Sunday, December 12, 2010
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.
Thursday, December 9, 2010
Friday, December 3, 2010
Thursday, December 2, 2010
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.