HOME! November 22nd, 2008

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.