Another EUA...or two.

I made this post several months ago for our family blog and kept meaning to post it on here. Well, now that James has posted on this blog about Gracie's 4 year diagnosis day anniversary it inspired me to paste this post here too.

In January (2012) Gracie went for another EUA, it was also time for her new baby brother's EUA as well as time to draw his blood so they could do his genetic testing. Due to a last minute meeting James had, I had to take the kids by myself to Houston. I was quite concerned about taking care of both of the kids by myself in the recovery room but things actually worked out quite well. We made it back to Austin in record time, which I guess can be expected when you leave at 4am, but both kids got two thumbs up with their retinas and the baby's tests did come back negative for Gracie's RB1 mutation. Thankfully, she's one of a kind in that regard. 

 Here's a very hungry baby in pre-op. He was required to go without food for 4 hours prior to anesthesia. They have no idea how big of a sacrifice this was for our little porker. He'd never done that before and I don't think he's ever done it since. He was two months old for all of this.

 In the recovery room. He's still asleep, hence the oxygen.

 We're pretty used to seeing our little Gracie like this. Thankfully she comes out of anesthesia very well. We've lost count of how many times she's been under it. I think it's something like 25 when you consider EUA's, MRI's and surgeries. 

Sleepily sipping her apple juice that she drinks after every EUA. 

He may look really ticked off, and he may well be, but thankfully he stayed quiet for long enough for me to help Gracie as she came out of anesthesia. He was awfully tired in this picture still, although thankfully his tummy was now full as I nursed him as soon as he was alert enough to eat. That made him a much happier little man.

Of course on our way out of town we stopped by IHOP. You simply can't have an EUA without IHOP after:) 

Diagnosis Day (four years out)

I will post a picture or two later, but just wanted to mention that today is the day we celebrate Gracie's diagnosis day.  We had blizzards on the way home from an amazing vacation with family at the lake.  Gracie loved to be on the water.  She loved being on the tube or watersled behind the boat, creating sandcastles, playing in the water, and all the other fun things you do at the lake.  It is amazing to watch our little girl grow so big.  She was only two years old when she was diagnosed and now she will be starting grade one.
In the last few months we have moved away from Texas and to a new home.  We miss our good friends and the people that loved and supported us during Gracie's treatment.  We saw the very best of many, many people.  Now that we are among new friends that, for the most part, know nothing of Gracie's experiences it is interesting to watch her interact with them and see her share things in her own way.  Even some of our good friends know nothing of Gracie's prosthetic.  I feel like it is Gracie's choice to share what she wants with others.  She is not shy about it though.  If the topic of eyes comes up she will proudly speak about her fake eye and the amazing things you can do with it.  She thinks it is funny to touch her eye for people to demonstrate that it is fake and doesn't hurt to poke it.  I heard her and her brother in the back seat of the car today playing a game of "Poke your eye." I think they were trying to see who could poke the hardest before stopping.  Stephanie and I were not encouraging it but I thought it rather funny and Gracie certainly had the upper hand.

Well, we have been blessed beyond measure.  We thank all of you that have supported Gracie and our family.  Today we celebrate the freedom that Gracie's diagnosis gave us, as it afforded us the opportunity to see our little girl loving life cancer free.

Gracie Pics

Gracie has been doing marvelously. She is always her cheerful self and has loved participating in swim team throughout the first half of the summer. Just the other day, Stephanie took pictures of the kids at a nearby park. These are a few pictures from that photo shoot.

I am grateful for Gracie's health and happiness. She is such a joy and blessing in our lives. I have been blessed by the prayers and faith of many friends and family. I was reminded of all the miracles we have seen as I watched Gracie tell a friend of mine how she needs to protect her real eye with glasses because if she had two fake eyes she would not be able to see. There was no sadness or worry in her voice, she was smiling the whole time and just wanted to explain the facts. This friend has a 15 month old son, Chase, that was recently diagnosed with severe Hypertrophic Obstructive Cardiomyopathy. It is a disease of the heart that is not common in children but can cause sudden cardiac death. They are going through many of the same emotions that we did in our journey with retinoblastoma. I admire their faith and positive outlook through their current struggle. From experience I know that even though you try to have hope and exercise faith, some days are still hard when you don't know what the future holds for your child. My family and I are praying for Chase and his family and hoping for the very best.

You can read more about Chase and his condition here- http://littlechasesbigheart.blogspot.com/

Rolling down the Highway

Gracie's last EUA was on May 20, 2011. I took her myself as Stephanie was not feeling well. All is well and she enjoyed her time seeing all her friends at the Children's Hospital. On the way back, Gracie was rather quiet in the backseat. When I plugged my phone into the computer I found out why. I have made a quick movie out of Gracie's picture-taking. I deleted about 40 pictures even before deciding to make this movie. I didn't include the 3 and a half minute video she made in the car either as I was getting sick watching the world spin around and around. Gracie is so crazy. Enjoy!

Gracie's gingerbread man

We made gingerbread houses over the Christmas break. Gracie was insistent that she make a gingerbread girl by herself. So she made this girl with a green fake eye. I thought it was pretty funny. (Try to ignore that Gracie's hair was never done the day we took the pictures. It was Christmas break you know.)

Trip to Bethlehem

Yesterday, we went to Burnet, TX where they have a really elaborate nativity display. It is really about a full city block that models what Bethlehem may have looked like 2000+ years ago. They have Roman soldiers, blacksmith shops, live donkey and camels, little homes, inns, beggars, merchants, etc. This year we went with our friends, Noah and Elizabeth. We had a great time together despite having to wait 1.5 hours to get in to see the village. It was a good thing that Gracie wore her rain coat as it protected her clothes from the hot chocolate she spilt down her front.

Today Gracie was playing hide-and-seek with her sisters and was counting with only one eye covered. Her sisters were going to get after her for cheating but then realized she couldn't see out of the uncovered eye anyway. She was just being really efficient by only covering one eye.

Also today, a the speaker in our church meeting talked about gratitude. He was listing off many of the things that we forget to be grateful for and asked us to consider some of them today. One of the things he said was, "Do you ever express gratitude for eyeballs?" Stephanie and I exchanged knowing looks and I suppressed laughing. We have certainly learned to be grateful for eyeballs, and we express it on an almost daily basis.

We are sure grateful for all of the prayers and support that we have received and continue to receive! We hope you all have a very merry Christmas.

Crazy Christmas Photo Shoot

We were taking pictures in front on the Christmas tree tonight and I told them that we needed a crazy picture. I thought Gracie looking pretty hilarious in these photos!

Favourite Gracie Quote

Said as I was cleaning her eye which had fallen out - "If you had two fake eyes it would be really hard to see."

Another EUA and all is well

On November 12 Gracie went for another EUA. The picture above is Gracie with Dr. G., right before her EUA. She was excited to get a picture with him and told everyone that spoke with her that she would like a picture with Dr. G. Something that once was so pivotal in our life is now almost a non event. In fact, since we had a hard time finding someone to take care of our other children I stayed home and James went by himself with Gracie. Two years ago that would have never happened. But we're no longer worried about new tumor growth. Gracie is now 5 years old. By now many practitioners would say that Gracie no longer needs EUA's but can just do office visits. However, Dr. G. is a very thorough, some would say over cautious, doctor (which we LOVE) and he does them until the age of 7. As of this visit however Gracie is only required to do EUA's every 6 month! So she has a grand total of 4 EUA's left and then she never has to do another one again. Dr. G kind of laid out a road map of what we need to do with Gracie in the future. So it's EUA's as mentioned. 2 more MRI's at intervals of 6 months. After she's turned 7 she'll still need to have dilated eye exams done every year, but any ophthalmologist will be able to do them, it won't require a RB specialist. In fact they won't even really be screening for RB any more they'll be looking for complications caused by all the treatments in her left eye such as cataracts and glaucoma. She'll also require annual check ups with her oncologist and followup for any unusual symptoms.

He also recommended that when she's old enough to start menstruating that we take her to a geneticist to discuss her genetic mutation and the complications that this can have with her own children. He suggested puberty as the ideal time because she'd be old enough to understand a bit more and because she'd be fertile then. I really liked that idea because I've been wondering when the best time would be to tell her about her genetics. Gracie, like many girls, likes to talk about that future "someday" when she gets married and the children she'll have. Families are important to our family, children are important to us. She knows that and she dreams about having a family of her own someday. You can't exactly tell a 5 year old that having children is kind of complicated for her. She's too young to understand, and she's too young to have that kind of a burden even if she did. But I don't exactly want to spring it on her right before she gets married either. I thought Dr. G's suggestion was simply the best timing possible, I think.

To be entirely clear. Gracie will have no complications (that we know of) conceiving a child, but her children do have a 50% chance of inheriting her genetic mutation on her RB1 gene meaning that they have a 50% chance of developing retinoblastoma and all the other health risks Gracie has. As a result some people decide to adopt children, others decide to do preimplantation genetic screening of embryo's, and others decide that they just want to have children the old fashioned way despite the risk. We will support Gracie 100% in whatever decision she makes when it comes time for that, but she needs to have all the knowledge required to make her decision.

Hopefully in 20 years this will all be solved and they'll know how to fix the deletion she has. But if they haven't, truthfully the further out we get from this ordeal the more I hope that she'll just put things in God's hands and have a baby. I look at her and see how strong and beautiful she is and think how very insignificant of a role cancer has played in her life. It's ancient history, just a distant memory. The only thing it has done is make her stronger and more beautiful. The only decision that would make me truly sad would be for her not to have children, because then she'd miss out on some of the greatest joy that life has to offer. It would be sad for me to see her consciously choose to miss out on that. But Gracie is a smart and vibrant girl who is filled with faith and a love of her Saviour and I know that she will make the best decision for her when the time comes. But we have years and years till we have to worry about that and I'm just going to spend the time loving my little girl and listening to all the big dreams that she has. What a wonderful world this is with her in it.

Gracie's First Talk

In our church (the Church of Jesus Christ of Latter-day Saints) the children ages 3-12 go to primary, which is kind of like Sunday school specifically for children. Each Sunday two children give talks in primary closing exercises. Today Gracie got to give her very first talk ever. It was an exciting thing in our home! She was asked a week in advance to give her talk and I think she had the talk written about a half an hour after she was asked. She was that excited. James tried to help her write it, but every time he suggested something she'd say "No dad, I want to say this". She knew EXACTLY what she wanted to say. So I hope you enjoy Gracie's talk, written all by herself, with only a little bit of help from her dad in order to make it more fluent. She worked hard all week memorizing it and she spoke loud and clear so that everyone could hear her even at the back of the room which was quite a feat given that the microphone wasn't working. What a joy this girl is!