You're invited to Gracie's survivor Lap- 7PM this Friday

Friday, April 30th at 7:00PM Gracie participates in her Survivors lap at the Running Brushy Middle School in Cedar Park, TX (click here for directions). She will also be leading everyone in the pledge of alliance, with the help of her older sisters, for the event.

Dancing Gracie

Yesterday Gracie had her survivor dinner for Relay for Life. She thought it was so fun even though there were mostly adults there. She had been excited for her party all day and just smiled the whole night long. The photographer there had some fun glasses and necklaces for people to wear and she let Gracie take home her favorite. Gracie is so thoughtful that she made sure she got a necklace and a cupcake for her sisters from the party.

Gracie also loves to dance and make movies. This is an example of one of her recent movies showing off her necklace and sunglasses. Enjoy.

Gracie and her new bike

The other day I was telling a friend how Gracie really needed a bike with training wheels so she could learn to ride. This friend just happened to have an old bike just Gracie's size that he was not using so told me I could take it home. The next day, I gave the bike a tune-up and we were in business. Gracie loves riding up and down our street now!

On another note, Gracie has been a bit under the weather the last three days. Today she did not want to eat anything for supper except for ice cream. :) She will have energy for spurts, like riding her bike or playing baseball for a bit and then just want to lay down for a while. I hope she gets better soon!

Pics of Gracie

Our roses are in bloom so Gracie's mom took lots of cute pictures of her with the roses. Enjoy!

These last two pictures are of Gracie right after supper tonight.  We had all finished except Gracie (she eats like a teenage boy and was on her 4th or 5th helping) and I came back to see what kind of mess she was making as I thought she was playing with the food.  I asked her what she was doing (in a somewhat stern voice) and she quickly put a lid on the tupperware container and showed me the lunch she was making for me.  She is a real sweetheart and so happy to help anyone.  I am not sure that you would want someone with that kind of dirty face and hands serving you lunch, but from Gracie I will take it everyday.

Relay for Life 2010

We are once again participating in Relay for Life to raise money and awareness for cancer research.  The following link is to Gracie's Relay for Life website where you can join our team (Go Away Cancer), make a donation or find out more about helping the American Cancer Society end cancer.

http://main.acsevents.org/goto/Gracie

We do not want anyone to feel obligated to donate to the American Cancer Society through this relay.  We know that many of you give generously to other wonderful causes and also to helping family and friends.  In fact, many of you have already immensely blessed our family.  But, for those of you who would be interested in supporting us in this endeavor we would very much appreciate donations of any amount. 

For those of you in the Austin area, we would love to have you join our team and participate in Relay for Life by raising money and relaying with us.  More information about joining our team can be found at the "Go Away Cancer" team website and clicking on the "Join our Team" button.

http://main.acsevents.org/goto/GoAwayCancer

If you cannot join our team, we would love to see you on April 30th at 7:00PM as Gracie participates in her Survivors lap at the Running Brushy Middle School in Cedar Park, TX (click here for directions). Gracie and many other cancer survivors will kick off the Cedar Park Relay for Life by walking the track at 7:00PM.  It sounds like it will be a great event and a fun time for everyone!

Gracie's Easter

I guess this first picture is only about Easter because it happened the week after Easter. The kids have enjoyed playing in the backyard quite a bit over the last week as the weather has been so nice. One of their favorite games is finding snails. We have a million of them in the yard and would like to get rid of them. Anyway, the kids look all over for them, including under rocks and paving stones. Gracie's older sister lifted up a large paving stone and found tons of snails. Gracie was excited to see and stuck her head down under the stone, close to the ground. Just then, her sister dropped the stone. Gracie got a pretty good shiner around her real eye. It was a good reminder of why Gracie wears glasses all the time!!

Here is a picture of a Little Einstein doll that Gracie received in her Easter basket on Saturday (the Easter bunny comes the Saturday before Easter in our home).

We enjoyed a wonderful Easter weekend last week. It is nice to pause and reflect on the Savior's life and purpose. We remember the miracle of His life and resurrection as well as the many miracles that He gives to us each day.

March 13th Make-A-Wish Art Party

Gracie was invited to a Make A Wish art party where she got to paint some pictures to display at the Make A Wish gala fundraising supper. After the gala is over they may auction off her art. She had so much fun there and talks about it regularly still. The first picture is at the bottom and the last is at the top. The bottom picture shows her "practice" run. She put so much time in that one as it was her first, even though it was on paper and the others were on canvas. They were supposed to draw a picture representing the wish they had been given. Gracie drew herself as a princess (which she is). She loved the pizza and brownies that they had for her too and was so excited to bring her sisters each home a brownie. What a sweet little darling.

Giant Papillary Conjunctivitis

Gracie went for EUA #16 on Friday. Her left (real) eye looks great! No new tumors, no laser treatments required. This is the first time that that eye has not had laser treatments done during an EUA so we're pretty excited about that. Her right eye socket however has giant papillary conjunctivitis. It's an inflammation and pustules on the mucous in her eye socket. It's nothing cancerous or anything, it's just annoying. Usually it's associated with contact lens use and is often called contact lens induced papillary conjunctivitis (or something else with the same idea). It can be caused by protein buildup on the contact that irritates the eye, or a reaction to the solution, or a rough edge on the contact... you get the idea. Well we've noticed the past couple of times Gracie has had her eye cleaned it develops large amounts of goop after. We're talking copious amounts. So much that her prosthesis popped out 10 times in 48 hours due to the drainage around it. So if the eye is dirty it seems fine, after being cleaned it causes all sorts of problems. We're now wondering if there is a solution that is used to clean the eye that perhaps Gracie is reacting to. It doesn't seem that this would be a common problem (can't find much of anything about it in my searches or emails to my RB list serv) if it's what is happening but really it's the only thing we can think of. I'll be getting in touch with the ocularist tomorrow to see what he thinks. The ointment we've been given is definitely helping to resolve the goop issue, but really we'd like to prevent it from happening in the first place. But other than that inconvenience we're thrilled to report that Gracie is doing wonderfully well.

Stephanie

Good News for Post 200

This is a little late coming, but on Christmas Eve we got a phone call from our geneticist in Houston. Yep, thanks to cell phones she was even able to find us on vacation in Canada. It turns out that our babies genetic tests came back and she wanted us to receive the news asap. He is officially negative for Gracie's RB1 mutation! That means no more EUA's are required for him. It's just Gracie, and now that she's on the 3 month plan it feels like we have a really nice long stretch in between trips to Houston. Such a nice change after going at least every 4 weeks for over a year. Hooray for healthy kids!

Stephanie

EUA#15

EUA #15 means that my baby girl has gone under general anesthesia almost 20 times when you include MRIs and surgeries. Although for one MRI she did just have conscious sedation but I'm not including that one in my tally. It's quite a lot considering she's only 4. All went well during the exam. Dr G is officially done lasering the tumors in the remaining eye. Lasering increases her risk for vision threatening conditions like detached retina and glaucoma so he doesn't want to do it any more than necessary but it is still the least risky treatment available. She also doesn't have to go back for 3 months! That makes 3 EUA's in a row where our frequency of visits has been decreased. We feel so free! This thing is really truly behind us, at least as much as it ever will be. The genetic nature of this cancer makes it so we'll have to be ever vigilant in screening her. It's a diagnosis that lasts a lifetime. She is such a little wonder though. She never ceases to amaze me with how positive she is. I can learn so much from her.

Gracie's little brother also had his EUA done on the same day that she did. As he was only 5 weeks old this was his first time under general anesthesia. I'd been nervous about that for a long long time as we knew it would be required if we had any other children. Since he's so small and has reflux they had to intubate him for his exam. He woke up with a very sore throat, but other than that he did just fine with the anesthesia. While he was under they drew his blood for his genetic tests. He's due for another EUA in 2 months unless we receive genetic clearance on him before them. If his RB1 gene is negative for Gracie's mutation then there is no need to do any further EUAs. Here's hoping Retinoblastoma Solutions (the lab in Toronto) gets that test done FAST!