BeenThere's Journey with Ependymoma

At the age of 9 my son was diagnosed w/a brain tumor. It was small and slow growing. Surgery was 2 wks after initial MRI.

Did not need whole brain but targeted the area the tumor was removed from. No noticeable side effects but he was so young at the time and very healthy otherwise.

Told surgery was first/best option for treatment

Removed entire tumor according to neuro-surgeon that did all of his surgeries prior.

Dealing w/recurrent malignant anaplastic ependymoma over 3-4 years.

My son was now in middle school.

Removed tumor yet again. No further treatment at this time.

Recurrence #7, or 8????? Starting to really impact his quality of life and mental outlook.

Ran the gammet of side effects from diarrhea, sleeplessness, depression, etc.

From age 18 - 23 he had 3 more additional surgeries for same tumor.

Time to start chemo:-(

He has now been through so much he chose to discontinue treatment of chemo and trust natural methods and diet for now.

Running out of options now. Had to travel to Chicago for surgery so new radiation method could be done while he was in surgery.

Getting really old now. We're at around 10 surgeries 'crainies'. Being sent back to same neuro-surgeon for another try.

No longer any tissue left to be able to close with - had to use a plastic surgeon to do a skin graft from his thigh to close the crani surgery.

Now the chemo is not working and he goes from one new targeted drug to the next to the next. At age 23 his body is tired and worn out. Learned a month after the last surgery he now had 7 new tumors instead of the 'normal' one each time prior. His situation is beyond control now.

After 13+ long years, many of them good and healthy, his time has run out. He is in God's hands and has only a few months left with us. At only 23 this is really hard on us his family.

He was in hospice care for only 6 days and was at his family home during that time surrounded by many friends and his family.

Parents should not lose children.

He touched so many people in his short life and is remembered by many of them on a daily basis. I miss his smile and laughing w/him the most.