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2:15 PM: Sophie woke up from her second nap happy and hungry. She's been able to keep down everything I've given her, and she's drinking a fair amount of water (and a little bit of juice). She's running a little bit of a temperature (99.3), but it has to be over 101 (or over 100 for longer than an hour) before we have to call UNC. She said she had a headache a few minutes ago. We'll keep an eye on that. I didn't even know she knew the word "headache!"
12:30 PM: Sophie has had two more episodes of vomiting this morning (apparently the Zofran isn't fully taking care of it). We called the doctor at UNC, and he said vomiting in itself isn't worrisome, but if she runs a fever we'd need to bring in for sure. Also, if she can't keep anything down, we have to worry about dehydration, so we have to watch that during the day (if she gets dehydrated, we would also need to bring her in). She last vomited at 11:00, and she's been napping for just over an hour. She had a few sips of apple juice before she fell asleep, and has kept that down. My mom is due to visit tonight, and we are looking forward to having her here.
8:30 AM: Sophie woke up in a great mood this morning at about 7:00. She was watching TV, and a little before 8:00, she wanted me to hold her. At 8:15, she got pretty agitated and said her tummy hurt. Next thing we knew, she was vomiting again. She hadn't had anything to eat or drink yet, so there wasn't much coming up. We gave her some Zofran and are hoping that will help. She's asked to go back to bed just now. Poor thing!
9:00 PM (Randall posting): Susan just called and said they were on their way home. She was planning on stopping to pick up some fast food for dinner. The doctors found nothing terribly worrisome on the CT scan (no sign of stroke or bleeding or swelling), although they did find a "spot" on Sophie's brain that they did not identify as anything problematic, probably a cyst of some sort. We are to watch Sophie closely over the next few days, making sure there are no "repeat performances" and we are to check in with the Pediatric Oncologist on call at UNC tomorrow.
Thanks to all of you for your comments and, of course, for your prayers. Although we have had a really, really good run these last few weeks with Sophie's health, the reality is that we will continue to slowly work our way through this treatment and its side effects and we will continue to need the support of many, many people and their prayers. Thank you!
7:00 PM (Randall posting): Susan called and said that she was still waiting for Sophie to get a CT scan. The doctors will be looking for any swelling (of the brain, I guess) or bleeding, either of which can cause nausea and passing out. This is a potential side effect of the chemotherapy, although since Sophie is on such a new protocol, they seem to not know exactly what to expect and seem to be erring on the side of caution (the doctors told Susan that he thought it unlikely that they will find something given Sophie's track record with these drugs and her current phase of treatment). Looks like it will be another long and anxious night!
5:27 PM (Randall posting): We spent much of the day in the ER at Betsy Johnson here in Dunn. Sophie was mostly fine, although she did throw up again at the hospital, probably while Susan was typing the earlier entry! She took a nap after that and they administered some more Zofran (anti-nausea) directly in her IV. She also received a quick dose of fluids.
We've discovered that emergency rooms usually mean a whole lot of waiting around and Betsy Johnson did not disappoint. It turns out we were waiting because UNC wanted to send down their own EMT crew, so we had to wait for the crew to make the 1 1/2 hour trip down from Chapel Hill. Once they arrived, things got to moving pretty quickly and they left for UNC around 3:15 this afternoon.
Although Sophie seemed fine, it was very hard to see her loaded up on a gurney and carted away in an ambulance with the lights flashing (no siren). Susan left before the EMTs so Sophie wouldn't be without a parent for long in the emergency room. At this point, we have no news from UNC, and honestly it's hard to know what to expect. Sophie seems fine, and all the blood work and tests they ran today in the ER were unremarkable.
Elisabeth is back home with me (she was not happy about that, to tell the truth), but we will stay here and hold down the fort. Best case scenario is that UNC runs tests on Sophie and sends her back home later tonight.
11:30 AM: Quick update. Sophie has been vomiting this morning, and she lost consciousness after the second time. I called the doctor, and they said to take her to the local ER. Randall is there with her now (I came home to pack an overnight bag, just in case). They are running some blood tests and plan to send her to Chapel Hill by ambulance, just in case there's a problem on the way there. They will do some brain scans--one of the rare side effects of the methotrexate she took yesterday is seizures. They suspect she'll be coming home tonight, but we want to be prepared to stay just in case. Elisabeth is staying with friends from the church.
2:35 PM (Randall posting): Sophie is napping (I think) after a pretty uneventful trip to the clinic today. Elisabeth went to work with Susan and I took Sophie to the clinic (my first visit in a while), so we all had an early morning (we were on the road by 6:45 at least). Sedations were running late again at the clinic, but Sophie was #4 on the list this morning, thanks to our early start. The blood count from this morning was good--no transfusion today. In fact, her platelet count was up, which explains why the bruising seemed to be going away. Sophie is definitely neutropenic now, so we will need to take extra precautions with her immune system. Fortunately, Elisabeth is home from school this week, so we can all get into the habit of practicing good hygiene such as washing hands and so forth. The doctors used the same sedative from last week (that Sophie reacted badly to), but there were no fireworks today. In fact, it took her quite a while to wake up while the two kids after her (both boys) were waking up as they were being carried in. Once she woke up and had some cheese grits and orange juice, we were ready for the chemo in her IV (vincristine) and we were on our way. Sophie slept the whole way home and has been resting on the couch since we got home. She is stirring now, so I'll go tend to her. Take care!
9:15 PM: Sophie was a pretty happy kid today. She was fairly clingy, but it was so sweet to hear her ask me to sit with her or watch her dance. It's so hard to work at home, when I'd rather be holding her and playing with her. Elisabeth went to Duke with Randall today and joined him in class. She did well, and she is looking forward to coming to work with me tomorrow while Randall and Sophie go to clinic. After dinner tonight, we changed the cap on Sophie's catheter, flushed the line, and changed her dressing. We only have to change the dressing once a week, but as always, it was pretty traumatic for her. She spent the next hour scratching at the new bandage and saying it hurt. Partly, I think she was just tired, and anything would have irritated her at that point.
To clarify a comment Randall made yesterday about being midway through this phase of the protocol, it might be helpful to review her protocol. The first phase is called "induction" and lasts 28 days. The phase she is in now is called "consolidation" and lasts 56 days (two back-to-back 28-day cycles). It involves weekly clinic visits (we will be at day 21 tomorrow). The third phase will be "interim maintenance"--it involves clinic visits every 10 days (alternating Tuesdays and Fridays) and lasts 48 days. The fourth phase is "delayed intensification"--it involves mostly weekly clinic visits (with some weeks off) and lasts 56 days. The fifth phase is called "maintenance"--it involves monthly clinic visits and lasts for two years from the start of the interim maintenance phase. Sophie will take a short break at the end of each phase to allow her blood counts to recover before proceeding to the next phase. Assuming that her first break between phases (about 2 weeks) was typical, she should be starting interim maintenance in the middle of May. That will mean she could be done with all the chemo in mid-May 2007.
3:30 PM (Randall posting): I went off to Sunrise Service early this morning while Susan and the girls were still sleeping. Susan had quite a time getting everyone rounded up and ready to go to Easter Service at the regular time. Sophie has been increasingly cranky and crabby and just unwilling to do pretty much anything we've asked of her. She seemed especially tired and pale during the service so Susan drove Sophie off to Chapel Hill after church while Elisabeth and I stayed at home. We were mostly concerned that she would be in need of a transfusion (platelet and/or red blood cell), but after running her bloodwork at the hospital, the doctors are sending Sophie back home. Her counts are low, but not low enough to require a transfusion (in fact, her ANC was not yet low enough for her to be classified as neutropenic, meaning her immune system has not yet become a worry). She will quite likely need to be transfused on Tuesday when we go to the clinic for her next chemo treatment (spinal tap, intrathecal methotrexate and vincristine). This week will mark the mid-point of this phase of the protocol. It's hard to believe we've come this far already.
9:00 PM: It's been a pretty good day. We spent the morning piddling around. The girls and I headed out to a drive-through and brought lunch home to eat with Randall. We got Sophie down for an early nap so she could get plenty of sleep before today's Easter Egg Hunt at the home of one our church members. The kids all had a great time, but Sophie was pretty wiped out. She said she didn't feel well as she was finishing her snack after the hunt. She perked up once we got home, and the girls and I played outside while Randall finished up his sermons for tomorrow (two services). We went to Cracker Barrel for dinner and planned to do a bit of grocery shopping afterwards, but we decided it was too late and Sophie was tired, so we came home. She's definitely getting more bruises, still mostly along bony areas, so it's probably okay, but I think we'll give the doctors a call tomorrow. She might need a platelet transfusion before Tuesday when we're up again for her next treatment.
7:43 PM (Randall posting): We all had a pretty good day today. Susan left early this morning for work and made record time thanks to little or no traffic. I'm sure that she is happy to be getting in some hours at work for a change. Elisabeth was home for Good Friday, so the girls watched a new Dora video that came in the mail yesterday (thanks to Heather and Steve). After that, Scooby Doo was on TV, so the girls watched that (Scooby Doo and the Loch Ness Monster). During our TV-fest, the UPS man came with two big packages and another, smaller one (Elisabeth spotted him on the road and ran yelling through the house, "The mail is here!"). The delivery was several things that we had ordered from American Girl (the girls had received a gift certificate from our friends Mark and Julie in Albuquerque). That took care of the rest of the morning. For lunch we ate at Cracker Barrel. I was feeling especially brave. After that the three of us went shopping for a few things. Sophie finally got to meet the pharmacist who has been working with us since Sophie's diagnosis. She continues to spread joy in lots of places! Then, when it felt like we might never get home, we did, and we all took a nap. This evening, Ms Dawn came to sit with the girls while Susan and I went to church for our Good Friday service. We just got home and popped the girls in the tub.
Healthwise, both girls seem to be doing fine. Elisabeth does not like wearing her splint or her boot, but I keep reminding her that sometimes there are consequences for making bad choices, and we leave things at that. Sophie is starting to bruise a little bit on her knees and shins (probably from dropping platelet count) and she seems to be increasingly tired. I'm certain that her counts will reflect all of this come Tuesday. Her hair is noticeably thin now. She is still the same generous, loving girl, though.
9:30 PM: For those of you who are wondering how Elisabeth's friend Haley is doing, Haley's mom Laura posted a nice comment tonight with an update on Haley's condition (she's doing well, and the biopsy showed no cancer).
8:30 PM: Both girls had a good day today. Sophie was home with Randall, and although she was frequently demanding, she felt good and was generally happy. They went down to the Grocery Barn (the local hangout: a store, grill, and gas station owned by one of our church members) for lunch and enjoyed getting out. Sophie is looking pretty pale and is beginning to bruise easily.
Elisabeth went to school today and enjoyed a fun day. She's out of school for spring break tomorrow and all next week. We all went to church tonight for a Maundy Thursday service. There were probably about a dozen people there. Sophie was quite pleased to see Ms. Dawn (her day care teacher), who decided to join us for the service tonight. It was good to see her.
I would like to thank the anonymous person who sent a note with discount hospital parking coupons to my mailbox at RTI. You didn't say who you were but indicated you had read about Sophie and our family on the web site, so I hope you see this and know how much we appreciate your thoughtfulness.
2:30 PM: Sophie doesn't seem to be suffering any side effects from yesterday's treatment and is having a good day. She got to go spend a few hours with a neighbor (Ms. Enid, whose birthday is today!), while I took Elisabeth to her doctor appointment. Sophie had a fantastic time and informed Ms. Enid that she did not need to take a nap, because her nap time is at 3:15 (I have no idea where she got that). She is already napping on the couch now, with her thumb firmly planted in her mouth.
The doctor we saw today said that the radiology report from the hospital didn't show she had any breaks at all, but that it's hard to tell with kid x-rays sometimes. He gave her an examination, and based on where she says it hurts and the bruising pattern, he says it's possible she has minor breaks in her foot and her finger. He wants to treat them as if they're broken and check her again in a couple of weeks. She is now wearing a boot on her left foot and a splint on her left hand (the ring and pinky fingers are taped together). Both can come off for baths, and she won't wear the boot when she's sleeping. On her next visit (Monday 4/4), they will check to see if there's evidence of calcification in the x-rays (that would indicate healing from a break). If there's no calcification, everything can come off; otherwise the boot and splint will be continued.
4:00 PM: Sophie is back from the clinic and napping. The clinic called last night to let us know they were starting at 9:00 instead of 7:30, so we left later than normal. That meant we ran into traffic, and it was nearly 2 hours door to door, and she was pretty far down the list for procedures again. They gave her fluids right away, so it was fine to wait. The results of her blood text showed that her ANC (which shows risk of infection) was even higher than last week at 2.2, while her hemoglobin and platelets were low (but not at the point of transfusion yet). She went in for her spinal tap (methotrexate in her spinal fluid), and it turned out that they gave her the asparaginase shots while she was under sedation (which is wonderful, because apparently they're quite painful). They gave her vincristine through her IV shortly after she woke up. Unfortunately, she had a negative reaction to the sedative they gave her (the sedative was Propofol). It was quite similar to the paradoxical reaction she had to benadryl the night she was first diagnosed. She was very agitated and occasionally hysterical, with brief periods of calmness. Any little thing would set her off, and it lasted about 2 hours. It was very upsetting. It eventually wore off, and she was fine on the way home. We'll be sure to mention it next week, and they can explore either using a different type of sedation or adding another medicine to it.
Elisabeth is doing well today. She is able to walk on her bad foot and is planning to go to dance class tonight. We'll hang out, just in case it's too much and she needs to cut out early. We have an appointment to see the orthopedist tomorrow morning for follow-up on her broken finger.
9:30 AM: I just wrote an update containing some details of Elisabeth's accidents to my friends at work, so I'll paste it in here for those of you who are curious.
As if we didn't have enough stress in our lives, our older daughter Elisabeth (6 going on 3, apparently) has injured herself. While Randall and I were in Fayetteville having dinner together last night, Elisabeth and Sophie were staying with my stepmother Eileen. Eileen was in the kitchen preparing "hopcorn" and not moving quickly enough to suit Elisabeth, who wanted to start the DVD player. Elisabeth decided that since she couldn't reach the remote control, it would be a good idea to climb up into the armoire and push the buttons on the DVD player. She was holding on to the TV (30" and quite front-heavy) for balance, and it began to tip out. She couldn't keep it from falling, and it fell on top of her. Eileen called us, we cut dinner short, drove home, and took her to the local emergency room. She is quite bruised above her left knee and on her left ankle (she can't put any weight on it), and she broke her left pinky. We'll call an orthopedist today to arrange a follow-up appointment. We're hoping her foot feels better very soon so she can get back to school (she's missing a field trip today). Perhaps we can point to this example the next time we tell her to quit doing something because she might get hurt! Every now and then we do know what we're talking about.
Sophie's doing pretty well. She seemed more tired than normal yesterday--her counts are probably dropping. Tomorrow, she'll go to clinic for a spinal tap (chemo, methotrexate, in her spinal fluid), IV chemo (vincristine), and a chemo shot in each thigh (aspariginase). Should be a fun day.
Needless to say, between last night and the night before, we're all feeling a little sleep-deprived.
1:20 AM: We may have to start a weblog for Elisabeth! We're back from the emergency room, and she broke her left pinky (the middle bone). Her ankle is hurt, but it's not broken. She's worried about missing the Easter Egg Hunt field trip at school tomorrow. We'll see how she's doing in the morning, but I suspect she'll be staying home.
9:30 PM: Sophie had a rough night last night. She vomited once (we're not sure why), and we gave her some zofran, and later we gave her zantac. She eventually went back to sleep. We all went to church today, but she was pretty wiped out. Our excitement of the evening is that while Randall and I were out to dinner (Eileen was watching the girls), Elisabeth was trying to do something with the tv while Eileen was in the kitchen getting popcorn, and the tv fell out of the cabinet and on top of her. She is fairly bruised and can't walk, so we're going to take her to the emergency room.
7:30 PM: We had a busy day today, and Sophie handled it well. We headed out to lunch and then went to Walmart. It was the first time Sophie was able to go inside since her diagnosis (usually, her counts had been down, so she had to wait inside the minivan with mama or daddy). Elisabeth had pictures at the dance studio, and while we were there, Sophie got to see one of the teachers from Sophie's school, Ms. Cindy. Randall is giving the girls a bath, and we'll give Sophie her chemo (Ara-C) shortly. This will be the last dose for the next couple of weeks. Tomorrow is also her last dose of Mercaptopurine for a couple of weeks. Now that she's off the Lasix, that will mean no medicine at home on most days (she takes Septra M-W). As always, please feel free to post a comment. We love to hear from our friends and family.
8:00 PM (Randall posting): Sophie had a great day again today. She enjoyed having Eileen visiting. Eileen let Sophie try on some of her jewelry and at one point she had a stack of rings all the way up her thumb. Sophie also got to wear a gold necklace all day today.
Our new Home Health Care nurse visited today and I think this will work out much, much better. To begin with, she lives in the area here (her daughter is in the first grade at Elisabeth's school). She also took a great deal of interest in Sophie, getting to know her and learning her protocol and current course of treatment. She also said that we can call the Home Health Care company for any reason or any question. They are already prepared to do the blood draws but she also said she is able to help out with dressing changes or treatments or anything else. Although we are managing pretty competently on our own, it's a great comfort to know that a willing and helpful professional is just a phone call away.
This afternoon Sophie and Elisabeth played outside (Sophie in her new cap made by our friend Beth Sanchez). After dinner, Susan and Elisabeth went to visit her friend Haley, who is doing very, very well and who was quite happy to have a friend come and break up her boredom! Haley's biopsy results should come back on Monday.
10:50PM (Randall posting): Sophie had a great day today. We spent part of the morning getting ready to take Sabine to the airport, and in spite of some wintry weather, we got Sabine to RDU in plenty of time. Sophie was pretty sad to see her go (we all were), but she cheered up when she realized we would have lunch with Susan. We all ate at a deli near Susan's work, and of course Susan had to show Sophie off for her co-workers! On the way home from lunch Sophie fell asleep in the car and did not complain when I laid her down on the couch to continue her nap. Later this afternoon Eileen came, and we have had a good, quiet evening at home. At one point, Sophie wanted to show Sabine something new she had received from Eileen and kept calling "Sapina, Sapina" until I reminded her that Sabine went home to Texas. Mostly a pretty uneventful day (thankfully!).
8:30 PM: It was a cold and rainy day (or should I say, "It was a dark and stormy night..."). That didn't stop us from getting out today. We did go out for a quick lunch and a trip to the grocery store, dashing through the rain each time. Randall administered her IV chemo tonight, and she took the rest of her medicine. Dr. Gold said we could try cutting out the Lasix for a while to see how her blood pressure responds, so that's one less medicine she has to take twice a day.
Elisabeth got her report card today, and she made straight A's again, all A+'s this time. We're glad her grades haven't suffered with all the extra stress. Sabine made an excellent dinner tonight--quesadillas with homemade salsa and guacamole. She'll head home tomorrow, and we will definitely miss her. It was wonderful to reconnect with her and watch her bond with the girls. We're definitely looking forward to her next visit.
We have an update on Haley (Elisabeth's classmate and friend who had a brain tumor). She came home from the hospital late Monday night and is doing very well at home. She's on the same steroid Sophie was and is already starting to have an increased appetite. We're hoping to go visit her in the next day or two.
4:00 PM: It was a longer day than we expected, but we're finally home. The clinic called yesterday to say they would be starting the anesthesia procedures an hour later and that we should plan to arrive at 7:45 instead of 7:15. We left the house at 6:30 and got a ways down the road, only to discover we left the blankie at home. Not having the blankie would have been a big problem, so we turned around to get it. It was 6:45 when we left the house the second time, and this meant we hit rush hour traffic. Sophie got checked in at 8:20, but by that time, there were 12 other kids in front of her. Because her tummy was pretty empty from the previous night's adventure (combined with not being able to eat or drink prior to surgery), her blood sugar dropped while we were waiting. She fell asleep a couple of times and started sweating a lot. They hooked her up to an IV with saline and dextrose, and she got back to normal levels. She finally had her spinal tap at about noon and woke up very quickly after the procedure. She immediately drank two boxes of juice and all the pepperoni from a slice of pizza. The great news is that Sophie's blood levels haven't dropped yet (ANC was 1.5 this week--twice what it was last week), so we can continue to socialize for a few more days. I took Sabine to a Japanese restaurant for lunch, where she tried sushi for the first time (and liked it!). Then we stopped by Sophie's old day care in Durham to say hi to Lottie and her kids. She had a great time seeing her friends.
9:00 PM: It was cold and somewhat dreary today, so Sophie couldn't really play outside (although she did suggest it several times). Randall headed out of town this morning for a three-day workshop out at the beach. Sophie had a fairly good day and was happy to read and play with Sabine while I worked at home. We had big plans to pick up Elisabeth from school, go out to dinner, and then do a bit of shopping. Unfortunately, Sophie got sick in the car on the way to the restaurant. We cleaned her up, got some food to go and headed home. We did go ahead and give her some zofran, even though we think it was just motion sickness and probably not chemo-related. Although we gave her a bath, the smell really got into her dressing, so we went ahead and changed it. She was quite upset while it was being changed, but once the new bandage was on, she happily helped me smooth it down and take the tape edges off.
Elisabeth is spending the night at a friend's house and will ride to school with their family in the morning so Sabine can head out early to the clinic with us. It will be nice to have her help and company, and she will get a better idea of what Sophie's treatments are like. We think all Sophie has to do tomorrow is get methotrexate through a spinal tap. If we're right, and she doesn't have to take any IV chemo, we should be able to leave as soon as she wakes up from the anesthesia.
5:45 PM: Sophie got to go to church today for the first time since her diagnosis. A few people said they didn't even recognize her with her fashionable new haircut (perhaps I should consider a new profession!). Elisabeth had a few behavior problems during church, but for the most part, we did very well. Sabine was overcome with emotion seeing her brother lead a worship service for the first time. For those of us who knew him before he made the decision to go into ministry, it is an amazing sight to see him up there.
Sabine took Elisabeth to see a movie this afternoon while Sophie took a nap, and when they got home, Sabine took the girls outside to play. They had a picnic dinner in the driveway, but the mosquitos chased us inside. (Is it that time of year already?). We'll all head out to bible study shortly, and afterwards, Randall and I are going out to dinner. I've really been looking forward to that.
8:30 PM: Sophie had a good day today. Her sister was gone all day, so she had the whole house to herself. She played outside with Sabine, drawing on the driveway with chalk and swinging on the swings. We thought we were headed for another constipation problem (her last performance was Wednesday night), but she managed to make some progress in that area today. After insisting all day long that she did *not* have to poop, early this evening Sophie walked up to Randall and said, "Do I smell poopy?" She did. Fever and constipation are the two biggest things to watch for when she's on chemo. Her last at-home chemo for the week was tonight. Her next chemo will be on Tuesday through her spinal tap (Methotrexate), and then we'll do the Ara-C at home Wednesday through Saturday next week too.
Elisabeth was in a dance competition in Raleigh today, and they did a great job. They got first place in their category. It's actually hard for me to say how the group did, because I couldn't take my eyes off her. She's really becoming quite graceful, and I could see how well she was concentrating.
We got word from Haley's family that Haley (Elisabeth's friend from school who was diagnosed with a brain tumor earlier this week) came through surgery beautifully. The biopsy will take about a week, but the doctor said he was confident the tumor (which they were able to remove completely) was not malignant. Haley was talking soon after surgery (there was some concern that it might take several days for her to be able to speak again), and she may be able to go home as soon as Monday. We were certainly pleased to hear how well things are going.
5:00 PM: Sophie has had a wonderful day today. She spent much of the morning either dancing or watching TV. She took a nap right after lunch, and then we went to Sophie's day care so she could play outside with her friends. They seemed very happy to see her, and she blended right in. When we came home, Randall's sister Sabine had arrived, and Sophie was very happy to see her (even though she pronounces Sophie's name Subpoena--perhaps she'll be a lawyer someday). We're heading out to dinner together shortly, and we're looking forward to spending lots of time together! Comments welcome....
11:15 PM: Just an update about Elisabeth's friend Haley. Her surgery is now scheduled for tomorrow morning. It's should begin at 9:00 and will last for approximately 3 hours. We are hoping very much that the tumor will not be cancerous so that their family will have less of a battle to face.
8:12PM: (Randall posting) We had a really good day today. Sophie took a nice nap this afternoon and was quite cheerful when she woke up. She and I picked Elisabeth up at after-school care, did a little grocery shopping at the Grocery Barn and came back home again. Once Susan came home from work, we administered Sophie's chemo (all of us--we each did a little bit). Sophie's teacher from daycare, Dawn, then came by and visited for a while. She even brought her dog, Lucky. Elisabeth and Sophie enjoyed the dog. As I posted earlier, we had been looking forward to Family Night and it was such a pleasure to see Sophie and Elisabeth running around with all the other kids. I don't think there was a single person who didn't get "flashed" by Sophie showing her tail and her band-aid! We're grateful to be a part of such a supportive community, and we're grateful that, for now, Sophie is able to go out and be among people.
11:50AM (Randall posting) Sophie is having a pretty good morning. She's chipper as usual and took her medicine well. Our major excitement of the week is that Sophie's counts are strong enough that we can take her out in public. Susan took the girls out to dinner last night (I was in class) and tonight we have our Family Night at church. We are *really* looking forward to having us all be together at Family Night. By next Tuesday, her counts will likely be low enough that we'll need to keep her inside again for three weeks. Now is the time to go out and do stuff!
8:00 PM: Sophie hasn't had any more problems with nausea or vomiting today (but she had been on zofran the whole time, so that has probably helped). Our home health care company didn't have any available nurses to help us out, so they arranged a nurse from another company to come. She was very helpful and spent quite a while with us. She works in another county but lives just up the road. I didn't have any trouble administering the chemo, and she held Sophie's hands while I changed Sophie's chest dressing (it's very upsetting to her when we pull the old one off). Sophie's starting to get diaper rash again, so we'll really have to stay on top of changing her diapers frequently. It's also important to do that as her body gets rid of the chemo.
We heard today that a little girl named Haley (a friend of Elisabeth's in her class at school) was diagnosed yesterday with a brain tumor (on her cerebellum). Haley's mother Laura posted a comment here on the weblog on March 6 to let us know how much Haley and her family were thinking of us. When I called the hospital today, she sounded like they were handling things really well. Haley will have surgery tomorrow morning to do a biopsy and determine whether it's cancer or not. It sounds like there's a good chance it's not, which would be wonderful news. It's so overwhelming to find out about such a serious problem so quickly. With both of us, we started one morning thinking we were taking our kids to the doctor for some routine, harmless problem, and by the end of the day, our lives changed.
As always, we welcome your comments.
7:30 AM: Sophie's having some trouble tolerating the new chemo she took yesterday. She vomited twice last night. The first time, we heard her retching and ran in. Luckily, we were able to get a trash can in time. We put it under her chin, and she sweetly said, "I'm okay" and threw up a second later. Her heart was racing. We have some strong anti-nausea medicine for her to take, but she had only gotten it through her IV before, and what we have is by mouth. We weren't sure how effective that would be if she was actively throwing up. The doctor said that since she had already gone back to sleep, we should let her sleep but that if she threw up again or seemed uncomfortable, we should try giving it to her. When she threw up the second time, we gave her the medicine, and we haven't heard a peep from her since. That was around 5:00, and the medicine can be given every eight hours. She was very sweet and perky about the whole thing, and she didn't seem the least bit upset. We're thankful that the medicine she took isn't due agan for another month, and we hope that the new medicines (Mercaptopurine and Ara-C) she's taking daily over the next couple of weeks won't make her too uncomfortable.
9:00 PM: We're finally back from clinic. It was an incredibly long day. Susan and Sophie left the house at 6:00 AM, arrived at clinic at 7:30, left clinic at 6:00 PM, stopped for a quick dinner, and arrived home at 8:00 PM. Because we didn't have to wait for blood counts this morning, Sophie was first in surgery, and that gave us a head start on getting her hydrated for the Cytoxan (chemotherapy). It took a couple of hours, but she finally reached the proper hydration level, only to test positive for blood in her urine. We had to recheck that several times, because the chemo can cause blood in the urine, and they wanted to make sure they had a good baseline (and also wanted to figure out what was causing it). They ultimately decided she probably has a urinary tract infection (official results will take two days) and gave her some additional medicine to protect her bladder before and after taking the chemo. They finally started the chemo at 1:30. That took a half-hour, and then we waited for 4 hours of fluids. There was no nap until the last 15 minutes of the drive home, so she was a total crab when we got home and she had to take medicine (or go to bed, or anything else she didn't want to do). Other than that last fussy period, she has been an absolute doll today.
Our biggest frustration of the day was dealing with the home health care company. The way we understood their role is that they would supply us with training and medical equipment. Up to now, they have pretty much stuck to the supply part of their responsibility. Since we will need to administer chemotherapy ourselves starting tomorrow, we are anxious to make sure we know what we're doing, and today, the home health care people called to confirm a shipment for tomorrow (but no training). I mentioned our concerns about not knowing how to inject this drug to the nurse practitioner at the clinic, and after several phone calls, she got it straightened out and said that the nurse would be coming tomorrow. A nurse also sat down with me and talked me through the procedure, and I'm certain I can handle it, but we're finding it quite frustrating that the home health care people are being so un-helpful.
10:00 AM: (Randall posting) The clinic did not bother to check Sophie's counts this morning and she will be moving forward with the next phase of treatment (consolidation). Today she will get yet another spinal tap (with a dose of chemo thrown in for good measure) and a new chemotherapy drug that requires several hours of IV fluid before it can be administered. She will also start two additional drugs once she gets home (one of which is an IV drug that we will need to administer at home--pray for us!).
5:30 AM: We're heading to the clinic shortly. For those of you who may check in occasionally today, we'll post an update as soon as we get home. if you don't see an update by late afternoon, then it's likely they decided to do the procedure.
1:30 PM: The results of Sophie's blood test from this morning are in. In order to begin the procedures tomorrow, her ANC needs to be .75; as of this morning, Sophie's ANC was .76. Because her level is so close to the cut point, they want us to bring her in to the clinic tomorrow morning, where they will run another blood test. If her ANC is still above .75, they will proceed with the spinal tap and chemo. Otherwise, we'll just bring her back home. Susan will be handling Sophie during the day tomorrow.
5:00 PM: It's been another good day. One of Sophie's former day care teachers (Ms. Maria) came to stay with her today while Randall, Susan, and Elisabeth went to church. Tiffney did a great job preaching, and we all enjoyed the support of our church family. We had naps this afternoon (some of us did, at least), played outside, and we're now working on dinner. Randall's leading a bible study at church tonight, and Elisabeth wanted to go. We're thinking about taking Sophie too and have Susan hold her away from the group. Everyone really wants to see Sophie, and Susan has been missing bible study.
We're looking forward to seeing tomorrow's blood test results. If her white count is high enough, we'll start chemo again on Tuesday. One of the medicines can cause damage to the bladder, so she has to be extra-hydrated before they inject it into her line, and then they have to continue pumping fluids after the medicine is done. It's an all-day affair. Randall is handling his first funeral on Tuesday afternoon, so if we do head to the clinic, he'll take her in the morning, and then we'll switch off.
We're going to try activating the "comments" feature of this weblog. This allows visitors to leave comments in response to entries. We're hoping this will allow Sophie's friends and family to communicate more easily with us and each other.
8:30 PM: It was a lazy day today. Someone is preaching for Randall tomorrow, so he didn't have to spend the day working on his sermon (as he often does on Saturdays). Our only obligation today was an extra dance rehearsal (Elisabeth's class will be in a competition next weekend). Other than that, we slept and played. The girls played together with their dolls this morning and pretended to change each other's diapers. They also played with (and fought over) a big box that the dress-up clothes were in. Just a little while ago, they got a bunch of pieces of scotch tape and played doctor, using the tape as bandages.
6:30 PM: It's been a quiet day today. Sophie took her afternoon nap in the morning, and we had lots of good snuggle and giggle time today. This afternoon, the weather warmed up a little, and she went outside to swing. Elisabeth wanted to get the box of dress-up clothes out of the building, and the girls are trying out all the outfits. They look so cute, but Elisabeth's room is completely piled with clothes.
6:00 PM: Update from our friend Cindy: Sophie had a great day! Or, maybe I should say I had a great day because I was with Sophie. I arrived on Sunday to help Susan and Randall, and since then I've had the privilege of playing with Sophie everyday. It is hard to believe that this normal, smart, energetic, sweet little girl is facing such a scary illness. I guess what makes it bearable is how normal she is. As she was swinging this afternoon, she shouted, "I AM HAPPY!" Wow, Sophie....so are we.
6:00 PM: We took care of a few medical procedures for Sophie today. We flushed her line (injected saline solution and then heparin to prevent the line from clotting--we do this three times per week), and we changed the dressing covering her catheter. This process is incredibly upsetting to Sophie, especially when we have to take the old covering off. Susan got everything ready while Cindy gave her a bath. Then Susan quickly took care of the dressing change while Cindy held Sophie's hands and tried to calm her (no easy feat). It gets quicker every time we do it, but she doesn't seem to be getting any more comfortable with it, probably partly because she just doesn't like her chest to be uncovered for that long. Once it was over, she was back to her normal, happy self.
She's been so in touch with her emotions lately. Yesterday, when Susan was kissing and tickling Sophie, she stopped and said "I love to laugh!" Today, Cindy was pushing her on the swing outside (which she loves), and she said, "I am happy!" She has recently sidled over to each of us (including Cindy) and said, "I love you." How amazing and wonderful!
11:30 PM: It's been a good, uneventful, day (that's part of what made it good!). We had car problems (again), and took the car in for repairs (this time here in Dunn instead of in Durham). Sophie was concerned all day about the car being "sick." When we picked up the car, she asked whether the car was "all better." Then she wanted to know if the car got a tail (that's what we call her catheter). What a sweetheart! Interestingly, last night the girls took the first bath together. Sophie has been so sensitive about her chest that she didn't want Elisabeth to be in there with her. But last night, Elisabeth joined Sophie during the last part of her bath. The girls were playing, and Elisabeth was pretending she also had a tail, and she told Sophie to be careful about splashing because she didn't want their tails to get wet. Elisabeth has been doing a great job as big sister and is very empathetic. She has a really hard time when Sophie gets upset about something. Hearing Sophie cry seems to bring about a combination of emotions (worry, fear, jealousy), and of course, it's hard to comfort two kids simultaneously. We think that, sometimes, Elisabeth just needs to have a good cry. Don't we all!