Sophie's World

8:45 PM Today has been a beautiful day here in North Carolina! It felt and looked and sounded like spring. Unfortunately, there seems to be a very nasty cold going around (obviously, since Sophie has been sick). Many people in the church have had this latest virus, and it seems to manifest itself with a pretty serious cough.

Susan is definitely under the weather, and she is so stressed about work I'm sure that she's struggling to stay afloat. She's not sleeping well at night, either, which doesn't help. Susan seriously considered going to the doctor's today, but couldn't squeeze in a visit between her meetings and appointments at work.

Sophie still coughs every now and then, but for the most part seems to be feeling well. She was very chipper this morning when I got her ready for school (for a change, usually Wednesdays are a real challenge). Not much to report other than sick call. We had an Ash Wednesday service at church tonight that was better-attended than I expected. I had a productive day at home (preparing for worship and getting caught up on bills and whatnot--I can finally see that there is a surface to my desk other than piles of paperwork and mail)

Posted by Randall at 08:42 PM | Permalink | Comments (1)

7:30 PM: It's been a while I have posted. I'm still feeling very crummy. I did manage to go to the doctor's office this morning. He said I probably have a viral upper respiratory infection, but because of the risk to Sophie and because I'm wheezing so much, he prescribed augmentin (and a decongestant/anithistamine and cough syrup with codeine). I picked it all up at lunch and have taken my first dose of antibiotics. Taking the full dose of cough medicine regularly seems to be the only thing that keeps me from hacking constantly (our family is pretty tired of hearing me cough).

Sophie is still coughing a lot too, but she's sleeping through the night (unlike her mother) and seems to be feeling well. She said she enjoyed school today (and was especially pleased with her snack of vanilla wafers with peanut butter). Elisabeth rode the bus home today and enjoyed riding her bike outside (did we mention that she now rides without training wheels?).

Cute Sophie story: Last night when Randall turned on Sophie's music, he started wiggling his behind in time to the music, and Sophie said, "Ooh yeah--shake it!"

Posted by Susan at 07:38 PM | Permalink

8:45 PM: Sophie and I are still coughing a fair amount, but I think we're both starting to recover. The medicines the doctor gave me are very helpful with the symptoms. Saturday, Randall kept the girls quiet (mostly), and I slept in until noon. Then I took a nap in the afternoon and went to bed pretty early last night. I didn't get to sleep quite as much today, but it's been pretty restful. I have to go in to work tomorrow (dentist appointment up there), so I'll try not to stay up too late.

Elisabeth has ridden her bike for hours this weekend. We're so impressed with how well she's doing. We're also trying to encourage her to practice the piano more often. Tonight Randall was working with her, and then he remembered about a card game some friends of our invented called "Crazy Eighths." They're playing it right now, and Elisabeth loves it! Here's their web site, if you want to see how it works (you can order the game there too): http://www.crazy8ths.com/.

Yesterday morning, Sophie threw up a few times. We don't think it's related to any chemo (it's been months since she's thrown up), but maybe her yogurt had gone bad or something. She seemed fine the rest of the day. She told me later that she doesn't like to throw up. I told her that most people don't. Randall called into the living room just now to tell her it's time to brush her teeth and go to bed. Without skipping a beat, she called back, "I'm fast asleep!"

Posted by Susan at 08:45 PM | Permalink

9:00 PM Today has been a good day. Susan left this morning for her dental appointment and to take care of some other errands. Elisabeth and Sophie were (mostly) in cheerful moods, and I got them dropped off/shipped off with little resistance. Sophie has been in such a pleasant mood, I know she's feeling better. Susan seems to be improving somewhat, although she is still coughing a fair amount. Unfortunately, it looks as if Elisabeth might be next up for this nasty virus. She complained throughout the day at school about a sore throat, but she never ran a temperature. I stopped by school around lunchtime to check on her and I gave her some Motrin, which seemed to help. We agreed that she should stay in school and finish the day, but that she would get to be a "car rider" (as opposed to a "bus rider" or an after-school kid). I picked Elisabeth up around 3:00 and we went to Benson, NC, which is the nearest Post Office where I can submit the paperwork for a passport--my old passport had long since expired and I need to get one for the South Africa pilgrimage this summer. After that, we came home and she rode around on her bike until the rain drove her inside. Sophie had a bath and dressing change tonight while Elisabeth and I were at dance class. I hear that the dressing change went very well, with no crying this time. Either she is getting more accustomed to the process (again) or the anti-allergy medicine she takes every night is helping. More than a year into this process and it is all becoming so ho-hum!

Posted by Randall at 09:01 PM | Permalink

8:40 PM: It was wonderful staying at home today, although I'm still tired and coughing a lot. It feels like I might never get better. The girls got off to school okay this morning. Elisabeth rode her bike for a bit before catching the bus. Sophie wanted to ride her tricycle at the same time but complained that it was too cold, so she stayed inside until the bus came. Then when I tried to take her to school, she complained about not getting to ride her tricycle! I let her go ahead and ride since we weren't in a huge hurry. She pedaled just around the front of the car and decided she was done. Go figure.

Randall went to Fayetteville this morning for a meeting and he came home in time for us to have lunch together. He spent his early afternoon dealing with that same frustrating emergency room billing issue we've been having. The person he talked to with our insurance company this time seemed to have a plan for resolving it, but he's never allowed to talk to the same person twice, and it's not clear any of the people he has ever talked to have carried out their plans. We'll see. It's really frustrating to have this issue go on for nearly a year now.

I don't know if we're extra-tired or the girls were being extra-annoying, but dinner before dance class was extra-challenging tonight. I can't even tell you the number of times the girls would be bickering back and forth with each other, saying exactly the same things to each other over and over (except each time would be louder than the last). I told Randall I'm thinking that what I should give up for Lent is my habit of emitting a deep, exasperated sigh when one of the girls demands something. I don't think it makes any of us feel very good, and I wouldn't do that if someone at work asked me to do something annoying (well, I might do it jokingly). At any rate, they both did well in dance class, and Sophie went to bed early (although she may still be awake in there) and Elisabeth went to bed on time. She wants me to get her up a little early tomorrow (at 6:50, she said) so she'll have more time to ride her bike.

Posted by Susan at 08:40 PM | Permalink | Comments (1)

7:30 PM: The girls are playing with Sophie's doctor kit (Sophie just introduced herself to Elisabeth as "Nurse Amy"--our home health nurse). It's great to listen to them playing so nicely together. Even so, I'll be gald to have Randall home tonight now that his class is done for the evening. I went in to work today, but between a dentist appointment and a long-overdue hair appointment (I hadn't had it done since December!), I didn't get a lot of work done. That's the great thing about being hourly--I don't have to make it up, I just don't get paid as much. When I picked Sophie up today, she said she had a good day at school and didn't cry at all. I guess that means drop-off went well this morning. Randall's new laptop arrived today, and he's eager to get it set up. I don't know exactly how we're going to arrange things--we bought the "cheap" computer to use until the laptop arrived, but it's a pretty reasonable machine. Maybe Randall should just keep the laptop for himself and the cheapie will be our family machine. Mostly, I'm really hoping we can get our friend from church to show us how to hook up the old computer to the new one to see if we can keep any of our old files from parts of the hard drive that aren't corrupted. There's a lot of history on that machine.

Posted by Susan at 07:34 PM | Permalink | Comments (1)

9:25 PM We're trying to wind down after a full day. Susan and I stayed home today, which was nice. We visited a member of the congregation who just had surgery today. It's nice when Susan is able to visit with me. This afternoon, Elisabeth rode the bus home and spend the better part of the afternoon riding her bike in the driveway. Later, she asked if she could visit our neighbor across the road (who happens to work in the lunch room at Elisabeth's school). I finally gave in and we visited for a while. Our neighbor's granddaughter was over there, and since she's in the 3rd grade, the girls got along pretty well. Elisabeth actually stayed there while Susan and I went to fetch Sophie. Sophie seemed to have a good day at school. She was very, very cheerful when we picked her up. We stayed home for dinner (believe it or not) and had a nice, quiet evening at home together.

Posted by Randall at 09:27 PM | Permalink

9:00 PM: We had a really nice day today. It was beautiful here--the forecast was for 80 degrees, and the girls had a great time playing outside this morning. Randall slept in and tried to fend off a headache he had when he first woke up (it worked). Once we were all finally showered and dressed, it was lunchtime, so we drove in to Fayetteville and had a nice afternoon--lunch out, a trip to Target, and a bit of grocery shopping. One of my relatives sent us a check for $30 to buy something for the girls, and they both picked Hello Kitty clock-radios (Elisabeth had been wanting a clock-radio, and when Sophie saw how cute it was, she wanted one too). It's shaped like a teacup and has a night light (a little slice of lemon sticking out of the cup).

The girls seemed particularly irritating today for some reason. They like to play "copy my words" with each other, which gets old real fast if you ask me (or Randall). Elisabeth was also just being silly, repeating or singing the same thing over and over, louder and louder, until we told her to stop (which she wouldn't do right away). She said her job today was to be irritating (mission accomplished!), to which Randall replied, "Well then, you're fired!" Sophie (who had no idea what that means) got upset because she didn't want sissy to be fired. (I guess that does sound kind of scary when you think about it). Sophie and I took naps this afternoon, Randall finished his sermon (he's practicing now), and Elisabeth made a mess of the house (she took care of that after dinner). Sophie is currently in her room, chatting away to herself. I think Elisabeth is already asleep.

Posted by Susan at 09:15 PM | Permalink

9:30 PM: We announced several weeks ago that Randall was selected to participate in a pilgrimage to South Africa later this summer. He's very excited about this upcoming opportunity and is really looking forward to the experience. The cost of the trip is $3500, not counting incidentals like passport application fees, required readings for the trip, etc. He feels a little awkward asking friends and family for financial support, especially since people have been so amazingly generous since Sophie became sick. But that's a lot of money for us to cover, so I'll ask for him! If you would like to support Randall in this pilgrimage, please call us or e-mail us directly, and we will give you information on how to contribute. For those of you who have already contributed, we are very thankful for your support. If you have any questions, just give us a call or drop us an e-mail!

Posted by Susan at 09:26 PM | Permalink

8:22 PM: Elisabeth is officially 7 and a half today--it's her half-birthday. Have you ever tried to sing "happy half-birthday to you"? It's no easy feat! Yesterday and today, she has been so agreeable, mature, and helpful. It's been wonderful, and I have complimented her frequently in the hope it will continue. She's being so lovey with Sophie. She even moved her booster seat to the middle of the back seat so they can sit right next to each other.

We're looking forward to tomorrow--Randall's dad will be visiting us for the evening. The girls are so excited. The girls are already sleeping in the same room tonight to they'll be ready to give up Sophie's room tomorrow night for grandpa. Tomorrow morning, Randall will take Sophie to Chapel Hill for treatment--she just gets vincristine (no spinal tap), so it should be a relatively quick trip (although they will have to wait for the bloodwork to come back, so it will take a little while). We're expecting Bill around lunchtime, and we'll pick Elisabeth up from school instead of having her go to afterschool care.

We started the steroids today, and she's doing well so far. She didn't complain about taking it (and in fact swallowed them tonight instead of eating them crushed up in yogurt). She's not moody yet, but she does seem tired (in fact, both girls went to bed just after 8:00, and it's remarkably quiet in there, especially considering the way they usually chat and giggle when they sleep in the same room).

Posted by Susan at 08:22 PM | Permalink | Comments (1)

9:00 PM: Sophie did great in treatment today. When she and Randall left this morning, I cried a little bit. I had been blowing her kisses through the car window, and I could see her saying "I love you mama" and I just felt sad. But before long they were back home. Not long after they pulled in, Randall's dad arrived. We grabbed a quick lunch, picked up Elisabeth early from school (we got a call that she had a headache and had been kind of mopey all day), and we went shopping and out for dinner. Sophie appetite is definitely on the rise. When we got home, she took a bath, and the girls played with their new toys (thanks, grandpa!). Sophie was excited to show grandpa how she can swallow pills. I fact, she swallowed two pills she normally chews! We'll miss him when he leaves tomorrow.

Posted by Susan at 08:56 PM | Permalink

9:00 PM Today has been a very, very full day for us all. Susan got up early this morning for a busy day at work. She left just as I was getting Elisabeth up for her morning shower--yet another thing that our rapidly maturing daughter is getting into. Elisabeth was very unhappy that Susan was not around, but she managed. I got her dressed and ready to go to school, but as we were walking out the door, I realized that we needed to say goodbye to Grandpa. That sent her over the edge. She said goodbye and held it together for a while, but she then cried so hard that she couldn't even ride her bike (given how attached she has been to her bike, that's saying something!). As the bus pulled up I was trying to get her calmed down and suggested that she could stay home long enough to pull it together, but she ran off to the bus crying. It was very heartbreaking. I guess she cried for quite some time after she got to school as well. She is so tender-hearted (I don't know where she gets that from).

I got back in the house to get Sophie off to school, and she was having none of that. She wanted to play on the computer first. Well, we needed to medicate her anyway, so she played a little bit and finally we got her dressed and out the door. Dad came with me to Countryside to drop Sophie off. Once we got to Countryside, she cried and cried and did not want me to leave. So, it was a hard morning in our household.

This evening has been better, though. Both girls clearly cheered up during the day, and both were in a good mood. The girls played together while I got dinner started and we had a nice meal together at home. Susan commented that it was nice to have me home tonight (it's the "mid-semester reading period" or Spring Break at Duke). Actually, it was nice being at home tonight. I think I'm going to like not going to school anymore! After dinner, Susan did some ironing (I would make some smartalek comment, but Susan irons at least as often as I do--once a year, whether I need it or not) and I cleaned up the kitchen. After I got the kitchen squared away, the girls and I got out Elisabeth's Easy Bake oven (thanks Eileen). Is there anything more unsatisfying to an adult than an Easy Bake oven? I know the girls got a total kick out of making "cookies," but come on--30 minutes of preparation and we end up with two cookies--one for each girl. We had fun, though, and I suppose I don't need the sweets.

Sophie seems to be doing well with this round of steroids, although she clearly is more tired and cranky than normal and she complained this morning about her legs hurting (a possible side-effect of the chemo and steroids). We found out on Wednesday that her immune system is okay, but not great, so we will not be elevating her dosages any further for the time being, and we'll get another round of blood counts in two weeks. Going to the clinic and having the nurse inject Sophie with more chemo is a difficult reminder of all that we're going through. There is such a natural tendency to try and "normalize" all of this, and it's a rude reminder to administer all these drugs again and see all the children who are going through similar or far more difficult experiences.

Posted by Randall at 09:04 PM | Permalink

5:45 PM Just a quick post to let everyone know that Sophie has been admitted to the Children's Hospital at UNC. She's been doing fine all week with the chemo, but woke up from her nap after church today with a fever of 102-103. Susan took her to Chapel Hill and given her suppressed immune system (ANC = 0.8 on Wednesday, down to 0.6 today), the fact that her fever is so high, and the fact that she is vomiting a fair amount, the doctors decided to admit her. She has been tested for the flu, in which case she'll be administered Tamiflu. Either way, she'll be at Chapel Hill until they can get a handle on her fever. The ER doctors were also concerned by how distended Sophie's stomach is, which can either be the puffiness from the steroids or an enlarged liver. She typically gets a little puffy from the steroids (even after only five days), but the doctor seemed concerned. I don't know what to add, other than that this is incredibly sudden (typical for the flu, I guess), and that it is quite a shock to our "normal" weekend!

Posted by Randall at 05:44 PM | Permalink | Comments (2)

8:00 AM I'm getting some things together to take to UNC for Susan and Sophie. They had a pretty good night, although they got interrupted a fair amount (typical for a hospital). The most challenging thing was that they gave Sophie a lot of fluids, which meant repeated trips to the bathroom, which meant being unhooked from the heart monitor and wheeling the IV pole across the room to the toilet--a big production. Susan said that Sophie seems to be doing better (she vomited several times yesterday evening). Hopefully this is just some kind of stomach bug and they'll be on their way home soon. Sophie's ANC (the measure of her immune system that we watch most closely) is still low, and another count (monocytes) which typically serves as a "precurser" to an upswing in the ANC is also low. The combination of low ANC and fever means hospital stay. We've been very happy to have been in the hospital only rarely (and not lately at all), and we'll be happier still when this little visit is done.

Posted by Randall at 08:00 AM | Permalink

8:48 AM Susan called a few minutes ago with an update. The blood cultures the doctors took yesterday came back positive for a likely staph infection, probably in her chest catheter (a "line infection"). They have Sophie on antibiotics, and will know more in the next 24 or so hours. Depending on the particular strain and the responsiveness of the bacteria to antibiotics, Sophie may need to stay at UNC for 1-14 more days. The good news is that we know what's going on, but we don't know enough to exhale. Susan will meet with another doctor at 9:00, after which I'm sure she'll know more.

Posted by Randall at 08:47 AM | Permalink

9:40 PM Another quick update. Sophie's had fevers on and off all day. The tylenol seems to help, which is great, but the fevers keep coming back. She's been on antibiotics it seems all day as well. The doctor took another blood culture this afternoon at 4:00pm. Depending on the results of that culture (which won't be back until 48 hours from the time the blood was drawn), we'll either be looking at a scenario where Sophie stays at UNC for two weeks or where she may come home (with us administering the antibiotics).

The doctor suggested the possibility of removing Sophie's chest catheter, particularly if it seems like it will become prone to infection. Sophie still gets monthly injections of chemotherapy through the line, but she can get the same drugs through an IV, which would mean getting poked once a month at the clinic for treatment. Given how needle-phobic Sophie has been lately (referring to the treatment room as the "Scary Room"), I don't know about that. Then again, Sophie was complaining about not getting to go swimming this summer, which she could do if she didn't have the catheter. On top of that, she will need to get used to needles, since she'll get monthly blood draws for a year after treatment finishes up next May. For the moment, we're hoping and praying that the infection clears up and that we won't be forced to make a decision one way or the other.

Sophie is now off all chemotherapy drugs (to help boost her immune system), but is still taking a bunch of medications--antibiotics, anti-fungal, antihistamines, anti-constipation, etc. So far, she has been a real trooper. I'm so proud of her. She is charming all the nurses and doctors at UNC, which never ceases to amaze me. I love to watch her interact with other people.

I picked Elisabeth up at a friend's house this evening--she went home with them since I could not get back in time to pick her up at after-school care. I think she's internalizing a lot of her worries and fears (I don't know where she would get that from), but it's clear that she is really, really concerned (I am too) and really, really wants to have Sophie home (I do too).

I'll go in tomorrow and relieve Susan. I'll stay the night at the hospital and let her come home and spend some time with Elisabeth and get some much-needed rest in her own bed. For now, it feels as if we are back to day-by-day mode, doing what needs to be done to get through the next 24 hours or so. In some ways, it is familiar (or as Elisabeth would say, "from-earlier"), but not any more comfortable.

Posted by Randall at 09:40 PM | Permalink

10:00 AM: Sophie seems to be feeling better today. Her last fever was at about 11:30 last night, so we're pleased it hasn't crept back up yet. She's off the heart monitor today (it had been really high when she had fevers but seems to be mostly normal now), and they reduced the fluid rate on her IV during the night (I was getting tired of taking her to the potty every half hour!). Unfortunately, her ANC (the blood count that shows risk of infection), which was heading up (.7 yesterday) was .3 this morning. They definitely won't let her go home if it's below .5, even if she seems to be responding well and the latest blood culture doesn't grow anything. This ANC level also means she has to wear a mask when she's out in the hallway, and she's not crazy about that.

They still haven't gotten an official identification of the staph bacteria, but given that she seems to be responding, they are sure they're on the right track. He also said they tested the levels of antibiotic in her system just prior to a recent dose (partly to make sure the levels aren't too high--which can cause deafness), and it turned out that her levels were low. They want the level to be perfect before they release her, so that--in combination with the lower ANC--probably means we're looking at being released on Thursday at the earliest. Bummer. He said he is worried that because she only had one or two doses of the vancomycin in her system before they did yesterday's blood culture, he's going to order another one today as a backup. It would be very disappointing to be headed for release and have something grow in yesterday's culture tomorrow. A culture taken today would run for 48 hours and would still allow us to release on Thursday if it's clear. If they wait and take a new one tomorrow, we would have to wait 48 hours until Friday. Of course, it's still possible that the treatment will ultimately be so complicated that they decide to keep her here to administer the full 2 weeks of IV antibiotics.

I feel incredibly lucky to have with us today a student nurse from UNC, who is assigned just to Sophie. In addition to taking her vital signs and helping administer medicine, she's just hanging out with Sophie, and playing, and laughing, and they are having a great time. She'll be here until 2:00 today, so when Randall gets here, we're going to go out to lunch together somewhere. I'm really looking forward to that. Then sometime this afternoon I'll head home for the first time since Sunday afternoon and sleep in my own bed.

Posted by Susan at 09:55 AM | Permalink | Comments (3)

9:00 PM: Sophie has had a good day today and seems to be feeling much better. No fevers all day as far as I know. She's the queen of the floor and is making lots of new friends (young and old). We got some clarification from one of Sophie's doctors that the reason we're now looking at Thursday is that they really want to find a way to have us do the IV antibiotics at home, and if they send us home late on Wednesday, home health wouldn't be able to train us before the next dose is due. If they send us home on Thursday morning right after she gets a dose, home health can meet us at home and train us during normal working hours. That makes sense to me, and it gives me hope that (unless new information pops up tomorrow), it's looking like we won't have to stay there the whole two weeks.

I came home today and picked up Elisabeth. She's pretty sad about Sophie being gone and really wants to see her. Tomorrow I need to go in to take care of some things in the morning, but a friend of ours is going to pick her up from school, drive her to Chapel Hill, drive her home and let her spend the night and take her to school the next day. (I can't believe we have friends who would go to those lengths for us!). That way, the girls get to see each other (which should be healing for both of them), and Randall and I can actually stay with Sophie together for longer than an hour. We've been like ships passing the night lately. Now i'm extra-thankful for that double sleeper bed in Sophie's room. Speaking of beds, mine is calling. I'm going to try to fight my normal tendency to stay up really late reading when Randall's not around.

Thanks for all the comments and e-mails we've received the last few days. Your encouragement, thoughts, and prayers are very much appreciated (and they're working!).

Posted by Susan at 09:04 PM | Permalink

2:30 PM Sophie has had a great day so far. She's had lots of energy, which means she's very high maintenance, because everywhere she goes, the IV pole has to go with her, and guess who gets to push that thing around the floor for hours on end! We're hoping to have a conference with the doctors this afternoon. As I review our previous posts, it will look as if we're contradicting ourselves by what I'm about to post, but I guess that comes from making assumptions and assertions based on incomplete information. So, here's the lowdown as of 2:30 this afternoon (subject to revision and repudiation at any time after this):

Sophie's ANC has dropped to 0.2, but she has been fever free since night before last, which is great. We're still waiting to see how the cultures respond to the antibiotics, which means that we are in a holding pattern as to when we go home. If the bacteria prove to be responsive to only one antibiotic, we may go home. If it looks as if Sophie will need more than one antibiotic, we will probably stay here a while longer. We thought that Thursday might provide us a likely opportunity to get home, but now we're not so sure. Obviously, we'd rather be home than deal with the difficulties of driving back and forth and having our family in more than one place all the time. At the same time, we have no idea what to expect from the antibiotic treatment, so we're getting anxious about that.

Just got off the phone with Amy from Home Health, and she was very encouraging and positive about the antibiotic treatment, saying that it's really easy to do, so I feel better about that. Well, I guess we'll just have to wait and see. For now, it's nice that Sophie is in such a great mood (even if she's being demanding) and I'm thankful that we'll all be together as a family some time this evening.

Posted by Randall at 02:28 PM | Permalink

9:00 PM: It's been a good day for all of us. Randall and I met with one of the residents to get an update. There's still really no more specific information from the lab about the bacteria. They are treating the bacteria that grew out of blood culture by exposing samples of it to various types of antibiotics to see which ones (or combinations of them) are most effective, but there are no results yet. Until then, they are using vancomycin, which appears to be making a difference, so the chances are good she will continue on that. Unfortunately, they are finding that in order to get her to the right levels, they are going to have to start administering it every 4 hours instead of every 8 (which means that if we go home, we would have to administer it just as frequently there--that's a lot of getting up in the middle of the night). We really should hear something tomorrow about whether they feel they should start additional antibiotics. The impression we get from the attending physician is that multiple IV antibiotics would be hard to manage at home. We honestly dn't know what to hope for at this point. The resident said she would be surprised if we would be ready to go home tomorrow. That's okay. There's been no more discussion of taking her line out. I think we'll probably just see how she does once we get over this. If she gets another line infection, we can revisit the issue then.

Elisabeth and our friends came up to see Sophie tonight. The girls got to go up to the huge recreational therapy playroom and had it all to themselves (Sophie can't be around other kids right now, so they reserved the whole thing for her). They had a great time, and Sophie got to bring a couple of toys back to play with. While the girls played, we had dinner with Patti and Bob in the cafeteria (the food is surprisingly good and very reasonably priced--less than $20 for all four of us). Elisabeth headed home with them just before 7:00 and will stay at their house tonight. Randall and I will see whether we can manage to share this supposedly "double" sleeper. It's nice to be able to spend so much time together. Normally one of us is either coming from dropping Elisabeth off at school or leaving to pick her up, so 3-4 hours is usually the most we get.

Posted by Susan at 08:59 PM | Permalink | Comments (1)

9:30 AM: Sophie's attending physician just came in to talk to us. He said that her ANC is still at .2 (no improvement from yesterday). Her lymphocytes and monocytes are both on the rise, so that's a good sign that her ANC will start to go up before too long. Meanwhile, they got the sensitivites back from the lab, and her bacteria only appears to respond to vancomycin (which she's already on) and oxacillin (which has to be administered by IV every 6 hours and isn't practical to administer at home). Since it responds so well to the vanc, they'll concentrate on finding a practical dosage of that. The nurse told us yesterday that they were changing the frequency to every 4 hours because the levels in her blood were too low, even after increasing the dosage level. The doctor said this morning that he had actually ordered it every 6 hours, but he talked to the pharmacologist about finding a dosage that will work every 8 hours. If they can't get it to 8 hours, he said it would really be too hard for us to manage at home, so that's one goal for getting us out of here. The other good news on that front is that the culture they took on Wednesday (after she had been on the vanc for 24 hours) has not grown staph after 24 hours. If nothing grows after 48 hours, they will be confident that the infection is under control.

The other issue keeping her here is her low ANC. When a patient has her type of leukemia with low ANC, the standard treatment is to administer cefepime (a different antibiotic that prevents a certain type of secondary infection). He said that even though her cultures are showing no sign of this other infection, he really won't feel comfortable stopping the cefepime. Once again, he doesn't want to send us home having to administer multiple or frequent IV antibiotics, so we have to stay until her ANC is high enough to justify cutting out the cefepime. How high, we asked? He said if he just sees it improve, that will be fine with him. That's good, because as I mentioned above, her monocyptes and lymphocytes are on the rise, so the ANC is sure to follow.

As for an estimate of when the stars will be aligned properly so we can get out of here? He said he would be happy if we got out of here this weekend, but early next week is a distinct possibility. And if we can't get the vanc frequency up to 8 hours, we're here until she's had it for 14 days, which would send us into early the following week. Meanwhile, he said she'll be the healthiest kid on the floor. I distinctly remember those very same words coming out of his mouth during an earlier hospitalization.

We'll keep you posted!

Posted by Susan at 09:39 AM | Permalink | Comments (1)

1:20 PM Sophie is taking a much-needed nap (I think) and I thought I would check in. There has still been no improvement in her ANC, but everything else is looking good. They are working on an 8-hour dosage of the antibiotic and they have no concerns about any other as-yet-undiagnosed infections. All we're waiting for is Sophie's body to start beefing up her immune system and we'll head home. Our primary doctor (Dr. Gold) will be on rounds this weekend, and I understand that he's a bit more of a stickler when it comes to the ANC levels, waiting until they hit 0.5 or 0.6 before sending a patient home. I'm hoping that Sophie's ANC will pop up pretty quickly once it does rebound, at least that seems like what it has done in the past.

In the meantime, we're still trucking along. I'm ready to sleep in my own bed tonight, and will get to do just that. Susan will stay with Sophie in the hospital tonight and Elisabeth is spending the night with a friend. One reason that I'm glad Sophie is taking a nap is that for two nights in a row now she has peed in the bed. I imagine that between the fluids they keep administering and the fact that she is so darn tired, it's hard for her to rouse herself up and ask for help to go to the potty. We'll see if a little nap during the day will help.

Funny Sophie story--yesterday a respiratory therapist came by to administer albuterol (to help with a cough she seems to have developed). When he left, he said, "Well, I'll leave y'all alone!" to which Sophie replied, "We're not 'y'all' we're people!"

Posted by Randall at 01:22 PM | Permalink

8:20 AM: We had a great night. Sophie woke up at some point and said she needed to go potty (and boy did she!), so there were no accidents last night, and we both slept well. Interrupted, but well. The worst was when a nurse trainee (first night on the job) turned on the brightest overhead lights while he took Sophie's vital and took what looked like very detailed notes. I passed along some feedback to our regular nurse that perhaps someone might tell him that all the other nurses seem to do fine working in the ambient light of the monitors.

The resident came in this morning and said that Sophe's ANC was up to .3 (from .2 the last three days). Will that be high enough to get us home? Stay tuned for the next episode of... Sophie's World!

Posted by Susan at 08:21 AM | Permalink

11:30 AM: Dr. Gold (her attending physician) stopped by and said they plan to send us home tomorrow. I suggested that afternoon would be best so that Randall has time to get here and help us load up after the church service. I can probably handle it myself if he can't make it though. The doctor will confirm a time with home health, so they can have a nurse meet with us and show us how to do the IV antibiotics at home. The only thing that would change this plan is if her ANC goes down tomorrow (which no one is expecting).

I also asked him about what Dr. Weston had mentioned regarding taking the line out. He said there's no need to consider that at this point. The staph infection, as line infections go, is a relatively minor one, and he doesn't expect her to continue getting more infections. He has seen very clearly how she behaves when a needle comes anywhere near her when she's conscious, so he said he would put a new central line in before he would consider doing peripheral IVs with her. I told him I worried about how we would manage it when treatment is over and she has to get monthly blood tests. He said by then, she'll be a year older and would be able to handle it better. They definitely wouldn't want to keep the line in for that year of follow-up, because the risk of infection at that point would be much higher. Anyhow, that's over a year away, and we have more important things to deal with before then!

One bright spot this weekend is that a friend of ours, T'yanna, is here on the third floor for some tests. T'yanna takes a dance class with Elisabeth, and her sister Madi is in a class with Sophie, so our families see each other two nights a week. She was treated for Ewing's sarcoma back in 2004 but has been having some pain recently, and her mom is, of course, quite worried. I hate that any of us are in the hospital, but it sure is nice that we moms are here together so we can support each other. I'm also really enjoying spending time with her (quite large) family--real friendly folks.

Posted by Susan at 11:37 AM | Permalink | Comments (2)

1:15 PM: Randall and Elisabeth will be here any minute to help us load up and go home! Sophie's counts were actually down (.2) this morning, and we thought for a little while that they were going to make us stay, but the doctors said it's fine for us to go home. If she runs a fever, we'll have to come back, but she's not had a fever since Monday night, so we should be fine. Sophie says she wants to play with her toys at home. Home health will meet us at home at 3:30 to show us how to do her IV (it's due at 5:00).

Our friend T'yanna is not doing very well. She is having surgery in about an hour to do a biopsy of a mass in her abdomen and to insert tubes to relieve some of the swelling and pressure from fluids that is causing problems with her kidney function. I'm worried about her, and there's a part of me that wishes we weren't going home so I can be here with her.

Posted by Susan at 01:13 PM | Permalink

8:50 PM We're all home. We celebrated being here and getting to eat dinner together as a family at our own dining room table! The girls are on their way to bed (I think), and we are gearing up for a return to some kind of routine at home. As we pulled up from the hospital, the pharmacy delivery person was waiting in the driveway with Sophie's medicine. Around 5pm, a nurse from Home Health Care came to show us how to use the antibiotic infusion thing. Sophie will need this treatment 3 times a day, every 8 hours. We're hoping to get on a schedule where we can administer it at 6:30am, 2:30pm, and 10:30pm. That way, we do not have to wake up in the middle of the night to plug it in (and wait for 30-40 minutes for the infusion to finish). It feels as if we're all strung out mentally and emotionally. None of us is patient right now, and we're all quick to get frustrated. It's difficult trying to be a parent and dissuade the girls from being rude or bossy or demanding or just downright challenging. I'm hoping that we will all be able to hang in there and hold together over these next few days.

Sophie's treatment finishes up sooner than we expected--this Friday is the final day. We're going to be anxious to hear how her immune system does, but in the meantime, we're staying at home as much as possible. Maybe that's all for the better, as we'll all get some "down time" to settle back into our "normal" lives.

Posted by Randall at 08:39 PM | Permalink | Comments (2)

10:48 PM: It's so good to be home, and together as a family. We all slept very well last night. I got up at midnight to administer her antibiotics (and again at 1:00 to "cap her off" by putting saline and heparin in her line to keep it from clotting until the next administration). Once we get it warmed up from being in the refrigerator (it's actually a lot like warming a bottle), we can take care of it pretty quickly, so I can go back to sleep without too much trouble. We managed to back up the times today (we are supposed to give it every 8 hours, but we can give it up to one hour early or one hour late as needed), I just hooked her up a few minutes ago, and she didn't even wake up.

She was pretty upset about the dressing change--more than normal, and I don't know why. She has gotten much better about telling us why she's upset about things, but all she could say is that it hurt. After I finished, I lightly touched where it goes into her chest and asked if it hurt (it did). Then I touched other parts of the dressing, which she claimed also hurt. Then I touched her elbow, and she said that hurt too and started giggling, so it's hard to know what's really going on.

We had a nice day today while Elisabeth was away at school. She was in a great mood and entertained herself pretty well for the most part. We went out to lunch (ate fast food in the car) and went grocery shopping in a nearly-empty grocery store. She is totally willing to wear a mask in public (especially now that we have cute kid-sized Mickey Mouse masks from the hospital), which is huge change from a few months ago.

Update on T'yanna: They inserted tubes in her back for drainage Sunday night and actually did surgery again today for the biopsy. I talked to her dad tonight, and he said the doctors found that she does have a tumor in her abdomen (which is really distressing to hear), but they really won't know anything until they get the results of the biopsy back in a day or two. I hope they can manage her pain until then and that when the results come back, it will turn out to be something harmless. News of relapses is always very upsetting, so I hope that's not what they're facing. Please keep her and her family in your thougths and prayers. They need to hear good news.

Posted by Susan at 10:48 PM | Permalink | Comments (2)

10:15 PM: All is well in the Partin household. Our home health nurse (Amy) came today to draw blood, but we haven't heard the results yet. They'll be checking her counts, some chemistries to make sure her organs are functioning properly, and the levels of vancomycin in her blood. We haven't heard the results yet, but we're really hoping her ANC will be higher. She had a good nap this afternoon, and the girls are sleeping together tonight (they sure do love each other!). I think our patience levels are getting back to normal, now that our lives are starting to get back to normal. Thanks for all the encouragement we've received lately!

I spoke briefly with Melissa (T'yanna's mother) about how T'yanna is doing. The biopsy results are not back, but the doctors are fairly certain they know what they're dealing with, and the news is not good. The pressure in her abdomen is still very intense and painful. Tomorrow, they're doing a colostomy, which they really hope will make her more comfortable (the tumor has been compressing her intestines, so she hasn't had a bowel movement in over a week). T'yanna was moaning and crying in the background, and Melissa couldn't say much, but she said the prognosis is "not good." I asked her what the percentage was (5-year survival rate), and she said it was zero. The doctors haven't said how much longer T'yanna has, but their family is hoping for a miracle--that she will be in that less than one percent of kids who survive such a relapse. Our hearts are breaking for them. It's just all so unbelievable. I asked her if it was okay to post these details to our visitors (because I know some of you know her). She said to post everything, because they need your prayers. So, please pray for them and keep them in your thoughts.

Posted by Susan at 10:17 PM | Permalink | Comments (2)

9:15 PM: We had another good day today. We got the results of Sophe's blood test back today, and her counts are definitely going up. her ANC is up to .6, which is high enough to allow us to resume most of our activities (we'll probably keep her home from day care for the rest of the week just to be safe), but it's not quite high enough to resume her chemo. They want her to be above 1.0 before starting up again. That's been fine with us. One of the pills she usually takes has to be given on an empty stomach, so we usually have to make her stop eating after 7:00 and give it to her at bedtime. It's been wonderful not to have to say no when she's hungry after 7:00. And this child has been hungry. She has been totally obsessive about Lay's potato chips ever since she was in the hospital. She ate two large (11.5 ounce) bags during the week she was in the hospital, plus she ate a small bag of them at every lunch and dinner (the large bag was for snacks between meals!). We bought two big bags mid-day Monday, and she's nearly done with the second bag already. We just put both girls to bed a little while ago, and Sophie just called out and said, "Hey! We forgot to do our prayering!" So Randall went in there and prayed with her. When they were done, Randall gave her kisses, and she told him to tell me I need to sneak in there and kiss her little noggin (which I did).

T'yanna update:
Melissa says T'yanna is feeling much better now that she has had the colostomy. Melissa said she was on huge amounts of morphine before, but it wasn't having much effect on her pain. The poor girl has had some sort of surgery every day this week since Sunday, but it sounds like they've taken care of everything surgical for now. She's feeling much better today (and I could really hear the relief in Melissa's voice). They'll be starting chemo in the next day or two and will hope to begin shrinking the tumor. She said if it appears to be having an effect, they may be able to go home soon. She said they may do some radiation on a part of the tumor that has grown down into her leg (which is what was causing her leg pain the last couple of weeks), but they don't want to do radiation on her abdomen (maybe because it's not as effective if the particular area has already had radiation--I didn't totally understand that part). Melissa has a very positive attitude, and she says she refuses to believe that there's no hope--the power of prayer is too strong. Her doctor is doing a nationwide search for protocols and treatments that might be effective in T'yanna's situation, so the doctors certainly aren't giving up on her either.

Posted by Susan at 09:13 PM | Permalink | Comments (1)

9:30 PM Well, I suppose it would be an indication of how much our lives have returned to "normal" to say that we took Elisabeth to dance class for a special rehearsal (Elisabeth and a couple of other girls will be doing a special dance at the beginning of the recital--she is so excited), went out to dinner, and all went to a movie afterwards (Ice Age 2). Sophie will begin her final antibiotic treatment in about 30 minutes, and she is excited about that, or at least excited that it is her last. The treatments, all in all, have not been that bad and have become sort of routine. It would also seem that her food obsession (particularly for potato chips) has subsided. Of course, we just bought two pillow-sized bags of Lay's classic potato chips that she hasn't even broken into yet. Maybe that's what did it.

For all of us, it would seem that it has taken the better part of this week to recover from our adventure last week. All things told, we made it through the week just fine, although it certainly was an enormous challenge for us and a bit of a setback emotionally for me. Being back in the hospital in many ways was a bit of a relief, because the fact of the matter is that we are dealing with a serious medical issue and no matter how much we attempt to normalize it, childhood cancer is just not "normal," although it is all too common. For me, it was assuring to be in the hospital, as if to give me permission to admit to myself that Sophie is facing a potential health crisis on a daily basis. You just can't normalize that, but you sure as you-know-what can deny it. I'm thankful that Sophie has responded well to treatment, and I'm thankful that she is doing as well as she is, and, frankly, I'm thankful that it took going to the hospital to snap me out of "Oh, we're doing great, everything's great, it's not that big of a deal anymore." Maybe if I can be honest with myself and honest with others--feeling like we're being haunted by death, especially now that we are hearing of other children who have relapsed and/or died from cancer.

I don't want this post to be gloom-and-doom or dark in any way, but do want to acknowledge how un-normal our lives are and how we cannot shake the underlying uncertainty of living with cancer. I have heard from others who went through treatment for cancer that this is not that unusual. So many things can go wrong, and even on the best of days (like today), there is the shadow of doubt that can creep in. Now that I think about it, that is probably the honest truth for everyone, even under so-called "normal" circumstances. We all walk through that dark valley at some point or other. What makes a difference, even in the face of the uncertainty and the fear and the dread, is whether or not we walk it alone. And we don't.

Posted by Randall at 09:30 PM | Permalink