Loss of adult child to brain cancer

Posted by holly56 @holly56, Tue, May 7 7:03am

I have posted a few months back, when my son, 27, was suddenly diagnosed with a primary brain tumor in left temporal lobe on December 12, 2018. After 3 brain surgeries and 6 weeks of brain and spine radiation, He spent 4 months, fighting like the warrior he is, battling what was a rare Glioblastoma and Embryonal Tumor (CNS) hybrid Tumor .. The tumor in his brain ended up a mix of Embryonal, which meant tumors spread throughout brain and in spinal cord via cerebral spinal fluid. April 10th, after all treatments to fight this monster cancer were exhausted, the tumors came back and my precious son passed in hospice on April 17. It has been unbearable, as those on this site know all too well. I know we all grieve for our losses, parents aren’t supposed to write the obituary and plan a service for their child, nor their siblings. Is there anyone that has experienced this type of brain tumor that leaves the brain, travels throughout the CNS and paralyzes a soldier of 9 years to not leave a hospital bed until Hospice. I am desperately looking for other people who experienced this type of cancer as it is rare and leaves me and my family completely at a loss as to cause. We are told it is due to cells splitting abnormally and more molecular and very rare and “extremely bad luck “. Our docs and medical team have been wonderful but so much unknown about this hybrid of tumor.
Sincerely,
Holly Derek’s mom

@daniellemarie

Hello my name is Danielle…. I lost my 10 years old daughter Danica 1-28-19 to PXA brain tumor/cancer. It’s been very hard to live and go through this pain 💔😭

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Danielle, So very sorry. Why do these things happen? They say ‘pray’ but does that really help?
Here’s my recent story (sorry its lengthy)……bless you.
—————————————-
I just returned from our girls week at 8pm on June 2 and talked to my husband about what fun our daughter and I had that week. Every year I visit her for girls week. At 6:15am that very next morning our son in law called us. We immediately, in shock packed and drove to Ohio ( we live in SC). Our daughter didnt make it to the hospital. I still cant believe shes gone. We are lost, empty and feel its all surreal.
Our daughter was generally fine, however she was taking Tamoxifin which has several bad side effects, worse of which is blood clots, which is what happened.
She was taking it for a year and her doctor only saw her twice. She also had other side effects, etc. I will write more later. We need help dealing. She was our only sweet child, a teacher and LOVED by everyone. She was amazing and was involved in many charities, projects, always giving, loving, helped everyone with anything, kind, people loved her.
We cant deal with this well; cant believe shes gone. We have no family here in SC (Hilton Head area). Not many friends ( they all work, we are retired) so its tough. Her school had a beautiful tribute to her by having a concert, a parade and candle-prayer Virgil. Hundreds of cards were received by us when we came home. I miss my sweet daughter so bad. We cry every day, just sick! Please help. My friend, Terri Martin who also belongs to Mayo Clinic Connect suggested I seek help with Mayo Clinic. Terri is wonderful!
Thank you.
Our daughter just “celebrated”
(July 28) her 15th Wedding Anniversary in Heaven. Yesterday, Aug 1 was her 46th birthday. Help!

REPLY
@ihtak46

Danielle, So very sorry. Why do these things happen? They say ‘pray’ but does that really help?
Here’s my recent story (sorry its lengthy)……bless you.
—————————————-
I just returned from our girls week at 8pm on June 2 and talked to my husband about what fun our daughter and I had that week. Every year I visit her for girls week. At 6:15am that very next morning our son in law called us. We immediately, in shock packed and drove to Ohio ( we live in SC). Our daughter didnt make it to the hospital. I still cant believe shes gone. We are lost, empty and feel its all surreal.
Our daughter was generally fine, however she was taking Tamoxifin which has several bad side effects, worse of which is blood clots, which is what happened.
She was taking it for a year and her doctor only saw her twice. She also had other side effects, etc. I will write more later. We need help dealing. She was our only sweet child, a teacher and LOVED by everyone. She was amazing and was involved in many charities, projects, always giving, loving, helped everyone with anything, kind, people loved her.
We cant deal with this well; cant believe shes gone. We have no family here in SC (Hilton Head area). Not many friends ( they all work, we are retired) so its tough. Her school had a beautiful tribute to her by having a concert, a parade and candle-prayer Virgil. Hundreds of cards were received by us when we came home. I miss my sweet daughter so bad. We cry every day, just sick! Please help. My friend, Terri Martin who also belongs to Mayo Clinic Connect suggested I seek help with Mayo Clinic. Terri is wonderful!
Thank you.
Our daughter just “celebrated”
(July 28) her 15th Wedding Anniversary in Heaven. Yesterday, Aug 1 was her 46th birthday. Help!

Jump to this post

@ihtak46
Oh Kathi I am so sorry for your loss of you amazing daughter. It’s crazy to hear what a wonderful human she was and then she was taken. My daughter was 10 and brought so many people joy and hope. She literally touched our whole community (Sonoma County) known as the “ Princess Warrior” and more within the two years of her battle! People from all over the world prayed for her made videos with signs in there states and sent them which were made into a video that played at her fundraiser and on you tube. I made a #teamdanica page on Facebook right when she got diagnosed so everyone that loved her or cared could see what was going on and her progress what out daily life was like. It was like a journal of our journey and a update site which brought us so many prayers (prayer warriors) love and strength. It’s what also helped me as I went and still go through it. I still update the page. September 15th will be her 11th bday and her first in heaven. This has been the hardest thing to go through and I’m only here still because I have a 8 year old who needs me. We are celebrating Danica’s 11th bday this month by having an event at the ocean on her bday at night called “light up the sky for boo” which is Chinese lanterns we are lighting up at a spot that’s over looking the ocean and safe to light them and watch them float up to her. It’s going to be beautiful and I know where ever she is she’s going love it. I miss her so bad. I don’t even know who or where I am or going. I’m completely detached and drained from pushing myself through each day to just wake up and repeat the same nightmare and pain each day. I pray for your pain to be lessened and guidance to show you the way. No will ever know our pain unless they have loss and buried there own child. It is a nightmare we live in everyday. When they left half of us went with them. 💔😭🙏🏻

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