I am Kristina, mother to a beautiful 5 year old little boy. He has had my heart since day one, we have been inseparable. I have taken Ayden to work with me every day since he was born, this has given him an amazing personality, he loves people! I even go to school with him a few days a week. Now we are inseparable for another reason.
I am here because my son Ayden has Ependymoma and Sub Ependymoma. Our story began in April of last year. Ayden complained of severe neck pain and was on the floor in tears. The first time it happened, we thought that was weird. It continued to happen over several months with many trips to our local emergency room and visits with our family doctor. Ayden's pain seemed to happen after running, playing, being tired, when he cried it hurt more, and other situations like this. The doctors didn't understand why these times would make the pain come on, he would also get headaches during these episodes. Now, it makes complete sense why these situations had my baby in tears. We were sent home every time with medicine and told they were muscle spasms or he slept on it wrong. We knew something else was wrong but could not get a better explanation.
At one visit, they did do an X-Ray, which showed "nothing". At the last ER visit, they finally did a cat scan. We were told they found nothing and sent home with the same muscle spasms story, we were relieved that they had not found anything but knew something was seriously wrong. Our family doctor, who I had asked a few months before for an MRI and was turned down, was on vacation when we were supposed to do a follow up appointment with him from the ER visit.
We went to see another doctor, a doctor that found all of this a little too unsettling and he decided to dig a little deeper for us the following day. At this point, Ayden had thrown up that week and was too tired to even get up. His head hurt when he sat up or stood up, so he chose to lay down most of the time. This doctor told us to drive to the ER in Ann Arbor, to C.S. Mott Children's Hospital and that they would do an MRI for us there. We didn't even get the chance. We got the phone call the next day telling us to come to the hospital in Lansing to be admitted immediately. They told us that the doctor took a second look at the cat scan they had done 2 days before and the area that they thought was normal, was in fact, a very large tumor.
This was the worst experience of my entire life! I'm sure every parent would agree. We were told by the doctor that looked over the MRI, that he did not feel that he could safely remove the tumor but he trusted that Dr. Garton could. Ayden was helicoptered over to Mott Children's Hospital and surgery #1 took place a few days later, just a few days before Christmas.
Surgery went great, there were a few things that were different, but expected. Ayden had a hard time swallowing and we learned that he would have to have a feeding tube in his nose. He decided that since we had already chose to do the Mickey Button for chemo, we were not leaving the hospital without having it placed. So Ayden had another surgery before new Years to place the Mickey Button and the Chemo Port.
We did 2 rounds of chemo and then did Surgery #2 in late March of this year. Same thing with the last surgery, Ayden is having a hard time swallowing. We have the G-tube so it makes things a little easier. Other than the fact that now we are worried about his vocal cords. Both surgeries have taken place on the left side of his brain and the right side has since been compensating. Now we are fast approaching surgery #3 at the end of April this year and they are planning to go in on the right side of his brain.
Ayden has some nerve damage to his face on the left side and all of the movement in his left side of the vocal cords are gone. His balance is good. He does put his head down since the 1st surgery, placing his chin on his chest most of the time. He gets better over time but it seems to be worse when he is tired.
We will do surgery #3 this month, then will proceed with Radiation and do a follow up of 2-4 rounds of chemo. We are told they will never be able to fully get the tumor out because of it's size, location and it simply does not want to come out. We have chosen to go with taking out what is "safely possible". We will radiate the rest, which will hopefully not be much.
I have been nervous about talking to other parents about this, but I'm getting to the point that I am feeling more comfortable and need the support of others going through similar things in their lives. Read More...
My son has 2 surgeries now to remove a very large tumor (Ependymoma) and has a third surgery, and hopefully last, at the end of the month. His voice changed after the first surgery and he had some difficulty swallowing. After the second surgery, he seemed to talk a little better, but still has a hard time swallowing. We went to a vocal test today and were told that he has no movement in the vocal cords on the left side, which is where both surgeries have taken place. He has decreased movement on the right side. I am a nervous about what this means if the other side is damaged with the next surgery at the end of the month since they will be going in on the left side this time.
The last post about this topic were 2 years ago and there were some "new things" coming out. Are any of you parents experiencing this with your child? And have they talked to you about options for long term to cure or try to fix the issue?
I am new to all of this since we just found out in December and have been non stop treatments and surgery since. Any help would be greatly appreciated. Thank you. Read More...
Have not been on this site in over a year wow! David looked like such a little babe in his picture. He is now a big boy :0) ( due to GH shots) he will be scanning this thursday will post, God willingly, good results.
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...