Monday, December 29, 2008
Sunday, December 28, 2008
This is Gracie and I after church. We let her go with her nursery class today for an hour and she loved it! Her blood counts are pretty good right now, she has over a week before the next chemotherapy and it seemed that no one in her class was too sick- so we let her go.
Tuesday, December 23, 2008
After spending all that time last week looking for pictures of Gracie I decided to put together some of my favourite pictures of her. Of course these aren't nearly ALL of my favourites. I only wanted a short slide show so I had to leave out some of our other favourites like Gracie at a Flames game when she was 3 weeks old (she had a dirty nose and it wasn't a great shot, but we were still impressed that she attended her first NHL game at such a young age). But hopefully you'll feel like you know Grace just a little better with these pictures. I now need to set about making slide shows for my other girls as they're anxious to see THEIR slide shows after watching Gracie's. Unfortunately their names aren't quite as easy to match to music. Merry Christmas and God bless.
Sunday, December 21, 2008
Friday, December 19, 2008
Thursday, December 18, 2008
Tuesday, December 16, 2008
Monday, December 15, 2008
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.
Friday, December 12, 2008
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).
Wednesday, December 10, 2008
Sunday, December 7, 2008
Friday, December 5, 2008
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.
Thursday, December 4, 2008
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.
Sunday, November 30, 2008
We've heard back from Make a Wish and we get to go to Disney World in March!! This was our first choice of dates. Hopefully Gracie will be cancer free by then and this will be a celebratory wish trip. The girls are all super excited, our son (being only 15 months) seems rather indifferent.
Wednesday, November 26, 2008
Tuesday, November 25, 2008
Gracie loves her courage beads and was so proud to start wearing them.
She is especially proud of the butterfly and the sun beads. These are special beads for the two injections she has received in her eye. She was able to chose from a whole bunch of different pictures for that event. The rest of the beads are a specific color for the specific procedure that has been done. She has lots of black and silver for all of her pokes!
This is Gracie having lunch at the clinic. Apparently the mac and cheese is wonderful! She seems to be enjoying her popsicle too! The mac and cheese is made by a lady whose daughter had used the cancer clinic. The lady now owns a bakery and donates mac and cheese to the cancer unit for the patients and their families. Stephanie said it was pretty good and Gracie ate it all up so we are grateful for this lady's generosity!
Isn't she cute! It made me sad though to see the milky area in her right eye. The reminder of such a terrible disease is never a welcome sight.
Gracie and her gorgeous mom!
This is Gracie with her courage beads. She loves to wear them but has learned that the necklace can break!
Well, things have been fairly calm since Gracie's transfusion on Thursday last week. I have been pretty busy with school and work and Stephanie and the kids have been on holidays and getting ready for Christmas. I know it is a bit early but our kids found some Christmas decorations in the garage and it kind of snowballed from there. Now our tree is up and Christmas music is playing all of the time! It is kind of exciting!
Sunday, November 23, 2008
Friday, November 21, 2008
Wednesday, November 19, 2008
Isn't she just so cute!
These final four pictures are from today (Nov 19, 2008). Gracie is my little darling!
Gracie is just being herself and smiling big for the camera here in the PJs sent from a friend in Canada!
This picture kind of shows the red that is coming back into her eye. With her platelets so low the swelling and bruising increase (this happened last time at the 10-14 day window after the chemotherapy as well).
This is our happy little girl!
This is a few hours before discharge. Gracie is coloring a picture and smiling big for the camera.
Gracie finally started enjoying food on Saturday. She does not look really happy here but soon after she was wanting to run around and play. You can see her Miss Piggy (Mr. Pig- as she calls it) behind her. She received it as a gift from Make-A-Wish foundation and everyone seems to think it is the best doll ever. Apparently Miss Piggy is a real hit!
I put this picture in because you can see how swollen her right eye is. This is about 36 hours after the carboplatin injection.
She was very tired for the first 48 hours after surgery. This is on Friday (the 7th of November) and she is just resting. We liked this a lot better than the October round because it indicates she is not in the same amount of pain.
Friday, November 14, 2008
Thursday, November 13, 2008
Monday, November 10, 2008
Gracie had an appointment today to undergo some badly needed dental procedures (she has had dental problems for a while and the chemotherapy is not helping with that either). I just got a phone call from Stephanie explaining that Gracie did not allow the dentist to stick anything near her mouth. She refused to let the dentist work even while her mom was right beside her. So they need to schedule an OR visit to do the procedure under anesthesia. She had already received a bunch of medication this morning to treat for potential bacterial infections during the dental work and she had received the pain killers for the procedure so I think she will be out for the morning at least. It is sad that everything could not get done today and that Gracie has to go the hospital again near her next chemotherapy appointment (it has to be when her blood counts are high).
We continue to hope and pray that Gracie will keep both her eyes throughout all of this. She is such a strong little girl and we love her dearly!
Saturday, November 8, 2008
The only major hiccup today was that the needle into her port-a-cath got clogged and so they had to reinsert her port. This is the first time that we have let them access the port prior to the EUA procedure. Gracie hates it when it needs to be accessed so we thought that it would be better when she was asleep already, however, in the past, the nurses in the operating room did not seem terribly confident working with the port so we had just waited until the cancer unit to access the port. It is probably just a coincidence that the port got clogged the first time that an OR nurse accessed it but it was still frustrating to see that it had to be reaccessed.
It is just after 10:30AM and the doctor just came in to do the final assessment before we can be discharged, so hopefully we will be on our way shortly. Gracie is really excited about everything right now and convinced the volunteers to give her all of their orange markers. She told them it was her favorite color. They only had two packages with orange in them. When they asked which set she wanted she told them both. Now she is coloring and telling the doctor about Disneyworld.
It is great to see her so happy!
Thanks again for your love and support!
Friday, November 7, 2008
Yesterday, in talking to Dr. P (our pediatric ophthalmologist) we found out that Gracie is her first patient on this treatment regime so she is learning about how a patient reacts to the subtenon injections along with us. Dr. P is really good at explaining why they are doing things but I also wanted to speak to our pediatric oncologist, Dr. M, because he is involved on a national team of doctors working on new treatments in retinoblastoma. Dr. M did come and speak with us this morning. It was nice to get his perspective. He basically said the same things as Dr. P had said but emphasized that it was a very good sign that the tumors in the right eye were not growing. He reiterated that the it was difficult to assess at this point if the visceral seeds were going to be effectively destroyed by the treatment but they had seen some calcification on the seeds and that was a good sign (there is just not as much calcification as we had hoped).
Dr. M also explained a little further about how the tumors on the retina of the right eye appeared to be more mature. It is difficult to tell at this point, but they may have stopped growing long ago. If it is true they are benign (not growing anymore), that would explain why the treatment has not caused them to shrink either. Dr. M emphasized that because Gracie has such good vision in both eyes, they are trying to do all they can to preserve the eye. However, if the tumors (particularily the visceral seeds) cannot be controlled and the right eye is removed, then Gracie will still have very good vision from her left eye. The possibility exists that, if the visceral seeds are successfully treated and the tumors on the retina are thought to be completely benign, then Gracie could continue without removing the tumors and be constantly monitored to make sure that the tumors do not start growing again. This course of action carries some risk as one of the tumors is still right adjacent to the optic nerve. If the tumor were to grow onto the nerve then the cancer would have access to Gracie's entire body and be very difficult to treat. Dr. M assured us that there is no risk while she is undergoing chemotherapy and that there are too many unknowns at this point to make any decisions about future treatment, however he was kind enough to answer our questions and explain several potential options.
We continue to receive wonderful care from the healthcare workers and appreciate their efforts. As always we hope and pray for Gracie's full recovery from this round of treatments and that she may keep both of her eyes. Thank you all for your support and concern especially while Gracie is in Houston these few days.