EUA#15

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

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!!

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!

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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!