Tuesday, 30 October 2012

A super tough day


I was so tired last night that I didn't get to finish my blog entry. I never mentioned the wonderful woman I had coffee with in the morning or the response I got from Nick and Dr goldman in relationship to my concerns about Jayden.
But before I do, he woke again this morning and vomited straight after his milk just like the other day and the two days before that. Yesterday he didn't and I thought we were on a win but last night when we went to bed he sat up and asked for a sick bowl. He didn't vomit but you could see in his face he was trying desperately to hold one back. He succeeded but not for long as this morning he did.
My gut feeling is its back. Just like my gut feeling in November of last year.

I sat with him in my arms this morning after he vomited and cuddled him tight. We watched TV Together and I didn't want to let him go. I had lunches to make, uniforms to sort, washing to do etc but none of it mattered right then. It can all wait. As I know there will only be so many of these hugs I will get and then one day they may be gone, forever.

I'm having a really shit day today and I don't know what I'm suppose to do. I feel so desperately alone and so damn sad and I just want it all to stop. People have said I'm an inspiration but I just can't see it. Right now I feel like I'm doing such a crap job of it. I know I should be smiling and enjoying my beautiful son while he's here and I worry I will live to regret spending so many days sad with him when I should have been happy. Today however is super tough. My husband seems to have become so distant at the moment that I feel even more alone than I did before. We deal with things so differently and right now I just feel like he's absent even though he's here.

I feel like I can't breath properly again and I know it's the anxiety. I so yearn for my healthy boy back and my normal life. I just want to be able to get up in the morning and not hurt. Not feel so shit everyday and not so bloody sad.
I'm doing all the things they tell me to do, take antidepressants, see a counsellor but nothing is taking this overwhelming sadness that covers me every day. I want to laugh again and really mean it, have those moments of happiness that last for ages rather than a few seconds. It's so very, very hard.

I met with a beautiful woman yesterday for coffee. A true inspiration and someone I feel I will forever know and have as a friend. After being with her I was able to get through the day and remember what's important and try to focus on that. I'm trying to remember her words and say them over in my head today but sometimes this sadness is so overwhelming that no words are enough.

Yesterday I received a letter from Dr Goldman telling me I should get Dr Nick to see Jayden immediately and at the very minimum get Jaydens ventricles checked. He said if it has come back this soon then he is very glad we never did round three as that would not have been helpful. That same day I get a phone call from Dr Nick who tells me it's not likely to be back and not too worry and he's sure there's some other explanation and just to see how he goes in the next week or so? How different two doctors opinions can be on the exact same topic? If there is anything Anyone who reads this blog can learn from this is that to never ever take the word of just one doctor for Anything you are truly worried about as their opinions can be so different.

Im sitting in a carpark over looking the swan river with my little man asleep in his chair. I went and saw my sister earlier and now I'm parked and writing here. It's a cloudy and windy day. I watch the trees blowing in the wind and try to remember to breath, to relax. The tightness in my chest is unbearable and I just want to cry. Sometimes it's so unbearable I just want to die. But that thought is quickly diminished because I have three beautiful children that need me. It's them that keep me going. It's their smiles when they come home from school that reminds me to suck it up. Their hugs in the morning their chatter about stuff and things and their blissful unawareness of how shit life can be. It's beautiful. I want to be inside their heads and feel that unawareness again. Pretend that nothing is bad in our life and truly live like that.

There is no doubt the best thing in my life is my children. I feel so incredibly blessed to have them all and what wonderful medicine they are for me. No money can buy that. Their unconditional love, everything about them. They are all so individual and so very special.

I wish I could be guaranteed to see them all grow old. But I know there are no guarantees in life. Only today. I know I'll get through today because I have to. And tomorrow. But I'm buggared if I know how to stop this damn hurting.
- Posted using BlogPress from my iPad
I'm sitting in the car yet again while my beautiful little man snoozes. The kids are at school and Danny's out working. I'm in a shopping car park of all things as danny needs us to pick him up but I don't know how long he'll be. For that reason I thought I'd start writing.

I had my first full nights sleep last night and funny enough I feel even more tired than before. I think I finally slept through due to sheer exhaustion and worry. I have been so anxious these last couple of days as I have been so worried jaydens tumor has come back already. I know too well that this can happen and its got me stressed out to the absolute nth degree. When we woke up this morning i gave jayden his milk and sat there waiting with a bowl for him to vomit. For the first time in days he didn't and i felt like screaming at the top of my lungs with joy. Instead i danced around the room and then gave him loads of cuddles aNd kisses. Im sure my kids think I'm crazy. And in some small way I am. I know I'm going crazy with living with this anxiety, there's no doubt about that.

I can't even put words to how it feels to live like this on a day to day basis. I can't put words that can truly describe how painful it is. To live constantly reminding yourself to smile when your around your kids and have a happy demeanor when all you really want to do is cry and wish life was different. The constant anxiety every time I see my little man vomit, wobble on his feet and fall down or any other symptom that I can associate with recurrence is truly unbearable. Yesterday was definitely one of my hardest days.

Yesterday I didn't know how I was going to get through the morning let alone the whole day. I eventually phoned a beautiful lady I met when we were in the states who also has a child with the same condition. She would have to be one of the most inspiring people I've ever met. She told me that she wishes she could say it got easier, that with time I won't be so anxious but she couldn't. This is my life now and somehow someway I have to find a way to get through it. I haven't found it yet and I'm guessing I won't anytime soon and that maybe I just have to hope with each morning that the day it brings is less harder than the one before. I'm not sure if that's possible, I'm not sure about anything. I only know for certain that this road is the most difficult road I've ever travelled and truly the most painful.

Its evening now and I'm shattered.....

Sunday, 28 October 2012

Sunday morning

I'm sitting next to my son sleeping and watching him blissfully resting. Wishing I could be doing the same but it seems lately I have a bad case of insomnia. Would all be fine if it were possible to manage on little to no sleep but we all know that can't be done although I have to say over the last six months I've had a good crack at it. What's worse is the lack of sleep makes for a cranky mum and that is something i really don't want to be. I even growled at Jayden today and it made him cry, which made me feel Like the worse mother in the world. Guilt is a word i discovered when i became a mother but never more so than at that moment, sick child, crying, because I'm cranky. Awful, awful, feeling. Poor little man, as if he hasn't been through enough. I spent the rest of the day and evening trying to make up for it.

Its the next day now, sunday morning. I had yet another crap night sleep and I'm beginning to wonder if that will ever end. Jayden woke up and did a huge vomit this morning just like yesterday morning and i cant help but ask myself, surely not? Surely it hasn't come back already? How bloody unlucky could we possibly be? I don't even want to think about it but how can I not? I so don't want him to be spending Christmas in hospital and I know I shouldn't think like that but I also know this is a savage cancer and a very real crappy possibility. Honestly, this is so unfair. If it did come back that soon I would have to ask myself why did I bother with treatment at all. And I'll certainly know that the mega therapy was a complete waste of time and only proved to torture my son for nothing. I still can't believe it's the only form of treatment that the medical profession provides. It's so hard not to be angry sometimes and even harder not to be when I'm so damn tired.

The kids are out playing By the mulberry tree, Luke and jayden both love eating them and Layla and Luke love picking them. I can hear jayden and Luke arguing now, doesn't take long. the nicest part of their relationship is its so normal. I love that Luke doesn't treat him any different, it makes jayden feel normal then and it's so healthy.

The other day I took them both over to the park and they both wanted to play down the oval, as we headed down there I realized some mums from school were there and I felt a huge panic attack kick in. I told the boys we couldn't go and headed back to the park. Jayden was mortified and Luke wasn't too happy either but in some way seemed to understand. When we finally got home he asked me ' why didn't you want to go to the oval mum?' I said " I'm just not feeling like I can talk to some people just yet Luke. I will one day but not today?". He said "is that because they ask you about jayden and then you talk about him and that makes you cry?" and I said "yes darling that's right. One day I will be able to but not today." hes so intuitive it amazes me. So wonderful with his brother and so aware it's amazing.

It's not that I don't like people asking me about jayden because it would actually bother me if they didn't, I just think not everybody knows what to say or do and if I do start crying that may make others uncomfortable and i know it has in the past and I don't want to make people uncomfortable as that is not helpful at all. I believe I should feel ok about having a cry but not everyone has to bear witness to that. That's why I reserve those conversations to those beautiful friends of mine that are happy to lend an ear and a shoulder and sometimes cry with me.

Today was one of those days where i desperately needed to cry. The thought of jaydens cancer already returning was so overwhelming that i felt a huge need to ring one of my friends and ball my eyes out. Then i remembered what my councillor said and that was, to be ok with the feeling of the fear of losing him, acknowledge it, that it is a possibility but then put it away somewhere and leave it. Easier said than done of course. But I realized all the worrying in the world is not going to stop it coming back. That I just enjoy today and be the best mum I can be because that's what I do have control over. Not his cancer or what happens in the future.

I wish I did have control of it but I don't.

By the end of the day however, i did have that cry. Danny came up to me and asked me if i was ok as i sorted the washing. out it came. Im just so very scared and theres no getting around that.
I wish there were. I wish I could feel at ease with it all, find some real peace. What a bloody nightmare I'm living that I just don't get to wake up from.



- Posted using BlogPress from my iPad

Friday, 26 October 2012

NG tube out! Yah!

Today danny and I decided we should take jaydens NG tube out. We had been thinking about it for a few days now as he has been increasingly eating which has been brilliant! today it was fast forwarded however as we got some vege juice stuck in it and as the day progressed the blockage seemed to be getting worse. So this evening with Luke looking on and encouraging Jayden all the way, I quickly removed his tube. Luke was so excited to see his little face again and so was I! It was just so beautiful to see ALL of it with no bandage or tube coming out of his nose. Just beautiful. Truly, truly wonderful. Jayden was a little shell shocked as the tube is never nice to be taken pit and he cried for sometime but not for long as we were too excited for him! We raced out to the kitchen to show Layla and dad and they were super excited as well then we went over to our neighbors and Jenny and Mick were ecstatic! They were so happy for him and immediately served him and Luke up some soup! Hilarious. Italians are beautiful people, love their food! Really wonderful. I love his little face so much and I am so glad to see all of it again. Yah!

I have to say I've had a better day today. Not only because jaydens NG tube came out but also because my son Luke received his first merit certificate at school and both Danny and I were there to see it. It was truly magic as previously we have been in hospital and missed anything like that. he was all smiles standing on the stage holding his merit certificate in front of him alongside all the other kids that received one. I was just so proud of him and I don't think I've had a moment like that in so long where I was able to think about one of my other kids without worrying about jayden. for that moment I was truly absorbed in how happy I was for him standing there all smiles. He is truly a beautiful boy and my god I love him to bits. I know him and Layla often feel left out and at that moment watching him standing there I was reminded how little he was, young and innocent. But Both my kids have had to grow up so fast during this awful time and lost their mum for such a huge part of it and in some ways they still have. I just wanted to race up to him there and then and give him the biggest cuddle ever and tell him how proud i am of him and how much I do love him. When he got home later I was able to give him that big hug and tell him that.

I also had a visit from a wonderful friend I've made through all this crap and her beautiful boy. It was nice to be in the company of someone who truly understands this nightmare. Not long after she left I made a phone call to another mum who also understands this mess. I know now that I need to be able to do that. To reach out to others and find my way through this whole mess without completely falling apart.

I'm so tired now and everyone is snoring, exactly what I should be doing. I hope one day that will be easy for me to do, maybe tonight it will.... I hope so.

Thursday, 25 October 2012

Parent support group?

Very tired tonight. I took a sleeping pill last night as my anxiety levels were high and i knew i would just lay awake tossing and turning. So today I woke up even more tired than the night before and feeling groggy. Jayden woke up chipper at 6:00 am, but I have to say I never complain as every second is a gift with him.

He's eating a little bit now as we took his feeds off at night and he's having a bit for breakfast. This morning I made him pancakes and he ate nearly half of a vey small one! Very exciting. We are hoping we can get his nose tube out soon so he can look like a normal little boy again and no more stares! Yay for that. In order for that to happen though we also have to work out a way to give him his medications by mouth. I tried to give him his ondancetron by mouth tidy and he spat it out in disgust- no surprises there as it tastes disgusting. He has to have it every 6-8 hours otherwise he vomits. Have no idea when and if that Will ever stop. He also takes antibiotics every weekend for at least another 3 months and they don't taste too flash either. But we figure, food first then work on the medications. Hopefully if we get a win in both areas that tube will be out soon.

My niece noticed little eyelashes appearing around his eyes the other day which I'm very excited about as he only has one of the old ones left. Hopefully his hair will come soon too. Really hope I get to see all that happen. So worried he will be Sick again before I get all that and everything else I wish for. Oh my god, even when I think about some positives in the day the negatives just creep back into my thoughts. I just can't get away for it. No matter how hard I try to stay focused on the now I begin to feel terrified of the future. I am so very scared of that and I do try to not think about it. But that's just truly an impossible task. My mind just won't let it go. I watch him in the day, play with him, cuddle him and get moments of sheer pleasure being with him then within seconds they are clouded by frightening thoughts of the future. I shake them off as best I can but they are always there. I've never been so terrified in all my life as I am of losing my son. It frightens me beyond words and I'm spending everyday knowing that it is a very very real possibility. It just sux. I have no idea how to live like this.

I spent some of today sourcing places to get support from in the way of a parent group. I was hoping to find somewhere that provides support for parents of children with cancer where i could meet like minded people in a setting with councilling or something? Workshops or something like that? I know the cancer support group in cottesloe has workshops for carers there but not for parents of children with cancer. At least, that's my understanding. I'm saddened i didn't find anything as i really feel that would help but there doesn't seem to be a place in Perth that provides that however maybe I just haven't been looking in the right places.

I'm really tired now and finding it difficult to write so I think it's my cue to go to bed. He's asleep now, everyone is. Except me. I'm looking forward to snuggling back up to him. hoping I will sleep tonight.



- Posted using BlogPress from my iPadl

Wednesday, 24 October 2012

hospital visit

Jayden was back in hospital today as he had to get he dressing on his broviac changed. He has to have this done weekly until its removed and as yet we don't know when that will be. They said it should be within the month but I wish it were sooner because while its in there, there is always risk of infection. Apparently though they have to have the same surgeon that put it in take it out so its just a matter of time waiting till that surgeon is available. In the mean time Jayden has to endure a dressing change every week but after everything he has been through I know he can get through that, just as he did today.

He was very chipper when he was in hospital today which surprised us, its as if he knew. Very weird. Happy to follow the nurse into the treatment room and play with the toys. Obviously not happy to have his dressing change and hopefully there wont be too many more to come. But generally happy to be in there. I'm sure children have a sixth sense that we as adults no longer have and he knew nothing really bad was coming.

It was weird for me, being in there and in some ways I felt like a naughty school girl who hasn't completed  her maths homework. I felt as if I was being frowned upon by others however I'm sure it was all in my head.  I think I worry about being judged and I know I shouldn't but its hard not to feel that way. Maybe its just that I'm still struggling with the decision but I think I'm only struggling with it because its not the norm and generally I do the norm like most of us. I don't know but it often keeps me awake at night, tossing and turning, worrying. I think however, no matter what we decided I would be tossing and turning at night, worrying, did we do the right thing? When I think about going back now, I still cant bring myself to do it to him. It would be different if they said to us there's a good chance this is the answer, but they cant.  I don't know if i will ever sleep at night but I hope one day I get some peace from all this worry. I miss just enjoying resting and a good night sleep.

Danny on the other hand is clear as a button about it all and couldn't be happier we decided not too, he has absolutely no regrets whats so ever and if anything wishes he hadn't done number two. I wish I could be as clear as him but in the end I have to remind myself that really we had no choice, as we just couldn't do it. No matter how hard we thought about it, we no longer had the strength.

I think I'm worried more than anything because there's nothing else to do now but wait. I wish I could be actively doing something to help prevent it coming back , medicines, anything. But besides good healthy eating and the obvious other things there doesn't seem to be anything.

I sent a letter to Dr Goldman asking him that very question and I received one back from him today. I want to share it on my blog tonight because I just thought it was beautiful and everyone should know what a wonderful man this man is, I really love him . Hes truly the best Doctor I have ever come across and one of the nicest men I have ever met. This is what he wrote.....
 
Dear Leisl,
 
First and foremost, please know in your hearts that
Jayden could never ask for a more loving and caring 
set of parents. No matter what these days bring I 
feel 100% secure in that,  the decisions you made 
were with love and respect for your son.
About the helpless feeling, there is a well, 
known phenomena called "closing the umbrella" 
some estimate up to 50% or more of families feel 
this way. The best way I can describe this is the 
scenario, when I meet a family and they tell me 
how on the last day of chemo they are  going to have 
the world's biggest party, yet when that day comes 
they feel scared and sad. You see as much as we all 
hate  and despise the therapy our loved ones go 
through there is a sense of security that you are 
doing something and when a treatment regimen ends 
the fear of watching and waiting can be overwhelming. 
It would not be wrong to seek out alternative 
therapies like nutritional supplements , antioxidants, 
shark cartilage etc. etc. but none have any 
proven efficacy and would require him to take 
meds something we both know he does not like. 
I would enjoy his healing and watch him flourish.
 
Stew
 

Monday, 22 October 2012

Sisters

I took jayden over to see my sister today. For all the baggage we carried towards each other in the past its definitely no longer there now. It's amazing what cancer can do to your relationships. In my case it has brought me closer to the ones I love and mended torn relationships. A diagnoses of cancer puts your life instantly in perspective and the people who truly love you stand out like beacons. My sister was there for me almost every night at the hospital when jayden was first diagnosed and her twin came down to help look after our kids. I love them both dearly and even more so now. They have continued to be a pillar of strength for me and my kids and i will be eternally grateful that i have them in my life.

Growing up I didn't have much to do with them and mainly because of the six year age gap (they are older, although will tell you different) and also because they re twins and so they always had each other. I never thought about it much as a child but as I got older I missed not having a sister bond with either of them. Later, having kids we managed to get a little closer but often the stuff we carry around from the past would get in the way of that bond ever becoming the one i had hoped for. I always wanted to be close to them but always felt like i was on the outer. They couldn't have proved me more wrong when Jayden became ill. They were both there at the hospital and remained supportive and there for me ever since.

I now feel a closeness to them both that i never knew was there but probably always was. They are both truly very special people, fabulous mums and true inspirations to me. I have always admired them and looked up to them in awe growing up. I remember as a little girl watching them apply their makeup and get ready to go out and wished that I would grow up to be just like them. Im sure they thought i was a pain in the arse back then and absolutely hated sharing a room with me but i loved being in their presence no matter how annoying they thought i was.

The relationship I have with them now is even more special than before in that I have a very deep love for them both and an awareness of how special they are in my life. I could not imagine doing this without them and wouldn't want to. Without my mum it's hard, and I often wonder what advice she would have given me if she were alive. But I only have to be with my sisters to know she is still very much alive in each and every one of us girls.

I watched my sister today and I saw my mum so clearly in her. The way she played with Jayden and talked to him, made him laugh, and was just really gorgeous to him. He loves her and whenever I tell him we are visiting her he can't get out of the house and into the car quick enough.

She is truly one of the most beautiful people I know and I can't believe there was a time in our lives we didn't really get on. She's a great person, a loving person and would do absolutely anything for me if I needed her too. I know that now. My life has such a clear perspective now. I see things as I always should have and I value what is truly important. She's important, my other sister is important and so is all my family.

I have always loved my family and felt blessed knowing I was loved back. I hope that my kids will always have a clear perspective on what's important in their lives too and if that's the only one thing I can get across to them in their lives then i will feel like i achieved my job as a parent.


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cant sleep again...

Its midnight and I cant sleep. i went to bed early and fell asleep OK but have woken and cant get myself back to  sleep. I just keep thinking about everything and it makes it virtually impossible to get back to sleep. I thought if I got up and blogged and put it all down I could sleep. but I'm not sure sitting in front of a computer screen is the best remedy for sleep.

I don't know what woke me but once I'm awake I always find it difficult to sleep again. I laid there for a while listening to the boys snoring and watched my little man peacefully asleep, but that just pains me deeply. seeing him there so innocent and unawares.  I'm sure that's probably a good thing that he doesn't understand and I certainly worry enough for all of us but I so wish he really did have nothing to worry about.

He had a very itchy bottom today when he woke from a nap and I'm suspecting he has worms, of all things. I spoke to the doctor about that and he agreed so we wormed him and the rest of the family tonight. I couldn't help but think why cant that be the only thing that's wrong with him? why cant he just be a normal two year old and have worms? Honestly this whole thing just frustrates me so much as to how damn unfair it all is.

I had a moment to talk to my daughter today which was nice. she came for a drive with Jayden and I as he desperately needed to sleep and wouldn't at home so we went for a drive and within five minutes he was asleep. It was nice as it gave Layla and I time to chat. We talked about a lot of things and of course Jayden was mentioned. See said she rarely thinks about Jayden dying and that sometimes she just thinks of him as a normal two year old until she sees his NG tube which then reminds her hes not. She said she thinks about her guinea pigs dying (and that's because she has had a few die) but she doesn't think about Jayden dying. I'm so glad about that as I would hate to think its on her mind as well. I told her how frustrated I feel sometimes about how unfortunate our family has been and she said; "mum, it could always be worse you know", and I said "yes, I'm sure it could, but that's difficult to see sometimes". and she said "we could be a family that lives in one of those countries that war is going on and all of us kids could be affected, not just one". She is right. Shes scarily right, and sometimes I do wonder where that old sole comes from within her. I wish by thinking like that it would somehow alleviate some of the pain and heartache but no matter how much I know things could be worse it still hurts as to how things actually are.

Jaydens nanna came to visit today which was really wonderful as he loves to see her, all the kids do and it gave me a chance to pop out and do something for myself. Jayden has become so clingy that I really cant do anything without him being attached to my hip. I have to say I don't mind a bit though but sometimes there are things I just cant do with him. Hes also become really needy of staying in the home. whenever we go out now to the park or to the neighbours is not long before he says "home now mummy". Its as if he suddenly has a wave of feeling very unwell and wants to lie down but he doesn't lie down when we go home he just hangs with me and mostly on my hip. He wants to be carried every where and just isn't himself. Its making me really suspicious as to whats going  on. I don't know the specifics with Chemotherapy and how long it takes for them to bounce back after its finished but it just seems like hes not improving. there are moments in the day where he seems himself but they are fleeting and the rest of the time he just wants to sit and watch TV or as I said, sit on my hip. I'm still not completely convinced his lung is OK and am very keen to speak to the doctor about that but I know without an xray we wont know for sure.

Its so nice to have him home though and just having him with me when I'm cooking, doing the washing and just everyday stuff is truly magic. He loves to help me or just sit and watch and chat to me and I so love having him there with me. He constantly makes me smile with his little things he says and games he plays and I just couldn't possibly love him anymore than I do. When we went to bed tonight he asked me about love. I said to him as we laid down to sleep that I love him so much and for the first time he questioned what it meant. He said "love Luke?" and I said 'yes' then he said" love Layla?" and I said 'yes', then "love dad?" and again I said 'yes'. then he thought for a moment then said "love that?" and pointed to the ceiling and I said 'no' and he then, "love light", referring to the light on the ceiling and I said 'no' and then he thought again and looked at me and said "love you mum". It was the first time he has said I love you mum! Oh my god how nice it was to hear those words come out of his mouth. hes so clever and just so damn scrumptious!

I held his hand as he slept tonight and its so hard not to cry. During the day I can manage to hold back the tears because hes with me on my hip and I'm cuddling him and busy doing stuff. But at night hes sleeping and I have nothing to keep me from thinking about what he has been through and what could lie ahead. I know I should take the advice from my daughter and not look into the future but at night when I'm on my own and there is nothing to distract my mind ,I think. Its impossible not too. its what keeps me awake at night and what enters my dreams when I sleep. Hes my little boy and I m petrified of losing him. I know he would make such a special man. i know there are big things out there for him. i know if he got to grow old he would be a fabulous person and a good husband and father. I know this because he is a beautiful loving child and i wish he could have the chance to be that man. That man that would tower over me one day and give me a big hug, come visit me with his children and make me so proud. I love him so much and want that for him so badly and there is nothing I can do to make sure that happens, nothing. I hate that. I hate that I cant fix it, change it, make it better. All I have is hope. One small word that means so much to me right now. Hope.
I have nothing else, no bag of tricks, no magic wand and I feel utterly useless. Just waiting and hoping.
I don't know how I'm meant to do this. How I'm meant to get through this.

I know I need to start by trying to get back to sleep. Its now late and even though I'm truly awake now, I know i need to have sleep to get me through tomorrow. One day at a time. and no day is easy.  

Sunday, 21 October 2012

Farmstay

Im sitting with my boys watching a DVD that I am sure that have seen a hundred times before. It's Sunday afternoon and I'm very aware that had we gone through round three it would be beginning right now. Every now and then I get a ping of regret and uncertainty and I'm sure I always will but then I remember the words Doctor Goldman said before we made this decision. He said; " if you decide to only do two you can never regret that decision as no doctor can tell you three is better, we just don't have the evidence or knowledge yet, you make the decision based on your family as there are no facts to base the decision on ". So god forbid this tumor comes back I will never look back thinking its because we didn't do round three but rather it's a very shit cancer and no amounts of mega chemotherapy was going to stop it.
I bloody hate living with this constant time bomb though. Waiting, wondering if and when it will come back? Will it be the next MRI the one after or the one after that. Will he make it to Christmas? So many unknowns and I'm so very scared. Scared for him, scared for what he will endure should it come back. Scared that he will miss so much of his life and spend his last days suffering. This whole scenario sucks so much and every where Around me peoples lives just go on but ours is forever on hold. People celebrating birthdays, new babies, weddings, engagements, housewarmings and I find it hard to even get through the day. Some days I'm just plain angry that this has happened to our family and other days I'm so damn sad. Today I'm a little cranky and a lot sad. I'm sure it's made more significant being the day involved but just, I don't know, it's just all crap.

We went away yesterday, just for the night to a farm stay near my dads farm. We were going to stay at his farm but then decided it would be better for us to be on our own and visit him instead. It was nice to get away, away from everything tHat reminds us of the situation, well at least as much as possible. When we got there it was so nice just to sit and watch the kids play, feed the animals later and just all be together. All three kids got on great, it was really nice and a reminder we have to do this more often.

My dad and his partner joined us in the afternoon while the kids fed the animals. Its always so nice to see him. I love my dad he's a beautiful kind, gentle man. He's always been there for me. He has a huge heart and is a big softy. That afternoon I was reminded how special he is and how much he loves. He stood with me at the gate where we were watching Layla feed the sheep, horse and cows and I had jayden on my hip. Not much was said, we just stood next to each other watching, we briefly talked about how much Layla has such a way with animals but mainly just enjoyed being near each other. Jayden was getting really tired and asked to go back to our chalet. I asked dad to walk back with me and he did. Before we moved he reached out his arms to jayden and asked him if he wanted him to carry him. Jayden went to him, no questions asked, and snuggled into his shoulder. Jayden hasn't let anyone else carry him as of late not even danny and that's one of the reasons I'm worried he's not well. But dad, he just went to him, like he really wanted too, needed to. My dad is the best cuddler in the world and he held on to jayden like it was the last time he would hold him, I sure hope that won't be the case.
We walked down the driveway of the farm towards our chalet, just like that, jayden in dads arms with his little eyes peering over dads shoulders and me looking on. I could see in dads eyes the pain of all this mess and I wanted to cry. He asked me how I was managing and I told him, best I can. We kept walking and half way down he stopped as jayden was getting heavy and he was struggling to carry him. I said I could take him but he insisted he carry him all the way. He didn't want to let him go. It was so beautiful. My dad loves him so much and nothing was going to make him let him go. We got to the chalet and he gently put jayden down inside and collapsed on the closest chair. He was buggared. Jayden walked off to grab his Lego cars and brought them back to dad and began playing with them at his feet.
He just loves being near my dad jayden does and I'm sure it's because he knows how much he loves him and he loves dad.

It's evening now and the boys are waiting for their books and bed. Not a day will go by where I don't wish for my little boy to be the well boy he once was and not a day goes by where my heart does not ache for just that.

I can only hope that sleep comes tonight for me and I always remember and cherish every moment I have with my little man and my other two kids. For every moment I have with them is a true blessing and a gift....



- Posted using BlogPress from my iPad

Friday, 19 October 2012

Jayden woke a little happier today but still not himself. im worried about his 
little body and whats actually going on. we are due back in hospital monday but 
im thinking i might get him checked out earlier. 

He threw up this morning and most of it was phlegm.  I wonder if we will ever 
see the day when he will actually stop vomiting. I hope for his sake we will. 
 
He had his 'gumpy' over to visit today and was so happy to see him. Gumpy of 
course was equally if not more so happy to see Jayden. He's so beautiful with 
him and so happy around him I get the feeling that's half the reason Jayden loves 
being with him so much.
He would have to sense others sad around him, including myself. Even when I'm 
smiling at him, he would know. Not a moment goes by where I don't think of his 
condition and that one day I may lose him forever, im sure he feels that sadness 
no matter how hard i try to hide it.. 
 
He fell asleep in the car again today but today I was able to move him without 
waking him. I carried him inside and laid him down in my bed and snugged next to him. 
He snuggled right into me and we laid there together, him asleep and me thinking. 
once apon a time i would have got up once i realised he was in a deep sleep and got 
about the house hold chores. now i lay there soaking up every second of being with 
my little man. i laid there watching the trees out side the window blowing and 
listening to the sound of him breathing. we are all so much in a hurry these days 
that we forget to stop and cherish every little moment. they grow up so fast but 
in Jayden's case may not at all. I'm going to make sure i don't miss a second of 
it and be by his side for all of it. 
 
It's evening time and we are all sitting together watching a bit of TV. It doesn't 
get better than this. I love having Jayden at home and I love having us all together. 
 
Jayden and Luke are having fun in their new matching pjs they were given yesterday. 
Jayden couldn't be happier- wearing the same clothes as Luke. A beautiful person 
dropped them off at the kids school yesterday and the kids were so happy. They are a
little bit big but the boys insisted on wearing them anyway, very funny.
 
I can't help but look at him in his big pyjamas and hope with all my might I see him
grow into them. I hope i get to see his hair grow back, his eyelashes, his big smile
on his face for all of the day. i hope i get to see his chest bare again, with no 
broviac hanging out and lumens to tuck into a net he has to wear around his bellie. 
i hope i get to see him run, ride a scooter, a bike, wear a school uniform. i know 
he does. everyday the kids leave for school he cries to go with them. i hope we get 
to see him do just that. 
 
Everyday we get with him i know is a blessing but I so want a lifetime and I will 
never stop wishing for that.
 

Thursday, 18 October 2012

Hearing aids


Jayden got his hearing aids today! Little blue ones, one in each ear. He was so brave about it and never complained once.
We arrived there late as we got our appointment times mixed up but they were happy enough to see us anyway. When we sat in the ladies office Jayden was getting restless and he knew something was going to happen. When she put the first one in we had to hold him so he didn't push her away but when he realized it wasn't something that was going to hurt him he was fine with her putting the other one in. He sat there quietly once they were inserted and didn't say much. He just wanted to get back in the pram and go home. All the way to the car he said nothing, just sat in his pram quietly. But by the time we got to the car he was chatting again.
He's still not himself however and that's even before the hearing aid appointment. He woke up unhappy and has just not been himself. He seems exhausted all the time. Although I'm not surprised given the last couple of months in fact six months. I can't wait to see him sprightly again and back to his normal self. I so hope we get to see that.
He's taking a bath at the moment and we still have to have the water not deep as his broviac lumens can't get wet. nick told us his broviac will be out within the month. Wish it were tomorrow.
He's been really constipated lately and today was the worst as he screamed whenever he had a motion. So we gave him some Miralax and that seems to have sorted it for now. Hate seeing him in pain for any reason, he's had his lifetime full of that already.
We are hoping to plan some sort of holiday soon to getaway for a few days and not think of anything cancer. Just what we need, hopefully it will be soon.

Wednesday, 17 October 2012

We are done

I'm not sure exactly where to begin today but I can only start from my first thought and that is of the councilling session I had today by a lovely man in Cottesloe. He asked me what I hoped to expect to get from seeing him today and I said I hoped for some clarity in my mind about the decisions we are faced with. In the first half hour I felt a little disappointed as it didn't look like I was going to get that and then we started talking about my fears of the future and my fear of jayden dying. He explained to me that if I could find some place of peace within myself in that happening I may find clarity. When I thought about it i realized he was right. That's not to say he will die tomorrow or the next but an acceptance and peace within myself of that indeed happening gave me a sense of clarity. I believe if I find that then not only is this decision so much clearer but then maybe i will be able to truly enjoy him and be with him in every sense and way possible.
I asked him how do I do that and he told me he can help me and gave me a job to write a list of what that all meant to me.

Danny and I were due back in hospital today to start a whole bunch of tests to get jayden ready for round three. As I sat there in the waiting room I felt numb. Exhausted and a very great sense that I needed to cry.
We went through the motions of the obs which Jayden was happy to do, the dressing change of his broviac that he screamed all the way through and the bloods taken from his lumens. They then gave us the forms to go get the snot test and his X-ray of his lungs.

As we walked out the door we both decided no way were we putting him through another snot test. Upon deciding that we went to do the X-ray. They called us in not long after we arrived, and as soon as we walked in jayden became upset, he's been here before and it wasn't fun. The nurses wanted us to sit him in a chair so that his back was resting on the back so they could X-ray his chest. He screamed his head off, cried for us to stop it and fought like mad. Danny and I looked At each other after trying several times to put him on the chair and our faces said it all. Danny said ' we don't have to do this' and I knew what he meant. Neither of us have the emotional energy or strength to do this anymore. I knew at that point we were done. As hard as it was to accept, this is it. No more. I struggle with it still but I know that neither of us or jayden were up for round three. I'm sad, I can only hope now that I find that inner peace and enjoy my little boy every second of the rest of his life.



- Posted using BlogPress from my iPad

Monday, 15 October 2012

Major headache

I saw a doctor today for myself because I have a headache that just won't go away. Whether its stress related or not I don't know but am guessing it probably is. My inability to breath lately and the feeling of being in a panic attack 24 seven is truly a nightmare as well and thought it best I finally see someone. He got me to do a bunch of blood tests, finger prick test and the usual obs and all I could think about was Jayden. All the times he's been finger pricked, bloods taken, obs etc. it's insane to take it all in really, how very much he has been through. I hate it. I was so sad by the time I left the surgery and had a big cry on the way home. I feel so damn exhausted most of the time.

Jayden however has had a great day today and over the past few days he has slowly been eating small bits of food. Today for the first day he ate more than just Weeney mouthfuls. Amazing. A few bites of a banana, half glass of milk, and even a minuscule bite of a muffin I made( looked like a mouse bit it) but still, it was a bite all the same.
I had a check list I wanted him to have completed before we even considered doing round three and he had not even come close to checking any of the boxes until today. He woke up sprightly, has been playing happily with the kids all day and eaten. No sign of any lung problem anymore ( although I'd like to see an X-ray first). He's eaten food-amazing! And he looks the best he has looked in ages. Of course that's not my check list but if I judged him by his appearance and manner today, he looks well and could well check those boxes. Then I thought, maybe I need a new check list?

I have to say I switch from one day to the next, in fact one moment to the next. My biggest struggle is living with what decision we make which although we feel we have made it I still want to feel 100%. Although I'm beginning to think that may never be possible.
Nick rang today after I emailed him to talk to him and I think I had the best discussion with him that I have ever had. He was really understanding and compassionate and probably made the whole thing even more confusing but for the first time, I felt really heard.
I'm rambling now I know, it's late, I'm tired. And I'm trying to get the days events out in some kind of order and make some kind of sense even though my head does not feel that way at all.
I sat out the front with my daughter today and we spoke about the decision. She said to me, " mum, you just need to focus on making the decision, stop looking into the future and worrying about that. Make the decision, and never look into the future". That's my 10 year old daughter? Where did my little girl go? I couldn't believe those words came out of her mouth, she is truly Amazing, i love her to bits. She has been so amazing through this whole journey and she didn't have to be, she just is. And She is right I know. She also doesn't want us to do it because she hates us not being at home. We all do.

I can't help but think will this round give him a better chance? No one knows that of course. And should we get him to fight it as far as he can? My gut says no because I'm his mum and don't want him in anymore pain especially if no one knows it's worth it. I spoke to a dear friend of mine today who is also fighting cancer and has done for a while and she said " you forget about the pain, and I would keep going no matter what if it means I can spend more time with my family". I sat there and thought, " I wonder if that's what jayden would say if he could? Because at the end of the day, some of us are fighters and some of us aren't. She is. Is he? Would he want to fight no matter what to get the possibility of more time? Can he? Does his wee little body want to? Will it in fact give him more time? I wish I knew.

I don't know. I don't know the answers, none of them and no one can tell me. One day I think i know what to do, the next day I'm not sure. Im so tired. I wish I had a crystal ball.
I need to sleep, give my little man a big squeeze. I want to hold him forever and never, ever let him go. I wish I knew how to make that possible.






Saturday, 13 October 2012

Sunday thinking

I just woke from a nightmare that Jayden fell in a body of water that was so murky i couldn't find him. Awful. How our minds work to interpret things at night in dreams.
My little mans lying next to me now snoring along with danny and Luke. We picked the kids up from Danny's parents yesterday and its so nice to have them all home again under the same roof.

Yesterday morning when we woke and the kids weren't there it was very quiet. Jayden woke up really unwell, shaking and lots of phlegm in the back of his throat. He was looking weak and seriously ill. He did a huge vomit and it was full of phlegm. We were really worried. We both knew it was something to do with his lungs. If we were to decide at thAt moment about the third round then it was a no brainer-no way were we going to do it he's telling us he can't do anymore and that should be enough for us.
And it should. But I'm still so scared I'm making a wrong decision. I think in some ways it's that life long conditioning that doctors are right and are the specialist, but are they always? I know if we had of left it up to them they would have done a lot of things different and we are so grateful we decided to do otherwise but with this decision I'm just still hesitant. My gut says no and that's cause I know we don't have the ability to watch our son tortured again and Jayden most definitely would say no if he had a voice. I just want to feel absolutely certain and never look back with regret. Although I think no matter what we decide we will have a certain amount of regret. Deep down I know my decision and danny knows his. It's just doing it and living with it that is the most difficult part.

I could never have imagined in my wildest dreams that my life would involve such a huge decision. And the other day I wondered why I was feeling so ill and had a headache that lasted two days and is still lingering around today. The enormity of this decision and this entire situation is beyond words.

Fortunately as the day progressed yesterday Jayden slowly felt better. He still wanted me to carry him a lot of the time but he seemed happier especially when we arrived at Nannas to pick up Layla and Luke.

It's morning now and I'm sitting out the front of my house. Jayden woke up much more happier today and certainly seemed better in himself than yesterday. No doubt it helped that his brother was laying next to him when he woke. He has spent the entire morning following him around and not letting him out of his sight for a second. And to Luke's credit he's been marvellous with him. For all the times Luke plays up and his behaviour at times can be shocking there is no doubt he loves his little brother and cares for him deeply. He was so happy to see him when we picked them up from their Nannas yesterday and it was beautiful to see him fuss over him like an old man.

It's a cloudy day today but not too cold. The wind is blowing and my head feels like a heavy weight on my shoulders. Essentially it is of course but right now I can really feel it. It hasn't stopped thumping for days. The stress in unbelievable.

This morning we were visited by a beautiful couple we met on ward 5a in the beginning of this nightmare. they were entering their own nightmare at the same time with their beautiful child. they too have had to make the same difficult decisions we are making now. Its always truly comforting to be amongst people who understand this dreadful scenario and are managing the best they can. It was inspiring to say the least to talk to them and know such bravery and love for their child. I believe they will be people we have in ours lives forever. During this whole journey the advice of doctors has been important but the advice from parents walking our same shoes be it in person or via messages has been invaluable and of which I value and listen to most. They 'get it' and that's worth more than any medical degree to me right now.

It's afternoon now and we are on our way to a wildlife park. From now on in I want to spend every moment of Jayden's life discovering things, seeing new things and experiencing everything we can possibly allow him to experience. We may not know how much longer he will be with us but we do know we are going to try to make it the best time possible.


Friday, 12 October 2012

The last couple of days and MRI

I haven't written in here for a while because to be honest I have just been too damn tired. It's morning though now and I had a better night sleep. My little man is sitting next to me and we are watching cartoons on the tv. He had a big day yesterday and he's missing his Auntie Linda. She left a couple of mornings ago and he's been asking after her ever since. Wish she could move in with us permanently.

He just vomited after a glass of milk. Since he got back last night after his MRI he hasn't been the best. He had a huge vomit when we got home and we kept him off his feed last night and now a big one this morning. He has a low grade temp at the moment which was expected according to the doctor we spoke to last night. This is because one of his lungs collapsed during anesthesia. It's still like that but apparently should rectify itself with time. Not sure about that doctor as he talked it down a bit and I guess in the big scheme of things it's the least of our worries but still a collapsed lung sounds serious enough to me. We are assuming that's why he is pretty miserable this morning and not up for much at all, poor little mite.

Yesterday was a big day for him and he was not in the least bit happy to be back in hospital. There is no doubt children have a sixth sense for things and he knew from the moment he arrived that something was going to happen and he wasn't going to like it. Fortunately it wasn't chemo and anything compared to that is a bonus. When we arrived we played in the waiting room for a short while before the nurse called us in to do a set of obs on him and then after that we waited on his bed for the MRI people to call us up. He was also put on a drip for hydration as he had been fasting for so long.

By 3:00pm we were called up to MRI and remained in the waiting room up there till 3:30. In that time we met with the guy who was to do the MRI followed by the anesthetist- really lovely lady. Only one of us can go with him in there and he wasn't letting go of me nor i him, so we went in together. Inside were three other nurses and the anesthetist waiting for us around a bed. Jayden knew instantly something was up and clinged on to me for dear life. I held him tightly in my arms as the anesthetist pushed the white substance in his lines. As soon as he felt it hit he cried and Tried so hard to fight it off. Seconds later he was asleep and I laid him down on The bed with the help of the nurses. His little face so innocent. How His life has come to This i will never know or understand and it will forever break my heart.

I walked out after a last kiss goodbye and left him with the nurses. A huge trust is involved with them and the very big hope that they will do the right thing by my son.

Danny was waiting outside and embraced me in a big hug- just what i needed. It doesn't get any easier, none of it. We then headed back to the ward for the agonizing wait to see him again and to hear the results.

An hour and a half later the nurses came to get us and we went up to see him in recovery. He was still asleep and looked peaceful. Because he had an LP in his spine he had to lay flat for at least an hour so fortunately he was still asleep and had been for twenty minutes so only forty minutes to go. The nurse and another guy ( cant remember his title) wheeled the bed with him on it back to ward 3b with us closely behind.
When we arrived back to our room They wanted us to lift him off and put him on his bed but fortunately after I pleaded with them that we don't wake him so he remains flat they were ok and left the bed with him on it in the room.

Not long after that the doctor came in with the results for the MRI. He told us that they seemed fine but we would have to wait for the official report. So that was comforting. He then told us that one of jaydens lungs had collapsed but should rectify itself with time?? I have to say that concerned me a lot then and since then, as jayden has not been his usual happy self and has needed me to carry him most of the day today.

The same doctor talked to us about round three and was very pushy if not somewhat aggressive in his approach. He told us we could live to regret our decision, that doctors all over the world are saying you need three rounds and basically made us feel even worse than before. Thankfully a beautiful nurse whom we have known for ages here and who sat in on our conversation with nick told us that our concerns were real and valid and that she has seen in the past the kind of serious side effects that can occur during this treatment and fully understands our reluctancy. She told us to trust our gut instinct and go with that.
I have to say I'm still confused but together danny and I have decided to draw up a list to help us decide. Neither of us want jayden to go into round three in bad shape so unless his liver, lungs and overall health is in tip top shape we are not going to risk his life, not when we don't even know how short or long that will be.

It's the evening now and getting ready for bed. Luke and Layla are at their Nannas for a sleepover and I miss them terribly, so does Jayden. I'm so looking forward to tomorrow when we are all together again.

Thursday, 11 October 2012

MRI results

Jayden had his MRI today and the result so far is good. We have to wait for the full report to come in but so far they are saying it all looks good. Yah, some good news finally.

I am so tired tho that its insane. I've never felt this tired in my life and it doesn't matter how early I go to bed.
I am laying next to my little man right now and he is so much more worn out than me but soldiers on like the little trouper he is. He's had a big afternoon and is sound asleep now.

I'm going to do the same.



- Posted using BlogPress from my iPhone

Monday, 8 October 2012

Stuck in the middle

After many calls last night to answering machines and emails back and forth I finally got hold of Dr Goldman this morning.
I had a long chat with him, it is always nice to hear his voice and what he has to say. Unfortunately though we are no nearer to a decision than we were before. I think I was just hoping Dr Goldman would have cleared it all up for me and told me which way to go. But he can't and I know that, but i will always wish for that miracle. It's very difficult as a parent that when you go to the people that are meant to have the answers and they don't, then where do you go from there? We have to make a decision on treatment for our child with no medical background at all, as we know the answer as well as the people who do have a medical background and that is, there is no right answer.
If we go back we risk his life again or hope that Nick is right and Jayden will more than likely be fine or we opt out now and say enough is enough????
What dr Goldman did say is that we could never regret our decision if we chose to do two because no doctor can tell us that three is better as no one knows. It would be entirely different if they said three would fix him and we said no. He's right but why then do I still feel so torn. A huge part of me does not want to go back but is that just because I can't stand to witness my son being so sick again or is it indeed my gut instinct that says he's had enough?
I don't know.
I want to be able to say this is it and stand firm and positive behind that decision and be fully confident it's the right one but I can't. The doctors can't and they're are meant to be the specialist so how can I? It's shit. I want so much for it to be over but I know it never truly will. I know no matter how hard I wish for it to be done, it won't be. There will never be an end to this. The treatment maybe, eventually but not the agonising pain of the thought of losing my son.
I cherish every moment I have with him, every smile he gives me and laugh I hear from his mouth for I know one day it may be his last.
I wish so much that I could fix it for him, that's my job. And I wish so much I knew the answers to the questions I want so desperately answered. But there is none.
I'm stuck in the middle and wish that some defining moment or information could be placed in front of me to tell me which way to go, I want to be making the right decision for my son as its his life we are talking about but I don't know what it is.
He gets his MRI on Thursday and that will let us know if any tumour has grown back. I'm hoping with all my might that it hasn't but other than that there's nothing I can do. I only have hope and I so wish it were enough.


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Gfr test today

Back in hospital today bright and early as Jayden had his Gfr test booked. As soon as we arrived the nurse put on the Elma cream on all the spots on his arms and feet that showed a possible vein for a canular( no doubt wrong spelling) to be inserted. Last time we had one of these Jayden had a bad experience with the canular being inserted and he and i were both dreading it today.
The nurse took us through for his obs- blood pressure, temp, height and weight and then we went into the outpatients room and chose a bed. the one closest to the door we decided was the best. Not long after settling in the nurse came to take us to the treatment room where Jayden was to get his canular put in. He went nuts when he realised what was happening and fought as hard as he could to stop it. its truly gut wrenching to see him so upset and scared and not be able to do anything to stop it. fortunately This time we had a doctor who spent a good amount of time finding a vein then got it first time and did it quickly. I was so relieved as I most definitely do not have the energy for tolerating someone not getting it right again. I know that might seem unfair but at this point I just have nothing left.
After it was inserted and the nurse wrapped it up with a bandage We were sent upstairs to nuclear medicine where a purple coloured radioactive substance was inserted into the canular and hence into Jayden's veins. They also removed the canular afterwards as we no longer had any use for it. Jayden through all of this was really struggling i really think he's just had enough like us all. he didn't want to comply with anything even the simplest things and just wanted to come home. Who could blame him?
From there we left to go back to ward 3b to get blood taken from his Broviac every hour for four hours. On the way I stopped at the cafe with Jayden to get a coffee and a juice for him. While we sat waiting for my coffee a wonderful lady came up to me and introduced herself as someone we had met when we were up at ward 5A when we were first admitted in the beginning of the year. She was so kind and said some beautiful things to me and handed me a gift. i cried as i looked into her eyes for from them i could see someone who truly cares and so very genuine. thankyou to that beautiful woman. i wont forget your face or your kind eyes and appreciate your kind words and gift. she could not have approached me at a better time as i was feeling so lonely and crap. even though i cried when she spoke to me she made me feel better, in a small but very significant way.
Not long after she left another person whom I met on 5a sat at my table and I was so happy to see him. A beautiful man whom him and his wife we befriended in the beginning of this mess. We may have only known them for a short time but they feel like family. I was so happy when his wife came down and joined us as well and I haven't felt so understood in a while. We talked about all things relative to our situations and i was even able to have a good laugh that i haven't had in ages. God it was good. so good to see these people and i so desperately needed it. There truly is nothing more refreshing and absolutely crucial during this journey to be amongst people who get it. They don't necessarily have to have a child with the same condition or even a condition at all, they just have to "get it". And for most people they have to be living it but for some very special people I know they don't have to, they just "get it". This beautiful couple and their family are living an entirely different circumstance but they "get it" beyond words. One of the most beautiful couples I have ever met and I love them dearly. Shayne and Linda- you are truly special.
There is no doubt that one of the most amazing things that have come out of this extremely painful and difficult situation is all the beautiful people we have met on the way. I am so very grateful to each and everyone of them as I really don't know how we would have got this far without them.

We are now home, it's late, everyone's in bed. I'm sitting up waiting to make a call to speak with dr goldman. The time difference is a nuisance but I'm determined to catch him. I really need to heAr his voice and talk to him about Jayden and round three. We found out today nick has bought Jayden's MRI forward to this Thursday and we are hoping with all our might that everything is ok.

My sister is still here and expecting to leave to go back to her home on Wednesday. I'm really going to miss her and Jayden is too. I have had some much needed chats with her and she has truly been a wonderful support. I wish she wasn't leaving. It will be very quiet around here without her.

I'm sitting in front of my computer looking at my screensaver which is s picture of Jayden before all this mess began. Beautiful little boy that never did a thing to deserve such a rough ride in his life. I still can't believe this has happened to him. I watched him today with linda and he looks so different to me from the little healthy boy he was. No hair, pale skin, his eyelashes are now falling out as well and no doubt his eyebrows to follow. Yes, they will grow back but it makes no sense that the treatment he has to get to treat this nightmare cancer or any cancer for that matter does so much damage to such a little body in the process.

I'm tired. I want to sleep and I do hope it comes quickly. I'm going to try ringing again and hopefully get through this time so I can clear my head hopefully and get some sleep.

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Saturday, 6 October 2012

It's Sunday and my sister is still staying with us much to the delight of Jayden and the rest of us but today she spent the day with my other sister Yvette which was much needed no doubt for both of them.

im sitting in the car right now parked in a car park near the river with the engine running. Jayden is sitting in the back in his chair fast asleep. he wanted to go for a drive so we knew he wanted to sleep . i should be sleeping too as i have never felt so tired as i have done these last few weeks . i feel as though I'm running on empty and desperately need to refuel but i have no idea how. it doesn't matter how early i get to bed I'm still exhausted when i wake up. I have limited energy for my kids and even more limited patience. I've become this grumpy, unavailable mum and I hate it. I try to spend time with them but its hard. Jayden always wants me and to be apart from him can be tricky. I feel as if I'm slowly losing the connections I have with my other kids and I don't know how to get them back. It's so damn hard to live under these circumstances and it's impossible to explain to someone who isn't living it.
When I took off to take Jayden for a drive all I wanted to do was go somewhere, drive somewhere where I could take a breather. A time out from this shit of a life. But there's no where. No where I can take my son where he isn't living the life he's living. No where I can take him to make it all better. This truly sux.
I drove past where I use to live as a kid and tried to take myself back there in thought and remember when life was easy. I just wanted to go to a place, anywhere that allowed me to breath even if just for a few moments. But it's difficult to go somewhere in your mind when your mind is so filled with other stuff. I never knew back then before Jayden or my kids how easy life was nor did I know it possible to love another human being as much as I love my kids. I never knew back then that one day I would be a mum and suffer an indescribable pain so bad from witnessing my child so ill. I wish I knew how good it was back then and I wish for a moment in time I could have that feeling again. The feeling where I could breath again. I miss that. I miss not hurting and I miss the mother I once was. I feel like my kids are now only getting what's left of me, the bit that's still hanging in there. And I feel so sorry for them. Their childhood has become one of watching their brother fight for his life and their parents barely hanging in there to keep it all together.
I feel like they are fading into the distance and I'm desperately trying to hang on To them. i dont know how to fix it and i worry every day I'm missing out on them growing up because im so preoccupied with what is. i know i cant change the future or see into it. but that doesn't stop this incredible pain. I love my kids beyond words and that love has turned to pain within me as I can't be the mother to them that I want to be. It doesn't stop me trying but I feel like I haven't anything in reserve anymore. I truly thought that when Jayden's treatment stopped it would become easier. I can't believe what a fool I was to think that. Right now I'm feeling the most defeated I've felt in my life. I know I have to see someone to help me get through this and danny and I plAn to as soon as we get time. But we also know there's no quick solution to this. Nothing is going to make it right or us wake up and feel good again.
All I want to do is wrap all my kids up in my arms and take them away somewhere from all this shit and be able to laugh with them and play with them without a second thought of all this shit. For them to be kids and have life be and feel easy for them as it should be. Not watching their parents struggle or their brother suffer. That's not the childhood I want for any of my children for that is when life should be easy....

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Friday, 5 October 2012

Two smiles :)


I wake up in the morning to two big smiles. One on Luke and one on Jayden. Followed by two big cuddles, god i love them. That's what gets me up and gets me going. Jayden becomes even more happy when he realises my sister and her kids have stayed the night. He loves them big time and doesn't leave my sisters side from the moment he first sees her.
I had a good night sleep last night even though I went to sleep miserable. I know I'm always going to have those days and there seems to be more of them lately but today is a new day and my sister is here so my mind is distracted.
Jayden is so happy that I can't not smile. I'm watching him playing with linda and he's giggling away and its just priceless. It doesn't get better than that.
My brother and his kids are heading over and I'm looking forward to seeing them too. Family has become even more important than ever before and I'm so happy to have them around.
My sisters are especially a huge support and I've never loved them more than I do now. Linda is planning to move down from Geraldton to be closer and I'm so very greatful for that. Soon she will be only a short drive away and I know where I'll be visiting on a regular basis.
I do wish however that all the mums I now know through Facebook that also have children with ATRT lived closer. I wish I had one I could visit and have a good cry with. Someone I can truly get and be with knowing there is real understanding between us. I do miss that in my life but I know they are only a message away just would be nice if they lived closer.
Well I'm about to eat my breakfast and get on with the day. The mornings are my best part of the day it's the nights that are so difficult. I think I use up all my emotional reserves in the day, keeping up beat and happy for my kids and family that by the time the night comes and they are all asleep I fall to bits. That's my time to release those emotions so I can get up the next day and start again.
What a life hay? And sadly I'm not the only one living like this.....
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Meeting with nick

We went into hospital today to have our meeting with nick. Jayden was with us as we thought he needed to get his blood counts done but he didn't, but it was good to take him when he wasn't getting something done and no doubt he was happy about that.
Nick said exactly what we expected him to say and more, and left us feeling conflicted somewhat. I know I'm not sure what to do next but danny is still where he was when we first went in. I asked him what his main reasons were to not do another round and he said he didn't think Jayden was up for it and neither is our family. Nicks argument was he's done ok so far so why wouldn't you do another? Obviously a lot more was said than that but what danny said really stuck in my mind. Jayden has had enough and we have too. Our whole family is at the brink of emotional exhaustion from all of this and none of us are truly up for going back. It was hard enough to do round two let alone go in for three. But what continues to play in my mind is nick saying 'will you live to regret that decision should the tumour come back?' However he can't tell me it would be because We didn't do round three because no one knows that. But I can't help but think, would i? But then I think, is that just because I'm so scared of facing the future? That by being in hospital I don't have to look down that path for a while because i will feel as if I'm doing something now? Because right now I am so very scared of tomorrow and the next day and the day after that and the very real possibility that one of those days i will be holding my son for the very last time. I'm at that point now that I don't know what I am going to do to get through this. When we were doing treatment I was busy focused on a goal and that was to get to the end of it. Now I'm here and what next? Waiting? Everyday, wondering, watching, dreading, that it will return. The anxiety and sheer terror of it is so overwhelming that I don't know what I do next. How do I get through this? How do i go through each day?
I sat with my sister tonight and cried. I don't know what else to do and I know that right now that's all that I want to do. I spend all day holding it in but all day all I want to do is cry and cry and cry. I really don't know how I am meant to do this? How does a mother function on a day today basis knowing that one day this dreadful tumour may return and when it does there is nothing more that can be done as Nick told us today. He also reminded us that these tumours if they return, return quickly usually within six to twelve months. So every day from here on in i will be watching for every little sign and worrying senseless that i see one and that his tumour has come back. Its insane. i feel like I'm going crazy sometimes because these emotions are so intense i don't know what to do with them.
I'm truly at a loss. A loss for words powerful enough to truly explain how hard this is and a very real loss at what to do next.

Jayden is asleep next to me right now and looking so peaceful, my only solace in this awful scenario is that he doesn't know what lies ahead of him. He only knows what's in today and that he's comfortable in bed between us and happy sleeping. He's had a fabulous day playing with his auntie and cousins and life is good, as far as he sees it.

How i wish it was exactly how he sees it....


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Wednesday, 3 October 2012

An argument

I often wonder how my relationship manages to survive under such stressful circumstances and some days like today it's barely hanging in there. It's never really about how much the other one does or doesn't do or how much they annoy, irritate or drive u nuts but more about how enormously stressful and sad this situation is on a daily basis and the very real need to blame someone. Anyone. More often than not that person becomes your partner, the one you are most close to and whom is equally sharing your pain and stress.
I love my partner dearly but sometimes I hate him too, not often but usually when I'm at my wits end, I'm tired, scared and so very sad but i don't see it as those things and I wind up blaming him. it will come out in the most absurd situation and when he's not firing on all four cylinders either its game on and its not pretty. a long time spent yelling trying to put your point across and being right, when reAlly you don't know what your point really is just that your so damn mad and angry you need to take it out on somebody. The sheer exhaustion of the argument and time after to think leaves you more tattered than you were to begin with and wondering when will all this shit end??
You're are soon snapped out of it as you push your sons stroller through the city to go to an appointment to get his hearing checked and him fitted for hearing aids, we arrive at the doors, and the silence has broken. we know we need each other again and we are in this together and no argument is going to stop that.
There is no doubt in our minds however that we are truly struggling and that this is very very difficult. We hurt in different ways, express it differently and cope differently but we are the same. We are both Jayden's parents and we both live and breath this every second of everyday.
I wonder often how we manage it and today was probably a day we needed in order to remind us that we are only human and there is only so much we can tAke. That somehow we have to keep digging further in order to keep afloat and remember that no one is to blame.


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Monday, 1 October 2012

Day at hospital

We all headed into hospital early this morning for Jayden's bloods to be taken, Broviac dressing changed and his nasal gastric tube dressing changed. All of which he screamed through. He seems to be less tolerant of it all now and fights harder than ever before to stop the process happening and u can't help but get the feeling he's had enough as well. He's at his wits end with it too and is so over it all he just wants it to stop. We all do but no one more than him.

We are now at the park outside of the hospital waiting for the results of his bloods to come back. We can't leave until then as he may require a blood or platelet transfusion.

On our way out we ran into nick our oncologist. He was too busy to see us today but made an appointment for Friday. We already know what he's going to say as we are not keen on doing round three and he is. It's a terrible place to be as a parent. Not having any medical background what's so ever but having to mAke decisions that are what's best for your child with the knowledge you have. Jayden is on a trial protocol, which means exactly that, it's a trial. I asked nick before we started does that mean Jayden is a 'guinea pig' and he said yes. No one really knows how to cure this type of cancer and all thAt was available was this trial. Nick told us once that Jayden will be a pioneer for kids to come who have this disease, unfortunately that did not bring me any comfort what's so ever. So as we have gone along we have had to make many decisions relating to our child's treatment one of which was to not do the radiation they had to offer in Australia but to do proton beAm therapy elsewhere. best thing we ever did. We now have to decide if another mega therapy round will be worth it and right now we feel there is not enough Evidence or data to support this.

So we ask ourselves as parents, if there isn't enough evidence to support torturing your child for the third time with high dose chemotherapy, run the risk of damaging his vital organs even more so and risk serious infection or death, then should we? Would we?
We are finding it very hard to say yes to that. He's already lost a lot of his hearing because of these rounds and it is estimated he will lose more, what else will he potentially lose? No one can answer that or can they tell us it will make a difference because they actually don't know.

We are now leaving the hospital as the results came back good and he doesn't need any transfusions! Yah. So now we are going home.
Looking forward to getting home and far away from the hospital. Wish we could say we are never going back there again but we know different.

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A much needed visit from my sisters

I'm laying next to my beautiful little man at the moment and he couldn't be closer to me. He's so tightly snuggled up to me and even though its uncomfortable to sleep sometimes, I wouldn't have it any other way. I woke up this morning really sad. Nothing unusual really but today was particularly difficult. It doesn't help that sleep doesn't come easy for me or that his pump goes off In The night because he lays on his tube or that we have to give him medications in the night. But this morning was just hard.
I took my cup of tea outside to watch the kids play. Jayden trying desperately to keep up with his brother, Luke trying to keep Layla's interest and Layla just being Layla. I should have used this moment and others like it to bask in the enjoyment of just being with them but instead I thought of Jayden's illness and our new life. They soon dispersed and ended up going inside but I remained sitting there unable to budge. The sadness of my life covered me like a blanket and laid on me so heavy I couldn't move to get up. I didn't want to. I began to cry like I hadn't done in a while and remained sitting there allowing the tears to fall. My phone beeped several times with messages but I didn't read them. Nothing interested me at this point. I knew my sister was on her way over with her daughters to visit and I almost text her to cancel. I didn't want to see anyone. But I know my sister would have ignored that and come anyway so I didn't bother. It would have to be one of my yuckiest moments. A feeling of pain so deep, of complete exhaustion and defeat. The feeling that everything has finally got the better of me and I couldn't move on.

My sister soon arrived and with her was my other sister, her twin, whom is battling her own stuff. and they both gave me a big cuddle. I didn't think seeing them was going to make a jot of difference going by the way i was feeling, but it did. There is something so special about family and siblings that often there needs to be no words to truly understand what the other is feeling. we touched upon it briefly but i didn't need to expand. they knew, and they were there, and that meant a lot. They spent the whole morning playing with Jayden and making him laugh. He loves them both so much and squeals with delight when he sees them. He use to think they were one person until he saw them together and initially called them two Linda's. but now he knows one is Yvette and the other is linda, very funny. I remember Luke did the same thing when he was little. Yvette left just after lunch but linda remained for the rest of the day. She spent most of the time playing with Jayden while I caught up on some washing and putting clothes away and we chatted in between. It was so nice to hear him laughing and smiling, and it was oddly nice to do washing and housework. Having her company definitely helped me get through today.

She's gone now and we are all tucked up in bed. I'm still awake as always listening to the three men in my life snoring.

I'm thinking the same stuff I always think and consumed with the same worries, for life does not change here. I don't know how to escape the thoughts or overwhelming feeling of sadness. I don't know when it ever ends, if it does. All I know is its my life now and no one should have to live like this.