Sophie's World

10:40 PM I wish that I could write that Sophie is starting to get back to normal after coming off the steroids, but that is not the case. Maybe she is a little less irritable. Maybe she is a little less obsessive about food. Maybe she is a little more comfortable spending more than 30 seconds on anything. Maybe, maybe, maybe. In other words, it's hard to tell. I've had more of the same from Sophie today (eating, napping, etc.). Reading books has become a new joy for all of us. I always try and find a book we haven't read in a while or one that I think will be particularly fun. Today I read her a book that had buttons you could push to make sound effects that went along with the words. Sophie thought that was fun.

Sophie was definitely demanding (at times) today, and I was not as patient with her as I normally am. I did discover that when you're in the middle of working and she asks for something to eat, you can hold her off by setting the timer for 15 minutes and letting her know that when the timer goes off, you'll be able to do something for her. She seems to understand that I can't drop everything all the time to get her potato chips (for example).

If we're seeing any small changes or improvements, I hope we continue to see them and more tomorrow.

Posted by Randall at 10:40 PM | Permalink | Comments (2)

9:30 PM: What a day! And for Randall it's not even over yet. Elisabeth caught the bus this morning, and Randall left for his first class of the semester shortly after that. I decided that I would take advantage of my part-time status and take the day off of work. It started out as a pretty slow morning, and I even joined Sophie in her morning nap. For the rest of the day though, even if I wasn't doing RTI work, I was doing lots of house work. I got tons of cooking and cleaning done (even if the majority of the cooking was for Sophie). I was frequently interrupted, so my work wasn't terribly efficient, but it sure was satisfying.

Tuesday is Randall's long day. He has three classes plus worship, and he's usually done at 6:30 and would normally be home by now. He's meeting with some people in the congregation tonight, so he's not home yet, but he should be soon. Tomorrow, he'll be finishing off his paper. I've had to be careful getting on the computer today, because it is surrounded by multiple piles of books and articles. I don't envy him at all. I talked to him a couple of times today. He sounded so energized by being back on campus. Being home with the girls all summer was hard for him. We all crave stimulating adult company and being home with kids all day is isolating.

Today was Sophie's first day off steroids. I honestly can't see much difference yet. Just walking around exhausts her. I don't know how much she weighs right now, but it's got to be hard for her to move around and manage her own body. She was really sweet and patient today. She was often willing to wait to read a book until I had finished whatever I was working on. As long as I explained what I was doing and promised I would attend to her, she would wait. One fun development we've discovered in the last day or two is that she's starting to memorize her books. With some of the books we read over and over to her, if we read the first word in the sentence, she can finish the sentence. It's pretty neat! And I lavish her with praise when she does it, so she's really proud of herself.

Randall's home, so I'll sign off for tonight!

Posted by Susan at 09:42 PM | Permalink | Comments (2)

8:30 PM: Sophie is asleep, Susan is picking up Elisabeth from dance class (I expect them any second), and I'm avoiding finishing up my term paper from last semester. The deadline to get it in is Thursday, so I'm slowly working up to panic mode, which will probably get me motivated since nothing else seems to at the moment.

Susan was at work today, so I was at home alone with the Sophster. Today was a pretty good day, although words cannot describe how thankful we are that tonight's dose of dexamethasone will be Sophie's last for this phase of chemotherapy. Sophie is so physically uncomfortable and without joy or vitality that it has become really, really hard to be around her.

She is still our Sophie, but she has become something/somebody different entirely. Her weight gain has so radically changed her appearance that it's almost like it's not the same girl. The elastic on the nightgown that she wore to bed last night was cutting into her arms today, so I put her in a dress. A size 5. She has trouble getting around (maneuvers up the back steps like a very little old lady--if she makes it up the steps at all). She rarely smiles, and when she does, it almost looks like it causes her pain to do so. She has little to no interest in just about anything, and whatever interests her does not hold her interest for long (books, TV, I would add toys but she hasn't played with anything for days).

The sole consolation through this phase of treatment has been that it was temporary and one-time-only. I am really thankful that we did not understand or appreciate how difficult this round would be, because it would have been hard to start it.

But tomorrow is a new day, and it will be a day without steroids. Sophie will continue taking an anti-fungal and Nexium (for reflux caused by the steroid) for another two mornings. Thursday morning, she takes no medicine at all. I'm hoping that over the course of this week, her appetite will return to normal, she will lose some of the weight she has gained, she will start sleeping through the night, she will not fly off the handle over the tiniest little things, she will smile and laugh and giggle and play, she will be able (and will want) to dance and run, in short, I look forward to having my little girl back. I imagine she will be glad to be back as well!

Posted by Randall at 08:24 PM | Permalink | Comments (5)

10:00 PM: One more day of steroids, and not a minute too soon. Sophie is so clearly uncomfortable (we think she's starting to get stretch marks--poor thing!). She was up several times during the night, as usual, and I tried to get up with her most of the time so Randall could be as well-rested as possible for the service this morning. One thing that's not so bad about getting up in the middle of the night is that I can read a book while Sophie is shoveling the food in. She's too busy eating for any sort of meaningful conversation anyhow, so I figure it's okay to bend our rule about not reading at the table when the kids are there.

I knew the last two times we tried to take her to church, it really wiped her out, so I arranged a sitter. It was a good sermon today, so I'm glad I didn't have to miss it. I came home right after the service and didn't stay for Sunday school (so the sitter could go to church too).

[I can't even write this update without getting interrupted for a snack (pizza, orange juice, and medicine)].

We had a nice lunch at home, and I took a fairly long nap (Sophie slept during part of it). We realized this afternoon that her dressing was starting to peel up around the edges (it's not due to be changed until tomorrow), probably due to all the sweating she does while she sleeps. So we decided to change it a day early. She didn't get the least bit upset, and it went really well. I never would have thought a few months ago that the dressing change could ever be a pleasant experience. Having her pull it off herself has made all the difference. After the dressing change, Sophie insisted she wanted to go out to lunch, but it was already 4:00. So I decided to take her down to the Grocery Barn and get her a slice of pizza. She was very excited about our "date" but was ready to come home after eating just a few bites. She gets tired so easily.

Our sitter came back again tonight so Randall could go to a meeting at church and I could take care of some grocery shopping. Then Randall and I went out for a quick dinner together. Sophie cried a lot both times we left her today. It's hard to see her so miserable and clingy. We are really looking forward to having her back to normal (or at least to how things were before steroids).

Posted by Susan at 09:58 PM | Permalink

9:00 PM: It's hard to believe that it is already evening. I guess that is an indicator of how busy today has been. Susan had a Women's Breakfast at church this morning, so I was home alone with the girls for quite some time. Fortunately, Elisabeth watched TV most of the time (we have now returned to our no-TV-during-the-week rule since school started and I think she was suffering from withdrawal). Sophie took a long, long nap this morning. All of that meant that I wrapped up my sermon before lunch, which is always a satisfying feeling. Of course, I have my research paper to work on (still), so I went to work on that this afternoon.

Susan has been able to corral the girls (for the most part) to allow me to get a fair amount of work done. This afternoon, Elisabeth was invited to a back-to-school party at another church, and she had a blast. Sophie went for a while, too, but Susan brought her home early so Sophie could nap and eat.

That's pretty much been our day today. More of the same for Sophie: eat, nap, eat, nap, eat, nap, repeat. This evening she was complaining about her feet hurting, which is the first time in this whole steroid treatment that anything seemed to bother her in terms of pain. For much of the day today, Sophie has also been running a pretty low fever (it's never been above 99.9, so I don't know if technically that is a fever, but it's not been 98.6 all day). If the fever gets above 101, it becomes a problem. We'll keep our eyes out for that over the next couple of days. Her counts may be dropping soon (if they haven't already), so we'll need to become more vigilant about germs and the like.

Last night Susan and I went to bed around 9:30PM, and that seemed to help some with dealing with all our nocturnal goings-on. Unfortunately, Sophie was pretty demanding last night, so Susan was up for long stretches of time tending to her. I imagine we'll be going to bed before too long yet again. Hopefully, a week from now we'll all be sleeping through the night. What a concept!

Our excitement for the evening was that Susan saw a baby snake under the carport. We all went out to take a closer look at it and it got quite perturbed by me in particular (I guess I got too close to it), and it coiled up and shook its tail like a rattlesnake. Although I wasn't too concerned about it, I made sure that it got "relocated" somewhere else besides right up against the house.

Posted by Randall at 09:05 PM | Permalink

8:30 PM: Today has been a very challenging day. It started last night when Sophie woke up hungry just as Susan and I were falling asleep. I got up to tend to Sophie and for the next two hours Sophie and Elisabeth needed something or other. Sophie ate twice before 2:00AM, Elisabeth woke up with a nightmare twice and once with foot cramps (growing pains). So, I got just over 4 hours of sleep last night.

Sophie seems to be especially uncomfortable today (or maybe it's just because today is the first day that I've had her all to myself and I am pretty sleep deprived). Sophie's eating and napping routine seems to be becoming more manic, if that makes any sense. She lays down to nap but gets up five minutes later, or needs me to read a book, or lay down with her, or she decides that she really wants to eat instead. The same thing holds true for her appetite. She wants something to eat, but nibbles at it and pretty quickly asks for something else.

I have spent the better portion of the day chasing after her, making her a snack, putting the half-eaten snack away, getting out another snack, carrying her back to bed, cleaning up the snack, getting her back at the table, making yet another snack. Can you tell I'm frazzled? As soon as the girls get in bed, I may have to go to bed myself. That may be the only way I have enough energy to make it through the next week (although Sophie has three--count them, THREE--more days of steroids, it will take several days for the effects to wear off).

Elisabeth is on cloud nine with school. Everything is great. The teacher is great, the class is great, her friends are great, her principal is great. And, I will point out, there was no pig truck this morning!!! Now that is something to celebrate and be happy about.

We're all hanging in there (I may be in the worst of shape today, so don't think we're all reeling quite as much as I am). But sometimes, hanging in there is all you can do.

I made the startling realization today that although the six pounds that Sophie has gained doesn't really sound like a whole lot--I gain at least six pounds on Thanksgiving--it is a significant percentage of her total body weight, like somewhere between 20-25% of her weight before steroids. Imagine if your weight increased 20-25% over the course of two weeks. Now I think I can appreciate why she is just so physically uncomfortable.

Posted by Randall at 08:35 PM | Permalink

9:45 PM: It was a pretty good day today. Elisabeth rode the bus to school (it's a good sign that she didn't miss the bus on the first day of school). She was very excited, although we were both annoyed that a pig truck drove by while we waited for the bus to come (I don't know if you've ever been near a pig truck, but pigs stink, and that many pigs stink even more). Last year, it seemed like a pig truck drove by every morning while we waited for a bus, and I guess this year will bring more of the same!

Sophie had a pretty good night. She was up around midnight I think (Randall was up with her, so I'm not sure what time it was). Then I was up with her at 2:00 and 3:00. She was up again at 6:45, when we all needed to get up anyhow. She's been so sweet and polite today. She asks for things very nicely, and is always thankful for what we give her. Today she said, "These spaghettios are quite good!" She took two naps today, but went back to bed for short rests quite a few times. She actually watched TV two or three times, but I don't think she ever got through a whole show. Foods of choice today: cheetos and crackers appetizer while we heat up the main course, yogurt (or as Randall puts it, go-gurt yogurt, yogurt yogurt, or Dora yogurt), curly pasta with butter and cheese, cheese grits, Clifford soup, spaghettios, mashed potatoes, and refried black beans (that was new today--thank goodness we had some). We pretty much have an assembly line of food that we keep cooked and ready to reheat at a moment's notice.

Randall went to campus today to meet with one of his professors and came home mid-afternoon. Then I drove to Durham for a dental appointment to get my permanent crown put on. I ran a few errands to kill time while I waited for traffic to die down and got home just as the girls were getting ready to take baths. They were both so happy to see me, especially Sophie. She's quite a mama's girl (which is fine with me--it's nice to be so loved).

Posted by Susan at 09:45 PM | Permalink | Comments (1)

9:00 PM (Randall posting--and, if you'll note, I've figured out how to create my own log-in, so I'm not sure we'll need to indicate at the top of the message who is posting because the bottom of the message will indicate who posted, right?).

Today was clinic day, and it was my turn to take Sophie. Since this was not a sedation visit, we were somewhat flexible on our time this morning. We left a little before 8:00 and arrived at the clinic around 9:40--traffic was worse than normal. Sophie was mostly content on the ride in but got agitated about 2/3 of the way through and insisted that she wanted Susan (which became something of her mantra for the rest of the morning). We got to the clinic and got her checked in--she now weighs over 35 pounds! When it came time for the doctor to check Sophie out, she was really, really reluctant to go in the exam room (same place she got the PEG shot, if I remember correctly). While it is not at all unusual for Sophie to get agitated, it seems as if the steroids means that she'll remain agitated for much, much longer and will be pretty much unconsolable.

The treatment went fairly well, although she got pretty tired of sitting in my lap--and I got pretty tired of her heavy, sweaty body sitting in my lap (although you know that I love her), so we were both pretty ready to get out of there as quickly as possible. Unfortunately, Sophie's patience ran out about 1 hour before the medicine did, so that last hour was pretty cranky. Thankfully, the clinic provides pizzas for lunch and food is always a good distraction, particularly in the throes of steroid treatment!

The ride home was pretty uneventful, Sophie slept most of the way. She snacked and napped for the rest of the day until this evening when we went to get some last-minute school supplies (tomorrow is the first day of school--it's hard to tell who is more excited, Elisabeth or her parents).

Treatment-wise, this is where we stand. Sophie has five more days of steroid treatment, after which she will take a week-long break. On or around Labor Day, we'll get another CBC (blood count check) to see where she's at. If her counts are high enough, we'll continue with the second half of this round (no steroids, different drugs). If her counts are too low, we'll wait a week. Once again, we're not sure what to wish for.

I will say, that given how crabby and demanding Sophie has been these last few days, it seems as if Susan and I have been remarkably patient with her. Not completely patient, mind you, but it has been surprisingly easy to get up with her twice every night, tending to her every whim, and enduring her frequent and sudden fits. I tend to be less patient with the girls than Susan, I think, so I am particularly thankful for the grace afforded us during this stressful time. Thank you all for your prayers and kind words.

Posted by Randall at 09:01 PM | Permalink | Comments (4)

7:45 PM (Susan posting): Whew--what a day! Sophie ended up sleeping from 7:00 last night until 11:15. So we gave her medicine then (we usually shoot from 8 PM). She ate a lot, went back to bed and was up again at 12:15 and again at 5:15. She wanted me to sit with her all three times, but Randall let me sleep in this morning (until 9:00), so I wasn't totally exhausted. I did join her in a nap this afternoon, which was just heavenly. She honestly spends nearly her entire day eating, going potty, or sleeping. I think she might have watched TV or played for a total of a half hour today.

We pushed her a little too hard this evening. There was an open house at Elisabeth's school, so we all went to that and then picked up some medicine for Sophie in town and had dinner. She was totally exhausted by the time we sat down to dinner. Of course, after carrying her around for the entire open house, I was pretty tired myself. She must be pushing 40 pounds. I think she could have done the open house or the dinner but not both. So Randall took her outside and rocked her while I ate, and then we switched off so he could eat. She fell asleep pretty quickly after we got home, and we'll medicate her whenever she wakes up tonight.

Elisabeth was beside herself with excitement during and after the open house. Seeing the staff and old friends was just great for her. Her new teacher seems very nice. We were disappointed to learn that Elisabeth and Haley won't be in the same class this year, but one of the girls from church (Kayle) is in Elisabeth's class, so that made it a little better. School starts Thursday! We're all looking forward to it.

Posted by Susan at 07:49 PM | Permalink

8:30 PM (Susan posting): Sophie was up for "snacks" three times during the night, but she didn't eat as much at any one sitting as she did the night before. I was planning to go into work early this morning, but I was really tired after I took my shower, so I went back to bed for a little while. I was still in before 9:00, so it wasn't too bad, and I worked through lunch (eaten at my desk).

Sophie is even puffier today than she was the day before. Even her temples are swollen. Her shirt is stretched tight over her belly, and she has a double chin. Randall said at dinner that she's starting to look like Violet in Charlie and the Chocolate Factory. Here are two pictures, one from the end of June (before steroids) and one from yesterday.

Randall said she seemed really miserable today. When he asked her if she was uncomfortable, she said yes. When he asked what specifically was uncomfortable, she said "my bed." And she has the most comfortable mattress in the house, so there's not much we can do about that.

One of the side effects of the steroid is night sweats (which she definitely has), so Randall changed her sheets today. She's also having pretty bad gas (frequent and quite pungent). Poor little thing. After dinner tonight, she helped out with the dressing change and only got a little upset when I used the alcohol swabsticks to clean the area where the catheter comes out of her chest. She's been "resting" for about an hour and half since then. I don't know if she's down for the night or will be wide awake before long.

Posted by Susan at 08:34 PM | Permalink | Comments (4)

10:00 PM (Randall posting): Today has been another long Sunday. Susan and I just got home from date night, and the girls are both still awake. I guess we're not surprised. Sophie has been so off schedule these last couple of days that "bed time" is a completely foreign concept to her--I mean, what would you call bed time for a child who crawls in bed at least five or six times a day?

Sophie has been really, really wiped out today. This morning in church, she looked so pitiful and eventually just laid down in the pew and rested. Everybody commented on how puffy she looks and how tired she seems. It's actually quite hard to have other people point out these changes in Sophie. She's clearly not herself. I took a picture of her this evening. Maybe tomorrow during the day I'll get it uploaded and we can do a before and after shot of Sophie on steroids. She has become so heavy it's noticeable just to pick her up. She also has become very aware of how crummy she feels (although she doesn't seem to be too concerned with her appearance).

We've been getting up pretty consistently twice a night with her--once around midnight and once around 4 AM. Last night at midnight I was still up (not working on my sermon, mind you, but I couldn't sleep, so I was just watching TV). She was so sweet and so polite and patient. It actually was quite pleasant to sit with her at the table while she had a "snack."

One week from tomorrow is the last day of steroid treatments in this phase. We're hoping this time will be the most challenging of this particular round, but we still have a long, long ways to go. Thank you for all of your comments and prayers and encouraging words. It means a great deal to us to know that so many folks from so many places are thinking about us and loving us through this time. We are all hanging in there as best we can and praying for the strength to face tomorrow.

Posted by Susan at 10:03 PM | Permalink

8:30 PM (Randall posting): As expected, the internet connection at Mary's was unreliable. We had a good visit--too short! The upshot of the past couple of days has been that Sophie still flies off the handle into a steroid-induced rage at the slightest little thing (and never when you might predict). Elisabeth got all worked up about staying with Grammy and Nannie and so she came home with us after all. I'm sure Mary was disappointed, and I'm sorry that it didn't work out, but neither Susan nor I is in the mood to force either of our kids into anything right now. I'm sure there will come a time when Elisabeth will beg us to take her to Grammy's house and not want to come home. This just isn't that time.

We're all home, safe and sound, and no worse for the wear. Sophie is more than halfway through the steroid treatment, so there's something to look forward to. On the way home today, when Sophie (completely agitated) said for the three hundredth time, "I can't wait until I get home!" Susan said (equally agitated), "I can't wait until she's not on steroids anymore." I'd like to take a picture of Sophie sometime soon to show how much puffiness she has gained. It's much, much more noticeable than it was in the first round of treatment. Sophie's hairloss seems to have tapered off some, though. We're learning to not expect much one way or the other, because all that can happen might, but might not, and even the extent to which something may happen is never a matter of all or nothing.

It's good to be home and good to be "over the hump" with the steroids (we hope, we hope, we hope!).

Posted by Susan at 08:41 PM | Permalink | Comments (2)

8:00 PM (Susan posting): It's been a LONG day. Our trip to the clinic went well. On the way there, she was upset that we weren't going to Grammy and Nannie's right away, and somehow she got an idea in her head about the clinic that we still don't understand. She said over and over, "I don't want to hold the pole for a long time." She was hooked up to an IV pole, but she certainly wasn't going to have to hold the pole, so I don't know what was in her little head, but she was very insistent about it. Once she was hooked up, she never said another word about it. We arrived at the clinic at 9:30 and left around noon. She had gained 2 pounds over the last five days. Her blood pressure was fairly high, but they're going to wait another week to see whether to prescribe Lasix. Since she is doing so well with potty training and she's on so many medicines right now, they agreed that we should not give her extra stuff unless she really needs it. She pretty much spent the whole time in my lap and flew off the handle at any little thing that didn't go the way she expected.

We had to make several potty stops on the way to Virginia, and it felt like a very long drive. Both girls napped (but not at the same time). We were so happy to get here this afternoon. Both girls are having a great time, and Sophie's been in a terrific mood. Her new food obsession is mashed potatoes. Luckily, mom had a few boiled potatoes leftover in the fridge that I mashed with some milk. We'll be taking a trip to the store tomorrow to get some more.

Randall and I are looking forward to some uninterrupted sleep tonight. We sleep upstairs in the attic (and we get there by stairs outside the house), and mom will be sleeping downstairs with the girls. She said she didn't mind taking care of Sophie during the night to give us a break. We'll try to pre-cook as many things as possible so she can just heat them up in the microwave. I hope it goes well tonight. Honestly, it's like having a newborn again, except she cries a lot louder.

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

7:00 AM (Susan posting): Wow, what a night. Sophie woke up just before midnight, hungry, so I fed her (and fed her and fed her). She ate two packages of cheese grits, crackers, leftover Clifford soup, and vegetable soup. Then she "couldn't sleep" so Randall laid down with her. She woke up again at 5:30, hungry. She had gone through most of the leftovers, so Randall had to cook more Clifford soup, and she ate nearly the whole package. I just gave her the morning dose of medicine, and she finished off a go-gurt on top of all of that. We'll head to the clinic in about an hour.

Posted by Susan at 07:08 AM | Permalink | Comments (1)

8:00 PM (Susan posting): We certainly appreciated the outpouring of support we received (through comments, by e-mail, and by phone) in response to last night's weblog post. It's really nice to know that you all are keeping up with us and understand our highs and lows.

Last night after I posted, I gave Sophie's hair a trim (cut about an inch off the bottom and her bangs). It sure is easier and faster to cut now that it's gotten so thin. She looks pretty cute with shorter bangs. The steroids are definitely causing some water retention. Her cheeks are getting big, and her stomach is really sticking out. We bought her size 4 panties over the weekend, and we'll try to keep her in dresses for a while so that she won't be restricted by tight waistbands. She went to sleep at about 6:30 tonight, but we'll have to wake her up later for her evening dose of steroids. I hope she'll go back to sleep pretty easily.

Randall was able to go to Duke today to do research for his paper. He thinks he can finish off the paper without going back for more material. I was able to work pretty well at home with Ashley watching the girls (her brother Nick was here for a while too). Sophie pretty much refused to have anything to do with Ashley for the first couple of hours. Ashley finally got through with a food offering. Ashley spent much of her day catering to Sophie's food demands. And I can tell you that if she doesn't get exactly what she requested, she will have something to say about it. One time when she asked for soup, I gave her Dora soup instead of Clifford soup, and I thought I would never hear the end of it. Luckily, Elisabeth was willing to eat the Dora soup, so I was able to give in without totally caving.

We're nearly packed for our trip to Virginia. We will try to update the weblog while we're gone, but if I can't get connected to the internet or the phone line goes down, I won't be able to do it--so don't worry if you don't hear from us every 24 hours.

Posted by Susan at 07:54 PM | Permalink | Comments (1)

5:00 PM (Susan posting): This is hard. Having Sophie be on steroids again is hard. Trying to manage the life that has gone on around us while Sophie is on steroids is hard. All things considered, I think she's doing well, but it's just challenging to see her so affected by the medication. The doctor says she's likely to lose all her hair during this phase, and that just makes me sad on so many levels. A bald child is such a visible reminder to us and others that she has cancer. It's nice to be able to go out in public now and not have to explain to everyone we encounter what the situation is (or to have them openly stare and say nothing). Perhaps it's just denial on my part, but the fact that she's kept so much of her hair is somehow comforting to me (perhaps on some level it makes me think she's strong or her body is better able to tolerate the medications), and to have that go away is scary.

Sophie's behavior while on steroids is very similar to how she was in the first few weeks after she was diagnosed, so it brings all kinds of old emotions back to the surface (for all of us, I guess). Steroids also make Sophie more demanding (and we've got two kids at home until the end of the month), so whoever is home with the kids during the day generally feels pretty overwhelmed, epsecially if there are demands and tasks other than childcare on the agenda for the day. With my recent trip, all of this has fallen to Randall (at the same time that there are a fair number of church meetings and he's trying to finish off that paper). I worked just a half day today and will stay at home tomorrow, but I don't know how much that will undo the stress of the last week.

Things should ease up in the next day or two. We realized we have another opportunity to visit my mom and grandmother before school starts for Randall and Elisabeth, so we're going to head up there on Wednesday after Sophie's treatment (assuming we can manage to get loaded up in reasonable time to make it to the clinic). It will cut off over an hour of travel time to leave straight from Chapel Hill. We'll have to return Saturday to be home in time for the Sunday service. This will probably be our last opportunity to visit until Christmas break. Mom suggested that we leave Elisabeth with her when we come home on Saturday and then she'll meet us at clinic the following Wednesday (she has the week off). She's smart!

Posted by Susan at 05:08 PM | Permalink | Comments (5)

9:00 PM (Susan posting): It's been a tiring day. I'm still jet-lagged, so it was hard to get up this morning (felt like 4:00). We enjoyed church, although it wore Sophie out, and I took her home after the service instead of staying for Sunday School. We spent some time at home this afternoon and weren't able to line up a sitter for date night, so we took the kids with us. It was fun, and we'll just spend some time together talking now that the kids are in bed before we head to bed ourselves.

No new symptoms or side-effects to report for Sophie. She is still eating small amounts multiple times per day and asks to lie down fairly frequently (and actually naps sometimes). Her cheeks don't seem any puffier at the end of the day than they did at the beginning, and I didn't see clumps of hair falling out today (although we pretty much avoid brushing her hair unless we absolutely have to).

Elisabeth seems to be enjoying being home. She spent some time this afternoon showing off the things she brought home from her trip. She also told us that Oma had been training her "to like Sophie better", and she thinks it seems to be working. I think we need to hear more about that from Oma!

Posted by Susan at 09:05 PM | Permalink

10:30 PM (Susan posting): We're all home--finally! It sounds like Randall and Sophie had a pretty good day. She took a short nap this morning but skipped her nap this afternoon and was much more active. They picked Elisabeth up at around 7:30 and came home.

My flight was supposed to leave Seattle this morning at 8:50 but was delayed for over an hour because some paranoid person decided they didn't like the look of another passenger and demanded to be let off the plane after we had already begun to taxi for takeoff. It was all very exciting and also frustrating, because most everyone (including me and the person I was traveling with) missed thier connecting flights. Luckily, we got booked on the next flight, which was just 80 minutes later. We also couldn't be too irritated, because for some reason, RTI's travel agency had booked us in first class all the way back, so we were pretty comfortable. I think I could get used to that. Anyhow, I finally got home around 9:45, and am happy to be back. Oh, and I am feeling well since my fall. My ankle is pretty much back to normal (no more limping) and I'm not sore all over like I was, but I have some nasty-looking bruises on my knees. I won't be wearing shorts out in public for a while, that's for sure. Maybe the public is quietly thanking me and would have preferred not to see my alabaster legs regardless of the extent of my bruising!

Posted by Susan at 10:36 PM | Permalink

7:35 PM (Randall posting): It should give you some indication of our day to tell you that Sophie is already in bed asleep. We got up at our normal time this morning, had breakfast and went to the clinic. The Expressive Arts folks were there again, and Sophie got to paint with some watercolors. For the most part, though, Sophie wasn't into much of anything and wanted just to be held the whole time. Dr. Gold said that it was most definitely the steroids. Older kids describe being on steroids as making them feel "funky" and I guess younger kids (like Sophie) aren't quite as articulate.

She's definitely not herself in any way. Like I said last night, I'm surprised by the suddenness of these changes, especially since we have 17 more days of steroid treatment. Aside from the behavioral changes, which are dramatic and clearly not my imagination, what's left of Sophie's hair has started to become quite brittle and fall out. I'll be curious to see if the peach fuzz that has grown in underneath will thin out as well. Today at the clinic, it seemed to me that Sophie's face seemed a little puffy, and tonight when she got ready for bed, I needed to switch her to larger, more loose-fitting panties because her stomach has already started to get a little bloated. It's all just very shocking and hard to take. I'm thankful that Sophie as been as strong and healthy and "normal" for as long as she has been, and I'm thankful that this treatment (and all of its unpleasant side-effects and consequences) is temporary.

As for the whole getting-the-shot-at-the-clinic part of today's story, that seemed to go okay. We talked about it some more, and Sophie seemed resigned to the whole thing (I suspect that she felt so bad from the steroids that she didn't care to think too hard about the shot). When it was time for the shot, we went into an examination room and after some kicking and screaming, it was all over. Sophie cried for a long, long time afterwards and even when we got out of the car at home complained about it hurting. She did say, however, that she was going to tell Mama that she was very brave, and, this evening, she took the band-aid off the injection site all by herself so I could look at the spot where it hurt. I promised her that there would only be one more shot like that for a while--we'll see what happens when she needs to go in for immunizations!

Susan and Elisabeth return tomorrow evening. I'll be glad to have them home.

Posted by Susan at 08:01 PM | Permalink

9:30 PM (Randall posting): Well, it seems as if the drugs are already kicking in. At least, I'm hoping it's the drugs and not something else that is going on. We'll find out tomorrow when we go to the clinic for Sophie's PEG shots and I'll get the chance to talk with the folks there.

Sophie's appetite has been off all day. She is definitely interested in food, but only in small amounts. By this afternoon, she was asking for Clifford soup, eating barely half a bowl, and quitting. Five minutes later she was asking for more food. I'm glad she's eating throughout the day (especially because of her risk of having hypoglycemia), but I worry that she's not eating enough when she does eat.

This morning Sophie lounged around the house, moving back and forth between the couch and the bed. She was not terribly excited when Rebecca came to sit with her, and barely paid any attention to her the whole time I was here. About mid-morning, Sophie said she wanted to take a nap and I took her back to her room where she fell asleep. That is not normal for Sophie. I remember, however, how lethargic and pitiful she was the last time she was on steroids. I never expected it to hit this suddenly, though.

Susan and Elisabeth seem to be doing well where they are. Susan had a long day of interviews today (12 hours, I think) and Mom is doing a bang-up job of wearing Elisabeth out. The excitement in Tennessee today was that my niece, Ashley, flew in from Texas to stay with Mom for a few days. I'm sure Elisabeth will quickly bond with her cousin that she doesn't get to see too often. I hope Ashley can handle all the attention (actually, I'm sure she can).

Two more days and the ladies come back Saturday night. I'm home alone until then. Sophie will probably continue her eating and lounging, and, if all goes well, I'll continue to make some progress on my paper. Remember us as we go to the clinic for Sophie's shots tomorrow morning. I had a long talk with her about that today, about what to expect and about how the shots are important to make sure she stays healthy and so on and so forth. I hope preparing her for something traumatic is better than springing it on her. Nevermind. I know it's better than springing it on her. Sophie seemed to really soak in our whole discussion about the shots today. She never got anxious or worried at all. We'll see how she does tomorrow!

Something to be thankful for: she will only need one more PEG shot treatment after tomorrow.

Posted by Susan at 10:01 PM | Permalink | Comments (2)

6:00 PM (Randall posting): It has been a rather productive day at home with Sophie and me all alone. Sophie has seemed slightly more irritable and tired today, but mostly she has seemed a little unsettled. I can't tell whether that's the drugs or the state of our family right now. For the most part, she has allowed me to make some headway on a variety of projects that have been for too long on the backburner (including my well-overdue paper from last semester, which is due by September 1).

I spoke with Susan earlier and she arrived safely in Seattle. Unfortunately she twisted her ankle and fell in the airport. I guess she fell pretty hard because she said that she had gotten pretty banged up--not too bad, I imagine, because she was going to continue with her meetings this afternoon. This will be a very, very busy work trip for her, so I hope she will be okay.

Elisabeth is having a blast at my mom's house. They've been swimming and shopping and to the movies and out to eat. I'm thankful that Elisabeth is getting some well-deserved undivided attention with Mom. Of course, she's going to be a total attitude case when she gets back!

Tonight is family night. I'm sure Sophie will enjoy herself. Her outgoing personality really shines at events like these. As an introvert, I always feel a little overwhelmed and uncomfortable in a crowd, but Sophie has no such qualms. She was like this before the leukemia, and I'm sure all the attention she gets now (and all the internal strength and will-to-live she's developing) will only further accentuate these positive traits. Look out world! Here comes Sophie!

Posted by Susan at 06:07 PM | Permalink | Comments (1)

2:00 PM (Susan posting): We're home from the clinic and it went really well. She was a little fidgety about going into the procedure room when it was her turn for sedation. Last time she had a spinal tap, they had to pre-sedate her just to get her into the room. Today we managed to distract her enough to stay in the room and administer the sedation that totally knocks her out. During the spinal tap, in addition to administering methotrexate to prevent cancer from entering the spinal column, they withdrew some spinal fluid to test for the presence of abnormal cells. They will run formal tests, but the doctor said his preliminary examination showed no abnormalities. After she woke up from that procedure, they administered the doxorubicin (which turns her urine bright pink!) and vincristine. They reviewed the first half of the protocol with me and gave me prescriptions for dexamethasone (the steroid) and fluconisole (an anti-fungal medicine that is often administered along with steroids). She took her first dose of both about a half hour ago. Although as it turns out, the nurse practitioner just called to say she should not be taking any steroids at home today because they gave her today's full dose through her IV--not that they told me or her doctor that (I had called him before giving it to her to find out how to handle today's dose). As one of the parents at the clinic today advised, we had better make sure our pantry is fully stocked! We also have to be prepared for the swelling that is typical and will distort her appearance.

One interesting thing about the next few treatments is that she will be going in to the clinic on Wednesdays instead of Tuesdays (Tuesday, which is sedation day, is always very busy and she doesn't need to be sedated for anything). Of course, I had arranged my schedule to be off on Tuesdays instead of Wednesdays, so I'll either have to miss some meetings, or Randall will do the clinic visits for the next two weeks.

Tonight I'll drive to Durham to spend the night with a friend from work so I don't have to get up quite so early to catch my 6:30 AM flight tomorrow. I'll be flying to Seattle for a work trip and returning Saturday (the same day as Elisabeth). I planned the trip for this week so that Randall would only have one child while being a single parent. And the steroids shouldn't kick in too quickly, so I hope he won't find my time away too stressful.

Posted by Susan at 02:23 PM | Permalink | Comments (1)

2:30 (Randall posting): It has been a quiet day at home with just Sophie and me keeping things going. Susan left for work not terribly early this morning (we all got to have breakfast together, which was nice for a change). Elisabeth seems to be having a terrific time at Oma's--so much so she is really reluctant to come to the phone and talk with us!

The home health visit went well this morning. Sophie once again removed the dressing herself and that was fine, as it has been for the last couple of times. She wasn't quite as cheerful through the rest of the procedure, but she didn't cry and kick and scream. One moment of panic was once all that was taken care of, the nurse could not draw blood out of Sophie's line. She tried and tried, but nothing would draw into the syringe. Turns out the syringe was faulty, because once we got a new one, all was well. The IV line is so critical to Sophie's care and treatment that we really need to make sure that all stays well with it.

I just got off the phone with the clinic, and Sophie's counts are terrific. I imagined as much given how well she has looked these last few days. Susan isn't here to format the treatment table, but I think I can borrow the html code from the previous table to give everyone a sense of what we're going to experience in this next phase of treatment (starting tomorrow).

Here we go:

If you're looking at a calendar, you might get overwhelmed, but day 50 (the final day of treatment) will be September 27th, barring unforeseen circumstances. In this phase, Sophie will get some form of chemotherapy for 37 out of 50 days. Two of these drugs (Doxorubicin and Thioguanine) are drugs that we have not yet encountered. The rest are familiar, not in the sense of being (fondly) familiar, but in the sense of how Elisabeth would use that word: "from earlier."

These next 50 days will undoubtedly be an enormous challenge to all of us, especially Sophie. We have already been carried thus far and we shall be carried through this as well, I am sure. Please remember to keep us in your thoughts and prayers as we start a new adventure early tomorrow morning.

Posted by Susan at 02:40 PM | Permalink | Comments (1)

9:45 PM (Randall posting): As Susan suggested, it's been a quiet, normal weekend for us. It's certainly quieter than normal with Elisabeth at Oma's (pretty amazing, given how quiet Elisabeth is around most people, I know). Several people have commented on how much energy Sophie has. She clearly is feeling stronger than she has in a long time. I'll be curious to see how her counts are tomorrow afternoon. Surely by now her counts have rebounded and she's ready to begin the next phase of treatment.

Since our little friend Macie passed away, I have been acutely aware of how Sophie looks, how she's feeling, if she seems tired, etc. At this point, it's clear to us that the leukemia is no longer as serious a threat, but she is still vulnerable. Our desire to return to some sense of "normal" sometimes allows us to ignore or deny (?) the seriousness of Sophie's situation and her treatment. We have indeed been blessed that she has done so well, and we have every expectation that she will continue to do well and thrive, but I wonder if we will ever feel completely unthreatened by death or disease again.

I imagine that everyone who has ever battled cancer knows that it can recur, or pop up again somewhere else. Even when the prognosis is good (which it is for Sophie), there is always some nagging possibility that somewhere down the line the other shoe will drop, that something unexpected will happen. We never dwell on those possibilities, we rarely acknowledge them unless, like now, we feel like we must. This is the reality of our situation, and the reality of the situation for many, many other families.

I don't mean to sound down or morbid, because generally speaking I think we're optimistic and hopeful and not at all overwhelmed or overcome by our situation. There is, however, a nagging sense of dread, that quickly and easily pops up and begs to be dealt with, particularly when we've had a bad day, or when our defenses are down (or blown away).

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

2:00 PM (Susan posting): The rest of yesterday was nice (and it's amazing how quiet and neat things are without two children in the house). We sure do miss Elisabeth though. Sophie asked about her numerous times.

Church was good this morning. Lots of people are on vacation (last chance before school starts, I guess). Randall and Sophie are napping, and I'm catching up on things here and there. Tonight we will have a new sitter (Rebecca) watching Sophie while we got to Bible study and then out to dinner.

Posted by Susan at 02:13 PM | Permalink

11:30 AM (Susan posting): Elisabeth has safely arrived in Tennessee, where she will stay until next Saturday. She didn't cry when I dropped her off at the airport. I didn't cry either until I got some bad news on the way home. Randall had checked the web site of Macie McCloud (the baby we mentioned last week who has AML and was struggling) and found out that she died yesterday. We're just heartbroken to hear this news, and of course, it's easy for us to empathize with what they must be going through. Macie had been doing very well with her treatments, and then an uncontrollable infection took her. That's just scary and incredibly sad. Please pray for Macie's family as they go through this unimaginably difficult time.

Posted by Susan at 11:31 AM | Permalink | Comments (2)

9:00 PM (Susan posting): Another long day is behind us. Going in to work four days this week was hard on me (and hard on the ones at home). It didn't help that it was often accompanied by tooth and gum pain. It's feeling much better today now that my gums are less swollen.

Tonight after dinner, we watched the movie Ice Age. Randall and I had seen a preview for Ice Age 2 in the theater and thought it was hilarious, so we decided to rent the original movie for the girls. Elisabeth was crying her eyes out during the sad part near the end (of course, everything works out, so she got over it). She is so tender-hearted--it's very sweet.

Elisabeth is so excited about visiting her Oma tomorrow. Sophie and I will take her to the airport while Randall has some time to himself to work on his sermon. It's going to feel so different without Elisabeth here. Having just one kid to look after will be very helpful when I travel to Seattle later in the week (for work), but we sure will miss her. Sophie is old enough now to miss her too.

Posted by Susan at 09:14 PM | Permalink | Comments (1)

8:45 PM (Randall posting): It has been a fairly long day--longer for Susan than for the rest of us, though! Susan left earlier than usual this morning because she had a 7:30 dental appointment to get a crown put in. She was more than a little nervous and anxious about the whole procedure. It sounds like it went mostly okay, but she is sore and tender (her lunch today was mostly mashed potatoes, I think).

I woke up this morning a little after eight (first time in a long time, mind you) when Sophie got up, walked into our room, stood next to the bed and said, "Daddy, the sun came up in my room." We got up and started our morning routine (cheese grits and orange juice). Elisabeth woke up a little while later. Today has been a quiet day at home. I took the girls to lunch at Wendy's just to get out of the house, but that has been the extent of our excitement today.

I noticed today that Sophie's color seems to be coming back a little bit. She's not as pale and she doesn't have dark circles under her eyes (at least not as bad). It was somewhat surprising to notice it because it probably means that we haven't noticed how sickly she has been looking. I went back over some old pictures and even where it was obvious that she has lost some hair, it is more obvious now than ever that she has lost a lot of hair. Much of what she is losing now is actually breaking off about an inch or so away from her scalp. She has noticeable lines in her hair (like roots, almost). I tell everyone that Sophie's hair is like tree rings--we can tell for how long and when she has had treatment.

At the moment, Sophie is laying on her bed facing the office saying, "I love you, Dad. Do you know what I love best? I love you." She did not have a nap today, and I suspect it's the sleepiness speaking.

Posted by Susan at 08:45 PM | Permalink

8:00 PM (Susan posting): ALthough I wasn't here for most of it, it sounds like Randall and the girls had a good day. Ashley was here to help, so Randall wasn't too overwhelmed. I went to the dentist today and found out one of my back molars is cracked, so I will be getting a temporary crown tomorrow (which means I'll be driving in to Durham four times this week instead of three). Randall said Sophie was being really bossy today and yelled at Ashley a lot. He had to talk with her several times about using a nice tone of voice and being respectful. Randall also tried out a new strategy today for naps. Because Sophie has been up until nearly 11:00 several night in a row, he decided to try skipping her nap today. She seemed a little tired a few times, but we are eager to see how bedtime goes tonight. It's important to us to have the girls in bed early enough that we can truly enjoy some time alone together without interruption (whether we're talking or just watching TV or a movie).

Posted by Susan at 08:09 PM | Permalink

9:45 PM (Susan posting): Another satisfying day has gone by. I worked at home today (although I didn't work too hard since I had planned on taking the day off for treatment (thankfully, not needed now)). Mid-morning, we took a break to go fig-picking at the home of some friends of ours. We visited for quite a while and ended up staying for lunch. Sophie took a long nap while Randall and I took care of things (work for me, taxes for Randall). After an early dinner, we went back over to the nursery for a walk and hanging out with our friends. Sophie is now calling Joyce "Grandma" since that's what her grandsons (who are also there in the evenings) call her. We got home about an hour ago, and we had a snack before getting the girls in bed. We called Randall's mom tonight (Elisabeth will be visiting her on Saturday), and Elisabeth started crying when it was time to say goodbye. She is still crying on and off now, poor thing. Sophie has been saying and doing all kinds of cute things lately. She's still telling that same knock-knock joke to anyone who will listen. She's also been making up songs (which she sings at the top of her lungs, and I can tell you that you will regret it if you ask her to sing more quietly). She also tries to avoid doing what she is asked by saying that some particular body part is broken (e.g., she can't sleep because her eyes are broken or she can't finish eating because her mouth is broken).

Someone sent us a picture of me and Sophie that was taken at the clinic the day she refused to have a spinal tap (July 1). It's pretty good of both of us. It must have been one of the calmer moments when the nurse was nearby but not actually trying to touch her. I think she had received two sedation injections at this point.

Posted by Susan at 09:46 PM | Permalink | Comments (1)

9:30 PM (Susan posting): We have had such a good evening. It was nearly 6:30 when I got home from work today, and we had a light dinner (including incredibly delicious fresh tomatoes and peaches we had gotten from various friends at church). Then Randall had a bright idea to go walking at Sampson Nursery, which is owned by friends at church. We visited with them for a bit, went for a walk on the grounds, and then the girls went for a ride on the golf cart with our friends while Randall and I walked back by ourselves and talked. We enjoyed the visit, we enjoyed the walk, and we enjoyed the fun. We hope to do that again soon and often!

Posted by Susan at 09:21 PM | Permalink

5:45 PM (Randall posting): Just when you think you've got life all figured out, you get a curveball. Sophie's counts came back a while ago and they're actually lower than they were this time last week. Treatment this week is definitely out of the question, so we're off for yet another week. This was not in the plan, but I can't say that either of us is disappointed. I don't know if you noticed the dread in our voices as we described the next phase of treatment, but if you didn't notice it, it was there. We're really, really not looking forward to three solid weeks of steriod treatment, plus all the additional drugs, plus two new drugs that we haven't ever had yet. Although that phase cannot be avoided, it won't happen this week and I suppose we're thankful for that.

Thinking her counts were rebounding, I took Sophie to Countryside this morning after home health care (which went very, very well, by the way). Sophie enjoyed visiting and playing outside and in the three-year-old classroom. There weren't very many old friends in the 2-year class, but there were a couple, and there were some happy little reunions on the playground. Sophie enjoyed visiting the three-year-old classroom and, as you might expect, there were more familiar faces there. When it came time to leave, she was not happy about leaving and cried all the way home. I sat with her for a while once we got in the house and she cried and cried. I then asked if she wanted to lay down, and she did. Before long, she was asleep and she hadn't even had lunch yet. After a relatively short nap, she got up and got a late lunch.

Getting back to the home health care visit, it went really well. Sophie pulled the dressing off herself and when it came time to clean the site with the swabs, Sophie laughed (!) and said that I was tickling her. A couple weeks ago she would scream bloody murder and kick and cry her eyes out, and now she's laughing and giggling the whole time. I never ever thought that would happen, nor did I ever expect it to happen, but it has been a little, unexpected blessing in this whole situation. As I was working on Sophie's dressing, I told the home health care nurse that it is hard to imagine that we'll be doing this for another two years almost! Who knows what giggles and laughs and blessings we'll stumble across in those two years?

Posted by Susan at 06:02 PM | Permalink