Update from Kristin: February 21st, 2008

I keep thinking that this is going to get easier and it just hasn't yet. After suffering from what seemed to be morphine withdrawals over the weekend, Taylor finally seemed to come around on Tuesday, which was the day that we checked in to Children's Hospital for her second cycle of chemotherapy. She was in such a nice mood that evening: singing and coloring and seemingly having fun. Neither she nor I knew what was in store for us in the next 48 hours.

When we checked in, Taylor was pretty dehydrated. This was no surprise as most of the water in our bodies comes from the food we eat and she isn't eating, so they had to give her some extra fluids before we could get started. Finally, around 11pm they were ready to give her the chemo. While on radiation she only receives 2 of the 3 drugs: cytoxan and vincristine. The third (and harshest) drug, Actinomycin D, (or something like that), does not react well with radiation so she was spared it this time. The treatment lasted an hour. As they were removing the chemo bottles from her iv pole, she started to complain about feeling"tingly." She became very agitated and complained that she was very uncomfortable. The nurses finally decided to give her some Benadryl and Reglan which had been added to the orders to assist with nausea. We weren't sure if she was nauseous but figured it might help her to get some sleep. She was restless until about 4am, but finally drifted off for a while until we had to get her up for radiation at 7:15. As for my night, when we had checked in the night before, we had been given a private bed in the bone marrow transplant unit instead of the oncology unit. The private room part was nice, but unlike the oncology ward, the room strangely didn't have a sleeper for the parents, so I had the pleasure of "sleeping" on the floor listening and watching her moan all night - torture for a mom!

It was around the time we got up for radiation that her stomach began to misbehave - only she wasn't throwing up, but having that other problem. She kept moaning that her stomach hurt. The hospital was packed and they had 15 patients in the ER waiting for beds so they were very anxious to move us along. Around noon, we agreed to take her home as long as they provided us with IV hydration because the cytoxan is very hard on the bladder and there was no way she was going to drink anything for us.

When we got home, Taylor was understandably very tired and slept for most of the afternoon. She came downstairs with the best intentions of eating dinner and tried a few bites but just didn't seem very comfortable. She climbed back in bed and buried herself in her comforter. The home health nurse who had delivered the IV hydration had taken Taylor's temperature earlier and it had registered a little high. I decided to check her temperature and was disappointed to see that it was 100.5. I called the doctor on call and was told to keep my eye on her for the next two hours. I checked her again a half hour later and her fever had risen to 102.8. Off we went to the emergency room (the perfect place to go with an immuno-supressed child...) with Keith's father escorting us.

Luckily, the ER was very good about ushering us past all of the sick kids (notice how I still refer to them as the sick kids - not MY cancer-ridden daughter). We were again placed in a private room where they tried to draw some blood only to discover that the pic line had a clot. So they gave her some clot thinner which we had to wait for to kick in before they could continue. We were visited by a resident that told us that her blood counts were still pretty good so they would give her an IV antibiotic and more hydration (as she was dehydrated again) and then we could head home.

By this time it was already 1am and we had an 8:15am radiation appointment, so we were pretty certain that we would be there through the night. They finally appeared with the antibiotic around 4 am. They told us they were going to give her Rosefin which would last for 24 hours. I told the nurse that would be GREAT if only she wasn't ALLERGIC to Omnicef, and that I had been told that Rosefin was in the same family of antibiotics. The nurse looked at me like I was crazy and said he would check with the doctor. The doctor came in and asked what had happened when she had Omnicef and I told them that she had gotten a rash. He asked me if she was really that bothered by it. I just looked at him and told him that I was bothered by it..as well as by the risk of anaphylictic shock. I finally got them to agree with me and they found another antibiotic, which didn't arrive until 4:45. Around 5 am we were good to go. At that point we decided to stay put until radiation. Taylor had been sleeping and seemed to be okay. Bob and I, however, did not sleep a wink! It was a long and torturous night, especially since I had not really slept the night before. That stretch of time from 5 until 8 seemed like a lifetime.

We discovered that we would need to go to the outpatient clinic later that day or the next for another dose of the antibiotic. We had hoped to coordinate that with the blood transfusion that she needed for radiation. We hoped and prayed that would all be on Thursday. Guess what!?!?! That just wasn't going to work. They said we needed to go to the outpatient clinic for the antibiotic immediately following radiation. Who needs sleep anyhow? So off we went to the clinic. At the clinic they told us that it was too soon for the next dose of the antibiotic but that we needed to have the transfusion today and she also needed more hydration. They suggested that we stay for a few hours for hydration, transfusion, and THEN she could have the antibiotic. I really just wanted to throw myself on the floor and cry but forced myself to remember that this is all for Taylor and no matter how uncomfortable I was, she was much worse. Then I looked at her and realized that SHE hadn't thrown herself on the floor crying about it, so I couldn't either.

Thankfully Keith's mother offered to come down and take my place there with Keith's Dad. I gratefully accepted. My mom came down and picked me up so that I was able to go home for a nap. Taylor seemed to be okay with me leaving and I called after my nap to see how she was and she just chatted away. Her fever had broken in the ER, but she was flirting with one again. She was home by 4:30 and was in great spirits. We ordered pizza and she has been working on half a piece for an hour now. I guess it is time to tackle the eating problem again. If it isn't one thing, it is another.

She is really trying her best and her attitude has really been improving since last week. The doctors are all very encouraged with her progress. Her breathing is vastly improved and they think she is doing well. I just have to keep reminding myself that she is improving because I don't always feel that way when she is sick and uncomfortable. No pain, no gain...