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Thalamic brain neoplasm: What are our options?

Posted by soccermom999 @soccermom999, May 10, 2021

My 28 year old daughter was just diagnosed with a lesion in her thalamus just a few days ago. We are trying to determine next steps. She will be discharged from the hospital today. The neurosurgeon is recommending treating with radiation even without a biopsy. We are trying to research other options and MUSC in Charleston, University of Miami, Duke Tisch Brain Tumor Center and Mayo Clinic in Jacksonville. She is leaning toward having a biopsy but trying to determine which program to contact and which direction to take. We are all devastated at this point. Appreciate any advice. Thank you.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 23, 2021
In reply to @soccermom999 "Thank you so much. We are all so devastated. She does not currently live near any..." + (show)
@soccermom999

Thank you so much. We are all so devastated. She does not currently live near any of the Mayo facilities but we do so we are talking about her coming to live with us possibly.

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@soccermomm999, I so admire how wonderfully supportive you are of your daughter. She undoubtedly is grateful for your love and caring during this time. I know that this is stressful for you all.

Will you be able to post after the video conference? I would be interested in what their opinion would be.

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1 reply
soccermom999 | @soccermom999 | May 24, 2021
In reply to @hopeful33250 "@soccermomm999, I so admire how wonderfully supportive you are of your daughter. She undoubtedly is grateful..." + (show)
@hopeful33250

@soccermomm999, I so admire how wonderfully supportive you are of your daughter. She undoubtedly is grateful for your love and caring during this time. I know that this is stressful for you all.

Will you be able to post after the video conference? I would be interested in what their opinion would be.

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I sure can. Thank you for your kind words. I’m thankful for this forum.

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soccermom999 | @soccermom999 | May 25, 2021

Had the video conference but basically we have to wait for the final pathology to be back. Probably another week. The waiting is agonizing.

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1 reply
Amanda Roe | @amandajro | May 28, 2021
In reply to @soccermom999 "Had the video conference but basically we have to wait for the final pathology to be..." + (show)
@soccermom999

Had the video conference but basically we have to wait for the final pathology to be back. Probably another week. The waiting is agonizing.

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@soccermom999 we are here for you. What are you doing to get through the waiting?

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soccermom999 | @soccermom999 | May 29, 2021

Well my daughter has been so sick that looking after her has filled my days. We are back in the hospital due to her symptoms and she had to have a VP Shunt put in.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 29, 2021
In reply to @soccermom999 "Well my daughter has been so sick that looking after her has filled my days. We..." + (show)
@soccermom999

Well my daughter has been so sick that looking after her has filled my days. We are back in the hospital due to her symptoms and she had to have a VP Shunt put in.

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Hello @soccermom999,

So sorry to hear that your daughter had to be hospitalized. Is the VP Shunt relieving her symptoms?

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soccermom999 | @soccermom999 | May 29, 2021

No yet but hopeful it will soon

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1 reply
KeepingHeadUp | @elizabeth513 | Aug 26, 2021
In reply to @soccermom999 "No yet but hopeful it will soon" + (show)
@soccermom999

No yet but hopeful it will soon

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Hello, I am so so sorry to hear about your daughter and everything she is going through. How is she doing today? Did you ever get into a Mayo Clinic?

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