Monday, December 31, 2012

One More Request

Thanks to everybody who has been so supportive over the past 12 months. To our old and new friends and loving family who have been here through it all, present physically or not.

Beatrice benefited from the dedicated doctors and staff from so many different medical institutions. These are places where I met and saw so many children and families with their own amazing stories.

These institutions are incredibly well run and make life as smooth and easy as possible for families like us.

Where Bea Received Radiation and Lots of Loving Care and the Workplace of Dr. Greg - The Winship Cancer Center at Emory:

Provided Lots of Support to Our Family - The Brain Tumor Foundation for Children:

Where Bea Received Rehab and All Kinds of Health Support in 2012: Children's Healthcare of Atlanta:

If you or your employer plan to donate this year, please consider the places that provided the best care and experiences for Bea. It was the little extra things that made all the difference for us.

  • CHOA has musical clowns and therapy dogs that entertain the children on a daily basis. They have a music therapist who wanders the halls looking for children to sing and loan an instrument to during their stay.
  • The Winship Cancer Center has the most up-to-date radiation machinery that allowed for more targeted therapy for Bea. The machines had little radiation bounce. This was very new equipment at the time. The new machine meant no ricochet of radiation to the area of the brain that's healthy. Less bounce meant less injury to her brain. This is also where Bea met Dr. Greg, her biggest crush and a loving man who made her look forward to going to radiation.
  • The Brain Tumor Foundation for Children does so many things for children and families. Some of what they do is provide financial support for families who are struggling with their bills. They also pass along your info to other foundations, such as Super Sibs, who also provide amazing support.

Thursday, December 27, 2012

Memorial Service

Chris and I spent yesterday planning Bea's memorial service and have most of it planned out pretty firmly.

DATE: Sunday, December 30
TIME: 3:00 pm
LOCATION: St. Catherine's Episcopal Church in Marietta, GA.
     571 Holt Road - Marietta, Georgia 30068

RECEPTION AFTER SERVICE: After the service a reception will be held in the church hall offering some simple refreshment and a nice place for everybody to spend time together.

ALL ARE WELCOME, including children. If you plan to bring a child or children please note that it will be a fairly long service. Feel free to bring a snack or something quiet they can do if they have a hard time with the time.

CHILDCARE: This has still not been confirmed so I would assume that a staff member of the church has not been found to watch children during the service. Children are still welcome but they will remain with you during the service.

FLOWERS: Flowers will not be displayed in the sanctuary at St. Catherines.
We would prefer that in lieu of flowers being sent to our home or to the church that you consider donating to one of a few worthy causes on behalf of Beatrice.

Where Bea Received Radiation and Lots of Loving Care - The Winship Cancer Center at Emory:

Provided Lots of Support to Our Family - The Brain Tumor Foundation for Children:

Where Bea Received Rehab and All Kinds of Health Support in 2012: Children's Healthcare of Atlanta:

Wednesday, December 26, 2012

And Now the Hard Part

My Sweet Bea...
Daddy's Boo...
Lewis' Bee-trice...

Sweet Bea made it to Christmas Day, her favorite day of the year.

She died in the early evening last night. She was at home and I believe she was gone before the paramedics arrived, which was lightning quick. It came on so suddenly and happened so fast.

Taking care of her for the past 12 months was so incredibly easy. I am so happy for the joyous months I had with her and was able to share with so many of you.

Chris and I are beginning to prepare for a memorial. I will post details as soon as we have them.

I have just a few more words left in me, I think, and no clever way to close this post to make myself feel better. Writing today is hard. Even just yesterday morning I could look over and see Bea and breathe a sigh of relief that she's here. I'd feel hope and write something that felt really inspired. Today I don't know how to end this post other than ending the post.

Tuesday, December 18, 2012

Keeping Bea and Lewis Entertained

Santa came to visit on Sunday. He brought a beautiful fabric book of The Night Before Christmas and read it to Bea. The kind old gent brought with him a very adept photographer who worked his own special magic with Lewis, my little man who detests mugging for the camera.

Santa Finds a Book in His Sack

Santa Reads Bea The Night Before Christmas

Lewis and His Silly Pal Mickey Mouse

Bea & Her Buddy Eva the Cat

Uncle Steve from Philadelphia visited for the weekend. He spent a lot of time with both Bea and Lewis. He and I took Lewis to Lake Lanier to see the lights and also indulged Lewis with some amusement park rides and popcorn. Uncle Steve got a bit dizzy on one so mom had to do most of the riding with Lewis. Uncle Steve and Daddy also took Lewis out to do mini-golf and go-carts at Mountasia.

The weekend before brought a visit from Grandmom from Philadelphia who spent a lot of time sitting with and reading to Bea. She also went Christmas shopping with me and bought Bea a beautiful red velvet Christmas dress to wear on the big day.

Through all of this Bea has been holding steady and holding court at our house. We have had a steady stream of visitors of friends and family and are so thankful for you all. We are thankful for the company, the gifts, the food and most of all the love you bring and leave behind for Bea to keep her strong.

Saturday, December 8, 2012

Better Still

Bea is still going strong and is finally having some truly happy moments. She'll make a little noise now and again. Nothing specifically verbal but it's always when something she likes happens - like when our cat Eva hops up to nap on her. She also giggled last night while I watched Wallace & Gromit with her. Cracking Contraptions is a steady favorite and there's one particular skit about soccer that always cracks her up.

So, it's clear that she's pretty much totally lucid and follows what's going on as long as she's awake. And, that's almost all day. We do whatever we can to entertain - reading books, playing with a ball, bringing out some of her favorite toys, painting her nails, massaging her hands and feet - whatever we can think of to keep her feeling good.

When she gets particularly excited she tries very hard to sit up. If she keeps improving I think that'll happen soon. She is also moving her fingers on her left hand a bit - enough to pet the cat, jingle a bell or hold something important. She also can push a ball just a teeny tiny bit. I'm planning on doing more ball play with her today.

I'm still in a bit of disbelief that the doctor's wrote her off so quickly just 3 weeks ago. My thought is that it was a mistake but an understandable one. Bea was recovering from hydrosphalus. No doubt about that. This was the fourth time and the second time that is was really bad. She has never healed quickly from it. Her slow response to therapy has given doctor's pause in the past but she always managed to come through. It just takes her longer than most people. That's what I believe happened here. The doctors didn't take into account her past recoveries and were basing their conclusion on the common. Commonly, one would have no recovery. But, we all know that Bea is no common little girl.

Tuesday, December 4, 2012

A Whole Week at Home

Bea has been home for 8 days now and is still doing quite well, all considering. She is by no means living a normal life but it's the closest we can get so we'll take it.

We've set up a hospital bed in the living room so that she's in the mix all day. She doesn't seem to have trouble falling asleep when she's tired so noise isn't an issue. And, this is the center of our annual Christmas decorating and we want her to enjoy the season as much as possible.

It is difficult to tell what she's thinking or feeling because her facial expression does not change significantly, except when she smiles. We have found that viewing old photos of herself does make her very sad so there's no more of that.

She's on a fairly regular sleep schedule, which is good for all of us. Chris and I are taking turns sleeping in the living room. Bea needs constant monitoring as well as a dose of Tylenol every 4 hours. So, it means someone has to be in the room with her pretty much every minute of the day.

We spend most of the day caring for her physical needs, reading her books, watching videos and having occasional visitors.

So, that's what our life is like today. I don't know what it will be like tomorrow. I usually don't even go there. I have today and try as much as I can to focus on that.