Dental work!

On Thursday this past week, Gracie went into the hospital to undergo some dental work. If you recall, she would not allow the dentist to work on her teeth in the clinic so needed to go into the hospital and take general anesthetic. She received two crowns (as you can see in the picture), one filling and they put sealants on 6 of her teeth. Her mouth was pretty sore coming out of surgery but she was back to her happy little self in no time! She has been under anesthesia more times than I even want to think about but she is a real trooper and I am very proud of her. Stephanie said that this was the first time she had been allowed to stay with Gracie until Gracie had been given the anesthetic. Stephanie said Gracie did not really fight but was good for the doctors. People had warned us that Gracie would start to fight more as time went on but she has so far been quite good about her many procedures and doctors visits.

Gracie's new glasses

Grace picked up her new glasses today. She was not thrilled to put them on or keep them on but got better as the day went on. The first picture is of her right when she got home. She was very tired and I put her down in her bed then took a picture. In the others she was quite happy to demonstrate how cute she looks with her glasses on. You can see that she is wearing the miraflex in the first and last pictures and her more formal ones in the middle two pictures. Now we have a mission to convince her to always keep them on so that they will do their job!

New Glasses

On Wednesday we took Gracie to see Dr. O. All is looking good with her eyes (except for tumors and vitreous seeds). We also picked out two pairs of glasses for eye protection. She wanted nothing to do with trying on glasses and tried to hide her head from us when we did. Until I pulled out a pair of pink miraflex glasses. They are completely soft plastic, ultra flexible, impossible to break and kind of look like she's wearing goggles. But as I put them on her she said with glee "I like these!" So we got her a pair to wear around the house as she'll more likely keep them on. She can roll around and play and they'll stay comfortable. They won't protect her eyes too much if she isn't wearing them! We also got her a pair of dressier ones to wear when we go out. They look adorable too. We'll be able to pick them up in a week, so stay tuned for pictures of her modeling them. She's just so darn cute, even in the miraflex ones (she got the square shape in pink pearl).

http://miraflex.info/catalog/basic/index.htm

Support Groups

I found during my searches yesterday two really good regional support groups for retinoblastoma. (I've added their links to the right side of the blog). I loved the positive message I got from both of these sites.  It seems they meet monthly and play together, support each other and have fun. It's good for children to meet other kids like themselves. Perhaps to see older kids and how well they're doing in life would be good for me as a mom too. There is an instant bond to families who have the same disease that you do and I'd really like to meet more families like us. So far I've made really good friends with a mom in Boston (Noah's mom) and I've written a time or two to another mom in Houston. It's nice to talk to someone who really knows what this is like. I've since been looking to see if they have any such group in central Texas. Or Texas at all.  It doesn't seem they do. So now my big idea is... how would I go about starting such a group? I don't want it to be such a huge undertaking that it overwhelms me. My first priority is to my family, and it can't get in the way of that. But I think this could be a real strength for our family. Certainly we're not the only family who could benefit from this. If y'all have any suggestions we'd warmly welcome them. 

Stephanie

Today's Counts

Today's counts look great so Gracie is going ahead with dental surgery tomorrow to put caps on her molars which are breaking down because she has hypoplasia (bad enamel on her teeth - totally unrelated to cancer - she's just lucky I guess).

Hg. 9.9

Total White Count - 4.6

ANC - 2700

Platelets - 133

Main Street Bethlehem

This is Aunt Michelle and I (I'm the lone brunette in a family of blondes)  with all 4 of the kids at Main Street Bethlehem in Burnet. Thank heavens Gracie (with her hood on) was feeling well enough to go (yay zofran!). Mostly she just sat in her stroller while her dad or Michelle pushed her around. She really loved it, so we're glad we went. We're in front of a corral of sheep.

Pictures in the Hospital

At Home

Gracie has really been doing well this round. She has thrown up a couple of times, but we've always been able to give her something for the nausea and she feels better after. Since she's been home her older sisters (7 and 5) have been pretty jealous of all the toys she got while she was in the hospital, but they've just convinced Gracie that she needs to "share" with them. Yes, my kids are pretty smart, even if they are somewhat manipulative. Gracie's pretty good natured for the most part though and seems to be okay with sharing most the time. We took her out last night to go see a really neat Christmas display that they do in Burnet. If you ever come to Texas I'd highly recommend it, they recreate the city of Bethlehem when Christ was born. She loved it and we were glad she was feeling well enough to see it while her aunt was still here. Her aunt Michelle flew in from Vancouver to take care of our other kids while we went to Houston. What would we do without family? Well, we'd take advantage of having such wonderful friends more often. But really family is our first choice. So thank you Michelle and Matt (for parting with Michelle) for making the sacrifice to come down and help us for a few days. It meant so much to us.  Grace continued to feel well today and her counts are still good so we got a special treat of going to church again as a family. What a wonderful blessing! She'll be too immunocompromised the next two Sundays to attend church but our plan is to take her on the 28th and actually let her go to nursery for her final Sunday before moving into Sunbeams (the Sunday School/Primary class for kids turning 4 in that calender year).  There are 4 Sundays between chemo sessions. Usually she misses the first because she feels so awful after chemo. She misses the second and third because she's immunocompromised. She misses the fourth because she has to start chemo in a few days again and if she happens to get sick it will delay treatment. But we have a 5 week break this next round (due to New Year's) so taking her to church on that 4th Sunday won't be the same risk that it usually is. So she gets to leave the nursery with a bang. We're so grateful that Gracie is doing so well and keep praying that this round those tumors will do their job and just go away. Maybe 3rd injection's a charm. Thanks for all your support and prayers. 

Stephanie

Day 2- Round 4

Gracie has been quite chipper today. She woke up and had breakfast this morning! She has never really eaten for the first couple of days in the hospital so that was a good sign. In the morning she was told there was a Christmas party in the Cancer clinic here and she wanted to go. She had seen Santa twice yesterday but was excited to have a party today. So at 10AM we went over to the party. One of the large corporate donors to the Texas Children's Hospital was putting on a party. It was really nice. Gracie say Santa and Mrs. Clause again. Last night when she had seen Santa, she was walking away with her mom and said, "Isn't Santa just so sweet?" She once again loved to see him and he gave her a Christmas stocking with several small gifts. Then Gracie was directed to several large piles of toys from which she selected a My-Little-Pony coloring book collection. Then Gracie was shown a couple piles of stuffed animals and asked to take one. There was also a jester, a singer, two penguins, a face painter, caterers, etc. Everyone gave Gracie special individual attention and learned her name. She had a good time but tired out quickly and came back to the room.
Early in the afternoon the same group came to our floor at the hospital to hand out gifts to children that could not make the party. One of Santa's helpers came in and we explained that Gracie had already seen Santa. Gracie perked up and said, "You brought me a present?" The lady thought she was just too cute so gave Gracie another toy. After that Gracie and her mom had a nice long nap while I tried to get some work done.
Gracie is feeling really well and we are pleased with the recovery she is making. We have had excellent care and are constantly reminded how many people are praying for Gracie. Thank you all and know that we have been truly blessed because of your prayers and concern. Even though sometimes we are discouraged and/or disappointed in how the tumors are responding we know Gracie is being watched over and loved. We are so grateful for the comfort and support that we have been given even when times are tough.

Day 1 Round 4

We decided to go ahead and do the third injection.

We have just now settled into our room here. The day usually starts by checking in to the surgery floor at 6 or 7 am (today it wasn't until 745). We do pre op stuff and then 2 hours later Gracie goes for her EUA and today she got her last subtenon carboplatin injection (also under anesthesia). It takes about an hour. Then we get called to a little room where Dr. P. discusses with us what she saw during the exam and how everything went. After that we go to the recovery room. If all goes well we're usually on the surgery floor for about 4 hours. Then we start waiting for a bed to become available. We've had to wait in various places including the cancer clinic and recovery room. Our wait has usually been between 4 and 6 hours. It seems like forever. So by the time we get our room we're usually very grateful as we can finally settle in for the remainder of our stay. It's too bad cancer beds are such a commodity. We could stand a lot fewer children having cancer.

So back to our discussion with Dr. P. in that little room. Basically we haven't seen any change in either eye. Things don't look great for her right eye and now we're a little concerned with her left eye too. We've always been prepared for the worst with her right eye although we continue to hope and pray for the best. But Dr. P feels that her right eye will most likely need to be removed. The results from next months EUA will probably be the deciding factor. The 2 tumors in the left eye were just supposed to melt away with chemo and they're not exactly doing what they're supposed to. They responded to the first couple of rounds, but not much to note after this one. Kind of frustrating. But they are still small enough (B tumors - "A" being the smallest and E the largest) that we have several treatment options available. Next round they're going to try a different laser. Then they have cryotherapy and radioactive plaques still to go to. She said she used more of the laser today hoping that that would make a difference. We'll only do more than 6 rounds of chemo if those other local treatments don't work and the tumors actually start to grow again.

Gracie is doing remarkably well this time. After the procedure she even ate some toast and usually she doesn't eat anything until Saturday morning just before discharge. She saw Santa Claus on her way between the cancer clinic and the inpatient unit. He gave her a stuffed cat with a Santa hat on it. Good deal considering we left her Miss Piggy at home on accident. Crisis averted. She only got one dose of morphine and that was still in the OR. She's doing really well on just tylenol 3. She's not skipping and jumping or anything, but all thing considered she's doing really well. Dr. P. tested her acuity in both eyes while she was under anesthesia too. That's really the most accurate way for small children. She still has great acuity in both eyes. Go figure, with all that she's got going on in those little brown eyes they're still working better than mine. We're going to get her glasses on Wednesday for safety purposes, but they'll just have plain glass in them.


James and I are doing really well too. We feel such peace and comfort. We know where to look to find that, and to quote some of my favourite lines from a hymn "We doubt not the Lord nor His goodness, we've proved Him in days that are past." We really have proved him time and time again, and he will never fail us. We have so much to be grateful for.

Stephanie