Forum Discussion

Michelle16's avatar
14 years ago

Life is Cruel !!!!

Hello to all of you lovely people

Well life really has been terrible for my family. I havent been on here as back on the 7th of June 2011 we recieved news that no parent wants to hear. My 3 year old son has a brain tumour. I was and am still gutted over it all.

He spent 10 weeks in Royal childrens hospital and now we are just home for a short break.

My precious boy is now in a wheel chair and is in the process of rehabilitation to learn how to walk etc and all life skills all over again.

The tumour got into his brain stem hence why he needs to learn to walk etc again. They couldnt get all of the tumour but they are hopeful in the MRI check up in October hoping they got enough that it will have cut the blood supply to it and if not he will need to start on chemo and maybe radiation.

It terrifies me that my bubba boy has to go through all this at a young age.

We have had him back and forth to Dr's since he was 9 months old when he had his first siezure and other ongoing issues and have been given wrong diagnosis all the time to what is wrong.

Had this of been picked up and not fobbed off all the time my baby wouldnt be going through all this struggle to do every day skills as he has to today.

In all of this going on YES I had big issues with my tissue expander and had to have emergency surgery as well in Brisbane. The stupid thing slipped from behind the muscle and was working its way out through my chest and ready to burst out  of my chest. Wasnt a pretty sight. They think it may have been like this from earlier on and thats why I had so many on going issues !!! Like I kept telling them it just didnt seem right on the left side as the right was completely different and so much less pain.

I just wish life could be nice to my family and let us live a happy long life all together with no more of this crap happeing to us.

My little man had to have 3 lots of brain surgery so far and it scares me to bits if he needs more.

Can I ask you all to keep him in your thoughts and prayers for a full recovery and as it gets closer to his next lot of check ups I will ask you all again. He has alot of issues to deal with now due to surgery like his eye sight etc has now been effected and he has a hearing problem as well now. This all is just so hard to see when the poor little guy just doesnt even really understand why on earth he cant walk etc now after all the crap he had to deal with in hospital as well.

Ill try and keep you all updated more as I know more. I am doing well after my last surgery and hoping to have it put back in around 6 months time. If it doesnt work that time round I am asking for both expanders to be taken out and not bothering with it all.

So I am sorry for all you lovely ppl who have been sending replies and tryign to talk to me over teh past few months I really havent been ignoring you all I just havent had internet access to vent my furry to you all. But I will try to catch up on it all over the next few weeks we are here at home

Bless you all xoxoxo

 

 

  • Michelle,

    Was so sorry to hear that things have all turned pear shaped on you. My thoughts and wishes are with you and your little man,  I'll keep my fingers and toes crossed that things turn around for you. I know it may be hard at this time but try to think and remain positive and most of all make sure you also take time to look after yourself too.

    Take care

    Kim

     

  • Michelle,

    Was so sorry to hear that things have all turned pear shaped on you. My thoughts and wishes are with you and your little man,  I'll keep my fingers and toes crossed that things turn around for you. I know it may be hard at this time but try to think and remain positive and most of all make sure you also take time to look after yourself too.

    Take care

    Kim

     

  • So sorry to hear your news Michelle....I haven't been on here in a while and hope that things are looking up for your little man!  Life is really cruel at times and no-one can understand why such a horrible disease is given to someone so young and innocent.

    My thoughts and prayers are with you and your family in what must be a terrible time for you all.  Keep us in touch with how he is going and make sure that you look after yourself as well!

    Louise x

  • Oh Michelle I dont even know where to start, there are no words of solace oor  wisdom we can offer you but I hope you know we are here cheering for you and your little man coz  this definately sucks!

  • Michelle reading your blog breaks my heart :( i can't believe on top of what you have been through your little boy is also having a battle with his life. I have a 3 year old son also and cannot even begin to imagine what you've been through and how you're feeling.

    My prayers and positive thoughts are sent to you and your little boy and family. I hope it is all good news for both of you from now on.

    Stay strong hun, you're an inspiration!!!

  • Oh Michelle nothing i say will ease your destress, i have sat here in tears for you and you little boy and family. i will pray and ask the guardian angels to help you all , my hugs to all of you, what is his name so i can light candles for him.

    where are you based? i send you all strength, there is so much i want to say but dont know how,

    i am  baby sitting one of our granddaughter Aaliyah who is his age and she asked why i was crying i told her a lady i know who has been very sick  like Oma was ,has a little boy who's 3 like her and he is very very sick like his mummy and Oma were but he has bad bumps in his head. and has had operations on his head to try and make him better, she wanted to send him a drawing  to help him get better,  but i said i didnt know where he lived  so i have just put her face on my profile so maybe you can tell him Aaliyah said she hopes he gets better. 

  • So sorry to read about your son. What a horrible thing to have to go through especially after your own health issues. As Cheryl said it's bad enough to have to go through all that you have gone as an adult let alone watching your child go through it. Stay strong and continue to venty your thoughts here. It's a great site and is certainly helping me. I'm not sure what your own story is but I'm thinking of you and your family.

    Our  thoughts are with you and remember you are not alone

    Love Al xx

  • So sorry to read about your son. What a horrible thing to have to go through especially after your own health issues. As Cheryl said it's bad enough to have to go through all that you have gone as an adult let alone watching your child go through it. Stay strong and continue to venty your thoughts here. It's a great site and is certainly helping me. I'm not sure what your own story is but I'm thinking of you and your family.

    Our  thoughts are with you and remember you are not alone

    Love Al xx

  • How devastating for you all - first you and now your baby, life can be so very cruel sometimes - my heart goes out to you all!!!

    Chemo & Radiation are bad enough for an adult, let alone a small child, I will pray and keep you all in my thoughts that all goes well from now on & that the MRI scan shows that the operation was a success so that these other treatments won't be necessary or at least not as harsh.

    Poor little guy, how do you even begin to help them understand all that is happening to them. Stay strong in yourself for yourself & your son & know that there are people here to offer you support, a shoulder to cry on, or even just a friendly ear to listen while you vent your anger & frustration in a safe environment. 

    Love & Hugs to you both, stay in touch.......

    Cheryl