Friday, 31 August 2012

Sick guest!

I've just woken from an awful dream. One of those you want to make sure you truly wake up from before you go back to sleep in case you slip back into it. Bit like my life really. One big awful dream but more appropriately put, nightmare. Except I can't wake up from it.
My dream tonight was about the kids but I don't want to blog it as I want it erased from my thoughts forever. Awful dream. My grandfather use to always say if your having nightmares, chances are you're sleeping hot." Too many blankets" he'd say. My mum believed that as well and I have to say, so do I. Sure enough I do feel as if I'm a little on the warm side and should probably turn the heater down or remove some covers.

It's 1am and I should go straight back to sleep but I'm not going to. Not until my mind has truly steered away from that dream. It's really made me feel yuck and. Quite abit scared so will wait un till its well and truly shaken off.

It took me ages to get to sleep tonight so major bummer I've woken a few hours later but never mind, as I know, there are worse things in life.

Couldn't sleep when I first got to bed, stressing about an unexpected visitor we had today. My uncle. Beautiful man and I love him dearly but what he bought with him was a "nasty cold", in his words. I wish I had of just told him to leave right then but I truly didn't know how too, Without sounding incredibly rude. So he stayed for a while, coughed a lot, and I'm not sure I have ever been so stressed about germs as I was while he was here.

People who haven't experienced this life truly have no idea how serious bringing a germ into our house is, and that's a shame. I'm starting to think we may need to have to put a big sign on our door telling them so, at least that would save me from feeling rude.

So now both Danny and I are stressed about what the next couple of days will bring as to whether or not jayden has in fact got his "nasty cold". Honestly, I'm so angry with myself, I truly need to get some courage and just tell people to leave when that happens.
Going to try and sleep.

It's morning now and Jayden was up yet again at the wee early hours of the morning. Once upon a time that would have driven me nuts, now I'm just so damn grateful we are at home and getting up together, it's brilliant.

Fast forward and it's in the afternoon. Jaydens having a nap and I'm sitting watching a DVD with my son Luke, although not actively watching.

I need to take this time before I end this blog to thank two beautiful ladies who came to our house yesterday, they know who they are and what they did for us. We want to let them know and their beautiful colleagues how wonderful we think they all are and how much we appreciate how kind they have been to our family. So thankyou.
I wish I could thank every person individually for their generosity, help and kind messages and thoughts and I hope one day I get to do exactly that. For every one who has helped and continues to do so you are all truly wonderful and we appreciate it all from the bottom of our hearts.

- Posted using BlogPress from my iPhone

Thursday, 30 August 2012

At home, and my Dad

We spent the morning in hospital today but not for anything to be done or checked out with jayden, thankfully. We just had to collect jaydens food as the milk we bought home last night was the wrong type. So off into PMH again to change it. Had to wait an hour or so once the prescription was put in so we went for a walk around the nearby streets and stopped at a park for a quick play. It was really nice to be able to take jayden to hospital without having something done to him and no doubt he was chuffed about that as well.
He insists on walking everywhere now and it's difficult to talk him into getting into the pram which is great for him but tricky for us. Doing a lot more running after him now and that's always a worry when he has broviac lines and feeding tubes hanging. They are taped up but could always get caught on something so it's just that little bit more stressful.

We got the milk and were home a little after midday. The drive in and out now is such a 'normal' event for us now that we don't think much of it anymore. I never thought id be spending my days doing that, but here I am. And sadly we are 'locals' now in 3b and know many of the nurses well now. They have become like friends and jayden certainly has his favorites.

Things have still been tricky with everything associated with Jaydens condition but we have still managed to maintain some kind of new normal routine. I've now been able to get a few more things done around the house as jaydens feeds are not needed as often. we have managed to slowly build his feeds up so they are now hourly instead of half hourly. And because jayden isn't vomiting as much the washing has eased off a bit. He still does just not as often. He still doesn't eat anything, although he did have one chip a week ago and a mouthful of toast but nothing since. I still serve up his dinner every night always hopeful that one day he will dig in.

I know it's little steps and a week today he will be back where we started from if not further but I am forever hopeful that he will get strong for this round and be ok and with us at home again.
I spoke to dr Nick the other day and he told me the second round will unlikely be like the first as his body had already been beat down so hard by very very high doses of chemo. But I can always hope.

I try really hard not to think about what could be and when I manage to pull it off I have a not so bad day and even manage to laugh and have some quality time with my kids. It's always in the back of my head though and seeps through the guard I try to keep up, but I'm trying. I'm trying really hard to manage. I don't believe I will ever succeed in shutting it out but I'm trying.
Nor will i or the rest of my family be the same people we once were but we will somehow find a way to manage.

When I get through a day without falling in a heap i believe thats doing ok. if I keep myself busy and not left alone to think then that's coping too. Anything that requires me to be alone is a buggar.
When I write in here for instance it let's those emotions I am forever fighting back all day come out and it's all over for managing.

As I'm writing now I'm thinking about my dad. I don't often think about how jaydens situation is effecting him or Danny's parents or our siblings, as we are so in the thick of it you just don't realize others are hurting too. I sat down with him the other day and had a huge cry, cause he's great with that. He had alwAys been a brilliant shoulder to cry on. He said to me after I had my cry. " I don't often find it hard to talk to people about things but this leisl, I can't. This is too hard."
I really felt for him, he's such a beautiful man who loves his kids so much and it is truly killing him to see his grandson so sick and me so sad. I wondered to myself how on earth had he managed at all in his life. His dad died of cancer, then his sister whom was also his closest friend died of cancer, then a year later his wife (my mum) died of cancer, he had known her since he was 12. His mum passed away a few years back and now he's watching this new nightmare unfold. None of it he can control or stop and I know he would do anything if he could. He's a true treasure my dad and I love him dearly.
Life can throw you so many shit curve balls sometimes and you have to wonder why some people get more thrown at them than others. Why is that? Why has a beautiful man like my dad had to experience all that and still is, and why my family? Some would say its Gods doing, that he only dishes out the tricky stuff to the brave. But I certainly don't feel brave. Most days i feel like a fragile pansy, definitely not brave. And my dad, he's not brave either, he's a self proclaimed "sook" as he says. I don't understand it and I'm understanding it less as time goes by. Getting older hasn't made me wiser, just more confused. I didn't spend my youth imagining that when i grow up and be a mum my life would be like this. Im sure my dad didn't either for me or himself.
It got me thinking about the other day when I was driving home from hospital with Jayden asleep in the car and as usual on my own, thinking. My heart was aching and tears were welling in my eyes and i thought to myself how much i hope and pray that none of my kids will ever have to experience this excruciating pain of having a child with cancer. I hope and prayed so hard that they would never ever have to feel this pain ever in their lives. i truly could not bare to see them hurting this much. And heres my dad watching exactly that. I don't know how he does it or how he sleeps at night. He sees us every week and hangs out with us as much as is needed, he's always smiling , he's always keeping everything up beat as much as possible, plays with Jayden heaps and Jayden adores him. and he's always been and always will be a soft place to fall. And then I wondered, wheres his soft place to fall??

- Posted using BlogPress from my iPhone

Wednesday, 29 August 2012

Blood transfusion today

I'm laying awake at night once again along side my three most favorite men in the world. Luke to my right, jayden to my left and Danny squished at the end.
they are all snoring of course and I am still awake. Don't know what it is about these boys but they never seem to have any problems falling asleep, I want what their having.
I'm back on that darn rollercoaster of emotions and hit yet another low this morning, but I got myself out of the house and away from my thoughts and grabbed a cab to the hospital to be with Danny and Jayden.

Huge big smile and squeal of delight i got from Jayden when he saw me and instantly my mood was lifted. I love this little boy so much I just want to squeeze him in a big hug that would last a lifetime and never ever let him go.
He was just super happy and didn't stop chatting to me about his toys he was playing with and a whole lot of other stuff I'm yet to be able to interpret. I sat with him on the hospital floor, played cars and was just so very happy to be with him. No more staying at home by myself EVER again.

He got his bloods back today and they did a big dip down. I still feel new at all this stuff and didn't understand why they dropped so much when they had got so high. so i asked of course. Apparently the injection he has everyday that helps his counts come up stop once they reach a certain point. then everything drops back down but not as far as in the beginning and his cells are then left to come back up on their own. I'm sure it's far more technical than that but that's my interpretation.
So his red blood cells were really low and that meant he had to have a blood transfusion. He was so good about it all even after already getting yet another dressing change. It takes just over two hours and he sat happily playing on the bed for all that time. He just gets it and that amazes me. Never asks questions or argues, just accepts it and gets on with it.
I think he quite enjoys these quick visits because he's started to get to know all the nurses in outpatients and they talk and play with him and he loves the attention. One of the lovely ladies there played cars with him on the floor while I went to the toilet and she had him in fits of laughter. Geez it made me smile. When I hear his laugh it's just truly magic. There's no better sound for me. I want to hear it for the rest of my life. It's the one time I can breath. It's the one time that the heavy weight on my shoulders and heart is lifted.

It was another long day there but because I came in, danny was able to go home and get some work done.
He then returned later to pick us up just in time to come home for dinner which Danny cooked. Yah.

I've just taken some panadol to relieve a niggling headache which I'm sure is stress related and am going to hopefully be snoring like my wonderful sleep buddies soon. And I intend to go to sleep dreaming of his laughter.


Tuesday, 28 August 2012

Home alone

I'm alone in my home which would have to be a first since this whole nightmare began. I thought it was going to be a good thing and a chance to have a cuppa with a friend and when that fell through I thought a brilliant opportunity to clean my home. But all it did was left me alone with my thoughts. As I cleaned I thought, washed, thought, every toy I pick up or clothing I put away reminds me of what once was.
I took a jacket out of my cupboard to put on and held it in my hands thinking about when I bought it and telling a friend what a bargain my $15 jacket was. I remembered the moment standing in my kitchen with my mate I use to see often and admiring my piece of bargain hunting and laughing over a cuppa. I sighed for that life is no longer, and those simple conversations don't come easy anymore if at all. The last thing I want to do now is grab a bargain or talk about it.
I feel ive lost the connections with friends for i no longer know what to talk to them about. I now sit here alone writing in this blog and wish i was the one sitting in hospital with Jayden and not Danny. As at least when im there i can focus on what needs to be done, get it done and not think about anything else. There are others there I can chat with and not be reminded of what was and not feel so alone.

I'm sitting at the kitchen table and wonder if this will ever stop. Stop hurting. Will I ever stop feeling like crap.
I wish I could come to terms with all this and somehow manage, but I don't know how that's possible.

My dad just arrived for a cuppa. Had a huge cry on his shoulder. Needed that.
- Posted using BlogPress from my iPad

Losing his hair

We started the day at 5am with Jayden waking sprightly and happy as always. I truly have no idea how he does it but it always makes me smile.
He has this infectious smile and laugh that no matter how crap I'm feeling it warms my soul and makes me smile.

Raining outside and kids are off to school. I'm so happy to be cuddling my little man at home, something I use to take for granted. A smooch, a walk holding his hand, playing Lego with him, The list goes on. Now I'm getting to do these things with him and at home. It's going to be really hard to take him back to Hospital again next week to have those things taken away again.

I noticed today he's starting to lose his hair. As I brushed my hand over his little head a bunch of hair flicked out with it. That's going to be hard, to see him bald, as if the tube in his nose isn't enough to remind me of his condition. A very big part of me was hoping he would keep his hair. I don't know why I guess if he kept his hair it would seem not so bad, not sure if that makes any sense??

He's off with dad to play around with his car as boys do, I'm so glad he gets to spend that time with him.

We are off to hospital again tomorrow for his blood counts, thought it was Thursday but found out today it's tomorrow.
hoping all is ok.

Monday, 27 August 2012

Monday in hospital

I took Jayden to hospital early this morning for his blood counts. We arrived at outpatients, picked up the piece of paper we need to take to the other part of the hospital where you get blood taken. Sometimes they take the blood from his lines but only if they are going to do dressing changes or something else with his Broviac. This time neither was happening so we trotted off to the place you go to get blood taken ( no doubt an official name but it alludes me right now). He only had to have a pin prick on his finger, which even that is yuck for a child but he took it well and then we had to kill an hour before results got back.

We went for a walk around Subiaco and stopped briefly at a park until other children arrived and then we had to quickly vacate. It's sad that we can't leave him to socialize as he desperately wants to, but we can't take any risks. So we headed back to the hospital for the results, which came back ok. They hadn't jumped a huge amount and his platelets had plummeted but neutrophils were up and haemoglobin up slightly too, from 71 to 75 so all ok. We have to return in a couple of days for another count.

I never like to go to Hospital and hated it with a passion in the beginning. Now however I have met other mums and am always grateful to see their familiar faces when I get there. There is truly nothing more necessary in this crappy situation than to have others that truly get you with every inch of their soul. Some people say they understand, or think they get it but unless they are walking in these shoes with a child with cancer they truly can't have any idea. I know i didn't. I know that there is truly no pain like this that i have ever experienced in my life and would not wish it upon anyone.

I got talking to one of these beautiful mums today and we talked about how the simplest thing in everyday life can open up the floodgate to the very emotions we try so hard to keep at bay in order to cope. She went shopping one day and watched a man with his son, whom was about her sons age and his son was trying to decide what to have for afternoon tea. She thought to herself why isn't that her and her son. Why isn't the biggest decision for that day in her sons life about what he wants for afternoon tea. I wished I could answer that for her with an answer that would relieve her pain. I wish I knew why our sons were picked to spend the rest of their lives fighting for their lives. but I can't. I ask that very question to myself so often and there is no answer.

We are home now and right at this very moment I am sitting in our parked car with the motor running and jayden asleep in the back.

He's taken to only going to sleep in the car during the day, and who am i to argue? He can sleep wherever he wants, as long as he is happy.

Yesterday I was fortunate to have the two women who helped our family in organizing our trip to Chicago and have been huge moral support since the beginning in my home at one time. Research nut and a wonderful lady from Melbourne, Sue, who has walked my very shoes. It was truly wonderful to be amongst women who I can now consider close friends and friends I will have forever. I hadn't sat and exchanged similar stories outside of the boundaries of a hospital ever and was able to do that with Sue. To hear another's pain that you know so very well is confronting but comforting for often I feel so very alone and in particular when I'm home doing normal day to day stuff.

AT hospital there are others there like me, at home there is no one. I'm not talking about my family, as we are all in this together and have our own pain and hurt that we have to somehow deal with. I'm talking about the visit to the shops, seeing the neighbors, walking to the park, driving in my car, watching other families, the list goes on. Simple mundane things that we all take for granted remind me of how alone I am.

I've just put my beautiful kids all to bed and I'm about to follow. I hope sleep comes soon.

Friday, 24 August 2012


I caught a glimpse of a woman collecting my laundry this morning but I didn't recognize her as someone I knew. A very dear friend of mine has organized for people to help with my laundry and it has truly been a huge help. These women aren't laundry ladies, they are beautiful mums who have donated their time to do my laundry in a no doubt already busy lifestyle.
I wanted to race out there and give her a big hug to say thank you but i didn't. I just find it so hard to approach people as I've blogged before and i don't know anymore if its fear of not knowing what to say exactly or if its just the very real fear of breaking down and balling my eyes out making that person feel incredibly uncomfortable.
And maybe that woman I saw in the shops was one of these lovely ladies helping, and I never spoke to her.
I just feel so alone in all this sometimes. Pushing people away because I'm scared of how bringing them in will make me feel but then feeling so alone without that constant contact. I'm so confused and so very, very sad.
I just called in to my neighbors house but didn't realize they were celebrating her sons wife's birthday. I felt awful, one for not realizing it was her birthday and two for intruding. I stood there trying to make general chit chat and all I wanted to do was cry. Standing there watching people doing a normal thing like celebrating a birthday was killing me inside. I felt so alone. Alone in my pain and knowing no one knew how I felt. Them all sitting there happily and passing around a photo of the new edition to their family. I felt like i was suffocating and couldn't get out quick enough. By the time i walked out and back to my home i was holding back the hugest cry ever. I gave jayden to danny, walked inside and balled.
I know why i don't stop and talk to people now. Its because I'm scared. Scared of all the feelings it brings up. Scared of how shit it feels to watch someone else be normal. Scared of having the reality of my life hit me in the face. I don't know anymore what to do. I wish it didnt hurt so much. I wish I could see that life would be normal again one day. I feel like I'm barely getting through this and I'm so scared of this constant roller coaster. I want to get off it.
- Posted using BlogPress from my iPad

Blood counts

Today jayden and I headed into Hospital for his blood counts, all set for an 'all day event'. This time when we got there hardly anyone was there and we were able to get his blood taken without waiting, yah! Some Elma cream applied to his leg ready for his daily GCSF injection in his leg and then we had to go away and come back in an hour.

So off we trotted and luck would have it a crane was operating on a nearby worksite and that's pretty much where we spent that entire hour, watching the crane. Headed back and bloods had come back indicating he should have a blood transfusion however there was some discrepancy because his red blood count was at 71 and anything below 70 they do a transfusion. Because he was just over, one doctor said yes, but another said no and luckily we were able to go with the 'no', with the promise that if anything changes we bring him straight in. And that was great news. Also his neutrophils are up from 0.2 to 1.9 which is brilliant. Crossing our fingers everything else comes up as quick as it can.

Not long after the blood transfusion decision, we were in the treatment room so Jayden could get his dressing changed. A weekly procedure that sucks. Taking a bandage of a child is not nice but removing an entire half chest dressing which has ample tape on it is awful. He hates it. Sometimes it's not too bad for him and he cruises through it but today was like most dressing changes, painful and just plain yuck.

Straight after that he got his injection in his leg and by then he was well and truly ready to get out of there. So was I and it wasn't long after that they let us home. Arrived home just after lunch with Jayden snoozing in the car.

So glad it wasn't an all day event as it has been in the past but in particular today as I needed to take my other son Luke to the doctors. He has been for a long time now watching television with his head tilted. I hadn't thought much of it as had been preoccupied with jayden so just didnt think about it too much at all. But when we were in the states his sister Layla asked about it and he told her that it's blurry when he looks straight. A few goes on google and it was looking like double vision. A few more searches on google and it's related to a brain tumor so not long after that I've been so stressed worrying about being so damn unlucky twice!

I took him to the only doctor in the many, many doctors we saw with jayden that spotted something was up. She was confident that Luke is fine and just may have some vision difficulties so off to the optometrist next. How much do I wish they had said that with jayden too.

Danny and I often see parents leaving with their kids from PMH and you can see they have been their all night but are now going home. It reminds us of the time I went in with jayden in the wee hours of the morning but never returned home till months later. How lucky those parents are and they really don't know exactly how lucky they are. Wish we were them.

Anyway, back to Jayden. He's home still, he's doing well and managing amazingly under the circumstances. He truly makes me look like a big pansy.
- Posted using BlogPress from my iPad

Thursday, 23 August 2012

Shopping encounter

I went to the shops today and saw someone I knew. I didn't stop to say hello when I know previously I would have. She wasnt a best buddie or anything, just a lovely mum from school. But I didn't stop or even say hi. I felt wrong about it afterwards, but i just don't really know how to handle general chit chat anymore.

Just as people probably don't know what to say to me, I don't know what to say to them. Im just not in the headspace to talk about the non important things in life anymore and I'm not sure I ever will be again.

I remember reading once that a life is a blessing, no matter how short or long it is, it's a blessing. It is, no doubt. But that doesn't make it any easier and it doesn't mean I can walk around with a smile on my face and say hello to everyone and have a chat. It doesn't take away how much this hurts and how sad I'm feeling. And can't pretend that everything is ok for the sake of a conversation when everything isn't ok. This is really damn hard and I'm really hurting inside and I'm not going to lie about it.

Jayden on the other hand will chat to anyone or at least smile at anyone. He looks extremely ill and feeling it too, but always manages to smile. He did however show how exhausted he wAs today as every now and then he would drop to the floor and lay his head down but five minutes later he would get up again. You can see he desperately wants the energy that he once had and nothing is going to stop him trying to get it back.

Watching him day in day out like that is my life now. I soak up every minute with him but ache at the very thought of losing him. I couldn't stop and talk to someone as if my whole existence at the moment is anything but this. And i don't want to talk about that to just anyone.

I keep those conversations to my husband and people who know me well, sometimes not so well but have got to know me through this journey and other parents in similar shoes. And so I am left often speechless amongst anyone else and find it easier just to walk away.

I hope one day i will manage to see the world as i once did that bumping in to someone i know at the shops wont be so hard. I doubt it will ever be the same but maybe i could hope for something close to. That I will be able to smile again and it be genuine. Just like my beautiful son does. Everytime I smile at him he gives me a big cheesy back.

There is so much to be said for him and other children like him, their courage and determination to just get on with it. I am forever in awe of his resilience and acceptance of what's happening to him. He is without a doubt my hero.

Wednesday, 22 August 2012

low platelets

We took Jayden in to PMH hospital today to get his blood counts done. It showed he was low in platelets so we had to remain there while he got some through his broviac line. By the time it was all over we we were home by dinner. Our appointment was early in the morning and were hoping we would be home in time to pick kids up for school and organize dinner but as always, didn't happen. Never mind.

Our next appointment is this Friday when he has to have his counts done again and his dressing changed on his Broviac line. likely to have blood transfusion then as well, according to nurses so we will be in for the day again, but that's better than staying the night. in fact Jayden was getting himself so worked up when he was hooked up to the transfusion today as he thought he was staying. I'm so glad we didn't have to and of course, so was he.

When we got home he was so excited to see his brother and sister and his toys. it truly is his best medicine for him- being home.

- Posted using BlogPress from my iPad

Tuesday, 21 August 2012

Remembering what's important

Its day 13 and i never believed in my wildest dreams that we would be spending this much time at home during mega therapy. Granted, it is very unusual and hence i am super grateful. we are not getting too excited though or ahead of ourselves yet as the doctors have assured us he will get sick and when he does he will be in hospital for a while so for now and today we are just really thankful.

He's been great today, sick, but happy and we are all so very happy to have him home with us.

I got to spend some much needed quality time with my daughter last night. We sat up watching tv and chatting about all things ten year old- school, boys, 'home and away' etc. I haven't sat and watched tv with her since early this year, before this all began. We watched the X Factor which was nice, took my mind somewhere else for a moment or two. seeing all the proud parents watching their kids perform. Our love for our children is truly like no other and you could see it in their eyes.

It was really nice to spend that time with Layla, we both needed it. It came at a cost though, as jayden did not have a good night. His feeding machine was also going off all night and danny and I were tagging to get it sorted. but even though my eyes were hanging out of my head this morning, it was worth having that time with her.

Unfortunately though my son Luke was not as fortunate. He always seems to be the one that misses out the most and it's so evident in his behavior. He goes to bed earlier than her so he wasn't with us.
He's Difficult at the best of times but when jayden became ill he's definitely taken bad behavior to a new level.

Most days I understand and if I get a moment on my own with him he's good. But this morning was not most days. I was tired and didn't react well to his once again bad behavior over something trivial but meant something to him, and I lost my cool and got very cross with him. Things came out of my mouth that shouldn't have and no doubt may scar him for life along with this whole crappy situation. I'm left thinking, how can I do that? I know I can't be super mum but I wish I could be at least close to that. Wouldn't it be nice if i could get it all perfect. Keep it together and not lose my cool.

Luke is a beautiful boy and truly very loving and caring. He's amazing with his brother and awful too, but completely normal sibling behavior. He doesn't cut jayden any slack because he's ill which is good for jayden to feel normal. However it's that lack of understanding of this situation that is so very hard for Him. He's just not old enough to get it and even if he were I'm sure it would still be hard for him to cope with. I wish i could be better at dealing with him. He deserves that much. I can only hope that he grows knowing I love him just as much as jayden even though from a child's perspective it my not seem like it.

I even missed his moment in the spotlight the other day at school assembly and I was so sad for him. His little face showed so much disappointment when i told him we weren't going to make it. Both him and his sister had something they were saying in the microphone at school assembly and we weren't there because we had to take Jayden to hospital.

When I was growing up my parents worked so much that they were never at our assemblies or any event in fact that we were participating in and I promised myself I would not do that to my kids as I knew how that felt.
Of course I understand now as an adult that they were doing their best but as a child it was heartbreaking. So to do that to my own kids the other day was truly crushing.

My friend and sister both videoed it for me but of course it wasn't the same, certainly not for them. I watched in the video my sister did, both of them at separate times look out into the crowd and I knew they were looking for us. I know that because that's what I always did. Even though my parents said they couldn't make it I still looked, hoping, on the off chance they did. My heart ached watching their little faces doing that for it was a reminder of what they are missing now.

It was hard enough to share myself around my once three well kids but now with one so very ill and so very little, its almost impossible. In fact it is so imbalanced that it would seem extremely unfair in the eyes of a child.

I hope that one day they grow to understand how hard i tried to meet all their needs. I know im failing dismally in some areas but i hope I'm doing ok in others. I hope that they can look back and understand, that in some way their feelings they have now will make sense to them later and they won't feel unheard. I hope that I am listening then, when they need me and that I won't be preoccupied. I hope I will hear their cues and be there, for at the moment I know I must miss a lot of them.

I picked Luke up early from school today because I couldn't stop thinking about the morning. Jayden was sleeping so we got to spend a good half hour together reading books and playing with his dinosaurs. It's those moments that are important, not all the other crap we tend to worry about. I want more of those moments when just being together and nothing else, is all that matters. I hope he remembers those times and not what he is missing out now.

- Posted using BlogPress from my iPad

Monday, 20 August 2012

having a moment

I sat in the car today with my son and Danny out the front of our house (Jayden loves hanging out in the car) and watched families walking by after picking up their kids from school. I thought about how simple our lives were when they were like the families I'm looking at then.  We made it so complicated though by worrying about the little stupid things in life. Now our life truly is complicated and it doesn't stop being so. Ridiculous how shit mattered back then but now it means nothing.

Every now and then I get a flash of normality since we have been home, when I'm cooking dinner again for the kids and sitting at the table, making a bed, or picking up toys and its truly the best feeling.  I cant believe how much I miss that. I know Ive said it so many times before but I miss it so much, its very sad. Because back then Jayden was a normal well little boy. Because back then life was simple, even though we didn't realise it at the time. And back then my heart and sole was not aching like it does now.

I can pretend for a moment that life is as it were, but its not. My little boy wakes and he doesn't eat, he requires bucket loads of medication and food and water through his NG tube. His face is so pale every inch of him is white. He smiles the same, and plays the same, his personality hasn't changed, but his body has. His body is desperately trying to fight off a very nasty cancer and at the moment cope with a huge dose of chemotherapy doing its damage to his every cell in his body.

I look at him and all I want to do is take away what he has and have it myself. It should have been me, not him. I think of my life and how very grateful I am for it. That I never had to suffer as a child like he does. I never thought of it as a long life until now.   I want him so badly to have the life I had, the length of it and the absence of the physical pain.  I would give anything to swap places with him. 

Its so very hard to watch him day in and day out so very ill. No matter how hard I try I just cant do it with ease. It bloody hurts beyond words. No parent should have to live this and definitely no child should have to be going through this.

He makes it look easy at times but I'm his mum and I know him. I know he is really struggling and working really hard to keep up. I know it is an effort for him to keep going and I love him for his determination. He is so very brave, and I wish so very much he didn't have to be. I wish so very  much he was just a two year old boy enjoying life as he should.


Sunday, 19 August 2012

New NG tube

Jayden woke up not the best today and clearly feeling the effects of his counts being low. Hes amazing though and keeps on going. Faded pretty fast by the afternoon though and had a big sleep.

He vomited up his NG tube not long after he woke and we are now sitting in hospital waiting to have it replaced. The new NG tubes they have at the moment for him aren't weighted enough and the damn thing just moves so much when he vomits. This time when he vomited it came right out of his mouth so i had to pull it out of his nose. Not nice for him
at all. He just had his bloods taken and we will have to wait for those results as well. The results will determine whether he needs a blood transfusion or not which would require us to stay.

I had to ring my sister to stay with Luke and Layla before we left and we headed off shortly after she arrived.

How different a Sunday evening has become. Sadly my kids seem to be use to it all and think what seems like, nothing of it. when we tell them we have to leave but will see them later, when exactly we aren't sure as we don't know, they seem ok.

As we drove of leaving them behind I suddenly realized how normal this life really has become. Luke no longer cries when we leave, Layla doesn't ask when are we going to return and danny and I just jump in the car like robots with bags that are already packed from days ago. as for jayden, well, even after being told we are taking him to the hospital to get his tube in his nose put back in he just says,'ok'.

Its two hours later and we are On our way home. Fortunately
Jaydens blood counts aren't low enough yet for a blood transfusion so we can leave.

He had his tube put in which is one of the worse things to witness happening to your child. Hate it, hate it, hate it. The nurse was very good though and super quick thank heavens. I have seen it take a lot longer and a lot more traumatic so if you could call this a 'good one', then it was.

We are now all laying in our usual spots for bedtime and as always everyone's asleep but me. Beginning to think I may have some serious sleep issues.

Jaydens really restless beside me. I get that awful gut feeling that it's not going to be a good night. I hope I'm wrong.

Im so very glad we got to return home as every day home with him is a bonus. It's not a given. We have no promise that tomorrow he will be home with us or that he will be well. We just have to hope and wait and see.

Saturday, 18 August 2012

Jayden went to sleep as soon as he put his head on his pillow tonight. He was so exhausted. Big day trying to do what he would be doing if he was well but with much less energy to drive him.
We are still at home which has been really nice and amazing. We went into hospital on Friday and I fully expected we would be staying given the type of chemo but because he doesn't have a temperature or infection yet we can go back home.

We were there all day though as he had to get his broviac dressing changed, blood taken from his lines, his daily shot he gets in the leg to help bring his counts back up and an overall check by the doctor. His bloods took ages to come back as they had lost them somewhere along the line somehow but when they did we expected the results would be that his neutrophils are 0.0something-low and so was everything else as it does. By the time everything was done it was the afternoon and we made it home before dinner.
It's saturdaynight now and again I find myself blogging as I lay on the sofa bed between my two boys and danny not far away snoring. I don't know how he manages it but he goes to sleep so easily? They all do and I'm left listening to that blissful sound that i too wish i was making.
Today we all spent at home as we have too, can't risk taking jayden anywhere at the moment apart from parks and other outdoor areas but that's fine. He kept me busy putting feeds into his NG every half hour to an hour because I can't bolus him without him vomiting so i have to put very small amounts in often. He doesn't eat at all or drink at the moment so its become really important to get every drop in that i can and him keep it down. He only vomited a couple of times today and it was mainly mucus so it appears that the mucositis is around. I'm hoping it won't get too bad but we have a while to go yet before we are out of the woods and his counts come back up. For now we are just happy as each day comes and goes without a temperature and just hoping the next will be the same. Preparing for the worst but hoping for the best.

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Thursday, 16 August 2012

Another sleepless night

Can't sleep yet I know I should be. Thinking about my little man now sound asleep next to me. There's nothing more beautiful than watching him sleep. Knowing he is comfortable and content. Squished up against me in the now well used fold out sofa bed mattress. It has that not so wonderful dent In The middle from being used so often so now no matter where u start from when you go to sleep you end up squished in the middle. Which is nice when I'm squished against my little man but not so nice if he's having a dreadful sleep and tosses and turns. Luke sleeps on the other sofa next to us and dad is On The single bed we put out here so we can all be together.
I'm so very tired but my mind just won't stop so I can sleep. Thinking, thinking, thinking. So much is different in my life now and although it's become our new 'normal' I will never stop wishing for the old normal back.
When I'm out of this house and I see other parents with their children I think about what could be going on in their minds and try to remember what it felt like to be one of them. It's hard to explain but now I'm often if not always worried, anxious, concerned, stressed and sad, constantly thinking about jayden even when I think I'm not. It's an overwhelming emotion of concern for my boy that never leaves me. I carry it with me always. It's
there when I go to the shops, it's there when I'm taking a shower, cleaning my teeth, talking to someone (anyone), and when I'm spending time with my other kids. That's when it really sucks. When I know I'm not giving my all to my other two children. When they are busy telling me about their day and although I'm listening to them a big part of me is not. That part of me is with jayden. I can't shut it off, it's always there. It's my life now.
I look at the other parents and not only do i think about whats going on in their minds but i try to remember that 'feeling'. The only way i can describe it is that feeling of being able to breath, breath normally. Without the tightness in my chest and pain in my heart. I try to remember what it was like when i could do that. I wonder if ill ever get to feel that again, that my children will see and feel it from me again.
Sometimes I feel like I'm living someone else's life because the one I'm now living is so foreign to the one I once lived. Crazy stuff.
Really hard to get my head around and most days I feel like I'm fumbling my wAy through, managing as best I can on that day. Sometimes I get through the day unscathed and others I barely get through at all. And all the while my little man just plods along none the wiser. Well maybe not completely oblivious, I'm beginning to see he understands a lot more than we think he does but exactly what he makes of it all we will never know.
We are still home and he proved our doctor wrong in being certain he'd be back within two days but we are still home and it's day three. Tomorrow we have to go in however for blood counts, checkup etc and no doubt need to remain there. Back to Hospital. Im Already packed and organized to go. How quickly my new normal has changed my things to do list. No longer groceries, dinner, Ironing (although never did much of that) kids to school, lunches, etc. Now its bag packed mine and jaydens always ready to go to hospital, medications enough of and to be administered, feeds and NG tubes and constant vigilantes on temperatures, germs And washing hands.
I don't think I ever thought my old 'normal' was simple or easy or blissful at the time but i know that now. Now I look back on that previous time and yearn for it like no other. Now I wish what ever i did in my past lives to deserve this i could take back. That a miracle would bestow upon us and all would be ok. That i could go back to having the old things to do list.
I know I will never have it back, and the ache in my chest won't go anytime soon, I look at my son now and I want to cry, I'm lost for words as to how it makes me feel right at this very moment. But all I have now is hope. Hope that we will get some of that life back. That Jayden will be well and home well without medications and NG tubes and no one staring at him oddly again. And even though I know my pain won't go, or the worry of his cancer returning we will be together as a family and that will be pretty damn good.
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Wednesday, 15 August 2012

At home

We are into our third day at home and I can't believe it! So happy he has lasted this long!

I did get a phone call yesterday though and as soon as I saw the blocked number on my phone I knew it would be the hospital, really didn't want to answer it. Of course I did and it was the Doctor informing me that jaydens urine from Monday has shown a bacteria that is growing and we need to get another sample, bring it in and collect some antibiotics.

Getting a wee sample from a two year old and a 'clean catch' one at that is near on impossible. Especially when that two year old isn't drinking or eating. We are putting water and his formula down his tube and can only do it in small amounts otherwise he vomits, so all a bit tricky. Eventually we did however get a Weeney amount of urine, all of 3 mls If that, and off I went with it to the hospital.

Saw our oncologists upon arriving and he explained to me that the bacteria in his urine is not a nice one. Can't do things by halves our Jayden, if he gets a bacteria it always seems to be the 'nasty one'. Wish they could tell us it's a not too bad one.

Anyway came home with antibiotics and not long after giving it to him he vomited. Damn it, so we didn't know how much he actually digested And have to wait for the next day to give his next dose. Next day is today and his dose went down fine this morning but we are having so much trouble with his NG tube that then end of it keeps coming off and everything slowly trickles out if we are not onto it quick enough which it did not long after that dose and again we don't know how much went in, nightmare.

His nose is bleeding a bit today hoping that won't become a problem. But other than those hiccups everything seems to be not so bad so far. Still have my bag packed and ready to go at the first sign that's something's up which we almost did last night when he woke me looking very unwell but he fell back to sleep and I lay there awake next to him waiting for any sign that things are not good. He was fine and woke chatting away.

to look at him and my intuition as his mother i know that he feels awful but he just gets on with it. Every now and then you see him stop and breath but then it's as if he lets himself recharge and off he goes again. Everyone around him right now is amazed at his strength, there is truly no way any of us would be up and about if we were him.

I'm really trying hard to just focus on today and everyday as it comes because when I let my head think further it's just not fun. Today he is hanging in there and so am I with him. While he smiles I will too. Hoping for another good day tomorrow and the antibiotics he s taking I'm hoping are doing their job.

Tuesday, 14 August 2012

We are home!

Yesterday wasn't quite as good as the day before because he started vomiting again in the morning. We were concerned this would affect his chances of coming home again but luckily the doctors said ok. We had to wait until late in the afternoon before we could actually go though as medications had to be made up for us to take home and he had to be given an antibiotic IV over two hours. Those waits seem to always take so much longer than they are, bit like waiting for a kettle to boil only longer.
We packed him up and headed home around five and on the way home I looked back at him in his car seat and he looked so very ill. I jumped in the back and sat with him holding his hand and he said nothing the whole way home. I was so worried as I thought we were going to have to drive back, he really looked unwell. BUT when we pulled into our driveway and he laid eyes on his sister Layla, he became a changed boy. We couldn't believe it! He was screaming her name over and over again till she heard him, pulling at his seatbelt to get out and when he finally got out he raced over to her squealing with delight! He then raced in side, well, wobbled fast, saw his brother and embraced him then got busy checking out all his toys that clearly he missed. The neighbours came over and he was so excited to see them and I truly don't believe I've ever heard him talk so much. His auntie linda is staying with us at the moment and he hasn't left her alone since we got back, absolutely beautiful. I am so glad they allowed him home because this truly is the best medicine for him.

We were told by our oncologist not to expect to be home more than a couple of days,if that, as he will most certainly spike a temperature and have to come back. So I repacked our bags last night ready to go back in should that happen in the middle of the night.
Luckily so far, so good. He's home and he is so very happy to be here and so are we to have him!

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Monday, 13 August 2012


If I just think about today and not the past or the future then I can say today was great. Jaydens stem cell transplant went well, there was no complications or reaction to the preservative they are kept in and he behaved as if nothing had happened.

He never vomited once today which was truly a miracle and he smiled, laughed and was generally his normal happy self. He was fortunate enough to have his fabulous neighbours come visit him in the morning and stayed till the stem cells were transplanted and after lunch his auntie Linda came and played with him for ages. He laughed so hard with her when they messed about and you couldn't have wiped the smile off his face or mine. When he's happy I'm happy and it was a good day to feel that today.

When you have a child with cancer you are forced to put your life into perspective. None of the petty little crap that bothered you before ever does again. What becomes important should have always been but we often take those things for granted. I will never take my child's health for granted nor my families love. I will always put those things first and any of the other crap I ever worried about before I know longer give a second thought. The most important thing in my life right now is getting my beautiful boy well and doing everything and anything I possibly can to make that happen. I won't sit up worrying about what I forgot to buy on the grocery list, or who said what in the playground, or that my house may be untidy or the car I drive an old bomb (not that I ever did worry too much about those things). But I won't worry if I miss out on a show or a party or whether I even got invited. And I won't care what I wear might not be up to scratch in others eyes or anything else that is so not worth worrying about.
Right now all that matters is today jayden is happy, that both my other children and danny are well and also happy and that's all I need. That's all that matters and that's all that should matter.

Tomorrow I am hoping and praying for the same.

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Sunday, 12 August 2012

Day four

We thought jayden was doing ok vomiting wise but by midday yesterday we were very wrong. He's been vomiting regularly just like before and not tolerating any food. Fortunately he's on IV fluids so he won't dehydrate. Shame though. I hate seeing him be sick yet he seems to manage it like its just another thing he does. Amazing. He never ceases to amaze me how strong he is.

His face lit up when his brother and sister came to see him yesterday and was a different child. And today when Luke came again he was a changed little boy. His siblings certainly know how to cheer him up. Luke sits and plays with him, lays on the bed with him and watches a DVD and just hangs out with him as brothers do and it's just beautiful. They have a special bond that is special to them alone.

Im so proud of luke at how he treats his brother just the same and not like he is sick. He makes me so proud how much he considers him in everything he does and the way he shows he cares about him. It's just so beautiful to be witness to that.

I think jayden missed his sister today though as she isn't feeling very well at the moment so we couldn't bring her in today, just in case.

Danny and Luke will be leaving soon but hopefully he can bring the kids back in tomorrow after school.

Its a few hours later and danny and luke have left and its just Jayden and I. Its quiet in the ward tonight but will be busy tomorrow.
It's nearly bedtime and we are both hanging out in our pjs with jayden busy cleaning with the alcohol swabs the nurses gave him and me adding to this blog.

Feeling a little out of sorts. Hard to be at ease in a hospital room. It's not home and just not a place you really ever feel comfortable. I feel a mixture of loneliness, sadness and the ever present anxiety for what's to come. There's no getting away from it or the fear. I'm so very scared. I can't explain it with any other word. And when I'm left alone the fear becomes so overwhelming That all I want to do is run from it but there is no place to run.
I spoke to a friend earlier and of all the things we talked about one very small part of the conversation has stuck in my mind. That was of the mention of hospice. My biggest fear that although I am not facing now, is a very real possibility in the future. I try not to think of it, I have to for if I did all the time it would surely turn me in to a wreck. But the mention of it made me think of it tonight and I can't get that damn thought out of my mind.
I hate being left alone to think. I wish I could think of something else that could just give my mind a rest from the worry and from the pain that comes with it. But as I lay here now with my beautiful little man with his now chubby little cheeks and his big brown eyes all I can think about is how much I hope and pray he gets through this. That nothing serious happens to him and he gets to the other side. That we see him again home playing with his toys and siblings and being the normal two year old he was meant to be one day soon.
We have three rounds of this chemo and we don't know yet how he's going to go with this first one. We just have to wait and see and that's the scary part.
Our onchologist reminded us today it's going to be bad. "You are going to be very stressed leisl through this and it's going to be very difficult for you", he said. He knows me well.
Jaydens mood and the way he is feeling dictates how i feel. If things are going to be tough for him I'll know it and I'm scared as hell of watching it and not being able to do anything to stop it.

I look at his perfect little face and wonder how on earth he got to be so damn unlucky. It just makes no sense at all and never will.
He's asleep now. So peaceful.

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Friday, 10 August 2012

My little man

Jaydens not himself. The effects of the chemo are slowly kicking in and he's just not his smiley happy self. He doesn't want to be moved and objects strongly to his six hourly bath. Fortunately last night our beautiful nurse sympathized with that at 2:00am and allowed me to wipe him down in his bed instead. Poor little might he doesn't understand. All he wanted to do is sleep which right now must be the best medicine. the nurses allowed him to sleep in today as well which was magic, thank goodness it's Saturday and not hectic and rushed in here like a Monday. So our schedule was able to be made flexible, yah for that.

He's watching madagascar on the DVD player at the moment because he watched ' cars' so often that it no longer works. Madagascar will be next no doubt.

He's stem cell transplant is due on Monday, today and tomortow are rest days.

He doesn't look himself. His cheeks and feet are swollen from the fluids and he just looks buggared. I know he is. He doesn't want to sit up which is usually the first thing he asks for and is something he is still unable to do without assistance.

I'm worried about his leg as well. When we first came in he had been limping all day and preferred to crawl rather than walk. They are going to X-ray it on Monday. I hope it is none of the things I am worried about.

This time since I've been in ward 3b I have met a lot of other parents walking a similar path to ours. I think when I was here last the parents were here still but I was unable to talk to anyone so i only met a few. I just wasn't in that head space back then and i couldn't leave my sons beside for a second. The parents i did meet back then i still see now and was so looking forward to seeing their faces when we returned. I missed them like family as that is what they feel like now.

This time round I'm ready to talk to more people and it has been very much needed. There is something very comforting about talking to parents in similar situations. A sense of understanding that no one else could possibly have. No story is the same but they are all taking one day at a time and hoping and praying for the best possible outcome. I hope for all these mums they get exactly that. I hope that we all can look back on this journey one day and know it was worth it to see our children well and happy.

My little man wants me. Big cuddles he needs I hope. My scrumptious little man...

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Thursday, 9 August 2012


Anger is a terrible emotion. It runs through your veins like fire and doesn't allow you to think of anything else but what your angry about. If you can't get a hold of it you wind up saying or doing something that hurts someone you love or someone who is just trying to help. Mix it up with fear and anxiety and you have a cocktail for disaster. I have learnt over the years that writing things down when im angry, scared, sad or any awful emotion can prevent me from saying something to someone i love or someone whos trying to help me that I may well regret later. I use to keep a diary as a kid, then a teenager and an adult and treat this forum as such. Maybe that's my mistake.
I do forget that strangers are reading this and my only focus is on getting that awful emotion out so I can focus on my son best I can. He doesn't need to see me angry, sad and upset. He needs to see me strong and getting on with it. My husband, kids, family and medical staff don't need to see it either. They are all doing their best around me and the last thing I want to do is take my emotions out on them.
It's sad to see this angers people. I don't like that emotion or any other that doesn't make us feel good. I don't want others to feel angry and I'm so sorry for that. This forum is just to let emotions out and should t be taken any other way. People have been so wonderful to our family and I mean no disrespect to anyone. I treat this as a diary like I did before but it's not and I see that now.
I will no longer respond to comments made, I can't. I'm sorry.
I will however continue to use this forum to express how I feel and allow my family and friends to know how things are without them having to ring me. That is what it was always intended to do.
Thankyou to everyone for your ongoing support and I'm sorry to those who I have bought out the terrible emotion of anger.

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Early morning

Something woke me at 4 am and I can't get back to sleep. I'm laying In My own bed with my five year old snuggled right next to me and I can't stop thinking about Jayden. Danny stayed last night. It was really hard to leave him yesterday afternoon but I knew I had to. Danny needed to spend some time with him
And my other kids needed to see me. I hate been torn between the two.

I miss him. I can't stop worrying about him. I will be with him soon but I wish he were here with us. I'm worried how he is coping, how his night was. Is he in pain?
When I think about my little man I well up. The tears just keep coming and I'm beginning to think I may need help from the pharmaceutical department. I feel like I'm drowning in a sea of emotions most days and can't find the bloody shore. It's shit.

My kids are fabulous. no matter how shit I feel they are a reminder to keep on going. So often I just want to crawl up in a ball and hide from it all and cry. But I don't. They are so excited to see me when I get home and they give me the strength to keep going.

My little man needs me, they all do and I know I have to get up, suck it up and face a new day. It's bloody hard though.

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Wednesday, 8 August 2012

Day one

Jaydens currently siting on his hospital bed watching cars the movie on a portable DVD player. He's just starting to get into movies and 'mater' is his favorite character. Thought it would be 'McQueen' like his brother but he seems to prefer trucks at the moment. Am sure that will change.

He had a good night sleep considering how many times he was woken and for the first time since we got back he slept in until 7:30am, amazing. I was awake but happy to hear him sleeping peacefully squished up next to me. He's a bit bigger now so sleeping together on the single bed has become very snug. And he always sleeps in the middle, rascal.

The doctors a milling around at the nurses desk along with nurses and you wonder what they are talking about if medical at all. Kinda reminds me of road works when you see the many workers leaning on there brooms or shovels but never seeming to really be doing anything.

He's fasting at the moment as they have to do another Echo on his heart as the one they did in the states didn't take a measurement that is necessary for the chemo to start. They will need to sedate him to do this and while he is under they are going to change his dressing of his broviac because it has quite a bit of blood around it from the seeping and then bring him back to his room to insert the catheter. Hopefully the sedative would not have worn off by then and he will be none the wiser. I was advised by a fellow cancer mum not to be there during this process and if he is sedated I will definitely take her advice. They assure me though that if his sedation is not still effective they will give him more before doing the catheter. I hope this will be so. I'm hoping it will all go ok and not be too uncomfortable for him.

It's now a couple of hours later and he has been given his sedation but it's not taking. He's fighting it and having a huge tantrum that seem to be lasting a lifetime. They have now decided to move him to the treatment room and do it there. Sometimes I feel like no one is really certain of everything here. One minute it's a certain way and the next it's changed. Makes me very nervous.....

Another hour or so has passed and he is now sleeping with the first lot of chemo pumping through his veins. This is all truly fucked and sometimes i just don't know how much we can all take.

The sedation wasnt as effective as i imagined and there was no way i was leaving him when the catheter was inserted. It was catheter traumatic and he screamed for what seemed like hours afterwards. For the first time since this journey began i had to leave him with the nurse while i walked away to breath. He had been screaming for what seemed like an eternity and i just had to walk away. I haven't sobbed so much in ages. How exactly do i see the positive side of things as someone once wrote here, when my son is screaming in pain and all he wants is for me to take it away. Do i smile and say well, at least your alive? Mmmm? Don't bloody think so. If you walked these shoes you would know that none of this is fun and if you expect to read a happy entry then go somewhere else. Yes, I'm angry now. Angry at everything and most of all angry at how bloody unfair it is that my innocent child has to suffer like this. And he's not alone, this whole hospital is full of screams from children and mothers anxious, stressed and beside themselves with worry. Walk their shoes and then comment on how we should be more positive. Walk their shoes and then see how easy it is to smile.
I'm so fed up with this journey and I'm so fed up with watching my child suffer. I'm fed up with keeping it together and I'm just fed up.

This sucks.

Tuesday, 7 August 2012

My brave little man

My brave little man soldiered on through yesterday, just as he always has. He seemed in a lot more pain this time round though and required pain relief. I don't know if it was because of a different surgeon or the new placement of the broviac which is now to the side rather than the middle. He didn't have the best night sleep last night because of it but we rarely ever do in hospital anyway. He was up mega early again and very tired by early morning. He's wound seems to still be seeping blood which has never happened before but when I asked about it they just said it was post op stuff.
We are home for the night tonight and back in tomorrow afternoon to get 24 hours of fluids before chemo starts. His wound is still seeping and am worried, but will keep checking through the night.

Not looking forward to going back at all.

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Sunday, 5 August 2012

As we leave our driveway on the way to hospital the tears well up in my eyes. I think of how our life use to be and how easy it was and it makes me so very sad. I watch all the other mothers dropping their kids off to school as we drive past and wish i was one of them. Luke was sad this morning and i knew it was because he knew he wasn't going to see me when he got home. He didn't want to go to school. I miss him already and the life we had. I miss the routine of school lunches, the havoc mornings getting ready, the worry of what to cook for dinner, the lost hair brush or shoes, the dropping of at school and chit chat with the mums afterwards. I miss the normal.

My son sits in the back sipping his drink excited about being in the car and going for a drive. He has no idea that soon he will be on an operating table with a catheter being pierced into his vein and leading to his heart. He has no idea he will wake from it with two plastic tubes hanging from his chest and feel like shit. no longer will he be able to have the baths he hasbeen having with his brother these last couple of days or the normal bit of life he has been enjoying. He has no knowledge that in a few days after that they will inject chemo into those lines and his life will be hell again. He will have a catheter in his penis as well so he doesn't pee on his skin because the chemo is so toxic and it will all be shit.
I'm so sad today and I can't stop crying. I wish my life was different. I wish Jaydens life was different. I wish we were all back to how it use to be.

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Friday, 3 August 2012

another day at PMH

We spent most of yesterday at PMH again as Jayden had a number of appointments.  We first went to Ward 3B in the morning where Jayden had to have a heap of swabs taken from just about every orifice and then to pathology for bloods to be taken. Poor little bugger has been poked and prodded so many times its just so bloody wrong its horrible. He burst into tears as soon as he laid eyes on the lady who was to take his blood as he recognised her from before when we were here last and knew exactly what she was going to do to him.  It was and always is awful to witness and absolutely never gets easy. Oh to just have to worry about an immunisation shot every so many years.  We then had to go to another area of the hospital for a swab to be taken from the back of the inside of his nose. A long tube was inserted in his nostril far enough to make him gag and a swab taken.  Fortunately it was quick but none the less traumatic for a two year old. Shit of a day out for him, "where's the park?" is what hes probably thinking or certainly wishing we were at instead.

After all that we returned to 3B, as we had a review appointment with Dr nick where he sat us down and gave us the run down of the treatment to come. "Its no picnic" he began. "no shit" I thought, when has any of this been a bloody picnic. Absolute hell is what I would call it, not a damn picnic.  He informed us of the side effects, the nasty shit that will happen to him and the risks involved. None of which are nice, none of which I want to subject my son too and none of which I have a bloody choice. I truly hate this beyond words.

Jayden starts this nightmare again this Thursday. We thought its wasn't until Monday 13th but Nick told us he wanted to "crack on" with his treatment and start Thursday. Jayden will be in over night on Monday to get his Broviac inserted then home Tuesday but back again Wednesday to get pumped full of fluids ready for Thursdays first injection of vial chemotherapy. We are in for a long hall of vomiting, skin peeling as the Chemotherapy this time comes out in his sweat and is so toxic it burns the layers of skin off, and mucositis  that gets so bad they suspect he will be on morphine for some time. We could be really lucky and he sail through but the odds are against us as no one sails through this type of intensive chemo. Theres risk of liver damage that in worse case scenario is fatal, hearing loss, bleeding, infections, the list goes on. We were told he most certainly would get a temperature and some sort of infection as this type of therapy brings his counts so low its beyond scary.Its all shit.

Layla and Luke had to be picked up by their uncle from school as we didn't arrive home until late in the arvo. They are use to this now and at least this time are a little more prepared for things to come.
I don't think any of us can be as prepared as we would like to be but how can you prepare yourself for this nightmare. Really, there is no way of knowing what is going to happen or how any of us will cope.

Its 8.00am on saturday and we have been up since 3.30 am, looking forward to having a normal wake up time, what ever that is.
Jayden is happy, playing with his siblings and it crushes me to know that soon that will dramatically change. He has no idea, maybe thats a good thing, he doesnt have to worry at this moment like I am. he doesnt have to be scared at this moment and he can enjoy it for what it is.I wish i could. But I know whats to come and what i dont know scares the shit out of me, because we have no idea, really, of how bad it will be, or if he will even survive. I havent lost him yet but sometimes I feel like I have, I grieve when he hasnt even gone but the very thought of it burns at my chest and pains me to no end. Im so very scared for him and for all of us. I dont know how he will cope, but Im hoping with all my heart that he soldiers on through this like he has before.  

Thursday, 2 August 2012


Jayden, happy to be home with his trucks.

With his favorite neighbors.

Riding his truck

On the flight over
I can't sleep yet I'm incredibly tired. My mind just keeps racing, thinking about the weeks that have been and the weeks yet to come. Scared. Really scared for jayden. Watching him today so happy and playing with his toys. Laughing, eating, enjoying life. Worried about the weeks ahead of him.

He had us all up at 2am but i didn't care. Sleep doesn't matter when i get to see my little man so happy. Nothing else matters even at 4am when I'm out the front in the freezing cold watching my two boys playing on the battery operated car they have, theres no place id rather be. Watching them Driving up and down the footpath with luke steering and jayden giggling in the seat next to him. Im tired but i don't care. I don't want this moment to end. I don't want my little man to be sick ever again. But I know that he will.
It pains me to know end that soon he will be so very Ill again and there will be no laughing or playing. Only suffering and fighting for his life.

Wow this sucks so bad. Im tired because of lack of sleep, of this whole journey.

We had to go to PMH today as Jayden was booked in for a ultrasound on his neck. They needed to check that his veins were ok to put the new Broviac in on Monday. I held him as the woman put the jell on his neck and scanned. Before this I only ever knew an ultrasound as a device for scanning your unborn child. I sat there thinking about the day I found out that Jayden was indeed a true living baby inside me. Previously I had several miscarriages and they were all blighted ovums so no heart beat. But on that day I found out this baby was there. He was alive, a heart beat and I was truly blessed with the gift of his being. I still can't believe that now only two years later I am witnessing my beautiful gift of a boy fighting for his life. How can that be?

I sorted through his clothes today hunting for some that will fit As he has gotten so chubby from the
steroids that he is too big for a lot of them. Amongst them i found some of his baby clothes.. Each piece reminded me of a moment, a memory of how he was when he was well and none of us knew what was growing inside his head. I packed some of them up to give away but others I couldn't bring myself to let go of.

He's laying next to me now, sleeping, what I should be doing. I wish sleep came easy for me. I wish I could just close my eyes and find peace from my thoughts.
But I can't.

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