Sophie's World

8:50 PM (Randall posting): And we thought yesterday was a long and tiring day! But here we are, and we have made it though today. All of our events for today seemed to go well--church, visit with Sophie's old daycare, wedding, and revival. It was exhausting, though.

Our big letdown of the day was that the Oldsmobile died on Susan as she was leaving for church this morning. Thank God Eileen was here and they all piled into her car and went to church. The absolute last thing we need in our lives right now is an unreliable car. Given how much we have sunk into this car already in the past few months ($2000), it is really getting frustrating. We're hoping it will be something relatively minor and all will be well soon.

Sophie continues to hold up well through everything, even if she gets tired more easily and is visibly pale these last couple of days. She is still her same old self. After revival tonight, someone on the front steps bent over and said "Hi" to Sophie as she was flitting about and Sophie stopped in her tracks and said, "Oh, HI!" like she was genuinely happy to see this person and hadn't seen her in a long time. She is one of a kind!

Posted by Susan at 08:59 PM | Permalink | Comments (2)

9:20 PM: It was a much more relaxed day today. Just to give you an indication of how tired Sophie must have been, she (who usually is up at 6:30) slept in until 9:00 this morning. It may have been our most productive morning at home with Sophie so far. We were both working at home today. One bit of good news--the fellow across the street has just opened a new garage to do car repairs. Someone from our congregation called him early this morning, and he came over to the house (who know mechanics made house calls?). He looked over the car, took the battery back to his place, charged it up, fixed a loose connection, and charged us a grand total of $30. Now that was unexpected. It hasn't lessened Randall's desire to buy a new car though. I'd like to live with no car payments for while longer (although what we've paid in repairs over the last three months has definitely been more than car payments would have been).

Sophie will head back to the clinic tomorrow with Randall. She'll get vincristine (in her IV) and shots in her thighs (aspariginase, or "peg shots" as they tend to call them). Assuming she doesn't need a transfusion (which she may) it may not be a long day. She seems to be bruising a fair amount and is quite pale. We're eager to hear how her counts are doing. She had lots of energy at church tonight and was happy to see our friends.

We may have a budding drummer on our hands. The revival preacher brings his praise band with him each night, and the drums are set up in the sanctuary. After the service tonight, the drummer was showing the kids how to drum, and apparently Sophie was really getting into it. I told him I wanted his phone number so I can call and complain in ten years when Sophie is practicing drums in our house. Elisabeth is really into the revival. She's very disappointed that we're going to miss part of it tomorrow because she has dance class. She also said she's looking forward to the healing service they will do on Wednesday, because she wants them to pray over Sophie. So sweet. I figured her first thought would be that they would pray over her broken finger.

Posted by Susan at 09:21 PM | Permalink | Comments (2)

11:00 AM: Just got a call from Randall, and they are on their way home from the clinic. The results from her blood test were good. Her counts are dropping, but nothing is too low yet. No transfusions today, and her white counts are still good enough to be out in public. Randall said he saw lots of familiar faces at the clinic--other kids we see from week to week. It's nice to reconnect and see how well they are doing.

Posted by Susan at 11:01 AM | Permalink | Comments (3)

9:20 AM (Randall posting): We never got around to posting last night--too busy and too tired after the day. We had a good clinic visit yesterday. Sophie and I got in about 8:00am, and since Sophie did not need sedation, everything was more or less expedited. Dr. Gold commented on how much Sophie has kept her hair. I guess by this time many kids have already lost a great deal of hair. Other than the first month or so when her hair was really falling out, it hasn't been too bad. I don't think the hair loss ever bothered her that much, other than getting hair in her face or in in her mouth all the time, but I guess it is nice that this obvious side effect has not been too bad for Sophie. It also makes her look less sick--given how active she is, unless you look closely and notice how thin her hair is or how pale she looks, she looks healthy.

Sophie's counts are definitely dropping, but her ANC is still above the "worry zone" where we get anxious about infections. We have one more week of treatment in this phase. There is no at-home chemotherapy this week or next and we have only one chemotherapy drug at the clinic next week (vincristine). I'm fairly certain there will be a breather for us after next week while Sophie recovers and before we head into the next phase of her treatment.

Thanks for all your comments and support as we walk through this whole process. I know many of you don't keep up day-to-day but check in when you can. If you are unable to post a comment on previous entries, it is because we tend to keep the comments open only on the most recent posts, otherwise we get SPAM comments on the site. We cannot fully express how much we appreciate all your support--Thank you!

Posted by Susan at 09:38 AM | Permalink

5:15 PM: We've had a pretty good day so far (still lots of activity before bedtime). Randall decided we should try to work on potty training again. (Unfortunately, Sophie was pretty much potty-trained a few weeks before her diagnosis, but all that time confined to a hospital bed made us revert to diapers again, and none of us have been ready until now to work on it). She had a couple of accidents today (one was my fault--got busy working and forgot to prompt her to go) but has used the potty several times. We're using M&M's as an incentive.

I successfully passed the tests to get my NC driver's license today (my NM license expires tomorrow--nothing like procrastination, huh?). I worked hard to study for the written test. Did you know that according to NC law, you're supposed to beep your horn when passing to alert the driver in front of you that you're about to pass? That seems pretty aggressive to me.

Randall worked hard today to prepare for a final exam in one of his classes tomorrow (it's in the afternoon). It will be a relief to have those responsibilities behind him so he can focus on his job (and us!). He's going to take an incomplete in one class (he has to write a 25-page paper), but that won't be too hard to take care of over the summer.

Tonight is the last night of revival. It's been nice to spend so much time with our church family, but it will be nice to no longer rush around every night (of course, I have women's meeting tomorrow night!).

Posted by Susan at 05:25 PM | Permalink | Comments (2)

9:35 PM (Randall posting): We're home from the revival. Sophie and Elisabeth are fighting off sleep. Getting up in the morning is not going to be fun, especially since I'll be up late tonight studying for my final exam. The revival seemed to go very well. As Susan said, it was nice spending that much time with our church family. At the end of the service tonight Tim (the revival preacher) called around the congregation to pray over our family. That meant a great deal to me. I know that people have been praying for us for some time now, but to feel them praying over us was very powerful. I hope I never forget that. It has been a memorable week all around. Now, I've got to get off the computer and get to studying!

Posted by Susan at 09:33 PM | Permalink

5:30 PM (Randall posting): My mom already called once today wondering what was going on since we didn't post yesterday. I guess time got away from us. Susan was meeting with the women's group last night and I had my hands full with two girls (and no energy because of my final exam yesterday). Things are going just fine here. Potty training has been hit-and-miss, but that is the way these things go. We're committed to making this work, so we'll keep at it.

Sophie seems especially clingy and fussy today, although she has bursts of amazing energy every now and then. She slept fitfully during her nap (even moved mid-way to our bed). She says her stomach is bothering her. Her platelets must be getting quite low as well because her poor knees are black and blue. The way I see it we have to hold on for the next few days, until next Tuesday and her final treatment in this phase. What happens beyond that is too far out to contemplate or worry about much.

I made an appointment earlier in the day for Elisabeth's follow-up with the orthopedist. She is still wearing her splint (except when her parents are in a terrible hurry or in a terrible state of forgetfulness) and will need to wear it for at least two more weeks. Hopefully we'll be done with all of that very soon!

Posted by Susan at 05:41 PM | Permalink | Comments (2)

10:30 PM: Hey! It's 10:30 and we haven't posted yet. We're all doing well today, although it's been tough emotionally. The girls have both been very demanding today, and we had lots of little things to take care of. Randall wrote not one but four (!) sermons today (not happy with the first three). I folded four loads of laundry. Now that's symmetry.

We spent some time this afternoon trying to think about when we might be able to go on vacation ths summer. We gave up. It's just too complicated to think about when she might start the next phase of treatment (depending on her counts), and when that one might end and the next one might start. Too many variables to do things like put down a deposit on beach house for a particular week. I think we'll just have to play it by ear and take a vacation that we can do on the spur of the moment.

Potty training went remarkably well today. We had two slightly dampened panties but no soakers (and I didn't have to clean the carpet). This includes a trip to town and a nap. She refused to wear pull-ups or diapers for anything but bedtime today. We're thrilled! Needless to say, one of the items we bought today was M&M's (our incentive).

Posted by Susan at 10:37 PM | Permalink

3:00 PM: Happy Mother's Day! It's been a beautiful day today. The girls have been very well-behaved all day (so far), and the weather is gorgeous. We had breakfast together this morning, and Randall let me open the gifts he bought for me--a necklace and pair of earrings. Yesterday, Elisabeth gave me her gifts--several drawings, a flowering plant (with a pot she decorated), and a card with a flowerpot on the front. Inside the flowerpot are four flowers, and on the inside was written: "Pick a flower and you will see--The jobs you can expect from me. I'll do them all without a bother--because I love you so much mother." There were four flowers in the flowerpot, and Elisabeth had written the following jobs on the stems:

1. I will give medicine in Sophie's tail
2. I will carry her to the bathroom
3. Clean Sophie up
4. Play with her nicely

I like that last one the best! I thought it was interesting that all the items were about Sophie and that she hadn't picked more household chores. It just shows how focused we all are on Sophie lately, I suppose. Sophie has continued to do well today with potty training. She still hasn't woken up from her nap, but she made it through her nap yesterday without an accident, and we have our fingers crossed for today.

Dawn is coming over in about an hour to watch the girls while Randall and I go out to dinner. He mentioned possibly going to Durham to do a little shopping before dinner. It's been a while since we've had a chance to go out on a "date," and we've really been looking forward to it.

Posted by Susan at 03:00 PM | Permalink | Comments (3)

10:00 PM: We had a lovely evening out. I had so much fun and feel so relaxed and refreshed. We did a bit of shopping (mostly looking, but that was fun too) at the mall near where we used to live, had dinner, then drove up near Duke to a dessert place before heading home.

Unfortunately, when we got home we learned that while Dawn was out with the girls for dinner, Sophie got carsick (well, she vomited, and we assume that was the cause), which made Elisabeth gag and throw up as well. It made quite a mess, and Dawn worked very hard to clean things up as well as she could (sorry Dawn!). She tried to let us know by leaving voice mail, but she left the messages on the phone we had left at home. But it all worked out in the end. We'll see how Sophie does overnight, but she seems to be doing fine now that she's home.

Posted by Susan at 10:03 PM | Permalink

7:30 PM: It's been a pretty good day. Sophie and Elisabeth have had no further nausea problems (so it probably was just car-sickness). Sophie and Randall had a good day at home, and Randall got quite a few things accomplished, including preparing a delicious new recipe from one of our cookbooks. Sophie did okay with her potty training until Randall was right in the middle of cooking the sauce (which required close attention), and she chose that moment to poop in her panties--twice in less than 5 minutes (she did it again later a third time too). Luckily, I came home just at that time, so I could help get the rest of dinner pulled together.

Sophie took a bath after dinner, and after that we changed her dressing. It went incredibly well. I had everything laid out, so we were ready to go. We let her sit up instead of making her lay flat, and although she cried when I pulled the old dressing off, she stopped crying fairly quickly. She did great while I was cleaning with the alcohol swabs (three of them). Her lip started to quiver when I did the chloraprep (especially on the places where the tape had held the bottom of the dressing in place), but she held it together. I moved the dressing up a little bit so we wouldn't be putting tape over the irritated spots, and she's been a happy little person ever since. Elisabeth helped with the cap change and pushing in the saline and heparin. Daddy cheered us on and held her hands for me. Everybody did a terrific job! Maybe dressing changes won't be so traumatic from here on out.

Another reason to celebrate: Randall found out that he made A's in two of his classes (he's taking an incomplete in the third and will write a 25-page paper over the summer). That's pretty good considering what we've been through this semester. I'm so proud of him!

Posted by Susan at 07:38 PM | Permalink | Comments (3)

12:00 PM: I'm working at home today, and Randall took Sophie to the clinic this morning. Their appointment wasn't until 11:00, and he called just now to let me know that they are all done for the day. The drew blood and gave her vincristine by IV. They didn't expedite the results on the blood draw, so they'll call us later with the levels. We hope the red blood and platelet counts won't be critical, because that would mean a trip back. But she looks pretty good, so they'll probably be fine.

Today was Sophie's last clinic visit for this second phase of treatment (out of a total of five phases). Next Monday, the home health nurse will draw blood to see if she's ready to begin phase 3 (interim maintenance). We'll be shocked if her levels are high enough (ANC has to be at least .75). We'll be eager to see when she starts, because her treatment is supposed to end exactly two years after she bgeins phase 3. We figure she'll start sometime between 5/17 and 6/7, so that would mean all her treatments will be done by late May or early June 2007. It will be nice to have that fixed goal to look forward to. In the short term, the interim maintenance phase last 48 days and involves visits to the clinic every 10 days (Tuesdays and Fridays). On those days, she'll get vincristine and methotrexate in her IV. The dosage of the methotrexate will increase each week until she reaches toxicity (how that exhibits itself in her case is yet to be seen, and it's not something we're looking forward to!). There are a couple of times she has to go in two days in a row for spinal taps (to inject methotrexate) and peg shots.

My other good news for the day: My boss just called to let me know I've been promoted! It's effective May 1, and the salary increase will help balance out my take-home pay now that I've decided to work part-time under FMLA (also effective May 1). That certainly makes me feel more appreciated at work.

Posted by Susan at 12:15 PM | Permalink | Comments (5)

8:30 PM: We heard back on Sophie's counts today. Everything is looking good. Her red blood and platelet counts are low, but she doesn't need a transfusion. Her ANC is .8, which is low but not critical. It's hard to tell whether this is as low as it's going to get and she'll start to go back up now, or whether it will drop to critical this week. When the nurse comes on Monday, we'll know more about which direction it has headed. Until then, we'll need to be somewhat cautious about her activities, but we won't have to completely isolate her. It's exciting to think that at this point, it is possible that she could start the next phase of treatment without a break.

Posted by Susan at 08:28 PM | Permalink | Comments (1)

8:48 PM (Randall posting): The girls are in bed and the house is quiet (for now). Susan is reading something for work while listening to a CD in the living room and I am sitting in front of the monitor with the lights off. Our major excitement for the day was that at 6:30 this morning, the roofers came to start putting new shingles on the parsonage. Believe it or not, I had to wake both girls up to get Elisabeth out the door to school. Sophie and I escaped some of the noise this morning by going outside and potting/repotting some plants under the carport.

[brief interruption to tend to both girls, who are not yet falling asleep]

Anyway, Sophie and I piddled with the plants, which she enjoyed, even if she was more interested in blowing bubbles, playing with sidewalk chalk, or rolling around Elisabeth's roller skates (all of which are outside under the carport). After all our gardening, we went out to lunch. I figure the less banging and stomping we hear, the better. After lunch Sophie took a nap (!) and I finally got some down time for reading and sermon preparation. Not an easy feat with the roofers overhead. Then, at 2:30pm, all the pounding stopped and they left for the day. They made quite a bit of progress, though, so hopefully tomorrow will see the end of it.

Posted by Susan at 09:03 PM | Permalink | Comments (1)

8:45 PM (Randall posting): There isn't much news to report today. Susan went to work, Sophie and I stayed home, Elisabeth went to school. Sophie spent some time this morning with Ruth Altman, Sophie's adopted "Nannie" (one of many--hard to believe this is the same child who would scream bloody murder when she saw an older person). We had a Mother's Dinner tonight at church, so Sophie got to socialize, which made her happy (and a little wired. Did I mention she is still awake?). She is not lacking for energy at all, although someone noticed that her eyebrows seem to be falling out some (at least it is easy to notice that there isn't as much hair there as you would expect). Given how energetic she has been plus the fact that her bruising seems to be improving, we're optimistic that the next phase of chemotherapy will start as early as Tuesday. As always, we will keep everyone posted on any new developments.

Posted by Susan at 08:45 PM | Permalink | Comments (3)

8:30 PM (Randall posting): Friday at last! I'll even take Friday the 13th! This has been my first week post-semester and it has not been very productive, other than taking care of little odds and ends and spending more quality time with my girls. Sophie and I went to Fayetteville today so I could meet with the District Superintendent. Sophie entertained the Administrative Assistant (thoroughly) while I had my meeting. They blew bubbles and Sophie chattered away the whole time (I heard her).

This is one of those situations where Sophie's outgoing nature is a wonderful thing. She had never met these people before (or only met them briefly) and yet she was perfectly comfortable visiting with them for 30 minutes or so while I was in the other room. The weather cooled off some today, so there was not much outside time.

After nap we went to pick Elisabeth up at school, where I discovered that Elisabeth had taken something to school (money) that I told her not to. Elisabeth knew right away that she was in serious trouble, which she was, and I told her as much, but she cried and cried and cried. Sophie always gets very, very upset when Elisabeth is upset. Sometimes Sophie even gives Susan or me a very stern talking to when we're lecturing Elisabeth about something or other and today was no different. Anyway, let's just say that I hope Elisabeth learned a valuable lesson about honesty today. I'm sure Sophie will need to learn that lesson some day as well.

I don't know if all the high drama was too much for Sophie, but she's been pretty cranky all night. Maybe she's just tired and worn out. She seems to be doing great, but I suppose we don't always know what she's feeling. We'll find out Monday how her counts are looking.

Posted by Susan at 08:23 PM | Permalink | Comments (1)

8:40 PM: I'ts been a very good Saturday. We had invitations to three different conflicting events, and rather than choosing, we decided to have a family-focused day. We had a lovely lazy morning, and after nap/quiet rest (and a little work), we drove to Fayetteville for dinner and grocery shopping. Randall had already finished his sermon on Friday (quite a gift to us), so we really didn't have a lot of obligations today. Even though the stress level was low, Randall still had a migraine, and Sophie was quick to over-react most of the day. The girls will be heading to bed soon, and we're looking forward to another quiet evening at home, talking and enjoying each other's company.

Posted by Susan at 08:45 PM | Permalink

9:45 PM (Randall posting): It's a quiet end to a good weekend. We all got plenty of rest and didn't do a whole lot and spent a lot of time together as a family. Today was pretty routine--church, Sunday School, lunch, quiet rest, Bible Study, date night. If anyone ever wants to know what we're doing on any given Sunday, that's a good guide. It varies some times, but usually that's it.

After lunch Elisabeth was throwing around some attitude about wanting to play outside and we kept insisting that it was time for quiet rest. After an hour or so, I took Elisabeth with me to buy a newspaper and we hung out outside until the wind drove us in. She confessed to me that she actually had a good time in her room during quiet rest and she was sorry to have made such a fuss about it. Sometimes her maturity comes out of nowhere and takes you by suprise. Someone suggested that we are already nearing the age of teenagerhood, which is pretty scary, but I think I can see it sometimes. May God have mercy on us all!

Sophie's been her enthusiastic and energetic self today. This morning at church the children's sermon was on spiritual gifts and how we have all been given gifts by the Spirit. I said I thought Sophie's gift was the gift of joy. She is just so generous and so joyful that it's infectious.

We're somewhat anxious to hear about Sophie's blood count tomorrow. If her counts are up, it will mean a trip to the clinic on Tuesday for three types of chemo (two through the IV and one through a spinal tap) and another trip on Wednesday for yet another treatment (a Peg shot in both legs). Of course, if her counts are too low, we may be going in for a transfusion. Needless to say, not knowing where we stand less than 48 hours from now is not easy. Whatever happens, God willing, I'm sure we'll get through the day and move on to the next day when that time comes.

Posted by Susan at 09:59 PM | Permalink | Comments (3)

9:45 PM (Randall posting): It has been a crazy, exhausting day that we just won't get into much detail about, simply because it has been a crazy, exhausting day. The home health nurse came on schedule (we like her!) this morning to do Sophie's blood work and dressing change. It didn't go quite as well as last week's but was much better than it had been in the weeks before. The new dressing seems to be working out really well. Her chest isn't nearly as irritated as it had been getting, and she recovered quickly from being upset. She even showed Amy some dance moves.

Sophie's bloodwork came back this afternoon, and her counts are too low to begin chemotherapy this week. In fact, everything but her platelets are as low as they have been since February. Because her platelets tend to run ahead of everything else (or at least it seems that way), she may be on the upswing. At least we're hoping that is the case.

Given that this round of chemo starts with two days back-to-back, we are not disappointed that we have to wait another week. Susan is having a busy week at work and I'm not feeling well right now. Elisabeth has her follow-up appointment on Wednesday to tend to her finger, and we were not quite sure how we would manage everything if we did need to go to Chapel Hill on Tuesday and Wednesday of this week.

Posted by Susan at 09:43 PM | Permalink | Comments (2)

9:50: (Susan posting) Well, I just got home from work, so that should tell you what kind of day I had. Big meetings at work and lots of work to do. I'll be heading out again at the crack of dawn to beat the traffic. From what I hear, it sounds like Randall had a very good day with Sophie. The big news is that we have dismantled Sophie's toddler bed. She had been sleeping almost exclusively in the "big bed" (a double bed in her room), and it was just a place to put stuffed animals for the most part. The room seems so much bigger without that large piece of furniture in there, and Sophie (who was still wide awake when I got home) seems very excited.

We never got a call from the doctor today, so we're apparently not going in for a transfusion tomorrow. Sophie seemed to feel well today, although Randall said she did have a slight fever (99.3) at one point. We'll keep an eye on that.

Posted by Susan at 09:55 PM | Permalink | Comments (1)

10:00 AM (Randall posting): Just a quick post to let folks know that Elisabeth is officially splint-free! There was nothing on the x-rays to suggest a break, so in spite of forgetting to splint her every now and then (bad parent), she is fully healed. She is very excited. Sophie stayed with Ruth Altman (Nannie) again this morning and they both had a terrific time. We are so grateful to be a part of this caring community. We're learning a lot about needing and asking for help from other people in this situation.

Sophie has not had any more of a fever this morning, so that is good news. As far as potty-training is going, it is going very, very well. She still wears a diaper at night, and they are still wet nearly every morning, so we'll work on that next, but she slept through a looooong nap yesterday with only the slightest "accident" at the end of it (and she went straight to the potty when she woke up).

Posted by Susan at 10:00 AM | Permalink | Comments (3)

10:30 PM (Randall posting): It's late! We just realized we haven't posted yet today. It's been a good day. Sophie was really, really tired today. She started lounging around not long after breakfast. In fact, we were starting to get worried about her, thinking maybe her counts were getting so low we needed to check in with UNC. She had a slight temperature again (99.6) as well. But, before long, her energy levels were back where we normally see them and she was dragging toys all through the house. No more temperature for the rest of the day, either.

Elisabeth had a short day at school today. Susan and Sophie picked her up at school while I went to a doctor's appointment and running errands. The girls all took naps and had quiet rest while I was out and about, and dinner was almost ready by the time I got home. Tomorrow will be another day of running around, as there is an awards ceremony tomorrow morning at Elisabeth's school and we have a meeting with the gifted program teacher immediately afterwards. Elisabeth is expecting to make Principal's List again this term, which is great news. I can't believe that tomorrow is the last day of school for her. She will no longer be a first grader after tomorrow. Seems like just yesterday that we watched her get on the bus for the first time in August!

Sophie's latest trick is that she is making up words and languages. She was insisting this morning that I should not touch her blanket because it was "imbustible" (whatever that means). She then described it with another word that I'm certain is impossible to spell. It sort of reminds me of when Elisabeth named one of her stuffed animals "Shiganing" (basically impossible to spell, but you can get it phonetically).

The clinic checked in today to say they are implementing a new, staggered method of getting through all of the sedations (bone marrow aspirations, spinal taps) that they perform on Tuesday. Usually it is more or less first come, first served, which means it can be "zooish" as Dr. Gold says. I guess they're trying to hold more to a schedule so that everyone is not milling about all at once first thing in the morning (not good when so many of the kids have suppressed immune systems). They wanted to schedule Sophie at 8am, but Susan said that she would be surprised if we needed to go to the clinic for sedation on Tuesday (thinking Sophie's counts would still be too low) but also that 8am is a really hard time for us to shoot for given the drive and traffic. We can get there at 7:30 or 7:45, but trying to get there at 8:00 means we'll hit traffic. The upshot of all of this is that we have been rescheduled for 7:30am, and we'll wait to see if we need to be there or not.

Posted by Susan at 10:46 PM | Permalink | Comments (1)

10:00 PM (Randall posting): Susan and Elisabeth are off to Raleigh to see Swan Lake at the BTI Center. Elisabeth is pretty excited about seeing a ballet. Sophie is in bed and has been there for a couple of hours.

It's been a good day. Today was Elisabeth's last day of school. There was an awards ceremony (Susan went, I stayed at home with Sophie), and Elisabeth got all kinds of awards (sounds like lots of kids got lots of awards--normally the awards assembly lasts under an hour, this one went for more than 1 1/2 hours). She also got to ride the schoolbus home, which was also very exciting.

Sophie has seemed to have more energy today than in the past few days. Her color seems to be improving as well, so maybe her counts are perking up more quickly than they did the last time we took a break from the chemotherapy. On top of that, her appetite has also picked up quite a bit today. She's been eating a lot of Go-gurt (Scooby Doo Go-gurt, of course), but she's also taken an interest in mandarin oranges. Given how averse she has been to otherwise healthy food (yogurt is healthy, right?), it's been quite a turn for her to want to eat yogurt and fruit (even if it is just canned oranges).

Posted by Susan at 10:09 PM | Permalink

2:00 PM (Susan posting): Happy Birthday to Sophie! Sophie is having a good third birthday. Her counts are too low for a party, but she had a good time opening presents from us and our family this morning. We bought a little cake for her to eat later tonight. Ms. Dawn gave us the really good idea to get her a My First LeapPad, so Oma got her one, and several people gave her some books to go with it. We also got her a playdough activity table. That has been a big hit (and a big mess). She and Elisabeth both got some nice clothes too. There were books from Oma and Grammy, and she also got the makeup she had been asking for. Don't try to help her put it on though--she wants to do it all by herself, thank you very much!

Randall and Elisabeth are at church for a kids' activity day (and a celebration of the end of school--though I'm not sure I feel like celebrating the fact that we'll now have two girls at home all day). It's too bad Sophie can't be there too, but she's having a good nap, and she doesn't know what she's missing. Maybe we'll watch one of the DVDs she got for her birthday. I'm looking forward to seeing The Incredibles.

Swan Lake was great last night. Elisabeth was such a grown up little lady. We got there very early, so we had nearly an hour to wait, but we passed the time talking and reading the program. She really enjoyed the first half, but she was very tired for the second half and fell asleep at 10:05. There was only another half hour after that, but it was the most exciting, interesting part (the struggle between the sorceror and the prince and swan princess in the lake-very neat effects for the rough waters), so I was sorry she missed it. We got home at about 11:30 (she slept the whole way), and I put her straight to bed. She didn't sleep in a bit and was up at 7:30. I'm sure after playing hard this afternoon, she's going to be totally wiped out tonight.

Posted by Susan at 02:12 PM | Permalink

9:30 AM (Susan posting): Randall and Elisabeth just left for church. Sophie and I will stay home so she doesn't get exposed to anything. I hate to miss hearing Randall preach. We were also saying this morning that the timing of her blood test doesn't work well for us sometimes. Since Sunday is the peak of our week, there are times when her counts drop quickly, and we take her to church when we shouldn't have (like last Sunday, when the previous Monday, she was at .6 but the day after we took her to church, she was at .1). Other times (like today), we keep her home because her counts had been low on Monday, but for all we know, they are back up (but we won't find out until tomorrow). We try to err on the side of caution, and given the size of the church (average attendance of 45), there are probably worse things we could be exposing her to.

Last night after bath, I cut Elisabeth's hair another inch, and it looks pretty cute. We had a good night (although the girls took their sweet time falling asleep). We had to drag Elisabeth out of bed this morning at 8:45. I guess she was finally catching up on her sleep from staying up late on Friday. Sophie's appetite continues to grow. She ate five go-gurts this morning!

We continue to keep my grandmother, Estelle, and my mom, Mary, in our thoughts and prayers. Nannie is having multiple health problems, and mom is taking leave from work to take care of her full-time. They are both struggling, and we wish there was more we could do to support them directly, but we're stuck here and they're stuck there.

Posted by Susan at 09:28 AM | Permalink | Comments (2)

3:00 PM (Susan posting): Amy (the home health care nurse) came this morning to draw blood and help us with the dressing change (which caused some tears, as usual). The clinic just called to say that although Sophie's counts are moving up, her ANC is still too low to proceed with treatment tomorrow. Her red blood cells and platelets are doing really well, but her ANC is .3 (last week it was .1, and it needs to be .75 to start the next phase). We'll enjoy this extended break from treatment. It gives us a good excuse to shelter ourselves from the world and enjoy each other's company.

We've had a good day so far. I'm trying to work at home while Randall handles both girls and takes care of things around the house. He got lots accomplished this morning, and the girls pretty much entertained themselves (and there was only a minimum of TV). Randall and Elisabeth are out running errands while Sophie naps. We had hoped Sophie's counts would be high enough to celebrate by going out for dinner, but we'll be staying at home and eating leftovers instead. Luckily, we'll be enjoying a new casserole I tried out yesterday, so I don't mind having it again.

Posted by Susan at 03:13 PM | Permalink

6:30 PM (Susan posting): Lately at the dinner table, we've been telling knock-knock jokes. Elisabeth has gotten pretty good at it, but Sophie doesn't quite get it. Every time it's Sophie's turn, she tells the exactly the same joke:

Sophie: Knock knock
Us: Who's there?
Sophie: Frank
Us: Frank who?

[Note here that we would normally expect some variant of "Frank goodness you opened the door!"]

Sophie: Frank whenever you knock, when you open the door, you say "Aaahhhh!"

From the minds of three-year-olds....

Posted by Susan at 06:32 PM | Permalink

7:30 PM (Susan posting): We've had a pretty good day. The girls watched a little more TV than we normally like them to, but they also enjoyed playing outside. Elisabeth has also been learning how to do laundry and has been helping with chores around the house. Randall and Elisabeth ran errands again during Sophie's 3-hour nap. Unfortunately, her nap ended with lots of fussing, which was shortly followed by an accident in her sister's bed. Very frustrating.

Her appetite has been huge, and she generally only wants to eat lots of one thing at any particular meal. She ate 7 go-gurts this morning for breakfast, and at dinner tonight, she ate lots of sliced turkey (and a few apples). For dessert, while the rest of us enjoyed some of Sophie's birthday cake, Sophie insisted on having (can you guess?) a go-gurt.

Posted by Susan at 07:38 PM | Permalink | Comments (1)

9:05 PM (Randall posting): It has been something of a trying day. Susan left early this morning for work and I woke up with a migraine. The girls slept in a little bit (Elisabeth more than Sophie), and for a good part of the morning neither one was terribly demanding. Sophie seems to have tapered off the Go-gurt today, which is probably a good thing. Our food of choice today would have to be a tie between Scooby Doo macaroni and cheese (not bad) and tortilla chips. There has been a lot of TV today, a lot of running and screaming up and down the hallway, and a lot of bickering between the two girls. Did I mention I had a migraine?

On the bright side, Sophie's potty training seems to be going very well once again. We had quite a setback the last couple of days. Today, Sophie was able to actually make it to the potty in the nick of time more than once. She always insists when we ask, "Do you need to go potty?" that no, she does not need to go potty. Of course, thirty seconds later she goes running to the bathroom.

My plan for tomorrow is much less TV, and (weather permitting) more time outside to enjoy the season.

Posted by Susan at 09:20 PM | Permalink | Comments (2)

10:45 PM (Susan posting): Where yesterday was trying, today was tiring. Randall is feeling much better and had a good day with the girls. The way I hear it, they did all kinds of fun things. I worked 11 hours today (and commuted for over 2 and a half hours), so needless to say, I'm exhausted. I did get to take a nice walk down the dirt path with Randall and the girls after dinner, and that was the highlight of my day. Tomorrow I'll be home, trying to do as little work as possible so Randall can have some much-needed time to prepare sermons for the next two weeks (he'll be on the road next week with Elisabeth).

Posted by Susan at 10:49 PM | Permalink | Comments (1)

9:30 PM (Susan posting): Today was a better day. I did a little bit of work (mostly putting out fires), and Randall was able to make some progress on his sermons. Sophie and I went for a walk this morning while Elisabeth and Randall played in the building (he cleaned it out earlier this week and made a play area). After lunch, Elisabeth and I did our weekly grocery shopping at Walmart (that's not where we usually go, but we needed something they don't carry at the grocery store). It was a LONG shopping trip, and I was totally exhausted by the time we got home. The extra time I've been spending at work lately is starting to catch up with me. Speaking of work, I found out this morning that a close colleague (and friend) of mine at work was admitted to the hospital with a pulmonary embolism (blood clot in the lung), following surgery he had a few weeks ago for a torn achilles tendon. I've been worried about him all day and am keeping him and his family (wife and 8-year-old son) in my thoughts.

I mentioned yesterday that Randall and Elisabeth will be traveling next week. They are flying to New Mexico so Randall can attend the New Mexico Annual Conference (it's a regional meeting of the United Methodist Church). They will be gone Tuesday through Monday. Elisabeth will stay with our friends Barbara and Jeremy while Randall is at the conference. Barbara and Jeremy have two kids who are very close in age to Elisabeth and Sophie. Jacquelyn and Elisabeth were very good friends, so they are both very excited to be able to spend so much time together. On Sunday, Randall will preach at First UMC in downtown Albuquerque, where we were members when we lived there.

We had a nice visit this evening with our good friend Jean from Boulder and her sister. They were visiting family and stopped by to see us. We had dinner together and got caught up on all our mutual friends. Our house was pretty far out of their way, so we certainly did appreciate the effort they took to come see us. Sophie took to both of them immediately. Every time she said something to them, she would begin with "Hey, friends!" Food of the day is still Go-gurt (9 tubes).

Posted by Susan at 09:28 PM | Permalink

8:15 PM (Susan posting): We had a nice day today. It was a lazy morning of hanging out, playing, and watching TV. We ran a few errands around lunchtime, and then came home for a nap. Because the nap got a late start, it was after 5:00 when Sophie woke up. After dinner, we played out out in the yard and spent some time in the building play room. Randall set up a radio/CD player in there, so we were listening to classical music. We all really enjoyed ourselves. The girls are taking a bath, and we're hoping they'll go to bed easily so we can enjoy some child-free time together, but with that late nap, they'll probably be up late.

Randall was able to finish his sermon for tomorrow during Sophie's nap and will practice it after the girls go to sleep. He'll have Monday to finish working on the sermon for the following week. He and Elisabeth leave pretty early on Tuesday morning. We'll find out on Monday whether Sophie and I will have an early morning at the clinic on Tuesday. We're assuming her counts will be high enough on Monday.

Posted by Susan at 08:18 PM | Permalink

4:45 PM (Susan posting): It's been a fairly good day. We spent too much time sleeping in and were nearly late to church this morning. I know that was stressful for Randall. Sophie made it through the whole service without having to go to the nursery. I think she was happy to be back at church, and everyone seemed happy to see her. We've been trying to relax a bit this afternoon, napping and taking care of little tasks around the house. In about an hour, Dawn will come to watch the girls while we go to Bible study and then out to dinner. We really look forward to our weekly dates. We're very curious to hear about Sophie's blood levels tomorrow.

Posted by Susan at 04:51 PM | Permalink | Comments (1)

This phase of treatment, which involves visits every 10 days or so, lasts about 48 days, then she'll take a break for her counts to recover. The fourth phase involves eight different chemotherapies administered at different intervals, including 21 days of steroids--yikes!. The last maintenance phase will involve monthly clinic visits, and it will end two years following the start of phase 3, so we're looking forward to being done on May 31, 2007!

Here's a breakdown of the medication schedule for phase 3:

Posted by Susan at 03:28 PM | Permalink | Comments (1)

9:45 PM (Randall posting): In the movie "Parenthood" (with Steve Martin), the main character eventually compares family life with riding a roller coaster--scary as you-know-what some times, but thrilling and worth the ride when all is said and done. With that mental image before us, our family's little roller coaster is clicking up a long, long hill tonight. Elisabeth and I are packed to head to Albuquerque early in the morning, Susan and Sophie are packed to head to Chapel Hill early in the morning. We're hoping that sometime near 6:00am tomorrow, we'll all be heading up the interstate to our respective destinations (airport and clinic).

Over the past two weeks as Sophie's treatments have been on hold and my schoolwork has been finished (except for that nagging incomplete), our life has been pretty stable, although Susan's job has been unusually demanding. Perfect timing, I suppose. Now that Sophie's protocol is resuming, everything seems to be shifting in gear once again. Although there is relief that the waiting is over, there is anxiety over all the drugs and possible side effects, and how this will impact our lives, especially with half our family halfway across the country this week. Fortunately, Sophie has responded well to the treatments thus far, and she is not getting new drugs in this phase of treatment.

The reality is, though, that Sophie is the center of our family's life right now, and what she needs determines everything else. In some ways, there is a comfort in that. We know we're doing all the right things for her so that she can get well. We know that our lives, our jobs, our schoolwork can suddenly become less important (and what a lesson that is!). And, we know that the odds are really, really good that we will look back on these 2 1/2 years and see them differently than we see them now, forgetting the anxiety, the upset, and the not-knowing, and simply remembering fondly the ride.

Posted by Susan at 09:58 PM | Permalink | Comments (2)

4:00 PM (Susan posting): We're back from the clinic trip (with a few stops on the way home). It was a pretty uneventful visit. We left just after 6:00, got checked in 7:30, and we were already 7th in line for surgery. They put her on fluids (since she had blood sugar problems once before when she was down the list). They took her in for sedation at about 8:45, and it took her a long time to wake up. Once she did, we were ready to begin the other two chemo medicines, but unfortunately, her anti-nausea medicine (Zofran) she needed to take first hadn't yet been ordered, so we had to wait about an hour for it to arrive. She ate a few snacks while we waited, but she was very hungry for lunch by noon. There was pizza (I don't know who pays for that, but God bless them!), and she ate 5 pieces (well, she ate the sausage off of 5 pieces, ate about 1 slice of the rest of the pizza, and I helped her finish off some of the rest of the stripped pizza.

On the way home, I stopeed by work to drop off some paperwork that was due today, and she watched videos until we got to Dunn. We stopped by the store to pick up a few groceries, and she is now watching TV. No nap so far, and her energy level is quite high. At this point, we might as well skip the nap, because if she falls asleep now, she'll wake up around bedtime (and then I'll be miserable!). I'll shoot for dinner, a quick walk, and an early bedtime. I'll probably give her some zofran before bed just to be safe. She has a tendency to vomit during the night after her first chemo visit after a break.

Randall called a couple of times during their layover. I haven't heard from him since they arrived in Albuquerque, but everything was going well earlier. I can't believe they're gone! It's going to be so different around here without them.

Posted by Susan at 04:01 PM | Permalink | Comments (2)

7:10 PM (Susan posting): Randall has called a couple of times since landing. Elisabeth and Jacquelyn are happily playing together. Elisabeth told Randall to tell me that she misses me, but she's not sad. I know just how she feels. Sophie is in bed but is not yet being cooperative about falling asleep. I don't think it will take long. She seems really wiped out all of a sudden. It's been quite a day.

p.s. By 7:15, she was fast asleep and slept soundly until about 10:00, when she called for me about 6 times over the next hour. After she went back to sleep around 11:00, she was quiet for the rest of the night (or at least too quiet for me to hear).

Posted by Susan at 07:14 PM | Permalink