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Glioblastoma IDH Wild Type

allisong1186's picture
allisong1186
Posts: 1
Joined: Nov 2016

Hi,

   I'm new to this and am looking for support I suppose. My dad was diagnosed in Seattle with Glioblastoma IDH Wild Type. From April 2016 to August 2016 my dad's tumor went from 2cm to 9cm. In April we are guessing while on a scaffold the he had is first seizure, somehow he was able to get up and make his way to the house limping and bleeding. Once he got inside he proceeded to have another few seizures and was life flighted to Canada. There he was told he had a 2cm leisian and was recommended to come back for more tests in a month.

   My dad is stubborn and I think he wanted to enjoy what he thought would be his last summer in his beloved home in Canada. After another set of seizures and being life flighted he was sent home with seizure medication. Around mid July the symptoms began. He lost his power of speech and was unable to walk because of the lack of function on his right side.

    I was supposed to pick him up from the airport on a Monday and then maybe Sunday and then I got a call Sunday morning to fly to Seattle. When I got there and saw him we both sobbed. That entire trip I sobbed. We weren't sure if he would choose to fight. I thought this would be the last time I ever got to see my dad and that my daughter wouldn't get time with the man that raised me and made me who I am. The doctor came in saying he could possibly get most if not all of his tumor. I signed the papers that day for his surgery. The day he got the surgery I was on a flight back to Houston.

   It took what felt like eternity to get him home to Houston for further treatment. In Seattle they were so negative. They told him he had 3 months to live and never gave him hope, but once he got to Houston things turned around a little bit. After getting some therapy and working with the doctors at Methodist their positivity boosted him and he decided to move forward with the fight and get radiation and chemo. At first radiation and chemo were going well and he seemed upbeat and strong. He eventually got to come home while recieving treatment and therapy. He has slowly seemed more depressed and has less desire to see people.

     Then a week ago he had a seizure at the dinner table. It was small, maybe 30seconds. The next day he went to the doctor and was ordered to have scans done early. The next day they called him in to tell him there was a new tumor next to the old tumor. With such an aggressive tumor they want to act quickly. They signed the papers for another extraction for December 6 and to start a clinical trial as soon as possible.

And now here I am. Everyday I feel worry. This is an aggressive cancer and I don't feel like I know enough. I cannot stop researching. My boyfriend wants me to be possitive and I can't out of pure fear. What if I'm not prepared and it happens and I don't have him anymore and I believed in miracles? And then my best friend the woman that has been with me through it all is my realist. She listens and she has been through this, so she understands. She lets be angry and sad. I want to know what others are going through? What they went through? Where did you come from? What is your story?

 

Tell me your story. My name is Allison by the way and that picture is of my dad and I in Hawaii.

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