It's been a year

It was a year ago today I found out I had a brain tumor. I went in for the MRI, dressed to go on to work, not thinking it was anything. Afterwards, they asked me to stop in to see my neurologist across the hall. Still didn't think anything could be wrong. Never had an MRI before, so to me, this was standard operating procedure.

The doc saw me right away. He didn't mince words. It was a mass. A lesion. A tumor. A brain tumor.

I crumbled. How was I going to tell my family? They didn't deserve this worrisome burden.

Tad wasn't with me. Again, we really thought this was going to be nothing. So I was alone, trying to make sense of this life-changing information. My neurologist handed me a box of tissues and a referral to the neurosurgeon a few blocks away. "They'll squeeze you in if you go now," the doc said.

I considered calling Tad to join me at the neurosurgeon's office, but how do you call your beloved and say, "Hey. Can you meet me across town at Dr. So and So's office? He's a neurosurgeon. Because the MRI shows I have a brain tumor."

I worried he couldn't take the news and drive there without getting panicked, lost, or worse.

So I went to the appointment alone. I sat in the neurosurgeon's office with tears streaming down my face, but trying not to look like the girl who just got bad news. There were other patients waiting that I needed to be strong for (or so I thought). I read pamphlets on brain tumors in the waiting room. It was all so surreal.

Finally, after 45 min or so of waiting, the doctor saw me. He seemed very hopeful and tried to keep me calm and positive. I was 6 months pregnant after all. He told me that Elizabeth Taylor had a brain tumor once. And hers didn't take her life.

The appointment was over. I drove myself home. And called Tad to meet me at home. I can't remember if I told him over the phone or in person. I just remember him sitting with me on our sofa. The Christmas tree was up. We sat, cried, and hugged in disbelief.

Then I had to call the rest of my family. This was going to be awful. Needless to say it was gut-wrenching. To put them through so much, on the heels of Mom's scary cancer diagnosis, during Christmas; it wasn't fair.

It's hard to believe that was a year ago.

I've been very emotional this week, leading up to the one-year mark. But today, not sure why, I have my feet under me.  I suppose it's good to reflect on hard times to see how God stays with you, no matter what. To see how far He will bring you, if you just trust. To see how He will bless you, if you just look for Him. One day at a time.

Quick update

Hi everyone! Thanks for all your continued prayers, love and good wishes. They are working.

My first round of chemo (Nov 12 - Nov 16) went fine. No nausea, fatigue or other side effects that were too bad. Praise the Lord! We are living our lives, super excited about Christmas, and really enjoying SGB and all of our blessings.

Had my blood work done last Thursday to determine if the first round of chemo impacted my white blood cell count and if we can continue with the next round. All my labs looked good, so we'll start round two this week.

Please know how much your prayers mean to me and my family. We are so grateful to you and the good Lord!

Merry Christmas and lots of love!

Sydney, 8 months, loves to Christmas shop!

 

Sydney's first Christmas tree! The next shot was of her putting the needles she pulled off in her mouth. :-(

Impeccable news

"Your MRI looks terrific." "Impeccable." "One of the best I've ever seen". -- Dr. Alfredo Voloschin

Praise the Lord! My scan was clear!

I start chemo (Temodar) next week as a measure to prevent the growth of any abnormal cells. The doc said that 95% of patients do perfectly well on Temodar. Common side effects are nausea and fatigue. But it's really a pretty tolerable chemotherapy.

I'm so thankful for all your prayers! God is so good!

Much love and gratitude,
Kim

Truly living life

Before my diagnosis, I used to pray that God would help get me through the day. As a Type A personality, I was focused on being productive, successful, and accomplishing everything on my long list of to dos. My image needed to reflect that too. It was important to me to have the right clothes and the right answers.

I don't think any human being is created for this purpose (certainly not me), so I was constantly feeling anxious, overwhelmed, and sometimes depressed. Not to say that I didn't also have a great capacity to enjoy good times. I loved (and still do) parties, outdoor music shows, good food, good drink, vacations, fashion, celebrity gossip -- and mindless magazines about all of these things. But I don't rely on them as an antidote for my daily routine.

Now, I see things differently. Thank God. I don't take my life for granted or wish days away. I actually get what a gift life is -- even when it's not easy. In that way, my brain cancer has saved my life.

Tomorrow I get the results of my latest MRI. And start chemotherapy. No matter the results, I know I will be better off than before my diagnosis. That's the beauty of truly living life. Thanks be to God.

  

Sweet kitty at 7 months

 

 

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Radiation - DONE!

Today I had the last of my radiation treatments. 30 treatments – DONE!

While I’m so glad to be done, I will miss the extraordinary staff at Emory Winship who treated me. Dr. Crocker, Greg, Tech who always asked about Sydney, Mark, Orica (aka “Exercise Angel”) – you all have left a profound mark on my head (smile), and on my heart. I’m blessed to have been cared for by you all.

Me and the fab rad tech Greg Corn.
He used to joke that if he was a girl,
his parents would've named him Candy.

 

Today I opened the last links of my blessings chain. How wonderful it was to see this artwork from my nephew Joel with the words, “U made it!”

 

To all of you who have been praying that my treatments would be gentle and that God would carry me, your prayers were answered. Thanks be to God! When giving me my completion papers today, Dr. Crocker told me that most of his patients don’t do as well as I did. Without a doubt, I know it was the prayers.

I started back at work (part-time) last week, and wow – what a warm reception I came in to! Hugs, flowers, cards, special notes, balloons, and food!  Thank you to my dear friends at EMA for making me feel so loved and supported.

Thanks to my friends at EMA, my office looks like a fall festival!

 

I love this! Thank you, Wally.

 

On Thursday we’re heading to NYC to mark something off of Mom’s bucket list: seeing Barbra Streisand in concert. I cannot wait to see Mom’s face -- alive with child-like excitement -- to see her favorite performer. We are going to have SO MUCH FUN!

Cue the Steve Winwood song, “Back In the High Life Again”.

 

 

 

A good problem to have

The italicized portion of this post I began last Thursday. The rest is from today.

Finally I can say I have more radiation treatments behind me than ahead of me. Woo hoo!

I’m back on Keppra and feeling like my old self. Thank you, God! No more night terrors. Or wondering if I need to go to the emergency room because I feel heart-attacky.

Four weeks into radiation (only 2 more to go!) and I’m feeling very well.  A little bald in the front left quadrant of my head, but thankfully my bangs + a headband help me whip up a pretty convincing comb-over. I ordered a wig, but I only plan to wear it when this comb-over starts looking pathetic. Could be any day now. J

I’m insanely overwhelmed by those who are supporting Team Kim. My biggest stress currently is keeping up with thank you notes and correspondence. I’ve done a pitiful job, actually. You probably know this if you’ve sent a gift …

… or participated in any thoughtful gesture where a response of some kind would be appropriate. I’m so sorry. My reason isn’t an excuse but just an explanation:  I’m so inadequate at expressing the depths of my love/gratitude/well wishes on paper. That’s why I don’t like giving birthday or anniversary cards. I’m intimidated. For me, it’s like trying to describe a big juicy hug from someone you love so much. I could go on for pages and never feel satisfied that I captured it.

But, we have to do a lot of things in life that intimidate us. So I’m putting on my big girl pants and diving in head first. Thank you notes, here I come!

What a good "problem" to have. I’m so incredibly blessed by all of your love, prayers and support.

I treasure my blessings chain messages. Every one. I’d like to share part of one, from a dear friend, that I’m reminded of when I feel shaken.

“There are times when, without any anger in his heart, but with designs of love toward them, God treats his children outwardly, as if he were an enemy to them. See the gardener going up to that beautiful tree. He takes out a sharp knife, feels its edge to be sure that it is keen, and then he begins pruning it here, gashing it there, and making it bleed in another place, as if he were going to cut it all to pieces. Yet all that is not because he has any anger against the tree, but, on the contrary, because he greatly values it, and wishes it to bring forth more fruit than it has ever done. Do not think that God’s sharpest knife means death to his loved ones; it means more life, and richer fuller life.” – Charles Spurgeon

 

A special shout out to my dad. Hearing of my hair loss, he shaved his head in solidarity. Thanks Dad!

 

 

Team Kim

If you are friends or acquaintances with Jamie Stephens or Casey Palascak, you know how blessed you are. I met these amazing women at the University of Alabama in 1994. They are the real deal. Generous, loyal, and *fuh-uuun*!

They have done so much for me since I met them, but nothing compares to founding Team Kim.

Jamie, Casey (pregnant with Wesley), and I (pregnant with Sydney).
January 2012 in Carmel, CA.  

Team Kim is a group they created to show support for me and my family in our journey with brain cancer. The goal is raise $10,000 toward finding a cure. There are official webpages and everything. How awesome, right? I am so humbled by their friendship, support, and acts.

To learn more about Team Kim and ABC2's (Accelerate Brain Cancer Cure) Publix marathon/half marathon in Atlanta on March 17, 2013 (which I'm somehow going to run/walk/crawl):

visit the Team Kim Facebook page: http://www.facebook.com/#!/teamkimroberts

or, go to the ABC2 events page: http://events.abc2.org/site/TR?pg=team&fr_id=1110&team_id=3670

There you can find information on how to donate, how to register for the marathon/half, and how to contact Jamie and Casey and tell them how awesome they are.






Jamie with the two preggers -- me and Casey
January 2012

Thanks so much to Casey, Jamie and all who support our family. I love you guys!



Biscuit Gallery

Ready for school!

 On the go, with her first boo boo on the noggin. :(

 

On way to Mass with bracelet from the Demings
and pew doll from the Stephens

Day 11: Side effects and Kate Gosselin hair

So today was my eleventh day of treatment, or second day of my third week. This is when the side effects will begin, the doctors say. No fatigue yet, but I'm really trying to do everything I can to not feel it if it's there. The nurse who told me to "exercise no matter what" seems to think I can minimize the fatigue if I keep moving. I don't think I've been this consistent about exercise since my college "two a days" getting ready for a spring break beach trip. (Thanks to Boni for praying that I can keep it up.)

The other main side effect is hair loss or thinning. I'm starting to see more hair coming out in the brush and more on my clothing. I'd be lying if I said it hasn't startled me. It's one thing to hear it in a list of side effects when you're in "I'm gonna beat this" mode -- and another thing to experience it. But this is just part of the journey.

I'll have to share a picture of my hair soon. The area of my head that was shaved for surgery has grown back about an inch and a half long. I am now a Kate Gosselin (hair) look alike. Not what I would choose, but I can say I have a (D-list) celebrity hairstyle.

 

 

The radiation has been fairly good to me, whereas finding an anti-seizure med that agrees with me has been our toughest challenge since my last post. I've gone from Keppra to Lamictal back to Keppra. The Lamictal was making me crazy. Not to be disrespectful to the mentally ill, but I could've had myself committed. My anxiety was off the charts in a way that made me feel like I was seconds away from something terrible happening (ie. heart attack, going off a cliff, etc.) When I closed my eyes at night, I had the worst sleep disturbances. My mind was like a movie theatre running random, sometimes disturbing images, at 10 frames a second. It was like that freaky tunnel scene in Willy Wonka.  There were too many other intolerable side effects to mention. I had to stop the Lamictal.

So today is Day 1 of returning to the Keppra. Please pray this works with minimal if any side effects. The doctor didn't seem to have answers as to why I tolerated it before (at much higher dosages) but had issues with a lower dosage recently. If this doesn't work, we go to the archives of epileptic drugs that aren't used very much anymore since Keppra and Lamictal ("more tolerable") came out.

A final note of thanks to all who have contributed your well wishes, prayers, and blessings for my love chain. I look forward to reading them each day and will forever treasure your words. My favorite message today was from one of Mom's friends: "God's Will will never take you where God's Grace will not protect you."

Much love and thanks to you all!

 

Please enjoy the Biscuit Gallery. She will be six months old a week from tomorrow!

 

 

 

 

 

Day 6: Attitude of gratitude

I have so much joy and gratitude today. I know I use the word "overwhelming" a lot, but no other word comes to mind for for how I'm experiencing God's love. It's indescribably ... fantastic!

After my treatment this morning, and with fuel from the "love link" messages, I took McGehee for a walk in the park. My radio-oncology nurse explained the importance of daily exercise to build my immunity. Rain or shine. Fatigued or nauseous. So I make it part of my weekly routine.

During today's walk, I felt such an ease with each step. Almost like I could run without exerting any extra energy. I was singing The Lumineers' "Classy Girls" and KISS' "New York Groove"outloud. A canopy of trees took on the drizzling rain. The humidity seemed to be zero. God not only carried me, he propelled me.

I can't recall a time I felt more thankful for all the blessings in my life. I feel all the prayers for me and am so lifted by them. I thank God for answering our prayers -- today and everyday.

Day 3: No more sugarless gum

Three days down; 32 (or less) to go!

The face mask I wear for treatments was especially tight today. I think I must have gained a quarter of an ounce in my forehead because there was no spare room in that thing. I asked the tech what happens when a patient gains weight through the course of their treatments. He looked at me like, "Is that your plan? Because that really makes things difficult." I reassured him that I have no plans to gain weight, but it seems a stick of sugarless gum could put you over the line from fitting to not.

Enough about me. I want to thank YOU for your love and generosity. Today I opened love notes from Becky, Hyung Mi, and The Paynes. I'm flying high on your fluffy, sparkly, rainbow-colored wings.

I read this in my Hopeful Heart book this morning and was like "Yeah!"

"Each one of us is God's special work of art. Through us, He teaches and inspires, delights and encourages, informs and uplifts all those who view our lives. God the master artist, is most concerned about expressing Himself -- His thoughts and His intentions -- through what He paints in our characters."  -- Joni Eareckson Tada

Day 2

I've already had my second radiation treatment. My treatments are at 7:45am from here on.

Today's was easy breezy. Much better than yesterday when I just didn't know what to expect. Here's a pic from yesterday, before my first treatment. My sweet husband is taking me until we're sure I can drive safely home.

Before 1st radiation treatment with sweet husband, Tad.

Today, I opened love-link messages from Mom & Dad, Maghan and Casey. Again, tears of joy!

I have the best family and friends in the world! You all are in my prayers that God blesses you as abundantly as He is blessing us. That you get back all that you are giving, and then some. That you receive His grace and peace all the days of your lives.

I love you all! Have a great day.
Kim

P.S. Sweet chicken biscuit pic.

I could feast on these arms! So much love to the square inch.

The Next Chapter Begins

Today begins a new chapter. And I'm feeling really good about it. The air is a little cooler. My coffee tastes richer. My heart feels more hopeful. And my "Love Force" of family and friends has, once again, overwhelmed me with their support.

They've given me this chain of blessings with links to open for each of my 35 days of radiation therapy. It's like the chain you made in elementary school, counting down the days before Christmas or the beginning of summer.

Chain of Blessings

In heart formation :)

I LOVE IT SO MUCH! Today's link (Day 1) had super-special messages from my husband Tad, my brother Richard and my BFF Jamie. Guys, your messages brought tears of joy! I feel so lifted and blessed. I'll be feeling your love and God's presence when I go for my first treatment at 1:30pm today.

I'm not scared or anxious really. I feel better and more focused than I have in several days. I'm having to ramp up my anti-seizure meds (not because of anything new; I was on too low of a dosage) and the side effects came on strong. "Irritable" doesn't even begin to describe my mood last week. More like "weepy outbursts in the middle of daycare drop-off" or "intense urge to throw wine glass against patio railing when gnat flies in it".

Last week I was a mess. I tell you this so you know I'm not always up. But I have to welcome the hard days to have an appreciation for the easy and fun. And to remind me that God is in control -- no matter what.

For those who are wondering what my course of treatment will be, we prayerfully decided on the standard for my case: 6-7 weeks of radiation followed by adjuvant chemotherapy five days a month for 12 months. Hopkins was the only place that encouraged more aggressive treatment. But current research doesn't exist to compel us toward that more toxic regimen.

So here goes. Day 1 of this new chapter is off to a good start.

Much love,
Kim

Sydney, 5 months
 

Super smiley
 

Simulation appt today

Hi guys!  Today at 11am is my simulation appointment at Emory where they fit the radiation equipment for my treatments. They said I could valet for free. Nice!

An interesting thing happened at our Emory consult on Tuesday. The radiation oncologist (Dr. Ian Crocker) recommended a more conservative plan of therapy: radiation only with adjuvent chemotherapy (instead of concurrent radiation + chemotherapy, then adjuvent chemo as recommended by Hopkins).

I'm having my doctors from Hopkins and Emory talk to hopefully come to consensus. But Dr. Crocker said that treatment typically begins 7-10 days after the simulation, which would put us starting around Thursday 8/23 - Monday 8/27.

I'm hoping they agree on the more conservative plan, but am prayerful that we are led to the right treatment -- not necessarily the easiest.

As always, thanks for the prayers and support! A special thanks to my now cancer-free friend Nina for the bracelet engraved with the words, "Life isn't about waiting for the storms to pass -- it's about learning to dance in the rain." I love it!

Love,
Kim

Great news, so-so news, peace and hope

Hi folks!

Great news and so-so news from last week. First the great news. A close family member had two MRIs on Monday for chronic pain. The results came back four long days and nights later and the cause of the pain appears to be manageable with physical therapy. Thank you, God! An answered prayer, once again.

I don't ever want to compromise the privacy of my family or report the things going on in their lives in a public forum, so I'll leave it at that. But we were all brought to our knees in thanksgiving with the good (not cancer) report. It was the biggest thing on my mind this week and that's why I put it in the blog.

In other great news, my 2-month post-op scan was CLEAR! I underestimated the significance of this until the doctors at Hopkins reviewed it with me on Thursday. Before I got the results I thought, "Why would there be anything there so soon after surgery?" But I learned that with the type of tumor I had, it only takes one lingering "bully" cell to activate a new growth. Therefore, we're on board with starting the recommended treatment as soon as possible: radiation + chemo for six weeks, one month "rest period", followed by chemo only for six months.

That's the so-so news. We knew there was a strong likelihood for radiation and chemo, but I didn't expect the duration to be seven/eight months. We'll get through it though. And savor each day of the journey, followed by a BIG celebration at the end of treatment.

I'll have my treatment locally at Emory, but I'm not exactly sure when it will begin. My consult is tomorrow (8/14), but my understanding is that there is a second appointment to fit the radiation equipment to my measurements before we begin. Thankfully, the chemo drug is a pill (Temodar) and is easier to tolerate than most other chemo drugs. It's the radiation, in my case, that has the most side effects. Anyone know a good place to get a wig? :-)

In other great news, Tad turned 41 on Saturday! Thanks to Becky and Thinh for babysitting, Tad and I got to enjoy a nice lingering lunch and a movie. Happy Birthday, mi amore!

One final note. I often get comments about how brave I am or inspirational my story is. I'm so glad people find inspiration in my story, but it's not because of my own strength. I'm not brave or courageous. About once a week, in fact, I have a good boo-hoo before I recenter around God and give the reigns back to Him. He's in control and that's what gives me peace and hope.

Love to you all! And a special thanks to Paul and Pia Hayner for the beautiful rosary and card.

Here's a pic of SGB singing "Happy Birthday" to Tad.

Big week ahead!

So this is a big week. Four important events coming up!

Tomorrow (8/7), Tad and I go for my 2-month post-op MRI where they will check for recurrence. I feel good about it, although there is a hint of scan-xiety. I'm sure it will be clear, but your prayers would be mucho appreciated. We don't expect to hear the results until later in the week.

Wednesday (8/8), Mom and I fly up to Baltimore. Richard will meet us at Johns Hopkins Kimmel Cancer Center on Thursday (8/9) for our two oncology consults. The first is a radiation oncology consult with Dr. Lawrence Kleinberg, and the second is a medical oncology consult with Dr. Stuart Grossman. We expect them to read my MRI scan and suggest follow-up treatments. I'm not really thinking or worrying too much about it. I figure, why rob today of its treasures worrying about what could happen tomorrow?

Back home Thursday night so we can gear up for Tad's birthday on Saturday (8/11) and my godparents' Steph and Mike Werner's marriage vow renewal.

Happy early Birthday, mi amore and Congratulations Aunt Stevie and Uncle Mike!

I leave you all with pics from this weekend. SGB's first trip to the pool.

So much love,

Kim

To my EMA family

Throughout my journey, I've been overwhelmed by the love and support of so many. This post is dedicated to my friends at EMA; the agency where I've worked for almost six years.

You guys are awesome.

I came from a smaller agency in Dallas where we were like family. I happily worked there for several years until Tad and I moved to Atlanta. When I came to EMA, I had expectations that working for a larger company would be different. There was no way it could have the same family-like " I got your back"-ness as my previous agency, I thought . Well, I was wrong. EMA is just a bigger family.

You all have been so understanding, patient, supportive, kind and thoughtful. I really couldn't ask for anything more. I remember when I first shared the news of my brain tumor at a staff meeting, people lined up to hug me. How loved that made me feel!

Thank you to my entire EMA family! And a special thanks to these people who have been beyond wonderful:

Lisa H.
Mary Field
Robin F.
Nicole R.
Kathy B.
Pete S.
Tom A.
Allison C.
Maghan C.
Marci G.
Erin S.
John N.

You all inspire me. Thank you!

My glass isn't half full. My cup runneth over!

Hello dear family & friends!

We had the best weekend celebrating Sydney's baptism. It was so special to have a full house of family gathered together. I want to soak in the memories!

Getting ready for the ceremony was "fun" (think: spit-up a go-go, multiple wardrobe changes -- both Sydney and I, running late, speeding to the church, all the family's there waiting, no A/C at the church on 95 degree day, etc.), but Sydney couldn't have been more of an angel once at the ceremony and all through the reception.

Thanks to our dear sweet families and Jamie for making the weekend so incredible. I will cherish that day always. Here's a slideshow that Jamie Stephens, my best friend and owner of Sixth Day Images, created:

http://video214.com/play/Vw0sHW8J1KmD6papj7qvmw/s/dark


There was a prayer Tad and I read at the ceremony that choked me up (think: breathless sobbing) and I now say it everyday. It pretty much captures it all. I included it at the end of this post.

In other news, we're going back to Baltimore on August 9th to meet with Dr. Stuart Grossman (neuro-oncologist) and Dr. Lawrence Kleinberg (radio-oncologist) at Hopkins to discuss follow-up treatment. UCSF's team of neuropathologists agreed with Hopkins' diagnosis and pathology. So we're off to meet with the experts on how to keep this cancer from coming back.

UCSF said they'd recommend chemotherapy (Temodar, a pill) and radiation (standard fractionalized), but that Dr. Grossman would have more to say about it. Dr. Grossman has a reputation for recommending treatment based on the individual case, not standards in therapy. So that's good. Wish that wasn't a special thing for a doctor to be known for.

I'm feeling great both physically and emotionally. Very loved. Very hopeful. For those of you praying for me to experience peace and joy, it's working. I feel blessed beyond measure. I was thinking about the "glass half full" saying and it's very true. It's all about perspective ... and prayer. I didn't realize how blessed I was/am until this stupid cancer came along.

Thank you all for your love, prayers and support. It's the air I'm breathing.

God bless you,
Kim


Parent's Prayer

With all my heart, with all my soul, with all my might
I pray for the health of this child.
I pray for her to be perfect in mind and body,
To grow steadily and sturdily
In a home filled with joy at her presence,
To be nurtured into a person who greets the world.

With all my heart, with all my soul, with all my might,
I pray for the health of this world.
I beg its leaders to temper their insanity with reason,
So that my child may live in a world that seeks longevity, not annihilation.
Let the world join in the thrill of creation,
And turn its back on the lust for destruction.
Let my child never know the pain and absurdity of warfare
Let her take part in the dances of peace.

With all my heart, with all my soul, with all my might,
I pray to God to watch  over me and my family,
I pray for the capacity to return my husband's/wife's great love for me,
I pray for the ability to love and nurture this child,
I pray to feel God's presence now and always.

Second Opinions

Hi Family & Friends!

Sorry for the long time between posts. We've been waiting for responses from doctors and we got one on Sunday.

Dr. Burger (neuropathologist at Johns Hopkins) confirmed the grade 3 diagnosis because of the presence of cells that were dividing. The official name of my tumor is a grade 3 anaplastic oligoastrocytoma.

I only know that because I got the pathology report in the mail today. There is a lot of gobbly-goop medical terminology in it that I don't understand. Who sends a medical report this critical without walking the person through it? I mean, I'm in advertising and we walk some of our clients through conference reports (notes of meetings that they were in)!

While Dr. Weingart supports our decision to get multiple opinions, he wants us meet with their nuero-oncologist and radio-oncologist to discuss possible treatments based on the grade 3 diagnosis. This was hard news to get. I don't know why, really. I trust God has me. And I'm fine now, but I was really hoping that Dr. Burger would hand us our next miracle.

That said, my cousin who works in neuropathology at UCSF (a renowned tumor center) is already working her magic to get a second opinion on my diagnosis and recommended treatment. We don't even have a first opinion on treatment from Hopkins yet. In this case, the second opinion may come before the first. (I'm so thankful for you, Gretchen!)

We don't expect the diagnosis to be different (though there's always a chance); but we're anxious to hear what the treatment recommendations will be.

In other, more beautiful news, Sydney will baptised on Saturday! We have family coming in from five states to celebrate our miracle of life. We are SO blessed!

God has been speaking to me, showing me that he has me. Here's a passage I read today from my Hopeful Heart book:

"On occasion, you will confront circumstances that trouble you to the very core of your soul. When you are afraid, trust in God. When you are worried, turn your concerns over to Him. When you are anxious, be still and listen for the quiet assurance of God's promises. And then, place your life in His hands. Trust the Shepard."

Love to you all,
Kim

Where we are

I haven't posted in a while because we've been busy enjoying life. Really enjoying it. But I kinda sorta have an update to share.

I finally got a call from Dr. Weingart on July 3rd. He hadn't called sooner because basically there is no new news. But in my 18 minute conversation with him, he did clarify a few things that made me feel better:

• He's been waiting for the chance to consult with Dr. Peter Burger on my case. Dr. Burger is Director of Neuropathology at Johns Hopkins and one of the world's best in interpreting brain tumors. The way I understand it, my slides were read by someone in Dr. Burger's department, but not him. Dr. Weingart wasn't satisfied with the reading and sent it back with questions for Dr. Burger. There was a miscommunication and the same information was sent back from the same person. So now I'm trying to track down Dr. Burger and find out where we are in the process of getting a final report.
• It's possible Dr. Burger will read the same slides differently, Dr. Weingart tells me. Pathology is a spectrum, and there is overlap between each of the grades.
• He reminded me that for now, I'm tumor-free. Sometimes I forget this honestly. If we need to take precautions so that it doesn't come back, well, I'm good with that.
• Our next scheduled touchbase with Dr. Weingart is when he receives the scans from my August 15th MRI. We hope to connect with Dr. Burger before that (I mean, come on. It's more than a month away.), but that's our next scheduled huddle session.

Thanks for your interest in my story. If I can inspire hope in the heart of just one person with my journey, this is worthwhile. I mean it. I'm a different person from this experience and I love what God is doing with me.

Thanks for your continued prayers, support, cards, and kind words. We really are so touched and lifted by them.

And now, for the best part... two recent pics of our SGB. She is delicious!

No news. Just pics.

Still no word from Dr. Weingart on recommended next steps. I emailed him on Monday and Tuesday and called his office on Thursday and Friday. Finally spoke with someone on Friday who said they'd track down an ETA on the final path report. I'm taking it as a sign from God to be patient. He's working on it.

So until we hear, here are some pics to enjoy. Thanks again for all your love and prayers. We are fed by them.

Love,
Kim

On our way to school. I promise, she does smile, but never when we have the camera out.
I think we have a Victoria Beckham on our hands

SGB's new swimsuit. Gotta get to the pool fast before she outgrows it!

Lazy Saturday morning in my favorite jammies and frog socks. 
Thanks Slutzkys and Kristin!

Jesus statue at the Basilica in Baltimore.
This is the wallpaper on my phone, which I always have with me, to remind me that He is always with me.

I can do this.

My welcome home party was last night and it was beautiful! Thank you so much to those of you who came out. A big special thanks to Tad for hosting it, to Becky & Thinh for the cake and flowers, and to Mom for babysitting Sydney. If I wasn't cheery at times, it was because I'd received my pathology results 45 minutes before.

I had a grade 3 tumor, Dr. Weingart said. This was not good news. All of the neurosurgeons and radio oncologists that had looked at my scans -- at Emory, Duke, UCSF, Peachtree Neurosurgery, and Johns Hopkins -- independently said it appeared low-grade. Grade 3 is high-grade.

Typically, folks with grade 3s are automatically given radiation and chemotherapy. But my case is a little unique. Dr. Weingart is taking my case to his tumor board on Monday to discuss it further. He was surprised my path came back as grade 3 when all indications were grade 2 (slow-growing, defined borders, etc.). He said there is some overlap in how grade 2s and grade 3s behave and mine was likely to behave as a grade 2.

We're still waiting on some information to determine next steps, but this I know for sure: I'm going to be OK. I keep hearing God say, "Kim, trust Me." I do. I can do this.

Regardless of what we hear from Pathology at Johns Hopkins in the coming week, we're getting a second opinion at UCSF thanks to my "cousin" Gretchen Werner. And a third opinion if the two are night and day.

Thanks to you all for your continued love, support and prayers! Our family is riding on the wings of hope.

Here's a pic of SGB from today. We are obsessed with her.

Goodbye Baltimore!

If it were any other situation, I'd hate to be leaving Baltimore in the morning. But I am SO ready to get back to Tad, G Dog, and Sydney who is three months old today! Happy 3 months, SGB!

I bought her this little stuffed dog in a baby boutique today. Couldn't help myself.

Had my staples removed today. It really wasn't so bad. Mom videotaped it and all you can see is me smiling at Dr. Weingart. He's my hero.

The path report wasn't back yet, but he said it was likely an astrocytoma, or blah blah blah (something with seventeen syllables). I asked which I should hope for and he said the blah blah one, but not to look it up. Just live my life and be happy. Because the survival stats are old and they are generalized to the population at large. There's no accounting for my age, health, or successful tumor removal. And IF it comes back, we'll just do the surgery again.

So there it is. Until I hear otherwise, I'm living life and being happy.

Goodbye Baltimore. See you tomorrow Tad, SGB, and G Dog!

Yesterday, today, and tomorrow

I feel great today, but yesterday was ugly. Couldn't get out of bed until around 1pm and then had to curl up on the sofa for the rest of the day. Not sure if it was that I'd taken the last of my steroids, or that I'd pushed myself too hard previous days, or all the anesthesia leaving my body, but I felt terrible.

What a difference a day makes! Today we took thank you's to my Neuro ICU nurses, Jade and Lindsey. I wished they'd have been there for me to thank in person. Being at the hospital, walking the halls, feeling strong -- I was so grateful. 


Tomorrow at 8:30am I'll get my pathology report and my staples removed. Please pray for a good path report. I don't even know what I mean by "good". Just not "bad". One that makes follow-up treatments unnecessary. One that puts this tumor in its place. One that makes Dr. Weingart smile.

I'm also anxious about getting the forty five staples removed. I must've asked Dr. Weingart's office multiple times how to prepare myself for the staple removal. "Now, do you do anesthesia? No? Okay... So people tell you it feels like a pinch, huh?" Forty five pinches? God give me the strength.

Mom and I have been recounting the days, recounting our blessings. There is no greater blessing than the love Mom has given me. She is such a spectacular mom. She will do anything for her children and it feels *so good* to be that cared for. Here's a pic taken in NYC the night before her surgery.

I'm so glad you're OK, Mom.

Life is beautiful!

This I know for sure.

To all of you who have prayed for me, I humbly, on my hands and knees, thank you. Prayers have been answered! Glory be to God.

Had to say goodbye to Tad today as he returned to Atlanta. It was hard and I miss him already but I'm glad that he'll spend his first Father's Day with his SGB and G Dog. I know he is SO excited to see our babies again. Thinking about it warms me up inside. (Here's a photo of us at the restaurant where B&O Railways used to have its headquarters.)

Mom and I are making the best of things here in Baltimore. After our seventh day here, I still stand behind my Facebook posting, "Baltimore is beautiful." We went to the Baltimore Museum of Art and I was particularly taken in by the sculpture gardens.

  

I'm feeling great. Sometimes I forget when I reach up to scratch my head that there are staples there.
I still have some ways to go before feeling "normal". Like I have a hard time articulating my thoughts succinctly. And really have to concentrate to read lengthy paragraphs versus skimming text to get the gist. But even if those things don't come back, which I'm convinced they will, I will be fine. Perfect, in fact.

Got these books for SGB at the museum. Cannot wait to read them to her!

Love and thanks to you all!

Kim