Tell us a little about yourself.
Allie: I’m 29 years old and currently live in Manhattan with my husband, Todd, and our cockapoo, Oslo. I graduated from the University of Michigan (go blue!) and I have a dream job as an Entertainment Booking Producer at NBC News.
I enjoy spending time with my family and friends (and dog). I love to travel with my husband, sister, and my eight best friends from college. I love trying new food, and eating and drinking my way through all the different cities we’re exploring. I like to work out, read with my dad for our very exclusive book club, take photos, and enjoy life!
Andi: I’m 27 years old and currently live in Greenpoint, Brooklyn with my husband, James. I am a part-time graduate student at New York University obtaining my Masters in Visual Arts Management. Currently, I work at a boutique strategic communications firm, specializing in digital marketing. I like to paint and although I’m not quite as quick as my sister and dad, I like to read too! Naturally, I try to go to as many museums, gallery openings, or public art installations around that city as I can and love spending time with my family.
Share a bit about your loved one’s diagnosis and how your life changed afterward.
Allie: Ironically, I was on my way to Happiest Place on Earth, Disney World, with my best friend the day I found out. My mom had been “acting strange” for a few weeks – forgetful, a change in personality, unresponsive to calls and texts. We thought it was maybe menopause, and never expected that she would be diagnosed with a glioblastoma multiforme (GBM), stage four brain cancer. She ended up having a seizure and, thank God, my dad came home early from work and found her confused in the kitchen. After that, our entire world turned upside down – she was rushed to the hospital, they did a CT Scan, a MRI, emergency brain surgery, and then we got the diagnosis.
We weren’t even sure where to begin. Those days feel like a real blur. Treatment plans, clinical trials, surgeries, appointments, multiple opinions from doctors, second opinions – our heads were spinning but we put one foot in front of the other and tried our best to get as much information as possible so that we could make an informed decision on treatment plans. She was diagnosed at 54 and was sick for almost exactly two years before passing. She had two major brain surgeries, multiple treatments, clinical trials, more MRIs than I can even begin to count, but she always remained positive. It was a remarkable thing to see.
Sometimes, it’s hard to remember life before the diagnosis – everything feels like a whirlwind and for a long time, that was every memory I had of her – the hospital, the treatment, the ups and downs, the laughing the crying, the forgetfulness, the snuggling, the changes in her both physically and mentally. And, yes, that diagnosis is a huge part of her story and our story too, but my mom was so much more. She was the funniest person you’ve ever met, she would literally have an entire group of people in tears from laughing so hard. She was my best friend, I could tell her anything and she would never judge. Being a mother was what made her most happy, and my sister and I feel so blessed that we were able to call her ours. She was inappropriate, asked questions that everyone was thinking but no one had the courage to say. She was a lot more than a GBM diagnosis. I think my Dad really said it best when we were compiling memories for my mom’s eulogy: I learned a lot from Glinda throughout our life together, but these past two years she showed me how to live life with optimism, courage, selflessness, passion, and complete dignity all while facing the most dire situation that any person can face.
Andi: Our mom was just 54 years-old when she was diagnosed with a GBM. For several weeks, my sister, dad, and I noticed that she had seemed “off,” in one way or another. As you would expect, no one had even considered the possibility that the changes in her personality and cognitive abilities were due to a brain tumor. I was entering my senior year of college at Western Michigan University when my dad called. I immediately drove the three hours home to meet my parents at the hospital. It all happened so quickly and I thank God that my dad came home early from work that day after my mom had a seizure.
My life has changed in more ways that I can express since my mom’s diagnosis. I approach everything differently and see the world in a new light. My appreciation for family has changed. My perspective on “the little things” has changed. After being diagnosed, our mom lived life differently and I try to honor her everyday by doing the same.
I don’t think I could say it better than my sister did above. Through her brain tumor diagnosis, our mom taught us to enjoy the simple things. Although our mother’s time was far too short, she taught us how to laugh, love, and always, always dance.
Through a brain tumor diagnosis, it’s important to always remember that your loved one is more than their diagnosis. Our mom was a mother, a wife, a sister, a daughter, an aunt, a friend, and her diagnosis was just one small facet of all the many things she was.
I encourage you to stay involved through the American Brain Tumor Association’s wonderful programming and resources, but to also remember that your experience is significantly different from someone else’s and it’s important to be respectful of that during troubling times.
Talk to us about your relationship with the American Brain Tumor Association?
Allie: Honestly, our relationship with the American Brain Tumor Association really developed, unfortunately, after my mom passed away. When she was initially diagnosed, we used the ABTA as a source of information – they were so diligent about posting clinical trials and medical updates, and we did use the site for that. My sister and I did a caregiver support group through an organization called CancerCares that was immensely helpful, and we heard about support groups through the ABTA. But after she passed away, myself, my sister, and my dad all agreed that we needed to volunteer our time and knowledge to help others going through something similar. It’s just the worst thing in the world, but the silver lining is that you come together as a family and you learn so much about the disease and about one another. We felt that, although we have incredibly supportive friends and spouses, that a lot of people don’t really “get it.” And, why should they?
Extended family say the wrong thing, the dreaded “how are you doing?”, and we felt like we were part of an exclusive club that we never wanted to be a part of. We had a “new normal” as my mom used to say, and we wanted to share our experiences with others. Through the ABTA, we got involved with the CommYOUnity™ Connect mentorship program. The three of us have individually been paired with a number of caregivers who are caring for their loved ones – they want to talk, to vent, to ask questions, to listen. They range in age and experience, some caring for spouses, others caring for parents. The CommYOUnity™ Connect program is amazing and I really wish that we had known about it when my mom was diagnosed because I think we would have gotten a lot out of it.
We’ve also become really passionate about the ABTA BT5Ks. We’ve done a number of them over the years, both with my mom and in memory of her – from Washington D.C. to NYC to Detroit. We’re really proud of the money we raise every year. Go “Glinda’s Good Witches!!!!”
Andi: As my sister mentioned, our relationship with American Brain Tumor Association began through a variety of BT5K walks all over the country. Our mom took it upon herself to find a brain tumor organization that she trusted and believed in, and that was the ABTA. She liked the transparency of the organization regarding where the funding and resources went. Since she passed away, my sister, dad, and I have made the effort to contribute to the organization through fundraising, the CommYOUnity™ Connect mentor / mentee program, BT5K walks, and continuing to raise general awareness around the work that the ABTA does.
Having gone through our experience, I think it’s fair to say we wish we had known more about what the American Brain Tumor Association offers and how we could have better taken advantage. In short, a brain tumor diagnosis affects an entire family and every family member reacts differently. The ABTA offers so many wonderful resources from one-on-one communications to community boards that cover any and all details. It’s important that every person affected by a diagnosis feels empowered to find the support they need, and often times it can come from those who aren’t your family or your friends. Making sure you have a support system during a difficult time is key, and the American Brain Tumor Association does a wonderful job opening those doors for you.
Why do you think its important for people to donate to organizations like the American Brain Tumor Association?
Allie: You have to believe that we’re making huge strides in medical advancements and donating money to organizations to the American Brain Tumor Association makes the idea of finding a cure a real possibility. In addition to donating money, it’s so important to donate your time. Whether it’s becoming a mentor or volunteering at an event, there’s always a need.
Andi: I think it’s important for people to be involved with organizations such as the ABTA because there is still much work to do. As Allie said, there are other ways to support organizations beyond fiscal donations. Your time, listening ear, and vulnerability are the best gifts to give.
In our 45 years, the most dramatic advances are being made now.
Let’s put our brains together to stop brain tumors once and for all. Your donation makes a difference.