PNET tumors

mum of rylee

Hi,
my daughter who will turn 2 on 5th June was diagnosed woth a PNET medulloblastoma tumor in her right frontal lobe on Jan 27th..man what a knockout punch that was...
i have 3 older children from 13 - 8 all healthy, how could this happen and man oh man she is the smartest child and am constantly been told that now, so how could she have a brain tumor???
first option was to surgically remove which they could only remove 15% because of is malignancy and where it was placed,,
we have had 2 cycles (1 month each) and at the half way point, mris look great so another 2 months of chemo then ate jue we will operate.
Just wonderig if there is anyone else have or going thru this..please reply or email nicole.rivett@three.com.au

dubc

Medulloblastoma Survivor

Hi Mum of Rylee,

 

I know you posted this back in May ( I havn't been on the network in a while).  I am a 40 year survivor of a Medulloblastoma.  I was diagnosed at the age of 2 and a half in 1973.  Although I was too young to remember what I went through, I certainly remember the years afterward including the CAT scans and eventually Growth Hormone treatments.  If there is anything I can help with please ask.  I hope everything is ok and Rylee is doing well. 

Sameh shaaban

dubc said:

Medulloblastoma Survivor

Hi Mum of Rylee,

 

I know you posted this back in May ( I havn't been on the network in a while).  I am a 40 year survivor of a Medulloblastoma.  I was diagnosed at the age of 2 and a half in 1973.  Although I was too young to remember what I went through, I certainly remember the years afterward including the CAT scans and eventually Growth Hormone treatments.  If there is anything I can help with please ask.  I hope everything is ok and Rylee is doing well. 

Hi dubc

Can u plz share your tratment protcol