A Red Sky Success!

I hope it's better late than never to say thank you to some very supportive people.

Red Sky (www.RedSkyTapas.com) hosted a night of dining and silent auction on Thursday, February 9. Bea, Lewis, Chris, Grandma from England (Nancy) and I attended. The place was buzzing when we got there at 5. The food was delicious. The place was packed. Bea and Lewis actually lasted for a full 2 hours, which is unheard of for them at a restaurant. They usually get bored and go a bit crazy after an hour.

I'd like to especially thank Sara, Brian and their staff for being such great hosts. I'd like to thank Bex for pulling it all together and getting the word out. I'd also like to thank Taryn for photographing the event.

The money raised will send Bea and me or her dad up to Pittsburgh several times. We've also decided to buy Bea a Kindle Fire so that she can be entertained during the plane rides and long waits when we're in the hospital at Pittsburgh. I've been told that the hospital schedule does not run like clockwork and that an 11am appointment can easily turn to 2pm.

Again, thanks to you all! Enjoy some lovely photos!

A Day in the Studio - Mom and Beatrice Consider Cats

Beatrice and I have been making art in my studio quite a lot since she's come home from the hospital. Occasionally we'll work at the same time on a similar subject. Two days ago the subject was cats. The media was watercolor pencil and watercolor. The surface was paper. Bea had not used watercolor pencil before and was excited to try it out.

Here's the end results of both of our artworks. Clearly our notions about cats are very different!

You can find both for purchase at http://www.helenzigafineart.etsy.com.

A Bea-Utiful Night at Blue Mark Studios

You Are Invited to a Very Special Evening at
Blue Mark Studios to Benefit the Sweet Bea Fund

This event is open to the public and should be a good time for all! 

Date: Saturday, March 3
Time: 7-11:00 pm
Location: Blue Mark Studios
    892 Jefferson Street
    Atlanta, GA 30318
    http://www.bluemarkstudios.com/

Ticket Price: $40.00 per person via Paypal
$40.00 covers admission, entertainment, hors d'ovres and 2 drinks. 

To Purchase Tickets go to: http://www.sweetbeafund.com/BeautifulNight.html

FEATURING

• The Comedy Magic of Levent (http://www.sweetbeafund.com/BeautifulNight.html to see video of Levent performing - he's amazing and funny!)
• The vocal talents of Claudia Kelly
• Music to Make You Move & Groove with James
• Silent Auction (with a very special auction of artworks by Bea)

AUCTION ITEMS FROM THE FOLLOWING

Artwork by Beatrice • Brio Restaurant • Spa Sydell • Cutter & Buck Clothing • Park 75 (at Four Seasons Hotel) • The Atlanta Symphony • UFC • Sweet Tomatoes • Bud Light • Pike Nurseries
• Dragonfly Reiki • Agave Restaurant
• Staybridge Suites in Buckhead
• Sarah Kruger Photography • Fine Art by Helen Ziga
• Parish Kohanim Print • Frank Palombero Woodcraft
• Dragonfly Woodwrights • AND MORE

Bea and Mom's Rory Cube - Story #1

Rory Cube is a game where you roll several die with images on each side and use those icons to write a story. The game can be done solo or collaboratively.

When Bea was at Scottish Rite going through PT, OT and all the other therapies to get her strong we played the game once. We may play it again soon. In the meantime I'll share what we wrote. There is no title.

"Untitled" by Bea Tolley and Helen Ziga

Once upon a time... there was a flower.

The flower woke up in the morning and thought "What a beautiful day! I wonder what I will do today."

Then a bumblebee came. The bumblebee was hungry and happy to find a delicious flower for lunch. She had flown all the way from the castle on the other side of the kingdom.

Then a turtle came and said "I want that flower, too."

Behind the turtle sat a sad looking man. He said "I would love a beautiful flower, too. But no flower would want to be my friend. Ho hum."

Then the man walked away with his cane feeling very sad.

The flower and the turtle wanted to do something nice for the sad man. The turtle said, "I know! My uncle owns an apartment building. Let's all live there and be friends forever." Then he shouts to the sad man. "Sad man! Sad man! I have a key to a special door for you."

They all go to the apartment and live happily ever after.

The end.

Bea on Fox 5 / Upcoming Fundraisers

I'd like to thank Fox 5 for spotlighting Beatrice on their Good Day Atlanta program this morning. They did an excellent job telling our story in both a realistic and sensitive way. Have a look at:
http://www.myfoxatlanta.com/dpp/news/local_news/6-Year-Old-Battles-Rare-Form-of-Cancer-20120215-am-sd

All in all, I'm having a hard time summing up the experience. Being on the news is an odd thing and to see Beatrice and myself on screen this morning has made me very, very emotional. It's not that seeing it makes our lives any more or less real. It's just that hearing yourself repeat what you know is a sad truth can be very difficult.

But, our lives are not all sadness. We have today and I know that today will be amazing. We're going to visit with Bea's oncologist, which isn't exactly fun. Outside of that we'll play Wii, read books, play outside (it's meant to be a really nice day), draw and do whatever fun things we decide to do. There's not a lot scheduled today, for once, so we can be more fluid than usual.

The Fox 5 Spot indicated that there would be some upcoming fundraisers. Here's a list of events open to the public and that should be a lot of fun for all ages.

Zumbathon - Saturday, February 18 at Dance Stop at 1pm

Blue Mark Studio Gala - http://www.sweetbeafund.com/BeautifulNight.html. Saturday, March 3 from 7-11pm. Featuring the comedy magic of Levent, musical talents, tasty treats donated by local restaurants and a silent auction

"Bea"sghetti Dinner" at St. Catherine Episcopal Church 

Hosted by Girl Scout Troops 28260 and 28289

Saturday, March 10, 2012
5:30 PM - 8:00 PM

571 Holt Road
Marietta GA 30068

You can also purchase artwork by Beatrice or me at http://www.helenzigafineart.etsy.com.

Good Intentions

We found out that Beatrice has been accepted into a vaccine trial at Pittsburgh Children's Hospital on Wednesday. The trial will begin with an MRI on March 14 at 2pm with her first vaccine injection on March 15 in the morning. If all goes well we could head home the evening of the 15th.

This particular trial, it turns out, is a pilot. Meaning, it's Phase I. I was under the impression that it was a Phase II because I found a link to the trial that indicated it was. And, I read everything after that initial finding with blinders on. Even so, the study has been going on for 2 years and they have some good data on the side effects. I was told that the vaccine is showing good promise with the children participating in the trial.

So, I was hopeful.

And then I got an email last night. An email from a grieving mother whose daughter participated in this trial and who lost her battle this past December. A mother who I'm sure worried for 20 months like I'm worrying now that the treatments aren't going to work. A mother who I do not want to become. A mother who did everything she could for her daughter but who lost her nonetheless. A mother who contacted me, I'm sure, out of caring, but who has now called into question the decision Chris and I made about Bea's treatment. The fact a child who participated in the trial did not survive is terrible news. I grieve for that family. Truly. But having that information now is absolutely killing me. I didn't want it. I had 2 days to enjoy thinking that Bea was on her way to a cure. I had 2 days to think about her future, her 10th birthday, graduation from high school, getting her first boyfriend, all the stuff that comes down the pike for most of us with our kids. Now I don't know. And, I have to decide whether or not to share this with Chris, my husband and Bea's dad. It will make him upset. So, I'm confused. Upset. Bothered. No... more than bothered. I'm angry. And I don't want to be angry. There's no point in it.

Please, please, please... if you read do not misunderstand that I don't want any advice. That's not true. However, I need to seek it out on my terms, when I'm ready. I am not ready to hear about a child who has died from cancer. I just can't bear it. So, please, for now, if you have a story that you want to share with me about your child, wait a little while. I'm just not ready for it.

Creative Cancer

The more I learn about brain stem glioma the more I realize that my daughter has a creative cancer. This insidious disease is very clever. It adapts to treatments such as radiation and steroids. It will intermittently grow and then slow down so that MRIs can misleadingly make you think that it has become temporarily dormant. Specific areas of the tumor can grow faster than others. It gives you a remission, like the one Bea has now, that makes you believe that everything is going to be OK.

Even today, after finding that Bea has been accepted into a promising clinical trial, I can't believe the minutes of my day. It's hard to believe that Bea is really home and functioning like a normal little girl. I can't wrap my head around her robust energy, her creative thinking, her immense vocabulary, her kind consideration of other people. I don't get it. She has cancer but she's healthy. It's a terrible paradox. It's terrible because it is still so very likely that it won't be a paradox for long. It will be a complimentary truth. So, will the truth be that her cancer is gone and she's healthy or will the truth be that her cancer has come back and she's not?

This is a terrible burden to carry and one that I do not have to carry alone. I have a wonderful family and friends and community (global, not just local) who has provided support in all kinds of ways. You have all provided us with the support and distractions to make our days pretty happy overall. That's an amazing thing that I am ever so grateful for.

And, I'm also grateful that I am creative, too. I can be as creative as that damned cancer. I can outsmart it so that Bea never feels any of it. She won't know what it is, what it can do and why it's such a terrifying thing to have in her body. She will never, ever fear her cancer if I have anything to say about it. We will draw, write, walk, run, travel, sing, eat, play, invent, act and live our lives as best as we can until the cancer has nothing left to say. It won't be interesting anymore. Just blah, blah, blah, cancer.

So, her cancer can shut the f*ck up. It's not nearly as clever as it thinks it is and nobody likes it.

Radiation Is Over!... So, What Now?

Beatrice is radiant these days and has finished her last radiation treatment today with no problems.

So, with that being done... what's next? There's a lot coming up and I'm going to share the absolute plans as well as speculative plans here. I am not going to include info about clinical trials here because we don't know yet.

Our goal right now is to balance both getting Beatrice the treatment that she needs as well as making this year the best ever. We don't know if any of the treatments she could be eligible for will work or if the side effects are dangerous. So, we need to keep a level head when we make decisions about how to treat Beatice and how to approach every single day with her.

By all accounts Beatrice seems like a completely healthy little girl right now. It is very easy to become complacent and forget that the days pass quite quickly. And, that also makes it really easy to forget that she still has cancer. It's easy to forget that this cancer will start growing again. It's easy to ignore the fact that this cancer can outsmart most therapies eventually. It is unbearable to think that Beatrice would leave us with only having had a glimps of the amazing world we live in. So, we're making it amazing today and hope to do it again tomorrow.

Regularly Scheduled Activities

• Physical Therapy - every Monday and Wednesday afternoon for 50 minutes
• Piano Lessons - every Tuesday at 4 for 30 minutes
• Homebound Tutoring - once a week for 3 hours
• Enrichment Class at Kincaid - most Mondays from 11-11:50

Absolute Plans

• The Beach - a visit to L&L near Charleston, SC for 5 days of R&R at the end of February
• Fresh Beat Band - tix for April 13 - Wahoo!

Speculative Plans

• Disney Word - through Make A Wish; unfortunately, we are on the waiting list and it could be 9-12 months before this happens; but, it will be 100% paid for and supposedly very grand
• Savannah/Tybee Island - a favorite destination we hope to do in the spring
• The Atlanta Zoo - got some tix and will go within the next few weeks
• Chattanooga - a weekend visit to the aquarium, Creative Discovery Museum and Hunter Museum of Art
• The Movies - got enough tix for the family to go 2 times; waiting for the right movies for the kids to come out
• Dahlonega for the Day - a quite mountain town 1 hr north of ATL; good food and scenery
• Catch Air and Chuck E. Cheese - will go as often as possible; Bea and Lewis' two favorite places to go
• Atlanta Aquarium and the Center for Puppetry Arts - don't know when but we're going!
• High Museum of Art - I'll go solo w/Bea one day in the next few weeks while Lewis is at school; sorry to say but he won't enjoy it.

Bea's Auction Items for the Red Sky Event on February 9 - "2 Owls" and "Ladybug"

Beatrice has made a wonderful 6x4" artwork that will be included in the silent auction at Red Sky on Thursday, February 9.

It's titled "2 Owls". The media is mixed (ink, handmade paper and acrylic paint on canvas). The canvas is 1.5" deep so it can stand on its own without hanging. Or, you can hang the work.

Beatrice also made this lovely drawing of a ladybug that's been attached to canvas in a similar fashion to the "2 Owls". This piece is entitled "Ladybug". It is 6x6" in size and is 1.5" deep so it can be hung on the wall or stand on its own.

Bea Loves Dr. Greg

How can I accurately describe Bea's love of Dr. Greg? It would be hard to do so without talking about the man himself. Once you get to know Dr. Greg you'll understand why Bea adores him so.

Dr. Greg is Bea's radiation doctor. He is the person who oversees the process that is keeping our Sweet Bea alive and has brought her into an incredible remission. He has a gentle southern drawl and a hearty laugh. He is a dad, clearly. A man who has two sons who he loves and talks about with Bea. A man with four dogs as well, so you know he has a lot of energy. A man who looks for Bea every morning at 7:20 am and opens the door for her when we arrive. A man who kisses Bea on the forehead before she goes to sleep for radiation. A man who talks like Donald Duck and makes her laugh, relaxing her to the point where her blood pressure is almost always normal now. No more spikes from feeling nervous or upset. She feels like she's his special girl when she's there. She's the only one he cares about in the few moments a day that they see each other.

Beatrice truly loves Dr. Greg and, I have to say, she's not the only one.

Dr. Greg works at the Winship Cancer Center which is part of the Emory University Hospital system. Their equipment is state of the art and the facilities are very accomodating. The Winship Cancer Center has a variety of ways that you can support them. If you are considering a worthwhile place to donate or volunteer, please consider this center of healing. The donation will be going to support a worthwhile cause and the center is run by a team of amazing people.

http://winshipcancer.emory.edu/support-winship/WinshipContentPage.aspx?nd=747