Sophie's World

1:30 PM Neither Susan nor I posted an update yesterday. Weekends seem to be "down time" on the blog anyway, and Susan and I had gone to a party hosted by one of Susan's co-workers. I spent much of the morning getting prepared for worship, and had the evening (mostly) free from worrying about bulletins and sermons and the like. Ms. Patti from church came and stayed with the girls. Both girls were very pleased and excited she came--Elisabeth had been looking forward to it for days. It was nice having "date night" on a different night. In fact, I think Saturday night might be a great time to have date night in the future.

Sophie is doing very well. She had been constipated, but that cleared up last night (sorry, Patti!). She has been a source of boundless energy and enthusiasm all day today. It's amazing! Elisabeth is likewise doing very well. Both girls have been in need of a bath, so we're getting them cleaned up now (Sophie finished up in the tub a while ago and Elisabeth will get out soon). We're looking forward to a quiet afternoon at home and Bible Study this evening. We're not sure yet if we'll go out on a "date" as a family afterwards or if we'll stay at home.

Thanks again to all of you for your support, your comments, your love, and your prayers. It has meant a great deal to me personally and to us as a family to have so many of you express support for us this past week. Treatment wise, I'd like to think that we're coming to the end of this particular phase. Sophie goes in the next two Wednesdays and that will be it. Of course, this Wednesday is her final PEG shot (sort of a celebration, although not a happy one), and next week she'll just get vincristine. We finished administering the ARA-C on Friday, and her final dose of thioguanine is tomorrow night. Granted, there will be a whole host of drugs in the next round of treatment, but that will be the final phase, and something to look forward to.

Posted by Randall at 01:33 PM | Permalink

9:00 PM: I've been at work much of the day, so Randall probably has a better idea of the details of Sophie's day than I do, but here I am sitting at the computer, so I'll do my best. Sophie said she had a good day with Tesha, playing "school" and laughing. Today was Sophie's last dose of thioguanine (she took it for 14 days), so for now our daily medicine will be down to septra (an anitbiotic) three days a week, and we won't need to give her anything for nausea. She's a real trooper about taking medicine, but it will be nice to have one less thing to worry about and remember.

Lately, we've been having to use more tape than normal at the top and bottom of her dressing, because it doesn't seem to be sticking well. We changed the dressing tonight, and her skin was bleeding a little bit where she pulled the tape up (apparently the tape sticks well, even if the dressing doesn't). This time we used a dressing called Tegaderm instead of the IV3000 we had been using. Tegaderm is what we used originally, and we thought a while back that it was irritating her skin, but it seems to be a little more adhesive, so we'll see whether it holds up better during the course of the week. If it seems too painful when she pulls it off next week, we'll go back to the IV3000 and extra tape. I'll be curious to see how that goes.

Elisabeth went to dance class tonight, and for the second week in a row, she became hysterical when Randall dropped her off and prepared to leave. Randall packed her back into the car and came home, feeling quite frustrated. They had a good talk when they got home. She had wanted to take two classes: jazz and clogging, both of which are on Monday night; one at 5:00 and one at 7:00. We usually pack a dinner for her, and she eats between classes. She told Randall that she wasn't enjoying clogging as much as she thought she would and that she didn't enjoy that hour between classes. So the new plan is to stick with jazz on Monday nights and take ballet on Tuesday nights. We prefer ballet to clogging, so although it means two trips to town, we think this will work out better. We're thankful that Janice was willing to let her switch (and we're also thankful that we had borrowed the expensive clogging shoes). I'm glad Randall was able to help her come up with a plan we can all live with.

You may have noticed that we slightly changed the look of Sophie's weblog tonight. We've added a bit of color and a photo to the main index page. We'll continue to play around with the design, and we're also trying to come up with a better title for the site than "Sophie's Health Updates." If you have suggestions, please share them (in comments or by e-mail).

Posted by Susan at 09:05 PM | Permalink | Comments (4)

8:15 PM: I think everyone in our household had a good day today. Sophie seems to be feeling well and enjoyed her time with Shatesha this morning, which was followed by a good long nap (all of which meant I got lots of work done while I was at home with her). I picked up Elisabeth a bit early from afterschool care so she and Sophie and I cold have a quick dinner together before Elisabeth's new Tuesday night ballet class. The girls had a picnic in the back of the minivan, which they loved.

Elisabeth didn't shed a tear or seem the slightest bit intimidated about stepping into a completely new class tonight. I stayed and watched, and I'm really pleased with the way the instructor is handling the class. Elisabeth worked hard and really enjoyed herself. She was a total chatterbox on the way home. I asked her if it was a good day today or a bad day (it was a good day). Then I got curious and asked her what has been the best day in the last year. I thought she would say it was her birthday. She told me it was St. Patrick's Day, apparently because they made a huge and wonderful mess in her classroom at school. I got no further explanation than that. Then I asked her what was the worst day in the last year. Without hesitation, she said it was when she broke her finger because of the TV falling on her.

Randall also had a good day on campus, and his evening class had been cancelled, so he was able to come home earlier than normal. It's nice having him here to tonight. He and Sophie will head out to Chapel Hill early in the morning for her weekly treatment. She'll be getting the dreaded peg shots, plus a squirt of vincristine in her line.

Posted by Susan at 08:17 PM | Permalink | Comments (1)

8:45 PM Today has been a long, long day. Sophie and I left this morning right at 6:00 AM (it was still quite dark) and went to the clinic. The clinic was not terribly busy today, which was nice. Normally it's a "zoo" (as our doctor refers to it). Sophie's Carolina Pal, Adrianne, was there, which was nice (have we mentioned her before? Basically, the Carolina Pal program pairs a UNC undergraduate with one oncology patient and every time the child is in the clinic, the undergraduate, if they are available, comes to visit and play with the kid). She and Sophie played quite a bit on the computer in the play room.

The treatments went well. After a quick exam, Sophie and I went into the room that is normally used just for blood draws and the like, so there was no trauma associated with any of that (yet). The nurse drew blood, administered the vincristine and the next thing you know, out came the lidocaine spray and the PEG shot. Sophie got agitated only at the very last minute (once the spray came out) and that was that. She cried for a fair amount afterwards, but she got a Shrek Band-Aid and before long, was back to playing. Surprisingly, her counts are strong, and her immune system count (ANC) is even higher than last week. The nurse was already preparing me for the likelihood that Sophie will need a transfusion next week (or sometime after that) once her counts bottom out from this round of treatment. Today felt a bit like a milestone, though, as it was the last PEG shot and after this we have one more dose of vincristine and we're done (until the next round).

We were back on the road around 10:00 AM heading home. By the time we got home, it was all I could do to stay awake and get lunch prepared. Needless to say, we both crashed after lunch for a nap! I don't know when I have ever felt so tired.

Susan had a busy day at work, it sounds like she is feeling overwhelmed. Elisabeth had a good day at school (they had an assembly today, which is always fun. I can remember having assemblies when I was a kid).

Posted by Randall at 08:50 PM | Permalink

7:00 AM: I see that neither of us got around to doing an update yesterday. It was a day full of work. Randall has a midterm exam (take home, three essays) due today at 4:00, and he has spent quite a lot of time working on it. Last night, he worked until 11:00. He just has one more essay to write today. He's starting the day with a headache, so I hope that won't interfere too much with his progress.

Tonight, Randall and Elisabeth will join other dads and their kids from church on a weekend camping trip. The camp is just on the other side of Fayetteville, and they are really looking forward to it. They'll come home Sunday afternoon, so the church (the ones who aren't camping, at least) will have a guest pastor.

Sophie and I will be leaving this morning to visit my mom and grandmother. We're hoping a visit from Sophie will really perk Nannie up, since she hasn't been feeling very energetic. I'm looking forward to long and wonderful talks with mom after the the other two go to sleep. Sophie has been feeling well, and she's not even due for any medicine during our time there, so it should be a pretty stress-free weekend.

It's unlikely we will be able to do updates while we are gone. Randall won't have any internet access, and mom's internet access can be unreliable, especially when it's been raining (which it certainly has lately). So, if we don't check in sooner, we'll let you know how we're all doing on Sunday night.

Posted by Susan at 07:05 AM | Permalink

6:30 PM: We're having a good time at Grammy and Nannie's house. We arrived yesterday just after lunch time. We had stopped on the road earlier at a McDonald's, because we got hungry. It was a rather strange experience. I did the drive-through so that I wouldn't have to take Sophie inside (her ANC was pretty reasonable on Wednesday, but I don't know how quickly it was dropping). I didn't have any cash, so I handed the lady my credit card after I had ordered. She said she couldn't take cards at "this register" (implying that other registers would accept the card). When I told her I didn't have cash, she asked if I wanted to cancel the order. I said no and told her I couldn't come inside because I had a child with cancer in the back seat who couldn't be exposed to lots of people. I don't think I've ever played the "cancer card" (and it made me feel guilty to do so), but boy did she turn her attitude around. She spoke with the manager, who ran the card at another register inside, and they couldn't have been more polite and friendly after that. In fact, when she handed me the card back, she gave us an extra Happy Meal toy (the toddler version, which Sophie has really enjoyed) and said "God Bless you." It was nice to get what we needed, but I sure did hate having to be manipulative to get it.

Sophie has been flitting around the house, making everyone laugh and smile. Mom says Nannie is smiling and laughing more than she had been, so Sophie seems to be doing a good job of cheering her up.

Randall called from the road as he and Elisabeth were headed to the camp. They had all stopped for dinner on the way there, and it took a long time, so he was getting antsy to get there. He hasn't called since, so I don't know whether he doesn't have a signal or they've just been too busy. It stopped raining here today, so I hope they're having good weather.

Sophie seems to be feeling well and has a good appetite. She's getting several ugly bruises, so I think her platelets are getting pretty low. I wouldn't be surprised if she needs a platelet transfusion on Wednesday when she goes back to the clinic.

Posted by Susan at 06:37 PM | Permalink | Comments (1)

11:00 PM: It's been a long day, but our little family is reunited after a weekend apart. We're all doing well and will be happy to be sleeping in our own beds tonight. Sophie traveled well today, although she nearly got sick when we first started out. I don't know if she was just carsick, or if it was something else, but I had brought along some zofran, and that seemed to take care of it. She slept for the last hour of the trip. Although we had a babysitter, neither girl was quite ready to be left alone, so I hung out during bible study and met Randall for dinner after the girls calmed down. I absolutely don't feel like driving in to work tomorrow (or working once I get there), but I'm sure once I get started, my motivation will return.

Posted by Susan at 11:00 PM | Permalink

9:15 PM Today has been a very full day. I guess "the day after" is almost always like that. Today we all fell back into our normal routine, after all the traveling we did this past weekend. Not surprisingly, we all overslept this morning. Actually, the volume on the alarm clock was turned down all the way, so when I opened my eyes at 7:18 and saw daylight, I knew something had gone wrong. Susan and I hopped out of bed and got Elisabeth dressed and ready for school in record time. I had a meeting this morning for a school project, and Susan worked from home today.

Sophie seems to be doing really well. She has a couple of bruises (one on her heel, one on her elbow and one small one on her forehead), which probably means her platelets are getting low. Other than that, she seems fine. Her appetite is picking back up a little bit, and she has tons of energy. She got up after we did this morning, which is probably due more to all the traveling yesterday than anything else, but we'll keep our eyes on her tomorrow.

Tonight we all went to Pizza Hut for dinner and took Elisabeth to dance class. She was so excited (quite a turnaround from last week!). While Elisabeth was in class, the rest of us did a quick WalMart run and bought some mums at Lowe's. The air was cooler today than it has been in months, so hopefully fall is not too far off. On the way home Sophie and Elisabeth were giggling and acting up and then Sophie started singing a song. A completely made-up song. I don't even remember the tune or the words, but it had something to do with "being with you when you're scared" or some such thing. When Elisabeth asked, "Where is that song from?" Sophie answered back "It's from my heart."

Posted by Randall at 09:18 PM | Permalink | Comments (2)

8:00 PM: After we had an alarm malfunction yesterday and didn't wake up until 7:18, Randall was careful to check the volume on the alarm clock and find a good station so we wouldn't repeat yesterday's problem. Unfortunately, he then forgot to actually turn the alarm on. So this morning, when we woke up at 7:30, we really were running around frantically to get Elisabeth out to the bus by 7:40. But we made it with a minute or two to spare, and I do believe I will be double-checking the alarm settings tonight.

Randall is on fall break this week, so he doesn't have to go in to Duke for classes. We both worked at home today. Sophie did well, except when I decided it would be a good idea to go ahead and get her bath out of the way while Shatesha was here this morning. She cried the whole time, and ultimately Shatesha had to leave the room while I did the bathing. Randall pointed out that we've never had anyone but family give her a bath (it's not something we ask babysitters to do, for example), so it's not surprising that she wouldn't feel comfortable.

Tonight, I took the girls to Elisabeth's dance class (where I got the chance to talk with another mom whose child just finished treatment for cancer--Ewing's Sarcoma--she had a 20% prognosis and is doing well). Randall is spending tonight volunteering with a medical group that works with some migrant farm workers in our area. He's been interested in this organization for quite a while, and it also satisfies the requirements for a class project. He'll do that a few more times during the semester and will look for other opportunities to continue being involved.

Tomorrow, Randall will take Sophie for her last clinic visit in this fourth round of treatment (delayed intensification). Another milestone. The only chemotherapy she'll have to get is vincristine in her IV line. They'll check her counts when she arrives to see if she needs a transfusion. As Randall mentioned, her bruising indicates her platelets are somewhat low, but she isn't bruising in unusual areas or showing signs of petechiae, so I wouldn't be surprised if the levels are okay for now. Next week, they'll be checking her counts to see if her ANC is high enough to start her last (and final) round of chemotherapy. This maintenance phase will involve less-frequent visits to the clinic and a fair amount of medicine given at home, and it will last until the end of May 2007. We're in this for the long haul!

Posted by Susan at 08:01 PM | Permalink

5:00 PM Unfortunately, there was no alarm malfunction this morning, and I got out of bed around 5:20 (did I mention that I am not much of a morning person?). Sophie and I got ready and left the house around 6:15. There was pretty heavy traffic, so we didn't get to the clinic until right at 8:00.

In their infinite wisdom, UNC Hospitals has "centralized" the check-in procedure for all oncology patients in the various clinics, which means that all the cancer and radiology patients have to go to the same spot on the ground floor of the Gravely building. This innovation has never been as satisfactory as the old procedure, and it just seemed like another layer of bureaucracy. Anyway, for some reason, this morning the check-in stations were understaffed and it was a zoo. Sophie and I waited 30 minutes just to get checked in, and I'm sure that the wait got longer than that (the line certainly did).

Anyway, all of that to say that it was a long morning. Adriane, Sophie's "Carolina Pal" was there waiting for us, and Sophie played with her quite a bit. We did the exam thing (no problems), and talked about the possibility of a flu shot. The nurse recommended we wait until the next clinic visit, because Sophie will need to be sedated for that procedure, and they can do the flu shot then as well. Brilliant! One of the more interesting things that happened today was that the nurse wanted to do Sophie's blood draw and chemotherapy in the treatment room (the "scary place" as Sophie calls it). I explained to Sophie what we were going to do and where it was going to happen, and she didn't have any problems with it at all. After all that she has been through (and after all that we have had to watch her go through), it is such a wonderful feeling to know that she still trusts us and believes us when we tell her something!

The infusion went very quickly and all we needed to do was wait for the blood work to come back. No transfusion. In fact, although everything but her platelet count dropped, the drops were very slight. As for her platelets, the count has gone back up significantly (from 89 to 279--which is actually within the normal range). Sophie's ANC is 0.5, which is right at the cut-off for a compromised immune system, so we'll need to take extra precautions. In spite of the early morning, and in spite of the frustrating check-in, I was positively giddy when we left at 10:00. Because we have made it through four rounds of chemotherapy! Thanks be to God!

We still have the marathon final round of chemotherapy ahead of us, but for the first time since January 21st, I feel as if I can exhale, if only just a little bit! We are by no means out of the woods, and complications can come up at any point in this process, but I feel like celebrating.

Home health care will come on Monday to do blood draw and if Sophie's counts are high enough for a spinal tap (which they might not be, but that doesn't bother me, not today), we'll go to the clinic next Tuesday to begin maintenance, and all of a sudden, May 2007 becomes that much closer.

Thank you to everyone for keeping us lifted up throughout this process, and continue to pray for Sophie, and for our whole family!

Posted by Randall at 05:26 PM | Permalink | Comments (1)

9:00 PM Today has been a mostly satisfying day at home. Susan has been working hard on a report for work and I tried to get back into the swing of things after the clinic visit yesterday (mostly preparing for worship on Sunday, but also taking care of some odds and ends around here).

I came across a story in the New York Times today covering some of the nightmare of dealing with all of the bureaucracy of a catastrophic health situation. It requires free registration but it's worth a look:

http://www.nytimes.com/2005/10/13/health/13paper.html

I can completely relate to some of the frustrations mentioned in this article. We frequently get notices from our insurance provider about this, that, and the other service that has either been paid or rejected. Mostly, I have learned to file those away and wait for a bill since the insurance notices all say, "THIS IS NOT A BILL." There are some errors in billing or charges that fall through the cracks and I've learned a lot about how to handle them. I cannot imagine how most people deal with the frustration of all this paperwork, or (worse yet) the stress of getting a notice from a collection agency--yes, we have received one of those, but it is for a disputed claim, which our insurance provider assures me is not legitimate. Honestly, I have seriously considered paying that particular one (about $150 worth) just to get out from under the paperwork. Just sharing all of this (apologies if I have gone on too long) as another indicator of the little stresses that can pile up in a health crisis. I am thankful for wonderful insurance coverage, but even great coverage does not promise a bed of roses. Like I said, for the most part I've become pretty adept at dealing with these glitches, but this is not exactly a skill I would like to develop, if you know what I mean!

Sophie has been fine today after her clinic visit yesterday. She got sick right at dinnertime this evening, but hasn't had any more episodes of nausea. I noticed tonight in the bathtub just how much her hair is coming back in. I guess I didn't realize how much of her eyebrows and eyelashes she had lost from the chemo. The ones that are coming back in seem so dark.

Posted by Randall at 09:08 PM | Permalink | Comments (1)

7:45 PM As you might have surmised by my post from yesterday, I don't have much patience for the health care bureaucracy. Actually, make that any bureaucracy (including church bureaucracy). Well, as if to taunt me, the kind folks over at Betsy Johnson Regional Hospital, our local butcher shop, uh, "hospital" sent a bill that came in the mail today. This particular bill was for the emergency room visit Sophie had last month when she had a clot in her line. Specifically, this was a bill for the ER doctors (we get billed separately from the ER for the privilege of spending 4-6 hours there). Basically, we're not supposed to get a bill from the ER doctors.

The problem that we have had with BJRH is that although the ER doctors are paid their negotiated rate by our insurance provider, we are charged the remainder, which they are not allowed to do since they are bound by the contracted rate with our insurance company. So, every time one of us goes to the ER (Sophie at least 3 times this year, Elisabeth once--remember the TV?, and myself once), we get this bill with an erroneous charge on it. In fact, one of these bills has now been given to a collection agency, although I have tried to get it straightened out for months.

So, I called the insurance company and explained that we need another one of "those" letters--the letter reminding the ER doctors that they have been paid the negotiated rate and they are not to charge us anything above and beyond that. So, that will be in the mail some time in the next two weeks. In the meantime, I thought I'd call someone at BJRH and see if there is any way to correct this error beforehand, or at least get some assurance that the next time we go to the ER (there will likely be a next time), we won't have to play this game anymore because I'm tired of it. The very nice lady at BJRH informed me that the doctor (who is not affiliated with BJRH anyway but is a private contractor) is probably not part of our network, which is why we are getting charged. Never mind that the very logic of a "contracted rate" should suggest to her that this doctor does, indeed, have some kind of contracted relationship with our insurance company. After several minutes going around and around with her, I finally read her, word for word, one of the previous letters from our insurance--the one reminding the ER doctors that they have been paid the negotiated rate, etc. Finally, we made some headway, and I will (hopefully) be forwarding her this letter (again) soon to clear this up. Now, here comes the best part of all--when I asked if there was any way to prevent this from happening in the future (it must be some oversight somewhere that does not register the doctors as contracted with our insurance provider), she basically told me that I would have to send these follow-up letters any time I get another charge like this in the future. So, the answer is, no, this problem cannot be fixed, it will remain your problem and your responsibility to rectify it every time you go to the ER.

We're looking for a new ER.

Sophie's been great today. Lots of energy and her appetite picked up again this evening. Today at lunch she turned her nose up at a Sunny D, which is her drink of choice at the Grocery Barn, so I figured her taste buds must be affected by the chemotherapy she got on Wednesday.

Susan's been working extra hard these last few days (she is on her way home only now and left early this morning). She said earlier that she would like to get some new pictures posted (I'm not sure that there are any pictures of Sophie completely bald), so maybe by me saying this she'll feel motivated to do that this weekend. I'm sure it'll be a relief to focus on something else besides work!

I finished up Sunday's sermon this morning and got cracking on next week's reading this afternoon. I had been reading ahead this week, but all of a sudden, semester break is over and I've got reading to get done by Tuesday. In the meantime, I need to get ready for Charge Conference and Bible Study (both on Sunday).

Posted by Randall at 07:52 PM | Permalink

10:45 PM: Was today Saturday? I suppose it was, though I ended up putting in 6 hours on that report I've been working on. The girls seemed to have a pretty good day, and Randall managed to get some reading done too. Our major accomplishment of the day was cleaning up Elisabeth's room, including her bunk bed. The sheets in the top bunk were so covered with cat hair, you could hardly see them. Not only did Randall strip everything out of the top bunk, he took down the "tent" that surrounded the bottom bunk, and now it's so much brighter in her room. The girls and I also walked across the road to visit our neighbors, who were having a yard sale. Elisabeth got some clothes and is thrilled with them. She also took her birthday money and bought herself a Strawberry Shortcake doll. I took the opportunity to remind her that we didn't get a single thing for Sophie, so she should remember that the next time she says Sophie "always" gets things that she doesn't get.

Sophie is doing well today. No more nausea, and plenty of energy. Her biggest trauma of the day was that I removed the bandaid from her peg shot (what was that, two and half weeks ago?). I pulled it off without warning because I tought it was time. She disagreed. Loudly. We compromised. I cleaned it up (removed the remaining adhesive, followed by alcohol), and put on a new bandaid.

Her one remaining long hair is still attached, and there's lots of new growth. I didn't get a chance to get more recent pictures uploaded today, but I really hope to do that soon. I looked at the pictures we posted last month, and I was surprised to see how big she still looked in them. She's much thinner now. I don't know if she'll ever get back down to her pre-steroids weight (29 pounds), but she weighed 33 pounds at her last clinic visit, and she seems to be losing about a pound a week.

Posted by Susan at 10:46 PM | Permalink

9:00 PM: We finally got through today. Randall woke up with a terrible migraine headache (with nausea) this morning, took four ibuprofin and went back to bed until a half hour before we had to leave for church. He was still feeling pretty crummy during the service, but he said his adrenalin kicked in, so it wasn't too bad. Since we had both missed church last week (him camping, me going to my mom's church in VA), it was good to see our friends.

We went out to lunch after church (the noise was hard on Randall), and then we spent the next hour getting all the paperwork ready and copied for the meeting. The meeting went well, and it wasn't long before his headache went away. While he was gone (and for a while after he came back) I did some more work (different report this time), and then we went out to dinner and grocery shopping. Our babysitter cancelled, so date night turned into family night. The girls are in bed now, not a moment too soon. We really could use some child-free time tonight!

I realized tonight that I've gotten so used to Sophie being bald that I don't really think about it or watch for reactions form strangers when we're out in public. I never thought that would happen. Tomorrow the home health nurse will come to draw blood, and we'll find out whether she's ready to start the fifth and final round of treatment. We're very curious to see what the results will be.

Posted by Susan at 08:54 PM | Permalink | Comments (1)

8:30 PM: It's been another full day for our family. Randall went to a workshop in Durham in the morning and got home around mid-afternoon. Elisabeth went to school, and had piano and dance lessons today. I worked all day on that same report (submitted today, thank goodness, although it was especially intense when the network shut down right before 5:00). Sophie had a good day and doesn't seem to be suffering from any side effects. Nurse Amy came and drew blood for a CBC. The results weren't terribly surprising. Her platelets were quite high (387), and her red and white counts were low. Her ANC was 0.1 (or 100), which means that she's very susceptible to infection right now. She can't start maintenance until her ANC reaches 0.75, so we're waiting at least one more week (probaby two or three, knowing her). Her red count (hemoglobin count of 7.5) had dropped from the previous week and is on the borderline for needing a transfusion. They said as long as her energy levels seem okay (which they do), we won't do a transfusion, but we should report any changes in how she is acting during the week. We need to take her temperature regularly and watch for signs of infection.

We got a call from my mom today, who had to take my grandmother to the hospital after a scare during the night. She's being admitted for the next few days. I could tell mom was feeling worried and shaky, so I am eager to hear how things have gone this evening.

Posted by Susan at 08:34 PM | Permalink

8:00 PM: Sophie and I were on our own all day today. Elisabeth went to school, and Randall left for his classes around 9:00. We gave Shatesha the day off because there was a possibility we would be at the clinic today. Sophie was content to play and watch TV (more of the latter than the former, I'm afraid) while I worked. It was a pretty productive day. Sophie slept soundly during her nap, and I had to wake her up at 4:30 to go get Elisabeth for dance class. We ate at Sonic (the girls had a picnic in the back of the minivan), and Sophie and I hung out in the minivan while Elisabeth was in class. Of course, Sophie had to go potty twice while we there (which sort of defeated the purpose of staying in the minivan), but we went in and got out quickly, armed with hand sanitizer. As I write this, Elisabeth is practicing piano (supposedly), Sophie is playing quietly in her room, and Randall is on his way home.

I tried calling Nannie's hospital room several times today and didn't get an answer from Mom, so I called one of the neighbors, who reported that they would be running tests today and that she might be released as soon as tomorrow. I hope they have a good night.

Posted by Susan at 08:00 PM | Permalink

8:00 PM It has been a while since I've posted, and I guess I'm feeling the pressure to say something profound, especially after my ranting about the health care bureaucracy the last time I posted. Things are not much better on that front (worse, in fact), but there really isn't much to say about it other than that it is an unfortunate fact of life in our current health care system. We are extremely grateful to have excellent coverage and wonderful medical care for Sophie.

Sophie seems as energetic as ever. Hopefully that is a sign that her counts have not dropped much further. Generally speaking, it seems as if the platelet count runs ahead of the others, so when it drops, the others follow, and when it rises, the others follow. Her platelet count was higher this week than last, so maybe things are on the upswing by now. Somebody asked if it was good news that Sophie didn't get to have treatment this week. I must be becoming numb to the process because it took me a while to decide whether or not it was a good thing. Ultimately, I guess it's nice not driving to Chapel Hill, but other than that, it's neither here nor there (the treatment will take place eventually).

We had an unexpected surprise today. Elisabeth handed me a clipping from a local paper--maybe yesterday's Sampson Independent, but I'm not sure--and there, with today's weather prediction is a beautiful drawing by Elisabeth! They even got her name right and everything. She was so proud to get her name in the paper (and, I might add, for a good reason). I'm proud of her too!

Since we have been so enthusiastic about letting folks know that Sophie completed the fourth round of treatment, a lot of people--particularly at Duke--have mentioned that they continue to pray for us and support us. I spoke with a friend in New Mexico today and she commented on how our family has handled this situation with grace (some even mention how strong we seem). Susan and I are always stumped when folks say that because we never feel terribly strong or terribly grace-ful in this process. I guess what I'm trying to say is that if you see any strength or grace in any of our words or actions, it is not our own, at least it is not any grace or strength that we possess.

Thanks for all the encouraging words and continued prayers!

Posted by Randall at 08:19 PM | Permalink

8:20 PM: It's been a busy week, but I tried not to have a busy day. Randall and Elisabeth were at school today (Randall is out late at a dinner for a church function). I worked while Shatesha was here (and a little longer), but then I took a nap with Sophie. That felt so good (except when the phone rang (twice) and the cats howled (more times than I can count)). My grandmother is still in the hospital. Mom thinks she'll be released in the morning, and they should start hearing results from some of the tests. They didn't have a private room this time, and I know they'll be glad to get home. I wish I could be there to help.

Posted by Susan at 08:18 PM | Permalink | Comments (1)

9:15 PM Sophie woke up at 2:30 this morning and although I managed to get her back in her own bed by laying down with her, she was fidgety and restless for hours. At one point she decided that she needed to go to the bathroom and she seemed fine after that. Maybe she just had a full bladder. Susan left early for work this morning, and I managed to get Elisabeth up and out the door in reasonable time. I had a full morning of visitations while Sophie entertained Shatesha (I think it works that way rather than the other way around). In spite of having a rough night, Sophie has been a burst of energy all day--running around the house at top speed. This afternoon, I took her with me to visit with Sylvia from church (hi, Sylvia!). Sophie enjoyed her visit there, mostly because Sylvia has a grandson about Sophie's age and keeps some of his toys out. Afterwards we came home and Sophie crashed (I had to wake her up to pick up Elisabeth at after school care). I took that quiet time to get prepared for worship on Sunday, although the sermon is only halfway done!

One slightly funny thing that I'd like to share is that while we were on our way to Sylvia's house, Sophie told me to be on the lookout for pumpkins (that is how we pass the time in the car these days). The cutest thing was that she went on to say, "they're round and they're orange" (as if I needed help identifying pumpkins!). Our excitement for the evening has been that I went to the building and finally got out our fall decorations. Susan and the girls went through the box tonight.

Since we had the problem with a clot in Sophie's line last month, whenever we administer saline and heparine (three times a week), we're always sure to draw back a little blood in the saline, just to be sure that we're getting flow in both directions. Tonight, there was no drawback. The saline went in, but I could not draw out any blood from the line. We called UNC and the doctor on call suggested that we just wait until Monday to see if nurse Amy has any problems with it then (we're getting another complete blood count on Monday). If there is still a clot, we may need to go the ER and get some TPA administered. That worked really well last time, although given our frustrations with Betsy Johnson, we may go somewhere else to have it done.

Posted by Randall at 09:20 PM | Permalink

9:40 PM: I've felt a little down today. I often do on Saturdays. Randall and Elisabeth went to the UNC football game today with a big group of people from church. I'm not a huge sports fan, so it wan't a huge deal that Sophie and I couldn't go, but we were both a little sad when they left and were gone all day. We had our own fun though, when we went out to buy our pumpkins (and some mums). Sophie wore a very cute halloween outfit she got last year, and she had a wonderful time. She took a long (3 hour) nap when we got home, and she woke up just before Randall and Elisabeth got home. Elisabeth was in a rotten mood, although it got better by the time we finished dinner. Once the girls were settled in bed, Randall worked on his sermon, and I went down the road to pick up the coffee cup Randall had left in the church van. I had a nice long talk with our friends. I just arrived home, and Randall is practicing his sermon. We're going to go ahead and take Sophie to church with us tomorrow. It's a small church, and her counts are probably higher now than they were last Sunday (the day before her ANC was tested at 0.1). I really hope our baby sitter doesn't cancel for tomorrow. With the hectic week we've had, we could really use a nice quiet dinner on our own (and the wonderful time we spend talking on the way to Fayettevlle and back).

As you all are probably aware, Sophie has finally lost her hair. She did, however, have one long hair that hadn't fallen out. I had become quite fond of that one hair (and enjoyed telling people that she has exactly one hair left), but yesterday when I got home from work and looked for it, it was gone. She has plenty of little hairs (some blond and fine, others dark and coarse), but somehow the loss of that one hair was significant to me.

Among the good things today (in addition to the trip to get pumpkins), I heard from two good friends today, and that was nice (hi Greg and Aunt Lora!). It's nice to hear that people keep up with us here on Sophie's web site and that we continue to be in their prayers, even after all this time. Yesterday marked exactly nine months since Sophie was diagnosed. What an amazing journey it has been.

Posted by Susan at 09:39 PM | Permalink | Comments (1)

10:00 PM We've all had a very good day. It started early this morning with a Men's Breakfast (actually, it's for everyone, but the men cook) and rolled right into worship and Sunday School. We had a pleasant dinner afterwards with a couple from church. Sophie was more than her usual, entertaining self the whole time. One of the cuter things she said today was at church. Sophie commented on how much hair another little boy had (Nathan) and quickly pointed out that she had no hair. Then Sophie went on to speculate that when she "gets bigger" her hair will grow back. Maybe it'll be white, she thought, or maybe it'll be green. I know that sometimes chemo can make your hair change, but I don't think we'll see that much change!

We're still somewhat anxious about the home health nurse coming tomorrow. We're convinced that Sophie has another clot in her line and we'll need to make a trip to the ER. We're pretty sure that we'll try Cape Fear (down in Fayetteville) this time, because they have a pediatric ER. Then again, maybe everything will be fine and we'll be able to draw blood from the line. Either way, there's not much use worrying about it. I'm glad we've got a plan for what we'll do if we need another ER visit, though. Hopefully that will be an improvement.

Ashley came and sat with the girls tonight while Susan and I went out for a much needed time together. We spend so much time talking with each other that we really miss it when our lives prevent us from just hanging out together.

Posted by Randall at 10:12 PM | Permalink | Comments (1)

9:00 PM Where to start with this day? Everything was pretty normal: Susan left early for work, Elisabeth got off to school just fine, Sophie and I stayed home. Shatesha came and watched Sophie while I read for classes this week. Nurse Amy came around 10:00am, and, as we feared, was unable to draw blood from Sophie's line.

After calling the clinic and checking in with them, we packed up and left for Cape Fear Valley Medical Center in Fayetteville--a bit further away than Dunn, to be sure, but the closest hospital with a pediatric ER. Check in went fine and the set-up at Cape Fear is actually quite nice. We got a private room (with cable TV and VCR!). All seemed to be fine, although I'm beginning to realize that no matter where we go besides UNC, we're going to be a bit of a square peg--nobody is sure what to do with us. A couple of nurses checked in, as did an ER doctor, and eventually the nurse said that Cape Fear has IV "specialists" who deal with this sort of thing and they were struggling to arrange for one to come down (because we were a pediatric case, apparently).

Finally, the same nurse came and said that hospital regulations require that an MD administer the TPA and one was on call. Three hours after we arrived at Cape Fear, the doctor came in, spent less than 30 seconds dropping in the TPA and left. On the way out, he told the nurse to wait 2 hours to draw the blood. When I asked why we needed to wait 2 hours (we only waited 30 minutes the last time we had a clot), his reply was that the manufacturer recommends 2 hours. So, we waited some more. After 1 1/2 hours (I think the nurse felt sorry for us), the nurse came and did a blood draw--worked perfectly. Another hour or so later, we were still waiting for the test results. To keep a long story from getting longer, we got home around 7:15 tonight, without having had dinner (and thankfully, Susan recommended that we stop for fast food for lunch on the way!). As we left, Sophie asked the nurse, without the slightest trace of sarcasm in her voice, "Are you going to miss us?"

All in all, not a terrible ER visit, and not a terrific one either. We'll see what the billing situation is when that comes in.

Oh, and after all of that, Sophie's counts are still too low to start maintenance therapy tomorrow, so we'll have another complete blood count to do next Monday. Hopefully we won't have any more problems with the line.

The daily "cute Sophie" report has two items:

At the ER, I was bouncing Sophie on my knee to a German rhyming song ("Hoppe, Hoppe, Reiter") and when I stopped, Sophie said, "do the Spanish words again!"

Dinner tonight was leftovers. Sophie was more interested in my pasta with tuna sauce than Clifford soup, and I eventually made her her own plate. At one point, she stopped eating and said, "this is the best chicken I've ever had." Tuna is called "chicken of the sea," right?

Posted by Randall at 09:16 PM | Permalink | Comments (2)

10:45 PM: Hey! I haven't done an update yet. It's been a fairly busy day, as I'm getting ready to go out of town for a conference. Randall and Elisabeth were in class today, while I stayed home with Sophie (no Shatesha, since we thought there was a possibility of a clinic visit today). I think I'm ready for my trip (will leave tomorrow and come home on Saturday). The girls are both a little distressed about me being gone (which is flattering, I must admit), but I'm sure neither of them will have any interest in talking to me when I call while I'm gone.

Sophie and Elisabeth and I had dinner together (Sophie's appetite could be better) and went to dance class. Sophie entertained all the parents while the kids danced. Honestly, she doesn't have shy bone in her body. There's a grandmother there who reminds me a lot of my mom's mom (Nannie), although she's a bit younger. This lady was fascinated by Sophie, even when Sophie pointed out that she had whiskers "just like my daddy", and I should say my grandmother doesn't have whiskers! (she reads these updates, so I feel obligated to point that out). She passed out pretend coins, she danced (quite gracefully), and she pretended to be a doggy who fetched pretend balls from everyone.

It's so good to hear from our friends and family (through comments, and by e-mail, and by phone). Thank you so much for continuing to keep up with us. We can't tell you how much it means to us!

Posted by Susan at 10:44 PM | Permalink

9:45 PM This has been a very long day, and I'm afraid it'll be even longer yet--I have a paper due tomorrow and (surprise!) I'm still working on it. This morning started early. I had to lead a devotion for the Bible Club at the local high school. After that, I headed off to church for our weekly pastors' group meeting. Susan stayed home to finish packing and left mid-morning for her conference. This afternoon, while Sophie (briefly) napped, I worked on my paper. Elisabeth and Sophie have both been particularly needy because their mom isn't around. In fact, Elisabeth has been sniffling this evening and I suspect she may be coming down with a cold. Hopefully Sophie's immune system can handle whatever exposure she's getting.

I've heard from Susan at least twice today and she made it to her conference okay. I'm sure she's finding it intellectually and professionally stimulating, but I'm also sure that she misses us here at home! Saturday is a long ways off and not that far off all at the same time.

Sophie just came into the office grinning carrying two books and looking all sheepish. It's 9:40 at night and she did not get a long nap today!

I spoke with the clinic and we're upping Sophie's dosage of the anti-clotting agent (Heparin) that we administer three times a week. Hopefully that will keep the line clear. I also asked if we could administer the TPA ourselves, but that was an instant no-go. TPA is heavily regulated and it can only be administered so that it stays inside the catheter. If it gets into Sophie's bloodstream, it can cause serious damage. In light of that, I'm glad we need professional help to do that (although, we have administered chemotherapy ourselves).

Tonight's "cute Sophie" report: This afternoon, Sophie was snacking on Apple Jacks and sausage (don't ask--if Sophie wants something to eat, Sophie pretty much gets something to eat). When it came time to go pick up Elisabeth at after school care, Sophie picked up her little rubbermaid cup with sausage in the bottom, added some Apple Jacks on top and carried them in the minivan all the way to school--with a coaster on top to serve as a "lid." When we got to school, Sophie carried her snack inside and gave the entire thing, coaster and all, to Ms. Lee, the after school care teacher! She sure is generous.

Posted by Randall at 09:53 PM | Permalink | Comments (1)

10:15 PM Today has been a very full day, if an uneventful one. I quit working on my paper about midnight last night and finished it up this morning (it was due late morning, so, once again, under the wire). I did not sleep well last night and there was a fair amount of getting up (with Elisabeth, then with Sophie). None of us sleeps well when Susan is gone! I used some of the adrenaline from getting the paper done to straighten up the office, pay bills and tend to several pieces of paperwork that I have been avoiding. It was a very productive day all around.

Elisabeth and Sophie had a great day. They played together outside this evening while I got dinner prepared. I enjoyed peeking out the window every now and then and catching them playing in the driveway and the yard. Dinner went well, considering it was just the three of us.

There really isn't too much that is spectacular to report today, although Sophie did insist on taking something else to Ms. Lee this afternoon! She must think Ms. Lee doesn't get enough to eat or something.

Posted by Randall at 10:17 PM | Permalink | Comments (1)

10:00 PM We had a bit of a scare with Sophie today. It was another rough night, and Sophie ended up crawling in bed with me some time early this morning. Around 4AM, she got pretty restless and told me that she was going to "sick" and needed a bucket. Part of me is thankful that her three-year old brain can sort through all these things and be so nonchalant about it all, but part of me is heartbroken that throwing up is no big deal to her. She was obviously quite nauseated, but never did throw up, and eventually went back to sleep. I had to wake her up to get Elisabeth off to the bus and she was clearly not herself all morning. She said that her stomach hurt (Elisabeth said that her stomach hurt, too--maybe it was my cooking from last night). Sophie was pretty listless all morning and ate hardly anything. Late in the morning she ran a bit of a temp, but not over 100 degrees. I ran errands (had to buy sausage and bacon because Her Royal Highness requested them) and when I came back, Sophie was already napping. She basically fell asleep on her own while Shatesha vacuumed the living room. Sophie does not fall asleep while the vacuum is on in the house, that is just not like her, but she slept for a couple of hours and, thankfully, seemed more herself all afternoon. I was quite worried and had worked out all sorts of contingency plans for getting Sophie up to UNC and Elisabeth with some of our friends here (if Sophie runs a temp higher than 101, we need to get her to the hospital).

On my errand run, I stopped by Countryside to give them an update and let them know that Sophie might be able to come back in a couple of weeks. Actually, if her counts hold up, I thought I might take her by some time next week for a visit. They seemed really excited to have Sophie back soon, and I'm sure she'll be thrilled to be back with all her friends. She still talks about all the folks at Countryside, although she reminds me (sadly) that Ms. Dawn isn't there anymore, since she moved to Virginia.

With everything seemingly better, we had a wonderful afternoon and evening at home together. I watched TV with the girls and we all ate popcorn and laughed at SpongeBob Squarepants. Both girls went to bed relatively easily tonight, although Sophie just woke up crying a couple of minutes ago and I had to tend to her. I'll be grateful to have Susan home tomorrow, and I know the girls will be happy to have her back. It's not been too bad with her gone, but it sure is better when we're all home!

Since Sophie wasn't feeling well today, she was a little "cute-challenged," but here goes:

We were in a rush to get Elisabeth out the door this morning (since it was "dress-up day" at school, it took longer to get her going), and I just picked Sophie up in her pajamas and carried her out to the minivan. As we pulled up to the end of the driveway, the bus was stopping for Elisabeth (talk about cutting it close!). We got Elisabeth on the bus and Sophie and I came back to the house. As we came back in the house, Sophie got all irritated with me for forgetting her blankie because she was cold. I suggested that she help me remember next time that we need to bring her blankie. This afternoon, as we went to get Elisabeth, Sophie said, "Don't forget my blankie!" She seemed almost as pleased with herself for remembering it as I was with her.

Posted by Randall at 10:19 PM | Permalink

8:15 PM: I'm home! In some ways it felt like I was gone for a long time (I really missed my family), and in other ways, the time just flew. The conference (Justice Research and Statistics Association in St. Petersburg, FL) was really good, and as always, I came away with some new ideas for research. I also got to meet new people and see old friends.

My plane arrived in NC just before noon today, and Randall and I decided to meet for lunch (with the girls) in Dunn. Randall told the girls they were going to lunch, but he didn't tell them I would be there. They were so pleasantly surprised. Sophie spent about 20 minutes in my lap, clinging to me tightly, while we waited for the food to arrive. She got a lot of attention at the Cracker Barrel, and told several people she would be going back to school soon. She said (accurately), "If my counts are low, I can't go to school. If my counts are high, I can go to school. I go to Countryside, and my friends are there, but Ms. Dawn moved away." She seemed a little tired and pale, but she (and I) took a long nap, and she has seemed better since then.

Today's cute story: We were all preparing to take a nap, and Randall was groaning about wanting to take a nap with us instead of finishing up his sermon. Sophie said, "I know how to make you feel better Daddy! Tickling!" He chose the sermon over the nap, so we'll have lots of time tonight to catch up with each other after the girls go to sleep. It's good to be back home with my family.

Posted by Susan at 08:13 PM | Permalink

8:45 PM: We just got home from a "trunk or treat" and scary hayride at the church (Sophie skipped the scary part). We had lots of kids, and the whole thing was just great! What fun. The kids are now crabby and tired, but they had a really good time. Elisabeth dressed up as Scooby, and Sophie was a Care Bear (I think it's Cheer Bear--the one with the rainbow). Elisabeth's costume was plenty big--I think she can wear it for the next two years. Sophie's fit perfectly, and she couldn't have been more adorable. They both got lots of compliments, and the costumes were both plenty warm, so they were comfortable.

We're very curious to hear the results of Sophie's blood test tomorrow. She has seemed pale and tired at times. I think we're definitely ready for her ANC to be high enough to start treatment on Tuesday, but if it's not, we'll enjoy the extended break.

Posted by Susan at 08:46 PM | Permalink

8:00 PM: I am pleased (and somewhat surprised) to announce that Sophie's counts are finally high enough to begin maintenance therapy. From now until May 31, 2007, Sophie will receive multiple 4-week courses of chemotherapy that will involve less-frequent visits to the clinic (for those counting down, that's one year, seven months). The following table summarizes the treatments for each 4-week (84-day) maintenance course:

We'll start tomorrow with a spinal tap (methotrexate) and vincristine and a fistful of prescriptions for the new oral medications. I'm sure you all fondly remember our run with dexamethasone (which is a steroid) during the fourth phase of treatment. Then, she took 21 days in a row, and we were all miserable. I'm pretty sure we started to notice effects within the first 5 days, but we are hoping 5 days will be a lot less disruptive and miserable for us than 21 days.

When she took mercaptopurine during the second phase of treatment, it didn't seem to bother her. The only inconvenient thing (other than the fact that she will be taking this medicine every day for the next year and seven months) is that it cannot be taken with dairy, so we'll have to make sure she avoids dairy for 2 hours before bedtime. We did discover that she doesn't mind chewing up the pill by itself, so we don't have to give it with peanut butter or applesauce or anything.

She's never taken methotrexate by mouth, so we don't know how she'll react to it (either the taste of it or the side effects)--we'll keep you posted.

What we're most excited about is that if her counts are still strong two weeks into treatment, she can start going to daycare. After a ten-month break, we're all ready to have her back. She tells everyone she sees that if her counts are high she can go to school. She's really excited about going back, and we'll start taking her in for visits very soon while we wait to see how she responds to treatment.

Randall and Elisabeth just got home from dance class. He has lots of reading to do tonight--we'll be getting the girls to bed soon so he can get to work. Sophie and I will have a very early morning tomorrow, so I'll try not to stay up too late.

Thanks, as always, for keeping up with us. It seems like we frequently hear from friends and family letting us know they read our updates often and look forward to hearing how we're doing. In fact, I just checked, and the index page for this blog was viewed over 1450 times during the month of October (at least a few of those times was us checking to make sure the entry looked okay or to see comments). That's great encouragement for us, and great prayers and positive thinking for Sophie. We welcome and treasure it!

Posted by Susan at 08:03 PM | Permalink | Comments (1)