Living Your Story

Dr. Weingart at Johns Hopkins confirmed my surgery for June 11^th. As I booked my plane ticket for Baltimore yesterday, the reality of this situation hit me. I would be on an operating table in 14 days having major brain surgery.

Just 12 hours prior, our house had been full with family and the sounds of music, children and laughter. We were celebrating Memorial Day and just being together. But now things were quiet, except for the songs from an inspirational playlist my brother gave to me the night before. I listened to it over and over, and cried and cried. I know I’m going to be OK, but it felt good to cry. It felt good listening to each song and experiencing a burgeoning fullness in my heart that left no room in my chest for air. I was and continue to be overwhelmed by the acts of love and support that have been outpouring for me.

My surgery date has great significance. It’s my godson Joel’s 1-year baptism “birthday”. This time last year we were preparing for a beautiful celebration of life, family and God’s love. This year will be no different.

I’ll be in Baltimore Saturday June 9^th through Wednesday June 20^th. My family will be able to see me 30 min after surgery and my hospital stay will be 3-5 days. I’m staying in Baltimore longer because I choose to have Dr. Weingart remove my staples, which happens eight days after surgery.

So many of you have asked how you can help. It’s simple: please pray for my family. Pray that they are relieved from any worry or other burden that comes at this time. Please pray that June 11^th will always be a day that we celebrate together.

As always, thanks for your support and prayers!
Kim

Here is a pic of my subway art birthday gift from Becky (love it!), and Mom & SGB from our Memorial Day celebration.

We found our surgeon!

Our trip to Johns Hopkins on Tuesday was worthwhile! We'd read great things about the institution (#1 in Neurosurgery according to U.S. News) and heard great things about their Professor of Neurosurgery and Oncology, Dr. Jon Weingart. But meeting him was the real standout experience.

The docs we'd consulted with at Duke and Emory are highly capable and ridiculously experienced. But Weingart had that something special that told us, "This is our guy." He met and/or exceeded all of our criteria, and then some.

You may have read in my last post that we've been prepared for the "high risk" of temporary partial paralysis as a surgery after-effect. Weingart's methodology would greatly reduce that risk. What a relief to know that, if all goes well, I'll be able to hold my Sydney Greene Bean in whichever arm I choose!

Moments after our appointment at Johns Hopkins, we celebrated. We had an hour until my brother's return to Manhattan, and Mom & my flight back to Atlanta. We made every second of that hour count -- with yummy wine, tons of laughter, and surgery date selection.

Pending Dr. Weingart's availability, our goal is to schedule surgery for Monday morning, June 11th. We're just waiting to hear back from his office, but hopeful that's a real date.

We're so thankful to Tad's parents for making themselves available to come to Atlanta from Hot Springs, AR to care for Sydney and G Dog during my surgery and recovery in Baltimore.

I'm incredibly thankful to my family for dropping everything -- whenever necessary -- to be at my doctor's appointments or by my side. Collectively and individually they have missed several days of work and left their own responsiblities and interests behind to ensure that I get the best possible care and outcomes. I love you more than anything.

Hope and Joy! And a very Happy Birthday to my dear sister, Becky!
Kim

P.S. Recent pic of SGB.

Never thought I'd be blogging...

... especially about my own brain tumor. Even coming up with a title for this blog was daunting. But here we are. So for those who don't already know, here's how my diagnosis began:


June 2011: I started having episodes where I felt an overwhelming need to communicate, but there was no content to express. My family doctor referred me to a therapist for anxiety. I dismissed her advice knowing it wasn't anxiety, but hoped they'd just go away.

July 2011: Found out we were pregnant with our Sydney Greene, due in March 2012.

November 2011: The episodes increased in frequency from one a month to several a day. I didn't tell people about them because they were so hard to explain. And with Mom's breast cancer diagnosis in October, all of my attention was on her.

It was while we were in New York for Mom's lumpectomy that I had an episode in the hospital gift shop. My brother Richard asked me which balloons we should get for Mom, but I couldn't respond. The words just weren't there. Richard didn't notice anything unusual as these episodes were undetectable by others. However at dinner a few nights later, I told my mom and brother about what was going on. They encouraged me to see a neurologist ASAP.

December 5, 2011: Saw neurologist Dr. James Keily. He thought I was having seizures and scheduled an EEG and MRI (without contrast since I was prego). Told me I couldn't drive until I was 6 months "seizure-free" and prescribed an anti-seizure drug. I was devastated. No driving for six months?!? These were not seizures, I thought. I continued to drive and didn't fill the prescription. I was waiting to see what the EEG and MRI would tell us.

December 13, 2011: Had the EEG and MRI in the morning, expecting to return to work after the scans. Instead the radiologist sent me directly to Dr. Keily's office. The EEG was fine, but the MRI revealed a 4+ cm mass on my frontal left lobe. It wasn't clear what type of mass it was, but it appeared to be slow-growing. The location of the tumor explained my trouble with speech. But we'd have to wait to get more details in an MRI with contrast after the baby was born. Thankfully, the doctor didn't feel it was emergent to remove before the baby was born.

So for the next three months, we prayed like crazy that Sydney would be born healthy and without any effects from my medication, seizures, additional stress, etc.

March 19, 2012: Prayers answered! Sydney Greene Roberts was born healthy and without complications. God is so good!

April 18, 2012: Had MRI with contrast. Doctors at Peachtree Neurosurgery don't know for sure, but believe it is a low-grade glioma. They recommend surgery over a biopsy.

My family pours itself into helping me get surgery consults with three of the top neurosurgeons on the East Coast, while I avoid as much internet reading on my situation as I can. I'm a worrier by nature and this is scary, scary stuff. Praying is a much better use of my time than internet "dumpster diving" for glioma prognosis.

May 11, 2012: My first surgery consult is at Duke with Dr. Allan Friedman. He's done hundreds of glioma resections and gave me a lot of confidence that he'd do a superior job with my surgery. He mentioned some scary risks (temporary partial paralysis) but we left Duke with him at the top of the list.

May 15, 2012: My second surgery consult was at Emory with Dr. Jeffery Olson. He's also very capable and had many of the same responses to our questions as Friedman. Friedman has a slight edge at this point, however, just based on gut feeling.

We'll have our third (and hopefully final) consult in Baltimore on Tuesday May 22nd with Dr. Jon Weingart at Johns Hopkins. Our goal is to make a decision on the surgeon next week and schedule surgery as soon as possible (likely early to mid-June).

The recovery time for brain surgery like mine is approximately six weeks, so if our prayers are answered as we'd like for them to be, I'll be back at work in early August.

Thanks so much to my amazing family and friends for supporting me EVERY step of this journey! The prayers, cards, gifts, emails, calls, texts, and visits are appreciated beyond words. Please just forgive my delay in responses, thank you notes, etc as I'm easily overwhelmed with the new demands of motherhood.

I'll try to keep you all updated as long as I can, before handing the keyboard over to Tad for any post-op updates.

Love to you all,
Kim

P.S. Here's a recent pic of SGR.