Sophie's World

3:31 PM It snowed today! As we were eating breakfast, we just noticed an occasional flake, and after a while, big, fluffy flakes were falling out of the sky. I know that for some of you (in New Mexico and Colorado, in particular), this is just not that big of a deal, but both of our girls were very excited about this weather event!

We're all doing well. Sophie goes in tomorrow for treatment and to check on her counts. She's at about 95% of her chemo dosage now, so this'll be a big test for her. We're hoping that past successes with getting "stuck" will continue tomorrow!

Posted by Randall at 03:31 PM | Permalink | Comments (1)

2:54 pm I wanted to post another update so that Elisabeth would get a picture online from last week's snow. I had to ask first because she's grown a little shy about us posting stuff on the blog about her. She always asks, "Are you going to put that on the blog? [she just told me not to put that on the blog, either!]" Anyway, here's a picture of Elisabeth having fun in the snow:

She's getting ready to throw a snowball at me (she missed).

Sophie's clinic visit went very well on Friday. There was only one stick (hooray!) and her counts came back really good. The doctors are not raising her meds any further, so we'll stay at 95% or wherever we are right now, at least for another month. Dare I say it--Sophie has four more scheduled clinic visits until the end of treatment. Of course, there will be all kinds of follow-up, but all of a sudden, we are nearing the end of this wild, wild ride.

Posted by Randall at 02:54 PM | Permalink | Comments (2)

8:07 AM Well, I had a long, detailed post that simply evaporated in front of my eyes. So, here's the abbreviated version:

Sophie went to the ER last night with a fever. She's had a runny nose for a day or two and has been complaining of a headache. Susan took her to our local ER (not our favorite place), but it seemed to turn out okay because our friend Carole from church was working there. Sophie did well with the blood draw and her counts came back okay. They're a little low, but okay. Apparently, Sophie hated-hated-hated the flu swab (up her nose) and the bad news is that she does have the flu. We're not sure what the means treatment-wise or even how that will affect her overall health. She's had a flu shot, but she got it anyway. I'm hoping that the shot will help minimize the symptoms or decrease the amount of time she's sick. We'll see. We're waiting to hear back from Chapel Hill today on how to proceed. For the moment, Sophie and Susan are both sleeping since they didn't get home until 5am this morning.

Posted by Randall at 08:07 AM | Permalink | Comments (1)

10:00 PM: Sophie has done pretty well. She was clearly pretty miserable yesterday and spent most of the day with a fever that Tylenol wasn't helping. We started her on Tamiflu yesterday. Between that and the flu shot she had a couple of months ago, she already seems much better. She didn't have any fevers today, and we will send her back to day care tomorrow. Her class valentine's party was today, so she missed it, unfortunately (last year she was in the hospital on valentine's day). She cried this morning about missing the party, but she was pleased that when Randall came home from dropping off her valentines and snack this morning, he came home with a bucket full of valentines and candy from her classmates. She had so much fun going through everything. Everyone else in our household seems to be healthy so far.

I also wanted to share some details from our trip to the ER. The thing I was most proud of was how well she did when they drew blood. It was as if they were simply taking her temperature--she was so calm. When the woman came in to begin, Sophie told her we would need to get a bandaid ready, and that she should do it slow so it wouldn't hurt. I had put numbing cream on her hands before we left home, and afterwards, she said it didn't hurt at all (and, I might add, the bandaid they brought was seemed to be more adhesive than normal, so I suggested to her that we skip the bandaid so it wouldn't hurt coming off--she agreed).

Now the flu swabs in the nose were a different story. I had to hold her down screaming, and then her nose started bleeding (and continued to bleed through the next day). We had arrived at Betsy Johnson around 9:30 PM, and the blood test results finally came back around 2:00 AM. I had the discharge papers in my hand, and I noticed that Sophie felt hot, so I asked to have her temperature taken. It was 103.2, so they ordered Tylenol and we had to wait until it came down. We checked every half hour until 4:30 before it finally came down. Then just as we were leaving the room, the doctor stopped back by to say that the flu test had come back positive for Influenza B. But we got to come home anyhow, thank goodness. Sophie had slept quite a lot while we were there, but I didn't sleep at all. It was good to be home.

Posted by Susan at 10:03 PM | Permalink

8:50: Sophie has recovered nicely from the flu, and her doctors wanted her to come in to Chapel Hill for a blood test sometime this week to make sure her counts are okay. I was going to take her on Thursday, but yesterday she was throwing up all afternoon, so they want us to bring her today. So I'm headed up to Chapel Hill with her shortly. She says she is going to be brave and isn't going to cry when they draw blood. If it goes as well as it did in the ER, the clinic staff will be impressed!

She says she wants to say something, so I'm going to tell her what letters to type when she tells me what she wants to say: "i am very good at the clinic. i love the people at clinic."

I'll check in and let everyone know how things went when we get home.

Posted by Susan at 08:50 AM | Permalink | Comments (2)

9:20 PM: I didn't exactly post an update when we got home, as promised, but everything did go well. Her counts are great, and the doctors thought she looked good. Tuesday is always a busy day at the clinic because it's the only day they do sedation, so we went pretty late (arrived just before 10:00). We saw one of our favorite doctors (Don Coulter), and he said after the blood test, we could just go home and they would call us with the results (instead of waiting). He went over the the hospital then for the rest of his day.

We waited, and I noticed that several people who had come in after us were having their blood draws done. One of the nurses asked if she had cream on (which she did--we always apply the numbing cream before leaving home). A while later, the nurse came over and said they didn't actually have any orders to do a blood draw and asked whether Dr. Coulter had mentioned doing a blood draw. He definitely had intended that we do one, so he had to come back over and submit the paperwork (accompanied by lots of apologies).

Just before 1:00 they called her in. She was totally ready. She was so ready, she said she didn't need to take her blankie into the room. For those of you who know Sophie, you'll know that Sophie without her blankie is a rare event. As Mary checked her veins to decide which hand to use, Sophie said she could feel Mary's touch. It seemed like after 5 hours, the cream had started to wear off. We went ahead, and she was fine when the needle went in. The blood didn't come out right away, so Mary had to do some repositioning of the needle while it was inserted. Sophie stayed totally still, but she did whimper a little bit. Before we knew it, the blood started flowing, and we were done. Sophie picked out a little toy care for her treat, and we left. On the way home, we called Grammy. Sophie said "I have good news and bad news. The good news is that I held totally still. The bad news is that it hurt." But she was excited about only having to suffer one poke. When her Daddy got home, she told him that it hurt when Mary "got near the vein" (that's what Mary had said after she was done--that what seems to hurt is not piercing the skin but getting the vein). I actually thought the problem wasn't the vein but that either we had waited too long between applying the cream and doing the blood draw or that it had thinned out too much under the Glad Press-and-Seal we had used to hold it in place.

Sophie goes back to day care tomorrow, and we're all doing fine. Sophie goes back for chemo in a week on Tuesday. Four more treatments to go!

Posted by Susan at 09:20 PM | Permalink | Comments (1)

1:40 PM: One more treatment down; three to go! Sophie and Randall left early this morning for the clinic. She was scheduled for sedation today (for a spinal tap), so we always try to get there early so she's high up in the queue. Randall said it was a pretty frustrating experience. The first attempt at an IV in her left hand didn't work. He suggested (because the nurses had said in th past that it would help) that they put a warm washcloth on her right hand before attempting again. They seemed very annoyed by the delay but did get a warm cloth (which Sophie described as being on fire--a little too much on the hot side, I guess). A little later, they tried the IV on her right hand, but that wasn't working either. They spent a lot of time trying to flush it with saline, and Randall said Sophie screamed every time they did that. They got it working well enough to administer the propofol (sedation) but didn't feel comfortable pushing chemo through it.

While she was knocked out for the spinal tap, they put an IV in her foot and gave her the vincristine that way. Her doctor said the veins in her feet are really good (just down her foot from the outside ankle) and suggested we try doing future blood draws that way to save the veins in her hands. She seems open to that (especially when Randall mentioned that it meant she could freely suck both thumbs), but I do wonder how we're going to put cream on before we leave and still have her wear shoes for the walk between the parking lot and the clinic. Maybe we can buy some special flip flops or something.

After she recovered from sedation, the doctor told Randall that Sophie's ANC is only .9 (they want it to be at 1.0 or higher). Unfortunately, we don't know whether it's on the way down or on the way up. They want to check her again in two weeks (yet another blood draw--it's no wonder the child's veins are in trouble). Until then, we're going to be extra careful about washing hands, but we aren't going to keep her home from day care (mostly because we both really need to work during the day).

Posted by Susan at 01:40 PM | Permalink | Comments (6)