Sophie's World

2:30 PM: We're having a good April Fools Day. Sophie did wake up a bit on the crabby side and seemed tired. She asked for the "bucket" once (to throw up in) but didn't need to use it. Later in the morning, she and Elisabeth did lots of dancing and looked so cute. Elisabeth and I went out to lunch and did a quick grocery trip while Sophie played with Grammy. Sophie is finally taking a much-needed nap. Randall is at school today and just finished taking an exam he spent lots of time studying for. This afternoon, he's preparing a sermon he will preach in class next week at the Duke Divinity School.

Yesterday's amusing comment from Sophie came when we told her she needed to take her Miralax (no poop for the last 2 days), and she said, "I'm sleepy of the Miralax!" Don't sleepy and tired mean the same thing? Out of the mouths of babes....

Posted by Susan at 02:27 PM | Permalink | Comments (1)

8:00 PM: Sophie's had a good day at home today. No health incidents, which is wonderful. She looks pale, but that's not surprising. Although her hair is definitely thinning around her face, the rest of hair is still so thick, you can't tell she's losing any, especially the way it lays (the thick parts cover up the thin parts). The emergency room staff commented that she certainly doesn't look like a kid with Leukemia, so we should be sure to mention it in Triage so that they prioritize her case properly. She has everyone in the ER wrapped around her little finger--she's such a charmer.

She has now finished the first 28 days of treatment in this second course of chemotherapy (five courses of arying lengths). She'll have a blood test on Monday to see if her counts have recovered enough to repeat the 28-day regimen. If her ANC is at least .75, she'll go back to the clinic on Tuesday, which will involve a spinal tap and cytarabine (this is the one that can cause kidney damage, so she has to be there all day while they pump her full of fluids). Last month, before she took the cytarabine, there was blood in her urine (they suspected a bladder infection, but later determined that she didn't have one), so it took a long time to begin the medicine, and we were there very late. We hope to have better luck this time.

Posted by Susan at 07:58 PM | Permalink | Comments (3)

9:53 PM (Randall posting): We all had a really good day today. Mom, Susan, Elisabeth and I went together to church, while Sophie stayed home with Ms Dawn from day care. After church, we all had lunch (pasta) and we all had "quiet rest" or napped. Sophie napped on the couch, which is where she usually takes naps these days.

We played this afternoon and I cleaned up the new office in the parsonage. Sophie enjoyed walking in and out of the office, although she insisted on wearing shoes while she did it. Elisabeth and Sophie had a tea party and otherwise had a great time playing and interacting. Now that Sophie's verbal skills are getting so strong, they occasionally play very well together.

Susan and I had Bible study at church this evening while the girls stayed at home with Oma. The major excitement for the evening was that Sophie apparently pitched the biggest fit about going to bed. She kept insisting that she needed to go to bed on the couch, but Oma didn't fall for it--she's tried that on Susan and me a few times, but it doesn't work on us either! The girls are now sleeping soundly. No matter how much they fight going to bed, they always seem to lose!

Tomorrow will be a big day for us. Elisabeth sees the orthopedist tomorrow afternoon (her hand still seems to be bothering her some, but her foot seems fine). Sophie will get a blood draw tomorrow and if her counts are not high enough (ANC > 0.75), we will wait a week for the next treatment. Our next clinic visit will be a major one, so nobody will be disappointed if we have to wait another week!

Posted by Susan at 09:59 PM | Permalink

6:15 PM (Randall posting): The word today is that Sophie's counts are not high enough to administer chemotherapy this week. Unfortunately, they are so low (at least one of them, the hemoglobin) that Sophie will require a red blood cell transfusion. Whenever Sophie is transfused, she needs specially screened and irradiated blood, and that is something that needs to take place in Chapel Hill. So, we will be going to the clinic after all. The red blood cell transfusion usually takes 2-3 hours once the cross and type are verified. Once we're through with that, we'll be good to go. Another early morning drive to UNC is on the agenda.

Elisabeth just got back from the orthopedist and the news is mixed. Her foot is fine, which means she will not have to wear the boot any more. The little finger on her left hand is definitely broken, and she will need to wear the splint for another 6-8 weeks. She seems so thrilled about being free from the boot, I don't think she minds having to wear the splint (but she's not happy about having to wear the splint at night).

Posted by Susan at 08:21 PM | Permalink | Comments (2)

2:53 PM (Randall posting): Sophie, Susan, and Oma came back from the clinic a short while ago and Sophie is trying hard not to take a nap. An uneventful trip to the clinic, with only a red blood cell transfusion on the agenda. Mostly, it was just waiting around for the blood to arrive and waiting for the transfusion (it is done over 2 1/2 hours). Hopefully this will perk Sophie up and her counts will rebound. We're thankful to have a break from chemo, but we'd like to keep things moving along as much as possible.

Posted by Susan at 02:54 PM | Permalink | Comments (1)

8:00 PM: We were very brave today. Since Sophie didn't have chemo yesterday (and therefore wasn't likely to encounter any health problems), I decided to go to work so I could attend some meetings in person, while Randall went to class all day. Elisabeth was at school, so Karin tended to Sophie all day (and managed to get a lot done around the house as well!). They had a good day, and Sophie felt well. They played outside in the morning, and Sophie took a 2.5-hour nap this afternoon. The girls are watching a movie while they polish off some birthday cake I brought home from work. It is wonderful to have so much help and support around the house. We really need to work on getting a nanny to watch Sophie while we try to work at home during the day.

Posted by Susan at 08:07 PM | Permalink | Comments (2)

7:45 PM (Randall posting): We've had a good day today. Susan left early this morning to get in some good hours at work. Elisabeth spent the day at school and I spent the day running errands (hair cut, oil change, car wash, post office, paying bills--funny how I don't feel like I've accomplished much today). Oma tended to Sophie (Princess Sophie as Her Royal Highness is now accustomed to being addressed) and straightened up around the house. We picked up a pizza for dinner and after dinner we all went for a walk on the dirt path next to the house. Sophie enjoyed getting out doing things and although she is quite pale and weak-looking (especially with her ever-thinning hair), I'm sure it is good for her to do things like going out for walks.

Thanks to all of you for posting your encouraging comments. It means a great deal to us that people are checking in every now and then and remembering our family. Blessings!

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

10:20 PM: We're enjoying our last full day with Oma. Sophie seems to be feeling well, and we decided to go out for drive-through fast food for lunch while Randall and Elisabeth were at school. Randall and I had plans to go out to dinner together tonight, but when it was time to go, Elisabeth pitched a major fit and didn't want us to leave her (that made Sophie upset too, so we had two hysterical kids). Instead of leaving that second like we should have, we tried to comfort them, which made it worse. Sophie didn't stay upset for long, but Elisabeth was just beside herself. We ended up leaving in one of her quieter moments, but we felt terribly guilty (even though we knew we were doing the right thing by going--any other decision would have sent the wrong message). Of course, just minutes after we left, Karin had them laughing and having a picnic on the living room floor, so we then felt free to enjoy ourselves (which we did!).

Posted by Susan at 10:26 PM | Permalink

9:15 PM: It was a full day today. While Randall finished up his sermon for tomorrow (he'll also be preaching it during worship at chapel in the seminary building at Duke on Wednesday), Elisabeth and I took Karin to the airport. Sophie stayed with Randall, because we wanted to do a bit of shopping, and we don't know if Sophie's counts are good enough for her to be around people. We left late morning, had some lunch, and bought some cute clothes for the girls. We got Karin dropped off in plenty of time to catch her flight, and then Elisabeth and I did a bit more shopping (mostly to get decent fresh-roasted coffee). I was pretty wiped out by the time we got home.

Elisabeth has decided she wants her hair to look like Kit's hair (she's an American Girl doll). So, after her bath tonight, I cut her hair (probably about 5 inches). It looks pretty much like Sophie's, although her hair is tricky to cut because it has a few wavy pieces that shorten up when it's dry. She had been growing out some of her bangs, so I cut the sides to blend those parts in. Now she wants to grow all her bangs out, so we'll definitely have an awkward period until they get longer. After it was cut, I blow-dried it, and then curled the ends with a curling iron. We'll take some pictures tomorrow after she's dressed for church.

I checked my e-mail tonight and got a message from our good friend Shelli. I already knew I wasn't operating at 100% capacity, but she was writing to let me know that I had sent her a thank-you note for a gift she didn't send the girls. Of course, now I have absoluely no idea who sent Elisabeth and Sophie the Angelina Ballerina book and American Idol Barbie, so if whoever sent those wonderful gifts to the girls is reading this, please accept our thanks! It feels like I may never think straight again! I owe a few other people thank-you notes, but there's no telling whether I'll be thanking you for the right things!

Posted by Susan at 09:15 PM | Permalink

7:40 PM: Sophie and I hung out at home this morning while Randall and Elisabeth headed off to church. Randall felt like his sermon went well, and Elisabeth got lots of compliments on her new haircut. Randall's had a bad headache all day, so it's been a quiet day at home. The girls and I played outside for about an hour while Randall went to Bible study tonight. They play so well together, and Elisabeth has a great imagination. Sophie fell a couple of times but doesn't seem any worse for the wear.

Posted by Susan at 07:45 PM | Permalink | Comments (1)

8:40 PM: Randall and Sophie were together at home today while I went to work (Randall skipped his one class today--too tired for the drive to only be there for an hour). The home health care nurse came today to draw blood and helped Randall change Sophie's dressing (traumatic, as always). The nurse practitioner from the clinic called to say that although most of Sophie's counts are up (so she doesn't need any transfusions), her ANC is still just under where it needs to be to begin the next 28 days of treatment (the level is .6, but it needs to be .75). Because this next phase of treatment doesn't involve any spinal taps (which have to be done in clinic on Tuesdays when the anesthesiologist is there), they want us to bring her in early on Wednesday. They'll do another blood test, and if the ANC is high enough, they will administer the scheduled dose of chemo, and we can begin the injections we give her at home. What they'll be giving her at clinic this week is Cytoxan--this is the one that can cause kidney damage, so we have to be there all day so they can get her hydrated and keep an eye on her (assuming we don't have to turn around and come home because her ANC is still too low).

We took advantage of Sophie's higher ANC count to go out to dinner at Cracker Barrel (if it's above .5, the risk of infection isn't as high). We really enjoyed ourselves and have had a nice evening.

Posted by Susan at 08:39 PM | Permalink | Comments (3)

7:45 PM: It's been an uneventful day. Randall and I both worked at home today (I figured driving in to work and/or clinic four days in a row might be a bit much). We're working on getting Sophie to drink a lot tonight (and in the morning) so that when we get to clinic it won't take too long to get her hydrated enough for the chemo (assuming her counts are high enough in the morning). Randall is preaching during worship tomorrow, so he'll spend some time tonight practicing his sermon. Since I didn't get to hear it on Sunday, I hope he'll practice in front of me instead of going into the office.

Posted by Susan at 07:48 PM | Permalink

11:20 AM: We're back from the clinic. We arrived just after 8:00 this morning (lots of traffic with the drizzling rain we're having), and they took a blood sample. There was no change in her ANC from Monday (it was still .6, and it needed to be at least .75), so we will wait until next week to see if her counts are high enough to proceed with chemo. She fell asleep during the last 20 minutes of the ride, so I carefully brought inside and laid her down on the couch, but I can hear her humming in the other room, so I suppose I'll pull together some lunch and see if I can get her to take a nap after a little while. I could use one myself!

Posted by Susan at 11:27 AM | Permalink | Comments (1)

8:00 PM: Sophie and I both took a long nap today (I slept for about two hours, and she slept for three). Elisabeth stayed with our friend Shannon after school today, since we weren't sure yesterday how late the chemo might go. Even though I was home this afternoon, we let Elisabeth go spend time with Shannon's girls, because she would have been disappointed not to go (thanks Shannon!). Randall's evening class was cancelled, so he was able to come home in time for dinner. It's nice to sit together at the table (even if we're just eating leftovers!). Randall is giving the girls a bath, and they will head to bed soon.

Randall's sermon during worship at Duke today went very well. He said he was very nervous, but he got lots of positive feedback after it was over. His stress level was pretty high today, so we are looking forward to relaxing tonight.

Posted by Susan at 08:13 PM | Permalink | Comments (2)

8:45 PM: It was a somewhat stressful day (though not due to any health events). Randall managed to find some time to file (electronically) our taxes today. That's stressful enough under normal circumstances, but there are days that we are just on our last nerve. Sophie was particularly demanding today, and, as Randall put it, she nearly drove him off a flippin' cliff. I had to leave for work early this morning, and today was picture day for Elisabeth. Randall tells me he never, ever, wants to use a curling iron on Elisabeth's hair again. I guess that wasn't a fun experience. As daddies go, I think he generally does a great job fixing the girls' hair, but apparently that's where he draws the line. We took both girls to family night tonight (once a month, the women of the church provide a meal and we have an enjoyable evening of fellowship). I stopped on the way home from work to pick up some wonderful desserts from Whole Foods (what an amazing place that is). Luckily, there were leftovers, so we'll be enjoying cake for a few more days. The girls decided they want to sleep in the same bed tonight (it's a full-size bed), and they are chattering away with each other at the moment. It will be lights-out soon.

Posted by Susan at 08:50 PM | Permalink

6:00 PM: Well, Sophie was up until nearly 10:00 (not that it stopped her from waking up before the rest of us!). In spite of getting a smaller amount of sleep than normal, she did pretty well for most of the day today. Randall and Elisabeth had school today, so I was home with her. She allowed me to get a lot of work done this morning, and then we went out for lunch and a few errands. She was a charming little kid during our outing. She had a nice, long nap, but she woke up a total crab. She's been pretty demanding and fussy ever since. We tried to play outside for a little while, but it's just too windy.

Posted by Susan at 06:09 PM | Permalink

10:00 AM: We're having a lovely morning, although it did start out with Sophie's diaper leaking on her blankie and bed (soaked through the down comforter and sheets). Thank goodness we bought ourselves a waterproof mattress pad. Once we got that situation under control, the girls played nicely while Randall and I drank coffee and talked. Randall will spend much of today finishing off his sermon, and tonight we're getting a sitter. We're going to a party in Durham (hosted by my friend Jennifer from work and her boyfriend Brett). We're really looking forward to it. The party will be fun and 3 hours of talking in the car (with no kids!) will be nice too, since we enjoy each other's company so much.

Posted by Susan at 10:00 AM | Permalink | Comments (2)

10:00 PM (Randall posting): Susan and I had a great time at the party (I worked on my sermon on the way up) and it sounds like the girls had a wonderful time with Ms Dawn (THANK YOU!). They got to go to McDonald's, which is always a treat. I was very surprised to hear that both girls went to bed with minimal fuss. We'll need to check and see which girl is sleeping in which bed since there has been a great deal of "bed shopping" lately with all sorts of different configurations (including Elisabeth in the toddler bed!).

Everyone keeps asking how Sophie is doing, and she's doing great. Not having chemo for two weeks straight will certainly perk you up. Then again, we are really hoping that her counts will be strong enough on Monday to resume treatment on Tuesday. I think I'm on deck this week, so say a prayer for all of us!

Posted by Susan at 10:07 PM | Permalink | Comments (1)

4:30 PM: Today has been another good day. We were all able to go to church today, and it was a special day since a baby in our congregation (Anna Grayce) was baptized. Anna's mom is Shannon, who teaches at Elisabeth's school, so there were some extra familiar faces there today (Elisabeth was thrilled to see Ms. Lee, who handles after-school care). Both of Sophie's former daycare teachers joined us today too (coincidentally), so it was just a "teacher" day for our kids. Sophie enjoyed seeing Ms. Maria, in particular (I guess Ms. Dawn was "old news", having just babysat the night before). Speaking of babysitting, Ms. Dawn is coming again tonight while we go to Bible study, and then we'll head out to sushi in Fayetteville from there (it's good, really!).

Tomorrow is a teacher workday, so Elisabeth will be home during the day. I will be escaping to work, while Randall spends time with the kids. I'm hoping that without the imminent burden of taxes and this week's sermon hanging over his head, he'll be able to just play and hang out with them and not worry about accomplishing anything in particular. I find that I'm at my most impatient with the kids when I'm trying to get something else done. The kids could be behaving in a particular way at one time and it doesn't bother me at all, but the same behavior when I'm trying to concentrate on something will drive me up a wall. I would be a perfect mother if that was all I had to do!

Posted by Susan at 04:40 PM | Permalink | Comments (2)

3:45 PM (Randall posting): Today has been pretty uneventful. The home health care nurse came this morning to do Sophie's bloodwork. We also changed the cap on her line and changed her dressing. The skin on the border of the dressing is starting to look irritated (with bumps, like a rash), so we had to reposition the dressing a bit. After that trauma, the girls watched Scooby Doo and afterwards we went to lunch (Arby's--Elisabeth ate all of her own lunch and some of mine!). Then Sophie took a nap while Elisabeth and I went outside. Elisabeth played and I worked in the yard a bit, mostly piddling.

Sophie just got up from her nap. She slept through the phone call from the clinic, which brought good news. Sophie's counts are high enough for her to resume the protocol tomorrow. Tomorrow will be a LONG day, as she will need to be throughly hydrated before the treatment, and they will keep her around and keep her on fluids for some time afterwards to make sure the chemotherapy has not damaged her bladder. We will also resume giving her chemo at home with pills and with syringes directly in her IV. This phase will last approximately 28 days, which seems like nothing, really. The heavy duty stuff is in the first two weeks, so we will worry about the here and now rather than worry about what happens 3-4 weeks from now. As a family, we are really learning to live in the moment. At times it has not been fun or easy, but it is the only way we are going to make it through all of this!

"So do not worry about tomorrow, for tomorrow will bring worries of its own. Today’s trouble is enough for today." (Matthew 6:34)

Posted by Susan at 04:00 PM | Permalink

3:39 PM (Randall posting): Sophie and Susan are on their way home. The clinic visit went well and we are poised to begin again with all of the treatments and procedures in this phase of the protocol. One good thing is that there will be no clinic visit next week. Because Sophie does not need another spinal tap for a while, the only treatment she needs is at home (pills and IV injections). Next week the home health care nurse should come and do a blood draw on Wednesday just to make sure that Sophie does not need a transfusion, which would require a trip to Chapel Hill. In a little while I will head out to pick Elisabeth up at school and the four of us will meet in town for dinner and Elisabeth's dance class afterwards.

I spent part of the day today catching up on my reading for school and driving around town to find Detachol, which is an adhesive solvent for dressings like the Tegaderm. Nobody here had ever heard of it, although one place had an alternative in the form of an aerosol. After poking around on the computer for a while, I found a place to buy it online. Not surprisingly, Sophie's doctor sent her home with a new bottle of it! I'm sure we'll be using it as we're going to be trying a new dressing (Mefix) that requires changing three times a week instead of once. Now there will be major trauma in our house three days a week instead of only on Mondays! Honestly, though, it's worth a try.

Assuming there are no hiccups or glitches in the next few weeks, Sophie will begin Interim Maintenance (phase 3 of her protocol) on May 17th. That date is significant because the final phase (Maintenance) is supposed to last until the two-year anniversary of the start of Interim Maintenance. So we are looking at an eventual (distant) horizon of May, 2007, one day at a time.

Posted by Susan at 03:52 PM | Permalink | Comments (1)

2:40 PM: Sophie seems to be tolerating yesterday's chemo pretty well. She hasn't been nauseated, and her energy level has been pretty high. She did have a hard time holding herself together during dinner last night, but she had only had a short nap on the way home, so she was probably more tired from the lack of nap than from the chemo.

I think what's getting hard is how attention-seeking she is. When she's awake, she wants someone by her side all the time. This makes working at home (or doing anything other than sitting with Sophie) challenging. When she's not napping, we find ourselves putting her in front of the TV far too often (and even that isn't entirely successful).

Inspired by the show "Supernanny" we thought that perhaps a little more structure to our day would be a good idea. So, this morning, I developed a daily schedule of activities for Sophie. This will be helpful for us as a family, because it will give us concrete (and fun) things to do throughout the day, which will reduce our reliance on the TV. It should also be helpful to family and friends who come to help out. This means, at least temporarily, that the adult-in-charge won't get as much productive work done, but if it reduces the frustration level, it will be worth it. I'm planning to go on a reduced schedule under FMLA in the next week or so (I'm still trying to maintain a full-time schedule and eating up my leave balances). And after Randall's classes are done (this week!), he plans to focus on finding someone to come to the house during the day to help out.

Posted by Susan at 02:44 PM | Permalink | Comments (1)

9:30 PM: Well, the structured-schedule experiment was partly successful. It didn't help when a half-hour phone meeting turned into an hour and a half, but Sophie and I generally had a good day. We'll continue adjusting the schedule until we find a routine that generally works (realizing, of course, that a total routine is impossible with our lives lately).

I gave Sophie her chemo injection tonight after dinner. She and Elisabeth were watching one of the videos that arrived in the mail today from a friend of mine (thanks Wayne!), so she didn't seem bothered at all by what I was doing. I felt sad and hopeful at the same time to be injecting such a powerful drug into my daughter's body.

We were happy to have Randall home tonight after a long day at Duke. He's feeling down because one of his professors told the class today that his 33 year-old son has a serious recurrence of cancer that has metaticisized to several parts of his body. Although they are exploring some options, they are also preparing for the worst. We don't even want to imagine what that must be like.

Posted by Susan at 09:38 PM | Permalink

9:30 AM: It was a tough night. Sophie woke up around 11:30 vomiting, so we gave her some Zofran, which seemed to take care of it. She was very matter-of-fact about it and didn't seem upset, but it broke our hearts. The side effects of these medicines make it even more real for us. Although this particular medicine didn't seem to cause nausea last month, we'll precede the injections over the next 3 days with Zofran to prevent nausea (we hope).

Posted by Susan at 09:28 AM | Permalink

9:00 PM (Randall posting): As has always been the case, Sophie's middle-of-the-night nausea did not adversely affect her today. She had a great day today, even if we did not stick very well to our schedule. We watched less TV, though, and spent more time outside, so we've made some progress. Unfortunately, I still have some schoolwork to do, so I'm not free to spend every waking moment with her right now.

One exciting thing that happened today was that we have new neighbors. For the past few weeks we have been watching as two Kildeer have nested in the backyard. Today they had babies. Sophie and I saw the baby birds first as we came home from dropping Elisabeth off at school. We have all had a great time spying at them from across the yard, which has been very upsetting to the adults.

This evening after dinner we all spent some time outside, the girls playing in the sandbox, swinging, blowing bubbles, riding bikes, and so forth. It was a great time. Then we got Sophie bathed and started working on all her treatments (chemo, dressing change). The dressing change went terribly. At the clinic on Tuesday, they switched her dressing to Mefix from Tegaderm because it looked as if Sophie was beginning to react to the Tegaderm. The Mefix does not appear to be a viable alternative. For one thing, Mefix needs to be changed three times a week instead of once, and for another, it was incredibly difficult getting it off. As if that wasn't bad enough, poor Sophie's skin all around the dressing was incredibly irritated and red, very rash-like. We were all very upset. I spoke with the doctor in Chapel Hill and she suggested that perhaps Sophie is allergic to the Mefix. Fortunately we had a third (sample, from the clinic) alternative, so we stumbled our way through trying this one. Sophie finally calmed down and is on her way to falling asleep, but gosh what an evening! I certainly hope this irritation clears up (this particular dressing needs to be changed once a week, so we've got the next seven days to keep our eyes on it and worry about it).

Posted by Susan at 09:17 PM | Permalink | Comments (2)

10:00 AM: We had a really good night (meaning, we all slept the whole night with no interruptions). That always helps us have a good start to our day. Randall and Elisabeth left for school this morning, and Sophie and I are working on a revised activity schedule (I should say, we're already ignoring it and doing whatever we want).

Sophie and I were just having breakfast (well, I was finally having breakfast, and she was having her third snack). We were sitting together quietly eating, and out of the blue, she said, "So! How is your toast?" It seemed to be very grown-up conversation for a two-year-old. Now, we're heading outside for some play time (right on schedule!). She wants to play in the sandbox and says she's going to make a "big hill."

Just now, Sophie brought me one of Elisabeth's notebooks and told me to read it. I flipped through her various pictures and stories and found the following prayer she wrote: "Spirit of the living God I love you. Please keep me in your Holy Family. I want to be in your heart. And Sophie get better. Amen."

Posted by Susan at 09:57 AM | Permalink | Comments (5)

7:15 PM: It's been a good day. I managed to get a lot of work done this afternoon (and consequently, Sophie watched a fair amount of TV, but she also wandered away and played with toys). Today we pulled out of her bookshelf every book about numbers or counting. She didn't read all of them, but she enjoyed the hunt. Randall came home mid-afternoon while Sophie was napping (2.5 hours today!). When she realized he was home, she sidled over to him and said, "I'm so glad you're here." He said it was very sweet.

We're winding down from a nice family dinner (I made spaghetti carbonara), and the girls are playing together (with only minimal yelling). Sophie has taken nearly all of her medicine for today. I'm waiting for the Zofran to have time to take effect before administering her chemo. It's all ready to go, and she's excited, because we're doing a cap change (we do that twice a week on Mondays and Fridays). Her chest looks a little better today, but it will take some time to heal. She just came up and give me a big hug and said it's time to stop playing with the computer, so I guess I'd better wrap up!

Posted by Susan at 07:17 PM | Permalink

1:00 PM: The girls are both down for a nap (Elisabeth has been sleeping for an hour already). It's no wonder--they were both up at 6:15 this morning! We fail to understand why we have to drag them out of bed on school mornings, but on Saturdays when we can all sleep in, they're up at the crack of dawn. We took advantage of the electronic babysitter while we slept a while longer. Randall got up with htem just before 8:00 and let me sleep until 9:30. What a luxury!

We have one more injection of Ara-C tonight, and we'll be done for the week (she'll have four more injections next week). She seems to be handling that well (or else the Zofran we're giving her before each shot is helping).

Posted by Susan at 01:05 PM | Permalink

4:00 PM: Another good day--Sophie's had lots of energy all day and has whined only a little. We got up early to have breakfast at church and then stayed for the service and Sunday School. Randall got a positive comment on his sermon (on the topic of "living stones"--1 Peter 2:2-10), which always makes him feel good. Following all the church activities, we visited our normal Sunday lunch spot and then came home for a nap. Randall and I had a meeting at church, and we just got home. It's a little windy, but the girls are wanting to play outside. Ms. Dawn is coming over tonight to watch the girls while we go to Bible study and then out to a dinner by ourselves (much needed).

Posted by Susan at 04:05 PM | Permalink | Comments (1)

7:20 PM: We were both home with Sophie today, although Randall was gone for a few hours for a doctor's appointment in Durham. Right around the time Randall left, he noticed that our bird family (who we thought had left for good) was back with four babies, so now we know that all four eggs hatched successfully. We were also excited to see a Goodyear blimp in the sky. Sophie just thought it was an airplane, but we thought it was pretty cool.

Sophie did pretty well today. The unfortunate thing was that four days' worth of poop decided to come out just 15 minutes into her nap, multiple times. That meant no nap today, and we have seen the effects this evening. We're glad the constipation isn't a problem anymore (at least for today). I'm sure it will be back soon--she tended to be constipated before the diagnosis, and many of the medicines she is taking have constipation as a side-effect.

The girls are taking a bath together now, and we'll change Sophie's dressing afterwards. It's not due to be changed until Thursday, but it's peeling up a lot at the bottom, and there needs to be a good seal around the incision site. Given how much it has peeled, we're assuming a little Detachol will make it come off with very little discomfort, but she's so traumatized by the whole process in general, she'll probably get really upset whether it hurts or not. We shall see!

Posted by Susan at 07:29 PM | Permalink

9:15 PM: We finally got around to downloading some pictures from the camera onto the computer. Quite a few of these pictures are now posted on the web site for Elisabeth and Sophie. (For those of you from Sophie's daycare, there's a picture of all the kids I took on a day Sophie visited Countryside in March.)

Here's a recent one of the girls that offers a glimpse of Elisabeth's new haircut and her splint (for her broken finger).

Posted by Susan at 09:20 PM | Permalink | Comments (1)

8:00 AM: The dressing change went reasonably well last night. The new bandage (IV 3000) came off pretty easily, but she was really upset about it (she just associates the dressing change with pain and discomfort, whether there is any or not). We're starting to think that maybe the problem is with the Detachol and not with the dressing. It just seems like her skin has been significantly more irritated since we started using it to loosen the bandages. We're going to try the next few dressing changes without it to see if that makes a difference.

It was a rough night. Sophie woke up quite agitated at 11:00 (just as we were heading to bed ourselves). She was scratching a lot at her bandage and was so hysterical, she couldn't tell us whether that was what was wrong. I laid down with her, and every time she drifted off, I would sneak out and go back to my own bed. But then she'd wake up scratching, see I wasn't there, and start crying again. So, I settled in with her and stayed until we both fell asleep. Eventually I woke up and saw that she was sleeping soundly and went back to bed, but I had to make several return trips during the night. I'm thankful I had already made the decision to work at home today, because I would have had a hard time staying alert for the drive in.

Posted by Susan at 08:10 AM | Permalink | Comments (1)

8:10 PM: Sophie had a pretty good day, and I was able to be pretty productive today (with the help of the TV and her imagination). Today she insisted on being called "Annalise"--perhaps we've been watching a little too much of "Barbie as the Princess and the Pauper." She took her nap a little after 1:00 and slept until 4:30 (that certainly helped me be productive in the afternoon). Eileen (my stepmother) arrived just before Sophie woke up and stayed with Sophie while Randall and I took Elisabeth out to dinner (before going to her dance class). While Elisabeth danced (the recital is Saturday), we went shopping at Belk, where I finally got a chance to use the gift certificate my mother-in-law gave me for Christmas (thanks, Karin!). Eileen decided to take Sophie to Walmart while we were gone to pick up something she forgot to pack to bring with her. Now we're taking care of chores as we prepare the girls (or at least one of them--Sophie's still out and about) for bed.

Today is my grandmother's birthday. Her name is Estelle, and she's 85 today! (She reads printouts of the weblog, so I hope she gets a kick out of seeing her name in print).

Posted by Susan at 08:13 PM | Permalink

7:52 PM (Randall posting): We have had a terrific day today. Susan left early for work and I got up and got Elisabeth off to school while Eileen stayed home with Sophie.

The one bad news (maybe) that we got today was that Susan's car died on the way to work. She pulled over and it started back up. The clock reset, so there was something electronic wrong. She got the car to a service station and they could not find anything wrong. The car made it home safely with no problems, so we'll just have to wait and see if it acts up again. In the meantime, whoever drives up to the Triangle will drive the minivan. Of course, this does not help me fight off the itch to buy a new car!

With Eileen at home, we actually stuck pretty close to the schedule. The Home Health care nurse came mid-morning to do a blood draw and after that Eileen and Sophie went outside for a long walk. They saw another blimp (not the one we saw the other day), which was very exciting. After the walk, Sophie had lunch (not much since she had been snacking all morning--typical). She then decided she wanted to take a nap in Mommy and Daddy's bed. The new location must have worked, because she practically went straight to sleep and slept for nearly three hours. I got lots of work done today, which is good since I have (note the present tense *have*) a paper due today (11:59pm is still "today," right?).

The best news of all today was that the blood work came back really, really strong. Sophie's ANC (the count we really look at to see how her immune system is holding up) was 2.6. That's the highest it has been since she has been diagnosed. All of her other counts were good, but that one in particular is just remarkable. Her hemoglobin (red blood cells) and platelet counts have dropped some, but she will not need a transfusion this week. We start the second week of in-home IV chemo tonight (I think Susan is administering it as I type), but given how strong Sophie's counts are as we head into these next four days of chemo, we are very hopeful that with all of the prayers supporting Sophie and our family, Sophie will continue to hold strong. We're hoping that we'll be able to bring Sophie by her old classroom this week. She's been talking a lot about her "school" these last few days, and I'm sure she'll enjoy a visit.

We had a good night last night, here's hoping that we have another good night tonight!

Posted by Susan at 08:07 PM | Permalink

8:30 PM: We got a card in the mail today from Sandy, a friend of Randall's mom, and I found it so touching. I just want to share what it said (the printed part) that felt so very supportive.

ON THE COVER: I've been thinking abut everything you're dealing with right now, and I'm so inspired by your response. God has given you a beautiful grace to go through this...

INSIDE:
...and your faith is helping others see His faithfulness more clearly.

Scripture verse:
"...We can be mirrors that brightly reflect the glory of the Lord. And as the Spirit of the Lord works within us, we become more and more like Him." II Corinthians 3:128 TLB

And in addition to these amazing words that were printed on the card (manufactured by Dayspring cards), she wrote some very nice things to us. What a comforting thing to come home to after a long day. (Hoping that posting this here isn't a copyright violation!)

Posted by Susan at 08:30 PM | Permalink

9:15 PM: Sophie had a mixed day. I was at work for most of it, but I can report on what I heard. Randall said she seemed agitated a lot--the littlest thing made her complain and whine. That was likely due to constipation (she hadn't pooped since Monday night), but she finally went tonight, so that should make her feel better.

She and Eileen played outside a lot today, which she seemed to enjoy. Sophie got to visit Countryside (her old daycare) today and hugged her friend Madelyn when she got there. In fact, Madelyn was the only person she seemed excited to see.

Randall administered Sophie's IV chemo tonight, and we were sure to give her Zofran beforehand. I forgot to do that first last night, and she was quite nauseated last night around 11:00 (although she was retching, she never did throw up). She seems to be doing well so far tonight, but she did complain just now of an upset tummy, but she said she's not going to throw up. I'm just betting that the girls (who are sleeping in the same room tonight) will wake up early tomorrow, since we don't actually have to get out of bed until 7:00.

Posted by Susan at 09:23 PM | Permalink | Comments (1)

4:00 PM: It's been a good day. Sophie played with Eileen and has avoided much TV (although she has negotiated a little more than Eileen had in mind for this afternoon). Elisabeth has a dress rehearsal tonight for her dance recital tomorrow. Randall and I drove out to Campbell University (where it will be held) close to lunch so I would know how to get there (and how long it would take). That was a nice little outing. We have a very full weekend ahead of us, so it was nice to have a little downtime today. Neither of us got much work done though!

Posted by Susan at 04:00 PM | Permalink | Comments (1)

9:14 PM (Randall posting): It has been a long day. Not that it has been a terrible day, just a long one. Susan and Elisabeth are still at the dress rehearsal. We had an early dinner so they could head out in time to get up to Campbell. Sophie and Eileen went to WalMart while I worked on my sermon for Sunday.

Susan just called and said they are on their way home. I certainly hope the recital does not go this late tomorrow!

I gave Sophie her Ara-C this evening and Eileen gave her the Mercaptopurine. As I was injecting the medicine, I got kind of overwhelmed by how matter-of-fact this whole experience is becoming. Last night as Susan and I were out at a restaurant, a couple behind us had a child about Sophie's age. As the mother lifted her daughter out of the high chair, exposing the child's belly, I seriously expected a "tail" from an IV to be poking out of her shirt. Contrary to the way my mind seems to be working, not every child has an IV. Not every child has leukemia. Not every child is losing her hair. Not every child wakes up vomiting in the night. Not every child is receiving chemotherapy every which way possible. My child is.

And you know what, it is beginning to feel very "normal." It's hard to remember what our life before this was like. Things that happened in December are like from some distant part of our past. This is our life now, and this is where we are at. There is nothing weird about this anymore. The so-called "Real World" is the world you are in, not some world "out there." Our world has changed, to be sure, but it is just as real (maybe even more so) than it was four months ago.

Best of all, God is still with us (to paraphrase John Wesley).

Posted by Susan at 09:34 PM | Permalink

4:00 PM: We all slept in a little longer than normal, which was nice (although I'm surprised Elisabeth was up as early as 7:30 when she went to bed after 10:00). Eileen and I went out this morning to run a few errands and pick up the flowers we ordered to give to Elisabeth after the recital tonight. We had naps, and Randall just got back from a rehearsal for a vow-renewal ceremony that will be held tomorrow. Now we're all getting ready to go to Elisabeth's recital. Sophie will stay with Ms. Dawn, since it will be such a long night. We had planned on taking her, but after how long things went last night, we weren't sure she could handle it. It already feels chaotic and we're not even there yet!

Posted by Susan at 04:15 PM | Permalink

10:35 PM (Randall posting): Another long day. We are home relaxing after Elisabeth's recital. I'm so proud of her! She wasn't perfect, but she looked just beautiful and she has gotten so poised since a year ago. I can't wait to get the DVD to watch it again (and again, and again, and again, and again).

Sophie would have enjoyed the show, but it would have definitely worn her out. Ms Dawn said that Sophie *asked* to go to bed at 8:30pm and after Ms Dawn read one book, said she didn't want her to read another. That is pretty unusual behavior for Sophie. She is clearly getting more and more tired. I'll be curious to see what her counts are on Tuesday. It wouldn't surprise me if she needs a transfusion next week.

Tomorrow will be another big day, as we have church in the morning, a "graduation" ceremony at Lottie's (where Sophie was in daycare until last summer), a wedding, and a revival at church. Needless to say, we will all be doing our separate things tomorrow! Sophie and Susan will go to Lottie's while Elisabeth and I will stay at home to do the wedding and the revival. After tomorrow, I may need more than a revival, I may need resuscitation. Who ever thought Monday would be the day of the week when we'd have a "breather"?

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