I apologize for not doing a better job of late at updating the blog. It is hard for me to do when Taylor's doing reasonably well, as she has lately. Writing for the blog brings me back to those timeless empty nights we spent at the hospital in January, February and March. It's a place in my mind I don't like to visit.
Today Taylor had surgery. It has been planned for some time. We knew that Taylor's NG tube had exceeded its expected life span (this was reinforced on Taylor's birthday, 5/23, when Kris could not get anything through the tube, brought her to the hospital and finally a dose of peroxide combined with shoving a metal wire through her tube opened it again). Thus, one of the things the doctor accomplished today was replacing Taylor's tube.
The other thing we wanted was to see if they could clean out her nose, mouth and throat of the prodigious amounts of mucus that haunt her without end. The doctor was able to clear one nostril, but not the other (T's left nostril is nearly closed with scar tissue and needs more extensive repair than is wise to undertake during chemotherapy). The doctor also scraped off her mouth and tongue; the latter of which smelled like violent death due to the hardened mucus deposits on top of it.
The surgery went very well. The doctor opined that Taylor will have difficulty speaking for some time because of sores on her tongue and possible neurological effects due to her chemo drugs (akin to causing her tongue to feel deadened and making it hard for Taylor to move it). Frankly, I think her speech has been much better of late and I understand much of what she says now; Kris comprehends even more.
We had wondered if Taylor's next chemo treatment (currently scheduled for Friday) could take place after the surgery so that we would not have to come back to the hospital at the end of the week. No luck. While Taylor's platelet counts were enough for surgery (the surgeon prefers at lest 60k, T's were 66k), they are not enough for chemo (oncology likes counts above 75k). Judging by the amount of blood still in her mouth following today's procedure, I'm not sure if she'll have enough platelets for chemo on Friday. I guess we'll see then.
We've mapped out Taylor's planned chemo cycles and the current schedule has her last chemo delivery on Halloween. It seems so far away. it is.
This upcoming chemo cycle marks a new phase. Taylor will get weekly doses of Vincristine for the next 6 weeks, beginning Friday. They did that back when she first started her chemo and it was not particularly enjoyable. It's hard to say if that was from Vincristine, though, or from the daily radiation. I'm not looking forward to this 6 week regimen. It will be nice when it is over.
The last few weeks have been great. She had her birthday on 5/23. It was only 7 days post-chemo, so we just celebrated at home with family. The following week we had a party at Chuck E. Cheese that Taylor loved. Most of her friends were there and I think she enjoyed being a regular kid again. If only for a few hours.
She is going to spend some time at Mayfield tomorrow with her class. The last time she visited, she absolutely loved it. I think tomorrow will be great, too.
I almost forgot the best by-product of her surgery. Taylor lost 2 teeth! Her bottom, center teeth have been loose for some time, although we did not realize it until the day before her surgery when the doctor pointed it out. During her surgery he extracted them so that their falling out would not cause a problem. The tooth fairy will undoubtedly visit tonight. She is very excited. Another chance to be a regular kid.
Lately, the last 10 days or so of her three week chemo cycle have been great. She's been active, engaged, and happy during those times. We now try to schedule things so that she can take advantage of those times to do fun things, see friends, etc. I hope the weekly Vincristine doses don't change this.
Of course, things aren't all rosy. She still throws up a lot (especially at night) and struggles with the problems in her mouth. Her walking remains greatly affected, although even that has improved. Regardless, she is much better than she was 3 months ago. I hope the same is true 3 months from now.
I'll try to be better about updates. She'll get chemo on Friday so we'll probably do an update at the end of the weekend, or early next week. Thanks as always for your love, your help, and your prayers. We can never thank everyone enough or begin to repay all we've received. Nonetheless, we appreciate it all the more.
Update from Keith: June 4th, 2008
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.
Update from Keith: April 28th, 2008
Friday was Taylor's regularly scheduled day for chemo. Chemo days are always a little uncertain. We never know if there will be a hospital bed for her or not. Thus, Kris has to call early in the morning (about 8 am) to let them know that we are coming in for chemo and need a bed. Then, Kris has to keep calling every few hours or so until they tell us there is a bed available.
On Friday, we learned that Taylor could come down at about 1. Once we got there, we had to stay in the waiting area as the promised room was not available. Taylor wanted to go to the playroom, so we went up there when it opened at about 2. After half an hour in there she was zapped, so we walked down the hall and found that a bed was finally available. It worked out perfectly and Taylor got some rest.
After obtaining a bed, the next order of business is getting hydrated. To do this, they have to access T's port which means sticking a needle in her chest. Not surprisingly she hates that part, although she usually reports that the pain was less than anticipated (of course, she forgets this by the time the next one comes around). Poor T gets very nervous about this and is nauseated leading up to the actual event. She always holds one of our hands and squeezes very hard when they prick her. On Friday, things went smoothly and T told us that it didn't hurt too bad. She is always quite relieved once it is over.
After hours of hydration, they finally gave her the chemo around Midnight on Friday night/Saturday morning. Delivery of chemotherapy requires significant preparation in terms of dosing Taylor with medications to try and limit chemotherapy's side effects. Thus, in addition to her usual regimen of medicines (oxycodone, remeron, mucinex, fluconazole, and Bactrim (only on weekends)), she receives Zofran (an anti-nausea drug that is often part of her regular regimen, especially after chemo), and Ativan (an anti-anxiety drug that has anti-nausea effects on chemo patients). She had first received Ativan the time before and it worked very well. She did not throw up at the hospital at all the time before. Of course, once we got home and had no Ativan she threw up copiously. Thus, we secured a scrip for Ativan so we could adminster it at home this time.
(As an aside, if this list of medications seems long, it is not half of the medications that she received during her last extended stay in the hospital).
The chemo itself is fairly quick; it consists of three drugs (poisons literally as they are designed to kill cells). Two of them are just "pushes" (i.e. the nurse loads it in a syringe and just pushes the contents of the syringe into T's port). The third has to be pumped into her body over an hour or so.
On Friday, administering the chemo went just fine. In fact, Taylor was wired. The Ativan might have been part of the reason why, but it also turns out that Mom let T sleep in until 11:30 on Friday morning, so that she wanted to stay up watching movies with Dad all Friday night. As such, we stayed up until 2:45 watching Annie, the Adventures of Sharkboy and Lavagirl and other such fare. T finally went to sleep then.
When Taylor gets chemo, it is imperative that she urinate every two hours for the first 12 hours following the therapy. One of the chemo drugs can have a particularly harsh effect on the bladder, so she needs to eliminate her urine frequently to keep it out of her bladder. They keep her well hydrated to assist with this as well as to keep the concentration of the drug in her bladder as small as possible.
The effect of this is that we have to awaken her every 2 hours to go to the potty. I woke her at 4:15 the first time. She was quite groggy. The nausea also caught up with her and she threw up. This was unfortunate because they won't release kids to go home who are still suffering from bad nausea. The previous chemo trip she was able to avoid this so we went home after less than 24 hours. I woke her again at 6:15 and then 8:15. Each time she went to the potty, but also threw up. By the time 10 am rolled around she had thrown up 4 times already (there was very little for her to throw up as we had not fed her for a day or so, knowing that chemo would make food impossible).
I went home to sleep at 9:30 on Saturday morning as the hour and a half between 2:45 and 4:15 and the almost 2 hours between 4:30 and 6:10 represented my only sleep the night before. During the day, Taylor remained nauseated and they added Benadryl and Reglan to her anti-nausea medications. Although the doctor pretty much left it up to us as to whether to go home on Saturday, we consulted Taylor and her nurses and determined that it was best she stay at the hospital on Saturday night. Taylor requested that her Nana spend the night with her and the two of them had fun.
By Sunday morning, Taylor had stopped throwing up and was stable. Everytime she has chemo, her face gets swollen. She had her normal Chemo "puffy-face" on Sunday. Everything looked fine and we were able to bring her home by noon on Sunday.
Since coming home, Taylor has been in good spirits although she is tired out from her chemo regimen. As always, we will cross our fingers and hope she does not develop a fever in the next few weeks so that we can avoid going to the hospital.
Being back in the hospital over the weekend was bittersweet. It is nice to see many of the nurses with whom we are friendly and the staff at the playroom. Kris is friends with some of the other cancer moms and they got back together and traded stories. The sad news is that apparently 3 children died on the floor last week (one of the deaths, we are told, was not from cancer itself but from developing an infection while neutropenic which is why we must go to the hospital whenever Taylor develops a fever following chemo). It was an all-too sobering reminder of what is at stake.
Update from Keith: April 23rd, 2008
At the outset of Taylor's treatment, they told us she would not have any scans to see the progress of her therapy's effect on the tumor until 12 weeks had passed. In the end, because she got a sinus infection, she had a CT scan after only 7 weeks or so, that showed excellent progress. Yesterday was her first 12-week scan.
Taylor has managed to stay out of the hospital the entirety of her current 3-week chemo cycle. Or at least she has managed to stay out of spending the night at the hospital. She has been in each of the last two Fridays to recieve blood transfusions (thanks again to all who have donated).
It has been wonderful for all of us to have Taylor home during this stretch. She has been able to get out of the house a little bit and has generally been much happier than she usually is at the hospital.
Taylor's CT scan yesterday was all good news. The tumor has continued to shrink. The scan cannot reveal whether the tumor cells are alive or dead which is the true measure of success, but a shrinking tumor is very good news. Taylor's oncologist seems pleased by her progress.
Taylor will be back in the hospital overnight on Friday for her regular chemotherapy regimen. Last time she made it through the first day without throwing up but had a really bad second day (at least it was at home). We have asked to modify her anti-nausea medicaiton somewhat in the hope that we can avoid a traumatic Sunday. We are very hopeful that things will proceed as they did last time: chemo on Friday night, home on Saturday afternoon.
While things are much better than they were in February and March when Taylor spent so much time in the hospital, there are still problems. Taylor's mouth is still a mess and there is no end in sight. Each chemo treatment exacerbates the damage the radiation did and makes healing that much tougher. She throws up usually once a day or more because of the collection of mucus in her throat. That usually provides her enough relief to take her to the next day. We also suction her mouth regularly but much of this stuff is stubborn and doesn't move. Moreover, Taylor's mouth is very sore and it hurts for her to clean her mouth. It's no fun.
Taylor also has some lingering neurological effects from her chemo drugs. Her gait is ungainly and it is sometimes difficult for her to balance while walking. This is a side effect of one of her chemo drugs. It has improved a little over the last week or so, but it's probably an issue that she'll struggle with for a while.
We are encouraged by her CT scan results and have even begun settling into a routine that we never chose, but must accept. So much has happened since she first started her course of treatment and yet we are less than one-third of the way to completion. Now we embark on a constant grind of dealing with Taylor's mouth problems, feeding her through her tube, administering her medication, hoping to avoid spending nights at the hospital, and (most importantly) healing.
Update: April 12th, 2008
It has been a week since the last post, so I thought I would fill everyone in on what has happened. Basically, it's been textbook - in a good way. Taylor had her chemo treatment last Friday. She was admitted overnight, and discharged the following afternoon! That was great, considering that the last time she went in for chemo, she didn't leave the hospital for a month. The following couple of days were pretty rough on her - she was extremely nasueous, and was vomiting often. But K and K were able to keep her hydrated with some Pedialyte, so she didn't have to go back to the hospital. The rest of the week was pretty uneventful (I think!?!), though she is still struggling with a lot of mucous and swelling in her mouth. She is still very, VERY uncomfortable.
Yesterday, Kristin took T to the hospital so the doctors could evaluate whether or not to give her her weekly dose of vincristine. They decided to give her half of a dose. While they were there, they did a blood draw to get her counts and ended up determining she needed a tranfusion. Kristin was worried they might have to admit her as she spiked a fever one time in the past when she was receiving platelets. Any fever is cause for admission. But she didn't! So she got to go home. Where she remains at this very moment! Keep your fingers crossed.
K and K are planning on taking a few current pictures of Taylor that we'll get posted soon. For any of you reading this who have children who may visit with Taylor at some point in the future, it would be good of you to show them these pictures so that they know what to expect. It is hard to describe to a 5 year old what she is going to look like - and even to adults who knew her before - but she has lost an incredible amount of weight for her small body, her hair is all but gone, and she has a tube in her nose. As Kristin was saying, tubes scare children. And while I am on the subject of future visits, I am going to say on behalf of the Thorells, because I know they would never say it themselves, that Taylor has become aware of her appearance and is very shy right now. She is not often in the mood to see anyone outside of her immediate family. Thank you very much to all the wonderful helpers who have been bringing food and treats to the Thorells - it is so appreciated, but please do not expect to visit with Taylor when you are doing the drop off. At this point, she is really not up for it for the most part.
That's all for now. A real (and probably more accurate) post will be coming from K or K soon. Until then, continue the good thoughts and prayers for sweet T.
Update from Kristin: April 4th, 2008
We are back at the hospital for Taylor's fourth cycle of chemo. It broke all of our hearts to come back here, especially Taylor's! The last few days had been pretty good ones. Her spirits improved a great deal. She spent most of her days out of bed. She wasn't overly active, but it really lifted her spirits to get up and move around.
The preschool she had attended, Our School, brought over a wagon spilling with toys (many thanks to everyone for that!!) and she spent a good deal of time going through it each day and picking out activities. She and Charlie painted dinosaurs, fought over Transformers, and looked through books together. We even had a chance to dye Easter eggs, which we weren't able to do last week because we were in the hospital.
There is always a constant reminder that she is a new and different Taylor and probably will be forever, but for the first time in months we saw her singing and dancing and laughing at jokes. She is still fighting a pretty rough battle with the mucous and she still needs help getting up and down the stairs but she is now able to hold her head up and has been willing to get out of bed and give a few things a try.
She has been begging to go miniature golfing - thank heaven for the rain because I have a feeling that might be a little more activity than she can handle yet.
We all noticed that she wasn't walking quite right on Wednesday. One of the side effects of the weekly chemo that she gets, Vincristine, can cause children to drop their feet when they walk. This has something to do with the nerves and stopping the drug for a period of time usually corrects the problem, so the doctor has decided to hold that drug for at least this week until it corrects itself. She has also had a drooping eyelid on the right side and the doctor isn't certain if it is also from the Vincristine or from the radiation, or if it is damage from the tumor.
The pain in her head seems to be easing a bit. I am not certain if that is because it is actually getting better or if just being home and out of bed and not thinking about it all of the time makes it less of an issue. She is on a four hour cycle for her pain medication, oxycodone, and the last two hours were always a little rough but lately I have not noticed her grimacing and holding her head as often during that last two hours, even while here at the hospital. Maybe it is wishful thinking but nothing would make me happier than not having to watch her live in constant pain!
The next week or two will probably be rough. The actinomycin-d isonce is once again included in the chemo protocol now that the radiation is complete. It is a pretty harsh drug and can also cause "radiation rebound." Since the damage and pain from the radiation are stillc ausing problems, I can only imagine what she will be forced to endure. She is also expected to have more nausea and more severe neutropenia than the last two cycles which did not include the actinomycin. Considering that during last cycle she got pneumonia and a sinus infection, this could get ugly again. We are told that we could be out of the hospital as early as tomorrow, but that seems optomistic. It would be great but seems very unlikely. The last two times that she has had chemo, she has also spiked a fever the following day, so maybe going home too quickly would only result in a night spent in the emergency room!
We will try to keep everyone updated but please continue to think good thoughts and pray for Taylor!
