Sophie's World

2:50 PM: Sophie and I have arrived home from our visit to the clinic. We left just after 7:30 this morning and got there around 9:30. They used numbing cream on her thighs and gave her the injection at 10:30. They let her go after observing her for a half hour to make sure she wasn't going to have an allergic reaction. After we left the clinic, we walked over to the hospital to visit a friend whose baby (Macie, almost 8 months) has AML and is in the hospital for their second phase of treatment (AML patients stay in the hospital for their treatments and go home for breaks between phases--I can't even imagine how difficult that must be). We saw our favorite nurse Erin (hi, if you're reading this Erin!) and hung out for a while. She seemed happy to be there, but I found it challenging. I very much enjoyed talking with Macie's mom (and meeting some other parents in the hallway), but being in the hospital just reminds me of the most challenging times during our experience, and it makes me so thankful we are admitted only infrequently.

Sophie and I stopped at the mall for lunch and picked up a few things. We had a great ride home, and she is now taking a nap. I'll definitely be joining her. I'm wiped out!

Posted by Susan at 02:56 PM | Permalink | Comments (2)

9:00 AM (Susan posting): We had a great night. Sophie was eager to head to bed at 8:30, and she stayed up "reading" her leap-pad until about 9:00. I stayed up later than I meant to reading, but I still was able to get a good eight hours of sleep (with one brief interruption from Sophie, who went back to sleep after I re-covered her with her blanket). She doesn't seem to be suffering from any side effects so far, but things like mouth sores will probably take a few days to be obvious. I'm being very careful to brush her teeth regularly.

One of the daycare workers (Megan) from Countryside is here today with Sophie while I take care of some work things (lots of meetings by phone today, and I haven't worked a full day since last Thursday, so I have some catching up to do).

Posted by Susan at 09:10 AM | Permalink | Comments (3)

11:45 PM (Susan posting): What a long (and productive) day it has been. Having help with Sophie today was wonderful. Sophie had a great time with Megan, and I got lots of work done (though not enough, since I just now finished working on an article we want to submit tomorrow). Sophie is doing really well--still no side effects so far. We skipped her nap today, and she went to bed pretty easily tonight. We had dinner tonight with friends from church, and I attended a women's meeting for the church while the dad watched Sophie, who had lots of fun playing with their kids (thanks Wayne and Erika!).

Randall is having a wonderful time reconnecting with people in New Mexico. Elisabeth is also having a great visit. There was a big disappointment last night, when they discovered that the circus tickets they thought they had purchased for tonight were actually for yesterday's show. Apparently, she took that news pretty hard, but they were hoping to exchange the tickets today. I haven't heard whether that was successful. I miss them both very much, but it's also nice to have so much time to focus on nothing but Sophie.

Posted by Susan at 11:51 PM | Permalink

4:30 PM (Susan posting): Another good day. Even without help, I got a lot of work done today (and Sophie watched too much TV, unfortunately, but it's a temporary situation!). I've been feeling very patient with her in general, but I find it very challenging when she flies off the handle when something doesn't go her way. So, taking a cue from Nanny 911 (or is it Super Nanny?), I warned Sophie after the first time she overreacted today that if she yelled at me again, I was going to put her in the naughty chair. She did it again, of course (after all, it's very frustrating when the baby stroller won't go in the right direction), so we went to the naughty chair. She thought it was all very fun until I turned off the TV. She cried the whole time (but stayed in the chair) until the timer went off. Then I pulled her into my lap, explained why she was there and asked for an apology. She said she understood and said she was sorry. She has started to get upset about other things a couple of times today, but I tell her she doesn't want to go to the naughty chair, and she pulls herself together. Amazing!

I've talked to Randall a few times today. He's really enjoying his time in New Mexico, reconnecting with old friends and future colleaugues. He said he's tried to call Elisabeth a few times today, but they msut be out doing something fun.

Sophie just woke up from a 3-hour nap, and I think we're going to go into town to pick up a refill on some of her medicine and pick up a few other things we need. Perhaps a trip to Cracker Barrel is in order! Thanks to everyone for your encouraging comments, especially while we're all by ourselves.

Posted by Susan at 04:36 PM | Permalink

8:15 PM (Susan posting): I stayed up too late last night, as usual, so even though Sophie slept until 7:30 (pretty late for her), I went back to bed and slept some more while she watched TV (and occasionally woke me up). We've had a good day, with lots of laughing and playing. We enjoyed some outdoor time after dinner. She's watching one Dora video, and then we have a deal that she will go straight to bed (we'll see how that works out in 45 minutes!).

She seems to be feeling well and isn't suffering any obvious side effects so far. One thing I'm noticing is bad breath, so we've brushed teeth (and tongue) several times today. She looks a little pale, but that's often true, whether her counts are low are not. Potty training is going great. I can't remember the last time she had an accident (I've probably jinxed us into having one soon by saying that!).

Randall is having a fantastic time in NM. Everyone there has made it clear that they are really looking forward to having him back in the conference when our time here is done. When I called to talk to Elisabeth today, she cried hysterically when Jeremy asked her to come to the phone. She absolutely didn't want to talk to me. I just told her I love her and miss her and that she could go back to playing with Jacquelyn. After Jeremy and I got caught up, I ended up talking to Jacquelyn for about 5 minutes. Go figure!

Posted by Susan at 08:15 PM | Permalink | Comments (2)

1:15 PM (Susan posting): Church certainly wasn't the same without Randall there, but our friend Ryan did a great job leading worship and preaching. It certainly was nice to have someone filling in for Randall. Sophie stayed in the sanctuary for the whole worship service and enjoyed visiting various laps. Sophie and I took Ryan out to lunch, and several church folks joined us. It was very enjoyable. I like these people.

Sophie has lots of energy today and doesn't seem to be suffering any side effects from the chemo so far. She's a pooping machine (7 episodes this morning). We're looking forward to a quiet and relaxing afternoon. Our family returns late tomorrow night!

Posted by Susan at 01:17 PM | Permalink | Comments (1)

3:30 PM (Susan posting): It's our last day on our own, and we're doing well. I asked Ruth (a church member, who Sophie is particularly fond of) to come help us this morning with Sophie's dressing change. I think Ruth was a little scared about doing that, but she did a great job of comforting Sophie and holding her hands away from the site. She cried, as usual (Sophie, not Ruth!), but she got over it quickly.

Randall called today to let me know that Jacquelyn and Elisabeth appeared to have picked up a stomach bug of some sort. Elisabeth actually threw up when they were shopping today, and he was worried about whether she would be able to travel, or whether bringing her home would introduce something dangerous to Sophie. We decided they should prepare to travel and see how she did throughout the day. He called later to say she seemed to be feeling better and hasn't thrown up again. So, they're going to come home, and we'll be extra sure to wash hands and try to reduce germ exposure.

Randall's dad (Bill) and his wife Donna will arrive tonight around dinnertime and will stay through Friday. Something makes me think they're on one of those low-carb dieats, and most of the things we usually eat are far from low-carb. I'm thinking we'll go out to dinner and talk about what kinds of things they would like to eat while they're here and then do a bit of grocery shopping before heading home. Randall and Elisabeth arrive at the airport at 9:45 tonight (and we're an hour from the airport), so it will be a late night for them.

Posted by Susan at 03:38 PM | Permalink | Comments (1)

10:30 PM (Randall posting): Well, Elisabeth and I didn't get in quite as early as any of us expected. Our flight out of Minneapolis was delayed for no apparent reason and we spent at least an hour at the gate with no air conditioning in a completely full aircraft--ugh! Once we left the gate I was beginning to wonder if we were going to taxi all the way to Raleigh, but we finally got off the ground.

We pulled into the driveway around 12:30 this morning. We've all been a little tired today. Thankfully Dad and Donna have been here to help. Sophie and Elisabeth mostly seemed happy to see each other, although there has been a fair amount of squabbling over who gets to play with what. Elisabeth had her first piano lesson today, and she seemed to enjoy it a lot. I think she mostly enjoyed being "old enough" to do something like that.

Sophie and Elisabeth went to sleep tonight in the same room (Elisabeth's, with Elisabeth on the top bunk and Sophie on the bottom). I never thought that would happen, but the two of them must have been quite tired and after about 30 minutes of chatting, they were quiet (although Sophie has been fussing for the last 20 minutes or so, not sure what that is about).

It has been hard to be at home today, mostly because it has been overwhelming at times with all that needs to be done around the house, the phone ringing off the hook (seems like), the cat coughing up a hairball the size of Montana (while I'm on the phone), and the kids being kids. I am thankful that there is nothing pressing on me this week and I'll be able to enjoy just spending time at home with the girls (I could do without the cat and the hairball, though).

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

5:45 PM (Susan posting): We had a bit of a hectic morning, as Randall prepared to drive to Durham for a dental checkup, and we realized that Elisabeth was having ear pain and we made plans to take her to the doctor. I took her in to the urgent care place in Dunn, where we learned that she has an ear infection, and we got a prescription for amoxicillin. She continues to have pain and is starting to cough up the stuff that's draining.

We hadn't been back to the urgent care place since the day we took Sophie to find out why she had so many bruises. It brought up lots of emotions for me to be there again and to give the doctor an update on how Sophie has been doing. I was really touched by the concern he showed for Sophie. It was clear that she has been on his mind a lot, and that he truly cares about her progress. I gave him the address for the weblog so he could keep up with her here (hi Dr. Knott!).

Sophie has had two time-outs today, as we are working on her over-reactions. I think she's getting the message. She also had an accident (on our bed!) at the end of her nap today. It's always something!

Having grandpa and Donna here is very helpful, and Randall and I are looking forward to dinner out together. We've not been able to have the time together that we're used to, so this will be good for us!

Posted by Susan at 05:47 PM | Permalink | Comments (2)

8:30 PM (Susan posting): It's been quite a day. Sophie woke up this morning around 7:00, saying that she had to go potty and that her tummy hurt. Randall took care of her, and she went back to sleep (our first clue that something was up). When the home health care nurse came to check Sophie's blood levels at 9:30, Sophie was still asleep. I got her up, and she was totally limp and lethargic (but conscious). She wouldn't sit up, and she clearly just wasn't herself. He heart rate was low, her blood pressure was very low, and her temperature was 95.

I called the doctor, and he said it sounded like her blood sugar was low. The nurse checked it, and it was 40 (apparently, that's very low). I gave her orange juice and gogurt, and it was up before too long. The doctor said it may have been a random thing, but it can also be associated with infection, so he asked us to go to the local ER to have her blood checked, draw a blood culture, and begin administering antibiotics.

Given our recent experiences with the local ER, we decided to have her transported by EMS, hoping that would get them to treat her more seriously. I knew we were in trouble when the EMS told the ER as we approached that he was bringing in a diabetic 3-year old with low blood sugar (I think there's a huge difference between diabetes and cancer, but I'm no doctor). They put her in a private triage room immediately, but did nothing with her for over an hour. When our doctor called to check on her, the ER doctor told him we had "just arrived" (when we had been there for an hour at least). They finally drew blood and put her on normal saline (instead of the dextrose I'm fairly sure he wanted her to have), and eventually, they started the antibiotic.

When the blood results finally came back, they showed her white counts to be elevated, which may be a sign of infection, so our doctor asked them to discharge her so we could drive her to Chapel Hill. We finally arrived at about 4:30, and her room was ready. Amazingly, it's the same big room we've been in both other times we've been hospitalized. Her blood sugar was kind of low again by the time we were admitted, but it's been fine ever since.

Since this is the second time she's had problems with her blood sugar (the other time was in the clinic when she was pretty far down the list of kids having spinal taps), Dr. Gold said he wants to call in an endocrinologist to meet with us tomorrow. I don't know if he's going to run any tests or just give us advice about how to avoid this in the future. They also want to watch the results of the blood culture tomorrow, but Dr. Gold says she'll probably be able to go home tomorrow afternoon (but we've heard that before--we won't hold our breath).

Elisabeth was home with Bill (Randall's dad) and Donna, while they all waited for Randall to come home (he had driven to Fayetteville for a church conference, and I called and left a message telling him what was going on--he left as soon as he could). Elisabeth was pretty upset to see Sophie be taken away in an ambulance, but by the time Randall arrived, she was over it. Elisabeth stayed with church friends while Randall came to the local ER to pick me up and drive us to Chapel Hill. He left around 7:30 to stay with Elisabeth tonight. Elisabeth is still having some ear pain, but she seems to be doing fine.

Sophie is happily eating chocolate pudding (or should I say "puddin") and watching Blue's Clues. I hope she won't stay up too late tonight. Oh, and Randall and I had a really nice dinner out last night. We ended up going to a very good restaurant in Dunn and really enjoyed ourselves. I guess that was preparation for what we would face today.

Posted by Susan at 08:53 PM | Permalink | Comments (3)

10:45 AM (Randall posting): I spoke with Susan just a couple of minutes ago. They had a good night last night, and even got to sleep in a little this morning. Elisabeth and I had a good night at home, although it's never the same when we're not all together as a family.

Sophie seems to be doing very well, although they will be running some tests on her today to check her blood sugar levels (the likely explanation for her state of lethargy yesterday). These tests will require fasting and blood sugar checks every two hours. So, the upshot is that whether or not Sophie comes home from the hospital today, it will be a long, long day. She is no longer hooked up to an IV, which is nice, and, as was the case the last time she was in the hospital, she is probably the healthiest kid on the floor.

Situations like this highlight what I've been trying to explain to folks for some while. Although we are all doing quite well, there is the constant, underlying sense of unease, a waiting for the next shoe to drop (other cancer patients and cancer survivors I have talked to instantly know what I'm talking about). Incidents that in other kids would not be much cause for alarm (or a 911 call, or a trip to the emergency room, or a trip to Children's Hospital) are, in our case, a cause for alarm (and a 911 call, and a trip to the emergency room, and a trip to UNC Children's Hospital). I have to admit that I am envious of other family's carefree lifestyle, particularly in the summertime. We are stumbling our way through this treatment, and are looking forward to the day when we, too, can live a carefree lifestyle.

An update on the Emergency Room situation. Dr. Gold agreed with me yesterday that unless Sophie is critical and in need of care immediately, we should just haul her up to Chapel Hill. The alternative is the minimum 5-6 hour wait at Betsy Johnson here in Dunn, followed by a trip up to Chapel Hill. Of course, if Sophie were critical, I wouldn't feel any more confident taking her to Betsy Johnson, but at least for these more or less "routine" trips to the ER (who ever thought we'd use the word "routine" and ER in the same sentence?), we've got a solution that will hopefully work better.

Thanks for all your support and prayers and words of encouragement. During trying times like these, it's good to know that there is a world of people out there pulling for us!

Posted by Susan at 10:50 AM | Permalink | Comments (2)

1:00 PM (Susan posting): We're still in the hospital. Sophie's glucose levels were low at the blood draw they did at 4:00 a.m. They decided they were going to discontinue the glucose fluids this morning and have her fast to watch her blood levels. When they took the baseline finger prick at 10:45 (oh, how Sophie loves that--not!), her blood sugar was already close to low (52), so they had me give her some food and drink (she had milk and a bite of graham cracker). An hour later, it was even lower (44), so she ate some macaroni and cheese and plenty of juice, and after a half hour, it was up to 86.

The endocrinologist came to talk to me a little while ago, and they think she has ketotic hypoglycemia, which is not related to the leukemia and is fairly normal for a kid her age. They drew some blood and are running a bunch of tests to see if that's the problem. If her body is making ketones, and the rest of her levels look good, we'll go home in the morning and start managing this by diet (eating regular meals and frequent snacks, focusing on complex carbohydrates). If her body isn't producing ketones, then there may be a problem with her pituitary gland (which could be related to the chemo), and we'll proceed on a different course (we're not really focusing on that yet, because it's not likely).

Posted by Susan at 01:10 PM | Permalink

5:20 PM (Randall posting): Just a quick note to let everyone know that Sophie will spend another night in the hospital. Sounds like basically they're wanting to make sure her blood sugar levels have stabilized before they send her home. I will be leaving in a bit to relieve Susan (who sounds a little overwhelmed after spending the day with Sophie, who was unable to take a nap thanks to all the coming and going). Elisabeth will stay with friends for a couple of hours while I head up to Chapel Hill and Susan heads back. I'll be with Sophie tonight and Susan will be at home with Elisabeth, eventually. Tomorrow morning is supposedly when Sophie will get to go home, but we've learned not to hold our breath. At a minimum, we'll need to check her levels tomorrow morning, try out her new at-home monitor (assuming it arrives in a timely fashion), and make sure we have all the information (dietary, medical, etc.) we need to have her released into our care.

By the way, if one more person tells me, "God never gives us more than we can handle" (no matter how true that may be), I'm going to scream. God did not give Sophie leukemia because He knew we can handle it. God did not give Sophie ketotic hypoglycemia on top of this because He knew we can handle it. I'd rather go through my day admitting to myself and everyone else that what we are going through on a daily basis, including Sophie's recent hospitalization, is, frankly, more than we can handle, but certainly not more than God can handle. Getting through this is not up to me, thank God!

Posted by Susan at 05:28 PM | Permalink | Comments (2)

9:15 AM (Susan posting): Elisabeth and I certainly had a good night's sleep. I can't say the same for Sophie and Randall, who just called. They had to check her blood with a finger prick at 2:00 and 6:00. For the one at 2:00, Randall was trying to help, but it was dark and he was disoriented, so they ended up getting blood everywhere. Her blood sugar level was fine (over 100) at 2:00, but it had started to fall (77) by 6:00, so they had Randall give her some cereal.

Randall saw Dr. Gold (our oncologist) this morning, and he said it's looking like afternoon for Sophie's release. The holdup is the endocrinologists, but Dr. GOld said he's staying on top of them to make sure things don't get delayed. They took Sophie off fluids this morning, so she will no longer be hampered by an IV pole. That should make her frequent walks around the floor a lot easier to manage. We can also finally give her a bath without worrying about getting her catheter connection wet (and exposed to bacteria in the water)--we can just tape it up inside the bib we use for baths.

Elisabeth and I will plan on hanging out here at home until mid-afternoon, when I hope we'll be going to pick both of them up and heading home together as a family.

Posted by Susan at 09:22 AM | Permalink

12:15 PM (Susan posting): I'm so excited--Randall just called, and he said they'll be releasing Sophie soon, so Elisabeth and I are on our way to Chapel Hill to go fetch them.

Posted by Susan at 12:12 PM | Permalink

7:30 PM (Susan posting): We are finally home. What a day it has been. Elisabeth and I headed out around lunchtime, and it turned out that there was a lane closure on I-40 that had traffic backed up. Not long before we decided to take an alternate route to the hospital, I noticed that the car was not accelerating normally and was making odd noises. We got off the interstate only to find that we were not the only ones to have that bright idea and sat in traffic. The car was running rougher and rougher. Just as I slowly passed by our normal in-town car repair place, I thought about pulling in, but I really wanted to get to the hospital. Not 15 feet past the place, the car completely died. I managed to pull into the turning lane so we didn't block traffic, and Elisabeth and I walked over to the car repair shop. They said they wouldn't be able to get to it until Monday and suggested we rent a car. Just our luck, all the places closed at noon (it was 2:00). I called a few friends from work, and found my friend Phillip. He was nice enough to drop everything and bring his whole family and two cars over to meet us, and he left one of their vehicles with us to borrow until Tuesday. I finally made it to the hospital around 4:00.

It took a while to get discharged and away from the hospital, but we finally pulled into Dunn around 5:45. We found an open pharmacy so we could get our prescriptions filled for the glucometer and related supplies while we had dinner. We're home now, and we'll get things settled and get both girls in bed early (I hope). I'm looking forward to having things back to normal.

As hard as today was, I'm thankful that I was within walking distance of the car repair place when the car died, and I'm thankful that I had a friend willing to let us borrow his car (and deliver it), and I'm so thankful to be home together as a family.

Posted by Susan at 07:41 PM | Permalink | Comments (1)

10:45 PM (Susan posting): Eileen's recent comment reminded me that, with everything that we have encountered over the last few days, the course of Sophie's treatment has apparently become routine. Sophie did get her scheduled chemo drugs yesterday. They began with a dose of zofran and dexamethazone (preventative anti-nausea and anti-inflammatory steroid), followed by vincristine (injected directly into her catheter) and methotrexate (pumped by IV over a half-hour). The dosage of the methotrexate was increased over the amount they gave her ten days ago. The only possible side effect we are seeing so far is a very irritated bum, which we are treating with a diaper rash ointment. Constipation (a normal side effect with vincristine) is definitely NOT a problem (if you get my drift).

Posted by Susan at 10:42 PM | Permalink

4:45 PM (Susan posting): What a normal, wonderful day today has been. This morning, it wasn't unusally stressful getting everybody ready and out of the house for church. Church went well. Everyone was happy to see us, and we were certainly happy to see them. The sermon went well. Most of the Sunday School teachers couldn't be there today, so I ended up leading a combined adult class. We had a nice lunch (with only minimal fussing from Sophie about having to eat protein with her carbs), and we got a good, long nap (over 2 hours!). We're having a late healthy snack, and Dawn will be coming over soon so Randall and I can go to Bible study and then out to dinner on our own.

Thanks to everyone for your continued prayers, thoughtfulness, and generosity. Our family is doing well, and we are moving forward from this especially stressful time.

Posted by Susan at 04:54 PM | Permalink | Comments (3)

1:15 PM (Susan posting): The girls are both doing well today. Sophie is currently napping while Randall and Elisabeth run some errands and I try to stay on top of a few things at work (I'm definitely being selective about what really needs to be done this week and what can wait). Our big stress of the day is that we heard back from the car repair shop, and the estimate for fixing the car is nearly $5,000. Needless to say, we are now actively shopping for a replacement. It was nice not having car payments for a few months, but we're willing to trade that for having a reliable (and possibly more fuel-efficient) car. Tonight we'll drive our minivan and my friend's car up to Durham so we can get his car back to him, we'll clean out the Oldsmobile of our stuff, do a bit of car shopping, have dinner, and head back home. It should be a full evening.

Posted by Susan at 01:15 PM | Permalink

4:30 PM (Susan posting): We decided a trip to Durham was too much tonight. Randall did a bit of local car shopping with Elisabeth this afternoon, and we thought it would be nice to relax tonight instead of running around. Plus, we still have to do baths and change Sophie's dressing tonight. We'll head to Durham in the morning and take care of everything then.

Posted by Susan at 04:36 PM | Permalink | Comments (1)

9:10 PM (Randall posting): Gosh! What a stressful day. The girls are all tucked away in bed (Susan too--although she's reading a proposal for work), and I'm doing research on buying a car on the computer. I'm really, really glad we decided not to go to Durham this evening. That would have been too much on top of everything else. At a minimum, I think we have something of a plan for how we will progress with our car situation, and I hope it doesn't entail moving too quickly, although we need to do something soon. Did I mention that our lives are becoming an awful lot like riding a roller coaster lately? What a ride! I think I might be sick.

Both girls seem to be doing fine. Sophie's dressing change was traumatic (of course) but she seemed to get over it right away and she was her happy-go-lucky self within minutes of us finishing. This new dressing (Opsite 3000) is so much better than the others we have tried. Although Sophie still cries and struggles through the whole process, it is much easier on Susan and me (or whoever is helping at the time) with this new dressing.

We're managing Sophie's diet fairly well, although she certainly has her own opinions about what she wants to eat, and they rarely coincide with what we suggest! All in all, we're finding ways to get complex carbohydrates and proteins into her diet on a regular basis, though, and hopefully that will manage her hypoglycemia well enough.

With all that has been happening in our lives (car trouble, Sophie's hospitalization, etc.) chemotherapy has not been chief among our worries. Maybe there is some grace in that. The scary has become the routine. Talk about perspective. It certainly makes me thankful, so very, very thankful that Sophie has responded as well as she has to the chemotherapy. We have seen so many kids with various types of leukemia who have struggled far, far more than Sophie has thus far. It is just heartbreaking to watch, and it makes us appreciate how well things have gone for Sophie. It is, however, a very somber reminder that we are indeed in a life and death struggle.

Posted by Susan at 09:27 PM | Permalink | Comments (2)

9:30 PM (Randall posting): Another day in the bag. Today was pretty eventful, but in good ways. We got an early start this morning to return the car that had been loaned to us by one of Susan's coworkers (thank you thank you!). Susan also cleared out most of our belongings from the Oldsmobile, which we've pretty much decided to junk somehow (if we ever figure out how one does that exactly).

After that we spent some time at the Honda dealership in Durham test-driving the new Civic Hybrid. We're tempted by the 50 mpg, particularly with our commute. When all was said and done, though, we had more reservations about the Civic than we would like, mostly about the size, so we went on our way. We had lunch near the mall and Susan returned something she had ordered online while the girls and I shopped at Nordstrom. Actually, the girls ran around (Sophie skipped) while I chased after them, but we were in a store, so that counted as shopping, I think.

We then went and spent some time at Ms. Lottie's, which is where Sophie was in daycare while we lived in Durham. Of course, Sophie did not want to leave and even had a second lunch while we were there! We finally got everyone loaded up in the minivan and drove home.

This evening we took Elisabeth to dance class and while that was going on, we test drove a used Honda Accord that I looked at yesterday in town. The dealer let us take it home for the night to think about it and, needless to say, the hook has been set. It looks as if we'll be buying a low-mileage 2003 Honda Accord under Blue Book value. We're really attracted by the reliability of the Honda and the low miles and the fair price and the not-too-bad fuel economy. I lined up our finances this evening and we'll have the check at the dealer on Thursday. What a HUGE relief this is!

All in all, in spite of the flurry of activity, we have had a wonderfully pleasant day together as a family for the first time in what seems to be ages. Everyone has been (mostly) happy and healthy and we all enjoyed our day.

Posted by Susan at 09:35 PM | Permalink | Comments (1)

10:00 PM (Randall posting): We've had a gloriously normal day. Susan left early for work and both girls slept in a bit. We had a slow morning and eventually got around to returning the car that was loaned to us from the dealer for the night. After that we ran some errands and had lunch at home, followed by naps and quiet rest. We had dinner at home and went to pick the loaner car back up.

Tomorrow we take the check to the dealer and can claim the 2003 Honda Accord as our own. We're all really, really happy with this purchase and really, really happy to have it over with. Thank you to whomever suggested donating the Oldsmobile to charity because that is quite likely what we will do.

Both girls seem to have had a great day (they even got along pretty well most of the time) and that made for a good day for their dad!

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

9:50 PM (Randall posting): Another pleasant day. Susan spent most of the day in "meetings" on the phone. As she put it, at least she could spend that time at home, instead of driving in to work just to be on the phone (she was in a conference with folks all over the US, so they were all on the phone). We finalized the purchase of our new car today, and it is still a huge relief. I'll drive it to Durham tomorrow for the first commute (eye appointment and trip to Duke).

Sophie and Elisabeth had a special treat today. Elisabeth's dance teacher (Janice Godwin) offered to teach the two of them a special "class." It mostly consisted of the girls dancing and flitting about while they listened to music and Janice encouraged them to learn dance positions and movements. It really was a great treat and it was so incredibly nice of Janice to offer. Sophie mostly wanted to jump, skip, and run, but Elisabeth was very much into dancing. Afterwards, Sophie seemed a little jittery so we got her a muffin and some Gatorade. She's not been so good about eating today. I wonder if the chemotherapy is beginning to affect her tastes. We noticed this evening that Sophie is beginning to bruise again on her knees, hips, and elbows. That's a good indicator that her platelets are beginning to drop, which for her are the first cell counts to go. We are not quite halfway through this round of chemotherapy, so that means we've got a good deal of "stuff" to get through and it may get pretty ugly.

Yesterday, the endocrinologist phoned to say that the tests they ran on Sophie while she was in the hospital were inconclusive, meaning they didn't really indicate why her blood sugars dropped so low. One test, using blood from her central line, actually showed blood sugars not too far off from normal, but still low. That particular reading seemed to confound everything else for the doctors, since the numbers weren't so low that they could reckon them against other numbers (like Sophie's insulin level, which was normal). Then he asked if we had been tracking her blood sugar at home, which we haven't, mostly because we are so intimidated and frightened of having to poke her to get the blood for the meter.

After feeling terribly guilty about this for a whole day, I dragged out the meter tonight and Susan and I tested it on each other. Our blood sugars were both normal (for post-dinner) and we discovered that the lancet doesn't really hurt (our meter uses the smallest needle on the market). We're going to try it on Sophie in the morning (who was watching the whole time Susan and I were getting squeamish about poking each other and at one point said, "I can hold your hand, Daddy.") She seemed pretty convinced that it didn't hurt. We'll see how she does in the morning!

Posted by Susan at 10:11 PM | Permalink | Comments (1)

8:30 PM (Susan posting): We're having another good day. Today Randall had a "Daddy day." He drove to Durham (in our new car) for an eye appointment (he picked out some new glasses after he found out that his eyesight is actually improving with age), and then he spent some time shopping at Nordstrom (where a big men's sale started today). He also stopped by Duke to drop off some paperwork and saw some friends. It sounds like he really enjoyed having some time on his own.

Meanwhile, we had a girl's day at home. We all behaved reasonably well and had a good time. Sophie took a pretty good nap (in spite of several phone calls during her nap). Sophie had worn some new PJs last night, and she was so fond of them, she wore them all day. Luckily, they are quite fashionable, so she didn't look too shabby. We played in the yard after dinner tonight (the weather has cooled off a lot, and it was actually quite pleasant). Elisabeth will take her last dose of amoxicillin tonight--the ear infection seems like a distant memory now that so much has happened.

Posted by Susan at 08:31 PM | Permalink | Comments (1)

11:20 PM (Susan posting): I just realized that neither of us posted an update yet, so I figure I'd better check in real quick so no one thinks we're back in the hospital. Far from it, we're all doing very well. We enjoyed a visit this morning from my friend Heather, who used to work with me at RTI and moved to Virginia a while back. She was down visiting friends and made a special trip to see us and the girls. I really enjoyed catching up, and Sophie enjoyed showing off.

Once again, the weather has been great today, and we spent a fair amount of time outside after dinner. The highlight of the evening was when the girls were in the driveway, and a truck went by that honked his horn at them. This was no normal truck though. One of our neighbors down the road started a chicken business of some sort, and he has two bright red delivery trucks. Apparently, he had the truck outfitted with a customized horn, because when he honked, it sounded like a giant rooster. For those of you who have visited us, this is the guy who used to have a perpetual yard sale with a big sign informing potential customers that everything is "as is." The next thing we knew, there were no more yard sales, and the sign itself was for sale--"as is." No takers on the sign, but now there's a chicken coop behind the house and these two trucks. We've always thought the whole thing was rather curious, so to have him drive by and "crow" at us was quite hilarious!

Sophie has a new word in her vocabulary. Unfortunately, we have no idea what it means. If anyone can share any insight into what it means if something is "very imbustible" please let us know.

Posted by Susan at 11:20 PM | Permalink

10:50 AM (Randall posting): I actually typed up a post last night (nothing extraordinary or poetic), but forgot to save it! We're all doing well, awaiting a visit from the Home Health Care nurse today some time after lunch. The girls are playing well together (mostly) and enjoying their summers. I'll post an update later in the day with a report on Sophie's counts, which are sure to be dropping.

Posted by Susan at 10:52 AM | Permalink | Comments (1)

4:20 PM (Randall posting): The visit from the Home Health care nurse went well. Our regular nurse is away at camp this week, so another came to visit, but Sophie was just as cheerful with her as she is with our regular nurse (Elisabeth went to her room, such a shy one!). Sophie's bloodwork came back good, everything is holding pretty steady. Her platelets haven't even dropped as much as we expected them to, given the bruises she's been getting. Her ANC (indicator of her immune system strength) is 1.4, well above the "worry zone" for being exposed to infection. Susan will take Sophie to the clinic tomorrow, and I'll have clinic duty on Wednesday (when Elisabeth will ride along as well--she's never been to the clinic before).

Posted by Susan at 04:20 PM | Permalink

2:00 PM (Randall posting): Susan just called to say that she and Sophie are heading home from the clinic. All seemed to go well, except that it took a while to get Sophie "hooked up" with the chemotherapy (they didn't start until 12:00 or 12:30). Sophie was complaining about her ear hurting and it turns out that she has the beginnings of an ear infection. We'll get her some additional antibiotics (the drugstore loves to see us coming) and keep a close eye on her. The biggest concern with the ear infection is that it might cause a fever, which might be nothing or might be something other than an ear infection, so it would mean a trip to the hospital just in case. Seeing as we were planning on going to the beach next week, that might put a kink in our vacation plans.

Elisabeth, Sophie, and I will go to the clinic tomorrow (for Elisabeth's first official trip to the clinic, after five months). I can't quite tell if Elisabeth is interested or not in the whole thing, but we'll find out tomorrow.

Posted by Susan at 02:01 PM | Permalink | Comments (1)

8:00 PM (Susan posting): We had a relatively good trip to the clinic today. We saw some old friends and made some new ones. There were some volunteers there for hours today playing music and doing art with the kids. It's always nice to see people willing to give of themselves that way. And as always, there was pizza. I don't know who donates that, but it sure is appreciated by all.

Sophie handled her medicines well, and they said she's definitely not showing any signs of the side effects they would be looking for as they increase the dosage of IV methotrexate (it's such an odd medicine--it looks like antifreeze or gatorade going into her). She's having pretty bad diarrhea tonight. She's had that reaction before following a clinic visit, but that's odd because the normal reaction to these meds is constipation. She still has quite a lot of her hair, and what had fallen out is starting to grow back in. It's really quite remarkable. She just doesn't look like a kid who has cancer, and on some level we find that comforting.

By the way, on the way home from dance class, we got a good look at the chicken truck tonight. He has a web site: http://chickenmanusa.com/. You know, you just can't be picky about what you find entertaining out here in the country! We also found out from some of our friends at church that the chicken man is actually not the same person who was holding the perpetual yard sale (he died, unfortunately, and his house was sold or rented to these folks).

Sophie really has been developing her own little vocabulary lately. In addition to "very imbustible," Sophie also runs through the house yelling "yiparooskie" at random moments. No idea what it means, but it clearly means something to her three year-old brain. We're assuming this is not related to the chemotherapy.

Posted by Susan at 08:16 PM | Permalink

9:50 PM (Randall posting): Today was a long day. Susan left early for work and the girls and I went the clinic. On the way up the air conditioning in the minivan seemed to be acting up, and by the time we got to Chapel Hill I was pretty certain it had died. I know it sounds like we can't get a break when it comes to car trouble, but there you go. The clinic was unusually busy today, which made for a generally stressful time, especially with two girls there.

On the way in, out of the blue, Sophie piped up and said, "I like doctors. I like nurses. I like hospitals." I'm glad she's so enthusiastic about this. I remember Dr. Gold telling us at the very outset that there would come a day when Sophie would be eager to get to the clinic, and sure enough, he's right. Even though Sophie pitched a holy fit when it was time to give her the shots today, afterwards she insisted that she still likes doctors and nurses and hospitals.

After we got home, a friend of Susan's from work came and took Elisabeth to the movies. That was a nice treat and a special thing for Elisabeth to do all alone. I haven't actually had a chance to debrief from Elisabeth's first trip to the clinic, but I'll be curious to hear what her thoughts are. When Sophie got her shots, Elisabeth insisted on being in the room with us, which was pretty surprising. I don't know that I would have wanted to be in that room if I were her. She really, really loves her sister, though. I imagine that it's helpful for her to know and understand a little bit of what Sophie goes through.

Posted by Susan at 09:57 PM | Permalink | Comments (1)

9:00 PM (Randall posting): We've all had a good day today. Sophie has been running a low-grade temperature (99.5 or so) off and on all day today, but she hasn't been any worse for the wear. She continues to have very loose stools, which seems pretty unusual given that we should expect the opposite with all the vincristine she's been taking. There seem to have been no side effects of the PEG shots either, although we're curious to see if there is some delayed reaction to the shots that trigger her low blood sugar (it's a theory we're working on). The girls played really well together today as well.

The major accomplishments of our day today was arranging to donate the Oldsmobile to charity, getting the air conditioning in the minivan straightened out (thanks to our neighbor across the street) and having a younger friend of ours from church (Chris Brock) over to dinner. I also had a looooong conversation with our newly-assigned case manager from United Health Care (our insurance) and that really helped her (and me) get a sense of how our coverage is working out and what could be done to make it work better. Given the level of our reliance on insurance, it's nice to have somebody on their end working with us to keep everything straight.

Sophie's latest "thing" is to compliment everyone for everything. How you look, how nice you are, how tall you are, how well you eat, etc. She notices everything and compliments us on it (for example, "I like your arm" or "I like your hair"). It's sweet, but also kind of surprising when she turns to you at the dinner table and says, "You're a gooood eater!" Speaking of eating, her tastes are all over the place. Salt is always very popular (as in licking it off her hand), and today her food of choice was Lipton chicken noodle soup, although she does not like the chicken. I haven't checked, but I'll bet the sodium content of the soup is also pretty high. She refused milk this morning, saying, "It tastes funky to me." Go figure.

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

5:45 PM (Susan posting): We're doing well today. Most of us slept in this morning (little miss sunshine was awake at 6:30, but I went back to sleep after I got Sophie settled). We had a quiet morning, and one of our friends from church called to say she ahd picked some squash for us. The girls and I went over around 11:30 and caught them finishing lunch. Of course, she wanted to share, and the girls wanted to taste some of the vegetables she had cooked, so we had a nice meal. Randall really missed out. We hung out and talked and had a great time, and before we left, we took a tour of their fairly large garden. The girls enjoyed riding in the golf cart, and they definitely didn't want to leave when it was time to go home. We had a great time. Sophie napped for three and a half hours, so it was a quiet afternoon. We're looking forward to dinner at home and some relaxing time tonight.

Some friends of ours are coming into town late tonight, and we'll spend tomorrow and Sunday morning with them. Randall's making good progress on his sermon today, so he should be able to spend lots of time with them. His sermon will be in the narrative style (turning a Bible passage into a more detailed story), and I really like that kind, so I'm looking forward to it.

Posted by Susan at 05:57 PM | Permalink

10:00 PM (Susan posting): We've had a full and satisfying day. It began when Sophie slept through the night in panties for the second night in a row. She's been doing very well with potty training during the day, but we had been keeping her in pull-ups at night. There were some nights when she would be dry in the morning, but a fair number also when she was wet. She insisted the night before last on sleeping in panties, so we gave it a try. Success!

Our friends arrived this morning, and we had a nice visit all day with them. Sophie was quite a show-off and really wore herself out by naptime. We had a quiet afternoon while she rested, and I learned to knit! I'm totally obsessed with it now, so when we went out tonight, we stopped by a craft store so I could get my own yarn and needles (and a book).

Sophie has done well today, but she's fussier than normal--our friends got to witness several tantrums. She also isn't enjoying many of her normal favorite foods, so we've been at a loss getting her to eat. She loves salt and salty foods, and one of the doctors suggested that chemo can dull the taste buds and change kids' food preferences. She said lots of kids end up wanting spicy food because they can actually taste it. I had some spicy noodles on my plate at dinner--Sophie snitched one, loved it, and finished the plate. We'll have to think about things she might enjoy that have more flavor.

Tomorrow we head to the beach for a short vacation. It's going to be a packed afternoon getting ready to go, but we are really looking forward to the time away, and we wish we could stay longer (we have to be back by Thursday morning for Sophie's blood test, and then she has chemo on Friday).

Posted by Susan at 10:17 PM | Permalink | Comments (2)

3:45 PM (Randall posting): The minivan is loaded and we are soon going to head out (finally--it always seems to take us such a long time to get ready to go somewhere). If all goes well, we'll arrive just in time to go to bed, which sounds pretty appealing right now! We do plan on posting while we're away, so those of you who check in every day will be able to keep up with how things are going. Although we are looking forward to this "break" we know that we travel with more uncertainty than normal, and we're all a little nervous. Hopefully this vacation will bring us what we need as a family, a chance to catch our breath and just relax, if only for a day or two.

Posted by Susan at 03:44 PM | Permalink | Comments (4)

7:00 PM (Susan posting): We're here! We're having a great time. We arrived at about 7:00 last night, and Elisabeth couldn't have been more excited. We're in a nice condo (kitchen, living/dining, two bedrooms, and two baths). After we got unpacked, we drove down to the grocery store, and we picked up some beach towels at one of the gaudy beach stores. It turns out we forgot a lot of things (beach chairs, gazebo, basket to carry things in, and it seems like quite a few other things), but not having them has meant less to carry (to and from the car and to and from the beach). The girls were too excited to go to sleep, so they were up pretty late.

Of course, they were up at the crack of dawn, and we headed down to the beach after breakfast. Elisabeth can't get enough of the water, and Sophie is pretty scared of it. When the waves come near her, she lifts her little feet up and down and starts crying, never thinking that all she has to do is back up. We fill up buckets of water, and she plays merrily by the blanket. A little before 10:00, Sophie and I headed inside for a potty trip and a snack. We didn't mention that she had another low blood sugar incident during Sunday School yesterday (I swear, we fed her breakfast!), so we're trying to be extra careful (but she's also being extra finicky). Then Elisabeth and I went over to the pool while Sophie and Randall spent more time at the beach. The pool has a water slide you go down on an innertube, and Elisabeth loved it. I liked the pool better too. We came in for lunch, and Sophie took a short nap (too short!), while Randall and Elisabeth went back to the pool. Despite re-applying sunscreen, they both got burned. Sophie and I are fine though. Once they came inside, everyone but me took a nap, and we just finished dinner.

We're thinking we'll go for a walk on the beach fairly soon, and then we'll head to the pool. We have to change Sophie's dressing tonight, so it seems like a good time to let her go swimming (we basically have to apply a larger dressing over her regular dressing, with her "tail" coiled up inside it). Once we have her fixed up this way, she can swim as much as she wants, but we have to change the whole dressing as soon as she comes out. If we're going to have trauma tonight, we might as well enjoy swimming beforehand. Randall was just outside making a phone call (our cell phone reception is very weak here), and he says it feels wonderful outside. He was just making reservations for a dolphin watching boat ride tomorrow. We're excited!

I've been trying all day and last night to get through on the modem number, and this has been my first opportunity. If you don't hear from us tomorrow, it's most likely because I couldn't get online--so don't worry! Thanks for all the comments, we love hearing from our friends and family.

Posted by Susan at 07:15 PM | Permalink | Comments (4)

10:30 PM (Randall posting): We are all exhausted! We had a wonderful day, even though the weather was not exactly "beach-worthy." It was overcast and sprinkled on and off all day, but we packed all kinds of fun in anyway, even if we never made it to the beach or even the swimming pool.

This morning we got up early and went on a dolphin cruise that left from Beaufort (for those of you who have been wondering where we are, we're staying at Atlantic Beach). The coolest thing about our cruise was that it was a catamaran, and Elisabeth got to ride for part of the way in the "net" between the hulls at the front of the boat. The dolphin part was a huge disappointment. I think everyone but Elisabeth saw dolphins, but that wasn't surprising because the dolphins were really far away. We did get to see a wild pony on an island closer to Beaufort, but other than that the cruise was a bust. We had a great time riding the boat, though.

We had lunch in Beaufort at a restaurant recommended by some friends and that was quite pleasant. We spent some time afterwards browsing in some shops and driving through Beaufort, but before too long it was clear that we were all pretty tired. We came home and Susan and Sophie took a nap while Elisabeth and I went grocery shopping and scouting out Putt-Putt options for later today.

Once Susan and Sophie woke up we all went for a ride, had dinner at a pizza place in Emerald Isle and spent the rest of the evening at "Jungleland" (which has miniature golf as well as various "State Fair" type rides and an arcade). We played Putt-Putt, rode bumper boats, went on a big slide, and wasted a handful of dollar bills on Skee-Ball and video games. It was a blast! By the end of it all, Sophie was so tired she was sucking her thumb, and I thought I might take up sucking my thumb too!

Like I said, we didn't do much beach-type stuff (none of us put on a bathing suit all day), but we had a great great day. We'll wrap up some stuff tomorrow and head home, but we have certainly had a wonderful few days together as a family.

Sophie has been such a trooper through all of this. I worry about pushing her too hard, but she just takes everything in stride. She is so cute because she is so curious about things (like riding in a boat and going on a ride at Jungleland), but she is also so very, very cautious. She never does more than she think she can (neither does Elisabeth), but it's so clear that she wants to experience new stuff.

Posted by Susan at 10:43 PM | Permalink | Comments (1)

5:15 PM (Susan posting): We're home! Leaving today was good timing. The weather yesterday was overcast, and overnight it got downright nasty. It rained hard all morning, and showed no signs of letting up over the next few days. So even if we culd have extended our vacation, we would have been stuck inside most of the time.

It was a long drive home, and we're all tired and cranky. We can't bear to get back to our normal routine, so instead of cooking dinner tonight, we're going out and will pick up a few groceries. Tomorrow, it's back to reality. The nurse (Amy) will be here in the morning to check Sophie's blood levels in preparation for Sophie's clinic visit on Friday.

Posted by Susan at 05:16 PM | Permalink | Comments (1)

4:00 PM (Randall posting): I just got off the phone with the clinic and Sophie's counts are all looking good. Her ANC count is 0.7 (or 700, depending on which scale you're used to). This means that her immune system is definitely becoming compromised. In fact, she's right at the borderline where we need to begin taking precautions about exposure to infections. She's also right at the cut-off for a pause in the treatment, but we'll go ahead and do the chemotherapy tomorrow (methotrexate and vincristine through her IV and methotrexate through a spinal tap--because Friday is not a normal sedation day at the clinic, Sophie will be treated with "conscious sedation" rather than the usual "Milk of Amnesia.")

In this particular phase of treatment, Sophie is supposed to be receiving increasing doses of methotrexate, but since she is approaching toxicity, she will only receive the same dose she received last week. In some ways we are grateful to have her counts where they are at, rather than have them drop really, really low sometime between clinic visits and be unaware of how weak her immune system has become. Some kids develop painful mouth sores and the like during this phase, which are simply (!) another indicator of toxicity, but Sophie hasn't developed any such signs yet.

We have another week and a half of this phase in the protocol, so we have a ways to go yet. Please remember to keep us all in your thoughts and your prayers as we continue this patient walk through the protocol.

Posted by Susan at 04:25 PM | Permalink | Comments (1)