Sophie's World

9:15 PM: I bet you've been wondering where we've been and what's been going on! Well, it's been mostly uneventful, but I'll share a few details.

On Friday, I took Sophie to the clinic to have the nurse practitioner (Stephanie) help us change Sophie's dressing on her PICC line (with the help of the recreational therapist, who tried in vain to distract her). Sophie and I talked a lot before we got there about how it would go, and she seemed like she was going to be okay with it, but when the time came, she cried, screamed, and kicked. Stephanie used Detachol (an adhesive remover) to loosen the dressing, which helped a lot with the pain of removing it (although it took a lot longer). We had stopped using Detachol on her chest, because it seemed to really irritate her skin, but her arm skin doesn't seem to be sensitive to anything yet. Then, once the dressing was off, Stephanie was able to get nearly all of the dried blood off her skin and the line, leaving just a small amount right near where the line goes into her skin. Because the area had healed and wasn't bleeding anymore, the alcohol and ChloraPrep didn't sting or hurt Sophie like it usually does. By the time the whole thing was over, Sophie was talking about how it wasn't bleeding and it didn't hurt as much as she thought it would. I won't say that I'm expecting her next dressing change to be a breeze, but I do think it will be better.

We had a nice relaxing weekend, and on Sunday after church, we headed up to Virginia to spend some time with my mom during the Labor Day holiday. That night, right before midnight, Sophie was crying in her room, and she felt hot. You guessed it--she had a fever. We called the on-call doctor, and he said we'd better take her to the local emergency room (Lynchburg General Hospital). We knew what to expect (draw blood for a CBC and blood culture; administer an antibiotic by IV called Rocephin), but this doctor wanted to draw blood not only from her PICC line, but also peripherally from her other arm (they do this to help determine whether an infection is confined to the line or whether it's actually in her bloodstream. This is a great idea in theory, but Sophie hasn't had an IV inserted in her (while conscious, at least) since January of 2005, and I knew it wouldn't be an easy thing to do. But we had already been talking about doing a peripheral IV in her hand next time she goes to clinic, so I told her we would try the cream and do a little poke. I had the nurse put cream on me too (and we covered the cream with Tegaderm, which is a dressing similar to what we cover her line with), and then Sophie went to get a chest x-ray while we waited for the cream to work (Sophie has been coughing so they wanted to make sure her chest was clear). When the nurse came to insert the IV, we had to peel off the Tegaderm, and the screaming started (Sophie, not me--I did fine pulling mine off). Honestly, I think pulling off that little dressing hurt more than a needle would have! Anyhow, once she was upset about that, she was really squeamish about the nurse touching her arm to locate a vein. The nurse called in a second person, and they both decided that the vein on her elbow was too deep, and the one on her hand was too flat (or something). They talked with the doctor, who said we would skip the peripheral draw and just culture the one from her PICC line. At 4:00 AM, we came home (but it's only a 15 minute drive instead of an hour and a half, like it is at home). She had a couple more fevers during the day on Monday, but the antibiotic lasts 24 hours. The good news is that we checked with the doctor today, and the culture has stayed clear (and her counts are good), so it looks like she must have a little upper respiratory virus (which means no hospital admission, and the line can stay in for now).

After losing so much sleep (Randall hardly slept while we were gone, because he was so worried about us), we decided to stay at mom's an extra day (that meant Elisabeth missed school though). We sorted through (and rearranged) tons of stuff at mom's house. It's been very hard for her emotionally to change anything in the house since Nannie died, but with some support from us, we accomplished a lot. I think Nannie would want Mom to make the house her own and would be happy that Mom will continue to live there.

We're back home now, and I'll go back to work tomorrow for the first time in over a month. I'm not sure how I feel about that, but I'm sure it will be fine!

Posted by Susan at 09:13 PM | Permalink

9:33 PM Well, another week is quickly coming to a close. I think we're settling into some kind of routine, although it may be too early to tell. Sophie has been to Countryside for two days in a row now, and was pretty cheerful this morning at drop-off (it helped that her best friend Tamar was there, along with her new best friend, Madelyn (whose mother Deanna posts comments here on Sophie's blog)--I have taken to calling them the "Three Amigos" or the "Three Musketeers." Elisabeth is settling back into school (she's excited about an upcoming field trip and she'll resume piano lessons tomorrow at school). Susan's day back at work went well, and she's planning on going in three days next week (I think). It's nice for her to be able to ease back in, and it's nice that her co-workers are taking it easy on her and making her feel very welcome.

Tomorrow, Susan's mom is coming down for a visit. It'll be nice to see her, and I'm sure it'll be nice for her to be away from home for a while. It's been a long time since she's been able to visit, with Nannie being sick and all. The girls are going to a slumber party tomorrow night, so the grown-ups have plans to go out to dinner. Everyone is excited! Next week, Susan and I will take the opportunity to get away for a night and stay at the Washington Duke Inn up in Durham (I won a complimentary night in a Duke Divinity alumni drawing this past spring and we're finally getting around to using it).

Sophie will get a dressing change tomorrow. This morning, as she was getting dressed (and getting her tail caught in her sleeve), she said, "I'm tired of things coming out of me." Yeah, we're all tired of it, sweetie. If we can only convince her to take a peripheral IV once a month, we can do without anything hanging out of you all the time. Sophie goes back to the clinic on 9/19. Maybe by then she'll be okay with an IV.

Posted by Randall at 09:33 PM | Permalink

10:30 PM: We haven't posted an update in a while, but all is well. Mom is visiting, so we've been too busy hanging out, doing fun things, and visiting to spend much time on the computer. Sophie is doing just fine. Her cough is all but gone, and she feels well. The dressing change on Friday went pretty badly, but it did get changed. I know it will get better, but I do hope it will work out to get rid of the PICC line after her next treatment on 9/19.

Elisabeth's birthday is on Thursday, and she's very excited about it. It's nice that Mom can be here for that. Randall and I will actually not be here for most of her birthday. Randall won a drawing for a free night at the Washington Duke Inn, so we're redeeming that and going out to dinner in Durham. Mom and the girls have big plans for that night, so she'll have a good time (and we'll celebrate with her that morning and at her small party on Saturday).

We found out today that Sophie's Make-a-Wish trip to Disney World will almost definitely be November 13-19. Of course, Sophie is scheduled for treatment that week, but I'm sure they can move it forward to the week before. Just one more official sign-off, but they say there's no reason to think it won't happen on those dates. It's exciting to have the date set and know it's going to happen. What a wonderful treat that will be!

Posted by Susan at 10:33 PM | Permalink | Comments (3)

6:45 PM: It's been a busy but mostly uneventful week. No new health problems with Sophie, so that's good. Her dressing change was pretty traumatic on Friday, especially when the line started moving in and out of her arm when she was thrashing around (this was after I had gotten the dressing off). It seems impossible that we could do this for another nine months, but I know she eventually got used to the dressing change on her chest, so I know it would get better. But I'm very anxious to see how it goes trying to do a peripheral IV at the clinic on Tuesday. Sophie said today (sort of out of the blue--I don't know why) that she doesn't want to get blood taken out of her "other arm" this week. We'll see how it goes.

Elisabeth had a great birthday and received some really thoughtful, nice gifts. She's also thrilled to be old enough to get rid of the booster seat in the car. We've already given one of them to another family.

Randall and I had a wonderful time on our evening out this week. The room (it was actually a suite) at the Washington Duke Inn was very nice, and dinner out (and shopping) was a real pleasure. It was nice to take the time off and be together (and know that my mom was taking such good care of the girls).

Today after church, we went to the county fair and had a great time. I was amazed that Elisabeth rode several "adult" rides and really enjoyed herself. She even went on one that went upside-down (she only did that one once though!). I was nrealy in tears watching my little girl on such a big ride, similng from ear to ear. Sophie was much more cautious but also enjoyed herself. When Randall gets back from youth group at church, we'll go out to dinner for our "date night" while mom takes care of the girls. We'll be sorry to see her leave! (Not just for all the baby sitting, but also because we like her!).

Posted by Susan at 06:44 PM | Permalink

7:51 PM We have wonderful news to report! Sophie is IV catheter-free for the first time in almost 20 months! Susan and Sophie left early this morning for her monthly treatment at Chapel Hill (she got a spinal tap and a "squirt" of vincristine today). We had hoped that Sophie would be mostly cooperative about having a peripheral IV for blood draws and treatment so that we can remove the PICC line. Today was the big day.

Sophie complained a lot last night about going to the clinic. She was quite clear that she did not want to go to the clinic at all, but we reminded her that this is one of those things that she can't argue her way out of. She was not at all happy about even trying the IV stick this morning (they use a numbing cream to help with the actual needle insertion, but we had become convinced that much of Sophie's anxiety is just that, and not a reaction to pain). The play therapist worked with her and the two of them "practiced" on a sock monkey. The therapist kept calling the IV a "straw" that would go in the monkey's hand. When the time came, there was great trauma and great drama, but she got the peripheral IV. Once that was done, she was mostly fine. She even forgot to freak out about going into the "scary room" where the spinal tap is done--she asked Dr. Gold whether he forgot to put her blankie over her head. She's come a long way, that's for sure.

When she came out of the sedation, the spinal tap was done, the squirt of chemotherapy was done, and the PICC line was gone. Most of the dressing for her peripheral IV was gone too, with just some paper tape holding it in. When it was time to go, out the IV came, and Sophie was a free girl! As Dr. Gold pointed out, there will be a noticeable improvement in our quality of life. When Susan told me on the phone that the PICC line was gone, it brought tears to my eyes. I'm so proud of Sophie that she was able to make the peripheral IV work. This evening, Sophie got a real bath for the first time in more than a year and a half. No keeping body parts out of the water, no covering up body parts or anything (not counting, of course, the four band-aids she has all over her body--hand, arm, back, chest).

This evening, it was almost overwhelming to think--no more saline and heparin flushes. No more cap changes. No more dressing changes. No more heightened risk for a bacterial infection that requires hospitalization and aggressive antibiotic treatment. It's almost as if, I hesitate to say it, that Sophie is a normal kid once again. I realize that monthly IV sticks are no walk in the park, and it's possible that we won't be able to do the peripheral IV indefinitely (in which case, Sophie will get a port-a-cath, which is a small access valve implanted under her skin for blood draws and IV medicine). This has been a big, big day, and we have all been on cloud nine all afternoon!

Posted by Randall at 07:50 PM | Permalink | Comments (6)

9:15 PM We've been through one week with Sophie "catheter-free." It's not been a party the whole time, though. Sophie's reaction to the steroids this past week was more difficult than we had hoped--irrational, irritable, unable to sleep through the night, etc. The "'roid rage" seemed to kick in earlier last week as well. On Thursday, Sophie's preschool teacher commented that she was more emotional than normal. She suspected the steroids, but wasn't certain. We were. After all of our excitement about Sophie taking a "real" bath, she has been less than excited. Bathtime usually consists of Sophie crying her head off while I give her a bath. Granted, it has nothing to do with her physical health, just being tired, frustrated, or unwilling to take a bath at that very moment. It also seems as if the meds have made her feel more aches and pains this time around--as late as last night at dance class (one day off steroids), she cried and cried and cried about her knee hurting (then again, there was the incident with jumping on the bed late last week that did not turn out well. I don't think she'll be jumping on the bed anymore). I haven't missed a single saline heparin flush, a single cap change, or a single dressing change. Thanks be to God!

Elisabeth is doing well, also. We had our first parent-teacher conference for Elisabeth's progress reports. She's doing very, very well in school this year. We're so proud of her. It seems as if she's even doing better in school this year than last year. Maybe having a (relatively) stable home life makes a difference! She's certainly enjoying school a lot this year. Third grade is a great age to be in school, I think. There's so much to learn and you already know so much. I'm having fun drilling Elisabeth on her multiplication--I vividly remember pacing around the kitchen when I was a kid, memorizing the multiplication table. Her least favorite subject is math, although she does very well in it. We try to encourage math and science as much as possible, but it doesn't take much.

I mentioned to Elisabeth that I would make a plea on Sophie's weblog for help with her fundraisers at school. Don't be afraid, I am not trying to sell you anything. The school collects can tabs and box tops from General Mills products. It's a relatively easy way to raise money for the school, because nearly everyone gets a canned beverage now and then (some of us more than we should), or uses General Mills products. If you are interested in supporting Elisabeth's fundraising efforts, save your can tabs and/or General Mills box tops (the little one-inch-square logo is sufficient, I think) and send them to us. It might be fun to see where we get boxtops and cans from!

Thanks for checking in and continue to keep us all in your prayers!

Posted by Randall at 09:15 PM | Permalink | Comments (1)