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. 

Giving Platelets

Well, since Gracie's blood counts were so low today she could not go for her dental appointment. She has a bunch of work that needs to be done on her teeth but the dental procedures pose a risk of infection for someone, like Gracie, who is immunocompromised. So we decided to make good use of our time and try to get a PhD! This is a picture of Gracie at the Blood and Tissue center in Austin Texas. I went there with her so that I could donate platelets. Gracie and others in her situation need platelets when their counts are low (Gracie has platelets infused last Friday). Platelets do not have a long shelf life and require more time for the donor, but less blood. So we thought that it would be good if we gave platelets when possible to help others like Gracie has been helped. We also would encourage you all to donate platelets (or blood for that matter) when you can.

Anyway, this is a picture of Gracie right outside the room where I donated. They are encouraging people to donate by giving PhDs to those that go so many times throughout the year. I was excited because I am in a PhD program right now and thought that maybe I could just change majors and be done right away! They fooled me though and I only found out after my donation that you needed to donate so many times in one calendar year, not just 365 days. Now the pressure is really on because you can only donate every 10 days up to 24 times a year and the calender year is soon ending. That leaves not too much time to get it done! I still think the poster is pretty funny.

Anyway, the point of this blog is to tell you all that I am wimpier than a 3 year old. Here is why.

We thought that Gracie might like to see that sometimes her dad needed needles (or "little pokes" as she calls them). So I called her over when they were going to do a finger prick. I really hate needles and pokes so I was really trying to be brave for her. The lab tech asked Gracie if she thought it would hurt and I immediately said, "Yep." She looked at me and told Gracie that it wouldn't hurt. Well, it did and I did not like it. Neither did Gracie, I think. She was interested in the whole affair but did not really want me to get pokes either. Though, she was excited to meet all of the techs and get new friends! She is such a little sweetheart.

Pretty soon they had me in a nice big chair and brought out the needle. I was ready to get up and leave but Gracie was right there watching me and so I stayed. I was probably a really annoying donor as I kept telling them that it was sore or the pressure was too great. I did not know how it was suppose to feel so I told them how it felt. One time the tech asked, "Does it feel like there is a needle sticking into your arm?" I agreed that it did. She glanced down at the needle sticking out of my arm and said, "That is pretty normal." I had to sit in the chair about 1 hour for the entire donation of one unit of platelets. My platelet count was already low so they could only take one unit even though they thought I would be able to give two units at the start of the visit. The process involves a machine drawing blood from you and separating the platelets out before returning the rest of the blood to you. So the machine constantly pulls blood then infuses blood from the same site on your arm. Returning the blood actually felt the most unpleasant as the blood was cooler and put pressure on your blood vessels. It was worth it though and, since the appointment, I have only felt uneasy when I think about them taking my blood. Overall the process was pretty painless except if you are a wimp like me and hates thinking of your blood cruising around in some machine outside of your body.

Gracie is even more my hero now as I have seen her give and receive blood and other fluids many, many, many times over the past two months and, while she dislikes it, she is ever so co-operative and always cheerful after its over. Speaking of Gracie she has been a bit tired today, but that is to be expected with low blood counts. She was quite the entertainer at the blood clinic. While there she would point to me and say, "That's my dad. He is MY James." Then she would proceed to say that her mom belonged to her sister but that I was hers. I am quite OK with that as she is my special little girl and I love her so much. To be entirely clear to all of you, I actually belong to Stephanie but Gracie can borrow me when she needs to.

Thank you all for your support and love. Gracie is doing marvelously. The swelling in her eye has been reduced each morning this past week and she is still full of energy and joy. She was excited last night to be interviewed by "Make-A-Wish Foundation." She told them that she wanted to go to Disney World. She is thrilled that she may get to go there soon and celebrate with her family. While at the interview, she received a doll and a magic wand, which she has played with every since!

Below is a picture of Gracie before her sisters left for church last Sunday. I thought it was cute so I added it in. Gracie misses going to church with them but loves to get in her dress and get ready to go each Sunday!

Today's Counts

ANC - 520

Platelets - 171 (Good thing given that she got whacked in the head yesterday and has a bruise!)

Hgb - 8.8

(Note that we got these results at about 1 pm. James finally found an ally in the lab so we can get things done! Good thing James makes friends where ever he goes. Gracie's smile is kind of helpful too.)

A Cute Little Pumpkin

Grace and her sisters all dressed up and ready to go to our church "Trunk or Treat"

Eye Hemorrhage

So I'm not sure what Gracie's platelets are now that she's had her transfusion, but they must still be low as yesterday her eye hemorrhaged. Basically the sclera (white part of the eye) started filling with more blood. The bleeding has slowly continued throughout today. Maybe the bleeding hasn't continued, but the blood has spread further in the sclera. I called Dr. O. to ask if we should be concerned and she said if it's not affecting vision she wouldn't worry unless the eye actually started to bulge. What caused the hemorrhage? With as low as her platelets were it could have been spontaneous. Tonight I just compounded the issue when I was demonstrating my light sabre maneuvers to James and the girls. Our phone has a light sabre app complete with sound effects and music and I didn't know Gracie was standing right beside me while I was doing it (come on little boys aren't the only ones who played Star Wars growing up). Of course wouldn't you know I hit her right in her right eye. I didn't think I hit her that hard, but I guess her eye was more tender than she's been letting on. I felt absolutely horrible. Especially after all the jokes about if she's going to injure her eye make sure it's her bad eye she injures so we can preserve her good eye (there is actually an element of truth to that). But she seems to have recovered just fine and she doesn't even seem to be keeping her distance from me any more. When they enucleate an eye the child is always required to wear glasses after to protect the remaining eye. I need to look into getting her glasses to protect her left eye even if we don't enucleate the right eye as there will be some element of danger for a long time after chemo is over and I'd hate for anything to happen to the better of the two eyes. Childhood is filled with accidents. 

 We wish that the low blood counts would tire her out just a little bit so that she wasn't so extremely active still. It would be a lot easier to prevent injury that way. Today we had her out on a walk and she was jumping over and off of huge boulders. Lovely considering if she cut herself or had internal injuries she'd just keep bleeding. Oh well, what's one to do. We're certainly glad that she's taking everything in stride (or leaps and jumps). We are so very blessed. 

Stephanie

Pics from the cancer clinic

Apparently the pictures upload in reverse order but you get the idea. Gracie had such low blood counts that she needed a transfusion (which came after all of these pictures). One would think that she would be tired and just want to watch a movie or something but I cannot get myself to say no when a sweet little Gracie says, "You want to play catch with me?"

Gracie pushing the lawnmower all over the center. It did not make enough noise on its own so she would supplement with squeels and lifting the front end of the mower and then dropping it!
Gracie finds the toys in the big common area of the cancer clinic!
This is Gracie and her Sammie doll. Sammie is the doll that has a port-a-cath. Gracie gets to clean and access the port and then give drugs to Sammie. It helps her to understand what is being done with her. She loves the doll and asks for him as soon as she walks into the clinic.
This is Gracie taking her shoes off at the clinic in order to get weighed. She has the routine down at this point and is very clear that her socks do not need to come off, the blood pressure cuff should go on the left arm (not the right and certainly not her leg) and the thermometer never need go in her mouth as an armpit reading will do- in case you all wanted to know.

Cancer and all the little things

OK, I know that I have not really posted for a week. Stephanie did an excellent job of bringing you all up to speed on the latest events of this experience on the last three posts. It has been kind of crazy for us over the last little bit so I just have not taken time to post what some would call the "routine" things that Gracie gets to do now.
I have found it ironic to think of how the word, routine, gets used sometimes. For example getting an infusion of platelets and getting blood work every week are apparently routine. I know that means that those things are done frequently and much is known about how to do them, etc, etc, but they have never been part of my routine! I never really thought much about what cancer treatment really entailed before August of this year and then even after we knew that Gracie would receive treatments I thought that we would have a few days of chemotherapy infusions, then wait around with a sick little girl until the next infusions. Well I have found that it entails much more than that. For example, since the last trip to Houston for chemotherapy (we came home 2 weeks ago today), Gracie has received a shot on Sunday; medication twice a day on Mondays, Tuesdays and Wednesdays; eye drops 4 times a day for one week and twice a day for the second week; a follow-up doctor's visit on the first Wednesday; CBC (complete blood count) taken on Thursdays which can take anywhere from 15 minutes to an hour waiting your turn; the first Friday was a nerve racking day as Gracie's eye started to swell again; each day after the swelling seemed to be getting worse in the morning and then return to normal throughout the day; since Gracie's immune system is compromised we have to be careful who she comes in contact with and where she goes; Thursday (2 days ago) the swelling is so bad in the morning that she cannot open her eye so we talk to the doctors again; Thursday afternoon we find out that Gracie's blood counts are very low and a blood transfusion is required; Friday the swelling is even worse than Thursday and we spend all day in a cancer clinic doing tests and getting a platelet transfusion.
I am sure I missed something in the list. I should point out that Gracie has been wonderful throughout all of this and I am happy with how things are progressing and the care she is getting. It is just amazes me that there are so many little things that crop up almost daily that need to be done because of the cancer Gracie has. Much of what needs to be done are not even that time-consuming but they take one away from other responsibilities and activities. Then even, when nothing "extra" needs to be done the cancer or Gracie's care is on my mind. Sometimes I still worry about how the treatments are affecting her and how effective they are being. I continually wonder what we should do that would be best for her and if there is something we are not doing. So sometimes when I look back over a week and think of all of the work that I wanted to get accomplished, I see how little I actually got achieved and wonder where I wasted all my time only to realize that all of those little extra things add up to more than I had anticipated. I am not trying to blame anything on Gracie or even my lack of accomplishments on her cancer but rather trying to point out how different living with cancer is than what I thought it would be like.
Suffice it to say that the last week was really quite busy, especially for an off-chemotherapy week! Most of the events were small stuff that needed to get done. Perhaps stuff that is not so worrisome for Gracie's medical team but stuff that we just need to keep doing to keep fighting off her cancer. Which fight I am confident that Gracie will win. I am so pleased with how things are going and the care we have been getting. I wake up in the morning and get ready. Not long before I leave I can guarantee that Gracie will wake up and come find me. While it is sad to see her right eye swollen so big, I am almost excited to think of those drugs killing the cancer in her eye. I do not even know if the drugs are still really in her eye or if the swelling has anything to do with battling cancer, but the swelling reminds me that we are doing everything we can to save her eye and how thankful I am that the cancer has been found.
On that note, I thought I would just mention how excited we all are for another Gracie (a little girl about 5 or 6 years old). A friend of ours has a niece named Gracie that was undergoing chemotherapy for the past few months. Her story is not really mine to tell but when the cancer was found they told her and her family that they would do 5 rounds of chemotherapy and then need to assess how advanced the cancer was before proceeding onto the next phase. Gracie recently completed her 5 rounds and the doctors did their tests. They told her that they had never seen that type of cancer respond so quickly and there would be no need for additional treatments! We met Gracie for the first time last night at a Halloween party. She was a cute little tinkerbell and came over to tell us the good news! She told our Gracie to keep fighting and "Beat that cancer." We are so happy for her and her family. We are happy to be reminded again about the resilance of little children and that miracles do happen!
As always, Grace and our family appreciate your love and support. I know that many of you have been checking the blog and apologize for the lack of posting over the past week (everything has just been routine :)). Gracie is a real trooper and a joy. Watching her in the cancer clinic as she ran aroung throwing balls and trying to bounce like a ball was so fun! She was suppose to be so tired and weak but she just had to be herself. That is just how we like her!