We love Gracie

Gracie Pics

2011-07-29T07:01:00.002-05:00

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

2011-07-27T00:22:00.004-05:00

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

2011-01-23T21:44:00.004-06:00

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

2010-12-12T21:34:00.002-06:00

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

2010-12-09T19:53:00.003-06:00

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

2010-12-03T00:10:00.002-06:00

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

2010-12-02T23:13:00.003-06:00

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

2010-09-26T20:20:00.002-05:00

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

2010-08-18T13:12:00.005-05:00

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!

2010-07-15T21:21:00.005-05:00

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

2010-05-17T23:08:00.000-05:00

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

Gracie Won!!

2010-05-01T19:35:00.002-05:00

Here is Gracie finishing her "Survivor Lap" at the relay for life last night. She loved it so much! She had a survivor friend that walked with her the whole way but when Gracie saw the finish line she bolted. Everyone cheered her on through the finish line!

This is Gracie and her sisters right before they did the Pledge of Allegiance to kick off the relay. They did a really great job. The microphone did not work very well so they just started saying it louder, which worked out well. I never realized Gracie knew the pledge so well. It was a fun night but everyone has been exhausted today and will sleep well tonight!

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

2010-04-28T19:35:00.002-05:00

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

2010-04-28T19:22:00.004-05:00

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

2010-04-26T21:05:00.002-05:00

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

2010-04-14T22:42:00.002-05:00

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

2010-04-12T23:41:00.001-05:00

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

2010-04-11T23:58:00.003-05:00

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

2010-04-11T09:17:00.002-05:00

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

2010-03-21T20:14:00.002-05:00

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

2010-02-01T20:32:00.002-06:00

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

2009-12-15T20:00:00.002-06:00

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!

National Retinoblastoma Strategy

2009-11-29T21:26:00.002-06:00

This may not be of interest to people just checking in on Gracie, but if you happen to be concerned about retinoblastoma this will be extremely nice to know. Canada is the first country in the world to have published a multi disciplinary, multi institutional guideline for care of retinoblastoma throughout the nation. Sorry, as a proud Canadian I couldn't resist bragging about that. It was published in this months Canadian Journal of Ophthalmology and it is absolutely EXCELLENT. It is useful because RB is such a rare cancer that most facilities really don't know how to treat it best and as such children are getting diagnosed much too late and are not receiving the best care available. By creating these standards for care it should help to inform ALL opthalmologists and hospitals of what they need to be doing to treat RB as well as clarifying what criteria indicate that a child really needs to be referred to a more specialized center. By doing this it makes it absolutely clear that there is absolutely no excuse for doctors/facilities with limited RB experience to try and treat patients whose cases are way above their heads just for prides sake, which yes really does happen. It's a very long read so I've only read about half of it so far but I'm really impressed with it. Apparently Kenya is also trying to make a similar national strategy for care. Hopefully the other countries in the world will realize the need for just such a publication. When caring for kids who already have so much to deal with the care needs to be focused on what is in the best interest for the child and not what will bring the most money into the hospital. More collaboration and less competition would be nice if these kids are really going to get the best care possible.

Here is a link to the document if anyone is interested in reading this. You'll definitely want to read it if you are affected by RB. http://article.pubs.nrc-cnrc.gc.ca/RPAS/rpv?hm=HInit&calyLang=eng&journal=cjo&volume=44&afpf=i09-194.pdf

Grace has another brother!!

2009-11-16T20:59:00.003-06:00

OK- so this picture is not about her baby brother but is from her 4 year check up. Everything looks really good but because of the chemo treatments she was behind on her shots and had to get 6 shots. She was not at all impressed when she saw the tray of needles and less impressed when I held her down and let the nurse stick her six times. All was well once she found her prize and sticker. She slept the entire afternoon while Stephanie and Gracie's new little brother got some one on one time!

This is Gracie modeling the dress that Stephanie made her. Gracie will wear it at my sister's wedding in December! She is pretty excited and extremely cute!

Here is Gracie's new brother at one day old. He looks pretty relaxed doesn't he? Gracie's hair is so funny. Usually Stephanie uses lots of gel to keep it from getting out of control but Gracie was gel-less this day. Her glasses are crooked in the picture but that is par for the course with a 4 year old. In fact it has been the standard for my glasses since I was 9 years old despite my mom's insistence that I not play basketball, football, wrestling, etc, etc with them on. A few months ago, I remembered her advice and took them off the play softball but when the game was over someone had stepped on them and they were all mangled up anyway.

Gracie is a huge help at home. She takes care of her new brother so well. She knows exactly what to do if he starts to cry at all. She just says, "Mom, the new born baby is hungry and needs you really really bad! Please come and feed him!"

The baby's eyes have been examined with dilation and they look "perfect." He will also have an exam under anesthesia and genetic testing in early December when Gracie returns for her next appointment. Oh the joys of having a child with a genetic disease.

Life has been crazy in our home with school and work, but we have been richly blessed. We continue to thank you all for your concern, your love and your support.

You've Had a Birthday Shout HOORAY!

2009-10-09T22:24:00.003-05:00

The post title is the name of a song kids sing in primary for our church. So really it'll mean more to you if you know the song. Gracie had a birthday as of late. This is her blowing out the candles on her cake that she requested. She first asked for a castle cake and I had a pattern I was going to use, but then when she was talking on the phone to my sister she started describing a cake that is nothing like the cake in the pattern. So I did my best to create what she wanted. This was the result. James looked at it and said "Have you seen Monsters Inc lateley?" Yes, it does kind of look like a monster doesn't it? But she said it was EXACTLY what she wanted. And unlike usual cakes that look good, this one actually tasted good. It's our families favourite chocolate/strawberry/pudding cake made to look like a castle/monster.

She LOVES to help.

So excited to get her present from grandma. It'll help her pass the time during the countless hours that she spends waiting in doctors offices and hospitals. Oh yes, she and her sister had just finished playing pioneer in their pioneer dresses that they love so much.

Longer Hair

2009-10-09T22:03:00.004-05:00

This picture was supposed to be the last one as the post is really about how well Gracie's hair is growing. But I wanted to include this one for a realism factor. Usually we only put in pictures where Gracie's eyes are both looking in the same direction, here is one where they aren't just so you can see what it looks like. Her prosthetic is most limited in motion to look up and outwards. As a result when it's most obvious to us that her right eye isn't real is when she's looking up at us. James actually came home with a really funny story. He was talking to a lady and something just wasn't quite right with her eyes. Given that we have a daughter with a prosthetic eye that is the first thing he thought of. So through the entire conversation he just kept staring at her eyes and wondering (trying not to make it too obvious). He wasn't trying to be rude, it's just something you notice more now that you see it every day in your daughter. But then she looked up and both eyes looked up, making it very clear that it wasn't prosthetic she probably just had lazy eye. However there are times when James and I find ourselves having to remind ourselves which one of Gracie's eyes is fake. It's just such an amazing prosthetic. We're so happy with our ocularist and the work he does. Now if we can only work on insurance and their ridiculously inadequate coverage of a prosthetic. Ah, the joys of working a system.

Yesterday I realized that if I leave some bangs out Gracie can wear little tiny piggy tails. Her hair was already dried when I put them in so the bangs don't look their best, but still it's showing real progress in the hair growth department. Before we know it she'll be back to pony tails. Oh yes, she's not wearing glasses because she left them on the floor for our dog to eat them. This picture was taken right before we left to go pick out her new glasses. Stayed tuned for a post of her modeling her new glasses. Once again, they're pink.

This is Gracie playing around before church on the first day that we realized we could pull her hair back in an elastic. Her hair is so thick and so curly that it takes a lot of gel to hold it in place when it's this short or else she just looks like a fluff ball. James loves that look, he thinks it's hilarious. Gracie looks in the mirror in the morning and says "Mom my hair is CRAZY!" But when it's done she just looks super cute.

A Call For Educational Reform in America!

2009-10-03T13:27:00.003-05:00

Our daughter in second grade came home with an English test which had been graded. One of the questions desperately needs to be amended. It reads:

When I run, my _________________ falls off.

a. sneaker

b. eye

c. story

They graded it as if "a" was the only answer. James looked at it and started to laugh. He showed it to me and we both agreed that this definitely wasn't as straight forward of an answer as the teacher supposed. We believe that the answer a. or b. would be an acceptable one. Given an eye would more correctly fall out than off, but more or less it's the same thing. Ah, some of the things you get a kick out of when you have a monocular child. We were just discussing a primary song that they sing in our church called My Heavenly Father Loves Me. The choir just sang it in General Conference this morning and it's one of my very favourites. It's all about the beautiful world the Lord has given us and our wonderful bodies. The opening line of the second verse states "He gave me my eyes that I might see the colour of butterfly wings". We once again laughed and taught Gracie that it's okay if she sings "eye" rather than "eyes" but then there isn't enough room to add "Mr. Craig gave me my other one". Yes, we're full of one eyed jokes in our family. Don't worry we deliver them in a way Gracie finds hilarious. I'm not sure that they'd always be so funny. I guess like all things it depends on who says them and the spirit in which they're delivered. If she wasn't having part in the fun we'd all stop.

On another note Gracie had her 14th EUA yesterday. Just her dad took her this time. All looks really well. Dr. G. wishes that the larger tumor in the left eye looked more flat than it does, but we may not get that. This may be as good as it gets. He couldn't tell the difference between yesterdays pictures and last months pictures. In his words "We're nearing the end" of the laser treatments. Things actually look so good that she doesn't need to go back for another appointment until December! It seems that Gracie recovered from her anesthetic better than she ever has before and by the time James was called back to the recovery room she was stating that she was ready to go.

When Gracie goes for her next EUA she'll be going with her new baby brother! Yes, we're having another baby. James and I have both been genetically cleared for the RB1 mutation that Gracie has (which is the cause of her RB) but experience has shown geneticists that even when the parents don't test positive for the mutation there is a 5-7% chance of having another child with RB. It's due to a mosaic form of the mutation in which not all, or even most of your genes carry the mutation but more than one do. We know for certain that either the egg which created Gracie or the sperm which created Gracie had this mutation. So there is a small possibility that James or I carry more than one affected egg or sperm. For this risk our new baby has to undergo testing for RB until we can determine that he is negative for the same mutation Gracie has. We had the option to perform amniocentesis and run the genetic tests in the prenatal period but we decided not to take even the small risk that this posed for the fetus. When we explained this to Gracie's geneticist she said that this was the same decision that most families come to who decide that they wouldn't terminate the pregnancy regardless of the outcome. We will be drawing blood on this baby at the December appointment to send to Toronto for the genetic testing. Toronto has the absolute best RB testing lab in the world. In the first couple of days after the baby is born he's seeing our pediatric opthalmologist here just in the clinic to rule out any tumors that would be an immediate threat. At the December appointment in Houston (when his genetic tests will be drawn) he will also undergo an EUA so that Dr. G can 100% confirm that there are no tumors on the retinas. After that we should have his genetic tests back in a couple months and he won't be required to do any further testing for RB. Of course any child should routinely see an optometrist trained to do pediatric exams including retinal exams with a dilated pupil, this isn't only looking for sporadic cases of RB but also for a numerous host of other eye conditions where early detection is critical. And oh yes, although James and I have this 5-7% risk cousins and aunts and uncles are still in the clear. So don't worry you don't need to all run out and test your kids.

Stephanie

Some pics for Gracie

2009-09-21T20:31:00.003-05:00

Here is Gracie in the rain storm. We had not had rain all year and so when it came Gracie and her little brother headed out to dance in the rain!!
Gracie loves to help her mom bake. Especially when the baking includes chocolate!

In other news, we are so excited for Noah and his family (they are friends in Boston). We have been very worried and been praying constantly for them over the last two days. They had done an MRI and were concerned about cancer in Noah's brain. However, we just got word that the tests are not indicative of cancer. Hooray!! We are so excited and reminded once again of the miracles from faith and prayers.

Lucky #13

2009-08-30T18:59:00.002-05:00

Gracie had her 13th EUA on Friday August 28th. Ah, a full year of going to Houston at least every four weeks. Well I'm excited to report that everything went well. The right socket looks excellent. There are no new tumors and the two tumors in the left eye continue to die. Dr. G figures he'll only laser the tumor one or two more times and then we'll just continue with observation, no more treatments (unless necessary). So the excellent news is that we can now extend the time between EUA's to every 6 weeks. It might not seem so exciting to everyone else, but this is thrilling to us as it cuts out one trip to Houston every 3 months! Remember it's a three hour drive one way so each time we go it takes our entire day. For the EUA we had an anesthesiologist who we've never had before. After the exam she came to talk to me in the recovery room. She told me how happy she was to take care of Gracie mentioning that "That's one sweet little baby girl you've got" I had to answer with "Thank you, she is isn't she?" I'm so glad I'm her mom - I must have the best job in the whole world. We're grateful for all the blessings in our life, whether big or small.

Oh yes, yesterday morning I was watching Gracie as she was playing with a small teddy bear which only has one eye (thanks to our dog). Gracie was talking to it and said "Oh look, your eye is broken!" To which I replied "Should we get it a fake eye just like yours?" Her answer was "Yes, because fake eyes are really cool!" Obviously this prosthetic hasn't set her back a bit.

Stephanie

Diagnosis Day

2009-08-25T22:46:00.005-05:00

Gracie and her siblings

Gracie with her bear "Diagnosis Day" cake. Her hair gets a little crazy after a hard day of playing, but she's still cute as can be!

Today is the one year anniversary of Gracie being diagnosed with bilateral retinoblastoma. Really this month has been full of notable days, and we've remembered each and every one of them (although not with an actual party, more just a passing mention). On August 9 I first saw the white mass in Gracie's eye, on August 18 we first saw the opthalmologist and heard the word cancer mentioned as a possibility, August 19 she had her first CT scan which indicated it most likely was cancer. But it wasn't until August 25 when we were back in Austin and saw Dr. O that the diagnosis of bilateral retinoblastoma was confirmed. No one even thought of it being bilateral until that day and we continued to hold out hope that it was something else even in the right eye until it was 100% confirmed otherwise. But this isn't a sad day for our family today. Don't get me wrong a year ago we were completely devastated by the news we received today. But today we consider this a day to celebrate. Had we never known about Gracie's tumor's we could never treat them. Because of today we knew what we were dealing with and we had a plan of attack. Without diagnosis day we might not have her here with us today, and if we did we'd be fighting an uphill battle. So we rejoice in the many blessings that are ours today and for the blessing of having each of our children in our lives today. We are so grateful for the many miracles which have been manifest in our lives over the last year. God has been so good to us. We celebrated today with an ice cream cake from Baskin Robbin's which Gracie got to pick out with her older sisters help. It was a fun night. I look forward to celebrating many August 25th's as well as May 29th's. They are a celebration of life for our family.

Stephanie

Routine Check Up

2009-08-13T13:25:00.003-05:00

Gracie met with her Austin oncologist Dr. L. yesterday as she needs to get scheduled for her routine hearing tests, kidney tests (GFR) and MRI. She needs the kidney and hearing tests to monitor how well they're functioning after chemo as the drugs she was on are known to impair them. The MRI is just something she is required to have every six months until she's six or seven because there is a very small risk for her developing trilateral retinoblastoma until then. Trilateral retinoblastoma is when tumors start growing in the pineal gland (in the brain). They don't spread there, rather it is just another site (like the retina) where the tumors can spontaneously grow. My theory is that trilateral rb is the reason why they say the survival rate of rb is 95-97% if contained to the eyes. Originally I was wondering why the survival wouldn't be 100% if it was contained to the eye, but then I remembered trilateral rb. In such a case you could remove both eyes at birth and still die of rb if it started to grow in the pineal gland as it's extremely difficult to treat. Thank heavens trilateral rb is extremely rare and we just check most kids to be ultra cautious.

The good thing about going to the Austin cancer clinic is that Gracie got to see her best friend Claudia, the child life specialist there. If you remember she is absolutely fantastic with Gracie. Of course we love Dr. L. too, but Claudia's whole job is to try to make the kids experience as good as possible. She's absolutely amazing at what she does. Remember she's the one who hooked our other kids up with Super Sibs and applied to Make A Wish for Gracie. Anyway, Claudia gave Gracie some more beads of courage to add to her collection. She has now started her third string! Claudia also mentioned that they'd like to throw Gracie an end of treatment party. This is something that they do for all children when they finish treatment, but I didn't think Gracie would get one here because she didn't actually do her treatment here. Although she did spend a lot of time at the clinic due to all of the transfusions she required (9 in total). So sometime in the next few weeks we'll go back to have her end of treatment party. A cake is made and donated by the wonderful "A Taste of Bountiful Bakery" and Gracie gets to choose exactly what she wants. So far she is requesting a strawberry Belle cake with pink icing. Interesting. Our family is really excited as all the kids are invited, we'll even pull them out of school if necessary. We're so grateful for the wonderful care we receive here.

Stephanie

EUA #12

2009-08-01T10:42:00.002-05:00

Yesterday Gracie and James headed off to Houston for her routine EUA. For the first time ever I stayed home as we had 3 sick kids here that needed their mom too. This trip was a little exciting though because we were told to be there at 1130 for a 1:30 OR time. I received a phone call at 11am asking if Grace was coming. When I said yes the lady on the phone asked what time we'd been told to arrive. Apparently she was really supposed to be there at 1030 for a 1230 OR time. James had left a little late (even for the 1130 arrival time) so now we were really running behind. You can only speed up a 3 hour drive so much. The staff all know us well though so they were all quite understanding of the miscommunication. We've been going there for almost a year now and we've never been late before. Wouldn't you know it that this was the day that they were actually ahead of schedule (the last two EUA's they've been over 3 hours behind schedule). By the time James and Gracie arrived people were working like crazy to get them in as soon as possible. How nice not to have to wait! But hopefully it won't happen like that again.

The EUA went well. No new growth. Dr. G still wants to keep lasering the one tumor every 4 weeks as he's not yet 100% convinced that it's completely dead. We totally support him in that decision as we certainly don't want the tumor to start growing again and be set back several months in treatment. After the EUA Gracie had a surgeon come in and remove her port. So now she's port free!! We're glad she was able to have it when she needed it, but now that she's done with chemo let's get that thing out of there. The fewer foreign objects one has in their body the better. Now if she has a fever she's just like every other child, with the port in a fever required a trip to the ER. We've been very blessed that she's only had one fever in the 11 months that she's had the port.

We consider ourselves so fortunate that Gracie's left eye has such a good prognosis and that her vision is still excellent in that eye. So many bilateral RB kids end up with either both eyes removed or the remaining eye has such limited vision after treatment that they're legally blind any way. How blessed we are that there was such disparity in Gracie's left and right eye. We are quite certain that although Gracie will only have monocular vision that the acuity she has will always be good, even though the field of vision is somewhat limited. The Lord really has been taking such good care of us, not only through the past year, but through our entire lives. Life couldn't be better.

Stephanie

Day 2 The Eye Is Complete

2009-07-21T18:03:00.005-05:00

Here is the eye all painted, it still needs another layer of whatever the eye is made of and some buffing and polishing until it is complete. Prosthetic eyes are made of plastic polymer, they used to be made of glass until WWII. The glass they used to make them was supplied from Germany so obviously was no longer available at the time. Some doctors? (I don't remember if that's the profession or not) and dental technicians (I know I remember that one right) got together and developed this plastic polymer for making prosthetic eyes out of. It turns out this material is lighter, safer and more durable so obviously they never returned to making glass eyes after the war ended. The blood vessels of the eye were the most amazing part for me. See the red thread, the kind you can buy at any fabric store. This is what Gracie's vessels in her right eye are. He cut a small piece off and frayed it until it was very very thin and then put them onto the eye. Once those were on he used paint to finish up the sclera as no one's sclera is truly white.

Gracie and her ocularist once the eye is totally complete. Her prosthetic is her right eye, his is his left. I had to demonstrate that I was able to put it in myself before I was able to take it home. Plus I got a little lesson on prosthetic eye care. Basically I just leave it alone unless it comes out. If it comes out I clean it with baby shampoo as it leaves no residue and pop that puppy back in there. She has improved so much with letting me put her eye in. She didn't even really fight when I took my turn and put it in.

A close up of Gracie modeling her eye. Oh, and the eye was lighter yesterday. He said they always have to make the eye lighter to begin with and then they darken it as required. If the eye is too light it's easy to darken it, but if it's too dark you basically have to start again from scratch. I think it's a pretty good match in the end. The eye looks great, but I wish the movement was better. The ocularist says that will only improve over the years. She still has swelling around the eye that could last for another year, as well as she grows into the implant better (remember they put in an adult sized implant so that they wouldn't have to repeat the surgery as she grows older) the prosthesis will suction to the implant more and allow better movement.

Day 1 of Making An Eye

2009-07-20T21:10:00.004-05:00

Gracie had her first of two days meeting with the ocularist today in order to make her new eye. She was such a trooper! I was amazed at how well she did, and she was pretty proud of herself too. We took a few pictures to kind of chronicle the process.

Obviously her conformer had to be removed before he could start making a mold of her eye socket. Here is a picture of her without it in. It might not be as noticeable in the picture as in real life but her eye lids look much more sunken without the conformer in. That thing does an excellent job of giving the eye lids some shape.

I learned that there are a couple of different ways to make a mold of the eye socket. One commonly used is to inject a putty type stuff into the socket and let it harden. It's kind of like getting a mold of your teeth done. This is what they have video of on YouTube. Our ocularist feels that that method is quite traumatic on children, often they do this while they're still under anesthesia. He prefers to use a different method. It is much more pain staking as he makes a mold with wax by hand. He had to put it in and out of Gracie's eye at least 20 times to make sure he had it just right. It's his belief that you actually get a better fit with a child this way. Once he had the exterior mold done then he put some gel inside it and took a mold of the interior of the socket. The gel sat in her eye for about two minutes. When set it is the consistency of a boiled egg white. This was the part she liked the least as it feels pretty cold in the socket. But despite that she did her job well, she tolerated him playing with her eye for over two hours and the cold gel in her eye for two minutes. Way to go Gracie!!

Here's Gracie modeling the mold in her eye. She kept calling it her bubble gum eye as it's just the right colour so the sheet of wax really did look like a sheet of bubble gum. The hardest part of making an eye is getting a proper fit. He spent two hours making a mold and only about 30 minutes painting the iris (if that).

I thought that he painted the iris onto the eye itself. But no, the iris is a separate disc that he painted today and then inserts into the eye as it's being cast. So here is Gracie's iris being painted. Oh, in case any of you were wondering you are required to have a bachelor's degree preferably in the sciences in order to be accepted to apprentice to become an ocularist. Then the apprenticeship is 5 years of on the job training. And yes, I did ask permission before taking all these pictures of him working. He didn't mind a bit.

A close up of Gracie's iris. The iris is painted on a little round disk. The pupil is separate from that disk. It's a little suction cup looking thing with a black pupil in the center. The two (iris and pupil) are obviously joined together while the eye is being made, and the clear little handle which you see on the front of the eye is removed sometime during the process too. The black handle in the back is not attached to the iris, it's just there so he can handle it better.

The iris/pupil and Gracie. In the pictures it appears that the iris is a little too light to me. I didn't notice that until I got home. We'll have to see how it all turns out tomorrow. Tomorrow is when the sclera (white of the eye) gets painted and the final fitting gets done. AND we get to take home a new eye. Today was the hardest day by far for the process, or so we've been told, so tomorrow should be a piece of cake!

Gracie's Hair

2009-07-14T21:42:00.002-05:00

We get a lot of emails asking if Gracie's hair is coming back curly again. The answer is a resounding YES!! We also get a lot of comments that her hair appears darker than before. I'll agree that it looks darker than before, but I'm not convinced that it actually is. The roots are always darker than the tips and it hasn't grown out enough to know if the sun will bleach out her hair enough so that it's the same colour as before. This is kind of what I think, but of course only time will tell.

Stephanie

Pathology of Gracie's Eye and Gracie Meets Her Ocularist

2009-07-08T20:38:00.004-05:00

Pictures of Gracie's conformer when it was removed for polishing. Sorry they're fuzzy it's hard to get a good close up shot with a phone.

We forgot to mention that at Gracie's last EUA we got the pathology back on her right eye. It showed what we already knew, that there were active tumors growing on the lateral side of the retina and confirmed what we suspected - the gazillion seeds in that eye were active and continuing to grow. Basically this 100% confirms that we made the right decision in enucleating that eye as there were so many seeds that it would have required ridiculous amounts of radiation to even attempt to bring them under control and even then the odds would have been very much stacked against us. Repeat chemo would have very low odds of efficacy. Basically the eye was unsalvageable.

James and I have said repeatedly that we would absolutely not subject Gracie to radiation. This is absolutely true, but I feel like we should clarify. The key word here is GRACIE. This experience has reinforced to us how absolutely every single case of retinoblastoma and every other cancer for that matter is completely different. No two cases are the same. In Gracie's case radiation was not a good option, but there are a hundred and one other scenarios when radiation would absolutely be the best treatment for a child with retinoblastoma. I won't begin to name them there are so many possibilities, most of which I really don't know much about. But I know other families who have chosen to do radiation, and if I were in their shoes I would have absolutely made the same decision. We're all just doing the best we can for our babies. That's one reason why it's so important to have experienced and educated doctors directing us and informing us of our choices as we make decisions. They've seen a multitude of different scenarios and they know what treatments will give our child in particular the best chances for beating this cancer and maintaining vision while doing it.

Back to the pathology, it also indicated that the three tumors close to her optic nerve were no longer active. Now, inactive tumors can reactivate, so we have no idea if they would have stayed that way. We don't know if the chemo stopped them or they stopped on their own. But we know when the eye was removed the tumors were no longer growing. It also showed that although Gracie definitely had RB (not a big shocker) there were no "high risk" features. Meaning that it hadn't grown into the optic nerve or the choroid or the anterior chamber, all modes for leaving the eye. As a result we can safely say that Gracie will not be required to undergo further chemo and as such she will have her port a cath removed at her next EUA on July 31! (Not by Dr. G. in case any of you were worried about this, we're coordinating schedules with another general surgeon) This is a big landmark for us as we have always had to keep it in "just in case". Well now we know that we really don't need it there any more, we're no longer worried about a "just in case" scenario. This is one more step toward putting this all behind us.

Gracie had her first accident due to monocular vision (that we know of) on Sunday. We were walking through the church parking lot and she ran full steam ahead into the side mirror of a car. She smashed the right side of her face pretty good. But she'd settled down by the time we got into the chapel. We were warned by another family that those side view mirrors in parking lots were dangerous for these monocular kids. So they are. It's right at Gracie's eye level too. We'll have to keep a better eye out for them in the future, as it's hard for her to do it. She's so good at running around without accident though, I'm not worried about it affecting her safety much at all. She's adapting so well and it doesn't hold her back in the slightest when she plays. Kids are so amazing.

On Monday Gracie had her consultation appointment with her ocularist. Ocularists aren't doctors, they're technicians and artists as they hand paint the eye. She is scheduled to have her eye fitted and made in two weeks time. We're excited about that. Gracie let him take out her conformer without too much of a fight, and then he polished it and put it back in again. He figures he'll be able to fit the prosthesis just fine in his office. A miracle worker! I wonder if he does house calls in the evening to put ointment in eyes? He's got a lot of skill and everyone speaks very highly of the work he does. He showed us some sample eyes, Gracie picked one up and was ready to take that one right then and there as her new eye. We assured her she'd get one soon and one that was made just for her. She doesn't seem too picky though. He himself has a prosthetic eye and it looks great - not just good for a prosthetic, but really great. I knew going into the appointment that he had a prosthetic and I couldn't tell which one it was until he told us. I hope Gracie's looks that good with that much movement. He lost his in a bb gun accident when he was twelve years old. Perhaps that's why he's so good with Gracie, he knows what it's like. Any way unless there is a hiccough in the process Gracie should have her new eye on July 21. It'll be yet another landmark in this process. We're excited for then.

Stephanie

Too Cute

2009-07-05T21:43:00.003-05:00

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

2009-06-27T21:33:00.003-05:00

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

2009-06-10T17:21:00.002-05:00

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

2009-06-10T11:08:00.002-05:00

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

2009-06-08T01:01:00.007-05:00

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

2009-06-03T14:46:00.003-05:00

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

2009-06-02T20:09:00.002-05:00

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!

2009-06-01T17:49:00.002-05:00

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

2009-05-31T10:14:00.004-05:00

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

2009-05-30T13:18:00.003-05:00

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!

Surgery is over

2009-05-29T18:37:00.003-05:00

We are currently sitting in our hospital room. Gracie finally went for surgery at 2:10PM. At 2:30PM we got a call from the operating room saying that they had examined the eyes and were about to proceed with the enucleation. At about 4:50PM Dr. G came and spoke with us. He told us that the surgery went very well. There was some difficulty underneath and on the medial side of the eye because of the scarring. However, he took his time and everything went well. 8-10mm of the optic nerve were taken and an adult implant was used (size 20). This was important as the implant is suppose to last her whole life and having an adult-sized implant will help ensure the eye appears appropriately sized in her adult life.

Everything seems to have gone exceptionally well. It was still difficult to send her back into surgery and to have everything done. It was nice to know that so many people cared for her. We had several nurses speak to us that had cared for Gracie. One in particular came and told us how it had broke his heart when he heard that Gracie was coming in for "the procedure." He told us that she was such a sweetheart and how much they loved her. (In fact, he actually said- we love Gracie.) He came and gave her a big hug and then the nurse that took Gracie back whispered to Stephanie, "I really don't want to do this." It is true we really did not want to see the eye go but everyone knew we were working to get rid of cancer!

The patch on her eye is extremely large and she is not liking it very much. She wants to get rid of it all the time. We are trying to stop her from picking at it. The patch will be removed before we leave Houston (next Wednesday, Thursday or Friday). The eye lid is stitched shut and those stitches will be removed in a couple weeks. We will return for a consult and another EUA in 3 to 5 weeks. In that exam we will monitor the left eye for new growth and look at the right eye socket and implant to see how it is healing.

We are grateful for the support and love from the medical staff here. We are also accutely aware of the many prayers and love that have come from family and friends. It has and continues to lift and comfort us.

Surgery Day

2009-05-29T11:47:00.003-05:00

The surgery is scheduled for 12:30PM. We are currently in the waiting room. Gracie is her little happy self. She is enjoying drawing pictures of her "princess mamma."

I thought I would just quickly share a story about Gracie's sister (she is two years older than Gracie). She got up this morning as we were leaving and yelled down into the living room, "You know what day it is today?" There was a slight pause then, "it is the day Gracie gets her eye out and has no more cancer! I am so excited!!"

After that it is hard for the rest of us not to be excited about today too.

Thanks for your prayers, love and support.

Fun on the day before surgery

2009-05-29T00:14:00.004-05:00

These first four pictures are of Gracie at a splash park with her siblings and friends. She is having a blast (if you couldn't tell). I could not help but think that within 26 hours of these pictures she would no longer have any cancer! Or her right eye for that matter. It is hard to think something is truly wrong when she seems so happy and healthy. I also remind myself that Gracie will probably be having just as much fun at this same park in a few weeks time too. She will have a little less vision but her same big smile!

I am not really sure who her little friend beside her is.
This is how happy she was to be at the splash park. She loved playing in the water!

OK so this picture is from a week or so ago. Gracie and her little brother were loving the rain storm we were having. Yes, I know she does not have any pants and is outside in the rain- but I got some fun pictures and they were having a great time!

Surgery

2009-05-27T15:31:00.000-05:00

Gracie's surgery has been scheduled for Friday afternoon in Houston.

Prosthesis Video

2009-05-25T14:40:00.006-05:00

For those of you who are curious as to what a prosthesis looks like and what an empty eye with an implant looks like here is a really good video. The woman in the video lost her eye to cancer (choroidal melanoma) as an adult.

You'll notice that she doesn't have the extreme movements in the eye, but usually you don't move your eyes to the extreme corners. With regular movements you'd hardly notice anything was different. And some prosthetics have better movement than others too. I think hers probably doesn't have as good as movement as others I've seen.

Gracie to be Cancer-free!

2009-05-24T23:15:00.002-05:00

I want everyone to be absolutely clear about the exciting future that Gracie has in front of her. Sometime in the next 1-3 weeks (could be as soon as this Friday), Gracie's right eye will be enucleated (removed). Dr. G will perform the procedure at the Texas Children's Hospital in Houston. The subtenon injections from Gracie's previous treatments have caused scarring behind the eye and this makes the enucleation somewhat more difficult than normal (if you can ever call enucleation "normal"). Dr. G has experience in dealing with similar enucleations and it is important that the procedure is done well to preserve the muscles and nerves controlling the eye structures. Thus, Dr. G is probably the best one for the job, even though it is not as close as other doctors would be. Immediately following the enucleation, an implant will be placed in the hole left by the eye. This will help maintain the shape of the eye and have the muscles attached to it so that the prothesis will have some movement. A conformer is placed over the implant for the first 6 weeks until the eye has healed enough to get her prothesis fitted. The prothetic eye is much like a large plastic contact lens that goes right over the eye. It is hand painted to match the other eye. Once in place it will be difficult for people that meet Gracie to tell she has a prothetic eye. The surgery to remove her eye is fairly painless and she will be released from the hospital the same day. Dr. G wants us to stay nearby for a week just to make sure things are OK but he says they have never had problems before.

OK, now you have all of the details that I thought you might want to know about the process. As far as how we are dealing with it, it has sometimes been difficult. However, the days since Friday have brought happiness and rejoicing when we think about it. It is amazing that Gracie will be cancer-free!! All the tumors in the left eye appear to be dead and when the right eye is removed all of the cancer will be gone. We are so happy to have Gracie and will do all we can to help her be happy and healthy. Knowing that in a few short weeks we will not have to worry about the cancer spreading throughout her body or causing any other sickness is wonderful. So, while we are sad for the loss of her eye, we rejoice in removing a cancer! We are grateful to the support of our doctors and friends that have worked and prayed so diligently for Gracie and for us. We have felt your love and support. We have comfort in knowing that Gracie is winning her battle with cancer and her future is bright! While she does have this little hiccup in the near future, her potential is limitless.

Stephanie was talking to Gracie about enucleation today and Gracie was a little worried. At first she said that she had a real eye and did not need a fake one. Stephanie told her that her eye was sick and we wanted to make sure that it did not spread and make the rest of her body sick. Gracie agreed that she could have a fake eye to prevent that but she was still worried. She then said that she did not want any more needles in mommy's room (we used to have to give her needles after chemo to bring her counts up and did them in our room each time- Gracie hated them). Stephanie gave her a big hug and told her that we did not need anymore of those needles. Gracie was very pleased to hear that and cheerfully went back to enjoying her day. She is such a wonderful little girl. She has taught us all so very much about being happy and cheerful in spite of life's difficulties. We really do love Gracie!

Gracie's 10th EUA

2009-05-22T20:07:00.002-05:00

Today Gracie had her much anticipated monthly EUA. She was very pleasant as usual. She and I entertained the kids and parents waiting for their surgeries by playing unicorns, then cats and dogs, then Chihuahuas, etc. While we were making a birthday dinner, our doctor walked into the waiting room and she said, "Look Dad, there's Dr. Gumballs!" Sure enough, it was her doctor and we spoke with him for a bit. She headed happily back to the OR with the rest of Dr. G's staff.

The procedure was not as long as it is sometimes and 45 minutes later we sat down to speak with him. Stephanie and I both thought it was not really promising when he started with "Let's start with the left eye ..."

Dr. G explained that the left eye looked really good and the two tumors that had started there were probably both dead. He lasered one of them again just to be sure and expected to diligently follow any potential for problems in those areas. However, overall the eye looks really good and no problems are anticipated there.

The right eye was a bit of a different story. He showed us comparison pictures from one month ago and from today. It was obvious that there was significant growth in one of the tumors. This tumor was the one first seen last month. It is growing far from the optic nerve but still must be stopped. We knew from last month's discussion that the next recommended treatment was the removal of the eye. Dr. G briefly discussed radiation treatments but was cautious in making those recommendations as radiation is often associated with secondary cancers or with future problems in bone/muscle development in the area radiated. We had already come to the decision that we would not radiate the right eye previous to the appointment. We had several questions regarding potential effects of additional chemotherapy treatments. Dr. G explained that any of the approaches he knew about (and that we knew about) had not been too successful with previously treated eyes- like Gracie's right eye. He recommended that we think about it, weigh our options, talk to Dr. M (our oncologist) and get back to him.

We were pretty confident in the decision to remove the right eye, however, asked Dr. G and Dr. M to speak about Gracie today and than get back to us. Dr. M did call and spoke with Stephanie. He strongly recommended enucleation of the right eye. He too spoke of the dangers of radiation and problems with additional chemotherapy. Enucleation is very serious but it has relatively few future health concerns (besides losing part of your vision forever).

We have felt and immeasurable amount of peace and confidence throughout this process. The decision to enucleate is still very difficult and not taken lightly. However, we are excited to remove Gracie's cancer. That thought brings an abundance of relief and comfort.

We will fill everyone in on more details as we find them out. I just wanted to quickly post and let everyone know what happened today. We thank you all for your love, prayers and support. We have truly been blessed because of them.

The Day Before

2009-05-21T11:03:00.001-05:00

Tomorrow is another big day for Gracie as she goes for EUA #10. If there is new growth tomorrow then our decision most likely will be to remove her right eye. It's been a difficult month anticipating the results of tomorrow. A few months ago my friend asked me if Gracie's cancer was the first thing I thought about every morning, at the time the answer was no. But now it's definitely the first thing I think about every morning and the last thing I think about every night. I wake up in the middle of the night, just to think about it some more. I have cried myself to sleep more in the last month than I have in my entire life, because I've worried about all the what if's. How grateful I am that James is always there to hold me and just be there for me on those nights.

But finally after struggling all month, and off and on since her diagnosis in August, I have peace. I could let myself fall into fear and worry again it's not that far behind me, but I choose to hold onto that peace. Really we have done all we are willing to do in order to save her eyes. The risks of other treatments are not worth their potential benefits. We've done our part and now it is with complete confidence in the loving and merciful nature of our Lord that we completely turn her care over to Him. We know God is capable of taking this cancer away from her, and keeping both of her eyes. He made her, He knows every piece of her DNA, He knows how to fix this problem. We still pray that that is what He wants for her and what His plan is for our little girl. But if not, we still know that God has perfect knowledge and perfect wisdom. If He decides Gracie needs to lose her eye I know it is because that is what Gracie and those around her need to become the best they can be. He really does know what he's doing. And He loves my girl more than I can even comprehend. When I remember that, I know that no matter what the outcome of tomorrow is everything will turn out just marvelously.

Stephanie

Relay for Life- A Second Go

2009-05-15T17:47:00.004-05:00

Gracie getting her celebratory "Way To Go Kickin' Cancer's Butt!" volcano at Rainforest Cafe. Boy is she EXCITED!! In fact she didn't want to share with anyone because it was special for her.

Grandma treated everyone to a special dinner when she found out that Relay had been postponed.

We got news a couple of nights ago that Relay for Life in Cedar Park has been rescheduled for Friday May 29 at the same time and in the same place. The problem is we won't know if we can attend it until May 22 after Gracie's EUA as the 29th is a possible surgery date if that is what is required. So we hope we can make it so that Gracie can walk in her first survivors lap with all of her friends cheering her on, but we'll let you know after the 22nd if it's going to happen.

Also the survivors dinner has now been changed to a lunch at 11 am on Saturday May 23rd at the Sheraton Austin Hotel 701 East 11th St Austin TX. We also don't know if we'll be make it to this as our older two girls are in a swim meet and parents are required to volunteer at it. Maybe they'll make an exception for us under the circumstances. But then we may want to ask for an exception if we can't make it to the next weeks swim meet because Gracie needs surgery too. How many exceptions can one family request, especially when the swim meets require volunteers to run smoothly? Oh well, we'll know more next week and we'll let you know what our plans are when we've made them.

We did go out and celebrate with all the family that had flown in on May 1, the day Relay was originally scheduled. James took the day off school and we pulled our oldest daughter out of school and headed to San Antonio. We went to Sea World, did the River Walk and had a really nice dinner at the Rain Forest Cafe while we were there. Gracie had a blast and we all did our best to make it a special day for her.

Stephanie

2009-05-11T07:54:00.002-05:00

I just thought I'd better write so that you can know we're still alive. Basically right now we're just waiting. We still have no idea for when Relay for Life will be rescheduled, perhaps I'll send out some emails this morning to find out about that. It was a disappointment to have it postponed, but we know we still have a lot of people who want to come out and support Gracie in her survivors lap. I'll let you know when we do.

Gracie is scheduled for her next EUA on May 22. As you know it is really important that her eye is stable on this next exam if we want to keep her eye. We've been praying for a miracle, but know that the Lord has a plan and he knows what she really needs in life. So whether she keeps her eye or not we know that the Lord loves her and is watching out for her. But boy do we hope she can keep that eye.

So sorry there isn't much to report, but as I said we just wanted you to know that we were doing okay and that our blog wasn't dead.

Stephanie

Fwd: RELAY POSTPONED

2009-04-30T21:24:00.002-05:00

I just thought I would pass on a little bit of important but unfortunate news. It is from an e-mail that we received a little earlier today. It is very disappointing to say the least.

James

Hello,

I know everyone was pumped up and ready for Relay; however, the Leander Independent School District has made the decision that Relay must be postponed due to Swine Flu concerns.

DON'T LOSE YOUR MOMENTUM - WE WILL RELAY THIS YEAR. Plans are being made by the committee to hold the Relay later this month.

STAY TUNED FOR THE NEW DATE and look at the bright side - Now everyone has more time to raise monies!!!!

Thank you all for your understanding.

2009 Cedar Park Leander Relay For Life is May 1-2, 2009

To register go to www.relayforlife.org/cedarparkleandertx

Our Pledge is to celebrate the lives of cancer survivors, to support those who fight cancer and to remember those we have lost. Our commitment will be symbolized in every step we take . . . each and every step . . . moving us nearer our goal, the goal of a cancer-free world.

American Cancer Society Relay for Life of Cedar Park/Leander

2009-04-26T14:50:00.005-05:00

Okay for all of you who live in the Austin area we'd LOVE to have you come and cheer Gracie on as she walks in her survivor lap in the Cedar Park/Leander Relay for Life. We plan on making it a party to celebrate all that she's accomplished and will yet accomplish. We're even having cake. So here are the specifics of the Relay. It's rain or shine, so no matter what the weather (hopefully shine!!) we hope to see you there:

Relay for Life of Cedar Park/Leander

Running Brushy Middle School

2303 N. Lakeline Blvd.

Cedar Park, TX 78613

May 1 - May 2, 2009

7pm - 7am

Here is the link to the school. It helps to select arial view when you get there:

http://maps.live.com/?v=2&encType=1&cid=E7D7ECAE37345A89!112

Opening ceremonies will be at 7pm with the Survivor Lap to follow and then the team parade (after the survivor lap and team parade is when we're having cake)

The Luminaria Ceremony will be at 10pm

Here is the description of the Luminaria Ceremony if you've never seen one.

"When the sun goes down, hundreds - sometimes thousands - of luminaria light the way under the stars and a moment of silence falls during a moving ceremony of remembrance. Luminaria are glowing bags that appear to be simply paper sacks filled with sand and candles, but every bag represents a life that battled cancer. The luminaria ceremony is one of the most emotional moments at Relay. It is a time to remember those lost to cancer, support those fighting cancer, and rejoice with those who have fought and won."

Luminaria are $5 each. If you'd like to buy one to support or remember someone you love you can call me, or they can be purchased through our Relay link on the right side bar. They also can be purchased at the Relay itself on Friday night.

Stephanie

Goodbye Dr. P.

2009-04-25T19:32:00.002-05:00

This picture is a little out of order but it was taken on Monday April 20. It is Gracie with Dr. P. right before she goes into her EUA. She's wearing her Harvard shirt which was given to her as a "YOU"RE DONE CHEMO!" present from Noah's family. Noah's dad is doing his post doc at Harvard. We're sure grateful for Dr. P and think she's absolutely wonderful. We'll miss seeing her but are confident that we're in really good hands with Dr. Gumballs.

Baytown Relay for Life

2009-04-25T18:12:00.005-05:00

The Storm Troopers and a couple of Jedi made an appearance at the Baytown TX Relay for Life which is the largest Relay in Texas.

The retinoblastoma girls. Gracie you all know on the left, is standing beside Leah and then Maycie. Gracie is the only one of the three who is still in treatment, the other 2 have been cancer free for several years. They all have the genetic form though and as such are highly susceptible to future cancers. This is why we need to find a cure for ALL cancers. This is why we do things like Relay for Life. These are such precious little girls and we want to keep them safe from this horrible disease. On the far right is Maycie's best friend who walks the relay with her. On the far left is Gracie's 5 year old sister.

James and I are occasionally hit by waves of spontaneity. Yesterday was one of those days. We decided at about noon that we really were going to go to the Relay for Life in Baytown TX that we'd already decided that it would be too difficult to make. Why would we want to go to a Relay that is 4 hours away when our very own Relay was only 1 week away? 2 very good reasons. Their names are Maycie and Leah. Maycie is a 7 year old survivor of bilateral retinoblastoma and Leah is a 5 year old survivor of unilateral genetic retinoblastoma. We have never met face to face with any other families who have experienced this disease. Although we are really good friends with Noah's family online and I've "spoken" online several times to Maycie's family as well. But we knew that Maycie and Leah would both be participating in the Baytown Relay and we really wanted to meet with them and talk with their families. Especially now when we're having to seriously consider the possibility of enucleating Gracie's right eye. Leah has had her left eye enucleated and Maycie has had both of her eyes enucleated. I wanted to see children face to face that have prosthetic eyes (I've seen hundreds of pictures) and I wanted to talk with their mothers about their experiences.

So we pulled our 7 year old out of school for the afternoon and our whole family went to Baytown. We are so glad we did it. Talking with Brandi and Angela, the mothers of Maycie and Leah, was so therapeutic for me. Seeing Maycie and Leah and how wonderfully they are doing and that they're still just typical little girls who are absolutely beautiful was so therapeutic for me. It really was just a salve for my soul meeting with those two families. Originally we were just going to go cheer them on but it ended up that Gracie walked in the survivor lap with Maycie and Leah. My eyes only got teary once. I expect I'll be a mess next week at our own Relay with our family and friends there too. I'm so proud of Gracie and how well she's handled everything that's been thrown at her since August. It was fun to walk around with Maycie as it seems that she's quite the little celebrity at the Baytown Relay for Life. I believe this is her 5th Relay and her story is quite heroic. She is completely blind, but she is CANCER FREE!!! And I was so completely impressed by what a wonderful little girl she was when I talked to her. I look forward to the day when we can say that Gracie is cancer free too.

Again, we're so glad we went and had this wonderful experience. It was worth the 8 hours on the road yesterday and the really late night. But we made new friends, friends who understand what it's like to live with this disease and that's invaluable. It was so much fun. It's made me even more excited for our Relay this Friday night. We hope we'll see many of you there to cheer Gracie on that night. We really do appreciate your support.

Stephanie

EUA #9

2009-04-20T21:19:00.002-05:00

Gracie is such a trooper. It was fun to see her so happy for most of the day today. We woke her and the other kids up early to go to Houston. She had an EUA where we would meet with Dr. P and her new ocular oncologist, Dr. G (she calls him Dr. Gumballs). We have heard great things about Dr. G and were excited for the transition, though we really enjoyed Dr. P and will miss her. Anyway, we got there and they were ahead of schedule. Gracie walked back with the medical team at about 11:30AM, 45 minutes before her scheduled appointment time. We saw Dr. G and Dr. P afterwards for our usual "debriefing."

The great news is that the new tumor found last week in the right eye was responding well to treatment and the two tumors in the left eye were doing fine (one is still flat or dead, while the other is slowly dying and importantly, it is not spreading). However, there were a couple of new vitreous seeds in her right eye. This would indicate new growth of tumors. The large tumors near the optic nerve have not changed and Dr. P even said they were probably retinocytomas (old dead tumors) and may never grow, but there appeared to be two previously unseen tumors growing in the temporal (toward the outside of the head) part of the eye. They were previously unseen because either they are brand new or they had been hidden by the numerous vitreous seeds in that area. So Dr. G wants to see us again in 3 to 5 weeks and see if those are growing. They are far from the optic nerve and so there is little risk of them spreading outside of the eye. If they are seen to have grown in the next month, than that would mean that we need to take another course of action.

Since Dr. G does radiation for retinoblastoma patients we asked what options we had. He told us that in Gracie's case the next best option is probably enucleation of the right eye. Radiation carries many risks of future cancers and problems with development in and around the eye. Since Gracie has little risk of losing vision in the left eye, Dr. G feels the best option is to not attempt radiation treatments and risk the associated problems by enucleation. We asked some pointed questions regarding how this would happen and when, assuming the worst. Dr. G told us that if there was tumor growth next month, he would recommend enucleation within a few weeks. The enucleation would be more complicated than some, as Gracie's injections behind the eye, have left scarring in the tissue. If Dr. G did the procedure Gracie would need to stay in Houston for a week after the surgery.

While it is not the news that we would have liked, we continue to hope and pray for good results in a month. We would love to see no growth every month and thus preserve her eye. Her vision is so good and the tumors are contained at present. This makes thinking of enucleation hard. However, we know the long-term risks of leaving tumors growing in her eye as well as the risks of radiation. We are grateful to the care and support the medical staff have all given us. We are grateful for their diligence and care in treating her. We continue to pray that we will do what is best for Gracie. We will do everything we can to protect her going forward.

Thank you all for your prayers and support. We do really appreciate it and think that they have helped enormously!

GENETIC CLEARANCE!!!!

2009-04-17T14:26:00.004-05:00

We just found out today that all of our family, with the exception of Gracie, have received genetic clearance for the RB1 mutation! Meaning that no one but Gracie carries a mutation on their RB1 gene! So our kids can now stop doing exams under anesthesia every 3 - 6 months. This means that all cousins are also cleared of a genetic risk and don't even need to get their own genetic testing done.

However all children still need to continue to do routine eye screening. It's easy, in infancy children need their eyes dilated and examined, this can be done by an optometrist. It's painless and quick. The guidelines set by the Canadian Association of Optometrists is to have the eyes examined:

1. First visit at 6 months

2. Second visit by 3 years

3. Before the first day of school

4. Every year thereafter

Of course if you have any concerns in between SEE YOUR DOCTOR!!!

There are lots of potential problems that can be identified through these exams. Cancer is the least common. Most of them are very treatable, if not reversable.

There is a program promoting early vision screening in infants in the United States called InfantSEE to learn more about it check out their website:

http://www.infantsee.org/x3423.xml

InfantSEE recommends eye exams by an optometrist at 6 months, 2 years and 4 years. They are trying to encourage pediatricians to recommend these exams by optometrists. Now I know that InfantSEE is run by the American Optometric Association, but it's also thoroughly endorsed by ME! A mother whose dealt with this. The eyes are dilated and the retina is thoroughly examined in these exams. Get it done!!! Gracie is a sporadic case, 90% of RB cases are! It's rare, but it still happens. Almost all cases of RB, where there is known family history, are diagnosed in stories almost exactly like Gracie's - when the cancer has grown so much that it is actually visible through the pupil. If it was diagnosed earlier than the impact it would have on their vision would be significantly less. More eyes and lives would be saved.

The InfantSEE site has a doctor finder on it, so you can find an experienced provider who is close to you.

!!!!GET YOUR KIDS EYES DILATED AND EXAMINED!!!!

Stephanie

What's Up With Gracie?

2009-04-11T14:05:00.002-05:00

It's time to make a post to let you know where Gracie is in her care. Normally she'd have gone to Houston last week for her EUA as that would be keeping with her 4 week cycle (it should have been April 2). However this month the Retinoblastoma Center of Houston goes live. As such our schedule is getting a little mixed up. Gracie's care is getting transferred from Dr. P a pediatric ophtalmologist at Texas Children's to Dr. G an ocular oncologist from MD Anderson Cancer Center. Her care will still be provided at Texas Children's but now 4 facilities in the Texas Medical Center in Houston will be collaberating resources to make sure our little retinoblastoma kids are receiving the very best care. Dr. P and Dr. G had to coordinate surgery schedules as they want to see all the rb kids together for the transfer of care. This wasn't able to be scheduled until April 20 which is when we'll head to Houston for the next EUA. I was a quite uncomfortable with the wait as this will be 6.5 weeks since her last EUA and there was new growth on the last exam. But I was able to communicate my fears with Dr. P. She said she was comfortable with the wait, but if I wasn't then she'd try to get Gracie in earlier. We would still have to make the April 20 appointment to see Dr. G for the transfer. Really I just wanted to make sure that she herself was comfortable with this date, and not that it was just a scheduler who put us in that late. There is some degree of trust that has to be put in your physicians as it's their expertise you rely on. We're putting Gracie's life and vision in her hands and those of Dr. G's. We have no other choice, and we're glad that we have access to such wonderful physicians with who we can feel confident in their judgement.

Stephanie

This is the press release about the Retinoblastoma Center of Houston

http://www.bcm.edu/news/item.cfm?newsID=1371

Gratitude for our wish trip

2009-04-05T19:34:00.004-05:00

We just wanted make a special post to sincerely thank the Make-A-Wish foundation, Give-Kids-the-World and everyone else that made our trip possible. We were thrilled to find out (from the Make-a-Wish foundation website) that Gracie's wish had been adopted. We are not entirely sure what that entails as we have never been told who adopted her or what they did in particular. We probably will never know who it was but we are grateful no matter what. It just goes to show that there are lots of people that really love Gracie. So many people have helped Gracie and our family in countless ways, I doubt whether anyone will really know how thankful we are. It is amazing how wonderful people truly can be.

The following three paragraphs are from the Make-A-Wish website:

http://www.centralandsouthtexas.wish.org/adopt.htm

Adopt-A-Wish^®

The Adopt-A-Wish program was created to allow professional and community groups a chance to play a significant and very personal role in the wish process. A company, employee group, professional or civic club, or group of friends can adopt a wish. View our current list of pending wishes.

As adopters, you can be as active in the wish as you'd like. You can meet your special wish child. You can see them off at the airport or be part of the team that delivers that computer they've been dreaming about. You can make magic happen in the life of a child who hasn't been feeling very magical lately. You will get to see your dollars at work. You will get to feel the true joy of giving. You will make a dream come true.

It costs an average of $5,000 to grant a magical wish. With your help, we can send Bobby and his family to Disney World, buy Rhonda a home computer, allow Jimmy to meet Michael Jordan, or let Jennifer be a ballerina for a day.

Pics from Gracie's last day at Disney

2009-03-29T22:09:00.002-05:00

Gracie loves the Little Einsteins so this is one of her highlights. They were so good to let Gracie spend a fair amount of time with each of the characters and she loved it!
This is Gracie with Prince Caspian from Narnia. The conversation went something like this-

Prince Caspian- Hello, princess. What is your name?

Grace- Gracie

PC- And where are you from?

Grace- Texas

PC- It is so nice that the Princess of Texas has come to see me!

Grace- I am not the Princess of Texas. I am Gracie.

PC- Well you look like a Princess, Gracie.

Grace- I am not a princess. I am Gracie.

They continued and spoke about the other Texan princesses (Gracie's sisters) but Gracie was insistent that he call her Gracie. It was kind of funny.

Prince Caspian was amazingly nice and this was the highlight for Gracie's oldest sister!

Annie (the Little Einstein on the left) is Gracie's favourite. She was so excited to see her!
This is Gracie on Splash Mountain. It was one of her favourite rides. This was her expression for much of the 10-15 minute ride. The first time she rode it was without me and when she found me after she ran up and excitedly said, "Dad are you ready to get wet! Let's do it again!" She was soaking wet in her beautiful princess dress but wanted to do it all over again. I did go again with her and it was awesome!
This is Gracie riding the Tram on the way to our car on our last night in Walt Disney World. She was still excited but tired. It was a wonderful vacation!

Gracie's Deletion

2009-03-26T21:59:00.002-05:00

We're still planning on putting up more pictures from Gracie's Wish Trip, but right now I just need to update you on the less fun side of this blog. Yesterday our whole family drove to Houston to get genetic testing done so we can determine if we are at risk for developing retinoblastoma (the kids) or possibly having more children with the mutation (James and I). Now that we know where Gracie's mutation is it makes it much easier to test the rest of us because they know exactly where to look. I'll write exactly what the lab report says about Gracie's mutation, which actually is a small deletion. This way if you have a really good knowledge of genetics you'll know what I'm really talking about. Otherwise it's just blah, blah, blah.

"Quantitative multiplex-PCR, long range-PCR, and sequence analysis identified a deletion mutation called g.50965_59649del8685 in DNA from Grace's blood sample. This mutation is a deletion of 8.5kb of DNA on one allele of the RB1 gene. The deletion starts in intron 6, deletes exon 7 and extends to the beginning of exon 8 of the RB1 gene, destroying the exon 8 splice acceptor site. The deletion is expected to cause out of frame skipping of exons 7 and 8 in the mRNA transcript. This mutation is highly likely to lead to retinoblastoma."

So James and I were tested to determine if we carry this mutation and passed it on to Gracie. This is unlikely. All of our kids need to be tested because even if James and I are negative it is possible that we have a germline mosaicism. This means that we don't carry the mutation in all of our cells but we could produce multiple eggs or sperm that carry this mutation. Our other 3 kids who needed to be tested were somewhat terrified at the prospect of getting their blood drawn for the test, but in the end I think they did pretty well. Our oldest daughter who is 7 didn't really fight but because she was the last kid to get her blood drawn she was pretty nervous by the time she got in there. In fact she looked quite green. It wasn't until this morning that we decided that she was fully recovered and able to go to school.

While we were talking to the geneticist I had a couple of questions that we got really good answers to. My first question was why when Gracie has already developed 7 tumors in her eyes are her odds of developing other cancers only 51%. Not that I think that's a low percentage it's ridiculously high but she's already developed 7 separate tumors, it's not like they've spread and started to grow again. If this is the case why doesn't she get tumors all over her body all the time (at least in the cells related to the RB1 mutation). The answer is this. Your bones, and lungs, and most other areas of your body have several genes that are required to mutate before cancer starts to grow. So most organs, tissues etc. have several genes (5 or 6) there as a defense mechanism. The retina on the other hand only requires one gene to mutate in order to have a tumor start. And because one of those alleles already as a mutation in it in Gracie's case the odds are very likely. So that's why she's developed seven tumors in just 3 and a half years of life.

It's nice to know that the body has so many defense mechanisms in it. DNA is mutating all the time. Some mutations are genetic like Gracie's, but others are brought on by environmental factors. We can't do anything about the genetic mutations. But knowing they're there is a really powerful tool. We do however take as much control of the environmental factors as possible. This is why we've got Gracie a swimsuit that covers so much skin (shorts and long sleeved shirt). This is why she wears sunscreen with SPF 85 and a hat. This is why it's important that she eats a really good diet full of lots of fruits and vegetables and only limited meat. This is why she can never ever smoke, or even be around people who smoke (besides the fact that it's stinky and darn right nasty). We want to stomp out every possible environmental factor that we can. We love our little girl, and all of our other kids as well and want to take as good of care of them as we possibly can.

Stephanie

We're Home

2009-03-22T21:46:00.002-05:00

We just wanted to post a couple of pictures really quick and let you know that we got home safe and sound from WDW. We had a blast!! Between our two cameras and James' sister Nikki's camera we have around 1200 pictures documenting our trip. We plan on doing a more detailed account of our trip, but right now we're still too tired. We hope these pictures will be enough to let you know that we absolutely loved this vacation. We learned that our girls are all roller coaster junkies. The girls also enjoyed walking around the Magic Kingdom dressed in their princess outfits that my mom had made them. Talk about a good grandma. She even got special sparkly material to do the dresses with, which was a particular hit with Gracie who was Belle. Our other girls were Jasmine and Ariel in her wedding dress. Hopefully we'll get the rest of our updates up soon.

Stephanie

We are on the plane!

2009-03-15T19:40:00.002-05:00

The kids are so excited. If I had a dollar for everytime the asked if we were almost there, I could go to Disney next week too. And we are still not in the air

Answers to a couple questions

2009-03-14T21:10:00.002-05:00

A few people have commented that they would love to send Gracie something. I really do appreciate your love and willingness to give Gracie something, however, I am uncomfortable distributing her address via the blog. Anyone is free to contact me via e-mail (through my profile link in the right hand column of this page) if you have any questions regarding this.

Secondly, there was a comment regarding the costs of one unit of platelets. After reading that comment I realized that I was not as clear on a recent post as I should have been. I do keep detailed records of the bills that I receive from medical providers. However, I do not request bills from all of Gracie's appointments. For example, we went to the cancer clinic quite often for check ups or transfusions. These appointments required a $30 copay, per our policy. We paid the copay at each visit and never received a detailed statement from them for anything that was done. Similarly, I rarely receive statements from our pediatrician, ophthamologist and blood clinic. Sometimes the hospital does not send a statement if we pay the copay upfront. I know that my policy requires a copay though, so I am willing to pay that. If there are additional charges, I will not pay them until they provide a statement of charges.

So I guess that is the long winded way of saying that I do not know what the charge for a unit o platelets is. I would love to know as well. When I started this blog, that is one of the things that I really wanted to be able to tell others. I wanted to be able to allow them to estimate the future costs. However, that is not really possible because of all the differences in insurance policies. I keep track of my costs and I was happy that there was a maximum out-of-pocket expense on my plan. When that maximum was reached (within 2 months of diagnosis), I realized that we still were required to pay copays. The copays are not included in the maximum. Each month the copays were $400 to $600 after our maximum was reached. So even with an insurance policy where we supposedly have our total payments capped, we continued to pay much more than I had ever anticipated paying for healthcare.

Having said that, we have been richly blessed and humbled by the support that has been offered and given. It has been amazing to see how many people really love Gracie!

Getting Excited!

2009-03-14T15:20:00.002-05:00

We've spent this morning finishing up packing, and then we took our dog Elmo to the kennel (where according to our 5 year old he's going to have a party with the other dogs while we're gone - good to know we'll all be having a good time this week). Now that that's out of the way the girls haven't got much to do to distract them from thinking about our trip. Every 15 minutes they ask "How much longer until bedtime?" Really this is better than Christmas, except we'll have the same problem that once they do go to bed there will be no way that they'll actually sleep. We plan on taking lots of pictures so when we get home we'll report on our trip!

Stephanie

Mutation Found!

2009-03-09T16:03:00.004-05:00

Okay. We haven't actually met with the geneticist so James and I haven't found out exactly where this mutation is, but the lab found it and has sent the report off to our geneticist. I called the lab today because I started worrying that the blood had been lost before it got to the lab. It seems like this has been pending forever. But the lab (Retinoblastoma Solutions in Toronto) told me that they'd found the mutation and that the report has been sent. So our appointment with Gracie's geneticist which is scheduled for the end of March looks like it's a go. Although we're trying to get it moved to the same day as her EUA so that we don't have to make 2 trips to Houston. Finding the mutation is great news because now we can get our other kids and their cousins genetically cleared so that they don't have to continue with routine screening under anesthesia.

Stephanie

Gracie's Kick-off party

2009-03-07T20:20:00.002-06:00

We all went to Gatti Land for Gracie's kick-off party. It was a lot of fun. There were two volunteers from Make-a-Wish that gave us info on our trip. Gracie was given a few gifts and we all had lots of food and played lots of games. Gatti Land is a place with lots of arcade and midway like games along with all-you-can-eat buffet (mostly pizza). We told the kids we were going on an adventure. They thought we were headed for a hike. They were quite confused until we were actually inside the party room at Gatti Land and saw Gracie's name on the door.

They gave us plenty of tokens for games and everyone had a great time. Gracie was disappointed that she could not go on the bumper cars with her older sisters (she is not quite tall enough yet), but everyone found something they loved to do. We spent enough time in the game room with all of the music and lights that I have a headache now.

Everyone is so excited for our departure in 8 days! I am not sure how everyone will handle waiting that long now.

Gracie pics from past month

2009-03-07T09:48:00.004-06:00

Beautifully bald!
Gracie from her most recent trip to the cancer clinic. Her hat was a hit!!
Gracie eating breakfast one morning!
This is Gracie and her new swim suit. It has added sun protection for our little girl!
This is Gracie trying to convince Elmo (our dog) to be a space dog. The drum made a perfect helmet according to Gracie. She's seen way too many previews for the movie Space Buddies.

Gracie's 8th EUA- the Good, the Bad and the Beautiful!

2009-03-05T22:21:00.006-06:00

Gracie underwent another EUA today. Here is my quick summary of today's results.

The Good-

The left eye has two tumors. One was thought to be dead and completely "flat" last month. This month it looks exactly the same so we are pretty sure it is all taken care of. The second and bigger tumor has responded favorably to laser treatments and continues to shrink. One or two more laser treatments are in order to get that tumor flat against the retina (all dead).

The pre-existing tumors in the right eye and the vitreous seeds have not grown and her vision in both eyes remains unimpaired.

In four weeks we will meet both Dr. P and Dr. G for the switch to Dr. G as our primary pediatric ophthalmologist for Gracie. We are excited about that and found out that Dr. G will meet with us on Fridays. Fridays are typically better than Thursdays so that is good from a logistical standpoint.

The Bad-

The tumors in the right eye have not shrunk and another tumor was found in the right eye. The tumor is small and in the periphery of the eye. It was treated with laser and Dr. P said that if it is not flat by the next appointment (four weeks from now), she will use cryotherapy and get rid of it once and for all. It is disappointing to find new growth however the growth seems like it will be relatively easy to kill and is located far from any location that would influence vision or spread outside of the eye (good news!). Dr. P pointed out that this is the area where we would expect new growth in someone Gracie's age. The cells in the periphery of the retina are the ones that are still maturing, so they are the ones susceptible to mutation. The retinal cells toward the macula have matured and so will not start new tumors (that is certainly our hope).

This does not impact any future plans, yet. We are still just on a holding pattern, waiting to see if the tumors grow when she is not getting chemotherapy. The next step will depend on Dr. G's assessment in four weeks and how the tumors respond. Hopefully we continue to see no growth in existing tumors and shrinkage in the tumors being treated with laser treatments. We will continue to monitor the eyes and act when changes occur (like the new tumor today that was hopefully effectively treated by laser therapy this afternoon).

And the Beautiful!

Gracie loved wearing her Rock Star sunglasses in the recovery room and eating her red popsicle. The nurses there know her pretty well and commented on her new hair cut and her sense of style! Dr. P also told us a funny story about her when she met everybody right before her surgery. She had been talking all morning about how excited she was to see all her friends at the hospital. When she left us to go to the operating room, she seemed eager to get to see everyone. Dr. P said she got into the room and looked around and said, "These aren't all my friends from the hospital." Dr. P said she seemed happy to see everyone nonetheless but thought it was cute that she had been looking for some specific friends and had obviously not found them there.

Gracie was a bundle of energy after her surgery and into tonight. We left this morning at 7AMish and got home at 9PMish. Some great friends watched the rest of our kids for us. We are so appreciative of all the love and support we have received from family and friends. We pray for Gracie to keep both her eyes. We acknowledge how blessed we have been to have such a wonderful cheerful little girl throughout all of this. Her blood counts today were very good. Her ANC was comfortably within the normal range for a child her age! She has recovered so well and avoided so many illnesses, even when her immune system was so very compromised. We hope for the best and especially that those medical professionals who care for her know what is best. We have been so blessed to work with such good and caring people throughout all of our visits for Gracie's retinoblastoma treatments. I think I could go on and on. We truly do have so much to be thankful for.

Thank you all for your love and concern for Gracie and for our family. It has really been felt and is appreciated!

Waiting for the next step

2009-03-03T20:22:00.003-06:00

Thursday we have an EUA scheduled to take a look at Gracie's eyes. This could be the last time we see Dr. P before moving to a new doctor. We are excited that this will only be a day trip to Houston instead of three days of chemotherapy! Hopefully after meeting Dr. G this next month we will have a better idea as to the future game plan for Gracie's treatment. It would be nice to know the options that we have anyway.

The kids are also really excited about DisneyWorld. In two weeks time we will be in the midst of our Make-A-Wish trip to Florida. The girls are ecstatic. Gracie is excited that we are going to go swimming and eat ice cream! I am not sure why we need to go to Florida for that part but that is what she seems most excited for. We have not been to the cancer clinic or had blood checked for a full week now! It has been great for me but Gracie does miss her friends at the cancer clinic and at the blood clinic.

Gracie is doing so well. We are so appreciative of the many prayers and love that has been given to us. We have been richly blessed because of it.

Counts

2009-02-24T14:34:00.001-06:00

HgB - 10.1

Platelets - 43

ANC - 442

Yay!!! They're on the way up!

Counts

2009-02-23T13:50:00.001-06:00

HgB 10.4

Platelets 23

TWC 3.8

ANC 418

So now the question is are her counts on the way up or on the way down still? We have to check again tomorrow to determine that.

Checking blood and hospital billing headaches

2009-02-23T10:23:00.005-06:00

This morning I ran Gracie up to get her blood checked. We are waiting on the results now but Gracie had a great time. She met a little friend that was also getting blood taken. They spent 10 or 15 minutes coloring together in the waiting area. Gracie had also drawn a picture for her "friend" (Kerrie sp??) at the blood clinic. Kerrie is often the one that draws Gracie's blood but she is also the one that always gives Gracie a prize or has conversations with her while she is waiting. We also took some rice crispy squares to the staff there, as we are not sure how much longer we will need to be going there and they have been so good to us. In the mornings, Gracie often asks if we are going to the blood or cancer clinic that day. She is really excited to see her friends all the time. Anyway, things went pretty smoothly and we had a fun time again.

After I got home, I decided to call one of the hospitals that we have been dealing with about a recent bill they sent. They were trying to bill me $170 when I had already paid the last statement they sent me in full (all $1,600). I should back up here and remind you that I am an accountant. Accountants tend to be detailed about money and generally have a basic understanding of billing practices. I am no exception to that rule. In fact, I make it a rule to not pay medical bills unless I have detailed bills regarding the service performed, dates, etc. I keep a spreadsheet of how much they billed me, how much they billed my insurance, what went to deductible, copay, etc, how much they tried to charge above my insurance companies established limits, among other things. Often this seems like a bit of overkill as there is no real way to measure that they are charging you a fair rate. It is not like I could just go to the hospital down the street and ask for a better room or a better price for chemo drugs or a different specialist in retinoblastoma. However, I keep the information as a matter of principle and it has paid off a couple of times at least.

Anyway, back to my story. So I called the 1 800 number for the hospital and started talking to a billing clerk. I told her that I had questions regarding my most recent statement showing a balance of $170. I explained that I had paid $1600 on Feb 2 to clear my entire account (at least the portion that they had billed). She replied that I had paid $30 on a $200 account and so had $170 left. I assured her that I had the bill detailing that in front of me but that my most recent statement had $1,600 (including the $170 in question) and I had made that payment. Again she told me that I had paid $30 so had a $170 balance. I explained that there were several service dates on my most recent statement and that I had paid the amount in full and the hospital had applied my payment to the accounts but must have different amounts due than my bill showed. Again, I was wrong as I had paid $30 so had a $170 balance.

So I asked that she walk me through the service dates that I had paid or not paid at the hospital. She proceeded to tell me about several recent dates that they were waiting on my insurance company for collection. She still seemed determined that I had only paid $30 and there was no record of $1600 payment. Then she put me on hold for a bit and came back asking more questions about my account. I gave her the information and she seemed thoroughly annoyed but started reading the accounts that I had cleared for the last six months. The second service date was an amount for $170 (shocking- sarcasm definitely intended) but I waited until she read all of my accounts and payments. The payments surprisingly totaled $1,600 and were made on the same day (again shocking).

Then she said, "So you owe $170 because you only paid $30 on the December 4-6 service date where the insurance company said your deductible was $200." I ignored the fact that the $200 was a copay, not a deductible, though I think that distinction should be important for a hospital billing staff member but I had previously tried to explain it to her without much success. I explained that I had never received a statement or bill for the earlier service date, where I had owed $170. If she could kindly send a statement for that date, I would be happy to discuss with my insurance company how they should be paying that amount (I had already paid my $100 deductible for that day). I also asked if she would please apply the $170 to the December service date for which I had received a statement, then this would clear up further confusion. She hesitated but eventually agreed to send me the detailed statement for the $170 service and reapply the payment amount.

I still think that she probably does not understand why I called however, it was a testament to me that I should not just blindly trust any hospital administrative process with telling me how much I owe. A couple of weeks ago, I called a different hospital about a $160 charge that I did not understand. This lady was very friendly and tried to understand why I was confused. After a 10 or 15 minute discussion, she found out that the hospital had charged me twice for the same service and took the charge off of my account. So, while $330 is a small percentage of what my out-of-pocket medical expenses are for the past year, it still is better to not pay for something that was not owing to me.

As always, Gracie is doing marvelously through everything and we are grateful for the concern and prayers on our behalf. I am sure we will post again today with Gracie's blood counts!

A Budding Artist

2009-02-22T22:03:00.003-06:00

Perhaps y'all won't be as impressed with this as I am, but this is Gracie's very own lego creation of a dragon. She didn't use a model and no one helped her, she just knew it needed a head, neck, body, wings and tail and this is what she came up with. Pretty good for a 3 year old, if I do say so myself! She's the Little Einstein's number 1 fan and they talk about dragons in one episode. I think that's where she got her inspiration from. Maybe she's got a future as a famous sculptor, or perhaps just a job at Legoland : )

Sunday morning

2009-02-22T10:11:00.002-06:00

Gracie's counts from Thursday were fairly good for where she is in her chemotherapy cycle. Because of that we had to cancel an appointment to receive platelets on Friday morning. While this might seem good, it is kind of frustrating because, in all likelihood, Gracie's counts are so low this weekend that she should get a transfusion. The cancer clinic is only open weekdays so in order to get a transfusion today we would need to go to the hospital. The hospital is usually a longer wait, less fun for Gracie and more expensive for us.

Gracie is feeling great right now and we are having a hard time keeping her from bouncing off couches and running around the house. Hopefully she will be able to quietly watch a movie or play a game with her mom when I take her older sisters to church pretty soon.

We (especially Stephanie) will continue to monitor her for signs of low platelets and the on-call oncologist is ready to admit us to the Children's hospital should be need a transfusion. Hopefully all goes well and we find that her counts are going up tomorrow and she is done with transfusions!!

Thanks for all your concern and prayers. We have been truly blessed and know that it is, in large measure, because of your faith and love.

Today's Counts

2009-02-19T12:08:00.000-06:00

HgB - 11.1

Platelets - 54

TWC - 3.0

ANC - 450

A Cute Story

2009-02-18T14:10:00.003-06:00

Due to Gracie's high predisposition to skin cancer she's not allowed outside without sunblock on (SPF 85 - who knew they even made it that high). Last night her dad went to run an errand. Gracie asked if she could go too, but since it was dark and bedtime James had to tell her "Not this time." James left and Gracie ran into my bathroom. She came out a few minutes later and had smothered herself in her sunblock, she was very anxiously asking "NOW can I go with Daddy!" As if the lack of sunscreen was the only reason she wasn't allowed to go. I guess she hasn't realized that you don't need sunscreen if there is no sun. She always has been her daddy's little girl though, and she loves to spend all the time she can with him. Funny how kids minds work.

A couple of transfusions

2009-02-17T11:46:00.003-06:00

Yesterday James took Grace to the cancer clinic to get her counts checked. They were:

HGB = 7.1

Platelets - 12

ANC - 1500?

I'm not sure how the ANC can be as high as it was, but that's what they were. Last time they went up they said it was the tail end of the neulasta injection giving its last hurrah. We'll see what they are on Friday. So needless to say Gracie got a transfusion of packed red cells as well as platelets. Much to my surprise they were on their way home at 5:15. She seemed to do well with the transfusions. Although when she got home and was so wired that she wouldn't go to bed I was wondering why low hemoglobin is such a bad thing. I kind of like lethargy, especially at bedtime. Eventually she did fall asleep though. She's scheduled for another platelets transfusion on Friday. Hopefully this will be her last!

Update on Gracie's treatment

2009-02-15T13:28:00.003-06:00

Gracie has an appointment at the cancer clinic in Austin, TX tomorrow scheduled. We are planning to have a platelet transfusion done at that time. They will check her blood levels and see if anything else is needed. The last couple of days we have noticed increased bruising and Gracie has been a bit more tired than usual. We continue to hope and pray that all goes well with this last round of chemotherapy. She is actually going to miss all of her friends at the blood clinic and cancer clinic each month. She talks about them often and asks when she can go back to see them.

I just thought I would take a little space here and clarify where we are in Gracie's treatments. 10 days ago we spoke with Dr. P in Houston following Gracie's most recent EUA.

THE LEFT EYE

We were thrilled to find that Dr. P saw significant improvement in Gracie's left eye. There have always been two tumors in the left eye, one small and one medium sized. Dr. P reported that the small tumor was "flat." This means that the cancerous cells are likely all dead and the tumor will not grow again. The area where the tumor was is scarred but it has not affected her vision. The medium-sized tumor showed significant improvement, in that Dr. P noted the coloration of the tumor changing and some reduction in size. Dr. P feels that the laser treatments are finally working and should continue to work to flatten and kill this tumor. Should the laser treatments not work or the tumor start to increase in size we will have to consider other options. Laser treatments for these types of tumors are really the least invasive and have the fewest potential negative effects for Gracie. So, up to this point, we have only used laser treatments (shining laser directly at the tumor to kill cells) and the global chemotherapy (IV chemotherapy drugs each month that attack replicating cells throughout the body- which would include cancerous tumors) on the left eye. We will continue to monitor that eye on a monthly basis and use laser treatments until the medium-sized tumor is gone. We hope and pray that these treatments will be all that are needed.

While I can not give you an exhaustive list of treatments available, should the laser treatments not work, some of our options include:

Cyrotherapy- the use of extreme cold temperatures on the tumor to kill the cells. This would typically be done by getting access to the back of the eye and putting some sort of freezing agent on the back of the eye adjacent to tumor location.

Radiation plaques- a radioactive plaque would be placed on the back of the eye adjacent to the tumor location. This releases radiation to the concentrated area where it is placed and thus kills the cancerous cells.

Proton beam radiation- This is similar to laser treatments only using radiation instead of light and heat. Radiation is concentrated onto the tumors. Typical radiation effects a relatively large area around the target cells and has been shown to sometimes cause other cancers later in life for young retinoblastoma patients. Proton beam radiation results in less "fall out" for cells around the tumors and have shown great promise recently in treating patients. This technology is relatively new and not available everyone in the USA, however, Houston does do proton beam radiation.

Each of these treatments come with risks and benefits so will be considered carefully- if they are ever needed for Gracie. Dr. P does not do these three other treatments but has sent her patients to Dr. G in the past. We are fortunate that Dr. G will begin taking a leading role in Gracie's care sometime in the next couple of months. They are starting a new retinoblastoma center at the Texas Children's Hospital and Dr. G will be the head pediatric ocular oncologist. The timing seems perfect from our stand point and we have heard nothing but good things about Dr. G.

THE RIGHT EYE

Dr. P informed us that the right eye still has showed little to no improvement since the first time Dr. P looked at it. There remains large tumors on the retina and many vitreous seeds. While some of the seeds may have calcified (basically been killed) to some extent the tumors have neither grown or shrunk noticeably in the last 6 months. This is a bit of a quandary for everyone involved. There is a small chance that the tumors have stopped growing and will never grow again, given that no growth has been seen. If this is the case then the right eye can be monitored and left alone as it does not impact Gracie's vision. The seeds are not a huge problem in the short term but can cause problems and spread in the future (or they too could die and not ever be a problem). No one wants to remove her eye if the tumors are not growing and her vision is unimpaired but everyone wants to prevent the tumors from growing and leaving the eyes to cause bigger problems elsewhere. This brings many questions that we cannot answer until we see Dr. G and know what options we have. Dr. G is going to look at the right eye and let us know if there are any radiation treatments that are available that may help in her case. He will provide a his recommendations and then we will know what options are available. It is also important to see how the tumors progress over the next couple of months without monthly chemotherapy sessions. Whether the chemotherapy was stopping the tumors from growing or whether the tumors, in the right eye, had already stopped growing is unknown.

So basically we would love to see no future growth in the right eye and have to do no further treatments on that eye but to leave the tumors right where they are. This means regular (likely monthly) EUAs to check for growth. If no growth is seen then we would leave everything alone. If the tumors in the right eye ever start to grow then we will have to quickly decide how to proceed- radiation treatment, enucleation or some other option as yet undetermined. Because the tumors are so large and one is so near the optic nerve then it would be imperative to stop any further growth immediately. So our best option is that the tumors are dead in the right eye and we live month to month monitoring them to make sure they stay dead.

Gracie is doing remarkably well and we are blessed with the best family and friends that anyone would ever ask for. We have seen many little and big miracles throughout everything that has gone on and continue to hope and pray that Gracie will keep both her eyes. Thank you all for your continued love and support!

Today's Counts

2009-02-12T14:16:00.002-06:00

HgB - 9,2

Platelets - 68

TWC - 2.7

ANC - 702

Her bone marrow is definitely getting tired. To give you an idea of what the cumulative effects of chemo are on bone marrow I'm going to post what Gracie's counts were on this day after her Jan and Dec Rounds. Her ANC is taking the biggest hit from month to month, but the platelets aren't liking this any either. But the good news is that this is her last nadir coming up!!!!

January

HgB 10.5

Platelets -65

TWC - 4.4

ANC - 1800

December

HgB - 9.9

Platelets - 133

TWC - 4.6

ANC - 2700

Gracie's Take On Her Hair

2009-02-09T10:07:00.005-06:00

After about a week and a half of going back and forth between, should we shave it, should we not we bit the bullet. I was literally shaking when I went to do it and couldn't. James just went and got a chair and said "Come on Gracie, we're going to give you a hair cut." And that was all there was to it. She didn't fight, she thought it was pretty cool. She did mention once to James "Are you going to cut my hair like yours?" But she wasn't upset when she said it, she was just inquisitive. I think she thinks it's pretty great, no more having to brush her hair. Really what 3 year old girl wouldn't enjoy that? She's still absolutely beautiful and we were pleasantly surprised at how nice her head is shaped, we were kind of worried about that. She's been losing more and more hair everyday and because it was so thin any loss made a difference. That's why today we finally just did it. And we can rejoice in the fact that the chemo did the job and that Gracie is so incredibly happy no matter what happens. There's no keeping our Gracie down!!

Hair Cut for Gracie

2009-02-09T09:39:00.004-06:00

What do y'all think of my first job as a hairdresser?

Stephanie gets to cut hair all the time but this was my first go at it.

Isn't she gorgeous! (Even with the not-so-subtle reminder of retinoblastoma in the right eye.)

Home Again

2009-02-08T19:55:00.004-06:00

So how does it feel to be done chemo? Actually I have pretty mixed emotions. As I've mentioned before in the week preceeding the EUA I'm always nervous, usually starting Sunday night (she always has her EUA on Thursday). So I was nervous as usual, but it started a little early this time - maybe around Friday. But then after we spoke to Dr. P. about the EUA results the best descriptions for my feelings is giddy. I was so excited about everything being the last time. On Friday night James and I gave a cheer when they hung the last bag of chemo (I had fallen asleep by the time they took it down). I just thought that we only have to go through one more nadir, one more Neulasta injection, 3 more weeks of staying home from church and play group and all the other fun things we'd like to do, hopefully only 2 more platelets transfusions.

As we were walking out of the hospital Saturday morning tears started to form in my eyes in the hallway. By the time we got in the elevators they were running down my cheeks and by the time we got to our car I was full out crying. Here we are done chemo. 6 rounds ago I thought we'd be completely through with this cancer by the time we were done the chemo. And we're not. I know cancer will always be a part of our lives now, but THIS cancer was supposed to be gone by now. And we're really not planning on dealing with another one, but we know we'll always have to screen. But right now the tumors are still there. We still don't know what treatments we're going to do next. Are we going to do radiation? Dr. M. assured me that because the vision is still so good no one is in a hurry to do an enucleation for the time being, but it's still on the table. These are why the feelings are mixed. I felt a mixture of pure happiness and stress. I wish this was over, but it's not, so I'm trying to focus on the positive.

I still get giddy when I think about chemo being done. This morning I gave Gracie her very last Neulasta injection which is a huge deal because it burns like a son of a gun. She and I both hate it. We threw a mini party when it was done. Last night we had an end of chemo party and Grandma made us cinnamon buns and buns for desert and sloppy joes (have I mentioned how much I love it when family is here to visit). We plan on having lots of "parties" this month to celebrate the last of something or other. We've promised Gracie and our other girls a REAL end of cancer party when this cancer is truly gone, and we're getting excited for that and hope it won't be too far away. We're doing a "Go Away Cancer! Go AWAY!" cheer in our family, Gracie is getting really good at it. So we're going to continue being happy, continue celebrating that Gracie doesn't have to go through any more of this horrible chemo and the aftermath it causes and continue cheering loudly Go Away Cancer! Go AWAY!! And above all we'll continue to thank God every day for the many, many blessings that we have in our lives.

Stephanie

Chemo is done!!

2009-02-07T01:17:00.002-06:00

The last bit of chemo just finished for Gracie!! It is 1:15AM and Gracie is just going to get fluids for the rest of the night, no more chemo!! We are so excited. It has been hard to sleep knowing that this was Gracie's final round.
Hooray for Gracie! We will celebrate tomorrow by driving home and getting a good night's rest tomorrow night. Maybe on Sunday we will make a special treat to celebrate Gracie being done chemo, our friend Noah finishing radiation this last week and another friend Isaiah who just started chemo in North Carolina. All three events seem to be important milestones in their respective treatment plans!
Many thanks to you all for your support and love!

Day 2- Round 6 (Final Round of Chemo!)

2009-02-06T13:28:00.002-06:00

So yesterday we had our EUA scheduled at 11:15AM. They were a little behind but sent Gracie back at about 11:30AM. We spoke with Dr. P just after noon and were heading up to the cancer clinic just after 1PM. Gracie had been given morphine during the EUA to control any pain and so was quite drowsy most of the day. She slept much of the time in the clinic. We moved over the to the cancer unit at about 7PM. Chemotherapy started at about 11PM and continued for a couple of hours. Gracie did really well and was quite sleepy throughout. I woke up a few times to help her but I was quite tired as well. Stephanie seemed to sleep well.
For whatever reason the doctors had orders for Gracie to stop getting IV fluids during the night. This was fine by me because that would allow Gracie to move around without her IV pole the next day. However, after they stopped the fluids they had to hook her up again to get some Zofran (anit-nauseau medication). This seemed strange to me but I was not reasoning really well before 7AM. Gracie woke up at 8:30AM with an enthusiastic, "The sun is up and its good morning time Daddy!"
Gracie has been quite happy and perky ever since. She has eaten well and been happy to see all of her hospital friends. She has also enjoyed making crafts and watching Little Einsteins. Part way through the morning, one of the child life workers brought her a huge banner for the door. It says, "Congratulations Grace! Its your last hospital chemo." Gracie does not really understand it but Stephanie and I are really excited about it!
Things are going really well and we thank you all for your love and support.

Day 1- Round 6 (Final Round of Chemo!)

2009-02-05T17:27:00.003-06:00

This is a quick update- hopefully I will get a chance to update further later tonight.

We spoke with Dr. P today and got great news! The tumors in the left eye have responded well and we are going to continue treating one of the tumors with laser treatments while the second looks to be completely gone!

We have not seen any change in the right eye for the last six months so it remains a bit of a mystery. Thankfully the tumors in that eye have not grown. We will likely be meeting with another doctor, Dr. G, at MD Anderson in Houston, to see of there is anything he suggests and because he will be heading the new retinoblastoma center here at Texas Childrens. Next month Dr. P will still look at Gracie and treat her left eye and make sure things are not growing. Sometime in the next couple months we will at least consult with Dr. G.

We are excited about the progress today and thank you all for your prayers. They are working!

Friday's Counts

2009-02-02T19:52:00.002-06:00

Apparently they called and left a message on our voicemail with these results on Friday, but our voicemail isn't always 100% reliable.

HgB - 9.3

Platelets - 154

TWC - 3.6

ANC - 612

I'm kind of worried about the ANC as it's taking longer than usual to go up. They won't do chemo until her ANC is 750, so hopefully she's already there. When it starts to go up it seems to go up fairly quickly so it shouldn't be a problem.

Relay for Life in Lethbridge Alberta

2009-01-31T21:26:00.003-06:00

This is a portion of an e-mail that my dad sent me earlier today. I am posting it here for any that may be reading in the Lethbridge, Alberta Canada area and would be interested in supporting Relay for Life there. I hope you will all have a great time there and be able to raise lots of money to fight cancer.

We are looking for all who would like to spend a night together honouring Gracie in her fight against Cancer along with all the others who have to face this disease. The Relay for Life event in Lethbridge, Alberta is June 12 & 13, 2009. There is a $15 registration fee and you are encouraged to obtain pledges of at least $100. Grace's' Grandparents would be happy to organize the team. you may respond to smitrs@canada.com

Gracie pics and a big thank you to all!

2009-01-31T20:41:00.005-06:00

The first picture is one her mom took yesterday. The next three pictures are of Gracie today. She had a wonderful time playing outside in her swimming suit (Gotta love Texas winter). (The fourth one shows how much her hair is thinning out. Maybe next time you see a picture she will not have any hair left to see.) Then the final picture is from a few days ago. This is Gracie on my bed. That is her favorite place to go at night. She usually falls asleep there and then I take her up to her room.

Gracie is doing really well. In the week before round six things have gone quite well. She had her blood tested yesterday but we did not hear back on the results so they must have been fine. Gracie keeps talking about her friends at the blood clinic and says that she would like to go back there soon. I just want to tell her that it will be soon enough.

Thank you for all your support and love. I was reminded today of how much people cared as I went grocery shopping and used a gift card we had been given. It has been amazing to see how many people try to reach out in so many ways. We are grateful beyond measure for the anonymous "gas money" that found its way to our door before the first round, for the gift cards for Molly Maids, groceries, gas, etc, for the people that played secret Santa leading up to Christmas, for the "Santa" that dropped a bag of wrapped gifts for each member of the family a couple of weeks prior to Christmas, for the family members that have come each month and the family that have financially contributed to Gracie's care and our visits to Houston, for the cute hats that Gracie has received, the many gifts that Gracie and her siblings have received, the messages on the phone, e-mail and by mail, the kind neighbor just willing to talk and listen, the thoughtful books and quotes that have been shared, helping get my sister to Florida in March for Gracie's wish trip and the list could go on and on. It is amazing the way that people reach out to help others and I only hope that I can be as kind in return.

Thank you all.

Monday MRI

2009-01-29T14:06:00.003-06:00

Gracie went for a followup MRI on Monday morning. We haven't talked to a doctor since, but we have no worries about the results. They didn't do the MRI because they were worried about anything, more just because it's protocol and they want to make sure she's okay as she completes chemotherapy. She'll go for many more "routine" MRI's throughout her life. She did well at the MRI, they didn't use general anesthetic, but rather gave her a hefty dose of chloral hydrate to make her sleep (91.8 mg/kg). Boy did it work. She slept for a long time and then was grumpy for a few hours. She perked up right around bed time. Wouldn't ya know it. Actually she wasn't up too late, so we were really grateful.

We've noticed since the last chemo that Gracie's pupils have been unequal. They're reactive to light but the right eye is sluggish. Last week I called Gracie's ophthalmologist Dr. O. to ask her about this. I don't think she got the message until Tuesday morning when we got a phone call asking us to come in that day. (Yes, people like us are the reason why she has such long wait times some days) After she got done the examination she said she wasn't sure why the pupils are unequal, maybe it's the chemo? But she wanted to see us right away to make sure the cancer hadn't spread into the anterior chamber of the eye, which is one of the two ways that this cancer can exit the eye. She ruled that out, but boy are we glad she didn't tell us that she was concerned about that in the morning. It would have made for an extremely stressful day. As it was we were able to go blissfully (relatively) about our daily routines. I'm sure she had more angst about it than we did. Sometimes I really enjoy ignorance.

Gracie also had blood work done on Tuesday morning. The results were:

HgB - 8.5

Platelets - 92 (good thing because she bonked her head REALLY hard Monday night)

TWC - 3.7

ANC - 550

We're scheduled for her sixth and FINAL round of chemo next Thursday!!! We're pretty excited about that, but we don't know what to expect after that either. The cancer was supposed to be gone after 6 rounds and it's not. So where do we go from here? We've discussed several options including proton beam radiation, radiation plaques, enucleation and even just observing for a little while. Hopefully we'll know more by next weekend.

Thank you to those of you who have expressed interest in doing the Relay for Life with us. I'll try to remember who all said they wanted to join our team and send you invitations online. If I forget you don't take it personally it was a complete mistake. We still want you on our team! I believe you can sign up directly through our Relay web site (there is a link on the right side of the blog page), if not let me know and I'll send you an invitation. This year the Relay is having an 80's theme and so let me know if you have any good ideas of how to decorate our campsite or a team subtheme. Feel free to post any ideas you have. I've considered getting Atari's for entertainment, but I'm not sure if we'll have access to electricity. It'll be so much fun!

Gracie's home!

2009-01-25T16:04:00.004-06:00

Gracie arrived home at about 2PM from the hospital. It was much better than anticipated. She is happy and noisy. Her mom is tired and now trying to sleep. Her platelets were at 10 so she was given platelets but her other levels were high enough that whole blood was not given this time. Thanks for all of your care and concern!

A few pictures

2009-01-25T08:27:00.005-06:00

I realized that we have been kind of negligent with showing pictures lately so I figured I would give you a few here today. Gracie has gone with her mom up to the hospital today to see if she needs a transfusion. Hopefully they will make it home in good time. Anyway, enjoy!

This was taken this morning at 8AM as Gracie was heading out to the hospital with her mom. She told me that she was "going to see her friends and that her friends were going to do something funny for her." She clarified saying that they were going to make faces and have fun! I am sure that with Gracie they will have fun.

This was taken in Houston waiting for her EUA (January 8, 2009). This is in the afternoon and Gracie has not eaten since the day before. She is having a lot of fun playing trucks with me as we are the only ones left in the waiting room.

This is also from our last trip to Houston (January 8, 2009). Gracie found a rocking horse in the cancer clinic and thought it was pretty fun!

5 month anniversary

2009-01-25T00:12:00.005-06:00

Well, five months ago, Gracie was officially diagnosed with retinoblastoma. It was a week after we had visited with our friend and ophthalmologist, who had been the first to ever tell me about the disease. The time has gone by so fast in some ways and so slow in others. I have learned a lot about cancer, blood counts, insurance company practices, hospitals, medications, myself, the resilience of young children, etc. The list could go on forever. We have tried to be true to the purposes of our blog and share our experiences honestly and somewhat openly. We have heard from many who have found the blog and it has helped them, even in some small way. We are grateful for that, relatively early, feedback from some. It helps me to keep going. I have not been the best blogger of recent, but Stephanie has really helped to pick up the slack.

So as I look back over the past five months, I think that it has been a whole lot easier than I ever imagined. I thought that Gracie would hurt more. I thought there would be more vomiting, less sleep and more crying from and because of Gracie. I even thought there would be more time thinking constantly about Gracie then there has been. I told a friend once that having a child fighting cancer is kind of like putting a child in ballet. You have lots of practices you have to attend, money you have to spend and time you need to make to get the right equipment (or medicine, blood products, etc.). Then you hope that everything turns out beautifully at the end.

On the other hand, the past five months have been a lot harder than I could have ever imagined. Preparing to give Gracie to a doctor, where you know that she will come back in considerable pain is hard. Waiting in small rooms near a surgical unit for word from your doctor about whether cancer is spreading or shrinking is hard. Getting bad news in those rooms is hard. Speaking and thinking about the possible procedures and surgeries that your child may or may not need is hard. Five months ago, I remember thinking to myself that there were lots of things that I would need to do in order to help Gracie and my family but that there were also lots of things that I needed to do in order to keep up at school and work. I thought about how I could just make sure to focus on one thing at a time so that everything could get accomplished. I was sure that it would not be that hard. I reasoned that there had been many times in the past where I had various obligations and I had made it through most of that alright, so why not now. Well, it was a lot harder than I ever thought. I grossly underestimated how difficult it would be to concentrate the couple days prior to or the few days following chemo. It was not hard to mow the lawn or do some school assignment but I found myself unable to focus when I needed to concentrate on studies or to integrate ideas and concepts that were new to me. In many ways it was frustrating for me and much harder than I had thought. I am not sure that I have gotten any better but I am trying.

I guess, looking back, I really did not know what to expect five months ago. Very few things that I expected happened. However, I have been so blessed to see how much people care for one another. I have been able to observe how much people love and care for my little Gracie. I have found peace and comfort in knowing that thought and prayers were constantly on Gracie and our family. I have seen miracles, big and small. I have had my faith and friendships strengthened. I have learned from Gracie how be happy even when life is not perfect.

I thought I should share one story of Gracie while I was thinking about it. As you know she went to have her blood counts checked twice this week. Well, she really does not like getting poked and tells the blood techs as much each time. However, she is always excited to go talk to her friends there. She knows their names and they know hers. Apparently there are not a lot of children getting their blood checked on a regular basis at this location and we go early each time so have the same people. I know Stephanie had a bad experience the first couple of times getting blood but since then Gracie and I have not had any problems. The staff is wonderful and friendly and they are quick and efficient with getting the needed blood. I could not ask for any better people to help her. Gracie is a big hit it seems when she bounces into the office. She marches right up to the desk and "signs" in. Really she just scribbles on the next available line on the sign up sheet but they know who it is. Then she talks to the staff about their fish, or Christmas, or DisneyWorld or whatever she or they want to talk about.

So on Wednesday, Gracie made sure to bring her money (she keeps 50 cents in a little plastic bucket). She was so excited to show her friends her money and even to give some to them. It is pretty cute to see her run up and show it off to everyone. Of course, the money rattles in the container and she regularly spilled the money on the floor and worried that she would never find it all.

Anyway, she was about to get her blood drawn and had two techs in the room with her and told them, "I brought some money for my friends!" They seemed pleased but refused the money. One of her friends dropped another coin into her collection and Gracie was pretty impressed by that! Anyway, they got some blood without much protest and made sure she got a pink bandage and three pooh stickers (after some not so subtle reminders). She said thanks to all her friends and bounced back out to the car.

To me our little trip just personified Gracie's attitude amidst everything she has been through over the past five months. She usually knows that there will be some pain but always bounces in with a smile, leaves with a smile and wants to make her friends (aka everyone) happy along the way. I think the world would be a whole lot better if there were more people going around trying to do that. She sure makes my world a whole lot better having her here!

As always, thank you for your love and concern. We continue to pray for Gracie to keep both her eyes and that the tumors will not grow or spread! Go Gracie go!

Yesterday's counts

2009-01-24T21:23:00.002-06:00

Okay, I really did get these results yesterday but I've been busy and am just now getting around to reporting them.

HgB - 8.6

Platelets - 33

ANC - 690

So it's good news that the ANC is already going up, and it didn't drop as low as I was afraid it would. Her platelets were low but not low enough to need a transfusion at that point. However by tonight her legs were covered in bruises and she had petechia on the back of her neck and in her mouth. I called the on call oncologist and asked what she wanted to do with her. We're going to the hospital at 8 am to check her blood and given that she's already got symptoms she'll probably be getting platelets tomorrow. So James gets to take the other three kids to church and I'll spend the day at the hospital with Gracie. Hopefully it won't be too long, but I'm not holding my breath that I'll beat them home (church is from 11-2).

Stephanie

Today's Counts

2009-01-21T13:24:00.002-06:00

HbG 9.4

Platelets - 93

ANC - 527

Her platelets are looking really good still. We'll check again on Friday just so that we don't run into problems over the weekend.

We love Gracie

Gracie Pics

Rolling down the Highway

Gracie's gingerbread man

Trip to Bethlehem

Crazy Christmas Photo Shoot

Favourite Gracie Quote

Another EUA and all is well

Gracie's First Talk

Trip to the zoo and MRI

Our Medical Celebrity!

We Can Relate

Gracie Won!!

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

Dancing Gracie

Gracie and her new bike

Pics of Gracie

Relay for Life 2010

Gracie's Easter

March 13th Make-A-Wish Art Party

Giant Papillary Conjunctivitis

Good News for Post 200

EUA#15

National Retinoblastoma Strategy

Grace has another brother!!

You've Had a Birthday Shout HOORAY!

Longer Hair

A Call For Educational Reform in America!

Some pics for Gracie

Lucky #13

Diagnosis Day

Routine Check Up

EUA #12

Day 2 The Eye Is Complete

Day 1 of Making An Eye

Gracie's Hair

Pathology of Gracie's Eye and Gracie Meets Her Ocularist

Too Cute

Eleventh (11th) EUA

What her eye looks like

Stitch is out

Celebration of Life

We are home

You try and slow her down

72 hours cancer free and counting!

Some pictures of Gracie over the past few days

An update from the day after

Surgery is over

Surgery Day

Fun on the day before surgery

Surgery

Prosthesis Video

Gracie to be Cancer-free!

Gracie's 10th EUA

The Day Before

Relay for Life- A Second Go

Fwd: RELAY POSTPONED

American Cancer Society Relay for Life of Cedar Park/Leander

Goodbye Dr. P.

Baytown Relay for Life

EUA #9

GENETIC CLEARANCE!!!!

What's Up With Gracie?

Gratitude for our wish trip

Adopt-A-Wish®

Pics from Gracie's last day at Disney

Gracie's Deletion

We're Home

We are on the plane!

Answers to a couple questions

Getting Excited!

Mutation Found!

Gracie's Kick-off party

Gracie pics from past month

Gracie's 8th EUA- the Good, the Bad and the Beautiful!

Waiting for the next step

Counts

Counts

Checking blood and hospital billing headaches

A Budding Artist

Adopt-A-Wish^®