Sophie's World

12:15 PM: This has been a tough week. I don't think either of us had any idea how hard T'yanna's death would hit us. T'yanna was in so much pain and suffering that I wouldn't have wished for another day of that for her, but seeing her parents go through all of this is hard to see. And through all of that, they took the time to tell me specific ways they have appreciated our friendship. They have been shown amazing strength and grace (more than I have, I think). It's been so easy this week to put ourselves in their shoes. The funeral was especially difficult. There was a slide show with tons of pictures of T'yanna at various times in her life. The ones where she was bald or in the hospital made my eyes well up with tears every time, because it was so easy to see how that could have been Sophie. It was especially difficult to see Melissa and DeAngelos stand at T'yanna's casket before it was closed, covering her with a blanket, kissing her forehead for the last time, their shoulders shaking with quiet sobs. It just breaks my heart to think of how they must be feeling.

This isn't the first time a child we have known has died because of cancer, but this has hit us especially hard because we had felt so close to the family. Whenever we hear of a death, it forces us to stare the threat we're facing head on, but this time it's been harder to move on. Both of us are completely distracted, forgetful, and unmotivated to do anything but spend time together. I've come to realize that I've been soldiering forward for months now without taking much of a break. We leave for vacation tomorrow, and I worked as hard as I could this week so that I wouldn't need to take any work with me. Randall arranged to have someone preach next Sunday, so he won't have to worry about writing a sermon during the week. Our time will be completely free for fun and relaxation. Randall's dad (and his wife Donna) will be there part of the time, so we will get to go somewhere nice to celebrate our tenth anniversary, and we'll get a little help watching the girls. I really hope this will help rejuvenate all of us so that we'll be in better spirits when it's time to face the world again.

Sophie's been doing fairly well. The steroids are affecting her a lot more this month than last month. I seem to recall that the side effects were hardly noticeable last time, but this week, she's definitely not been herself. Her current food obsession is goldfish crackers, preferably baby goldfish (she is not persuaded by any attempt to convince her that they all taste the same). There has been at least one day that she ate nothing but goldfish. She's also been completely irrational and emotional at times. Yesterday, she picked out a cute little skirt from her drawer that had been Elisabeth's. It was a size 5 and unfortunately, when she put it on, it was way too big. Well, nothing else would do, and it was the end of the world that she couldn't wear that skirt. I finally found a way to pin it up with a couple of safety pins, and she eventually calmed down. Tonight is her last dose of dexamethasone, so we're looking forward to having her back to normal (when she's only occasionally hysterical and irrational).

Posted by Susan at 12:16 PM | Permalink | Comments (3)

8:45 PM We're home after what seemed like a long, long break from "normal" life. We had a wonderful and wonderfully relaxing time away. The cabin we stayed in was absolutely perfect and stunning (you can see some pictures and information here). We really appreciated being close enough to Asheville (7 minutes to downtown) that we could be completely lazy and then decide spur of the moment that we would go into town. One discovery that we made (and a spur-of-the-moment trip) was Kamm's Frozen Custard, which is in the Grove Arcade.

We did not do much of the terribly tourist-y things to do in Asheville, like seeing the Biltmore or things like that. My dad and his wife, Donna, came and spent several days with us, which was very nice. On Wednesday, Susan and I left the girls with them so that we could have a night away--sort of like a "honeymoon" in honor of our tenth wedding anniversary. We stayed at the Grove Park Inn, which was incredibly expensive and led to a serious case of buyer's remorse on my part. It was, in fact, the nicest hotel room I have ever stayed in, and the bathroom was unbelievable, but in the end, it was still a hotel, and it was clear to Susan and me that we were certainly out of our element there with the jet-set crowd. We both decided that a cozy bed-and-breakfast is probably more our speed. We had a wonderful dinner at an Italian restaurant in Asheville, and we enjoyed having time alone for just the two of us.

Later in the week, my mom came to visit, and that was nice as well. I think part of what made the week stretch on so long was that we got to spend so much time together as a family, with different parts of my family! One of the coolest (free) things we did was walk across the driveway to the home of the cabin's owner. They have a spectacular west-facing view (almost directly onto Biltmore) and at least a couple nights the girls got to chase fireflies in their backyard. That was probably the highlight of Sophie's experience this past week. Either that or playing with the stuffed killer whale that she found in the cabin!

Elisabeth's highlight was probably going to the Health Adventure Museum at Pack Place. The girls ended up going twice to that--once with Dad and Donna and once with Susan, Mom, and me. It was a lot of fun. The best exhibit (we all agreed) was a "dizzy tunnel" that really did make you lose your balance.

On July 4th, we went over to the owner's deck and watched fireworks from all over the place until we got chased in by the rain. It rained a fair amount on the trip, but eventually, it settled down and was quite cool for the remainder of our stay.

There are probably tons and tons of things that I'm leaving out (and Susan will probably want to add to all that I'm posting), but suffice it to say that we had a terrific time and are all rested and re-charged for our full, "normal" lives. As Susan pointed out, she didn't think of work (much) the whole time, which is a great accomplishment for her and for our vacation together, given the stresses she's been under. I would also like to point out that the Partin family traveling curse was not in effect on this long vacation--nobody got sick (although Elisabeth did throw up at the Health Adventure, from eating the "booger" flavor of "Bertie's Botts" jelly beans (from Jelly Belly). It really is awful, I understand (Susan tasted one). Personally, I thought "dirt" and "sardine" was pretty gross, but I managed to keep them down!

All in all, it was a fun, family vacation. Nothing spectacular, really, but hey--I'll take a boring, un-spectacular family vacation if I can get it after what we've been through!

Thanks for keeping us all in your prayers!

Posted by Randall at 08:46 PM | Permalink | Comments (2)

1:00 PM: I'm heading out to Chicago shortly for a work trip, and I've been running around like a chicken with its head cut off trying to get everything together. I have a moment of calmness now (everything's done!) while I eat the lunch that's been sitting here for two hours. I feel terrible leaving Randall with the girls until Friday night, but I'm comforted that he's such a hands-on parent. I hear stories sometimes of wives who go out of town, and their husbands are completely helpless and clueless about managing the home and the children. That couldn't be further than the truth about Randall. He carries his weight (and more!), and the girls and I are so lucky to have him. I'm getting mushy, aren't I?

The girls are doing well. Elisabeth is doing a "field trip" camp this week. We (well, Randall, mostly) drive her to Fayetteville every morning, and she gets to go to museums and swimming and all kinds of fun things. Unfortunately, they didn't get a lot of people signed up, so there's only one other girl, but Elisabeth loves having a new special friend. Sophie had a mid-month blood test to check her counts on Monday. It turned out fine, but we haven't heard whether they plan to adjust her dosage up a little bit. We hope they don't go all the way up to 100%, because that always seems to result in low counts, infections, and sometimes hospitalizations. Sophie's rash is back, but she's already on two anithistamines and it doesn't bother her, so I guess we'll just live with it. All is well!

Posted by Susan at 01:10 PM | Permalink

8:45 PM There's not been a whole lot to report. Minor updates would include that Sophie's counts were fine (as Susan reported), and that her chemotherapy has been bumped oh-so-slightly from 80% to 85% or so. Instead of taking 4 1/2 tablets of methotrexate on Wednesdays, she's back up to 5 tablets (the full dose). Everything else remains the same, with the other major chemo drug (6MP/mercaptopurine/purinethol) at one tablet five days a week and 1/2 tablet the other two days. I'm exhausted by the changes in all these drugs, or maybe it's fatigue from monitoring these and various other medicines for the past year and a half. I hope that we keep things at this level for the time being. Sophie's been doing great this week--cute as usual and smart as a whip. The other day we were driving somewhere and I asked the girls to keep their giggling and carrying on to a dull roar (this has been a recurring problem in our family, particularly since we have to spend several minutes in the car to go anywhere around here), and Sophie piped up, "Okay, Daddy, we'll put a lid on it!" As Susan pointed out, it's always a little weird to hear your own words echoing from the mouth of your child.

Both girls have behaved very, very well while Susan has been gone. The structure of camp and daycare probably helps a lot. I've also tried to be extra patient with them, although it has worn thin at times. Elisabeth had a blast at her field trip camp, although it pretty much wiped her out. She fell asleep on the way home this evening and it appears as if she dozed off while chewing her snack! Sophie was very quiet while Elisabeth slept, which was very sweet.

Susan returns home tonight. I am really looking forward to having her home. Of course I'll be glad to no longer be a "single parent," but I'll be especially glad to have my best friend home, too! We spend so much time together and share so much in conversation, that it gets quite lonely when she's gone. I'm sure she feels the same way when I'm away.

Posted by Randall at 08:45 PM | Permalink | Comments (1)

9:23 PM A blessed, relatively normal weekend in our family. Saturday was wonderful (Susan's word)--we did nothing in particular. I've tried to be better about preparing for worship ahead of time (sermon, order of worship, etc.) so that I have more time for Susan and the girls on Saturdays, and while I haven't been completely successful (I still prefer to run through the sermon once on Saturday evening), it's been nice to have most, if not all of the day on Saturday for family time.

This morning was a little challenging. Elisabeth has been fighting off some kind of stomach bug all week, and she's still working on that. Sophie woke up a total crab this morning, which is just not like her at all. She also felt a little warm and clammy. Susan quickly diagnosed it as low blood sugar (we had an early dinner on Saturday and Sophie mostly picked at it). We got Sophie some juice and some snacks, and eventually, she came around. Before she came around, she threw up some of what she had already consumed this morning, so that was a little unpleasant. But, she did perk back up. It's been a long time since Sophie's had problems with that, but I'm glad that Susan was quick-thinking enough to realize what the problem was.

After worship, we all went out to lunch, and then it was Elisabeth's turn to get sick. In fact, she's been throwing up a fair amount lately (typically when we're out in public, most often at restaurants). We're not sure what that is about, but we've decided to encourage bland foods for a while and we'll be watching what she eats a little more closely. It may be the stomach bug thing, but other than the occasional upset (and other tell-tale sign of a stomach bug, if you know what I mean), she's been feeling fine.

Tonight, Susan and I were able to go on our date night. In fact, since we had gone grocery shopping together as a family after lunch today, there was nothing to "do" other than spend time together and go out to eat. The girls were excited to have Megan Royal come and sit with them, and Susan and I were happy to be back in our routine of Sunday night dates.

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

9:32 AM Well, for all my talk of "normal" in the last few posts, here's "normal" for you: Sophie started running a fever last night. In fact, she's had minor health issues for a couple of days. She had a touch of whatever stomach bug Elisabeth caught, and on Sunday she had that low blood sugar episode. Her appetite has been pretty weak lately, but none of that was really worth worrying about. Last night after her dressing change, we were watching Alladin together and she seemed especially tired/lethargic. When she crawled in my lap, she definitely felt hot and I immediately went for the thermometer--101.5.

So, instead of going to bed, Sophie went to the ER at UNC-Chapel Hill (Susan drove). The ER was packed, so it took quite a while to get seen, have blood drawn, and start IV antibiotics. Sophie's counts came back strong, so she was not admitted last night, although we are anxious to hear the results of her blood culture. If the blood culture grows something (bacteria), then she'll likely be admitted for treatment. Unfortunately, we are quite familiar with that process.

Needless to say, it was very difficult to go to sleep last night, wondering what was happening and whether or not Sophie and Susan would come home or not. Elisabeth decided that she didn't want to sleep in her own bed, so she slept in Sophie's bed. I guess I could read something into that--wanting to be close to Sophie even if Sophie wasn't here. I tossed and turned and read until Susan called to say that Sophie's counts were good and they were likely to come home, eventually.

For the most part, we go through our lives "as if," not allowing minor issues/problems to upset our normal processes (there really is not an alternative--we're not going to live our lives walking on eggshells or worrying about what might happen even when it isn't happening, especially given the wide range of truly scary things that might happen in our situation). But last night, our lives went from normal to "normal" in the span of about 60 seconds. One minute, we were watching Alladin, the next minute, we were anxiously planning a trip to the hospital, not knowing what the outcome of that trip would be.

Posted by Randall at 09:32 AM | Permalink | Comments (2)

9:05 PM Just a quick update on how things are this evening. Sophie ran another fever this morning, so Susan took her back up to Chapel Hill after lunch. This trip was to the clinic, rather than the ER, and they administered additional antibiotics to Sophie and drew another sample of blood for counts and culture. Sophie's ANC (the indicator of how her immune system is holding up) was even higher today than late last night, which is a good sign: her body is fighting off this infection in its own way. I just wish she felt better. She's been pretty lethargic and sad-looking all day. Of course, a lack of sleep will do that too! Susan slept a good part of the morning (I tended to Sophie, who was pretty sure she did not want to stay in bed all day), and even then I'm sure she didn't get enough sleep. Elisabeth is concerned, of course, and just a little envious of all the attention. Elisabeth was so exhausted from swim camp today that she slept a good portion of the evening--we'll see if she's asleep by 10:00!

Posted by Randall at 09:05 PM | Permalink | Comments (3)

11:00 PM: It's been a good day. Sophie started out having a rough morning (kind of crabby, just not quite herself), but after she took all her medicine and got some orange juice in her system, she said she was feeling a lot better. And for the rest of the day, she was in a great mood. She's feeling very independent, so in addition to taking all her medicine (and she had a lot today), she is very proud that she can take her own temperature with the digital (ear) thermometer. She opens it up, hits the button to turn it on, waits until it says "ready," takes her temperature (shows it to us), and then does the other ear, again waiting until it says "ready." All morning today, she was running a slight temperature, but it never got higher than 100.4 (we are supposed to call if it gets to 100.5). We went out to lunch, and she got pretty heated up when we got back into the hot car on the way home. Her cheeks were really red, and her temperature was 101.6, but she cooled off fairly quickly once we got home. We all took a nap (although I don't think Randall slept very long), and her temperature was pretty high again when she woke up, so I went ahead and called the doctor (it was after 5:00 by then). He said not to worry about her fever as long as she was acting pretty normal. Given that she's had two 24-hour doses of antibiotics and the cultures aren't growing anything, the fact that she is continuing to have fevers probably means it's a virus. Her counts are high, so they're not worried. I think we're going to send her back to day care tomorrow, since she seems to be feeling pretty well.

Elisabeth had a great day at swim camp today. She told us she did a cannonball (while holding her nose). She also cleaned her room last night without any nagging from us--and did a great job. I think she's feeling a little sad and worried about Sophie (and probably also frustrated that she was sick for several days without receiving this much attention). Luckily, she's willing to share her feelings with us, and we're trying to make sure we have plenty of time to spend together as a family, so there are lots of opportunities for good conversation. I think we're headed back to our comfort zone.

Posted by Susan at 10:56 PM | Permalink

8:45 PM: We should have posted an update long before now. I bet folks have been worried that we haven't posted because Sophie took a turn for the worse. I'm happy to say that she continued to do well through the week and is totally back to normal. Sophie is standing next to me as I type and said to tell you all that she's been feeling sad and mad and happy. We've been talking about feelings a lot lately, so that doesn't surprise me.

We had a good weekend, the highlight of which was meeting our friends for a movie and dinner. Everyone had a great time (and the girls thought the Garfield movie was very funny). Last night, Bob and Patti watched the girls while we went to dinner in Fayetteville, so we felt well-rested to start our week.

Elisabeth has had a tough day. She started a new camp this week, and when she got there and saw lots of kids and teachers she didn't know, she got a little scared and started crying. Randall was the one who dropped her off, and he hadn't thought to talk through how she might be feeling on the way there (the way we sometimes do). He hung out with her for a little while, and when she seemed to calm down, he left. She did fine, of course. I picked her up this afternoon, and she told me all about what she learned in cooking camp (the highlight was cooking grilled cheese sandwiches--wrapped in foil--with an iron). We stopped at Starbucks and had a treat and then left to pick up Sophie. Elisabeth complained of an upset stomach, and not long before we got to Sophie's day care, Elisabeth threw up (a lot). Luckily, I had finished my drink and handed her the cup to throw up into, so it wasn't too messy. She had been drinking a steamed milk, and we're starting to wonder if she might be lactose intolerant--we're going to start keeping an eye on how she reacts to different types of dairy products. After we got home, I gave both grls a bath, and Elisabeth was then totally hysterical about wanting to wear pajamas that are three sizes too small (that we put away a long time ago). I eventually calmed her down enough to come up with an alternative, but it took about a half an hour. Whew!

Randall had dinner with friends in Durham tonight and is on his way home. The girls are on their way to bed (but are frequently interrupting me as I write this), and we need to prepare to take Sophie to clinic for treatment tomorrow. It sounds like Randall is going to take her so I can get some work done, but we'll see. She already let me know what foods she expects to eat when she wakes up from sedation: cheese grits, rainbow goldfish, and "banana crackers" (which, it turns out, are stone ground wheat crackers that I don't think taste anything like bananas).

Here's a sweet story about Elisabeth from this morning. She was watching a TV show about making wishes, so Randall asked her if she had three wishes what she would wish for. Without hesitating, she said she would wish for (1) Sophie not to be sick, (2) me not to be stressed out about work and be happy, and (3) Nannie to feel better. I think it's pretty amazing that her wishes were all for other people. When I asked her about it this afternoon and told her how interesting it was that she hadn't wished for something for herself, she said she had an idea for a fourth wish. I thought now I would find out what she wished for herself, but this one was that T'yanna would never have gotten sick and hadn't died. She doesn't talk much about T'yanna's death (we've tried), but it comes out at times like that.

Posted by Susan at 08:41 PM | Permalink | Comments (1)

2:45 PM: I just wanted to post a quick update to let you all know that we'll all be out of town for at least a few days. Elisabeth heads up to Randall's mom's house in Tennessee tonight. She'll fly by herself (on a direct flight) and Karin will meet her at the airport. Randall, Sophie, and I will stay in a hotel near the airport tonight, and Randall will leave very early tomorrow morning for South Africa. He arrives at noon on Saturday (6 hour time difference). He comes back home on 8/11.

Sophie and I will head up to my mom's house from the hotel, so we can spend a little time with Mom and Nannie. It's been a while since we visited. I haven't decided yet how long we'll stay--possibly just through Sunday or maybe a few more days. Elisabeth flies back home on 8/5, and I plan to drive both girls back up to mom's from the airport that day. I'm doing my best to take some time off from work while Randall is gone to give myself a break and spend quality time with my family.

We're all packed up and ready to go. Randall went to pick up Sophie and then he'll swing by and grab me so we can go to Fayetteville and get Elisabeth. Then we head up to the airport. It's been a little stressful getting everything and everyone ready for traveling, but it's also exciting! While I'm at mom's I'll try to post updates, but with dial-up access, I won't be getting on the computer that often.

Posted by Susan at 02:44 PM | Permalink

10:44 PM Ugh. Well, we're in the midst of our traveling/sending off process and it has already been an ordeal. Coordinating getting Elisabeth from Fayetteville (day camp--cooking camp, that is), picking up Sophie at Countryside, visiting our cat, Achilles, who was unexpectedly hospitalized yesterday with "boy trouble," taking care of last minute packing, preparations, and (of course) last minute purchases, we're exhausted.

In spite of all of that, things were going pretty smoothly (more or less) until we got underway to the airport. Everything was packed, prepared, ready to go, and both girls were excited in the back seat of the Honda. We drove through a driving, unbelievable thunderstorm, but we would not be deterred.

We had planned on a quick side trip to REI for some last minute purchases for me (a flannel sleeping bag liner), and got a little lost. Not too bad, but enough in rush hour during a rain storm to add significantly to the stress. We "detoured" and had dinner at Boston Market, with plenty of time. We eventually found our way to the airport only to hear that Elisabeth's flight was delayed by at least two hours.

No worries, we called my mom and let her know that she needn't rush to the airport, and took that time to get the rest of us checked in to the hotel and find our way to REI for that all-important shopping. We got back to the hotel, arranged a shuttle back to the airport and got on our way. We arrived at the airport to find out that Elisabeth's flight (originally scheduled for 7:45 but allegedly delayed until 9:45 took off at 8:02pm--Elisabeth missed her flight! What a disaster! After a fair amount of wailing and gnashing of teeth (on all our parts), we got Elisabeth rescheduled for tomorrow morning and found our way back to the hotel. It's been a long day.

I leave early, early in the morning, and I think Susan and Sophie are going to leave after they see Elisabeth off. It's been a stressful adventure, but I hope that things go more smoothly tomorrow. Pray for us all.

Posted by Susan at 10:44 PM | Permalink

8:45 PM: Despite all of yesterday's frustrations, everyone in our family is now exactly where they're supposed to be. Randall left the hotel at 4:00 AM this morning. His flight to DC was delayed, but he had a very long layover before the whole group left from DC. I talked to him a few times before his second flight left, and I was pretty sad when we spoke for the last time. It's an 18 hour flight, and he should be arriving in Johannesburg around 6:00 AM our time on Saturday morning (it will be noon in South Africa).

The girls and I had breakfast, checked out of the hotel, and headed over to the airport. Unfortunately, I hadn't really planned enough time, so I was pretty stressed when I saw how long the line at the ticket counter was. But while we were waiting, I saw that the departure time changed to 50 minutes later, which gave us more than enough time to get settled. I told Elisabeth I had never been so happy to have a flight delayed. The waiting area was really crowded and overwhelming, but we did okay. Not long before they started boarding though, Elisabeth got pretty upset and started crying. She said she was going to miss me and wanted to go home. I talked to her and said soothing things, but she was still pretty sad. Then another family in the pre-board area noticed and started talking to Elisabeth. Their daughter is the same age as Elisabeth (and was wearing a very cute outfit), and Elisabeth was distracted by answering questions and getting to know them. They offered to have Elisabeth sit with them, and that made her feel a lot better. It was nice having a family adopt her that way. Karin called around noon to say that Elisabeth had arrived. Elisabeth chatted with me on the phone and sounded great.

Sophie and I headed up to Virginia from the airport at around 11:00 AM. We stopped for lunch, and Sophie slept for the last hour. Nannie and Grammy were happy to see us (and we were happy to see them). Grammy and I took a nap, so I'm feeling pretty well-rested. It's nice to be here. Really nice!

Posted by Susan at 08:44 PM | Permalink

8:45 PM: Sophie and I are still visiting with my mom and Nannie. Nannie sleeps a lot and is easily worn out, but she watches Sophie like a hawk and smiles a lot. That's nice to see. I talked to Randall a couple of times yesterday, and he was pretty tired but happy to be there. I also talked to Elisabeth last night, and she had a fun day with Oma. Sophie and I went to church today. She helped pass the plates for the offering and felt very grown-up. She and Grammy went out to lunch together today while I took care of Nannie. Sophie has been in a great mood this week. I guess the steroids have hardly affected her this month. Sophie is standing next to me and says she would like to type something:

cxzfewsafdghbvnmjhhhgftrewquijk;pos
sophie xxxxxxzaaaaaaaaaaaasdfdfdrfgvddqa
4 (how old she is)

Good night!

Posted by Susan at 08:42 PM | Permalink

8:45 PM: Another good day here at my mom's. Sophie is having a fantastic time, and everyone who visits thinks she's very cute. Sophie and my mom and I went out to lunch together today while an aide stayed with Nannie. Mom gave Sophie $5 to spend at the dollar store, and she had such a great time picking out 5 toys for herself (and playing with them the rest of the day). Sophie had a dressing change tonight, and she did great. She wasn't the tiniest bit upset. There were several people here at the time, so she had an audience. I think she's kind of proud of some of the things we do. She also likes to show people how she can swallow pills.

Randall called close to noon today. He's had a very full couple of days and isn't sleeping well, so he sounded very tired. It's challenging to talk so infrequently and have to wait for him to call me. I'm always worried that I'm going to miss my one opportunity to talk to him (and we normally talk a LOT). I'm just glad he's getting to take this trip. He's experiencing some amazing and overwhelming things. I'm sure he'll talk about some of them here when he gets back.

I also heard from Elisabeth today. She told me she was so tired today she took a 3 hour nap (and it was her idea). It's very hot there, so she hasn't been able to spend as much time playing outside as she wants to. There's plenty of indoor activity to keep her busy and happy though. She sounded great, and it was incredibly sweet to hear Elisabeth and Sophie talking to each other. When Sophie got on the phone with Elisabeth, she said, "So, how are you doing?" Very grown up for a four-year old to say, I think!

Posted by Susan at 08:48 PM | Permalink | Comments (1)