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November 01, 2005


8:30 PM: What a day--for all of us. Sophie and I got up fairly early this morning (although not as early as we usually have to) and headed in to Chapel Hill. The anesthesiologists were very late starting today, and Sophie was fifth in line. As always, we weren't certain how she was going to react to going into the treatment room. We started by giving her ativan a half hour before it was her turn. That seemed to affect her a little bit, but when I saw the child before her come out, I told her it was almost time, and she really cried hard ("I don't want a shot!"). Because they didn't want to administer the drug that knocks her totally out while she was out in the hallway without being able to monitor her vital signs (and because bringing her into the room where they could monitor her caused extreme agitation), they gave her a sedative called versed. Then she got really loopy and limp. She seemed fine and calm, so I carried her into the treatment room. As we passed through the doorway, she once again became very agitated and wouldn't let anyone but me touch her. They gave her another dose of versed (after which she was nearly asleep) and then administered the propofol that knocks her totally out.

Last time she had that much sedation, it took her a long time to wake up in the recovery room. This time, she was already awake when they brought her in to me (and she wasn't happy). Unfortunately, these medicines cause amnesia, which is normally good, but what it meant in our case was that she had no idea that she had been in the treatment room and that the procedure was over. She thought the shots were still coming, so she repeated over and over that she didn't want a shot. I kept saying they already did it and there would be no more shots today. She would look at me and slur, "They already did it? No more shots today?" and then moments later complain about the shots again. She also kept asking "Why am I so dizzy?" and started singing Ring Around the Rosie. Eventually she got back to normal. Once they gave her the other chemo (vincristine), we were ready to go. We left at around 12:45 and stopped by my work to say hi to folks there. They hadn't seen her in a while.

Sophie fell asleep on the way home (at about 1:45) and slept soundly all the way home. She fussed a little bit when I moved her to our bed but continued napping until nearly 4:30. I asked Patty from church to come stay with her while I took Elisabeth to dance class. When I got home, I sorted through all the medicine I picked up for her today and gave her the mercaptopurine and dexamethasone (and her normal septra), and I updated the spreadsheet we use to track which medicines we're giving her each week.

The girls enjoyed playing together before bed, and Randall got home not long ago (he's pretty wiped out from the drive and classes all day). I think we'll all sleep well tonight.

November 02, 2005


8:00 PM As elated as I was yesterday to know that Sophie had finally started maintenance, that has all been tempered by the reality that treatment is treatment. There is still a lot of medicine to manage, and it is a little bit overwhelming. Sophie was especially emotional today at times, and it's hard to know if that is just where she's at (she got up at 6 o'clock this morning) or if it's the medicine (steroids) or the flu shot. There is no escaping the concern that there is something wrong that we need to take care of, or at least the possibility that something might be wrong or might go wrong. She looks pale to me, there is a big bruise where she got her spinal tap yesterday, her hair is growing back, but ever so slowly (too slowly?) and to top it all off, a young girl we know from UNC appears to have relapsed (within a couple of months of completing her treatment) and now will probably need a bone marrow transplant, if a donor can be found. Aside from being quick to cry today and taking an exceptionally long nap (four hours!), Sophie has had lots of energy.

Both girls are playing noisily in Sophie's room right now, so it's a little distracting! Elisabeth got her report card from school today and she made all A's. We're very proud of her and hope that she continues to enjoy school as much as she seems to right now. In fact, she's enjoying school so much, a lot of her favorite foods (including sausage) are preferred only if they're at school--does anyone else know a kid who actually prefers school food?

Susan just reported on her phone call with the doctor at UNC (she had called about one of Sophie's prescriptions). Apparently, many of the kids are quite tired the first couple of days after the flu shot, so that is one possible explanation for Sophie's whining and crying (and why she slept so much today). We'll be sure to see if she perks up over the next day or two.

November 03, 2005


8:15 PM I'll post a quick update even though I was up in Durham for half the day (unfortunately I woke up this morning with a migraine and spent the better part of the morning in bed). Sophie continues to be cranky and whiny, which we are attributing to either the flu shot or the steroids. She'll finish up the steroids on Sunday, and the flu shot should be wearing off soon. In any event, we're hoping that she'll perk up and return to her happy-go-lucky self quickly!

Sophie just walked up and asked if I was typing about her (and I am!). I said, "Yes, is there something you want me to type about?" And Sophie said, "type I love you." And I really believe that she does--for those of you who know Sophie well, you can agree that she really is that open-hearted. It's amazing to me how outgoing and loving Sophie is. Maybe she somehow got my sister's extrovert/never-met-a-stranger gene!

Speaking of which, today Elisabeth reminded me that the school awards assembly is tomorrow. I told her that it was on my calendar and that I planned to be there. Elisabeth wanted to know if Sophie was going, and I said that I thought she would. Elisabeth then said, "don't embarass me." When I asked what she meant by that, she said that Sophie's bald head was a little embarassing for her. No doubt. You can't miss that fuzzy noggin. I was wondering how Elisabeth felt about Sophie getting all this noticeable attention, and for the most part she seems to not have noticed, but clearly she does. I ended up talking about Sophie's personality and how since Sophie is so outgoing, people will pay attention to her no matter what, but that lots of people love and care for Elisabeth just as much (even if she does have hair). Well, I'm sure that we'll be sorting through all this sibling stuff for many, many years to come.

November 04, 2005


7:20 PM: Sophie is still quite tired much of the time (although she has occasional bursts of energy). We think it's probably the steroids, given that she's often prone to bouts of irrationality. She napped this morning from 11:00 to 12:30 (we sent Shatesha home early), and then we all went to an awards ceremony at Elisabeth's school. There was only one other child in her class who made the "Principal's List" for making straight A's. That makes us feel extra proud of her--they're not just giving out those A's for free! Sophie was already complaining about wanting to go back to sleep before they got to Elisabeth's class, so we left as soon as her award was announced. I don't think we embarrased Elisabeth. Sophie slept again from about 2:30 to 4:00 (I think--I wasn't really paying attention to the time). We went out for a quick dinner and grocery shopping, and Sophie is already in bed for the night. Poor little kidlet.

Cute Sophie story of the day: When we were in the car tonight, I was telling Randall about a teenager at the clinic who was singing the Ramones song "I want to be sedated" after he woke up from sedation. Sophie chimed in with "Yeah! And he was naked too!" (which, to the best of my recollection, he was not!).

November 05, 2005


9:00 PM Well, we are definitely about four days into steroid treatment with Sophie. She woke up in the middle of the night and needed something to eat. She has been pretty unhappy (and hungry) for much of the day today. For the most part, we know that it's the steroids and we make do as best we can (she ate nearly half of a large bag of popcorn at the movies today). The problem is that the medicine she takes in the evening cannot be taken with any food at all, and she can't eat for some time before or afterwards. We had a rough evening. Unfortunately, between the steroid-induced craving and the steroid-induced irrationality, there isn't much you can do other than to repeat why she cannot eat when she insists for the 10,000th time that she's hungry. Tomorrow morning is the last dose of steroids during this month of treatment (she gets five days of steroids every month, so once a month for the next 18 months, we'll be going through this).

Today has been a mostly pleasant day other than the side-effects. The weather was nice and we were all outside at one point this morning. Susan and I tended to the flower bed beside the house and Sophie was on the swings. Elisabeth was riding her bike and playing "drive through" in the driveway. This afternoon we went to see "Chicken Little" here in town (where Sophie gorged on popcorn). It was a good time out and a decent (but not great) movie. A good time was had by all.

Our "cute Sophie" moment happened on the way home from the movies as we drove past Food Lion. Sophie said, "I want to go there." We said, "to Food Lion?" She said, "Yeah, I want to pick up a couple of things." Just like that. Her language skills are so amazing some times.

Here's hoping we have a restful evening and another pleasant day tomorrow!

November 06, 2005


5:20 PM: It's been a pretty good day. Sophie got up once during the night, but we didn't have to feed her--Randall just laid down with her (she has a double bed), and that seemed to do the trick. Church went well, but it was a bit of a rush to get out of the house. Sophie sat in my lap the whole time. She's just so tired. The girls ate macaroni and cheese when we got home, and then Sophie fell asleep. Unfortunately, we were supposed to go to a potluck at church at 1:00, so I stayed home with Sophie while Randall and Elisabeth went to the lunch. The foods for this round of steroids have definitely been popcorn, macaroni and cheese, or hot dogs (Hebrew National brand--don't even think about giving her the Carolina Reds everyone around here like so much)--and not one bowl of cheese grits the entire time. She did eat a small bowl of apple jacks with milk today, so we had a little variety. This morning was her last dose of steroids, so we're looking forward to a decrease in these side effects. We're a little dismayed by the thought of going through this every four weeks for the next year and a half.

Sophie just told me that we need to brush her hair. I wasn't so sure about that, but I did it, and the fuzz does look ovely now! The other cute Sophie story for today: We had communion at church this morning, and Randall was talking during his sermon about the "bread" at the "table." Sophie said, fairly loudly, "I don't want to eat the bread at the table. I want macaroni and cheese!" Sure enough, when we went up for communion, she wouldn't take any bread.

November 07, 2005


8:10 PM Susan and the girls are probably on their way home from Elisabeth's dance class (Susan took the girls so that I could finish up an assignment that is due tomorrow). I've had a pretty good day at home today with Sophie. She has definitely been less crabby than in the past few days, and although her cravings continue, she doesn't eat as much in one sitting as in the past. She is very, very aware of what is happening this round, though, and she keeps talking about how her tummy is getting bigger and how she "can't wait until her tummy gets really big." She is visibly putting on some weight, but since the steroids are done for this month, she'll slowly lose most of it before too long. I am thankful that she has been less agitated because that is very hard to deal with and it is so contrary to her personality.

Elisabeth had a great day at school and I got to (slightly) embarass her by showing up this morning in her class--she had forgotten her piano books for today's lesson and I figured I'd take the time to drop them off. She seemed happy to see me (for a change--usually she is just mortified that I'm there). This evening the girls and I had a wonderful time at the dinner table and afterwards I had them laughing themselves silly in the bathtub. It was a good day. You may have noticed, too, that we no longer talk about Sophie's dressing changes, mostly because they are such non-events now that we forget to mention them! We had one this evening and it was just fine.

Today's "cute Sophie" report is something that she does quite a bit: when she's watching Scooby Doo, she turns to whomever is sitting with her (Susan, or me, or Shatesha) and says, "if you get scared, you can come sit next to me, okay?" I suspect it's more a matter of Sophie being scared than anyone else, but it's awfully sweet that she's concerned about the rest of us!

November 08, 2005


9:25 PM: Sophie had a great day today. She had all kinds of fun with Shatesha, and they spent a fair amount of time on the home computer (while I was working on my laptop from work). She took her nap fairly late in the day (I think she finally fell asleep around 2:30), and that meant she was still asleep when it was time to pick up Elisabeth. She was pretty crabby when she first woke (aren't we all?), but she perked up before too long. After we picked up Elisabeth, we went to Sonic for dinner, and the girls got to play briefly on the play equipment. I should emphasize the "briefly" part, because when it was time to go, Sophie really pitched a fit. I put her in the car anyhow, and as she cried really loudly, I told her she would have to calm down or we would have to stay in the car instead of going inside the studio during Elisabeth's dance class. She cried a bit longer while Elisabeth and I chatted about things. Eventually Sophie calmed down, but I didn't say anything about it in particular. As we drove up to the studio, Sophie said (with cheer in her voice), "Hey mama! I'm not crabby anymore! Talking made me feel better." How observant!

Once Elisabeth was settled in her class, Sophie began entertaining the crowd, and then she asked to go dance in Elisabeth's class. I told her she couldn't, but then I had an idea. The other class that meets at the same time as Elisabeth's is a "pre-dance" class for 3-4 year-olds. I asked the staff whether it would be okay if she gave it a try. (We didn't enroll Sophie in dance class at first, partly because we weren't sure how she would be doing with treatments, but also because we had originally signed Elisabeth up for two classes on Monday nights, and there wasn't a class for Sophie at the same time). Anyhow, she took to it immediately, and the huge smile on my face made me write a check to register her on the spot! She absolutely loved it. I feel really good about it, and the positive comments from the other parents who were watching her really made me beam.

November 09, 2005


8:30 PM Sophie is flitting about the house, Elisabeth is practicing her piano and we've all had a great evening at home together. It seems like we so infrequently are together at home as a family in the evenings that I have grown to really enjoy the times we are together! Both girls stayed up way too late last night, which meant that we had a slow morning (although Susan left very early, as she usually does). Elisabeth made the bus okay, though, so all was just fine. Sophie stayed with Shatesha while I went to a meeting and got some reading done. Sophie still craves a great deal of food, but she eats less and less and seems to be less obsessive about it (particularly at night when her eating has to be restricted because of the medicine she takes at bedtime).

Sophie's latest trick is that she draws. A lot. She's actually drawing discernible objects now, like faces and arms. She pretty much draws the same thing over and over again, but she is getting very good at it! Sophie has had so much energy lately, we didn't realize how crummy the steroids must have been making her feel. Susan's plan for tomorrow is that as long as Sophie gets down early for a nap, she'll go to Countryside tomorrow to play and visit with her friends. I can't wait to hear how that goes.

November 10, 2005


7:00 PM: Okay, today I'm the crabby one. I'm not quite sure what my problem is. Being pulled in too many directions, I guess. Randall went to class today, and Shatesha was here to watch Sophie. Nurse Amy also came by to update her records. Sophie took a good nap today, and after she woke up, we went to Countryside (her old day care) to meet her new teacher, see the new classroom, and see her friends. She seemed very happy to see Ms. Maria (her old teacher), and she seemed to like Ms. Cindy (her new teacher). Several kids really seemed to take to her right away when they were playing outside. Cameron, in particular, wanted to spend time with her (she wasn't so sure about him though--when Randall asked her the best and worst things about being at daycare, she said the worst thing was when Cameron wanted to site next to her!). Once the kids went inside, Cindy showed Sophie where she would be sitting when she comes back. While most of the kids were sitting on the rug, she wanted to sit at her spot or play by herself. She liked the play phones and made several to her daddy and sister. She was definitely clingy, especially when she was outside, but I think she'll get used to it very quickly.

We'll all be home together tomorrow. Randall doesn't have class on Fridays (but needs to work on his sermon), Elisabeth is out of school for Veteran's Day, and I already drove in two days this week, so I'll telecommute. Shatesha and Elisabeth will meet for the first time tomorrow. Elisabeth is excited about that. It will be nice to have a day at home. I think I'll make lasagne!

November 11, 2005


9:20 PM: We enjoyed our day at home today. Elisabeth met Shatesha for the first time (and probably last, since Sophie will be going back to day care soon). The three of them seemed to have a great time together. Sophie took her regular nap today (I got a short one too--wonderful!). Shortly after dinner (lasagne), Randall took off in the church van to take the teenagers in the church to a retreat. He'll be back late tonight. Elisabeth heard me talking to Randall earlier today about all of us possibly going (but we decided it would be too late for the girls to be out). Apparently, Elisabeth didn't hear the part where we decided we wouldn't all go, because when Randall left, she cried and cried. She was really sad about not going and about her daddy being gone. Sophie was worried about her, so I asked Sophie what we should do to make sister feel better. She made a silly face at me, and I laughed. She said "sometimes a silly face makes me feel better." She said lots of really cute things today that I had thought I would write about, but now I can't remember any of them. I should carry around a notepad or a digital recorder. Anyhow, I finally distracted Elisabeth by putting on a movie. I decided to watch "A Nightmare Before Christmas," which I hadn't seen in a long time. The girls both liked it (although there were just a few scary parts). Then we watched part of "James and the Giant Peach" (Tim Burton wrote Nightmare and produced James, so they had a similar feel), until the girls got tired.

Tomorrow we are going to an Open House at the Chicken Man's place! We are very excited! We're also excited because we'll meet Madi and her family (she's the one who had the benefit a few weeks ago) and then go have lunch.

November 12, 2005


9:45 PM Gosh! Today has certainly been a very full day! Fortunately, we had decent weather for all of it. It has been cold the last couple of days, but today it warmed up a bit. As Susan posted yesterday, our plan was to meet Madison Smith's family at the Chicken Man's Open House, which we did. We spent about 2 hours there. He's got all kinds of rare chickens. I understand that some of them perform tricks, but we didn't see any of that. The girls got to pet one of the chickens, though, which was pretty cool. It was great getting to spend time with Madison and her family. It's interesting to hear how another family dealt with leukemia, and how different Madi's protocol is from Sophie's. For example, Madi was allergic to many of the sedation drugs, so she had her spinal taps with no anesthesia. We sure are glad that Sophie does not react to the sedation! As it is, she wants to steer pretty clear from the "scary place" at the clinic.

After the Open House we went to lunch and to a park here in Dunn. The kids had a terrific time and (not surprisingly) Sophie made friends with another little girl that happened to be at the park at the same time. By the early afternoon, we were all wiped out, so we said goodbye and came home. Sophie and Susan laid down for a nap while Elisabeth did "chores" (voluntarily, I might add) and I finished up preparing for worship tomorrow.

This evening, we went to Clinton to see a girl from church (Caroline) perform in "Charlotte's Web." We had a great time. Elisabeth was already familiar with the story, so she really enjoyed it. For once, she wasn't constantly asking, "What's going to happen next? Why are they doing that? What is he doing?" You get the picture. Sophie was pretty wiggly, but I think she had a good time.

Needless to say, we are all wiped out. Maybe we pushed Sophie a little to hard today--hey, maybe we pushed all of us a little too hard today, but it sure was fun.

November 13, 2005


9:00 PM: Typical Sunday for us. Church, Sunday School, lunch out, grocery shopping, nap, Bible study. So, it was a full and satisfying day. We've been struggling lately with Sophie having a meltdown or really having a bad attitude if we tell her no or to stop doing something. We had to talk with her several times today (and implement a time-out). We'll see whether things are better tomorrow.

Not to be gross, but one thing we really have to stay on top of with Sophie is her bowel movements, because constipation can be a real problem that can lead to hospitalization. We realized this morning that she hadn't gone since Friday morning, so I gave her some Senekot, which really works well with her. Too well, this time, in fact. She went a good amount early afternoon, and a couple more times through the day. Just after we put her to bed tonight, while she was playing with her LeapPad, she called us in because she had pooped (a lot!) in her panties. Luckily, it stayed in her clothes, so we didn't have to change the sheets, but she was really upset. We weren't the least bit mad or upset, so it didn't take her long to calm down. She had another panty-changing incident just now as I was writing, and I hope now she's done for the night. I was going to say it's either feast or famine, but that's a kind of yucky analogy!

Tomorrow nurse Amy comes to check her blood counts. It's been two weeks since she started maintenance, and they want to be sure the dosage of her oral medications isn't too high. If her counts are good, the dosage remains the same, and she is cleared to go to day care. If her counts are low, she'll stay home for another two weeks, and they'll lower the dosage.

November 14, 2005


9:15 PM Today has been a good day. Sophie had lots of energy and was very pleasant to be around. Nurse Amy came today to do a blood draw and that went very well. Sophie was very affectionate with Amy, giving her a hug and telling her that she loves her. It was very touching, especially since we may not have to see Amy again, at least not professionally (we see her out and about in the community and at school on occasion). Sophie's counts came back late this afternoon and they are all really quite good. Her ANC (what we look at to see how her immune system is holding up) is well within the normal range for a person not receiving chemotherapy. The reality of putting Sophie in daycare (while a romantic fantasy at some point in this past year) is becoming a bit of a challenge. After spending so much time with her, and keeping her "safe" at home for so long, sending her off to a group environment seems a bit scary. I know that she will just love all the excitement and stimulation of going back to her friends, but it's going to be hard to not have her at home! This is one of those times where praying for wisdom and courage seem appropriate.

Elisabeth had a good day at school (although she tried very hard to convince me this morning that there was no school today--that was a new one). Last week was a short week, and with Thanksgiving coming up, next week will be short as well, so getting through five days of school will be a challenge for all of us. Almost every day, I ask Elisabeth what the best and worst part of her day at school was. Today, when I asked what the worst part of the day was, she immediately said, "Nothing." Sounds like a good day to me!

November 15, 2005


7:55 PM: I had a good day at home with Sophie today. She's been looking forward to her dance class all day. The girls and I had a nice dinner out before class. Both girls enjoyed their classes and did well. For a lot of the activities in Sophie's class, the little girls stand in a line and each one marches across the room, or sashays, or tumbles, etc. Today, Sophie was the first girl in the line, so she did everything first. She was really excited about that. Elisabeth and Sophie were wearing matching leotards and looked really cute.

Today's cute Sophie story: when it was time for her nap, I laid down in our bed with her, and she had her back turned to me at first. She flipped over and said, "Let me turn over so I can see your beautiful eyes!" Today's not-so-cute story: Elisabeth was trying to practice piano just now, and Sophie was standing next to her, hitting the keys. All I could hear was, "Sophe, stop! Sophie, stop!" I went in there and told Sophie she either needed to sit in the chair and listen to Elisabeth or leave the room. She didn't do either one--just looked at me and said, "Mama, you're going to make me mad!" Randall (who just came home) came in and calmly said, "Sophie this is one of those times when you need to say 'Yes, mama' and do what we say. You choose the chair or leave." She stood there a bit longer and then slowly walked out and began to cry her little eyes out. She just doesn't like it when she doesn't get her way. I don't know if this is typical, or if we let her get away too much while she was on steroids and are now paying the price. We're trying to be calm but firm in these situations, but it certainly is tempting to give in so we can get some peace and quiet!

November 16, 2005


7:45 PM Today was Shatesha's last day, although Sophie was quite nonchalant about the whole thing. For the most part, it was an ordinary day, with one exception--Susan had a little fender-bender on the way to work this morning. Turns out, with the intensity and angle of the sun, she could not see the brakelights on a school bus that had stopped in the road to back up into a side road. When she finally realized what was going on, she hit the brakes and hydroplaned off the road (a fire hydrant next to road was spewing water onto the road), missing the bus, missing a guardrail, missing a fire hydrant, but eventually hitting a stop sign, where, of course, she stopped. She was a little bit shaken up, the car has some minor damage, but given the circumstances, she was not cited by the officer who came to the scene. We'll see what sort of repair bill this will bring about. I'm certainly thankful that nobody was hurt and that the car--our primary commuter vehicle--is safe enough to drive.

I guess no matter what I type after all of that will be anticlimactic, but here goes. After her nap today, I took Sophie to Countryside. She still was pretty stand-offish with the other kids, and they were (for the most part) just wanting so badly to talk to Sophie and love on her. I'm sure everyone will get used to it before too long and things will settle down. Sophie sure did have a good time playing outside and she is looking forward to going again tomorrow (we'll see how she does spending a whole morning there tomorrow). When I asked what the best part about going to Countryside was, she said, "Seeing all my friends!" Well, you could have fooled me. As we were leaving, I got the chance to finally meet Deanna Tew, so that was nice.

Susan and I were commenting on how quiet it's going to be around here if Sophie is back at daycare, if only for half the day (we're going to start her with half days to see how she does). It will certainly be different!

November 17, 2005


9:00 PM: It was wonderful and a little sad to be at home alone this morning. Elisabeth and Randall went to school, and when I dropped Sophie off at Countryside, she jumped right in. I decided not to work for most of today and took the opportunity while I was at home alone to prepare some things for a church event tomorrow. Sophie did great this morning. Cindy said she had a great time and never seemed upset about being there. When I got there to pick her up at noon, the kids were already down for their naps, and Sophie was sitting at the little table looking at books, happy as can be. She chattered away all the way home, telling me all about who she saw and what she ate. Once again, the best part of her day was "seeing all my friends." She took a good nap at home. She says she would like to stay for the whole day tomorrow, so we'll give it a try. I'm glad it's working out well.

I spoke with the insurance adjustor today about my accident. She said I did the right thing by bringing it to their attention, but now that they know about it, it may result in a rate increase. Basically, even though there was nothing I could do to avoid hitting that stop sign (and I was not cited by the officer), the insurance company is classifying it as an "at-fault" accident. So even if we do not file a claim, the incident will be reviewed when our policy is up for renewal, and our rates may go up. If we do choose to pay for the damages ourselves (we've received one estimate of about $850) and don't file a claim, they would probably take that into consideration. I felt that I pretty much had to report the accident to them, because the officer took my insurance information, and if there's damage to the stop sign, the county might make a claim to the insurance company, and then I'd probably be in even more trouble for not having reported it myself. Oh well, we'll see what happens.

If you're in the area, please consider coming to our church's annual Bazaar tomorrow (Friday, 11/18) night. We'll have a plate sale (dinner for $5) and a silent auction. Randall and I were able to get some local businesses to donate gift certificates, and people have already brought some really nice items for us to sell. I'm looking forward to it!

November 18, 2005


10:05 PM: It's been a very long day, so I suspect this will be a very short post. Sophie did great in day care today. She stayed for the whole day, and she said she only cried once because she wanted me. The teacher said she was a little tired in the afternoon but did great.

I spent much of today preparing for the auction this evening. It went very well. I don't have the bottom line yet, but we all had a lot of fun. Thank goodness we only do it once a year though!

November 19, 2005


9:30 PM Today has been another very full day. This morning Sophie and Elisabeth went to a friend's grandparents' house while Susan and I and several church members assembled and distributed Thanksgiving food baskets to some folks in the community. We finished around lunchtime and Elisabeth and I went to Raleigh to see Riverdance (we got her tickets for her birthday). We had a great time. Afterwards, we met Susan and Sophie in Dunn for dinner and a quick trip to Wal-Mart. Elisabeth has been saving up her allowance to buy Madagascar, so we let her buy the DVD and we just got finished watching it a while ago. Needless to say, I for one am quite tired! It's nice to have a packed Saturday, although this makes two-in-a-row for us.

Both girls have been exceptionally cute today. Elisabeth remembered going to Raleigh to see Swan Lake this spring and insisted that since she got a cookie last time, she should get a cookie this time as well. I think I used to have a memory that good, but I'm not sure! Tonight, as the credits for Madagascar were playing, Sophie got up and just danced and shimmied all around the living room. It was a Kodak moment if ever there was one. Susan said it made her wish we had a video camera.

November 21, 2005


6:00 AM: I just realized we never posted an update last night, so I thought I'd write a quick one before I head in to work. It seemed like we spent the whole day at church yesterday (but it was Sunday, so I suppose that's appropriate!). The men served a breakfast at 8:30 (and it was delicious, as usual), then we had our normal worship at 9:30 and Sunday school at 10:45. Randall was back at 1:30 to assemble the last few items for the Thanksgiving boxes and went back again for a meeting at 3:00 (the girls and I stayed home for those two). At 5:00 there was a children's practice for a special hanging of the greens service, and then we stayed for Bible study at 6:00 (the girls mostly entertained themselves while we met). Whew! After a quick dinner at home, Randall and I tried out a few hymns on the handchimes (we're going to try to play something for the special service and Randall had brought them home from the church during the day). The girls enjoyed watching us, and Elisabeth even joined us for a few pieces. She was so excited about it.

Elisabeth is coming down with something and didn't feel good most of the day (runny nose, coughing, sore throat, and an occasional upset stomach). Lots of people seem to be sick, so I wouldn't be surprised if Sophie didn't catch something. But her immune system appears to be in good shape, so I hope she'll be able to fight it off (and I hope she can avoid a fever so we can avoid the hospital!).

11/21/05 PM

7:15 PM Well, today was my first day at home all alone (Susan left for work early, Elisabeth went to school, and Sophie was at Countryside). I was just about to get into the swing of things (I had forgotten how much you can get done when you're not tending to a child full time) when I got a call from Elisabeth's school. She was complaining of a sore throat and since strep had been going around, they did not want to be too cautious. So, mid-morning, I took Elisabeth to urgent care here in Dunn (the same place we took Sophie when we first suspected something was wrong back in January). We spent what felt like the better part of the day there. Poor Elisabeth felt miserable and to top it all off, she had not had lunch yet. We finally ate around 2:30 while we waited for her prescription to get filled--amoxicillin because, yes, she does have strep throat. The doctor was very concerned with us keeping Sophie as protected as possible, so we'll be extra vigilant (although her immune system is probably quite strong right now).

Sophie had a great day at school as near as I can tell. They have been thinking of moving Sophie up to the 3-4 year old room because she is so bright and articulate. Of course we knew that already, but I'm glad she'll get the chance to be around some older kids. She got to try it out for a while today and for our evening report, she said that was the best thing that happened today. The lunch report went something like this: Susan asked, "what did you have for lunch?" and Sophie responded, "Beans, which I did not like, pretzel, which had something yucky in it, applesauce, which I did like, and chicken, which I did like." That's a direct quote (according to Susan). I can remember last fall when we would ask Sophie the same question, we got the same response every day, "hot dogs, french fries, and orangins." She really has grown up a lot in these last ten months (today is ten months to the day that she was diagnosed).

November 22, 2005


7:30 PM: Elisabeth seems to be feeling better today, although she had to stay home from school while we wait for the antibiotics to take effect. This morning, unfortunately, Sophie said her throat hurt too. I called UNC, and they said to have her tested, so I took her to urgent care this morning. We were the second person there, so we didn't have to wait as long as Randall and Elisabeth did yesterday, but it still took over an hour. The doctor was really pleased to see her again. She was quite unhappy about having a swab put in her mouth, but he eventually got a sample, which turned out to be negative for strep (plus her throat showed no signs of irritation).

After we were done, she decided she didn't want to go to Countryside, but I insisted (we thought it was important for her to reduce her exposure to Elisabeth). She cried her little eyes out when we got there, but I took her to her "new" classroom and hung out for a little while. Before long, she seemed pretty comfortable, so I left (and her teachers said she had a wonderful day--she spent the whole day in the upper 3-4 classroom). She reported that the best thing for today at school was "cooking" in the pretend kitchen. She was putting all the food and pans away when I got there.

After all that, it was hard to get back into the mood to work once I got home, but eventually I got motivated. One nice piece of news is that a manuscript I submitted to a journal a few months ago (with the help of a co-author) was provisionally accepted (I have to make a few revisions to be reviewed by the editor). The editor said it was one of the best written submissions they've ever had, which was wonderful to hear! This will be my first peer-reviewed article, and it's looking like two more manuscripts I worked on will also be accepted this month (although I wasn't the lead on those). The three articles will be a nice resume booster.

Elisabeth went to class with Randall this afternoon (two of his classes were cancelled, and she went with him to the one class that wasn't cancelled). He called a little while ago and said she did great. I picked Sophie up from Countryside, and the two of us went to dinner before her dance class. There was an elderly gentleman eating by himself at the Cracker Barrel who came over to our table and complimented Sophie on how well she "handles herself." He was amazed at how young she is, given the way she talks and interacts with her surroundings, and asked if I knew how special she is. That's nice to hear. She is a special girl. I think a lot of it has to do with being around (and copying) Elisabeth, who is also very special.

Today when Sophie and I were in the car, she saw a huge buzzard in the road, and it flew off as we went by. She said, "I wish I could fly." I had noticed the bird, so I asked her about it and whether she wanted to fly in an airplane. She said she did. I asked her where she wanted to fly in an airplane. She said (without even really pausing), "New York." I asked her what she wanted to do in New York, and she said, "Play. They have lots of toys in New York." I'm not sure where that all came from (possibly Madagascar, which we watched recently and begins in New York), but I certainly did think it was interesting. Randall and I had just recently been talking about looking into the Make-a-Wish foundation and how we thought she might need some guidance on selecting a wish. I thought the best she could do is wish for a bowl of cheese grits, but I had no idea New York would enter her mind. We were leaning more toward Disney World, so we'll see what happens!

November 23, 2005


6:15 PM I'll post a quick entry before our evening activities begin. Elisabeth and Sophie went to Countryside together today (Elisabeth was so excited). Susan and I both worked at home today, getting all sorts of things done (I think Susan had a more productive day than I did, but there you go). Tonight, we'll be setting up the tree and otherwise getting the holiday decorations prepared at church. Afterwards, we're going to pile into the car and head up to Mary and Nannie's for Thanksgiving. I read in the paper this morning that traffic is going to be especially bad (which I had never even considered--you mean other people travel on Thanksgiving, too?), and the paper suggested that folks either travel later this evening or early in the morning. I would rather not do mornings, so we'll head out around 8:00 or 8:30 tonight and roll in around midnight or 1:00 am. It'll be nice to wake up there on Thanksgiving morning rather than have to fight traffic to get there. This way, we'll be able to help with all the preparations as well. As it is, we'll all be swapping germs anyway. Both girls have a cough/runny nose, Elisabeth and I are on antibiotics, Mary has a nasty cold, and Nannie has not been feeling well. Surprisingly enough, Susan is probably the healthiest of the bunch! We'll return Saturday afternoon/early evening so that I can be back for worship on Sunday morning.

November 25, 2005


8:15 PM Happy Thanksgiving! We celebrated Thanksgiving today (a day late, but just as tasty). Since we traveled late Wednesday, we though we'd take it easy on Thursday and do all the cooking and preparing on Friday. Actually, I'd highly recommend it. It makes for a pleasant day on Thursday and if you're not into all the shopping and hoopla on Friday, you've got time to do it then! The girls are happy to be here at Nannie and Grammy's, and I think they are excited to have us, although both Nannie and Grammy are under the weather. Both of them visited the doctor today and both came back with a prescription for antiobiotics. Susan is the only person in the house not currently taking an antibiotic (Sophie takes one on Mondays through Wednesdays, so I suppose that should count). It's been a mostly relaxing visit, although Nannie has been pretty much confined to her bed for most of the time. Mary (Grammy) has tried valiantly to take care of lots of things, but she's pretty much run herself ragged at this point.

Both girls have been especially good on this trip. Elisabeth really has matured a lot this fall, she's such a pleasant child to be around. I think she likes that Grammy asks her to help cook and do "grown up" things. In fact, Elisabeth pretty much made the pumpkin pie all by herself yesterday. Sophie's been doing great, although she seems to be getting some sort of rash on her chest. It looks similar to the allergic reaction she had to the Tegaderm several months ago, so we're keeping an eye on it. She'll go to the clinic this coming week for a spinal tap, so we'll be sure to point it out. Of course, it'll probably be gone by then so we'll just have to describe it.

We have a great deal to be thankful for this year--for health, for friends and family. Of course, we could be thankful for these things every year, but we have been extra blessed this year and so we are extra thankful.

November 26, 2005


9:00 PM: We're home! We had a leisurely morning at my mom's and took off just after lunch. I think everyone was a bit sad that we were leaving. Mom and Nannie are still both pretty sick. We took the bypass around Lynchburg and missed all the shopping traffic. The girls fell asleep about an hour and a half before we got home, so they both got a good nap. We arrived at home in just enough time to unload the car before heading back out to the pig pickin'. The girls didn't even get out of the car. We had a great time at the meal. Lots of friends were there, and the food was amazing.

November 27, 2005


11:00 PM: I can't believe it's time to go back to work tomorrow. Having all these days off has been really nice. Today was a good day. As usual we spent nearly the whole day at church--ti's just that time of year. In addition to the regular worship service this morning, we had our Hanging of the Greens service, which Randall organized. Randall and the kids did everything, and they did a fantastic job. We also had a soup and chili dinner, which was wonderful. It was the perfect dinner for such a wet, rainy night.

Sophie was her usual cheerful self today, although she did seem a little more tired than normal. In just two days, it will be time for her monthly clinic visit (and five days of steroids). It doesn't seem like it's already been 4 weeks since we were there.

While we were at mom's for Thanksgiving, I discovered a number puzzle called "Wasabi", which is a variant of a game called "Sudoku." I'm totally addicted to it, and when I was doing one of the puzzles I found on the internet, Elisabeth sat down with me and played 2 games, and now she loves it too. I don't know whether she can do it all by herself yet, but I found some easy ones for her to do, and I am really enjoying playing together with her. She picked it up really quickly, and we're having a lot of fun.

November 28, 2005


8:30 PM I'm going to take a brief moment and post an update for today before Susan brings the girls home from dance class and our nighttime rituals begin. As I type this, I can hear Sophie's voice down the hall, so I may have to interrupt this. . .

We've all had a good day today, although drop off at Countryside was a little difficult. Susan left early for work (although not as early as some days), and I had no trouble getting the girls dressed and ready to go. Elisabeth and I waited for the bus while Sophie hung out watching TV on the couch. When it was time to go to daycare, Sophie was pretty happy to get dressed and get in the car. When we got to Countryside, she was fine until we walked into the room. Sophie got real quiet and just sat down in a chair and watched me while I put away her coat and blanket. She never took her eyes off me, even though the teachers were trying very hard to engage Sophie--they even offered her french toast sticks! I talked to Sophie a little while, but tears kept welling up in her eyes and she would not talk back to me, she only nodded or shook her head. Finally, I just walked out and Sophie started crying before I got to the door. It was very, very hard, but I realize that she has been with us for the last several days and Countryside is still "new" to her. She had a wonderful day and even said that she had something yummy for lunch but couldn't remember what it was (how's that for trying new food?).

Well, after a few interruptions (and both girls are still awake), I guess there's not too much to add. Tomorrow Sophie and Susan leave early in the morning for a clinic visit (vincristine and spinal tap, with sedation). Sophie was very concerned about "getting a shot" tomorrow, and Susan tried very hard to assure Sophie that although she would be getting a "shot" in her back, it would not hurt because they would give her medicine in her tail first that would make it so she wouldn't feel anything. I don't know if Sophie understood, but we kept insisting that we would always be truthful with Sophie about her treatments and that we would never tell her something wouldn't hurt if we knew that it would hurt.

Speaking of treatment, Sophie starts another five days of steroids tomorrow. We're not looking forward to that, in case you were wondering. Another week of manic food cravings and irrational temper tantrums. Maybe after 18 months with a five-day regimen of steroids we'll figure out how to deal with it, or maybe we won't and after 18 months we'll just be thankful to be finished!

November 29, 2005


3:20 PM: Sophie and I had a good day at the clinic today. We left very early (5:50 AM) and arrived at 7:20 only to discover that we were 8th in line. Next time, I'll try to leave closer to 5:30 when we have a spinal tap scheduled. Anyhow, we had a good time once we got settled. Sophie's "Carolina Pal" Adriane came and played with her on the computer while I played my Sudoku number puzzles I had brought along and talked with the other parents. Once again, one of the parents I talked to had just gotten news that her daughter has relapsed. Libby (who is about 5, I think) was undergoing treatment for ALL (the same thing Sophie has) and had been in maintenance therapy for about 8 months (we're in month 2) when they found abnormal cells in her spinal fluid after a spinal tap. So now she has to start all over again with an even more intensive protocol that includes radiation (but she doesn't have to have a bone marrow transplant). The good news is that the prognosis is still quite good--75%--since she relapsed so long after treatment started. I know this family must be going through so many emotions right now. These stories are scary to hear, and it's hard to know what to say that will be comforting and not trite or superficial. I guess the best thing to do is just listen.

When it was Sophie's turn to go into the sedation room (just before 10:00), the anesthesiologist came over to the play room and gave her an injection of versed to calm her down. That worked pretty quickly, and she had that loopy expression on her face and was pretty relaxed. As we walked through the doorway of the sedation room, I tried to keep her face buried against me, which worked pretty well. She whimpered a little bit, but they injected the propofol quickly. Just before she lost consciousness, she looked at the nurse and said in a sluggish voice full of wonder, "You have two eyes!" Dr. Gold said she did well, and she was already waking up and fussing as they brought her into the recovery room. She asked several times why she felt so dizzy, but she cheered up pretty quickly (the bowl of cheese grits I fed her helped a lot). Not long after that, they injected vincristine and her steroid (so we won't have to give it to her crushed up in yogurt today at least). Her counts looked good. Things are on the low side, but everything looks exactly as they would expect given what she's taking. Her ANC was 1.1, and although that's a little bit low, they said we shouldn't worry about taking her out of day care at that point.

Randall had left his parking permit for Duke in the car we were driving and ended up missing his morning class, so he met us for lunch (which was a wonderful surprise) and picked up the permit. We all enjoyed our pasta, and Sophie watched a DVD on the way home (which was great, because that meant she took a nice long nap when we got home). The girls and I are on our own tonight, and we'll have dinner together before heading off to dance class.

November 30, 2005


9:00 PM: I was up early for work this morning, and just as I got out of the shower, Sophie wandered in and said she wanted to watch TV. I suggested that she go back to bed and wait until I got dressed. Just as I suspected, she went back to sleep, so I didn't have to worry about entertaining her and getting ready at the same time. Randall took both girls to school (and day care) this morning, and drop off was a little better than it had been on Monday. No tears this time, although she did insist that she wanted her Barbie blanket instead of her Care Bears blanket. Randall snuck in later in the morning and dropped off the Barbie blanket without being seen by her. He wondered how she would react when she saw that he had brought the blanket without saying hi, but he didn't hear anything about it when he picked her up. It sounds like she had a good day, although she insists the only thing she ate for lunch was crackers. Her appetite doesn't seem to be increasing yet, but I'm sure we'll notice it tomorrow. She does seem a little more tired than normal (the steroids really wipe her out in addition to making her crabby and hungry). We are hoping being in day care won't be too tiring for her, since they only take one nap during the day.

Elisabeth gave me a preview of the songs she and her schoolmates will be singing for the school Christmas program. I'm glad she did, because I discovered tonight that I'll be traveling at the time of the program and won't get to see it (I'm flying up to DC for a 1-day meeting on Wednesday next week and will come home late Thursday night). I can't believe November is already gone and December starts tomorrow. Time is just flying!