Update from Kristin: May 14th, 2008

After multiple calls from people asking if Taylor was still in the hospital, I realized that we had not updated the blog! Taylor was actually released a week ago. We came home last Tuesday with antibiotics and that same night, her eardrum perforated. She had complained about it in the hospital and had said that there was water coming out of it. One of the doctors looked in it and said it was hard to see because it was covered in wax but that the eardrum looked okay. But when she woke up on Wednesday morning, her shirt and pillowcase were covered in a yellow discharge. We called the doctor and they prescribed some ear drops and that was it. She said it didn't hurt and she didn't seem to be as bothered by it as I was. Other than that, things have been great.

We had a very nice and relaxing Mother's Day weekend. Taylor's Aunt, Uncle and cousins were in town from Las Vegas. We made it out to the golf course on Friday afternoon and Taylor putted a few balls, rode around in the golf cart with PaPa, and played with her cousins. She was tired at the end of the afternoon but was wearing a huge smile on her face. Saturday was a quiet day at the house. Sunday we had dinner with friends at the Kennedy home and Taylor again got a chance to play and have fun. That night, Samantha and Taylor painted masks, decorated flip flops, and chased their brothers around the yard and house with tennis racquets (Ann and Mark are much nicer than Mom and Dad!)

On Monday, I was able to drive Taylor down to her father's office to visit and join in their birthday lunch. They were celebrating May birthdays and since Taylor will be six on May 23rd, they were very sweet and sang Happy Birthday to her and let her blow out a few candles. She was so happy to get out of the house and also to spend some time with her dad.

Last night she was so tired that she could barely move when her Grandpa and Nana came by to visit. She told me that she thinks she"needs more blood." I wasn't sure if all of the activity of the last few days was finally catching up to her or if we really will need another transfusion. Coincidentally, we have an appointment down at the hospital today with Dr. May to get the "all clear" for chemo on Friday. At that time they will draw her blood and see how low her hemoglobin is. That said, she was still up and reading Encyclopedia Brown books with her Grandma this morning and was once again wearing a big smile.

Taylor has been more and more herself these days. We get so bogged down with the daily grind: ruptured eardrums, low blood counts, and other side effects that we sometimes do not stop to remember the days that she was crying from pain, couldn't breathe, and could not even hold a conversation! We are grateful for every step forward in her recovery. Hopefully the chemo on Friday will not be too hard on her and she can continue to improve!

Update from Keith: May 4th, 2008

This has been a cancer kind of weekend. Taylor got a transfusion of red blood cells Friday morning. She's been getting transfused on a weekly basis of late because of low hemoglobin levels. For once, we actually secured an early morning appointment and Taylor was back home at 1:30 or so in the afternoon for what we hoped would be a quiet weekend at home. It was not to be.

I came home in the evening and there was a lot of blood in and around Taylor's mouth. Ominously, little of it was dry, meaning that she was bleeding in her mouth. Although she had been transfused with red blood cells in the morning, she had not received platelets. Her platelet numbers were borderline and there are apparently strong medical reasons not to just give platelets every chance they can. Thus, they decided not to. We would regret that before the night was over.

As evening turned to night, Taylor's bleeding grew worse. It was never anything close to gushing, or even trickling, just a constant red/black tinge around her lips. When we used suction to remove some of the mucus in her mouth (as we do many times every day), the mucus came out red. Kris e-mailed her oncologist to apprise him of her situation. He asked us to monitor it closely and come to the hospital if the bleeding increased.

At a quarter to nine it was clear that Taylor needed to go the hospital. Her mouth was bleeding more and the wound from accessing her port that morning to get her transfusion had bled through the bandage.

We are very lucky to have the support system that has emerged during Taylor's illness. From all those who bring us dinner from time to time, to the many who have brought Taylor gifts, to those whose prayers have helped, and everyone else who has helped us down this road, we are extremely grateful. Mostly it feels like we are not alone which makes all of this much easier. Whenever we need someone to come over to watch Charlie because we need to take Taylor somewhere, we always have people to call on whether it's my parents, or Kris's parents, or my brother and Brooke or someone else. There's always someone available to help . . . except for Friday night.

It was the perfect storm: a surprise trip to the hospital combined with everyone else having plans (it was Friday night, after all, a night that could actually be rather fun when we lived in the non-cancer world). Kris's mom and Bob were out of town; Kirk and Brooke were in the desert; my parents were out to dinner with house guests; and it was so late that we didn't want to call any non-family members because of the imposition. So, we hoped my Dad had his cell phone and could come over and watch Charlie.

We started calling him both at home and on his cell before 9. Nothing. We probably called every 60 seconds to one or both numbers. Not a thing. Kris called Annandale in the hopes they were there; they were not. Finally, sometime after 9:30, my Dad answered the phone at home. They had just returned from dinner. Exactly why he did not have his cell phone with him I cannot say. I was frustrated that we had delayed getting Taylor to the hospital because of his unavailability and I am sure my tone of voice (and my words?) conveyed my frustration. To my father's credit, he did not get upset, just pledged to be at our house quickly, and left immediately. To his further credit, he made great time.

Thus, just before 10, we left home for the hospital (Kris, Taylor and I) with my Dad staying behind to watch Charlie.

The Children's emergency room is always a scary place when you bring in a neturopenic child. The emergency department waiting room is always chock full of coughing, crying kids. I always wonder how many of them have had access to regular immunizations which scares me further. Even a relatively benign virus or bacteria could endanger Taylor's life when she is so neutropenic.

At least the powers that be at Children's recognize the danger. Access to triage from the waiting room is controlled by a security guard. Most of the patients are in the waiting room, virtually no one is behind the door in triage. When we walked up, he immediately sprang to action and cleared Taylor and I into Triage while Kris filled out the admission forms. I guess Taylor's bald head and surgical mask--she always wears it in the hospital when she is anywhere but the 4th floor to avoid infection--gave us away.

Triage also processed us quickly and pretty soon we were admitted to the Emergency Department proper and situated in Room L. All we needed was a platelet transfusion which usually takes about 30 minutes and does not even need a pump--gravity suffices to transfuse the platelets. First, they had to access her port, though. There was a considerable bruise under the skin from the morning access and the lack of platelets. She was also bleeding from the morning's needle stick. To my mind, this should have shown the nurse exactly where her port is, but apparently not because the first 2 sticks failed to get the needle in her port.

The way they check to see if they have properly accessed the port is simple: they shove a three-quarters inch needle in that has a tube coming out of it, they attach a syringe with saline to the end of the needle, they push in a little saline and then pull back the plunger on the syringe. If the tube coming from the needle fills with blood when they pull back the plunger ("return") they know they have hit the port.

The first two times there was no return. Taylor was in agony; not so much because of the pain but because of the thought of the pain (she builds up the needle stick in her head big time each time). The only time before that someone ad failed to access the port on the first try, Taylor threw such a fit (I don't really blame her) that they had to wait a full day to try and access it again. This time, Taylor persevered. She was very brave. And, the third time produced a return. Finally.

Taylor is always energized after her port is finally accessed. She gets so worried ahead of time that the relative lack of pain from the event makes her feel relieved. I'm sure she also has some adrenaline from the worry of it. In any event, the same was true on Friday night; she was a lot happier after her port was accessed.

We read Potter for a while (we are in Harry's third year now) and they finally came in with the platelets. By the time she was transfused and the needle taken out of her port it was early Saturday morning. We finally got home some time after 2 AM. My poor dad was still awake and could finally leave once we got back. At least Charlie stayed in bed.

Taylor slept late on Saturday (she did wake up at 4:30 to throw up, but she throws up most nights). Not until after noon, did she awake. She was clearly miserable most of Saturday. We worried about her temperature because a fever would send us back to the hospital. It was fine most of the day.

The last time she had a chemo cycle, the Saturday one week after chemo saw her temperature get dangerously close to a fever. They consider above 38 Celsius to be a fever. That time, she had a couple of 37.9's, a few 37.7s and even one 38 (38 even is not "above 38"). After flirting with the edge of a fever for a few hours, she finally backed down that Saturday, much to our relief.

She seemed to follow the same pattern this Saturday. She started getting closer and closer to a fever, but not quite. I was optimistic that history would repeat itself, but it was not to be. Around 9:15 we measured her at 38.3. Dread filled my stomach. The second (weekend) night in a row at the hospital, only this time she would not come home.

Kris called the hem/onc (hematology/oncology) fellow to let her know we were coming in because Taylor had a fever. The usual protocol is to come in, go to the Emergency Department and start treatment there while they wait for a bed to open on 4 West (the solid-tumor wing of the cancer floor). We've done that before, usually spending all night and most of the next day in the ED before finally getting a 4W room. This time we were lucky, there were beds available on 4W. The hem/onc fellow told us to just skip the ED, go to hospital admitting, and they would send us right up to 4W.

This time my Dad was home. He came over again to watch Charlie (who was sleeping already) while we went to the hospital. We got through admissions relatively quickly and were assigned to 437B, where we spent most of the month of February.

There was a little bit of drama when we got to the room. Kris and Taylor went straight to T's bed, while I went to the nurse's station to check in. They had not heard that T was being sent up (they knew she was coming but thought she was in the ED). They were shocked and her nurse was a little upset that the ED had not called to warn her. I explained that we had bypassed the ED entirely and it turns out the hem/onc fellow had yet to call and explain the situation. They eventually got things sorted out and checked T's temp around 11. She was 38.1. Barely a fever, but a fever nonetheless.

Accessing her port was an adventure for the second day in a row. Again, it took 3 tries. We finally realized that a big part of the problem is that T likes to sit up which makes it much harder to access because she can squirm a little so they miss. She lay down for the third try and it worked. They immediately started heron antibiotics.

Kris spent Saturday night with T while I went home. It was an uneventful night at the hospital. The only time T has had a fever here so far has been the first reading they took on Saturday night. (Although as I write this at 9:45 on Sunday, her temp is 37.7). If she can keep a fever away and her neutropenia resolves, we can go home. Unfortunately, it is unlikely her neutropenia will resolve for a few more days.

Thus, we are back in the hospital, praying that this does not lead to another 32 day visit. Things seem a little better this time: the floor has a number of empty beds (which is good, less misery going around); Taylor's in good spirits; there is no outward sign of any dangerous infection; and, the playroom is finally open on weekends (where was that when we were here nearly every weekend in late January, February, and March?). We hope this will be a short stay but experience has taught us that it is impossible to predict. As long as she keeps getting better, we can live with unpredictable.