Reflections on the Beach

Nothing better said than in a photo!

The images document our wonderful family trip to Blue Mountain Beach, FL with Grandma and Grandpa from England.

First Pittsburgh Visit

Tuesday: We arrive at Pitt in early afternoon and get limo'd to the hotel, compliments of the hospital. We settle in, walk several blocks to find some dinner at a little deli and swim in the pool before going to bed. Easy day.

Wednesday: MRI and no eating after 7am. I woke Bea up to a huge breakfast at 6:30am. She ate and went back to sleep for a bit. Her MRI wasn't scheduled until 3pm and we needed to get to the hospital by 2. So, we had time to kill and hung out in the hotel. Bea played games and watched cartoons on her new Kindle Fire (thank you, donators!). We drew some, too. I watched the news. It was a pretty lazy morning.

We got the hospital via hotel shuttle. The MRI does not require sedation and they had a nice alternative - wearing special goggles and watching a selected DVD. We decided to try this and see how it went. Bea did not move until the last few minutes of her 45 minute scan. So, it seems that from here on out we won't need sedation for MRIs at this hospital and Bea can eat whatever she likes, whenever she likes.

Waiting for the MRI

A late rooftop lunch after a late MRI.

Thursday: Bea had her first vaccine treatment. We met Dr. Jackaki, the doctor overseeing the trial. She's very nice and very honest. I like that. I saw Bea's MRI from the day before and it appears that the radiation got rid of a lot of the cancer. It was a relief to see. That being said, there is a cyst enmeshed within the cancer area that is part of it all that has not been diminished much. That is an area of concern for the doctor as far as causing problems for Bea down the pike. If the vaccine causes any swelling, which it can, this cyst will behave like a sponge. This can happen at any time, not just the 48 hours post-injection. So, we need to keep watch hour by hour, day by day, until Bea is through with the trial. That could be up to 2 years.

The experience to get the vaccine was pretty much what I expected - a long day at the hospital. In order to get the shot Bea has to have blood drawn. Then that's tested and then she can get her shot. It's just to make sure that her blood count and hemoglobin (iron) is OK. Her appointment was at 9:00 and we got out of there at 3:30 on the nose, just in time to meet with our limo service to get to the airport.

Then dinner at TGI Fridays in the airport, waiting for the plane and getting home. It was a long day but well worth it.

We're Off to Pittsburgh

Bea and I are off to Pittsburgh for 3 days for her first treatment. Today is just a travel day. Bea will have an MRI tomorrow to make sure she's healthy enough for treatment. Also, it's the time we would have had a post-radiation MRI anyway so I'll finally get to see what radiation did for her. Lastly, she'll have her vaccine shot on Thursday morning.

I'm a bag of emotions today. Super nervous about getting there and finding my way around what it supposedly a large facility. I'm nervous about her MRI. It means I'll have to take another real look at Bea's cancer. I hate it but it has to be done. And, there is the possibility that they will deem Bea unfit and not treat her this time. So, there's a lot I need to brace myself for, just in case things don't go the way I want.

Beatrice is generally doing well but is not looking forward to this trip. She knows she's getting a shot. She hates shots. And, her grandparents from the UK are here and she feels like she's missing out on fun stuff by leaving for a few days. That's probably true but we'll have some fun in Pitt. It's not going to be all doctor visits. We'll swim in the hotel pool, hit the treadmill, play games and read books on her new Kindle Fire, draw and find new foods to try out while we're there.

Beatrice has been showing some weakness in her left leg for the past week. It's not just me and her dad seeing it. Her physical therapist saw yesterday and we discussed. It is causing her to lose her balance and she is falling sometimes. So, we're keeping an eye on this and will be in contact with her doctor should it progress. Hopefully, the vaccine will do some damage to the cancer and her balance will return.

Puppy Postcards!

One of my favorite design clients had a great idea to keep Bea's spirits up a few weeks back. Her name is Renee and she co-owns Bop & Rocksie (http://www.bopandrocksy.com/), a business that makes adorable accessories for your dogs and puppies. Well, she asked if Bea likes dogs. And, well, yeah, Bea is crazy about dogs.

So, Renee asked if she could send Beatrice a few puppy postcards. Well, she must have a LOT of friends she told about this. Bea has received a couple dozen puppy postcards from gals all over the country. A day has not passed when one didn't arrive. Bea loves them. A few of her absolute favorites are taped to her bedroom wall and she puts the rest in a little pink gift bag and keeps in a special place on her bookshelf. She reads them all the time and is very careful not to lose this special bag. Those of you who know Beatrice know that she can be a bit messy and loses things all the time.

The gist of this post is first to thank all of the great ladies who have corresponded with Bea. You lightened the day for all of us. Second, if you have a cute postcard that you've been waiting to use for someday or someone special, send it to Bea! If you are wanting to mail a card just email me at sweetbeafund@gmail.com and I'll get you a mailing address.

It Was a Bea-Utiful Night!

Thanks to everybody who came out at Blue Mark Studios on Saturday night.

The entertainment was phenomenal. Thank you so much Claudia Kelly, Levent and James for singing, performing and playing tunes for our enjoyment. You all were hugely inspiring. Bea is still talking about the paper hat trick (if you were there you know what that is).

The food was delicious and drinks were plentiful. I don't think anybody left there complaining, unless they found out they missed out on those wonderful chocolate mousse cups. Lewis ate two and then a huge piece of chocolate cake. Then he hit the dance floor solo without a worry in the world. The little guy was bouncing off a storm of sugar!


Lastly, thanks for making the auction a big success. All said, the auction raised over $2K and this generous support will go a long way in helping Bea and our family. Ticket sales were on par, too. So, again thank you so much!

Thank You Woodstream & Friends!

Hands down I live in the best neighborhood ever. I know that phrasing is kind of juvenile but that's how I feel so that's how it is. Our neighbors are friendly, helpful and, well, pretty cool to know.

When Bea was diagnosed a new friend and new neighbor set up a dinner calendar where folks in the neighborhood and local area would make us a meal and drop it off at our home. This went on for two months every other day without fail. Every meal was delicious and nutritious and very, very much appreciated.

All of your help really took a load off when there wasn't enough minutes in the day or I didn't have the energy to even think about food. It helped me put the weight I lost when Bea was in the hospital back where it belonged. Bea was always curious about what new meal was going to arrive so that she could taste something that mom or dad had never made. Lewis wasn't so curious as he's not a good healthy eater but he took it all in, too. Every kid is different.

In short, thank you all for your fine food and even finer care for our family. We couldn't have chosen a better place in the world to live, surrounded by such a loving community.

How Does Time Pass?

I was driving this morning and an odd thought came to mind. A lot do usually, regardless of what my life is like now or what it was like before Bea was diagnosed. I'm a pretty random thinker but somehow manage to pull it all together before I let lose with real spoken words. Usually.

Anyway, so I thought about how time felt when I was a child. My memory says that days felt like weeks comparable to now. Summer break was a blissful eternity. The days leading up to Christmas were agonizingly slow. Eating an ice cream cone took an hour. Doing homework felt like days. I was consciously consuming every second. Everything seemed important. I hadn't learned how to gloss over a beautiful day or smiling face or pass up the opportunity for a good conversation with a friend. I don't remember just trying to get through the day so that I could deal with the next one. It was all important right then. This is how I remember now and I'm assuming that's how it felt back then. This is how I'm trying to live my life now but it's all just passing so darn fast.

So, I thought about how Bea and Lewis feel time now. How many years did Lewis live when Bea was gone in the hospital? How many hours pass for Bea when she's at the doctor's office, even though the visit is less than 60 minutes? How many weeks was our visit with relatives in Charleston? How many days are in a week for them? How many hours in a day? Does time have a different pace for them than for me?

I sure hope so because I plan to get a lifetime into the next 12 months.

A Bea-Utiful Night - Bea Is Ready to Party in Pink!

But, you have to come to the event to see it. Bea has a new outfit just for the event. All I can say is that there is some pink.

A Bea-Utiful Night at Blue Mark Studios is just about here. In two days Bea, Lewis, mom and dad will be dressed up and ready for some great eats and magical illusions. I've also bought a pink floral dress as well, not my usual style but I let Bea help me pick it today. She loved it and so I thought I'd buck my usual habit of black, gray and more black and get something colorful. Lewis will probably choose something green to wear and I'm sure that dad will look dashing, as always.

The agenda is now available. Looks like we're going to have quite a night of entertainment!

If you would like tickets for the event they are $40.00 per ticket and it's appreciated if they're purchased in advance. You can buy tickets through this link: http://www.sweetbeafund.com/BeautifulNight.html
The purchase will be made via Paypal. Just print your Paypal invoice as your ticket and you're in!

Bea, Lewis, Chris and myself will be there from 7:00 on. We'll try to stay for the entire event but we'll see how the kids hold up. My guess is that they'll have no problems staying for Levent's magic show!

Here's a sneak peak at a few artworks Bea will have up for auction.