Tuesday, 31 July 2012

Home now!

Extremely tired, all jet lagged. Desperately need to sleep. Cathay staff on First leg from
Chicago were great but lets not go there with second leg. Left high and dry when we arrived in Perth and weren't told our luggage never came with us. Waited over an hour at baggage claim until realized it may not me there. Was told at baggage enquiries it didn't come with. Not sure why no one mentioned it to us upon arrival as they knew when we left. Nice.
Kids are stoked to be home and reunited with their toys!!!
Really happy to see friends and family. Haven't blogged about jaydens graduation yet but will after we have slept.
Miss all the wonderful people in chicago. We love our new family there. Thinking of them all.
Jayden smiling.



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Monday, 30 July 2012

Flying home

We are currently sitting at OHare airport in Chicago waiting to board our plane to go home. Cathay pacific have been wonderful! They greeted us when we were unloading our seven suitcases from the taxi, which I have no idea as to how they managed to fit. Andrea was amazing! He walked us to check in and sorted everything out for us. I was so anxious on the way here but once we met him it became easy. Thank you Cathay for having such wonderful staff working for you. am feeling much better about our journey.
So now we have an hour to go before we board our 13 hour flight to Hong Kong. Ewwww. Not looking forward to that. Jayden is in fabulous spirits and so far no vomiting or crying. All good for now.



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Saturday, 28 July 2012

MRI update

Dr Goldman rang yesterday and they have compared scans and so far so good, no sign of disease. we can breath a sigh of relief for now. We know it's just for now, that anything can happen as the nature of this type of cancer
Is nasty and aggressive. But a good scan means we have more time and right now, everyday is a blessing.
I stayed last night at the hospital with Jayden. He slept really well and has woken up really sprightly. I, not so much. Beautiful to see him happy and walking around. He's still vomiting but not as often.
Jayden getting he's vital signs taken by our wonderful nurse Deirdre.



One more night and we are out of hospital! I'm so looking forward to that for Jayden. I know he will be so excited when we get to walk out the door and into the car! The nurses tell us we should be out by lunchtime and I hope it's not a second later.



I love this picture of Jayden and his dad!

We are sitting on his hospital bed at the moment watching Kung fu panda. Danny and the kids are on their way in and I know jayden will be so happy to see them.

It's been so wonderful to have us all together again during the first seven weeks we were here and a bummer to spend the last weeks apart. I know it's what to come when we return and I'm dreading it but looking forward to having us all home again tomorrow night! Then Monday, the following day we will be flying home! Still can't believe this part of the journey is over. I only hope the next part goes as fast, and if not, faster...




Friday, 27 July 2012

I just love this picture!




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MRI results for now

Jayden is feeling better and that means we are all happier. He was so excited to see the kids in the morning yesterday when they came in and back to his happy smiley self.
He had to have an MRI as the follow up to the radiation he completed and Dr Goldman rang me last night to tell me it all appeared good but will talk to me today after he has compared it to the other one Jayden had previously here.
So relieved so far and hope when I speak to him today it will be fine still.
I'm so happy to see my little happy man back and am really looking forward to seeing him this morning. It was Danny's night to stay last night and although I hated saying goodbye to jayden last night he was so brave and didn't cry. He knows his dad is great and is so very good with him. This whole mess has certainly bought us so much closer as a family and we cherish every minute we have with each other. We have the gift of knowing that there is no promise of tomorrow.

I'm laying here now with my beautiful two other children while they sleep. As always one on either side of me and I wouldn't have it any other way. I miss them when I'm away from them at the hospital and its so nice to be so close to them now.
I woke up early today worrying about our flight and tickets and packing and of course jayden. it's so difficult to be doing all this and living back and forth at the hospital, there just isnt time for anything.

Im looking forward to seeing my little man this morning and want to get in there as soon as we can as he is due for a lumbar puncture and I want to be there with him.
He goes through so much on a daily basis and I still don't know to this day how he manages it.

I know at the moment I am so relieved to see him smiling again and can't wait to give him a big squeeze when I see him and plant his entire body with kisses.

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Wednesday, 25 July 2012

I spent last night with Layla and Luke. I took them out for dinner and then we hung out at home. I spent more time catching up on packing and cleaning though, rather than with them but lately I have to keep busy because I'm really not coping as well as I would like to.
It's 6am in the morning and I've woken and not been able to get back to sleep. The kids are on either side of me in bed and snoring. All I can think about is Jayden and I'm so very worried. The infectious control doctor came to see us yesterday and told us jayden would have to be given IV antibiotics until Sunday. That means he has to be in hospital until then and we are meant to fly out on Monday. Although I'm not sure of that either anymore as I just read a post on the help jayden stone page about a typhoon in HongKong that is holding up passengers in the airport there. Scarey.

Jaydens not himself. Ever since he woke from his procedure he has been crying a lot and not himself. He didn't get excited when the kids came to see him yesterday and he's hardly said much at all. He seems really sad, and who could blame him.

I lay here now and still can't beleive we are going through this. I'm still shocked that an innocent child can be struck by such an awful disease. I know I'm not alone and that's shocking too. It's not until you enter this world of childhood cancer that you realise how many mums are watching their child go through the same thing. It's devastating.
Words will never be able to describe this nightmare...

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Monday, 23 July 2012

Results

I'm sitting At the end of Jaydens hospital bed after reading about another child lost to ATRT and the words that our surgeon once said to me in the beginning of this whole mess keep ringing in my head. At this point he had not removed the cancer but gave me a very basic rundown on what cancer it could be. He told me cancers are loosely grouped into three types. The good cancer, that winds up being benign and they remove it and we can go home a couple of weeks later. The not so good cancer, but can be treated cancer. and finally the AGressive cancers that you get 6 to 8 years. As if talking about a prison term.
Now I sit here watching my son and think of that time frame. We had a win today and found out the infection is not on his heart valves. But how many more wins will we have?
He's so perfect and innocent. How many wins will we get?

When we went to the recovery today to pick him up it was so awful. His face was all puffy from the fluids, I could hardly recognize him and he was crying out in pain with a hoarse voice from the tube that had been down his throat helping him to breath and the new gastric tube in his opposite nostril. His chest was bruised from the removal of his broviac and he now has a line in his right hand thats upsetting him something terrible. He was scared, upset and I felt so bad for letting them do this to him. Nobody understands the torture of handing your child over for procedure after procedure. Watching them so frightened and theres nothing you can do. Wishing so bad you had some sort of control but you have none. seeing them look at you, pleading for it all to stop but you can't stop it. I feel like such a shit mum cause I can't make it better for him.

I give him so much love when he gets back, loads of cuddles and reassuring him I love him but I feel like a fraud. Why can't I stop this, why can't I fix it.

When Luke realized I wasn't coming home tonight he got upset. He said "jayden always gets you the most, it's not fair", and he's right, it's not fair. I wish I could make it fair.



Mistake

Accidently reposted a blog entry. No idea what I'm doing most of the time with this blogging stuff! Think I need to get my ten year old daughter to help.

A place of peace

Most people would find their place of peace maybe reading a book by a poolside, taking a walk on their own, or just choosing anywhere in a quiet place for their head to rest. Those places were once my places of peace but now are my places for nightmares. Left alone, with only my thoughts is the most awful place I can be. I went shopping last night on my own and as I walked into the shopping centre I began to feel ill. The obvious absence of my children, and the busyness that comes with that was awful. Once apon a time I loved to have some time out from them, now I hate it. Without them means I have nothing to think about to keep me busy, without them brings the quiet. And the quiet brings the thoughts. I couldnt stand it as i increasingly felt the saddness overwhelm me. I turned, got back in the car and went home. Back at the apartment i cuddled my daughter, kissed my son on the cheek as he slept, checked on jayden and put the covers back on him and was able to breath again. I kept myself busy cleaning up after the mess from the day and watched some TV with my wonderful man. Thats as close as peace i can get. Busy, trying to keep my mind off things.
I read on Facebook last night that another beautiful boy had fell victim to this dreadful disease and passed away. A blog entry of another struggling and the mention of fellow friends with ATRT kids also passing on. The feeling of sadness and reminder that your child is facing the same fight these children did is so fucken scarey i went to bed and cried myself to sleep. I can't truly describe how sad I am, how shit this situation is. That every breath I take hurts. That just getting through each day is a struggle. Every minute, keeping busy to take my mind of it but all the while there is really no escape. There is nowhere to run from the feelings, no where to run from the pain. It is there always and forever. I asked danny last night how do we get through life like this. It never goes away, there is no real place of peace for us.
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Being two

We are awaiting Jaydens recovery from his procedure and the results of his Echo.
it's a shit of a way to spend a Monday. We are so desperate to see his little face and to know he is ok.

When I took him in earlier we laid on the hospital bed in the procedure area awaiting the anethasist. There were no toys to play with, the TV wasn't working just four green walls and a curtain with a flower pattern on the fabric. I thought to myself how crap this is for a two year old to spend their life. He's meant to be playing with his toys, discovering new things in the world and just being two. Instead he's sitting in a. Hospital bed waiting to get yet another procedure. For the past 5 day she's been confined to his room because he has an infection so he's not allowed out and today when we walked out to put him on the bed to take him to the procedure he squeezed with delight because he thought he was going! Man that sucks big time.

He was so good though sitting in his bed waiting, we were there for nearly an hour before he came in and administered a drug that would relax him for his procedure. Here they don't allow the parents to be there when they knock the kids out and that bothered me immensely. We have not once been without holding his hand or cuddling him when they put him to sleep and today I had to watch him be wheeled away with complete strangers conscious but seemingly unawares. Although I saw him looking for me as they led me out and it crushed me.

I wish I could be coping better but quite frankly it's just never easy and I feel like its getting harder everyday.
I'm not sure if it's the pending chemo ahead of us or I'm just damned tired of it all. Either way I even get sick of writing how crap this is and wish I had more positive entries to write in this blog than negative. But the reality of it all is its not a positive situation, it's crap. Nothing about his diagnosis is good other than at least he has a chance of survival. To get to that has so far been a horrendous ride and we have an even more horrendous ride to come.

It's 2:41pm and he's been in there since 1:00pm, getting concerned. I do hope they call us soon.

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Forgot the photo!

My little man rocking it in hospital pjs ready for his procedure!



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I'm sitting in hospital, watching my son play with his toys and I still can't believe he's fighting for his life. We feel the pain of the possibility of losing him everyday. The knowledge that he may not grow to be an old man And have the life he deserves pains us to no end. A day to day battle for him and today is no different. He is still fighting a blood infection that comes with the added fear of it attaching itself to his heart which is all crap. He's back throwing up at night and in the morning only, and I'm so damn worried its shit. They are planning to remove his Broviac today so another one will have to be put in when we return.

On top of all this crap I'm stressing about flying home. On the way over on the 27 hour flight Jayden vomited multiple times, has medications he has to be administered around the clock and I had no help from anyone. Air hostesses are not nurses and they can't help. And when I asked for my husband no one could get him and when they were able it took so long that the drama was over by the time he got there. This was because he and my other children were sitting at the back of the plane. Of course the airlines have no idea how hard this is because they aren't living this bloody nightmare and how fortunate for them. Sitting up there in their wonderful offices with not a care inthe world except for how they are going to have their coffee this morning! How bloody nice for them. I have to wonder if it was them how many strings they would pull to make sure their family was together?.. Mmmm
Sure, jayden and I are traveling business class, we have a medical clearance and he has equipment that has to be running so we can't do economy. But really, was it that much to ask anyway? He's got cancer that's so aggressive that he has a shit chance of survival and he's two! is it so hard that a multi million dollar company can't do that? My god we have had so much help from people who have nothing and a huge company can't? We asked, pleaded in fact if they could up grade the rest of the family so we could be together we even offered to pay if they could give us some kind of discount. But no, that's just not possible, they just can't dig down into their pockets to allow us to be together during a shit time.

I'm really cross today because I'm tired and fed up. I haven't said anything about all this before and just road the waves in the hope that they would come good in the end. Of course this didn't happen and why should I be surprised. We live in a world of greed and more greed, run by huge corporations that just don't seem to care about the little people anymore or ever did?.
In fairness though to airlines, Qantus did offer us free flights over and back all traveling business class together but at the time we couldn't take the flights because of the departure times and the situation we were in with jayden in hospital 24/7. Looking back now I wish we had of been able to, I wish we had of had the time and energy to make it work but I'm not sure how we could have. I approached them since we got here and asked if they would take us back but they too said no? That annoyed me too because it seems that because we didn't take them up on the offer to begin with then it's a case of too bad too sad, didn't take it then so not having it now. In all of this I'm thinking does no one realize my son is so bloody sick and fighting for his life???? Noses put out of joint, too much money to care, and just plain selfish?

I would love to be able to praise one of these companies for putting aside their budgets for a second (not that our flight would affect it) and their egos and just think of my son. It's not going to happen though and there is nothing I can bloody do about it.
I'm not sure if it's the flights, the airlines or just my unbelievable anger about how bloody unfair our situation is. It just really saddens me that there is not more empathy in this world. Us little people are there for each other and we have been so fortunate to experience that from all of you who follow this blog and have helped our family out in so many ways of kindness. But as for the big guns, the ones that could help people the most, well forget it. God forbid they lose a cent of their huge incomes.

So I sit here now watching my son, waiting for the nurses to call him up to be yet again anethasised and in for yet another procedure and I'm feeling so bloody crap it's not funny.
all I want and all I'll ever want is for him to get a decent bloody break, a promise of life, and a promise of a healthy life. Neither of that is a surety at this point and it is truly crushing.


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Sunday, 22 July 2012

Looking forward to today

I'm laying in bed between my two beautiful kids Layla and Luke. It's 7:00am in the morning and they are both still sound asleep. When I'm home from the hospital we all sleep together. It's beautiful. I wish we could all sleep together all the time in a massive big bed that would fit us all. Then j could know that they were all safe. I could hear them breathing, know that they are right next to me and that they are ok. I wish that i could always know they were safe and ok know matter where they are and always.

Im laying here thinking about jayden and wondering how he is. I know he would be fine because he's with his great dad but i miss him. When I told him yesterday that I was going to go but dad was staying and I would see him tomorrow he said "no" and cried. But I gave him the biggest cuddle and he cuddled me so tight back and when I put him down he understood. He is so very brave. Since we have had this time as a family and he's been able to spend more time with dad he's not as distressed as he use to be when I leave. It's better but I still want to be there to hold him tight always and forever. I miss him terribly when I'm gone. His cute little face, his beautiful laugh and smile and everything about him. I wish i could have him next to me right now then I would give him a big squeeze and hold him tight. Tell him how much i love him and never let him go.

We sat up watching tv in the hospital bed till quite late the other night and we chatted about what we were watching and all the while snuggled up with the covers and his new fluffy bunny Marcia gave us from Procure. He can't suck this one but he doesn't mind. He seems to be growing up so fast but not into a little boy but a wise old man. He's endured so much and so much to come and with his smile and attitude he just keeps on going. Most of us never experience what he had in our whole lives yet he keeps smiling and carrying on.

I've had a goodnight sleep and I'm looking forward to going back in the hospital to see my gorgeous man. Both of them.
I'm looking forward to seeing jaydens little face light up when we walk in the door. He misses his brother and sister so much when they are gone. I'm looking forward to picking him up and giving him the biggest cuddle ever and holding him so tight. And I'm looking forward to us all being together......







These photos are from before we came to chicago.

Saturday, 21 July 2012

Still in hospital

I'm back at the apartment with Layla and Luke and I'm missing jayden like crazy. Last night I was a hospital with my beautiful little man and tonight is dads turn. I hate it so much that we are separated and it hurts beyond words. Danny and I are alternating nights so the kids all get to see us. But either way it sucks. When I'm at the hospital I miss Layla and Luke and when I'm home I miss jayden. But tonight is worse than ever. I'm just feeling particularly like shit tonight. I think without our routine at procure and seeing familiar faces makes it all so much harder. And more than anything in the world I want my son better and us all together as a family again. I'm so tired of it all. I never seem to feel like I'm getting enough sleep and I'm just sad. How I wish our lives were different.

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Friday, 20 July 2012

Still in hospital


It's Friday afternoon and Jayden is still in hospital with no news as yet about when he can leave or what exactly is going on. Spoke to the nurse yesterday and she told us it appears he has an infection in his lines and that the broviac will have to be removed. However today it is still in and I'm not sure what's happening. Unfortunately it is Friday so I'm kinda anxious to find out what's going on because anyone who has had their child in hospital for any length of time knows that come the weekend no one is around to find out anything so I most definitely do not want to sleep on all this.

Just spoke with the nurse, thank goodness, and she told me his infection is in his blood, not the lines. So his line has to remain and depending on how the bacteria reacts to the antibiotics over the weekend will depend on whether or not his broviac will be removed on Monday. I just want to take him home. He wants to be with his brother and sister and all of us hate this.
It's a taste of things to come and we are all already over it.
Having so much time together as a family has been so good and I so don't want it to stop.this will always suck, it's just crap.


On top of that we are having difficulties with our flight changes and it's all a bit of a mess right now. If only life was easier.





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Wednesday, 18 July 2012

In hospital

I'm laying next to Jayden right now in a hospital bed at Central Dupage. His blood cultures from yesterday came back positive again for a bacteria that they are not sure if it's in his central line or blood. Either way it's not good and we now have to be in hospital until it clears. He's on two different types of antibiotics, one of which is making him itch his skin at the back of his head like mad. It's all shit really. Can't believe we finished his radiation today only to end up back in hospital. He's crushed. He Was so unhappy when we got here and wouldn't get out of the car at first. I hate doing all of this. My poor little man, how much can one little person take? I mean really? This is just bullshit. I'm tired, I'm sad, and I'm so over watching him go through all of this.

I checked my emails today and got one with a link to you tube with a video of jaydens journey on it. It was the most beautiful thing I have ever watched. I could not stop crying. It was if I had all this emotion inside that I spend everyday holding back and watching this video made it flood out like a tidal wave. Nothing prepares you for this sadness and you don't realize how much you suck it up just to get by.
The video was beautiful. Thankyou to the wonderful person who made it,

Going to try and sleep now.

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Tuesday, 17 July 2012

A busy day

I'm laying next to jayden and its
7:30pm. He's still not quite asleep but not long till he will be. The sound of the neighbours air conditioner is humming in the background, a sound I'm so use to now. When it starts up it makes a rAther loud noise that reminds me of the sound of the tugboats in Fremantle Harbour horns that they blow when bringing in a ship. It's weirdly alike and reminds me of home when I hear it. In some ways I'm looking forward to coming home, especially to see family and friends but we leave behind friends here too. Very sad.

Jayden got off to a rocky start today with his early morning visit to the hospital but he made it his treatment and they let him sleep more than usual after his treatment so he could catch up on sleep lost. We eventually had to wake him after an hour or so and take him home. by lunchtime however danny and him were ready to go down for another nap.

While they did that I took the kids to see the movie ice age 4. Was great , always fun to go out to the movies-you get to sit down eat a pile of junk food and be entertained. Kids loved it and so did I. Came straight home after that, much to Luke's disgust who since we have been here has discovered games that you pay money to play (can't remember the correct name for them) and is seriously hooked. We Managed to get out and home without a dummy spit though which was great.

Arrived home to two gorgeous men, one danny and the other Jayden in well rested good moods. So decided to take advantage of that And venture out again. After 15 minutes in the car it wasn't looking like such a good idea due to kids fighting And yelling at each other. Reminded me off the days my own father would threaten to stop the car and turf us out if we didn't shut up and with that we did as we knew well enough that he stuck to his word and unless we wanted tobe left out on the pavement we shut the hell up. I'm not sure how I ended up such a pansy of a parent as I'm no way near as strict as my father was. I don't know if it's be ause I now have a very ill child or if I always was soft. I must admit I'm not that soft Sometimes as i do do my fair share of yelling but it's never quite as effective as when my dad did it. Maybe my kids no I'm bluffing? Anyway we kept going with our journey and half an hour later we made it to our destination- rainforest cafe!

You really have to go to this place to experience how cool it is for kids. Totally decked out like a rainforest, with life size toy animals that move and background rainforest sounds to create the ambience and huge aquariums all around. and to top it off they make a yummy margarita. first time I'm had one of them in a very very very long time.

Kids had a ball, we got to relax, sort of, for a while and an hour or so later we were on our way back home.
Jayden is now asleep. My scrumptious little angel. Tomorrow is his last day of radiation treatment and we will begin the countdown till we go home. It will be the end of an amazing experience. A sad experience as this whole process is but made so much more bare able by wonderful people. I can't praise them enough. I know my little man is going to miss going into procure and playing in the playroom, chatting to maureen and Christine and helping her work. ( at least that's what he thinks he's doing). Helping maryanne with cleaning his lines and setting up for treatment, again, helping may not be exactly what he's doing but he loves it and they love letting him do it. He's going to miss them all so much, that I know. These beautiful people have become like family to him, to us all and it's going to be so sad to take him away from them. I wish I could pack them all in my suitcase and they be forever a part of our lives. I hope they will be.


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Return from hospital

Danny and jayden arrived back at 6:30am just in time for treatment! They had taken more blood and all was good. Yah!

Headed out to Procure virtually straight away with jayden smiling away, how he does that I'll never know. Little warrior.


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Blood results

It's 3:39am and we have been up since 2:30am after being woken by a phonecall from children's memorial hospital. Apparently the results from the bloods drawn from jaydens central line yesterday came back as positive for an infection. This means he could potentially have a blood infection or infection in his line. We were told we have to bring him in immediately and danny has just left with him. I'm hoping everything is ok. When we woke him he's as cherpy as he always is and has no temperature, so hoping thats all a good sign. Best case scenario is they draw some more blood and find the first results were incorrect. We are all Hoping for that but it will be a while before we find that out. This also means another day of no treatment.
Really hoping everything is ok.


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Monday, 16 July 2012

Unexpected visit to children's memorial hospital

We arrived at procure today as per normal and Jayden was pretty happy to hang out with Christine at the front desk. He really loves her and I know he's going to miss her as well as all the other lovely people here when we go. He has really come to consider them as family just like the rest of us and oh my goodness I do not want to say goodbye.


Jayden with Christine

Maryanne called us in and we went to his room where they set everything up and clean and flush his lines, connect him to an IV and get ready to go.
Maryanne and Jayden
The anesthetist arrived soon after and we talked about the weekend and if there were any changes. I told him about Jaydens vomiting and that it had increased on Sunday and again this morning. We then saw the doctor and together they spoke with doctor  Goldman and came to the conclusion that Jayden shouldn't have his treatment today in case there is swelling in the brain that's caused his vomiting. Dr Goldman organized a MRI at children's memorial to check. The anesthetist told me not to be alarmed they just would rather be sure than not. As a mother of a child with ATRT its impossible to be any more stressed and worried about my child's well being.
Luke and Jayden hanging out together at procure

Just to Be on the safe side they sent Jayden and i there by ambulance. Which I have to say is the safest I have felt on the highways here so far. Jayden slept the whole way there. We arrived in no time at all and were in a room waiting to see a doctor within minutes. The nurses and doctors were great ( we saw a few today) and I was fortunate enough to see Dr Goldman even though it was just for a quick visit as they were asking for us at MRI when he walked in. What a gorgeous man, I do love him.
Us strapped in for an ambulance ride

Dr Goldman had organized for a scan first of his main ventricles in his head so he wouldn't have to be sedated and it was only going to take a few minutes. It seems like not much but he has to be strapped in on a table, wrapped up in a sheet so he doesn't move (except for his head) and his head all padded around after putting ear plugs in his ears then a cage like thing over his head that has a mirror on the top of it so I can see his eyes and he can see me. They then slide him into this huge cylinder shaped machine and take a series of images. The machine is extremely loud and jayden cried and screamed for me the whole time. Awful.

It was over in 5 or so minutes but felt like hours. When we got back to the room a doctor came to inform us that everything seems fine and they won't be doing the MRI after all. Yah for Jayden. I was so relieved.

By this time it's 2:30 in the arvo and neither of us have eaten and very ready to go home. We ended up getting out at 3ish and in a cab and home after 4:00pm.

Jayden was so excited to see everyone. We had planned to go out for dinner and even though it was the last thing I felt like doing, we did. And it was great. Jayden was so excited to be out with his brother and sister and squealed with delight when we arrived. He's so excitable it's hilarious. I think he most definitely was happy to be out of the hospital room.
We had a great dinner and came home, bathed the little man and now he's asleep.
He was so brave today like everyday and I am so very proud of him.

This is the ambulance we traveled in. Just had to post it because I thought it looked more like a delivery truck than an ambulance. 


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Sunday, 15 July 2012

Great America amusement park

Today was the beginning of yet another new day and as always we were woken bright an early by our rascal boy Jayden. Chatting away about everything and anything at 5am in the morning. As bright as a button he is in the morning and always eager to get outside and into everything possible. What is it about us adults that we have lost that enthusiasm to spring out of bed and get outside and into the day. Instead I find myself laying in bed wishing more sleep would come. Thank goodness for small children to not allow us to waste a single second of the day. And to show an effort to go really hard today we decided to brave the unknown and venture out to the Great America Six Flags amusement park in Illinois. The kids had seen it on the Internet and insisted we went. so we did.
Jayden on one of the rides 
It took us a little over an hour to get there and even though we made it there before it was open there were masses of people already there with the same idea. This amusement park is huge, nothing like any of us have ever seen before. Probably not the best place to take Jayden but he managed quite well considering it was sweltering hot and there's not much shade there. It's definitely not the most relaxing way to spend a Sunday, would much rather a nature reserve myself but the kids were excited and enjoyed it and i managed to have fun because of them. They did hate all the walking And the heat but there wasn't a lot i could do about that although plenty of times they asked. If only i could work miracles and if so changing the weather would not be on the top of my list.

We did manage to have a good time though, all things considered. but its always difficult to take a family to something like that without a whinge or two from the kids or mum and dad having a spit as well. I find myself always wanting our days to be perfect though and I've come to realize that that's just not a realistic goal. I'm beginning to think that maybe my expectations are too high and that maybe its just better to be happy with our new normal rather than wanting perfect. I just worry (there I go again) that with everything already happening to our family I just don't want all our memories to be sad ones and so I try to cram in as many fabulous and most of all happy days in their lives as I can. This has become very important tome. That we are happy, Especially for Jayden. Everyday I want him to see something new, try something new, and experience something new. I want a massive long checklist of things he should do in his life and spend the rest of his life checking them off. Today he can check of 'been to a massive amusement park in America'. Yesterday he checked of ' ate at California pizza restaurant with family and tomorrow we will think of something new again.





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Saturday, 14 July 2012

MTOP application and no sleep

I was asleep but then woken by the phone and now I cant get back to sleep. Another moment on my own left with my thoughts. Everyone else is asleep, all cozie in their beds. Snoring. I have a family of snorers.
Im worried about stuff I shouldn't be worried about when I already have enough to worry about. If that makes sense? I think I must be the worlds best worrier.
We got an email the other day about the MTOP application saying that they have accepted our application. This should be great news and indeed it is but also brings with it stuff I shouldn't worry about but am.
I'm sure if I was just able to sleep right now everything would seem not so bad tomorrow.
Although that's hard.

Jayden started vomiting again tonight and hasn't been for nearly a week. Makes me nervous. The likelihood of his tumour returning is at its highest in the first six months of his treatment which brings us up to roughly the end of September. That's just crap isn't it? Having a child with a cancer so aggressive it returns within six months of treatment and if not then, the chances of it returning later are only slightly lesser and the longer it doesn't return the better the chances of survival.
I talked to dr goldman on the phone the other day about just that. I asked him what we would do if it returned and his answer was "we don't want it to return". There are trials out there testing new drugs but basically if it returns it's even more shit than this. Hard to beleive.

I watched him today playing and thought about what he makes of all of this. Tohim, this is normal, to him this is life as he knows it. To him he knows no other life. He rarely questions it, he knows it to be no other way. I tried to find comfort in that. In knowing that he has accepted it then he would not feel the sadness or worry that I do for him. I looked at him smiling and laughing with his brother and thought about how happy he is right at that moment. That how good it would be if I could box that up and keep it to give to him in any given moment of sadness that he will feel in the future.
I worry myself senseless that I will one day have to hold him when he is not feeling anything like that at all and I wish that if that day did come I could open that box and he would be that happy little boy forever again.
That time hasn't come and I pray and hope with all my heart it never will. I'm so very scared. More scared than I ever have been in all my life. As it gets closer to returning home I feel myself thinking about it more. Worrying about the future. Stopping myself in thought and trying to remind myself to take one day at a time. How exactly I do that I'm not sure. I fumble through each day holding back the negative thoughts but that's the best that I can do.
I watch other parents with their healthy children whos worries probably consist of what's for dinner tonight or school lunches, maybe work issues, partner issues, whatever and I envy them. I remember when they were my issues and I wish so much they still were.
The sleeping tablet ive taken is now taking affect and I'm going to finish this now. Below are some photos of jayden today, my precious little man.













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Friday, 13 July 2012

Documentary

The last couple of days we were fortunate enough to spend with some amazingly kind and fabulous people. Joe Saunders and his amazing crew hung out with us to get footage of Jayden And his treatment as part of a three minute documentary about proton beam therapy and how it
Is a way into the future.

It was an interesting experience in that they were complete strangers when we met them but by the time it was time to say goodbye we were very sad to see them leave. Genuinely kind, warm, funny and fabulous company. Beautiful with jayden and Layla and Luke and gentle in their approach to a difficult time. Danny and I were also interviewed which was extremely difficult as talking about the past takes us back to the saddest point in our lives to date. However they were wonderful in the way it was handled and I so wish we had more time to get to know them better.

This whole journey has been filled with meeting people who we have felt become good friends overnight. Come Monday the 23rd we will be leaving so many wonderful people behind but never will we forget their kindness, support and friendship.

It never ceases to amaze me how wonderful people have been to us.
From people assisting us financially to helping us get here to those that lend an ear or work to bring a smile to our face.
They have all left a special memory in our minds and touched our hearts.

From a shit situation has come a special closeness to people whom were once strangers. My brave little man has bought us all together and without knowing, touched so many hearts.

I watch him now as he sleeps and I hope one day he will bring all these people together once again but this time in celebration of his recovery.

Thursday, 12 July 2012

New friends

Jayden seems a lot more tired after treatment these days. A lot more moody during the day and more cranky. He even looks more tired.
I'm so glad for him that he only has three more days of treatment to go. Not glad that he will be then beginning chemo treatment but at least he will have radiation soon behind him.
Still working on taking one day at a time but often thoughts of the future take over.
Hard not too.
Met three wonderful women and their sons yesterday, all boys have ATRT. I felt like I had met friends I will know now forever. A club I am now a member off that no one would chose to be but I'm a member of all the same. Women who are familiar with my hurt, sadness and fear. All three have sons that completed the same protocol as jayden. All three Understood the nightmare I'm living for they have all lived it and will forever sleep with one eye open. There is no real end to this nightmare. Only a case of taking one step at a time in the hope that all the steps needed to live the long life I dream for jayden will be taken. All these women have the same dreams as do all mothers for their children. Our club however has sons with far more obstacles to overcome before they fulfill that dream.
Above: Four beautiful boys!


I'm laying next to my little man right now. He's had a big day. We all have and we all are in need of a big sleep. I feel like I need five days solid of sleep, like I'm carrying a huge weight on my shoulders every day and at the end of each day I just want to put it down and rest. But there is no disposing of it, Not this weight.








Tuesday, 10 July 2012

Dr Goldman

We were all there when jayden woke up from his treatment today and he was so very excited to see us all there. He sprung up in bed as soon as he heard the kids voices and was ready to play. He wanted to go straight to the new kitchen in the playroom at Procure to show Layla and Luke and we hung out there until it was time for our appointment with Dr Goldman. Unfortunately though today was not a good day for Jayden. He was so cranky when we got there that it was difficult for Dr Goldman to examine him and impossible for us to chat with Dr Goldman. I was so disappointed, it was very unfortunate. Danny and I had so many questions we wanted to ask him in person but couldn't as we had to leave due to Jayden being so miserable. I dont blame him though as normally we would be home and he would be playing and having something to eat.
Dr Goldman did try everything to amuse Jayden though and had us all laughing but not poor jayden. He had luke catapulting balls of rubbish off a rubbish bin lid and encouraged him to throw his sticky ball at the window. Very funny. Layla and luke had a blast but Jayden just wasn't up for it. He just did not want to stay, I think he had just had enough and wanted to go back to his kitchen at Procure.
Nevermind. Sadly it's the last time we will see Dr Goldman in Chicago but he did tell us that when Jayden is older and gets married he wants an invite to the wedding and that he will be there. I hope we get to send that invite, more than anything in the world that would be the best thing ever.
I will miss Dr Goldman dearly. We all will but hopefully we will see him at Jaydens wedding.




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Thanks Jono


Thanks Jono for Jaydens fabulous super hero toy! He loves it and takes it to bed with him along with his other special toys. Beginning to get a bit squishy in bed these days but we like it like that.  And thank you to Jess from Building Blocks Toy Store for the sticker books for Layla and Luke.
It means alot to have your support. Thank you, we are truly grateful.

Monday, 9 July 2012

6 more treatments to go





Jayden did his 22nd treatment today and only 6 more to go.
He was pretty happy to be at Procure today as they have a new play kitchen in the playroom and it's a beauty. Biggest play kitchen I've ever seen. With microwave, dishwasher, phone, all with buttons you press that make noise. Heaps of plastic food and crockery, loads of fun. Jayden was loving it and didn't want to leave. When Maryanne came to get him he Scooped up some Plastic cups in his hands to take with him to the treatment room. Wanted to take a bit of the kitchen with him. They weighed him today and he had put on 0.1 of a kilo! Yah for Jayden.

After his treatment had finished he insisted on going back into the playroom and continued to play with the kitchen. on unsteady feet from the anesthesia and all, but he didn't care. It was really nice actually as both our favorite people (of the many favorites we have here) Maureen and christine, played with him in the playroom and I got to chat to them as well. I am so going to miss these lovely people. Definitely wish I could fit them all in my suitcases and take them home with us.
Sadly we can't and will have to leave them soon.

After treatment we bundled the kids in the car and drove out to yet another park but this time in Aurora. It didn't end up being quite what we had expected but glad we went out all the same.
Came home, had dinner and now laying next to jayden sleeping.

Every night I put him to bed, we read some books, look at photos of the day on my iPhone then I lay next to him till he sleeps. When he does I never want to get up. I just want to lay there holding him listening to him breathing. Watching the peacefulness in his face. Perfect.

Tomorrow we have our last appointment with dr Goldman. Will be very very sad to say goodbye to him. A gorgeous person and wonderful doctor.
Wish we could pack him in our suitcase too.
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Sunday, 8 July 2012

'Oh well'

Until you have a child with cancer its somethjng that ' happens to other peoples children' . Its not until it happens to you that you all of a sudden become one of the 'other people' . it is without question the biggest shock of your life when you hear the words 'your child has cancer'. Your heart sinks, your eyes well up with tears, all of a sudden there doesn't seem to be enough air to breath and you're waiting desperately for someone to say 'actually it's not cancer after all'. They don't and You are then left with getting on with your life with the now painful ache in your heart that never goes away and the unbearably sad knowledge that you may lose your precious child. You no longer have any control of their future and require an enormous amount of trust in your doctor that they will do what's 'best' for your child. And there is absolutely nothing you can do to change the situation.

Im mentioning this now as i spoke to a woman not long ago whom like most people is extremely unawares of this situation. When I told her about Jaydens condition her remark was 'Oh well, looks like your having a good day today though'.' Oh well'? I have to say I felt like slapping her, but I realize that its an 'oh well' situation to her because she has completely no idea. Its hard not to be angry though sometimes. Its hard not to be angry with people who don't understand. I sometimes just want to yell and scream as loud as I can at every person in this world that has no idea how bloody unfair this is. But I know I can't . And really, I don't think I would want everyone to know how this feels because that would be horrible. I guess what I would really like is just understanding. But not even that I can really get unless they have lived this.
I know this, because before this happened to me I knew nothing of this world. I knew nothing about childhood cancer. I had no real idea what types there were, how often they occurred or how successful treatment was. Now you could ask me just about anything and id have a pretty good idea of the answer. I dont want to know the answer, i never wanted to know anything about cancer. I would love to be this woman who says 'oh well' but im not. I'm a mum with a child with cancer and it's so far from an 'oh well' situation its not funny. It's an 'oh shit' situation, but yes, i will agree with that woman and say 'we are having a good day today'. If only it was that simple.....







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Saturday, 7 July 2012

Caught in the middle

I can't believe Jayden only has seven more days of treatment and not long after we will be home. I'm sad already that we will be leaving the beautiful people we have met and even sadder that we will once again be separated as a family when Jayden returns to hospital. I'm absolutely dreading that and Jayden doing chemotherapy. Im happy to go home to see our family and friends who have been so wonderfully supportive. We have missed them all. But I wish it didn't include returning to hospital. Its hard to comprehend the journey Jayden has ahead of him and when i think about it it makes me cry. I look back on what he's already done and I still can't beleive he wakes in the morning smiling and plays about and laughs most of the day. Normal to him, heartbreaking to witness, my chest feels tight just thinking about it. His little body has been through so much already and you have to wonder how much more can it really take? I scare myself thinking about it. I watched him today getting about with the enthusiasm of a normal healthy 2 year old boy, he still walks with a slight limp but it doesn't stop him. I watched and sadly thought how that will once again be taken away from him and he will feel like absolute shit again laying in a hospital bed. It's just shit. I so wish it was all over now and we were coming home to no more treatment, no more aneathesias, no more needles, drugs, nasal gastric tubes and all the nasty memories of it all.

It hasn't even started again yet but everyday it gets closer the more anxious I feel. Jayden of course has no idea, i cant even prepare him for it. He played with his brother and sister today, laughed and had a great time at the zoo. On Layla's request we returned to Brookfield zoo and even though it was really hot we had a really nice time. In fact I'm not sure exactly why but today was one of thebest days we have had. I do think that maybe its because we all know this will all end soon and we willbe back to being strangers passing in the night. At least that's how I feel.

I wish chicago wasn't as far away as it was as I would definitely return. Maybe one day we will. I would like to think that one day in the future my little man will be well and strong again and we all comeback to see these wonderful people again and have a real holiday. One where Jayden can swim, have no medication, enjoy his food and keep it down, no anaethesias, no needles, no gastric tube, no broviac, and just good old fashion fun with all of us without worries. I hope and wish that for him and for all of us.








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Friday, 6 July 2012

Sore head


Jaydens asleep. He's snuggled up so close to me I don't wAnt to move. I want to close my eyes so bad and go to sleep with him as im so tired. But i dont. Have to get up soon and help Danny with Layla and Luke.
The last couple of days I've found I've had the least amount of energy since we have been here. I figure it's because we are getting ready to go home and lots to think about and do. I don't know? Maybe just The same but noticing it more. Jayden was certainly more tired than usual today and very cranky most of the day. We do find towards the end of the week he is struggling and seems more tired than usual and cranky because of it. The back of his head is so very sore as well now and that's bothering him a lot. When we took him out today with the kids after his treatment he was not happy at all when we were driving. The back of his head was rubbing on his seat and he was very bothered about it. Bless him though as he didn't whinge about it for long and just accepted it. He's so not like me, I would have most certainly still been whining about it and all the way back home. But not jayden, he whinged heaps to start with and we almost turned bAck but then not again for the rest of the day. He really enjoyed the nature reserve we went to, all the kids did. They got to pat a Fox snake and a turtle and Luke asked the lady if she would take the madacascar cockroach out to pat and they got to pat that too! Yuck! But jayden insisted we ALL pat it. Ewww! Unusual little creatures. Have been around since before dinosaurs apparently. I wonder what their secret is?




Very hot day today, we were all glad to be back in the air conditioning at the apartment. Had a fun day and now ready for bed. No treatment tomorrow and am so pleased for jayden about that. Only seven more days of treatment to go!



I will be very sad to say goodbye to all the beautiful people we have met but very glad to see jayden finish doing radiation. Not looking forward to the next step.


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Thursday, 5 July 2012

Brothers

Jayden had his treatment this morning early again. I like it early because we are out the door not long after he has woken up and no time for him to ask for a drink or food so I don't have to say 'no'. Different aneasathist today from Tuesday but we have had him before. They are all wonderful. Today however his milky stuff seemed to be pushed through a lot faster than I'm use to and no doubt jayden and it took me completely by surprise when jayden passed out so quickly. He did a couple of coughs and then gone. Was abit scarier than normal and made me ill with worry.

when I went back to him after they were all done he was his usual amazing little man. Sat up like nothing had happened and ready to go home. My goodness that never ceases to blow my mind. I know if that was me I most certainly would not be sitting up like nothing has happened and then playing straight after. No, no, no. I would still be laying there now, and whining about how crap I feel.
When I got him home he was out the car and playing cars with Luke in no time. Danny took them both shopping for groceries and then for the rest of the day we just hung out. Not very exciting but it was very hot outside today and with Jayden not being able to swim there's not a lot else to do in the hot weather. Was good though as we were all happy just to chill anyway.








Jayden and luke hung out heaps today. And these are just a couple of the photos. Before bedtime luke read jayden a book on the bed and played with some stickers from one of the books. They have always been good mates but of course do have their moments. Since we've been away though they have had to rely on each others company 24/7. Luke has no mates he can call on here to play with so jayden is it and it seems to work. Of course when they get sick of each other they hassle their sister but she's beautiful with them.

I videoed them today playing and chatting to each other and as I was doing it I sadly thought that this maybe a video that we look back at one day to remind us of jayden. I held back the tears as that awful thought crossed my mind and tried to think of something else. Impossible. They laughed and joked with each other and my heart ached. How much a loss of a child can and will affect everyone that is touched by that child. Luke has no idea the magnitude of that loss and my god I hope he never has to feel it. I hope nothing takes his brother away from him, that he will always laugh with him, cry with him and wrestle him. That they grow old together and enjoy life as they should together. I hope that they get to share a beer when theyre older together, party together and all the good things brothers do together. I know they will be great mates, they already are. They share a bond that is so very special and as i video them I'm crying inside hoping with all my heart that nothing breaks that bond. That nothing takes my son away from his brother for i could not bare that loss nor bare to see my sons heart break from that loss.


I hear my son Luke laughing at the moment as I write. Jaydens asleep by my side now and danny is putting the other two to bed. But not without a wrestle and a play before. He's a great dad. I know he will always be there for Luke but I hope jayden will too. There's nothing easy about this mess. Everyday there's an ache, a reminder of how shit it all is. And everyday I spend trying to fight off the thoughts that crush my heart, but shit it's hard.









Wednesday, 4 July 2012

Can't sleep

Sometimes when I go to bed at night I sleep but other times like tonight I lay awake anxious about the future. Anxious about what lies ahead, worried about what tomorrow will bring. Watching my son sleep, watching him take his little breaths, in and out. His peaceful look on his face. Watching his eyelids moving back and forth, dreaming. Hoping his dreams are happy ones. Worried he will not live to dream about big ambitions, cars, girls, great job.
Anxious of his future. How can I not be? Scared out of my mind that I will lose him...
Wishing sleep would come to release me from this torture.

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4th of July

Very special day for Americans but just another day for us boring Australians. Jayden asleep by my side at 6:30pm and Luke and Layla not long to follow. As for Danny and I, we will be in bed early too so no celebrations for us. Would like to have gone out to see fireworks but jayden needs to be on his pump early, especially when he's fasting like tonight so just not possible. But that's ok because we had a lovely day out with the kids today and an early night is just the ticket to end a beautiful day.

Very hot today and we didn't head out till late morning. Went back to Funways as requested by the kids and spent a good couple of hours playing games to win tickets for very cheap and nasty toys that the kids loved. I have to say Danny and I had a lot of fun as well.


Came home and within twenty minutes of being inside the kids were hanging out to get out again so Danny took Luke and Layla swimming and jayden and I hung out in the air conditioning at the local shops for a little while. Would have loved to go swimming and I know Jayden would have too but it's just not an option at the moment.


The best part about today was jayden had no treatment and not only did that mean no aneasathist but also no fasting. The kids love that because they know they can eat. When he's fasting they cant have their breakfast until we have left for treatment and they hate that. Although lately it hasn't been too bad with the new time as we are usually out the door before they wake up.

He did ask though if we were going to see 'nannA' which was so cute, he's really going to miss Mary Anne when we leave.
Back into treatment tomorrow however and hoping to get a chance to speak with someone about jaydens MRI. No one has yet spoke to me about the comparison to the other scans so anxious to hear the results of that. Am hoping to see Dr Goldman this week as well as have a few questions I want to ask him. Jayden also had bloods taken on Monday and would also like to know those results.
So hopefully by the end of the week all of those questions will be answered.

Jayden never vomited today which is fabulous and he was just brilliant all day, they all were. I love my kids. Every one of them is so damn special. They are what gives me the strength to get through each day without turning into a basket case. They are my reason to keep going. I am so grateful to have them. My precious babies have grown into beautiful strong, courageous and brave children through this shitty situation. They manage each day without question, without judgement and with strength. They help each other through this difficult time and they make me so proud.


We will never be the same family or individuals that we were before this mess happened but we are stronger as a family and together we will some how get through this. We have done so far and I know we will continue to. Just one day at a time......


Tuesday, 3 July 2012

A day in the Forrest

This picture is of jayden as he is as I'm writing this blog- sound asleep with a doll that he got from Procure. They have a treasure chest of toys there for the kids and every now and then Jayden gets to choose a toy from the box. This doll is one of the toys he chose. Not a car or dinosaur this time but a baby, and very happy about it too.


Today after his treatment we took the kids to a nearby nature reserve. We had gone there on sunday but got rained on so decided to head back there again today as the weather was fine. I would take Forrest walking any day over a city visit, and thats what we did when we were there. we walked to see one of the local attractions there known as devils cave. Which although small by some cave standards was interesting all the same and the kids loved it. We also spotted many squirrels and chipmunks on the way which is always a delight for the kids. We saw a raccoon last time we were here but not on today's visit.
After the walk we left to grab a bite to eat. While driving we found a fun ways centre where there is a bowling alley, ice rink, game centre, bumper cars, mini golf and water boats all under the same roof. We are obviously limited to what jayden can do even though he believes he's not so we just hung out at the game part and the kids had a ball playing video games and winning prizes. We finally got to eat whilst there but jayden didn't eat anything. This got me anxious to get home and offer him some of his favourite things. So we left, arrived home not long after and jayden had a little bit of a vegemite sandwich and glass of milk. So far so good, he has managed to keep down most of the bits of food he has eaten in the last couple of days. Extremely excited about that.
No treatment for Jayden tomorrow as its July 4th and a holiday here. It will be nice for him to have a break and hopefully give his poor head some time to heal. The skin at the back of his head is so raw and sore now and hurts to touch. He copes so well though, I know I wouldn't.


Not long before bed time he was playing in the cupboards. He loves to hide in them and gets a real kick out of hiding from his brother and sister.


This is a picture of the kids mucking about in the car while we were waiting for dad to get some much needed supplies from the shops. They were great today as always. Although they are all ready to go home. Not long now though. Jaydens last treatment is on the 17 th of July and we fly out the following Monday. They really miss their friends, school and home. But coping really well all things considered.
Had a good day today. It was busy and no time to think. Its at night when everything is quiet and there's nothing to do that I think of what lies ahead. I wish I knew what exactly did lie ahead, a crystal ball would be nice. Some sign or knowledge that Jayden is going to be ok, that he will sail through mega therapy and live for a long time. I wish I knew. It's the not knowing that wrecks my brain. I hate it. I cry for him every night I go to bed. I cuddle him and hold him tight and hope with all my heart that we see another night together and another and another. And as many as we can.