Sophie's World

1:23 PM It certainly has been a long time since our last post. As many of you have assumed, it's because our lives are going along pretty smoothly. Sophie is doing very well. She's down to only one Band-Aid now. The one on her arm where her PICC line was fell off at school the other day and she hasn't asked to replace it. Hopefully, the same will happen with the Band-Aid on her chest (where her central line was). I have decided not to make a big deal out of it, because when I do, she just manages to dig her heels in even further. I figure she'll find a way to be okay with it on her own terms and in her own time. Right now Sophie's got a nasty cough, but she is trucking along just fine.

Halloween was fun for both girls. We had a very successful Trunk-or-Treat at the church on Sunday (Sophie went as Clifford while Elisabeth went as Scooby-Doo). Then, on Halloween, we visited a handful of neighbors and church members who live close by (Elisabeth wore a ballerina-type outfit from her last recital and Sophie wore her Care Bear outfit from last year--it still fit!).

We are all very much looking forward to the Make-A-Wish trip. We haven't planned much (yet), but I imagine we will start doing so soon. It's nice that so many details are pre-arranged. On Saturday, November 11th, there will be a small-ish party for Sophie at church sponsored by the Make-A-Wish folks. That's when we'll get our packet of passes and information and some additional "surprises" as they call them.

Susan is in Los Angeles at the American Society of Criminology meetings until Saturday. So far, the girls and I have survived our time alone together. Elisabeth got her report card back yesterday and she has made Principal's List (all A's) once again. She's a smart cookie. Honestly, I'm beginning to wonder if she's not too bored in school!

Thanks for checking in, and thanks for keeping up with us!

Posted by Randall at 01:23 PM | Permalink | Comments (1)

8:30 PM: It's been a long and exhausting day. Sophie went to treatment a week early today (we'll be in Disney World next week), and she wasn't due for a spinal tap, so we got to go a little later than normal. We got checked in, and I had a fairly long list of questions to review with the nurse pracitioner during her exam. Top of the list were to discuss the cough she's had for the last 3 or 4 weeks (has gotten worse lately), and she's been complaining of headaches and tummy aches fairly frequently (even before the cold started). When the nurse practitioner listened to her chest, she heard "crackling" sounds in her lungs, so she decided to do a chest x-ray. When she checked Sophie's ears, she found an ear infection, and she suspected that the head pain might be due to a sinus infection. They also did an abdominal x-ray to check for a possible bowel obstruction.

However, because the headaches started before the cold, they defnitely wanted to do a CT scan and want to check her spinal fluid, because that's one possible sign of relapse (needless to say, that's a scary prospect). Because Sophie had breakfast before we left, they couldn't do sedation for the spinal tap, so she has been scheduled to take care of that under sedation on Friday morning. The doctor says he's checking so quickly because he wants to rule out the possibility of relapse so we won't be worried during our trip, but of course the urgency of this feels scary to us. She was able to get all her scans and x-rays today though. Sophie was pretty scared about getting the IV in her hand (two attempts this time), and was really frightened about the CT scan, but ultimately, she held very still and handled everything really well. She cried and shook and sweated, but she's an amazingly brave girl. We always tell her it's okay to be scared, and to cry, and to make any noises or have any feeling she wants, but she just has to be still (which she does).

The chest x-ray showed that she has pneumonia, and the abdominal x-ray shows a fair amount of constipation (although she had some "movement" last night, if you know what I mean!). The results of the CT scan weren't in before we left, but they decided it would be safest to assume she has a sinus infection.

So, in addition to getting chemo (vincristine) today, she got a dose of IV antibiotics (ceftriaxone), and we came home with a fistful of prescriptions. She'll be on zithromax for the infections; she'll take nexium for stomach pain and has a new prescription for zofran if she's nauseated; plus we got refills on a few other things.

I don't think we'll know anything new until we hear the results of the procedure on Friday. If the spinal fluid looks clearm, that will be a big relief. Until then, we just have to wait and try not to worry.

Posted by Susan at 08:29 PM | Permalink | Comments (4)

9:31 am Just got off the phone with Susan. They are on their way home from UNC. Sophie's spinal tap went well, and her spinal fluid looks "clear," meaning she has not had a relapse. We are all very, very relieved, although still quite uneasy and shaken from the possibility of a relapse. Sophie has been doing so well that we haven't considered that possibility much of a possibility. The fact of the matter is that we simply cannot live in fear and dread of a relapse--after all, we know exactly what treatment is like, and a relapse simply would mean a repeat of the protocol (more or less) with an only slightly lower prognosis. But, the fact of the matter is that you can say that until the cows come home, but do you feel it? Do you live it?

God seems to have an ironic sense of timing, too. All week long, with the uncertainty about Sophie's health, I have been struggling to make other aspects of my life certain (mundane things, like laundry), and finding that unsatisfying. I'm in a covenant group with other new pastors in the North Carolina Conference (a Residency in Ordained Ministry group for those of you who know the lingo), and today is a day that our group has scheduled a fast. Part of the discipline of fasting is to remember how dependent we are on God, who gives us our daily bread, who provides for our every need. This morning, as Sophie and Susan left long before sunrise, I (reluctantly) acknkowledged that I do not have control over this situation. Nothing I can do will give me control over this situation. And I finally came around to remembering what I've learned through all of Sophie's treatment, that no matter what, no matter how difficult, how hopeless, how heartbreaking things may be, we are being carried by God's hands. As I continue my fast today, this will be my focus, my prayer, that God will help me see, help me feel, help me live in God's hands.

Everything went very well at the hospital. Sophie went in with just nitrous oxide, so she didn't need an IV after all. They were worried about her lungs (with the pneumonia), so a breathing tube was a possibility but didn't happen. Dr. Gold recommended that we run the zithromax for a full ten days instead of five on, five off, five on, since Sophie seems to feel pretty crummy still. She has practically no appetite, which is worrisome, especially since she's on steroids--usually she eats us out of house and home.

All in all, good news, but we are still on edge a bit. We're looking forward to tomorrow's pizza party with Make-a-Wish and our trip on Monday. Thanks to everyone for checking in this week and keeping us in your thoughts and prayers. We have certainly needed them and relied on them, and we will continue to need them and rely on them. Thanks again!

Posted by Randall at 09:31 AM | Permalink | Comments (2)

9:41 AM Maybe the third time is the charm--this is my third attempt at posting an update, the previous two were lost when my browser crashed. Of course, there was lots and lots of interesting things that are now gone forever, but I will try to hit the highlights.

We're back, and we're all healthy, for the most part. Elisabeth still has a nasty cough, Susan coughs every now and then, and Sophie seems much, much better. We only had one "scare" with Sophie when she started vomiting one night before bedtime. Pretty much everything since lunch came back up. She was better in the morning, however, so we kept on going!

Our friends, Howard and Allison Smith were in Orlando, too (their daughter, Madison, is a leukemia survivor and went on her Wish trip to Disney in 2004). It was great having another family to pal around with, and Elisabeth and Madi are turning into pretty good friends (although we think it makes Sophie a little jealous). Having another pair of adults made it easier to trade off riding rides with Elisabeth (since Sophie was not tall enough or not brave enough to ride everything).

We stayed at Give Kids the World, which is a 70-acre, theme-park styled village of about 300 units especially for families with children on a wish trip. Give Kids the World (GKTW) was an amazing place to stay at, particularly for the girls, because of all the special things they had going on. GKTW has its own carousel, theatre, arcade, miniature golf, ice cream parlor, and gingerbread house cafeteria. The girls also got to go on a carriage ride, ride horses and ponies, and go for a swim--Sophie got to swim for the first time since she was diagnosed nearly two years ago. That was probably the most magical thing that happened the whole week. She loved it. I wish I had a video of how happy she was in the pool!

We spent three days at Walt Disney World, two at Magic Kingdom and one at Disney/MGM studios. I was a little concerned at first that Sophie was not going to enjoy the experience when she refused to enter the turnstile on the first day--she was too scared. She eventually went intside the park, but refused to ride the rides (too scary). The Mad Tea Party (the teacup ride) broke the ice, although we were not allowed to spin the teacup. From then on, nearly any ride that did not leave the ground was acceptable, although she eventually got over that phobia. By the end of the week, she rode on the Thunder Mountain Railroad roller coaster, but that was a bit much for her. I think Sophie's favorite ride was probably the Haunted Mansion (!), but maybe the Winnie-the-Pooh ride is a close second. Elisabeth's favorite (and mine) was Space Mountain.

Because we were on a wish trip, Sophie wore a GKTW button, which meant we got preferential treatment on the rides (Fast Pass access, for those in the know), but we also got special treatment when it came to meeting the characters and getting their autographs. Sophie and Elisabeth got to personally greet tons of characters, and got something like 35 autographs from characters like Peter Pan and Wendy, all of the Princesses, Mickey, Minnie, Donald, Goofy, Stitch, Tigger, Pooh, and so forth. You can also check out some of the photographs from Disney's photographers at the following URL:

http://disneyphotopass.go.com/DPI/r.d?i=812857193

These pictures are only available for the next 30 days, after which they will turn into pixie dust, so view them while you can!

We probably could have spent more time at Disney than we did (never did get to Epcot, for example), but we decided that we'll have to save that all until next time, whenever that will be, hopefully soon!

Sea World was a bit of a bust, probably because it was too hot, or too crowded, or we were too cranky from a full day at Disney the day before. Or, maybe, as Allison put it, everything pales in comparison to the Magic Kingdom, which I think is true. The girls had a good time, though, got to see Shamu. Elisabeth wanted to sit in the "splash zone" until she noticed the vendors selling towels and ponchos and until Susan pointed out the kids directly in front of them were soaked through and through from the previous show. When Elisabeth decided that maybe she would rather sit with the rest of us (well out of the splash zone, thank you), Susan was quick to jump on that idea. Our favorite show was not Shamu, but the dolphin and whale show, because it had great live performers (almost like a circus) and birds that flew around the stadium.

We also spent one day at Universal Studios, which we liked a lot. There was an entire Seuss-themed area in one of the parks that was a big hit with everyone. We could have spent even more time at Universal, but there will be a next time. In fact, we had two-day passes to Universal and since we only used the first day, the passes are still good for another day and don't expire for another year. Maybe we'll have to get back in the next twelve months!

Our Wish trip was altogether special. Everything was planned for us and everything was made very, very easy for us. We felt a little guilty receiving preferential treatment, but remembering all that we have been through, the hospitalizations, the trauma, the chemotherapy, and all that is still going on (the threat of relapse that we just recently had to confront), it was nice being treated special. Sophie is special, and we're glad that she got to experience this trip--so many other children never get their final wish.

Coincidentally, tomorrow is the date for Pennies from Heaven, an annual fundraiser for Make-a-Wish of Eastern North Carolina (the agency that granted Sophie's wish). G105, a local radio station is working with this fundraiser and more information can be found on their website at:

http://www.bobandtheshowgram.com/pennies_2k6.html

All in all, we had a fantastic experience, thanks to the folks at Make-A-Wish and Give Kids the World. Thanks also to our friends who have supported us, our community that has done so much for us, our church that let me go for a week to do this with my family, and all of you, who keep up with us regularly and check in from time to time.

Posted by Randall at 09:41 AM | Permalink | Comments (4)