PNET tumors

mum of rylee
mum of rylee Member Posts: 2
edited March 2014 in Childhood Cancers #1
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

Comments

  • dubc
    dubc Member Posts: 8
    #2
    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
    Sameh shaaban Member Posts: 11
    edited July 2018 #3
    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  

     

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