Saturday, January 31, 2009
The first picture is one her mom took yesterday. The next three pictures are of Gracie today. She had a wonderful time playing outside in her swimming suit (Gotta love Texas winter). (The fourth one shows how much her hair is thinning out. Maybe next time you see a picture she will not have any hair left to see.) Then the final picture is from a few days ago. This is Gracie on my bed. That is her favorite place to go at night. She usually falls asleep there and then I take her up to her room.
Thursday, January 29, 2009
Sunday, January 25, 2009
This was taken in Houston waiting for her EUA (January 8, 2009). This is in the afternoon and Gracie has not eaten since the day before. She is having a lot of fun playing trucks with me as we are the only ones left in the waiting room.
This is also from our last trip to Houston (January 8, 2009). Gracie found a rocking horse in the cancer clinic and thought it was pretty fun!
Saturday, January 24, 2009
Wednesday, January 21, 2009
Monday, January 19, 2009
Thursday, January 15, 2009
Friday, January 9, 2009
Thursday, January 8, 2009
Now I (James) am writing. The internet connection dropped and Stephanie lost most of her post so I get to summarize the second time. :)
After the exam Dr. P (our pediatric ophthalmologist) came in to talk to us. We got good news and bad. The tumors are not growing and no new tumors have been seen! However, the tumors are not really shrinking or calcifying either. The right eye (the one with the largest tumors and viteral seeds) has seen basically no change since the first time Dr. P looked at it. The three rounds of injections, which ended in Dec, were suppose to work at killing the viteral seeds and reducing the tumors in that eye. It appears that the tumors have been fairly resistant to the treatments thus far. It is really good news that the tumors have not grown though. Some of the viteral seeds have calcium around them. This is a good sign for those seeds as that means they are unlikely to grow further and can be left.
It was hoped that all of the viteral seeds would calcify. Dr. P explained that she feels that many of the viteral seeds remain active but the tumors on the retina (including the one right next to the optic nerve) are somewhat of a mystery. She has considered the possibility that they are retinocytomas (tumors that are not growing and will not grow further on the retina). However, they are larger then most retinocytomas and have other non-classic retinocytoma characteristics, so she feels that the tumors are likely not just retinocytomas and further growth is limited with the current chemotherapy treatments. Vision in the right eye remains good and Gracie is not experiencing pain in the eye. Dr. P says there is no urgent need to remove the eye at present because the tumors are regularily monitored and there has been no tumor growth to this point. Additionally, Dr. P does not want to ennucleate the eye or procede with other possible treatments without a second opinion. A Dr. G (another ophthamologist that deals with retinoblastoma) from a neighboring medical facility is going to be asked to look at Gracie's file and pictures to see if proton beam radiation or some other type of treatment would possibly help destroy the cancer in the right eye. I am not sure whether Dr. G will have a look at the information before or after our next appointment but certainly before we decide our next treatment alternative for the right eye. Stephanie say Dr. M (our oncologist) in the hallway this evening and he reiterated that we do not want to remove the right eye when the tumors are not advancing and the eye sight is still so good! We think that is excellent news and hope that the tumors never progress (regression would be nice though).
So now the left eye. The left eye has two tumors, a small one and a medium-sized one. Dr. P said that the small tumor is basically taken care of. It is still a little thicker than she would like but she thinks the tumor is dead and will not be too much of a concern from now on. The medium-sized tumor is not responding all that much, if at all. It is not growing at all either so that is really positive. Dr. P again lasered this tumor in hopes that some progress can be seen at our next appointment (in four weeks). She thinks that we should complete our current treatment schedule (one more chemotherapy session) and then decide how best to proceed. There is the possibility that this tumor is not growing so we could just leave it and monitor the situation closely or we could try a plaque. A plaque is a radioactive patch that would be placed on the outside of the eye, directly behind the tumor. This would release radiation onto the tumor for a few days and hopefully kill the rest of the tumor. Dr. P sends all of her patients that need this treatment to Dr. G in an adjacent facility. Dr. G deals with radition in retinoblastoma patients. So while we hope that the medium-sized tumor starts to shrink we are pleased to know that other treatments are readily available close by.
In many ways I was very pleased with the results of today. It is comforting to know that the tumors are not spreading and that there are many good options, not only for Gracie but also for saving her right eye. We continue to hope and pray that things will go well for her in preserving her vision in both eyes!
After our discussion with Dr. P, I went and picked up some food for us while Stephanie waited with Gracie in recovery. Gracie woke up quite groggy and her eyes were in some pain from being poked and prodded. She quickly drank 3 juice containers and a popcicle before her bed became available at 5:45PM. There was a bit of commotion in the recovery room as the nurses there thought we were being discharged and were not prepared to get us to a room. Eventually the correct paperwork was found and a room became available for which we are very grateful. By the time we were in our room Gracie was back to her normal self. She was happy to talk to all of the doctors and nurses and was eating and drinking lots. She loved playing games, coloring and making bead necklaces in the play room on our floor. Later she watched a movie and played games on our phone until chemotherapy started at about 10PM. She fell asleep about then and has slept through the bulk of the treatment. It is nice to see her so happy and well but will more work to entertain a lively little girl for the next 24 hours than it has been the previous three visits.
We are all extremely grateful for the many prayers and much concern for Gracie over the past little while, especially the past few days. It has been an anxious time for me. I have had a hard time thinking about much else over the past 48 hours. Despite having lots of other things that I should think about, I could not help but think about Gracie's future and some of the decisions that we may have to make. I am glad that the tumors have not grown at all and have given us a greater variety of treatment options. I know that Gracie has been blessed so much! I continue to hope and pray for Gracie and her eyes. I am grateful for the optimism and hope that Stephanie and Gracie's sisters radiate. I have surely been blessed and know that Gracie will have lots of love and happiness no matter what. I look back at all of the things that have happened over the past 5 months and all of the wonderful people that have helped us so much. I cannot say how thankful I am.
Lastly, as I think about all of the things that have happened (and have not happened) over the past 5 months, I cannot help to see the many miracles that we have seen. For Gracie to have gone through these many months and never really getting ill, despite everyone else in the family being ill various times have been such a blessing. For Gracie to have remained always cheerful and upbeat throughout this whole ordeal has been amazing. I am always so impressed when she happily comes to the hospital or to the blood clinic because she is excited to she her "friends" again. She is a real sweetheart. For Stephanie to have seen the tumor at the time she did and for all of our appointments to have worked out as they should, which demonstrate how much we are cared for even when we do not really know it at the time. And so I thank my Heavenly Father- for a great family and many great friends, for peace and hope in times of uncertainty and for the miracles in my life.
Wednesday, January 7, 2009
So from our 5 year old we have now got a clear picture of what exactly happened to cause this chaos. We don't have a TV so our kids have to watch movies on our computer. At the time it was kept in in the living room on a consol instead of a desk because it takes up less room. As it's an imac it doesn't really have that much bulk to require a desk. Gracie was sitting on the floor watching the movie, our 5 year old was sitting on the couch. Our baby was just cruising around. Now he's shown interest in the keyboard and mouse before, but never the computer itself. Until then. He reached up and pulled the entire computer off the stand. Now if you aren't familiar with imacs I'll just clarify that the screen IS the computer, and it's reasonably flat but it's still a 24 in screen. And now that we've looked it over really well we realize that the edges could be very sharp if it happened to land on your head, which is what happened to poor Gracie. So yesterday James made an essential purchase of a new corner desk (thanks to Craigslist) and the computer will now be stored in our bedroom on a deep desk and I don't see our baby being able to reach it to flip it over any more. (We can even hide the keyboard and mouse easier!) This was completely edicted as a safety necessity.
When our 7 year old was walking home from school with James and he told her about the accident her first question was "Is the computer okay?!" So in case any of you are also worried about the computer. It can take a licking and keep on ticking. It kept playing the movie (Dumbo) throughout the whole ordeal.
Gracie also was playing in a laundry basket today and flipped it over. She cried and we knew she was hurt but it wasn't until a few minutes later when I saw blood on my mom's shoulder that my mother and I realized that she was bleeding. Thank heaven's it was only a small split lip. But we figure we're trying really hard to bring Gracie back to the clinic tomorrow just as pitiful looking as we can make her. She is doing just fine though and recovered from both of her accidents very quickly. Her head still has a black and blue goose egg, and of course the laceration is still highly visible, but it is well approximated so I guess the glue is holding strong. No signs of infection. She's happy that the doctor made her head "all better". We're happy that no matter comes her way she takes everything in stride.
Gracie will not be going for her EUA until tomorrow afternoon. It seems that there was a bit of a mix up. Katie our nurse practitioner who we always work with started maternity leave at the end of December (and we wish her well), but because she was gone no one remembered to make sure we were on the surgery schedule for tomorrow. This was compounded by the fact that the surgery scheduler who has always scheduled us no longer works at Texas Childrens. I usually get a phone call by noon the day before the EUA telling me when to have Grace at the hospital. When by 1:30 no one had called me I started making phone calls. That's when we realized that she had been completely left off of tomorrow's schedule. The new surgery scheduler felt horrible and repeatedly apologized to me. It's not a huge deal. I'm just glad that I thought about it at 1:30 instead of realizing at 5 when no one was in their offices any more and we couldn't solve the problem. Thankfully I remembered in good time, and a potentially very bad situation was remedied. If it wasn't then I'd really be expecting some apologies. As it is we can deal wlith it. They usually schedule the younger kids for earlier in the morning, but because the slots were all taken all ready they just had to tag Gracie onto the end of the day. It's unfortunate because Gracie will have to be fasting for a really long time, but I'm still just grateful that it's getting done tomorrow. I need to know how these eyes are doing!
We're actually sitting in the hotel room in Houston right now. James and Grace are both asleep, I'm still wide awake. There is always at least some degree of anxiety before checking in. Actually I was so nervous a few days ago that my stomach was continually in knots, but as of last night I started doing really well. All the worries were replaced with peace. It happened while I was saying my bedtime prayers. I wasn't even praying all that earnestly, it's just that I was praying. I still don't know how things will go tomorrow, but the constant anxiety I was feeling is now gone. It's such a blessing from God. No matter what comes tomorrow, Gracie will be okay. She's in God's hands. She's His child and He can take better care of her than I can. Sometimes that's a hard thought for me, because I just want to make her all better. But it's not hard for me tonight. James and I have done all we can to help Gracie keep both of her eyes. Now it's time to find out what the Lord really wants to happen. And I have peace with this. Perhaps now I can go and get a good night's sleep (or part of one).