Thursday, 31 October 2013

I just want to start this entry by saying I don't see my psychologist anymore because the Australian government under the mental health scheme only subsidises 10 visits. I have heard recently That I may be entitled to a few more and have booked myself in to see a doctor to find out. Otherwise if I want to see my psychologist it costs $270.00 for 45 minutes. Ridiculously expensive and I don't know about anybody else but we cannot afford that. The scheme works over the calendar year so come January I can go back.

Since I haven't been seeing her I have been actively pursuing other counsellors/ psychs and as yet not found the help I need but will not be giving up.
I feel the need to explain this because of a comment that was made recently.

when I write In this blog its to let off steam, express my emotions and try to make sense of my life and my feelings as I let those feelings out. I'm always trying to find ways to cope and function as I'm well aware I need to keep myself together for the rest of my family. Fact is though, there's no getting away from my concerns and the space in which my mind now exists. And if I want to have a big cry, and feel like absolute crap then I should and, it's healthy. If I worry about the future and struggle with my life at times as well, well that's just normal in this situation. It can't be fixed, it doesn't go away. I'm sadly behaving "normal " given the situation.

A few weeks back I was fortunate to have a chat with Dr Goldman via Skype. After much discussion about Jayden he said "I'd like to be able to say to you to try not to worry but only a parent who doesn't have a child with cancer would say that". He's been doing this long enough to know that no parent who's travelled this journey will stop worrying about their child's future. It's not possible and only a parent who's travelling it would get that.

When someone tells me to not worry or stress less, or i need to be put right, then they clearly have no idea what it's like to sit in my shoes and it's difficult not to be a little bit pissed. It's difficult not to shout "you just don't bloody get it". More than anything, comments that brush off my concerns like that just make me tired. Tired of wishing people understood. Tired of feeling this way and wishing it was in fact just a case of " just stop worrying". But it's not. If only it were that easy.

Yes my son had a clear scan and anybody who knows anything about brain cancer or childhood cancer or anything to do with cancer in fact, knows a clear scan doesn't mean he's cured. In Jayden's case with the nature of his type of cancer, Nor does it mean everything will be fine next scan, next month, next week, or even tomorrow in fact.

Don't get me wrong, when his scan is clear, I'm ecstatic. But I'm not yelling "yah, back to normality and all is fine forever ". What I'm feeling is a huge sigh of relief because we have been blessed with "more time". How much time we don't know but wait anxiously for the next scan, hoping and praying like crazy that that scan is clear too.

Yes, I try my damnedest to live every moment and cherish every second of everyday and combine that with trying to be normal. But there's nothing normal about this situation.
I no longer wake in the morning thinking about my day ahead. I wake to my little mans sweet face and think how many more wakes will I get to see that face. He woke me this morning particularly early and I was exceptionally tired but I couldn't be annoyed. How could I waste a second with him and be upset. And if I do I beat myself up about it for ages.

I looked at his little face this morning as he sat up in bed smiling at me and thought of my brother. It must have been the way he smiled but I thought of him. Inside I felt like crying. The knowing that there's a huge possibility that Jayden will never reach adulthood like my brother. Then I thought of my mum and her time with my brother and how I wish I could feel the way she would have when he was young.

But I don't. Those thoughts and feelings were taken from me the day Jayden was diagnosed. The hopes and dreams for his future and the future of our family together.....Gone. Replaced by a desperate sense of hope for the future. A desperation that makes me hold him longer than normal in a cuddle, cuddle him all the time, kiss him more, watch him more, with the fear of knowing one day I may not have him with me. When that day is I don't know or if that day will come at all. But I live in that very real uncertainty and nobody knows what that's like unless they are living it.




I spend time thinking about whether I spent enough time with my son today and was it enough quality time. And if not will I regret it later? Did I pay him enough attention? Should I have taken that phonecall to chat to a friend when he wanted me to play trucks? Will I live to regret that. Will I live to regret I got frustrated when he needed something and I was in the middle of doing something? I analyse every moment of everyday and worry about whether or not I made the most of that day with him. And if I feel I didn't, I beat myself up about it in the wee hours of the night.

Another cancer mom I know wrote recently about how she felt 5 years from her sons treatment ended and she still feels like this. It doesn't change with time. You learn to manage as best you can by getting up every morning and going through the motions but inside nothing changes. The thoughts, feelings and emotions are not the same as they were before our sons was diagnosed and they never will be again.

I'm exhausted wishing people could understand that. I'm exhausted feeling like I exist on a completely different planet to others. A world within this world. .
But just as I can't expect people to understand me I wish people didn't expect me to be like them. That just because they think it's ok, I should feel ok. Because it's not ok. None of it is, and it simply never will be. Not the " ok " I want it to be. Instead I have to be grateful for everyday I get, and I am. Every second, every moment and I don't want to miss one.




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Happy Halloween

I took the kids trick or treating tonight and it was fabulous. They loved it, especially Jayden.









Lots of fun.
Jayden really enjoyed being out with all the kids and filling his bag with lollies.
It was tiring for him and he spent most of it in the pram but he enjoyed it thoroughly. I often worry about his lack of energy. He rarely walks very far when we go out anywhere before he wants to be carried or be in his pram, and I watch other kids his age and they are full off beans all the time.
I try not too. But it's hard not too.

He's asleep now. All trick or treated out. I'm so happy he got to enjoy the evening. I can only hope we get so many more halloweens together.



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Tuesday, 29 October 2013

I woke this morning to my two boys excited about discovering where the Elf on The Shelf we received yesterday in the mail was. He moves in the night with his magic powers and when you wake in the morning you have to find where he's moved too. I just love this time off the year.

Luke was up first, shortly followed by Jayden and it was 5:30am. Not my most favourite time in the morning and with little sleep during the night I wasn't feeling my best to get up. Luke however volunteered to make Jayden's breakfast and off they trotted to find the elf and have breaky together. Next thing I knew I could hear little voices in the room whispering quietly, "mum ". I woke to see them grinning from ear to ear and it was 7:00am. I couldn't believe I slept that long. Danny had also been up with them but for much of that time they amused themselves quietly in the lounge room and Luke got Jayden and himself breakfast.

When I walked into the lounge I discovered their huge cubby house that they made together with all the kitchen chairs and all the blankets they could find. Geez that made me smile. What a truly wonderful way to wake up. Love my boys.

Jayden made a new friend today and I am just so pleased for him. A really lovely lady I have been fortunate enough to meet through this journey visited us today with her equally gorgeous little boy. Jayden and her little boy hit it off straight away and played together and along side each other for most of the visit. Just truly a delight to watch. And his mother and I had a wonderful chat over cups of tea. I felt truly blessed to have their company and it really made both Jayden's and my day.




Sadly today another one of Layla's guinea pigs died. We had to have him put down. I was so very sad having to make the decision when I took him to the vet. Part of me felt like we hadn't done enough and maybe we should keep trying but the vet reassured me we had done more than most and it's very unlikely he would get better. He had lost so much weight already and looked so very sad. Layla was devastated when she came home from school which broke my heart.

We talked about it again tonight before I put her to bed and she told me she was glad i made that decision. She said it would have hurt her so much more if she found him passed away in his cage like she had one of her guinea pigs not long after we returned from overseas.
That is clearly deeply imbedded in her memory. It made me feel so much better about making that decision. I love my girl so much.

Everyone is now asleep except me and I think Layla may be still awake in her bed as well. I do hope she gets herself off to sleep soon.

I've really struggled this past week and felt at times in desperate need of speaking to a professional. I really miss seeing my psychologist. Just to have someone I can bounce what's going on in my head with, without being judged or misunderstood. I've really missed that. It's left me really confused at times and extremely sad. She was able to make it possible for me to understand my emotions and feelings so that I don't feel like a crazy person. As every new situation arises that stirs emotions inside me, I feel at a loss. In new territory that I'm no longer familiar with. My emotions are already running on an all time high 24/7 so when something occurs outside of what already exists in my life I'm overwhelmed. It seems impossible at times to allow anymore sadness in yet it comes. Flows and overflows.

I don't know if I'm making sense and if I'm not then that in itself makes sense. Because i feel so overwhelmed. I don't know how to draw back my emotions. Stop myself from being so emotional. It's just there, all the time.

My little man and my other two kids mean the world to me. Watching him play today, having a big long chat with him this morning when he caught me out the front chatting to a mum, everything about him. I love. I couldn't imagine living without that smile. And I'm so scared I will one day. The fear escapes me at times when I don't expect it to and I find myself fighting back tears. Because it's always there, 24/7. Even when I think I'm not thinking about it, I am. Because it's real, and it's there.




Love my little man.

Sunday, 27 October 2013

Weekend, scooting and jumping on trampolines.

It's Sunday night, everyone's asleep . The end of another weekend. A good weekend. It's always good to be home with my kids and I never stop appreciating that.

Saturday I spent most of the day with Jayden on our own as danny was at his course and Luke and Layla had play overs at their friends houses. It was really lovely just to hang out , play Lego and dig holes in the sand. We couldn't go anywhere as our car has broken down but it was nice to be home and just be.

I had so much washing to do and dinner to prepare but I just wanted to be with my little man. He's also not very well again still so he wasn't up for me doing anything else but being with him.

His Nanna popped over at lunchtime for a little while which was lovely. Always is. Really love my mother in law. Very special lady. And Jayden adores her.

Kids were soon home and Danny later and that was our Saturday. Sunday came and went much the same and now I'm sitting in the kitchen when I should be asleep.
But I wanted to put in this blog that Jayden is now riding a scooter! I'm so very excited for him as it wasn't that long ago that I really didn't think he would grasp that at all. He did. Today he was scooting like a champion and I was soooo very proud.

What I really love about my kids (among a million and one other things) is they share my joy at seeing Jayden accomplish things. They know that it's harder for him than them and they know he has been through a lot. So when he learns something knew like standing on a scooter and pushing with one foot and the other on the scooter, they are shouting out to danny and I to come see. Their faces beaming with joy and so very ,very proud also .

They did it again this evening when Jayden was able to bounce properly on his little inside trampoline. They both screamed with joy "mum !!!! Come quick!!! Jayden's bouncing on the trampoline! He's jumping properly". I came rushing in to see the pair of them watching him with huge smiles on their faces and oozing proudness. I just wanted to capture that moment write then and there . Layla and Luke watching on, Jayden using all the energy he could muster to bounce because he wanted to please them more. I so love my kids. Precious, moment and wanted to write it down so that I will never forget it .


Some pictures from the weekend...


Jayden with his Lego creation. It's a house boat. Cool.



Hiding from the camera . He's so sick of me taking photos.



The hole Jayden dug. He insisted on me taking a photo of it without him in it. :)


Managed to snap that cheesy smile whilst on the move. Looks like a little man in this picture . :)


Eating his lunch today out the front . He has a mouthful of food and wasn't happy with me snapping . Bless . Love my little man .




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Friday, 25 October 2013

A beautiful woman

Jayden has croup again. He caught a cold again and again it turned to croup. Fortunately I still had steroids left so I gave him some and he's much happier today.

Im trying to focus this blog on Jayden and childhood cancer however my thoughts keep tracking back to a beautiful lady and friend who was laid to rest yesterday. I didn't mention her yesterday or this week as I didn't know whether it was my place to do that and for such a wonderful person as she was I didn't know if I could find good enough words to describe her or the loss our world now has without her in it. But I know she read this blog from time to time and I feel I owe it to her.

A beautiful woman who had a life full of love, beautiful children, wonderful husband and family but was taken far too young.
I didn't know her as well as some and our relationship was forged through the nightmare we live. She had cancer and that's what took her. She was and always will be remembered as the beautiful giving person that she was. A selfless, caring woman who was always there for others. We had many conversations about life and death and she gave me some peace in this journey we now travel. She had an understanding of our journey that only those travelling similar journeys would and she was a truly supportive friend and person. She said to me once " if I had a magic wand leisl, I would use it on your son first", that sentence alone is a testimony of what a beautiful selfless person she was. Four children of her own that will miss her beyond words and family and friends that will forever have a piece missing in their life, that is her.

Like I said in my last blog it's difficult to rejoice in our situation when another family is suffering. And her families loss is a reminder of how fragile life is.

With every loss of a beautiful person and child I feel another peace of me is torn away. I know it's also a very sad reminder that we have to live every moment . Enjoy every moment and breathe .

I know that's what she would want me to do.


I'm having a rough week. With the good news of Jayden's scan is the knowing that not everyone has had good news. And it's difficult to sing hip hooray when others are hurting so bad .

I often feel I can't relate to people anymore that don't know and understand that sadness. Who don't see it or hear of it regularly and aren't living the nightmare that goes with that . I try to relate and remember what it was like to think normal and be normal, but I can't. Not anymore . My conversations that are most important to me aren't about school carnivals or my kids grades. And without that understanding it is difficult to build on relationships.

I've been exposed to so much pain and sadness that it's impossible to understand that without being exposed to it as well. Some days it's hard to just breathe let alone get out of bed. But I'm surrounded in most part by people who are not exposed to or living this? And thank heavens for that. This means however I live in a world that I don't fit into. A square trying to fit into a round whole. I may say things people don't understand or feel and I have to remind myself that they can't. To pull back and try and be normal for they may be offended by my words even though I don't feel they are offensive.
It is yet another reality check that this is a very lonely journey. I'm not sure if I'm explaining myself correctly but the way I look at the world now is very different from before Jayden was diagnosed. I wish it weren't. I wish I still saw it like the majority of people around me, but I don't. I wish I didn't feel the sadness I do for no longer being normal and I wish more than anything that my family was never exposed to this world we now live.




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Tuesday, 22 October 2013

It's late but tonight I'm exhausted and looking forward to bed. I'm sitting up however as my daughter has recently become anxious about sleeping. It started a couple of weeks ago and now I stay up every night until she falls asleep. Not that that's a huge stretch as more often than not I'm up anyway but I am worried about her. I'm hoping in time she will be able to get herself back to sleep as normal but for now I'm sitting On the carpet in the hallway by her door so she knows I'm awake and near. I have no idea what triggered it but I'm guessing she has been feeling my anxiety from the past couple of weeks . I was thinking I had been covering it well but children just see through that so easily .

I put my boys to bed much earlier and they were both asleep within minutes after reading books to them. Jayden was complaining of a headache before he fell asleep and then a sore eye and I told him if he closed his eyes and went to sleep he would feel better. ( I had to try hard not to worry about the headache, but I always will ).
I watched him scrunch up his face as he squeezed his eyes shut. Then open them. Look at me and say. "I love you so much mum in the best world ", I say it back to him. He closes his eyes again and I watch him as he falls asleep. Beautiful moment .love my little man.

Luke was asleep within seconds after Jayden and the two of them sleeping is just beautiful.
I had a great afternoon with luke today as I took him to his first guitar lesson. So happy and proud of him. The teacher told me he was a natural and I just felt so very happy and proud of him. Such a great feeling to be happy for him and proud instead of worried and concerned about everything. Love my big boy.

Jayden and I had a good day too. We did some gardening. We planted some vegetables in our garden and he just loved it. Digging the little holes, putting the seedlings in. Magic. Whenever I do something new with him I feel so happy that he's had that experience. I go to sleep at night thinking what we can do together the next day that will add to those experiences. I wish and hope I can give him so many opportunities to experience life and all the wonderful things in it. I really hope and pray I get that time, with all my kids.

So tired now, really need to sleep.....

Tomorrow we have our appointment with Dr Nick and see the report and find out all the details about the MRI from Thursday. Jayden had bloods taken that day as well so we will also get those results.
Hoping everything is fine.

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Sunday, 20 October 2013

Jayden has been a goof ball all day and has had us in fits of laughter for a lot of it. Precious little man who brings so much joy to our lives. Love him to bits.



It's late now. Everyone's asleep. I use to enjoy these quiet moments late at night when everyone was asleep when I could watch what I wanted on the TV and actually get to sit and watch it, and or read a chapter or two in a book. I can't remember now the last time I was actually able to focus on reading a book or really enjoy the time alone spent watching a tv show . The ability to concentrate on either left me the day Jayden became ill. In fact I feel as if sometimes part of my brain went as well. For I am forever finding it difficult to focus on conversations and my memory for things is useless without a diary . I know this is because my mind is full of concern for Jayden. So much so, that it has little room left for anything else. I also feel like with the loss of my normal way of thinking and living the feelings that replaced that in my body seem to consist of a big major chunk of sensitivity. It really doesn't take me much to cry, to be upset, or hurt, in fact any feeling seems to jump at me 100% stronger than before. I feel like I'm a nervous wreck, often.

getting back to my evenings now alone... Now my nights when I'm left alone I'm with only my thoughts. I busy myself during the day and there's always so much happening with kids in the house. But at night, no one Is distracting me, no one needs me for something, it's just me and my thoughts.
Most nights I hate this with a passion , especially the nights that come with the emotional waves. The nights where I find myself reaching for a sleeping tablet just to escape the thoughts that haunt me, as silence settles on our home.

Fortunately, Tonight is not one of those nights. I'm not on an emotional wave , Jayden had a clear MRI the other day and he's well. I know however it doesn't stop there . I'm very aware another wave will come , and more after that and before I know it another MRI in January. the constant concern of any unusual signs by Jayden will never cease and fear of his cancer returning will always be with me.

I spoke to another cancer mum today and we talked about how life is for us now. It made me think about how I use to feel before Jayden was diagnosed. " normal " was the first word that came to mind when I thought about that. For a brief moment when we were told Jayden's scan looks ok I felt that feeling again. Not exactly the same, as my mind knows better than to get cocky, but close. But other than those moments after you receive good news the " normal " feeling no longer exists in my life. And I know now as time passes it's a feeling I will always yearn for but have to learn to live without , and instead manage the feelings that are left.

I am grateful for everyday I have with my kids and when people talk about old people passing I feel happy for that person having been so blessed to have lived that long , rather than sad . When you enter this world you know children who have not been so fortunate . They never had a chance to live their lives. Knowing this and living amongst this really changes your perspective on this world and life. It's truly crushing and it makes you want to stand on every roof top in the city and scream it out so everyone knows. But more than that, you want everyone to care . That's the tricky bit . And that's the bit I truly don't get. How can people not care? The Facebook user I wrote to in this blog the other day has really stuck in my mind.

I went and visited a friend and her little boy in hospital the other day . Going back there to the wards was really hard . Really hard. I saw her at the doorway of their room and was welcomed with a smile and cuddle. Truly beautiful lady. One of those women you just can't not like, a treasure . On the hospital bed in the room sat her beautiful sweet boy . He sat with his back to me quietly playing with his mums phone. Watching home videos is his favourite. That reminded me of when Jayden was in hospital. He loved to see his siblings on video.
This little boy was sitting there quietly, so innocent, and cancer is robbing him from being a little boy and having the life he so truly deserves.
He has the most perfect beautiful bald heAd , perfect little frame, perfect little face, he has the biggest brown eyes (just like his mum) and he adores her so much. Perfect little man. But nothing in his life is perfect and I can't understand how anyone could not care. A walk into those wards and it's truly heartbreaking. I know what it feels like to be in there and I will always know what it's like to be a cancer mom. It hurts. Hurts like hell.

I wish I could take the feelings I felt for that little boy as I stood in his hospital room and place them into the hearts of every single person that is able to make a difference in this world. Let them feel how much I wish I could change this for him. I wanted so bad to give him a big hug but In That hug I wanted to have a cure. Rap him up in my arms and cure him. Fix him, give him back the life he deserves and allow his mum and dad to see him grow into the man he deserves to be. And believe me , he would be a great man. I'm not exaggerating when I say his father is truly one of the nicest, kindest, men I have ever met and a true gentlemen. Honestly, beautiful, beautiful fAmily. He would be destined for great things, I know it .

I was truly gutted when I left that mother and her child that day. Before I left I helped make their hospital bed with new sheets and it made me feel good that I was able to do something even if it was just to make them comfortable for a short while. because other than raise awareness and contribute to cancer research, I'm helpless. I can't change if for her son just as I can't change it for mine. And I hate that feeling. The feeling of complete helplessness for a situation you want so bad to change. I walked out the hospital that day and I felt an overwhelming sense of sadness that has become so familiar. The innocent of this world I once knew ( like a good friend of mine said recently) is gone . This is what I know now, and it's truly, sad.







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Thursday, 17 October 2013

Jayden's scan is clear! The relief of hearing those words is like no other. To feel normal if only for a short while is truly bliss. No one should ever take that for granted. For when it's taken away, you yearn for it like no other feeling in the world.
To look at my son and for a moment, not worry. To see him trip or wobble and just think " that's ok", is amazing. When he complains of a headache last night to be able to think "it's just a headache " is phenomenal. I can't stress enough how wonderful it is to feel normal for a while. Even though I know it won't last long, I cherish these moments more than anything in the world. To know my son is ok, even though there's no guarantee for the future, just to know, today he is ok, is truly beautiful. I have learnt that that's how best to live this journey. Appreciate the moments I do get, for I know others don't and I know how damn precious they are.

I am so very grateful for this day.




Jayden asleep from the premed, just before going in for his MRI. Which of course he woke just before and the nightmare of watching him pinned down on the table to put the mask on his face, screaming to go home, with me helping and trying to reassure him everything is ok. Awful. Never, ever do I get use to that.

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Wednesday, 16 October 2013

On our way


Haven't slept a wink. If I had, it doesn't feel like it. We are up and getting ready to head off. I have done this long enough to be fully prepared so now it's just shower and off we go.

Jayden is sitting at the table with his brother reading books together. I truly believe Luke understands a lot more about this situation than I often give him credit for. This morning their happy sharing a book together. Love my boys .



Had my big cry last night and am glad I did. I was able to join my daughter afterwards to watch the bachelor and get lunches and bags packed for today. I always try hard not to show my fear and anxiety around my kids but I think they are far more perceptive than I give them credit for. But I try. I Always want them to feel safe and secure and to not have to worry.

Jayden woke up with a big smile as always this morning and the first words to come out of his mouth were " mummy i want a cuddle!", my goodness, no problems there. Squeezed him tight in my arms and soaked that beautiful moment up. Took a deep breath in and enjoyed that precious cuddle. A huge urge to cry was in me but I didn't. Gave him a big smile back, told him how much I loved him and we got up together to join Luke and dad.

Jayden later went to wake Layla up and climbed on her bed for a cuddle.





Loves his big sister. Another moment I wanted to cry, but didn't. I can feel the tears inside so desperately wanting to pour out but I don't let them.

We have just left. On our way. Praying and hoping everything will be OK.


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I thought I was coping. Being strong. I thought I was getting on with the day as I should. I know I was keeping it in, I've become good at that. Holding back the emotions. Now I sit here in the bathroom with tears running down my face with the overwhelming feeling of fear. I'm so bloody scared about tomorrow.

I try to be positive but the reality of this situation alwAys pushes those thoughts away and replaces them with fear.

I just put my little man to sleep, snuggled up into my arms until he drifts off then I ease my way out. I wanted to stay there. In that moment forever. Snuggled up to him. His beautiful little face. Perfect little nose. So warm. So comforting. He cries a tiny little cry as he falls deeper into sleep and I gently snuggle him in tighter to let him know I'm still there.
The thought crosses my mind that one day I may not have these beautiful moments and I quickly shut it out. For my mind cannot leave it there. I cannot mentally cope with that thought. Not today, not ever.

And now I sit here wishing so hard that life were different. That somehow someway I would not hurt so bad or fear with such pain. I want so bad for everything to be ok. For the doctors to tell me Jayden is going to be ok, that he will always be ok. What I wouldn't give for that.






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Monday, 14 October 2013

Dear Facebook User

A friend of mine recently told me that she had read a post made by a Facebook friend, regarding her news feed. On it she complained about the people who post things about childhood cancer and how she wished that they would keep it to themselves as she doesn't want to know about it.

Naturally I initially was furious with her ignorance as was my friend (also a cancer mum) and my first reaction was to post something in reply. However acting on emotions would only fuel her complaint and that's just not clever or brave. So neither of us posted anything.

I thought about it all night and woke up with it still on my mind.
Trying to understand why someone could feel that way and how sad I felt about that . Sad for the many children fighting this disease and extremely sad that anyone could not care. I understand however that Many people don't wAnt to know about the atrocities in this world as it then Unfolds their lives as not as perfect as they would like them to be. It's better to know everything is "tickety boo" and feel good about the day than to know someone is suffering. Especially a child.

Now that I have thought about it long and hard the message I would write to her would be quite different from my initial reaction. If I did post something to her it would go a little like this:

Dear Facebook User,

My name is leisl Stone and in march 2012 my youngest son, then 1, was diagnosed with an aggressive brain tumour.
Before my son was diagnosed I knew nothing of childhood cancer. I knew it happened but I was ignorant and naive enough to believe it happened to " other" people, not me. I'm not sure who I thought "other" people were but I soon found out it could be anyone of us. Cancer isn't discriminate it can touch anyone and as I found out, my innocent baby.

When my son was diagnosed the pain I felt was like no other. The sadness, the fear, the anxiety was like nothing I had ever known or would want to know. A pain so great you would not wish it on your worst enemy. A pain that made me feel as if I was being ripped from the inside, out.

For the next eight months I watched and allowed my baby to go through the most horrific treatment and procedures no parent should witness ever, in order to save his life. Tear after tear, scream after scream, cry for it to stop, over and over again... Still rings in my ears today.

When he was diagnosed I wished I had of known more about childhood cancer, I wished I had of done more, noticed more, made myself aware. I wished I had of raised awareness to others, stood on every corner asking for funds for research. Because if I had of and every person I knew, then maybe, just maybe they may have been closer to a cure for my son. But I didn't, I remained ignorant until that day, and it is NOT the way to learn this lesson.

Now I want to raise that awareness to others because I don't want anyone to ever feel the pain I feel everyday. I don't want any child and parent to go through what I do. So if posting information about childhood cancer makes it possible for someone to detect cancer in their child early, which could potentially save their life, then great! And if raising awareness means people help fund childhood cancer research then double great!

Please Facebook user I beg you to open your eyes, see what's around you and be aware. I'm not asking you to read every post or watch every video but know that it's very real. And Join in helping raise awareness and funds don't hide away from it. if childhood cancer does ever touch your life, and I so hope it never does, you will be so glad you did do something....trust me on that.

Leisl


I won't post this on her Facebook because sadly I doubt she would read it but it's what I would send if I thought she would.

Instead I post it hear on a forum where I can express my feelings and know that they are heard by people who want to listen, who do open their eyes and hearts and I commend you for that. You are the brave ones. The people that don't shy away from the atrocities in this world but rather face them head on and make themselves aware. I have no doubt you read other stories like mine and support organisations that are helping to change childhood cancer for the future. I want you to know how glad I am that there are people like you all in this world.

Thank goodness for you. Xxx


Sunday, 13 October 2013

Time, blood results, night out and new friends

It's been hard to find the time to blog lately as I don't want to be sitting on my phone or behind a computer when my kids are home and needing me. Have been loving the school holidays. My kids have been greAt together, apart from a few hiccups with Jayden and Luke. It has been So nice to see them all play together and Jayden has been loving it.

We finally got his blood results back on Friday and his ESR is really high. This is indicative of inflammation somewhere but they don't know where. My GP consulted with DR Nick and they decided I should just keep and eye on him, take his temp twice a day and do the "wait and see approach". Fortunately Jayden is a lot better and today we are all going to join Cassie Lovering and her family and followers to welcome the walkers who have walked an extremely long wAy to raise money for childhood cancer.




Jayden's still coughing a lot which sends me into a tail spin every time as that's what he use to do before every vomit . His scan is this Thursday and of course , as always, I'm completely beside myself with worry.

************

We are now on our way back home from the wonderful picnic. Truly lovely to see the turnout, beautiful day, beautiful people, can't really ask for more.
Met a couple of new people, one who's followed Jayden's journey and a beautiful lady. Thank you for introducing yourself.

Jayden's asleep in the car and was very whiney a lot of the time we were there. I should just put it down to him being tired but I can't help but think it is more. Headache? Pain somewhere? Never something simple, always thinking the worst.



Above: Jayden asleep in the back of the car, still holding his balloon from the funday for the walkers.

I hope after Thursday we will have some good news so I can breathe a sign of relief, even if only for a short time.

I am speaking with dr goldman tonight, finally, and looking forward to that. Hope he has some good news to tell as well about studies into cures for this dreadful disease.


I forgot to mention that I went out on Saturday night to the fundraising event for The walkers from Harvey's Courageous Pride.



I bought my ticket in the morning but wasn't sure if I were going to be able to make it . Part of me just wanted to stay home like I always do, and the other part told me I had to go to support this wonderful mother and family.
I'm so glad I went . I went solo as danny had to work and was greeted by Cassie soon after walking in. Big hug , love this lady like family. I Wish so much I could do more for her, take away her pain, make Life not so hard for her. She deserves that and so does her family. Truly wonderful people.

I met so many lovely people that night. I already knew a few as parents also travelling this journey and a few new faces too.
I'm so very glad I went. I had a laugh, a cry and felt so comfortable amongst people who care and "get it ". Truly magnificent night.
I also finally met the face of a beautiful lady who writes to me over Facebook. It's so lovely to meet people in person who you feel like you know over the Internet. She was exactly how I expected her to be. Just wonderful.

I'm going to finish now and join my kids picking mulberries. Here's some photos of them over the last couple of days....



Jayden playing in our car yesterday.








Out having morning tea at a cafe complete with little waterfall, with the kids on Saturday


First thing in the morning Saturday, playdoh cupcake for mum. Mmm yumm


Playing on a slide out in Fremantle Saturday.

Love my kids. Pray they will all be ok. Hope that Jayden's MRI will be all good on Thursday. Hope with all my might for that.




- Posted using BlogPress from my iPhone

Thursday, 10 October 2013

No results, Morning tea, trampolines and memories

Jayden is much better today. Still unwell but happier. He fell a couple of times today which always stresses me out, as anything to do with his balance is a concern. I still haven't heard anything regarding his blood results but am confident my GP will call me as soon as he's heard. Hoping all is fine.

He's snoring next to me at the moment. His breathing sounds awful as he is so congested but he's asleep and that's a good thing. I always hope that while he is asleep his little body is working its butt off to stay well. I so hope and pray for that.





This morning my daughter and I were invited to a tea and cake morning with a wonderful lady and her daughter and her wonderful friend and daughter.
Previously to this morning I hadn't met either women. One of the ladies had reached out to me via this blog and invited me to join her and her daughter for a morning tea. I was a little nervous at first, stepping out of my comfort zone to meet people I didn't know and leaving my little man behind. However I'm so pleased I went.

It never ceases to amaze me how wonderful people can be. My daughter and I had a lovely time and I truly felt like I had made two new friends that I hope will remain so, for a very long time. Just lovely, wonderful, caring ladies. So happy they reached out to me and so very, very appreciative to have been in such wonderful company.

I was pretty happy to come home to my boys also and was welcomed with squeals of delight from Jayden. How he makes me feel so loved, they both do. Love my boys.


I hung out with them for the rest of the afternoon and it was beautiful, as always just to be in their company.

One of my special moments today was jumping with Jayden and Luke on the trampoline. I don't often get on there as after three children jumping is not the best idea for me. Anyway, moving right along from that topic, we had a great time. I was holding Jayden's hands and doing small jumps, I looked down at him looking up at me and his smile was priceless. He had the hugest smile and through it he was laughing so hard. I thought for that moment how much I wish I could capture it so it would last forever. Have it etched in my memory forever. Just magic.

I have so many moments with him and my other two that I wish I had a video camera pinned to my forehead so I could catch them all and have them forever. I always worry I will forget those moments. I hope not. I hope I remember each and every one of them.



Yesterday was another beautiful time I hope to remember for ever as well. We had a really nice day in, all of us just playing Lego and other things fun. In the afternoon we all went out into Fremantle. We had a wonderful bite to eat at a very child friendly restaurant, love those restaurants and played in the park afterwards.



Moments to cherish forever. Love my kids.

With every beautiful moment I try to soak it up, love and appreciate having it. They will always be clouded with fear of the future but I won't let that stop me having them. All I can do is hope and pray that I get a lifetime of them from all my kids. I will always hope and pray for that.

Tuesday, 8 October 2013

Jayden's still unwell. I feel like he's had back to back viruses for so long now. Back into the doctors yesterday and into PMH for more blood tests today. My GP is worried he's missed something and wants to make sure there is no infection anywhere.

So first thing this morning we headed in together to PMH.
Jayden being that little bit older is so much more aware of what's going on. He knows the hospital and he knows things happen to him that he doesn't like there. So when we arrived in front of the doors of where his blood is taken his mood changed instantly. He began to cry and wouldn't go in. But he knows he has to and with some coaxing I was able to get him to walk through. We waited reading children's books in the waiting area until his name was called. Amongst the people waiting were two teenagers with their parents. Both from ward 3b. I sat there thinking how this is their life and no one outside of that really knows, understands or gets it. It's so damn unfair. Within the walls of that hospital is so many kids truly battling life and shouldn't be. Struggling when they should be enjoying life.

When Jayden's name was called he instantly started crying and asking to go home. Screaming at the top of his lungs and begging me to take him home. by the time we were seated it took two to hold him still. God I hate doing this to him. Most kids his age wouldn't even know what was about to happen but Jayden is so familiar with it it's truly heartbreaking. Fortunately these women are wonderful and it was over in seconds AND most importantly we were able to go home. So damn grateful for that. So happy to leave.

Jayden was still crying on the way out and didn't settle until we were driving out of the car park and on the way home. Thank goodness for home.

No results yet but hopefully tomorrow.

He's asleep now laying next to me and besides this morning he has definitely had a better day. His cough is still shocking and he's not 100% but he was happy today.

He had a beautiful time with his sister playing this morning. God I love how my kids are with each other. Layla really loves her brothers and is such a treasure with them. Love my big girl so much.








We all had a day at home today and it was really lovely.



I had an awful night last night and the night before. Plenty of tears. The wave was due and it hit hard.
Today I woke up though and time spent with my kids has eased me out of it. Still insanely worried about Jayden but I know I always will. Truly frightened about his approaching MRI date but trying not to think about it every second of the day.

Hoping and praying that everything will be ok. Just want all my kids to be ok. Always.

Sunday, 6 October 2013

I wrote an entry this morning but didn't get to finish it to post it. Now I've discovered the little girl I was writing about has since passed.

A little girl who has been fighting ATRT, Phoebe Fair. I have followed her families journey since Jayden's began and her father was one of the first people that made contact with me in the beginning of this journey.

A beautiful girl from a beautiful family.
I can't believe another baby is gone. And nothing seems to change.
I'm truly gutted.

I now want to post my unfinished post, simply because it doesn't feel right to delete it.

Phoebe Fair, a beautiful child also diagnosed with ATRT. So many out there. I have followed her journey since Jayden's began. A truly beautiful family and most precious little girl. Please pray for her and her family. Send her messages of hope and support. Her mother writes a blog, a beautiful blog, a very gifted and lovely lady. http://atypicalmiracle.com
And they also have a Facebook page Praying for Phoebe Fair.


I can't tell you how gut wrenching it is to know another child is slipping away . When I saw her post this morning my heart sank. If ever there were a picture that told a thousand words it would be this one. Only no words would truly be accurate or enough, to describe this heart wrenching scene.

It is her daughter there in the photo and inside I hurt so bad that one day it could be my son. But this isn't about me or my pain. It fuels my fear, there's no doubt about that. It scares me beyond belief. But that is nothing in comparison to her mothers pain and her family.

My hurt I feel is also knowing the reality of this excruciatingly hard journey. The reality of childhood cancer. The reality of the possibility of losing my son.
I watched parents today in the shops with their children and I envied them. They don't know that reality, they don't live it, breathe it. And I was once one of them. We don't realise how lucky we have it until it's taken away, there's no doubt about that.

I so wish I could change things for this family, a magic wand, a miracle cure. Phoebe is a beautiful little girl with so much spirit and courage. I so wish this wasn't happening to her and her family.

I don't know how a family survives this shit. Truly I don't , and every time I see or hear it happening again, inside I break into tiny little pieces. Spending the rest of my days putting them back together until the next break. But when a family does lose their child how do they ever put those pieces back?

It's not enough anymore to just say childhood cancer sucks. It never was. It's insane. It shouldn't happen. It's all so very wrong.

************



- Posted using BlogPress from my iPhone

Friday, 4 October 2013

Today I ran into a beautiful friend whilst In the grocery store. She has lived this journey as well. She sadly lost her son. We stood in the aisle of the shop talking about what only we understand, about our lives as they are now. The hurt, the sadness and living this journey. She told me the day her son was diagnosed with cancer was the day she lost her innocence about life. No truer words spoken. No longer do I have simple complaints or know nothing about real pain, or real emotional heartache, real fear, real sadness. No longer is my life about knowing only the easy bits.

We both cried as we spoke. People walking past doing their shopping around us and us in what seemed like a bubble. A bubble of our own that nobody else other than those that have travelled this journey could possibly understand what it's like to be in. A world within a world as I've referred it to be before .

As I stood there listening to her talk about her recent very difficult days my heart ached. I felt her sadness, her tears. I see in her face her suffering, trying to live her life without her son and it pains me so. I know the fear and hurt of just the thought of it and that is truly unbearable and I'm so scared.

I love this woman like family. This journey is the most emotional and hardest journey I've ever travelled and when you meet people who have been there, it feels like you've met a family member. And you have that sense and need to be there for them like family.


I'm really tired now and I know I need to sleep. My little man is asleep next to me and he's still not well. The next MRI is under two weeks away and I'm so very nervous. It feels like he's been sick on and off for so long now that I'm worried out of my mind.

He's still not himself but no more croup. He still has a cough and yesterday a temp but today no temp just a cough. However this afternoon he had diarrhoea, again. He's always complaining of a sore tummy and he seems to have had diarrhoea a lot lately.

I don't know what it is but I'm definitely thinking something is going on with his tummy, among other things. I know I'm in for a rough night as he's been stirring and grizzly while I've been writing.

He looks so beautiful. I love him so very much that it hurts . As the words go onto this screen my heart aches. It aches so bad with the fear of ever not being able to hold him. Be his mother. Cuddle him when he's sad, laugh with him when he's happy.

I took him and Luke and Layla out today and we had a lovely time. He refused to get out of his pjs, again and I'm just not going to get into that argument with him. So we went out just like that.







He had such a lovely time even though I knew he wasn't feeling himself. He just takes on everything using as much energy as he can muster and I truly admire his determination to live life to the fullest.





He makes me laugh, smile and reminds me to live in the moment.

I can only hope I get years full of precious moments with him and my other two beautiful kids.
I so hope for that.


Tuesday, 1 October 2013

Croup

It's Wednesday morning, early and Jayden's asleep on me. He woke up early as he normally does but has fallen back to sleep which he never does but I know it's because he is still unwell.

I took him to our GP yesterday afternoon and he gave us a prescription for steroids as he has croup. Yesterday morning after a night with high temps he woke up with the signature barking cough of croup. He coped with it well though and after some Panadol he was back to his happy self.

Danny's wonderful mum came over and her and I took the kids to the aquarium. It was a bit adventurous of us when Jayden was unwell and we almost turned around. However I'm so glad we did go as Jayden had a wonderful time and so did Layla and Luke. I have to say it was one of the best days I have had in a while as well.

It wasn't busy so the kids were able to see all the exhibits and touch the fish in the touch pool. They were delighted with that. It truly gave me so much joy to see them so happy and to see Jayden's face light up when he touched one of the fish. Just priceless. It just means so much to see him experience these simple joys. Just the best feeling ever.






He did so well and it wasn't till we were leaving and no doubt when the Panadol was wearing off that he was looking weary and feeling unwell again.

But while we were there he was full of beans and really enjoying himself. That just means so very much, to see him happy.