WELCOME WILL!

Taylor and Charlie

are pleased to announce

the arrival of their baby brother

WILLIAM ANTHONY THORELL

"Will"

May 5th, 2009, 8:00am

7lbs, 8oz

Update from Keith: March 27th, 2009

Over the last four months, I have sat down many times to update Taylor's blog. Each time, a flood of agonizing memories from last year prevented me from continuing. After a while, I began to put it off; it was a way to avoid bad memories. Worse than the memories are the emotions from those timeless days and nights in the hospital. I can still feel them when I think back to that time. It was not a happy time.

I recognize, though, that I have let down all of the readers of Taylor's blog. For that, I apologize. I will now update the last four months.

When last I left off, Taylor returned home from the hospital on my birthday. It was truly the best birthday present I ever had. She spent the remaining weeks in November still in a cast and beginning to re-acclimate to life at home after spending nearly all of the past 3+ months in the hospital.

In mid-December, I received a call at the office on a Friday evening. It was Kris. Taylor had a fever. At first, I was annoyed. I was already starting to transition mentally to Taylor not being sick. What would a fever matter since she was no longer neutrapenic? It was Friday night. I had no interest in going to the Emergency department at CHLA on Friday night (of course, one common theme of the blog is my lack of interest in ever going to the emergency room--Friday night or otherwise).

Kris and I discussed not doing anything about Taylor's fever. Maybe it was transitory and would be gone later. Who wants to go to the emergency room if the fever doesn't even last? Maybe we could just let her sleep and take her to the hospital Saturday morning if the fever remained. We also worried that bringing her to the hospital so close to Christmas would force her to spend the holiday in the hospital.

Fortunately, reason vanquished convenience. I came home from the office, picked up Taylor and Kris, and headed for the hospital. It may have saved Taylor's life.

When we got to the emergency department and answered all of their ridiculous questions about Taylor's history, her blood pressure began to crash. Pretty soon, the staffing in her room in the emergency department went from one nurse peeking in on us periodically to having three nurses and some doctors in there constantly. At one point her blood pressure was 70 over 19. I don't remember it getting lower than that, but it didn't rise appreciably, either. To boost her blood pressure, the nurses were literally squeezing bags of fluids into Taylor's port as fast as possible. Nothing seemed to work. Finally, Taylor was sent back to the PICU. At least that's better than the Emergency Department (they have special rooms with beds for parents).

I'm sure that for most parents the ICU is a frightening place. For some kids, it is the last place they go in the hospital. I remember the fear I felt the first time Taylor went there. But, as she came and went and had subsequent visits, I began to realize that as sick as Taylor was, she was often the healthiest kid in the PICU. She would go from being the sickest kid in whichever ward she came from (usually 4W, but on this occasion the Emergency Department), to the most well kid. Somehow, trips to the PICU became oddly comforting as Taylor was no longer the sickest kid around. I felt like that on that December night when we brought her up to PICU. I knew they would have the answers and would be able to monitor her closely enough to ensure she got better.

Taylor turned out to have an infection. She had been colonized with Pseudomonas when she was neutrapenic weeks before and it never entirely went away. Apparently it built up again and she got a fever and then her blood pressure crashed. All from the infection.

Taylor remained in the PICU for a couple of days and was released upstairs to the fifth floor. For the first time in months, Taylor had a roommate. Recall that she had picked up a Vanco-resistant bug at some point. The hospital isolates all such patients to keep it from spreading. This time, there was another kid with a Vanco-resistant bug, so Taylor got to be her roommate. I had forgotten how miserable it can be to sleep in those convertible chairs in the hospital. That trip reminded me. Taylor received IV antibiotics for about 10 days and was discharged to come home.

Taylor stayed home for a week or so and was back in the hospital. Same problem. She had a fever and it was from a pseudomonas infection. She needed more IV antibiotics. At least she spent Christmas at home.

Taylor needed a long course of antibiotics. In the past, we always resisted giving her IV drugs at home. We worried about infection or doing something wrong. It's like when they say, "Don't try this at home," on TV, "we're trained professionals." We felt the trained professionals should administer her IV drugs at the hospital. This time, though, they wanted the antibiotics to take weeks. It made no sense to leave her in the hospital for weeks if we could do it at home. So, she was discharged after a couple of days and we continued her antibiotics regimen at home, delivering a dose over a 30 minute period every 8 hours.

New Year's Day was especially welcome this year. Kris and I had our 20 year anniversary (from when we first started dating). More importantly, Taylor stayed home from the hospital. She had an MRI the day after USC pummelled Penn State in the Rose Bowl. The MRI results were just fine. She still has a small residual mass (this was expected) but as long as it does not grow, everything should be fine.

We (and when I say we, I mean Kris) adjusted to the IV antibiotics regimen. The drug came in huge syringe-like tubes with small, narrow tubing coming out of it that connected to Taylor's port (which remain accessed). We were provided a syringe pump that would pump the drug through over 30 minutes. Only it rarely seemed to work. The damn thing would beep and stop working every 30 seconds some times. Other times, it would go through all 30 minutes without stopping at all. It drove us (and again by "us," I mean Kris) crazy with its unpredictability. Eventually we (Kris) recognized a correlation between the temperature of the antibiotic and the pump's ability to function properly. The antibiotic needed to be stored in the refrigerator, making it fairly cold. If we let it sit out for about a half-hour or so before pumping it into Taylor, the pump seemed to work much better. It certainly wasn't as easy as having nurses give the drugs in the hospital, but it allowed Taylor to be home. That made it well worth the effort.

Also in the new year, Taylor resumed regular school attendance. Taylor's stamina is still limited but she can manage most of school day. So, she gets to school around 10 am and stays until school finishes just before three. Taylor is so happy to be back at school! She loves her school and has made new friends. She is going back to kindergarten rather than moving to first grade. As she missed most of the school year last year, it made more sense to have her go back to kindergarten. Kris tapes Taylor's g-tube to her body so it does not get in her way at school. In fact, the other kids probably have no idea that she has one. Being back at school gives her a chance to be a regular kid again. We're ecstatic that she has been able to do so.

Taylor still has her g-tube and gets the majority of her nutrition through it (usually in the late afternoons and overnight). But, Taylor has also started to eat again! After almost a year of not eating, Taylor now eats again. She tends to chew her food for a very long time. She doesn't always swallow her food (preferring to spit it out on a napkin). In the beginning, she did not seem to swallow anything. Now, I would say that she swallows more than she spits out. We are extremely proud of how hard Taylor is trying to eat food again.

We had an occupational therapist evaluate Taylor's eating. We were concerned that her failure to swallow was the sign of medical problems. The therapist's conclusion, though, is that Taylor can eat and swallow with no problem. Her experiences over the last year have simply made swallowing a difficult mental proposition. Time and practice will teach Taylor that she can swallow food without throwing up or feeling pain. As long as she keeps trying as hard as she has, it will come.

Taylor received IV antibiotics until mid-February. By then she had received enough to hopefully deal with the pseudomonas. She needed to be off then because we were off--to Disneyworld, courtesy of the Make-a-Wish foundation.

Taylor had wished for Disneyworld last year when she was still in treatment. We wanted to go at a time when she could enjoy it so we asked to do it this year when we knew (hoped) she'd be feeling better. So, the four of us went to Disneyworld for the week of President's Day.

It was a fantastic trip. We stayed (at Taylor's request) at Disney's Polynesian Resort. We went to one or more of the Disneyworld parks all but one day of the six we spent in Orlando. We had a pass which allowed us to use the fastpass entrance at each ride. Thus, we rarely waited in any significant lines. Taylor was too scared to ride Pirates of the Caribbean, the Haunted Mansion, or the Twilight Zone Tower of Terror, but Charlie agreed to ride each of those with me (he liked Pirates, he liked the Haunted House, he's never going on the Tower of Terror again). Taylor did go on Space Mountain and Big Thunder Mountain (she liked Big Thunder Mountain better). The kids' favorite ride seemed to be Test Track at Epcot. They had a lot of fun on that ride each of the many times we went on it.

Poor Kris could not participate in nearly any of the rides. Her pregnancy is 32 weeks now, then it was in the mid-20's (the baby is due on May 5 as Kristin's doctor has scheduled her for a C-section that day). Pretty much any of the fun rides have warnings that pregnant women should not ride. So, Kris had to wait around for us over and over and over again. She never complained about it.

Two weeks after we came back home, we went to Cal Poly Pomona where the Chi Omega sorority chapter was putting on a philanthropic event benefiting Make-a-Wish and specifically sponsoring Taylor's trip. Taylor got to meet the girls in the chapter and we were able to thank them for their efforts. Taylor enjoys being the center of attention, so I think she liked it.

Earlier this week, Taylor threw up at school and complained of head pain. It is the first incident she's had there since coming back. I think it probably scared everyone. She stayed home for a day and was back at school again. All seems fine again.

Complaints of head pain cause us significant worry. That's how this all started last year when we thought it was just a sinus infection. Her head pain from earlier this week went away, but my heart skips a beat every time she complains of it. I suppose it will for years to come.

Taylor will have another MRI on April 7. I'm sure I am leaving out some events from the last few months, but I covered the basics. The most important thing is that Taylor is happy, home, and healthy (or at least as healthy as she can be under the circumstances). Her speech is still difficult to understand, but probably will remain so until she has surgery to correct some problems in her mouth. Her walking is not perfect but it is much better than it was. Her eating continues to improve. Right now, things seem pretty great.

Update: March 12th, 2009

I wanted to write a mini update for all of those people near and far who have been following Taylor's story. We are sorry to have been so...quiet...these past few months, but in this case, no news is good news!

Taylor is doing very well. Aside from a couple of early trips to the ICU from infections and viruses, Taylor has been home and happy since November! People often ask if she is "in remission," but that is not a term the medical world will use until she is free of cancer for 5 years. Right now she is considered to be "out of treatment."  She will have a scan (MRI of her head and Xrays of her chest) on April 7th to determine whether or not all of the cancerous cells of the tumor have responded to her treatment.  There is a mass of scar tissue in her throat at the site of the tumor, and the Drs. believe this to be just that: scar tissue. The scan will confirm this. She will continue to have these scans every 3 months for the next 2 years. If at any time they find signs of cancerous cells, they would restart treatment with different medicines to ensure the cells don't survive.  

Taylor started going back to Kindergarten for several hours each day at Mayfield in January. She is really enjoying being out and about and back at school. The community at MJS has been so wonderful this past year the the school administration has worked with Keith and Kristin with open arms and hearts. 

At the end of February, the whole family traveled to Florida for Taylor's Make-A-Wish trip to Disney World. From the sounds of it, the Make-A-Wish foundation really does a fantastic job for the families and children involved.  Kristin is planning on getting me the pictures so that I can post them soon. 

Additionally, Keith will be writing a real update, correcting any misinformation I have undoubtedly provided you here today.  Hopefully this will happen before mid-May when the Thorell's will welcome the new baby boy to their family...

In case I haven't said it enough, which I truly don't think is possible, thank you again to everyone who provided amazing support for the family over the past year+... the outpouring of prayers, thoughts, wishes and MEALS was amazing and touching. Thank you thank you. 

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.

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.

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.

Update from Keith: August 23rd, 2008

Taylor is still in the hospital. She's been here for 9 days now. She will almost surely be here through her next chemo which is a week from now (8/29 is the scheduled date) so this will be her longest hospital stay since March.

The good news: Taylor's fever has finally gone. It broke on Tuesday, was spotty for the next day after that but she hasn't had one since Wednesday. She is no longer on anti-fungals and the doctors have taken her off the most powerful of the antibiotics. Thus, they were able to take out the extra IV they put in Taylor's arm on Saturday night to handle all of the meds, food, and blood products she needed. She's back to just geting everything through her port.

The not-so-good news: They imaged Taylor's tumor for the first time in months this week. She had a CT scan of her head neck and chest, with and without contrast. A resident delivered the news: the radiologist's report shows Taylor's tumor is shrinking except on the left where it is getting larger. This was devastating news. After all we've put Taylor through, for her tumor to continue to grow is unthinkable. Later in the day, her oncologist came to see us and told us that he looked at the scans himself and feels that the radiologist was either wrong or dictated the report wrong and that in his opinion the tumor is clearly shrinking and the scans are extremely positive. Needless to say, this version sounded much better and we're going with it for now although we will seek a second opinion once Taylor is discharged, just to be safe.

We spent much of the latter part of the week in consultation with various doctors and nurses about what to do concerning Taylor's feeding tube. Since she threw it up last week, she has been geting feeds intravenously which is a temporary solution. We need something more permanent before taking her home so we can deliver her meds. The obvious answer is just to give her another NG tube, but we prefer just a G tube which goes from her abdomen into her stomach.

We've thought for a long time that we would go with a G tube once she finished her treatments. For one, she'll no longer have a tube taped to her face which was a source of self-consiousness for her. It was also a source of constant worry for us as it sometimes caught on things and bulged out whenever she threw up (which continues to be often). Taylor is wholeheartedly behind the idea of not having an NG tube anymore.

Taylor's oncologist agreed that a G tube is the way to go. Other doctors aren't so sure. She'll need surgery and there was some question if she would have to undergo a number of studies before the surgeons would agree to do it. They've evaluated her a couple of times now, and we are told that surgery will do it without subjecting her to whatever studies they would otherwise want. If that changes or any problems come up, Taylor will get another NG tube instead. Right now, the G tube surgery is scheduled for Wednesday so hopefully she'll hold up until then.

The last week has felt like it did in the dark days of January, February and March. Taylor's been mostly sick and entirely in the hospital. She's now better but we'll still be here until the next chemo (she has to stay here until she gets a feeding tube and since that's not until Wednesday, she'll have to recover here until that Friday's chemo). It's been a hard week and next week will probably be little better. At least she'll hopefully feel better.

Update from Keith: August 17th, 2008

Taylor is a very sick little girl. She has been in the hospital since early Thursday morning. Last night (Saturday night; technically Sunday morning), Taylor was transferred to the Pediatric Intensive Care Unit (PICU). When we got there, Taylor turned to us and said, "I'm scared."

It's a scary place. For some patients, the PICU represents the last stage of a declining life. Taylor arrived with an extremely elevated heart rate, one lung full of infection, and a fever so high it maxed out the thermometers the hospital uses. We were scared, too.

Taylor's fever began at 4 am on Thursday morning. I had to fly to Phoenix later that day, so my Dad went down with Kris to the Emergency Department. They spent most of the next 12 hours there. Taylor's fever remained strong despite doses of antibiotics. This is abnormal for Taylor; generally her fever recedes not long after she gets antibiotics and fluids. Nothing seemed to work this time.

That night, my Mom stayed with Taylor. Early the next morning, Taylor threw up violently. So violently that she threw up her NG tube. This is a significant problem. Not only was the NG tube the only source for Taylor's nutrition, but it is the only way to deliver oral medicines to her. With her fever continuing to rage, she needs Tylenol through her tube. That has not been an option since Friday morning.

Taylor's fever consumes her platelets voraciously. Her platelets have been far too low to attempt surgery for placement of a new tube. I can't say when it will be replaced. For now she gets nutrition intravenously. Intravenous feeds are a long term problem but a short term solution. Hopefully her platelets will improve and they can replace her tube this week.

After her fever continued unabated Friday, the doctors took a chest x-ray on Saturday. I spent most of Saturday with her. For most of the day her fever exceeded their ability to measure it; the thermometers they use to record her vitals only go to 40.5 (104.9) and it recorded that level for her nearly every time. We used cold packs and cold washcloths to try and cool her off. She suffered chills, though, which made that difficult. While her trunk and head are burning up her extremities are cold to the touch. Her feet, especially, have been cold. They gave her medicine to try and reduce her chills. It worked intermittently.

She went back on Dilaudid for her pain starting Friday. She has the ability to push a button every 30 minutes which will deliver her a dose of Dilaudid. She's clearly uncomfortable all of the time because of her fever, but the Dilaudid has seemed to help her head pain.

When the chest x-ray came back on Friday night it showed one lung with considerable infection. Her platelets are way too low for anyone to send a tube into her lungs to identify what infects her. They believe it to be fungal so they have started her on anti-fungals. These fun drugs have symptoms not unlike chemo. Following that diagnosis, it became clear that she would need anti-fungals, red blood cells (to help her infected lung carry oxygen around her body), platelets, antibiotics, and close monitoring because of her fever. The sheer number of nurses needed to care for Taylor (she had three for most of the evening Saturday), combined with how sick she was necessitated the trip to the PICU.

In the PICU T developed diarrhea (who knew that was possible even without anything going through her gastro-intestinal tract). This just added further insult to injury.

Taylor turned a bit in the PICU, though. Enough that they sent her back upstairs earlier today. She's even had a few readings that are not considered feverish. Her heart rate has slowed from a resting rate in the 160's to the 110's where Taylor has often been during her cancer. She is still uncomfortable. This has been really hard for her.

Both Kris and I spent Saturday night at the hospital. I stayed by Taylor's bedside; Kris went to a parent room and caught 3 and a half hours of sleep. I slept during the day and went back to the hospital. Kris is spending the night there again tonight.

Poor Charlie has been lost in this. It breaks my heart. Every time I come home I get huge hugs. When I look to leave, he clings close by hoping I'll stay. I'm sure it's even worse for Kris who's Charlie's favorite. He's off of pre-school the rest of the month. It's going to be hard for him.

I have no idea how long Taylor will be in the hospital. I've heard 10 days is a possibility. That would take us virtually to the next scheduled chemo. I just want her to get better.

Everything had seemed to be going so well. This is a terrible reminder of what can happen. Everything feels like it did back in January, February, March. Hopefully they are right and this is a fungus which the drugs, along with her white blood cells (which should rebound soon), will resolve. I can't consider the alternatives.

Update from Keith: August 7th, 2008

I purposely waited a week to update the blog. I didn't want to post another update when I was still cranky about an experience in the Emergency Department. No more "circle of hell" blasts or poking fun at doctors. Unfortunately, waiting a week hasn't done the trick. I am still cranky.

Last Wednesday Taylor got another fever. She's had a lot of fevers this cycle. The good news this time was that she actually demonstrated an ability to get a fever before 11:00 at night. Even better, it was 6:15 when Kris discovered Taylor's fever. She called me at work and I agreed to meet them at the hospital. Thus began another Emergency Department odyssey.

Discovering Taylor's fever so early in the evening seemed a really good thing. Whether she needed to be admitted or could come home, things seemed teed up just right for us to be able to get a decent night's sleep. If she would be admitted, hopefully we could accomplish that early, by 10 or so, and one of us could spend the night with Taylor and sleep in her room upstairs and the other could go home. Likewise, if she was sent home, hopefully they could treat her with a course of antibiotics and discharge us before 11 so we could be in bed by midnight. Either way it seemed like events were timed perfectly to allow us a good night sleep. We were so confident, we didn't even bother with dinner, figuring we would have time to eat later. I was so confident that things would unfold smoothly for once that it bordered on hubris.

I arrived at the hospital just before 7:30. My Dad drove Taylor and Kris down and I met them in the hospital driveway. I lifted Taylor from her seat, Kris lugged our stuff out of the back of the car and we entered the hospital. My Dad went back home to pack for a trip he and my Mom were taking the next day. Charlie spent the night with my brother and sister-in-law.

Things went pretty smoothly at first. We quickly gained access to the triage area. Having been there twice in the last week or so, the triage nurse recognized us and immediately evaluated Taylor's condition (ahead of a few other kids in line). Taylor's fever raged. I think it was in the high 39's (103 something). That didn't seem good. The triage nurse finished processing Taylor, administered some Tylenol to quell her fever, and admitted us to the Emergency Department.

I immediately recognized the room she was assigned. I had spent 30 hours or so with Taylor in that room back in February or March. That was a miserable trip where we were stuck waiting for a bed upstairs and Taylor just felt awful. There's no parent beds (or even comfortable chairs) in that room, so I caught fitful minutes of sleep when I could. I remember trying to watch a DVD on the TV in the room and it kept stopping after each 30 minutes or so. At least now there was a sign in the room explaining why: "This DVD player overheats halfway through any movie. Please turn off the TV, wait a half-hour and resume playing to finish your movie." (The sign would be more accurate if it said that the DVD player overheats every 20 minutes, but whatever). Being back in this room was no happy reunion.

Not long after we got settled, the resident came in. She was very nice. She remembered having seen Taylor the Thursday before (when my Dad and Kris brought Taylor down and she was admitted for the weekend). That made things a lot easier. She took a history without asking anything about Kristin's pregnancy or Taylor's birth (this was a real breakthrough; I'm starting to think they read the blog). I explained that whether she would be admitted or treated and released, I wanted the decision to be made sooner rather than later for the comfort of all of us, including Taylor. The doctor agreed with that plan and left. She ordered a cbc, some antibiotics and some fluids for T.

The first step in the treatment plan involved the nurse accessing Taylor's port. Because Taylor had just been released from the hospital on Monday night (2 nights before), her port proved difficult to access. (For whatever reason the nurses always seem to have more trouble accessing her port if she has recently been de-accessed; I don't know if there is scar tissue that forms or some other explanation but this has been our experience). The nurse got the needle in, was sure it was in the right place, but there was no "return," i.e. no blood came flooding out as he pulled out the stopper in the syringe. His solution was to rotate the needle in Taylor's chest and keep trying to get a return. He kept at this solution for 5 minutes or more despite Taylor's crying and discomfort. Finally, we convinced him that he would have to pull it out and try again. He agreed and called another nurse in for the second try.

The second try worked. Taylor was very brave and hardly flinched even after all of the pain from the first try. She was just relieved to have it finished. It can't be fun to be feverish and have people poking needles in you, twisting them all around, pushing them in and out all the while propping her up and keeping her from getting comfortable. I was really proud that she was so good about the second try.

They took her blood and it came back that her white counts were actually pretty high for her. They had gone from 780 on Monday to 9. To we laymen that sounds like a sharp decrease, but to medical professionals it's a substantial increase. It turns out that in medicine 780=0.78. I continue to contend that medical practitioners create a ridiculous jargon to prevent the rest of us from making meaningful contributions to our care (or the care of our loved ones in this case). Changing around numbers just seems to me another way to accomplish this. The upshot of her new count was that she was not neutrapenic. This meant that they could release her after completing treatment.

Thus, they gave her a course of antibiotics. They also gave her a "bolus" dose (more ridiculous jargon indicating a larger than normal dose; next time I go to McDonald's I'm going to try ordering a bolus Diet Coke and see what happens) of fluids. Typically when Taylor is in the hospital she gets IV saline (actually I think it's potassium chloride now that I think of it but it's some type of clear fluids that comes in a 800 cc bag) at a rate of between 60 or 70 cc's per hour (this is true if she is not on her feeds; if she is on her feeds she gets hydration from that as well so they turn down the fluids). The bolus they gave her was 400 cc's per hour and they let it run the entire hour.

By the time she finished the bolus and the antibiotics, it was around 11:00. We were ready to go. All that remained was taking Taylor's vitals, getting the doctor to order the discharge, and de-accessing her port. The nurse came in to take her vitals so the doctor could order the discharge. Taylor's blood pressure was low. Moreover, her heart rate was elevated (it was in the 120's) and her fever was back after being gone for a few hours. These were worrisome signs.

In retrospect, I should have spoken up at this time and demanded admission. I didn't. We were focused on getting home. It was late. The path of least resistance was to listen to the doctor's orders and follow them. I stumbled down that path.

The doctor took a look at Taylor's numbers and ordered another bolus. Keep in mind that this did not happen instantaneously. There are a lot of kids in the ED on any given night. Some have traumatic injuries which obviously take precedence. By the time the nurse learned that the doctor ordered another bolus and actually started it going through T's veins, it was midnight, or maybe later. We kept the lights off in the room as Taylor slept on the exam table (Kris knows by now to bring a pillow from home as they lack pillows in those rooms). Kris and I sat in the silent dark as the fluid flooded in to Taylor's veins. I also watched Return of the Jedi in 20 minute bursts (this is all the overheating DVD player would allow). As the hour wound down, I actually ejected the movie from the player and prepared to go home. It was late. At least we could still salvage some sleep from this night.

When the bolus finished we turned off the alarm on the pump and let the nurse know. It took him a while to talk to the doctor. The nurse knew we wanted to leave and he did the best he could. Finally, he took her vitals again to prepare for discharge. Uh-oh.

Taylor's blood pressure was a little better (after all they just pumped in 800 cc's of volume into her veins over the course of a few hours) but her heart continued racing. Her temperature was borderline. The resident came in. She wanted to give Taylor another bolus. By now it was after 2 in the morning. Another bolus sounded ridiculous. I put my foot down and said no way. I told the resident that I didn't think treating her with another bolus was a good idea and that I thought she should be admitted. The resident didn't know what to do. She summoned the attending.

The attending came to see us for the first time that night. He started off saying something to the effect of, "I'm here to convince you why getting another bolus and leaving tonight is the right course of treatment." His arguments essentially were that the bolus would work and she'd be able to go home rather than stay in the hospital.

None of this made sense to me. Is there a class on stubbornness in medical school? The bolus didn't work the first time, didn't work the second time, and now they thought it was some panacea the third time? I didn't have to go to Harvard to figure out that if it didn't solve the problem the first two times, it wasn't going to work the third.

I'm trying to get better about calling them names or bad-mouthing the ED. I have come to realize that the ED at CHLA is a fabulous place to bring your child if he or she has a broken bone, or a traumatic cut, or for any of the things that parents want to bring their kids to an ER. It is not a good place to bring your kid if she has rhabdomyosarcoma.

Wasn't Einstein's definition of insanity, doing the same thing over and over again and expecting different results? There, I didn't say it; Einstein did. Einstein called the ED doctors insane. Treating her with a third bolus was insane (again this is Einstein saying this, not me).

I had a spirited discussion with the attending wherein I indicated that I thought Taylor was better served by admission to the hospital. She could move upstairs to 4W where the nurse and doctors are used to treating kids who present her symptoms and who have similar problems. Moreover, they clearly felt that she couldn't leave the hospital yet (her heart was racing) so all would be better off if she spent the night upstairs where they could monitor her carefully and ensure that she was OK. I also told him that I thought treating her with an additional bolus was ridiculous. (I didn't mention what Einstein said about him.)

The attending was in the rather bizarre position of explaining how much better off Taylor would be by not spending time in his hospital (where she spends virtually every weekend anyway). We went back and forth for what seemed like a long time both reiterating the same points: he claiming that a third bolus and discharge was the answer, I maintaining she should be admitted. Finally, I told him that I couldn't admit her myself even though I thought it the best option and that clearly he wasn't going to admit her and I could not make him do so. Therefore, I told him, let's just get on with it.

Kris spoke up then. Earlier in the night they had placed leads on Taylor's chest to monitor her heart and respiration. Since they cited her elevated heart rate as the need for bolus three, Kris felt T's heart should be back on the monitor. The attending agreed. That's when he saw that Taylor's pulse ox was hovering around 90. That's low. Doh! Guess what, she needed to be admitted (who's your daddy, now?).

Still, the wheels turn slow at the hospital. They started bolus number three. The attending was called away and I think too scared to come back and confront me as events had proven me right. Instead, he sent another resident over to take a history to prepare for T being admitted.

While she didn't ask about Taylor's birth experience or Kristin's pregnancy with T (another small victory) her questions were mostly asinine and reflected her failure to read even a sentence of T's file. An example: Her: "She has a regular diet, right?" Me: "If you call Peptamen Jr. through an NG tube a regluar diet then yes." Her: "Oh, I'm asking about the food she eats through her mouth." Me: "She hasn't eaten food through her mouth since January." In fairness, I think she had already heard that I had faced (in the 80's meaning of the word) the attending and she seemed cowed the moment she began talking to me. To me it was just another useless ED Taylor medical history. It's the rhabdomyosarcoma, stupids. (That's Carville talking; again not me).

They also took a chest x-ray (after all, what's a trip to the ED without a chest x-ray). This time it was good that they did; it showed that Taylor might be developing pneumonia in her lungs. This just furthered the need for admitting her.

I finally left just before 5. Taylor and Kris were still in the ED waiting to go upstairs. I confirmed that someone would assist them in transporting upstairs before I left, but I had to go home. I had to get some sleep before work. When I finally went to bed just before 6 I had been awake for 24 hours (it was the same for Kris at the hospital). I spent nine and a half of those hours in the ED. My initial giddiness at discovering Taylor's fever so early had long since vanished. It merely served to subject us to further insanity. (Einstein really should stop that).

The next day the hem/onc doctor who saw Taylor mentioned that treating her with so much fluid probably exacerbated her condition, not helped it. I'm not surprised.

Taylor spent the next few days in the hospital, including last Friday which was Kristin's birthday. Taylor was discharged midday on Saturday, though, so we finally got to spend a weekend (or at least most of a weekend) at home as a family. This week has mostly been good for Taylor. Her mouth is a little worse than usual. The doctor noticed a huge scab at the back of her mouth when she was in on Tuesday. She is throwing up a bit more than usual for a third week, but it seems to be due to mucus in her throat rather than any nausea. Her spirits have been great, though.

Friday is another chemo day. Those are hellish nights. None of us look forward to it. Another child died this week. It's a sobering reminder of the fiendish nature of Taylor's disease.

Update/Retraction :) from Keith: July 25, 2008

So, my better half has convinced me that writing a blog entry on two hours sleep as I did in my last contribution was likely unwise. I admit I was extremely cranky and carried things much too far.

Thus, CHLA is decidedly NOT the "eleventh circle of hell." Of course, there have been bad moments that we've had there: Taylor was diagnosed there and all her sickest moments have been spent there. The reality, though, is that CHLA is much more heaven than hell. The dedicated doctors and nurses who work there are the reasons that Taylor has fought her cancer so successfully. So while I probably tend to air out the negatives rather than the positives in my blog entries (after all this is a welcome form of release to me), be assured that we are thankful every day that Taylor is a CHLA patient and that we would not have it any other way.

Similarly, my blog entry may have made suggested that the Emergency Department doctors are not "thorough" or even "competent." That is, of course, not the case. It is just that Taylor has a specific set of needs and treatments that stem from her disease and she is not the typical ED patient for whom the doctors must reach a diagnosis and treatment plan. Although it is no fun to spend the night in the Emergency Room for anyone, they have always provided Taylor with first-rate care, even if we have sometimes suggested alternate treatments.

I certainly apologize to anyone at CHLA (I've heard no objections, but would certainly understand if some were made) if my last blog entry unfairly characterized the hospital or Taylor's wonderful treatment.

I feel less charitable towards the McDonald's in the hospital, however. I NEEDED that Diet Coke the other night. Not having any soda available whatsoever was the straw that broke my back. While I could have obtained soda from a vending machine in the hospital, it would not have presented me the cold, icy elixir which I sought. I remain cranky with McDonald's.

Kris had hoped to provide her own blog entry backing off my comments in Monday's update. Alas, Taylor developed a fever late last night (11:15, do they ever happen earlier? apparently not) and she accompanied Taylor to the hospital. All of the beds on 4W are occupied so they spent the night in the Emergency Department (a truly awful experience, I can attest). Taylor will be assigned a bed today, although one had not yet materialized as of noon.

Thus, it will be another long weekend in the hospital. Her counts usually do not rebound until Tuesday. So, she'll probably be there until then. It's no fun for her to be cooped up in the hospital for such long stretches of time. No 6 year-old should be stuck with that. Still, this week marked the passage of 6 months since her initial diagnosis and clear progress has been made. As July comes to a close, we really only have 3 or so months of this left. I cannot wait for the treatments to end.

Update from Keith - July 21, 2008

Things have gone so well lately, the train was bound to derail. Last night it did.

Taylor was really great this weekend. She had a lot of energy for a chemo weekend until last night when she crashed a bit. We weren't particularly surprised, though, since she was only 48 hours post-chemo.

Just before we were going to go to bed, at about 11:15 Sunday night, Kris grew concerned about T because she could hear her panting in her sleep. This has been a sign of fever in the past. Sure enough, Taylor spiked a 39.2 (that's about 102.5 Fahrenheit).

So, we put the wheels in motion. Kris called the Hem/Onc fellow on call. The fellowships last a year and the new fellows started 7/1. I think it's possible that we know more about cancer than they do (that's probably a little unfair); certainly we know more about the hospital than they seem to. In any event, there was no basis for us insisting on getting a bed on 4W directly as Taylor was probably not neutrapenic since she had only had chemo 2 days before and it usually takes most of a week for her counts to plummet. Thus, it was back to the Emergency Department; possibly my least favorite place in a hospital where I have suffered through all of my life's worst moments. It's that bad.

The one thing that they do right in the Emergency Department is that they let the cancer kids through to the triage waiting room right away, instead of making them stay out with the rest of the sick kids (and possibly get more infected). As soon as we got there, they let us in to Triage.

I carried Taylor up from the car and it felt to me like she was burning up.

Once in Triage, we waited while the kids in front of us were checked. It was the usual non-emergent sicknesses for which parents seem to bring their kids to the Emergency Room. We waited through a kid with a small rash, and another with a light fever (neither of them were admitted to the Emergency Department; they were treated in Triage) before it was finally Taylor's turn. As always, they weigh her and check her vitals. Her heart was racing--166 (although that's below some of the numbers she put up in the dark days of February and March)--which often signifies infection for her. Her temperature was still high--38.8 this time. The triage nurse gave her some Tylenol for her fever and directed us to the Emergency Department itself.

We probably should have left then. The Tylenol was the last useful thing they did for Taylor.

Shortly after arriving in our spartan ED room, a doctor came in to take her history. This drives me crazy. Her history is in their computer, in their medical files, all over that hospital. I get that it might be a little more efficient for them to just ask each time instead of read it, but the vast majority of the questions seem ridiculously irrelevant. Every single time they ask about how Kris's pregnancy was with Taylor as if some remnant of that event 6 years ago is causing her current fever instead of the cancer they diagnosed 6 months ago. In the entire interview, the only relevant question they ever ask is whether she has any allergies to medication. Never mind that it is all over her file and that they require her to wear a red wrist band which says "Allergy" on it every time she gets there, they still need to ask us each time. Last night the triage nurse noted it first (at least he looked at the file), and then the doctor asked about it, too (meaning she neither read Taylor's computer file nor the paperwork the triage nurse generated some 10 minutes before).

After taking her medical history, the doctor explained that she wanted to do a CBC (no surprise) and a chest X-ray. This is a favorite diagnostic tool in the ED. This is not the first chest X-ray Taylor's been subjected to down there. This time, though, I didn't mind because Taylor has had a deep cough and I was a little worried that there was something in her lungs. After telling us the plan, the doctor was gone.

The next couple of hours went by slowly. The nurse accessed Taylor's port (she didn't throw up this time) and started her on some hydration. She also took the blood for the CBC. Taylor slept much of those two hours. Kris and I just sat there while our chance at sleep slowly ticked away.

Finally, around 3, the doctor (I'll call her Dr. Genius) came back in. And while I'll never know for sure if Dr. Genius mastered the intricate (but irrelevant) facts of Taylor's birth (37 weeks, C-section, breach, Kris had gestational diabetes), I can say with a high degree of confidence that the entire medical history was wasted on her. Why can I say that? Because after two hours of presumably intense study and deliberation to arrive at Taylor's treatment plan, Dr. Genius recommended . . . (wait for it) . . . yes, you guessed it, she recommended treatment with an antibiotic from the same family of drugs that T is allergic to. Two hours it took for this brilliant analysis. I'm starting to think high school shop class is more technically difficult and intellectually rigorous than med school. At least putting in the wrong kind of gas won't kill you.

We thanked the doctor for her bold plan but pointed out the one tiny flaw. The doctor thought about it some more and then decided that she should probably give Taylor an antibiotic she is not allergic to. Discretion, as they say, is the better part of valor.

The chest X-ray still had yet to be completed. Thus, I took Taylor over to radiology a little after 3. You'd think it would have been empty at that time of night. But with X-ray being the ED's favorite diagnostic tool, there were 3 kids in front of us. Thus, we sat down in the waiting room and watched the food network, the channel the TV was broadcasting (this was actually appreciated; while the hospital can do many wondrous, technologically advanced things, they have yet to solve the mystery of how to bring cable to the TV's in the Emergency Department; thus, the beautiful flat screen LCD displays hang on the walls of the ED rooms, largely unused, although you can put a DVD in them). Taylor finally got her chest X-Ray after 15 minutes or so and we went back to the ED.

The nurse assured us that all she needed was for the pharmacy to send up Taylor's antibiotic and she would start her up. Unfortunately, it was a drip, not a push, so we knew in advance it would take 30 minutes or so for her to get the full course of the medicine. I decided to head over to the 24 hour McDonald's in the hospital to get a Diet Coke. At this stage in the night I was a Zombie and icy, bubbly goodness seemed exactly what I needed.

I got to the McDonald's and ordered a large Diet Coke. My mouth watered at the promotional pictures of icy cokes sweating through soda glasses (as if McDonald's served Coke in a glass). I was so caught up in my Diet Coke fantasy that I didn't hear what the cashier said at first: "We don't have Diet Coke." OK, how about a Coke? "No, the soda machine isn't working." Sprite? "No." What about Hi-C? "No." Water, OJ, and coffee was all they had.

Are you f'ing kidding me, I'm thinking. How could they not have a Coke? McDonald's without Coke is like McDonald's without French Fries. It can't happen. Worse, the posters of the icy, sweaty, glassed cokes taunted me. How could they do this to me? Only at CHLA is this possible. Even the McDonald's is part of the eleventh circle of hell which encompasses the rest of the place. I left empty handed and broken hearted. At least Taylor will have started her antibiotic by now, I thought. Maybe we'll get home before 5.

No such luck. When I arrived back at the ED, Taylor still had not started the antibiotic. Maybe the pharmacy was backed up or something, I don't know. Hell, they were probably out looking for Cokes.

Finally, after another 30 minutes, Taylor started her antibiotic at about 4:05. It was 30 long minutes going in. We left the hospital about 4:40. Turns out parking is the same charge from midnight to 4:45 AM as it would be in the middle of the afternoon when people actually want to park there. I parted with $4 dollars and we went home.

At least Taylor slept most of the time at the ED. Kris and I finally hit the sheets about 5:30. Both hours of sleep were wonderful.

Update from Keith: July 20th, 2008

A lot has taken place since my last blog update. I apologize in advance if this is an especially long entry. 

As I suspected on July 4th, Taylor ended up in the hospital through the following Tuesday.  It seemed an excessively long stay, but it was only a blink of an eye compared to her January, February and March stays. 

Taylor held up pretty well after she was finally released from the hospital.  Her release coincided with the rebound of her white cells which meant that she was in a pretty good place when she came home.  That was good, because the last week has been hectic. 

It started on Sunday with a fundraiser for Children's Hospital at which T was the guest of honor.  It was extremely well attended by our friends and family - overwhelmingly so.  In fact, it was much  more than we expected.  For people who attended who may not have seen much of Taylor, her prolonged absence was because she was around the corner playing various games with the other kids (including tag and other games that required her to run).  I was ecstatic because she just seemed like a regular kid.  It has taken so long to feel like that!  I couldn't begin to say how much money was raised, but I know that all of us (and especially Taylor) had a great time and appreciated everyone's attendance.  

Wednesday marked the beginning of our two day trip to Disneyland.  We are forever indebted to a friend (I shall allow her to retain anonymity so that she is not overwhelmed with Disney-related requests) who works for Disney who helped arrange our hotel reservations and more.  We arrived early on Wednesday morning and checked into our hotel.  We wanted to get to the park early so the lines might not be too long.  We walked over to Disneyland and rented a wheelchair for Taylor (her walking is still awkward although she is working on it; the doctors continue to withhold Vincristin because of the neurological effects it has caused, demonstrated by her walking).

Our "Disney friend" had suggested that we go to Customer Relations inside the park and see what arrangements we could make to accommodate Taylor's issues. When we got there we explained that Taylor had cancer (this was probably unnecessary; her bald head and NG tube probably gave that away) and we were not sure about how disabled access worked on some of the rides. The lady looked at Taylor and handed us a pass that she said we should show to the ride operators when we got to each ride.

Well, the pass turned out to essentially allow us to skip the lines. Obviously, that was a huge benefit and much appreciated as we were unsure of Taylor's stamina in some of the lines. The pass, though, ensured that Taylor could get to see each ride that she wanted to.

The first day at Disneyland we had a packed schedule. Our anonymous "Disney friend" had helped arrange for us to see the Jedi Training Academy show at 11:30 in the morning and had lined up special seating for the Fantasmic show at 9:00 at night.

When we got to Disneyland we rode a few rides first before making our way over for the Jedi Training Academy show. In this show, children are picked from the audience to receive Jedi light-saber training that culminates in a fight against Darth Vader. Taylor was one of the 20 lucky kids picked for the show we watched (the family next to us had been to 4 shows before their kids were finally picked). Taylor was so proud to don her Jedi robes and wield her light-saber. The Jedi Master taught the kids some moves with their light-sabers and then it was time to fight Darth Vader. Each time a child walked up to confront Vader, he would make some comment from the movies ("Your powers are weak" or "You don't know the power of the dark side" or some such remark). When it was Taylor's turn, Darth Vader said, "The force is strong with this one." Taylor was so proud! After she finished off her fight with Vader, the Jedi Master had her fight off two Stormtroopers as well. She was the only kid who got to fight the Stormtroopers, too. She had such a big smile when the show finished! I think I even took some pictures through my tears.



After the Jedi training we went on a few more rides and then headed back to the hotel for naps and to cool down (it was hot!). We came back to the park at 6. The kids rode on the new submarine ride and a couple of other things before we started to make our way to Frontierland for the Fantasmic show. The show stage is across the river on Tom Sawyer's Island so people line up all along the river bank and the steps leading up to "Orleans Square" to watch the show. We had been told to check in approx. 30-45 minutes early so we went over an hour early figuring we'd ride some of the rides over there first and then check in. Well, even a full hour before the show, spectators choked the area, jostling for places to watch the show. We abandoned thoughts of another ride and checked into the VIP area where we had space waiting for us. There were some steps roped off in the VIP area (room for probably 50-75 people). There were already others waiting there so we sat down.

During the wait for the show, there was a band playing on a raft that went back and forth along the river. Taylor entertained the crowd in our section by dancing for almost the entire hour until the show began. Everyone was taken by the site of this bald girl with a tube in her nose dancing as if she had no cares in the world. In fact, some people in an adjoining section even sent over a dessert plate to us after watching Taylor's performance (I didn't tell them that she couldn't eat).

The Fantasmic show was terrific and the kids loved it. The Disneyland fireworks followed the show and were fabulous. We ended the evening with one more ride on the Jungle Cruise (that was the third trip on that ride that day) before heading back to the hotel and turning in for the night. It was a wonderful day. Cancer seemed a distant memory.

Day 2 at Disneyland started with a sweep through Fantasyland. We rode Alice in Wonderland, Mr. Toad's Wild Ride, Peter Pan, Snow White, et al. With the pass, we rode all of those rides in less time than it would have taken us to stand in line for just one of the rides.

While Taylor is tall enough to ride any of the rides at Disneyland (she's a tall kid); Charlie is not. The first day, Taylor refused to go on any ride that Charlie could not go on. Although we thought it a very sweet gesture, we encouraged her to have fun the second day and ride some of the taller kid rides if she wanted to. She decided to try Star Tours (I'm not surprised as it is based on Star Wars). She loved it! Later that day, she tried Big Thunder Mountain Railway and thought that was a great ride (as we exited the ride she told me, "That's the fastest roller coaster in the world, as far as I know."). Charlie's favorite ride was Buzz Lightyear Astro Blasters (I enjoyed that myself). We also caught a parade on the second day at the California Adventure park featuring the characters from the various Disney Pixar movies. The kids loved it. When we finally left Disneyland for good on the night of the second day, Taylor bawled. She must have cried for 20 minutes. She told us it was because she had such a good time with her family. We were touched.

Frankly, she had good reason to cry. Leaving Disneyland that night meant one more night in the hotel followed by chemo the next day. That's right, we are cruel parents. Disneyland fun followed by chemo hell.

Taylor got her chemo on Friday night. She was in a great mood throughout Friday. Saturday was a rough morning. She slept a lot, but threw up whenever she awoke. She had terrible leg pains for a while that made her very uncomfortable. Still, the hospital released us in the early afternoon, and Taylor was home by 3. She recovered quickly and was in a great mood throughout the rest of Saturday. She's in a great mood today, too.

It was a wonderful week. For me, this week represented the light at the end of the tunnel. Although we still have months of treatment to go, I feel like I have glimpsed what the end will bring, and it will be wonderful.