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Children survivors of Medullablastoma brain cancer

cobbs
Posts: 4
Joined: Jan 2018

Hello - I'm looking for feedback regarding children that survived brain cancer with radiation and chemo.  Any noted side effects 2 years later and how the child is doing in school.  i now have a  grandaughter in my care since September and it seems to me that she is unable to focus at school or at home and unable to memorize her math tables, etc.   At home she searches for simple words for a conversation and cannot follow basic instructions too well. When she started 4th grade I told the school that she needed to be thoroughly assessed as i saw several issues such as extreme short term memory.  I can see the school is not going to do anything and the teacher feels like she can do better and the cancer treatment is an excuse.  I dont know and would love to hear from other parents. She just received her report card and it is very bad

stepdenco
Posts: 1
Joined: Oct 2017

Hello cobbs, read your post and I possibly could provide some feed back about this issue.  I am a 50 year survivor of a medulloblastom malignant brain tumor. I had my tumor when I was 7 yrs old and in the 2nd grade. 10 years later, I gaduated within the top percent of my class.  While I was out of school for the surgery and recovery period, I used materials that were provided by the scholol to keep up with schoolwork, so when I returned for the 3rd grade, I did not feel like I had missed anything.  I didn't notice any difficulty in the learning process when I retutned and grades were always about average.  In Jr high and high school is where I performed my best schoolwork and focused more on having a career one day. My surgery was in 1969 and after graduating from a vocational school, I went to work at a Medical Center as a certified medical technologist in 1982.  I have held this career field for 36 years.  I pray and hope that your grand daughter will improve in the coming time, might take a while.  But I just wanted you to know, a child with medulloblastoma  history, can do good in school, so don't give up on your grand daughter. She will surprise you one day.

Sameh shaaban
Posts: 11
Joined: Apr 2018

Hello.

Hope everyone is doing great, my son diagnosed with brain cancer medulloblastoma in nov 2017 . After doing surgery total tumor excision and radiotherapy 31 session for total of 5600 CG radition unit . He take 5 weeks of rest . Two weeks ago . We started the chemo protcols which will be 8 cycles . Each cycle will be in day 1 cisplatin , CCNU and Vnc then day 8 Vnc only then day 15 Vnc . Then rest for one month the white cells count falls from 4.2 in the begin  of the cycle to 2.5 now . He in the day 18 now . Doctor say it differ from child to one the count stop fall down . I appreciate if someone has experience with chemo cycles to share what happen in . Thanks 

 

Brown91's picture
Brown91
Posts: 6
Joined: Jun 2018

I am new to the website.

I am not from the U.S, but am looking to be an inspiration and if so speak with others going trhough simillar things as I.

Am 26, going to be 27, diagnosed with malignant medulloblastoma at age 2 and 8 months.

Sameh shaaban
Posts: 11
Joined: Apr 2018

Thanks brown . For replay . Can you share treatment protocol you had gone through . Any side effect of treatmet u had overcome 

Thanks 

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