More Pictures

This picture was taken one day after her chemotherapy. She is pretty happy and back to her normal 3 year old self.
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!

Hospital pictures

Gracie is playing with the balloon that some anonymous individual dropped off at her hospital door for her. She loved the balloon. Especially here where she is about to be discharged.
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.

Today's Counts

Note how I'm posting YESTERDAYS counts TODAY!! Imagine how impressed I am.

Hgb - 8.7

Platelets - 36

ANC - 586

Houston told me to go ahead and see about scheduling a transfusion for Wednesday or Thursday as we know her counts are still going to be dropping for a few days. They think she'll probably need blood and platelets this time as her hemoglobin is already getting low. She's also considered moderately neutropenic so it's time to be extra cautious about where she goes as her immune system is down.

Chemo Aftermath and The World's Best Sister

Gracie just hasn't been doing as well after this round of chemo. It's not that she's doing horribly, I'd still say she's doing quite well with all things considered. It's just that she's acting more like you'd expect someone to after such an ordeal. She's done so well in the weeks following chemo in the past (once the pain of the injection was gone after round 2) that we just figured it would be all smooth sailing. She continues to do well, but we definitely have a grumpier version of the cheerful little girl we know. One time she was acting particularly grumpy, but denied any pain or nausea. I decided to give her some zofran (for nausea) any way - just in case. Wouldn't you know it a half an hour later our chipper little Gracie returned to us. After that experience we decided to give her some zofran more regularly. It seems she just doesn't know how to express what she's feeling and as such she just acts grouchy. 

This week my sister gave me a wonderful idea. Throughout the past months some days have been better for me than others. There have been a couple of nights when it was very late and I just kind of break down. It doesn't happen too often, but it has on occasion. Usually James and I can talk and he gives me a lot of strength. However, there has been a time or two when it's happened and James either hasn't been home or he's already asleep. Thank heavens I have the best sister in the whole world (and a rather understanding brother in law). On those nights, when it's very late (even in Idaho where she lives) I can call her up and we can just cry together. I only have the one sister. We always shared a room. Even in university we were roommates and shared a room. It made for A LOT of fights, but I can't imagine feeling closer to a sister than I do to her. We are so much a like, we think on the same lines. As such sometimes she's just the absolutely best person to talk to.  A couple of nights ago my sister and I had one of these late night conversations. The conversation we had is going to sound very negative, and you'll have to forgive me for that. I choose to be optimistic about our future and know that I am one of the most blessed people to ever walk the face of this earth (I've got James!!!!...and 4 beautiful children!!!!!), but every now and then I fall into despair - especially when I'm tired. I was lamenting about all the uncertainties ahead of us, all the difficulties that cancer has brought into our life. I was lamenting about the decreasing odds of being able to save her eye. I was wondering if we need to enucleate that eye if she'll understand how hard that decision was for us? Will she know we only did what was best for her? How many prayers were uttered and tears were shed during those days?  I was lamenting that cancer will always be a part of our life now. The only thing that will take it away from us is if they can find a 100% cure for every type of cancer that exists. Gracie is the point mutation for a genetic cancer. So she didn't inherit it from anyone (we think), but the mutation is in every cell of her body and she can pass it on. Also she has a 51% chance of developing future cancers herself. So even if we were to remove the cancer from both of her eyes and it was to never come back there she has a high risk for developing bone cancer, skin cancer, and really any of the sarcomas as well as an increased risk for any other type of cancer. I watch her run around and have so much fun and it's hard to think that she will never escape cancer. Each of her children has a 50% chance of carrying this same mutation. She'll have to have cancer testing done on each of her babies, immediately after birth if not in utero. She'll most likely have to go through this same ordeal with her children. I will with my grandchildren. So much health that I have just taken for granted in the past will no longer be able to be taken for granted. Our lives will always include oncologists. 

As I was crying to my sister she helped me remember some things. There is still a 49% chance that Gracie will never have cancer again. Six months ago I wouldn't have been impressed with these stats, but it's a whole lot better than a lot of kids have so we'll readily embrace that. Also Gracie will be able to help her children better than we are because she's gone through it. She'll truly know what it is like. She'll be able to provide strength for her children that we're not able to because we lack that experience. Now we're coming to my sisters wonderful idea. She suggested that we print off the blog so that Gracie would have a record of our experiences. Because although she might understand what it's like to be a child with cancer, we understand what it's like to be parents of a child with cancer. James and I will be there to offer our support and our records can help her too. She will know exactly how much thought, prayers and even tears went into every decision we made on her behalf.  Hopefully she'll beat the odds and never have to deal with her children having cancer, but if not we'll be prepared. So I spent some time moving the blog into a word document that eventually when things have settled down we can have printed and made into a book. 

So we have some more challenges in our life than we did before. I could think of so much worse than this (I have a rather vivid imagination). Reading through our blog and all the comments on it reminded me of how many people love us and pray for us. We have more than most people could even imagine. We are so grateful for this. We are so very, very blessed. Gracie is very blessed. And hopefully her sisters will be as good to her as mine is to me. Thank you Kir.

Stephanie

Today's Counts

Hg - 9.6

ANC - 960

Platelets - 106

Her counts are on the way down. They are expected to nadir (reach their lowest point) 10 - 14 days after chemo. If she's going to need a transfusion it will be next Thursday or Friday. So Tuesday or Wednesday is when we're planning to go donate platelets to make sure the blood bank has them.

The Monday after round 3

After the hospital located the drugs needed to send us home on Saturday (which took a couple of hours), we headed home. Gracie slept much of the way and has been tired much of the time since then. However, she is doing quite well and goes through periods where she is her normal bouncy self. The swelling in her eye is minimal (particularly compared to last time). She does not like the drops that she needs but tolerates them. We are continually grateful for the love and support that has been shown by friends, family and neighbors. It is nice to know that people care so much for Gracie and our family.
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!

Day 3- Round 3

Last night went extremely well. Stephanie was up with Gracie twice after her chemo was completed at about 10PM. Gracie seemed to sleep well and has not had any pain killing medication since yesterday morning. Gracie and I spent a large chunk of yesterday afternoon painting and playing in the games room. She was happy to be up and literally bounced back to her room at 6PM to start receiving fluids to prepare for chemotherapy at 8PM.
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!

Day 2- Round 3

Gracie's night was OK. She slept most of the night. The chemotherapy was completed at about 10:30PM last night and so we all were able to lay down at a reasonable hour. I was up with her every couple of hours for her to use the bathroom and sometimes I woke up when a nurse came in to check her vital signs but it was not as bad as it could have been. Gracie has not experienced the severe pain that she did last time so we are really pleased. The swelling in her eye is making it difficult for her to open her eye by herself but the swelling is far less then last round!
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.

Day 1 Round 3

Gracie waiting for her chemotherapy drugs tonight.

Gracie waiting for her procedure with her dad.

Gracie in the hotel last night after she had been playing around during supper and in the hotel room.

Last night was perhaps one of the longest nights of my life. I was so worried that I could hardly sleep. At 0130 I finally gave up and pulled out my scriptures and started reading. At 0330 I tried to sleep again. This time I dozed off and on until 0530. Then we woke up and got ready. We arrived at Texas Children's at 7am. Gracie was taken into the OR at 0940. She was in for over an hour. At that time we were called into the consult time to talk with Dr. P. Her left eye has improved significantly. So much so that the one tumor is almost nonexistant and the other is about half gone. Unfortunately there is very little change in her right eye. (The right eye is the one that is class D) The vitreous seeding may have calcified a little, but that's about all that's changed. The tumor right next to the optic nerve has not shrunk at all, neither have any of the other large ones that are attached to the retina. This was a very hard thing to hear as the possibility of saving the eye has significantly decreased because of the lack of progress seen. Remember we were only given a 50% chance to begin with. I asked if we should continue with the treatments, or if the prognosis was pretty much set in stone now so there was no point. Dr. P. strongly suggests that we stay the course and complete all 3 carboplatin injections. Although she was very straightforward with us about the decreased chances of saving that eye, which we appreciated. At least this way there won't be any what-ifs.

The good news is that the swelling and pain is significantly better than last time. She's only had to have two doses of morphine and the swelling is probably only a quarter of what it was before. Gracie has been sleeping most of the day since coming out of anesthesia. She's not really interested in eating or drinking, but she wasn't last round either. She's kind of finicky with what parent she wants with her when she's awake. Sometimes she wakes up and asks for James, and then other times it has to be me. One time she woke up and James was laying beside her. She said "Daddy, you're making me sad" When James asked why she said "Because I want mommy to sleep with me". She's done the same type of thing with the opposite request for daddy. It's nice to have things be so much more comfortable for her. We got a bed on the cancer unit just after 4:30 pm and we are all much more comfortable. Prior to that we were in a recovery room. There Gracie had a bed but the rest of us had hard chairs and we were all together in a large room with other recovery patients.

OK- prior to this Stephanie was writing and now we have switched off so this is James.

Gracie is just about to receive the chemotherapy drugs. It is 8PM and she is still sleeping. She has only woke up for brief moments since her procedure this morning. I think that the morphine has helped with the pain as well as kept her asleep. We are very happy with how well Gracie is doing following the injections this round. We hope and pray that the injections will be effective is shrinking the tumors on the retina as well as the visceral seeds. However, we know that Gracie will be fine, even if her right eye must be removed.

Thank you all for your prayers and concern. We continue to be amazed by the strength that our family and friends have provided us.

Getting Ready for Round 3

I have never been this worried to go start a round of chemo. For round 1 I was just anxious to get things started and kill those tumors. Round 1 went so well that I didn't really worry about round 2. But round 2 was such a horrible experience that I get literally ill when I think about having to repeat that again. It is so difficult to watch your child hurt that badly. Also her eye looked awful. I had no idea that an eye could swell that badly.  All in all it was a highly traumatic experience. So I'm dreading round 3.  James' mom flies in Tuesday to man the fort. We leave for Houston Wednesday afternoon (hopefully Grace will have enough time to swim at the hotel before going to bed).  Thursday morning Gracie is scheduled for her EUA and second subtenon injection of carboplatin (only one more after this).  That evening she can start infusions (if we get a bed). For those of you looking for specific things to pray for here is my current list.

1. That these treatments will be effective and Gracie will be able to keep BOTH eyes (always at the top of my list)

2. That she won't have to suffer the same pain and swelling she did during round 2

3. That if she does have to have that pain and swelling again that it won't all be in vain and that it means that the treatments are working

4. That we can get a bed on the cancer unit early on Thursday so that it'll be easier to manage Gracie for pain and swelling after the injection

5. That her mommy can be tough and not lose it through all of this

Although I'm dreading this, I'm also looking forward to getting it over with. After round 3 we'll be half way done treatments. After round 3 there is only one more subtenon injection left. There are a lot of things that we'll be celebrating after round 3.