10:57 PM Well, we've survived our first post-treatment doctor's visit. I was going to say "clinic visit," but it really doesn't take place in a clinic, which was a bit of a surprise to us all. Sophie's appointment was at 1:30pm today, so we left at 11:15am (a little later than we like, but par for the course) and ate at the McDonald's in Muleshoe on the way. Sophie got to play a while in the play area, so she was happy. It took us two hours and fifteen minutes including the lunch stop. In other words, we rolled into Lubbock right at 1:30pm. Have I mentioned that I hate to be late for anything? Parking was easy, and getting to the doctor's office was also quite simple--straight across the skybridge from the parking deck, turn right down the first hallway and the office is the first on the right. We're not in Chapel Hill anymore--I used to get frustrated that it took 1 1/2 hours to get to Chapel Hill and another 45 minutes once you get to the parking deck to find parking and get into the clinic.
The "clinic" was really just a doctor's office. There are two doctors there, two nurses, and two administrative assistant types. We were the only family there the whole time. Of course, there was tons of paperwork to fill out and sign, and eventually we went back for the check-up. Our nurse's name was Sheila, and she was very good at letting Sophie explain how she is used to getting "poked": slow, slow, slow; first we have to pick out the Band-Aid; Sophie does not like to watch and needs to have her head covered up. Sheila played right along and even told Sophie that she would "poke" on the count of three. Sophie tensed up and cried a little bit, but thankfully, the stick stuck and Sheila was able to draw blood.
We then met with the doctor, and we have to admit, she's no Doctor Gold (our Oncologist from UNC). We miss Dr. Gold, and he is really one of a kind--gentle, very perceptive, funny, great with the kids. Our new doctor is nice and we feel confident in her skills, but she's not exactly a people person. She examined Sophie and covered how they would like to do follow-up (six months of the anti-biotic Septra, monthly follow-ups the first year, tapering off from then on). She also said that three years post-treatment, providing there have been no relapses, we can call Sophie "clinically cured." In the meantime, she is "clinically in remission." Then came the scary stuff. Ten percent of children relapse. One in ten. We had not heard that and probably didn't need to hear it. Ten percent is too high, after all that these kids have been through. Then, more scary stuff. The first six months post-treatment are critical because a relapse in the first six months tends to be "more aggressive." Not what we want to hear. We haven't really even celebrated getting through treatment! In my head, I can hear Dr. Gold saying these words, "Sophie has responded well to treatment. She's going to be fine. You don't need to worry about any of that." I know that he's being reassuring, because worrying will not keep a relapse from happening. I'm going to listen to Dr. Gold.
Before we left, we got Sophie's counts back and they all look good. The numbers are still less than "normal," but we're happy with where they're at. Her ANC (the measure of her immune system that we tend to watch most closely) was 1.9. I think that's the highest it's been since January of 2005. So that means that Sophie's immune system is coming back nice and strong. Hooray for Sophie!
All in all, it was a long, emotionally draining day. Susan and I were both physically drained from the 3+ hours in the car. We were also emotionally drained from the stress of a new medical situation and just all the uncertainty. I feel really, really happy and glad that we've got this new experience behind us and now we know how to get to Lubbock and what to expect. I'm just surprised at how emotionally spent I feel tonight.
Thanks again for checking in with us, and thank you all so much for your thoughts and prayers today--we needed them more than we thought we would!