Tuesday, 29 July 2014

The last couple of weeks

Another couple of weeks have passed and I haven't made an entry. But mainly because in doing so it would take my time away from my kids and for some reason most nights I've been so exhausted I'm been in bed early with the kids.
Not sure if it's stress or emotional exhaustion but I feel tired a LOT lately.

Anyway, enough about me and back to Jayden. He's been great. He's finally shaken his dreadful cold but still has a cough yet never letting it get the better of him. Little champ.

We are currently on our way to the hospital to see Jayden's oncologist to get the final report from his MRI and even though he's told us it's clear, I can't help but feel extremely anxious about the report and all the finer details. That may be why I had a panic attack this morning and feel so crazily wired today.

Jayden of course is sitting happily in the back of the car talking to himself and playing an imaginary game. Love his ability to keep himself so amused. We are going a different way to the hospital today as he now gets very anxious when he sees the streets he is familiar with that we go down towards the hospital. Also we can get a coffee this way so that's a bonus. Not that I need to be anymore wired!

The last couple of weeks have been good. Sad to see kids go back to school but happy they are all well and happy. Jayden didn't go back to Kindy the first week as he hasn't been well but Monday this week he did and had a blast of course. Love the Kindy teachers there, they are so kind and very, very special people.

We have been spending as much time as possible together as always and enjoying every moment. Here's some pics of my little man having fun with a soccer ball at the park the other day ...















And us in the morning.....
Always the first to get up!



And yesterday at scitech...



And his brother and him playing the other night under the covers...













Jayden truly makes the most of everyday and like all children, lives in the moment. That's definitely difficult to do as an adult and although I'm trying to, the thoughts of the future still cloud my mind.

We are now at PMH waiting to see Jayden's oncologist. Feeling extremely anxious.





In doctor nicks office.

We are now on our way home and have had Jayden's appointment with Dr Nick. Everything was fine with MRI.
Hoping and praying it continues to be that way, always.

Thursday, 17 July 2014

What began as a shocking start to this week with my anxiety and worry about Jayden's approaching
MRI and our family dog Lucy eating rat bait, has wonderfully ended on a high note.

Jayden's scan looks good which is such a relief that words alone truly can't explain that elation. He was so very brave as well. When I talked to him the night before about it he wAs really worried. In the past he's been concerned but this time he was really worried. He was especially concerned about the "mask" and cried himself to sleep pleading with me for him not to go. I was not prepared for that at all as previously he didn't mention much about it. I tried to console him and my heart broke knowing that he has no choice. Poor little mite. I so wish we had our old life back where he was the normal little boy he use to be, with no worries. I will always wish for that.

on The day of the scan we all woke early as we had to be at the hospital for 6:45 am. Jayden luckily remained asleep while the rest of us busily got ready. When it was time to go I quietly woke him up, scooped him in my arms and we all piled in the car. Fortunately the kids distracted him on the journey there but once we arrived he started stressing and asking to go home.

We were lucky to have an exceptionally wonderful anaesthetist who I explained to that Jayden was really stressing about the mask. She told me she completely understood as when she was a child she had several procedures and the mask experience wAs so scarey for her that she never forgot it. Terrible. So she suggested just resting the end of the gas pipe near his face. So thats what we did. Talking him through the process, Jayden was so good. So brave. He never cried, first time. He just snuggled in to me and went to sleep. That moments always makes me heart break. I hate doing this to him and always will, but this was definitely the best one we have done.

And then the wait....

Hate that time where I wait to see my little man again and stress like mad about hearing the results.

An hour or so later we got the call that he was out. We made our way to the waiting room where we waited to be told he was awake and I could see him.

While we waited the anesthetist came in to tell me his oxygen levels dropped shortly after he went under and again at the end. She was concerned about his cold as well as in the MRI it showed a lot of congestion in his sinuses and loads of green mucus game out of his lungs when she removed the pipe that goes down his throat. (I should no all the medical terms for all this by now but I dont).
Anyway she made a record of the oxygen dropping incidents.Scarey, but apparently not uncommon.

When I was finally able to see him he was coughing and spluttering and not happy at all. The desperate need to scoop him up and make it all better is overwhelming and I couldn't get to him quick enough. Hugging him so tight and holding back the urge to cry. I hate seeing him upset in anyway at all. And wishing he didn't have to do any of this. That wish will never go away.

Then the wait for results....

Later we were told the scan looks clear. Yah! So relieved, words just can't explain how relieved we all were and are. Like a massive breathe of air I feel like I've been holding in for months just got blown out. And the tightness in my chest no longer so painful. Biggest relief ever.

Hugging all my kids and so very grateful for each and everyone of them. Today is a happy happy day.

And..........

Lucy our dog finally turned a corner yesterday and has stop urinating blood clots. She's also barking again and her sprightly self. So happy to see her well again.

A brilliant and wonderful end to this week. So happy all my family are well, couldn't ask for more.







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Monday, 14 July 2014

Sick pet and homeopath visit

I had to take My beautiful dog Lucy to the emergency vet centre yesterday as she was bleeding from her behind and very uncomfortable. The vet told us after an ultrasound that they thought she had cancer and that it may be best to put her down. They did however have to run a few more tests. So I was left sitting in the veterinary consultation room on my own, after hearing this news, completely devastated. When emotions flow these days I seem to have an abundance of them. I feel so damn raw all the time. Like layers get peeled back when faced with something like this and my raw emotions exposed, all of them.

So I sat there with my head in my hands just balling. It's times like these that I Seriously feel like I have no ability whatsoever to cope anymore. The hardest part was sitting there alone in that room. Left alone to potentially make a huge decision and I just didn't want to make it.

Sometimes I feel like a child and wish that someone else was making the big decisions for me. That they knew the answers and I never had to second guess anything I decided. And these days I feel like I have nothing left. Like I used every last drop of emotional energy and all that is left now, is a raw pile of mush.

After ten or so minutes the vet reappeared and said the blood tests show that she may have eaten rat bait and they could do a plasma transfusion and she could make a full recover. But , they still think there may be something not good in her bladder area. I'm sure she explained it all much better and in medical terms but that's the general gist that I got. All I could hear was she may make a full recovery and my mood of course changed instantly. I had to leave her there overnight though but hoped the next day would be good news.

A morning call to the vet and they said she needs to stay for the day but I could pick her up and take her to our own vet so that she was closer, which I did. It was so nice to see her and put her in my car all snug in her bed. Was so worried about her . So I had to leave her again at the vets but this one she is familiar with and wasn't as stressed. She had to stay there for the day.

Later I had to get to an appointment with Jayden.

I took Jayden to a homeopath this afternoon. A lovely lady we met recently recommended him. We missed our first appointment because my mind was like mush and I forgot but today we made it.

So Jayden and I headed out at lunchtime for his 1 pm appointment. When we got there we entered a small waiting room that had a reception desk but with no one sitting at it. There were two doors to the side which were both closed and I could hear talking behind one which was a consultation taking place. So I sat down on one of the chairs in the waiting room and waited. Jayden swiftly found the toy box and busily went through it next to me.

We hadn't been sitting in there long when another lady walked in and also sat on one of the chairs. She was an elderly lady that I picked to be under 70 but later found out she was over 70. Kind face, kind and welcoming smile.

She spoke first after smiling at Jayden and said "what a lovely age that is" referring to Jayden . I agreed but told her I also thought all ages were lovely, she agreed . We went on to talk about how many kids we had etc. she then looked at me and said "you are so tired". "Yes" I said. "Emotionally tired -also" she said. "Yes" I replied. I briefly went on to tell her about What's happened and as I spoke she nodded with understanding. She then said "I know exactly how you feel love. My daughter was diagnosed with leukaemia at 14 and we travelled that journey for three years." I went to ask her if she was still with her but before I finished my sentence she bowed her head and slowly shook it to answer no. She then said. "And no matter how long time passes the feelings never change. It was her birthday the other day and it feels the same as it did all those years ago." I felt so sad for her. And my heart ached.
I have no doubt she will take that pain with her to her grave as does any mother walking her shoes and I felt the tears well up inside me.
She saw this and said " he must always be happy, and you must look after yourself".

Just at that moment the man we were there to see came out and told us to go in. I walked in with Jayden and felt like a big ball of emotions. I so wanted to sob. I didn't and when he came in we began talking about why we were there.

I really liked this man. I felt confident he was a good man and had Jayden's best interests at heart. He was patient and most importantly, Jayden liked him too.

We came home via the toy shop. With the MRI approaching I'm stressing to the point of craziness and I'm so worried Jayden could miss out and so another toy was bought today. Luckily Jayden doesn't get upset when I tell him he can't have the big truck he wants but a smaller toy is more in our price range. It doesn't bother him at all. No complaints just looks for something smaller. So we left with a toy sandwich maker instead! Loves his cooking. He was so chuffed but disappointingly it wasn't working when we got home so another visit to the toy shop tomorrow, which I'm pretty sure he will be happy with.

When we got home I rang the vet again and was able to bring Lucy home. When she came home she started looking ill again and has still got blood in her urine. I rang the vet again and there is real concerns about her bladder . He said if it is her bladder there isn't a lot he can do but with pain killers we will see how she is in the morning. It has been a huge expense one that we really can't afford and one that my husband and I were not in agreeance with but I sat down at the kitchen table remembering that moment in the vets where I had to make the decision on whether or not to go ahead with the expensive treatment or have her put down. And I thought, If given that time again I know I would not have done it differently. To have her home with the kids and be with us was worth every penny no matter how long it will be for.

Now I'm feeling very emotional. I feel so raw right now. Like I'm walking on that damn tightrope again.

And I love my dog dearly but all I can think about is Thursday and hope and prAy that everything is ok.


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Sunday, 13 July 2014

Approaching MRI


Friday night

Everyone's asleep and I'm still awake. I've had quite a number of restless nights which isn't unusual particularly when we are leading up to an MRI. So has Jayden.

Jayden isn't well with a cold and had a particularly awful day today. He also has this rash that appeared on his face not long ago and keeps flaring up. I'm pretty sure it's eczema. It's been bothering him a bit and today it was really red. Steroid cream seems to keep it under control but will talk to doctor this Tuesday as we have an appointment to see our GP. I'm concerned about Jayden's cold and the fluid in his ears. It all seems so damn trivial though compared to what he's been through and, I so wish it was all we had to worry about.

What's worrying me of course and what's completely got me on edge and super sensitive to all things Jayden, is his MRI this Thursday.
I mentioned before that Jayden had a particularly bad day today In That his balance was very off. He had at least five falls and completely out of character wet his pants at least four or five times.

I'm finding it hard to write this post let alone post it. As I write my fears down now they become even more real. By not writing or talking about them i feel like I'm either in denial or it's just that I try to hide them so far back these days just so I can cope. I feel them barreling back in when something happens like Jayden falling or wetting his pants like today, anything out of the ordinary. and the fear that comes with that is truly like nothing you could possibly imagine. The sheer feeling of dread in the pit of my stomach is sickening. I want it to go, but there is nothing I can do to stop it. I just so want for everything to be ok. Please make it be ok...

He woke the other morning at 4:30 and jumped out of bed screaming for me. He must have still been asleep as I was laying right next to him. I got up as quick as humanly possible and caught up to him, scooped him in my arms and reassured him everything is ok and that mummy is here. That She will always be here. He was sobbing. So scared. My heart ached. Big time. I laid him back into bed with me and stroked his head telling him over and over that everything is ok, mummy is here. It took him sometime before he calmed down and fell back to sleep. I laid awake next to him, with that deep feeling of dread in the pit of my stomach. So scared for him. So very scared.

I hope with all my might and every inch of my being, that everything will be ok.....



Wednesday, 9 July 2014

5:00am in the morning.,,
Jayden wakes, "mum, can we get up".
Me: "no darling it's very early, can you go back to sleep for a little while"
Jayden: "ok mum ". He then gives me a kiss on the head and says "goodnight mum. I love you " and goes back to sleep.

Love my little man. He's as sweet as can be.


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Saturday, 5 July 2014

Brothers, MRI and dentist appointments





Jayden and his brother Luke grow closer everyday. The older Jayden gets the more the two play together and enjoy being in each other's company. I love hearing them together. Their laughter, their cheeky whispers and the love they have for each other is priceless.

I am so grateful they are both with me and are having this time together. I hope and pray they get a lifetime together and I worry like crazy for the future. Every laugh they share and smile brings me so much joy but sadness too. There will always be that flip side in my head, but I so wish it wasn't.

Jayden's MRI is next Thursday and as always, I'm worrying like mad. Watching him ever so closely, although, I always do. The slightest movement or look that seems unusual sends me into a spin and every time he coughs I pray it won't follow with a vomit. So worried about my little man.

Every night when I put him to bed and lay with him till he sleeps I pray and hope for a lifetime. He snuggles into me every night, sometimes with his head resting on me and I know to be so grateful that he's there. I watch him long after he's fallen asleep and wish, pray and hope that he will be ok. That he will be the 10%. I so hope with every inch of my being for that.

When he wakes in the morning it's always with a smile. He gives me a huge cuddle and asks if we can get up. I'm never annoyed by these early wakes as I know to be so very grateful to have them. He's always so happy to be up and ready to play straight away. I love his enthusiasm.




Jayden and his brother had a dentist appointment this week and they were both so very brave. Luke had a little work done that he struggled with and Jayden wasn't too keen to go next after watching Luke stress. We were able to convince Jayden to have his turn and for him to sit on the dentist chair. I sat next to him and held his hand. I told him everything was going to be ok. When the words came out of my mouth I instantly thought of all the times I said those words to him, holding his hand Whilst holding back my tears as I didn't know if it would be. This time I knew it was going to be ok and what a difference that feeling was. He saw it in my eyes, he knew he was going to be ok and I could confidently portray that. I then thought of all the times that I said it, and didn't know. The times where I was praying I was right but not knowing, and how he must have seen that doubt in my eyes. I felt so sad thinking of those times.

So many moments we go through, takes me back to those days. It's impossible not too. They are times that will stay in my memory forever, live forever in my nightmares and has shaped the person I am today. All my family.

For every normal thing i do like a checkup at the dentist with the boys just isn't normal for me. Because normal just doesn't exist anymore. As Jayden is being examined the fear of the future floods in. I worry that we may not see his baby teeth fall out and new ones come through. Any talk from the dentist about his teeth goes in one ear and out the other for that doesn't even come close to what I'm concerned about. I go through the motions of having him checked as I should, but it's the very least of my worries.

No matter what I'm doing my mind flicks back to that fear.

I've found however that I've got better at hiding the emotions that go with that. So that What I'm thinking and what you see are two very different things.
I'm managing to talk to people at my sons school now that I once couldn't do before. Blending back in, has been really challenging. Talking about stuff that bared no relevance on my overwhelming feelings of sheer sadness and fear of the future was impossible to do. Now I can do the chit chat. I still hurt and wish I really wAs the person I'm portraying. I wish I really did care about the weather, sports carnivals and cooking but there's only one thing I want in my life and that is for Jayden to be cured. For him to grow old with his siblings and me watch that. That's all I want.
I so hope and pray for that.