September 9, 2008 (Tuesday)

Today had to be one of the hardest days that I have had to concentrate on anything. Gracie and her mom left for Houston yesterday. I had a really difficult time sleeping knowing that tomorrow might be the beginning of chemotherapy for Gracie. That is really what I wanted but it was still very difficult to think about. I tried to have a somewhat normal routine but basically waited anxiously by the phone and e-mail to receive any word. I knew that Gracie needed to check in at 7:15AM and spoke with her mom at 5:45AM as they were getting up and ready to leave the Ronald McDonald House. Apparently all went well with the kidney tests in the morning. Basically they injected some tracer chemical into Gracie and then took tests after 1 hour, 2 hours and 4 hours to make sure the kidneys were doing their job. So Gracie and her mom ate during one break, checked in with the cancer unit to make sure chemotherapy was a go this evening on another break and took the long 2 hour break to go clear out and clean up their room at the Ronald McDonald House. Gracie is her regular chipper self telling all the doctors and nurses that it is "nice to meet ya!"

Of course the tests were performed in the basement and with no cellular reception so I sat beside my phone but did not get any information until after noon when the tests were all done and they were on their way to be admitted to the cancer unit. Grace and her mom spoke with Dr. M, our oncologist and found out lots of good information. In addition to the drugs I already spoke about (Vincristine and Etoposide in the August 29, 2008 post), they will also be using Carboplatin. Basically, from what I understand, this drug messes with the cancer cells ability to reproduce by linking DNA strands and not allowing them to line up properly during cell division. The cells then cannot divide and the cancer stops growing and starts dying (YEAH!). This drug is not as commonly used for retinoblastoma but recent studies have shown that it may be effective in treating it. The doctors would like Gracie to be involved in a clinical study where Carboplatin is not only given intravenously but injected into the space around her right eye. This injection will have high concentrations of the drug and should therefore allow more of the drug to get into the vitreous fluid in the eye and battle the vitreous seeding. If you remember, the seeding is the hard to kill part. Dr. M had spoken of this treatment before but we did not realize that it was still in clinical trials and Gracie could be one of the first groups to use it this way. The injections will not occur until the second and/or third rounds of chemotherapy. I am excited about the prospect of saving her eye but it is difficult sometimes to think of having a new medical trial started on your baby girl. I want only the best for her and I know we are having some of the best medical professionals looking after her. That gives me a great deal of confidence.

Once in the cancer center, Gracie was given fluids intravenously (see picture below with tube into her chest). This was in preparation for the chemotherapy drugs. However some mix ups have occurred in that consent forms were temporarily misplaced. As of 10:30PM Gracie was being given some anti-nausea medication in preparation for the chemotherapy but had not started the chemotherapy. Once started it will go for 2 straight hours. The drugs contain some toxic chemicals and will be in her system for up to 30 hours following the administration of the drugs. So in caring for Gracie during and following the treatments we need to take special precautions to limit contact with any of the toxic materials.

My wife is in good spirits when I spoke with her and Gracie loves that she has sole discretion over the movies that she watches and the games she gets to play. So for now, life is wonderful for her. 

It is hard to be away from Gracie at this time. I am glad that my wife can be with her and care for her. I miss them dearly but find peace in knowing that we are fighting back. I am confident that Gracie will win this fight. There are so many who are giving so much of their love and support to her, how could she not win?