Sophie's World

11:17 PM Just a quick post because it has been a while. We had a good visit in Albuquerque with our friends Barbara and Jeremy (and Jacquelyn and Jacob), who kept Elisabeth for the week. Unfortunately, Elisabeth was not feeling well part of the time, so it wasn't as enjoyable (for everyone) as we had all hoped. Susan and I celebrated our anniversary by going out with the McRae's to our favorite New Mexican restaurant (Sadie's). We really enjoyed that!

Things are going well here. Everyone keeps asking if we're settled, and I think we are, although there are no pictures on the wall (yet) and we unpacked a couple more boxes (books for the girls' room) today. As Susan said today, we'll be unpacking boxes for a long time, but we are indeed settled. We're so settled, in fact, that we're busy doing other things and ignoring the boxes that probably should get unpacked (and the pictures that probably should go on the walls).

Our big excitement this week (other than Vacation Bible School) is that Sophie goes for follow-up (her first one) on Tuesday. We've been looking forward to this for some time, but it kind of creeped up on us here at the end. We've been talking to Sophie about it, and when we finally got the appointment made, her first question was whether or not the doctors would be "good" or "bad" at this new place. Of course they're going to be good, I told her. We're hoping and praying for a good experience and a good report. I'll be curious to hear how Sophie's immune system is doing off of treatment. For the most part, we go about our business, but I guess the specter of a relapse will continue to follow us around for a while. While that does give me pause, we're confident that all shall be well.

Thanks for keeping up with us. It's nice to know that so many folks from all over (and so many from our new congregation) are checking in from time to time!

Posted by Randall at 12:17 AM | Permalink | Comments (1)

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!

Posted by Randall at 10:57 PM | Permalink | Comments (2)

7:15 AM CDT: We made it through Vacation Bible School! I would say we made it through without a scratch, but just as the kids were finishing the opening number for the parents presentation, someone accidentally stepped on Sophie's ankle and scratched her skin. She wailed and refused to participate in the rest of the presentation, but I did calm her down enough to get her to come back inside and watch. I taught a rowdy bunch of kids who finished kindergarten or first grade. We had 14 on the first two nights, 10 on the third, and 9 last night. Although they certainly tested me on Tuesday (that was the day we went to Lubbock, so it may have been just as much about my emotional states as theirs), I really came to love and appreciate those kids by the end of it. I'm going to miss them!

It was another opportunity to meet new people, since quite a few of the kids don't normally attend our church. Getting to know the parents last night was great. I also had a wonderful time getting to know the woman who taught the class with me--Kristen. She and her family live just two blocks away, and we thoroughly enjoyed each other. Although she doesn't go to the church, I suspect we'll be seeing more of each other.

Randall conducted his first funeral on Wednesday. It was at our church, but it was mostly coordinated by an Episcopal priest whose church was too small to hold the expected crowd. The man who died was a big name in our community--he started quite a few businesses and lots of people knew him (although we didn't). Seeing the order of worship for an Episcopal funeral was very interesting. At the funeral, and afterwards at the lunch, I met even more people from the community. I really hope I can keep all these names straight. The population of this town is only 1365, but I suspect I've been introduced to half of them since I've been here. Maybe not that many, but sometimes it feels like it!

Randall put the address for this web site in a recent church newsletter, and quite a few folks have mentioned that they are starting to visit and read through the history. It really makes me happy to think that people we love from our old church and our new church (not to mention family and friends from even further back) are all keeping up with us this way. What an amazing connection! As always, we appreciate your comments, prayers, and continued presence in our lives.

Posted by Susan at 08:15 AM | Permalink | Comments (3)

7:00 AM Central Time: Once again, it's been forever since we have posted, which is mostly because nothing really exciting has been going on (not such a bad thing). The girls went to their summer camp, while Randall and I worked. Last week was especially busy at work for me, so I put in a lot of long hours. I switched to cable for Internet service, and the speed is slightly faster for less than half the price. In fact, we upgraded our TV cable to the HD service and got some more channels that the kids will like, and all of it together (TV and Internet) is the same price as what I was paying for DSL (and still am--need to cancel it). It's still not really fast enough for what I need to do, so I may upgrade the cable speed (still cheaper than DSP though).

We're getting more settled in the house. We got out lots of artwork and figured out where we want it to go--we even hung some. We ordered and received some slipcovers for some of our furniture that has gotten kind of worn over time (or by cats). They look really nice!

Sophie has come down with something, so she's been up most of the last two nights. She's had a fever and has felt nauseated. We're been a little worried, because her immune system is still somewhat suppressed, and the doctor in Lubbock said we only needed to call her if the fever goes on for several days (we used to have to call at the first sign of any fever over 100.5 and get a blood culture immediately). Even though it's nice not to have to drop everything and go, I think there's a part of us that would like to have a doctor see her and start treating her if it's bacterial. But I also don't want to have to go to the peds ER in Lubbock (these things always happen on the weekend!). Randall said last night that he regretted letting her swim in the wading pool at a birthday part she went to on Tuesday--no chlorine, probably lots of germs. He also said he was feeling paranoid that if a virus triggered the leukemia the first time (no one knows for sure, but that's one theory) that this might be a virus that triggers something else.

But she's also milking this situation for all it's worth. We have a rule that she can't sleep in our bed (because then Randall ends up sleeping somewhere else). So, last night, she was in our room at around 4:00 AM, asking to sleep with us (seeing if this illness will help bend the rules). Randall said no and offered her several options (make her a bed on the couch or on the floor in our room, or go back to her own bed). She was quiet for a while, and then she said (literally), "I guess if you won't let me sleep in your bed, you just don't care if I'm up all night long." Well! Randall didn't care for that very much. We eventually got her settled in her own bed. Of course, a half hour later, she yelled out to me that she was going to throw up and needed her bucket (3 feet from her, all the way across the house from me). I asked her if she wanted some Zofran (powerful anti-nausea medicine that she has been reluctant to take for some reason). She thought about it and then said, "Yes, but I really don't think it will work." I haven't heard a peep from her since then.

Elisabeth has been a great big sister through all of this. She's being very tolerant (mostly) of Sophie's whininess, and several times when Sophie clearly doesn't feel well says really comforting things to her. We've been pulling toys out of the garage that they haven't played with in a while, so they've really been enjoying that and playing nicely together.

Posted by Susan at 08:01 AM | Permalink

10:45 PM Central Time: Update on Sophie--she did mostly okay today. She and I stayed home from Sunday School, and she slept soundly. She woke up feeling pretty well, so I took her to church (I'm glad I didn't have to miss hearing Randall preach). About halfway through the service, she fell asleep in my lap and slept until well after church was over. We went out to lunch with three families from the church (pretty much our age). It took forever for the food to come (it was Chili's--what did we expect?), but we had such fun talking it wasn't so bad. We finished up around 2:00 and one couple took Sophie and Elisabeth home with them, so we had the afternoon to ourselves. I did a litle work, and then we sat and talked for a long time. Very nice! Then the couple who took Elisabeth and Sophie were hosting a fellowship dinner, and lots of people came. We just got home, and the kids are exhausted (they swam in the pool nearly the whole time). Sophie complained several times today that her throat hurts, and she says it stings when she goes to the bathroom. I think we might be taking her to the doctor tomorrow. Mostly, I hope all this activity helps her sleep through the night. We all need the sleep!

Posted by Susan at 11:42 PM | Permalink | Comments (1)

7:30 Central Time: In my last post, I mentioned that Sophie's been sick. She seems to be feeling better, but she's also had a pretty bad problem with hives and itching, pretty much ever since we moved here. It seems to be worse when she's been out in the sun or gets upset (heat-induced?). The antibiotic she's been taking since the beginning of treatment has a tendency to cause sun sensitivity, and we had been wondering if somehow she's becoming allergic to it. We gave it to her on Monday, and by the time she got home from day camp (where they had been playing outside a lot), she was nearly hysterical with itching. So I called the doctors in Chapel Hill to ask for advice (they said I could that anytime, even years from now), and then I called her new doctor in Lubbock. Her old doctor talked through several possibilities and thought the Septra could definitely be causing problems and thought we might want to think about stopping it. Her new doctor wasn't as convinced about that but thought she should see a dermatologist and set her up with an appointment this morning. We did skip the Septra yesterday and kept her home from camp (they were going swimming), and she was fine all day (and is fine now). But Randall is getting ready to take her to Lubbock (90 miles away) for the appointment. Now that she's not itching at all, it seems like a waste, but maybe they can give us some ideas. Sophie hopped right out of bed this morning and was in a fantastic mood. What a change from this weekend, when she was a total crab!

Posted by Susan at 08:29 AM | Permalink | Comments (2)

7:30 PM Central Time: So the latest drama in Sophie's World is that Randall took Sophie to the dermatologist yesterday for the itching I mentioned in our last post. They didn't do any testing or anything but agreed that it could be the Septra (but didn't suggest we stop giving it to her--we'll revisit that with her oncologist). She prescribed Zyrtec, and Randall picked some up last night. Of course, with being home for two days and no sun exposure (and having taken a one-day break from Septra), she hasn't been the least bit itchy. Randall took both girls to camp this morning, and we had plans to eat lunch with them (some special thing they were doing). Right about the time we were getting ready to leave, we got a call that Sophie was vomiting. We took separate cars so I could bring Sophie straight home while Randall joined Elisabeth for lunch. Sophie threw up again when we got into the car and fell asleep almost immediately. She kept napping when we got home and slept for 3 and a half hours (which was a big help, since I was trying to work). She seems to feel fine tonight and ate a pretty good dinner. We shall see! And just to share how great this new church is, we have had multiple people from the church every day asking how Sophie is doing. I think they really care about us!

Posted by Susan at 08:32 PM | Permalink

6:30 AM Central Time: Sophie is doing much better, and we had a really nice weekend. Although she's still itching sometimes, she hasn't had any problems with nausea or vomiting since Thursday afternoon. She went to camp on Friday (it was the last day, so it was good that she could be there). Unfortunately, the end of camp doesn't exactly coincide with the beginning of school, so we're trying to line up care during the day so that we can both work. Randall is going out of town Wednesday and Thursday for a clergy retreat, so I really hope I have something lined up before then!

On Saturday, the towns of Farwell, Texas (where we live) and Texico, New Mexico (just across the state line) had their big annual celebration: Border Town Days. It began with a big parade that started in Texico and ended in Farwell. We parked at the church and set up chairs in the lawn (under a big tree in the shade) at the convalescent home across the street. It was a great view. It lasted about 45 minutes, and it was really fun and interesting. Some of the floats threw out candy and Mardi Gras-type beads. Then at noon, everyone went over to the park to enjoy a BBQ plate dinner and music. The park has lots of trees, so it was easy to find shade. There was a bounce house and rock climbing wall for the kids, and lots of crafts to look at. The 4H kids also had homemade ice cream for sale. By 2:00 (Texas time), we were wiped out and ready for a nap.

Yesterday after church, the girls went home with a couple who had their two grandsons visiting and had a great time. We went out to lunch with a big crowd and enjoyed some time to ourselves. After the girls came home and we ate dinner, we had a grand adventure to a grocery store we don't usually go to in Muleshoe, Texas. Randall and Sophie had been there last week, but Elisabeth and I hadn't been there before. It was something different, and the girls seemed to enjoy the outing.

Posted by Susan at 07:24 AM | Permalink | Comments (1)

7:00 AM Central Time: So, we've had a good run, with Sophie sleeping through the night pretty much all week. Until last night. 1:30 in the morning, and Sophie is standing next to the bed on Randall's side, blankie in hand, insisting that she can't sleep. Our rule is that she can't sleep with us (too much tossing and turning and then Randall ends up on the couch), so Randall threw out our traditional offerings: (1) We can pull out the crib mattress we keep under our bed and she can sleep next to Daddy on the floor [thanks, Dan and Cindy for that idea from years ago!], (2) We can make a bed for her on the couch, or (3) She can go back to bed. She just kept repeating that she couldn't sleep. She stood there for I don't know how long. I actually fell asleep a couple of times, because she would stand there silently pouting, but then I would wake up when she would loudly exhale or start complaining again. We just kept telling her she had those three choices, and she kept insisting that none would work. We were not going to give in and neither was she. Finally, when we offered the three options again, she said she wanted to sleep next to *me* on the floor. So, that's what she did, and she managed to exert her will in a way that didn't mean we were caving in. I will say that when I woke up this morning at 6:00, Randall was on the couch anyhow (not sure why--he's still there), and what woke me up was the sound of Sophie's teeth grinding. So, we may have found a compromise, but I still don't think Randall and I got a good night's sleep. Oh well, it gives me a chance to get some work done in silence before the flood of e-mails start. SLIGHT UPDATE: Not long after I posted, Sophie came wandering down the hall, wondering where Daddy was. I told her he was on the couch, so she went and got her pillow and they're both sleeping together in there (it's a sectional, so their heads are together and their bodies are making an "L")--it's very sweet!

Posted by Susan at 07:58 AM | Permalink | Comments (4)