Some pictures of Gracie over the past few days

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

An update from the day after

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

Surgery is over

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

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

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

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

Prosthesis Video

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!

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

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

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

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

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