- R
- C
Amazing how your day changes.
9:15 am Paxton was sent to the ER by Dr L
10:13 am I was leaving work
11:10 CT scan
11:35 am we were finding out it’s a brain tumor
1:26 pm they are taking him back for the first surgery
MRI results are in. It is officially an Ependymoma and cancerous. It has the fluid channels from the mass that’s a common indicator. Some good news ... it hasn’t spread into the spine. Not so great news ...It does surround the brain stem and it surrounds the cranial nerves and is pressing on the brain stem. There is no way to safely remove it all. Even removing it now there is a lot of risk. Radiation with the possibility of chemotherapy is in his future. Monday will be when they can actually grade the tumor and pathology will send samples to Mayo Clinic. After Monday’s surgery it will be more of a waiting game as we wait for genetic markers and other testing to come back at a snails pace.
For a while pediatric ICU is home away from home.
What is ependymoma?
An ependymoma is a rare type of primary brain or spinal cord tumors. Ependymomas are found throughout the central nervous system in the supratentorial (top of the head), posterior fossa (back of the head) and spinal compartments.
These tumors affect both children and adults. They are thought to develop from certain cells that normally mature into ependymal cells. Ependymal cells line the ventricles (fluid-filled spaces in the brain) and the central canal of the spinal cord. Sometimes, ependymoma tumor cells can spread in the fluid that surrounds the brain and spinal cord.
How common is ependymoma?
In the United States, 200 new cases of ependymoma are found in children and adults each year.
Ependymoma occurs more often in children than in adults.
Ependymoma is the third most common type of brain tumors in children.
Most ependymomas are found in young infants and children.
The overall five-year survival rate for those with ependymoma is about 82 percent.
For children up to 19 years of age, the five-year survival rate is about 72 percent.
#Ependymoma
9:15 am Paxton was sent to the ER by Dr L
10:13 am I was leaving work
11:10 CT scan
11:35 am we were finding out it’s a brain tumor
1:26 pm they are taking him back for the first surgery
MRI results are in. It is officially an Ependymoma and cancerous. It has the fluid channels from the mass that’s a common indicator. Some good news ... it hasn’t spread into the spine. Not so great news ...It does surround the brain stem and it surrounds the cranial nerves and is pressing on the brain stem. There is no way to safely remove it all. Even removing it now there is a lot of risk. Radiation with the possibility of chemotherapy is in his future. Monday will be when they can actually grade the tumor and pathology will send samples to Mayo Clinic. After Monday’s surgery it will be more of a waiting game as we wait for genetic markers and other testing to come back at a snails pace.
For a while pediatric ICU is home away from home.
What is ependymoma?
An ependymoma is a rare type of primary brain or spinal cord tumors. Ependymomas are found throughout the central nervous system in the supratentorial (top of the head), posterior fossa (back of the head) and spinal compartments.
These tumors affect both children and adults. They are thought to develop from certain cells that normally mature into ependymal cells. Ependymal cells line the ventricles (fluid-filled spaces in the brain) and the central canal of the spinal cord. Sometimes, ependymoma tumor cells can spread in the fluid that surrounds the brain and spinal cord.
How common is ependymoma?
In the United States, 200 new cases of ependymoma are found in children and adults each year.
Ependymoma occurs more often in children than in adults.
Ependymoma is the third most common type of brain tumors in children.
Most ependymomas are found in young infants and children.
The overall five-year survival rate for those with ependymoma is about 82 percent.
For children up to 19 years of age, the five-year survival rate is about 72 percent.
#Ependymoma
Organizer and beneficiary
Amanda Idell
Beneficiary