“Ed has a brain tumor.”
With those five terrifying words, my world shifted. Future plans came to a screaming halt. Ed, my son-in-law, is a 30-year-old handsome, athletic, smart, and charming Brit, who lives in LA with our daughter Skatie. He resembles Prince Harry — a ginger with the same kind heart too. Nothing mattered as much as helping him find the best possible doctors and treatments as quickly as possible.
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T H A N K F U L – Last week we found a large mass in my husband’s brain. The last few days have been filled with neurosurgeons, specialist appointments and i’m just finally now fully able to process everything. Losing ED is obviously completely unfathonable to me and hopefully will NOT be happening. It would be an understatement to say this has been a memorable Thanksgiving. I am beyond thankful to be surrounded by the most AMAZING family and friends and feel especially grateful to all of them this year. I have been dreading writing about this on social media but feel like this is important to share with all of you as this is REAL LIFE! To everyone who has called, texted or DM’d – THANK YOU! I’m sorry if I have not replied to each of you but I have been super overwhelmed and just trying to be present to Ed and our families. Just know I LOVE and Appreciate you all. To everyone, if you don’t feel OK or normal. Get help! Advocate for yourself and your health! Wednesday at 5AM Ed goes into surgery and the beginning of (hopefully) a smooth recovery begins. I do plan to post more about all of this but for now – this is what I got. This Thanksgiving I am especially grateful for @hutchjohnstone and my entire family. I hope you all squeeze your loved ones extra tight tonight. Happy Thanksgiving!
This wasn’t the first time our family has faced a major medical crisis with the potential to forever shatter life as we knew it. Our pediatrician, Dr. Richard Weinstein, diagnosed our son James with a possible case of meningitis when he was a toddler. “Get yourselves to the Evanston Hospital Emergency Room as fast as you can,” he demanded, “without having an accident.” It was dark, miserable, rainy November evening; but, we sped fast.
The ER staff met us at the door and whisked James into rapid treatment. He convulsed with seizures while they stuck the spinal tap needle into his tiny spine. Talk about hard for a mother to watch! The fluid ran cloudy — a sign of bad infection — and a quick lab analysis determined that our son had the second most deadly or brain-damaging type of bacterial meningitis, caused by haemophilus influenzae. Despite quickly starting antibiotics, the seizures worsened and continued for many hours. When they finally subsided, they left James comatose. He stayed that way for almost a week.
We imagined life going forward with a badly damaged child; permanent brain damage and hearing loss are common outcomes. Happily, though, James eventually returned to his normal self. He not only survived, but as time passed, he also thrived. James never seemed to feel pain the way other kids did. His thought processes were so mature that his older siblings nicknamed him “Logic Man.” We still wonder, did the meningitis actually make his brain work better?
We’ll never know the answer to that question. But, we are now certain and forever grateful that Weinstein’s initial diagnosis, combined with the consistently outstanding care James received at the hospital (now part of NorthShore University HealthSystems), saved his life and preserved a hopeful future for him and the rest of our family. That’s one of the reasons that we try to support the hospital’s fundraisers like the American Craft Exposition.
As a board member for Ann & Robert H. Lurie Children’s Hospital of Chicago, I’m mindful that we need to help as many children and families as possible access its world class health care. Really, all kids deserve the same level of excellence that James received at NSUHS and that Lurie Children’s routinely provides.
Fast forward to last November and Ed’s stunning diagnosis. I felt struck by a similar terror and panic. We needed to find a top doctor and outstanding medical facility to treat him, and fast. Fortunately, Ed found his way to USC’s Keck Medical Center and neurosurgeon, scientist, inventor, author, fundraiser, and renaissance man Gabriel Zada, MD (being honored here at a USC football game):
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Although #USCfootball held off #OregonDucksfootball for only one quarter, it was nice for #KeckMedicineofUSC and #USCNorrisCancerCanter to be honored on the field for #Cancer care. With good friends and colleagues. #FightOn. #USC #Neurosurgery #BrainTumor #Trojans #coliseum @neurosurgeryusc #pac12
The surgery was successful. Ed is healing rapidly. We will be paying forward this blessing the rest of our lives too.
Stories That Inspire
Surveys and ratings like Marin Magazine’s (415) Top Doctors can be so helpful when you or a loved one need to find a great doctor fast. That’s one of the many reasons I’m proud that we publish this annual, comprehensive guide. It’s a lot of heavy lifting by our small but mighty staff; but, their thoughtful work can help you and your family in a time of crisis too.
Sadly, not all health stories end as happily as my family’s, but even when the worst happens, people have found meaningful ways to give back by starting foundations in honor of their loved ones.
- Leukemia Research in Memory of Barbara Timmer
- How Hank Left His Mark: Join the Henry Schueler 41 & 9 Foundation in Supporting Children Diagnosed with Acute Lymphoblastic Leukemia
- Sepsis: The Little-Known Illness That Took a Marin Tennis Star
I’m equally proud that all of Make It Better Media Group is designed to amplify philanthropy and other forms of giving back, by grateful others or as part of corporate social responsibility efforts. Every dollar raised for philanthropy and research in the medical field can have extraordinary impact! The world is full of good people, doing good. All of those stories need to be shared and connected with a broader community too.
Some of my favorite stories we’ve published follow. I hope that they will inspire you too. Furthermore, I hope that you will send us your giving back story as a “You Said It.” It could be selected by our editors for inclusion in a future Better Letter too.
- Better Makers: 40th Annual JDRF One Dream Gala Sets Global Record in Quest for Type 1 Diabetes Cure
- Inspiration and Transformation: Shirley Ryan AbilityLab Combines Pathways and RIC
- Teen Leadership Council Breaks Record with Dance Marathon for Ann & Robert H Lurie Children’s Hospital of Chicago
- Melissa Blaustein, Sausalito’s Star Swimmer
- Heart Attack Leads Adoptee to Mind-Blowing Family Discovery
- Eco-Entrepreneur Jeannie Jarnot on her Ethical Beauty Company, Beauty Heroes
Susan B. Noyes is the Founder & Chief Visionary Officer of Make It Better Media Group, as well as the Founder of Make It Better Foundation’s Philanthropy Awards. A mother of six, former Sidley Austin labor lawyer and U.S. Congressional Aide, passionate philanthropist, and intuitive connector, she has served on boards for the Poetry Foundation, Harvard University Graduate School of Education Visiting Committee, American Red Cross, Lurie Children’s Hospital, Annenberg Challenge, Chicago Public Education Fund, Lyric Opera of Chicago, Chicago Symphony Orchestra, New Trier High School District 203, and her beloved Kenilworth Union Church. But most of all, she enjoys writing and serving others by creating virtuous circles that amplify social impact.