Friday, 29 June 2012

Phone call

OMG I just wrote a huge blog and lost it! Modern technology and me do not mix at all. It really isn't the same having to write it again, I do wish I knew how to retrieve it.
Nevermind. Here goes again...

I spoke to Dr Goldman today and the MRI looks good so far. He still has to compare it to the scans at Procure but at the moment it looks fine. We also briefly discussed Jaydens protocol. Dr Goldman, Dr Chang, Dr sue Chi, my onchologist Dr Nick and others were All at a meeting at Toronto this week and whilst there they discussed Jaydens treatment. They were there for other reasons related to their specialties of course but were able to get together and talk about jayden. Collectively they thought it was best that he remain on the protocol that he is doing. I still have reservations as to the reasons behind their decision but at the moment I have no choice.

Fortunately yesterday thanks to Research Nut I was able to speak with another mother whose son has ATRT. No doctor or friend could have made me feel the way she did because they aren't walking in my shoes and she has. It was only after speaking to her did I feel ok about jaydens protocol. I still think its shit. I still feel crap about doing it but at least I don't feel so alone with it now. Thank you Lori.

At the moment jayden is laying next to me asleep. I'm going to stop writing now as I need to join him but my other blog was much longer and included the days events. I'm too tired to write it again.





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MRI

We were up early today again, jayden had his treatment at 7:00am and then not long after he arrived back we all set off to the big city Chicago for his MRI at Children's Memorial Hospital. We drove in relying solely on the GPS and I don't think I've ever been so nervous in a car as I was today on the huge interstate freeways and masses and masses of cars. We nearly got lost by taking one wrong turn but thankfully by shear luck we managed to get where we were meant to go. Parking was the next stumbling block but not near as stressful as the journey there.
I'm writing this blog the following morning and am very tired to say the least. Jaydens MRI didn't happen till late in the afternoon/evening and we didn't get home till after 8 last night. By the time kids bathed and bed Danny and I were cactus and asleep very soon after. Hopefully today we will find out results as don't want to be waiting over the weekend.
The new hospital was amazing, it is like a hotel, in fact we thought it was when we got there and we're in the wrong place but it was the right place. Didn't get to see dr Goldman as I had hoped but hoping to speak with him today. In fact, I'm going to stop blogging so I can make that phonecall.



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Tuesday, 26 June 2012

Not a good day for vomiting

I'm laying next to my beautiful boy and my Mind starts thinking about bloody mega therapy again. It jumps in and out of my thoughts all day and night but for most of the time I try with all my might to fight it off. I am so damn scared of losing my son under such horrific circumstances. Losing him because we said ok to poisoning him. It is so shit it's truly unbelievable. I don't know how other parents in similar shoes do it because I'm struggling with this decision big time. All I know for certain is I don't want to make such a decision and I don't want him to suffer in anyway. Yet I don't have a choice. Not only do Danny and I have to make such a horrific and disgusting decision but either way he will suffer. It's just crap. This life we have now is so fucking painful it just sucks.
Sure, we have good times and we make them as good as they possibly can be but both of us know the reality of this situation and it does suck.

Before jayden fell asleep to night he held my face in his hands as I lay next to him and said 'you ok?'. I cuddled him and told him i was and how much i love him and soon after he was snoring. The sweetest little man I know and so completely unawares of his diagnosis and he's asking me if I'm ok. He had a pretty crap day today as we couldn't seem to control his vomiting. Did three over a period of half an hour this afternoon and again before bed. It's so painful to watch and disheartening as we try so hard to get food into him and when we do it's a huge accomplishment and we are so happy. But when he vomits it all back up again shortly after you just want to cry. I sat there watching him tonight after he vomited and he carried on as if nothing had happened and my heart just ached. As I cleaned up after him I just wished so bad that he was better. That he no longer had that dreadful nasal gastric tube stuck in his nose and he could just be able to have a meal and keep the darn thing down. It's just so shit and sometimes I just want to scream " enough is enough! Someone give him a bloody break!" yet he seems to cope. I look at him now, sleeping soundly and think how when all this stuff is happening to him, he's not complaining, he isn't screaming for someone to give him a break, he just carries on. He had his treatment today, he vomited heaps, when he wasn't being sick he was playing and now he's asleep. How is it such a small little man can take so much on the chin?


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MRI planned for wednesda

Jayden Treatment was delayed again today which was fine in that we get to stay home for him to play with the kids more but not fine in that he's been fasting since midnight and although he doesn't have an apetite as a rule, since he's been having steroids he stills asks for food. It's awful telling him he can't because he obviously doesn't understand why and winds up getting very upset. So the morning is spent distracting him from food until after his treatment. It was also made even more difficult and worry some as he hadn't had much to eat or drink the night before as he was in hospital having his scan and a lot of the time spent waiting. But with all that in mind, he was coping exceptionally well just as the little warrior that he is, does in general. By the time we got in to have his treatment is was 10:45. They made sure he got heaps of IV fluids to begin with which was reassuring and I spoke to the doctor on duty about the weekend. I'm really impressed with the level of communication between hospitals here and it didn't take long for them to view the scans and made an assessment of today's treatment.
Jayden also now has an MRI planned for Wednesday morning just to double check everything is as it should be. Fingers crossed everything will be fine.

Jayden is so use to his visits at Procure as being routine and normal now that when he sees Mary Anne come out to the waiting room he gets up and ready to go in before she even says anything. When we are in there he sits in his bed with the box of toys that Mary Anne has bought in especially for him
to play with. The toys were donated by her son for jayden to play with while he's in hospital. He gets given a bucket of stickers to choose from to stick on his special calendar made for him to keep track of his days of treatment and lately it seems to be flying by. Today he got a bit crazy with the stickers and put a lot on but nobody is fussed. Mary Anne then attaches the little sticky strip to his big toe to monitor his heart rate followed by taking his blood pressure. All the while she's talking to him and involving him in the whole process. Him and her then open up an alcohol swab each and clean his lines together. She then draws the heparin ( I think that's how it's spelt) out and flushes the lines and connects him to an IV drip. Not long after that the treatment room lets Mary Anne know they are ready for jayden and the aneathasist has been in to introduce himself and check all is good. Every time Mary Anne walks out of the room to check for something he's asking for her. "Wheres nanna? "He'll say. When we are ready to go he asks her for the keys and she gives him a set of keys and they pretend to drive 'the car'. Which is the bed to the treatment room. Hes pushed by her in his bed down the hall to the last treatment room along the hall where they call in his time and get ready. He lifts his arms for me to pick him up and we walk over to his little bed admiring his photo on the computer screen that faces us as we go in and has a play with some form of remote control that hangs from the ceiling. Again, he snuggles into my chest ready for the milky fluid to kick in and go to sleep. My little warrior will never cease to amaze me with his strength and ability to cope in the toughest of circumstances.


When he came too though today he was miserable and had thrown up and was hoarse in the throat from the tube that goes down in while he is under. I got to sit with him and cuddle him till he awoke and then we came home. By the time he saw his brother and sister though he was back to normal and as happy as can be.
We just hung out at home today and only went out for a walk along the little lake near by. Nice to be just chilling out. All of us are putting on weight since we have been here because the food isn't exactly for the weight conscious and hard to refuse. Jayden not so much because he doesn't really eat. But every now and then he has one of these chocolate yogurt things that taste just like sloppy cold chocolate. Loves it.
I have a lot of good photos I wanted to post with this blog but our computer has a virus in it at the moment and I can't get to them. Bummer.
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Monday, 25 June 2012

Scan all clear

Danny and jayden didn't get back till late last night but with fabulous news. The CT Scan is all clear. I was so happy to see my smiling little man and even happier to find out he is ok. Great news.


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Sunday, 24 June 2012

In hospital

Danny took jayden into hospital tonight after I called the oncologist regarding my concerns I wrote about yesterday. He woke again today slightly stiffer in his right leg than normal and vomited this evening.
when I explained his symptoms they were very concerned and wanted to see him immediately. They are still there and I just got off the phone to Danny and jayden has had a CT scan and they are waiting for the results. I am so incredibly nervous and scared senseless about the results and so hoping he will call soon with good news. I wish I was there, I could here him upset in the back ground and I so wish I had of gone. I only didn't because the kids wanted me to stay and at the time jayden just wanted to go for a drive and wasn't bothered who was taking him and after getting off the phone to the oncologist I felt like I was going to fall apart. I knew feeling like that was not going to be helping jayden in an already stressful situation where as Danny is as solid as a rock. But now all I want to do is see him and cuddle him and be with him and this is going to be the longest wait ever!



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Saturday, 23 June 2012

Cancer sucks in everyway possible

There's no two ways about it, cancer suxs on so many levels its just shit. This morning Jayden woke at 4:30am vomiting. It was awful. He did another later and I noticed his balance was not as good as it has been. He seems stiff in his right leg when he walks. And when we went out in the car later I was looking back at him and noticed he looked paler than normal and unwell looking. It took me back to the day I was driving the kids to mandurah for a Xmas celebration last year and I watched him in the rear view vision mirror and I noticed he looked different. One side of his face appeared different and he looked paler than normal. It frightened the shit out of me that I'm looking at him today and feeling the same way. I know everyday for the rest of his life I will look at him and worry if the tumor has grown back. I will never stop thinking about it and I will never stop watching his every move, look, color, worrying that something has changed. I don't know if it has and we can only wait another day or two to see if it's the same or improves. I am hoping it's a one off and he just felt bad today but I don't know and won't know unless someone looks. We did have an MRI. Scheduled for the Thursday that's gone because he was throwing up a bit in the beginning of the week but by Wednesday he was good and they cancelled it. I wish we had of had it now for then I wouldn't be so damn worried. Although I'm not sure it's even possible for me to stop doing that. How do I do that? Dr Goldman is away until Thursday now as well as dr Chang so am very nervous about not being able to speak with them. I know there are others but it's always nice to be talking to the doctor you know.

My mind had time to stop thinking for a while about it all while we were out today thank fully. If i don't give myself a break from worrying i know ill go crazy. we drove out to a place called The Wild West. It's like an amusement park but smaller and the rides are designed for little kids so not too scary. which was great and the kids had a ball. It was an hours drive away and for most of the journey there and back Luke had Jayden amused and laughing. everytime I hear them or watch them play together my heart goes out to them both. They are such great mates and neither of them truly understand the magnitude of Jaydens situation. Luke treats him as if there is nothing wrong with him and cuts him no slack at all, he doesn't fully understand what's really happening to him and I don't think he gives any of it much thought other than how ripped off he feels because he doesn't get the same attention as jayden sometimes. We understand that and try to keep him involved but sometimes it doesn't happen. He loves jayden and looks out for him as does his sister. He tells me if jaydens lines are getting wet when he's having a bath, let's ne know if he thinks he's going to vomit or is vomiting, always on the ball if something's up. He didn't notice what I did today however but i wouldn't expect him too. Hes just always got jaydens back and I love that my kids are so there for each other. It pains me greatly to think that they may not be one day, that Luke may lose his mate and layla her brother. I try not to think about it but my goodness it's hard sometimes. When they are laughing so hard together and messing about with toys I just want to scoop them all up in a big bubble of safety and never let anyone or anything hurt them or tear them apart. Fucking cancer, I have no control over its fate and it bloody kills me.

For Jayden today was fun. We all had a lovely time at this place today. He made me super amazed when he pleaded with us to go on the rollercoaster. It wasn't exactly the usual type you'd find in the big amusement parks and is designed for smaller children but fast enough all the same and a few ups and downs. Luke and Layla were very cautious and didn't want to go but no way were we going to be able to stop jayden. I asked the guy running it if he was too small but said he was ok and Danny took him on it. I couldn't believe it . You should have seen his little face, he was so small sitting in the seat that the safety bar almost touched his cheeks. he looked a little apprehensive at first and I thought he looked scared going around but when he got off he gave me a big hug and squealed with delight. The guy operating it said to me ' you got yourself a little fighter there'. And he couldn't be more correct. He is a little fighter, the spirit of a warrior and I'm so damn proud of him. His cancer may rob him of the long life he deserves but it will never take away his spirit or the importance of his existence.




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Friday, 22 June 2012

Getting it

It's 6 am in the morning, jayden woke us at 5:00am. So instead of letting him wake the kids I geared us up and went for a walk.


The first bit of exercise I've done since I've been here. We walked to the local garage and I bought a coffee. So strong here, they love their coffees. The morning bought a lot of men on their way to work, most in their 40s to 50s to the service station to get fuel or coffee like me. We walked by a few as we walked into the store and each one gave jayden a huge genuine smile. It made me so happy I wanted to cry. Some people in this world just 'get it'. They see the world and everything in it for what it is and nothing else. They see jayden as the beautiful little two year old that he is, the little fighter that he is and treat him as such. Others stare, judge him, move away quickly because they think they'll catch something or simply pretend he doesn't exist. These men got it, and they made jayden feel great. Normal. Because he is. He's just been dealt a rotten card but at the end of the day he's just a two year old. The only thing that's not normal about him to me is his super courage and bravery.
As we crossed the road to go back jayden saw a convertible sports car stop at the lights and he was so excited. The man in it gave him a wave and made his day. Another person who 'gets it'.
It's so nice to be around people like this. My dad is such a man and I miss him dearly since we have been here. He always treats everyone no matter who they are, what they have or whatever with the same respect and dignity. He 'gets it' and always has.


I'm now writing much later in the day, it's 6;45pm and jayden is asleep next to me. He didn't have his treatment till after 9:00am today and we didn't get back to the apartment till after eleven, I think? We spent the rest of the day hanging out here, watching tv, having nerf gun battles and eating. It was really nice and everyone especially jayden were happy. The kids got a parcel in the mail today from our beautiful new friends in Houston and they were stoked. Each got something and they were all so happy about it. There was sidewalk chalk in the parcel as well and they spent ages drawing on the newly painted black carpark- not black anymore! thankyou Liam and piola.


The kids are out with Danny at the moment seeing the new movie BRAVE and I'm snuggling next to my scrumptious little man. He was amazing today. When I picked him up in the treatment room today and took him to the spot where i stand holding him while they inject the milky fluid he just put his head on my shoulder and snuggled in, preparing himself for the effect of the drug. I couldn't believe it. He still whimpered as he felt it take effect but was asleep in no time. I laid him down carefully for the team and left. I couldn't believe how brave he was. He never stops amazing me with his strength.
Not long after they called me back in, he was still asleep and again today very groggy when he woke up, even worse than yesterday. I am so glad it's Friday so he has the weekend off. We are going to buy a cake tomorrow for him to celebrate his achievements. Every night before we go to bed he insists on watching a short video on my phone that I took of the nurses at PMH bringing in a cake to him in his hospital bed for his birthday and celebrating his birthday with him. He loves it and every night asks for it. So we decided we would celebrate his achievements so far and make another short video.
I forgot to mention that I spoke to dr Chang today and he told me
he has been talking to dr Goldman and they are all going to Toronto next week for a conference with a lot of other oncologist. He said he would be talking about jaydens case and I am looking forward their return next Thursday. The doctors here without a doubt are amazing they really make you feel like you are the only person they are treating.
Jayden had a good day today and that makes me happy. I hope with all my heart they he has a lifetime of days like today. And I know that my little man if given the chance, will grow to be a man that 'gets it' because he already does.

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Thursday, 21 June 2012

Legoland




The machine was down this morning at procure and we got a call early to say stay home until they rang for us. We ended up going in an hour later than normal which wasn't too bad as I was worried it might be down for the day. Below are pictures of Luke and jayden mucking about before we left for procure.








They weighed jayden today at procure and he's put on 0.1 kgs. Very exciting. Most parents celebrate milestones in their kids but I now celebrate every little detail like putting on 0.1 kgs! Yah for jayden. He even ate half a small tub of yogurt thanks to the steroids giving him an appetite. Every day is a bonus for us and today is no exception.

Jayden was much better at procure today in the treatment room and even though i knew he was scared he just seems to except it as normal. So sad really. It couldn't be more far from the truth. Theres simply nothing normal about sedating a two year old every week day for six weeks. And it's only because he's two that he knows no better.


when he woke from being anesthetized he was much groggier than normal. Monday is usually great and tuesday not too bad but by the time the end of the week comes along he's really knocked about and it seems to hit him harder. In saying that though not long after taking him home for a drink and push of milk through his tube he was ready to join us in going to Lego world. He still looked a bit groggy on the way in the car but perked up when we got there.

He now has steroids everyday to help stop the swelling in his brain and prevent vomiting so he doesn't have a day time nap anymore but this means that an outing with the family in the middle of the day is possible.

The kids had a blast there looking at all the lego creations and riding on the lego rides. Jayden loved playing with the lego the most and would have done that all day if we let him. A bite to eat later at a place similar to subway and then back in the car for the trek home. Poor jayden vomited at the restaurant which was heart breaking cause he managed to eat a bit of his sandwich. I can't wait till the day I see him eat a meal, enjoy it and keep it down.



He's asleep now after a big day. It made me feel good to show him a place like Lego land. The ride we went on in there which is like a ghost train at home but everything is made out of Lego he really enjoyed. As I sat next to him in there I watched his little face light up at all the sights and watch in awe of everything magical. I want to show him everything in the world, allow him to experience everything he possibly can and make him smile and much as I possibly can. I don't want him to miss out on anything.

Wednesday, 20 June 2012

Mega Therapy

I haven't stopped thinking about mega therapy since i spoke to dr Goldman yesterday. It took me so long to get my head around doing the first phases of chemo and that is nothing compared to what is to come. It's hard enough watching him being sedated every day let alone poisoning him with such high doses of chemo that the toxicity of it has been known to kill patients. There is a very real possibility that jayden could indeed die during mega therapy. yet as a parent if I want him to have the chance of surviving according to doctors I have to take that risk. How does a parent make that kind of decision? How do i take that risk?
How do i take my son back to hospital in perth to suffer? Its truly bloody insane! I am so beside myself with worry about it and wish with every inch of my sole that Danny and I did not have to make this decision. We will have to return in a few weeks and watch our son once again be injected with substances that are nothing more than toxic poisons. It makes no sense to me at all. It never will. None of it.


Jayden has been so wonderful and well at the moment it destroys me to think we will make him extremely Ill again but even worse this time. He's walking heaps now on his own. Getting in to everything like he use to and having us all in fits of laughter with his now vibrant happy personality and mischievous nature. We were all laughing so hard at the dinner table tonight as he messed around with Luke and Layla. He's so happy at the moment, always smiling and has really settled in here in Chicago. I finally have the son I knew before all this back and it feels amazing. He worked the waiting room the other day at procure, chatting to all the men that sat there. The little man I use to know who was really social is once again. I don't know what Chicago did to him but he's really happy here and loves the people just as we do. It will be good to come home but sad to leave such an amazing bunch of positive, warm, kind, and extremely professional people.



He's laying asleep next to me now but not before we had a good laugh and a cuddle. Oh my goodness, how I love this boy. His tube that runs down his nose into his tummy and his broviac that's inserted into his chest doesn't stop him from being him. He knows nothing else. Sometimes he asks where mine is And Luke, Layla and dad but most days he just accepts its just him. Sometimes he complains about the discomfort of the tube in his nose but most days he says nothing. Lately he has taken to playing with his lines and unclipped one which nearly gave mum heart failure but most days he leaves them be. He accepts his torso has to be covered when having a bath and only allowed to have a small amount of water but sometimes he wants to be in his brothers deep bath. More often than not jayden just gets on with life as he knows it. The last couple of times at Procure he hasn't been as scared and although still cries when the milky stuff kicks in, he's managing. I truly don't know how he does it. I don't know how he wakes everyday and just gets on with it. Danny took him to procure this morning and I missed my little man terribly. I took the kids grocery shopping and when we finished we went and picked them up. Oh my goodness I was so extremely happy to see his little face and he gave me the most humongous smile ever! He jumped into my arms and didnt stop chatting, he had so much to tell me and it was so nice to be holding him. He was equally excited to see Luke and Layla. I am so glad they are with us as I am sure that is the main reason he is able to get through all of this , knowing that when he wakes up they are there to play with him. And they are both so wonderful with him. I'm so lucky to have such beautiful kids. Luke and Layla love him so much and have so much fun with him. I watch them play and laugh and can't help but think the pain they too will suffer if we lose this precious little man. My heart aches for all of us and I hope with all my heart that none of us will have to feel that pain.

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Tuesday, 19 June 2012

Good day

I'm sitting in the waiting room of doctor Goldman after dropping off jayden at procure. For the first time I looked back when I walked out of the treatment room. Normally I keep walking because I'm frighten of how I will feel for what I see but today I did. I watched for a second or two as the nurses and aneathatist gathered around him on his little bed preparing him for the therapy. All on his own. It made me cry seeing him there so vulnerable. I wanted to run back in and grab him and take him home. But I didn't. I turned and walked out, tears in my eyes and pain so unbearable in my chest.

Now I'm sitting in the waiting room of the building next to procure to speak with doctor Goldman. A mother with her daughter are sitting not far from me. Her daughter looks about laylas age and clearly unwell. She has cancer too. The trademark bald head, sullen eyes and thin body. Her mother has the look of a cancer mum. Keeping it together because she knows she has too, no doubt wishing life was different for her daughter, tired, frustrated and sad. It's shit that my family is going through all of this and shit that so do many other families. I watched her and thought about Layla and how grateful i am her and my son luke are healthy and well and free from this dreadful disease. You could see the woman was keen for her daughter to be seen and I felt guilty when dr Goldman called me in first as I was only there to ask questions.

Dr goldman took the time to let me ask all the questions I needed too about jaydens treatment and talk to him about all my fears regarding the mega therapy jayden will have to do upon returning to Perth. He doesn't use the protocol we are on and I wish we had of had a choice as to which protocol we wanted for our son. Dr Goldman gave us much higher statistics on the survival rate of his ATRT patients and I wish we were doing what he's doing. We talked about alternative therapies and he was honest about his views which I greatly appreciated. He was so beautiful to talk to. I will be very sad to leave him as our oncologist. He would have to be without a doubt one of the nicest people i have ever met. he made me feel heard, and really cared about Jayden.
Shortly after, I was called back to get jayden and when I went in to see him he was much groggier than normal. Bless him. He was trying So hard to fight it off but couldn't. We soon after grabbed a cab and went home. Danny was out with Layla and Luke at a water park so Jayden and I hung out at home and went for a short walk to Walgreens. It was actually one of the nicest days I've had yet we really didn't do much at all.


This picture is of jayden with Maureen at Procure. He loves her and so do we.



Jayden sitting out the front watching the bobcat. We sat out here for ages today sipping cups of milk and watching the gardeners moving wood chips.



Jayden messing about around Layla's bed while she's out!



All the kids at dinner tonight.
I also posted a video of jayden messing about on my Facebook page at leisl males, very cute.
We had a lovely day today together and now I'm going to take my daughter Layla out shopping.
Jaydens asleep, after a fun day


My little beautiful man.

Monday, 18 June 2012

photos from today

The kids out the front on the big pile of woodchips.
And below: Jayden obsessed with the bobcat.




After jayden woke from his nap today we all went to Cantigny Park again and no one was there it was fabulous!! We all had a great time.


Cranky

Not having a good day today. Tired and cranky. Cranky at the world and this shit cancer. Cranky at just about everything at the moment and would just like a second to come up for air. Most days I'm not so bad and more sad than cranky but today I just want to scream. I'm even getting cross with jayden and that's making me cranky with myself. I know I just need a decent night sleep but that's just not possible.
Jaydens next to me at the moment not asleep but watching. He's meant to be asleep as its his nap time but today he's not having it. It's a Shame because when he sleeps I get time with everyone else because when he's awake that's not possible. But today might be one of those days where I just have to blow off what I originally planned otherwise I wind up even more cranky because things didn't work out the way I had hoped.
We were up at 5am this morning and boy am I feeling it now. Thought our appointment was for 7 am but it wasn't till 8 am so drove back to the apartment not long after arriving at procure. Gardeners here had dumped a huge pile of wood chips out the front of our place to use in the gardens and of course our kids thought it was a great opportunity to climb it and mess about on it. Jayden joined in too but didn't climb just rammed his bike into it and was actually more fascinated by the bobcat parked next to it. What I think he wouldn't give to ride in one of those! They entertained themselves for ages with the big pile until the gardeners came along to use it. By which time jayden and I had to leave to go back to Procure. We weren't there long until Mary Anne our nurse called us in. Jayden really likes her and has taken to calling her Nanna, we have no idea why for she looks no way near older enough to be a Nanna but maybe it's what she represents by caring for him and taking a big interest in him and everything he does and says. He is always her first priority when we are in there and He knows it.




We had yet another new anesthetist today, all have been wonderful. It always throws me when they walk in the door because they don't where uniforms here, so I never know what anyone does when I meet them until they introduce themselves which they always do. I think it's great for jayden because he's not so scared as they just look like regular people rather than ones in a particular colored uniform.




He got to play for a while on the bed because they were running a little late and he was happy. When we began to wheel his bed into the treatment room you could see his face changing but not as bad as it has been. He knows the routine and lifted his arms up for me to pick him up when we got there and take him to his spot in the room. He cuddled me close as they injected him with the white substance and he held on tighter as he felt it taking affect and let out a small whimper, then was asleep. I don't know what more to say about this time without sounding like a broken down record. Its never easy and seeing the pictures in the paper the other day of what happens when he's under made it all so much more real, if that's even possible. It's a long road and every morning we do this feels like a lifetime. It's squeezes every last drop of emotional energy out of me every time I take him in, I want it to be the last and only time but know we have days ahead of us.
An hour later, maybe less I was called in because he had woken. He vomited again and has done a few times after he's woken from the treatment but nothing out of the ordinary.
He was happy to leave and for the first time waved goodbye to Mary Anne as we left. I feel he is going to develop quite a bond with this lovely lady and it will be sad to say goodbye to her when we leave. She has become part of his daily routine and part of his life.
He's asleep now and time for me to spend some time with the others. I should sleep I know but I can't. Im not as cranky now.But I will always be cranky with cancer, it sux!



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Sunday, 17 June 2012

One day at a time


I fell asleep today cuddling my beautiful little man and woke not long after to the gentle sound of his snoring. He's had a big morning. He woke happy today and has done the last three mornings, which has been fabulous. We all were up early thanks to his early bird wakes and in the car by 8:30 to go to a local zoo. Only 15 minutes away in Wheaton. Beautiful little zoo full of farm animals and native animals. So ducks, badgers, squirrels in the trees, owls, coyotes and gorgeous little birds including a woodpecker. Kids loved it, especially jayden. It was nice and low key so not many people and plenty of room to walk or run around. A few hours later and we are back at the apartment having lunch and enjoying the air conditioning as it is very hot outside. Don't think we will do much else today but maybe a swim.
My thoughts today are of a happier nature as no treatment to remind us of why we are here just good old fashioned family fun but not without kids arguing in the back of the car on the way there.
Jayden is still asleep and Luke and Layla are now watching a video with dad.
I love days like this, normal. Back into treatment tomorrow with a 7 am start now and for the rest of the treatment. Jayden will be fasting from 12am so his feed will be switched off and we will be faced once again with the challenge of getting the necessary amounts of calories in him during the day. That's tricky because he doesn't voluntarily eat so we have to push milk through his tube at regular intervals. He's on steroids now as well and hoping that will increase his appetite. It's a constant balance of medication to prevent vomiting and getting calories in at the right time before any medication starts wearing off. We were out by half an hour this morning and he vomited all his scrambled eggs up which was a huge bummer as he rarely eats but did this morning.
Not looking forward to tomorrow but trying to stay focused on today.
I never imagined my life would have turned out like this where I'm living one day at a time. I never imagined I could feel so shit somedays and so incredibly sad. No words can describe accurately or with enough power the feelings that I have most days and no one could know those feelings without walking the same path. I didn't grow up knowing anything about what is happening to our family now. I never imagined I'd be a nurse, practitioner, physio, speech therapist, or chemist in my wildest of dreams. But here I am now doing bits of all those jobs with my son. I never had any of them on my list of things I wanted to do when I grow up. All I knew was I wanted to be a mum. I never knew that mothering would extend to this. I never knew it was going to be the biggest challenge and hardest road I would ever in my lifetime take. But here I am. I know I am not alone in walking these agonizing steps, I know there are others. "One day at a time" one of those people advised me once, just take everyday "one day at a time". I understand that now and although most days I find it hard not to look into the future and scare myself senseless of the prospect Of nursing my son till the day he dies, today I am listening and today I am "feeling the breeze" as another person advised me. Today is a good day and i am listening to that advice. Im feeling the breeze on my face, enjoying the companyof my family and thankful that we are all together and taking today, one day at a time.


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Saturday, 16 June 2012

No treatment today!

Today was great because we could relax knowing jayden didn't have to go in for treatment or have any procedures. We took it slow for the morning as no need to rush anywhere. The kids wanted to go to the children's museum for the second time today but this time we all went. Jayden loved it and was thrilled with all the fun things to see, do and touch. It was really beautiful to see his little face light up with excitement and watch him walk around touching, building and discovering. Layla and Luke were fabulous with him and took him for a tour of everything there. He tagged along with them in the beginning and then branched out to do his own thing. I never get use to all the stares he gets from people while he played. When you are 'different' people stare, they rarely say anything or ask about what's wrong with jayden, they just stare. I wish they would just ask sometimes. Get it off their chest and stop staring. It shouldn't bother me I know and it made me think of all the other people in this world that are 'different'. So many people on a day to day basis have to put up with people staring at them. Maybe they just get use to it like jayden, but I can't. Maybe it's just because I'm his mum and I can't help but be overly protective of him. Either way it sux and it's a constant reminder if his condition- like I need reminding- not.








We couldn't stay too long though as it was getting busy so an hour or so later we left and came back to the apartment. Danny decided him and Luke would get a haircut and Layla and I decided to go shopping with jayden. We got the groceries we needed and jayden insisted on getting a toy shopping trolley. As I was walking through the toy aisle I couldn't help but over hear a little boy complaining to his mum why his brother was getting two toys and he was only getting one. She told him it was because his brother had a needle today. As I heard those words I wished it was me saying that about jayden. I wished that I was buying jayden his toy shopping trolley because he had his immunization needle not because He has a dreadful cancer that will potentially take his life in the next couple of years. How bloody nice it would be to have a simple problem like that? I wish I was buying it for bravery for him for having a needle and not because I feel I have to cram his life with every possible enjoyment available because he may not get much of a life left. Of course he is brave and he deserves every award possible for his bravery but that's not what I'm thinking when I buy something for him or take him somewhere. I'm trying so desperately to fill his life with happiness and good memories for my goodness he has enough bad ones.
 
He's asleep lying across my belly at the moment. He has taken to falling asleep on top of me lately and I figure that's because he's worked out I get up when he falls asleep and by sleeping on me it makes it more difficult, rascal. Bless him my little angel. He's beautiful face so angelic with his patch of baldness on the top of his head that hasn't grown back from brain surgery. He will lose the rest of his beautiful blond hair in the next rounds of chemotherapy. I hate thinking about it. Not just the hair but the whole shitty thing.
We saw the photos that were in the West Australian Newspaper last night and had a big cry. They were lovely but some were confronting. We don't see what happens to jayden when we leave him after he has been aneathesized and it wasn't the nicest thing to see but in some ways at least now I know. My poor little pumpkin looked so vulnerable and all I could think about it how much I wish I could stop all this happening to him.
Today he had none of that done to him and today he got to be normal as much as he could be with his brother and sister. I wish for many more of days like today for my precious little man.



Friday, 15 June 2012

End of the week

Its Friday and the end of the first full week of Jaydens treatment.
He got his new gastric tube in today whilst under anesthesia and I was so relieved about that as I could not have watched him go through that all again awake and nor could he. Hes asleep now, of course, as its the only real time I have to blog or to do much at all really.  The kids are at a beautiful park not far away from here with Danny and having a lot of fun. I just rang to check on them all and they are climbing a big tree house as I write. I would love to be there with them but am just as happy knowing they are happy. That really is all that matters to me. We decided I would stay home with Jayden as he had a huge morning and was very tired from his treatment. At procure the anesthetist did a few things differently with Jaydens anesthesia  today to see if they could control his vomiting, and so far he hasn't, yah! But, he is a lot more tired today than normal. So he is having a big nap now and was fine before he went to sleep. I think he may have woken up now though as I had the dryer going and when it finishes i forgot that it makes a really loud buzzing sound-nightmare. Am hoping he slept through it, will have to wait and see.

Jayden was not happy going to Procure this morning at all. he objected getting into the car which is really unusual for him and once we were on our way he kept saying "no, no not there". Oh my goodness it was crushing. How on earth do you explain to a two year old that what you are doing is hopefully going to make him better? I wish I knew how.

When we got there this time he got to play for a while in the playroom as the previous two days we went in pretty much as soon as we got there. He still didn't want to go when we were called and was upset as always when we were wheeled in to the treatment room where he would be anesthetized.  It was made even more crushing when I was holding him as he was injected with the milky substance that he had his arms around me so tight that even after he fell asleep he was locked on to my neck. I had to pull his little arms of me and place him down. It was truly awful.
I wish I could see the positives in this process, but its so hard when so many yucky things are happening to him. I wish there was another way that didn't require poisons with the chemo or anesthesia with the radiation. Or any of this at all infact. There is nothing in this whole process from when he was diagnosed to now that is truly nice to him. It all takes a huge toll on his little body and it all frightens him.

I found myself surfing the internet today looking for alternative ways to cure his cancer. I can see why people get locked into these alternative cures in a desperate bid to stay alive or in my case to keep my son alive. Some of them seem too good to be true and some are just weird. I wish though that they were legitimate, that there really is an amazing alternative to the chemo therapy that is planned ahead for him. I wish I could find a cure that didn't mean horrible scary things happening to him and that would keep him alive. This all so still seems so bloody unreal. how can this happen to my son? I ask myself it everyday. What the hell did we do to deserve this huge unlucky shitty blow?? I find it so hard to accept it all, everything is so beyond my capabilities to comprehend or deal with it and its just so shit.

I think I just find it hard to get on with it without feeling like shit about it all. i wish i could be more like Jayden who doesn't seem to think twice about it all. He deals with it in what ever way he knows how and then forgets about it and carries on to the next day. I know I keep saying it but he truly is the strongest, courageous and inspiring person I have ever known.
I have no pictures from today but found this one on my phone. Its of jayden, not long before he was diagnosed. Its been so long now that I have almost forgotten those days and the days we have now have become normal for us all. I hope for the day to see him once again enjoying water without having to worry about his lines getting wet and to see his face light up like this.

Thursday, 14 June 2012

Day 6 treatment

We had a shocking day today starting with a 5 am wake to Jayden very upset. He threw up not long after and set the tone for the rest of the day. Damn it would be nice if he had a good stretch of feeling good.
He vomited after he came to from the anesthetic today after treatment and then again not long after being back at the apartment. That one was the worst as it forced his nose tube out so far that when i tried to feed it back in he gagged so much i pulled it out. That left us with no way of feeding him and a cranky, desperate to have a sleep child. I let him sleep and then got busy on the phonecalls to sort something out. Within an hour we were at Dupage hospital not far from us and they inserted another tube. This one however is half the size and is not working out so well at all. I'm looking forward to tomorrow in the hope that another is put in but this time the right size and this time under anesthetic hopefully. We won't know if it can be done at Procure yet until tomorrow but I truly hope so for watching him get it done wide awake was torture for me and terrifying for him.
I'm so bloody over this whole process. I'm tired, cranky, worried and wish just for one night he was comfortable and had a good night sleep. In fact I wish that for all of us but especially jayden. We spent the majority of today inside hospitals which we are all use to so know happy snaps today.
He's asleep now and I'm looking forward to joining him.



To everyone that reads this blog and writes messages or sends me emails of support. Thank you so much. I wish I could thank you all individually. Know that I appreciate you all so much, the words Of support, wisdom, encouragement and advice. I read it all and I appreciate every word. Thank you. Xxxx
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Wednesday, 13 June 2012

photos from today

walking!
peek a boo
Photos from our morning at Cantigny Park
Layla and Luke on top of an army canon
mum and Jayden
Cheeky monkey
Layla and Luke
Jayden woke up very happy today!
Dad and Jayden on an army tank at Cantigny Park