Too Cute

Gracie LOVES to swim, but for a month after her enucleation she wasn't allowed to swim. And then she was only able to swim with goggles on to a. protect her left eye and b. help prevent her from losing the conformer and soon her prosthetic in the water (or at least catch it if it does come out). We got her some oversized goggles hoping that they'd be more comfortable around the prosthetic. And hey, they're pink. What's not to love, especially when you're 3. We took her swimming the same day she got the goggles and she had a blast. It's good to be able to take the whole family swimming again. We couldn't get away from the cheesy grin in the photo shoot!

Eleventh (11th) EUA

Here are a couple pictures of Gracie enjoying her first meal in over 24 hours. She seems to love pancakes and strawberries after anesthesia!

Yesterday, we took a trip to Houston again for Gracie's first post-enucleation EUA. Dr. G said that things around the right eye (the eye that was removed) looked good. There was still some swelling but nothing abnormal. The left eye looked the same as last time (good news). He used the laser on one tumor that is not obviously dead yet. It has not shown any growth over the past few months so we suspect that the tumor is no longer active but will continue to laser it for a few months to make sure no active cells remain. There was no new growth seen.

Gracie was really good throughout the whole day. She had not eaten since Thursday afternoon so she must have been hungry but she never said anything. The procedure was suppose to start at 1:30PM but there were lots of delays earlier in the day so we did not get in until after 3:30PM. It made for a long day. We did not get home until near 10PM.

Things are going really well and Gracie is her happy little self. Dr. G said that we can get Gracie's prosthesis in 2-3 weeks. We are excited to have that happen. Gracie does not seem to mind not having it though. We had not let her go swimming for a few weeks following her surgery. On Thursday we picked up some goggles to protect her eyes and went swimming with some friends. Gracie loved swimming! Just before swimming, she was playing on the park with a girl and the girl asked Gracie what happened to her eye. Gracie said, "It got all red and Dr. Gumballs took it out." She paused a second and then said, "The boy cut it out." Stephanie overheard and thought it was pretty funny. The girl seemed to accept her explanation and they continued to play together for a while.

What her eye looks like

Now that we've got the stitch out and her eye is used to opening up again we took a couple of pictures to show you what it looks like. The eye looks like it's bulging, but that's just the clear plastic conformer that you're looking at. I must admit I'd panicked a bit myself when I saw it as any pictures I'd seen of conformers before were white. And the clear one just makes it look like the mucous membrane is really bulging. I worried that the conformer was lost and that the eye was inflamed. A quick call to Dr. G. remedied that little crisis though.

Some of you are going to be really sad looking at these pictures, but don't be. I sat Gracie up at the mirror and we looked at her eye together and discussed it. Once again we talked about why her eye needed to be removed. She knows her eye was sick and that if we didn't remove it then her entire body would get very very sick. She knows it, and she's perfectly fine with it. It doesn't make her sad at all. She doesn't think it looks scary. While we were discussing it I told her that her eye looks really neat. She agrees. Come on, everyone has two eyes, it takes someone special to have just one! She's even got two cousins that now think having a fake eye would be the coolest thing ever. She just entirely trusts us (James and I) and knows we wouldn't do anything to hurt her. Watching her deal with this reminds me of why the Saviour says we need to be as a little child. She has 100% faith in James and I and in our decisions regarding her. Even when she's been in pain she always tells James and I how much she loves us and never holds anything we've put her through against us. It's all been for her own good and we've done it out of nothing but love for our little girl. I've learned so much in the past year from watching her and our other children. Perhaps someday I'll have to make a separate blog just for sharing those lessons. But that will have to wait for another day.

Thank you for your love, support and prayers. If you're looking for something to pray for in regards to Gracie, pray that she starts accepting her eye ointment more easily. Right now it's a fight every morning and every night. But she needs to have this ointment for a long time still. It would make it much easier on herself if she'd just relax and let us do it. It doesn't hurt. It should be rather soothing. But she's had so much done to her eyes in the past year that she doesn't like to let anyone near them. It should make getting her prosthesis fitted fun, as they have to actually take a mold of the eye socket. Hopefully she'll soon realize that it doesn't hurt and it really isn't a big deal.

Stephanie

Stitch is out

Gracie got her stitch out today. She did not like having it done. It did not hurt at all but she still does not like people touching her eye. This picture is taken with Dr. O shortly after taking the stitch out. Gracie enjoyed playing in the office and speaking with everyone there but I had to hold her down while the stitch was snipped. The implant looks great and we look forward to seeing the ocularist in the near future (3-5 weeks from now) to get her a prosthesis. Gracie got to hold a couple of different prosthesis from Dr. O's past patients. She was pretty excited about it. Gracie told Dr. O that Dr Gumballs had taken her eye out and now she (Dr. O) would put one back in!

Celebration of Life

This weekend our friends threw Gracie a huge celebration to honour her as a cancer SURVIVOR!!

She wasn't able to attend the ACS Relay for Life, as it was the same day as her enucleation, so they created their own event and called it her Survivor Celebration Run. It was absolutely amazing. People donated food, and time. They had a live band. Around 200 people showed up to show Gracie their love and support. Thank you so much Tauni for organizing this. It was so much bigger and better than anything I would have done. You surpassed anything I could have hoped for. I know you had people helping you, but I'm not sure who they all were, so I can't mention them by name or send them cards, but I hope you know how much our family appreciated this. Thank you also to all of you who showed up to cheer our precious little girl on, I can't express how much it means to us. We feel so blessed to have such wonderful friends. The support you've given us has really buoyed us up over the last year. We've needed each and every one of you and all the prayers you've offered on our behalf. Thank you.

Sorry the words to the slideshow are so small, it looks really good in full screen mode (which is how it was created). I wasn't factoring in how small it needed to be on a blog. Hope you can read it none the less.

Stephanie

We are home

We just got home and I thought I would put up a few pictures.  They show the fun time we had with Gracie on Monday and then a couple pictures from today- without her huge eye bandage!

She is doing so well.  We came home to a house decorated for a party.  Gracie's sisters and grandma had got a whole bunch of balloons and flowers.  It was pretty cool.  Her oldest sister was at school but her sister two years older than her was so excited to see her.  Pretty soon things were back to normal and I heard them arguing a bit.  Gracie started to cry and her sister said, "Girls with fake eyes are not allowed to cry!"

I laughed to myself and thought that, while it would be convenient at times, there are no such rules for Gracie.  Her sisters will be so protective of Gracie but they will probably be a little mean sometimes too.  

This is Gracie at the butterfly gardens Monday morning.  She loved watching the butterflies.  She was not to keen on them landing on her but loved to walk through the gardens and see them.
This is at the entrance to the gardens.  It is a huge caterpillar.
This is at the museum overlooking the dinosaur exhibit.  Gracie liked the minerals and rocks part of the museum best (there were necklaces and tiaras there).
Gracie right after she came in from playing basketball with me on Monday afternoon
She is so silly!
She still has her smile.
This is right after the bandage was removed.  The right eye is stitches shut for now.  Taking off the bandage was the worst part for Gracie.  She hates taking stickers, bandages or anything off her skin.  It really was not a difficult process (except holding her still for 15 seconds) and probably caused little pain but she was traumatized for a few minutes afterwards.
This is Gracie at home after running around with her sisters and seeing her grandma again!

We are so grateful to be home and thankful for such good family.  Stephanie's mom graciously stayed with the other kids and watched them (and our home and the dog).  Everyone had a fun time with her but we know we took her away from her husband, her home and her job for another week.  It is so so good of her to take care of us so well!  There were many others that offered to help too.  We are grateful for the many who really do love Gracie!

You try and slow her down

Gracie has been bouncing around today, literally.

We expect to leave Houston tomorrow morning after our 8AM appointment. Gracie gets her big bandage off tomorrow!

72 hours cancer free and counting!

I had thought (and said to many) that we would do whatever Gracie wanted on Monday (today) and Tuesday after her surgery. We would have fun and do whatever she felt like doing. I guess I underestimated her because I cannot keep up with her. She is wanting to run and play and shop and eat and ...
We had a doctors appointment this morning at 9AM. I am not really sure you can call it a doctors appointment. Dr. G came into the waiting area just before 9AM where we were the only ones. He watched Gracie play for a bit and talked to us. He looked at the bandage on her eye and then told us that everything looked good. He would plan to take the patch off on Wednesday morning at 8AM and then we were free to go home (barring unforeseen circumstances). It was quick and we were happy to hear that things were on track.
We then walked a mile or so to the Houston Museum of Natural History. It was a nice little walk. They had a special butterfly museum that Gracie was excited to see. We had a good time there for an hour before MacDonalds for lunch. Then we saw a movie in the IMAX theatre at noon. Gracie seemed to enjoy the movie and we did too (it was Night at the Museum 2). Then we went through the main exhibits for a while before calling the hotel shuttle and coming home. We got to the hotel and Gracie ate a lot of Lucky Charms again. Then she wanted to play some computer games with me before asking to go for a walk. So we went to the front desk to see if they had any basketballs or soccer balls to play with. We got a basketball and played for a while but it was pretty hot. Gracie had a fun time throwing the ball into the volleyball net or kicking the ball around the court. Now Stephanie and I are trying to relax but Gracie is running around and playing a game with her pretend Dinosaur friend. It does not seem like losing an eye is slowing her down much yet. She is our little hero and we are truly excited to see her feeling so well.
Thanks, as always, for your support and prayers. It has meant so much to us to get the comments, e-mails, notes, phone calls, etc that we have received!

Some pictures of Gracie over the past few days

Gracie is showing off her picture of "Princess momma" in the waiting area.
OK, the smile looks a little forced but she is one happy little girl!
Gracie always enjoys her time in the waiting area with all of the toys.
In the morning Gracie was hungry for pancakes and she ate a lot of them. She did not want to open her eye because it hurt. She enjoyed eating though and listening to Little Einsteins on TV.
This is actually the first picture of Gracie post surgery. Once she woke up she quickly inhaled two juice boxes. That is not entirely surprising as she had not eaten for 20 hours!
Once we got to the hospital room Gracie crashed. She was exhausted and just wanted to keep her eye shut.
Once at our hotel (4PM on Saturday), we all went shopping. Gracie loved getting out and even had to open her eyes to pick her favorite type of candies! She realized that it did not hurt so bad. Gracie was tired after our little excursion. She napped a little bit before having this lovely meal of sweat rolls, chocolate cookies, raspberries and orange juice!
She had a silly smile for the camera this (Sunday) morning. She is excited to go to church.

An update from the day after

Well we just spoke with Dr. G. He said that we are ready to go, so we are just waiting for paper work. Gracie will not open her eye. It hurts her to open it so she is mostly just lying around with her eyes closed. Per Dr. G, this is normal for children following an enucleation. She has eaten quite a bit. Whenever we ask how she is doing she says, "I hurt a little bit." She is enjoying cuddling with her mom and has no desire to have me near her. I am the one that gets her breakfast and drinks. I am glad I have a purpose at least.
We are going to head to a hotel for the rest of the day and tonight. I am sure Stephanie and I will sleep better. We will see what Gracie wants to do the rest of the time we are in Houston. We will see Dr. G again on Monday morning to make sure things are still going smoothly.
Dr. G told us today (and yesterday) that the pathologist had taken a preliminary look at Gracie's eye. They said that the seeds looked active, meaning that the floating tumors in her right eye were growing. There were so many of them that it is unlikely they could have been controlled. We are grateful that those tumors are no longer a concern and excited to move forward with Gracie's cancer-free life!