Taylor is back in the hospital. A 103 degree fever led us to 24 hours in the Children's Hospital Emergency Room (beginning at 7 on Monday night) before she was finally able to get a bed upstairs (yes, we're back "home" on 4 west, the solid tumor wing of the cancer floor at Children's). Just to make the circle complete, we are back in the same crappy three-person room that Taylor was originally admitted into when she first came to Children's on January 22.
Taylor's most recent course of chemotherapy (which was administered last Tuesday night/Wednesday morning at midnight) has left her severely neutropenic. Doctors and nurses love tossing around terms like that (I've decided that it's a form of testing; they use their own (mostly ridiculous) vocabulary to see if they can treat you like a dolt. If you have to ask them what their terms mean, they know they can sneak anything past you; but if you use one of their words correctly they have to actually respond to your questions with real answers which, of course, incorporate new, multi-syllabic gibberish designed to pin down the extent (or lack thereof) of your understanding). To the rest of us, her neutropenia means that she has virtually no white blood cells and is unable to fight off infection on her own. Thus, having a fever (often a symptom of infection) means immediate courses of broad-spectrum antibiotics. And a trip to the emergency room.
Frankly, if neutropenia + fever were her only problems, things would be fine. Her fever has gone down steadily and she didn't really have one for most of today. She's had three courses of three different antibiotics and her blood cultures have come up clean so far. Her biggest problem, which we have been fighting a losing battle against for weeks now, is her inability to eat. She's wasting away.
She's lost about 25% of her body weight at this point. Conservatively, I would say that she has had no more than 1 meal per week (that's right, per week not per day) since she first arrived at the hospital and received a diagnosis. I'm not sure I can remember the last time she ate an actual meal.
Things turned worse this weekend. Her mouth hurts so much from the radiation that she can no longer talk. She communicates by grunting, although sometimes she tries to talk without moving her mouth, like a ventriloquist. We rarely understand what she is saying. The burn in her throat is so bad that she stopped swallowing even her own saliva yesterday. She now drools onto ever-rotating sets of towels that the nurses bring her.
We have tried everything over the last few weeks to get her to eat. But the agony in her mouth cannot be overcome by wishes or promises or love. It breaks my heart to watch her struggle to please us with a small sip of water when I now realize the searing pain she experiences.
We've given up on eating. Unbeknownst to us, her oncologist and radiation oncologist met on Monday to discuss her deteriorating situation and decided that she needs a GI tube to deliver nutrition. Kris and I had surrendered to its inevitability independently about the same time. The plan was to give it to her under anesthesia following today's (Tuesday's) radiation visit, but her emergency room visit and poor health canceled this morning's treatment. Now, the risk of infection may make that too difficult and she may have to have intravenous nutrition which carries with it its own problems. There are no simple solutions. Mostly, there's just problems.
I don't know how Taylor will take to the feeding tube. She's already experienced far more than any five year old should endure and there's much more yet to come.
I look back on those original timeless weeks in the hospital and I recall my naivete. I thought that getting home would somehow cure most of our problems. It has only made them worse. Now, I think that getting her through her radiation treatments and allowing some time for her mouth to heal will make all the difference. I wonder if it is just more naivete.
I'm not sure what the current criteria for her discharge from the hospital will be. At the very least, they would like to see her neutropenia diminish before getting home. That would probably mean coming home Friday or Saturday. I think, though, that the focus will quickly shift from her neutropenia to her nutrition which could keep us there far longer. As with all things cancer, there's no quick fix.
Update from Keith: February 26th, 2008
Unexpected Trip...February 26th, 2008
The following news from Keith came early this morning:
Taylor is back in the hospital. She was running a 103 degree fever yesterday evening (turns out when one's child awakens from a nap and asks for an ice pack, it's a sign of fever--who knew?). She has received two courses of three broad spectrum antibiotics over the last 12 hours to help fight any infection. T will probably be here for at least a couple of days. More to come later.
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...
Update from Keith: February 19th, 2008
Taylor's homecoming last week was not quite the magic elixir I had imagined it would be during those dark, tense nights at the hospital in previous weeks. Taylor simply will not eat and it is difficult to watch her waste away. She has lost 20% of her body weight and her bones are protruding. She has gone from being even chubby to where she is now emaciated.
We try everything we can can to persuade her to eat. There is nothing off limits to her. We offer candy, milkshakes, donuts, anything. Treats previously off-limits to her are now available at her every request. Except, of course, she makes no such requests. I have never heard a child so derisively dismiss the offer of treats.
Sometimes we beg her to eat; sometimes we threaten her with dire consequences if she doesn't eat; sometimes we scold her into eating--nothing works. We've told her that continued refusal to eat will result in the doctors putting a tube down her throat to deliver nutrition, but it doesn't sway her. She makes clear she wants no part of that fate, but she reamins unwilling to do the only thing which will prevent it--eat. It turns out a mouth scalded by daily radiation treatments simply can't be cajoled into eating.
I have known that three steps forward (coming home) usually means some steps back (starvation) but this is especially hard to take. I can handle watching her throw up; I even learned to handle watching her struggle to breathe, but I can't watch as she wastes away. I hope and pray that she turns soon.
I learned another lesson about cancer over the weekend: even 5 year olds realize that it is awful. Despite my constant attempts to improve her attitude, she seems depressed. Her failure to eat leaves her devoid of energy which keeps her in bed, which keeps her feeling down. We are trying everything we can think of to get her out of bed and distract her from her condition. She attended the SC-UCLA basketball game with me this last Sunday and enjoyed it. Kirk had to carry her down the stairs of the parking structure and I had to carry her back up, but otherwise she enjoyed herself. She got some new SC hats and even ate a little bit. We only lasted for the first half, but that saved us the rush of traffic at game's end along with the indignity of losing. I thanked her for sparing me that experience.
Things are not all bad. Charlie loves having us all back together again. That has been a wonderful by-product of Taylor's return home. He is much happier than in previous weeks and it makes us happy to see that.
Today Taylor went back to the hospital. It was a planned return as it is time for her chemotherapy again. Wonderfully, she was in great spirits. Tonight she ate a bag of Cheetos (we will stock up on that at home so if anyone local reading this fails to find a bag at their local store, just know that the shortage is due to a good cause). She also had some of a chocolate milkshake and some french fries.
Her treatment is clearly having some beneficial effect. We are still some 8 or more weeks away from a scan which can show us definitively what is happening to the tumor, but the outward signs are fantastic. Her nose no longer discharges blood-tinged mucus and she can sniff. This morning she smelled my cologne which took me by surprise (I didn't put on all that much, I swear). For the first time in more than a month, she sleeps quietly. She slept in our bed on Sunday night (cancer kids get special privileges, especially when it is 3:15 and they otherwise refuse to go to bed) and did not snore at all (I cannot say the same for myself, but one problem at a time). Thus, we know that her treatment is achieving some great results, but it only serves to make her lack of eating that much harder to take.
I fear that her eating won't improve until well after radiation finishes next month. I'm not sure her body can wait that long.
I'm off out of town again. Last week it was Memphis Wednesday-Friday, this week it is New York. It's therapeutic for me to concentrate on other problems and these trips more than deliver on the opportunity to do so. Still, I know that it makes things hard on Kris and I spend my down time thinking of T and her fight and dreaming of days to come when cancer will be a distant memory. Unfortunately, that remains a long time away.
Update from Kristin: February 14th, 2008
The first night home was a huge success. Taylor was so happy to be home and was much more vibrant than I had seen her in weeks. She slept until 5:30 with her oxygen and came in because she needed to use the restroom. She took a little tylenol and went back to bed until we had to wake her up to go to radiation. She slept the whole time in the car so she missed the traffic. The radiation treatment was quick and we were on our way back home. She had some cereal and took a three hour nap. A side effect of radiation is pretty severe fatigue so naps will probably be a part of the routine now. We had a few visitors after that. Her head was bothering her a bit this afternoon but she seemed soothed by half a dose of her pain medication. Later she had more tylenol. I hope that her pain continues to improve. Some days will probably be better than others.
Charlie saw Taylor just briefly this afternoon and laughed and said,"T, your hair is messy!" She told him that wasn't really possible because she doesn't have any hair. He then laughed and said, "You look funny!" She didn't seem to mind but she doesn't pay attention to most of the things he says. We were worried that he would find her scary but he really didn't seem to care so that was a relief.
Keith left yesterday for a business trip to Memphis. He was so disappointed that the first time he has had to go out of town since Taylor was diagnosed, she returned home. He is anxiously awaiting Friday night when he gets back. We have radiation tomorrow and then the weekend off. She will probably have her chemo treatment on Tuesday which will take us back to the hospital for a few days. Keith will be gone for three days next week too so he will miss out on all of the fun. I think Taylor knows that she will have to go back to the hospital again, but I haven't told her exactly when. We don't need to talk about that quite yet. We are really looking forward to the weekend and hope she remains comfortable and can enjoy some of it!
Happy Valentines Day!
HEADING HOME! February 13th, 2008
The word from the hospital is that Taylor is on her way home today! They are going to be heading home with an oxygen mask, as T's breathing isn't totally up to par, and Kristin has some concerns as she still has some pain and nausea. But hopefully being in her own bed in her own house will be beneficial to all. Keith is out of town until Saturday, so Kristin has her hands full, but I am sure she will update in a day or two. Until then, everyone send good, positive thoughts towards them so that Taylor's homecoming will be smooth and uneventful!
Update from Kristin: February 12th, 2008
We are still here at the hospital. Taylor seems to be doing pretty well. She is losing her hair quickly and is pretty much bald on the sides. The hair loss coupled with the morphine has made her itchy.We have to change the pillow case about every two hours. The doctors are starting to talk about getting us home. They have switched her from the iv morphine drip to oral morphine. They said that since she has been on it for almost three weeks now, we will have to gradually decrease it since she is probably a little dependent on it.
The other issue that is delaying our return home is her nighttime breathing. She is still having little episodes of apnea. The doctors are trying to schedule her for a sleep study to see just how bad the apnea is and if she is able to wake herself or if she needs to wear an oxygen mask. She probably had the apnea for a few weeks before the hospital and many healthy people suffer from sleep apnea but we wantto take every precaution so that we all rest comfortably at night. She is scheduled for her next chemo early next week so that will require another stay in the hospital but I think it would do all of us good to get home for a few days.
We continue to go to radiation everyday. She doesn't seem to mind it too much. She looks forward to being put to sleep- that way she doesn't even know what is happening to her. Ignorance is bliss. We are told that the effects of radiation will begin to build and it will start to take more of a toll on her. That's fine as long as it takes a toll on the tumor too!
