I heard back from the nurse at Vanderbilt, which is the cancer center in Nashville. I have an appointment scheduled with them for March 1st at 2pm. It actually works out perfectly. Odd, right? I know, so maybe this is a sign. We will have to fly out of KC each time because it is a third of the cost of where we usually fly out of. Luckily, my folks aren't to far, my sister is not to far, and my BFF is pretty close too. So, we have lots of option for babysitters:) Especially this summer when Aunt A is off:) Hint, hint:)
Anyway, we will head toGWL on Sunday because we had already planned a night at Great Wolf Lodge as our Valentine's Day present for the kids. Our kids don't need more toys, but we can never get enough family time! So we will do that on Sunday, on Monday my folks will meet us and pick up the kids, we will drive to the airport. We will fly in to Nashville, take a cab to the Cancer Center, meet with the Dr, fly out that evening then go to my parents house to stay the night. See, it's working out.
At the appt. they will do a Genome test to make sure I qualify and La Roche (the company that makes the RO5 trial drug) will also do their own testing to make sure that I am, in fact, B-Raf positive. The Gnome test takes about 8 days to get back. In the meantime, we just wait.
If I qualify we will make another trip down to Nashville to get started on the trial. The trial requires about a 20 day stay in Nashville because I will have lots of blood drawn every.single.day. I will be hospitalized a few of those days, however, I shouldn't be to sick. They just have to really monitor my diet those first 20 days. By monitoring, I mean make sure I don't drink any Diet Pepsi. I know, shoot me now right?! However, I did it while on Biochemotherapy, and that was by choice, so I know I can do it on this. I think I may be able to drink the Caffeine Free, which isn't the same, but it will work. I don't necessarily drink it for the Caffeine, I just love the taste!
We are hoping (and praying) for several things right now. One, that by the time we find out that I qualify, that there will still be a spot for me. Two, that I won't be extremely grouchy from no caffeine! And three, that with the help and support of my family, that over those 20 days some (or several) different people will be able to bring the kids down to Nashville and stay with them (and us) while I am doing all of this. I do NOT want to leave the kids for that long. Quite honestly, I'm not sure I can. So, since the flights are so cheap, we are hoping that after we get this all figured out we can set up a schedule so that they can be with us. At this point I am not going to stress out about that. No sense worrying about that if I don't even get in to the trial!
I am also waiting on an appt from MD Anderson for the GSK-B inhibitor trial. For some reason they are taking their sweet time in scheduling me.
I am truly putting all my faith in God. I know that He has His reasons for all of this. What ever is supposed to happen will happen. However, I am not above pushing them along:)
Please continue to pray. Some days this fight gets so old. I have my good days and I have my bad days. But, no matter what kind of day it is, when my beautiful 2 year old and my handsome 4 year old give me one of their great big bear hugs and slobbery kisses, I can't help but dig in my heels and fight a little harder. Thank you K and E for making your Mama fight a little harder. Without you I'm not sure I could do it. I love you both.
back to school
1 week ago