August 29, 2008 (Friday)

So this morning we had our first real appointment with an oncologist. Dr. L met us to discuss chemotherapy options. It was nice to hear more about how chemotherapy would work. Dr. L had not spoken to Dr. M (the oncologist we spoke with briefly on Wednesday) who would work with the ophthalmologist Dr. P on Gracie's treatment, but suggested that the two drugs we would probably use most are: Vincristine and Etoposide. I may be corrected on that but I think these are the two. Vincristine works but stopping the spindle fibers from forming during cell division and Etoposide stops DNA synthesis. Side effects do include nausea and vomiting, but those can be controlled by other drugs. In addition there may be hair loss and potential negative effects to hearing and kidney function. She will be monitored closely of course for all of these things. Even if we travel for the chemotherapy treatments to be near Dr. M, Dr. L will monitor Gracie between treatments.

The plan is to have 3 days of chemotherapy as an out-patient in a hospital or in a cancer clinic every 28 days. She should try to stay away from other sick children and particular for the 5 to 7 days during the cycle that her blood counts will be low. This low blood count period will likely occur 5 to 8 days following the start of chemotherapy. Dr. L spoke positively about us being able to undergo treatments near our home and have Dr. M monitor our progress however working that type of schedule out is proving frustrating. Dr. L was quite easy-going and very friendly. She took lots of time with us and addressed all of our questions. They had a child life worker there with Gracie and Gracie played with the Sammy doll. She inserted a port-a-cath under the dolls skin then administered chemotherapy, just as they will for Gracie. Gracie also loves the colourful decorations in the offices and rooms. We were shown around the treatment rooms and given free ice cream. The child life worker took information to set us up with several agencies that assist cancer patients and their families. It was a real positive appointment.

Right after the appointment I went to work for the first time in a couple weeks (I had been on vacation for a week and then with Gracie's diagnosis had not returned until today). It had felt like months since I had been there.

Throughout the day, my wife and Gracie's cancer care coordinator, was busy making phone calls and trying to set up appointments. By the end of the day it still seemed like Dr. M and Dr. L had not really spoken or at least weren't on the same page yet. We had two separate days in two separate cities for the insertion of the port-a-cath (I guess I should explain that this is a devise inserted just below the breast and under the skin that gives direct access to the subclavian vein, for either administration of chemotherapy or blood work). Base level testing of kidney and hearing functions were scheduled for Sept 9 and chemotherapy was to being with Dr. M on the 10th through the 12th.

So on the one hand we are really excited however this is a week longer then we really wanted to wait. Now all of the doctor's offices are closed until Tuesday (Monday is Labour day) and so our questions are likely to go unanswered until then.

I would still like to know

1) is there anyway to arrange so that chemotherapy can be done closer to home (like with Dr. L)?

2) are the chemotherapy appointment dates very rigid (i.e. do they happen every 28 days regardless of holidays, how Grace feels, how well the last treatments went, etc.)?

3) how much is this all going to cost (no one really seems to know this and while it is secondary to the whole matter I think it prudent to plan as well as one can)?

Hopefully those questions will come and maybe no one really knows the answers right now but hopefully in a few months we will be able to give someone in a similar situation a good idea as to what to expect.

So today was great in that lots of my chemotherapy questions that I had come up with were answered but then a bit discouraging in that it feels like we are being told to sit tight for a 1.5 weeks and wait for everything to start rolling. This is driving my wife crazy as she feels like if we're not killing the cancer it's growing. So let's start killing it now! However, we are really happy with the medical professionals that we have met and that have cared for us. We continue to be amazed and grateful for the love and support of family and friends. Gracie continues to be pain free and a real delight in our home. She has been so good at all of her appointments and accommodating during all of her treatments. As you hopefully know, we love Gracie and are finding out how many others really love her too.