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May 02, 2006


10:25 PM Once again, apologies for being away. Actually, we haven't been away, just away from the computer. I'll try to cover everything that has happened.

Sophie's counts from her blood draw were great. She was bumped up to 75% dosage, which gets a little tricky because it means we give her half a pill 4 nights a week and a whole pill 3 nights a week (or something like that--Susan knows much better than I do and thankfully, she creates a chart for us so we can keep it straight). Her cough seems to be better, although she seems to get a coughing fit just when I think she's fine. This last time Sophie was admitted to UNC, the doctors prescribed an inhaler, and it wouldn't surprise me if she has a touch of asthma--her coughing certainly seems to follow whenever she's been exercising a lot or is otherwise very stimulated.

Our big excitement is that both girls have a dance recital this weekend. The dress rehearsal was Sunday, and from what I hear, both girls did great. Sophie has a habit of standing around in dance class (in other words, not dancing), but she did the whole routine on Sunday without a problem. She is such an entertainer--even parents I don't recognize know who Sophie is. It's kind of weird.

Speaking of dance class, our friend T'yanna came to dance class tonight. She's been home for a while (went in for four days last week for treatment), and I think she looks much better. She's lost all her hair and is quite thin and weak, but it's clear that she is no longer in a great deal of pain. T'yanna was in the same class as Elisabeth and she got to try on her dance costume for the first time tonight. We're hoping that she'll be able to attend the recital and at least make an appearance in costume. We continue to keep T'yanna and her family in our prayers.

My big accomplishment (other than being free from schoolwork--that is still sinking in) was to get organized for our Church-wide Yard Sale. We have so much stuff in our storage building out back that we need to get rid of. I threw out a lot of things that we had been saving that simply would not sell, organized what might sell into a "pile" and straightened up everything else. Susan reminded me that our New Year's resolution for this year was to straighten up the building, and I guess maybe I did it today!

Tomorrow evening, I will go up to Virginia to help out and visit with Susan's mom and grandmother. I'll be back late Friday, but I'm hoping that it will be helpful to have me around for at least a couple of days. Under the circumstances, it's nice to have an extra pair of hands, and since I don't have class anymore, I figured I could go up and help out a bit.

Sorry for not posting more frequently, but as we've said before, we're really trying to carve out more family time, which doesn't make for much time in front of the computer.

May 03, 2006


9:30 PM: Well, Randall left tonight to head up to Virginia. He'll probably get there just before midnight. I already miss him! The girls behaved really well after he left, and I'm feeling pretty patient, so we enjoyed ourselves.

A couple of issues we're keeping our eye on with Sophie. OPne thing is that she seems to have developed some kind of rash. It started with bumps (they look like pimples) on her face that we noticed yesterday when we picked her up from school. Then today, the bumps had spread to her chest and arms and the skin around the bumps is redder and more irritated-looking. She says it doesn't itch (and is clearly tired of us asking her if it does). Randall called the doctor this afternoon, who suggested we give her benadryl. But when we told her about Sophie's paprdoxical (hysterical) reactions to benadryl, she said we cold try doubling her zyrtec (giving it to her in the morning as well as at night). I'm skeptical that it will help, but we'll give it a try tomorrow. I have to go in to work tomorrow after I get the girls dropped off, so I hope it doesn't get so bad that ehr day care feels she needs to be picked up.

The second thing we're kind of worried about is that her chest catheter seems to be getting "stopped up" somehow. We first noticed it when Amy came to do the blood draw last Thursday. She was eventually able to get blood to come out, but it took a while. Then when I tried to flush her line over the weekend, I absolutely couldn't push or pull with the saline. That has happened twice before and we had to take her to an ER to administer a special "clot-busting" medicine. Randall called the doctor, who asked whether we had tried having Sophie put her arms over her head (sometimes the line gets kinked). I tried that while Randall was still on the phone and with a little pressure, I was able to get the saline to flow. But then Randall was worried that I might have just pushed a clot into her bloodstream. Time to panic! So we called the doctor again, and he said I probably should have pulled instead of pushing but that if it had been a clot, she would have had immediate respiratory distress (because the clot would have gone into her lungs). Since she seemed fine, we breathed a sigh of relief and learned our lesson. When I flushed the line on Monday, I didn't have any trouble at all. Tonight, unfortunately, I had the same problem again. I had her stand on the floor, put her arms over her head and kind of pulsed the syringe as a I pushed, ever so gently. With hardly any pressure, I got the saline to go in. Then I used a second syringe to check her blood return (make sure I could pull blood out as well as push the saline in). And then I put in a little extra heparin (which fills her line and prevents clotting) just to be sure. It seems like this must be a kinking issue and not a clotting issue, but I'm going to call the doctor and see if there's something I can do before Friday (when I need to flush her line again) or if there's any kind of test they can do when we go in this Tuesday. Are your eyes glazing over yet??

May 04, 2006


9:25 PM: Well, it's been quite a day. I got the girls off to school and day care early this morning and headed in to RTI for a full day of work and meetings. A little after 2:00, I got a call from Sophie's day care that her rash seemed worse (red, irritated skin--and spreading to new areas). I called the on-call doctor, who said it sounds like they need to see it. There was no way I was going to get home, pick her up, and drive back to get her in to the clinic that day. He suggested I take her to our local pediatrician to have her seen and then plan on bringing her in to clinic at Chapel Hill the next day. They want to rule out things like chicken pox and herpes (he said it doesn't sound like those things, but he wants to be sure). He called the pediatrician for me to explain the situation, but the office was closing for the day. He thought taking her to the ER was overkill and suggested that unless I felt otherwise when I saw her myself, I should just plan on bringing her in tomorrow. So that's what I'll do after I get Elisabeth dropped off. A nurse friend stopped by tonight and said it looked to her like hives and that maybe the zyrtec is strong enough to keep it from itching but not strong enough to take care of the hives. The areas really seem concentrated on her face and lower arms (basically, everywhere that's not normally covered up by clothing), so I'm wondering if the septra is causing some kind of sun sensitivity. What I mostly hope is that they will take one look at her tomorrow, know exactly what it is, and know exactly how to fix it. That's probably wishful thinking, but I can always dream!

When I was talking with the doctor today (who I really like--I think we communicate well), I mentioned telling Melissa (T'yanna's mom) on Tuesday that I hoped he would be on call when they call in sometime because she hadn't had the pleasure of talking with him yet. He let me know that he had actually been on call last night and spoke with her and that they ended up admitting her (they wouldn't normally share patient information like that, but he knows I'm a friend and that Melissa wouldn't mind). I called and found out that T'yanna ended up getting a fever and it turns out that her ANC was low (which probably means she shouldn't have been out visiting earlier this week--but who knows?). If they can keep her fever down and her blood cultures come back clear, she might be released before the weekend, but we'll just have to see. Even if she is released, I'm sure her counts will remain low, so the recital is probably not going to work out. But Melissa is going to find out if they can put a mask on her or something, because T'yanna really wants to go. If the doctors say it's okay, we'll try to visit T'yanna while we're up there tomorrow.

Randall is having a good, productive visit with my mom and grandmother. Their big accomplishment for the day was rearranging the living room furniture so that Nannie can see the TV better (she has a lift chair that had been facing away from the TV). He'll stay again tonight and return home sometime tomorrow.

May 05, 2006


8:30 PM: Sophie and I had a good trip to the clinic today. We got Elisabeth sent off on the bus and headed on up to Chapel Hill. She was worried that they might give her a shot, but once I told her that I really thought they wouldn't do that (I didn't want to promise for sure, because you never know!), she seemed fine. She sang a made-up song and all kinds of things on the way there, and that kept her entertained for a long time. She said she would keep singing if I didn't laugh or smile or sing along, and eventually I wasn't even allowed to look at her in the rear-view mirror. Silly girl.

The docs aren't exactly sure what the spots on her face are, but for now we're treating it as an allergic reaction. Instead of benadryl (which they would normally presribe, but it makes her hysterical), they gave her a dose of atarax and sent us home with a prescription. I wasn't sure it was making a difference while we were there, but by later this afternoon, the spots looked much better. It makes her a little sleepy, but that's okay with me. The funny part was when the doctor said (talking about the antihistamine) that we would "give it a shot" and Sophie said, "I don't want a shot!" We were able to explain it to her, but I bet Dr. Fu will never use that expression around a child again!

She's also been coughing a lot, and the doctor heard some rattling in her left lung. They did a chest x-ray (which didn't show anything) but decided to prescribe a short course of zithromax, just in case she's working on an infection. I was also eager to see how things would go with the flush and cap change she was due for today. I was really hoping that it would do the same thing so I could see how they handled it. Of course, when they flushed the line it behaved perfectly, but that may have been due to the extra heparin I used on Wednesday. They suggested we always use that amount--she has gained some weight (35.8 pounds, 39.5 inches) and I guess that makes a difference.

We visited wtih T'yanna and Melissa while we were waiting to see how the atarax was affecting her. In fact, we visited so long, the clinic had to ask a nurse to tell us to come back (it's a good thing I told them where I was going). T'yanna looked great and seemed to feel well. She was asleep when we first arrived and it took her a while to wake up completely, but once she did, she was all smiles and sweetness. It was so good to see her doing so well. She didn't have a fever this morning, so there's a definite possibility she could come home tomorrow. It depends on her ANC.

Randall had a good trip home. He hit some traffic coming through the Triangle, but he was able to get home in time to meet us for dinner. We drove home from dinner through a terrible thunderstorm, and it's still raining a lot. Unfortunately, our church has a big yard sale planned for tomorrow. The chance of rain tomorrow is actually pretty low, but it's probably going to be too muddy to hold the sale. We'll see. We have a rain date scheduled for next weekend, but our family will be busy with graduation activities! We were really hoping to get rid of some of our baby stuff.

Thanks for the comments today--we love to hear from our visitors!

May 08, 2006


8:00 PM: What a weekend! The yard sale at church went well. We had a break in the rain that morning, and it wasn't too muddy. We didn't have as many people as we had hoped, but we cleared nearly $1000 for the church's building fund, and our family was able to get rid of quite a few things (but not everything). We felt like there was a lot more we could have taken, but quite a few people commented on how much stuff we brought (and sold). I'm a packrat--what can I say?

The church service went well on Sunday morning. Randall felt really good about his sermon, and one of our church members told him that if she were going to preach one sermon herself, that would have been it--he covered several things she thinks really need to be heard. He normally teaches the confirmation class on Sunday night, but we had the recital to go to, so he met with them during the Sunday School hour, and I covered his regular class. We're doing a study of several world religions (one per week, so it's not terribly in-depth, but it is interesting). This week's topic was Hinduism, which is way outside what I know, but we all learned together.

The recital went really well. The girls both did such a great job. Sophie was in one number (and she was right in the middle of the line of little girls, so we had a good view of her), and Elisabeth was in three dances (we also had a good view of her, because she was always on the same side we were sitting on). Sophie was as cute as a button (to which she generally responds, "buttons aren't cute!") and pretty much did everything she was supposed to do, except when she kept spinning around and everyone else had moved on to the next part of the dance. I hope you can't hear us both saying "Sophie stop spinning!" at the same time on the DVD (which we ordered today). Elisabeth was beautiful and graceful. She's really come a long way in the last three years of dancing. I enjoyed watching all the other kds too. Some girls in particular were in quite a few dances (they must take classes every night!) and put such energy and spark into their dancing--they were especially fun to watch). T'yanna wasn't able to make it to the recital--she's still in the hospital--but her little sister Madison was there. She's in the same class as Sophie.

It was a late night. We joined our friends Howard and Allison and their daughter Madi (not T'yanna's sister, but a different Madi, who just finished up treatment for ALL a few months ago). It was after 10:00 when we got home. I've been working a lot more than normal lately and stayed up until after 1:00 AM trying to get things ready for this morning. I plan to relax a little bit tonight (and promised Randall I wouldn't try to work whle he took the girls to dance class). When Sophie gets home tonight, we'll do her dressing change, and I'll flush her line. I'm really curious to see whether we have trouble with that. Sophie and I will get up very early to get her to Chapel Hill for her monthly treatment. She gets a spinal tap tomorrow, and I'm sure they'll check her rash and lungs. Both seem to be better, but not completely.

May 09, 2006


10:44 pm It's been a while since I posted, and even though I didn't take Sophie to the clinic today, I thought I would give an update. Susan and Sophie left very, very early this morning and were #2 in line for sedation at the clinic. Sophie was a little scared about the sedation (Susan has been putting Sophie's "blankie" over her head, and that seems to help some), but it went fine as usual. Susan often has great stories to tell about Sophie coming out of sedation. For example, Sophie's usually hungry because she can't eat anything prior to the spinal tap, so when she is coming out of the sedation, she can't quite manage to eat, but insists on feeding herself. "There's two spoons!" she yells out (even though there really is only one spoon, she just sees two). Sophie is also very generous with her food as she's coming out of sedation, offering it to the nurses and whoever happens to be in the room with her at the time. It's always nice to see other families who we know through the clinic. A young boy named Ryan, for example, is entering maintenance. I can remember meeting his father several months ago as they were just starting treatment. Susan also visited T'yanna in the hospital, and she is doing well--Melissa (T'yanna's mom) said that they had a great day--the best in a while.

Our other good news for today is that Elisabeth got all A's on her mid-grading period progress report. She's so matter-of-fact about school, it's nice to know that she's doing well (although we expect that from her). Speaking of doing well in school, one of the possible side-effects of the leukemia treatment can be developmental delays. Susan arranged for Sophie to be tested next month when we go into the clinic just to see where she's at. Mostly we'd like to get a baseline from which we can make comparisons, although from our vantage point, Sophie is not suffering from any developmental issues at all.

And, if I can brag a little on myself (always makes me uncomfortable, but I guess I'd like to share), it looks as if I will graduate magna cum laude on Sunday. I was holding out for summa (highest honors), but I missed it by a few hundredths of a point. Under the circumstances (having a family, serving a church, and having a child with a major medical issue), I'm very, very happy to have done as well as I have. I'm excited and anxious about what life after school is going to be like, but it's nice to have it come to a close here. I picked up my gown and hood for the baccalaureate ceremony today, so it's becoming real to me.

Our other major milestone today was that Sophie is now about 1 year away from completing her treatment. Her counts today came back very strong, so she is back up to 100% of the chemotherapy dosages for the first time in months, and we're hopeful that we have 12 more months of smooth sailing. Of course, we will deal with whatever challenges and unexpected "blips" when they come, but we are now counting down to the day when we are out of treatment. And another thing. We got word this past week that Make-A-Wish will be in touch with us soon about arranging Sophie's wish. We're expecting a trip to Disney World, although who knows what Sophie will come up with!

May 11, 2006


9:36 PM Another busy day in Sophie's World. Sophie's rash/reaction on her face and arms seems to come and go. I thought it might be related to sun exposure (one of the antiobiotics she takes regularly can lead to sun reactions), so when I took Sophie to day care today, I insisted that she wear a hat and sunscreen. At first, she was kind of into the idea of wearing a hat--especially when I let her pick from several options. She finally decided on one and we were ready to go. Then, at the last minute, she traded the practical bonnet that shaded her face to the more fashionable white straw hat with a pink flowery band. And in spite of the more dashing choice, she began to have second thoughts.

"Are the kids going to think I'm a cowboy?"

"No," I said, "nobody is going to think you're a cowboy in a white straw hat with a pink, flowery band."

"But what if the kids laugh at me?"

"So, let them laugh. Are you happy with your hat?"

"Yes, I am."

"Well, then, don't worry about what other kids think about you."

By the time we got to Countryside, she was obviously quite nervous about the hat, so we took it off right away and put it up for only when she went outside. As it turned out, nobody thought she was a cowboy and nobody laughed (for which I am extremely grateful). Sophie even enjoyed wearing the hat, except for when it got windy and it got carried off and she needed to chase after it, but I think she probably enjoyed that as well because she was giggling about it when I picked her up this afternoon.

Sophie is definitely on steroids, so we get glimpses and glances of 'roid rage' every know and then. This morning it was because I gave each girl a package of fruit gummi chews (there were only two). Sophie wanted both of them. Boy, did I hear it from then on out. Nothing would satisfy her, nothing would make it better (except for another package of fruit chews, but I had already promised them to Elisabeth). We have two more days (or so) of this round of steroids, and, as always, we'll be happy when it's over! The good news is that we are about one year out from finishing therapy altogether, so we have about 12 more five-day rounds of steroids. Sounds like a lot, but at least it's a definite number.

A couple of updates on other major events. I found out today that the commissioning service (where I will be commissioned as a probationary elder in The United Methodist Church) has been moved. Originally, it was scheduled at 7:00pm, on Friday, June 2nd, but now it will be held at 11:00am on the same day. I know that some folks had expressed an interest in coming to Glorieta for the service, and I hope this won't affect that in any way. I'd really look forward to seeing you!

The Baccalaureate Service for Duke Divinity School is this Saturday, May 13th at 6:30pm. It will be broadcast live via the web, and you can get some more information at the Duke Chapel website http://www.chapel.duke.edu/calendar/viewevent.aspx?id=701.

Thanks for checking in!

May 14, 2006


9:25 PM Okay. How much time do you have to read this update? I'll try and be brief, but there's a lot of ground to cover. Friday, we left to go to Greensboro and Susan's coworker's dress rehearsal. We were unable to attend the wedding (it conflicted with my Baccalaureate), but we were able to attend the dress rehearsal and dinner afterwards, which was held on a sprawling farm south of Greensboro, with geese and goats and guineas (and if I may pause for an inside joke--Sabine, watch out for that guinea!), horses and donkeys and turkeys. The girls had a great time and I spent a lot of my time chasing after them, going to the pond, going to the barn, going to the pond, you get the picture. We had a great time and it was lovely seeing all of Brett and Jennifer's family and friends.

Unfortunately, our hotel room was probably the smallest on record, which made having four of us together in one room a bit difficult. Sophie, who had been on steroids for four days at this point, was not cooperative at all about going to bed, about sleeping in the same bed as Elisabeth, about sleeping in a bed by herself once we convinced Elisabeth to sleep on the floor. Finally, Susan laid down with her and Sophie eventually went to sleep. Then, at about 2:30am on Saturday, Sophie woke up having to go potty. She was burning up with fever. We did not have a thermometer. So, I drove around Greensboro at 3:00am trying to find a place that was open and selling thermometers. I found a Wal-Mart (what did we do before Wal-Mart?) and bought a thermometer. Sophie's temp was 103.2 by the time I got back to the hotel. In the meantime, Susan had showered and was ready to go to the ER. We called UNC Chapel Hill and they directed us to Moses Cone Hospital in Greensboro. Once we got directions, Susan headed out. Just before she left, Sophie threw up. A lot. I set up the carseat with plenty of towels, and prayed that they would make it to the hospital okay.

At the ER, they drew some blood for cultures and started an IV antibiotic. Of course, by the time somebody got Sophie's vitals at Moses Cone, the temp had started to come down. She threw up a couple more times, but before long was just fine. All in all, it was probably one of our quickest ER trips in recent memory. Susan was back at the hotel around 8:00am. We all had breakfast together (Sophie was her normal self by now), and Susan napped while the girls and I hung around at the pool. After cleaning up from the pool, we all went to lunch and then checked out of the hotel. We were hoping to pick up a sweater for Elisabeth at the mall near our hotel, since we had plenty of time to make it to Duke. Unfortunately, Elisabeth, who was probably a little distraught over the last night's activities (and quite a bit tired), was practically unbearable in the mall. We rented a stroller for Sophie, thinking she probably couldn't handle the walk, well, then Elisabeth complained about her legs hurting. None of us was on our best behavior, and after quite a few tears and some sharp words, we got a sweater and left the mall. We then drove to Durham for my ceremony--looking forward to the joyous, happy occasion, as you might imagine!

I needed to be at Duke by 5:30, and the service ran from 6:30-8:00. Dinner was going to be a problem. We got to Duke, got parking, and managed to find something to eat on campus (although it was not as easy as I expected). Susan and the girls ate while I went to get ready for the ceremony. When Susan and the girls finished eating and headed for Duke Chapel, they managed to get lost, and Susan, with two girls in tow, spent some time walking around the Divinity School trying to get to the Chapel. Once they found their way, the Chapel was nearly packed, and the only seats to be had were behind a column, so the three of them could see nothing. Susan was at the point of tears (she tells me). After a while, the pew in front of Susan opened up and she was able to grab that. We were both very, very thankful that as I processed in, we were able to make eye contact. It had been a very difficult weekend.

At one point early Saturday, I offered that we should just go home. It wasn't that important to me that I go through the ritual of this ceremony. I know what I have accomplished, what I gave up to accomplish it, what it has cost me and what I have gained. Susan insisted that we go--it was important to us as a family. I'm glad, in retrospect, that we went, even if we both nearly had nervous breakdowns to make it happen.

We got home late Saturday night, and after quickly pulling things together for Sunday's worship (bulletins and whatnot), we collapsed into bed (Sophie had fallen asleep in the car and Elisabeth was not far behind). By now, Sophie seemed to return to normal. No more fevers, no more vomiting, nothing.

We got up this morning for worship, had worship, went out for Mother's Day Dinner and came home, thinking we'd all get a much-needed nap. When we got home, there was a voicemail from UNC--Sophie's blood cultures came back positive, and we needed to drive her to Chapel Hill to be admitted. Happy Mother's Day! I offered to take Sophie so that Susan could rest, but as she put it, it would be a better Mother's Day at UNC than to be at home knowing that Sophie was at UNC.

Sophie has had another blood culture drawn today and started IV antibiotics at UNC. The doctors suggested that since Sophie apparently responded so well to the IV antibiotics at Moses Cone in Greensboro, it's likely that they took care of whatever infection she had. Of course, they want to be 100% sure when they are dealing with bacteria, so they are going through these procedures at UNC. I spoke with Susan a while earlier and Sophie had another slight temperature. One doctor suggested (again) the possibility of taking out Sophie's chest catheter (a likely source for the bacterial infection), but we are not seriously having that discussion right now. None of us is sure that Sophie will be ready to get "stuck" every time she needs IV medicine or a blood draw, and the longer we can hold that off, the better.

We're looking at least at another 48 hours in Chapel Hill, depending upon the results of her blood cultures and whether or not she spikes another fever. Of course, we had plans for any number of things this week (including a quick trip to DC for myself), but all of those are on hold. We were beginning to think that maybe we could plan and schedule our lives once again, but maybe that is not the case, or maybe we need to have a plan B ready.

Please continue to keep Sophie and all of us in your thoughts and prayers. We are confident that all shall be well, but, of course, we are just as anxious and just as uncertain as you might imagine us to be in these moments of crises.

May 15, 2006


2:30 PM: Sophie's having a good day here in the hospital. It took her forever to go to sleep last night with me in the room. But once she was out for good, she slept well--we both did.

I have more information from the doctor this morning. It turns out that the preliminary identification of the bacteria that they did on Saturday was wrong, which is actually good news, because it means that this is a completely different infection than what she had before. The other infection was a "gram positive cocci" and this one is a "gram negative rod" which is generally a type of intestinal infection. Because this is completely unrelated to her previous infection, we don't need to think about taking out or replacing her line.

The other good news is that the antibiotic they gave in at the ER (rocephin) works well against the type of infection she has, so it looks like we might be able to treat Saturday as "day 1" instead of starting from Sunday night, which means the course of antibiotics will be shorter from here. They have her on rocephin (also called ceftriaxone) and gentamycin. We're waiting on a few more pieces of information at this point. First, we're waiting to see whether the blood culture they took last night grows anything (it hadn't as of a few hours ago). If it doesn't then that's a good sign that the rocephin started working on Saturday; if it does grow something, then that might change the course of treatment. Second, we're waiting on the specific identification of the bacteria. They know what general class it is, but the formal diagnosis of the specific type hasn't come in. The antibiotics they have her on now might need to be changed depending on what she has. Third, we're waiting on the sensitivities. They "treat" the bacteria that was growing in her blood from Saturday's positive culture to see what types of medications (and at what levels) it reacts to. Obviously they're treating her at the same time, but if the tests show the bacteria is more sensitive to some other type of medication, they'll switch her to that. Once all that is narrowed down, they'll get her to a stabilized set and dosage of antibiotics and we'll continue to administer them at home. He said it's quite likely we can get her down to a once-a-day dose of IV antibiotics (it was three time a last time we came home). He thinks the earliest we would go home is Wednesday night.

She's had a couple of fevers, but they don't seem worried about that. Her ANC has dropped from 6.4 on Saturday morning to 1.6 this morning. That's still fairly high (she doesn't need to wear a mask or anything), but dropping that quickly probably means she'll be neutropenic (at risk of other infections) before too long. We'll enjoy our freedom while we can. If she ever wakes up from her nap, I'll take her to the playroom upstairs.

Randall is on his way in and will stay with her tonight, and I'll come back tomorrow. He had a trip planned to see a speaker in Washington DC tomorrow night and spend the night, so we're trying to get things lined up so he can still do that. I'm eager to spend some time with Elisabeth tonight. It will be nice when Sophie's home and we can all be together at the same time.

May 16, 2006


2:00 PM: Time feels like it just creeps by in the hospital sometimes, but when I look back at the last 24 hours, it seems like a lot has happened. Randall stayed with Sophie last night, and I went home. Although going home might sound like a desirable thing, I find that it's really not. Going home means facing the world (which, amazingly, goes on as if my daughter weren't in the hospital). Laundry still piles up, things around the house still demand attention (including the cats), church events still need to be planned, work assignments are still pending. When I'm in the hospital, it's easier to tune those sorts of things out. At home, everywhere I look there's something to be done, and all I really want to do is nothing. At any rate, I do feel refreshed (and my back very much appreciated my own mattress).

I dropped Elisabeth off at school this morning and headed straight in. We needed to have the car serviced and inspected (yet another thing we needed to take care of), so I took it and waited while they did the work. I grabbed lunch for me and Randall, and we spent about an hour together before he had to head up to Washington DC. He was feeling very anxious about getting up there (navigating, not being late, leaving us here, etc.), but I think once he gets settled he'll be really glad he went. I'll obviously stay with Sophie tonight, and Elisabeth will be staying with Ms. Patti from church. She was really looking forward to it. I think they both were!

Sophie still seems to be feeling just fine. She continues to run fevers, and Sunday night's culture unfortunately came back positive. They took another culture last night, but it has to stay negative for 48 hours, so Thursday morning is now the earliest Sophie would be released. The formal identification of Saturday morning's culture is in. You'll remember from yesterday's update that they knew it was a gram negative rod (actually I said yesterday that it was a gram positive rod, but I edited the entry to correct it--how could I have made such an obvious mistake, I'm sure you're wondering!). They have now determined that what she has is "sphingomonas," which they say is relatively unusual and somewhat difficult to treat. The little bit of research I did with a google search didn't seem to indicate that it is resistant or difficult to treat, but perhaps when a central line is involved, that complicates things. The doctors did tell Randall that the two medicines she is currently taking are the recommended course of treatment for this type of bacteria. Now we just have to wait on the sensitivities to determine whether she really does need to be on both antibiotics, just one, or something different completely. It sounded like they weren't concerned about having us administer two IV antibiotics at home, so maybe we won't have to stay here until all antibiotics are done.

They did not run blood tests this morning like they usually do (maybe because they did a blood draw late last night), so we don't know what her ANC is today. Because it was dropping so quickly, they're going to go ahead and assume she's neutropenic, which means masks in the hallway, closed doors, and (most important to her) one-on-one time in the playroom.

The other little development is that Dr. Gold (the attending pediatric oncologist--or head honcho doc) stopped by yesterday afternoon before I left. I mentioned our relief that Dr. Weston said we didn't need to talk about removing Sophie's line. Dr. Gold said it's fine to keep the line in, but that this might be a good time think about having it removed. He knows how incredibly hysterical she gets in the clinic at the thought of a needle, but he suggested that we might just introduce things slowly, with no negative associations, and see if we can ease into it. He said he would bring some EMLA cream (a numbing cream that contains lidocaine) and some "press and stick" bandages to keep it in place. He thought we could try just putting it on her hand and then taking it off a few times, just to get her used to having it on. I bet if I come up with a fun game, we can make this work. We can just try a few things out while her line is still in, and if we have several successes, we can talk about removing the line. But if it's a total disaster, the line can stay in. I have to admit that it would be really nice not to have to flush the line three times a week, change the dressing weekly, take baths without a bib and taping up the cap, go swimming, and reduce the risk of future infections. It would be great if we could make this work.

5/16/06 PM

6:30 PM: We had a visit from the hospital's infectious disease specialist this afternoon. It was interesting but also a little distressing. He asked a lot of questions about how things had been leading up to our admission. He was especially interested in her rash, but it's pretty much gone, so there was nothing to see. He said that this bacteria is usually water-borne through direct contact. But it's pretty unusual for a kid to be admitted with it (our doctors were struggling even to pronounce it, they were so unfamiliar with it). The sensitivities are back, and the two antibiotics she's on are what the cultured bacteria are most responding to. One of the reasons they called in the infectious disease doctor is to get a recommendation from him as to whether both antibiotics are necessary, or whether we could just use the rocephin. Rocephin is only administered once a day, but the gentamycin is three times a day, so we'd be doing IV antibiotics at home four times a day (but we can certainly handle that). What worried me most about talking with this new doctor today is that he is concerned about the second positive culture and continued fevers, because if the infection is in the line, it's harder to treat. If the culture they took last night turns up positive (which is has not yet), from his perspective, the best strategy would be to remove the line, make sure the infection is completely cleared (indicated by multiple negative blood cultures), do her treatments through a peripheral IV for a short period, and then we can put a new line in if needed. I wasn't quite ready to consider that possibility yet, so I mentioned my concern to Dr. Westin and Dr. Coulter when they came to visit a little later. They both immediately shook their heads and said he always says that. Dr. Westin said not to worry: "We will remove no line before its time." I felt much better after that.

Sophie had a good nap and a fun time in the play room. Dr. Coulter played with her with the dollhouse, and he was being very silly (he has a six-year-old, so he's good at being a silly daddy). Sophie's been off her IV since about 12:30 and will go back on for her antibiotic in just a few minutes. It's been really nice not dragging the pole around all afternoon.

I just got a call from Patti, who said that Elisabeth is having a great time. Elisabeth actually talked to me (she usually won't talk to me when she's visiting someone else). Then Sophie talked to Elisabeth and then Patti talked to Sophie, so it was a regular chat-fest.

May 17, 2006

5/17/06 AM

8:30 AM: We had a pretty good night, but Sophie did have a very high fever (103.1) right at bedtime. That's not a good sign. It didn't make her at all uncomfortable, and it came down quickly with tylenol. As always, I took a book and sat outside her room so she could go to sleep, but the nurses kept coming in, or the phone would ring, so she was pretty much awake until I went to sleep at 11:00. Did she sleep in this morning? No! She was up at 6:30. There will be a nap today.

The doctor just came to talk to me, and he said the culture they took on the 15th (Monday night) is still negative, but it hasn't been a full 48 hours yet. He's encouraged that it continues to be negative but is worried by the fevers, expecially as high as it got last night. Because of the fever, they took another culture at 3:00 this morning. He said that if the culture from the 15th comes back positive in the next 8-10 hours, we'll have to remove her central line. If that happens, they'll do a peripheral IV (probably in her hand) until the infection is definitely cleared and then they would put in a new line before we go home. So they would only have to stick her one time--not too bad. On the other hand, if the culture stays negative, we could be going home tomorrow morning. The good news is that her ANC was 1.4 this morning, so she doesn't have to wear a mask and go to the playroom without an appointment (and can play with the other kids).

Patti called this morning to say that Elisabeth is complaining of an upset stomach and was in tears about going back to school. She wasn't sure what I would want her to do. I suggested keeping Elisabeth home a bit longer, possibly giving her Tums or Pepto Bismol, and see how she does. It's hard to tell whether she really is coming down with something, or whether she's upset about Sophie, or whether she is just not ready to say goodbye to Patti yet. Whatever it is, I figure when Sophie's in the hospital, it's okay to bend a few rules.

May 18, 2006

5/18/06 AM

9:30 AM: We had a great day yesterday, and everything is turning out right, medically-speaking. The blood culture from the 15th has stayed negative, and she didn't have any fevers yesterday, so things are looking good for getting out of here. The doctors checked in with us this morning and said they just need to stabilize the dosage of the gentamycin, so we can be released either late tonight or early tomorrow. Given how far away we live, Randall and I think tomorrow would be better. He's going to take care of some things at home and then pick up Elisabeth and bring her here. We'll hang out together for a while and then I'll take Elisabeth home (and I'll probably take a load of Sophie's things with me so there won't be so much to haul tomorrow). I asked how long the course of antibiotics will be (last time it was 10 days). They said because this infection is a little more serious, she'll be on both antibiotics for 14 days, which will run through 5/29. Amazingly, that's the day before we leave for New Mexico, so we'll be in good shape for travelling. The doctors said there's no reason we shouldn't be able to take her on the trip.

One hard thing about being in the hospital is meeting families whose children have relapsed. Two we've met this time are Aurora, age 5, whose Wilms tumors (kidney tumors) have now spread to her lungs, and Maci, age 3, who has relapsed from Acute Myelogenous Leukemia (AML). Many people who have seen Sophie say that her hair looks like Maci's did before it fell out this second time. These girls we've met are both adorable and have really nice families. We'll certainly be holding them in our hearts.

May 19, 2006


2:33 PM We're home! Late this morning, the MDs came to Sophie's room with some unsettling news. Because Sophie had cultures done at Moses Cone (in Greensboro) and at UNC, there were two different labs running sensitivities. Although the two labs agreed on the identification of the bacteria, they did not agree on the sensitivity. UNC's lab had the bacteria sensitive to one drug (I will never get the name right, so I won't try) and Moses Cone had found sensitivity to another drug. I was certain that this would mean a setback, but, thankfully, it didn't. Because Sophie has had no more positive cultures, and because she has been fever free for quite some time now, the MDs at UNC think they've got the infection under control. Just to be on the safe side, however, they changed one of the two drugs that Sophie will be getting at home. Sophie will now be getting two IV antibiotics back-to-back at 8-hour intervals. She received the first back-to-back doses at the hospital this morning, and we are waiting for the pharmacy to ship the next ten days' worth of drugs. After the doses of antiobiotics, Sophie was "cut" free from the IV pole and we were ready to go. Actually, Sophie wanted to make a few more trips around the floor in her little pink car, which I referred to as her "victory lap." It was good to pack up and leave!

Sophie and I stopped at McDonald's on the way home and she ate pretty well--a whole hamburger (without the ham, she said). She fell asleep about 3 miles from our house, which is typical. I poured her into bed and haven't heard a peep out of her since.

Tonight our church is having a campout at a member's pond. Since it is our first night together at home as a family, I think we'll put in an appearance but then head home. It'll be so nice to be all under the same roof once again!

Thanks for all the support, encouragement, and prayers. We have certainly needed them and appreciated them this week.

May 20, 2006


10:15 PM: It's been a good day at home together as a family. Sophie feels just fine, and taking care of the antibiotics is going well. When she came home, she was on a schedule of 11AM, 7PM, 3AM. We can move the time up or back a half hour, so we're backing her up to a schedule of 8AM, 4PM, 12AM, which seems to work better for us and will allow her to spend most of the day at Countryside. All of us took long naps today--maybe one of these days we'll catch up on all the sleep we've missed.

One thing we've been enjoying together since we've all been home is the DVD of the girls' recital. If you are interested in ordering a copy (they are $33 each), you can get them online: DVD version and VHS version. We ordered ours online and didn't have any problems. If you get one, Sophie is in Teddy Bear which is the last piece in the first half, and Elisabeth is in three pieces in the second half: Polar Express, Storms of Africa, and Shine.

Tomorrow is Sophie's birthday, and she's looking forward to opening her presents. What we're most excited about is the new booster seats we got for each car. We're installing them tonight and surprising her in the morning. Our plan for brthday party festivities is to have a little party at Countryside for the kids in her class sometime this week and then do the Chuck E. Cheese thing in Fayetteville on Saturday. That location isn't exactly my preference, but she's been very clear that it's what she wants. It beats last year, when her counts were so low we couldn't have a party at all and just had cake at home with the four of us.

May 22, 2006


9:18 PM Today was another day closer to "normal" here in Sophie's World. Susan went in to work (although not as early as usual--she got up in the middle of the night to do Sophie's antibiotics), and both girls went to school. One of them was more reluctant than usual (Elisabeth), which presented a certain challenge that I did not handle particularly well. Sophie, who usually pitches a holy fit when it's time to go to school after she's been away for a while, was perfectly happy going. I think it was her new car seat. Today on the way home, she commented, "I just love my new car seat!" It really is very pretty, for a car seat.

The IV antibiotics are going well, I think. It's a hassle, to say the least, to administer the two of them every 8 hours, but we're getting closer to a schedule that is more comfortable (8am, 4pm, and midnight). There's really no way around the middle of the night dosage, but every night we're one night closer to being done (these antibiotics run through 5/29).

Our birthday plans are as follows: Sophie will have a birthday party in her class at Countryside some day this week (probably Wednesday or Thursday), on Saturday, we'll have another party (for non-classroom friends) at Chuck E. Cheese's in Fayetteville. Sophie is really, really looking forward to it. I'm hoping that we'll be able to take pictures and figure out a way to post them on the blog.

As for all of Sophie's presents, it's hard to figure out which is her favorite. She's excited about the Dora scooter (thanks, Oma), but she's a little nervous about it. Of course, Elisabeth gets on it and just goes all over the place, so at least Sophie can see how it's supposed to be done (a lot--Elisabeth, as big sister, is "trying out" all of Sophie's presents; she even keeps saying, "I sure do wish I could sit in Sophie's car seat!"). This afternoon, Sophie and I got to play with her Floam (as seen on TV). I have to say, I was a little disappointed, even if Sophie got a big kick out of it. Once Elisabeth got home, both girls were trying out their new sidewalk chalk, so we're getting some good mileage out of these gifts.

I was hoping that once we got through the dance recital (and dance classes on Mondays and Tuesdays), our family time in the evenings would develop into some really nice quality time, but this week (our first without dance classes) we've got Revival at church every night, which means a quick dinner and off to church and afterwards a mad dash to get the girls in bed at a decent hour. Next week, we're heading to New Mexico, so maybe then we'll have more time to spend together as a family, with fewer external commitments.

Speaking of a mad dash to get the girls in bed, tonight's dressing change was a bit traumatic. Unfortunately, the dressing material they use at the hospital (although the same brand) is slightly different than what we're used to, and is particularly tacky at the edges. When Susan took Sophie's dressing off tonight, it actually pulled up some of Sophie's skin and she started to bleed. Needless to say, Sophie was uncomfortable and unhappy, and if Sophie's unhappy, she lets you know it! I think by now she's recovered (although I doubt she's asleep).

It's just so great to all be home together as a family.

May 24, 2006

5/24/06 AM

8:30 AM: We had such a stressful day yesterday, we didn't have the energy to do an update last night. Perhaps with a good night's sleep behind me (Randall did the middle-of-the-night IV meds for Sophie last night), I'll discuss our day a little more calmly.

When Sophie came home from the hospital last Friday, the infusion pharmacy we used (Curascript--nearest office located in Greensboro) sent the medicine by courier, and it arrived an hour or so before she was due to have it at 7:00 PM. They said they could only give us four days' worth at that time because it took so long to mix and they had not been given very much notice to prepare it. Yesterday was when we were due to get another shipment. I called at 8:50 yesterday and got the answering service, and then Randall called at 9:30 and spoke to someone who told him a shipment was going out at noon. Randall said we had a few extra supplies it would be nice to have but that they shouldn't hold up the medicines just to get us the supplies; he said he would do his best to include the extra items (and would make sure they didn't send the "default" items--like needles--that we don't need or want).

As we've mentioned, we had "backed up" her dose to get Sophie on a schedule that was convenient for taking her to day care, so she was due at 4:00 yesterday. When we still didn't have the medicine at 3:30, Randall called again and spoke to a pharmacist, who said according to their records, she had enough medicine to take her through her morning (11AM) dose the next day, so they hadn't mixed or shipped anything. Well, even if we hadn't backed up the dose, we would only have had enough medicine to run through 7:00 that day, so their calculations were clearly wrong. He advised us that we should have asked to speak to the pharmacist when Randall called in the morning, because whoever we spoke to didn't know what was going on (obviously!). I'm not sure how we should have known to ask for a pharmacist, since no one had ever told us that before, and it's not in their materials, but I guess we know now. He said he would mix up a batch and have it shipped to arrive by 7:00 (on time according to their notes, but 3 hours overdue based on our schedule). Randall called our doctor, who was irritated by that but said it wouldn't harm her to have the medicine that late.

The pharmacist called me at 5:30 to say the driver had left at 5:15 and would arrive by 7:30. I again expressed my irritation, but there really wasn't anything I could do. Revival (which went well) was from 7-8, so I stayed home with Sophie to wait for the shipment while Randall took Elisabeth to church. When 7:30 came and went and there was no sign of the courier, I called the answering service (who said they would look into it), and then I called the doctor to see if we needed to come up with a contingency plan. He said as long as she got a dose within 24 hours (8:00 AM), he wouldn't worry. The other option would be to take her to the local ER, but that would carry a risk of getting some other kind of infection. He got the number for the pharmacy and said he would see what he could do.

The medicine finally arrived at 8:00 PM, and I hooked her up right away. I called the doctor to let him know he could stop trying to get in touch with the pharmacy--he said he had really let whoever he talked to have it, but it was probably the answering service, so it probably won't matter. Then the head nurse called me at about 9:00, very apologetic. She said she had been out of twon for 5 days and had not been on top of thing like she usually is. She checked the medicines and where Sophie was in the course of treatment and reassured me that Sophie would be fine (which I knew) and said she would look into why there was a problem. I said my primary concern was that we had again received only four days' worth of medicine (the next shipment would be coming on a Saturday of a holiday weekend), and I didn't want to have this happen again. She assured me that I would have Sophe's medicine on Friday, but if I hadn't received it by 6:00 on Friday, to call the answering service--she would be on call that night and would ensure we had the medicine in time. That's great, but I do think we'll be calling the head of the Greensboro office today to register a complaint.

It's frustrating enough to receive supplies we didn't ask for and don't need, to put up with "kits" that don't contain the right pieces, and to ask for supplies and be sent the wrong things. But we just can't tolerate miscommunication that results in significantly delayed medication for our daughter--even if this time the delay won't affect her health. We'll obviously stay with this company long enough to get the rest of her medication through 5/29, but we'll be looking for a pharmacy that fits our needs better, and we'll let our insurance company (who recommended this pharmacy) know about the problems we've had.

Meanwhile, Sophie's rash is back, probably because she was out in the sun yesterday. I put sunscreen on her before she left for school, but maybe it's the heat or UVB instead of UVA rays causing the problem. We put her back on Atarax and will hope that makes a difference. She'll be home today until after her 10:00-11:00 dose (the doctor said we can back up the dose one hour at a time). We ordered cupcakes to take to her class this afternoon, so she can celebrate her birthday with her school friends today.

May 25, 2006


9:25 PM First of all, thanks for all the kind comments about our frustration with our infusion pharmacy. It's nice to know that we aren't being totally irrational in our irritation! We got another shipment of antibiotics today. They were due tomorrow, so I guess the folks at Curascript are trying to do right by us. But it doesn't help that when I called today about the shipment, I was told (from the pharmacist) that UPS would deliver the drugs tomorrow. An hour later, the pharmacist called and claimed he "mis-spoke" (who is he and what elected office is he running for?). The drugs had already left and a courier would deliver them this evening. We had to cut short our lovely walk at Sampson Nursery to come home in time to meet the courier, but I think we're all set for the duration of this round of antibiotics (although there is some question as to whether "until" 5/29 includes 5/29 or not--more on that later, I guess).

Today has been a good day. Sophie had a visit from Home Health this morning, which went mostly fine. This visit was for a couple of reasons. First, it was to check "peak" and "trough" levels--to check the levels of antibiotic in Sophie's bloodstream before and after treatment. No word yet on how that went. Second, we're hoping to get a good measure of Sophie's ANC (a check on her immune system) before we travel next week. I have to admit that since the last two times we've traveled together as a family Sophie got sick (either during or immediately afterwards), I'm very, very nervous about being away from UNC for a whole week!

Sophie continues to have a recurrence of her rash. In fact, I noticed last night as we got ready for her bath that she was itching her arms pretty roughly. Today, I sent her to school in a long sleeve shirt in an effort to keep her covered up some more. I think it worked. Unfortunately, the hat I sent to school with her was where I had left it, and she was out and about hatless this afternoon when I picked her up. I will speak to the teachers tomorrow about making sure that Sophie wears a hat outside and (hopefully) make sure that she gets sunscreen applied beforehand. If that doesn't help after a few days, we may need to keep her indoors or pick her up before the kids go outside. I hate to have to keep her from going outside, because I know how much she enjoys that, but I can't bear to see her with a rash all over her face, neck, and arms.

Elisabeth is in the midst of her grade assessments this week. I think she's doing well--she seems unconcerned (as usual). I picked her up early today and hauled her around with me as I did errands. I think she enjoyed that time together and feeling like she was helping out. We can now count the number of days Elisabeth has in school on one hand (especially considering she'll be out for five days on our trip to New Mexico). If elementary school hasn't changed much since I was in it, those last couple of weeks are all downhill anyway--I noticed that the kids are already watching a lot of videos, at least based on what I hear from Elisabeth.

Susan finally went to urgent care today about her foot. She injured it last week in the hospital. The x-ray didn't conclusively show a break, but the Dr. showed her how to tape up the baby toe and suggested it would take a couple of weeks to get better.

Susan's mom asked today if I'm settling into life after school. I guess so. It's so hard to tell because our life has been so chaotic and stressful these past two weeks. Check in with me in another couple of weeks. Hopefully I'll have an answer by then!

May 29, 2006


12:53 PM We had a very full weekend, which is why we haven't gotten around to posting since before the weekend. Sophie and I are having a (mostly) restful day at home today. Susan is at work and Elisabeth is at school (believe it or not). My primary task today is to get us prepared to leave for New Mexico tomorrow morning, although that task involves lots of little odds and ends that need to be done.

Here's a brief recap of our weekend. Sophie had a great birthday party at Chuck E. Cheese's. This was the first time that we paid to have the party at Chuck's (typically, we just go and commandeer a booth, order a pizza, spring for some tokens, and we're done). I'm still not entirely sure that this was the best financial decision, but it was nice having a "host" to help us with all that needed to be done--she even cut the cake for us! Sophie was not in to getting her picture taken with Chuck, either, so that wasn't a big deal. Nearly everyone we invited was able to come, although we missed a couple of folks. Everyone seemed to have a great time. Sophie finally got the hang of the climbing structure (I call it a HabitTrail, like those they used to have for hamsters or gerbils), but it took a while. At one point, I could her Sophie complaining loudly from the top of the slide, with a good five or six other children behind her encouraging her to just go down the slide. I called to her and that seemed to do the trick. She came down with a huge smile on her face and immediately said, "I want to do that again!" It was great getting to Chuck E. Cheese's first thing in the morning, because it was not as hectic as it can be.

Sunday was fairly typical--church and Sunday School, although we went over to our friends Bob and Patti's afterwards for hamburgers and hot dogs. The girls love spending time over there, so that was nice. I had confirmation class Sunday evening, so Susan stayed home with the girls while I did that--unfortunately, Susan seems to be coming down with something (or perhaps it's allergies)--and Sophie got sick while I was gone. Apparently, she threw up several times and was quite miserable. She had complained about a "head-ick" (headache) all afternoon, but then she said she felt better. Susan gave Sophie a bath and some anti-nausea (Zofran), and by the time I got home things seemed calmer. Susan and the doctors (of course, we called the doctors--anything more serious than a hangnail requires a call to the doctor) thought maybe Sophie got overheated and/or dehydrated playing outside. It's been very hot this weekend, so that may be the case.

Before I forget, a quick update on our Home Health visit last week. The antibiotic levels were fine, so we're nearly done with that. Sophie's ANC (the measure of her immune system) was quite low, 0.7. For the time being, we're cutting back her chemotherapy to 50% to keep her from dropping any further (especially since we're traveling this week). Sophie has a clinic visit scheduled June 7th, so we'll get another check then. When I was on the phone with the Nurse Practitioner from the clinic, we reviewed our options for care in New Mexico, provided Sophie might need something while we're out there. We both agreed that short of a life-or-death emergency, we would take Sophie to the University of New Mexico hospital in Albuquerque. That is the only Children's Oncology Group hospital in the state, and hopefully, they would know how to handle Sophie's situation better than any other hospital. Of course, we are hoping and praying that we won't need to make a visit to UNM, but at least we have a plan.

We're all looking forward to getting away for a couple of days at least. I'm looking forward to seeing friends in the church from Annual Conference (and getting commissioned, of course). Most of all, it'll be nice to have "family time" together with no other pressures or constraints other than traveling!