Friday, March 25, 2011

WTF!

I got some shocking and disturbing news last week.    My father's, sister's great grandson who is only 7 years old has been diagnosed with a brain tumour.  We don't have much info yet as half of Dad's siblings stayed living in England while the rest of the family migrated to Australia in the early 50's.

What is shocking,  is that this is the third child in our family to be diagnosed with pediatric cancer.  My son, as I have previously posted was diagnosed with a cancerous brain tumour called Medulloblastoma when he was 6 years old and my sisters youngest was diagnosed (two years before my son) with Acute Lymphatic Leukemia when she was 7 years old.  We are all wondering if this is all an awfully shocking coincidence or if some sinster mutation has affected our childrens DNA.

I feel really bad hoping that the child in England has a different brain tumour to Medulloblastoma.  If he has the same, how are they going to feel knowing that a child in our family suffered poorly with it and didn't survive.  What if the family want me to give support?  I don't feel I would be the best person for that because I cant give postives.  My son died.

I can only give info on what went wrong in my sons treatment and advise them on what to look out for, but really I would like for them to have a positive feeling that their child is going to live.

My hands are shaking as I write this.  I keep getting flashbacks.  The unresolved anger at certain professionals keeps coming back.  I keep planning on writing a letter to those people to let them know how they made me feel and that what they did was not right and maybe they wont make the same mistakes again.  But I never write the letter.  The anger subsides again.  I make excuses for them eg understaffed, no department head, unprecedented new cases of childhood cancer being diagnosed etc.

I haven't had any paid work this week to take me out and keep me occupied and feel really too flat to visit friends (plus they are mostly at work anyway) and I feel no motivation to do anything at home.  The house is a mess and needs my sole attention at the moment but not tonight.  Tonight I am visiting Mr Jim Beam.




 2011 is a bad year.



25 comments:

jane p said...

Kylie, I feel just awful about all the bad stuff that has happened to you. I am here for you if you need to let off any steam. Write me anytime.

flyingbeader said...

Kylie, I haven't been a follower of yours for long so I'm so sorry to hear about your son & now others in the family...how awful for you. I work in health care & one of the main things I decided while still in training & having to do a rotation in a children burn unit was that I could not deal the pain & agony of seeing children hurt & ill. So therefore, I was a chicken & I cannot imagine the suffering your have been through. My thoughts are with you. And yes, you do need to send those letters you wrote. Just think that something can be done & maybe some other child & family will be treated better.
dot

sue niven said...

I echo Kylie thoughts on this, i too am here if you need to talk, any time of day or night.

Merry said...

Kylie....thinking of you and sending big hugs at this very sad time. I am so sorry to hear about your son and what you have gone through. Please take care.

Sue said...

even though I dont know you personly It still makes me very sad at your loss,I had a little sister that had a brain tumor, It was a very long time ago, but she is still in my heart I wish you well in your sad moments, my thoughts are with you ..

Cyndi said...

Oh Kylie, my heart is aching for you. I can only imagine how difficult this must be for you... it was hard enough losing your precious son, and now a third child in the family is diagnosed with cancer. You have every right to feel the way you do...you are still hurting and grieving. Please know that you are in my thoughts and prayers, and I, too, am here anytime you want to vent. Oh, and don't get too friendly with Mr. Beam! :o)

XOXO,

Cyndi

donna said...

Oh my I am so sorry. My heart goes out to you. Just know I will be thinking of you and keeping you in my prayers.
Hugs
donna

Karen said...

I can only imagine what memories your relatives diagnosis has bought back for you. My thoughts are with you. One big bloggy hug to you.

Melissa said...

Oh, Kylie! How awful for them and for you. I am sure you have heard it a hundred times or more, but there is no "right" way to think or feel in this situation. So don't feel guilty that you are angry and don't feel that it is your responsibility to make things better for the family. It is OK to say you can't or even that you don't want to. I do think you should consider writing those letters. Even if you don't send them right away or at all. Personally, I find writing a real release. My thoughts are with you, my dear.

Khris said...

OMG Kylie I am so sorry to hear this news...and so sorry for your loss. I know how hard it is losing a child. The pain never goes away....but saying that we also appreciate each and every day we have here knowing how short and precious it is. My eldest son died in an accident at the age of 21 and my other son was 2 years old when diagnosed with a terminal illness which doctors gave us no hope of surviving...he is now 19 and here to tell the story...stay strong and never ever give up my friend...big hugs for your family.
Khris

Tim said...

Coll Stuff.

SewSofie said...

Im so sorry to hear of your loss and the diagnosis of another family member. This kind of loss is something no mum should have to endure and Im sorry it has happened to you and your family. I hear the anger and grief in your post and I wish I could help.

Donna said...

Oh dearest Kylie, of all the days for me to drop by..I'm so glad it's today. How I wish I could take this terrible situation away..and that you didn't have to go through it. I cannot imagine the pain you must feel..and the anger.

I agree that you should write the letters when you feel up to it. And honestly, I think you need to talk to this family. Your experiences could prevent the death of another child. If they are facing the same or a similar situation it would be better for them to have your background knowledge. If you can do it..I would.

I'm sure they would be grateful. Poor dear Kylie. Hugs and prayers are coming your way from me.

I just now noticed a comment you left on March 17th about improving the blog and wanted to thank you. I guess I put comment moderation on the older posts and didn't realize it..so i had several to 'approve'. Yours was precious and made my day!

How I wish I could make yours better. Do what you need to Kylie...grief is a process and we all go through it differently..but it can't really be speeded up.

Love you so much!
Donna

Fran, said...

Hi Kylie.. I am a new follower and I have something for you on my blog. Momo sent me.. I also like to sew!!!
http://justacuttnup.blogspot.com/

Cheers
fran

Soul said...

Keep it up.

Kristen said...

Oh my goodness! *hugs* I am sure they would want to hear what you know and be able to feel as though they aren't alone.

prayers,

Kris

alveen said...

Dear Kylie
What an upsetting time for you and your family. Sending big hugs and prayers your way. I encourage you to write that letter, putting your feelings down on paper can be a big help, and I think the medical profession needs to know of your concerns.
I stopped by to let you know that I am having a giveaway on my blog. If you have a moment you might like to take a look.
Wishing you a better day today than yesterday.

Gracie "Neky White" said...

I send you my best wishes . there are an epidemic of cancer in my family too.
I don't have the words to comfort you for your son, he's is heaven now and maybe you can help other people to deal with this or maybe not... that's a hard decision.

My warmest regards

Donna said...

Still praying for you Kylie...and thinking of you.

xo
Donna @ Comin' Home

Fine Hand said...

so sorry to hear this...my thoughts are with you

Kirks Korner said...

Kylie, I just saw your post. I haven't blogged in a while and am so behind. I will pray for you and your family.

Billie said...

I read your post a few weeks ago and I just didn't know what to say ... except I'm sorry and I'm thinking about you, take care and hugs to you.

GerryART said...

Like Billie I read your post but didn't have the words . . . . .
you and yours have been in my thoughts.
hugs
Gerry

Beeshebags said...

Hi Kylie, Just wondering if you're ok, you haven't posted on your blog for months now. Sorry to hear the news about your nephew/cousin (couldn't quite work out the relationship!). It's never easy no matter the age of the person being diagnosed, but even worse when it's a child I think. Hopefully you've just been super busy and will have time to start posting again soon....we miss you hun. Hugs Naomi xxx

creativedawn said...

Hi Kylie,
I hope you are doing better. You are in my prayers and in my thoughts. just reaching out to you with a cyber hug

hugzzzzzzzzzzzzzzzzzzzzzzzz
Pam