Monday, January 30, 2012

A Night at Red Sky

I'd like to start by saying that my neighbors across the street are amazing people - Sara, Brian, John, Megan and the little ones Ella and Avery. Our family was so happy to know them well before Bea became sick.

Once it was clear that we needed some help they offered to help in the most generous way we could image. They own Red Sky Tapas and Bar in Marietta, on Johnson Ferry, and offered to hold a fundraising night that includes food and a silent auction. It's all being taken care of by their crew.

The event is on February 9 and starts at 4pm. Reservations are recommended. If you live in E. Cobb or anywhere nearby I suggest coming in for the food regardless. They have some seriously amazing food. Everything you order tastes good.

Also, from what I understand there are some really great things on offer for the silent auction - photo sessions, spa gift baskets and more. Oh, and, of course Bea the artist will be putting a painting up for sale. It should be an enjoyable event for all.

If you would like to come out on the fundraising night here's the info you need to make reservations:

Tuesday, January 24, 2012

The Story of the Purple Mouse

As many of you have read Beatrice has expressed a desire to become a professional artist. I got her set up on my Etsy account almost 2 weeks ago and she has been a great success.

One of my favorite drawings that she did is one titled "Purple Mouse". It's a great story of how something that you think is a disaster actually turns out to be something fantastic.

Beatrice was commissioned to draw a dog and had some trouble with her first attempt. She was very upset by the shape of the body and the ears and wanted to give up on the artwork. I saw that with a few strokes of the pen she could turn it into a mouse but I didn't want to tell her what to make. So, I suggested that maybe some whiskers and a long tail would make it look more interesting. She was not a believer but did it anyway.

Lo and behold, a purple mouse presented itself! She laughed and was quite pleased with the end result. And, she titled it "Purple Mouse".

If you would like to purchase a Purple Mouse product there are a few for sale!

Monday, January 23, 2012

Good News and Super Good News

We have gotten some good news about Beatrice in the past couple of weeks.

First, her radiation oncologist has said that Bea's recovery from her initial trauma has been incredibly good. Based on where she was a month ago vs. where she is now he said he'd put her in the 90th percentile. This is coming from a doctor who was very, very negative in the beginning of her treatment. Actually, he was just brutally honest and it was not always easy to bear. So, it is especially good news coming from someone who I know isn't telling us just what we want to hear.

Second, AND EVEN BETTER... are you ready? It's spectacular news. Bea's blood test came back from the Pittsburgh vaccine trial and she's a match! It doesn't mean that she's a guaranteed in but that was one of three criteria that she had to meet and the blood test is the one that's the most iffy. I was told that the other were based on the kind of radiation, which is typically standard, and her current physiology. That's why I started off with the first story. Her physiology is fantastic so it doesn't seem likely she'd have problems with that area. So, it's not a definite yet. We haven't heard that yet.

We went through a month of "the worst that could happen is..." and then getting that very news. It is a wonderful thing to finally get news that is the best we could have gotten.

Sunday, January 22, 2012

I Am Not Strong But I'm OK With That

What is strength anyway?

To me, this idea of strength comes from an historically heroic place. I am no hero. I'm just a mom who's taking care of her kid the best she can. Any of you would do the same.

I have such divergent feelings and emotions that it is very hard to keep track of and I really don't try. I am totally distracted and easily persuaded. At the same time I am completely focused and stubborn as hell. I can't sit still but am tired. I want to control every moment of the day but I don't want to plan for the next one. 

But, I have to plan because without thinking about the future there is no hope. And hope is something I have. Hope is what keeps me going. Hope reins in the focus, lack of focus, fatigue, manic energy and all the rest of those contradictory aspecs of my day. Hope keeps me steady.

I feel very, very steady. That steadiness keeps calm in our home. It allows Beatrice and Lewis to have joy in their day. It keeps me and Chris together, at a time when we need each other so very much.

So, screw being strong. I'll take being steady over that any day of the week.

Friday, January 20, 2012

Meet Lewis

Meet Lewis. He is Beatrice's little brother. He absolutely loves her to bits and they play all the time.

Lewis is his own little person and makes sure that we know it. He jumps constantly, especially when he's really excited about something. Those of you who know him can vouch for that. He's a bit of a mama's boy and loves to give me hugs and kisses and has a silly sense of humor. He has recently decided to start replying to "I love my Lewis" with "I love my acorn." He completely cracks up. I don't quite understand the joke but I'm glad to be the butt of it. That's just what you do for your kids.

He loves to eat pizza, pasta, pears and PB&J (the four Ps of any good diet). He hates vegetables and likes to follow me into the kitchen during snack time to make sure I'm giving him something he likes.

Lewis' favorite activity right now is playing Angry Bird. Not the iPhone game but an actual physical game where you build a wall and then catapult a bird head to knock it down. He also loves to play Wii, especially with Beatrice. Anything Wii is good but games where there is jumping is always a favorite. Or, he jumps anyway even if it's not part of the activity.

The reason I'm writing about him is because he's a pretty amazing little person and it would be so easy for him to get lost in all of the stuff our family is going through. He is one of my two little stars and his light shines just as bright as his sister's does.

Thursday, January 19, 2012


I wish I were asleep. It's 5:20 am.

I wish I could be asleep and dreaming of something really pleasant like being on vacation or something weird that I could talk with Chris about in the morning or something totally mundane like doing the laundry. Even if I had a dream I probably wouldn't remember it.

Instead, I'm awake and I'm worrying. No, that's not quite accurate. I'm terrified.

I'm terrified that when Bea's radiation is over that her cancer will come back in days. I'm terrified that we won't find a trial that's good enough or at all. I'm also worried that I'm going to crack up and not be mentally healthy enough to care for Bea or Lewis. I'm worried that I am not strong enough to handle this for my family. I'm terrified that Bea is going to see through my steady day facade and my fear will creep into her life.

I don't sleep when I worry. What happens when I don't sleep isn't pretty. I feel tired all day. My memory is gone. I am short tempered. I cry all the time. There are lengths of time throughout the day when all I do is worry.

This week has been a crying week. Nobody sees it. I cry in bed. I cry while I'm driving, as long as it's by myself. I'm crying now, while everybody is still asleep. I cry in the shower or while I brush my teeth.

I don't cry all the time though. I don't cry when I play Wii with Bea and Lewis. I don't cry when I play games with the kids. I don't cry when I'm brushing Bea's hair or helping her get ready for the day. I don't cry when I talk with Chris, most of the time. I don't cry when I'm watching TV or reading the cancer books I've bought. I don't cry when I'm making art or doing work to fundraise for Bea. I don't cry when I'm making the kids a meal. I don't cry when I feel like I'm doing something that's helping Bea.

Sunday, January 15, 2012

Beatrice Ran Today!

Well, I have an update on Bea. She ran today. I was eating breakfast in our living room and the next think I know Bea and Lewis (her 4 year old brother) were chasing each other around the couch. I watched terrified but let her roll with it. It went on for less than a minute but she didn't fall down. Whew!

Running was Bea's #1 goal when she was in in-patient rehab. She is by no means good at it yet but she's not afraid and has enough balance to do it, as long as it's at a fairly slow pace.

I'm so glad she reached her goal!

Thursday, January 12, 2012

Meet Bea

Meet Beatrice, a lively, smart, funny and adorable little girl living in Marietta, GA - just outside of Atlanta, GA.

Beatrice is six years old and has lot of friends, some from school and some pretty much her whole life. She loves to play with everybody, pretty much. Bea is happy to play indoors and out. She loves to draw, bake cookies and play with her little brother Lewis, who is four. Her favorite thing to eat is edamame. Second best is broccoli. Third best is pizza. Then sweets. Yes, seriously. No lie.

Beatrice was diagnosed with DIPG, diffuse intrinsic pontine glioma, a rare, aggressive and almost always terminal form of brain cancer. The diagnosis was made on December 17, 2011. We took her to the local ER because we thought she was dehydrated with the flu. That's how fast and sneaky the symptoms are. We had no idea she had a tumor. The situation was so bad that I was air lifted in a helicopter to a local children's hospital within 90 minutes of our initial ER visit and she had to have an emergency tube put into her brain to prevent stroke. If I'd put her to bed instead of calling the doctor, like I seriously considered, I don't know what would have happened that night.

Four weeks of hospital care and physical rehabilitation and she's still not 100%. As of today Bea can walk but not run. She can't walk up stairs by herself. Her balance is off. Her short term memory isn't 100% either, which frustrates her because she's very smart and usually loves to talk about her day. She can recall with prompting but without is difficult.

She is undergoing radiation and our hope is that all of these life skills will come back with healing and therapy.

However, this terrible disease that she has always comes back, sometimes very, very quickly. It could be weeks, months or a couple of years with just the radition.

So, we're looking into clinical trials and have found a few that are promising. The purpose of this blog is two-fold. One to tell her story from my point of view, the mom. Some stories are going to be full of heartache and aren't going to be easy to read. Others will be uplifting. That's the ups and downs of having a child with a terminal illness. I'm hoping, praying, thinking, whatever it takes... to erradicate this disease from her body. It may sound insane but I would love for someone to tell me that it's chronic, not terminal. That would be music to my ears.

The second purpose of this blog is to fundraise. I've taken an unpaid leave from my job and may have to quit. We're looking into clinical trials where there are all kinds of related and peripheral expenses. It's going to take a lot to save her and I hate to think that the reason we can't would be a lack of funds.

I will have links to various ways to purchase items or donate money in ads on the page set up within a couple of days.

In the meantime, if you happen to come across this blog and have a few bucks you want to throw our way to help us save for treatments for Bea, it'd be much appreciated. The Paypal email address is

Thanks for reading,

Bea's Mommy