Saturday, 29 September 2012

Time at home

Haven't blogged for couple of days as we have been spending some beautiful time enjoying having Jayden home.
Having a tough day today though and finding it hard. I think the lack of understanding from others really pushes me back a step and I find myself smack back in awful land. Where I can't think about anything else but this dreadful crappy situation that rips at my heart and makes it almost impossible to breath without aching in my chest.
I'm trying so hard to come to terms with my life now but somedays I just can't. I try to find away in my head to accept what is but most days I just want to cry.
It's not until I talk to someone or receive an email from a friend that I truly realise how alone I am. They will say something that is not meant to be unkind but in some small way disregard what we are going through and then I'm reminded we are truly in this on our own. Everyone is just looking in from the outside, no idea what's really happening here or how much this whole situation on a 24 hour basis is so painfully consuming and heartbreaking. I watch my son everyday go through so much crap it brings tears to my eyes just the thought of it. When I look back on the last six months and what he's been through I'm beyond words. I can't believe to this day how much he has suffered, how mentally scarred he must be and certainly i know he is physically scarred. Danny and I talked about it this morning as we both went to bed last night thinking the same thing... What we have put him through. Now that his treatment Is nearing an end we will find out if it was truly worth it. Kids diagnosed with ATRT like Jayden typically have a life expectancy measured in months not years, as a doctor said on a video I watched the other day and posted on my help Jayden stone Facebook page. So we can only hope and pray that all the pain, tears and absolute torture at times would have been worth it. I do hope so. With every inch of my being I hope so.

I cuddled him tonight in bed and as he was chatting away to me I found myself crying. Tears trickled down my face that were unseen by him as we were in a dim light. Every time I hear his little voice I want to cry. Tonight I couldn't help it. I couldn't help but think will I ever hear him put all those little words into a big sentence and then a conversation. Will I ever get to hear him tell me about his day at Kindy, pre primary, school. What will happen if I don't? What will happen if I never get to hear that. I try so hard to come to terms with that very real possibility, but I can't. How could anyone? I can't just be thankful for each day when all I want is a lifetime. I don't ever want to say goodbye to my son and I'm so very scared I will have to one day.

We went to Danny's parents today and from the moment we walked in the door I wanted to ball my eyes out. The last time we were there Jayden was well and to be there again with our circumstances so different it was truly heartbreaking. After arriving and general chit chat which I find so damn difficult I found myself in the kitchen looking at photos on the fridge. A picture of Jayden with Layla and Luke before he was diagnosed cemented how damn hard it was to be there and how damn hard out life is now. It took my breath away in a bad way and I cried. No matter what we do we will never be able to get away from how shit this is and how awful we feel. I can't run from this, hide from this or even get a break from it. I watch my little boy every day, hold him as much as he will let me, kiss him and hug him as often as possible and there's no easing of this pain.
No comfort to be had in a cuddle from a friend or family either, no words can truly ease this pain, nothing, nothing stops this heartache.
I'm glad we went to Danny's parents though, for Jayden, as his cousins were there as well and we will keep doing it for him no matter how hard it is. I want him to know his cousins well and for them to know him well, for he is so very special and I think they should know that. I want everyone to know how special he is and how important he is to us. For he is a little hero and beautiful little man that asked for nothing but to be loved. We are going to make sure he gets that, my only wish is that i had a lifetime with him to do it.




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Thursday, 27 September 2012

Beautiful words

I failed to mention in my last blog that today jayden received a gift from a beautiful person whom is unknown to us. When I walked into his room this morning he was in the middle of enjoying his coloring in book and crayons and pleased as punch with his clothes. I opened the card that had my name on the envelope and read the words in it. Tears weld up in my eyes as I was so deeply touched by how beautifully kind and caring they were. This was from someone I have never met and it was so warm and heartfelt I was truly touched. A few days prior to that I had also received a hand written letter from another beautiful person that equally touched my heart.
It never ceases to amaze me how many beautiful people there are out there thinking of my son.
So many offers of help. I wish so much I could say what would actually help. I wish I could tell these beautiful people that if they did this, or this it would help. But there is nothing. Nothing can change what I so desperately want to be changed. Only a miracle or a magic wand will do that and I don't know of anyone who has them handy.

I wish so much that with all those beautiful offers of help I could give them something to do that would help.
I have never been a deeply religious person but praying i think is all i can ask. That i can hope with all the prayers that God will be listening. That if there are enough of them he will notice. That he could make my child's pain go away and he live the healthy life he deserves.

For every letter, message, email I receive I hope that people know that I read them, that they mean so very much and how very much I appreciate them.

To those people and anyone else who wishes to help, Pray for my son, even if you don't consider yourself religious please pray for him, and hope that God is listening.
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He's home!

I rang danny first thing this morning and he gave me the first bit of good news for the day and that is jayden had a good night, nothing like the night before. Luke and I then got ready to head in after Layla went to school and just before we left danny text me the second bit of good news which was the doctors have been to see jayden and have given him the ok to go home! Yah! So i returned my packed bag to my room and headed off with Luke.

Luke has been great through all this really. He never complains about going to hospital and I know it bores him to tears, he just jumps in the car and away we go. Chatting all the way. He's quite the talker these days.

We arrived there in the pouring rain and it took forever to get a park, at least it felt that long. Once we did we raced down to see jayden who's little face lit up when he saw mine and even more when he saw Luke. I'm so proud of how much they love each other, it is so special. Of course they argue as well but they get over it as quick as it started. No sooner did we walk in, Luke was up on the bed and they were watching transformers on lukes iPod together, very nice.

We then had the long wait of getting everything finalized to get out of there. I do find that bit very difficult. They tell you in the morning you can go but theres always a stack of things to be done before you can actually go. And all the while you desperately want to be first on the list for it all to be done and out of there.

He had to have platelets before we could even think about walking as his were only at 20 and Nick wants them at at least 30. So we had to wait for them to arrive, then once they did we had to wait for them to go through which luckily doesn't take as long as a blood transfusion. Next were his meds then daily injection in his leg which he was as expected really upset about. He then had to have the tape changed on his nose tube which I've never mentioned before I don't think but is equally distressing. With that they have to take off the tape under and over the tube which is on his face and it hurts, then put new stuff on. He gagged a lot this time and I was really worried the tube had moved but after testing it afterwards it was ok.

Finally after all that and getting his medications, pump bags, syringes and tape we left. He was excited but didn't want to walk today. He sat in the pram and didn't say anything. It was obvious he is was happy to be going but feeling very very ill. I noticed when I came in this morning that he's looking paler by the day and losing more hair. Another reminder that he is indeed a child suffering from cancer. Made me want to cry. I so want him to be the well little boy I know him to be and I'm so frightened of not seeing that again.

He fell asleep in the car on the way home but as soon as we pulled into the driveway he was home. Not as excited to be home as last time and I wondered if he thought not to be as he only ended up back there again. Bloody hell I really hate taking him there, him being pumped with all that crap and then bringing him home this weak, sick little boy, it is all so damn cruel and so crushing to witness.

He tried so hard to keep up with his brother playing but fell down a lot. His little legs just couldn't do it and his body was feeling just the same. He spent most of the afternoon on dads lap watching a video with luke and when i came home with layla after having to wizz out and pick her up from funtracks he was in my arms.

He never ate at dinner but sat with us anyway. After dinner he had a bath which he loves and stayed in for ages.
Now he's asleep next to me and I'm happy he's home. Im happy I'm cuddling him in our bed and not in a hospital room and i wish i could promise him everything was going to be okay and know that it willbe. I wish i could give him his health and he be able to run with his brother again. I wish i wasn't setting up a pump for his feeds at night but rather he gets up in the morning and i see him eat breakfast for the first time in seven months. I wish so much of his life were different. None of this will EVER make sense to me. Why he got this cancer? Why any child gets cancer? Why there's no known cure? And why him? Anyone that knows him knows how special he is. It just doesn't make any sense.

Watching him struggle to walk today was so very sad and we have noticed he isn't hearing things we are saying. I truly hate this journey. I ask myself all the time, if this is life then how does anyone live this?
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Wednesday, 26 September 2012

Not a good night

Jayden had a terrible night last night and couldn't settle. He was in a lot of pain from the mucositis and was getting regular doses of ocycodone and codeine. He kept waking up and telling me it hurts. It was so Awful to hear him so upset. Nothing seemed to help until about 5am this morning when they gave him doses close together. It Was an awful night. he was so buggared this morning and there was talk about putting him on a morphine pain infusion. Fortunately by 9ish when the doctors came around he seemed a little better. Still really tired but he was managing. He is truly amazing.
Good news is the doctors told me his bloods show that his counts may be on the rise so if he doesn't have too much pain tonight and no temp he can go home tomorrow. They have taken him off his antibiotics because he had no temp last night so besides his terrible night the doctors believe we may have seen the worst of it. We are so hoping this is true and all very excited about the prospect of him coming home.
It's Danny's turn tonight and i left jayden peacefully sleeping with him at the hospital this afternoon.
I'm home now with the kids and missing him terribly. Really worried he might have another horrible night and I'm not there. I wish I could be with all of them and I so hope that will happen tomorrow.
Really missing him right now as I write. Miss his beautiful face, his big warm cuddles, the sound of his voice and his little smile. Wish I was with him right now giving him a big cuddle.

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Tuesday, 25 September 2012

Another day another temp

Back at hospital this morning and so very happy to be cuddling my little man again! It was the first thing he asked for when he saw me and I couldn't have picked him up quick enough. Scrumptious little man. He had a high temp again last night but not today. The doctors say that he has to have no temp for 24 hours before he can go home so praying for that! If we can have no temp tonight we might be home tomorrow.

He was so happy to see us all when we walked in and kids have been playing with him and having a good time. I'm so happy when we are all together! It's truly these moments that mean so much.

Jenny our neighbour came to visit later and jayden was over the moon. He loves her like a grandmother it's beautiful. We are so lucky to have her living next to us. When she left the kids went with her and danny and I remained.

This time round we have allowed visitors as it brightens his day when he's stuck in his room all the time. As long as everyone is aware not to come if they are unwell. So if they are well and they wash their hands before they come in then we don't mind. So he's had a few visitors in the last couple of days and it's been really nice for him and us.
His Nanna came to visit as well and he loved that! Danny and I had to go to an appointment and Nanna stayed till we got back a couple of hours later. Bless her, she is truly wonderful.

He is now asleep in the most uncomfortable position imaginable but snoring happily and looking very peaceful. He's still getting IV antibiotics and some sores have developed in his mouth. Hes still on a constant flow of fluids in his lines and feed through his ng tube. He still cramps over in pain when his bowels move and requires pain medication but through all this he's still managing To sit up, play and smile. Amazing.

He had to have his dressing changed today and he didn't like that. Has to be done every seven days and his little chest is getting so sensitive to it all that I think it gets sorer every time. He got through it though and the nurse who did it was super quick so the stress didn't last for long. I think maybe that and all the visitors has got him so buggared now and that he's asleep.

I just went down to the parent room to make a cuppa and on my way back i saw a beautiful little boy walking along with his mum and he was attached like them all, to a line attached to some form of fluid or antibiotic attached to a pole on wheels.(certain there is proper medical terms for all that) What I noticed was how upset he was about it all and his line in his arm. I knew instantly that this is new for him and my heart broke for him and his family. It took me back to when jayden had his first line. It's instant, the moment you are admitted they insert a line and his 'new' life begins. It's so very tough for them for one day they are happy playing with their brother and sister and their toys and the next they are stuck in a hospital with a needle inserted to create a line and attached to fluids that are hung on a pole on wheels. This boy was clearly stressed about the whole thing and who could blame him? He doesn't understand, he never did anything to deserve it, you can't explain it to him and this is now his life for a while. How long? Nobody knows for sure.

Jayden is now an old hand at it as this boy know doubt will be one day soon. Jayden still doesn't understand why and certainly did nothing to deserve this but he takes it in his stride anyway. When the nurses bring out the blood pressure cuff he lifts his leg. The thermometer, and he shows them his ear. For medicine in his line he holds it up. He just knows what's going to happen and what he should do. This is for the stuff that doesn't hurt of course. When they give him his injection that he has DAILY to bring his counts up, he's screaming before they even get to him- of course. But he will lay there without struggling when it's getting done.
He now pushes his own pole around when he's out of his room if you let him. But unfortunately because he has a temp he has to remain in this room. We can't take him out to the garden or anything. Does he complain? No, not anymore. It will truly never stop amazing me his strength and spirit, his will to live and keep going and just how damn brave he is.

I really hope with all my heart he doesn't spike a temp tonight as I so want to take him home. As much as he is brave and amazing he's still my precious little boy I want to keep him safe. I want to scoop him up and make everything better for him and Take away all the pain. How I wish for a magical wand or miracle. for now though I just wish for no temperature and for him to be home with his family, where he should be.

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Monday, 24 September 2012

Sitting in the doctors surgery myself, waiting to see a doctor. I'm hoping to get some antibiotics to knock this dreadful cough on the head so I can stop worrying about infecting Jayden.

I had to leave him with Danny this afternoon as I needed to get this sorted and to have a night home with the kids also in the hope of getting a decent night sleep.

Jaydens temp came down today thankfully and was in better spirits with more energy. He had a blood transfusion yesterday and a platelet transfusion so his blood counts were up and that always makes him feel better. He still looks like crap but he was better than yesterday. His neutrophils are at 0.01 which is not good, we want them up as soon as possible.
He's on three different types of antibiotics at the moment. Two that are IV and one that is given down his tube. One of them is for a bacteria growing in his stools that is causing his diarrhea and two to cover the temp he had last night. Fortunately he only vomited once today which is a good day but it was a big one all the same.
Unfortunately because of the antibiotics we are now looking at being in hospital for at least another three days according to the nurse. That sucks.

I'm now at home with my other kids. The doctor said I have bronchitis I asked about the possibility of giving it to jayden and what that would mean. He told me he should be ok at the hospital as they will treat it quickly if he's got it. I'm so worried I've passed it on. As if there isn't enough already on his plate.

I've text danny and jayden and him have crashed early. I'm not surprised as jayden was looking like he needed a nap at lunchtime but fought it off and was still awake at 4:30 when I left.

Really hate being away from him and constantly worry but I know I need a good sleep to face another day and be the mum he needs me to be.

I'm in bed now next to my other boy and he's so happy to have me home. I'm thinking of jayden and wishing he were with us and not in a hospital room but laughing with his brother and sleeping with us.

Tomorrow can't come quick enough for me to see my little man again.


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Sunday, 23 September 2012

High temperatures

He's asleep. He's running a high temp at the moment and he's red all over. He had a reaction to the vancomycin where he was itching his head like mad and now most of his body is red. He's had some Phenergen to help with the itching so he's now in a deep sleep but all his body is still red.

He really went down hill fast this evening and wouldn't let me leave his side. Everytime I went to sit up from laying next to him he freaked and wanted me to lay back down. I knew something was up well before any thermometer told me.

I laid there cuddling him till he fell asleep, his little arms tight around my neck, breathing heavily into my face and feeling the heat coming of his febrile body. I whisper i love him and that everything will be ok, but i don't know that and i wonder if he can hear the doubt in my voice.

Thoughts enter my mind and the tears fall down my face. This is so very hard to come to terms with, this whole journey. Not only do I have to watch him fight through this awful stage of this cycle but even after that it doesn't end.

I'm so sad for him and how terrible he feels and it pains me greatly to not be able to change it for him.

I thought about his cot at home as we cuddled and the last time he was in it. Putting him to bed at night, reading him a book, Giving him a big kiss and cuddle good night and checking on him throughout the night. How different our night time routine has become. He has never slept back in that cot after the night we bought him here. Now our bedtime routines are either working around a hospital routine or a routine of medications at home. We still read the books but now he never leaves my sight at night. He no longer sleeps in his room which so desperately needs to be sorted I just close the door on it and hope I can get to it one day. For a long time I couldn't walk past it with the door opened and insisted it be closed, too many memories..

Im scared, i don't know what to think anymore as its so hard. I haven't slept properly in months.
I will never stop wishing for our lives back, for Jayden to be well and a normal two year old.
My chest aches with every breath, my thoughts are full of fear. I am no longer the woman I once was, I know i never will be as that's not possible.

I watch him sleeping and wish so hard that things were different.

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Saturday, 22 September 2012

Still in hospital

We are Still in hospital and i Am laying next to my little man as I type. He's not well at all. He had a temp earlier in the evening and again later but seems to have settled. His wee eye is red and weeping so guessing conjunctivitis again. The pain for the mucositis is being managed so he's relatively comfortable. But he is miserable and looks terrible. He's sleeping a lot and just not his happy self.

Our onchologist was in this morning and expects he will have a temp in the next day or two. He told us his counts are down and his important neutrophils are at 0.00. Bloods are low too and he also expects he will need a blood transfusion and platelets tomorrow. A much rougher ride for him this time round and awful to watch.
I feel even worse as I have a cough and could potentially pass it on to him and there's nothing I can do about it. Spoke to the oncologist about it today and he said it's just one of those things that can't be helped. I will feel so dreadful if he gets it while he is already so very ill.

He's asleep now and has been most of the day. When he's awake he's vomiting a bit and still squirting poos from his now very sore bottom. I am changing his nappy as often as possible and every time i wipe his bottom he gets very upset because it hurts so much. He complains of the pain in his tummy as well as his bowels move and so the nurses administer pain relief. It's so sad to see him like this. I'm so very scared of what the next few days will bring and nobody really knows. Awful, awful stuff.

The kids and danny came in to see him in the afternoon and then I went home with them for a bit. It never seems long enough and I know they feel it too. I love them so very much and often they get me when I'm so very tired, worried and run down and just not the mother I would like to be for them. I found myself growling at them today because we went to buy Jayden a toy to take back to the hospital for him because he was feeling so miserable. They were in the store with me whingeing because they wanted a bigger toy than the one I allowed them to have so they wouldn't feel left out. Did I get cranky and rant about how Jayden was sick in Hospital and that's what they should be upset about not a damn toy, and they should be happy they even got that and don't be so selfish, bla, bla, bla. I was just so tired and always want our small bits of time together to be perfect and they always seem to wind up with me getting cranky about something. Its awful. My beautiful kids are going to start wishing id stay at hospital soon I'm sure.
Fortunately the afternoon got better and we ordered pizza and watched a bit of a video by which time I had to get organized and come back. We all came back and Danny took the kids home. I still felt a bit miffed that I didn't get to spend a whole afternoon just hanging out with them but at least I got some I guess.
I miss them so very much when I'm here and they are just growing up so fast.
Jaydens snoring in my ear at the moment, he's congested. I'm really worried.
I know I can only take one day at a time but how I wish days like these would move so much faster so we can get to the good ones quicker.

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Thursday, 20 September 2012

Back in hospital :(

I'm currently sitting in my car outside of the hospital waiting
for someone to leave so I can take their parking spot and park the car. Nightmare. So want to get inside and see my little boy.

Not long after a parking spot becomes available and I park, get out with my suitcase and other belongings and walk towards the hospital in the pouring rain. I think to myself as I drag my suitcase that this is what my life has become, living in and out of hospital, it's not a life it's an existence.

We had to come into hospital this morning as jayden had to get his bloods checked but I did anticipate we would be staying as jayden is not well at all. We were up all night with him changing his nappy due to diarrhea and changing bed linen and clothing because of vomiting. He hasn't kept down any of his medications or food And he's just miserable.
We soon find out after arriving here that he has mucositis and that's making him poo a lot and his mouth is mucousy as well. Apparently now this has kicked in temperatures follow and so they don't want us to go home. Also he requires pain relief as the mucositis rips apart the lining of the mouth, digestive path right down to his bottom and right now he's very sore. We can't give him any pain relief orally as he's not keeping anything down so they are keeping him in also to hydrate him and administer pain relief intravenously.

I wizzed home to get clothes and the necessities but was unable to see Luke or Layla. I hate that because the first they'll hear of me not being home is later this afternoon and I wasn't able to say goodbye.
So a very sucky day had by all.



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Wednesday, 19 September 2012

Can't sleep again

It's the middle of the night and I can't sleep. I was asleep, at least had just dosed off when my son luke awoke me. He told me He couldn't sleep so I told him to think of something that makes him happy and sleep will come. I'm not sure where I got that from but no doubt it was something my Dad once said to me. He's asleep now and it must have worked. I on the other hand am not and usually I would be up taking a sleeping tablet by now or Valium but i know i need to have times where I don't. The last few days have been times where I have. How nice it would be if I could do that every night without worrying about the side effects etc. to be able to take a pill and just not think about crap for a while would be wonderful from where I'm sitting right now. In fact id be investing in bucket loads of them. It won't however make things better so I'm trying to sleep tonight without that help.
I even thought about what I told my son but I can't remember the last time I was truly happy. I know that the sound of my kids laughing makes me happier than anything in the world but now even though it's still beautiful it's loaded with thoughts that one day I may not ever hear my son Jaydens laugh again. I know I'm happy that my son is home but it doesn't take away that he is so ill. I try so hard to find a way to manage this whole crappy situation but I always come up empty. No matter what I think, read, say or do nothing stops the hurt. Nothing keeps me away from my thoughts and this dreadful pain that eats away at my very being.
I lay awake replaying the days, weeks and months events and it crushes my sole. I think about how it use to be and how much I miss that life. How much I miss being able to breath without pain and sleep at night without being consumed with worry.
I miss living. I feel like I'm just hanging by a thread and not living but rather, surviving. Just getting through the day without collapsing in a heap is a win.
This is all so bloody hard and it's when I'm alone and left to think that I struggle the most.
The nights that I can't sleep and I wander the house checking on my kids and feeling so lost. Lost at what to think or where to turn, crying myself to sleep praying that sleep will come and I can get the peace I so desperately yearn. Only to wake to face the day again, get into survival mode and do it all over again.

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Coming home :)

Jaydens managed to not spike another temperature so we can go home today! Yah!
A few hours or so later and we are now in the car going home.
He's so excited about leaving the hospital and so are we!
He insisted on walking out the door even though he is very wobbly on his feet. Luke took his hand and together they walked to the car like the beautiful close brothers they are. Keeping luke home from school and having him with jayden almost every step of the way has strengthened their bond like no other. Luke looks out for him with the maturity of a boy far beyond his age. I am truly so proud of the person he is becoming but so very sad inside of the hurt he may feel one day.

I'm happy we are all going to be together again. This whole ordeal is made so much more painful (if that's possible) being separated as a family. I had the worst night last night being home without jayden and danny as I missed them terribly. It wouldn't be so bad if they were on a holiday or something fun but I knew he was in hospital and not happy.
Sometimes it is so hard that I feel like I'm going out of my mind. I wonder how much more can I possibly take. My son has a cancer that may and very possibly return any day after his treatment stops and if it does that will be the saddest day of our lives. Our family has to live with that for everyday in our lives for the rest of our lives.
I would swap every dollar, possession and my life to have the little healthy boy he once was back.
Nothing of worth is worth more than that. I don't wish for money in my life, for a new car or home, new shoes, dress. None of that means ANYTHING to me. In fact I hate it all. I just want my son well. I want him healthy and I never want to have to think about cancer again.
But I know that won't happen, that this is life now and nothing can take away the fear, the pain and anguish of knowing my son may die one day.
We are home today, and for that I am grateful. How long I don't know but I am hoping and praying for sometime yet.
What tomorrow brings we do not know but can only hope for good health for my boy and my whole family, for that is ALL that matters.

Monday, 17 September 2012

Better day, temp gone

Jaydens Temp has gone down and if it stays down we might be able to go home Wednesday.
He's still on Antibiotics and I assume will be for a while.
Yesterday we spent most of the day napping because of the shocking nights sleep we had the night before.
The psychologist came to visit in the afternoon as a result of me being earmarked on jaydens file from the fiasco the day before no doubt. Was good to speak to him however, very nice man.

Danny and the kids came in with dinner and stayed for a while in the evening. Having us all together is always nice and jayden was in great spirits.

My friend Kathy came in for a visit later and it was so nice to see a friend. I think because of the day before and the emotions that were in it I was able to relax today. Amazing what a good cry can do. It was nice to just talk and be with a friend. I haven't sat and talked to a friend in so long and it was just what I needed.
Today is Tuesday and it's morning now. Jaydens about to get him stem cells and he's in really good spirits. Much happier and not so exhausted.
Danny and Luke are due in to visit and I'll be going home tonight to see Layla and Luke. I'm hoping tomorrow when I come back in the morning jayden will be able to go home. Crossing our fingers and toes all goes well with stem cells and he spikes no more temperatures. We all want him home again as soon as possible.


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Sunday, 16 September 2012

Shocking day in hospital

Dreadful day for jayden today. He's feeling very ill and spiked a temperature early in the afternoon. On top of all that he's got an awful case of conjunctivitis, although in the big scheme of things that's nothing but very stressful for him when he wakes up and can't open his eyes which happened today after his nap. He's now on antibiotics to combat whatever could be causing the temperature which is a big unknown at the moment and of course drops every six hours. He's been sleeping a lot because he feels so crap.

For the rest of the day There was a Drama over a bath which extended to the catheter and then the realization that nurses had accidentally put his ondacetron drip up so that it was running at 10 mls per hour instead of 2mls. A big mistake that required a lot of paperwork, doctors coming in clarifying it should be ok and me in a spin about what it all meant to be giving my child a drug 8mls more an hour than the required 2mls. Doctors assured me it should be fine but how does that not worry me senseless?? What else could have gone into him at the incorrect measure?? Its all very scary and only amplifies an already extremely stressful situation. One of my favorite doctors and I even had words as I was so very upset but fortunately that was all sorted.

It's so difficult to be calm and rational in these circumstances when your child is laying ill on a hospital bed.
He's asleep now and given the events of the day I'm not surprised. I haven't gone into details about it but let's just say its been one of the most emotional days yet, if that's possible.



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Friday, 14 September 2012

Snotty nose

Jaydens woken up today with a very snotty nose. His temp is slightly up and he's miserable. He's really hating the catheter in which I'm not surprised about. I wasn't here yesterday when they put it in as Danny was. I'm so glad I wasn't though as apparently they had to have three goes at it before it went in correctly. Poor little mite.

I asked Danny to be there this time as I found it so traumatic last time and I'm not sure me being stressed out next to jayden is what he needs to be feeling when he's already stressed out. Danny is much better at keeping it together. He's just better at keeping it together all round really, he never falls apart and just manages. I truly don't know how he does it but I guess at least one of us needs to be able to do that.

I'm sitting next to my little boy now as he plays with his garage and cars and watching tv.
When he woke this morning he said I'm sick mum, referring to his awful cold and I thought to myself, if only. If only that's all that was wrong. If only that's all I had to worry about was my boy and a wee cold. Now I even panic when my daughter or other son complains of anything aching, and i constantly look for signs of something more sinister. When cancer enters your life it becomes a very real thing that exists and not something you just read about or hear about. It becomes something you now KNOW can happen and I'm constantly worried about it effecting my other children or myself or Danny.

My sister is staying with us at the moment which has been brilliant, having family around is so comforting. I think after my mum passed away we all kind of went our separate ways in some way and although were always still in contact, it was different. Now with everything happening to our family i feel closer and more connected to my siblings than any other time. The sense of need to have them near now has never been more necessary.

Its midday now and not long before they start the next lot of chemo. Danny and the kids are coming in soon so Jayden will no doubt pick up. He's a little low at the moment. I really think he gets quite depressed when he's in here.

I spoke to a good friend today on the phone and haven't done in so long. I think people have taken my blogs quite literally and somewhere along the line I must have implied to stay away. As that is what everyone has done. It's kind to give me space and I have needed that but the messages I get in this blog, via emails and a text mean so much. They help me get through the day knowing someone is thinking of us.

My closest friends I don't hear from and I know it's just they are trying to do the right thing. I don't know what the right thing is so there's no way they would know.
Its such a Difficult situation where somedays I'm so angry with the world that I don't want to speak to anyone and other days I'm so lonely I wish someone was around. I feel stupid reaching out as I don't want to make people uncomfortable but am no doubt stupid for not.

When I do see people I know I've found myself learning the 'knack' of asking people about their lives now instead of talking about mine because it's almost impossible without crying and I know that makes people uncomfortable and me feel like crap. My beautiful friend from Melbourne taught me that and it works a treat. Means I can actually have a conversation and manage to blend back into society without falling in a complete heap.

Jaydens watching ice age at the moment on his DVD player. He's gone from cars to dinosaurs and has watched this DVD now at least twenty times. At least the movies he likes are good ones as I don't mind watching it over an over again either.

We have had to do the dreaded six hourly baths again with this grueling chemo and that's been driving him nuts. It's difficult to bath a child with tubes attached everywhere AND a catheter and he hates it. Last night fortunately the nurse we had let me just wipe him down instead of putting him in the bath. I love her, very nice lady.

I'm home tonight and danny is staying but I'll be back tomorrow for the next three nights. I hate not being here with him but know I need to spend time with Layla and Luke. Being torn between them is one of the hardest things about this journey. Not having us all together is truly awful.

I so hope he does well this round and we can come home next week. His cold is worrying me though as when his counts drop anything could happen. I was told today by the nurse he may need oxygen and that was scary. Everything about this is scary.
One day at a time, I know. The best advice s wonderful man we met through this named Simon told me once. He's so right. I wish I could actually do that and some days I pull it off. Others I can't help but worry about the future and what it holds for my precious son. It's those days I ache like no other, find it difficult to breath and just want to cry.


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Day one chemo

I'm laying next to my beautiful little boy in his Hospital bed with the railings up so it feels like laying in a big cot. He's asleep.
He's had a tough day. The last of his chemo for today stopped not long ago. He's been vomiting. He's been uncomfortable from the catheter and required pain relief. He's now sleeping with a very sniffly cold and I'm so worried about him.
I really feel like I've hit a wall emotionally. I feel as though now the tears are flowing more often and harder to hold in.
It doesn't matter what I do to keep my mind busy now, it just doesn't seem enough.
I'm not sure if it's because his treatment is nearing an end and the fear of the tumour returning or that it's just only so much one person can bare.

My sister was here tonight to bring back my dinner that Danny accidentally took back home with him. She would have to be one of the strongest women I know apart from her twin and my mum. She's always rock solid emotionally and gets on with life no matter what gets thrown at her. Her twin is no different. Two women I have truly admired all my life. Their lives are further rocked now on top of all this for reasons I can't disclose. Tonight I saw her cry and that was hard. Hard to see her hurting, hard to know how much all of our lives in my family have been rocked by the events of this year.
7 months ago we were all laughing and enjoying life and now here we are, crushed, hurting and the realization that life is so very fragile.

Jayden is snoring now, as I should be and I go to sleep tonight hoping and praying that soon we will all see a day where somehow we will find peace from this nightmare and be able to breath again without pain.


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Thursday, 13 September 2012

Back in hospital

Sitting in Hospital waiting to find out if they will be going ahead with jaydens chemo. He's still got an awful cold so after the doctors have examined him they will decide what's going to happen. My gut feeling is they will go ahead. As much as I would like to see it put off again I guess there has to be a point where they stop. I think it's now. The nature of his cancer is too aggressive to keep putting it off so I'm guessing they won't.
Bummer.
He's in such good spirits at the moment even after another snot test that he screamed all the way through and the knowledge that he wasnt going back into the car no matter how many times he cried to. Now he's just accepted he's staying and is making the most of it. Hasn't sat still since we got here but because he isn't attached to any lines yet that's ok. Not looking forward to him being rigged up again and mobility being a drama. Although never for him.



Climbing up and down the stairs with dad which once upon he would just gaze out the window and only hope to but now he's doing it on his own.
A couple of hours later and lots of cries to go home and see Luke as the realization of staying for the night kicks in.
Seen the doctor and they are going to go ahead with his chemo tomorrow.

Oh my god. This is so hard that I can't even put words to it anymore.

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Tuesday, 11 September 2012

Family now

"Family is the essence that helps define our very identity. Family means believing, loving and supporting each other".Those are the words on a photo frame I bought in Chicago and now in it, is photos of Jayden, Luke, Layla and Danny and I. No time in our life our those words more clearer. As a family we are now so much stronger. We have had to be. We are always supportive and loving of each other and even more so now. And most importantly we have to believe in order to get through this mess and we have to be there for each other to survive it.

I still can't believe our family is going through this. I still can't believe we were so unlucky. This is the sort of stuff that happens to 'other' people and we are now those 'other' people. A realization that it can happen to anyone and when it becomes you it's the scariest thing you will ever have to face in your life.

All day, every second of it I'm on the edge of crying. I don't but it's there and I feel it surging from the very thought of what is going on in our lives. I feel like my heart is in my throat most of the time and anxiety I have become use to living with.

Both my boys are out the back playing cars with each other and im sitting watching them. Nothing brings me more joy than to see them happy. Jayden idolises luke and copies his every move. He even insisted on wearing one of lukes tshirts today which luke was happy to let him wear. Its a little bit big but he wears it so proudly.

We have another day at home and recently found out we are not in hospital till Thursday afternoon so we get another day tomorrow as well. It's a beautiful day and with it brings a cool breeze, something i just don't enjoy like i should.

Every now and then I get a flicker of time without thinking about this situation but it is so short lived and passes quickly.

Jayden and luke are now playing basketbdll with danny. Jayden looking cute as a button in his oversized shirt and being held high by dad to put the ball in the hoop. What a little trouper. I'm so proud of him. He just keeps on going no matter what.

I sometimes feel a little disconnected from them all as feelings cloud my mind. I try very hard not to but i have my moments.

Dads here now like every tuesday and ive never looked so forward to seeing him visit as I do these days. Family has always been but more so now my life raft, the most important thing in my life and I just love having him around. He gets me, he gets the situation and he's always there with his shoulder. Very special man my dad.

Times for baths now, dinner has been had and Jayden is ready for his bath.

One more day to go and then back into hospital. How our lives have changed and so dramatically but one little man just keeps on going like its all same, same. My little hero.

Gotta love that smile.





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Sunday, 9 September 2012

A new day a new out look

A new morning a new day. Feeling like crap because of this dreadful cold and so is danny. Kids have got it too but you wouldn't know it. What is it about getting old and letting a cold get the better of you?
Better after a sleep though! Thank heavens for that! My goodness, i must have changed my blog entry last night about fifty times not sure where my head was at all yesterday. In a big depression hole again, gotta love that rollercoaster... Not! But every time i read it after i posted it it just didnt sit right with me. It sounded like i had given up on my son and i dont want to look back at an entry and think thats how i felt. Because no way is it. There is nothing in this world that will stop me fighting for him. Ill be in his corner forever theres no doubt about that. I know danny and i will never look back and say we didnt do enough because we are doing everything in our power and will continue to do so.
After this treatment is finished we are going to do everything to stop this revolting cancer coming back. I have been working on a plan with a fabulous naturopath to get jaydens little body back into tip top healthy shape and she also happens to be my sister in law. Beautiful lady and friend, very lucky we are.

Jayden woke worse today with this damn cold which I would like to strangle the germ carrier who gave us that! But of course we will never know who that is for sure. My money is on my uncle however, grrrrrr. But it could have come from school. I use to be a germaphobic before, now I'm a super germaphopic. Nightmare! We arenow keeping Luke home from school for the rest of the term as we can't risk delaying jaydens treatment anymore, even though I'd like to delay it forever!

Jayden has to go in to hospital again but this time for a dressing change. I can't wait till that broviac is out and no more dressing changes.

He starts up again on wednesday and that sux big time. No doubt the lead up to that will take me down that blarstard rollercoaster again but it won't keep me there. Im damned if this will keep me down. I will always have my most darkest hours with this crap scenario and thank heavens I have found an outlet for it in this blog. And thank heavens for people who send me messages of encouragement and hope for without all this it would be so much harder.

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There is truly nothing more heartbreaking than knowing your child may die.  I try very hard not to think about it but am faced with that thought everyday. The days that i manage are the days I can keep that thought far back in my mind and the days that i don't that thought is near.

Today I opened the newspaper and read a story about a beautiful boy who lost his battle with a brain tumor At age four and the reality of our circumstances came flooding right back, along with it, that thought. With it came the most intense of all emotions and I found myself sobbing like a child. Danny was there and the kids were out. He said to me he tries to focus on the positives for if he went where I go he would truly fall apart.

I wish I could be more like Danny and focus on the positives. I wish I could truly believe everything was going to be ok but as his treatment nears an end I am increasingly nervous, extremely scared and frightened of Jaydens cancer returning.

I watched my kids today as we walked along the river and was reminded how simple life should be. They were so excited to be outside and running in the sand, splashing in the water-simple stuff. Living the moment. I thought how wonderful childhood is and how it's only as we become adults it becomes complicated. Jayden is no different. He lives for the moment, every minute, second he lives to its fullest. He never stops to ask why, he just keeps going. He rarely ever complains and he smiles and laughs OFTEN. Childhood could then be regarded as the best part of our lives. No worries, no heartbreak, no pain or loss. Maybe not entirely for some and possibly not for jayden considering what he's had to endure, but I know he doesn't spend a second of the day dwelling on it.
What I want for him and his siblings is a full and long happy life, more than anything in the world.

Every day I try to make sense of it all and everyday I get nothing. There are no answers or rule book for this. I wish somewhere somehow I could find peace from this agonizing pain and hurt. Be able to go back into the mind I had as a child and just live every second to its fullest. Be positive like Danny, find that day in the future I can focus on that I will spend with Jayden.  I want so much to have that future with him and for him to have it for himself. Every second i am with him and look at him I am wishing that for him.

Im watching him sleeping now and hes so peaceful. I love him with every beat of my heart and I so hope that I see him have that long and happy life. I dont want to be afraid of what will be, I dont want to cry anymore about what wont be, but I am so at a loss as to how to do that.

Friday, 7 September 2012

Jayden needs hearing aids :(

We had to go back into hospital yesterday. One, because the nurses forgot to heplock Jaydens line and I didn't remember to ask and two, because Jayden had another hearing test appointment at audiology.

We got there reasonably early and the nurses sorted out his lines then off we went to the hearing appointment.

I knew at the last test they did Jaydens hearing wasn't the best. That he wasn't hearing what I knew he had been previously and this test confirmed exactly that. He had initially only lost the high pitch sounds in the last test before the first round of mega therapy but now it's gone down into the range that affects his speech, so not good.

They told us today he will need hearing aids. Crushing. We knew it was a huge possibility but still it's not easy hearing it as a certain. Very sad.

I knew that this meant also that it would effect his dose of chemotherapy for the next round. Nick rang us later in the day to let us know exactly that. He will now only be given 50% of the normal dose for his protocol of carboplatin. It's the carboplatin that damages the hearing and even after chemo stops he said there is likely to be further damage. He can't say if the dose won't still damage his hearing but he knows he can't be given the full dose as that most definitely will.

Sometimes I feel like this isn't happening as it can be so mind blowingly out there in the realms of normal life. it just doesn't seem real. 7 months ago my son was a normal toddler. Now he has an aggressive cancer we all hope and pray never returns. He has hearing loss from treatment and who knows what else is in store for him. so sometimes i just feel like it CANT be real. Or more so, wish it wasn't.

It's Saturday morning and a new day. One that I am so grateful to be spending at home with my precious little man.




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Thursday, 6 September 2012

Home as Jayden not well enough for chemo

We took Jayden in early to hospital today. We were originally expected to get thereby 4pm to start hydration for chemo tomorrow but last night I emailed our oncologist with some concerns about illness in the family. Luke had been ill with a cold and I have been Feeling yuck with similar symptoms and was worried jayden would have something brewing. He told us to come in early and have him checked out.

As it happened last night Jayden had a terrible night and I could hear him all night very mucousy. He had a temp in the morning and was just generally not well. We took him in and explained what had been happening and they decided to wait till next week to start the next round. I wish it was never.

While we were there they took blood cultures to make sure the temp had nothing to do with a line infection and he had to do a PNA test (snot test). He hates these and I'm not surprised. They put a long tube down his nose and draw snot out to test. It's very quick but extremely stressful and he screams through the entire process. He knew he was getting it done when we started walking towards the building instead of going down the ramp we normally do. Before we even reached the door to the building he was crying and wouldn't walk in or get in the pram. Danny had to pick him up, he was so upset it was awful. When we got to microbiology that was it, he really knew it was happening and became even more upset. Luke was with us and very confused as to what Jayden was so upset about but soon found out and was a tad traumatized by the whole thing himself. We all were. Hate doing this stuff to him.

We then went back to his room as we had to be in isolation from everyone else because we are all sick with this cold now, danny included but not Layla. She went to school today and she never seems to get ill.

The doctor from the other day who jabbed jayden several times and still didn't get a vein but left him and i extremely traumatized arrived to examine him and Jayden took one look at her and was upset. I have to say so was I but wasn't quite as vocal about it. He wouldn't cooperate with her to do anything but just cried and moved away. I think since the other day he is back hating hospitals.

Danny and Luke had to leave to get Layla from school but jayden and I remained to wait for results of snot test and bloods. Not long after they left the doctor returned with the results of tests. The tests showed Jayden has a low grade virus and bloods are ok at the moment, nothing cultured. So we could go home.

We then rang danny to come get us and waited. Got talking to someone about chicago and at the mention of Procure. Jayden perked up and said " see nannA, see nann? We go see nann?", oh my goodness, he doesn't miss a beat. He misses Marianne from Procure so much it's horrible. We can't even talk about her in front of him because he wants to go see her and when we tell him he can't he cries. They were all so beautiful at Procure and we really miss them all heaps. Wish they weren't so far away.

We got home in time to make dinner and now everyone is in bed. Asleep. I should be too. I'm so tired.

I feel like I can breath a little better now knowing I don't have to put him through this torture tomorrow. Knowing that we have a few more days together.
How a day together becomes so damn important now. Every moment, cuddle, smile, word is so damn precious. I don't ever want to let any of it go. I feel like I'm holding on to It all so tight now that every muscle in my body aches.

I worry so much that the next time I allow them to do this we will lose him forever. I'm so very scared. I try not to think about it but how can I not. I'm just at a loss as to what to think. Its so nice to know we have more time, I wish I could have more.
I wish I could have my little well boy back. Not a day goes by that I don't wish that.






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Wednesday, 5 September 2012

One more day at home :(

Not feeling well these last couple of days. Not sure whether it's legitimate sickness or just sheer worry about whats to come.
Luke has been Sick with a cold and conjunctivitis so we have had to keep him home from school but would have anyway as his teacher rang us Monday morning to let us know there is a lot of illness in his class at the moment. Tossing up whether to send him back at all this month while Jayden is doing this round of chemo.

Seriously do not want to put Jayden through this again. We so want to stop now. Every inch of me wants to not do this to him and it's killing me the very thought of it. I keep wishing there was another way. We are seriously thinking about not doing the third round but I don't think we can make that decision yet until we have done this one.

All day I spent yesterday on the brink of tears and today is no different. Have been trying to keep myself busy but nothing stops me from thinking. It doesn't matter what I do today I am still in a constant state of anxiety. I'm so frightened about how Jayden will go with this round. I read on the Internet and know mothers with children in similar conditions how things can so easily take a turn for the worse. We know every time we subject him to this stuff we are essentially risking his life. But what choice do we have?

This never gets easier in fact as Danny said today to me, 'it gets harder'.
We are especially worried because Luke has been ill and Jayden could potentially be carrying the same virus but it just hasn't shown itself yet and will or could when he has chemo. Which is really not good at all.

I'm sitting at the kitchen table at the moment and Layla's about to finish school. Jayden is asleep in the car out the front with Danny. My dad is working in the office and Luke is helping him, well as helpful as a six year old can be with banking and office stuff. entertaining more like.

I'm very lost today, just like yesterday. I really don't know what to do or think anymore. It's just driving me crazy. Not being able to think and breath like I use to be able to is truly exhausting and really damn sad. I just want to cry and cry and cry until there are no more tears. But I know that the tears will never stop, never. Our life has changed forever and I'm not sure if there will ever come a time that I will be "use" to this new life.

I went to the doctors yesterday with Luke to see if we could knock his conjunctivitis on the head. He inevitably asked me about Jayden and I wanted to cry. I didn't. Luke being there made me suck it up and inform him of Jaydens progress. His comment was " it must be hard".
There's no doubt about that. It's hard, very hard. And it's always really really hard leading up to the next round of chemo.

We have been so fortunate to have him home so often with this round and I just don't want to let him go again. I don't want him out of this house and in the hospital and I don't want him away from the family. I hate us being separated its truly crushing.

Luke being home these last couple of days has been so nice for them both. Jayden and him have been spending heaps of time playing even though Luke has to wash his hands so often it's driving him nuts. They chat together, laugh together and Luke its constantly looking out for him and helping out where he can.

I love that my kids are so kind to each other. I love that they know enough to know that their time together is special. There's something vey unique and can't be explained with words their connections with each other. I'm so worried about their pain in the future.

I really miss that freedom of not worrying about tomorrow. I miss enjoying a cold breeze on my face and not having to think about anything else but that feeling of coolness. I miss being able to look at my children and wonder what they will be like when their adults instead of worrying if they will ever get to be adults.

I'm dreading tomorrow. I don't want this to be happening to my child or my family and I hate with a passion that I can't stop it.

Monday, 3 September 2012

Kidney and hearing test

I'm laying In bed squished up at the very edge of the mattress just about falling off thanks to my wee little man that seems to be able to take up the entire space of a bed.
Yes, they are all asleep, but not me. One day I hope I will go to bed, not worry about anything and sleep. However I don't think that day will come anytime soon.

Today we were up bright and early and Jayden and i went to PMH for his scheduled GFR kidney test and his hearing test.
We got there on time, and were led into a treatment room for jayden to have a line inserted into his vein so they could push the radioactive stuff into it then draw blood from his central line every hour for four hours. This process can then determine how well the kidneys are functioning.

All abit scary in itself really as the stuff they inject into him comes in a metal syringe so it cant come into contact with Anyone yet it's going into my sons veins.
But that I have to say was not the worst thing I witnessed today.

When we went into the treatment room the doctor inserting the line just didn't get it first go, I truly hate that. Yes, I understand they can't be perfect but when they insert a needle into my two year olds arm and spend Ages moving it around under his skin trying to pierce a vein with him screaming at the top of his lungs, anurse and myself holding him down, well, it's just bullshit. I was so disturbed by the whole process that I had to ask her to stop. I thought I was going to pass out, and not from the needle but from witnessing the sheer stress in my sons face and hearing his screams. It was truly torture. She went for it the second time and I wish I had of said no, for again it went on for ages and when I said "oh my god" out loud she knew I had had enough. Why did I allow this person to do this to my son?? I ask myself that many times. I have a voice, why didn't I use it and demand it done buy someone more experienced in that area? Or even more compassionate would have been better. at one point she told me "He would only feel it as it's going in he just doesn't like being held down?" Really? Honestly, if that was me and that was happening I would be hurting and completely stressed and truly, isn't that bad enough?
Poor little mite was so traumatized by the whole process that when they sent us upstairs to get it done by the guys in nuclear medicine he was really and truly scared and very upset. They strapped him to the bed to keep him from moving and that wouldn't hAve bothered him too much but when they took his arm he went nuts, screaming at me "cuddle mummy, cuddle mummy". Because he knew what was coming. Oh my god, what he endures is nothing short of a nightmare. It truly is no wonder he wakes up often In The night x screaming "no!no!"

Don't get me wrong he's had plenty of these lines put in and 90% are done so quickly and efficiently it's over really quick. Still awful, but quick.
But when it's not like that, oh my goodness it is just too much to bare. Someone so young and has absolutely no understanding of why? Its just heartbreaking. Really and truly it is.

At nuclear medicine the doctor there took his time, and I didn't care if he took all day finding the vein, as long as he didn't go searching for it when the needle was in There. And he didn't. He took his time, found it, put the needle in, done, over. Brilliant. Jayden was in my arms for that cuddle in no time after and my word, did I not want to let him
go. God I love him so much.

We then headed off to hiS hearing test and yet another not nice experience. Was fine for him as he got to sit on my lap and listen to sounds and when he heard on he turns his head towards it and Bobthe builder would light up in a box or Dorothy the dinosaur. Thinking that Mater would have got a better response but never mind.
There is so many things that bring me to tears in this whole process and this was no different. Sitting in the sound proof room with him on my lap and hearing the sounds but realizing jayden wasn't, was truly awful. His little face didn't turn to where they were coming
from and it appears he has lost some more of his hearing. He hasn't lost it all but high pitched sounds have completely gone more than before. I hate chemo, and cancer. It all truly sux. I so don't want to do this next cycle or the next one after that.

after the hearing test, all the bloods were taken and his dressing was changed on his broviac and we were them able to go home and make it home in time for the kids to finish school.

Jayden had fallen asleep in the car on the wAy home as he was so exhausted from the days events.

He's due to start chemo on thursday but I'm really worried as his counts are still dropping and he's no wAy near in good as shape as before. I spoke to the nurse and apparently that's fine. I call that scarey, not fine. Very very nervous.

I may have witnessed one of the many worse moments in my life today but Tonight I witnessed one of the most beautiful. Jayden and Luke went into the bathroom to clean their teeth and I usually help jayden but Luke Was so worried about the state of jaydens teeth as they are very yellow from the chemo that he insisted he do it for him. Jayden, whom normally kicks up a HUGE fuss when I do it diligently stood there with his mouth open while his six year old brother gave them a good clean, with a running commentary while he was doing it. Making sure jayden was listening to his every word, which of course he was. Beautiful. Truly beautiful. He brother loves him so much, as do we all.

Sunday, 2 September 2012

Fathers Day

Fathers day today in Australia, I never knew it was celebrated on a different day in other countries until I rang my dad from England on their fathers day when I was much younger and traveling. I don't remember what the date was there but I know it wasn't the same as here.

We decided after jayden was diagnosed that we would no longer celebrate these days with buying gifts but the way we think they should be celebrated and that's with the kids making stuff for dad and making him feel special. Lots of cuddles and love.

The kids woke up early, jumped all over him on the couch and gave them their carefully designed cards and gifts.

I sat there watching danny with them and wondered how he feels about father hood now. I've never asked him before but I'm sure it's not what he dreamt as a young man it would be. I wondered what he was thinking and what this day,this year meant to him. I know he hurts just as I do about our sons condition and I know he wishes it were different and that things were the way they use to be. I know he loves all his kids and even more so now (if that's possible).

Sometimes when i talk to him about how sad I'm feeling, he'll say nothing, and i wonder what he's thinking. Then after a while he will tell me about a moment he's had at school pick up or the shops or somewhere and I'm reminded He's hurting too. He's a quiet guy and he doesn't say much but when he does it's worth listening too.

I will never forget the night we were sitting in Luke's room and i think it was the first night Jayden had been home in four or five weeks and he was very, very ill. We sat there huddled at the end of Luke's bed (the kids were with nanna) and had the saddest conversation we have ever had in our lives. I knew at that moment that we were so together on this and nothing was going to stop us getting through this together.

It's been so hard on him but he always remains solid and never falls apart. I don't know how he does it and I'm sure he doesn't either. It's good for the kids though and I admire him for being able to do it. I try but sometimes it gets the better of me and a tear or two (or thousands) will come flooding out while I'm doing a mundane job like cutting carrots and it's all over for keeping it together.

Its late now and I'm laying next to my three favorite men in the world again and they are all snoring, again. Of course, I'm not. Jayden is squished right up next to me making it impossible to write this comfortably but I'm not moving him in fear of waking him.

Fathers day is special to dads and to their kids and what a true gift and honor it is to be a dad ( and mum of course). I think sometimes we take that gift for granted as many people are not so lucky.
I look at jayden and hes only two, but will he be one of the lucky ones. Will he get to grow older and be a dad? Most of us don't have to even think about that growing up, as it was a given that we would grow up, but not Jayden and many like him. Will they celebrate their fathers day one day?
I know if he did he would be a great dad, because his dad is. He would love his kids just as his dad does and he would do anything for them, just as his dad would. I know he would have some challenges along the way but i know he would overcome them as his dad has in his life. I hope he gets to be that dad and sit at a table with Danny and Luke One day And they all talk together about dad stuff.
That day, would be a great Fathers day.