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Post by gordy1 on Nov 6, 2013 2:26:15 GMT -6
Hi Lisa and Tiffany,
I have a 10 year old son, diagnosed 6 years ago with a Pilomyxoid Astrocytoma (later changed to Pilocytic), Grade 2. You will see from my signature some of the other details. We're based in Perth, Western Australia, so about as close as anyone you will find in a similar situation Lisa!
Thankfully we haven't had to deal with chemo, but have dealt with a few other challenges (paraplegia being the obvious one, radiotherapy being the other). Know the effects of weight gain with steroids (you have to hope the steroids do some good, because that weight gain is a shocking side effect...).
As you've both said, kids cope very well - my son included. As I've said before, kids live for today, parents adults worry about the future....
Happy to chat.
Cheers, Gordon
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Post by Margie on Nov 7, 2013 20:09:49 GMT -6
Hello Tiffany my name is Margie and my daughter kayla who is 18 years old was diagnosed in June 17th 2013 with a spinal cord tumor wrapped around her spinal cord. It was devasting and still is Kayla had surgery 2 days later and is now going to go through radiation due to the fact the doctors were not able to get all the tumor out and last week when we went to the oncologists he told us her tumor was growing. I know Kayla is not a young child like the one you have but as a mother I definitly understand your pain. since June 17th 2013 Kayla has not been home and we are just waiting for a date to start her radiation. So with that being said Tiffany my prayers are with you and your family and please keep in touch and let us know how's your son doing, my email address is kimalkay@yahoo.com God bless Margie,
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hope
Junior Member
Posts: 14
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Post by hope on Mar 15, 2014 0:54:44 GMT -6
Im glad I find this post. I felt so alone with a 4 months old with sct. Everyone at hospital just tells me it's so rare, they have never seen it nor know what to do with it. She had surgery when she was one month old, unfortunately the recent post op MRI show none of the huge tumor was removed. Devastated
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Post by rachsoph89 on Apr 7, 2016 16:00:06 GMT -6
Hi I'm new to this. My 4 year old daughter was recently diagnosed with an Intramedullary ependymoma. The neurosurgeon was able to remove all of the tumor. I am still not sure of some things. Like is it benign or cancerous I've read different things. She has an MRI next week and is getting a lumbar puncture as well. Wasn't sure why the dr. Wanted to do the spinal puncture ? Anyone Know
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Post by mateo on Apr 7, 2016 16:44:54 GMT -6
Good day,
I had an intermedullary ependymoma removed and received the biopsy results about 5 days post op. Mine was Grade 2 which is a low grade non cancerous tumor. Unfortunately, I havent heard of the term spinal puncture as it pertained to my surgery. I would question the NS why. I hope your daughter is recovering well from the surgery I have a 4 year daughter as well. Best, Mateo
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Post by rachsoph89 on Apr 7, 2016 17:40:50 GMT -6
Thank you for responding. I will have to add that to my list of questions!
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Post by rachsoph89 on Apr 7, 2016 17:41:25 GMT -6
Thank you. Glad you are doing well!
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