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.

In Memory

Anthony 

15.12.1994 - 2.7.2003

Remembering the fun times with such sweet sorrow.

Miss you Antmee

Anthony

Another reason I have stayed away from the internet is a bit depressing for me.  The 15th December was my son Anthony's 15th birthday, and he isn't with us anymore to share in the celebration.

At this time of the year the junk mail and shops are full of toys I know he would have loved but I can't buy presents for him anymore. Its been six and a half long years without him.

 I was going to do a memorial post on the 15th for him but it was a emotional day for this family.  His sister and I fought and his brother has a anguished breakdown like I haven't seen since Anthony died.  So no posting was attempted on that day, but today I feel sad for not doing it as if I let him down (sounds embarrassingly silly to me).

So today I will say something about my dearly missed son.

He was a extremely smart little boy.  I know a lot of parents are bias but I don't think myself brilliantly smart and though I thought my children did ok at school I didn't think Anthony was very smart.  This is mainly because  I couldn't teach him to read.  My other two picked it up before they started school but not Anthony.  The teachers at school couldn't teach him to read either.  I would sit him on my lap with word cards and it was frustrating.  I though he was maybe dyslexic or had some kind of learning disorder.  BUT  the school thought otherwise.  They assessed him with high IQ but his behaviour was out of control.  They diagnosed him as possible Asperger Syndrome and sent us off to Autism Association for confirmation.  I cried and was stressed out that my son was possibly autistic and would have challenges ahead of him.  BUT the Autism Association tested him and the final conclusion was no he did not have Asperger's.

A month after we were told he did not have Asperger's he came home from access weekend with a headache.  A week later he was diagnosed with Medulloblastoma.   I wish he had Asperger's Syndrome instead.  Two years of chemo and radiation.  We almost lived in the hospital.  We would get a week home every now and then.   Five months of daily radiation therapy.  Not all at once but 9 weeks then six weeks then 5 weeks.

A couple of days after brain surgery my dh and I return from lunch to Anthonys hospital room to find him sitting up in bed FLUENTLY READING a Kzone magazine.  He gave me a guilty look and then shrugged his shoulders as if to say:

"Oh well, mum can know I can read now and was just pretending I couldn't, to get some extra quality time together with just her and me, but now I don't need to because she is stuck in this hospital with me. And I am bored sitting here with nothing to do".

He missed a hell of a lot of school.  He might make an hour a day of school after radiation therapy.  You would think he would be behind in class but no!  His teacher spoke to me one day how he was extremely smart and amazed her that he could slip straight back into class work  with so much time off.  Also that she wanted to put him into the top maths group but he would then be the only boy in the group and she wanted him to be happy with his friends.  I said that some of the other boys might catch up and go with him into the other group but she said Anthony blitzed them in Maths. So he was smart, cunning and wise.  (wiser than me I found out later)

The picture above is not a very good scan of an old pic but I like it.  It is one of only a few pictures I have of Anthony before he got sick.  Anthony is the tall one wearing blue army clothes.  His older brother Brandon looks shorter but I think they were the same height.  People would confuse them for twins even though Brandon was nearly two years older.

Again the pic above is not very good but I could not delete it.  They were taken on automatic timer and afterwards Anthony asked to view them.  I gave him the digital camera and he gasped out to me:

"Mum!  The next time you tell someone that I am an Angel and they don't believe you, you now have proof!  See!"

He then showed me the picture and the halo above his head.  This was taken only a week or so before he died and in two years of taking photos of him in hospital we have never got one with a halo over his head before.  It made me cry because I knew he was dying and was scared that my troubled belief with religion and God and not having my children christened would prevent Anthony from getting into heaven.  This picture was like a message for me to not worry, God loves all.  I might not get in but innocent little children will.

My son liked all things Army as you can see from the pics.  In most of them he wears army clothes and most of his favourite clothes I made for him.  Like the blue outfit in one of the pictures above.

Goodnight baby!  Mummy misses you