Fwd: RELAY POSTPONED

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

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.

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

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

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!!!!

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?

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

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.