Wednesday, August 27, 2008

August 27, 2008 (Wednesday)

At 5AM this morning my wife woke me up and said that she would like to go for a second opinion (Dr. O had recommended we go for a second opinion and even set up the appointment for today, but we were hesitant to have Gracie undergo more treatments then were really necessary). We had an appointment with another ophthamologist Dr. P at 9:30AM and it was 4 hours away. So we rushed to get things ready for an overnight trip (the Exam under anesthesia, EUA, would be performed Thursday). We left the older children with friends and headed out.
We were fully expecting confirmation of what Dr. O had told us. We asked Dr. P to perform a dilated exam today without anethesia so that she could tell us if it was obvious that we should perform the enucleation as soon as possible then work on the left eye. After the initial exam Dr. P informed us that she could see no tumors in the fovea region of the eye. Thus the central vision area for both eyes was potentially salvagable. She explained that chemotherapy would likely shrink the tumor closest to the optic nerve and then the cancerous cells could be killed. The viseral seeding (tumors floating around in the eye) were difficult to treat with chemotherapy but she thought that in Gracie's particular case there was a 50% chance the visceral seeding could be controlled and the eye would not need to be enuclueated.
Now this was her assessment based on a limited examination, information from Dr. O and the pictures of the retina we had brought. She wanted to perform the EUA tomorrow to make a final determination.
Dr. P also introduced us to an oncologist, Dr. M. Both Dr. P and Dr. M are the specialists for retinoblastoma at the hospital. Dr. P sees, on average, a new retinoblastoma patient every two weeks. Dr. M is the oncologist that works with them. Both of them explained that enucleation is not the first option for them. Treatment with chemotherapy before enculeation in fact was thought to reduce the liklihood of the cancer spreading during enucleation.
Dr. M also explained that the chemotherapy would likely be performed as an out patient service for three days straight every 28 days. The first cycle would likely be 6 months. It was continually emphasized to us that there was no gaurantee that we could save the right eye but there was a possibility. In addition neither doctor felt that there was any increased risk to Gracie should be commence chemotherapy in the week. Depending on how the tumors responded to the treatments, the decision to enucleate may be necessary.
Suffice it to say, we had a very positive experience and the prospect of saving both of her eyes is incredible. In fact Dr. P said that it was a miracle that the fovea in the right eye remains intact with all of the growths.
We are really excited about the treatment proposition from Dr. P as it means that Gracie may have a chance to save both of her eyes.
We know that tomorrow may bring a different story after a thorough exam however it is nice to feel optomistic about saving her right eye. It is often difficult to undergo the roller coaster of emotions from one day to the next however we pray continually for improvement and for understanding. We appreciate the prayers on our behalf and are confident that the Lord is mindful of our Gracie. He has truly blessed her and blessed us.
Gracie sleeping at our hotel. Such a little cutie. She would not take off her backpack, her crocs or let go of her sunglasses. I think she was afraid of us losing them and then I can hardly blame her for holding onto them. Sometimes I wish that not losing something was as easy as just holding on tight.

8 comments:

Travis and Mardi said...

Thanks for all these updates. We appreciate knowing how all of you are doing. Our prayers are always with you and we hope that the next day will bring some more hope for you. It is wonderful to think that there may be a way to save her eye. I think the word "miracle" is going to show up quite a bit when talking about Gracie.

Rachelle said...

Thank you for sharing your story with all of us. We will keep Gracie and your whole family in our prayers. Please let us know if there is anything that we can do to help.

Heather Guymon said...

James, Shane and I are keeping Gracie in our prayers as well as you and the rest of your family. We are so blessed to have you in our ward and please dont hesitate to ask us for anything. We are here for you day and night. Thanks for the blog and all the updates.

PureDesign said...

My heart and prayers go out for Gracie and your entire family. nothing in the world can prepare a father or mother to be able to endure what you are being asked to endure. No child deserves such health issues. I enjoy your amount of optimism in your posts. We must all continue to keep the faith strong.

Just continue to be grateful for the impact Gracie has had on your life and family thus far. She is a beautiful innocent and loving little girl.

Lyndsee Bates said...

It is so great that you are sharing this with us all!! You are amazing people and so strong!!! You all are inour prayers and know that we will be there at any moment to help an ANY time of need. Sending our love to you all!!!
Gabe and Lyndsee

stevet said...

grace is so sweet and we are praying for and thinking of her and your family. Your last thought in this post was so poignant... thanks for honestly sharing your emotions and for sharing your story... we want to help any way we can.

Aimee Winward said...

Usually, my words don't convey the exact thing I would like to say. But your last sentence, says everything. You guys are obviously in our thoughts and prayers. Please let us know if we can do anything to help, even if it is a little advice on this crazy thing they call the American Health Care system.

Colleen said...

Another thanks for sharing your story. You are in our thoughts and prayers. Poor little thing. If there is anything at all we can do for you...don't hesitate to ask.

Stuart, Colleen, Chloe & Family