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Post by margie04 on Oct 30, 2013 15:42:52 GMT -6
Hello my name is Margie and I am a mother of three beautiful girls ages 21,18,and 12. On June 17th 2013 I took my 18 year to the hospital for the 3rd time in the last 2 weeks due to having pains in her ankles and this time having difficulty walking. After running a few tests on her we were told at 7 pm that my daughter Kayla had a large intradural meningioma tumor wrapped around her spinal cord and she needed surgery her tumor was in C6,C7 and T1 laminectomies . Three days later my daughter got operated and the surgery last 7 hours. That was the most horrifying and sad moment I had ever been through. Its been 4 months and my daughter is in rehab learning to walk and is about to get radiation due to the doctors not being able to get all the tumor out. I have no idea how long or where did this tumor came from because we don't know anyone in either family that has that, and there were no signs of anything besides ankles hurting for about 2 weeks. My beautiful Kayla was not able to attend graduation due to her being admitted to the hospital. Today we are still dealing and learning more about this tumor since now we are to face radiation of course we are scared my daughter has been very depressed since all this started. I wanted to know how many people are going through this because I feel helpless seeing my daughter this way and not being able to help her or take all this away, as a parent it is the worst feeling and worst pain ever experienced in life. Thank you to those who took the time and interest to read my story.
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Post by Leofwen on Nov 16, 2013 15:40:14 GMT -6
Hi Margie04
How is Kayla doing now? Hopefully she will be on the road to recovery. As a mother you must be so worried. Keep posting on the forum.
S x
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Post by Leofwen on Nov 17, 2013 13:21:37 GMT -6
Hey Leofwen Kayla is doing well thank u for asking she will be getting radiation treatments 5x a week, hopefully the tumor will disappear or at least shrink to the point that she will be able to at least get around by this I mean walking. How are you doing is pain management working for you. God I wish you all the luck in the world stay in touch keep posting God bless you
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Post by leks on Nov 17, 2013 13:50:34 GMT -6
I've been battling with this tumor for nearly 2 years now, most recently finished radiotherapy at the beginning of august, I'm still dealing with a lot of issues that could have been caused from the radiotherapy.
you mention depression, please get on top of that asap, radiotherapy is a battle on its own, throw in fatigue to the mix and things get tough. get Kayla to doc and maybe he can prescribe some anti depressant.
sending positive thoughts and prayers to your Kayla.
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Post by Leofwen on Nov 18, 2013 1:47:32 GMT -6
I'm glad Kayla is doing better and on her recovery journey! but still some left to go. I agree with Leks about getting on top of the depression as it can spiral if left unchecked.
I am doing ok at the moment as I have stopped working and now have time to manage my condition and rest when I need to rather than pushing myself all of the time. I still get exhausted and spend a day in bed once a week when I've overdone it!
The pain management doc has altered my meds and I have come off morphine, which is great and I feel better for it. I am still at the beginning of my pain management and will keep posting progress.
In the meantime, stay positive and hugs coming over the airwaves for both you ( as you need them too) and Kayla.
S x
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Post by Margie on Nov 18, 2013 20:05:06 GMT -6
Thank u guys I am so trying to get Kayla to get on something for her depression but its a battle because now she is taking Kepra an anti seizure meds and it made her hair fall out so things just got worse. I'm just worried and tomorrow is our first treatment of radiation so we are definitely scared. Leks I'm so happy you are done with your therapy and hope and pray that everything turns out fine and it will prayers do work believe that love. As for Leofwen I also pray that things will work out for you, you are in my prayers and I know God is listening to us faith moves mountains my friend and I have lots of faith that things will be ok. Please keep in touch both keep me posted and good luck with everything. I will post tomorrow once we get back from getting radiation. lots of hugs and prayers your way God bless
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Post by margie04 on Nov 18, 2013 20:14:06 GMT -6
Hey Leofwen Kayla is doing well thank u for asking she will be getting radiation treatments 5x a week, hopefully the tumor will disappear or at least shrink to the point that she will be able to at least get around by this I mean walking. How are you doing is pain management working for you. God I wish you all the luck in the world stay in touch keep posting God bless you
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Post by margie04 on Nov 18, 2013 20:15:10 GMT -6
Thank u guys I am so trying to get Kayla to get on something for her depression but its a battle because now she is taking Kepra an anti seizure meds and it made her hair fall out so things just got worse. I'm just worried and tomorrow is our first treatment of radiation so we are definitely scared. Leks I'm so happy you are done with your therapy and hope and pray that everything turns out fine and it will prayers do work believe that love. As for Leofwen I also pray that things will work out for you, you are in my prayers and I know God is listening to us faith moves mountains my friend and I have lots of faith that things will be ok. Please keep in touch both keep me posted and good luck with everything. I will post tomorrow once we get back from getting radiation. lots of hugs and prayers your way God bless
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Post by lw on Nov 20, 2013 8:57:37 GMT -6
Hi Margie,
No, you are certainly not alone in this journey. I don't have kids but I was diagnosed with a spinal cord tumour when I was in my 20's. I can imagine that your daughter is going through the wringer both emotionally and physically. I think the best piece of advice I would give to her is to keep looking forward and thinking of the future. How she is now is unlikely to be permanent. This time next year she could well be back to old self (or almost). Recovery following SCT surgery can literally take several years. I was quoted two but carried on improving after year 3. I went into surgery unable to walk and continued to be that way for several months after. It was a year before I could leave my home confidently and go out. In fact, I temporarily came out a lot worse than I was when I went in. In the early days I sometimes regretted even having the operation in the first place. It must be even harder for Kayla as she began her SCT journey healthy and able-bodied. Depression is normal given everything she has endured, but I would also advise that she gets help early if at all possible. Please tell her that 4 months is nothing and she can't give up yet. It probably feels like she's waited a lifetime already but there is still hope, she just can't see it now.
Leah x
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Post by margie 04 on Nov 20, 2013 15:04:59 GMT -6
Hey Leah thank u for that good advice that I will certainly pass to Kayla, yesterday was supposed to be her first radiation treatment and we are ready to go, when the nurse calls me to say that the machine broke so we reschedule for today. After waiting for almost 2 hours they tell us they cannot do the treatment because they have no room for mistakes and they have to be sure that they can get the tumor that is left without hurting her spine. Thats crazy I said did u guys not think this throughly because they know exactly where the tumor is. So again we are going to try tomorrrow its so stressful, and Kayla is just sad, upset feeling a little bit of every emotion possible. Thanks Leah for the small talk it means the world to us because there are actual people that listen to us and relate as well. Which is everyone in this forum. Thanks love for your kind words. God bless will keep you posted.
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