Thursday, 31 May 2012

not well

Its raining and cold, a far cry from when we first arrived. Jaydens not himself today and I'm not sure why. Ive been looking at him all day and he just seems different. i don't know if its me, being super sensitive to his condition or if in fact there is something wrong. he just doesn't look well, and hes been crying a lot today. maybe hes just tired, i don't know, but I'm worried.

He had a CT Scan yesterday at ProCure so he had to be anaesthetised so maybe its that.
It always knocks him around when he goes under. I don't often notice it the next day though but I guess it would make sense. But that worries me even more as he will be under every day, five days a week for 6 weeks. I know its a necessary part of his treatment but I look at him and wonder how his little body is going to manage. He amazed me every day when he had chemo and still amazes me now with his broviac sticking out from his little chest and his tube hanging from his nose. he gets around everyday and doesn't complain about either and i really don't know how he does it.
if he is off today because of being under yesterday then i guess its a sign of whats to come for the next few weeks. I hate that he has to do this but at least i feel like he is in really good hands. the people at Procure are so amazing that i cant say enough good things about them.

I will always wish this were not happening to him, that he was the normal boy he was before all of this.  I sat next to him as he had a bath tonight like always and felt so very sad for him. Before he went in the bath he cried and cried because he couldn't go in the big bath with his brother like he use to be able to. His broviac line prevents him from having a deep bath and instead can only be in a small amount of water. I know how much he wanted to have one with his brother and I hate telling him he cant be with his brother for a bath, its just cruel. The simple things in our lives are so much harder now and I hate that. I so want him to be the little Jayden he use to be.

Layla sat with me while Jayden bathed and we talked about life as we know it now. How it use to be, and how we would like it to be again. She is so beautiful and wise, shes so in tune with her feelings and what is going on and she seems to takes it all in. I worry that she misses me. I know I am here with her but I'm not really with her. My mind is always consumed with Jayden. When I'm sad she comes and gives me a cuddle, but I should be the one who's cuddling her. I know I'm not the same mother to my other kids anymore, I cant and that's not fair either. nothing about this situation is fair.

Luke is really struggling at the moment, I think all the kids are trying to adjust being away from home. Initially it was exciting for them but i think now they are feeling out of sorts. I want to wrap them all up and keep them safe from everything, I wish I could. 

I put Jayden to bed tonight and lay with him till he fell asleep like always. He wrapped his little arms around me and held on tight to my neck. He didnt let go, even when he fell asleep and I didnt want to let go either. As I cuddled him I squeezed him tight and hoped with all my heart that this beautiful little man is never taken away from me. I try so hard not to think about that but its there, always.
My little angel, so innocent and so unawares.

This move has been huge, for all of us. Its a positive one I know, and I'm trying to hold on to that. But no matter what I will never truly be happy again until my little man is well.

ProCure Proton Center

Today we had a scheduled appointment at ProCure at 9:30 but before that we had to pick up our hire car at 8:00. Anticipating the possibility of being late to procure we packed jaydens things and took him with us to get the car. Just as we thought, paperwork took a while and we forgot to take the car seat out of the shuttle bus that dropped us off so another twenty minutes was added on to retrieve it. Fortunately we were only ten minutes late to our appointment at ProCure after a somewhat hairy drive there, with danny behind the wheel forgetting for a moment he has to stay on the right side of the road. Arrived in one piece and greeted by a beautiful lady at the front desk whom asked us to make ourselves comfortable which jayden most certainly did in their marvelously stocked play room. He had a fabulous time there with particular enthusiasm to a potato head man that when a button was pressed on its back it throws his arms, eyes and nose off. Big giggles there, which to me is the bet sound in the world. There was a time once in the beginning where I never herd that sound. Through his meningitis he never murmmered so much as a word let alone a laugh. Then chemo followed and a laugh would slip in every now and then. But now, it's a daily occurrence and it's magic. I want to hear it for the rest of my life and I hope so much that i do.

Soon after playing with Mr Potato head another wonderful lady came in to take us to another room where jaydens blood pressure etc was taken. He knows the drill now and has been super compliant to all the staff we have met since being here. Not long after seeing her Dr Chang came and introduced himself and gave us the run down about proton beam therapy and what was going to happen from here. I don't think I have felt so safe and my son so cared for like i have done since we have arrived in Chicago and met all the medical staff that will be looking after him. Dr Chang made us feel incredibly confident that we were doing the right thing by Jayden and there was no talk off negative outcomes for jayden at all. In fact we are surrounded by people who are positive and optimistic here. I feel completely confident in Dr Chang and his staff and that is one of the best feelings in the world. We met many of the other staff crucial to jaydens treatment and the wonderful man behind getting us here and I love them all. I wanted to wrap them all up in a big group hug and give them the biggest squeeze because they all are so wonderful. The words " we are going to take good care of your son" were spoken on several occasions and each time they made me cry. It is all you want to hear from the medical staff that are caring for your child. Danny and I were both so moved by how wonderful everyone was and how beautiful they were to Jayden. I want to be able to write about every individual person we met today as they are all worth a huge mention but there is so many. All of them were beautiful, all of them were positive and all of them touched our hearts. we are so pleased we came here we now know for sure that this has been the best decision by far that we have ever made. We know Jayden is going to be ok here and that is the best feeling in the whole world.






Tuesday, 29 May 2012

Meeting doctor Goldman

Today was another extremely early start! Jayden still hasn't got use to the time difference and was up and ready to play at 1am this morning! Nightmare! So the day started with our eyes hanging out of our heads. We were picked up from the hotel at 6:45am for a 8:30 am appointment with Dr Goldman. The kids came and the drive through Chicago city was exciting for us all. We arrived at Chicago Children's Memorial Hopital just in time and were greeted by friendly staff. We Filled out the necessary forms and signed where required and then sat in the waiting room. Not even five minutes had gone when a lovely nurse came and introduced herself and took us to a room where jayden had his height, weight , blood pressure and temp taken. She blew bubbles as she took his blood pressure and I think it was one of the first times he didn't get upset whilst having this done to him. She had a beautiful bubbly warm personality and i could tell he like her. She even got a few smiles out of him which is uncommon with medical staff. Not long after we saw her a bubbly, warm, round, kind faced man came in, introducing himself as dr Goldman, "but you can call me stu!" he said. He made jokes with the kids and had jayden roped in from the start. He loved him. I have never seen my son so compliant with a doctor since this all started. He allowed Stu to look in his eyes, opened his mouth wide when asked and gave him hi fives. Jayden stood when Stu asked him to and walked to him while holding his hands then sat on his knee happily. He just loved him, we all did. He is just an amazingly warm, kind and beautiful man. If he was our oncologist I would never have any doubts of my sons safety. He just seems to really care about the kids, I just loved him and don't want to leave now! We talked a lot about the procedure and about jayden and where he is at. Stu made us feel like we were doing the right thing and we felt supported. He was just so lovely it was wonderful. We then met some of the other team, social worker, nurses, family support worker, all of whom were so lovely. They gave jayden a heap of toys and a file of useful information for us. After we left we went to McDonald's which was inthe hospital on the ground floor-funny. Didn't stay long as jayden vomited within a minute of eating a chip. Drove back to our hotel and by this time jayden and the rest of us are fading fast. Jayden went to sleep and Luke and I went out to pick up the hire car. Unfortunately we were dropped off to the wrong centre and i had to call the shuttle bus back, by which time I realized iwas too tired to drive so just came back and organized to pick it up tomorrow. It's now 7:00pm and I'm going to bed. Can't keep my eyes open anymore. Jaydens been asleep since early afternoon and am anticipating another early rise. It's been a good day. We are in safe hands and I am really happy we came. Also, I can't post photos from my iPad onto this blog site, don't know why? So am posting them on my Facebook page: leisl males And on help jayden stone Facebook page.

Monday, 28 May 2012

Jet lag

Jayden woke at 1:30 am Chicago time clearly out of sorts with his sleeping. He initially woke because he had to vomit but once that was all cleaned up he was alert and ready to play. Danny and I both got up with him but by 4:00am we were cactus and needed to sleep. Of course that wasn't going to happen because shortly after the other two woke.

It was a pretty full on day all together to get through as we were all jet lagged and in desperate need of sleep.

I'm really tired now that I'm finally lying in bed reflecting on the day and hope by tomorrow I might be feeling a little more normal. I can't imagine how jayden is feeling though. I watched him today playing with his brother whom treats him the same way he always has. Luke doesn't make any allowances for jayden being sick and I think jayden likes it that way. I thought about how it was before when he was well and how this time in Chicago would be so different if he were, but then of course we wouldn't be here. If he were well he could have joined the kids in the swimming pool which he so desperately wanted to do and if he were well he would have ran down the halls after Luke. I imagined him in my mind doing that and it made me cry. I hope I see that again someday soon and I hope That it lasts a lifetime. I miss that happy little boy so much, that ran everywhere, loved his food and laughed a lot. I try to enjoy the moments I have now and sometimes I do but never can I shake the awareness of what's really happening to him. I know his frail little body is still recovering from the chemotherapy and the broviac line hanging from his chest is a constant reminder that life is not normal for jayden. The constant stares from people as I push him in his pram because a tube is hanging from his nose and tubes coming out from his chest. People know he is unwell, it's so obvious and I wonder what they are thinking. I'm sure it's something like- thank god that's not my child, for that is what I would be thinking. But it is my child and my god it's bloody heart breaking. I wouldn't wish it apon anyone and I wish I could stop it happening to jayden. I go to sleep every night wishing that I could wake up and he be better. I want the doctor we see tomorrow to say to us that it's all been a mistake and he's going to be ok and live a long healthy life. But that's not going to happen. I get up every morning knowing what lies ahead that I will have to watch my son fighting this shocking disease and grab every in ch of strength I have inside to smile and be happy and treat the day and everyone in it as normal as possible so that he will be happy. It's a task that some days is impossible and others just barely bearable . But I have no choice and I do it . I know when I go to sleep at night that the next day will be the same and I can only hope that i do find the strength i need to get through another.

We are due to go to the memorial children's hospital early tomorrow morning to meet Dr Goldman. I have read about him on the Internet and my oncologists has said he is wonderful. I hope in my heart that when I speak with him he will give me some real hope to hold onto for so far no one in the medical profession has. I know the reality of this situation and anyone who googles jaydens condition does too. But i hope that tomorrow will give me the strength to get through another day and another.

Jayden has also got a cold and a cough at the moment but fortunately no temps. He was miserable at times today but happy at others. He's asleep next to me know and he looks peaceful. I hope his dreams are happy ones and free from nightmares. I hope that I can make his life no matter how short it is as beautiful and precious as he is to me. I hope this trip to Chicago will be part of that, a happy time that he will remember always. I know that I shall never forget.


- Posted using BlogPress from my iPhone

We are here!

I wrote a blog entry last night but had trouble posting it and of course managed to lose it in that process. Was too tired to write it again and perhaps still are now but I'm awake, and it's 1:30 am Chicago time. 2:30pm Perth time.
I also had a beautiful photo of Jayden that I took to post and lost that as well. Hopefully while I'm here I shall work out how not to do that.
He's laying on my shoulder in bed at the moment. His little breaths blowing on my arm. He's had a big couple of days and he's exhausted. He's done well though considering how unwell he is and soldiered on through a long two flights.
We didn't get to fly out of Perth airport till midnight on saturday night and although it was way past their bed time the kids were great and happy. Even jayden managed to stay awake and smiling. Not long after boarding the plane and taking our seats Jayden threw up. It couldn't have been more than five minutes after sitting down. I'm not sure what the air hostesses thought but I don't think cleaning up vomit is up there on their want to do list as they made themselves scarce. Which was fine because I'm an expert. His nose tube poked right out in the process of it and I had to ease it back on and at one point I thought he was choking. Of course I was in a slight state of panic but not because I hadn't seen this before, because I had and many times at that. But because I knew that in ten minutes or so we would be 1000s of miles up in the air away from any medical staff and for 8 hours and then again for 15. I couldn't help but think about all the things that could go wrong and managed to not sleep a wink for most of the journey worrying. It was also difficult to sleep because jayden has to be given regular medications down his tube, be attached to a pump that runs his feed which ran out of battery within an hour of take off. I couldn't manage to plug it in not having a universal adaptor on me as they were in our luggage, and it was looking like I was going to have to feed him manually through the tube every half hour to hour all trip. Fortunately a helpful steward found an adaptor a few hours into it and the pump was recharged, I think his incentive was the mention by me feeding jayden this way could make him vomit more.

we arrived in hong kong to muggy, hot weather and really worried about jayden with germs in the airport which was made worse by the sight of people wearing masks. Danny was suffering a shocking case of travel sickness so at this point I couldn't have been more relieved that his mother was with us as he was unable to do anything. We stayed in hong kong airport for a few hours then back on the plane to Chicago for a 15 hour leg. Surprisingly enough this leg was not as bad as I anticipated and the kids slept most if it. Jayden and I had business class seats but we shared a seat because the way they are set up I couldn't see jayden if he was in his own seat and I wanted to be near him so I could hear him if he needed me. It was squishy but nice. I managed to bring Luke up to sit in the other seat next to us and he was very excited and slept great.
We finally set down in Chicago around midday Chicago time, exhausted but happy to have finally arrived. We were greeted by a driver when we got out and driven in his limo to the hotel. The kids were so excited as they had never been in a limo before and neither had nanna. A brand new car seat for jayden that was donated by a lovely person we don't know and will be left at the proton centre after we leave for other sick children to use. The limo had been arranged by a wonderful person who managed to make our arrival as stress free as possible. After arriving at the hotel and getting into our hotel room the kids started. Of course being tired they were whingy, hungry and arguing. But not more than five minutes later groceries arrived and all was better thanks to our guardian angel of a friend.
We are now all in bed exhausted. We got here. We managed to get here without any of the things I was worried about happening and we are safe and sound, full bellies and sleeping. Except for me of course, whom I don't think will ever be able to switch off worrying.
Im going to try and sleep now ready for tomorrow. A new day, in Chicago and new hope.

- Posted using BlogPress from my iPhone

Sunday, 27 May 2012

Friday, 25 May 2012

One day to go

Its 5:00pm and I'm still in hospital. Waiting for oncologist to give me jaydens notes and a letter to take through customs to declare medicines and liquid feed. I don't think I have ever been this bloody tired and worn out. I am so looking forward to bed. The day started off difficult as it followed a full on night with jayden very restless waking a lot. 5:30am rise and its starting to feel like the good old days. Four hours sleep and a bucket load of things to do and really not sure how I'm managing. First up jayden had an audio test which proved that he has already lost some of his hearing with the high frequency sounds. This was to be expected through the chemotherapy but as a parent like everything else that goes on here, you can never be prepared to hear things like that. Seems minuscule in the big picture but everything about my son to me is never minuscule. I feel like its just the beginning of the things yet to come that Will be damaged in his poor little body. At least I will have one saving grace in that we won't be damaging his brain with proton beams. Not long after audio they called us up to do his MRI. When we walked through the doors he knew instantly where he was and what was going to happen. His breath became quicker and his tears began to fall, and within seconds he was in a state. It never gets easy to see your child so upset and not being able to do anything about it. I wonder how all this experience will scar him as a person. He use to be such a social little man but now wary of strangers. It's bloody shit. The aenethesist injected a white substance in his broviac and within seconds he was out cold, and that's when I'm told to leave. Awful feeling leaving your child in such a vulnerable state and trusting people to do the right thing by him they you don't even know. Couple of hours later they called me up to recovery and he was sound asleep on his bed. He had a new feeding tube put in as they had to remove the other one for the MRI. My poor little man goes through so much on a daily basis and I never stop wanting to cry for him. My two other kids and danny came in not long after as the nurses had organized flu shots for us all and they were stressing big time about having a needle. It's almost impossible for me to be worried about what now is such a minuscule thing in comparison to what I have witnessed jayden go through. I hate that I have had to harden to that in order to cope and know doubt do my kids. I'm still waiting, I want to go home. I want to eat and most of all I want to be home with my family. I hope that this trip brings us memories of being together as a family without the worrys of work and everyday life. And I hope it brings jayden the precious time he so truly deserves.

Thursday, 24 May 2012

We are going!

I should be sleeping as I'm so damn tired but my head is racing with a million things to do and think about. I'm hoping if I put it all out there I will then sleep.
We are going to Chicago Saturday morning to begin the journey of getting our little man Jayden, proton beam therapy. This has only been made possible because of wonderful people I have met along this journey whom I now can call close friends and people from the school and community whom have been so supportive in helping us in any way they can and the generosity of all of those people and the people of Perth. Our family is overwhelmed by the generosity of strangers whom have made it possible for us to make this journey and we will never forget your help and kindness.



Jayden is doing well and of course has no idea what all the fuss is about. He had a shocking time at stem cell collection yesterday which is an experience I'm so glad he will never have to do again. We were there all day and most of the evening and very relieved to get home.
So many tests are happening at the moment for him in preparation for him to leave and he is exhausted. We have been at the hospital every morning before eight and am looking forward for him to have a day off.

Today He had his gfr i think its called i cant remember exactly now but i know I've blogged it before when i wasn't so damn tired and knew what I was talking about. I have learnt so much about medical procedures here now, all of which I never ever wanted to know about, but here we are. His GFR means we are here most of the day having bloods taken every hour then half hour I think for four hours. Then he did cognitive testing and soME other thing that i can't remember either now. I so should just go to sleep.
My little man is lying next to me at the moment and thankfully he doesn't sound as congested as the night before, he's not vomiting near as much anymore although did a couple at the hospital today.

He's the most amazing brave little boy I know. Today he endured a line put in whilst being held down, injection. Flu shot. Dressing change of his broviac ( bandages being removed and replaced) and that's no small wiggles bandage being removed off a sore knee- big difference. He didn't mind the cognitive testing tho- that was fun but he got over it quick and just wanted to go home. Later he had his line pulled out, and finally we got to go home. Late again and not getting anytime to do anything.

But in the big scheme of things it doesn't matter. All that matters is getting him on the plane and into Chicago. I don't want to worry about anything else because I already have the most humongous worry any mother could have and that is losing my son.


Tuesday, 22 May 2012

News report

Tonight we were on the news, channel nine and seven but I only saw nine on my phone just now. And I just wanted to clarify that report so if anybody is donating that they know exactly what it is for. This treatment is by no means his cure. It won't extend his life and it won't destroy his cancer. I wish it would. What it does do is minimize the side effects of the radiation he must have as part of his treatment. If he were to do it in Australia with the conventional photon beams he would very likely not graduate from high school, require an aid all through school as he would find it difficult to process things. His cognitive skills would be compromised and he would require hearing aids in both ears. This may not seem too bad to some people but we have watched him battle through brain surgery, survive a very nasty strain of meningitis all of which he has come out of relatively unscathed cognitively and his physical abilities seem fine as well. So we don't want to risk all that with conventional radiation.
If however he goes to America and has proton beam therapy those side effects are diminished. In a lot of western countries they simply do not radiate children under the age of three for these very reasons. So that is why we are doing this. I just wanted to make that clear as I wouldn't want people to be donating without knowing what exactly they are donating for.
We have raised over $30,000 dollars so far and are so grateful for so much support. We are completely overwhelmed by the generosity of friends, family and complete strangers. Thankyou to you all.

The news report may have also added confusion as the account displayed is the trust fund account which we recently were going to close. However we didn't and they are both are still running.

I'm feeling very scared tonight about everything and it was all made so real watching on the tv.
I am very nervous about the trip because we risk Jayden getting Ill simply by placing him on a plane and that would not be good at all.
in fact that would be devastating. I'm taking us away from all our support he in Perth which really frightens me and Im just really nervous about the whole journey. I'm hoping with all my heart that we have made the right decision and everything will be ok.




Because I want this beautiful boy to have a wonderful long, happy, normal life. I don't want him to struggle as he has spent the last 6 months fighting for his life and will continue to do so. I am hoping that when he finishes this protocol which involves another three cycles of high dose chemotherapy with stem cell transplant that he will no longer have to struggle.

He didn't get his stem cell collection done again today as his counts are still low so tomorrow we are back in at 7:30am again. We had to stay at the hospital for most of the day though with other things to be done like his GSSF (think that's the right abbreviation?) needle in the leg which he gets everyday to help encourage his counts to go up. Long gone are the days where we use to worry about the immunization needles our kids had. For now it's a daily occurrence and it sucks big time.
His tube that goes down his nose had to be moved back into his stomach from his jejunum because good news is he hasn't vomited for 24 hours! First time since before March. Amazing!
That took ages and he was screaming through the whole procedure.
Honestly I don't know how he manages, although I'm not sure he does. He wakes up a lot in the night screaming, and previously we thought it was pain but now we know it's not. He has nightmares and they are very intense at times. I'm not surprised though as his days are spent in the hospital and it's not fun for him there most of the time. We spent a bit of time outside in the garden at the hospital today which jayden enjoys and here's a photo of him there near the fairies he loves to look for.


As we left the hospital today I saw a couple going in with the coordinating nurse that does tours of 3b for parents who are about to enter that hell. And it took me back to when we had our first tour and how damn scared I felt and sick to the stomach. I looked at the woman and you could see in her eyes she was feeling it too. When u get the news your child has cancer it is so devastating its hard to comprehend. Then not long after get shown through the ward that your son/daughter will be treated. As you walk past the rooms in the ward you see all the other children in similar shoes, the signature tube in the nose, no hair and their exhausted parents sitting by there beds. Its a whole different world in there that no one wants to become a resident.
I thought about that woman as we left the hospital and wish like for all the families suffering in that ward that I could change it for her. I know her pain as so do all the other parents there and it's something you would not wish upon anybody.

Monday, 21 May 2012

My little man

I'm laying on the sofa bed between my two beautiful boys as they sleep and I should get up as I have so much to do. But i don't. I want these moments to last forever.

Not long before they drifted off i read them books and made them laugh (the best sound in the whole world!). Its times like these that are so precious yet I'm struggling to truly enjoy them as I should. The constant feeling of sadness that i may lose my son far earlier than should ever be sometimes leaks in and spoils what precious time we have. I sit and play with him but all the while conscious of his condition . I watch him crawl, hear him talk but all the while thinking he may one day be gone. It sucks to not really be able to enjoy exactly what I should be enjoying and that's time. Time to be together with him, really together, without thought of anything else but that moment with him.

When I cuddle him i want to squeeze him so tight and never let him go. But he soon gets over it and pushes me away so he can do stuff and things. No doubt he thinks I've become an overly protective, clingy mum (although i think i always have been-just more so now). When he's in hospital thats the mum he wants, because he's often scared and unsure and most of the time feeling like crap. But when he's at home he wants to be him, as much as he can be. He's crawling around now so is into everything again, as Layla found out when he emptied her bag of lip gloss and all cool girlie things out then preceded to dig the lip gloss out of its tube with a pair of her nail scissors. Layla Was not impressed at all and growled at him and for a moment things felt just like they use to be.

I try not to think too much about how things use to be because i wind up wishing they still were and of course it never will be. And that hurts like hell.

It hurts like a sharp stick thats been taken out of a hot fire and straight into my heart. It burns when I think too far ahead and it crushes my sole when I imagine what could be and what once was. I know I shouldn't cause it's sole destroying But its so bloody hard not to.

Tonight as i lay reading the boys a book Jayden lent in and gave me a kiss on the nose, and that burning feeling was there, deep, and hurting every inch. I don't know if he's aware I hope that he's not. I want to be able to always enjoy these moments with him and not be sad. I want to believe he will be here for a long time. And I want to be able to take the advice of a wonderful man and his truly inspirational wife who visited us the other day and told me not to look way ahead into the future for it will spoil what is now and that I don't know what is ahead so to enjoy today.
I know that's what Jayden is doing for he has no idea what may lie ahead for him. he just lives for the now. A wise little man he is indeed whom I'm so very damn proud of.



Sunday, 20 May 2012

Bank Details

This is all so confusing I know and I do apologise, its made so difficult because of the rush to do everything in time. Initially we were needing to raise a humongous amount of money so the best way to save to do that was to set up a trust, hence the first bank details at Wespac bank. Now however we still need to raise a big chunk of money but not so big and we have closed down that account and just kept the National Australia Bank running. Yes, I know its all a bit of a mess, bit like my life right now, but i am hoping it will all come together in the end. Counting down to Saturday and hoping visas, medical certificates,  and most of all Jayden remains well and we get a clear result from MRI on Friday! Nightmare, and not sure how we are going to pull it off but damn it, we are going to try bloody hard. Am flat strap along with a lot of other people to get this money raised and get Jayden over there to Chicago in the time frame of the protocol. Fortunately we now have our oncologist on board so that has helped at the medical side of things.

Anyway the official Bank details are as follows and I promise I will not change them again:
Bank: National Australia Bank
275 Canning Highway
Palmyra
Western Australia 6157
BSB: 086426
ACCOUNT NO: 489274217
SWISS CODE: NATAAU3303M

OK, news on Jayden:
We went to hospital at 7:00am this morning after him fasting from 2;00am for his procedure of stem cell collection. We were there until lunch when they told us the results from his bloods taken in the morning show that his counts are not high enough yet to do the stem cell collection. SO, back in tomorrow same time! Absolutely nothing is easy in this damn journey. i swear its so bloody hard at times that I feel like my emotional capabilities are just going to completely explode.
Hes asleep now, none the wiser of the dramas going on around him. There are some mercies in this journey....


Saturday, 19 May 2012

Mission impossible

We are due to fly out to Chicago on Saturday night for proton beam therapy and I'm absolutely stressed to the eyeballs as to how we are going to manage to raise a bunch of funds to get there, stay there and live there for 6-8 weeks. We are hoping for the generosity of people and nothing short of a miracle.

Fundraising has been difficult because at first we were going and heading to Houston. Then we got the massive estimate and the bad news from our oncologists that it wouldn't meet the protocol time frame. Then research nut found us a place virtually overnight that would meet the protocol. So now today it's officially confirmed in writing and we are meant to be going this weekend! Nightmare to get organized and even though I have been home with my family I have hardly spent more than a couple of minutes with them. Nobody is getting a piece of me and we are all feeling the stress of trying to pull off something that seems completely impossible. At times I feel like giving up because it seems so hard but then I push on because I want jayden to get a good shot at this. There's no easy answers to all of this and that's what makes it so bloody hard. The only one thing I know for sure is I can't do this alone and I'm simply not going without my family. But besides that I have no other certainties. I don't know for sure if I'm doing the right thing, If jayden will be ok or if indeed we will all be ok. The fund raising side of things is huge! How nice would it be to just have $60,000 dollars or so just lying around?? Then it would be a no brainer. But I don't and nor do most people in this world. But what I do have is hope. Hope that this is the right thing. Hope that jaydens MRI this Friday is clear. hope that we can pull this journey off. And most of all and always hope that he is the 10%.

If you've been following this blog for a while you would have probably noticed the discrepancies in the fundraising accounts on the Facebook page that research nut set up for jayden. First there was a foundation account then a personal bank account? Confusing i know. The reason for this is in the beginning dear friends of mine diligently set up a foundation account first for fundraising but I was unaware neither myself or my husband would be trustees to it which makes it difficult to access funds and necessary to go through a third party. However it is legally sound and any money going into it can only be used for Jaydens treatment which is also fine because that's what it's for. However for things like taking my kids with me and their flights I can't use this money for and that of course is equally important to me. But anyway it's all good. Both accounts that have been posted are indeed for jayden at the end of the day. If anyone can help and contribute to his treatment or for us to get there then either account is fine. We really need your help and would appreciate it greatly. And if for any reason at all we don't go then leave your contact details and your donation will be immediately returned.

So that's been most of today. Trying to sort out a plan to get things happening with the help
Of many beautiful people in my life that I love very dearly.

Jayden on the other hand has had a very cruzy day hanging out with our neighbor and been taken for rides in a new buggy by his brother that was given to us via a voucher from an extremely generous friend.
Here's some pics of how much he has enjoyed it



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And i just wanted to add this last one of jayden and his brother looking at each other over the neighbours fence.




I look at this picture and hope with all my heart that these two beautiful boys get to grow to be the mates they were born to be, to kick a footy at the park, go to the movies, talk about girls, cars, share a beer, bitch about their wives, play with their kids... All of it. I hope with all my heart that they get to experience the relationship they were meant to have, for that is how it should be.

Friday, 18 May 2012

Pics from jaydens birthday

Lego man eating ice cream cake


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Layla and Jayden



Playing with fabulous balloons!









Finally coming home to spend the rest of his two year old birthday at home! Yay!!!!

Happy Birthday Jayden

Jayden turned two today! And even though we had to spend most of it in hospital the nurses and staff made it as special as it could be and Luke, layla and danny were there so we were all together to celebrate. I dont think jayden really understood all the fuss but was certainly really excited about all the presents and a little overwhelmed by all the attention.  Thankyou to all you wonderful people who bought him presents and wished him a happy birthday and to all the staff at 3B that made his day as good as could be given most of it was spent in hospital.
Good news is though we got to go home late in the afternoon and he is now sleeping soundly in his bed in the loungeroom with dad and his brother luke with me to join him later after writing in this blog.
I really should be asleep now as I am exausted and lack of sleep certainly makes this whole process far more difficult to bare.

Its difficult to explain how hard exactly it is and I have realised most recently that it cannot be explained, nor understood. How can an outsider understand the intense emotions that run through your mind and body second by second every day and the constant worry and grieving for your son that never, ever stops. Every second of every day I am worrying , thinking , trying to work out ways to cope, and all the while watching my son ill, and knowing that I could very likely lose him at the end of this long devastatingly difficult battle.

While this goes on in my head on a daily basis I have no room to emotionally make sense of anything else around me. The slightest thing that tips the scale of my already completely off balance emotional being causes huge cracks in my ability to cope and I simply fall apart. And it wont be because of the reaosn that it seems but in stead a load of emotions that I have kept at bay in order to cope with every day life that will suddenly surface in a huge rush like a volcano erupting when one simple thing doesnt go right. Today was an example of that.  I dont have control of anything that happens to my son on a daily basis and thats hard,  and most of the time at home I have no control either. Im standing on the egde of a cliff most off the time in my head and trying desperately not to fall off. I have beautiful friends around me trying to do the right thing but not knowing exactly what that is. Neither do I sadly.  But I do know i dont want to fallout with any off them and I think and my husband and I have decided that we need to try and do this as much as we can on our own. But Firstly I want to take the time again to say thankyou to everyone who made huge efforts in starting up the fundraising for our travel for jaydens treatment. I had no idea of the legal requirements for all of the setting up however. We are therefore going to try and fund it ourselves and whatever donations have been made so far will add to that. So thank you to everyone who did donate, it is truly appreciated and will be used to help us get Jayden the best treatment possible.



Thursday, 17 May 2012

Temp

Jayden woke early this morning grizzly, upset and spiking a temp of 38.5 which is when we are told we have to return to the hospital. Absolutely gutted we packed the bags and got organized to go in. Luckily my dad was around to stay with the kids whom were still sleeping. Just as we left Luke however woke up, blurry eyed and wondering what was happening. I so feel for him as he is missing out on so much of my time and I can see his disappointment when yet again he has to say goodbye to me without really knowing exactly when I'll return. I want to scoop him up and keep him by my side through all of this but obviously that's not possible.
Leaving him behind with his sad little face we set off with jayden to PMH. We were admitted to the same room as before and the feeling of disappointment in being back was overwhelming. jayden seem to take it in his stride but Danny and I felt as awkward at being back in this room as a fish out if water. We are all just not meant to be here. It doesn't make sense and simply never will. Jaydens temp got higher as day went on and he was administered a broad spectrum antibiotic to cover him until the blood cultures come back and they know what exactly is causing the temp. They gave him some panadol and his temp has been pretty good ever since. So now we are here to stay for the night and not expected to go home again till the weekend at the earliest.
Bummer. So jayden will be spending his two year old birthday in hospital! Major bummer.
Good news is and totally unexpected is my amazing friend research nut has managed to get us a place in Chicago children hospital for jayden to be treated in time. She rang me this morning as we were heading to hospital and completely took us by surprise. So we are hoping this can be pulled off if we are able to raise the funds.
It's all a big turn around from yesterday and I'm still getting my head around it as its happening fast. Hopefully it works out and we can breath a sigh of relief.
I'm so tired now but before I go a big thank you to so many people who are working so very hard to help us give Jayden the best possible chance of a normal life. A thank you to old friends who have been helping and supporting us from the beginning and to new friends whom I am so blessed to now call friends. Thankyou to all of you.


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Wednesday, 16 May 2012

Pic




Layla and jayden

Without words

Its hard to believe sometimes as to how hard this journey is. Its virtually impossible to put into words and it never gets easier. Today was no different.

We had to make the decision that we never wanted to make from the start and that is, to do radiation. Our oncologist spoke with us today and emphasized how important it was to not deviate from the protocol as we could lose valuable time and jaydens survival would be at risk. We knew that we were cutting it fine to get proton beam therapy but we never really knew how fine. The first set back was this morning when we got the estimate from MDAnderson of $333,000US dollars and I knew then that we were not going to make it. And of course the phonecall last night where doctor gene told me basically not to bother and also believed that it could be risking jaydens recovery. All of which of course is shit because we really have no choice now but to go ahead with radiation.

So the media has been cancelled and there will be no fundraising.
For a very small moment I was excited that I was doing something and felt so supported by so many beautiful people around me helping. And I felt like we were going to make a difference for jayden. And I was busy. Busy thinking about it. Busy researching in any spare time I had. And now nothing. Today i felt like had been hit by a truck and fell into a hole of complete despair. I did curl up in a ball today and cried. Harder than I have cried in a while and i wasn't strong, or courageous. I felt completely helpless.

On a lighter note I am laying on the sofa bed at the moment with jayden curled up by my side and Luke on the other. Danny is laying next to us on the single bed and would you beleive all three of them are snoring. So loudly are they snoring that They have made me completely lose my train of thought but that is probably a good thing.

And I should join them.

Today jaydens counts were checked when we went to hospital and they are on their way down which means he won't be getting stems cells removed on Friday his birthday. Which is a bad thing in one way because his counts are going down but a good thing that he won't be spending all day in hospital on his birthday. We will just have to go in in the morning for bloods. Yay.

Really can't write anymore as the snoring is getting louder.
I have no more words for tonight.


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Tuesday, 15 May 2012

Roller coaster

This journey is not only hell but with it comes an emotional roller coaster ride, one that I wish I could get off.
I woke this morning feeling not much better than the day before combined with the lack of sleep from jayden having a difficult night. A friend said to me tonight "you will forever sleep with one eye open" and she is so correct. There is no real sleep for me any
More.
I received a phonecall from a lovely lady I met through this blog this morning who took it upon herself to contact the media on our behalf and rang me to give me the heads up that they would be ringing me, bless her. Shortly after I got their call and soon after that they were in our living room with a camera and interview under way. It was daunting, as well as a little intimidating at times and I don't think I've ever felt so vulnerable. Allowing people to see our lives is not something I expected we would do but know we have to in order to help jayden get the best shot at killing this monster. After the interview I was feeling better about the prospect of things looking good. In fact I even had a short moment in the evening when jayden had gone to sleep and I sat with my son Luke reading his book when I actually felt happy. I recognized the feeling straight away as foreign and realized how long it has been since I felt that way.
Of course it was short lived. After everyone went to bed I got back on the computer and read my emails. I have sent so many off to different doctors over the weeks seeking advice from all over the world and for the first time I got one where the doctor offered to talk to me if I wanted to speak with him. So I did. I rang him thanks to the time difference in washington. His name is gene and he works as a pediatric oncologist and I spoke with him for over an hour. I'm always hoping someone can give me a positive spin to this dreadful disease but the fact of the matter is there isn't one. He put it to me like many others that proton beam therapy won't give jayden any better chance of survival and the chances of him living long enough to experience the long term effects of radiation are so slim that it would seem unnecessary to take your child to another country to do it. I use to love people who are brutally honest but now I wish everyone that i speak to wasn't. I wanted him to give me hope but he can only tell it like it is. And how it is sucks.
Two of my beautiful friends set up an account for jayden today so people can help us to get the proton beam therapy we are seeking. It's at wespac bank account number: 948699
Bsb: 036000 and the account name is: jayden stone foundation.
I know it's a long shot that he will be in the 10% but if he is we want him to have a good quality of life.
This is all really difficult especially asking people to help. I wish that it was for a miracle cure but a better quality of life is all we can ask for. I wish it would promise him survival but it won't. I wish I could ask for my life back as it were and I wish that I didn't have to only be able to hope that he's going to be ok but actually make it ok. Isn't that what we are meant to do as parents? Make it ok? I hate that when he looks at me and he's sad that I can't promise him it will all be ok. That mummy will make it better. Because mummy can't. She can't do shit about it and it sucks big time.
I asked the doctor I spoke to how quickly the tumor would grow back after treatment and he said 6 to 18 months. I asked how soon after that would he pass away and he said within a year. So there is a 90% chance he won't make his 4th birthday. So now I go to bed yet again with tears in my eyes and the very shit knowledge of how truly crap this monster disease is.
I'm on the downhill bend of this nightmare rollercoaster and I just want to get the hell off!

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Monday, 14 May 2012

More decisions

I don't even know exactly what I want to write in today's entry. I started to a couple of times but my head is such a blur at the moment that it's difficult to decipher what's worth writing down and what's not. Today has not been a good day in that Jayden is still vomiting a lot and the medications we have for it don't seem to be doing much at all except make him feel weird. Because he is constantly attached to a feed it's difficult for him to do much for any length of time and that's frustraing for him but I did managed to get him out for a walk along the river with the pump tucked under his pram. He enjoyed that but was also pretty happy to get home. Small outings seem to really exhaust him now.
I really struggled today as the timeline to decide on what to do with jayden shortens. I feel like we are back where we were when we had to decide about treatment. Making a decision about your child's life is no easy task and extremely scarey. I just can't put into words what a nightmare this whole situation is and how the simplest tasks now Seem so huge when bearing such a major weight on your shoulders. I just wish I had a crystal ball and knew what was the right thing to do for jayden. I'm frighten to take him away from his home and family for 6 weeks in case it's the last 6 weeks of his life and he won't be with his family. I'm scared if I take him away something may happen to him while we are away and we are not all together and so many other things are going through my mind about a journey overseas for treatment. And if we decide to stay and do the treatment here then I can't even think about all the stuff I'm scared about then. I had a day today where I just wanted to curl up into a ball and cry and for it all to go away. I know people may think I'm strong and getting through this well but I'm not. We don't have a choice and we are getting through it because we have to. I couldn't find my birth certificate today and it bought me to tears. But it wasn't about the birth certificate I'm just buggared, exhausted and browned off. I'm exhausted watching my son struggle and trying to keep it together doing it. I need sleep now. I want to write more but the words just aren't there. I feel like I'm 'done' today and we are not even half way.

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Sunday, 13 May 2012

Mothers day

I wasn't looking forward to mothers day today and I'm not sure exactly why but I guess it's just a reminder of how different life as a mother is for me now. But when I got up my daughter had decorated the kitchen with balloons and photo graphs of all the Kids and made me a beautiful card. She put a big pink cushion on my chair at the breakfast table and made me toast with loads of Vegemite just as I like it. Luke had painted a beautiful picture of me from school and a gorgeous card, all of which made me cry. We so take our kids for granted particularly their health and forget sometimes how truly precious they are. I have been so busy with jayden that I know I have slipped with my time and energy for Layla and Luke. They reminded me today that they are there, that they love me and need me and growing up before my very eyes. So even though no gifts were brought as there is no time in our lives now to do those simple things it was a fabulous mothers day. In fact a mothers day with more true meaning in it than I have ever had before.
My poor little jayden was sick for most of the morning which was crap for him and shit to watch but by the afternoon he perked up a little and not as many vomits. We went for a walk to the park and he was crawling on the ground


And extremely happy to be outside.

Layla and Luke entertained him heaps during the day and lots of giggles were to be had.



It is so nice to have my family together i miss that more than anything when we are at the hospital. I am so not looking forward to going back. We have to return on wednesday to get his blood taken to see if his counts are going up and if so they will book him in to ICU on friday, his birthday, to take his stem cells. Crap way to spend a birthday! Really nervous about that as its another procedure and it all just really sucks. When we get to come home for a short time it feels like its over for a while but then you get quickly reminded that we still have an awful long way to go. I watched him today and he looks so different from the little healthy boy I knew. His face so pale making his big brown eyes look even more darker. And his once podgy frame now thin. I watch him sitting in his pram just gazing at times and wonder what he is thinking. I hope that his experiences at the hospital are not in his thoughts and I hope that he can feel safe once again. I know I will be crushing that feeling once again when we return but I can only hope for now that he is happy. He seems happy except buggared. He's frightened when he is vomiting and looks at me with fear in his eyes while it's happening but he is coping. He is the bravest little man I know and I am so proud of him for hanging in there. There is change in him, he's more teary than he use to be and more fragile and far more cuddly than he ever was. I do know he's frightened inside that brave little face and I hope that one day he will be the strong chubby fearless little man he use to be.

We finished the evening off with a beautiful dinner made by our precious neighbour Aoife and all of us having a laugh around the dinner table as we use to do. Only now we are all well aware of how precious these moments are and how possible they can be taken away from us. 'We have no promise of tomorrow' a wonderful wise mother who knows my pain all to well said to me once and I think all of us sitting around the table tonight knew that.
So today, mothers day was the promise of hope that we will see tomorrow together and the next day and as many days as we can hope for.


Saturday, 12 May 2012

3:30am

It's 3:30 am and jaydens vomiting is worsening. I can't seem to get it under control with the medications the hospital gave us and i don't know what else to do. Yesterday morning he was vomiting up small amounts of blood which although was not a huge concern to the staff at the hospital when I rang, it was certainly worrying to me. Doesn't make sense that's it's ok for a two year old to be vomiting blood.
Last night it peeked in the evening and I ended up having to sedate him with medication they gave us but that didn't even completely cease it. He still vomited a couple of times and now that it's worn off he's started again. I've given him more meds and another sedative and he's sleeping for the moment. Really worried that he will never stop vomiting.
I wish they would investigate why it's still going on. It can't be just the chemo because he was vomiting well before that started and well after it has supposedly worn off.
I'm confused, tired and extremely worried. I feel I will have to take him back to hospital and I so don't want to.
That's not how I imagined spending mothers day. Although I never imagined spending mothers day with a very sick child. I'm not excited about it for the first time since becoming a mother and I'm not sure exactly why. I think it's just beyond my emotional capability to be excited about anything. All I want is jayden cured and well again and beyond that I have no room or place for any other emotion or thought. I just want this whole year gone and us at the end of it with a cured child. I don't care about mothers day, party's or any other celebrations because I am not in that head space.
I'm listening to jayden groaning in his sleep as I write and that's my life now. Not a celebration but a journey that for every second of everyday is just getting through, just hanging in there, and just keeping it together in order to reach the end and the goal that we are hoping we will achieve. And then I will be able to celebrate, and then I will have the best mothers day of all. But until then, today is just another day that we will get through second by second.

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Friday, 11 May 2012

After midnight

It's after midnight and I have already cleaned up three vomits, poos and given meds. I look at him as he tries to get himself back to sleep and wonder what he makes of it all. I know he must wish he could stop being sick as it is agonizing to watch let alone be the one doing it.
But how confused must he be? I wonder if he remembers what it was like to be well and no hospital visits. In some ways I hope he remembers those times but in other ways I don't. I want him to remember so that should he pass away he will take with him the good times, and there were many. And. I don't want him too remember because I worry it makes him sad. I know he watches his older brother play and wants to join him, you can see it in his eyes and body language but he knows he can't. He tries to be well and normal but his frail little body won't let him. He had a bath tonight and he was looking forward to it and wanted it but when he got in he just sat with his head hanging down. I wondered what he was thinking then or was he just desperately trying to fight off an urge to be sick or indeed just feeling the shit feeling that comes with having chemo and your blood counts going low. When we got him out he had a big cry but I wasn't sure why, was it because we got him out of the bath? Changed his nappy or was it simply a need to express how shit he felt and how frustrating this whole situation must be? Fortunately we have Layla up our sleeve whom always no matter what knows how to put a smile on his face. He adores her. She read to him as always and he watched and listened in awe to her every word. She is wonderful to him. I asked her tonight what she thought was the worse thing about this whole situation and she answered: everything. There was no one thing for her and i know that goes for all of us. Because its all shit. Jayden being sick, our family turned up side down, mum and dad not being here at times when they would normally and the list goes on.
He's asleep now and I should be too in order to be ready for the next vomit. Luke is laying next to me on the sofa bed that's next to jayden. He's having a hard time too. He told me tonight through tears that he wishes he was sick because no one looks after him anymore or cares about him. This is not the first time he has expressed this but other than assure him That i love him and care about him just the same I know he isn't convinced. I noticed before i went to bed that he had drawn all over one of the sofa arms in a black permanent marker pen. I cant get angry with him about that as its so obvious as to why he did it. . This affects us all as I've said before but to what extent? just as the side effects or result of jaydens treatment i will never know. I will never really know how my other children have truly been affected by this and how it will alter their development into an adult. I don't know. I worry about them but feel guilty that I don't worry about them as much as jayden. I know that jaydens concerns consume me more than anything in the world right now and that everything else is second. I wish I could be the same mum to my kids as I was before but I know I can't.
I'm sad for them but can't do anything about it.
I wish that I could make it up to them, to all of them. To somehow change how shit this all is and make it better for everyone.
Wow, it's so shit it hurts thinking about it. So I'm going to try and stop and go to sleep, something that's so foreign to me now it's ridiculous.
What I want more than anything is to go to sleep and wake up and all of this a very bad dream. Wouldnt that be good? Absolutely.

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The good old days




Was just about to go to sleep and couldnt help myself but look through some photos of how things use to be and wanted to share them.
sometimes I forget about the precious time I had with a healthy little boy because I am so consumed with a little boy that is so far from that boy now that its frighteneing. At some time in our lives we all wish we could turn back the clock. This is certainly that time  for me.

Going home again!

Jayden and brother Luke in the car going home!


We are home! After he had his vincristine in hospital and nausea meds we had the all clear to leave. Not without stress of course. Before we left I had to sign forms to authorize his next MRI and lumbar puncture and forms for when he comes in on Friday to do stem cell collection. So for a small moment I was able to get excited about my little man coming home with us, only to be quickly reminded it is not over. In fact, far from over.
Sometimes it feels like its NEVER going to end and in a big way, it won't. Our lives will most certainly never be the same and that includes all of us.
He's very tired. Went to sleep very easily when he got home after playing with Luke and Layla and his food at dinner time. Vomited twice and then I gave him his meds and he went to sleep.
I am exhausted and although I want to write more I just can't. Very much need to sleep.
Thankyou to everyone who have text, emailed and left messages on this blog. I appreciate it all, you are all wonderful.
Thank you

Thursday, 10 May 2012

Having a bath!




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Having a crap day gone..

I just realized I have deleted accidentally from my blog site one of my best venting sessions ever. No doubt I will have another...

Thursday

Jayden had his cisplatin last night and consequently vomiting quite a bit today but I have to say its not as bad as the first cycle, probably due to the fact he was so ill to start with then. He is due vincristine tomorrow and then hopefully if all goes well we can take him home for a while. We had our meeting yesterday with the radiologist and we need to tell her by Wednesday what we are going to do. Both danny and I are still not sure what we should do given that jaydens tumor is so aggressive and no one really knows what exactly will cure him. The radiologist told us that the side effects he will have wont be immediate but over time the will surface. He will require hearing aids. He will have difficulty processing things such as mathematics and other things that require problem solving. He won't be able to do puzzles for instance and will require an aid at school. He's unlikely to graduate from high school and even though should be in a mainstream school will be at the lower end of the scale. These are the side effects that are most common and of course there are others. We are told that the tumor has a 50% chance of growing back in the exact same spot as it first grew so the radiation will be focal radiation where the tumor was in the posterior fossa part of the brain. It's hard to take in all these percentages and then make a decision. And what about the other 50%?? I wrote to a doctor at St Jude's in America which is a ,well known children's hospital that deals with more ATRT cases than most hospitals and asked him what he thought about persuing the proton beams as opposed to radiation and he wrote back to me today and advised me that we should pursue the proton beam theraphy. In most countries they dont do radiation on children under three because of the damage it can cause to the developing brain which as said before is not known until sometime later. I also spoke to the lady that is looking in to getting us an appointment and then treatment at MD Anderson in Houston and she assures me that they could treat jayden in time as per his protocol if we could get ourselves over there. Part of me is very excited about the opportunity of giving him a really good shot but another part is scared the hell of not being able to make it possible. we are taking one step at a time and thanks to the help of many of you we are getting things together. Our biggest hurdle will be the finance and we are waiting to hear exactly what that amount will be. Jayden is sleeping now and he's managing. He truly is my hero. He amazes me everyday with his strength and his ability to still smile through all of this crap. I have no idea where he gets his strength from but it is truly heroic. I stayed home with my two other kids last night and as always couldn't stop thinking about him. He was with his dad and I know he was fine but I missed him terribly. At home I use to be scared to be in the house on my own with my kids, but not anymore. I am already faced with the most scariest thing of all and that's losing my son, nothing can scare me anymore for nothing is more scary than that.

Tuesday, 8 May 2012

Proton beams

thank you to everyone who posted comments on my last post. When I woke up yesterday and read them it made for a better start to the day. I feel like I am on an emotional roller coaster most of the time. One day coping, the next day not. And when I get to read positive messages like I received yesterday and many times before when I'm on the downward ride it really helps. So Thanks you. Jayden received more chemotherapy yesterday, a repeat of what he had the day before. He has been vomiting again but not as often. He had a blood transfusion but otherwise managing. He is due cisplatin today, the dreaded spew chemotherapy and we are definetely not looking forward to that either. Spoke to oncologists yesterday and he suggested we do another round of chemotherapy if we weren't going to do radiotherapy. I certainly don't want to do that. We are definetely going to do something but getting it all organized is what's most difficult. Thank you all for your input about proton beam therapy. We have been in contact with MD Anderson and received confirmation of an appointment but no date yet. We also contacted South Korea and they too have written that jayden is a possible candidate but no appointment set yet either. What I haven't taken into account is all the other stuff we have to do as well and is so difficult from a hospital room and limited time at home. Visas? Passports? And most importantly funding? Part of me wonders if it would just be easier like the oncologists has suggested, to do radiation. I wouldn't be away from family and friends for 8 weeks and the cost is phenomenal. But then the other part says: what's 8 weeks when we could get years of a healthy son? And how do you put aprice on that? I'm confused to say the least and as written before, well and truly fed up. We have a meeting with the radio therapist today and I know she is going to give us a week to decide. I wish I knew the right answer.

Sunday, 6 May 2012

Still waiting for methotrexate levels to decrease before they start the next chemo drug. He seems to be coping so far and it certainly helps that he is no longer recovering from meningitis. It still amazes me that they started the chemo at that time and that jayden managed to get through it all. It would be naive to think he is getting through it completely unscathed though. These drugs have long lasting effects that we are yet to see.
He is on a constant IV drip of a drug known as ondancetron which is a anti nausea drug. It works on the part of the brain that controls vomiting. the major side effect that we know of so far is it slows down the workings of the stomach so if and when jayden eats something it sits in his stomach for days before its digested. So naturally jayden has no interest in food although that's no surprise when he only throws it up shortly after he swallows it. Poor little man. Would really love to see him eat something and keep it down.

Still pursuing the proton beam therapy for jayden as after this round of chemo they want to start his radiation. The radiation is planned for 5 days a week for six weeks and each day he goes in he's knocked out so that he doesn't move. The side effects are not good and both Danny and I aren't keen for it at all. Knowing this our oncologist suggested we do another round of chemo instead?? I can't help but feel nervous about the idea of that especially when they don't really know, just like the radiation if it will be beneficial or not. How does someone make a decision like that with no real solid evidence???

Just been told his methotrexate levels have come down and new chemo starts tomorrow. I hate this so much it makes me ill.

Good news is he's getting really good at sitting up on his own. Let's hope this continues.



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Friday, 4 May 2012

Round two


We packed the car this morning after a night at home, ready to head back in for round two. Danny dropped the kids off at school first then we both, along with jayden set off for yet another trip to the hospital. This one we knew though would have us there for another long stint. There will be no nights at home for jayden for some time.

Jayden sat happily in his seat completely unawares of what's ahead of him but for me the closer we got to PMH the more my stomach churned with nerves and fear. As soon as we pulled in to the carpark though it was like he knew. He began to cry. Danny tried to get him out of his seat but jayden didn't want to get out. He was crying and kicking and holding on tight to his seat. When Danny finally managed to get him out and put him in his pram he wouldn't have that either. He was so upset it was killing me inside. I grabbed him and cuddled him and burst into tears. And then I had to carry him inside. That walk to the doors of 3b from the car felt like forever. I just wanted to turn around and go home. Tears poured from my eyes as I held him walking to those doors, I so want my life to be different. I so want this all to stop and my wee little boy not to be living this hell.
I so wanted to leave and take him back home where he is safe from needles and nurses and drugs and things that are so scarey to a two year old. Yet I didn't. I took him in and he was admitted.

We arrived at his room and sat on his bed and both of us tried to be normal playing with his toys that he bought. But all the while knowing this is so far from the normal we once new. Danny left soon after and jayden and i sat and talked and read and played until doctors came and talked about what we already knew was ahead of us and nurses came to connect him once again to a bunch of lines for fluids ready to bombard him with methotrexate.

Danny returned back after lunch and I went home to pick the kids up from school, have dinner with them then come back, swap with Danny and I stay and he goes home for the night. This is now our routine and although not ideal there is no other choice.

Fortunately they started the methotrexate while Danny was here as I can't stand watching them come in all geared up to protect themselves from the toxic drug they are putting in my sons veins. Its difficult to be ok with that. In fact, I can't see how anyone could be. It makes me feel physically ill and completely helpless.

I got back two hours into it as its given over a four hour period. Since I've been back he's pooed heaps and vomited. Eventually they gave him something to make him go to sleep and now he is asleep beside me.

My little angel. I am so very scared for him and what's ahead of him. I'm tired, exhausted, mentally and physically drained and this is only round two.
I'm no super mum by any means. I am a mother who has shit choices for her precious boy doing what I have to do.
This is round two and I'm hoping with all my heart that my son stays alive and manages to get through this unscathed. He's yet to get more chemo tonight. What a hell of a journey.

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Wednesday, 2 May 2012

Brave little man

My brave little man with his newly fitted broviac. It's the next day and he no longer requires pain relief! How does he do it? I do not know. Amazing little brave man.


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Broviac

Jayden had to be in hospital early Again today to get his broviac inserted. Danny bought him in at around 7:00am and they were admitted to a room on 3b. I arrived not long after.
For those that don't know what a broviac is, which I most certainly didn't until I got here along with a pile of other things. A broviac is a catheter, a long, hollow tube made of soft, rubber-like material called silicone, with an opening called a lumen. This catheter is commonly referred to as a central venous catheter because it is inserted into the large vein leading directly into the heart. I even googled a picture, mainly for my own benefit when he first got one as I didn't have any idea what it was.


Fortunately the procedure went well and was all done within an hour but now we have to stay overnight in case of infection.
After being home for a few days it is so hard to be back here. I miss my other kids so much its awful and jayden keeps wanting to leAve and asks after them.

On top of that we are still classed as infectious because he had a tummy bug last time we were here and until they get three 'good' samples of his poos, we are infectious. Which means neither of us are allowed out of the room. Damn it.
Fortunately if all goes well we should be home after his GFR tomorrow. A GFR or
Glomerular filtration rate is a test used to check how well the kidneys are working. It takes at least four hours as blood needs to be taken every hour over that time. If all goes well we should be home by tomorrow afternoon.
Then we have to come back Friday to start the next chemo cycle. Don't want to think about that right now.
Wish we were home now playing Lego like we were last night. Really miss us all being together.



Last night and every night that jayden is home Layla reads him books before bed.

Tuesday, 1 May 2012

MRI

MRI all clear. No sign of tumor. What a relief? Was so worried the result was going to be different with all of Jaydens vomiting but thankfully it's all clear. Yah for now.
Seems simple enough doesn't it? Just saying MRI is clear makes it all sound like a day which was a walk in the park. Only it most certainly wasn't . Anything but. What's behind all that is far from a walk in the park. It all started with jaydens food being turned off at 2:00 am so he would be fasting for a general for the MRI and as most of us would know small children do not understand why you aren't feeding them or letting them have drink 8 hours later.
He had arrived in hospital with dad at 7:30 in the morning and then they sat in outpatients till 11:00. Danny then took him in to theatre where he is pinned down to administer gas screaming his head off until he falls asleep (I know this as have done it many times and it doesn't get any easier). Then there's the long wait for the results. While he is under they have to remove his nasal tube because it has a small piece of metal in it which you don't want in when you have an MRI. All seems simple enough, except it had to be put back in later.
Roughly one hour later we are called to recovery and Jayden has woken up screaming the same as he went Out. I gather him in my arms to comfort him only to find I now need to take him to X-ray to have his tube put back in. He has one that by passes the tummy into the next bit (my medical terms) so it had to be put back in under X-ray. Of course he's awake for the entire time and strapped tightly in a bed that sits under the X-ray while I have to hold his arms. All the while as you can imagine he is screaming and crying looking at me pleading to stop it. How Many times I have had to ignore those pleas makes me sick thinking about it and feel like a completely useless mother. This process takes sometime of course.
Danny came in and swapped with me as he is much better at keeping it together than me and I had to walk away with him screaming after me. As soon as the door closed behind me I broke down, no different to any other day since the beginning of march. It just simply NEVER gets easy. Watching your child continually suffer and not being able to do diddly squat about it is NO walk in the park. Anything but that.
Once that ordeal was finished I finally got to cuddle him but all he wanted was to be in his pram. I think he truly feels its his only safe place.
We have good news today but I know it comes with a rocky road ahead. More tears, more fears, more screams, and no doubt nightmares. I can only hope that we will see a rainbow at the end of all of this and we will look back And know it was worth it and THEN go for a real walk in the park.

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