Katie and Jessica: You Are Not Alone by The Robyn Nest

BonBon Break


Back in August, the story I wrote about Rory’s anaphylactic reaction to a cookie with nuts in it went from Just Eat Real Food to Scary Mommy to MSN all within a few days. Val, the editor of Bonbon Break, discovered my blog through that post and in the end of August I got a note from her praising my writing and asking if she could publish my apology note to my husband. I was overwhelmed with the attention at the time and very emotional about constantly reliving Rory’s experience. I was not keeping up with responding to people individually, but I wrote Val back. She ran the letter in September, and we did not speak again until the first couple of days of October when I approached her with another piece I’d written, which she said she would run the following week.

On October 9th I briefly scanned Bonbon Break’s Facebook page for the first time in a month and saw a post from Val two days prior that read, “Celebrating the BEST post I’ve ever read.” I wondered what it was but honestly, I’d wasted enough time on Facebook that morning and I closed it down.

Hours later, thoughts about that post crept into my mind. What could possibly be the best post she had ever read? Was it really that good? I logged back into Facebook, went back to their page, and scrolled through till I found it. I clicked.

What I saw blew my mind. The author of the blog, Jessica, had just been told that her MRI results showed that the brain tumor she had removed had not returned. The entry was dated October 7th.

I do not write about it here because it is not my story to tell, but one of my closest friends, Katie, found out in May of 2012 that she had a brain tumor that had probably been growing for decades. She went in for surgery to remove it, but woke up from anesthesia to discover her surgeon changed his mind once her skull was opened and deemed the tumor too dangerous to remove. She had a terrible year of radiation and chemo, seizures and depression, research and optimism, and then changed surgeons to Dr. Liau who told her that they were going to get that tumor out. A few months ago Katie had a second brain surgery and the tumor was removed. Katie is in recovery and physical therapy now.

Katie had her first MRI after the surgery on Monday October 7th. She waited hours for the results and was told that the tumor was gone. I found out when I read her private blog on Tuesday morning. I plastered the news on Facebook. Everyone I know feels overwhelming joy for her.

Katie’s rockstar surgeon is Dr. Liau. Despite living 1,000 miles away, Jessica’s rockstar surgeon is Dr. Liau. Katie’s oncologist is Dr. Cloughsey. When Jessica made the post she was waiting to talk to Dr. Cloughsey. Katie had a very special genetic mutation in her brain tumor called IDH1. Jessica had the same genetic mutation.

I posted to Katie’s Facebook immediately. I said, “Do you know this woman?! You are on the same path!”

Katie and Jessica: You Are Not Alone by The Robyn NestKatie clicked over and read the story. She could not believe it. She e-mailed Jessica the next day. They spoke on the phone for hours for today. They are living the same life. They are now sharing stories and therapies. They already had the same nutritionist.

Neither Katie nor Jessica have ever met another person living with their exact situation with the same tumor and same uncommon genetic mutation. They had the same terrifying seizures. They have the same ups and downs. They are doing the same research. They had both gone from having long blonde hair to short brown hair, and Jessica’s has grown out again.

Val at Bonbon Break had only just met Jessica for the first time. They have a friend in common, and went to dinner a few weeks prior to Jessica’s MRI.

Katie and Jessica figured they must have just missed each other at Dr. Cloughsey’s office on Monday, October 7th. Then it dawned on Katie after they hung up the phone– they did not miss each other. They looked right at each other. They saw each other in the packed waiting room and again later when they were in side-by-side rooms. They both stuck their heads out at the same moment to look for the doctor, who was running behind schedule. Katie was struck by how pretty Jessica was.

There are things that Jessica is doing to extend her life that Katie did not know. Katie is telling her what books to read and knowing Jessica just might extend Katie’s life. Jessica knows that their specific gene mutation responds well to Accutane, so Katie is looking into going on Accutane, too.

Katie called me tonight, bubbling over with excitement, sounding better than I’ve heard her sound in a year. I mean truly, sounding 98% like her old self. I was covered in goosebumps.

When Rory went anaphylactic over that cookie, and I chose to write about it, I told myself that I hoped it saved a life. Just one life and it would be worth it that our family lived through such a terrifying experience. His story went viral, and through the feedback, I knew it served as an educational piece for many people and thought, “Maybe this is the purpose. Maybe that one life is now thousands of lives.”

I’m back to thinking that it was important that Rory’s story be put into the world so that it could save one life, and that life is Katie’s. My mother mentor. The strongest woman I’ve ever known. I do not know who I would be today without her influence.

It is no coincidence that an e-magazine found me two months ago– via the story of a terrible accident that happened the day before I was supposed to fly out to see Katie– just brought my friend’s twin into her life. It is as if God tried to bring them together in the waiting room, but they did not strike up a conversation. He had them side by side with their heads out the door, but neither said, “Hey, girl, did you have an IDH1 brain tumor?”

God was like, “ARRRRGH! Fine! I will go another route. Let me whisper at Robyn. Let me get Val involved. They will make this happen, even if Robyn gets fired for being on Facebook too much.”

This is all part of a divine plan, and I can not wait to see what their friendship brings to their lives.

Katie’s health insurance is no longer paying for therapy.  You can donate to Katie’s fund here.

Jessica just found out that she lost her health insurance due changes from Obamacare and is going on Medicaid.  You can donate to Jessica’s cause here.

Katie and me in LA, September 2012.

Katie and Jessica: You Are Not Alone by The Robyn Nest

 Photo Credit: Micah Smith

The Robyn Nest headshot resized
I believe that the needs of a marriage should come before those of the children, but I’ve failed to live up to my beliefs. I did not know who I was before becoming a mother. My kids wear cloth diapers and eat organic food, for the most part. The chemical-free mattresses they sleep on were more than our mortgage payment. I’m a big believer in eating local, grass-fed happy animals. I like to buy our produce from a farm, preferably one right up the road. I don’t drink the water here. I’m worried about the world’s honeybees. I believe that homemade chicken bone broth, a shot of apple cider vinegar, and an Epsom salt bath can cure what’s ailing you. I believe in coconut oil and I believe in elderberry syrup. I believe in a higher power. I believe in writing it all down because you will never remember it later.

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