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!