Taylor is home...with her new puppy, as promised! Hooray! Go T!
Update from Kristin: November 10, 2008
They casted Taylor's legs today so that her tendons would start to stretch. She opted for pink and purple. We continue to think of new ways to torture the poor girl.
(Kristin provided this additional information re: the casts: "There might be two reasons why her tendons have "shortened." One is the Vincristine, a chemo that causes nerve damage, and as a result causes a "drop foot." Taylor had that for a while. Her ankles were weak and when she walked she would stomp instead of rotating the ankle. The most likely cause of the tendon issue, though, is lying in bed for a long time. Most people point their toes when they lie in bed. When the toe is pointed, the tendon in the back of the leg gets smaller. After many months like that, it stops stretching to its full length so it gets tight. That is why Taylor needs the cast so that her ankle is held in place and the tendon stretches to its full length in the back. ")
Update from Keith: November 5th, 2008
An end and a beginning. That could sum up tonight's election. It also describes Taylor's treatment.
Taylor's chemotherapy has come to an abrupt end. As even the half dose posed problems for her liver, she will have no more chemo. Her body simply cannot take it. Both Kris and I are relieved, although we will wonder for many months to come whether she received enough. There's no simple way to tell.
The end of chemo, unfortunately, does not signify the end of hospital visits. Taylor has been in the hospital since last Thursday night and will probably be there for three more weeks (possibly including Thanksgiving). Infection wracks her body. Her ear infection has bone involvement and requires 3 weeks of intravenous antibiotics. Although her fever has come down from last Friday's 106.5, she continues to spike temperatures. They will start her on anti-fungals tomorrow just to be safe.
Taylor remains on 4 East. It is strange to be at the hospital but not on 4 west where we have come to know all of the nurses. It's a little like being in one's hometown but at someone else's house. We hope she will never again be on 4 west; with the completion of chemo, there is no foreseeable reason to go back. The current plan is to stabilize her infection and then send her up to 6 north where she will have 3 hours of rehab each day. The rehab should help with her walking and her speech and get her back on the road to recovery.
That is the beginning. This is the beginning of the rest of Taylor's life. Her post-cancer life (we hope). She has many things left to overcome.
I recall that after her radiation finished, I remembered Churchill's quote that El Alamein was the end of the beginning, rather than the beginning of the end. I think, now, the beginning of the end has arrived--although the end will be long and arduous. Thus, again, an end and a beginning.
Another beginning: Kristin is pregnant! As with nearly everything that has happened this year, it was not part of our plan, but it is a much happier development than the other surprises we have confronted. The baby is due in early May 2009.
I'm glad the baby will never see Taylor suffer the way she has (and continues to) this year. I hope that it will make Taylor an even better big sister. I often overreach trying to justify what Taylor has gone through. Maybe it will make her better in some ways--even many ways--but I cannot fail to think that such improvement came at an all too expensive cost.
And although the end may have begun, we will continue to blog. Taylor remains in the hospital, in any event. She will have years of follow-up scans to come. Her infection may require surgery. She will need some surgery regardless to remove scar tissue from her nasal passages. Maybe my declaration of an end begun is too optimistic; maybe cancer has no end.
A patient that received radiation around the same time as Taylor (and whose mother used to talk frequently with Kris) is back on 4 west. We do not know the details but the signs are ominous. It is a grim reminder of an end we hope we've avoided. (I hope) the beginning of that end is a lifetime away.
Update from Keith: November 2nd, 2008
Taylor missed Halloween. She had really been looking forward to it, but she developed a fever at 2 AM on Halloween morning. She's been at the hospital since.
It looks like her VOD is back (the liver problems she keeps suffering). She's had some issue today--at one point ICU came down to assess whether she should go there--but she seems to be better now. We'll probably have a week or so of miserable time, but hopefully she'll get better before next weekend.
In the meantime, the only bed for her was here on 4 east, on the opposite wing from where she is usually housed. We don't know the nurses as well here, but at least it's a break from the usual hospital drudgery. It somehow seems less miserable in a new place.
I think Taylor will be here for a while, but we'll see. They are going to transfuse her tonight and see if her blood pressure improves.
In the middle of writing this last sentence, Taylor threw up again. The nurse just took her temperature and it was 41.4 Celsius. That's 106.5 Fahrenheit. 106.5 might be a good number for an FM radio station; it's not a good number for a person's temperature. The nurse will summon the doctors. I hope this isn't a sign of worse to come.
Update from Keith: October 30th, 2008
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 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.
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