Monday, 30 April 2012

Monday

Back in hospital today as jaydens vomiting got quite bad last night and came in to have him checked over by onchologist. His tube that goes into his nose needed a new dressing as well from all the vomiting he's been doing. It has forced it out a bit and torn the dressing.
Oncologist saw him soon after we got here and has changed his nausea medicine and suggested we stay the night to get it more under control. Couldn't do it to jayden though as he was already crushed when he realized we were going back. And we are back in here tomorrow first thing for MRI. So now I'm waiting at pharmacy in hospital for new medication and then hopefully head home. Can't believe how much time we still spend here when we are out patients. Yet another 'normal' day in our lives now.
Took jayden for a long walk around the hospital and nearby park first as we had at least an hour to wait for pharmacy. It's been an hour now but Danny arrived not long ago and has now taken him for a walk while I wait.
Having another sad day although there isn't any happy ones anymore just degrees of sadness. Sometimes I can keep it together and push on by doing what has to be done. But most days the sheer mention of the situation brings me to tears. It really doesn't get any easier.



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Sunday, 29 April 2012

Some snaps

Jayden, Layla and Luke at the dinner table last night. Although he didn't eat it was a close to a normal setting we could get. Kids were very happy.


And playing in a kitchen draw with his brother.


With dad!


And mum!


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Home time

We are still at home, thankfully and that is why I havent posted much.  Busy looking after my beautiful kids and of course its all made a little bit busier having one child very ill.

We arrived home Thursday night late in the evening as it took a while for the docotrs to give us the all clear.  Kids had to get takeaway for dinner and when we got home they were allowed to stay up playing with Jayden. Jayden was over the moon exctied to be with his siblings as they were with him.
So it was a late night for everyone on Thursday, and a busy one with Jayden.  Getting use to administering much needed medication around the clock and waking to him vomiting makes for a huge night.
Kids woke up early as kids do, and had to pretty much fend for themselves as I was very much preoccupied with Jayden.  Bless their cotton socks they got themselves organised and took themselves to school, they were an hour late but we couldnt do anything about that.  Layla may only be ten but sometimes she seems so much older, taking charge and making sure her little brother got to school okay, shes truly amazing. I admire their strength on a daily basis to cope through this huge change in our family life and they are forever surpising me.

Friday morning Danny and I had to take jayden back into the hospital as he was booked in for and audio test because the chemotheraphy damages their hearing. Therefore after each cycle it has to be checked. we also had to get his bloods done again and because he no longer had a line they had to prick him again. Poor little buggar I really dont know how he manages.
We then had to go back to Ward 3b and get his results for his bloods and his final dose of chemotheraphy for this cycle, Vincristine.
Agan , no line, so they had to insert a new one in order to administer the chemo.  Of course a nasty drug and absolutely vital that they get the line in correctly in the right place otherwise the chemo burns the tissue inside-nice!
Fortunately all went well and no burns, and the process took less than and hour. The line was then removed and we were free to go.  we were there till 3.00pm and that was our day. Poor little Jayden during that time had nothing to eat or drink as he relies soley on his feeds that go through his nasal tube.
And that is an example of a normal day now in our lives.
Ridiculous, who would ever think that this was normal?? Normal shit is what it is.

Friday night was not the best as Jayden was vomiting a lot and we were close to returnig him in the morning. however we stuck it out and managed to get it a little bit better under control so Satudrday night wasnt as bad.
We had a great Saturday just chilling and hanging out. Kids have been great with Jayden and he has been improving more and more each day. he is clearly so much happier at home and outside of the hospital. We try and get him outside as much as possible as we know once we go back thats it for a while. Its difficult though as he can only be off his feeds for a few hours in every day and the rest of thetime he has to be on his bed and attached to the pump. He hates that but its his only form of nutrition and hydration.

We went for a walk this afternoon over to the school across the road, just like we use to. Except of course its not like we use to. Jayden loved the breeze on his face, you could see it in his eyes and he enjoyed watching his siblings climbing the playground and running around. knowing that all the while he was wishing he could join them like he use to. What I wouldnt give to see him stand and be able to join them.  I he only has the short life that he is likely to have I wish he could be at least doing it as normal as he possibly can. I wish he could be running with them and climbing the playground so for just once he could forget that he was so sick.

He sat at the dinner table tonight for the first time since we left that fateful bloody shit, crap, hugely devastating night on the 8th of March. It was so beautiful to all be sitting together once again, laughing and chatting like we use to. Its not the same of course, and we know never will be, but we tried to make it as it was, as well as we could.   

Saturday, 28 April 2012

Motherhood

When I was growing up I never imagined motherhood would be living the majority of my time in a hospital, sitting by my sons bed day in day out. Nor did i dream i would be nurse to my son when we are at home administering him drugs every 4 to 6 hours and cleaning up his vomit every couple of hours.
I didn't dream as a girl that one day as a mother a doctor would tell me my son has cancer and that he has a very small chance of surviving.
I could neither have ever foreseen or dreamt, imagined or ever felt before, the nightmare I am now living.

We are home now and I lay beside him in his bed we made up in the lounge so that he is never far away from anybody.
I'm watching him breath as he sleeps and try not to remember the boy he use to be because when i do it tears me apart. Thinking of him how he was before all of this is so sad as he just isn't that boy anymore. He's no longer well, running around, driving us nuts and helping himself to what's in the fridge and cupboards. And I wonder if he ever will be again. I hope with every inch of my being that he will be but I also know the real possibility that he won't. I can't put it into words the torment of facing the possibility of your baby dying before he becomes a man, before he becomes a boy in fact, before he can talk to you about his footy games, mates, things that he loves and hates, before he truly begins to live and love.

When I was growing up i never dreamt that motherhood would be what it is for me now.




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Thursday, 26 April 2012

OMG!!!!

Can't get a damn break here! Took jayden out for a walk and accidentally stepped on his line and ripped out his broviac!!!!!! What an idiot?????
Poor little man. He was so upset. Cant believe i was so stupid! Majorly upset with myself and was absolutely crushed with the prospect of ruining our chances of going home! And absolutely hugely worried about jayden! Nurses came from everywhere to sort the mess out and I've never been so bloody frightened in all my life so no doubt he was too. Had to have a nurse apply pressure to the area and his neck for ten minutes then off to X-ray to make sure no line was left in there or any bleeding. Fortunately all ok. Big sigh of relief!

Doctors were looking at getting another broviac put in tomorrow so another general and another day at hospital. shit was all I could think.
But! There is good news! Doctors rang infection control and they said he could possibly do without his antibiotics and so no hurry to put broviac back in at this point sooooooooooo we can go home tonight!!!!

There is light at the end of some tunnels!

Still peeved he has to go under again and get another one put in because that's huge. But I have to be happy that we get to go home early.

Still waiting in hospital 3 hours later to get the all clear.
I am officially a big dill!
Poor Jayden.

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Wednesday, 25 April 2012

More good news!!

Thanks to a wonderful lady named Pippa from 6PR who has read this blog we have had more good news today. Pippa contacted Optus for us about our phone bills and I spoke with Howard Sattler on radio yesterday as organized by Pippa. Today, thanks to her efforts, Optus phoned us. I spoke to a really lovely man named Peter who said Optus would pay a big chunk of the bills and we couldn't be happier! We love you Pippa!!!! Thankyou for helping and making this possible and thankyou too Howard Sattler. Everyone should listen to Howard Sattler between 3 and 6pm because he's a very lovely man who takes the time to help people in need. We love you too Howard. A million thank you's and much more.


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Having a better day!!!!

Jaydens counts are going up!!! Yah!!! And he ate some food for the first time in ages today!!!!!! Unfortunately he vomited it all up shortly after, but still, he has an appetite!!!!


And we got the cheeky smile back!!!!!
And!!!! We might be going home tomorrow!!!!! Yah! Yah! Yah!!!!



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For Jenny

We have a very dear neighbour named Jenny and her husband mick. They gave me a little phone for jayden as a gift and I wanted to post this photo for them to see.


Thanks Jenny.
He hasn't forgotten you and hopefully will see you again very soon.


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The saying goes, 'A picture says a thousand words', this one is no exception.


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Location:Picture

Tuesday, 24 April 2012

Blood counts

Jaydens white blood cell count is 1.00 today and neutrophil count is 0.03. The norm is between 6-16 for white blood cells and 3.9-10.2 for neutrophils. But yesterday they were 0.5 and 0.01 respectively so we are all hoping that this means he is on the up hill slide to all of this.
He does have sores appearing in his mouth which is from the methotrexate but the doctor told us today it shouldn't be too bad because his counts are on the rise. At least, that's what they are hoping. We 'might' be able to take him home for the weekend but it's a big 'might'. Crossing my fingers and toes that this will happen.
His vomiting has continued and the doctors are a bit baffled as to why its continuing as they have said it should have eased off by now. We on the other hand haven't known any different as he hasn't stopped vomiting since February this year.
I asked them if there's a possibility that it will never stop? But no one can answer that confidently, like everything else, they just don't know. Everything Here depends upon the individual child, what works for one may not work for another etc. same goes of course for the chemotherapy. It solely depends on jayden and how he will respond. Scarey.

On a different note I got an email back from the hospital that 'research nut' gave me the website for in Houston that offers proton beam therapy. Thank you for doing that research, we are now in the process of gathering all the required documents and applying. Hopefully we can have our application faxed off by the end of the week.

He's asleep now. I hope his little body is working hard to get better.

They let us outside of the room today much to his delight. So I wheeled him in his pram to the oncology garden and we examined every rock and leaf until he was too tired to look anymore. He wants to get out of his pram, but knows he can't. He sees the stairs and desperately wants to climb them, but again he knows he can't. I am so looking forward to a day where I see him climb up a set of stairs and climb on a couch and all the normal things he should be doing. We are going to celebrate that big time when it comes.

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I'm home

I'm home tonight, laying in my own bed with my five year old son next to me, snoring gently. But I can't sleep. All I can think about is jayden. Is he warm enough? Is he sad, scared, in pain? I know his dad is with him but I can't help but worry and wish that they were closer. I wish I could just quickly pop my head in his room, give him a kiss on the cheek and know he's ok. I miss my kids dearly and when I'm here I want to be at the hospital and when I'm there I want them with me too. If only we could do all this treatment at home so we could all be together.

I got my days wrong today in my last post and jayden didn't end up having another dose of chemo today, he has it this Friday instead which is day 15, not today. Days just blend in together when living at the hospital and you forget about what's going on in the outside world because that helps you cope, I believe.

Coming home today not just for the afternoon but for a sleep over is beautiful but hard. It's beautiful cause I get to spend some quality time with my beautiful kids but really hard and heartbreaking that my third and gorgeous little man isn't with us. I miss him constantly. I miss him when we are driving in the car and his baby seat is empty, when we sit to eat dinner and he's not at the table in the place he always sits. At night time when we are reading before bed and most of all just seeing his beautiful face and smile in the house with us.
I hope with all my heart that I will be laying in my own bed at night one day, knowing that all three of my kids are sleeping soundly and are healthy and well. I want to be able to walk by all their rooms to check on them at night and them all be there. I want jaydens room to be filled once again with his smell, his breath, with him.
Please god make this happen for me, for our family.
I so don't know how I will cope if this does not come true, I can't bare to think about losing my precious little boy.
I'm having another cry myself to sleep again.... This time, at home. Does this ever get any easier??
No... Will it? I hope so.



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Monday, 23 April 2012

Day 15 vincristine

Today Jayden is due yet another dose of chemo! Vincristine which he had day 1 and day 8. This never gets easy.
He's not very happy today. Woke up vomiting and then had a dose of dphenmphramine (that's how it's spelt in notes but difficult to read doctors writing). It's meant to help him stop vomiting but knocks him out as well so laying back in bed looking very buggared and browned off.
I want to pick him up and take him outside but we still can't leave the room. And not looking like that's going to happen anytime soon either. Damn annoying considering it's not our fault he got the poo bug!
"Poo, bum, shit" as my little brother use to say when we were young.
He's just vomited again and then given a dose of larazapan. Gone are the days i would worry about him having too much panadol in a 24 hour period! He's got that much stuff pumping into him and has had for the last 7 weeks that it's not worth thinking about what damage it could possibly be doing as that just wrecks your brain even further.



Picture of jayden playing with the baby wipes.



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Sunday

I'm having a cry myself to sleep night tonight. Some days it's all so overwhelming you just want to die. You want it all to stop and be able to come up for air. Tonight is the end of one of those days. I still can't believe this is happening to us. For a very small moment when your tucked away in this hospital you start to think of it as normal and that makes it all easier to digest somewhat. Then you get an afternoon like I did and go back out into the real world and it knocks you back into reality and thats when it all comes crashing down so fast it's scarey. You see your friend who has a child the same age who's running around laughing and talking as my daughter informed me and it crushes you like you wouldn't believe. A sudden reminder of what you know you no longer have and may never have again. I laid down with my son tonight and read him books and he's speaking new words as well, but no running, no sitting up even, and not of anything but laying on a hospital bed. I hate this so much it hurts. It hurts in every single inch of my body and it's just shit. It's not fair and it's so sad. Why? Like all the questions I want answered in this hospital no one can answer that one. My poor little man just wants to be a normal boy. I watch him see his brother running around and he smiles from his bed and you can see in his eyes how much he wants to join him. He asks to go out and cries when we tell him he cant and its bloody torture. Layla and Luke came back ino the hospital with me tonight and jayden was so happy to see them. They both miss him heaps and it's beautiful to see them together. Layla couldnt beleive how many new words he has learnt as she read him a book. She is finding it hard like all of us and when she sees others his age she told me tonight it makes her sad. Sad for jayden and sad for us. Luke seems to be taking it in his stride but misses me home. No one has even the smallest of ideas of how hard this is unless they have walked this road which makes it a super lonely road amongst your friends. People you don't know that have walked this journey become the people you most confide in as they 'get it' and everyone else can listen, and read but they will never know or truly understand the magnitude of this pain. I want to sleep now, with tears in my eyes but hope in my heart that I shall wake tomorrow stronger and ready for another day of this life as I now know it......

Sunday, 22 April 2012

Phone bill

My husband and I recently received our phone bills for the period of mid march to April and it's safe to say that we were expecting them to be high considering the circumstances. But what we didn't expect was exactly how high they would be. My husbands jumped from his regular payment plan of $60 per month to over $500 and mine jumped from $140 to $1500. Of course this is because we made more calls than our plan allowed and anything outside of that they bump up the price to stupid ampunts.
When I phoned Optus to talk about it as did our councillor from the oncology ward with a view for them to 'cut us some slack' so to speak considering the circumstances, they declined. In fact there is no policy that allows it apparently. Gone are the days when you could speak to the person who ran the business you are dealing with. Gone are those days where you could speak to that person who an make decisions based on compassion. It's all policies and people employed simply to answer phones but seemingly not able to care.
It niggles me greatly that a huge multi million dollar company couldn't give two hoots about a family that is already suffering enough and won't even consider reducing the damn phone bills under these extreme circumstances .
Seriously, what has happened to our world?????
I know I have far bigger fish to fry than a stupid phone bill but I do want everyone to know that Optus suck and if your considering changing phone companies don't consider Optus.

On a more important front jayden is still in isolation and still Vomiting. Doctors were in today and informed us that he is heading in to the very yucky and scarey stage of all this crap. His immune system is at an all time low but can and will get lower in the next couple of days, and all sorts of nasty stuff can happen from here.
I just want it to end and seem my healthy smiley little boy again. Now THAT, Will be a happy day.









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Stuck inside

Not only did we not get to go home today but we had to move rooms and be isolated. Jayden has a bug and isn't allowed out of his room. Frustrating for him and a major let down. The kids came in with Danny all hoping we could bring him home but nope not today and probably not tomorrow either. Very sad.
He has now started another antibiotic to fight of the bug they found in his blood cultures. Yes there is specific medical terms for all of this but to me all that matters is the doctors know what it is and hopefully can fix it. so that's three antibiotics he is on now and it's no wonder he has diarrhea which they are also investigating. Seems he may have also caught a gastro bug from another patient????
His vomiting has been worse than normal and controlling it hasn't been perfect but they are getting there. He's asleep now from the effects of an anti nausea drug and I am just glad he's not vomiting.
He has a red rash all over his lower abdomen and back that no one can explain as well. Being in here is like all the visits you have to the doctor in a child's lifetime rolled into a short space of time. Insane, yet not unusual for this ward.



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Saturday, 21 April 2012

Hometime

We were allowed home for the afternoon yesterday (Saturday) which was very much needed. They wouldn't let us stay overnight because jayden still requires oxygen at night. The Unsettling thing is they don't know exactly why.
Doctors had also anticipated the side effects of the chemo drug he got on Thursday known as cisplat would be kicking in right about then so they thought it safer we return. Sadly they were right and not long after we arrived home his vomiting started. The medication I had for his nausea I gave him but it didn't cut it and he continued to be sick. So we knew we had to return earlier than anticipated.
My little man took it in his stride and was happy for another drive in the car which use to be one of his favourite things to do before all this crap happened. We got back to the hospital and they gave him an anti nausea drug called larazapan (no doubt incorrect spelling). It's meant to stop the nausea and has a sedative effect. But not for my jayden. It did stop his nausea and made him feel great but there was no sedative effect. he was up till 11::00 pm chatting and playing like nothing was wrong. When I write 'playing' I mean what little he can do laying on his back on a hospital bed. Because he has been so bed ridden for so long he has lost all muscle strength in his legs, and arms aren't the best either. We can get him in a sitting position but he can't sit alone, he needs to be held. He can't hold his own body weight if he was to stand and his head still struggles to not wobble when he's upright.
When we take him home he tries so hard to do the things he use to be able to do and gets really frustrated when he can't. Although this visit home wasn't as bad and I can't help but get the feeling he understands this now to be his normal. Someone who's travelled this journey told me it soon becomes your new 'normal'. And they are right. I try not to think about our old normal as it makes me too sad and instead do what I believe jayden is doing, that is , seeing this as our new normal.
He truly is the bravest person I know and he surprises me on a daily basis with his courage to carry on.

He's asleep now as he had another anti nausea drug at 4:00am this morning and this one did knock him out.

He was funny last night when he stayed awake on the larazapan, chatting to me, laughing, and being silly, it was a real treat. Even though I was tired and every inch of me wanted to sleep I made sure I soaked up every second of that time with him. We have no promise of tomorrow and we know that. Maybe I should consider us lucky for we will make sure that out time together won't ever be wasted and that every moment together cherished.


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Friday, 20 April 2012

A good night

He's having a good night tonight, so far. Apart from requiring oxygen while he sleeps like the night before, he is good. And no temps so far. Last night he had temperatures through the night on top of the oxygen and of course I was yet again a nervous wreck, no sleep for me. But tonight I feel better because my beautiful little man is having a good night. Finally. Crossing my fingers it will continue because if it does we might be able to go home tomorrow!!!!! Yah!!!!


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Wednesday, 18 April 2012

Yesterday we met with the oncologists to discuss future treatment. We had come to a point where we weren't sure whether to continue. After much discussion we were convinced to at least complete the cycle and see how jayden goes, meaning how his body is going to react to all the toxic chemicals he's been administered then re access at the end of the cycle. Because the thing about chemo is everyone reacts differently and we don't get to find out till 5-10 days after all the chemo is put into his system as to how he reacts. So it's a wait and see scenario. Which would be all well and good if it was a parcel in the post and we just wait and see for it to arrive then find out what's in it! But this is a wait and see as to whether he has a serious side affect that could have a possibility of killing him! The only word I can use to explain that is 'shit'.

There simply is no easy answer to all of this or any answer at all to any of the questions we want most, the answers for. We grow up believing that when we get sick we see a doctor, they find out what it is and they fix it. Now our family is in a situation where , sure, they know what it is. But, they don't know how to fix it and there is a less than 10% chance they can, with a trial treatment. The treatment from what i understand ( the combination of chemo drugs) has only been used so far on less than 40 patients in the world and they cant tell us the results of those patients. They also can't tell us if that treatment will kill him or not, nor can they tell us what side effects he will have only give us a list of possibles. It's brain wrecking to live this constant state of the unknown, and made a million times worse because it involves our child. All I want is answers and no one, not even the brightest sparks in the world can answer them.

Every day in here I'm gambling with my child's life. Everyday Danny and I are making decisions that if went wrong could potentially kill him. Everyday we have to take that risk in order to hopefully save his life. It just makes no sense to how life 'should' be and now I'm at a point where I have forgotten what life should be as it no longer or ever will be that way again for our family.

He had a drug called cisplatin injected into his IV line last night followed by his third dose of some other chemo, the name of I can't remember right now and it makes me feel sick thinking about it so I'm not looking it up for the sake of this blog. He's blood counts went down today and he had to have a blood transfusion which seems to be the norm on this ward. Well, at least no one seems to make a fuss of it here so I assume it is.
He's sleeping now. And as I watch him I see him frown, hear him groan and no doubt having dreams that aren't about playing trucks and riding bikes but about being poked and prodded and feeling like shit. My little man has not been given one good break yet and I do wish that time would come soon for him.



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Monday, 16 April 2012

One more thing....

As everyone continues their day to day business you can't imagine what it's like for it all to suddenly stop. Suddenly what your going to cook for dinner tonight is no longer your drama for the day and instead replaced by fighting for your sons life. Suddenly those sleepless nights of your kids waking you up mean nothing in comparison to sitting by your sons bed in a hospital watching him suffer and sick. Suddenly all those minuscule bullshit complaints you have on a daily basis no longer matter and all that matters is your son surviving today. No one knows what that's like unless you walk these very shoes. No one knows what it's like to wish everyday that your only complaint was what to cook for dinner, or that you're tired from your child waking you, or you forgot to get milk from the shop, or you have a headache. I would give anything to have those complaints- ANYTHING. So the next time you think about how crap your life is then think about how much worse it could be and thank your lucky stars you aren't traveling this shit road.


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Day??

I don't even know what day we are on with this nightmare journey anymore or care. Each day blends into one and is only differentiated by my levels of stress due to his levels of pain and discomfort. It makes me feel sick to watch what is happening to him and this apparently is 'the easy bit'. What is defined as hard in this case is yet to be found out and I am so not looking forward to that.
Will I live to regret this? Is a question I often ask myself. I know I am and always have felt very uneasy about this decision. Watching him day in day out slowly deteriorating, his face paler, his body less wanting to move or able to. His eyes scared and confused. And on top of all this they intend to hit him again with another dose of chemo. Will he die from all this? No one can answer that. They will say he could die from an infection though. Is that meant to make me feel better? Or prepared?
I'm so confused and every inch of me wants this to stop. My family is struggling to keep afloat through all of this and little jayden is barely hanging in there.
As my tearful daughter said to me the other day: " I just want everything back the way it was mummy". So do I. Oh my god, so do I.


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Next lot of chemo

His levels are down for the methotrexate and so they have now pumped into him etoposide and then cyclophosphamide, both nasty drugs. I am absolutely terrified for him. They haven't finished putting in the cyclophosphamide yet and I'm sitting at the end of his bed watching him moan in his sleep. The nurse is getting more pain relief and we are all yet to find out if the three drugs they have also put in him to stop any vomiting is going to work. This is so awful I can no longer put it in to words. My precious little boy is now a white shadow of himself. His skin is so pale that his beautiful brown eyes almost look black. He's pink around the yes and just looks terrible. This is not fun. No one should have to see there child go through this. No one should have to sit by their child's bed and watch as toxic drug after toxic drug is injected into their veins. Holy shit I am so not coping with this right now. His belly is extended and they are now calling a doctor to see what's wrong! I'm so scared I'm going to lose him it's killing me. This sucks so bad I hate it! I hate watching this!

Sunday, 15 April 2012

Parcel delivery

Today jayden received a parcel from a Liam O'Byree in Houston USA. His face lit up when we opened the bag to find a present to unwrap. Like all kids he loves presents. And inside was a toy dinosaur. Jayden loves it and is cuddling it as he sleeps while I'm writing this post. I am so overwhelmed by the kindness of complete strangers like Liam. Thank you Liam for thinking of Jayden and thank you for making him smile. It is truly beautiful that there are people out there like yourself that care about my son. Words alone can not express how very much we appreciate it.


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Day three

Today was not the best day. We had a terrible night due to being woken for obs and for some reason not being able to settle every time he woke so we spent most of the night awake. It became evident in the morning though that he was experiencing discomfort from the effects of the methotrexate drug. That disgusting drug rips the lining of your insides from your lips through your mouth down your stomach and all the way out to your bum. His poos are mucusey and black slugde and his poor little bottom is slowly becoming red raw as well as the end of his willy. Even with copious amounts of nappy paste, barrier cream and regular nappy changing its still all sore clearly because what's coming out is so damn toxic. Poor little man was only hanging in there when they gave him a dose of oxicodeine and from then on have been giving it to him regularly. Hes sleeping now.
This is only the beginning I know and it scares me big time. I went home when danny got here in the afternoon , just for a couple of hours but when I left it was horrible. Every time I leave him I feel torn in two, it's something I know I will never get use to.
Spent the afternoon with Layla and Luke watching a video and just hanging out, it's never long enough but at the same time too long away from jayden. Luke drove back into the hospital with me which is always a pleasure. He always knows how to make me smile.
And when we returned jayden was miserable. I just wanted to give him the biggest squeeze but I know he's in pain when he pushes me away so we quickly organized more pain relief.
I know I keep saying it but I can't wait till this cycle ends, i just want it to be over. I just want him not to be in pain anymore and never again.

Friday, 13 April 2012

Nappy changing

This whole process is so scary it's unbelievable and added to it is the simple task of changing jaydens nappy which now requires me to wear gloves because of the chemo coming out. That in it self makes you have to ask yourself "what am I doing?". Mouth cleaning is also absolutely necessary and required four times a day. Thankfully he is getting use to it and let's me do it with not too much of a squabble. He's so well today it breaks my heart that I know he has a huge nasty time ahead of him.
He's eating heaps as well and now after lunch and fruit a chocolate Easter egg!!!! Not looking forward to that all coming up! Hopefully it won't. Fingers crossed.


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Day two

Got through first day now on day two. Doctors Managed to get jaydens vomiting under control and now its not as often. He has woken today in much better spirits. I'm thankfully not such a nervous wreck although no doubt that will change with the coming days. Was ready to stop it all yesterday but onchologists convinced me to see the cycle through. Dreading the coming days. Not sure where I will find the strength but my little man seems to have an abundance of it. How he does it I do not know.


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Thursday, 12 April 2012

2am Friday 13th

I want to stop this now. He hadn't stopped vomiting since shortly after it started. Hes pooing constantly and they ooze out of his nappy quicker than you can clean them up. He's crying. He's incredibly traumatized and it's just crap. So much for side effects not happening for a week and chemo to begin with is easy. Not for my little man. He has started off on a rocky road already and these are just the small side effects! I hate this big time! How can I be doing this to him? Being strong for him is so bloody hard when all I want to do is take him out of this hell!


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I will

I have been in contact with many people who have walked this journey before me and are the most amazing people I have ever come to know. I'm trying to listen to their words of wisdom and remain positive. It is hard when I have watched my mother go through all of this and die in the end. But for my son I will try. I know i need to for him. He needs to see in my face that its going to be ok. I will find the strength to show him I believe. That I believe this will work and that he will be the 10%. I so hope that to be true.

It's started

I can't believe I am sitting by my sons bed while a drug known as methotrexate is being slowly put through his IV line and straight into his wee little body. It's bright yellow in color and within an hour has triggered his vomiting. It will continue to be put into him over a period of four hours. Before this drug he had vincristine put into via the IV as well. Both nasty toxic drugs. They gave us a copy of the side effects on two a4 sheets of paper and the side effects almost fill both pages. What am I doing? I have no faith that this will work yet no choice of another way. And all the while I have to sit here watching my precious little man go through this. No one should have to do this. No one.
He was looking pretty good before and happy in himself, I think he just thinks hospital life is just his life now. I know it feels like it to me sometimes. I miss my other kids so much but when I get home I just want to come back and be with Jayden. Being torn between the two is awful.
I did go home tonight form brief visit before the chemo started to see them and there beautiful little faces but I couldn't stay long because I knew jayden needed me here. Luke came back with me and I love it when he does. The two of us driving back to the hospital with him in his pajamas and cracking jokes all the way. He has such a beautiful sense of humor and always manages to make Jayden smile. He misses his mate and always jumps at the chance to call in and see him.
I treasure those moments where we talk just the two of us in the car to PMH. sadly they seem to be the only times I do get to spend time with him now.
Then we swap with danny and he takes Luke back to go to bed and I stay. Tonight though Danny is coming back as we are both nervous about the methotrexate and it's side effects and how Jayden will handle it.
My gorgeous little man is now asleep. I am so scared of what's ahead of us , of not knowing what tomorrow will bring. Will he be ok? No one can answer that, and that is the most frightening thing of all.

Wednesday, 11 April 2012

Broviac

They called Jayden up about 3:00 and all of a sudden all the anxiety, fear and sheer dread filled my sole. I stood in the elevator with him in the pram and all I wanted to do was make a run for it and take him home. The poor little man has been through so much and no matter how many times he goes into theatre this does not get easier. We have not even started the chemo yet and I am already a bag of nerves. Questioning myself on have we made the right decision? What if I haven't and this winds up bringing his death sooner? What if I haven't and the last few months we spend together are within these four walls with him sick to the bone. This is an impossible decision that no matter what, will never ever sit RIGHT with me but then, neither would the alternative?





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Tuesday, 10 April 2012

Today

Thank you to everyone for your prayers, advice and sharing your own personal experiences and in doing so you have collectively helped Danny and I make our decision. It is not easy to make a decision based on such poor odds and either way we decide we will be forced to watch our son suffer. For so long everyday we woke up thinking and feeling differently. One day we would be sure the treatment was the way to go and the next we couldn't bare the thought of putting him through such a traumatic journey. At the end of the day though we had to decide what decision we could live with. We are not yet backed Into a corner where our decision is made for us, we do have choices as crap as they may be. And if we go with the treatment we still have choices, we can stop, we can decide if he is coping or not but in order to do that we have to start. He's good today and we are all happy, tomorrow brings something else I'm sure but I have learnt that I can only live in the moment. To see any further is too crushing and too much to bare. So today we are starting what has had to be the most excruciating heartbreaking decision we have ever had to make and we can only hope that we have made the right one.


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Back at hospital cont.

So we are back at PMH, arrived here early this morning as required only to find his theatre appointment had moved from the morning to the afternoon. Just about burst into tears after hearing that, as we had him fasting from 2:00 am as instructed so poor little fella was starving. I had to walk away but shortly after the nurse came back and said she had been in contact with anesthetist so he could have some toast and a drink. Hooray some good news. He's due to go into theatre soon to put a broviac line in and have another lumbar puncture. All very scarey again for him and no doubt when he realizes where he is going again he will be very upset. He wasn't happy coming back and didn't want to get out of his pram to go on the bed when he got he and has been very uneasy about the whole return. This is just the beginning I know of a very very frightening experience for all of us, most of all Jayden.


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Back in hospital

I haven't written in this blog for a few days now as we were all busy enjoying our beautiful little man at home. It was busy and tough at times but so worth it. He smiled, laughed and sat up! It was precious! The kids played with him, read books to him and just hung out with him. I haven't seen him this happy since before this nightmare began.





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Friday, 6 April 2012

Thank you

A big thank you to everyone that follows this blog and to those that comment. It means a great deal to our family that we have so much support and it means a great deal to read your words. Thank you to everyone out there for making meals, sending texts and gifts and offering help where ever they can. Thank you to those who keep our other children smiling and thank you for just "being there".
This is a huge and very difficult time for our family right now and I want you to all know that although i may not answer your text messages or comments or ask of you for help i very much appreciate you all.
Thank you

Coming home

Today I made a decision. We were told not so long ago that we cannot go home for Easter or anytime soon because if jayden is on IV antibiotics. And oncology had plans for us to move to their ward on Tuesday and chemo start Wednesday.
I don't even feel like we have even made a decision either way yet and in some ways feel pushed to go ahead. So Danny And I decided that we need to be home to make a clear decision, one that we will hopefully not live to regret. We decided we can only do that if we are out of here. I told our doctor that if we are to go ahead with chemo we need to have sometime at home first. Jayden needs it especially and our family needs it. For there is no guarantee that when he starts this high dose chemo he will ever come home gain.

We are so not sure what to do and I hope by going home it may give us a clearer picture.

In making this decision we have to ask ourselves "who are we making this decision for"? Is it for us? Would we put him through this hell because we can't bare to let him go? Or is it for him? Because we want him to have a Future? And what kind of future would that really be? You only have to google this condition and the future not only is very unlikely but also possibly very grim. The high dose chemo comes at a very high cost with many nasty side effects.

This is so huge?

I am so looking forward to seeing his little face light up when he sees home. All his normal stuff and room. And it will be very very hard to bring him back....if we do.

Thursday, 5 April 2012

The letter

One night recently when I was sitting by Jaydens bed I wrote a letter. I sent it to the newspaper and yesterday it was published. I wrote it out of frustration, sadness and the complete overwhelming feeling of loneliness. I wanted people to know about Jayden. I wanted him to be important for he is so very important to me. And a very small part of me hoped that maybe, just maybe there was someone out there with an answer. Someone that would ring me and say " hey leisl, I can fix this for you". Of course they didn't.
No matter what I do or write or who I write to or talk to nothing will change this nightmare. I'm desperately clutching to hope that someone will but the reality is very clear.
We are in this and nothing will change it. Our life has changed forever and nothing will change that. Nothing will take his cancer away and nothing will make our lives back the way they were a month ago.
I so want my smiley little man back and no matter what I do or say I can't stop wishing for that to come true.


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Are we making the right decision??

I just finished reading a letter from someone who's child has been through the same thing jayden is about to start. She wrote in honest, raw and terrifying graphic detail what happened to her som during the months of his treatment. Eventually the treatment killed her son and she wishes that she had done things differently. This has truly been my biggest fear from the start. My gut feeling has always been to take him home and enjoy the short time that we will have with him without poisoning him and let him have his last moments at home with us instead of in hospital. I am so at a loss as to whether I am doing the right thing. This could all go so horribly wrong and how much can a small little man really take??? How much more are we going to allow him to suffer?? If only someone had an answer for me. If only someone could tell me if I do this, then this will happen. Please anyone out there if you have any words of wisdom please share them with me. I am so confused and so very scared of making the wrong decision for my precious little man. My god I love this child so much and I don't want to stuff this up. Help


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He sleeps




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Thursday night

The oncologist visited us today to let us know Jayden will be beginning his chemotherapy next Wednesday. He's booked in for theatre that day to put a 'port' in so they can administer the chemo. I've never felt so sick in my life. I'm so nervous for him and hope with all my might he's going to beat this. I'm holding on so tight to the hope that he will be one of the 10%. I cannot even imagine losing him and the thought of it kills me.
The kids and danny were in tonight and it was so beautiful to have us all together. Luke read Jayden some books and Layla made him laugh. We all helped to bath him and he sat so peacefully in the tub watching Luke play with the toys with him. I ache so bad to have him home and us all together. I hope that day will come very soon especially for Jayden. He is the one that is struggling the most and I know he would be so happy if he were home.

Tuesday, 3 April 2012

4th April

My little man trying to be a normal boy.



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4th April

Danny stayed last night with Jayden and leaving him to come home is always so difficult. All I can think about is him and this shit situation.  His spewing started again shortly after his toast and continued on till the afternoon so once again one step forward two steps back. 
The oncology nurse took us down to the ward to give us a 'tour' yesterday of the ward and I have never felt so sick in my life.  I cant believe we are going there and I cant believe we are going to inflict such gross and inhumane treatment on our son. How is it that in this century we haven't got a more kinder way to treat this shit disease? He will only just begin to feel good again and they will be injecting him with a substance so powerful that the possible side affects scare the shit out of you. Its just crap! And all for a measly 10% chance. I hate cancer and this situation!
I went shopping for Easter yesterday and I have never been so depressed in all my life shopping for gifts for my kids.Buying pyjamas that I don't know if jayden will ever get to wear and chocolate he will probably never get to eat, little ugg boots that his feet may never go in. Tears welled up in my eyes as I purchased them at the checkout and all I wanted to do was curl up in a ball and sob. I wish so hard that this pain would go away so I could be strong for Jayden and my kids. They know, they are not stupid and it so bloody hard to pretend.
Its so bloody unfair.

Monday, 2 April 2012




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Morning 3rd April

Jayden had the best night since he's been here last night! No vomiting and he ate some toast this morning!!!!! Yah!!!!!


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2nd April evening

Neurosurgeon visited in the day and all ok. Yah!
Had good afternoon and only vomited once and for the first time since we have been here he fell asleep without oxicodeine. Huge improvement. I hope this lasts.

Sunday, 1 April 2012

Hiding from the world

Just took this photo. He pulled blanket over his head and stayed that way. Think he's hoping when he pulls it back all the bad stuff would have gone away. Me too! And bunny!


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April 2nd Monday

Didn't have a too bad sleep last night but the evening started rocky. His day yesterday was same as always spending it on his bed watching tv being poked and prodded every few hours. But by 5 o'clock he spewed every hour on the hour till 8 then half hour until they gave him some oxicodene that knocked him out. Doctors were alerted and his feed stopped in case of surgery and bloods taken. Back to feeling an absolute wreck, consumed with worry. Fortunately, nothing drastic did happen, feed went back on and we are now awaiting news from the neurosurgeon this morning. What a bloody rollercoaster. I just wish for him that he would get a decent break. Not a couple hours here and there but a DECENT break. Where he could smile for a whole day, not vomit for a whole day and just feel good for a whole day.



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