Saturday, 31 March 2012

Sunday morning

What started of as a fabulous day yesterday ended pretty crap. Feel like we are forever taking one step forward, two steps back. Jayden woke happy yesterday and lifted his head up high for the first time. He vomited straight after but still, it means it's not hurting as much so that's progress. He even stole a piece of toast of the trolley by the bed when we weren't looking and had a nibble! That was very exciting! But by lunchtime and after the family left he just went from bad to worse. No matter what drugs they gave him he wouldn't stop vomiting, every half hour to hour. Mostly mucus but eventually a lot of bile. Really miserable and it didn't ease up till late in afternoon.
But at least it did ease up and he got a break and I was able to give him a bath. Have to be greatful for the small things.
He cried when i picked him up for the bath but this time when I placed him in the water and let his beautiful head rest back on the towels I had made into a pillow for him, he was quiet. He laid still and I think for a short while was relaxed. I often wonder at these times what is going through his head. I hope that he is able to find some peace in this huge mess cause god knows its hard.
I Gave him as good a wash as I could then picked him up and wrapped him in a towel and gave him the biggest cuddle I could. Didn't want to let him go.
We dint have a very good night but pretty difficult in a four bedroom hospital room with three other babies all waking at different times and schedules for obbs at different times. Jaydens temp only went up once which is a great thing and he only spewed a couple of times.
It's morning now and I was so hoping to see the bright eyed boy I got a glimpse of yesterday but sadly he's not here today. I got toast organized with Vegemite on and sat it by him in the hope he will nibble some again,but he is not interested. He just looks at me with sad eyes and says nothing. He will come back though, I know it and I will be sitting here right by his side when he does.

Our new home

Kids and Danny came in today which was so nice. I miss us all being together. Jayden does as well and always cries when they leave. He is so aware now of where he is and where he wants to be and it breaks my heart to see him so upset when they leave. He just wants to go with them.and so do I.




- Posted using BlogPress from my iPhone

Friday, 30 March 2012

Wow!

Lifted his head for the first time since opp!!!!!




- Posted using BlogPress from my iPhone

Saturday morning

Jayden had a not so bad night last night, only spewed a few times which coincided with high temps cause of meningitis. Apparently it's not uncommon for him to still have high temps well after antibiotics start.
Bad news is though that he has a chesty cough and every time he spewed it was yucky mucus. So they are thinking he has a chest infection now! Bloody hospitals and their germs!
He is Looking happier in his self today. Beautiful little man.



- Posted using BlogPress from my iPhone

Friday night

Sitting by my little angels bed wishing we were home.
He had a bath today and didn't cry as much as the last one which I hope means he is not in as much pain. And I got my first cuddle since before the surgery- weeks ago! And it was so wonderful. I missed being able to cuddle him so much and having him snug in my arms again was so beautiful. I cried and promised I wouldn't in front of him but these tears were happy ones.
We walked down the corridor a bit before we had to go back to his bed and all the while he didn't take his eyes of me. It wasn't till we walked back into the room he started to cry. I think for a moment he thought he was going home. God I wish I could make that happen for him.
But for now I am going to look forward to tomorrow when I can have another cuddle.


- Posted using BlogPress from my iPhone

Location:Subiaco,Australia

Thursday, 29 March 2012

Friday cont.

I wish I could get to a place where I stopped asking why and thinking of what use to be. A place where I can find peace with all this bullshit.

Oncologist just been in. They are hoping to start next week. Poor little buggar will barely get a chance to feel good when he recovers from meningitis and then will be back feeling shit again with chemo. We will then be moving down to cancer ward next week.

He's asleep, looks peaceful. But miss my " little ratbag" my little man that use to keep us on our toes consistently. our rascal little son is now confined to a bed.
Wow this is shit!

Friday

Not much has changed since yesterday. He's still throwing up regularly and not eating. Still being fed through a tube in his nose. Still laying still and not wanting to move. But he will always look to me like the most beautiful little man I know. My little angel and the most couragest and bravest human being I know.
I stayed home last night with my kids and when I left him yesterday it was gut wrenching. I couldn't wait to come back in this morning to see him and his beautiful face. Every time I return and he sees me he crys. I know he's telling me how shit he's feeling and wishes I could change it for him and god help me I wish I could. When I left yesterday I had to keep going even tho I could hear his cries down the hall because I also had to spend time with my other kids who miss me too. Being torn between them both is so very hard and what I wouldn't do to have them all together again.
I sat in jaydens room last night and cried, wishing things could be the way they were. Bathing him with Luke, reading him a story by his cot, getting woken by him at night for a cuddle or a bottle and woken at the wee hours of the morning by him. I use to hate those mornings but now I would give anything to have them back.

Wednesday, 28 March 2012

Watching tv

My beautiful little angel watching tv with his dirty old trusty bunny.


- Posted using BlogPress from my iPhone

Thursday

We got news yesterday from the lumbar puncture results that jaydens white blood cell count has gone from 1100 to 300 which means the antibiotics are working so some good news.
Today he has had some stuff injected into him from nuclear medicine to check that his kidneys are working well and this test will be done several times during chemo to make sure no damage is being done to his kidneys. With this test he gets blood taken from him every hour for four hours.
His pick line was successful yesterday so they use that to take the bloods and administer antibiotics so it's not painful like when they take blood with a new needle prick every time.
Oncology doctors visited today and let us know once the infection clears they want to make a start. In some ways I am looking forward to moving from this ward cause so many patients come here but then leave the next day or a couple of days later while we remain. It's a constant reminder of how serious jaydens condition is. I figure that if we are down in the oncology ward we will be amongst other long term patients and I'm hoping that might make things feel more normal? If that makes sense? Can't really make sense off of any of this shit but trying to take one day at a time.
he's sleeping at the moment sucking on his trusty blue bunny. i love this little man so much. How does this happen? I keep asking myself why? But there is no answer. I try to stay strong but most days I'm not. I pretend for him, I don't want him to be scared.

Tuesday, 27 March 2012

Wednesday

Still waiting for jayden to have his procedure for pick line and lumbar puncture. Poor little buggar is so hungry, his feed was turned off in the wee hours of the morning and now it's afternoon. They can't give him any pain relief because he will be going under so he has to suck it up until they can get him in. So wrong. How does a one year old make sense of all this? I can't so I hate to know what's really going through his poor little confused head.

Wednesday

Today is going to be another busy day for Jayden. He is in theatre again to do another Lumbar Puncture and to put a Pick Line in. The lumbar puncture is to check to see the antibiotics he is taking is doing the job and the pick line is so the antibiotics can be administered without keeping changing the lines in his arms. Those lines have to be changed every three days where as a pick line can stay in for up to a month which hopefully will make things nicer for him.
He has to be on his antibiotics for at least two weeks so won't be home for Easter-gutted.
He's watching teletubbies as I write and seems content. My beautiful little angel, so nice to see him peaceful.

28th March

Its 5am and all I can think about is my son. I got to stay at home with Luke and Layla last night but I feel like I cant be the same mother to them anymore. While I am with them I cant stop worrying and thinking about Jayden. When they want to play all i want to do is cry. I'm trying to stay strong for them but they can see it, they know I am not their anymore in the same way.  How can I be? I'm watching my baby suffering on a daily basis. he hasn't seen the outside of his room in three weeks. He lays still because it hurts him so much to move and screams in pain when you move him. He has pressure sores on his ears and back from sleeping on them for so long. He vomits consistently, doesn't eat and doesn't want to. Every day some one is poking him, pricking him with a needle to take blood from him, almost everyday he has some sort of procedure. Hes so traumatised from it all that when ever a nurse or anyone he doesn't recognise as family or friends approaches him he starts to cry. Nothing about this makes sense, what did he do to deserve this??????

Sunday, 25 March 2012

26th March

Infection control doctor came this morning to let us know his antibiotics would be changed again as the bug in his spine is cultured and they know the specific meningitis. He also let us know that he will need to be in hospital for at least another two weeks while he is on antibiotics. They will have to insert a "pick line" tomorrow in his arm so the antibiotics can be administered over time without having to reinsert a new line every two to three days- all of which is hugely traumatic. This all means that it looks like we will miss out on joining the clinical trials as there was a window of 31 days from surgery that he had to fit into for chemo to start. At least that's one desision taken from us to worry about making. He's still vomiting heaps and not eating but the feed through his gastro tube is keeping him nourished. He's crying at the moment so this is all i will write for now.

Late Evening

He's asleep. My heart aches. I wish this wasn't happening to him.

Sunday

Jayden is currently fighting an infection in his spine. A type of meningitis. The doctors had to put him back on the morphine drip after two nights of screaming in pain and temps. He has two lots of antibiotics pumping into him every 6 hours, morphine drip, three types of medications to prevent vomiting which none of which work and medicine to prevent constipation and medicine to help his guts cope with all the chemicals in his system. This is truly a fucken nightmare that every second of everyday I wish I could wake from and no longer watch my son in pain.

In the beginning

7th March 2012
I don't even know how to begin such a tragic turn of events to my son and our whole family. I had suspected for so long that something was wrong but nothing had prepared me for this. Months of undiagnosed problems followed by weeks of vomiting that three different doctors kept sending us home with a " don't worry, kids get over these things in their own time". But on the 7 th of march in the middle of the night a gut feeling made me take him to PMH children's hospital in Subiaco. We were there for six hours and very nearly discharged when a fortunate shift change bought a new doctor to jaydens case. This doctor insisted we see her boss before we leave. in he came and sent us for a Ct scan. It was after this scan that we discovered he had a tumor in the back of his head 3 cm by 4 cm. Enter the surgeon 10 minutes later with the horrific news and photo of the tumor in his head. What follows in nothing but dread, fear and complete shock. How does one cope with such horrific news? I have no idea?
We were admitted to the ward and jayden given steroids to reduce any swelling and here begins the journey of our life now living at the hospital instead of our home. This is our home now.
The following day he had an MRI to determine if it could be removed surgically and the surgeons were confident. They also believed it to be not a "bad tumor"- tragically we would later learn what exactly a "bad tumor" was.
The following day there was fear that fluid may be increasing in his head so he had an operation to put a tube in it to drain the fluid- there is a name for this but right now it eludes me and who cares anyway?
Three days we struggled with this nightmare tube and his Consistent vomiting which hadn't ceased since we arrived and still remains to this day.
Tuesday the 13 th he finally went in for surgery. 7 hours later and he was in ICU.
The surgeon had good news that they had removed 99% of the tumor and for a very brief moment we felt it was going to be ok. 24 hours later he was back on the neuro ward and things were looking good. The following day the surgeon came in to tell us the tumor was AGRESSIVE. This is what we know to be a "bad tumor".
The day after that the oncologist, surgeons and two others came to take us away into a private room to give us the most devastating news a parent could receive. They told us jayden has an AGRESSIVE cancer known as ATRT Atypical Teratoid Rhabdoid Tumor. You only have to do a few searches on the net to find out how shit this diagnosis is. He has a less than 10% chance of survival even with treatment.
And that's where our nightmare began......