Sophie's World

12:39 PM Just a quick update. Susan is doing much, much better. She no longer requires multiple, heavy doses of Advil just to breathe, but she is still taking them as a preventative measure. We're so thankful that this turned out to be nothing terribly serious, and we're even more thankful that she is slowly but surely getting better. She even went in to work today, so she must be feeling better! Thanks to everyone for your prayers and support. It was pretty scary last Thursday, and even though things worked out, a 10-hour emergency room visit is never a welcome experience.

Posted by Randall at 12:39 PM | Permalink | Comments (2)

1:04 PM Gosh, things have been happening quickly for us lately. The good news is that we are all well, so we give thanks for that. Susan seems to have no lingering problems with her pleuritic pain, and she even had a follow-up appointment with our regular doctor that went well. Sophie is trucking right along--she is spending this week in Virginia with her "Grammy" and, from what we can tell, she is having a grand time. When I dropped her off on Monday, she was practically bouncing off the walls she was so excited, and when it came time to say good-bye, she simply said, "Bye-Bye, Randall!" (she thinks it's cute when she calls me by my name and she does it with pride). There were no tears or crying or anything. We've talked every night since then and she's as happy as a clam. I'm glad that we've been close enough to Susan's mom and grandmother these past few years for the girls to get to know them as well as they have.

Speaking of which, we have news about where we are going. I have been appointed to serve at Hamlin Memorial UMC in Farwell, Texas. My sister (hi, Sabine!)--who has turned out to be a bit of a "Texas chauvinist"--seemed very happy that we would soon be fellow Texans. Actually, we're only going to be "just barely" Texans because Farwell sits on the New Mexico/Texas state line. As Susan puts it, after being several days' drive (or a long flight) away from New Mexico for the past five years, we will now be able to walk to New Mexico on a regular basis. In fact, Clovis, New Mexico is about 8-10 miles away.

For those of you who are wondering, we will be about equidistant from Amarillo and Lubbock, Texas, both of which have hospitals that are affiliated with the Children's Oncology Group. Our doctors in Chapel Hill are coordinating a relationship with one of the facilities in that area (we aren't sure yet which one), so Sophie will be getting follow-up care in either Amarillo or Lubbock. That care will consist of once-a-month check-ups and blood draws the first year, which will eventually taper off to once-a-year check-ups for the rest of her life. I am very thankful that the New Mexico Conference was able to find us an appointment within reasonable distance of a children's oncology hospital (they are 1 1/2 to 2 hours away). Given the enormous size of the New Mexico Conference, we could have been placed several hours away from a COG facility.

Of course, the finality and reality of this appointment means that we really are going to move. Although we are very excited by the change and the promise of a new experience and looking forward to being in Farwell and the congregation there, it also means that we are going to be saying good-bye to this community, our church, Elisabeth's school, Sophie's day care, all our friends, and Susan's work (although she will continue to "tele-commute"). This place has meant so much to us, especially after what we have been through with Sophie's illness.

It is a time of very mixed emotions. None of us "wants" to leave this place, although we have known for the past five years that it would only be temporary. We have nevertheless made some really strong connections that will be hard to let go of. Up till now, nobody has taken us up on the offer to go with us to Farwell (although I had a clergy friend jokingly ask if he could go along--I think he's unhappy where he is serving).

Throughout this whole experience of Sophie's illness and treatment, I have had the sense that we were being carried--carried by the prayers and support of a wide community of friends and loved ones, and (more importantly) carried by the hands of God. Looking back, I think that we were not just carried through this experience, but carried to it, and I would include in that being carried to North Carolina in the first place. We are still being carried, even as we are getting "carried away." That gives us a great deal of comfort and a great deal of confidence as we face these uncertain days. I hope and I pray that all our friends who keep up with us on this blog will continue to carry us as we enter into this period of change and transition in our lives.

Posted by Randall at 01:04 PM | Permalink

6:30 AM: It's been so long since I've posted that I hardly know what to say! Preparing for the move is going well. Randall has taken care of so many things. There are packed boxes all over the house and in the storage building out back. We're going with a freight company called ABF, and although we have to load the truck ourselves, we will have the truck here at the house for 3 days, which makes loading a lot less frantic. We also get a guaranteed delivery date, so we don't have to worry about our stuff beating us there or waiting for days on end once we do get there. Our plan is start driving out on June 9 and spend some time with Randall's family along the way. He has made hotel reservations for the last two night of our drive, and we should get there in the morning on Friday, June 15.

That's just a fraction of what he has done. What have I done? Hardly anything, because I've mostly been in denial about moving. Now, I should say, I'm excited about where we are going and am really looking forward to meeting new people and making new friends. I think the town we are moving to will be great for the girls (how will I sleep at night without tractor-trailers driving by all hours of the night??). But I have grown attached to the people here, and I am not looking forward to saying goodbye. I've hardly packed anything in my office at work. I haven't yet filled out the telecommuting agreement (I REALLY need to get that done today!). I only have six working days left in the office, unless I go in extra days. I absolutely won't miss that commute (at least an hour, usually more), but oh how I will miss seeing the faces of the people I work with. Thankfully, RTI will pay for me to come back for occasional meetings, and there's already one in late June that I can look forward to. Maybe the biggest thing for me is no longer being 4 hours away from my mom. It's not like we were driving up there every weekend, but it was great that I *could* drive up there for the weekend (or she could come down here). But we're already planning for her to come down to visit when I'm here for work trips, so I can look forward to that. I don't want to sound negative, because I am looking forward to our new life. I'm going to feel this way whenever we leave one place and move to another.

The timing of Sophie's treatments and the move has worked out really well. On Tuesday, she goes in to clinic for her last dose of vincristine (through an IV), and then sedation on June 5 for methotrexate through a spinal tap and that last bone marrow biopsy. We get to throw all the chemo pills away on June 1, and Sophie will finally be able to eat after 7:00 (she takes one medication at bedtime on an empty stomach). There's a little tiny part of me that doesn't want to talk out loud about being done with treatment, because we just never know if we're truly done. I know the risk of relapse is really small, and there's no reason to expect that she would. But I guess we've lived under the cloud of "what if" for so long, it's hard to turn off those feelings. It's not like I think that way all the time, but it always occupies a tiny little corner of my mind.

I'm tempted to delete this whole entry now that I'm re-reading it, but it reflects how I am feeling (excited and sad), so I guess I'll post it!

Posted by Susan at 06:33 AM | Permalink | Comments (1)

9:56 AM Today is Sophie's Birthday! She is 5 years old today. For some reason, this feels like a big deal to me. Maybe it's the general state of meaningfulness that we're in, but this is an exciting event. She got to open a couple of presents this morning before school (a dress from Oma and a Scooby-Doo game from Grammy). She's been in such a cheerful mood lately, too, so we've had a very good time with her. She's especially proud of her birthday and the fact that she's growing up.

Tomorrow we go to Chapel Hill for her next-to-last clinic visit. Tomorrow is also the start of her last 5-day course of steroids. Of all the challenges that we have been through with Sophie's treatment, I think the steroids have been the worst. The steroids often brought out a cranky, always-hungry, fly-off-the-handle and never-sleeping-through-the-night Sophie, not to mention the difficult reminder of the dark days when we first started treatment, or the even longer periods when she got to be so big and lost all her hair. The steroids have been a monthly reminder that, yeah, we're dealing with life and death here, and powerful, powerful drugs. We won't be sad to throw away whatever is left of the steroids on Saturday after Sophie takes her final dosage.

Posted by Randall at 09:56 AM | Permalink | Comments (1)

4:42 PM Just a quick update to say that Sophie's treatment on Tuesday went well. Unfortunately, it involved two "pokes" rather than the one we were hoping for, but it was over quickly (just a small dose of vincristine). The "end" of chemotherapy has been a little anticlimactic, I suppose, since we'll be back at the clinic in two weeks. I have some pictures from Tuesday's clinic trip, and I'll try to upload them soon. June 5th might be a bigger deal, we'll see. Steroids are definitely kicking in this week (and we have until Saturday--yikes). Mostly, Sophie's just been crabby and whiny. We will be so thankful to make it through Saturday. I just realized that Sophie's birthday party on Saturday at Chuck-E-Cheese's (naturally) will fall on the last day of steroids. Should be fun!

Posted by Randall at 04:42 PM | Permalink