My son is diagnosed an anaplastic ependymoma grade 3 by the truncus cerebri.
That was in 2006. My son was 6 years old.
The doctors didn't believe he was ill. But after a long time he get a mri and the saw a tumor.
He was operated on and almost the entire tumor was removed
He received 33 radiotherapy.
In 2013 he had again an ependymoma grade 3, but now it was diagnosed in the medulla spinalis.
He had 2 tumors.
He was operated on again. Now the two tumors were removed.
He received radiation therapy again. His hole back and head.
Now 30 times. Read More...
HI I am sandhyafrom India. My daughter is also diagonised an ependymoma grade3 and now she is going to complete her 28 days iGRT-IMRT radiation treatment ( after complete GTR) that wouldon 8th jan.I want know the side effects
Welcome to the group although I am very sorry you have to be here. Your story is so close to my son's story. Ryan was almost 3 when diagnosed but his story exactly like your daughters as far as how she was diagnosed. We are both very lucky that our pediatricians listened to us because many families were misdiagnosed for months before someone actually listened to them. We did proton radiation in Boston and finished 4 years ago this week. Ryan is still NED or no evidence of disease. These last 4 years have had there tough moments but I wouldn't trade them for anything. Ryan has hearing loss, and is growth hormone deficient but these are really small things compared to having him here with us the last 4 years. He is doing really well in 2nd grade...loves to run, jump, torture his little sister, go to scouts, play soccer and make the best of each day. It is a hard road but this is the absolute best place to gain information and get support. I don't think I would have made it through the first few months without this group of families. I know Ryan is a little older then your daughter but there are several other families who have done proton at your daughters age and their children are doing well. I know that this is such a difficult time for you and my thoughts and prayers are with you...try your best to enjoy your baby girl....I will always remember a quote my dad sent me after Ryan was done "you can't change the past but you can ruin the present, by worrying about the future" If you would like to read Ryan's story you can find it at www.caringbridge.org/visit/ryanjacksonroars
Enjoy your Christmas and may your New Year hold many blessings!
Jen m/o Ryan, GTR, proton radiation, currently NED Read More...
Hi, to all! I am Marnie from Houston, Texas. I have been researching on anaplastic ependymoma when I came across this site...
My daughter, Crissy, is recently diagnosed with anaplastic ependymoma (at 16 months old). It all started when hubby and I got concerned about her unsteadiness in walking, especially when she started crawling from point a to point b and would only walk unless she was holding on to our hand. I brought her to her pediatrician who then arranged for an MRI the following day. I remember the pediatrician telling me, "Let's rule out the worst variables first." While my daughter was still in the recovery room after the MRI, the pediatrician called to inform me that they found a mass in my daughter's brain and that arrangements are being made to transport us to the Medical Center (we were then at the west campus of Texas Children's Hospital) to talk to the neurosurgeon as to what course of action they're going to take. They operated on my daughter the next day. The neurosurgeon informed us that he was able to perform a gross total resection and based on the frozen sample, the tumor could possibly be anaplastic ependymoma. This was confirmed by the pathology report that came out a week later. The oncologists discussed with us the pathology report and the standard of care, which is proton therapy.
By December 30th, Crissy will undergo 30 sessions of proton beam radiation therapy at MD Anderson's Proton Therapy Center. I have been frantically doing research and praying hard that my husband and I are doing the right thing with regard to agreeing to irradiating my daughter considering her age...
A Merry Christmas in advance to all of you! And thank you for allowing me to share what my family is going through. Read More...
My name is Sue. Our daughter Julia has a similar story. She was diagnosed when she was 3 with a grade 3 anaplastic ependymoma in her left occipital lobe. She had 33 IMRT treatments at Johns Hopkins after a gross total resection. She is now 11 and doing great. She has peripheral vision loss from the surgery and permanent hair loss from the radiation but has suffered no major learning issues from to the radiation. I hope this gives you some hope. It is a long road but you can get through it. Please email directly if I can help you in any other way. (
I am sushma from India mother of two little daughters. My elder one is 6 years old and she was having unprovoked projectile vomiting in the early mornings for quite some time. the pediatrician failed to recognize the symptoms and was medicating her for all the wrong reasons. however in Dec 2012 we approached a new doctor who then suggested us to see a neurologist for a second opinion.
we took her on 17th dec night of 2012 and on 18th she was operated. the neuropathology came in 4 days later reveling that it was anaplastic ependymoma grade 3 in her left occipital lobe.
later on she was given 33 fractions of Radiation at HCG centre in India, it was a IMRT radiation. the medical oncologist said that chemo is not required at this stage and we have been advised constant monitoring for the next two years. this is my story in short. I would love to connect to families of my kind. Read More...