Party for Noah today!

So tonight we had a discussion about what our friend Noah and his family had been through. Today, Noah had his right eye enucleated and we wanted our children to understand how hard that it was but that sometimes bad or hard things happen to people and it is not their fault. In fact it is certain that everyone will have trials and hardships in life but that if we continue to have faith in Christ than we can hope for a better world. We talked about making that faith our anchor so that no matter what came our way our ship would not be taken off course. It was fun to see the kids excited about dropping their anchors so that we would never get too far away from each other. That is what I truly do hope for.

Anyway, Noah's family has been a good example of having faith even in times of terrible trial. We also discussed how today should be like a celebration for Noah in that he was getting rid of a whole bunch of cancer cells. So then we had a party and ate the pineapple upside-down cake that Stephanie had made. You can see a picture of Gracie and one of her sisters and the cake. It was very good and we enjoyed cheering Noah on with our little celebration.

We continue to pray for Noah, that the treatments in his left eye will effectively kill the cancer. We hope that the same goes for Gracie's treatments in both of her eyes. She has been so good these past couple of weeks (besides being a 3 year old that never wants to go to bed). She is so full of love and energy. Today she wanted to play hide-and-go-seek every time I was near her. I would count to 10 or so and she would be off. Then as soon as I said, "Ready or not, here I come," I would hear this squeal of delight and see Gracie burst out of her hiding space with a huge grin. Often she would jump into my arms and say, "I love you one Daddy!" She would then expect me to say, "I love you too, Gracie!" Then, "I love you three Daddy!" etc. She usually gets stuck on six or eight for a while then lets the game end and is off to find where her sisters have hid.

She is a real sweetheart and we love having her in our home. It still often feels like a really bad dream when I think about the cancer that is in her eyes. We so very badly hope and pray for good news in next weeks EUA. There has been little progress over the past couple of months- no further growth but still little improvement. The doctors, Stephanie and I are worried that the right eye may never respond and may need to be removed however we continue to hope for improvement over this last month as her series of three injections should have had a chance to do their job by now. 

We are so very thankful for the generous support we have been given and the prayers that have been offered in our behalf. We feel so very blessed to have the family and friends we do. Sometimes life is hard but it is difficult not to feel so very blessed when I look around and see all of the many things that I have been given. If I had my way, I can think of a few things I would have left out of my life but I will gladly deal with all of the hard things for the right to be with my family.

Christmas Dress!

Gracie and her sisters in front of the Christmas tree today right before church. Their grandma got them such pretty matching Christmas dresses!

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.

It was nice to have everyone at church for the whole time! It has been quite a while since we all got to stay together. We had a wonderful Christmas and thank all of our friends and family for making it so excellent. We spent the time mostly just with our little family but had so many people that went out of their way to make our lives a little brighter. Thank you all. We wish you all a belated Merry Christmas and a joyous New Year!

Today's counts

James and Gracie went to the lab at 7am for blood work so we got the results early today.

HgB - 12.6

Platelets - 89

TWC - 4.8

ANC - 1240!!!!

Way to go Gracie!! You made it through the week of your nadir while everyone else was sick and you came out of it healthy and strong and your counts are going up, up, up! It's another one of the tender mercies of the Lord. You couldn't have given us a better Christmas present Grace! Merry Christmas!

Stephanie

Our Little Gracie

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.

Stephanie

Look What I Found

We really have no idea how long Gracie's had cancer. Possibly since before birth. But I was looking through pictures doing something totally different when I came across this picture of Gracie when she was 19 months old. In her right eye you can see that her pupil reflects back white. Sometimes this just happens, but with Gracie this may be the first photo we have showing her tumors in that eye. After I found this picture James and I spent hours scouring over all the photos we've had of her since birth. We have only 2 possible pictures showing leukocoria (white pupil) prior to when one of Gracie's tumors detached from the retina in August 2008 (making it much easier to see). With that detached tumor (visceral seeding) floating around we can see it all the time now. But usually retinoblastoma causes a white reaction rather than the red eye commonly seen in low light photos. Because Gracie's tumors are all located peripherally she still has a red reflex in almost all of her photos (it's not too common that ALL of the tumors are peripheral leaving an intact red reflex). Notice how this picture's taken at quite an angle and the lighting is very dim, this is what is required to get the white pupil (leukocoria).  

IF YOUR KIDS EYES REFLECT BACK WHITE IN PICTURES GET IT CHECKED OUT. If the pediatrician says it's no big deal tell them that you want to see a pediatric ophthalmologist, or at least an ophthalmologist. Pediatricians do not have the experience or tools to accurately diagnosis retinoblastoma or to accurately give you an all clear. Eliciting a red reflex in an office is not good enough to clear you of possible retinoblastoma. The exam has to be done at the very least with dilated pupils, using an ophthalmoscope so that you can get a clear view of the retina (hard to do on wiggly children). Retinoblastoma is a rare cancer, so you're probably fine even if you do see a white reflex in low light flash photos - sometimes eyes just do this in pictures - but you'd rather be safe than sorry. I'm not intending to cause fear by putting in this plug for retinoblastoma screening, I'm just trying to increase awareness. Knowledge is power. 

Stephanie

Pictures From Our Longest Day (or one of our longest)

Playing with bubbles while waiting for her transfusions to start.

She loved these therapy dogs.

(Sorry the pictures are blurry, they're taken with our phone)

Another Transfusion (or two)

Yesterday afternoon we got a phone call from Houston with Gracie's counts. 

Hgb 8.3

Platelets - 35

ANC - 864

Yes, that's right, two days after a platelets transfusion her platelets were still only 35. So their suggestion was that we either take her to the clinic here today or that we just watch her and monitor her for symptoms. Well I went ahead and made an appointment for her to see Dr. L at 0930 this morning, but by the time I went to bed last night the last thing I felt like doing was to spend the morning at the cancer clinic. I'm still feeling rather under the weather. So I figured I'd cancel today's appointment and just monitor her for symptoms. The monitoring didn't last long though. By the time we woke up this morning Grace had petechia on her face, scalp and in her mouth. So we decided to keep that appointment. We had a little bit of an ordeal getting lab work done (I ABSOLUTELY HATE INSURANCE COMPANIES, especially ours). But I made one very strongly worded (actually I don't think my words were too strongly worded it was more the tone, I try very hard not to be rude) phone call to our insurance company and within half an hour I had the satellite lab the cancer clinic uses approved as in network for the next year for Gracie's lab work. The phone call was actually pretty funny as I had 4 clinic staff in the room with me while I was on the phone and Dr. L our oncologist was there encouraging me to get the supervisor on the phone. Suddenly when I made that request the problem was an easy fix and it got taken care of. I love Dr. L! When we got the lab results back (it only takes about 3 minutes) they were:

HgB - 7.8

Platelets - 22

ANC - 320

So not only did she need a second platelets transfusion this week but she also needed a blood transfusion. Additionally her immunity has fallen through the floor in just 24 hours, they've never been this low. Which is just great given that we have 3 sick people in our family right now. And they figure she probably isn't going to nadir until the weekend as her bone marrow is getting tired and so the nadir will be lower for longer. But she continues to do remarkably well with all things considered. Hey, even without all things considered she's doing really well. The clinic was ultra busy today so it took a very long time to get everything in order to start the transfusions. The platelets were started at 2:30 pm and they take about 45 minutes to give. Blood has to be given much slower though, over 3-4 hours. We had to get transfered over to the hospital to finish the blood transfusion as the clinic closes at 5. We were finally finished the transfusion at about 7:20 and by the time we got home it was just after 8. Such a long day. I'm exhausted but Gracie had a two hour nap, plus got a jolt of energy with her blood transfusion. She's got a long while before she'll be ready to sleep tonight. 

We're so glad for people like Claudia at the clinic who add a positive element to this whole experience. Gracie got a bunch more beads of courage that she's earned from all of her pokes, and chemo and transfusions and everything else over the past month. Those beads are absolutely cherished by her. We got cake today as they were having an end of treatment party for one boy at the clinic. Gracie also loved the two therapy dogs that came in to see her. These are all the little things that keep Grace excited about going to the clinic every time. With all the things that have happened to her over the past 5 months she still thinks going to the hospital is fun. We can't say enough how grateful we are for all the staff and volunteers who put so much into making this a great experience for our little girl. They're so good that our 5 year old thinks it would be fun to have cancer! It's kind of disturbing to me actually. We've had several conversations with her on why cancer is anything but fun, but really when you're 5 and see your sister come home with necklaces, and arms full of toys, and listen to her talk about the parties she goes to and know that she got to make a wish to do anything she wanted and people are actually going to make it come true - we're having a hard time convincing her. But as parents when you watch your little girl go through so many horrible things, you're awfully glad that people are so good at helping her so that she only remembers the good things. It helps us see how many truly wonderful people there really are in the world. 

So this has definitely been one of our busiest weeks yet, of course I couldn't have an easy week while I was sick. So just to recap.

Mon - Sam's EUA

Tues - Gracie's platelets transfusion

Wed - Gracie's genetics appointment in Houston

Thurs - Just a day to be sick

Friday - Gracie's all day appointment for a platelets and blood transfusion

I figure for all the extra slack that James has had to make up for this week he definitely earns the Greatest Dad/Husband of All Time award. Oh yah, he already had that one!

Stephanie

Blood work, Platelets, Geneticist, Blood work

Well it has been a crazy two days. On Tuesday morning, I took Gracie in to get her blood tested. Stephanie was feeling quite ill so Gracie and I had to stick together. In the afternoon, I had to go to the school for a class but while I was there the blood tests came back and Gracie's platelets were really low. She needed a platelet transfusion, preferably prior to a planned trip to Houston on Wednesday morning. So I hurried home after my class and Gracie was in a hospital bed at 6PM preparing for a transfusion. The platelets were ready but apparently shift change for the nurses and the pre-medication from the pharmacy took some time so we did not get home until about 10PM. Gracie was sound asleep and so I put her in bed, then got ready for an early trip to Houston.

Gracie and I left the next morning at 4:20AM for our 8:05 appointment with Dr. P, a geneticist specializing in retinoblastoma in Houston. There was a bit of a mix up and Dr. P could not come until 9AM so we had a bit of a wait. Dr. P was quite nice but really had nothing new to say. It was necessary to meet with her or else she could not order the blood tests Gracie needed to find her Rb mutation. It was really frustrating that we had to make a trip to Houston when our family has a geneticist and tons of doctors that are in much closer proximity to us. While these people could order the test, no one could guarantee that our insurance would cover it unless we went to Houston. So off we went. Dr. P did explain a few things that were unclear before. The tests could come back in one of basically four ways. They could find a known mutation, they could find a variant mutation (a mutation that causes retinoblastoma but that has not been identified previously), they could find a mosaic mutation (where some cells have the mutation and some do not or they may not find the mutation (5% chance of this happening and just means that it was hard to find not that it does not exist). I had never heard of a mosaic mutation but basically that would mean that the mutation occurred early in Gracie's fetal development but not likely in the original sperm or the egg (i.e. she did not inherit it from her mom or me). This would be very nice because it would mean that not every cell in her body has the mutation, thus reducing the chances of additional cancers or passing the mutation onto her children. There are not a lot of mosaic cases (percentage wise) but they do happen.

Anyway, Gracie spent much of the time showing the doctor how to play games or watch movies on our phone. If fact she was quite put out that Stephanie called during her movie so that the movie paused. After the appointment Gracie asked to get a hamburger from McDonalds. So we stopped in Houston and bought Gracie a Happy Meal, which she never ate, then drove home. We arrived just after 2PM so that I could pick up her older sister from school and then lay on the couch and watch a movie with the family. I guess most of them watched the movie while I slept. It was a long day but Gracie travelled well, in fact she slept through much of the trip.

Then this morning I took Gracie in to get her blood counts checked again. They are worried she will need a transfusion because her Hemoglobin is looking kind of low. Gracie has done so well at the blood clinic lately. I tell her before we leave where we are going and she is happy to come. She really enjoys most of the staff there and they know her routine. She goes to her regular spot in the back when they call and then asks for her stickers. They bring her stickers and then prepare her arm for the needle. Gracie tells them she doesn't want a poke about 10 times but still sits there and allows the blood to be drawn. She has a couple of staff members there that know her and are really good and quick. Today she even got some candy! By the time she leaves the little procedure room with her pink tape on her arm, she is back to her happy self and wishing people a Merry Christmas!

I am so happy to have Gracie and to she how well she deals with everything we put her through. We hope that Gracie's counts are good and that the chemotherapy is doing it's job- fighting her cancer!

Thank you all for your support and love, I cannot even tell you all how much it means to us.

Today's Counts

Hg - 8.8

Total White Count - 3.2

ANC - 864

Platelets - 22

Gracie is getting a platelets transfusion tonight at the Children's Hospital. She would normally just do it in the cancer clinic but we didn't get through to them until 2pm. By then it would have been a tight squeeze to get it done before 5 given that I would have had to find people to take care of my other kids and driven the 1/2 hour to the clinic. Additionally I'm sick today (great timing) and if Grace went to the clinic this afternoon I would have to be the one who took her as James is at school. I don't feel up to wearing a mask for 3 hours when I can hardly breath already. So we decided to swallow the higher copay and have James take her to the hospital when he gets home. We need to get the transfusion done today as we're traveling to Houston tomorrow for the genetics appointment. We didn't want to take Gracie to Houston with critical platelets levels. Her platelets won't nadir until Friday so by tomorrow they'll be at least in the low teens, if not lower. While James is at school I'm doing my very best to keep my distance from Grace as now is a poor time for her to get sick. Although I must say I'm impressed that her ANC is still so high. I was expecting them to be closer to 500. So basically Grace is expected to be watching movies or be upstairs playing in her room until her daddy gets home. It's not working as well as I'd like, but it'll have to do for now.

Another EUA

Today, Gracie's younger brother went for his second EUA. Since we have not been able to get genetic testing completed, all of Gracie's siblings need to have their eyes checked on a regular basis. Gracie's brother is too young to do that in the doctor's office so Dr. O (our pediatric ophthamologist) did another Exam Under Anesthesia. Under 4 or 5 years of age, siblings of bilateral retinoblastoma patients are suppose to have the exam every 3 months. The risks greatly decrease after that age so they can be looked at less frequently and usually the kids are good enough to sit still and obey directions so that the exam can be done in a doctor's office.

Anyway, the procedure was done today, and while we expected nothing to be found, there is always a bit of nervousness until it is over. The exam was short and we did not have much of a wait but still it was nice when the whole thing was over and our son was back with us. You take so many things for granted until you realize how fragile they could be. Looking back six months, I would have never imagined that Gracie would be fighting to keep her eye. We have been so blessed by friends and family. They have been a source of constant strength and support. We continue to hope and pray that the chemotherapy will effectively treat Gracie's tumors and her eye will be saved. We are also grateful for the health professionals that have assisted in so many ways and been so integral to Gracie's care.

Lastly we continue to pray for Noah and his family. Their last posting on http://www.NoahChristianShaw.blogspot.com is titled "A Bump in the Road," as the doctors have found additional tumors. We are sad for that but are excited that some excellent facilities allow for Noah to receive special treatments for his tumors. We hope that Noah's little body keeps fighting the cancer and pray for improvements in the near future!