Sophie's World

8:45 PM: Happy New Year! The girls went back to school and day care today, and it's a holiday for my company but I worked anyhow (having taken a week and half off, I have lots of catching up to do). Randall got ready to go on his trip tomorrow (he comes home on Saturday). I think it will be good for him to get away--he doesn't get to travel on his own as much as he used to. Sophie is a little crabbier than normal because of the steroids, but it isn't too bad, and we can usually curtail any hysterics by distracting her away from whatever she wants but can't have. Tonight while Randall took Elisabeth to dance class, I gave Sophie a bath and then we changed her dressing on our own. She cried all the way through it, but we managed without help. Randall and I are both coming down with colds (sinus congestion for Randall, cough and congestion for me). It's been a while since I have been sick, so I can't complain too much. Randall can complain though--my coughing kept him up last night, and he ended up sleeping on the sofa. When I quieted down, he tried to come back to bed only to find that Sophie had taken his place, so he slept in her bed.

Posted by Susan at 08:49 PM | Permalink

10:20 PM: It's been an exciting day in our household. Let me start by saying that I slept pretty well until around 4:00 AM and then started coughing and couldn't really sleep well for the next two hours or so. I finally got the coughing under control and fell asleep around 6:00 when Sophie woke up and wanted me. Oh well. Randall got up shortly after that and prepared to leave for his trip (he arrived in Nashville safe and sound, and he's spending tonight with his mom in Clarksville). I got the girls ready for school and daycare, and we went out to wait for the bus in our car at the end of the driveway. Elisabeth wanted to get a stuffed kitty she had planned on taking to school, so I told her to run into the house to get it. It looked like her scarf had gotten stuck in the door when she slammed it, but she ran to the house and got the toy. When she came back, she was crying because it turned out to be her finger (pointer finger on the right side) that got slammed in the door. It was already really swollen and looked awful. The skin was broken and everything. We dropped Sophie off at daycare, and then we went to Elisabeth's school, where I asked the nurse to take a look at it. She thought we should take her to Urgent Care. I knew the one in Dunn wasn't open until 9:00, and I wasn't sure they had an x-ray machine, so the nurse suggested I take her to Clinton (which is about 20 minutes away to the south). We actually came home and had a quick breakfast first and then drove down to Clinton. The doctor didn't see any indication of breaks (but will send the films over to the radiologist at the hospital). They taped Elisabeth's finger on a splint (with bright blue tape!) so she would be more comfortable, and I took her back to school (ater a quick trip to Bojangles). I think Elisabeth is actually enjoying the extra attention. I accused her of trying to break all ten of her fingers before she graduates from elementary school (she didn't think that was very funny).

Sophie did well at school today. I took the girls to dance class tonight, and Sophie decided she didn't want to dance. The last time that happened, Randall brought her home and I went back later to pick up Elisabeth. Since that wasn't an option (and because someone was expecting me to call during dance class), I told Sophie she didn't have to dance but I did want her to sit to the side in the classroom and watch. She said she would do that and told everyone we saw that she wasn't going to dance--she was just going to watch. As I suspected, she watched for just a minute or two and then joined in the fun. It's been about 3 weeks since the last class, and everyone commented on how much her hair has grown.

I am T I R E D! I had hoped to take a nap this afternoon, but since I missed the whole morning dealing with Elisabeth's medical emergency, I felt like I needed to work the rest of the day. I am looking forward to going to bed soon, and I really hope I can avoid any coughing attacks during the night.

Posted by Susan at 10:22 PM | Permalink | Comments (1)

10:30 PM: We've had a much better day today. No injuries, and I slept through the night! We did miss the bus this morning, but we'll try to do better tomorrow. I got a full day of work in today (and did 3 loads of laundry and made a casserole for dinner!)... I can bring home the bacon and fry it up in a pan, as the old song goes. Anyhow, we had a good evening together, although we miss Randall. Elisabeth sat in his chair for dinner. Sophie did the coolest thing tonight. When it was time for her to take her oral methotrexate (3 little pills that she usually chews up), she started complaining about it not tasting good, so I asked her if she wanted to try something. I went and got one of my own pills and showed her how I put it on the back of my tongue and then swallow it with water. She popped one of the pills in her mouth and swallowed it right down, no problem. She was very excited to do it with the other two pills and can't wait to try it with some of her other medicines. I don't know how well it will work with her steroid, because it will leave a bitter taste on her tongue but I warned her and she wants to try it (we'll report on that in a few weeks). At the hospital, I asked about the possibility of teaching her to swallow pills a year ago, and the nurses cautioned me against it, saying that if we try to get her to do it too early, she could have trouble swallowing pills for years. I'm so pleased it worked out so well, and I'm really proud fo her for trying it so willingly. Elisabeth (who wants to wear her splint for a few more days--in order to get a little more attention, I think) now wants to try it too. I told her I would buy some "junior" advil that's not chewable and she can try it next time she has a pain.

Posted by Susan at 10:25 PM | Permalink | Comments (1)

10:20 PM: Last night was tough. I didn't take the cough syrup with codeine because it's getting low, and I coughed until 1:30 in the morning! We missed the bus yet again (tomorrow is another day). I managed to get both girls to school and daycare eventually. Around mid-morning, I got a call from one of Elisabeth's teachers that her finger was hurting (she's still wearing the splint), so I took her some ibuprofin. This afternoon, I took two of our kitties (Achilles and Turtle) to the vet. Turtle meowed nonstop all the way there, while Achilles was completely silent. They got their vaccinations, and the vet recommended they both get their teeth cleaned. Since they're both elderly (age 12 and 15), they went ahead and did a blood draw (so now all three cats have a shaved neck). Everthing looks good, although Achilles has low platelets so we have to recheck him in a few weeks.

When I picked up Elisabeth today, we talked about our plans for the evening (the girls were going to watch a movie while some of us church women had a meeting). I said the I assumed there would be a DVD player, and Elisabeth asked me what "assume" means. I had trouble coming up with an explanation and finally decided on "when you have to make a decision and you don't have all the information you need, you might make a guess about how something is going to be." She wanted to know what happened if you were wrong. I told her you just have to do the best you can with what you know. I love it when kids ask interesting questions!

I bought ibuprofin tablets today, so when we got home after the meeting, Elisabeth tried taking a pill the same way Sophie did last night. Not quite as successful, but she did get it down. Quite a bit of residue was on her tongue, so apparently, the pill took a detour before being swallowed. Sophie swallowed her mercaptopurine (a half tablet) with no trouble.

Randall is having a good time at his conference. He met up with a good friend for dinner, and I'm looking forward to hearing all about it. I see from recent comments that we have a new visitor (Hi Patty!) due to our Christmas letter, so for all you new and returning visitors, thank you so much for your kind words, thoughts, and prayers! It's always good to hear from you.

Posted by Susan at 10:18 PM | Permalink

9:20 PM: TGIF! I slept well last night, and we didn't miss the bus (one out of four ain't bad?). Sophie slept late this morning--until 8:30. After I dropped her off, I went straight to urgent care (my regular physician is in Durham), and he said I have sinusitis. He prescribed a nasal steroid that I haven't tried before, gave me some strong decongestant samples, and prescribed zithromax and a cough syrup with codeine. I hope that all starts to make a difference soon. The girls and I went into town after I picked them up and ran a few errands and then went out to dinner. Sophie was behaving so badly, I nearly gave up and went home a few times. She was crying a lot over the littlest things, and once she got going, it was hard to keep her from escalating. As usual, funny distractions tended to work, and Elisabeth is very good at making her sister laugh. It also helped a lot when Sophie saw her friend Sara Katherine from daycare. We're looking forward to having Randall home. He will spend the night with his mom tonight and then come home mid-afternoon tomorrow.

Posted by Susan at 09:19 PM | Permalink

10:05 PM Today has been an exhausting day for all of us, I think. Susan reached her limit of being a single parent, and I don't doubt it! I flew back home mid-afternoon and was very nearly exhausted by the time I got home. I met Susan and the girls for dinner in town and drove back with both girls while Susan enjoyed some time to herself. She ended up going to bed while I got the girls bathed and let them play so that I could get ready for worship in the morning. I had a good trip and as always, it is good to be home, but, as always, there is always so much to come home to. It does not help that the head cold I've been nursing all week seems to have settled into my throat. Every now and then I get a case of laryngitis after a cold and I fear this may be where I'm heading. I hope it'll hold off until after tomorrow.

It's been great seeing the girls again--Sophie's hair has really grown and I don't know if it's just me, but the girls seem to be having an especially good time with each other. I wish I could record the two of them laughing together and post it on the blog sometime. I wonder if there is anything more satisfying or heart warming than to hear your children laugh.

Spending time with folks (friends and friends of the family) that I haven't seen in a long time meant a lot of re-telling our story with Sophie and her treatment and diagnosis. I forget sometimes how touch-and-go this past year has been and how dreadful the cancer and the treatment are. We, or at least I, almost take our situation for granted some times, not realizing that ours is an unusual life.

Posted by Randall at 10:04 PM | Permalink

7:00 PM: We had a full day yesterday (thus the lack of an entry for 1/8). The church service went well, with only one hitch. Our pianist was out, and Randall and I had been thinking about buying the hymnal on CD for the church, so Randall did that while he was on his trip. He got everything prepared to play it over the sound system, and everyone stood up for the first hymn, and... nothing happened. Apparently the CD was playing, but nothing was coming over the speakers. We'll have it looked at and hope we get it figured before the next time our pianist is out of town. We had several new people visiting during the worship service and Sunday School, which was nice. Randall did another one of his narrative-syle sermons. I like those.

We had a sitter come over last night and went out for our date night. When we got home, both girls were sleeping together on Elisabeth's floor. During the night, Sophie cried, and I moved her to Elisabeth's bottom bunk. When I got Elisabeth up this morning, she had moved to the top bunk. The girls did well in school today, but they were both kind of grumpy when Randall picked them up today. After a quick bath, we changed Sophie's dressing (she cried as usual but got over it quickly as usual). We had dinner together, and Sophie and I are home waiting for Randall and Elisabeth to return from dance class. We got the ornaments packed away last night, and I just now took the lights off the tree. That sure was a lot easier than getting them off!

We're all doing okay. Sophie is feeling well. We thought she was getting an ear infection, but she hasn't complained about her ear hurting in a couple of days now. Elisabeth's finger is still sensitive but doing much better. Randall's throat has been hurting, and I'm still coughing, although it seemed better today. Maybe I'll try just one teaspoon of cough syrup with codeine and see how I do tonight.

Posted by Susan at 07:09 PM | Permalink

10:00 PM There really is not much to post. Today we found out that the pharmacy that has been supplying us with most of Sophie's IV maintenance has been changed to another provider, which is not terrible news because we had not been very happy with them. I spoke to a representative from the new pharmacy today and I'm cautiously optimistic that things will go better with them. Honestly, at this point in the process, it cannot be that hard to do a halfway decent job since all that we're expecting of them is to keep us stocked with all of the necessary equipment.

Then again, we're still running around in circles with our insurance and Betsy Johnson (the local ER). It's a very frustrating situation, and I cannot imagine how others deal with these sorts of problems. Susan and I are both determined enough and logic-minded enough to sort through these things, but honestly we're at the end of our rope sometimes.

Sophie is doing great. We'll get a blood count tomorrow to see if the reduced levels of her drugs are keeping her immune system and blood counts at a safe level. She's a total handful (as always), although she does have a nasty cough--can't imagine where she got that from! It seems as if Susan and I are feeling better from our colds, so it's probably time for one of the girls to get sick. Both girls are sleeping in Elisabeth's room again tonight. It seems as if they really have developed a more playful bond in the last month. Of course, they still argue and bicker over the littlest thing, but it's not unusual to hear them giggling and carrying on together.

Posted by Randall at 10:00 PM | Permalink | Comments (1)

10:00 PM Well, the cold and congestion is now working its way through our family. Susan is still fighting off her cough and I still feel a little congested every now and then. Although Sophie's counts are quite strong, she has had a runny nose these past couple of days and I spent the better part of the night last night up with her and her coughing. She was slightly warm this morning when I took her to daycare, so I let the teachers know that they should keep a close eye on her. Just before lunch, they said that Sophie was running a slight fever and seemed to be very tired. I picked her up, checked her temperature (99.5) and got her to take a nap. Today was my first day of classes for the spring semester, and Susan was wrapping up a two-day meeting for work. Susan left her meeting early (after lunch) to be home with Sophie so I could go to class. Always an adventure around our house, particularly with our 70+ mile commute (one way). The good news is that Sophie's fever never did spike any higher and she has seemed to be in good spirits (but coughing and still tired and cranky) all evening.

This is an older Sophie story, but it was one that we have been meaning to post for some time. A while back, I was straightening up the pillows on our bed when I noticed that one of our pillowcases has a lot of small pin-prick-sized holes running up one whole side. At first I suspected the cats, but the pattern wasn't quite right, so I began to suspect that a child was involved. I asked Elisabeth first if she knew anything about the holes, and she said that she didn't. I then pointed them out to Sophie and suggested that they looked like someone took a pencil or a pen and poked holes in the pillowcase. She just shook her head. Then I asked, "well, how do you think these holes got in the pillowcase?" "If someone took a feather (one of my pillows is a feather pillow) and turned it around so that the pointy end is like that (holding it in her hand for demonstration purposes), somebody could do that (stabbing at the air with her imaginary feather)." "Oh," I said, "would that somebody happen to be you?" She nodded her head. I'm beginning to wonder if she's been watching too much Captain Feathersword on the Wiggles!

We have an update on the new pharmacy situation. My earlier optimism was short-lived and unfortunately misplaced. We received our first shipment today and ended up with a fair amount of stuff that I'm sure I told the representative on the phone that we did not need (and some things--like syringe needles--that we never discussed and we have absolutely no use of), and did not get one of the things that we absolutely are going to be in need of soon. So, I'll be on the phone with the new pharmacy tomorrow trying to get this straightened out. Thankfully, we have a choice, so if we're unhappy with these folks, we'll pull the plug and move on to the next in line.

Posted by Randall at 10:07 PM | Permalink

9:15 PM There has not been too much to post, our lives have been moving along in pretty typical fashion. Susan, Sophie, and I continue to have some lingering head cold issues, but we all seem to be getting better. Sophie has been quite a crab today, and we're not sure if it's health-related (maybe she's coming down with something) or if it's just typical three-year old stuff. Lately she is just really digging in her heels when she has to do something that she does not want to do (go to bed, take her medicine, take a bath, etc.). Pretty much anything we ask her to do, she pitches a huge fit (complete with stomping her feet and everything). So, we're working on that. This morning the biggest fit (one of many today) was over going to school. Sophie just did not want to go. Well, as she got increasingly hysterical over the process of getting ready, we just let her stay in her room and vent for a while. We were not going to let her stay home, and we really did not want to be in the same room with her screaming, so we let her be alone for a while. After a while, she more or less willingly went to school, although she was still pretty upset.

Tonight, the dressing change was quite an ordeal. In fact, gone are the days when she cheerfully takes off the dressing by herself. Nowadays, there is much wailing and gnashing of teeth every Monday night as we have to change Sophie's dressing. She is getting less compliant about taking her medicine as well, complaining about how it tastes and insisting that she does not want to take it. Well, you can imagine how far that goes, no matter how much she protests! I guess as I type this that it is all probably a normal, age-appropriate stage that any healthy three-and-a-half year old would go through, but it sure isn't any fun for any of us.

On another subject, I think we've got the pharmacy all straightened out. I'm still witholding my evaluation of this new pharmacy, but we got last week's issues fixed pretty quickly.

Sophie goes to the clinic next Tuesday for a spinal tap and some chemotherapy. Given how difficult she's been lately, I can only imagine the screaming that will ensue next Tuesday as she goes into the sedation room. If you hear anything next Tuesday morning about 9:00am Eastern time, it might be Sophie at the clinic!

Posted by Randall at 09:08 PM | Permalink | Comments (4)

8:00 PM: We're really flattered to learn that there are actually people out there who have some interest in reading about us on a daily basis! We'll make an effort to keep our updates regular, but you know how life can be! Either we're really busy or there's nothing to report but the most mundane details of our lives, but I suppose reading about our daily activities is better than wondering if we're not posting because something bad is going on.

Sophie had another rough morning at daycare. She slept in this morning (and ended up in bed with us last night), and she seemed fine until it was time to go. When we got there, she clung tenaciously to my leg again. Her teacher reported that she stopped crying soon after I left, but that doesn't make it any easier to listen to her scream as I linger outside the door.

Today, we met with a local attorney to discuss estate planning. It was a relief to have a plan for documents we need to have and decisions we need to make. It's also nice to be making progress on our New Year's resolution from *last year*. (This year's resolution is to establish some order out of the chaos of our stuff that's in the building out back).

We had another battle over where we would eat dinner tonight. Randall and I each picked up a girl (because he had to come home after dinner to work while I took the girls to dance class), and we had decided on a particular restaurant (a local buffet--Ernie's). I had Sophie, who was fine with our choice, and we got there first and waited inside for Randall and Elisabeth. Not long after we arrived, I got a call from Randall, who said that Elisabeth wanted to go somewhere else (a different buffet--Pizza Hut). As I listened to Elisabeth cry, I convinced Sophie to go to Pizza Hut. When I saw that Elisabeth's first trip to the buffet consisted of a plateful of ranch dressing, a packet of crackers, and exactly one slice of cucumber (which, I might add, she could have gotten at ANY buffet!), I let her know how unhappy I was with her insistence that we change our plans. She eventually ate some pizza too (but not much), and Sophie ended up discovering raisins. After I told her some of the health benefits of raisins (while Randall and Elisabeth were refilling their plates), she went on to announce quite loudly that "raisins will make me poop!" when they returned to the table.

Sophie refused to join her dance class for the first 10 minutes or so, but I made her sit in the classroom and watch (usually she just joins in after a while, but tonight she was more stubborn). At some point, she started running back and forth along the wall, and the other little girls were clearly thinking of joining her, so I opened the door and told her she had to sit still or join the class. Her first suggestion was that she would walk instead of running, but I insisted on sitting still or joining the class. She joined the class and had a great time. There was a new little girl (Madi) who joined the class last week, and her mom told me tonight that Madi talked all week about going to dance class with "Sopie" and wanted to know why she didn't have any hair. I guess she made quite an impression!

Posted by Susan at 07:56 PM | Permalink | Comments (1)

9:00 AM: We never got around to posting an update last night, so I thought I would do one today. Yesterday's drop-off at Countryside was again filled with clinging and tears, but Sophie was as happy as a clam when we picked her up in the afternoon. This morning, I tried to be very proactive about it, and as we loaded up in the car, I asked "Are you going to cry when we get there or laugh when we get there?" She said she was going to cry. I asked her if she would laugh if I held her upside down when we got there. She thought that was great and said she would laugh. When we arrived, she eagerly jumped out of the car and held up her arms. I hoisted her over my shoulder with her head down, and we went into the classroom. Then I plopped her down, hung up her jacket and walked right out! Go figure.

Two funny stories:
The four of us were having a snack at the Grocery Barn down the road recently, and one of the ladies who works there came out to talk with us. She and Sophie seemed very fond of each other, and at some point, Sophie went over to Randall and whispered loudly in his ear: "Why does she have cobwebs in her hair?" We laughed and laughed, because she had been working in the kitchen and was wearing a light-colored hairnet. I hope that doesn't say anything about the frequency of our housecleaning that Sophie so easily recognized a cobweb!

Yesterday, Elisabeth informed us that she and her "band" (a few girls at school and church who like to pretend they are in a band together) will be touring in Hawaii this summer, and since she's telling us so far ahead of time, we shouldn't have any trouble arranging the trip. I'm glad they have a great imagination, but unfortunately, it doesn't match our budget!

Posted by Susan at 09:09 AM | Permalink | Comments (2)

8:30 PM: Tomorrow will mark the one-year anniversary of Sophie's diagnosis. It's hard to believe we've been doing this for a year (and still have over a year to go). The memories of what that day was like and how we felt are still quite fresh, but at the same time it's hard to remember what life was like before treatment started. We are forever changed by this--in good ways and bad. We have made new friends we never woud have met, and we have re-established relationships with folks from our past. It's been horrible and wonderful and monumental and no big deal all at the same time. Thank you for being with us along the way.

Posted by Susan at 08:31 PM | Permalink

10:00 PM Today started like a regular day. Susan had a women's breakfast at church and I stayed home and watched the girls and worked (some) on my commissioning papers. We went to town for lunch and to get some prescriptions refilled for Sophie. After that, we came home and made a couple of lemon buttermilk pies using Susan's grandmother's recipe--yum!

The reason why we made the pie was so that we could take them to our friend Madi's house (Madi had leukemia like Sophie). We had a great time there. The girls played and played and we visited with Howard and Allison and even got to play dominoes. I don't think we've played any games since we moved to this area, so we had a great time. Unfortunately, as we were packing up to leave, Allison said that Sophie felt warm. We checked her temperature and it was 102. So, we got UNC on the phone and started making arrangements to get Sophie and Susan up to UNC. Happy anniversary. Just when you think you've reached a milestone and can assume that everything is behind you, life takes a curve. Susan and Sophie are on their way to UNC right now and will easily spend much of the night there. They will draw some blood and take cultures to make sure that there is no serious infection going on and to check Sophie's ANC levels (indicators of her immune system's strength). They will likely give her some IV antibiotics as well. If everything looks okay, they'll probably head home early in the morning, but I won't expect either of them in church. If there is a problem, Sophie will be admitted and they'll certainly not be in church in the morning! I guess what is worrisome about this trip is how sudden Sophie's temperature went up. In the past, she had been sick for a day or two and we had been monitoring her temperature. Although we check her temp every day, she's been fine--a normal, happy, healthy child (under the circumstances, of course).

Posted by Randall at 10:09 PM | Permalink

3:00 AM: We're home! She's coughing a lot, but her ANC was really high (11, which is the highest I can remember it ever being). The chest x-ray showed some haziness, but they don't think she has an infection--it looks viral. They gave her a dose of antibiotics and some tylenol, so her fever was gone by the time we left the ER. If she has another fever tomorrow, we'll need to head back for more antibiotics, and by tomorrow, they'll have more information from the blood culture. I'm going to bed!

Posted by Susan at 03:00 AM | Permalink | Comments (1)

8:45 PM: I'm sure those of you who have read our updates over the weekend are eagerly awaiting a report on Sophie. She's doing well. We had a little scare this morning when she woke up with a fever. Well, I should say, Elisabeth woke us up at 8:30, thank you very much, and she felt hot so I took her temperature (101.2). I really felt like I needed to take a shower and eat something before I ran off to the hospital, so I waited to call the doctor until I was closer to ready to go. Randall was already at church for a breakfast, and I assumed Elisabeth had still been asleep when he left, but I wasn't sure whether he was coming back to get her, so I figured I might need to drop her off at church before leaving. Well Randall came home while I was in the shower and took Elisabeth with him when he went back. When I had pulled myself together, I took Sophie's temperature again, and it was normal (a ray of light!). So I called the doctor, and she said that they had given a 24-hour does of antibiotics around 1:00 AM, so even if Sophei was running a temperature, there really wouldn't be anything more to do during that 24-hour period (another ray of light!). So she said if Sophie runs a fever during the night and seems to be feeling bad (although who can really tell whether liddle-of-the-night lethargy is due to illness or the fact that it's the middle of the night?), we should bring her back to the ER. Otherwise, we could just bring her in to the clinic on Monday. And if she doesn't run another fever (and she hasn't seemed to have one any other time today to far), we can just bring her to her normally-scheduled appointment on Tuesday. She said they might xray her sinuses just to make sure they don't need to consider a different antibiotic. She coughed her head off last night, but hasn't been coughing as much today. If she coughs a lot again tonight, I might give her some Delsym cough syrup. I think we've pretty much caught up on our sleep. I napped for 3 and a half hours, and Sophie slept for four and a half hours. Unfortunately, that probably means she'll have trouble going to sleep tonight.

Posted by Susan at 08:42 PM | Permalink | Comments (1)

8:10 PM I will try and get an update done quickly before Susan and the girls return from dance class. After a long day at work, Susan was kind enough to take both girls so that I could have an hour or two to work on my commissioning papers--very much appreciated and very helpful!

Sophie has been coughing a lot today, but she seemed to have a decent night and thankfully did not have any more fever since early yesterday (Sunday) morning. She got up complaining at some point and Susan went and spent the rest of the night sleeping next to Sophie, but that seemed to do the trick. Sophie slept right through Susan getting up early and getting ready for work. Elisabeth had a day off from school today, so she stayed home and mostly stayed out of my hair so I could work. Both girls slept in a little bit and I finally got Sophie to daycare around 9:15 or so (I carried her upside down into the classroom--we may have a little transition tradition here that keeps us all happy with drop-off). I'm certainly glad that she is feeling better.

Tomorrow Sophie and Susan will leave early for a trip to Chapel Hill. Sophie will get a spinal tap (under sedation, of course) and a "squirt" of vincristine in her line. Depending on how sedation goes, it should not be a terribly long day, although things do get crazy at the clinic sometimes. Of course, a clinic trip means that we start the five-day steroid regimen, so pray for us, especially as we get close to the weekend. The last two months of steroids have been not terribly bad, but we're always anticipating the potential negative side effects (particularly the crankiness). Other than that, we are all just moving along, day by day getting through all of this.

Thanks for keeping up with us!

Posted by Randall at 08:09 PM | Permalink

8:30 PM We have a good report to post tonight. Sophie's clinic visit went very, very well. We tried very hard last night to prepare her for what would happen and assure her that Susan would never let anything bad happen to her and although it might be scary, we know that she (Sophie) can be very brave. Well, that must have worked. Everyone commented on how well Sophie went into the treatment room (they know what she is normally like). Susan was very relieved, I'm sure. Sophie's counts remain strong. In fact, they are bumping up her dosage just a little bit (they had cut it back because her counts had dropped too low). Sophie has been cheerful and happy all day today, although she was not at all happy about taking her medicine this evening.

The doctor was somewhat concerned that Sophie seemed to be developing an allergy to the dressing (once again). In fact, he said that when they prepped her for the spinal tap with the betadine, her skin seemed to react even to that. He prescribed Zyrtec to keep the allergic reactions down a little bit, which is pretty funny, actually, because our friend Madi is also taking Zyrtec, which we found out this past weekend. Susan got to see some familiar faces at the clinic, and, as always, there were new faces there as well.

Which brings me to the downer for tonight's post. We know of a young boy named Diego who is undergoing treatment at UNC. Diego is five years old and recently had a recurrence of the cancer that brought him to UNC in the first place. It sounds as if St. Jude Children's Hospital might be able to help him, but his situation is very tenuous. Our hearts go out to Diego and especially his family. We will forever be touched by the stories of children and their families who struggle through childhood cancer.

Posted by Randall at 08:16 PM | Permalink | Comments (1)

9:10 PM: Not much new to report here. Sophie seems to be feeling well, although she's still coughing. One of her doctors from UNC called today to report that the x-rays of her sinuses do show evidence of an infection. So she'll take zithromax for 5 days, then off for 5 days, then on again for 5 days. It's a coated caplet that's not too big, and she swallowed it just fine after dinner tonight. She also did well with her chewable zyrtec tonight. I decided to start the new laxative (lactulose) in the morning, because she already had 5 medicines to take tonight not counting that. Thank goodness we print out a spreadsheet showing what medicines she needs to take each morning and evening, or I'd never be able to keep it straight.

We have lots of good news today. Randall mailed off all the materials for his commissioning papers today. Forty-three pages' worth of answers to 16 questions, a bible study outline, and an audio copy and manuscript of one of his best sermons (four copies of each). We (all four of us!) will head to New Mexico on February 21st for his interviews with the committee. We will stay until Saturday, and we're very excited to catch up with old friends. Now he has to write a four-page paper (due for class tomorrow) and a sermon for Sunday. I'm sure he'll get a breather soon! Then again, four pages sounds like a cakewalk after everything he's written lately.

Our second bit of good news is that I found out today that two of the articles I revised in December have been accepted for publication in a journal called "Justice Research and Policy" (no word on the third one I resubmitted in December to a different journal, but it was a conditional acceptance, so I think I have a good chance). I had never submitted anything for peer review to any journals, so to have more than one hit at once is really satisfying. Maybe I'll quit saying I don't know what I want to be when I grow up--I think I might be good at this research stuff after all!

Our third piece of good news is that Randall found out today that he has been selected to go on a trip to South Africa this summer sponsored through the Divinity School at Duke. Here's a link that describes the opportunity: Pilgrimage of Pain and Hope.

Posted by Susan at 09:10 PM | Permalink | Comments (3)

7:10 PM: We've had a pretty good day. I left early this morning for work so I could get in plenty of hours before leaving to pick up the girls this afternoon. Randall called me on his way in (he has class today) to tell me that he realized after he left that he had Sophie's blanket in the back seat of his car. So he took a little detour and dropped it off at my office. It was nice to see him in person when I hadn't been expecting to. Sophie seems to be feeling well today. I can't tell whether the new medicines are making a difference, but I will say she doesn't seem to be coughing as much, and her teachers didn't point it out the way they usually do.

I just read the above paragraph to Sophie, and she asked for a piece of paper to write a letter to her daddy. This is what she said out loud as she wrote: "Dear Daddy, Please would you leave my blanket at home, so I can find it to be happy. Love, Sophie"

Our good news yesterday focused on me and Randall. Today, it was Elisabeth's day to shine. We got her report card today, and she got all A's (which is good, because she has to maintain all A's to be able to stay in the AG--academically gifted--program). She got her A in math by the skin of her teeth (it was a 93, which is the bottom of the A range). Her teacher says she's just in her own world sometimes. Speaking of teeth, Elisabeth finally lost her loose tooth today. Literally. Several girls in Elisabeth's class pulled their teeth out today, and each girl got a little necklace to keep her tooth in. Elisabeth lost her necklace at some point. Her teacher said she cried and cried about it, and several teachers helped her look for it. Eventually, her teacher wrote a note for Elisabeth to give to the tooth fairy, and that seemed to make her feel better. Whenever Elisabeth loses a tooth, she gets a visit from two tooth fairies. One is Oma (Randall's mom), and the other is the "flying tooth fairy." [I just got off the phone with Oma shortly after I finished writing this update, and she told me that one of Elisabeth's friends--Stevie--who lives in Clarksville near Karin, said she wished we would write more things about Elisabeth on this web site. So, Stevie, I hope today's entry makes you happy! Elisabeth is looking forward to seeing you again on her next visit.]

Posted by Susan at 07:13 PM | Permalink

10:30 PM We've had a very full Saturday! Elisabeth and Sophie went to a birthday party this morning for Elisabeth's friend Haley. They had a great time and both girls got to make a "scrapbook" using pictures that we sent with them. We came home and Sophie took a nap with Susan while Elisabeth and I played. Surprisingly, Elisabeth really did not want to watch much TV today at all. It was a mixed blessing! After nap, the girls rode their bikes around outside and played for a while, and Elisabeth and I picked up some branches that had fallen in the yard.

This evening the Children and Family Ministries committee from our church sponsored an ice-skating trip, and we had well over 30 people go! Everyone seemed to have a terrific time, and Elisabeth even scooted around on the ice a bit. She fell down a fair amount, but never got upset and seemed to enjoy it. I was very proud of her independence. Sophie was not at all interested in skating, which was just fine with Susan.

Speaking of Elisabeth, someone at school found her tooth yesterday, so she wrote a note to the tooth fairy explaining the situation. The tooth fairy was very nice, and left both a note and $2.

Sophie has seemed a little extra tired today at times, but for the most part, the steroids do not seem to be affecting her too badly. It looked today like she was having a bit of a tough time getting up and down from the floor, which may be the steroids, but she always gets her strength back before too long (and she finished the steroids today).

Posted by Randall at 10:18 PM | Permalink | Comments (1)

11:00 PM: All is well in the Brumbaugh/Partin household. Sophie seems to be doing better (although now I'm having lots of congestion and coughing). Our trick for getting Sophie in to daycare today was that today is "hugging day" so she wanted to give her teachers a hug. The "hugging day" tradition started over the weekend, and I'm not sure what prompted it. Saturday was hugging day, and Sunday was kissing day. Whatever works, I suppose!

Yesterday was a busy day. After church and nap, we enjoyed yet another birthday party and Ms. Patti from church came over to babysit so we could go out. The girls were still up when we got home, and as we were winding down for the evening, Elisabeth injured herself yet again. Her Oma is pretty klutzy, so maybe it's genetic (hi, Oma!). From what we can gather, she had gotten out of the top bunk to get something and slipped on her way back up. She managed to fall into the top bunk but really bruised her hip and knee when she slipped.

Tonight, Randall had a meeting at church while I took Elisabeth to dance class (and had Sophie with me). Sophie joined the other class that was meeting (teenagers mostly). At one point, I peeked in on her, and she was dancing her little heart out while the girls were doing their routine. When we got home, it was past bedtime, and we still needed to do Sophie's dressing change. As I gathered supplies, Sophie started whining about something, and I loudly told her to "Stop!" Our new rule in the household is that whenever someone yells, they get a time out. So Elisabeth let me know that I needed to have a time out. She told me to go to my room and set the timer for one minute. I was happy to have a moment to myself, and Elisabeth monitored me to make sure I didn't talk. Before I knew it, the timer went off, and we proceeded with the dressing change. It went pretty well. Sophie decided that she was going to take off the dressing herself, but we had put on the tegaderm dressing instead of the IV3000, and the tegaderm is more adhesive, so she got kind of upset and I finished the job. Elisabeth distracted her, and she stopped crying before too long. Her chest didn't turn bright red this time like it did last time. I don't know whether the Zyrtec she's taking made the difference, or whether the fever she had last week casued the redness and irritation. Either way, we're glad things are better.

Posted by Susan at 11:03 PM | Permalink | Comments (2)

8:00 PM Susan, Sophie, and Elisabeth are singing "Twinkle, Twinkle, Little Star" at the top of their lungs across the hall. We're having some quality time with the girls before bed time. Susan had a women's meeting for church this evening and I took both girls to dance class. I got some reading in for my class while the girls danced. I did stop a couple times to peek in on them, though. Sophie's class is working on a routine to "Teddy Bear" that is just too cute. Actually, it was almost more entertaining to see the parents and grandparents crowd around the observation window as soon as the song came on!

I'm glad that Sophie is finding a creative outlet for all of her energy. She looked so happy in that class and she is such a ham. The ladies that work at the studio just eat it up and encourage her even more--someone called Sophie the "queen" of the studio because she pretty much does whatever she pleases. And we wonder why she gets upset when we try to rein her in at home!

Actually, both girls seem to be reaching a mellow behavioral plateau. These come and go, and then all of a sudden we're pulling our hair out about how the girls are acting. I'm so thankful that Sophie made it through the steroids with minimal side effects. Of course, she'll be back on them again in just a couple of weeks. I realized today that Sophie will be going to the clinic on Valentine's Day, which means she'll miss Valentine's Day in her class. It's probably a bigger deal to us than it is to her, and I'm sure there will be celebrations at the clinic. At the moment, Elisabeth seems more excited about Groundhog Day than Valentine's Day!

Posted by Randall at 08:00 PM | Permalink