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**Kylie**

DH was diagnosed (after surgery on 27/8/07) with ACC (adrenocortical carcinoma) - very rare cancer of the adrenal gland. First surgery in 2007 removed 12-13 cm tumour. Second surgery on 7/9/2010 removed secondary tumour, plus spleen and tail of pancreas which tumour had impinged on. Third surgery on 29/2/12 - tumour found to now be inoperable as too close to aorta and too dangerous to attempt safe removal. Radiation treatments appear to be working. Secondaries on liver - main tumour and secondaries now smaller. Cancer sucks!

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more than just Mum

My 10.5 year old daughter was diagnosed with a left temporal brain tumour in May 2015 after 10 days of partial complex seizures.

Within 4 weeks she had a biopsy and they think it is a ganglioglioma, however the diagnosis can't be confirmed.

It is only a stage 1 or 2 tumour however the word benign doesn't apply to brain tumours as a stage 1 can still be terminal.

She is on watch and wait but will prob need chemo or radiation at some point. Just not yet.

It is only operable as a means of last resort as brain damage would be a likely result.

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Miss_Missy_Moo

Jaxon is 11 and was diagnosed in Febuary 2014 after one of his eyes turned in and complained of double vision.

He has Diffuse Instrinsic Pontine Glioma (DIPG)

A brain tumor located in the Pons.

He had a biopsy and 3 months of chemo but it did nothing.

He had 6 1/2 weeks of palliative Radiation in June 2015.

DIPG is in operable and incurable, Terminal on diagnoses.

We were told with Radiation we would have 3-9 months.

We are 15 months post radiation.

He has lost the use of his left side and now is needed the wheel chair almost full time, he has limited speech and will soon have trouble eating, his brain is 100% normal just it affects all his body.

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whatnamenow

unfortunatly they are pretty sure my almost 3yo DD now belongs in this post.

 

12 weeks ago during her ASD assessment the psych turned to hubby and me and said whats that lump on her neck? at that point it wasnt very big and only noticable when she turned her head a certain way. we asked the paeds a week later who said probably nothing to worry about but if it hasnt gone in 2 weeks see GP to start investigating. he later said in his report to GP he would be most concerned if it wasnt gone.

 

GP did ultrasound it was getting bigger at this point on the borderline size of concern 9x10mm and described as slightly atypical. Still no urgency...

 

Another ultrasound 4 weeks later and its grown again around 15mm now.... GP referred to LCCH in brisbane. Saw them this tuesday. initially from the referral ultrasound they werent to concerned. agreeing a FNA sometime in a few weeks. they then decided to do an ultrasound at that hospital because she"s stopped eating, is sleeping more and loosing weight.

 

Aparently it was aweful what they saw. She's having a full node removal on tuesday and bloods under GA to confirm a lymphoma, and then if they are right our journey begins.

 

i'm a bit of a mess, we live hours away from the hospital so this will turn our lives upside down. :(

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2004member

PP I just stumbled across this thread in the new threads list. I live in Brisbane and if you end up having to come down this way a lot I would be happy to help in any way I can. Please make sure you hit me up.

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whatnamenow

thanks 2004member. they flew us home yesterday to get sorted and flying back into brisbane monday. she's on tuesday mornings list. go from there i guess.

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