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!
Update from Keith: February 8th, 2008
For the first time since before Christmas, Taylor sniffled. It was the most beautiful sound I have ever heard, It means she is able to get air in through her nose, past her tumor. That was unthinkable only last week. Life is good tonight.
I started thinking about the progress that Taylor has actually made since we first got here (tonight is night 18). Being here every day, we miss the small things. If we were here only once a week (as if), her progress would seem much more momentous than the tiny steps that we see every day. Thus, it escapes us that she really is getting demonstrably better.
Since we first arrived, Taylor has stopped throwing up blood (although she is far from having stopped throwing up), she has stopped having constant (or even any) bloody noses, and she is now able to squeze the slightest bit of air through her nasal passages. All of these things are evidence that her therapy is working; the poison the doctors pump into her body is killing the even deadlier substance in her head.
Taylor has mostly been a treat today. She woke up a little grumpy for her radiation appointment early this morning. For whatever resaon, the hospital could not locate a wheelchair (!) to bring her down to radiation oncology. So, I improvised by carrying her downstairs. Both Daddy and Taylor love that method. I think I'll do it every time they let me. Taylor insisted on it when it was time to come back up to her room.
She apparently slept away the day until awakening at 3:30 and going to the playroom with Nana and Grandpa. She seemed very conversational when I arrived (although still sometimes grumpy; querying Grandpa at one point, "Don't you even think?") and we went to the playroom when it opened again at 6. She even ate 1 Chicken McNugget and 3 apple slices.
Tonight, she and I have had a great time. We cuddled on her bed while watching Zack and Cody and part of the movie, Chicken Little. At 11:10 PM we secured the nurse's permission to go downstairs to the McDonald's in the hopsital that is always open. I ordered a strawberry milkshake; she chose Vanilla. She said "Hi" to the passersby we encountered creeping through the hospital halls. I even felt sorry for the other parents walking by on their way to the Emergency Room with what loked to be sick kids. For once, mine seemed to be the best-off. It was a beautiful illusion (and one I have wholeheartedly immersed myself in).
When we returned to her room, we watched Return of the Jedi and sipped milkshakes. Dad and daughter at the movies.
I know cancer means steps back for each leap gained.. I know that lows always follow the highs. But tonight seems the highest of highs. The lows seem a universe away.
I am reminded of Churchill's words following El Alamein: "Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." I'm not even sure we are at the end of the beginning, yet, but I do know that we are on our way. That is more than enough for now.
Update from Kristin: February 7th, 2008
Day 16.... I hesitate to write and admit this but Taylor has been doing very well today. The reason I hesitate to write this is our experience has been that for every one good day, we get two bad. The reason for the improvement? Drugs. They finally got sick of me running down the hall every ten minutes to scream at them.
Update from Keith: February 6th, 2008
Today was a mixed day. There were some pretty good signs. Taylor was much more comfortable going down to radiation this morning and had no problem with any of the things they have to do to get her ready for anesthesia. That was a marked contrast from yesterday when she was really having an awful time down there. I'd like to think the improved attitude was due to her getting used to the routine, but I have a strong suspicion that the dose of morphine they gave her 15 minutes before we went down was the real reason behind her nonchalance. Opiates will do that.
Included among the not-so-good-signs was a return of frequent vomiting. She still won't eat and we have now gone since Sunday that she has eaten a meal. Since that time I think she has had half of a Kit-Kat bar and 4 french fries from McDonald's. She almost threw up the french fries. I wish we could figure out a way to eliminate her nausea in a way that does not increase her pain and which will allow her to eat again.
Speaking of pain, she continues to be clearly uncomfortable. She was in a bad mood most all of today because of it. Her pain will hopefully be a distant memory in just a couple of weeks as the radiation and chemotherapy begin having significant effects on her tumor, but we are not there yet. We're not even sure if the pain in her head is causing her nausea or if the medicines are causing the pain in her tummy. As to which pain is worse, it is hard to say. Regardless, she is very uncomfortable and it is hard to watch.
Taylor has had what we have dubbed "Hospital Hair" for most of the 2 weeks she has been there. Hospital hair is a matted, unkempt, bee-hive like fro that inspires comments from nearly all who see her. It was sop tangled that it made no sense to even try to comb it as it would just lead to pain. We have been waiting for her discharge to take her to a barber to get a buzz since she'll lose her hair anyway, but the nurses finally took pity on us and helped cut it short today. Her new 'do not only looks better but it will make things like putting on her oxygen mask late at night much easier. Plus, it's cute, in a cancer kind of way.
I know I'll get in trouble for writing this, but I am worried about Kris. She has been really down this week at the hospital. I think the combo of Taylor's continued pain plus not being able to take her home yet has really got her down. This whole thing seems only 16 days old to me (essentially beginning with the first CT scan on that fateful Tuesday) but for Kristin (and in reality) it's been around much longer. I was in France for 7 days when T really started taking a turn for the worse and I was in Baltimore when she started throwing up blood a couple of days before the CT. Thus, the burden of Taylor's illness has been on Kris much longer than I. She is especially sensitive to Taylor's pain and takes each discomfort hard. She eats little, sleeps less and (not surprisingly given T's condition) gets very down. The only long-term solution will be T's improved health, but in the short term I am going to urge her (us) to see a psychologist who specializes in cancer-families. The hospital has several and a couple others have been referred to us. In the meantime, please include Kris in your prayers, too.
Tonight Nana is staying with T, and Kris and I are home with Charlie. We went out to dinner at Charlie's favorite restaurant, Panda Inn (he likes the Pot Stickers). Everything was great until Kris got up to take Charlie to the potty which brought memories of Taylor and her love for going potty with Nana at Panda Inn into my mind. I'm sure the other diners were wondering why I was crying and I scared Kris on her return as she thought I must have heard some bad news. Nope, just a temporary loss of control.
Tomorrow is Taylor's third radiation treatment. I've been going to work each day this week, although on a shortened schedule. I'll be with Kris and T for her radiation appointment and then go to the office once she is back in her room. Then, it will be back to the hospital in the afternoon. It's wonderful therapy for me to get back to work. The closer we can get to our pre-cancer schedule, the easier everything will be.
It's great to be home with Charlie and Kris tonight, but it is a lonely house without Taylor. I can't wait until she comes home.
Update from Kristin: February 5th, 2008
So we have successfully completed our first radiation treatment. I would have to say that Taylor was less than enthusiastic about the whole thing and would probably not be encouraged by the fact that there are 27 more to go. They put them to sleep so it really shouldn't be too traumatic once she knows what to expect.
Taylor is still quite uncomfortable. They removed the drip and tried to decrease the pain meds but she just wasn't ready and the pain got out of our control and we have had a hard time getting a hold of it again. Much of the day is spent trying to convince the doctors that she is in pain. They are concerned about her breathing, which obviously is very important, but we don't believe that the morphine is what is causing the breathing problems. It is much more likely the very large tumor that is blocking her airway. We do understand that the combination of morphine and the tumor causes problems. We just hate to watch her in pain because all she can do is lie in bed and stare at the ceiling. The good news is that the doctors expect that with the combination of chemo and radiation, the pain and breathing should resolve themselves within another week. Please pray for that!
The rest of this week will be filled with radiation and hoping and praying for improvement so that we can get home. Her white cell counts are very low now so we also have to hope that she doesn't get an infection. Kind of seems like if it isn't one thing, it is another these days.
Weekend Update from Keith: February 4th, 2008
We learned a truth about Taylor's fight with cancer this weekend: for every three steps forward, there are apt to be two steps back. Sometimes, there may be only two steps forward and three steps back.
After we enjoyed a wonderful Thursday afternoon/evening and all day Friday with a smiling, happy, enthusiastic T, Saturday was a marked difference. She threw up over night and they gave her anti-nausea medication that caused her to sleep most all day Saturday. She was back to the Taylor that she had been earlier in the week--in pain, overly sedated, and non-responsive. In addition, her breathing difficulties resumed.
We've learned that the secret to improving Taylor's spirits is getting her out of bed no matter how much we have to fight her. Keith forced her to get up and go downstairs to play games that we had checked out from the playroom on Taylor's floor. Taylor won games of Dora Checkers and quite a few games of Connect Four before returning to her room. Her spirits brightened and she even decided to order a pizza for dinner from the hospital cafeteria. Her Nana (Keith's mom) spent the night with her on Saturday and Keith and Kristin were able to go out to dinner and then return home together for the first time since Taylor arrived at the hospital. Charlie loved having both parents at home on Sunday morning.
Taylor took 2 steps back again on Sunday; she threw up overnight and didn't feel well much of the day. Keith is coming down with a cold and left the hospital for a few hours (conveniently coinciding with the Super Bowl) and Taylor became sad that Daddy was not there. Uncle Kirk and Aunt Brooke visited, however, and Taylor's spirits brightened considerably. Keith returned and Mom, Dad, and T went downstairs at 9:00 and played eight games of Uno. Taylor went 5-3 in those games (Mom won once and Dad twice). She was back to being her old, happy self and Mommy and Daddy loved seeing it.
Taylor received a blood transfusion on Sunday. This was to raise her hemoglobin levels in preparation for Monday's first dose of radiation. She will require anesthesia for Monday's radiation, as with all 28 sessions of her radiation treatment. Normally, the protocol for Taylor's cancer would not include administering radiation this early in treatment. She must have it now, though, because of the tumor's proximity to her brain. We are trepidatious about what side effects her radiation will bring. Although we know there are many more steps forward remaining in this process, there are also a considerable numbers of steps backward, too.
Taylor is still in the hospital. Until her breathing during sleep improves, she will continue to be at the hospital. We badly want her to return home, but we are scared that she may have breathing difficulties at home during sleep which will go undetected. At the hospital she is constantly monitored and nurses come in when her oxygen saturation falls below certain thresholds. We cannot duplicate those levels of protection at home. Thus, we remain a broken family for now; broken not in spirit but in location. Hopefully, we will all be reunited soon.
Mini Update: February 3rd, 2008
The following are bits and pieces taken from some emails from Kristin over the weekend:
Saturday was a so-so day - Taylor threw up in the morning and then slept all day until 4pm. She was in good spirits in the evening, until they gave her some vicodin and she threw that up too. They are trying to get her off the morphine pump and onto oral pain relief. Kristin is unsure that she is ready for that.
Sunday was blood transfusion day. They say it might help make her feel a little better too. She is off the morphine drip so the hope is that her breathing situation will improve a bit. She is starting to sound a little more clear to K, but there is still a long way to go.
Radiation starts Monday morning. As Kristin says: "I am kind of glad about that because it will continue killing some of those tumor cells and hopefully bring her even more comfort."
Check back for a more detailed update on Monday afternoon re: the blood transfusion and first day of radiation. Sweet Taylor is being SUCH a trooper and brave girl. It is amazing how well she is coping with her situation. GO TAYLOR!
Update from Kristin: February 1st, 2008
Today was a great day here at the hospital. Taylor was awake this morning and has been all day. Considering the fact that we pretty much had to throw water on her face in the days past to get her to wake up, we feel that this is great progress.
She has been to the playroom twice, ate half a sandwich, drawn in her "diary", and has taken a bath! It was such a delight to see her singing in the bathtub. We have all enjoyed having the "old" Taylor back with us.
She will begin radiation on Monday. They are fairly certain that she will need a blood transfusion on Sunday because her hemoglobin is a little low and they need it to be higher for radiation. She is also still having a few breathing problems when she sleeps. They said as soon as her breathing problems resolve, she should be able to return home. We don't expect we will be out of here before she beings radiation on Monday and that is fine. We are just happy to see her bouncing back. Keep your fingers crossed that things continue to improve!
