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!

Trip to the zoo and MRI

This is Gracie at the zoo with her mom's favourite shirt. We had a fun time with some friends from Boston that just moved to Texas. It was so much fun to see them and spend the day together!
This is a cool slide at the zoo where the kids could slide through the otter tank. The otters loved playing around the slide as the kids went down.

Last Friday (the 13th of August), Gracie had an MRI. She is supposed to have MRIs every six months right now just to be sure that everything is OK. She was pretty excited to go to the hospital and was happy to chat with everyone that came in. Our first nurse asked if I had any questions and I said no. She asked Gracie if she had any questions and Gracie said, "Yes, I have one question." Then there was silence and the nurse finally said, "What is your question?" Gracie slowly said, "Ummm. Why do I have hair?" The nurse tried not to laugh and thought for a moment then asked me what I thought.

Then after Gracie had finished her MRI and we had walked down to the recovery room, our discharge nurse noticed that there was something right in the middle of Gracie's right eye (her prosthetic eye). This happens often as eye goop gets left where the eyelids meet. The nurse that had walked us into the recovery room seemed to try to get the discharge nurse's attention to let her know that it was a prosthetic but she persisted in trying to see what was on her eye. I leaned over Gracie and looked at her eye then used my thumb to wipe all of the goop off the center of her prosthetic. The nurse gasped and jumped back. I laughed and said it was a prosthetic. Gracie chuckled too and said, "That is my fake eye." The nurse looked at us and then said, "Gracie when you get older you are going to have a lot of fun with that eye." I think she already does.

Anyway, we have not heard back the results of the MRI but do not really expect to hear anything either. Gracie is doing really well and finished two weeks of swimming lessons in the last month. She loves to swim and we try to get her and her siblings to the pool frequently.

Our Medical Celebrity!

A flower girl at Uncle Cam and Aunt Jenna's wedding in Cardston Alberta. She's growing up way too fast! What a gorgeous little girl!

At IHOP having the traditional post anesthesia pancakes!!

Gracie on her way out of Texas Children's following her most recent EUA on June 18th.

Dr. M Gracie's oncologist in Houston and Katie the nurse practitioner who has been with us through this whole journey. They both take really good care of us.

Beth is the retinoblastoma coordinator at Texas Children's. I've only met her in person a couple of times, but she's my number one contact any time I need to call Houston or get anything arranged. She's a great patient advocate!

Okay, Gracie's not quite a medical celebrity but she is taking part in ground breaking research. June 18 Gracie went for her latest EUA. All was well and in fact she doesn't have to go back until her 5th birthday in October. A couple of days before the EUA we got a phone call from Dr. M Gracie's oncologist in Houston. He sounded really excited as he told me that Baylor University was doing a cutting edge study that they wanted Gracie to be a part of. It wasn't until later that night when we got a call from Dr. P (Gracie's geneticist) when we figured out exactly how cutting edge this was. They want to know more about the genetics of cancer. With rb children (who have the heritable form) we just happen to have a group of young kids who are highly prone to cancer. They want to do an in depth study of their DNA to try and find out all that we can about them. Hopefully this will lead us closer to finding a cure for this horrible disease. So they are going to study Gracie's DNA with a fine tooth comb and map her entire genome. To put it in perspective of how in depth they're looking only about 20 people in the world have ever had their DNA examined this closely. I thought that was pretty cool. Hopefully my baby girl will help cure cancer! Let's take care of this thing before we have to deal with it again, with Gracie, her children, or any one else that we love!

(James is telling me my terminology is all wrong. Sorry, I'm not a geneticist, or even a scientist for that matter. If you happen to be a Harvard biochemist or MIT chemist and are reading this you can email me with any corrections : )

Anyway all Gracie had to do for the study is give them some blood. It was supposed to have happened while she was under anesthesia for her EUA but somehow got missed. We went upstairs to the cancer clinic and they did it there for us. Beth took care of the little slip up. When I talked to her about it before we found out what went wrong I said "It's okay" her reply was "Not with me". It's great to have such wonderful practitioners working with us. It seems that they problem was an anesthesiologist who simply didn't want to bother with it before he started the IV. He knew it was supposed to be done, the OR nurse gave it to him, and he just didn't do it. So Gracie got a second poke because he was just too lazy. Or so it seems. I'll give him the benefit of the doubt and assume that he had a good reason. It didn't kill Gracie to get a second poke. She didn't love it either, but she got over it quickly. She always does. Of course we went to IHOP after the EUA. It just wouldn't be a proper EUA if she didn't break her fast at IHOP. The day after the EUA we headed off to Canada so we could go to her Uncle Cam's wedding. It took us three days to drive up. We stayed for 6 and then it took 3 days to drive back. It was wonderful to be able to play with cousins and visit with grandparents and aunt's and uncles.

We Can Relate

This woman's experience is much more difficult than anything that we have experienced over the last two years and I want to acknowledge that. But what she is saying is something that we can completely relate to. In the past I have worried so much about how Gracie losing an eye would affect her appearance and self esteem. Will she still see how beautiful she is? I don't really worry about that any more. She is a strong and confident girl, and I pray she always remains so. But when I watched this woman's story I was reminded of how we are so much more than just our physical bodies, and how our trials can make us better. I feel mine have. I just need to learn how to improve myself better on my own. Maybe then I can skip over the trial part and move right onto the learning part, because it sure hurts when you're in the throng of things. But hope is everlasting, as is joy. And I am so grateful to be the mother of my children, no matter what pains and trials come with it, it's all worth it to have them in my life. It is one of the greatest honours God could bestow upon me second only to being James' wife.

Stephanie