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Tony’s glioblastoma/HPAP battle

Holmen, WI

Story

Tony was working away from home 10/27/24, he just finished making some moves when he stopped responding over his radio. His conductor entered the locomotive and found my husband shaking. Tony suffered 2 grand mal seizures which then stopped his breathing. The local hospital lifeflighted him to UW Madison. On Nov 21, 24 he had a craniotomy and he was diagnosed with Glioblastoma, Wildtype, unmethylated. This is a horrible cancer with no cure. Treatments can sometimes delay the outcome. Right now he was given 2 years with SOC. He finished radiation on 2/14/25 and on 3/17/25 he will begin the 5/23 and optune on 3/17. He is looking at clinical trials and currently we are at Northwestern where he will be evaluated for one trial. Tony was the wage earner for our family. 7 years Air Force and 20.3 years with BNSF Railway. His sickness benefits will expire in the next few months and he has applied for disability, though expedited it will take a year we are told to be approved, if approved. I am unable to return to work as I am his caregiver, driving him to and from all appointments l, helping to dress him, managing all schedules, medications, all the paperwork, making sure bills are paid on time and anything else that comes with this role. We have 2 others in our home right now, the oldest cares for the littlest while we are at appointments. The littlest is homeschool and that has been a blessing for us during this journey. Grandpa is able to do school work with her and that helps rehabilitate his brain.


Special Notes

Janice has a poultry allergy, but the rest of the family is ok with it. Please try to avoid onions and mushrooms for the 2 kids (1 is an adult) at home.

Care Calendar

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