Sophie's World

2:15 PM (Susan posting): We had a tough time at the clinic. Sophie was due for a spinal tap, but on Fridays they can't do full sedation. They really tried to knock her out as much as they could without an anesthesiologist there (two different forms of sedation, three doses of one and two of another), but Sophie was too worked up about getting a "shot" (especially in her back), that she was completely hysterical any time they came near her back. It didn't help that I asked the doctor about how to administer the emergency glucagon shot when we first got there (which reminded Sophie of the leg shots she got last time we were there), and they administered a numbing cream on her back (which reminded her of the leg shots), and they took her to the "procedure room" (which reminded her of leg shots). We tried injecting her IV sedation in a different room, and they even tried doing the puncture in one of the regular examining rooms, but she was just too upset. She was completely calm (and pretty loopy from the drugs) in between attempts, but as soon as anyone touched her, she would stiffen up and scream bloody murder. Once we decided not to try anymore, they went ahead and injected the vincristine and methotrexate into her IV.

We're just going to do the spinal tap at her next visit (which is on a Tuesday when they do full sedation). She'll be totally agitated then too, I'm sure, but they can knock her out, so it won't matter, and when she wakes up, it will be over. That will be the last treatment in this phase, and then we'll have a break before the next treatment (which is very intensive). Whew! We're exhausted.

Now that her lungs have gotten a little exercise, she seems to think it's appropriate to scream at the top of her lungs if any little thing doesn't go her way (the DVD player isn't loud enough, the McNuggets box won't close because there's a french fry in the way, the straw isn't positioned correctly in her juice box, the sun is "touching" her blanket--pretty much anything that's really hard to take care of while driving). She nearly fell asleep when we got close to home, but when we came inside, Elisabeth was watching her new Barbie Nutcracker video, and Sophie preferred that to napping. Oh, she was so mad at Randall for making her nap, but it didn't last long, and her room is very quiet now. Thank goodness we don't have to do this again for another 10 days.

Posted by Susan at 02:18 PM | Permalink | Comments (1)

8:00 PM (Susan posting): It's been a nice day today. The girls and I ran errands this morning while Randall met with the college-age young adults at church (well, two of them, at least) and worked on his sermon. Elisabeth had wanted to go to Walmart, but I told her we needed to stick to drive-through type places because Sophie's counts are too low to be in crowded places. We decided to stop for a snack mid-morning at Sonic, and because there were no kids in the play area, I felt comfortable letting Sophie and Elisabeth play there instead of being confined to the car. At one point, Sophie started to climb up a ladder, got to the first rung and said, "My counts are too low to do this--I'd better get down." It's amazing the language that she picks up. She knows there are lots of things she can't do because her counts are too low, but I guess she doesn't understand why exactly!

I also picked up some tomatoes and peaches from a vegetable stand, so we had tomato sandwiches (with fresh basil we're growing in our yard) and fruit salad for lunch. Yum! While Sophie napped (and Randall tried to recover from a pretty bad headache), Elisabeth and I went out for the afternoon. We decided we would get our nails done before going grocery shopping. It was a fun, girly thing to do, and Elisabeth loved it! Unfortunately, the person who did our nails did a terrible job, but we felt pampered anyhow.

Sophie has not eaten well today, but she had a pretty good dinner. I tried a new recipe tonight from a new magazine we've decided to subscribe to--Cook's Illustrated. I love it, and it's making me feel excited about cooking. We were really in a rut. The girls didn't eat the new stuff, but they enjoyed their spaghettios (yuck!). We're going to try to get the girls in bed soon so we can enjoy some time together tonight. Randall's mostly done with his sermon, so he won't have to work all night. Sometimes we don't feel like we get much of a weekend, but with Monday being a holiday, we are really looking forward to a full day off.

Posted by Susan at 08:13 PM | Permalink | Comments (1)

5:00 PM (Randall posting): Sophie has had a bit of a hard day today. Her counts are definitely down, so she's pretty pale and tired (and cranky--more on that later). She woke up early this morning around 6:00am, but went immediately back to bed. In the past, that has been a sign of low blood sugar, and before long she was retching and acting like she was going to throw up. In case the nausea was from the chemo, Susan gave Sophie some Zofran and followed it up with some juice and a snack. That all seemed to help her a little bit, and she hasn't been sick any more today.

We know her counts are down, so we arranged for someone to stay with Sophie while the rest of us went to church. Although Sophie really likes Ms. Megan, she had a complete and total meltdown the moment Megan walked in the door, and it went on (as near as I could tell, since I had left early for church), for several minutes afterward. Susan and Elisabeth came to church anyway, and Sophie settled in with Megan and had a pretty good time. She sure was glad to see us all when we came home, though.

Our latest concern has been that Sophie really has not had much interest in eating anything, or she'll say she wants something to eat and once it is in front of her, she'll refuse to eat it or ask for something else. Aside from the frustration in this situation, we are worried that she's not getting enough carbohydrates and protein in her diet to keep her blood sugar up. I know that picky eating is age-appropriate, but under the circumstances, the chemotherapy and her general health are probably greater factors here than anything behavioral. Most of all, we want her to remain as healthy as possible under these circumstances, but we can't force-feed her. We're hoping that she'll turn a corner here before too long and regain at least a little bit of her strength and her appetite. Right now our strategy is just to keep putting a variety of things in front of her and hoping that something will strike her fancy.

Posted by Susan at 05:01 PM | Permalink | Comments (1)

7:30 PM (Susan posting): Well, it certainly has been an "Independence Day" around here. The girls are both very clear about not needing help lately, and neither of them has been as clingy today as they have been recently (it probably helped that no one left home today). We've had a good day, taking care of things around the house and generally enjoying a day without work hanging over our heads. Well, we did do some housework, and we made a really nice meal for dinner (two fairly labor-intensive recipes from Cook's Illustrated). The dishes were good, and the girls actually liked them. To celebrate the holiday, Elisabeth decorated some red, white, and blue birthday cups we had leftover (from her first birthday, I think!)--on each cup, she wrote (in red and blue marker), "Happay Birthday Amaraca."

Sophie woke up this morning saying, "I'd better have something to eat so I don't get low blood sugar." She sure doesn't miss much of what we say. She spent much of the day frustrating us by asking for a specific food (which we would prepare) and then deciding she didn't want it after she took one look at it. We don't know whether to blame this on chemo or a developmental stage. Either way, we'll be glad when she quits. Her food of choice lately is Lipton Chicken Noodle "Clifford" soup. Tomorrow--who knows?

As long as we're sharing our struggles with Sophie, we might as well talk about Elisabeth too, whose room is a constantly a disaster area. She's perfectly willing to make a mess, but when it comes to cleaning up, she really fights. We've tried lots of things to convince her it's not that difficult to either put things away when she's done with them (the problem being that she doesn't like to think she's done yet), or that even when there is a big mess, it doesn't take that long to straighten up (we set a timer, or ask her to pick up a set number of things). We're nearly at the point of letting her keep it a mess (as long as the rest of the house stays neat) and making her live with the consequences the next time she can't find something. Part of the problem too is that she simply has too many toys in her room, but that's our fault, not hers. When we first moved here, we had a rule that each girl would have one large basket of toys in her room, and the rest would be in the building. If either girl wanted to bring in something from the building, she would need to trade some of her existing toys for it. Unfortunately, we've been bringing things in from the building without taking things back. Taking care of the toy surplus is yet another thing on our ever-growing list of things to do.

Despite my complaining, we've really enjoyed our special day today. It's nice to have an excuse to take the day off and spend time together. The girls will go to bed soon, and we'll watch a movie or read books, or something equally relaxing.

Posted by Susan at 07:33 PM | Permalink | Comments (1)

9:00 PM (Randall posting): Today has been a long, long day. Nothing spectacular to report, really, but a long, long day. Sophie got up early this morning before Susan and I finished our early breakfast (Susan went to work today, so it was an early morning).

Generally speaking, Sophie seems to be in better spirits these last couple of days. The breakthrough with the Clifford soup yesterday was a big help because at least she was eating something with regularity. Today her appetite seemed to return to normal as well. She ate a variety of things and not just Clifford soup (spaghettios, roast beef from Arby's, you know, healthy stuff!). For the most part, the girls played very well together, but yelling and being bossy got the best of all of us eventually. Elisabeth had piano lessons today, so Sophie and I ran a couple of errands locally while she did that (a trip to the dump and returning something to friends of ours, that sort of thing).

The nice thing about them playing was that there was far, far less television than usual. I am really beginning to struggle with television, and it didn't help that the New York Times reported today that three new studies suggest television viewing leads to poorer academic performance among children.

Maybe because we've had such a decent break last week (at the beach) and this weekend (because of the Fourth of July), but it seems as if we're getting the determination to re-establish some boundaries for the girls (behavior, TV, picking up, etc.). It's never fun to nag or discipline them, but more often than not, the results speak for themselves. With all that we've been through these last few months, neither Susan nor I had much fortitude to really be the kind of parents we can and should be. I guess if I needed an Incomplete in my coursework this past semester, and Susan needed to adjust her work schedule, we need to realize that our parenting is incomplete and has needed an adjustment as well. Given how important parenting is for both of us, that has been a challenge and we have often (in case you haven't noticed) been at the end of our rope. Hopefully, in these past couple of weeks, we've been able to tie a knot and are working our way back into a parenting groove.

Posted by Susan at 09:10 PM | Permalink | Comments (2)

1:00 PM (Susan posting): Randall is at Duke today working on research to write the 35-page paper he has to submit to finish his incomplete from last semester. I had a productive morning here at home. We had Dawn helping out with child care this morning, but she just left to work the afternoon at Countryside. She'll come back after work tonight so Randall and I can go out to celebrate. Today is our anniversary: 7/6/96--nine years! A couple of years ago on our anniversary, we were talking and reminiscing, and I lovingly said, "Randall, these have been the best six years of my life." He looked at me and said, "Susan, we've been married for seven years. Which year was the bad one?" We've laughed about that ever since.

Posted by Susan at 01:11 PM | Permalink | Comments (4)

8:45 PM (Randall posting): We're doing pretty well to get the girls bathed and in their rooms by now! Granted, neither one of them is asleep, but it is satisfying getting them in bed closer to their usual bedtime (8:30PM). Today was a day at home for me and the girls, Susan went in to work. The usual stuff (television, Clifford soup, and lots and lots of playing together and the occasional argument).

The greatest tragedy of the day was when the two girls seriously banged their heads together while playing (literally, not figuratively, which is usually the case). Both were crying and holding their heads. It was hard not to laugh. I got the two of them some ice for their noggins and told them that I was glad I had two hardheaded girls. They both laughed and all was right with the world again.

The latest Sophie mini-drama was that she was apparently constipated for most of the day today. If I took her to the potty once, I must have taken her a hundred times, with many, many false alarms. Of course, irony is no stranger to this household, so late this afternoon Sophie had a BM, only it wasn't on the potty. Since then, things have "settled down" a bit, if you know what I mean (and I think you do).

I've been thinking an awful lot about our situation of late. In the past month or so, it feels as if we've had enough time to fully grasp what is happening in our lives, and the normalizing process has taken hold enough that we are no longer forced to live in the moment.

One of the things that I've been thinking about has been how generous people have been towards us (and how needy we truly have been). When our friends loaned us their time-share for a couple of days for a much, much needed vacation, we quickly accepted their offer. While we were there, it was frankly kind of overwhelming that people were willing to give of themselves for us in such a fashion. And, of course, lots of people, from all over the country, have lifted us up in prayer, have contributed money to Sophie's treatment, and have otherwise offered a supportive e-mail or a kind word. It has been overwhelming, to say the least.

Anyway, my point is that it has been incredibly hard to be on the receiving end of such generosity. Much of it probably was not necessary (we have really good insurance coverage, so although we are facing some financial burdens with Sophie's treatment, we are in far, far better shape than most Americans). But whether it was necessary or not, people gave. We have tried to be diligent in thanking folks and if we have forgotten to thank anyone, we apologize and want to thank you now. The reality is, however, that we could never offer enough thanks, we could never possibly reciprocate in ways that would match what we have received, and therein lies the problem.

Why is it that we--needy, to be sure, but not overwhelmingly so--have found it so hard to just receive what has been offered in love and care and generosity? Someone suggested it might be pride, but I don't think that's the case. Rather, I think that as a society, we are conditioned to see gifts as part of some unspoken contract, a tit-for-tat even under the worst of circumstances. Whether or not the contract is fulfilled (and many times it is not), there is still the sense that if someone does something nice for you, you should reciprocate, even if it is just by saying "thank you." And, of course, our situation is quite unique. Not many of our friends or relatives or acquaintances will have needs quite like ours such that we might be able to give of ourselves in like manner.

I hope that what all of this rambling is pointing towards is the realization that we are learning to simply accept the generosity and gifts of others, in whatever way they come. We can never repay what has been given. We can never reciprocate in any true fashion. But what has been offered in love is slowly being seen not as part of some unspoken contract, but a genuine, unilateral outpouring of care and affection.

What I mean to be saying is that we have learned a lot, thus far, about grace--unmerited, unasked for, undeserved, unreciprocateable (if there is such a word), grace. Grace is sheer gift. And we have received such grace. And we have learned how "amazing" grace can truly be, and we are learning to recognize the grace that is and has been extended to us in other areas of our lives as well. Thanks be to God, the most generous giver (and gift) of all.

Posted by Susan at 09:19 PM | Permalink | Comments (3)

9:00 PM (Randall posting): Today was a very packed day. Susan left very, very early this morning because she has a proposal she's working on at work. It's right up her alley and she's very excited about the possibility of getting it. Ashley from church came by this morning and babysat with the girls while I ran errands (visiting folks, mostly, which has been the hardest part of my pastoral responsibilities to keep up with--I can write a sermon between 9PM and midnight, but I don't think the folks at the nursing home would appreciate me visiting during those hours!). I'm thankful that we have somebody to watch the girls every now and then so that Susan and I can try and meet some of the responsibilities of our jobs.

I'm not sure, but it sounds like Sophie had another hypoglycemia episode today. Ashley said that Sophie ate some soup earlier in the morning, but didn't really eat a whole lot around lunchtime. When she went down for her nap, she complained about feeling sick and convinced Ashley that she was about to throw up. Given all that we've been through, Sophie really means it when she says she's going to be sick, so I believe it. Sophie never did throw up, though, and slept for a couple of hours. Once she got up, she was fine (and had a snack or two, of course). The girls watched Scooby Doo and ran around the house for the rest of the day. Home Health care comes on Monday and we'll find out then how Sophie's counts are doing. Tuesday is her final treatment in this phase of the protocol, thank God!

Posted by Susan at 09:07 PM | Permalink | Comments (1)

9:15 PM (Susan posting): Today was pretty nice. I had worked a LONG day yesterday (I worked over 13 hours), but I finished the first draft of my proposal and e-mailed it to folks to review over the weekend. That meant I had nothing hanging over my head today. Randall got up with the girls this morning and let me sleep in past 9:30 (that was heavenly!). I got a few things taken care of around the house, and Randall had a church meeting and worked on his sermon. For lunch today, we went to Sonic (because we could eat in the car and not expose Sophie to infection). We realized it was the first time we had all four been in the car together since we came home from the beach, and it was nice. This is what we've come to that a trip to Sonic is an exciting family outing!

Sophie seems to be feeling well, and she ate well today. Her latest interesting speech quirk is that she is pronouncing words funny. It started when she began pronouncing the word "butt" (a funny word in itself, really) as "boo-ut" (as in, "I'm lookin' at your boo-ut!"). Now she's turning lots of one-syllable words into two syllables, with the first one having the "oo" sound. Tonight she asked me to read her a "boo-uk." I don't know if it's a strange new southern accent she's developing, or if she's just being weird.

Randall's practicing his sermon, the girls are in bed (but not quite asleep yet), I've knitted a few more rows on the scarf I'm making, and all is right with the world.

Posted by Susan at 09:24 PM | Permalink

10:00 PM (Randall posting): Another full Sunday. Our major excitement for the day has been that my friend from Duke, Ashley, came to visit and brought another Duke friend with her (Molly). Ashley recently graduated from Duke and has just been commissioned to serve as a missionary intern in Bethlehem, which is just too cool for words. It was great visiting with her and seeing her again before she goes off into the real world. Elisabeth in particular was very sad when it was time for Ashley to leave. Ashley often babysat for Susan and me when we lived in Durham and Elisabeth grew to be quite attached to her.

Ms Dawn stayed at home with Sophie this morning while the rest of us went to church (Sophie's counts are undoubtedly still very low, but we'll know for certain what they are tomorrow). This evening, Ms Dawn stayed with both girls while Susan and I went to Bible Study and out on our date night. We got home not too long ago.

This week will be a big week for all of us. Sophie will wrap up this round of chemotherapy on Tuesday (vincristine and methotrexate in her IV and a methotrexate spinal tap). Elisabeth has swim lessons all week, and dance and piano lessons on Tuesday. Susan has her proposal that is due on Tuesday. Sounds like we'll be packing a week's worth of living in the next two days. Thankfully we have had a relaxing, restful weekend to store up whatever we'll need to get through these next few days. Keep us all in your prayers!

Posted by Susan at 10:06 PM | Permalink

8:30 PM (Randall posting): As anticipated, today was a busy day. Ashley from church (different from Ashley from Duke) came early this morning to stay with the girls while I worked on a variety of chores (mostly preparing for worship on Sunday and sorting through all the material I collected last week for my 35 page paper). Susan had been long gone by the time the rest of the house woke up, and she put in another long day today.

The Home Health nurse came this morning as well, and she did bloodwork and helped with the dressing change (always traumatic, no matter what). Sophie's counts came back this afternoon, and they're holding steady. Her ANC is still right on the borderline of being worrisome, but that's where they've been for a while.

Because her counts are where they are, she'll get the same dosage of methotrexate tomorrow that she received the last two visits to the clinic. Tomorrow she will also receive vincristine and--don't tell her--a spinal tap with methotrexate. She's awfully worked up about the spinal tap, but I don't know what else to do other than to keep reassuring her that it's necessary to keep her well and that because she'll be asleep (this time), it won't hurt. We'll see how she does tomorrow with all of that!

Elisabeth did her first swim lesson today and did really, really well! Mostly, I think she was excited about seeing friends from school (Haley, Sarah, and Megan) who are taking lessons this week as well. Elisabeth was not exactly the best swimmer in the bunch, but by the end of the time, she was actually propelling herself in the water (underwater even). I was really proud of her and she was proud of herself, I could tell.

Tomorrow is a big day for all of us. I'll be taking Sophie to the clinic for her last visit in this phase of the treatment, Susan will stay home and worry and fret over her proposal (due tomorrow afternoon), and Elisabeth has swimming, piano, and dance back-to-back-to-back.

When is the weekend?

Posted by Susan at 08:42 PM | Permalink

12:00 PM (Randall posting): Just a quick update to say that Sophie and I have returned from the clinic. We got there pretty early and were #2 for sedation. As expected, Sophie was not interested in going into the treatment room, but where there is a will there's a way. The anesthesiologist brought out a little something for Sophie to make her drowsy and then while we distracted her, we brought her into the treatment room where she was hooked up to the serious stuff. A few minutes later, the spinal tap was done and she was acting all loopy and silly. "It's too bad they didn't get to give me a shot," she said. Indeed! The other drugs were comparatively easy (a drip and an IV push), so we got out of there quickly. Sophie has lost almost three pounds in the last couple of weeks, but the staff didn't seem too concerned about it. I figure if you eat nothing but Clifford noodle soup (all day, mind you), you'd lose weight too.

Posted by Susan at 12:09 PM | Permalink

8:00 PM (Randall posting): The girls are in bed (early), but it's been a long day. Elisabeth in particular was wiped out after swimming lessons today and was pretty much worthless all afternoon. Sophie has seemed a little cranky/tired since yesterday (although less so today than yesterday). I attribute that either to the treatment yesterday or simply to the whole experience of going to the clinic early and going through the trauma of it all. Ashley from church came again today and sat with the girls while I ran errands and did some visiting and reading for sermon preparation.

Elisabeth continues to progress in swim lessons. Today's big accomplishment was treading water. I'm really proud of her for progressing as quickly as she has. Tomorrow is the last day and afterwards she'll be going home with a friend of hers from school (Haley). She's really, really looking forward to that!

We have been thinking for some time now that Sophie's hair might be growing back. She's still clearly losing hair (it's very thin towards the front), but underneath the long hair that's left, there's fine, downy stuff growing out. It's a little sign, I guess, that in spite of all that she has been through, her little body is fighting a good fight and struggling to grow and survive. Personally, although we are thrilled to be done with this latest phase of her treatment, it doesn't feel as if there is much down time. Sophie may start the next round (delayed intensification) as early as July 26th, which is sooner than it feels like it should be.

Posted by Susan at 08:15 PM | Permalink | Comments (1)

9:00 PM (Randall posting): Today's meal of choice (for Sophie) has been cheese grits. Cheese grits, cheese grits, and more cheese grits. On top of that, she ate Jimmy Neutron soup, popcorn, cereal (with milk), and, of course, orange juice. I'd say that her taste in food has rebounded in a big way! Tonight she ate pizza and actually ate some of the pizza instead of picking at it like she usually does. It's been a good day at home with Sophie.

Elisabeth had a blast at her friend Haley's house today. When Laura (Haley's mom) came to pick Elisabeth up this morning, I thought Elisabeth was going to burst into tears she was so excited. The one thing Elisabeth insisted on taking with her was her latest American Girl catalog. As soon as Laura saw Elisabeth carrying that catalog, she said, "Haley's been toting that around for the last two days!" Birds of a feather.

Sophie's latest funny things include saying "I don't know about [fill in the blank]" regardless of whatever the topic of conversation is. "I don't know about dancing." "I don't know about cheese grits." "I don't know about pizza." You get the picture. No idea where that is coming from, because clearly she knows a lot about a lot of those things. We've been having storms in the afternoon lately, and Sophie has taken a dislike to "under" (thunder).

Posted by Susan at 09:23 PM | Permalink | Comments (2)

8:00 PM (Susan posting): It's been a pretty good day today. I stayed home today and only had to do about an hour of work, so it felt like a Saturday. Having a whole extra Saturday tomorrow feels like such a luxury. The girls have done well together. Sophie seems a little tired and gets upset really easily, especially for the last hour or so. She just had her bath, and we still need to do a cap change (with saline and heparin) for her chest catheter tonight (we do saline and heparin on Monday, Wednesday, and Friday, and we do the cap change on Monday and Friday; the dressing change is just on Monday).

Elisabeth is still wearing the little ballet outfit she borrowed from Haley yesterday. She wore it to bed, and she's worn it all day. We may never get her out of it! We also learned during our visit to Haley's that Haley and her little sister Hannah can both ride a bike without training wheels. This inspired us to get out Sophie's bike (which is too big for her but a little smaller than Elisabeth's) and take out the training wheels. It touched my heart to see my husband helping Elisabeth ride around in the yard. It will take some more work, but I don't think it will be too much longer before she's riding on her own.

I hadn't realized how much we talk about food until I read Heidi's comment, so I won't disappoint. We got three bags of corn from a church friend, so we'll be spending lots of time freezing it tomorrow. The girls love corn! We also made a new recipe tonight. It was on a bag of ready to cook hash browns, and I tinkered with it to make it even better. A friend from work gave me a back issue of Cook's Illustrated that she had two copies of, so I'll probably be inspired to cook some more new things next week, especially when we're visiting my mom and grandmother at the end of the week (that is, if we can convince mom to take a break from zucchini). We're really looking forward to the trip.

Posted by Susan at 08:24 PM | Permalink | Comments (1)

7:15 PM (Susan posting): I asked Randall just now what I should say in today's update. His response: "For sale--two children, slightly used." They do drive us a little crazy, but they sure are good kids most of the time, and we couldn't love them any more than we do. Sometimes, I look into their eyes, and my heart just swells.

It's been a pretty good day--a hot one for sure. Sophie actually slept in a bit this morning (7:30) and took a good nap. We've been arguing with Elisabeth most of the day about cleaning up her room, but she's made some progress. My mom would say this is karma, given the state of my room most of the time I was growing up (it's neat as a pin now, I swear, and you should see my tidy office).

Food update: Randall grilled a really good marinated pork loin, and I made some green beans with one of my new recipes. We're going to have some ice cream for dessert (but not Sophie, who doesn't like how cold it is). Whenever Sophie eats now, she says "My counts are getting higher!" She's a little confused about low blood sugar versus low blood counts, but at least she knows she needs to be eating.

Posted by Susan at 07:23 PM | Permalink | Comments (2)

10:30 PM (Randall posting): Susan and I are home from our date night (and grocery shopping). Ms Dawn is moving away next weekend, so we're not sure what we're going to do about our regular Sunday-night-after-Bible-Study-date-night after next weekend. We have been so thankful to have the regular opportunity to spend some time together as a couple.

I never know what to post on Sunday evenings. Our Sundays are so routine that there is often not much interesting to say. Sophie continues to eat very, very well (we needed to buy some more cheese grits tonight). She is, as always, her playful, cheerful self. With Susan having some free time on Friday, it has felt like an extended weekend this week, which has been nice. It's hard to believe that July is more than halfway over, and the summer is racing to an end. It's especially hard to believe when it is as hot as it has been this week.

We are looking forward to spending some time with Susan's mom and grandmother this week. It has been a long, long time since we went to visit them in Virginia. Elisabeth and Sophie are excited to see their Grammy and Nannie as well. We're hopeful that whatever Sophie's counts are, she'll remain strong enough to travel and won't pick up any sort of infection before, during, or after our trip.

Posted by Susan at 10:28 PM | Permalink | Comments (2)

7:30 PM (Susan posting): It's been a full and satisfying day. We didn't manage to arrange anyone coming over to help with the girls today, but it seemed to work out fine. Randall spent most of the day visiting church members (one in the hospital in Chapel Hill), and I spent the day trying to finish up an article submission with a work colleague. The girls were mostly cooperative with giving me time to concentrate. We even got some play time in this morning.

Sophie is doing well. She's in a good mood and continues to eat well (5 packages of cheese grits today I think). We also did her dressing change after bath tonight, and it went incredibly well. We had been talking about it several times today, so it didn't come as a surprise, and when she asked me whether it would hurt, I told her it would hurt, but I would be as gentle as I could. When the time came, she wasn't the tiniest bit upset and said she wanted to pull off the old dressing herself (that's what always makes her cry the most). She pulled it right off without shedding a tear. She fussed a little bit when I cleaned the area with alcohol, but she definitely wasn't crying. Before we knew it, the new dressing was on, and we were finishing up the cap change. We're so proud of her. She's such an amazing kid!

Posted by Susan at 07:34 PM | Permalink | Comments (2)

9:00 PM (Susan posting): We had a nice day at home together as a family. Randall and I both took care of a bunch of little things (mine were mostly work-related, and his were mostly home finance-related), and it was very satisfying to get things arranged before the trip. Another thing Randall did was to copy several of his recorded sermons onto CDs for my mom and grandmother to listen to (they had asked him to do that).

As I heated up yet another bowl of cheese grits for Sophie's bedtime snack, I realized that she has consumed an entire box of instant over the last two days. Sometimes she eats three packages at a sitting. And she's not even on steroids yet. Heaven help us when she is.

We will try to update Sophie's weblog from my mom's computer while we're away. Please keep us in your prayers for safe travel and Sophie's continued good health. We're hoping she won't develop a fever or other signs of infection that would require a hospitalization while we're gone.

Posted by Susan at 09:07 PM | Permalink | Comments (1)

9:15 PM (Susan posting): We're posting from Virginia! We were very disciplined last night and did most of the packing. We slept in until about 8:00 this morning and were loaded up and out of the house by 10:00. We stopped for lunch and arrived at mom and nannie's just after 2:00. We had a nice afternoon, and Sophie may or may not have taken a nap (she was in bed, and it was quiet, but she wasn't there for long). The girls have been showing off all day and seem very happy to be here. (And so are we!).

Posted by Susan at 09:17 PM | Permalink

10:00 AM (Susan posting): Yesterday was a good day (with the exception of Randall's terrible headache, which took him out of commission most of the day). The girls had a couple of visitors, and they played most of the day. Sophie took a long nap and seems to be doing well. She's really enjoying food fresh from the garden. Last night Randall and I went out while the girls stayed at home with Mom and Nannie. We saw Charlie and the Chocolate Factory (which we both really liked), and then we went out to dinner (which we also both really liked). We made it home before the girls went to bed, and then we hung out talking to Mom until it was out bedtime.

We've been having a lazy morning. We slept in a little bit today and just finished brunch. It's really nice to have no particular responsibilities and just relax.

Posted by Susan at 10:09 AM | Permalink

8:16 PM (Randall posting): We are home from our trip to Virginia. Seems like we were there for weeks. I guess that means it was restful and much-needed! It was a great trip and really good to see Susan's mom and grandmother, who is in declining health. A handful of neighbors (who remember Susan when she was Sophie and Elisabeth's age) stopped by to visit, and that was nice as well.

Our trip home was as eventful as any in recent memory. This morning as I was packing up the car, I noticed that our portable DVD player was not in the car. Unfortunately, we had not moved it into the house and sometime during the night, someone came up to the house and stole the DVD player, several DVDs, our CD case with nearly two dozen CDs inside, and (most outrageous of all) a can of Pringles. We were way out in the country and never thought that locking the door was a necessity, but there you go. It just goes to show you that you can never be too cautious (unfortunately). It was not a good idea to leave the car unlocked, but if they really wanted what was inside (the Pringles) they would have broken a window, I suppose.

So, our drive out of town included a stop at Target where we picked up a new portable DVD player (nice to have on car trips but especially nice to have for clinic visits). Susan bought the girls some popcorn and strawberry milks at Target as well. Back on the road again, about an hour into the drive, Elisabeth started to complain about a stomach ache (not a good sign). I asked if we needed to stop at the next major town (Danville) or if we could wait another twenty minutes or so. Elisabeth insisted she could make it another twenty minutes. She made it another nineteen and a half minutes. As we were pulling into the McDonald's parking lot in Yanceyville, North Carolina, Elisabeth said she was going to be sick. I got her window rolled down just as I pulled into a parking spot and THANK GOD for power windows--half a bag of half-eaten popcorn and twelve to sixteen ounces of curdled strawberry milk poured out the window and down the side of our brand new car.

We got Elisabeth (and the car) cleaned up, got some fresh air, took a potty break, threw out the rest of the popcorn and Sophie's strawberry milk and traded them for some waters and went on our way. Elisabeth seemed to do okay for the rest of the trip, but she complained every now and then about stomach upset.

We stopped in Garner (just outside of Raleigh) for dinner and ate at Chili's, thinking a sit-down meal might be better for Elisabeth than fast food. We sat down, ordered our meals and waited hopefully for a smooth evening. At one point, Susan acted like she was about to sneeze (closed her eyes and held her hands up to her face). I thought I would be cute and reach across the table to spook her. Well, let's just say I really spooked her, because my hand caught the top of a fresh, full, cold glass of ice water, which cascaded quickly across the table right into Susan's lap.

She screamed bloody murder. For a long. Long. Long. Long time. Fortunately, the servers heard her screaming and several came to attend to us. Also fortunate was the fact that since we were traveling, Susan had a change of pants in the trunk of the car. We haven't laughed so hard in the longest time. I'm sure the girls were wondering why we don't laugh so much when they spill a drink, but it was all so hilarious (the screaming in particular) that we all got tickled. I'm certain that everyone in the Chili's in Garner (and maybe in the McDonald's next door, or maybe even in the Best Buy further down the road) heard Susan scream and the rest of us break into hysterics.

The rest of the trip home was pretty boring by comparison (thankfully). Cats were fed when we got home, house was still standing, air conditioning worked. We got unloaded and started to get settled. I've got a sermon to finish up and bulletins to print up for tomorrow morning, but I suppose after what we've been through today, a normal Saturday evening sounds pretty nice.

Posted by Susan at 08:39 PM | Permalink | Comments (1)

9:00 PM (Susan posting): We've had a very good day today. Sophie and I were homebodies while Randall and Elisabeth did the church thing. I told Sophie that we would get to stay home together while Daddy and Elisabeth went to church, and I managed to make it sound exciting enough that she didn't mind when they left. We enjoyed our time at home, and before we knew it, they were home. I spent most of the day packing away lots of things in Elisabeth's room. She now has a much more manageable amount of stuff. I worked in Sophie's room too, but we still have some things to put away in there too. I wanted to make room for some of the new toys the girls received from my stepmother Eileen's co-workers. One of the nurses she works with has a daughter who survived cancer, and she wanted to return some of the generosity shown to her family during their tough times. It was just the right balance of identical toys for both girls (so they wouldn't argue) and individual age-appropriate toys and gifts. The girls were thrilled, and we were touched. It was yet another moment of grace shown to us as we are preparing to face a very intensive phase of her treatment.

After dinner tonight, Sophie and I stayed home again (we watched "The Incredibles") while Randall and Elisabeth went to the first night of Vacation Bible School. Tonight was the kickoff and lessons will begin tomorrow. It sounds like they will have a nice manageable number of kids.

Tomorrow, the home health care nurse will come to draw blood and help with the dressing change (although Sophie has already said she wants to pull it off herself again--Amy will be quite impressed, I think!). We'll find out in the afternoon whether her ANC (Absolute Neutrophil Count, which is based on the white blood cell count) will be high enough (.75) to begin the fourth phase of treatment on Tuesday. She seems unusually pale and has a fair number of bruises, so I suspect her counts will be too low. On the other hand, her energy level is high, she is in a great mood nearly all of the time, and she has a really good appetite (six bowls of cheese grits today, in addition to quite a few other things). Her other surprising physical development is that she can roll her tongue. Randall is particularly proud of that, since he can do it, but Elisabeth and I can't. Ah, the wonder of genetics.

Although we're eager to move forward with treatment, we're also dreading the number and complexity of medicines (and associated side effects) that come with this phase of treatment (called "delayed intensification"--I'll post the medicines and schedule once she starts). This may be when she finally loses all her hair (which would be unfortunate, since what she had lost is now starting to grow back in).

Posted by Susan at 09:03 PM | Permalink

2:40 PM (Randall posting): Just got off the phone with the clinic. Sophie's counts are still borderline. Actually, her ANC is just under the cut-off to begin the next phase of treatment. Dr. Gold suspects that they are rebounding (based on his reading of the monocyte count, which is pretty high, suggesting that her body is ready to begin producing the white blood cells that would raise her ANC levels). So, we'll go early to Chapel Hill in the morning, draw another blood sample and check then to see if she is high enough to proceed. We've done this once before, but the counts weren't high enough. We'll see if tomorrow will be any different.

Posted by Susan at 02:42 PM | Permalink | Comments (1)

11:00 AM (Randall posting): Susan and Sophie (and I) woke up early this morning so the two of them could get ready for the clinic visit. It turns out that Sophie's counts are still too low (the ANC actually dropped from 0.6 to 0.5, and it needed to be at 0.75 in order to continue the treatment). Unfortunately, that means that Susan made a trip to Chapel Hill for nothing. Fortunately, it means that we have another treatment-free week, so it is all a mixed blessing.

Taking a risk, Susan brought Sophie to VBS last night. She had a great time and everyone was happy to see her. I suspect that with her counts where they are, Sophie is fine with some exposure to small crowds of people, even if the counts are not strong enough to move forward with the next phase of treatment.

As we look forward to this next phase, I've discovered a serious drawback to learning how to live for the moment and live for today: when change comes (as it inevitably does) you don't always know how to handle it. I think we have definitely learned to "roll with the punches" a lot in these past six months, and it has certainly stretched us emotionally, physically, and spiritually. But if all you ever do is "roll with the punches" you never anticipate the next punch, the next hurdle, the next pothole. Maybe there's more of a balancing act required here--keeping our heads up with our eyes on the horizon, but sensitive to what is going on right now, today, and tomorrow.

Posted by Susan at 11:06 AM | Permalink | Comments (1)

9:30 PM (Susan posting): We've had a good day today. Ashley (from church) came over to babysit the girls. Her brother Nick joined us later in the morning when their dad went to work. All the kids seemed to have fun together. I worked at home while Randall did some visiting and drove to Raleigh to pick up some books he had ordered. He and I met in Dunn for lunch and enjoyed eating together alone (that doesn't happen much any more). Then, while Sophie napped, I worked and everyone else went to swim in Enid's pool (she's Ashley and Nick's grandmother, also a church member). That was a great way to beat a hot day.

After her nap (3.5 hours today), Sophie was very crabby, bossy, fussy, and loud. She just didn't seem to be her normal cheerful self. Perhaps she slept too long, but I hate to wake her up. I'm also noticing that her eyes seem tired--they are often rimmed in red. Not sure if that means anything. She perked up once we got to VBS, and she showed off for everyone there. She didn't eat a lot for dinner, but she has consumed a lot of cheetos, grits, and Clifford soup, so I guess she's getting some calories. As has been the case every night this week, she is in her room right now, wide awake and tossing out occasional demands. It will probably be after 11:00 again when she finally goes to sleep. Perhaps we ought to try skipping nap one of these days and see how she does, but she's so clearly tired in the afternoon, it's hard to know what to do.

Posted by Susan at 09:37 PM | Permalink | Comments (1)

9:00 PM (Randall posting): Today was a day to try and re-establish some sense of a routine after Vacation Bible School. Susan went to work early this morning, Ashley and Nick came over to watch the girls and I ran some errands (paid bills, picked up dry cleaning, got the minivan washed--much needed). Elisabeth and Sophie really seemed to enjoy the visit from Nick and Ashley. When I came home, Sophie was napping and Elisabeth, Nick, and Ashley were playing Hi-Ho Cherrio (and Candyland, and Chutes and Ladders). It was fun. Later, Elisabeth and I returned those games to the building and got out Mastermind. It took some time, but Elisabeth quickly got the hang of that game as well--I remember playing that a lot in Middle School. Maybe Elisabeth will love logic games as much as her parents do!

One of the errands I ran today was a visit to Countryside, where Sophie was in daycare until her diagnosis. We'd like to have Sophie return there with a normal schedule once we get through these more grueling phases of the treatment. We're hoping that sometime this fall, she'll return to all her friends there. While I was there, talking through the phases of the treatment and the like, someone said, "you all have been through a lot." I am not sure what to make of that. We have been through a lot, but there are many, many others who have been through so much more. I am haunted by the bulletin boards at the clinic that have picture after picture after picture of kids who have been treated by the doctors at UNC for various forms of cancer. After a while, all those smiling, happy faces staring back at me get to me. These are all kids who have gone through the whole range of pain and suffering, and, I wonder, which ones lost the fight, because not every child gets well. We have had an easy road of this, and for that we are extremely thankful, but our hearts break when we hear about another child's setback or bad experience.

Susan updated me on one child who is also being treated at UNC--Macie Ann. Her website is here:
www3.caringbridge.org/nc/macieann/. Macie Ann has a different form of leukemia than what Sophie has, but, as rational and logical as you can get, cancer is cancer. And it can kill.

Another child (in our own community) named Madison Smith ( www.madisonsmith.org/ ) has been through all sorts of problems with her leukemia, but her family (and her church) are sponsoring a charity event for Duke's "Road to Life" for those families who struggle financially with the unbelievable burden childhood cancer and its treatments can bring. Maybe we'll get to go to the event (it sounds like it will be fun).

We are grateful for our terrific insurance coverage (although the paperwork alone gives us fits), we are grateful for all the support and prayers and thoughts that people have sent our way, we are grateful to be part of a community and a church that has loved us and gone the extra mile for us when we needed them, we are grateful that Sophie is doing as well as she is. But in our gratitude, we see so many others who suffer. Remember them, pray for them, support them, too. Please.

Posted by Susan at 09:20 PM | Permalink

9:30 AM (Susan posting): We realized at about 11:00 last night that we hadn't ever gotten around to posting yesterday. Nothing is wrong--all is well. We just had a busy, fun day. Ashley was here with the girls from 8-1, and then Sophie napped until about 4:00, so we were both able to work at home pretty well. Randall got some work done on his sermon yesterday, so we're hoping we can have a somewhat relaxing day today.

Just before 5:00 last night, we all got in the car and did some running around. We visited Enid, who is getting stronger every day. Then we had dinner and did a bit of grocery shopping. Back at home, we watched a couple of short movies with the girls and had fun together. We got both girls in bed well before 9:00 and had some time to ourselves before our own bedtime.

Sophie tried to pitch a big fit in the car yesterday just as we were leaving (the girls were arguing over a toy Elisabeth had brought). As their voices escalated, Randall turned the car around and told the girls that we were not going to go out if they planned to behave that way. As the car idled in front of the house, they pulled themselves together (especially Sophie), and we were on our way. They both did pretty well until the middle of the grocery shopping trip, when Sophie got upset about something and Randall took her out to the car for a little while.

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

7:45 PM (Susan posting): What a satisfying day we've had today. We took care of lots of chores around the house, and everything looks so nice. Late this morning, a friend from church brought a warm blueberry crumble, and we ate it right away with some ice cream. What a nice Saturday morning treat! One thing we did today was clean out a couple of drawers in the TV armoire, and we discovered some pictures from when we first moved to North Carolina. Sophie was just a few months old, and I loved seeing the girls at that age. I was reminded of how dark and thick Sophie's hair was when she was born.

Sophie has had two time-outs today, and we've had a few talks with Elisabeth today (nearly all about sharing, or more accurately, the lack of it). Both girls have gotten baths, and we're going to watch another Wallace and Gromit movie tonight before the girls head to bed. Randall finished his sermon earlier today, so he'll practice a few times after the girls go to bed, and then we'll have some time to relax together.

Posted by Susan at 07:48 PM | Permalink | Comments (1)

10:00 PM (Randall posting): One of the occupational hazards of being a minister is that by Sunday evening (the end of the weekend), I end up feeling the way most people do on Friday--exhausted and looking for the first opportunity to come up for air. We've had a good weekend. Today was busy, as usual, but in a satisfying way. Ashley from church has become our new Sunday evening babysitter, so Susan and I were able to go out for date night after Bible Study. I had a wild hair to get something for the house, so we ended up going to Lowe's and Home Depot before going out to eat, but we had fun doing it, so there you go.

Sophie and Elisabeth are doing well. Elisabeth and I had tickets to see a member of our church perform in a play in Clinton (about 20-30 minutes south of here). Technically speaking, the tickets were for Elisabeth and whichever adult drew the short end of the straw to take her there, but Elisabeth insisted that I get to go with her. After all, the last time Elisabeth went to a show (Swan Lake in May, I think), it was Susan that got to go with her. And, as Elisabeth suggested, I should get to go as a reward because I'm such a good preacher. Just when my heart began to swell and pride welled up in my soul, Elisabeth continued, "not that I listened or anything, but I know that you practiced." From the mouths of babes. . .

Sophie has had lots of energy (and attitude). She must be feeling pretty strong. Her appetite has grown, as has her range of culinary interests. She asked for oatmeal while Susan and I were away this evening. I happen to know for a fact that we haven't made oatmeal for her in months, but that's what is on the menu for tonight (and probably tomorrow, and the next day, and the next day).

Home health care will come tomorrow morning (I assume) to draw blood and help with the dressing change. I'm assuming that Sophie's counts will be strong enough to resume treatment on Tuesday. If that's the case, I'm sure Susan will create a handy-dandy chart for everyone to get a sense of what we're up for this time around. Depending on how early we're done with the nurse, I may take Sophie to Countryside for a visit. It's been a while since she's been back and I'm sure she'll want to reconnect.

Thanks to everyone who follows up with all of this. I was just thinking today that maybe we should switch to weekly updates rather than daily. I can't imagine that our daily routine (such as it is) is all that interesting. Then again, with this next phase of chemo kicking in, it might be helpful to give daily updates. Anyway, thanks for all the support and encouragement and thanks for all your comments.

Posted by Susan at 10:11 PM | Permalink | Comments (3)