Sophie's World

10:20 PM: We've had a good weekend. Sophie is doing quite well, and it's been nice to have a break from so many of her medicines. As much as I want her counts to be back to normal (ANC > 1.0), I wouldn't mind so much if we had another week off from the chemo (but then again, I'm anxious about not having her take chemo for so long--it's what keeps the cancer away). Sophie will go back to day care tomorrow, and I'll go back in to work for the first time in over two weeks. I think Randall's looking forward to having the house to himself again. This has been a difficult couple of weeks for him (for all of us, really, but he seems to have taken it extra hard), and I think getting back to our normal routine will be good for him.

I don't think Randall mentioned it, but last week, we finally made some headway with the billing problems we've been having with our local hospital. We went to that ER five times over a one year period, and they have been billing us for the difference between their contracted rate (which our insurance paid) and their regular rate (which we shouldn't have to pay--that's the purpose of a contracted rate). Our insurance company kept trying to solve the problem by sending letters explaining about the contracted rate, but that wasn't working, and every time Randall called, he had to talk to a different person, who had to be told the whole story from the beginning. This last time Randall called, he insisted that the only thing that was going to resolve the problem was to have one person assigned to it. They finally listened, and a supervisor said she would handle the case, and she would start by having the insurance company pay the disputed amount so that it no longer is our problem. If the insurance company decides to take a loss, they can do that, or they can decide to fight it, but if it's their money instead of ours, they'll be more likely to take it seriously. Finally--a resolution we can live with. And it only took one year!

Update on T'yanna: She started chemo on Friday, and her mom said that Friday night was the first night she started to sleep well. The reduced pressure from the colostomy is starting to make a difference. Melissa said if things continue the way they have been, they plan to train the family how to manage the colostomy bag and the stents, and T'yanna might be able to go home as soon as Thursday. That would be great. Two weeks in the hospital in that small room is a long time.

Posted by Susan at 10:19 PM | Permalink

10:00 PM: It was so nice having things back to normal today. Sophie fussed about going to school (so I hear, I wasn't there!), but she eventually went and had a great time. Elisabeth got her report card today and got all A's in her three graded subjects and S (for satisfactory) in all her other subjects. Her mid-term report showed an A- or B+ in math, so we were glad to see she brought it up. Her teacher said she continues to be distracted sometimes but that she's a smart girl and she'll do fine. We're so very proud of her!

Sophie brought home a sheet from her teacher asking us to write down her full name, birth date, address, and phone number. They want to have the kids memorize these things in preparation for kindergarten testing. She seems awfully young for that, but she's not starting kindergarten this fall, so I won't worry about it. I have to remember that she has been in the four-year-old class for several months now (even though she's still three), so some of the things they do may be beyond her. I wasn't even sure Elisabeth knows her address and phone number, but I asked her and she does. I'm certain she didn't know that when she started kindergarten in Durham.

The girls had a hard time going to sleep tonight, especially Sophie, because it's storming outside and they were scared of the thunder. It's hard dealing with kids when they're totally irrational. I don't know what Randall said that finally calmed Sophie down, but I know it involved checking on her later, because she kept asking me when Daddy was going to check on her. I think she's finally asleep now. She's been fighting any form of sleep lately, especially naps. Just like we did with Elisabeth, we call nap time "quiet rest" in the hope that without the negative label, she'll play quietly in her bedroom and fall asleep on her own. Today she said to Randall, "You know about quiet rest? That's just naps, and that's all mixed up!" I think she's on to our tricks.

I talked to Melissa about T'yanna tonight. She said T'yanna seems to be feeling pretty well. The nurses showed them how to handle the colostomy bag and stents so they'll be able to do it at home. The doctors say that once her pain is under control, she should be able to go home (as early as Thursday). Melissa says T'yanna is pressing the button to give herself morphine a lot less than she used to, but she does still have to press it (it automatically doses her every hour, but she can give herself an extra amount every 15 minutes). I tried to encourage Melissa to take care of herself as well as she's taking care of T'yanna. She hasn't been home since they were admitted on 3/22 (and her husband has only been home once whe they were first admitted), and I know if they traded off that sleeping in their own bed and showering in their own bathroom would make a world of difference for them. I also reminded her of some of the resources they have there (free massages on Wednesdays, etc.). I hope she'll do something to give herself a break before she totally wears herself out. I'm so worried about all of them.

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

9:30 PM Today has been an especially full day. Susan and I worked at home today, and we must have been very productive (or at least very busy), because the day went very quickly. We picked up the girls this afternoon and ate out before dance class. Elisabeth was pretty grumpy and complained about a stomach ache, but she agreed to dance anyway. By the time the day was done, she had quit complaining about it, so there you go.

We saw T'yanna's sister and family this evening at dance class. This was the first time Melissa had left T'yanna at the hospital in about two weeks. I'm sure it was hard for her. T'yanna is likely to come home this Thursday, and it sounds like she'll have pretty serious home health care. This is all very hard for her family, and for her. She's in a great deal of pain, and is physically uncomfortable (she cannot stand by herself and laying flat is uncomfortable). It also sounds as if the doctors are trying everything they can to treat her. St. Jude's was in the discussion for a while, but eventually it was decided that because of the support of her family here, it was better to keep her here. I'm confident that the people at UNC are working very, very hard in the face of incredibly difficult odds. In the car on the way home, Susan said it best when she sighed, "I don't even want to imagine what that family is going through." It's just too painful and too sad.

As for our family's situation, Amy from Home Health care came this morning and did a blood draw. Sophie's counts came back later this afternoon and her ANC is only slightly higher at 0.7 (it was 0.6 last week). The upside is that there is still no chemotherapy this week, but Sophie is scheduled for a spinal and chemotherapy next week. If her counts are still low at that point, they will administer another drug (leucovorin) to protect Sophie's kidneys from the chemo drugs.

One thing we accomplished today was to create chore charts for both girls. One of Susan's co-workers forwarded a web-based program for chore charts. I filled one out for each girl and they were both very excited about working away on them. Here's the link http://www.dltk-cards.com/chart/. The best outcome of this chore chart is that we may get Elisabeth to actually practice piano every day (she picks it up very quickly, but she rarely is enthusiastic when we ask her to practice). Our goal is to get her to memorize "Spoonful of Sugar" from Mary Poppins by Easter (her recital is in May). Frankly, I was a little intimidated by the music, thinking it was too hard for Elisabeth (she's only been playing since June), but she actually does okay with it!

Also keeping it in the family, Susan's grandmother was admitted to the hospital today. It sounds as if she has some kind of viral thing, and with her already compromised health situation, it doesn't take much to weaken her. Hopefully, she's already on the mend and will be home again soon.

Whew! That's a lot to update!

A quick post-script: Tonight Sophie wanted to watch a video before it was time for bed. She kept insisting on watching "Allison World." Susan had no idea what she was asking for, but I knew--Sophie got hooked on a Disney sing-along video at the hospital, which included the "Merry Un-Birthday" song from Alice in Wonderland. That's what she wanted to watch.

Posted by Randall at 09:33 PM | Permalink | Comments (1)

8:55 PM Yesterday was Susan's birthday. She went in to work, but don't cry for her--they had a delicious birthday cake for all the employees with birthdays in April yesterday and Susan got to bring the rest of it home. We opened presents last night (the girls helped, of course), and I made jambalaya for dinner, which Susan had been hungry for. It was the first time (I think--if it wasn't the first, it was the first in a long time) that I made jambalaya, and even though Susan calls me a Cajun food "snob," I thought it turned out great. We have tons of leftovers, so if you're local you can taste it for yourself!

Susan and I both went in today, and Susan and the girls are at a women's meeting for church (I hope the girls are behaving). I now have only one more class left until I graduate. There is no class next week because it is Maundy Thursday, and the week after that is the last week of classes. I have two very short papers left to write, and I will be done. Graduation is Mother's Day weekend, and I cannot wait!

I never know who is reading our little updates, but I keep hearing from many of you that you read even if you don't post comments. It's a little weird, then, when someone walks up to us and says, "Oh, how did this-or-that go?" and we're not sure how much that person knows. . . But, all that is to say that if you are in the New Mexico area, I will be commissioned as a probationary elder in the NM Conference of The United Methodist Church on Friday, June 2nd at the Glorieta Conference Center north of Santa Fe. It would mean a lot to me to have people supporting me as I take this next big step in my ministry.

On a note closer to home, we are trucking along just fine. Sophie is doing well, chatty and cheerful as ever. Her hair is growing perhaps a little more slowly, but I think it looks as cute as anything (granted, I may be biased). Elisabeth is growing and maturing right before our eyes it seems. She has just a few more weeks left in the 2nd grade. Hard to believe that she was Sophie's age when we moved to North Carolina, but since Sophie is wearing some of Elisabeth's clothes and shoes from that time period, we can't deny it.

We heard from Susan's mom that Nannie came home from the hospital. They sounded happy to be home on the message she left and are getting settled. Mary said she couldn't remember when she's been so tired. Staying with someone in the hospital will certainly do that to you.

T'yanna was also expecting to go home today. I can't express enough how heartbreaking her situation is for us. We keep T'yanna and her family in our thoughts and prayers, we cry for her and for them, and we pray for strength and courage and hope.

Posted by Randall at 08:55 PM | Permalink | Comments (1)

10:25 PM A quick post from the Hampton Inn in Asheboro, NC. The Carolina Pals program is sponsoring a zoo trip for the kids from UNC and their Carolina Pals. We've never been to the NC Zoo, so we're really looking forward to tomorrow. We figured that since we have to be at the zoo so early to meet up with folks, we would just go ahead and stay at a hotel tonight. Thankfully, the hotel has wireless. We got here around dinner time and ate at IHOP (Elisabeth picked it out). We discovered that the hotel also has an indoor pool, so we bought both girls a cheap swimsuit at WalMart. Elisabeth splashed around in the water (I won't call it "swimming") and Sophie was happy to sit on the edge of the pool and get her feet wet. She kept gingerly holding on to her dressing, like she was afraid it would magically fly off just because she was in the vicinity of the pool.

For the past week, there has been a forest fire (? or is it a wildfire?) near Sophie's school. On Monday, it was quite close--so close in fact that when I picked her up, there was smoke and ash flying through the air. Unfortunately, the fire was mostly inaccessible, and the fire crews did what they could, short of putting out the fire completely. Depending on the wind, the fire would pick up and smolder and move a little bit. It sounds as if it pretty much got out of hand again today--I picked Sophie up early so we could get on our way and I could tell then that it was smoking a lot more, and a fire truck from Spivey's Corner passed us as we left. We live in such a small community, aside from the fact that Sophie's school was evacuated, we know families who also live in the vicinity of the fire, so we're hoping for the best tonight. It is supposed to rain tomorrow. We hope that will help.

The girls are very excited to be on this little trip. Honestly, I think Elisabeth is just as excited about staying in a hotel as she is about going to the zoo! After the zoo tomorrow, we're going to drive up to Greensboro and visit with a friend of ours who graduated from Duke Divinity last year. Her youngest daughter was in dance class with Elisabeth in Durham, so it will be a mini-reunion.

Posted by Randall at 10:25 PM | Permalink

8:00 AM: One of my co-workers asked me this morning whether I had a good weekend. Without hesitation, I replied, "Yes!" Randall posted an update Friday from our hotel room in Asheboro about our plans for the weekend. We ended up having kind of a rough night Friday night. We just had the one room (sometimes we get two adjoining rooms so that we can stay up and talk after the girls go to bed), and we paid for an in-room movie (Tim Burton's Corpse Bride, which we all enjoyed) and then the girls and I went to sleep while Randall worked on his sermon (I slept with Sophie and Elisabeth was with Randall). Starting at about 2:00 in the morning, Sophie woke up every 15-30 minutes having to go potty or wanting something to drink or just complaining, and I started feel really nauseated. We think that Sophie was starting to get a urinary tract infection, because she was going so frequently (but in such small amounts) and said it hurt. Everyone eventually woke up and we headed out to the zoo. Storms were passing through, so it was kind of a crummy day, but that also meant the zoo wasn't very crowded, and it never rained very hard. The Carolina PALS program paid the entrance fee for everyone, and Sophie's PAL Adrianne was there and walked around with us. Luckily, we had decided to take our old stroller, because Sophie really wasn't up to walking. We spent the morning on the "Africa" side of the zoo and then joined everyone for lunch. That's when it started raining, unfortunately, but I think everyone managed to find picnic tables under shelter. The catered lunch was excellent, and we enjoyed getting to know Adrianne better. After lunch, I went back to the car to take a nap while Randall and the girls explored the "North America" side of the zoo. It was too hot to be in the car without some air on, and in my attempt to conserve gas, I ran the car in "accessory" mode while I slept. about an hour and half later, I woke up when the car beeped and I realized my mistake. The battery had run down. Just about 5 minutes later, Randall and the girls came back and I had to confess my error. It took Randall a long time to find someone with jumper cables (note to self: buy jumper cables for the car), but someone who was parked in the parking lot on the other side of the zoo agreed to come back over. About 45 minutes later, when he still hadn't arrived, Randall searched again for help and found a ranger who was able to get us going. What an adventure!

Once we got going, we drove to our friends' house in Greensboro. It was so good to see them again. Randall knew Ann from Divinity School, and we had also gone to church with them when we lived in Durham. Elisabeth had really bonded with their youngest daughter Caroline when they took dance class together. Both of our girls had fallen asleep on the way there (it was about a 50 minute drive), and Sophie clearly hadn't gotten enough sleep. She was really out of it when we arrived. I was pretty worried about her. I held her for a long time, and then I put her down to sleep in another room. By the time dinner was ready, she had pretty much perked up, although she didn't eat much. Our two girls really anjoyed playing with their three girls. Their oldest is just finishing middle school, I think, and she did a great job mothering the other girls while us parents got caught up. We had a such a nice time, we didn't want to leave, but Randall still had some prep work to do, so we headed out. The girls were awake for the whole trip home (over two hours) but went to sleep pretty easily once we got home (after 10:30!).

The Sunday service went well. Attendance was high yesterday--not a big surprise, I guess. Sophie still felt a little crummy. We called her UNC hospitals to see whether we needed to take her in. They said to give her plenty of fluids and Tylenol and if that didn't seem to make her feel better we could bring her in. She definitely got better as the day went on. She was tired during church (and I was still not feeling totally well), so she and I came home to nap after worship instead of staying for Sunday School. It was a nice quiet afternoon, and Randall and I enjoyed our "date night" while Ashely from church stayed with the girls. I'm at work this morning, and Randall was looking forward to having us all out of his hair so he can do his Monday routine of getting the house in order.

Update on T'yanna: I just called the hospital, and she's still there. She was expected to go home on Thursday last week, but her ANC was really low, so the risk of infection was too high. As it turned out, she ran a fever Thursday night, so even if she had gone home, she would have had to come right back. Melissa says she's feeling much better and the tumor seems to be shrinking, since it's no longer blocking her urinary tract. She's also no longer on morphine but is instead just taking codeine twice a day. The chemo is deifinitely affecting all her blood counts (which is a good sign that it's also affecting the cancer!). She's had several red blood cell and platelet transfusions. She had been taking heparin shots because of a blood clot that had formed in her leg, but with her low platelet count, they had to put a hold on the shots. T'yanna is feeling well enough to be out of bed and spent nearly two hours in her wheel chair yesterday (she can't walk because of the clot, I think), but the risk of infection has been too high for her to be out of her room. She really wants to go out in the hallway, so Melissa is hoping the doctors will let her go out with a mask today. Sophie has treatment in Chapel Hill tomorrow, so we're hoping to stop by and visit after we're done.

Posted by Susan at 08:13 AM | Permalink

1:45 PM: Treatment went great today. We got there very early (just past 7:00) and were first in line for anesthesia. She was a little upset about going into "the room" but I covered up her head with her blanket, and she got over it pretty quickly. Once again, she was totally out of it when she came to and had me in stiches with everything she was saying and doing. We were actually completely done by 8:30, and her Carolina Pal Adrianne was there, so they played together for a while before we took off. Then we stopped by to see our friend T'yanna who is in the hospital. While Melissa (T'yanna's mom) and I visited, Sophie got to play with the student nurse who had spent time with her when Sophie was hospitalized. Adrienne seemed so surprised and pleased to see Sophie again, and they had a fantastic time together. T'yanna's doing a little better, and last night she was lucky enough to be moved into the big corner room we had when Sophie was admitted. I was so pleased they got that room. It's so much bigger, and it has that double sleeper, which will be nice for them because both parents have been staying with T'yanna at night. Melissa hadn't been home in a week, so I convinced her to come back with me (while T'yanna's dad stays with T'yanna), and I dropped her off at home and then met Randall for lunch. Sophie's napping now.

Sophie's counts are great, so she's at absolutely no risk for infection, but we did find out that she has a urinary tract infection. She was having pain and frequent urination this weekend (although it had gotten a lot better once we gave her plenty of fluids, so we thought perhaps she didn't really have infection). They're going to call in a prescription for augmentin and we'll pick it up tonight before dance class. She resumes all her chemo today, with some of it at half the regular dose. She'll have a blood test in two weeks, and if her counts are still high enough, they'll slowly increase the dose.

Posted by Susan at 01:50 PM | Permalink | Comments (1)

6:40 PM: It's been a great weekend. The girls were both home on Friday, and we've had this great epiphany lately that instead of trying to multitask and take care of things around the house and take care of the girls at the same time, we should rearrange our time to create some "protected" family time where we all hang out together and not try to do anything but enjoy each other. The weather has been beautiful, so we've started taking walks on the path near our house in the evenings. Elisabeth rides her bike, and Sophie rides her tricycle, and we walk behind them (sometimes we have to give Sophie a little push). We all enjoy the time together, and the girls are poope by the time we get home, so they go to sleep really easily at bedtime.

We had a really nice service at church on Friday--not lots of people, so it was very intimate. Randall and I sang a duet together (he sang the melody and I sang alto). We had never sung together before, and I really liked it (I think those who heard it did too!). The services this morning were nice, and Randall did an excellent job with the sermon--another narrative-style one (my favorite!). My heart just swells to see him up there sometimes. Some folks from church invited us over for lunch, and we had such a good time. It was hard to come home, but Randall had to prepare for confirmation class tonight (which is where he is now). The girls are outside playing with our sitter ("Royal Megan" as Sophie calls her--reversing her first and last names), and when Randall gets home, we'll go out for our weekly date night (and grocery shopping--how's that for romantic??).

Sophie did pretty well with her steroids this week. She took the last dose last night, so she's still tired, irrational, and hungry. It should wear off soon. Elisabeth will be home all week for her spring break--wish us luck! Sophie will go to day care this week, so at least we won't have to entertain two kids all the time!

I called T'yanna's mom, Melissa, tonight. They're still in the hospital, because her counts are still too low to come home. She's been off chemo for 2 weeks, but it just takes a while for her body to recover. Her ANC had been 0, but today it was 0.1, so maybe it will continue to rise. Dr. Gold said they might be able to come home in a few days. She's ready! She's able to walk pretty well with a walker, but she lost a lot of muscle tone from being completely bedridden for 3 weeks. Melissa sounded very positive and happy--please continue to keep them in your thoughts and prayers.

Posted by Susan at 06:40 PM | Permalink | Comments (1)

10:38 PM I'm sure by now many of you regulars are wondering what we have been up to! Well, in one sense, not much, but in another sense, quite a bit. We're all doing very well, which means that we have had no major medical issues in the last several days. Elisabeth has had spring break, so our routine has been upset a bit, but not in a bad way. I took Elisabeth to campus with me on Tuesday for our graduation and baccalaureate rehearsals. She was very excited and "grown-up" to go to Duke and sit with me the whole time. On Thursday, Elisabeth and Sophie spent the day with our friends Bob and Patti. Susan and I went up to the Triangle together--I for Closing Convocation (final worship service of the academic year) and she for work. We met for lunch (sushi!) and sat around for a while at Foster's (a local deli/home goods store) before my class. Susan then went to class with me (my very last class at Duke--how appropriate) and afterwards we went to the Senior Banquet. We got home late last night (the girls spent the night at Bob and Patti's). Today, I had promised to take Elisabeth to the beach and it didn't take much convincing to get Susan and Sophie to come along. We had a terrific time, although Susan got a bit sunburned and we all needed a shower/bath when we got home (I'll be taking mine shortly). We collected all kinds of sea glass and shark's teeth, which was pretty cool. All in all, it was the most pleasant beach trip we've ever had--the place was deserted, it wasn't too hot and there was plenty to keep us entertained. We only wished we could stay longer! Susan may have mentioned, but we are trying to be more deliberate and intentional about how we spend time together as a family. I'd like to think we're doing well with that--at the very least, we're enjoying ourselves!

Posted by Randall at 10:37 PM | Permalink | Comments (2)

9:09 PM Okay, okay. We've been away too long, I know. Somebody commented today that it had been a while since we posted (hi, Sylvia!), I have been guilted into posting. We're all doing well. I'm settling into post-seminary life, I think. I've done errands and visiting this week and made quite a dent in Sunday's sermon, and it's only Wednesday! This evening we went out to dinner with some friends from church to support the "Fair Share to Benefit Autism." It was a good time. On the way home, it just poured rain (which is a new experience for us, it's been so dry here).

Sophie is doing very, very well. She's got some kind of cough and upper respiratory thing going on, which is more of a nuisance than a worry, and there has been no sign of fever at all. Amy from Home Health will come tomorrow to do a blood draw and we'll find out then how Sophie's counts are doing. She's been on 1/2 dosage of the chemo this round, and if all goes well tomorrow, they'll bump it up a bit. She goes back to the clinic in two weeks for her monthly visit. Her hair continues to grow back, it's as thick as ever and even has some wavy/curly thing going on in the back--that's totally new since treatment. Of course, Sophie thought her hair would grow back green, so I'm pleased that it's grown back somewhat curly instead.

Elisabeth is trucking along with school. Between spring break last week and a field trip this week (and "Spring Fling" today), there's not been too much going on. Granted, Elisabeth's (and Sophie's) dance recital is next week (dress rehearsal is this Sunday), so we're all excited about that. Elisabeth is really into dance, you can tell when you watch her that she just enjoys it in such a natural way. Sophie likes it, but she's still young. I don't think it means as much to her as it does to Elisabeth.

Susan's had a busy week. She finished a two-day training today, and will go in tomorrow (making it four days in a row--I don't know how she manages). We're hoping to go to a concert on Friday to see my favorite Christian artist, Andrew Peterson, in Chapel Hill. If any locals are interested, he's going to be at Christ UMC in Chapel Hill at 7:30pm on Friday. I'm really looking forward to it.

Well, that's been our week thus far. We'll probably post tomorrow to give everyone an update on Sophie's counts. We got word earlier this week that our friend T'yanna is back at home, which I'm sure is a relief to her and everyone in her family. They had been at UNC Children's Hospital since Sophie had been admitted way back when. We continue to hold T'yanna and her whole family in our thoughts and prayers.

Posted by Randall at 09:08 PM | Permalink