My father has been diagnosed with terminal brain cancer for over a month now and honestly it still is hard to swallow. I find myself thinking about the future and I have to stop myself because my future is way too scary to think about. I need to focus on my life and family’s life at this moment. I can only “somewhat” control the present. The hardest thing for me is the fact that my dad is one of my best friends and I didn’t realize how close we were until this happened to him. I didn’t realize the things I take for granted every day that my dad used to do for me. He is the father that gave all of us guidance. He is the one I always talk to about my classes and my major because we share that common interest. He is the dad that took time out to do the tooth fairy money and make it special by giving us foreign coins, half dollars, and silver dollars. He would also make it special by wrapping floss around them or making special shapes out of the money. The tooth fairy money was so special to me that I never spent it and instead I created a small coin collection.
These last couple of weeks my dad has been very quiet and only answering questions by nodding his head or saying “yep,” which is not like my dad at all. I always wonder what’s going on his brain. I always ask him, “Do you know what you want to say and you just can’t get it out?” He will reply by shaking his head yes. When he was in the hospital he had a seizure and couldn’t get any words out for about 15 minutes. I asked him how it felt when he was trying to talk. He explained it to me by saying it’s like getting punched in the stomach and getting the breath knocked out of you and you try so hard to talk but words never come out.
One of the things that make me happy is the fact that my dad is happy. I hardly ever see him not smiling. Even when he goes into radiation he has a smile going in and a smile going out. My family and I took family pictures and each of us kids got to take an individual picture with dad and dad kept tearing up in the pictures. I remember with tears in his eyes he just looked at mom and said, “I am just so happy.”
If we didn’t have such a great support system of friends and family I’m not sure how we could get through this. My family and I are so blessed to have a community like we do. Everyone has stepped up so much and we will forever be grateful. My dad owns a business and his employees had to step up to help keep it going. My dad’s longtime friend and right hand woman Ellen Shepherd has helped me so much. She is the one who is making the t-shirts free of charge and is helping me raise money for brain cancer research. This is just an example of how people have been helping us.
This cancer is an awful cancer. It is so rare and affects people differently than other cancers. This particular type of cancer is different from others because it affects a person’s thinking ability. For our situation I feel like this brain cancer affects my family more than it does my dad. I’m not saying it doesn’t affect my dad because it certainly does. But I can’t help but wonder if dad really knows what’s going on. It is just hard on my family, especially my mother, because we are seeing a loving father and husband slipping away from his normal self.
That is why I must spread the word about this cancer. I want this cancer – gliomatosis cerebri – and brain cancer in general to be well known. I want to do whatever I can to help find a cure. I want to be like Emmie Minter and her family from Elizabeth’s Hope and spread the word and make a change. The first FDA approved medicine in 10 years came out a couple of weeks ago for glioblastoma. Gliomatosis cerebri is a type of multi-form glioblastoma. My challenge for everyone reading this is to spread the word and don’t be scared to ask me any questions. I have raised $2,000.00 so far on selling t-shirts for brain cancer research. I plan on raising much more because the look on my dad’s face when I tell him every week how many t-shirts have been sold is the greatest feeling and seeing the tears in his eyes when I tell him how many responded to his website is what I live for.
* I would like to thank everyone who has bought a shirt and has helped me sell them. I could not do this without you. I would like to say a special thanks to my grandmother who has helped me organize them. Feel free to comment and spread the word!! What’s YOUR Fight?
Great story Kathleen! I know my mom paid for our shirts but I would like to donate too. Let me know when they come in and we can meet up.
OMGOSH Gal, I am SOOOO proud of you. You really have a way with words and there is not telling how many people you will influence and help. Love you even more than before.
You are an AWESOME tribute to your dad. I know he is soooo proud of you! I want to order a shirt. Stay strong!! You are blessed!
Your blog is really great! Your dad taught me a great deal while I was on the CA school board with him. He is a very talented man. I pray that a cure will be found!
Very moving tribute to a unique and wonderful man. Your parents must be so very proud of you!
Prayers going up! God will give you strength you didn’t know you had. God bless you and your family!
Kathleen you are so special. I know your dad is very proud of you and proud of the wonderful woman you are becoming. We ordered our shirts at school and please let me know if I can help you in any way.
So sorry to hear about this Daryn, let me know how I can buy a shirt!
I don’t know you really well, Kathleen, but I know that trials in life make us aware of courage and guts we don’t even know that we possess. And God grows us through them…and we all have at least one major thing in our life to come along that we just cannot understand or make sense of, but that is why He is God and not us. What you shared is beautiful and you are doing a great job. I know your family is proud of you. Thank you for standing up in a time of such raw emotion in your life, sharing your story and your cause. May you and your family feel God’s presence each and every day as you travel this road whose course has not yet been charted.
I don’t know your family,but I have worked for Southern Ingenuity now for five years. I am so glad your Dad created this company. I love every minute of my job. I have never known such joy could come from a job. Thank him for me. Ever since I heard of his illness you have all been in my thoughts and prayers. I pray that God will give you peace in the midst of your storm. Peace that only He can give.
Kathleen, your strength is amazing and I am so proud of you! Right now more than ever you remind me so much of your Dad. You both are always smiling – throughout it all – and constantly encouraging others! Your dad has a special gift for helping those in need and you have definitely inherited that from him. He is truly a wonderful man that has taught us all so many valuable lessons. One of those lessons is to never give up and we surely aren’t giving up on him!
Kathleen, few in your position could have stepped up the way you have. We have all noticed and all are proud of you. Just let me know how to donate. Love you.
Darling, you are wise beyond your years! Your whole family is proud of you! I am in awe of you and your maturity, your writing skills, courage, and kindness. I would like 3 t-shirts, 2 triple x and 1double x . Please know that I am with you and your whole family in prayers and love. I do love you all, especially your sweet Mama. She has been the light of my life ever since she was born. If you tell me the price of the shirts, I’ll send it in. I love you sweetheart.
What a beautiful tribute to your wonderful father. Right after my husbands 45th birthday he began getting dizzy. A trip to the emergency room in Minden revealed a large tumor. I will never forget the moment the doctors told us it was glioblastoma. We have 4 daughters, at that time (2009) they were 13,11,8 and 4. Off to radiation and chemo we went. We found a clinical trial through the website- clincaltrials.gov- we fought a great fight. My children were blessed with 26 good months with their father . Nov 16,2011 he went to heaven. During Scotts illness my girls went to a birthday party at the Karate studio. They fell in love with karate. They also fell in love with your Dad. Sensei Stanley and Trish helped us to keep our children in classes with them until October of last year. Along with them your Dad holds a very special place in my heart. They filled a huge void for my children during that time. A Daddy can’t be replaced but I can tell you that their love, leadership and encouragement helped more than words can say. Your father always greeted us with a great big smile and always spent extra time with my girls and visited with my husband alot. My youngest, now 7, has cerebral palsey. One day i asked Daryn what he did other than karate, he very proudly told me how his work was as great as karate for him. He got to help people for a living. He told me to contact his company to find out what help may be available for her. I really need to do that. As i write this and my tears fall i just wanted to let you know my daughters and i are praying for your family everyday. I believe God takes everything we experience in life and gives us little miracles and blessings from it. The wonderful new friends we made throughout my husbands illness is proof of that for me. I’m proud to say your Dad is one of them! May God bless you on this journey!
Kathleen, I am so proud of you! I pray for your Dad & for your family as you go through this time of trial. I will be glad to help you in any way that I can. Let me know when you were in town again and I will get with you about we at St. John’s can do to help with your mission. It sounds like something I would like to get the Christian Ed Dept. involved in, and maybe more. Love to you all! Mary Beth
His Love never fails. Still praying for your family!
I found your flyer at the Broadmoor YMCA. We will be at Texas Roadhouse tonight. My husband is a 4 1/2 year survivor of GBM. We were living in in Houston at the time so we went straight to MD Anderson. At the time, my husband was 39 years old, we had a 5 year old an an 8 week old. He underwent surgery with a 40% removal, radiation for 6 weeks with chemo and then a clinical trial with targeted therapy that continues to this day. We moved back to Shreveport for me to have family support. This is very hard on the family. His deficits are considered minimal, but they are there. Please know I understand. I hope we see you tonight. We won’t be hard to spot, my husband has a scar on the right side of his head with very little hair since radiation.