manage and deal with. I know we will get there, we have to but shit it is no easy task.

Jayden didn't vomit this morning and I've heard nothing from either oncologists. I'm sure nick is probably over run with stuff to do and no doubt jaydens case is no longer a priority and I understand that. It's difficult though as he is a priority to us. He's my first and foremost priority. I don't know exactly what to do next other than wait. Wait and hope.

He's been a little cranky today which no doubt is a little of normal two year old behavior and a lot of being unwell and I'm sure, truly has had enough. I for one am so sick of seeing that broviac out of his chest and wish they could speed it up to remove it. We enquired about it yesterday with hospital in the home when they came to our house to change jaydens dressing. It all seems a lot of unnecessary pain to be had by him and that's frustrating to watch being his mother. Apparently they are so busy at PMH and the earliest he can get it done is in another two weeks? We are gutted as I so want him to be able to have a decent size bath and be able to go swimming with us, now. It also means there's the ever present risk of the line getting an infection and we really don't want that. So the sooner it's out the happier we will be.

It's the afternoon and a few hours later. I've had another disagreement with danny over the same shit. I just can't get him to see how I feel and it's frustrating. I feel beat. Some things are so simple but we make them so hard. During my whole life I've listened to my heart, what it tells me, what I need. I wish that Danny's heart told him the same things, but it doesn't and that's where it gets hard.

I want to end this blog on the lightest possible note I can even though right now that's not how I feel.
But last night we took the kids trick or treating and it truly was the best thing I could have done given the day I had. Jayden was hilarious and had a blast. The kids were all so happy to be out and knocking on people's doors to get treats, it was truly magic and put a big smile on my face. Just to see them happy and smiling, it doesn't get better than that. Thats what gets me up in the morning, and through the day.
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