I recognize that I have not updated the blog in a long time. I confess to actively avoiding blog updates; even begging Kris to do it instead. Writing the blog exacts a strange emotional toll. Revisiting dark moments is hard; often too hard. So I choose not to and let all of the readers down. For that, I apologize.
Taylor is home now. She had chemo on Monday night. It was possibly the easiest chemo she's had: no throwing up; no coming down off ativan (and crying for hours); no complications. The reason why this week's chemo was so easy: she received a half-dose of each drug. Of course, that begs the question, why the half-dose.
For the same reasons that I have not updated the blog, I have not read the blog. Thus, I may repeat information already communicated. Please forgive this transgression.
Taylor, as I think we reported, was in the hospital from mid-August until early October. That was her worst hospital stay, punctuated by two trips to the ICU and numerous frightening moments. It was a stressful time. During that hospital stay, her liver began showing signs of problems. At first, we thought it was due to feeding her with TPN. Recall that Taylor threw up her NG tube at the beginning of her mid-August stay and there was a lag of a couple of weeks before her G-tube was placed and functional. Because there was no real way to get her nutrition through her gastro-intestinal tract because of the NG-tube's absence, she received nutrition intravenously by way of a substance called TPN.
Of course, we are not meant to put food directly into our bloodstream; ideally it should pass through the stomach and intestines first. TPN bypasses these organs and puts an especially heavy strain on the liver which is stuck picking up the slack so to speak. Taylor began showing signs of abnormal liver function not long after starting on the TPN.
We hoped that as her treatments grew more distant from her TPN feeds, her liver function would normalize. Unfortunately, each chemo session since has shown abnormal liver function. Thus, the doctors are convinced that she has a mild case of a potentially fatal liver problem known as VOD which can be a side effect of chemotherapy.
A second confession: I know little about VOD. Intentionally so. For now, it is a boogie man lurking inside Taylor. A reincarnation of the tumor's malevolence. As near as I can tell, there is no real treatment for VOD, other than to avoid provoking it in the first place. As long as Taylor's VOD stays mild, she will have no problems. If it gets severe, it seems there is little medicine can do other than hope it passes. Although no doctor has ever told me this, I can guess that cancer kids aren't really prime candidates for liver transplants; I imagine they prefer to give scarce healthy livers to patients with a better prognosis.
Thus, the decision was made to delay chemo and to cut the doses. Taylor's last chemo before this week's was delayed by a week. Her liver function still became abnormal. Severely so. This week, we both delayed the chemo and cut the doses in half. This will hopefully avoid provoking the VOD.
I suppose I should have seen this from the start. The more chemo Taylor's had, the harder it is on her small body. I thought we'd be pro's by now, sailing through treatments with all of the unknowns gone. In fact, it is just the opposite; new problems seem to emerge each time. Thank God there is only one treatment left to go.
Taylor has been mostly home the last three weeks (although I have not, unfortunately). It has been great for all of us to have her home. She is walking much better and starting to settle into a home-bound routine. We hope it will become reality in just a few more weeks.
So, she is home now, awaiting the next fever. We hope she makes it through Halloween. She deserves it. She will be Hermione Granger from the Harry Potter books/movies. She's very excited. Charlie will be Darth Vader which will be fine as long as he does not see his own reflection. If he does, he will be so scared that he won't want to leave the house. It still amazes me that the kid who is so afraid of Darth Vader that he refuses to watch a Star Wars movie or cartoon without asking first if Darth Vader is in it (so he can run out of the room if the answer is affirmative) wants to be that very character for Halloween. It should make for an interesting night.
I haven't wanted to diminish the recent good times by re-visiting the bad ones in order to update the blog. All of you deserve more. I will try to improve. In the meantime, the important thing is Taylor is well and home. I pray the future brings more of the same.
Update from Keith: October 30th, 2008
Update from Keith: October 3rd, 2008
After 3 nights and 2 days at home, Taylor is back in the hospital. She had a fever when we checked this morning at 6:30 am.
Admission is much tougher with Taylor now because she picked up an infection last time that is resistant to Vancomycin (this is the antibiotic that is the last line of defense for MRSA as I understand it). Thus, Taylor must be in relative isolation whenever she is in the hospital, meaning she can't have a roommate. Although we loved having the whole room to ourselves the last few weeks before Taylor's discharge, it makes coming back much harder because having just one available bed on 4 west is not enough. For Taylor to get admitted, they need 2 available beds so she can have her own room. Thus, we are a little worried that we could get stuck in the ER tonight.
For now, Taylor is in the day hospital, which is the outpatient clinic in the building behind the hospital. That's plenty comfortable (and is the advantage of her finally getting a fever in the morning rather than late at night which requires an ER visit). If they can find 2 beds upstairs, Taylor will move in there some time today. If not, I suspect that she will be in the day hospital until they close around 6 (although they've been known to keep it open until 8 or so) and then, probably, we'll have to go the ER which will be awful.
Taylor seemed to feel mostly OK today. She's been throwing up a lot lately which is not great as she really needs her food. She is emaciatingly thin, especially her legs. Moreover, her achilles (or whatever muscles/tendons are on the back of her calf) has shrunk considerably due to all the time she has spent in bed, making standing up and walking a near-impossible chore unless she does so on her tippy-toes. It is essentially impossible for her to stand with her heels on the ground and her feet pointing forward. I was hoping that the more walking and standing she did at home would improve the situation, but now she's back getting extended bed rest.
Oh well. I'd much rather face the problems of having to eat more and stretch her legs than cancer. After two more chemo treatments, I'm hoping that we can work on those and other minor problems and leave the cancer behind forever.
Update from Keith: October 1st, 2008
After 48 days in the hospital, Taylor came home last night. She had chemo on Friday so she doesn't feel her best but she is much better than she was a few weeks ago.
In all likelihood, she'll be back in the hospital by the weekend. She has developed neutrapenic fevers nearly every time she has had chemo. Nevertheless, we are ecstatic that she is home and glad for any time that she is out of the hospital.
Only two chemo sessions remain in Taylor's course of treatment. We have our fingers crossed that they proceed without complication.
Quick Update from Kristin: September 23rd, 2008
Taylor has been out of the ICU for several days now. The chest tube was removed a few days ago. We have not been able to return home yet, though. She is still receiving IV antibiotics for the three infections that she developed while neutropenic.
She has a particularly bad ear infection that needs to be treated for three weeks with antibiotics. The only antibiotics which work for it have to be given through her IV, and that may or may not be possible to do at home.
We are also not up to speed on her feedings. They have been increasing her vet slowly.
We have chemo on Friday and the whole process starts over again. Unfortunately, we may be here for another two weeks!
Update from Keith: September 17, 2008
Tuesday was another long day for Taylor. She remains in the PICU.
She seemed OK for most of the day but she still has breathing issues. She received various medicines to assist with her blood clotting deficiency and the doctors decided to put in a chest tube this evening to drain some of the fluid in her chest.
I watched the chest tube insertion. They did it here in her PICU bed (she received strong doses of Ketamine and had no real idea of what was happening). They drained more than 200 cc's of yellowish fluid from her chest. It went off to the lab for testing.
As soon as they were finished, Taylor was in extreme discomfort. It's the worst I've ever seen her. Every breath was pained and accompanied by a moan/grunt. She thrashed about as she tried to find a comfortable position. She was literally writhing in pain.
They increased her Dilaudid substantially to help her cope. Finally, after an hour or two of pain she seemed a little better and first Grandma and (later) Nana read to her. Late tonight they decided to remove more fluid. They got another 90cc's before the pain was too much for Taylor to bear. She has now (It's 1:15 am, Wednesday morning) settled into a listless sleep, soft moans accompanying most breaths.
Her heart rate was elevated much of the evening and night but has settled back to 115 which is a good resting rate for Taylor. She is on constant oxygen and her saturation remains good because of it. I'll feel better, though, when the act of breathing does not cause so much pain that she's forced to utter these unconscious wails. I don't think sleep is in my forecast.
I hope she stabilizes tomorrow. The tube will remain until the fluid goes away. I can't tell if they'll release us upstairs before then. The good news is that her fevers have stopped (at least for now). If her breathing problems resolve and her fevers stay away, there's no reason we shouldn't be able to go home before her next chemo a week from Friday. In the meantime, we are await the dawn of day 35 on this hospital stay, now only hours away.
Update from Keith: September 15th, 2008
Today was Taylor's 33rd day in the hospital on this trip. It was a bad day. She is very sick.
Taylor has been feverish since last Tuesday. It comes and it goes. She's on a number of antibiotics and an anti-fungal but nothing seems to curb her fever.
Her fever consumes platelets voraciously. She has received platelets four times in the last four days. It started on Friday when she threw up blood. There was considerable concern about internal bleeding on Friday because her blood pressure had dropped through the night. Turns out the sores in her mouth and throat were bleeding and it went into her stomach which caused her nausea and led to her throwing up. Lack of platelets caused the bleeding from the same sores that have troubled her since she began radiation.
As the weekend progressed, it became clear that she had something in her lungs. An x-ray and then a CT scan confirmed the presence of pneumonia as well as considerable fluid. At this point her right lung is not functional.
Notwithstanding the lack of platelets, her blood is not clotting properly. Her liver is working abnormally. Her belly is starting to fill with fluid.
Today they had hoped to do a quick surgery that would have them place a tube/wire in her lungs and remove some of the fluid to test it to determine the type of infection. Her poor clotting prevented this.
As the day went on, she grew progressively worse. Virtually every service in the hospital seems to be calling on her: infectious diseases for her infections; oncology (of course) for her cancer, general pediatrics for her regular care, pulmonology for her breathing issues; anesthesia for pain management and the possibility of a surgical procedure; ICU to determine whether she should move there; and I can't remember the others. Tomorrow, ENT will be added to the list as she has an ear infection.
Taylor's breathing grew worse through the afternoon. She spent the time in a breathless sleep--at times breathing faster than one breath per second. As the parade of doctors treating her increased, the concern grew more dire. Her belly grew more distended throughout the day as the fluids in her body increased. Taylor used virtually every minute of her assigned nurse's time today, to the detriment of other patients. That's OK with me. T's my priority.
Late this afternoon the decision was made to transfer her to the Pediatric Intensive Care Unit (PICU). She will have one on one nursing care in the PICU. They are going to try and reduce her fluids to see if it helps. Hematology, Oncology and Pulmonology would all like the PICU to take a sample of her lung fluid either through a chest tube or with a long needle and syringe. Her antibiotics will continue.
After getting down to the PICU she seemed to improve markedly. She was alert and her breathing slowed to a more pedestrian one breath per 2 seconds. Still not great but maybe not bad with only one lung available. The doctors down there saw that and may hold off on the chest tube or the lung puncture. They'll assess as the night passes.
Taylor's white cell counts should rebound soon. That might make a big difference. In the meantime, no one is quite sure what infections she has, why her liver function is abnormally poor or any of a number of things. There are a lot of possible causes, but no definite ones. The doctors are exploring every possibility.
It's too early to tell if this will affect future courses of chemo. There's a possibility that the next cycle will only be a half dose. Her body clearly cannot take much more. Death by chemo is no better an outcome than death by cancer. Both are unacceptable.
I'm hopeful that things will turn around tonight and we'll be out of the PICU tomorrow. That's far better than things looked at 5:00 this evening when a chest tube and intubation for breathing seemed inevitable. It's no fun to watch Taylor when she is so sick. Even getting up to the bathroom is an uncomfortable chore. I don't know how she does it.
I hope to have happier news soon.
(Editor's note - Kristin sent an update last week that I have yet to post...many apologies. It will be up soon.)
Update from Kristin: September 3rd, 2008
As somebody said to me a few weeks ago, "all we can expect is the unexpected!" That has proven to be true. We are still in the hospital - tomorrow will be three weeks. We had the g-tube placed a week ago today. They still have not been able to use it, though, because Taylor's bowels "went to sleep" after the surgery. We were told that the g-tube would drain for a day or two and then they would clamp it off, wait a day, and then hopefully start feeds. That has not happened.
The day following the surgery, Taylor was extremely uncomfortable. Her heart rate was in the 140's and she looked so uneasy. She would not talk, and she did not even want to watch tv! I think she was very nauseous and the pain control was inadequate the first day or two. Eventually, we were able to get the pain under control and she started coming around a bit in the next day or two. However, her tube was still draining a nasty green bile and as of today, the surgeons still are not happy with the color and volume of the drainage from her stomach. They want to allow her another day to drain before we try to clamp off the tube.
Another issue which we were facing up until yesterday was a serious bout of constipation. She had not gone to the bathroom since August 20th! She didn't say she felt like she needed to go and she has been on iv nutrition so we weren't certain what we should expect. But the doctors were quite concerned and said that her bowels were quiet and that even without food, they should still be moving. They sent her for an x-ray of her stomach and decided that they needed to decreases the amount of dilaudid (the narcotic) that she was receiving.
Yesterday, with much celebration, she went to the bathroom. She probably hasn't seen this much celebration over a trip to the bathroom since she was potty trained! And really, since she started going to the bathroom, she hasn't stopped. We are always facing extremes! (I look forward to the day when Taylor is a teenager and she can look back and read this blog and be completely embarrassed at the information which we share with all of you!)
Another issue that we are anxious about it is when she can have her next chemo treatment. She was due last Friday. The original plan was for surgery Wednesday, chemo Friday, and home on Saturday. We had to adjust that quite a bit. In fact, the surgeons want us to wait three weeks for chemo! This seems to be pretty humorous to the hem/onc doctors around here because, as the attending said, they do craniotomies and still do chemo within two weeks, so a little g-tube is nothing to them! BUT they want to be respectful of the surgeons and have repeatedly asked why they are suggesting three weeks but they have not been provided with a response yet. So we will continue to wait and read books and do crafts and play games until we can proceed. I try to remind myself that even though we would rather be at home, it is nice to have this time to just sit and spend time with Taylor when she isn't feeling too sick and miserable and try to enjoy our time together.
The only other issue that we are facing is that they are trying to wean her from the dilaudid. She was receiving .16 mg every hour from the pump and she could push a button and get another .1 mg every six minutes. She spiked a little fever two days ago and was a little uncomfortable and pushed her button 14 times that day. I asked the resident how much more pain medication she was receiving compared to the maintenance dose she gets at home. After careful calculations, they discovered that she was getting over seven times her usual dose. Wow! No wonder she was so mellow for so long, she was stoned out of her mind! So...they have taken away the .16 mg every hour and now she has to push the button when she needs anything and she can do that every half hour.
I was a little concerned at the drastic reduction because we had been through a morphine withdrawal before and it wasn't fun. Her nana stayed with her last night and was very diligent about being certain that she didn't become too uncomfortable and she didn't complain of too much pain. However, she hardly slept at all and was really fidgeting this morning when I arrived but she refused the button when we offered it to her. After talking with the doctors, we agreed that as long as she isn't in pain and isn't too nauseous, we will tolerate a little agitation because we certainly don't want her taking all those narcotics if she doesn't need them.
She is also having a hardtime resting because she has a very loud roommate (nice, but loud) and she is refusing to take any benadryl or do anything to make herself more comfortable.
It has been a very long three weeks. Charlie has been on vacation the whole time and is tired of the unpredictability and misses Mommy and Daddy. Today was his first day back at school and it was sad to drop him off this morning and realize that I hadn't been able to enjoy much time with him on his break. He is moving into the four year old class and isn't sure what to make of that and then when I told him that I wouldn't be picking him up today because I would be spending the night at the hospital, he got very sad.
Keith has been fighting a bad cold so was banned from the hospital for a while so I had to be at the hospital even more often and Charlie doesn't really understand any of that. But as one of my friends pointed out, Charlie probably will not remember most of this time, amazingly. It will all be a blur in his memory.
Mayfield resumes classes tomorrow and Taylor is disappointed to be missing that because she loves Mayfield. She worked on a collage to introduce herself to her new kindergarten classmates so that has kept her busy. If things work out as we hope, we will get chemo sometime in the next few days and then we can return home. But as Taylor pointed out yesterday, she always gets a fever shortly after chemo which sends her into the dreaded emergency room. Her solution was to just to stay here until then so we could skip the whole emergency room thing. At least she doesn't hate it here that much.
