Today's Brain Tumor Warrior is different from the others I've posted about. He was not a child, but the father of a friend of mine. Adults get brain tumors too! My friend, Sharra, was kind enough to answer my request and type me a letter about her dad. I don't want to change her words, so you will be reading from Sharra's heart today!
Today's Brain Tumor Hero
In Memory of
Joe Mattingly
Joe Mattingly
My dad, Joe Mattingly, was diagnosed in early 2000 with a glioblastoma multiforma brain tumor after severe headaches took him to the ER. He fought valiantly for 29 months before an aggressive recurrence took him from us. Our family feels blessed to have had so much time with him after his diagnosis and learned so much that we try to pass on to other friends struggling with their own battle.
Here are some lessons learned: 1) Don't take your first prognosis as gospel! Seek 2nd & 3rd opinions if you can. We were told by the top neurosurgeon in Dallas that my dad's tumor was inoperable & nothing could be done. We immediately followed up with a 2nd opinion, which leads to our next lesson…2) M.D. Anderson Cancer Hospital in Houston, TX is a research hospital that accepts self-referrals! Another doctor does not have to refer you for care. Since it is a research hospital, they want people of all nationalities, social, & economic backgrounds. Once we sent dad's MRI to them, they called the next day & asked how quickly we could get there. Research hospitals are doing things that regular doctors don't even know about. Sometimes they still may say nothing can be done, or they may say "what your doctor has recommended is the best course of action," or they may inform you that a certain treatment is possible but you have to decide if it is worth the risk, difficulty, or if it is too extreme for you to accept. 3) Your (or your family member's) records are yours! Ask for copies of tests, diagnosis, treatments, medications, and any films, & X-rays. If you go for another opinion or are able to travel, having these records will save you time & money - especially since your insurance may frown on duplicate tests within a short period of time. 4) Keep organized records! As soon as my dad was diagnosed, my mom bought a huge binder with divider tabs. Inside, she organized insurance information, disability paperwork, doctors' records, test results, insurance claims, receipts, medication dosages etc. She carried this with them wherever they went. 5) Attend a support group & any therapy recommended! A brain tumor support group was great for my mom & dad because it helped them not only in how to deal with the disease & its effects, but practical advice for dealing with insurance, daily issues, pros & cons of various medications. It also reminded them that they are not alone - others are right there in the battle with them. Cognitive therapy was great for my dad in helping him use the parts of his brain that were affected. Puzzles & other activities helped him know that he was actively fighting against the cancer. 6) Hospice is an amazing ministry! If it comes to this stage, do not be afraid to talk with hospice. For us, they made the last stage bearable by helping us communicate with the hospital & sharing wisdom with us that gave us the assurance that dad was comfortable.
My dad was a very successful engineer, and unfortunately, was never able to return to work. But the blessings that we all received were abundant! He was able to spend an extra 2 1/2 years with each of us in valuable time spent talking, sharing, and saying the things that we needed to say. Because of the extra time, he took more walks with my kids, spent time teaching the boys to whittle, coloring and playing with my youngest daughter and niece who were only 3 years old when he passed away. But, they remember Pepaw as fun and taking time for them, not sick. When my dad's last recurrence was beginning to make him feel like "something just wasn't right," our whole family, mom, dad, my sister & her family, & my family with all 4 kids were on a Disney cruise. We have great memories and pictures! I'm glad that before he became a "trailblazer" for our family to heaven (as he told my kids, being the hunter & outdoorsman he was), he chose to fight for more time. We miss him & love him, but more than anything, are thankful that because of Christ in our lives, and his, we will one day be reunited!
Blessings!
Sharra Mattingly Wilson
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