Wednesday, 8 August 2012

Day one

Jaydens currently siting on his hospital bed watching cars the movie on a portable DVD player. He's just starting to get into movies and 'mater' is his favorite character. Thought it would be 'McQueen' like his brother but he seems to prefer trucks at the moment. Am sure that will change.

He had a good night sleep considering how many times he was woken and for the first time since we got back he slept in until 7:30am, amazing. I was awake but happy to hear him sleeping peacefully squished up next to me. He's a bit bigger now so sleeping together on the single bed has become very snug. And he always sleeps in the middle, rascal.

The doctors a milling around at the nurses desk along with nurses and you wonder what they are talking about if medical at all. Kinda reminds me of road works when you see the many workers leaning on there brooms or shovels but never seeming to really be doing anything.

He's fasting at the moment as they have to do another Echo on his heart as the one they did in the states didn't take a measurement that is necessary for the chemo to start. They will need to sedate him to do this and while he is under they are going to change his dressing of his broviac because it has quite a bit of blood around it from the seeping and then bring him back to his room to insert the catheter. Hopefully the sedative would not have worn off by then and he will be none the wiser. I was advised by a fellow cancer mum not to be there during this process and if he is sedated I will definitely take her advice. They assure me though that if his sedation is not still effective they will give him more before doing the catheter. I hope this will be so. I'm hoping it will all go ok and not be too uncomfortable for him.

It's now a couple of hours later and he has been given his sedation but it's not taking. He's fighting it and having a huge tantrum that seem to be lasting a lifetime. They have now decided to move him to the treatment room and do it there. Sometimes I feel like no one is really certain of everything here. One minute it's a certain way and the next it's changed. Makes me very nervous.....

Another hour or so has passed and he is now sleeping with the first lot of chemo pumping through his veins. This is all truly fucked and sometimes i just don't know how much we can all take.

The sedation wasnt as effective as i imagined and there was no way i was leaving him when the catheter was inserted. It was catheter traumatic and he screamed for what seemed like hours afterwards. For the first time since this journey began i had to leave him with the nurse while i walked away to breath. He had been screaming for what seemed like an eternity and i just had to walk away. I haven't sobbed so much in ages. How exactly do i see the positive side of things as someone once wrote here, when my son is screaming in pain and all he wants is for me to take it away. Do i smile and say well, at least your alive? Mmmm? Don't bloody think so. If you walked these shoes you would know that none of this is fun and if you expect to read a happy entry then go somewhere else. Yes, I'm angry now. Angry at everything and most of all angry at how bloody unfair it is that my innocent child has to suffer like this. And he's not alone, this whole hospital is full of screams from children and mothers anxious, stressed and beside themselves with worry. Walk their shoes and then comment on how we should be more positive. Walk their shoes and then see how easy it is to smile.
I'm so fed up with this journey and I'm so fed up with watching my child suffer. I'm fed up with keeping it together and I'm just fed up.

This sucks.





30 comments:

  1. I'm so sorry Leisl. Scream, cry, rage, vent, do whatever you have to do. Because it IS shit, and none of you deserve any of it. I think what you guys are going through is about as bad as it gets, and I think you are amazing for even getting out of bed each day. Sending you strength and hope. I wish there was more I could do.

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  2. I can't even pretend I understand your feelings,I wish there was something positive I could say to put your heart at ease,but I don't understand either ,I will say I commend you on the Love you have for your son,So many Moms dont! I have not and never will put anyone over my children,my son is 38 years old and a acoholic,everyone has put therself distant from him and dont understand why I put up with it,I live with him im a widow of 7 years but when I look at him I see my baby in those eyes,he has a diease,if he had cancer I wouldnt walk away and I wont now,hes so sweet and kind not mean,I just love himm all I can while I can,I know you have been so strong so many times and feel defeated sometimes but I know you have fought this battle it seems forever but as all I can do for my son is pray I pray for you and your family like most who follow you do,I just wish I knew what to say,my heart holds a special place for Jayden,he come into my heart left footprints and it will never be the same,your a precious family and no its not fair but know Im thinking of you and praying always....
    Kathie Lea
    XoXo

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  3. You are completely right Leisel, I too read those "be thankful" comments and was really pissed off when I read them!!!! I have tears streaming down my face as I write to you and I want so much to say "hang on I'll be there in 20 mins I'll fix everything" but it is just not like that.... God bless u Leisel and your gorgeous little boy- Perth loves u both so much xxxxx

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  4. I wish I could take away your pain Leisl. My heart is breaking for you and jayden right now. Always in my thoughts. Cassie

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  5. A child is a gift as you of all people are aware, to love, cherish, care for. Leisl I am so pleased Jayden has such a wonderful mum to support him through his treatment. Us mothers are the punching bag for emotions, sicknesses, pain as they know we will always be there - as you will. Take care my lovely, it is very tough and so are you. Sharon xx

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  6. You are absolutely right..alot of people don't understand and we can never expect them too. I lost my child to cancer and although it was the most traumatic experience I could ever imagine, I can understand that people who haven't been through it WOULD say, think of the positives. It scares alot of people. I don't think they are having a go at you and I am sure it is not a personal attack, but we cannot expect them to understand.

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  7. Be a bit careful about what you say on a public blog Liesl. There are many people who have stopped reading it because of the swearing and comments. You cannot expect people to understand what you are going through, and they have a right to express their opinion, as long as it isn't derogatory or abusive. There are some people (NOT me) who are considering reporting you, so just be careful. I totally get that you are angry and frustrated, and have no idea what you are going through but not everyone sees the world through your eyes and may consider your language and comments offensive.

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    1. Dear Anonymous, this is a public blog but no one is forced to follow it! So please leave Leisl to write whatever she needs to. This blog entries are very important not just for Leisl but also for her family & friends.We can pick up on when Leisl needs us the most as it is very hard for her to communicate otherwise. For the people who are offended by the language please stop following now because it's going to get a whole lot worse before it gets better!!! If you have a personal complaint you are welcome to contact Leisl directly on Leislmales@hotmail.com. Thank you Nadja

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    2. If you find the comments and language offensive then stop fucking reading it!

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    3. Wow Zulie, you're intelligent. You don't even know how to speak, and no, I am not the commenter above.

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    4. Please let's not make this a "hating" blog! Let's just leave it at this. Otherwise this blog will have to be made private which makes it much harder for everyone to follow. Peace xox

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    5. HEY ANONYMOUS,

      SINCE YOU HAVE SO MUCH TO SAY AND ARE SO INTELLIGENT, WHY DON'T YOU POST YOUR NAME SO WE CAN ALL THANK YOU FOR BEING A GREAT PERSON?

      PEOPLE LIKE YOU MAKE ME SICK. YOU'RE A COWARD AND NEED TO HAVE SOME REAL PAIN OR LOSS IN YOUR LIFE. LET'S SEE IF YOU CAN HANDLE WITHOUT SWEARING.

      People across the world are pulling for Jayden and want to help Leisl in anyway they can. You are not helping anyone. You are self-centered and frankly
      I consider your comments offensive.

      It must feel really good to sit behind a computer and cast judgement. You must be better prepped for your day knowing how much better of a person you are.

      Do the world and the Stones a favor by stop following the blog. Oh and fuck off.

      Hugs,

      Maureen

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  8. I think the commenter the other day was clumsy in saying something that was meant to be positive (ie, at least there are avenues of help available in the States, etc that you have been able to access - which is an awesomely good thing!). I *think* it was meant to be framed that way, but unfortunately came across poorly. I hope people can look a what was (hopefully) an underlying positive note.

    As for the commenter above relating to swearing, I'm not sure what you're trying to say exactly ? When you hear swearing or offensive language on a TV program do you report it ? No. Because you're freely able to switch channel to something you consider less offensive. I suggest it might be simpler to do the same here as your comment above adds no value to an otherwise extremely supportive and helpful commenting culture...I hope you (or "some people") don't take that offensively!

    Lastly, Leisl, I'm still sending those good vibes over from the UK to the little man, and thinking about him all the time. Ommm ommm...... x

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    1. Well said Paul. I think it was meant to be seen in a positive way too. That's the vibe I got when reading it.

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  9. REALLY REALLY REALLY !!!! I have a two year old boy and he is healthy and well and my worries are "what am I going to make for lunch", I cannot empathise with Liesel, I can very much sympathiose with the Stone family, because being a Mum of two young children I have sat down for many hours and thought of their situation, cried for Jayden (actually sobbed) and really felt pain for them....so I can only imagine the pain that Liesl endures EVERY second of every day, not sleeping well, not feeling happy due to worrying about her son's survival (do you understand that)and Jayden's daily traumatic experiences (at TWO)....so whoever you are that made that very silly comment about swearing and offensive comments (which I really think is totally out of place when you try imagine a houndredth of Liesl's pain), just sit down and try and put yourself in this brave woman's shoes....try very hard because if you do you really would commend her for venting this way it probably is what keeps this family sane and I would also be rather ticked off if my son was fighting for his life at two years of age and someone told me to be positive...please people lets just give the Stone family love, prayers and support.

    Sent with respect to all, just someone who feels very strongly about helping and supporting this wonderful family.

    Natalie Jehring
    WA
    A proud supporter of Help Jayden Stone !!!!!!!!!!!!!!!

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    1. I see what everyone is saying, but I agree with the person who made the comment about the swearing. I fully support the Stone family and all they are going through. However, people on this blog are telling others to simply not read the comments if they don't like the swearing. Have you ever thought about the fact that there are those that want to follow the blog and care deeply about Jayden and his family, but are offended by the language. And this is NOT like television. This is real life. Grow up people. Whatever happened to manners and social etiquette? The "f" word certainly doesn't need to be used and if Liesl wants to vent her frustrations, she should do it in private with her family and friends. Perhaps send private emails, but I have to agree, a public blog is not the place.

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    2. Natalie, who cares what you think!! Why would Liesl want to hear about your 2 year old son, who is healthy? Talk about "rubbing salt into the wound"! By the way, you have no idea what you are talking about. I didn't make the comment, but you aren't helping, so butt out!!!!!!!!!!

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    3. A public blog which you choose to read on your own time. No one makes you pull the page up and read updates. If you cared deeply about them, you'd shut your mouth and jump in to help.

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  10. Guys!!!! Stop the bickering, please! I am not a family member or close friend of the Stones, but right now, there is a little 2 year old boy, lying in hospital, chemo pumping through him and he is fighting for his life. Let's just focus on him! I too agree that profanity probably won't endear people to Liesl and she shouldn't take her frustration out on others but let's just focus on Jayden. Try not to judge.

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  11. I apologize for my language. Leisl's anger and language is justifiable. Mine is not. They need all the positive support they can get.

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  12. Please read the "Blogger Policy". There is no reporting Leisl or any other people commenting using the f word. It's called freedom of speech and it applies to this public blog. Yes it's certainly not a favorable word but sometimes it's the only one that describes a certain situation best. Maybe we could try f+*#%, would that be better? And thank you for the support of the people who are offended by swear words but still staying on :-) x

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  13. As someone with experience in this field, this road the Stone's are traveling on is a lonely one indeed. Often, the only ones who understand are people we will never meet, on the other side of the world. You can never ever know the depth of fear and loneliness that comes with being a member of this club- this is one families story, about their journey, warts and all. This is the one place Leisl should be able to share her feelings- good and bad- without fear of judgement. The Stone's have much much more to spend their energy on than worrying about censoring her very valid feelings on her blog. If it was your child, you would go insane if you didn't have an outlet. No one can
    Possibly understand.

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  14. I am absolutely stunned that anyone would have the audacity to tell someone in Leisls position not to swear. As we discussed today Leisl people say the most stupid things, and I would say this is true of this comment. I have read the blog and didn't even notice the swearing but then maybe that is because I have been on the ward, and sometimes swearing is the only way to express yourself. The Stone family need our support and not stupid comments. People just amaze me. Stay strong and ignore the idiots xx

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    1. Swearing on the ward and swearing in this situation is completely different. You probably didn't notice it because swearing is part of your every day vocab. What has offended me, is not the swearing, but that PMH and Cathay Pacific, to name just a couple have been criticised. Just read today's blog where the docs and nurses were made out to be like they were sitting on their asses all day. I am sure they are doing all they can to help Jayden and yet she is still bitching and whining about them. I read another blog where Cathay Pacific were the target just because they couldn't upgrade the whole family to business class. Liesl is not a nice woman.Here are all these people trying to help her and Jayden and all she does is bitch about them. Shame on her. I just hope that the wonderful staff at PMH haven't read her blogs. They looked after my 3 year old son with so much care and never once, would I have the audacity to complain!!!!!!! Keep on doing a fantastic job PMH!!

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    2. SHAME ON YOU, YOU NASTY PERSON. People often wonder that same thing when they are waiting in line or stuck in traffic. Leisl's writing is simply a description of the thoughts that occured to her. The experience of watching her child fight for her life is surreal and she does a wonderful job at capturing it for the world. Many moms have told me that Leisl's blog helps them put words to the things they have felt and been unable to express. Go hug your three year old and be happy that you didn't have to watch him fight for his life day after day. What goes around comes around and someday you'll look back at this cruelty and think "Wow, I didnt' need to kick someone when they're down."

      Maureen

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    3. Just a response to Anonymous, when you live day and and day out of hospital and have to travel with your child across the World for treatment as our family has done also you have to do what is right for your family, it is very frustrating when you are trying to get somewhere to take care of your child the best you know how and you have a hard time getting there. It makes your blood boil to have that feeling of the possibility of not getting where you need to be and worrying about the pocket book at the same time. Cancer is EXPENSIVE and it is frustrating. Living in the hospital is terrible, your relationship with your family is like ships passing in the night and when you finally get to live with each other again you don't want it stripped away from you. I could go on and on, but I won't. From my experiences and as I sit here listening to my son's pulse oximeter in the back round while he sleeps with every beat is the reminder of what aweful brain cancer did to my son and the ever fear that it will come back and take me son away from me. So to everyone making comments, if you don't have anything supportive to say just don't say it, keep it to yourself, because unfortunately Leisl will live even when treatment is over every day with the constant reminders and the everlasting fear of recurrence and the life of her son. I did have the chance to meet Leisl and she is a wonderful women with band of Mommas here for her, I think you know who we are. Personally, there is only one word that fits the picture when the doctor comes in the room and says, your son has a tumor in the back of his brain......

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  15. I bet Leisl wishes her only worry in the world was the 'bad' language she was being 'forced' to read on a blog. Swear away Leisl.........what Jayden, you and your family are going through can only be described using the strongest language possible. Please know that the over-whelming majority of your blogs followers are here because we genuinely care about Jayden and don't mind a bit if you say f#*k. Love to your little man xxxx

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  16. If you are upset by how things are being expressed then stand behind your words and don't hide behind the anonymous.

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  17. I think Leisl will be really hurt & put off by this circus and there might not be any further blogs for a while!

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  18. Oh my darling Leisl - I so hope that u stopped reading these comments before they got too crazy & that u don't even get as far as mine but if u do just know that ur true friends r right behind u & ur family all the way! Swear away my special friend - those people who have the audacity to criticize u when u r down r not ur friends & u need not take any notice of them - they have no idea or enough self awareness to be of any help to u! Love u so much & I'm praying for u all every day xxx

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