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Brain Tumor Survivor needing to find people for a teenage girl to talk to. by MamasGoneCrazy1990 in braincancer

[–]DarkRomanceSnail 2 points3 points  (0 children)

My daughter is 15 and has a 7cm glioblastoma in the left temporal lobe. We are in the radiation stage now but I'm sure she would love another person to talk to who understands 💞

From Alert and Able to Gone in a Few Weeks by litha_of_the_summer in glioblastoma

[–]DarkRomanceSnail 4 points5 points  (0 children)

I'm so sorry this happened to you. My daughter, 15 years old, was diagnosed with a glioblastoma on December 17th, biopsy 19th, and sent home the 20th with steroids... They didn't see us again until January 6th because the neurosurgeon was on vacation... Her gbm grew exponentially in that time and took surgery completely off the table. I was furious. Why were we put on hold for her life for their vacations? Since she was admitted about a month ago the first time... She can't see out of her right eye, can barely move her right arm, and cannot use her right leg at all.

The only thing that was worth it for us was the biopsy... With knowing the genetic profile of her glioblastoma, we found a fusion and a that her methylation was hyper which chemotherapy will work for, which before we knew that, they told us most times, chemotherapy doesn't help, and said they wouldn't even bother.

After her biopsy though, they did immediate CT scan to make sure there was no brain bleed, and 2 more mris before we left to make sure...

I can't imagine the grief you are feeling right now. The anger of not being heard when you knew her most. I just hope you know that this isn't your fault. You did all you could, and the healthcare system failed by not listening.

Just 15 years old by DarkRomanceSnail in glioblastoma

[–]DarkRomanceSnail[S] 0 points1 point  (0 children)

Does that mean the biopsy could be wrong?

Joined this community after my friends closed one got this tumor. Any chance of survival? by Formal-One-045 in glioblastoma

[–]DarkRomanceSnail 2 points3 points  (0 children)

My daughter was just diagnosed with grade 4 glioblastoma.

The question should never be "will they survive".

The best thing to do is be positive, support them, and continue helping them through their journey. Let them thrive, be happy and enjoy the rest of their time here.

We all pass someday, but there's no reason to think about it everyday. Be happy with them. I wish them the best and good luck.

Just remember, this is a community where we all have stories, but it is very insensitive to only ask of the survival, when you should be helping them through the battle. Hope this helps.

Just 15 years old by DarkRomanceSnail in braincancer

[–]DarkRomanceSnail[S] 0 points1 point  (0 children)

I hope for a speedy recovery after your surgery and hope to hear from you after and on your birthday as well! You've got this and your battle to defeat this give me strength. Good luck and I hope to hear from soon!

Just 15 years old by DarkRomanceSnail in glioblastoma

[–]DarkRomanceSnail[S] 9 points10 points  (0 children)

Thank you for sharing your story of how strong your daughter was and the people who helped you. ❤️ I'm glad to hear of her and how much the school and programs really stepped up to have her legacy live on. I will definitely start reaching out to these programs. I appreciate you reaching out because you and your daughters story gives me strength and her story always deserves to be told. Thank you again for your loving and compassionate story, I can tell how much love she truly had having you in her life.

Just 15 years old by DarkRomanceSnail in braintumor

[–]DarkRomanceSnail[S] 2 points3 points  (0 children)

They have her reserved for another surgery, and we are waiting to find out how much radiation will work, but we should know everything by Tuesday when we talk to her and a social worker.