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Diffused Gliomatosis Cerebri

sharmila
sharmila CSN Member Posts: 1
in Childhood Cancers #1

Hi

I am the mother of a 9 year old you has been diagnosed with a diffused Gliomatosis Cerebri. The first symptoms she has was seizures which was in August 2014 after that in December 2015 she had a mri and CT Scan and then a biopsy which confirmed this. Since then she has had 6 weeks on Radiotherapy. She was to have Chemotherapy for one year. However we decided not to do it..As it kills more good cells then bad. Currently she is not in school and is on steroid and morphine and Epilim an Keppra. We all so are giving her the Cannabis oil which is helping a lot with the pain side but it makes her very hyper and aggressive at times. We are all so giving her kale and Asparagus juice and carrot, apple and beetroot juice every day.

We are trying to help her with the diet but she is loving sweets and chocolates and because she doesn’t go to school she has put on a lot of weight due to lack of movement.

I don’t know what to expect....We were told in December 2014 we have 6 months with her...

Does anyone have kids with the same? Would be nice to talk and get advice??

 

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Comments

  • IAmYusufSidi
    IAmYusufSidi CSN Member Posts: 12
    #2
    Keep It Up

    Hello, I went through your post and let me tell you, i am not the parent, but i have my blessing for your child.

    You are doing very good for her and i confirmed that it is the best that any child could have from his or her parents.

    When the weight part is concerned, it is not necessary to go school for physical activities. You can spend more time with your child play along with him or her. Share hobbies, know him or her better, ask what she or he wants to do in life, and fulfill as much as you can, and if there is something you cannot able to do, don't feel failed, encurage others to do that. and have the best time of life with your childern.

     

    I hope and pray for your children's health. Have a great day :)

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  • Arithewarrior
    Arithewarrior CSN Member Posts: 1
    edited April 2017 #3
    Hi, my child is also fighting

    Hi, my child is also fighting this battle and I'm looking for other parents trying cannabis. I pray your child is doing well.

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