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