Day 1 Round 5

We arrived at the hospital today at 0830 so that Gracie could check into the cancer clinic and get seen by an oncologist before we had to go to preop. All looked well during Gracie's assessment. Her ANC is still only 960, which is the lowest it's ever been for chemo. But she's doing really well. Her blood for the genetic testing was drawn. Hopefully we'll get those results by mid February. We're really excited to be able to genetically clear all the rest of our kids and their cousins for risk of retinoblastoma. Here's hoping she has a mosaic mutation, which means that it won't be in every cell. After the blood draw and oncology assessment Gracie had to arrive at preop at 1130. We saw Dr. P and her residents really soon after our arrival and we figured we might be able to get her in a little early. Boy were we wrong. Gracie didn't get in for her EUA until 3:30. Keep in mind she'd been fasting since 9pm last night. James and I were hungry so I can't imagine how she was feeling. But she's such a trooper, she only said she was hungry once, maybe twice. And she didn't whine about it, she just made a statement that she was hungry. The EUA took about an hour.

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.