Tuesday, 23 August 2016

MRI Results

 I'm so relieved to write that we were told yesterday that Jaydens MRI looks good. We don't find out all the details until we see his oncologist next week but for now I am so relieved to be able to breathe. My little man was so brave during the procedure. He hasn't been well with the flu and missed a lot of school but is looking and feeling a whole lot better now. 
So very relieved and so very grateful. 

Sunday, 21 August 2016

Jaydens MRI

Jaydens next MRI is tomorrow and I'm terrified. He was meant to have it last Monday but he was sick with a virus so we had to postpone until tomorrow. I'm really worried as he has been complaining of a sore head and telling me it's sore at the back off his head where his scar is. I'm truly terrified.
Tonight he complained of it again and not long after going to bed he vomited. As I cleaned up his vomit and gave him reassurance everything was OK, internally I was scared out of my mind. 
I spend so much energy burying the fears down deep within me that when something like this happens it's like opening a huge bag of emotions and they come flooding out. I can feel myself trying to desperately hold on to the hope that I've been grasping so hard on all these years. I so desperately want that hope to still be there, to always be there. I'm truly so very scared. 
I want to write more but I'm numb. Scared. Really terrified. 
I hope and pray with all my heart and every inch of my being that everything will be ok. That Jaydens scan will be clear and he will be ok. I hope and pray for that. 

Saturday, 25 June 2016

A beautiful man

I saw a beautiful man today that I haven't seen in years. I knew him before Jayden was diagnosed and I hadn't seen him since. He saw me today and thankfully recognised me. We had a beautiful chat and it really warmed my heart to hear that he had been reading this blog. He was so pleased to hear Jayden was doing well. 
I'm so grateful to have seen him again. He reminded me how important writing in this blog has been to me and how people like him, wanted to know how Jayden was. 

He told me he felt like part of our family and that was truly a beautiful thing to hear. I always remembered him as such a gorgeous, genuine and kind man and hoped one day I would see him again. it truly was so wonderful to see him and to also get a big hug from him. 

So I'm back writing today thanks to you, beautiful man. 
 
Jayden received his first ever school Merit Certificate today at his school assembly and I was so very proud. 
It was for "being a kind and friendly class member who always does his best". So very proud of my beautiful boy!

The other day he did his first edu dance concert as well and I was so overwhelmed with joy to see him up there. Oh my goodness it bought me to tears. He's not the most coordinated but he was trying so hard. I so love my little man. And I'm so very grateful to see him do this wonderful performance. 

His brother had his assembly today also which was equally awesome. It was made extra special by seeing my boys smiling at each other. Jayden just loves his older brother and so does Luke him. Very proud.
I have also finally got to the bottom of why my pictures can't be seen anymore! Apparently the app I was using closed without telling anyone and all my photos that I posted through that app are now lost. Devastated! 
Fortunately I have copies but it's sad they are no longer on this blog. 
So I'm now using a different app and hopefully they won't do the same. 
Here goes with my first post from this app. 
 
 

Sunday, 15 May 2016

So long....

It's been so long since I last wrote. I've had many a time I've wanted to or gone to but haven't. It's not that i haven't wanted to put my feelings down or a memory in writing but more a case of no longer in the routine of doing so. Other things get in the way and the moment is gone, replaced by the hope that the memory stays with me forever.

Jayden is in pre primary at school now and loves it. He turns six this Wednesday and we had a party with family and friends this weekend gone. He was so excited. We were and are. Milestones for Jayden are huge. Four years ago I never thought I would see this day with him or any day we have had before and I feel so very blessed. Nothing is taken for granted anymore. We are so very grateful. So very grateful to see him blossom into the awesome little boy he has become. He has so much personality, yet such a gentle sole. He loves to play with girls just as much as he does boys. He will sit for hours with his girl friends playing Sylvanian families just as he would cars with his mates. He has made some beautiful friends at school and has some truly beautiful teachers.

Jayden it such beautiful company at home. He loves to help everyone out where ever he can. He's the first to jump out of his chair to help me with the groceries or come with me to walk the dogs. He'll help me put the clothes out on the line and take them off when they dry. He will try to help with everything; mopping, dusting, vacuuming, washing the dishes. I think it's just as much the helping as it is being along side me that makes him so keen. He's my little shadow and I love him to bits. Like all my kids they are my life and the reason I get up every morning.

Things financially for us have been challenging lately and I've had to go back to work like most people, it's difficult to live off one income. It's been nice but also weird to be back at work and it took me quite sometime to actually get work. Fortunately I now have a job and fitting it in with school drop offs and pick up is always a challenge as it is for all mums working. I'm finding it weird as it's another step in trying to fit into a new normal. Our lives will never be as they were so returning to work is very different to how it once was. Most people have no idea what we have been through and I find myself not really knowing whether that's a good thing or whether I should be blurting out our past. Part of me definitely wants to be anonymous because anonymous almost makes it like it never happened. But the other part knows it happened and knows how raw it still is and will remain forever to be. Part of me feels that when people know then maybe then they will understand me better but then another part knows unless you've been through this you will never truly understand.

I find myself these days still stressed. Still anxious. Still a basket full of worry. I think I'm better at containing it but not sure if that's a good thing. I find I'm still very easily upset....more sensitive I guess is a better way to say it. I try to convince myself that I have thicker skin now but when something crops up that pushes the buttons that keep me together, I collapse in a mess. It's as if I no longer have a middle ground....all or nothing now. Im fortunate that I have a partner that understands my crazy and talks me through it with me. Although I know he doesn't understand me completely, he's willing to be there and that's all I can ask for.

Other things that crop up unrelated to Jayden seem bigger than before. I feel like I no longer have the coping mechanism left for extended family dramas or friendship dramas. It's all too overwhelming and I feel like I want to hide from it all and remain in the safety net of my family and my home. Is it better to just shut those out that affect you emotionally than to try and sort it out. Once upon a time I would work hard to work it out. Now I find myself doing the opposite. I don't want to waste emotional energy anymore. I just want my war in my head to find peace.

Today both the boys are unwell with a virus. Having them home together is pure joy. Even though they are not feeling the best they still seem to find the energy to laugh and play together. They always manage to be sick at the same time....they seem to like sharing their viruses and time it perfectly so they are both home at the same time.....not completely sure yet if that's on purpose or coincidence?
Either way I'm just happy to spend time with them both.

Layla is away on school camp and I really miss her. I really miss the estrogen in the house and our late night chats.

I haven't been sleeping very well at the moment and finding myself waking in the early hours of the morning not being able to fall back asleep. Not sure if it's a hormonal thing it the racing of my mind even in dreams that wakes me. It causes me to be tired and begin the cycle all over again for the next night....is that insomnia? I don't know.

Anyway I'm going to finish her and post some photos of Jaydens birthday celebrations. I'm hoping they will post as I've been having difficulties since I made this blog private. I do wish I was more computer savvy.
Nope it's not working. I can't post the photos. Shame :(




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Wednesday, 13 April 2016

Recent MRI

Jayden recently had an MRI. It was earlier than the one he was due to have in May because he started to show some worrying symptoms. We were so worried. Fortunately everything is fine. We are all so relieved and can breathe again for a while. I will never stop worrying but for now I can breathe.

I can't sleep. I miss my mum so much when I get these moments where I can't sleep and desperately need to speak to someone who understands me. Through all of this I just wish I had her around. Because no one understands me like she did. I'm feeling so emotional and my head is spinning with anxiety and I feel as if I'm going crazy.
Through all of this I'm just not functioning. You'd think I would be by now but I feel as if a part of me (the bit that controlled coping) has broken, completely. And now I'm left with what's left.
I really feel like a crazy person. Seriously, my mind is so messed up sometimes that just simple everyday functioning is difficult. Not always. The last couple of weeks have been good but as soon as something comes up in my life that's the least bit stressful I tip. Right over. No coping mechanisms left at all.
I wish I could just snap my fingers and all would be ok.

*******************
I wrote that entry two weeks ago. I had hit a wall emotionally. I had been trying to ween myself of my antidepressants but in doing so I just dived deep down into a black hole. It took me a while to realise I needed to go back on them and I have done so. I think I just needed to accept that our new normal is not easy and I can't do it without help.

Jayden is doing well, we had a lovely Easter. He was so excited Easter morning it's such a beautiful time. I'm so very grateful.
I packed away the Easter decorations the other day and always feel sadness. The sadness is the fear. I don't even want to write down what I fear because it's scares me to do so.....that probably sounds crazy.

Today is Tuesday and I'm in hospital after having surgery to have a varicose vein in my leg removed...ouch. I had to stay in over night and danny came in last night to visit with Jayden and Luke
Jayden little face was so full of concern when he saw me. He looked so very worried. I love my boys so very much and my beautiful girl. It was only one night but I missed them. I missed snuggling up to my little man and kissing all three of them goodnight. Looking forward to going home today.


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Tuesday, 8 March 2016

More photos

Since I've changed the settings on my blog I'm having all sorts of issues posting things.
I had posted photos from our jurien bay holiday but for some reason they aren't appearing on my phone so I'm not sure if they appear anywhere else.
I so wish I was more computer savvy.
Anyway this is a great one of Jayden swimming in the beautiful water there. He had such an awesome time and was so eager to have a go at everything:



And us all taking a walk along the beach;


Jayden and the kids really had an awesome time and it felt so good to see them so happy together.
Love my kids so very much.









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Monday, 7 March 2016

Ive since seen the psychologist and I'm so glad I went. the most comforting thing about seeing her is to be told I'm not crazy and everything I feel is completely normal. She also told me how important it was to listen to my anxieties and not to simply shrug them off as a problem. She said that our anxieties are telling us something and we should listen to them and trust in them.
It really helped me to feel better about not getting Jayden to do the bone density scan and to query its importance. I have since found out its not completely necessary at this point so we can go without, yah for one less thing!

Jayden still however has to do some blood tests which we are hoping to do at the same time as his next MRI so he only has to have one needle prick. He gets a canular put in for the contrast and they will then be able to draw the bloods at the same time. Makes way more sense than taking him in for a special trip.

As a parent traveling this journey I am learning everyday. I'm really glad I'm asking questions as I go and querying everything. Thats not because I want to be a nuisance but because both Danny and I truly find it hard to put Jayden through anything more and if we can avoid something being done to him then we will without a doubt. I'm learning as a parent there are choices, I now just have to learn to continue to trust my anxieties and listen to them, and to trust my gut.


Jurien Bay

It's been a week or so since I last wrote and in that time we have been away for a short stay at Jurien Bay. It's a small town north of Perth on the coast and it's just beautiful. Here's some photos















We had a truly awesome time made especially awesome because we were all together. Since danny sold his business we are now able to go away as a whole family.

We Made some beautiful memories. It was Truly awesome.






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Monday, 29 February 2016

I convince myself I'm getting better. That the fear, anxiety and sadness is slowly diminishing but what's really happening is I'm getting better at burying it. It never goes away. Never.
Like visiting the Hospital the other day for Jaydens bone density scan...it all came rushing back, flooding my mind and overflowing my senses. It never goes.....

And today.... Jayden woke complaining of an ache in his leg. Nearly in tears he tells me it's hurting. I try to tell myself it's probably just growing pains or something else simple and "normal" to children his age. But he's not a normal child and my thoughts don't stay in the thought I want them to. Instead I'm stressing that it's something far more sinister....because I know sinister happens. I wish I didn't know that. I wish I still lived under that rock of ignorance to the nightmare of childhood cancer. But I don't....and every ache or pain or eye movement that he does sends me into a tail spin. My heart sinks, I feel sick to the stomach and my instincts to keep it together in front of him and not show him my fear kicks in. Brushing it off as nothing to him and telling him he will be OK is what comes out but inside I'm dying. Inside I'm scared out of my mind. I dropped him off at school today after I gave him some pain relief and he came good and wanted to go, i would have quite happily kept him home otherwise. As he walked in I noticed he was limping and my heart sank again. Please don't let it be something bad, please please please let it be something simple I could hear myself saying in my head. Am I praying.... Am I hoping with all my might that if there is a force that's a god then please may he be listening...yes indeed, I am.

The next day....

I picked up Jayden from school yesterday and noticed a big scratch down his leg. When I asked him what happened he told me he fell. I couldn't help but think it was his sore leg that failed him..panic kicked in and I calmly asked him "how's your leg? Is it still sore". He replied with his sprightly manner "it's great mum, it doesn't hurt anymore", relief swept over me only to be covered again by my focus now going to his eye. Every now and then I think his left eye is looking different and as he tells me his leg is fine it's like it's been temporally ticked off my "worry list" and I simply go to the next box and worry about that, which in this case is his eye.

He's off to school now and I'm sitting in the waiting room of my psychologist. I haven't seen Her for some time but with recent events with Jaydens bone density scan, I feel as if I need to. Hopefully she can help me make sense of it all although I'm pretty sure this is just part and parcel of this journey.

Saturday, 20 February 2016

Bone density scan

It's been a while since I've written in here and a lot has been happening. The best news is that we saw Dr Nick about Jaydens recent MRI and all was good.

Recently we had to take Jayden for a bone density scan. The idea is to get a base line for his development in order to keep an eye on any damage his treatment may have done to his bones. It's difficult to understand the importance of it when Jayden seems to be growing and his happy and content. But apparently it's necessary. A part of me though can't help but think that's it's just their way of making sure all their boxes are checked and I just don't feel entirely ok with that.

Slipping back a minute.... Jaydens extremely happy at school and has a very special friend whom he has connected with beautifully. In fact this beautiful little friend of his named Titan is what has helped me to leave Jayden at school as I know he is happy and that just means so much. Little titans face lights up when he sees Jayden and when Jayden had to leave early for appointments or is away from
School Titan gets very upset. He's such a beautiful little boy and it feels so good to see jayden has bonded with him and that they have such a special friendship.

Back to bone density scan....
So we had this appointment for the scan last week and Jayden was so upset about the prospect of it that we rescheduled for the following week, which is this week. All week I was stressing about it and unbeknown to me at the time, so was Danny.
I don't know exactly how to explain it . So I'm just going to say this.... Any procedure or time we have to go to PMH brings up emotions in both danny and I that we work so hard everyday to suppress. So if we can avoid any of the procedures and going to Pmh then we obviously will. We know Jayden feels the same and just wants to get on with his life like his siblings. We all do. And if we have to take him to a procedure or examination that doesn't feel completely necessary then honestly, there are no emotional reserves to do that. We just can't.

I pushed myself to go to the hospital with Jayden and All the way there I just wanted to turn the car around. My heart was racing and my stomach churned, anxiety was kicking in at an awful rate. We arrived on time and let the receptionist know we were there. The waiting made it worse and every inch of me wanted to walk out. I know this is not huge. Jaydens been through so much worse and we as his parents have had to watch and let it happen. But that's the whole point. We don't have anything left to do anything. Unless it's absolutely necessary for his survival there is nothing left in us.
The feelings I had sitting in that waiting room were the same feelings I had when Jayden was in the thick of treatment....anxiety, fear, sadness....all of them circling within me as if I was right back there. It's very real. I didn't want to be there, I know Jayden didn't and I just wanted to pick him up and run.
The nurse came out and spoke to us. She was truly wonderful. She understood how I was feeling and we had a talk about it and her words were "you are Within your rights as his parent not to do this. ". She suggested we get more information in the hope it would make me feel more comfortable. She gave me the paperwork and left and i turned to Jayden and told him he doesn't have to do it and we are going home. He fist pumped the air and excitedly said "yes!"

My sentiments exactly.


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Sunday, 3 January 2016

MRI time

It's 2am and I can't sleep. Jaydens MRI is in the morning and I feel as if I've had a hundred cups of coffee. I'm so Anxious and I feel sick. I just can't sleep. I've tried to think about everything I possibly can that's unrelated so I can give myself the rest I need but my mind keeps going back to what's happening when we get up.
Jaydens stressed as well and doesn't want to go. He was so unhappy about it when he went to bed.
I really don't have words other than I'm scared. Really scared.
Praying and hoping with every inch of my being that everything is going to be ok.


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