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Post by sophie on Aug 6, 2010 8:54:48 GMT -6
My atheletic 12 year old daughter complained of back pain in March 2010 we thought a sports injury .Xray showed scoliosis 10 % so we went to chiropracter .When that didnt help we got MRI it showed SCT at T2 to L10 10 cm .She had syrgery at Toronto sick kids July 21 and thet only able to biopsy it as removal would have left her a parapeligic. It showed to be an astrocytoma with gemistocytes which they have never seen before! They will start chemo soon Vinblastine once a week for a year to keep from growing .She has no deficits just numb left foot.We are very scared for what her future holds. We are very devastated. Any advice would be greatly appreciated.
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Post by capttammy on Aug 6, 2010 9:58:41 GMT -6
Im so sorry to hear of your terrible news. I would suggest finding another doctor who is more experienced with SCT. My husband had his surgery at johns hopkins, if no one else has recommendations in your area i would def make the trip asap. Dr Jallo is a pediatric neurosurgeon and specializes in sct. Best of luck to you and your daughter.
Tammy
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Post by jamie masonovich on Sept 26, 2010 7:38:06 GMT -6
Thanks for your reply. I did email Dr. Jallo with my daughters report and MRI he was so great to give us his opinion .We are on the right track for now. She has been taking Vinblastine once a week and so far no side effects. She will recieve this for 70 weeks. We hope it shrinks it because she has pain and takes tylenol every 4 hours.She was once so active and has had to give up her sports .It is really hard to cope somedays.
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Post by sophiem on Nov 27, 2010 8:23:50 GMT -6
My daughter has developed a hunch back since surgery. Kephosis? just had xrays taken and waiting to hear from surgeon. Anyone experience this ? Is it treatable?She was once so active and now she has so much pain and now this deformity.  |
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Post by betty on Nov 27, 2010 11:47:25 GMT -6
Dear Sophie's Mom,
My heart goes out to you. I know it is so difficult when our children are touched by illness.
I don't have experience in what your daughter has gone through.
I know for me when I have no answers and in myself I seem empty, I run to my Rock, Jesus and I
lay all my burdens at his feet. I cry out and plead with him. He is a source of strength and comfort for us. You can pray for your sweet little girl as I'm sure you have. We have to trust we will get through these things.
I pray that your current treatment works and that Sophie will be pain and tumor free.
Keep us posted and it's a safe place to express our frustrations and fears. I can relate with the "somedays it is hard to cope". I have an adult child with a disability.
You also need to think of staying healthy yourself so perhaps you can find some little thing that makes you happy and take a little break sometimes. At the moment I escaped to Starbucks, just to clear my head.
God bless you............
Betty
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Post by betty on Nov 27, 2010 11:48:09 GMT -6
I'm sorry I thought Sophie was your daughters name  |
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Post by sophiem on Dec 1, 2010 18:29:41 GMT -6
Thanks for your kind words Betty.We are trying to stay positive most of the time but we do have bad days for sure. You have been thru alot with not only yourself but your daughter as well!Thats alot to go thru.Good for you for handling it all.
I like to research everything but sometimes thats not so good.Thats how I found this website but I don't know if it helps or not.It seems that everyone here has been thru alot and really not alot of positive stories.I hope my daughter doesn't have a lifetime of pain to go thru.
We did hear back from the neurologist and the xrays showed that the bones in her back have moved so he is referring us to orthopedic surgeon.I hope and pray she doesnt need surgery again!What else does she have to go thru!
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Post by kimsmom on Jan 9, 2011 21:44:04 GMT -6
Hi Sophie,
I hope since your last post your daughter's pain has improved. My name is Denise and I have a six year old daughter with a spinal cord tumor. To make a very long story short, she was diagnosed at 2. Our neurosurgeon attempted a resection and also only removed enough for a biopsy and did a duraplasty to allow for expansion of the tumor. Our daughter then also had 70 weeks of chemotherapy (carboplatin, vincristine, and temodar). During chemo we attended the SCTA's conference and met Dr. Jallo. We've been sending him our daughter's scans ever since and he is great. Our daughter's tumor was from T8 to L3 with a large cyst above the tumor as well. The chemo shrunk the tumor about 40 to 50% according to Dr. Jallo. Since ending treatment the tumor has remained stable with no further symptoms. Our daughter has been monitored with MRIs every six months and now we are about to move that to 8 months.
I guess what I've learned most is that each and every case is different. Get the best advice you can (certainly continue to talk with Dr. Jallo) and look to your heart to show you the way. If you ever need to talk or have questions feel free to email me directly. I'm sorry I didn't see your post sooner. I have to admit, with day to day life I don't check the boards as often as I'd like to.
Take care,
Denise
denisethul@yahoo.com
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Post by sohiem on Jan 13, 2011 17:25:55 GMT -6
Hi Denise
Thank you for your reply! I am so glad your daughter is doing well!!It makes me feel good to hear about another child that treatment has worked!!That is so encouraging I know everyones case is different but your news gives me hope .There is no other child with SCT currently at our clinic so we feel a little alone .Noone to compare stuff with.
My daughters pain is better now that she takes gabopentin and naproxen .Just her hunch back really hurts me to see hopefully we will see orthopedic surgeon soon. She had MRI last week and her tumor is stable.She gets # 18 chemo tomorrow but who's counting!
Thanks Denise !
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Post by kimsmom on Feb 7, 2011 0:56:12 GMT -6
Sophie,
I'm glad the post helped you. There wasn't another SCT child being treated when my daughter was going through treatement either. We've yet to meet another child face to face with a SCT so I understand when you say you feel a bit lonely. I can tell you that the nurses and staff at our chemo center became like a second family to us and were wonderful. I did meet a couple of parents that I could talk to and while their children suffered from various other medical issues, we all were worried about our kids so we always found common ground to talk about.
While Kim (my daughter) has been done with treatment for some time, if you ever want to compare notes or talk, just send a message.
How's your daughter doing? My thoughts and prayers and with you and your daughter. I hope the treatments are going well and that she's tolerating them well.
Remember to try to take care of yourself as well as your daughter.
Take care,
Denise
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