Embryonal Brain tumor

Posted by holly56 @holly56, Thu, Jan 17 12:02pm

My son who is 27 was diagnosed and had surgery to remove tumor, it apparently so rare, especially in adults. I am looking for family members who have a loved one and have experienced this hell of watching your loved one go through such a difficult time along with the family.

hi @holly56 and welcome to Connect. It is such a challenge to find others with rare tumors, such as embryonal tumors.

I'd like to introduce you to @aworriedmom @dgruk @lmp1 and @csaylor who is are parents of adult children living with brain tumors. They know first-hand what it is like to watch a loved one and the family go through such a difficult time.

Holly, did your son live with you at the time of diagnosis? Does he live with or near you now?

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Hi!
Our daughter was diagnosed with a rare (Craniopharyngioma) brain tumor at 27 yrs, and is post craniotomy (4yrs) and Proton Beam radiation.
As grateful as we are for the excellent care and treatment she’s received since diagnosis, it’s not easy seeing your child, regardless of age, go through the changes and loss of dreams due to brain tumor. In fact, it sucks!
I’m glad you found this Connection. If you live in MN, the Brains Together For A Cure support group for patients and caregivers meets monthly at Hope Lodge in Rochester. It’s a great group of welcoming, experienced people and physicians.

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@cads when does the support group meet?

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Sorry, the 3rd Saturday of every month, 10am-noon. Next meeting is Sat, Jan. 19th.

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Brains Together For A Cure Meetings

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@colleenyoung

hi @holly56 and welcome to Connect. It is such a challenge to find others with rare tumors, such as embryonal tumors.

I'd like to introduce you to @aworriedmom @dgruk @lmp1 and @csaylor who is are parents of adult children living with brain tumors. They know first-hand what it is like to watch a loved one and the family go through such a difficult time.

Holly, did your son live with you at the time of diagnosis? Does he live with or near you now?

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Thank you Colleen for reaching out and connecting me to others. My son has been in the hospital since diagnosed on December 12th, 2018. He had just finished 9 years of service in Army in June and was looking forward to his next chapter. He loves music and enrolled in college with GI bill on 1/7. So he was living with us during the transition and then his life was suddenly turned upside down. We live in NC and he is at Duke Brain Tumor Center.

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@cads

Hi!
Our daughter was diagnosed with a rare (Craniopharyngioma) brain tumor at 27 yrs, and is post craniotomy (4yrs) and Proton Beam radiation.
As grateful as we are for the excellent care and treatment she’s received since diagnosis, it’s not easy seeing your child, regardless of age, go through the changes and loss of dreams due to brain tumor. In fact, it sucks!
I’m glad you found this Connection. If you live in MN, the Brains Together For A Cure support group for patients and caregivers meets monthly at Hope Lodge in Rochester. It’s a great group of welcoming, experienced people and physicians.

Jump to this post

Thank you for sharing your story. He has been in hospital 37 days and 3 surgeries. I am not sure if he will be able to withstand the 4-6 weeks of radiation treatment but it is our only hope. This tumor is so aggressive it spread throughout his brain and into his spinal cord. So sorry to hear about your daughter. How is she doing now? I do not know if my son will make it, he is fighting like the soldier he is. He will need extensive rehab as the first surgery left his whole right side immobile and significant speech difficulty.

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Hi @holly56, it's time for me and @cads to check in again. How has radiation been going? How are YOU?

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@colleenyoung

Hi @holly56, it's time for me and @cads to check in again. How has radiation been going? How are YOU?

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Derek has made it through 6 weeks of brain and spine radiation and he has come so far and his personality is coming back and is eating so well! This was on top of a shunt and a revision of the shunt surgery in addition to a temporary feeding tube which helped him tremendously. Received amazing news last night. 🙏🏻🙏🏻Wakemed hospital has a bed available on Wednesday on their neuro inpatient rehab and Derek’s insurance has approved it. Duke Docs will give Derek the Avastin infusion today which they feel will continue to help him feel better and kill off any remaining tumors. That will need to be done here at Duke every 2-4 weeks and not sure for how long and how we monitor for any new tumor growth yet. His tumor was is a Glioblastoma and Embryonal mix, has anyone heard of other people having this type of brain tumor? OT PT has been able to get him from bed to recliner for a few hours the last couple days🙏🏻 Derek said he is ready to go and let’s do this 🙏🏻🙏🏻 He has been in hospital ever since his first brain surgery, 72 days ago. Through Derek’s amazing strength and perseverance, along with the medical expertise and loving care, and the rallying of so many kind thoughts and powerful praying from around the world, Derek is one step closer to coming home 🏡 So much uncertainty yet are blessed we have him and hope 🙏🏻

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Anyone going to the next Brains Together For a Cure event? Here's more info: https://connect.mayoclinic.org/page/cancer-education-center/newsfeed-post/brain-tumor-patient-and-family-education-symposium/

Hopefully as the weather gets nicer, you'll be able to make it. For anyone who attends, it would be great to get a synopsis.

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