Being stuck in the room you can only do so much:
Dress up ( the blanket is her LONG hair)
Manicures (Thanks Katie for being a good sport)
Pretend (we would sit on the feet of her tray table, and this was her steering wheel,
she would drive us to the store)
Then we finally broke out. This is Faye all dressed up with lots of places to go!
Can't forget to take Duck Bird out on the town!
Like I said, if the cough would leave we would be good to go!
Now onto the "Are You Ready for This" part of my post. As some of you have probably figured out or even heard we decided not to go the route of getting a bone marrow transplant. After many discussions with our doctor, and our doctor discussing Faye and her specific situation with other doctors, we decided that a bone marrow transplant was not the path to follow for Faye! Believe me it was not a decision Nick and I took lightly, nor our doctor! We feel a real sense of peace and comfort with our decision.
After that major decision had been decided we were then given the information that Faye might only get four rounds of chemo rather than getting the five rounds of Chemo. It was something that was brought up before we finished round three, but our doctor said she was still doing some research and trying to figure out what is best for Faye! So that, yet again, gave Nick and I something to think about. When we came back to start round four, the word got out to us that this was going to be our last round. Our doctor was out of town, and we wanted to wait for her to return so we could ask her all our questions. We were nervous to say the least. We thought: "Why not just do that last round to make sure we have taken all precautions against this cancer coming back".
In discussions with our doctor she told us that based on current studies the fifth round doesn't make much of a difference. It's one of the curses of getting AML. They still arent quite sure the best way to treat it. I guess the medical field in general always has research going on, trying to figure out the best way to cure cancer. The study has found that if the cancer was going to come back, it would come back wether you got that fifth round or not! Our doctor also explained that the current protocol treatment for the fifth round involves using higher doses of all of the medicine...so whatever the chemo hasn't killed up to this point, the fifth round would for sure get rid of anything left. Giving the kids such high doses of medicine sometimes proved fatal. The fifth round seems to see a much higher frequency of getting the strep mitis infection, which Faye got in the second round and was borderline on being sent down to ICU for a number of days. This infcetion itself is also fatal to many who suffer it in the fifth round.
So after weighing everything we have decided to put our trust in the knowledge of our doctor, and the many others in the cancer center that concur this is the right path for Faye, and Faye is done with Chemo! We are just waiting out the lengthy process of her immune system working it's way up, and when that happens we get to go home! Not for a few days, not for a week....but for good! It has taken a while for this to really sink in. Does it make us nervous? Sure. Is it crazy to think that living in the hospital is almost over....ABSOLUTELY! We were just getting used to all this! No more jokes of Nick and I having joint custody of our kids! I get the boys on the weekends! And he gets them during the week! No more nannies (friends, grandparents, aunts) at our house (not that this would have been possible without them)! The diffiuclt thing to swallow is there isn't a proven treatment method that is a gauranteed cure for every kid that has AML, or any cancer, with no risk to the child. Each has a different set of circumstances, responses, and reactions that affect the course. We feel very blessed to have such wonderful doctors who are so knowlegeable, well connected, and go the extra mile to look out for Faye's best interest.
After we go home and as soon as her counts get a nice good cushion she will have to get one more bone marrow biopsy to make sure everything looks good! It sounds like we will be routine visitors at the cancer center clinic for blood work and various other things for the first few months. After that the visits will be less frequent and in just 5 short years of negative test results we will host a graduation ceremony for Faye to celebrate the move from "in remission" to "cured"! I am sure it will be difficult to cope with the fears of relapse once we finish but we are just trying to enjoy every moment we have together. Cancer or no cancer, life is precious.
Time has flown by these past months and I am sure we will have more feelings to share as our time gets closer. For now, I wanted to let you all know what is going on. I could keep rambling...so many thoughts, and so many feelings! All we can say right now is Thank You!