This website has been created for the sole purpose of CHILDHOOD Pineoblastoma, a PNET maligant brain tumor that arises in the pineal region There is minimal information provided and it is largely misunderstood. Therefore, the purpose of this site is dedicated to providing information to families of children that are diagnosed with this extremely rare disease. It accounts for roughly .05 – 2% of all CNS / brain tumors for children under the age of 5. These numbers will vary pending on the source you choose to research. My hope is to compile all the information I have obtained through my son’s journey and also post anything that is possibly new findings for this devastating disease. My hope is to form a place where families can compare issues, experiences, etc, so they do not feel so “rare” also.
Ellie Marie is featured as one of the Pineo Kids. To see Ellie Marie, click here.