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September 01, 2005


10:15 PM Today has been a very full day for all of us. I went to campus (to turn in my paper from last semester--something about finishing pending business before you start new business, I guess) and Susan stayed home with Sophie. The food of the day has been pudding (so I hear). More of the same from Sophie, although it does seem that her disposition seems to be improving.

Today was a cavalcade of Scooby (all Scooby all the time). That, actually, seems to be a good thing. Before, Sophie would quickly tire of even television and go lay down or ask for something to eat. Sophie still seems really, really bloated, and this evening she complained about her feet hurting as she stood at the bathroom sink to brush her teeth. I'm really impatient with this, I know, but it's hard to see Sophie in this condition (although she clearly doesn't worry too much about it).

She does seem to be taking an interest in things like TV and reading books. Tonight at the dinner table she was a little more like her cheerful self, chatty and being silly. She also seems to be laughing more.

Because we were concerned about the weight gain, Susan called UNC and asked about Lasix (we had used it in the first round of chemo, I think, and were considering using it this round). The doctors basically said that it would be more trouble than it was worth and the steroids just needed to work out of her system. They said that we might be able to see some improvement by Sunday (if we can wait that long).

As I drove home today from school and noticed that one of the gas stations we frequent had closed (because of no fuel), I began to panic about getting Sophie to treatment next Tuesday if the gas shortage continues or gets worse. Susan is working from home tomorrow, which will help. Never thought I'd worry about not being able to take Sophie to chemotherapy!

Seriously, though, I am absolutely grief-stricken by what's happening in Louisiana (and Mississippi. and Alabama. and Florida). I spent three years in New Orleans as a student and to see what has happened and what is happening to that area is just heartbreaking. A handful of friends still live there and while they all seem to be alright, things will never the same for a long, long time. I read a story about the evacuation of Children's Hospital (where I volunteered as an undergraduate at Tulane), and my heart went out to the children and their families as they go through this ordeal. I can't imagine how we would handle relocating Sophie for treatment if such a disaster struck here.

September 02, 2005


8:00 PM: We've had a few more improvements today. Sophie usually wakes up to eat three times during the night. Last night, she woke up three times, but she only ate twice. It felt wonderful when she went right back to bed after going potty. She was pretty demanding today, but there were two of us to attend to her, so it was a little easier. Her new food for today is popcorn. She had a good nap today (Randall and I joined her, which was nice), and after we picked up Elisabeth from school, we all ran some errands together. Sophie asked to go home several times, but then she would perk up and we could continue. We were able to get both cars filled up with gas today, so we're in good shape to go to clinic (and get Randall to class in the other car) on Tuesday. That's a relief. Meanwhile, I'll work at home to save gas instead of commuting 70 miles each way three days a week. Gas prices here are ranging between $2.99 to $3.49 a gallon, and a handful of stations (like the Grocery Barn just up the road from us) have no gas at all.

Complaints and concerns:

  • She keeps saying her feet hurt. That's probably a side effect of the swelling, or possibly of the extra weight she's carrying.
  • Lots of hair is falling out in the back, and she just has a little patch of bangs left. Randall just gave her a bath and said unbelievable amounts fell out when he washed her hair. I don't know if we've mentioned it before, but the roots of her long hairs are really amazing. There are basically stripes at the base of each hair that seem to mark each phase of treatment.
  • We noticed today that when she leans up against something, there are "indentations" left in her skin. The doctor said that's edema--normal swelling from the steroids and nothing to worry about.
  • We are also noticing a fair amount of bruising, some in places that you wouldn't normally expect to see it. The doctors said that's definitely something to keep an eye on, because it's an indicator that her counts are dropping. Her counts may be too low for treatment on Tuesday, but then they may be so low, she would need a transfusion. yesterday, she had a fever of 100.5 a couple of times during the day. We were glad it never went above 101, because that would mean a hospital admission. We are really hoping she doesn't have an infection. We wouldn't be surprised, since Elisabeth seems to have caught some sort of upper respiratory thing (runny nose, sore throat), and Randall's starting to feel a touch of something too. The soybeans are in bloom, so it might just be allergies.

Signs that she's starting to feel better:

  • She played in Elisabeth's room this morning for a little while (instead of lying on the couch) and found some lip gloss. She was very excited about wearing "makeup".
  • She was jumping today (it felt like the whole house was shaking!).
  • She told knock-knock jokes on the way home from our errands and laughed really hard at all the jokes we were telling.
  • She's walking on her own a lot more (which might explain the sore feet), although sometimes she can't quite make it where she's trying to go (a certain distance or up a few steps at the back door) and has to crawl. Once she's crawling, she gets stuck and can't get up, so we have to help her (it's actually pretty pitiful, but we're taking it as a positive sign that she's trying to be more independent).
  • She's also sometimes coming to get us when she needs something instead of yelling at us from across the house.
  • Reading is still a favorite activity, as is watching Scooby (will she ever get tired of it???).

September 03, 2005


9:15 PM: Sophie is really starting to feel better. She was only up one time during the night (although we were both up with her for quite some time because she had an accident and we had to change the sheets). Her body is releasing so many fluids, she really can't go very long without having to urinate, and she had been sleeping from 8:30 to 3:00.

Randall was nice enough to let me sleep in this morning (until 10:00--what a luxury!). I woke up listening to the girls playing nicely (mostly) together in Sophie's room with their dolls. Sophie spent much of today playing, singing, or dancing, either with Elisabeth or by herself. She is often still quick to get angry about something if she doesn't get her way, but we're starting to see improvements.

Today, she was in a size 6 dress (and it's tight), but I do believe she's starting to "deflate". She doesn't feel as heavy when we pick her up, and her face looks a little smaller. She continues to lose hair. I've pretty much gotten past my feelings over that, superficial though they are.

We continue to feel great sadness and anxiety over the aftermath of Hurricane Katrina. Randall has arranged the whole church service tomorrow to remember and support those affected by the hurricane. I hope it will be a comfort to the congregation and will motivate them to do everything they can to help. This tragedy really puts things into perspective and makes us feel thankful for everything we have.

September 04, 2005

9/4/05 AM

8:15 AM: I'm reading the paper and finding myelf very irritated by the word "victim." I do crime research, and the word had never bothered me before, but one time someone called Sophie a "cancer victim" and it really rubbed me the wrong way. I felt like it implied negative things (like passivity or even death). I guess in the case of cancer, things like "cancer patient" or "cancer survivor" seem like euphemisms. I tend to stick with "she has cancer." I guess "cancer victim" seems to say to me that the cancer has her rather than the other way around. Anyhow, with all this media coverage of the hurricane, I see the word "victim" a lot, and it seems to me that "victim" best describes those who have lost their lives. I prefer to use more positive adjectives to describe the ones who made it. I know they have been "victimized" too, but somehow, I would think they would want a less passive word used to describe how they've fought and will continue to fight. I don't know if this makes any sense, but I felt compelled to share how that word has changed in meaning for me since Sophe's diagnosis, no matter what the dictionary says.

9/4/05 2:00 PM

2:00 PM: The home health care nurse was just here to do the blood draw for Sophie to see if her counts are high enough to start the second half of this phase of treatment. We changed her dressing and then got ready to draw blood. No blood. That happened last time the nurse came a month ago, and switching syringes did the trick. Not this time. She tried three different syringes and even tried flushing with saline (which went in, but nothing came out). Randall called the doctor, and they said it's probably a clot. Randall just left to take Sophie to the local ER, where they will inject the line with "TPA", which is a high-powered clot-buster of some sort. If that doesn't work, they will do an ancillary draw from her arm (I'm sure everyone in Dunn will hear her screaming). One concern if it's not a clot is that there may be a kink in the line. In fact, it seems that is what the doctor is suspecting, since that would explain why the saline and heparin go in but blood doesn't come out. I'm not sure what the next step is if that is the problem. Probably surgery to replace or straighten the line. But we won't worry about that until we know for sure what the problem is. It's a 20-minute drive to the hospital, and they should take her right back, since our doctor has called ahead (and she has cancer and her counts are probably low--we've never had to wait in the main waiting room with her). The TPA takes a half hour to take effect, so I hope we'll know more in an hour or so.

9/4/05 5:30 PM

5:30 PM: When 5:00 came and went and I hadn't heard from Randall (and was getting no answer on his cell phone), I packed a bag for the hospital just in case they had decided she should be admitted. I called him again and he answered, but the signal was too weak to talk. He called me back from a regular line to say the TPA worked and they were able to draw blood from her line. He had been waiting for quite some time for labwork to come back and was expecting it any minute. I'm very curious to hear the results of her blood test so we can find out whether she will be starting treatment on Tuesday or whether she needs a transfusion. He said we'll need to do a cap change (for the second time today). For some reason they decided to take the cap off at the ER, and so they will be sending her home with an empty syringe attached to the end of her line, because they don't have caps at the ER. Our sitter is still coming tonight, so Randall and I can go have a relaxing dinner once they get home.

By the way, Sophie woke up twice last night to go to the bathroom, but she didn't ask to eat once during the night. What a difference that made!

9/4/05 PM

10:00 PM Home again after date night (and a marathon shopping trip to Target and Harris Teeter). Needless to say, we spent more at Target than we did on dinner, but it had been a long time since we bought some staples, and we were running out.

Susan seems to have given everyone the information about our grand adventure at Betsy Johnson Medical Center Emergency Room, where no matter what is wrong with you, you are guaranteed to lose at least 4 hours of your life (we're lucky we got out when we did--while we were there, one couple up and left before they saw a doctor or got X-rays done).

Sophie's counts came back shortly before we left, and they looked pretty good. We're expecting a call from the doctor at UNC this evening or tomorrow to let us know how they look to the folks up there. Assuming they are strong, Sophie will go up to Chapel Hill for the second half of this round on Tuesday. Thankfully, no steroids, but a number of drugs that are new to us (and a spinal tap and, eventually, another PEG shot). This last week has been a bit of a breather for us (believe it or not), but the treatment continues . . .

September 05, 2005


8:00 PM: It's been a lovely day at home today. First of all, Sophie slept through the night without waking up for anything (or at least, not waking US up for anything). I don't think I've ever appreciated sleeping through the night as much. Her eating is also slowing down (although she did eat 3 packages of cheese grits for breakfast). No requests for pasta today. The girls watched some TV today, but they also spent a lot of time playing and pretending together, with very few arguments (or "sharing violations" as we like to call them). The best of today was playing outside in the yard tonight. It's really nice outside, and we kicked a ball, played on the swings, and I weeded our little side garden.

Sophie's hair is falling out so much, it's starting to irritate her (and us). Even her peach fuzz (the stuff that had grown back in from what fell out earlier in the treatment) is starting to fall out. She's in the bathtub now, and I plan to cut it fairly short when she gets out. I don't really have a plan, but I hope it will look okay. I can hear her in there complaining about the hairs that have fallen out in the bathtub and are sticking to her.

The doctor called today after analyzing the results of her blood test. Although he's not sure the hospital ran the tests correctly, he's pretty sure her counts are too low (.3 ANC) for treatment tomorrow, so we'll have a week off.

September 06, 2005


7:30 PM: Another night without Sophie waking up. How wonderful! She still has a ways to go physically. Her eating has slowed down, but she's still pretty puffy and bloated. I cut her hair very short last night (a little bob to the nape of her neck). But there's so little hair left, I don't think any haircut could look good (plus the swelling just makes her look so different). I took a few pictures just now and we'll transfer them to the computer later so we can get them online. She didn't really want to smile. She's still very irritated by all the hair that's falling out. Not much we can do about that without shaving it all off (which I don't think she would enjoy). I just keep scooping it off (like making a loose ponytail and grabbing anything that's hanging off the end) and using a lint roller to pull off what falls on her dress (size 5 today).

She and I had a good day at home while Randall and Elisabeth were at school. She watched a LOT of Scooby: from 9-12 and from 1-2:30. We need a nanny! She napped from 2:30 to 5:30, waking up just in time to pick up Elisabeth from school. The girls got a few things in the mail today (movies from a friend at work, an American Girl magazine, and some presents for Elisabeth's upcoming birthday--9/14). That made them happy (not that Elisabeth gets to see those presents yet!).

September 07, 2005


8:15 PM: From what I hear, today was a good day at home. I left at 6:30 and spent most of the day at work. Randall said it was a good day at home with Sophie. He got a few things done, and she was in a pretty good mood. They ran a few errands and had lunch at the Barn. She was up early this morning (around 6:15) and was actually up fairly late last night (didn't fall asleep until about 9:30), so she took a long nap today (about 3 and a half hours). Randall joined her for a little while.

After dinner, we went to the Sampson Nursery to walk again and had a great time. Their grandkids have a motorized toy jeep that Elisabeth drove the whole time--you should have seen the look on her face, she was so proud of herself! Sophie rode for a while and walked for a while. Sophie wore a little baseball cap for her outings today. Elisabeth looked at her this afternoon and said "She's bald!"--pretty close. The girls just had a bath, and we're ready for them to go to bed soon.

September 08, 2005


8:45 PM Susan stayed home with Sophie while Elisabeth and I went to school today. It sounds like they had a pretty good time. They ran some errands (dry cleaning and shopping) and had lunch at Cracker Barrel (always a favorite). Susan noticed today (and I noticed yesterday) that with Sophie's obvious hair loss, it seems as if people are paying special attention to her, commenting on how pretty she is and the like. It's really touching, I suppose. At least, Susan is positive about it, appreciating that people are being as sweet as they are and not staring or just ignoring Sophie altogether. As an introvert, I am not as excited about the extra attention, but, of course, Sophie just eats it up, so it's all good. Sophie has very, very little hair left, and what is left falls out in great handfuls. It's hard to imagine that she has enough hair to fall out, but we're still finding it on her clothes, on her pillow, and the like. Now that it's falling out, we'll all be relieved once it's all gone! Frankly, I'm thankful that Sophie's personality has mostly returned to normal (you should hear her laughing!).

September 09, 2005


9:30 PM: Today has been a good day. Sophie entertained herself for much of the day (mostly watching TV), and I was able to get a fair amount done as well. The greatest thing about today has been that Sophie has taken the initiative to look after herself a little bit. Sophie ate breakfast at the couch today (watching TV). Once she got settled, I went to take a shower and told her that if she needed something, she could either come get me or take care of it herself. As I'm getting out of the shower, I hear all of this clanking and clanging from the kitchen. Apparently, while I was in the shower, Sophie finished her breakfast, and she was putting all of her dishes away, folding up her TV tray and putting it where it belongs next to the refrigerator. It's so satisfying to see her trying (and doing a really good job) putting her things away!

The worst part about today was that I got a call from Elisabeth's school to pick her up early. She was complaining of a sore throat and was running a low-grade fever. Since we have no idea what Sophie's counts are right now, we really need to be careful about germs and the like, so this is not a welcome event. Elisabeth spent much of the evening "quarantined" in her room watching the portable DVD player (she even ate dinner in there). She definitely is not feeling well, but I'm glad this is happening on a Friday so she can rest and (hopefully) recover over the weekend. We'll work hard to wash our hands and keep the girls in separate rooms as much as possible. Elisabeth may not get the chance to go to a birthday party tomorrow, but if she's sick, she needs to stay home. Hopefully this is nothing serious.

September 10, 2005


10:00 PM Today has been both trying and productive. Trying because Elisabeth is really quite miserable (I can empathize because I'm a little under the weather myself). She has gone from being completely wiped out while watching TV or sleeping to being nearly hysterical over the slightest thing (being unable to blow her nose) to being nearly normal and insisting that she feels good enough to go to the birthday party today (right). Needless to say, she has kept us on our toes.

Today has been productive because Susan and I tackled cleaning out the girls' closets and dressers. Neither girl is about to go without clothes any time soon, which is really pretty amazing because we do not buy much in the way of clothes for them. Both closets were jam-packed with clothes (lots that the girls have outgrown), so we worked off and on all day separating clothes, boxing up the old stuff and re-hanging or re-folding the stuff that still fits. Just guessing, but I think we put away (or plan to give away, in Sophie's case) about half of the clothes in their closets.

Sophie has been happy-go-lucky most of the day today. Given how demanding Elisabeth has been, Sophie has been pretty content to entertain herself most of the time (or at least hanging out in the same room with Susan and me while we went through all the clothes). This evening, after Sophie had brushed her teeth and got ready for bed, she walked up to me and said, "Daddy, I'm bald!" Yes, indeed, she is bald. Technically, there is still some hair there, but it's not much.

Susan plans on staying home with both girls tomorrow while I go to church. Tomorrow afternoon we'll probably be taking Elisabeth to Urgent Care here in Dunn.

September 11, 2005


10:00 PM: Just another Manic Sunday (with apologies to the Bangles). I stayed home with the girls this morning while Randall did the church thing. There was a breakfast at church this morning, so he left pretty early. We enjoyed ourselves this morning, and Elisabeth has felt good at times and not so good. Shannon at church (who is a teacher at Elisabeth's school) told us that they have been seeing a lot of cases of strep. When we heard that, we decided we had better get Elisabeth to Urgent Care for a test. The only one in Dunn was closed today (they're usually open), so I drove her to Fayetteville. I wasn't surprised to hear the doctor say the test came back positive. So she's on an antibiotic (biaxin) and will stay home from school (and dance lessons) tomorrow. She should be able to go back to school on Tuesday. We also called Sophie's oncology team to tell the doctor on call what we had learned and to find out whether we needed to do anything special for Sophie, since her counts are so low right now. She said to just keep them separated from each other. They can be in the same room as long as they don't share cups, touch each other, or be near enough for Elisabeth to cough on Sophie. That's pretty much what we had been doing all weekend, so we hope Sophie will avoid getting it.

As requested, I finally got some pictures (from June through September, so there are lots) posted of Elisabeth and Sophie. (Click on their names to go to their photo archives). Sophie has lost nearly all of her hair, as you can see in this picture Randall took of us this afternoon. Randall and I were able to go to Bible Study (started a new one on The Lord's Prayer) and out to a quick dinner tonight. Thanks to Frankie from church for sitting.

September 12, 2005


11:00 PM Sorry it has taken so long to post, but it has been a full evening. Susan went to work early this morning, and both girls were home with me today. Elisabeth is clearly feeling better, as she had plenty of energy (and sass) most of the day today. I'm glad she's feeling better, although she has been a handful. Sophie is Sophie, and I spent a fair amount of the day getting the two of them to stop bickering over this, that, and the other. All things considered, I'm thankful that both girls feel well enough to play (and not watch TV), and playing always brings about "creative differences."

Home health care came today and that visit went very well. Sophie insisted that everything Amy (the nurse) did to Sophie, she needed to do to her puppy dog (a stuffed toy). It was very cute. I spoke later this afternoon with the oncology clinic at UNC, and Sophie's counts are still too low to continue this phase of the treatment. At this point in the game, we are no longer surprised. Sophie seems to take a long time to recover her immune system, and this phase of the treatment seems to be no different. Her counts are actually borderline this time, so I imagine that by this time next week, she'll be good to go.

September 13, 2005


8:30 PM: Elisabeth and Randall were at school today, so Sophie and I were on our own at home. We had a nice morning and ran some errands and had lunch out, followed by a nice afternoon nap. It continues to fascinate me to see how strangers respond to Sophie when they see her. She loves it when people pay attention to her. When we went to the local bakery (Sherry's) to order the cake (Strawberry Shortcake theme) for Elisabeth's birthday, the lady who helped us sent us home with two cupcakes for the girls. Sophie was thrilled and couldn't wait to surprise Elisabeth. Elisabeth's school is cancelled tomorrow because of Hurricane Ophelia (a little over-cautious if you ask me), so Eilsabeth and Sophie will be home with Randall tomorrow (both girls home twice in one week--how lucky can a guy get??).

The best news of the day is that we seem to be making some progress on getting some in-home day care. My friend Jamie at work has helped us research several options. One thing she suggested is that we look into having our home health care agency send an aide. She even looked up the tax laws for us. Sampson Home Health has found a person willing to do this for us on a half-time basis (mornings on the days she doesn't have treatment), and we're going to get the application filled out tomorrow. I hope we'll have someone coming within a few days. That will make a huge difference in our ability to work, and an aide will probably be more comfortable handling Sophie than a nanny or babysitter would.

In the fall, we can always tell what's being harvested around here by seeing what has fallen in our yard each day. Today, there were turkey feathers, cotton, and a tobacco leaf. We also see a lot of log and pig trucks drive by, but luckily, those things don't tend to fall into the yard. It's fun living out in the country.

September 14, 2005


8:30 PM Elisabeth had a wonderful birthday at home today. School was cancelled because of hurricane Ophelia. For the most part we got a pretty decent rain and some modest winds, but nothing worth getting frantic about. Elisabeth tore through her presents first thing in the morning and spent the rest of the day playing and having fun. The girls played together a lot, frequently running afoul of each other, which has been one of my greatest challenges today. It was particularly problematic because the phone was ringing off the hook between folks wishing Elisabeth a happy birthday and other folks wanting to know if Family Night was cancelled at church (it was, if only because enough people were likely to stay home no matter how nice it got this evening--it's sort of the least common denominator effect in a small congregation). We were all disappointed that we didn't have the time to visit with folks, but there will be other opportunities. But on the up-side, the Brocks brought over the casserole they made for the potluck, so dinner was not a problem!

Sophie seems to be doing very, very well. She's regained lots of energy and spunk (which means that we've had a couple of "talks" today and one pretty serious timeout). We're virtually certain that the chemo will resume next week, so we're enjoying this break while we've got it. I was telling someone yesterday that we used to not enjoy these "breaks" all that much because there was this desire to keep moving and keep the process going forward. I don't know about Susan, but I'm over that now. A break is great!

I'm completely used to Sophie being bald now. I know that it means lots of attention when we're out in public, but it looks more or less natural to me anymore. Besides, I like rubbing the top of her noggin! All around her head there is already a very fine "halo" of blond, almost white hair. It's pretty amazing to realize that as quickly as her old hair died and fell out, there is already the hint of new growth.

September 15, 2005


9:15 PM Susan and Sophie apparently had a good day at home together (I was on campus for most of the day). Usually we go out in the morning as a family and wait for Elisabeth's bus. Lately, Sophie has been riding her tricycle and this week, she has decided that she's not ready to go inside once the bus leaves. Fortunately, it has been pretty pleasant in the mornings this past week, so one of us (this morning it was Susan) stays outside with Sophie while she rides around. Just a little indicator about how much energy she has these days.

We have been noticing that Sophie has a really, really hard time with steps (there aren't many around here, but she gets up them like someone's grandmother--very gingerly). We'll mention that to the doctors on Tuesday (assuming, of course, that we resume treatment next week). One worrisome side effect of the chemotherapy drugs is the potential for the bones in the hip joint to basically deteriorate and die, causing long-term problems. Generally, the doctors check her gait at the clinic, but she never has to go up stairs.

One thing I neglected to post last night was that Elisabeth had a run-in with an electrical outlet the other night. Susan had bought a plug-in vaporizer because Elisabeth had been so congested with her head cold, and apparently, Elisabeth either pulled the plug out or was attempting to put it back in when it gave her a jolt. She was understandably quite shaken and pretty much refused to sleep in her room for the rest of the night (she went to sleep in our room and then moved to the couch). It was pretty traumatic for all of us, but she seems no worse for the wear. This is actually her second negative experience with electrical outlets, but that's another story.

Sophie enjoys going out on errands and doing stuff. I suspect she has grown accustomed to getting all kinds of attention--as if she needed it! I really, really do think that her hair has already started to grow in. It probably wouldn't show up in a picture, but it's there!

September 16, 2005


10:30 PM: I think we could get used to this home health aide thing. We got Elisabeth off to school this morning and were having breakfast when the aide arrived. Her name is Shatesha, and Sophie (who calls her "Tesha") really likes her. She was shy while we were finishing breakfast, but they were best friends before long. They played outside, they played inside, they laughed, and they cleaned Sophie's room! They did watch a bit of a Barbie DVD, but for the most part, they avoided TV. Needless to say, it was a very productive morning for us parents.

Shatesha left at 1:00, and we all laid down for a nap. I started to feel some irritation in my sinuses and didn't sleep long. As I was working, my throat started to feel very sore, and my temperature was 101. I decided to go to Urgent Care, just in case I had picked up Elisabeth's strep. The test was negative, and I probably have a virus. The doctor told me to gargle with hydrogen peroxide and take ibuprofin for fever and discomfort. Mostly, my nose is sore from constant blowing. This was the same Urgent Care where I took Sophie the day she was eventually diagnosed, and the staff was really happy to get an update and hear that she's doing well.

Elisabeth had a good day at school and is looking forward to her party tomorrow. She continues to get cards in the mail and birthday wishes in person and by phone, which makes her happy.

September 17, 2005


10:30 PM: What a day! It started out with a clean-up day at church, so Randall was out of here pretty early. Most of the churches around here have an annual "Homecoming" Sunday, where we invite friends and family to come join us for a special church service, followed by a potluck. So we were making sure the church looked its best. The rest of the day was filled with preparations for Elisabeth's party. Chuck E. Cheese on a Saturday afternoon. Oh my. It was a zoo. As Randall put it, it's like a mini casino (without the smoke, thankfully). But it's just as stimulating and overwhelming, and the kids go nuts over those silly tickets to buy trinkets that are worth far less than the money it took to buy the tokens to play the games to win the tickets. We had not made a reservation, because we don't like being on the main floor, but we were lucky to get three tables together. All her friends from church came (well, the girls anyhow--she didn't want to invite any boys), and Haley from her school came (her mother Laura posts comments here occasionally). We were there from 4:30 until 7:00. Ugh. I think most of the kids could have stayed all night. Sophie, in particular seemed to enjoy herself and have lots of energy. She didn't enjoy the games at all, but she loved seeing Chuck E. (had a sudden attack of shyness when he tried to shake her hand), and she had a good time dancing to the music. I'm glad she was doing well enough to go.

September 18, 2005


10:30 PM As usual, another busy, busy Sunday. Everyone was so happy to see Sophie at church--I had forgotten how long it had been since she's been there. The best part was going out to lunch afterwards, something else I had forgotten that we used to do. Honestly, so much of our lives has been just getting by that we have begun to take for granted that Sophie's health and treatment will constantly impact our day-to-day activities. Today was a little glimpse, perhaps, of what is in store for us in the future.

Elisabeth spent the better part of the day playing with all of her new presents. Sophie and Susan took a brief nap this afternoon (Susan is still not feeling well). I had a meeting this afternoon at church, Bible Study this evening, and Susan and I went out to eat afterwards (discovered a new restaurant in Fayetteville that we will definitely be returning to). Patti from church came and sat with the girls during all of that. She seemed to enjoy herself and the three of them made cookies--babysitting and free chocolate chip cookies (talk about spoiling the preacher!).

As frantic as today has been, this week will be even more so. Home health nurse comes tomorrow to do bloodwork and I'm 90% certain Sophie's counts will be high enough to resume treatment on Tuesday. Of course, that means a trip to Chapel Hill on Tuesday. Susan has a two-day meeting Wednesday and Thursday, so I'll be home alone with the girls on Wednesday evening. I've got a fair amount of reading and other assignments to take care of this week, and church work is starting to pile up as well. Through all of that, my primary focus is on Sophie's treatment this week. Although this break has been particularly wonderful, if we're going to have to resume the treatment (as if we have a choice), I'm ready to resume it sooner rather than later.

Thanks to everyone for your support and prayers and wonderful comments! It's such a blessing to know that folks care about our family and are keeping up with our life together through all of this.

September 19, 2005


10:00 PM Today has been a very full day (as expected). Susan left early this morning for work but felt miserable most of the day. In fact, her sore throat got so bad, she ended up going to the doctor again this afternoon (still no strep, but the doctor suspected a sinus infection). On the home front, the home health care nurse came today to draw blood and the results were really good. Sophie's counts are high enough to continue this phase of the treatment. We have three more weeks in this phase, starting tomorrow with a spinal tap and a particularly nasty drug called cyclophosphamide. The problem with this particular drug is that it can cause crystals to form in the urine (I think), which can damage the bladder, so the plan is to hydrate Sophie with IV fluids for several hours prior to giving her the chemo and chasing the chemo with several more hours of fluids. Since Susan is not feeling terribly well (and probably does not need to be exposing cancer patients to whatever virus and/or other germs she is carrying right now), I'll skip classes tomorrow and take Sophie to UNC. That, actually, was a very easy decision to make.

Elisabeth had school today (and piano lessons at school--she promises she's going to practice this week). After school, she had dance classes in town. On the way home, she fell asleep in the car. I can sympathize! She has a field trip on Wednesday down to Carolina Beach and that whole area. It looks like it'll be lots of fun.

It was great having Shatesha here this morning. I have a laundry list of phone calls and errands to run for the church, not to mention several hundred pages of reading to do for coursework. I got some of it done, thanks in large part to the fact that I didn't have to tend to every need of Sophie all day.

If I may brag, the women's group at our church (the UMW) set a goal of assembling 10 health kits for the hurricane Katrina relief effort. I delivered over 40 health kits today, and while I was gone, somebody brought some more stuff. Yesterday at a committee meeting, somebody asked me if there is anything else that we can be collecting for people in the Gulf coast. It's moments like that that make me appreciate being involved in the life of a church!

September 20, 2005


9:15 PM Today's clinic visit went very well. Sophie and I left around 5:50 this morning and got to the clinic around 7:20. I was surprised how heavy traffic was, but it moved along pretty smoothly. Sophie was #2 in the sedation order, so she got checked in, checked out, and knocked out all in a matter of an hour or so. She was very agitated going into the sedation room (she later called it the "scary room"), but the anesthesia works really, really quickly and before long she was out. She was still agitated as she was waking up, and it took a long time for her to come around. Of course, it was the prospect of cheese grits that finally snapped her out of her funk. The boy who came out of sedation after her had a much harder time. I felt so bad for him and his family, and we have been there (the time when Sophie had some bad reaction to the sedation).

I met a little boy (Ryan) and his dad today at the clinic. Ryan was diagnosed in July, and it seems as if he and his family are still reeling from the diagnosis and the initial phases of the treatment. It was pretty amazing to talk through those first few weeks with someone who is going through all of it right now. As a family, we have all come a long, long way from February, and I never would have imagined being in the position of encouraging another parent that everything is likely to get better.

Susan rested a fair amount today (although she admits that she worked some--she can't just put that sort of thing down). Elisabeth had a great day at school and she is beside herself with excitement about the field trip tomorrow. It'll be another early morning in our house (Elisabeth has to be at school by 7am). Susan will spend the night in the Triangle tomorrow evening so that she can attend her two-day meeting.

Given all the medicine pumped into Sophie today (Zofran for nausea, Ara-C, cyclophosphamide, methotrexate in her spinal fluid, not to mention the usual antiobiotics and the anesthesia, thioguanine this evening), she was in good spirits. She was giggling and making fun all night. When Sophie and I were playing with some of the toys at the clinic, I discovered that Sophie can spell her own name (well, I coached her a little bit, but she got the hang of it pretty quickly). Susan was especially impressed when I said, "Sophie, how do you spell your name?" and Sophie piped up, "S-O-P-H-I-E!" Now that she's feeling strong again, she seems to be really engaged in learning letters and numbers and the like. It's great to watch her progress.

September 21, 2005


10:20 PM Today is the eight-month anniversary of Sophie's diagnosis. Just out of curiosity, I went through all of the claims against our insurance company for Sophie's treatments to see how much it has cost to treat Sophie these past eight months. Mind you, this dollar amount does not consider pharmacy co-pays, travel to and from the hospital and/or the clinic, or the lost earnings because of Susan taking Family Medical Leave (and whatever other incidentals that we have come across). The grand total (and still counting) is $173,670.35. Basically that amounts to over $700 a day. We are incredibly, incredibly thankful for the terrific insurance coverage that we have, but can you possibly imagine how families manage without the kind of coverage that we have, or, worse yet, without any coverage at all? Granted, you cannot put a price on having a healthy, thriving child, but I fear for those who have to make tough decisions that we have never had to make in this process. There is no wonder that an experience like this can devastate families financially for years and years and years.

Sophie seems to be doing well today in spite of the long day and resumption of treatment yesterday. Her appetite seems a little bit suppressed, which we'll need to watch since she is prone to low blood sugar. There has been no nausea today at all, nor has she seemed especially tired, although she went to bed pretty quickly tonight. I feel very optimistic about these next three weeks. I hope I'm not being overly optimistic. Granted, if we hit a bump in the road, we'll ride it out like all others.

Elisabeth had a terrific time on her field trip. They went crabbing and digging for clams (among other things) and spent time at the aquarium down at Carolina Beach. Elisabeth said the best part was catching crabs--she and her partner (they had to work in teams) caught the biggest one!

September 22, 2005


7:30 PM: It's good to be home! Sophie was so excited to see me when I arrived just after lunch. She's doing really well with all the chemo. She hasn't had any nausea or vomiting and seems to have lots of energy. As Randall mentioned, her appetite seems smaller than normal, but maybe it is normal and we had just gotten used to the huge amounts of food she was eating when she was on steroids.

I'm starting to feel better, although I'm still pretty congested and tired, and my throat is still bothering me a little. I won't plan to drive in tomorrow, and I probably won't work a full 8 hours.

We have big plans this weekend. A local family whose daughter Madison also has leukemia is organizing a benefit to raise money for Road to Life--an organization that supports childhood cancer families at Duke. Madison just turned five and has one year of maintenance treatment left. The event includes a 100-mile motorcycle ride, an auction, BBQ plates, and lots of activities for children, including pony rides, games, and face painting. We would encourage anyone living in this area to come support the event. It starts in the morning at 9:00 and runs most of the day (we'll probably go mid-afternoon). There will be a ceremony at 4:00 or so at which they will recognize local children (including Sophie) who have cancer. There will be ten families with living children and one family who lost a child. The event is being held at Stillwater Lodge--3636 Holly Grove Rd.--in Dunn near the intersection of NC 242 and NC 55.

September 23, 2005


7:30 PM: Today almost felt like a Saturday. It was pretty nice! Shatesha came and took care of Sophie (and did a little cleaning, which we really appreciate and feel slightly guilty about, but it is part of the agreement we have with home health, so we shouldn't feel guilty). Randall and I were able to go out to lunch together, which we really enjoyed and hadn't been able to do in a long time. Sophie and I both took a long nap this afternoon. We're having a guest preacher at church this Sunday, so Randall hasn't had to work on a sermon this week. He's doing really well keeping up with his schoolwork, and it's been a pretty low-stress week (even with me gone for one night). That's been very nice.

I gave Sophie her last chemo injection (Cytarabine) for the week earlier tonight. She's taking some chemo (Thioguanine) by mouth every day for two weeks and will do the chemo injections again next week. Normally we crush up the oral medications and give them to her with a spoonful of yogurt, but Thioguanine can't be taken with dairy. Intead of taking it with something like applesauce or peanut butter, she prefers to just chew it up. She never complains about it and says it doesn't taste bad. We go to the clinic again on Tuesday for a spinal tap with full sedation.

We're really looking forward to tomorrow's Road to Life event (see yesterday's entry for details) and to homecoming on Sunday (service at 11:00 followed by a potluck lunch--Wesley Chapel UMC on Highway 13).

September 24, 2005


8:20 PM Today has been a very full day--especially for a Saturday! It started out innocently enough (another quiet, lazy Saturday), but after lunch, we made our way to the Road to Life benefit. There were a great many people there, which was great since this cause is close to our hearts. Besides Sophie, there were ten other kids who either currently have cancer or are cancer survivors. One mother, whose son passed away after a relapse, was also there and told her story. The heat was pretty hard to bear, though, and I was worried about Sophie being out in the sun for too long. Of course, Elisabeth didn't mind at all, especially when her friend Caroline from church showed up. Sophie seemed to have a good time (at least, she said she had a good time), and she and Madison enjoyed spending some time together. Janice--Elisabeth's dance teacher--was there as well.

After the recognition ceremony (Sophie got a teddy bear and a medal), we stuck around to get pictures made and to allow Elisabeth some time to play and get her face painted. Before too long, we were all worn out, so we made our way home. As we were pulling into the driveway, Sophie asked, "Where's my blankie?" We had left it there. So, I stayed home with the girls while Susan went back to the benefit and recovered Sophie's blanket. She had planned to go do some grocery shopping anyway, but making a side trip to get the blanket was not in the plans.

It has been an overwhelming afternoon. Hearing the woman's story about her son was really hard, especially since he was out of treatment and died of complications following a relapse. I have mentioned to some of you how I feel that although Sophie is doing reasonably well, there is this sense that our lives are shadowed by the leukemia and more generally, by death. We are constantly on alert for the next shoe to drop, the next complication, the next "bump in the road." Of course, when they come, we handle them (and Sophie handles them), but it is hard living constantly on the edge. It isn't a matter of worrying and fretting (although we do our fair share of that--me in particular), but it is a matter of being unable to relax most of the time. There is an underlying stress and tension in our lives that wasn't here nine months ago, and I doubt if it will ever go away.

September 25, 2005


9:30 PM: It was a day full of church! I guess that's not surprising for a Sunday in a preacher's household. We actaully had a pretty low-key morning before we headed to church. Everyone slept a little later than we normally do. Our church nromally has worship at 9:30 and Sunday school at 10:45, but we switched things around this morning for Homecoming Sunday. Several of us practiced and sang a hymn for the special music, and everyone seemed to enjoy it. (I hope we'll do it again soon--I miss singing in a choir). Randall led most of the worship service, and we had a guest preacher who did a combination of singing and speaking. All of this was followed by a covered dish lunch. We headed home for a short nap (I'm not sure the girls slept at all, but I did). Then there was a tupperware party in the fellowship hall at church that Elisabeth and I went to. After that, we were home for just a short time before we headed back for Bible study (we had a sitter). Randall and I had a nice dinner out and enjoyed the conversation on the way to and back from Fayetteville. The girls were both wide awake when we got home at 9:20 (on a school night!), but they're both quiet now.

I was a little worried about Sophie this morning when she fell asleep during the worship service. It's rare for her to nap in the morning, and she has just not been eating very much, so I was concerned that her blood sugar might have dropped. But just around lunch time, she woke up and was in a very perky mood. We've had a very nice weekend. It actually felt pretty normal since Randall didn't have to spend Saturday working on a sermon. That break was very nice, but I know he's looking forward to getting back to preaching this week. It's a part of his job that he really enjoys preparing for and carrying out.

September 26, 2005


8:30 PM: Just when we think things are going smoothly with Sophie she has a little setback. Last night, around 3:30, she crawled into bed with us (and Randall went to her bed, since it was a little crowded). Sophie seemed uncomfortable and was gruntingm exhaling, and squirming a lot. She said she needed to go to the bathroom, so I took her, and not long after that, she said she felt like she was about to be sick. I asked her if she was going to be sick, and she insisted that she had said she was "about" to be sick. I asked her if her tummy was upset and she said yes, so I gave her some zofran. After 20 more minutes of squirming, she threw up. Luckily, I had grabbed a little bowl for her to throw up in, so we didn't have to do much cleaning up. She very sweetly asked Randall to get us a paper towel so I could wipe her mouth, and then she slept soundly until 8:00. Because she was taking just a half pill of thioguanine on the weekends, we had skipped the dose of zofran, thinking the smaller amount of chemo wouldn't cause any nausea. This is a new medicine for us, so now we know and will be sure to precede every dose of thioguanine with zofran. Once again, thank goodness for insurance. Each bottle of zofran costs over $100 (our copay is $20), and there are 10 doses in a bottle.

Both girls have been extra crabby today. Sophie was really bossy with Shatesha, and after she woke up from her nap today, she cried for nearly a half hour and never did really explain why she was upset. Elisabeth seems especially unhapy and unsettled. She said she had a hard day at school today, and after Randall had driven her all the way to dance class (20 minutes each way), she cried nonstop until he finally brought her home. We want her to stick with her commitments, but we don't want to force her to dance if she's not physically feeling well (and with the way she was acting, it was hard to tell if it was emotional or physical). She has also been chewing and sucking on things a lot (objects, her clothes, her thumb), and we worry that she may be feeling anxiety over Sophie that she can't express. She says she's just chewing on things because she's working on a loose tooth. Maybe it's a little bit of both.

September 27, 2005


7:15 PM: I don't know why I insist on going to bed at our normal time (after 11:00) when I know I have to get up extra early to take Sophie to clinic. With just 5 hours of sleep behind me, I got ready to take Sophie to clinic. I was all ready to go and had everything packed up. I took several trips to the car to take the backpack with her things in it, her blanket, plenty of coffee, etc. It was only when I got to the parking lot in Chapel Hill that I realized I had forgotten my purse. The consequences of this oversight weren't immediately obvious, as the first thought that came to my mind was that I was lucky I didn't get pulled over on the way in and would have to be careful not to speed on the way home. As we approached the check-in desk, I realized I didn't have the hospital and insurance cards they always require we show every time we come for treatment. They let us check in without them. I didn't have my phone, and we were supposed to be meeting Randall for lunch. They let me use the phone to call Randall several times (long distance). We finished up early (9:15) and decided to just come on home instead of meeting Randall. I didn't have any money to pay for parking, but the attendant waived the fee. I drove very carefully and reasonably all the way home (I like to think I always drive carefully and reasonably, but I was very conscious of it!).

Sophie had her normal agitated reaction to the prospect of being in the procedure room. She just gets upset every time since they tried to do the waking sedation months ago. We immediately pulled her out and they gave her something to calm her down (versed, maybe?) before using the full sedation. She was a loopy little kid when we took her back in the room, but she still had the energy to fuss before they knocked her out. The doctor said the spinal tap went well, and when she came out to the recovery room, it took her a long time to wake up (longer than I've ever seen it take her). They like to have only one sleeping child in the room at a time, so they usually force us to wake her up as the next child is coming in, but the girl who came in after Sophie was wide awake when she came in, so she got to snooze a little longer. Once she was awake, they gave her a squirt of Cytarabine and we were on our way.

Since we got out of there so early and her counts are still at a reasonable level, we decided to go visit Ms. Lottie (her former daycare provider when we lived in Durham). They were so happy to see each other. All of the kids who were there when Sophie was have graduated, but she had a good time playing with the ones who were over 18 months. Sophie was unhappy about coming home but was happy to watch a video on the way. She had a very short nap, so I'm hoping for an early bed time tonight.

September 28, 2005


9:30 PM: I learned my lesson from the night before and went to bed at 9:00 last nght. Even so, when the alarm went off at 5:15, I still felt like a few more hours would have done me good. Regardless, I had a productive, full day at work today. Randall had a really good day too and feels like he's starting to stay on top of things instead of always playing catch-up.

It sounds like both girls had a good day, and it was a happy reunion when I arrived after a long drive. The oddest thing for me is that while I was gone today, I had somehow lost the mental image of her bald head, so I was kind of surprised to see her in her beautiful smocked dress with no hair. Weird. Sophie decided to start giggling differently today, so she now has a "fake" giggle that is impossible to describe in words but is really cute to listen to. Funny Sophie story: we were driving the other day, and Sophie said, "There's a cow. There's another. There's two nothers!"

Things are going well with Sophie's medications tihs week. We're giving her zofran for nausea every day, and she doesn't mind taking her medicines. It's still very odd and powerful for me to be injecting chemo into my own child. This stuff is so dangerous we have to wear protective clothing to administer it, dispose of the syringe in a special box, and we have a chemo "spill kit" an hand in case the stuff leaks out. And we're putting this into our child. And she happily sits still, chatting away about the pretty blue gloves. It's a big deal and no big deal all at the same time.

September 29, 2005


10:30 PM Two funny Sophie stories that we have neglected to recount these last couple of days:

1) Yesterday, Sophie was playing with a doll that our friend Mary Gayle gave to Sophie a while back. She is dressed in red, white, and blue stars and stripes, and Elisabeth named her "Liberty." Well, Sophie has given her a new name. Now her name is LuLu. LuLu Chemia. I never in a million years thought that leukemia would be a laughing matter, but from the mouth of our three-year-old, there you go.

2) Also yesterday, we were sitting down to a lovely dinner of leftovers. Sophie asked for Clifford soup (surprise!) and since everything else was already prepared, we sat down for dinner while the soup cooked. We said grace and then Sophie asked, "Where's my soup?" "It's cooking," I answered. "Where is it cooking?" Now, in my defense, Sophie has been the queen of questions these last few days--why is the sky blue? why are you doing that? where are you going? You get the picture. Thinking this was another 3-year old nuisance question, I said, "It's cooking in the kitchen, on the stove. Where did you think it was cooking? In the toilet?" "No," came the response, "I thought it was cooking in the microwave." Touche'

Sophie and Susan had a good day at home today. We are really beginning to appreciate having someone around in the mornings to help out. Both Susan and I are able to get more things done than we have been. Sophie's energy seems to be holding steady, although I continue to worry about her appetite. She barely picked at dinner tonight. I just wish we could find something that would interest her in food.

On a more serious note, it's confession time. Dealing with all of this has been hard. When we were in crisis mode in the spring, it was surprisingly easy to "let go" and rest in the arms of grace that we needed. As Sophie's treatment progressed and our lives returned to somewhat normal (a "new normal" at least), I fell into the "normal" illusion that I am capable of handling whatever will come, that I am self-sufficient enough, that I am smart enough, confident enough, strong enough to get done what needs to get done.

That has been a lie, and I have paid the price for committing myself to that lie. This week as I was running late to class to turn in a paper that was not my best effort on an assignment that I genuinely cared a great deal about, I realized, I'm not at 100%. At best, I'm at 75%. Everything I do, whether it is parenting, or pastoring, or being a husband, or being a student, or being a son, or being a brother, or being a child of God, or simply being a human being, has suffered in some way because I have a child who is being treated for cancer. In subtle and subversive ways, ways often too small to notice, every aspect of my life has been compromised and I have been in denial.

Yes, Sophie's treatment has been going well. Yes, her prognosis is good. Yes, we are handling everything as best we can.

But, yes, I have failed to acknowledge that a lot of my time is spent second-guessing every decision I make. Yes, I have ignored the warning signs of forgetfulness and depression and anger and general malaise that all stem from the trauma we have experienced this year. Yes, I worry about my relationship with the people I love, with my wife, with my daughters, with my sister and my parents, with my friends, and with this wonderful community that has reached out so lovingly to us all. I have been paralyzed by something beyond my control. I have neglected the relationships that would have helped me confront the lie that I am managing this all very well, thank you.

In these last two days, I have, as the parable says, "come to myself." I have come to my senses and realized that I have slowly wandered away to some far away country, away from the place I need to be, emotionally cut off from the people whose love for me and care for me will help me understand who I am and who I am called to be. What has been so shocking these past few days has been to realize just how far away I have managed to wander, without ever intending to wander at all. It's as if moment by moment, day by day, I have slipped off somewhere. It's actually somewhat frightening. We could never have hoped for Sophie's treatments to be going as well as they are, but you know what, having a child with cancer is not something I would ever wish on anyone. Even when the outlook is positive, it is not as positive as the outlook would be if there were no such thing as leukemia, and that is the reality that we live with. It's not pretty.

I'm thankful that for whatever reason, in these last couple of days, I have indeed "come to myself." I know that some friends have noticed that something has been amiss, and I know that some of you have prayed for me in particular. Thank you. Please continue to pray for me and for our whole family. We need your support. We need you to remind us that we are not alone in this and that we are not going crazy when we act like we're crazy. We need you to reel us back in when we get in over our heads or when we wander off. We need for you to help us realize that childhood cancer can never be something you get used to, because we haven't managed to get used to it yet (although, Lord knows, we've tried). But most of all, we need you to love us and keep us in your thoughts and prayers, even in the midst of these days when things seem to be going well.

September 30, 2005


6:30 PM So many people have added comments and phoned and expressed support. Thank you. I guess I worry a little about how much of my feelings I should share in this format, but to make a sort of breakthrough or to have the sort of realization that I had this week was something that needed to be public. All the time, people ask, "How are you doing?" or "How's the family?" or "How is Sophie doing?" Oftentimes, the answer is "Fine." And that's telling the truth. I am fine. We are fine. Sophie is fine. But "fine" under these circumstances is not the same as "fine" under other circumstances, never could be.

As I typed last night and expressed my frustration at being "at best" 75% in all that I do, I was wondering, "when have I ever been at 100%?" If I have ever been at 100%, what room would there have been for all the people whose support and love and encouragement make any of what I do even possible? How foolish of me to think that 100% was a realistic goal for my life. In retrospect, 75% was probably an overly optimistic figure. 75% would be something to aspire to, perhaps, still leaving plenty of room for family, for God, for whatever. Maybe from now on I'll remember that (maybe) and be content when I'm "only" at 50% (knowing that in love and by the grace of God, it will be enough).

Sophie had a great day today. Her energy level continues to remain high, and she continues to barely pick at her food. Elisabeth had a good day at school today, and from what I hear, Susan had a good day at work. This is our normal life, going about normal things, work, school, church, play. Another day in the life.