Sophie's World

5:00 PM: Just a quick update to let you know that we're doing great! We're in Glorieta, New Mexico at a really beautiful retreat center. We spent Tuesday night in Albuquerque with our friends Barbara and Jeremy (and their kids Jacquelyn and Jacob, who are the same ages as our girls). We bid them a tearful farewell (Elisabeth was sobbing) on Wednesday morning and headed up here. We have a little apartment, so the girls have their own bedroom (which means Randall and I don't have to go to bed when they do). We drove back down to Albuquerque this morning to pick up Randall's mom. We're all enjoying ourselves, and Sophie appears quite healthy (she had a slight fever yesterday, but nothing to call the doctor about). Tonight we'll have dinner with our friends Lonna and Robert (and their three kids), and tomorrow is the commissioning ceremony for Randall.

Posted by Susan at 04:56 PM | Permalink | Comments (1)

10:30 PM: We're home! We had a great trip, and as you can see, it's been a while since we have had internet access. I hope no one was too worried about us. Sophie's feeling just fine, just a few low-grade fevers. Unfortunately, Randall has been feeling horrible for days now. As Randall says, the Partin family traveling curse struck him instead of Sophie (I have to say I'm relieved about that, as much as I don't want him to suffer). He has had fevers and aches ever since last Friday morning (and had a pretty bad migraine on Thursday), and only has occasional moments of feeling okay. I hope now that we're home and not dealing with the effect of high altitude, he'll start to recover.

Two cute Sophie stories: (1) Friday afternoon, after the Commissiong ceremony (which was very nice), Barbara and Jeremy brought Randall's mom and the girls to their home in Albuquerque so Randall and I could have some time together. They had dinner together, and just before bedtime, Barbara served dessert. Sophie said (matter-of-factly), "I can't eat anything after 7:00, but I can have gum" so she happily chewed gum while everyone else enjoyed dessert. (2) The girls and I went to an outdoor concert Saturday night (Randall stayed home and rested). During one of the slower songs, Sophie was sitting in my lap, and we were rocking and snuggling. She gave me a big hug and said in my ear, "I'll always be with you, Mama." It brought tears to me eyes--I so much want her to always be with me, and I worry about the possibility that she won't. It would have been sweet coming from any child, but it was especially significant coming from her.

I had to call the doctor this morning when I realized that we forgot to give Sophie her 6MP (Mercaptopurine) last night. We had a late dinner, so we were going to wake her up to give it to her and forgot. That's the first time we've ever forgotten to give her chemo. I felt terrible! I called the doctor to find out whether I should give it to her that morning or just skip it until tonight's dose. He said to skip it, and the fact that she's only on a half-dose anyhow means she's not missing much. Still, being out of our routine was not totally a good thing.

We had such a good time seeing our friends in New Mexico and are very much looking forward to the day when we live there again instead of just visiting. It was good for Randall to connect with other pastors in the conference; everyone made us feel very missed and wanted. It's clear that there will be a place for him when we're in a position to go back, and we're thankful that they (and the conference in North Carolina) are willing to let us stay here another year while Sophie finishes treatment.

I have meetings at work for the next two days and may actually spend the night in Durham Tuesday night (haven't decided yet), so Randall will be a single dad for a couple of days. Luckily, Elisabeth is still in school through Thursday, and Sophie goes back to day care, so he will have some time to himself during the day.

Posted by Susan at 10:33 PM | Permalink | Comments (1)

8:37 PM I think I have nearly recovered from whatever virus had me down the last few days. Today has been a mostly productive day, and I haven't had any "episodes" of tiredness, fever, or whatever. Good thing, too, since I was more or less a single parent (Susan had a two-day meeting up in the Triangle, so she spent the night up there last night). The major events in our lives the past couple of days (other than getting back home and settling in) have been that Sophie had a bad tumble last night about 7:30pm. Suffice to say she was doing something that both parents have discouraged her from doing because it is not safe, and, as we have tried to warn her, she fell. When she fell, she hit the back of her head on the coffee table and caught her upper lip on a toy stroller. The back of her head wasn't nearly as bad as her lip, which split neatly right under the nose--about 1/4 of an inch across. There was lots of blood (of course) and at least as many tears. Mostly, she was very, very scared, but the blood and the pain didn't help her feel less scared. Sophie remained out of sorts for the rest of the night. Taking her nightly medicine was a task--she didn't want anything going near her mouth, but we managed to get four pills and some liquid medicines in. Brushing her teeth was out of the question. The biggest problem was going to sleep. She could not suck her thumb. After crying for a while about not being able to suck her thumb (her substitute soothing behavior was holding a folded paper towel to her lip), Sophie said softly, "I wish this hadn't happened." I told her that I wished the same thing, but that she would feel better soon.

About 6:00am this morning, before I woke up, I heard this cheery voice from right beside the bed, "Hey, my lip does feel better already!" I'm so glad I was right!

I got Elisabeth off to school (tomorrow is her last day--pray for us!), and then Sophie and I headed off to the clinic. I was eager to have someone look at Sophie's lip (although it was already looking much better). It was a very, very quick visit today as there was no sedation or spinal tap. Sophie must have thought there was, because she barely ate anything (I thought it was because of her lip hurting). When we got to the clinic, she said, "And I can eat whatever I want when I wake up." When I told her that she could eat whatever she wanted now, she seemed confused. I told her there would be no sedation and no spinal tap, so if she was hungry, we could get her something to eat. She asked for Cheetos (suprise!). We were seen by the nurse practitioner, got a blood draw, a quick shot of vincristine in her line and we were off. Sophie's counts came back later today and they were great. Her ANC (again, a measure of her immune system) had bounced up to over 2.0, which is great. They upped her chemo drugs to 3/4 dosage from 1/2.

A cute Sophie (and Elisabeth) story from the dinner table tonight. Sophie has taken to telling long, rambling stories that really don't have much of a plot and seem to have no particular ending, other than "The End," which she tacks on about 18 minutes after she started. Tonight, she launched into another story:

"Once upon a time, there was a girl, and she had to get up very, very early to go to school, and do you know what time she got up to go to school? Forty-eight pounds!"

Elisabeth, listening intently, nearly spit out her drink and said, "Sophie, that is not a time! That's 'libs'!"

[as in "lbs."]

Now it was my turn to spit out my drink. Where would we be without big sisters to straighten us out? (hi, Sabine!)

Posted by Randall at 08:37 PM | Permalink | Comments (2)

10:15 PM: Wondering where we've been? Everything's fine--just busy and not that much to report. We've spent a lot of time catching up from being away for a week. Our weekend was filled with birthday parties (and it was my mom's birthday too!). We finally got to have our regular "date night" Sunday night, and the girls stayed with Sylvia and James from church (they're regular readers, so I have to say hi and thanks to them!). The girls loved being at their house and playing with their grandson's toys. I'm not sure the girls were all that happy to see us when we picked them up.

The girls are having a great week. We signed them up for a summer camp together--"Down on the Farm." Each morning we drop them off in Fayetteville, and they take a bus to a farm, where they play with and take of animals, go swimming (Sophie wades and tries to keep her chest dressing dry), and just generally have fun. Elisabeth found a friend who is her age, and Sophie tends to hang out with the "teachers." On the first day, Elisabeth was a little bit nervous about how things would be (and did a great job of expressing her concerns). Sophie marched right up to anyone who would listen and bagen with her usual, "My name is Sophie. I'm 4 and my sister is 7" speech. I think the only thing that intimidates her at the moment is escalators (which made our trips to the airport a little challenging!).

I've had to go in every day this week, so Randall has been dropping them off and picking them up and has had some great conversations with them. Yesterday, they were listening to the radio, and the song "I Want to be Sedated" by the Ramones came on. It's pretty catchy (and repetitive), so the girls were singing along, when Sophie asked "what does 'sedated' mean?" Randall explained it to her and then talked about how she gets sedated for her spinal taps and told her that one time, a teenage girl at the clinic was singing that after she woke up. I wonder if she remembers it. It's amazing to us the things we talk about with her and how grown-up she has had to be about some things. How many four-year-olds know about sedation?

Randall will go to the North Carolina United Methodist annual conference down in Greenville tomorrow morning through Saturday. I have to attend a training at work Thursday and Friday, so we arranged for the girls to stay with Bob and Patti Wednesday night through Saturday morning. It sounds like the girls would like to finish going to camp, so I think Bob and Patti will take them to Fayetteville for us. What good friends we have!

Posted by Susan at 10:12 PM | Permalink | Comments (1)

9:00 PM: What a horrible day this has been (Sophie's just fine--don't panic!). It felt like everything that could go wrong did. Randall left early this morning for the conference (he got there fine and is doing well), and the girls and I pulled out not long after (before 8:00). I got them dropped off in Fayetteville as planned, but I hit a fair amount of traffic on my way in to work (the rain from Alberto was intense, and there were times I was hydroplaning, so that was stressful), and it was well after 10:00 by the time I got there. I had meetings all day long, so I don't feel like I accomplished much, and things are very stressful for me at work right now (probably a combination of what I'm working on, plus feeling the effects of being out for vacation and Sophie's time in the hospital). Anyhow, I knew I needed to leave by 2:30 to pick up the girls by 4:00 (It takes about an hour and 20 minutes, but I wanted to allow for traffic). I left at about 2:20 but at some point, I hit traffic that wasn't moving. When it took me more than a half hour to go one mile, I realized I wasn't going to make it, so I called the camp teacher (I had gotten her cell phone number), and she couldn't stay late. At this point, it was almost 3:30, and I called Sylvia, who lives a little closer to Fayetteville than most other folks in the church, and I suspected she would be home. Without hesitation, she got the directions and took off. She picked the girls up not long after 4:00 (which was fine). Meanwhile, I was only inching along, and I finally saw that they had closed I-40 eastbound and were diverting everyone to I-440 (which loops around Raleigh). What was really slowing things down is that many cars were stopping to talk to a man standing on the side of the road telling people how to detour. I went around that long line and called my friend Jamey from church, who put me in touch with someone she works with who knows his way around. He told me they had closed I-40 because of flooding and gave me great directions for how to get around it, but the first way he told me go was closed too. Then I called him back and told me another way to go, which worked. I pulled into Sylvia's at 4:45. My normal commute is 1 hour, and it's never taken my longer than an hour and 45 minutes (until now).

Then, to add insult to injury (although as it turns out, maybe I added injury to insult), when I got home, I discovered that someone had hit our mailbox, and it was hanging upside down by one screw. As I tried to figure out if I could get it screwed back (I couldn't--too much danage), I realized (far too late) that I was standing in a fire ant mound. So I'm hopping around (inches from a highway where semis travel way over the 55MPH speed limit), trying to get my flip-flop off and brush the ants off. One of the church trustees came and fixed it temporarily (thanks Russell!), but it was pretty damaged, so he'll install a new one. Benadryl is helping with the bites I got.

I got the girls packed up, fed, and bathed, and I took them over to Bob and Patti's where they will stay until Saturday morning so I can attend my training for the next two days and not have to drive back and forth. I had a nice visit with Patti, and the girls were happy to be there. Sophie was quite upset about not being able to eat after 7:00 and really pitched a fit (she usually doesn't seem to care). We finally distracted her with a ride on her tricycle.

So, I'm emotionally and physically tired, but I must say that I am amazed and thankful that I had such support today--Sylvia picking up the girls, Jamey's friend Phillip talking me through back roads, Russell taking care of the mailbox, and Patti listening to me complain about all of it and feeding me mashed potatoes--my favorite comfort food (not to mention watching to girls for a long block of time!). As soon as I get packed, I'm going to bed.

Posted by Susan at 08:59 PM | Permalink | Comments (2)

8:15 PM: What a difference a day makes! I am in such a better state of mind tonight than I was 24 hours ago. I took two benadryl last night (and slept really well), and I've had no more itching even though I haven't taken any benadryl today. I suppose I really got what I deserved last night, because I'm constantly stirring up the fire ants just to watch how quickly they scurry. Anyhow, I drove in this morning (with a fair amount of traffic, but I left early, so I wasn't late), and this seminar did a great job of distracting me from my work stresses and may even be giving me some really practical ideas for working on them. The training is being held off-site in a really nice training center with lots of amenities, and I really like the other people attending the session.

Tonight, I attended a social gathering at work (a picnic) and enjoyed hanging out with friends. Most folks were also going to go to a baseball game (Durham Bulls) but I decided to head back to the hotel (where I have a very nice room), do a bit of work, and relax. I took a shower, got on the computer, and found out that I got a reprieve on what I had to do, so I don't have to do any work tonight (granted, I could do work, but I think pampering myself is a higher priority).

I checked in with Bob and Patti, and the girls had a great day and were outside riding their bicycle and tricycle. Taking a break from parenting feels like a real luxury, and I know the girls are in great hands. I have also talked with Randall a few times, and it sounds like he's enjoying himself, making good connections, and hearing about interesting issues.

Posted by Susan at 08:14 PM | Permalink | Comments (4)

10:55 PM Well, it's certainly good to be back. Sophie and Elisabeth both gave me very welcoming hugs when we saw each other today. I actually left the North Carolina Annual Conference a little early to get home earlier. Susan and the girls were still at Bob and Patti's when I got home--sounds like Sophie and Elisabeth had a terrific time with Bob and Patti, although I think the girls wore them out. We're so used to the day-to-day challenges and stresses of getting the girls going, tending to them, and the like that we forget sometimes how demanding it can be! I hope that the girls haven't worn out their welcome!

I know that I was only gone for a couple of days, but both girls seemed so grown up. Both had a little bit of sun from the Down on the Farm camp (Elisabeth more than Sophie), and I think Sophie's hair is even longer than I remember it. After we got Sophie down for a short nap, we went up the road to Spivey's Corner for the National Hollering Contest. Our church was selling hamburgers and hotdogs for a fundraiser. I think both girls had a good time--Elisabeth even saw a good friend from school. Sophie got pretty cranky, though, so we left shortly after the winner was announced. The general grumpiness continued through bathtime, but both girls went to bed pretty easily, so I suspect they were just tired.

Posted by Randall at 10:55 PM | Permalink

8:48 PM Another busy day here in Sophie's world. Sophie was pretty reluctant to return to Countryside today, after being at camp with Elisabeth all week last week. But, when I reminded her of all the things she can share with her teachers and friends, she eventually decided to go. Boy was I glad to see Mikayla Peterson and Sophie's new friend Tamara in the classroom when we got there! Sophie cheered right up at the sight of them and walked right into the classroom. Sounds like she and Tamara had a very busy day playing together today. Sophie got so dusty and dirty today at school, there was no question about a bath tonight. For a change, I got to do the dressing change, and that went reasonably well. We also had a CBC done today, and Sophie's counts are holding steady--not great, but strong enough to stay the course. We're going to keep her at 75% of the chemotherapy dose for a while, and we'll check again next week when we go to the clinic.

Elisabeth stayed home with me today. Actually, we had secret plans to run away to the beach, but since Mondays are typically my errand days (and there were plenty of errands to take care of), we quickly lost the chance to go to the beach. We consoled ourselves by spending a couple hours at a friend's swimming pool this afternoon, once all our errands were taken care of.

Susan went in to work today. I'm thankful for her sake and for ours that she is not going in all five days this week! It sounds as if things are slowly starting to break free as far as the stresses of her job right now, so hopefully the pressure that she has been under for quite some time will begin to ease up.

While I was at Annual Conference last week, I got to visit briefly with Cookie Santiago, who is the conference director for Hispanic/Latino ministries. Cookie's son, Diego, was diagnosed with cancer last year and has really had a tough time. We talked only a short amount of time, but it was clear that we shared the same feelings of empathy for any family and any child going through the ordeal of cancer and chemotherapy. In fact, Diego made a brief appearance at Annual Conference and it was quite touching to see him. We are so thankful for the great prognosis we have with Sophie's leukemia, but at the same time we are simply heartbroken by the countless stories of other children who have a much, much tougher time. We keep so many families and so many children in our thoughts and prayers, it is almost overwhelming to think about at times.

Posted by Randall at 08:47 PM | Permalink | Comments (1)

9:45 PM: It's been a while since we have posted an update, I see. There's not that much news to report, I guess. Elisabeth was home all week, and that worked out just fine. Randall and Elisabeth finally got to go to the beach on Wednesday (I worked at home and Sophie went to Countryside). The biggest excitement that day was that we had a huge thunderstorm, and the lightning knocked out the electricity to the house in the afternoon. Although my laptop runs on a battery, the wireless router runs on electricity, so I couldn't do much for the rest of the day. I read for a while, and then when the power finally came back on, I made lasagne for dinner (the kids both loved it!).

This afternoon we went to Fayetteville to do some shopping. We decided to get some little clips for the sides of Sophie's hair. It's so curly (and getting longer) that it sticks out on the sides. She was excited about picking those out. The kids were kind of driving us crazy today, but they seemed to enjoy the outing. What we've really been looking forward to is that Sophie's friend from Countryside, Tamar, and her family came to visit us tonight for dinner. Tamar turned 4 at the beginning of June, so they're very close in age, and they are best buddies at school. Sometimes they cry when they have to leave each other. She has a 15-month old little brother, and her parents are very nice, and they live just up the road from us. I suspect we'll be getting together with them again. Tamar's mom grew up around here, so she knew the history of some of the houses and families we've been curious about.

We've got a busy week coming up. We have Vacation Bible School at church every night Sunday-Wednesday night. Sophie goes to the clinic for treatment (chemo through a spinal tap, plus an injection in her catheter). I'll be busy at work trying to wrap things up before we go on vacation the following week to celebrate our 10-year anniversary.

Posted by Susan at 09:45 PM | Permalink

3:00 PM: We just got a phone call from T'yanna Cole's grandmother letting us know that on Saturday night T'yanna lost her battle with cancer. See the entry from late March to read about when we first heard about her relapse. I don't know the details of these recent weeks, but I know her family must be dealing with a whirlwind of emotions ranging from relief that she's no longer suffering to profound sadness that I can't even comprehend. Please continue to keep the Cole family in your thoughts and prayers, especially T'yanna's little sister Maddie, who's only three, and for the little baby boy Melissa is carrying who will never know his oldest sister.

Posted by Susan at 03:05 PM | Permalink

9:33 PM The girls are still up, although I think they are going to sleep soon (fingers crossed). We had another fun night at Vacation Bible School tonight. There were a couple fewer kids than last night, but it still was quite a crowd. Tomorrow is our final night and I'm sure all the adults will be exhausted before all is said and done. I'm thankful that our VBS is turning out to be so successful this year.

Of course, I just realized that perhaps one reason why I'm so tired is that I got up at 4:45 this morning to get ready to take Sophie to the clinic. All four of us went today, which is the first time in a long time that we've done that. Fortunately the clinic was not too busy this morning, so there was room for all of us. We were #3 in line for sedation, but got bumped up to #2 because the young boy who was ahead of us needed some meds prior to his sedation. We've seen him before in the clinic and he really looked unhappy today. I felt pretty bad for him.

Sophie was very brave about the sedation this time. Although she claimed (loudly) that she would walk right into the treatment room without her blankie or anything, when it came time to go, the blankie went over her head and Susan had to carry her in. She wasn't all that thrilled, but it went better than it has gone in the past. Unfortunately, we had to wait a long, long time to get Sophie's blood chemistries back before she could receive the second drug (in her IV. The first drug was through a spinal tap). Not long after Sophie got up (and helped herself to cheese grits), she asked about her band-aid and said that we could take it off. That has never happened before. Usually, we have to leave the band-aid on for days and days and weeks and weeks until it is barely hanging on by a thread and even then she pitches a fit when it comes off. Maybe she's more mature. Who knows?

The good news is that Sophie's counts are great. We're bumping up her meds to 80%, hoping that the increased dosage will not tax her immune system too much. It certainly seems as if she cannot quite handle 100%. Then again, it seemed that whenever she got to 100% she also had some virus or bacterial infection that would have dropped her counts as well, so let's pray that she stays healthy!

We got home shortly after lunch (stopping on the way home to eat) and since both girls napped in the car, neither one was into napping this afternoon. Susan let me doze briefly while she worked and afterwards, she left to visit T'yanna's family. It was good for her to see them, I'm sure. We have so many questions and wish to say so many things to them, I know that Susan was thankful to see them face-to-face. T'yanna's mom, who must be going through so much right now, kept insisting that we talk to Sophie and ensure Sophie that she not worry about this happening to her. It was quite touching that she is so concerned about us and our family right now, considering the devastating loss that she has had.

There is clearly a bond between families who experience childhood cancer. I think it's like sharing a deep wound with someone else--when you see someone get wounded in much the same way as you have been wounded, you ache and feel the pain and sorrow as if it were your own. You cannot hide from the powerful sense of empathy. Even when you know that circumstances are different and all cancers are not alike, there is so much that is shared.

T'yanna's service will be tomorrow. I'm not sure if we'll all be able to go, but I know that Susan will want to be there. We're not really sure whether Elisabeth will understand or be able to handle the funeral. Her genuine, initial reaction to hearing about T'yanna was a simple, "Oh, man!" Of course, I think that said an awful lot, but I also think that Elisabeth oftentimes thinks more than she speaks, and eventually, more will come out. We'll see.

Posted by Randall at 09:32 PM | Permalink