We Love Taylor!

WELCOME WILL!

2009-05-05T23:03:00.001-07:00

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

2009-03-27T13:47:00.000-07:00

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

2009-03-12T14:24:00.000-07:00

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

2008-11-23T15:09:00.000-08:00

Taylor is home...with her new puppy, as promised! Hooray! Go T!

Update from Kristin: November 10, 2008

2008-11-10T22:48:00.001-08:00

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

2008-11-05T12:41:00.000-08:00

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

2008-11-04T18:40:00.000-08:00

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

2008-10-31T22:46:00.000-07:00

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

2008-10-03T13:04:00.001-07:00

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

2008-10-01T14:45:00.000-07:00

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

2008-09-25T00:14:00.000-07:00

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

2008-09-19T21:49:00.000-07:00

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

2008-09-15T21:54:00.000-07:00

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

2008-09-03T16:15:00.000-07:00

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

2008-08-23T13:38:00.000-07:00

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

2008-08-18T11:56:00.000-07:00

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

2008-08-07T12:56:00.000-07:00

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

2008-07-27T15:40:00.001-07:00

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

2008-07-22T13:58:00.000-07:00

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

2008-07-20T14:03:00.000-07:00

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.

Please Join Us!

2008-07-09T10:40:00.000-07:00

The Berg Family cordially invites you to a special night at

La Grande Orange

in honor of Taylor Thorell

for Childrens Hospital Los Angeles

Where: La Grande Orange Restaurant

260 S. Raymond Ave. Pasadena

626.356.4444

When: Sunday July 13st, 5pm-8pm

Cost: *$39 per adult, children are FREE

*A portion of the door proceeds will go to Childrens Hospital Los Angeles

Update from Keith: July 4th, 2008

2008-07-04T14:14:00.000-07:00

Happy 4th to all of the blog readers. Unfortunately, Taylor will be celebrating from the hospital. Last night we went out and watched the Altadena Country Club's fireworks show at 9:30. When we came home, T just didn't seem right to Kris and so Kris took her temperature. Sure enough, it was 38.5 (somewhere north of 101 Fahrenheit). Thus, we summoned Kris's mom to come over and watch Charlie and we took Taylor down to the hospital at about 11:30 last night.

Kris was smart about it. No one wants to get stuck in the Emergency Department there for the entire night. Thus, when Kris called the Hem/Onc doctor on call, she insisted that they admit us directly into a bed, instead of making us go through the ED which is the usual procedure.

It was a scramble to find a bed. 4W was essentially full last night. They found a bed for Taylor in the BMT (Bone Marrow Transplant) "cave" that hides surreptitiously between rooms on 4W. I call it a cave because it is surprisingly big. There are three bed rooms and a nursing station that has 2 nurses at all times. These beds are for kids who have either undergone a BMT or will do so soon. Either way, the kids have no ability to make white blood cells so to get in the cave everyone has to step on sticky paper (to pull the germs off) and then gown and mask up after scrubbing with surgical sponges and soap. I've got a cold, so I can't even think of going back there.

The beds in the cave are behind plastic bubbles that have an arm sheath and gloves coming out of it. That way the nurse can stand on one side of the bubble, put her arms into the sheath and gloves and treat the patients without touching them or bringing any germs to them. It's a little overkill for T's condition but then again her white blood cell count was less than 0.1 last night so maybe she needs that.

This is the earliest following chemo that I can remember T being hospitalized (except, of course, those long early months when she was in the hospital virtually all of the time). Our guess is she won't be released until Tuesday which is when her counts start going back up. We actually expected her to need hospitalization this weekend (as she does nearly every time following chemo), but we didn't plan on it starting this early.

Oh well. At least she saw fireworks last night.

Update from Kristin: June 26th, 2008

2008-06-26T22:27:00.000-07:00

We are once again coming to the end of a great third week. Taylor has been cheerful, active, and feeling great. That will all come to a halt tomorrow when we return for more chemo. It is so hard to take her back there again. Keith and I were saying to each other that the longer that we are away from the hospital, the harder it is to return. It is hard not to be greedy with the good times. I look back to March and remember praying for a single pain free day with no throwing up and just wanting to hear Taylor giggle and see her smile. We have had almost ten days of that now. Each third week of the chemo cycle seems better than that last!

We started physical therapy last week. Taylor really enjoys it because she plays games most of the time and gets to play with balls and walk on balance beams. We have also been swimming a few times. We bought her a ring so that her face and the tape for her ng tube can stay dry. She loves to just kick around the pool and play. Then her PaPa introduced her to the nice warm jacuzzi where she can touch the bottom with no problem and there are bubbles! I am not sure she will ever go back to the pool! Taylor has also been much more active at home. She walked halfway up the hill three times in a row last night.She would have gone the whole way if I would have been willing to go with her but I am not crazy. The hill that we live on is very steep and menacing. There were days when she could not even walk out to the mailbox with me.

Taylor has also been spending a couple hours a week with her teacher. Her teacher, Mrs. Agundez, is one of the most amazing women and she loves her! This week they were working on math and reading. Taylor really looks forward to her visits and we are so blessed to have her. One thing that I have learned over the past few months is that I would have made a horrible teacher. I tend to lose my patience and just do everything for her. I guess we all have our callings and mine is not teaching!

We will try to give another update this weekend and let everyone know how Taylor is doing. There is a small possibility that Taylor might not be ready for chemo on Friday if her platelets are still too low. Hopefully her body will cooperate and we will be one step closer to the end of chemo. They have decided to hold the Vincristine again so hopefully the dactinomycin and cytoxan are doing their jobs!

Update from Keith: June 15th, 2008

2008-06-16T11:09:00.000-07:00

Well, today wasn't quite the Father's Day that I had imagined. T had a difficult time last night; she threw up every three hours or so. When this repeated at 6:30 AM, I could feel she was quite warm. Uh oh.

We took her temperature and she was 38.4 (about 101). Any fever over 38 and we have to call the hospital. Kris did and, of course, they asked us to come in right away. My Dad came over to watch Charlie (Charles was still sleeping) and we left for the hospital around 7.

The first stop on these visits is always the Emergency Department. They are mostly clueless about what to do with T, but they do know how to access her port, who they should call, etc. Of course, they also insist on doing their own exam each time and coming up with their own pet diagnosis for what ails her. As if Rhabdomyosarcoma is insufficient to explain her condition.

When we got to the ED, her temperature was 38.9 and she was having chills. They fairly quickly got us into our own room (which is good because it allows Taylor to take of the surgical mask that she otherwise wears when anywhere in the hospital outside 4 West). Taylor threw up not long after we got there; she was nervous about having to have her port accessed (and thus stuck with a needle) and that sometimes leads to vomiting. It's frustrating for Kris and I because we really want T to be used to this by now (after all this happens a couple of times each week and she always reports that the pain is not much) but we forget she's only 6. Six year olds (and especially 6 year olds named Taylor Thorell) get nervous over things like this).

After that, the ED resident came in to assess her. The nurse quickly asked him if she should re-administer the dose of Tylenol that T had just thrown up. The doc told her to give T Motrin instead. Big mistake. Motrin is a no-no for cancer kids because it can interfere with platelet growth or something like that. Kris pointed it out and he decided to stick with Tylenol. Good idea, Doc. Did that take 4 years of med school to figure out?

That was just a warm-up for this guy. He had lots of questions about her medical history (was she full term? why did you have a c-section?, etc.) One of these days, in my best Carville voice, I just want to say, "It's the rhabdomyosarcoma, stupid!" After the endless annoying questions, he looked at her mouth (briefly; I think he could tell it was over his level of competence), listened to her chest intently, and then turned to check her abdomen. So, he starts pressing on her stomach hard and asking if it hurts (of course it hurts, moron, you're pressing hard on it). Taylor, being 6, answered truthfully and told him yeah, it hurts (it would hurt me, too). So, Dr Genius decides that T needs a stomach X-ray because she has stomach pain. Leave aside that the only reason we are here is not because she has pain anywhere or even because of her chronic emesis, but is solely because she needs antibiotics since she is neutropenic and has a 38.4 degree fever. This guy apparently thinks that a stomach X-ray is going to solve all Taylor's problems. Do you think maybe it's the rhabdomyosarcoma IN HER HEAD that is causing her the problems, Doc? But seriously, thanks for exposing her to more radiation. God knows she needs more of that.

I'm not even sure how the stomach X-ray turned out. In fact, I'm not sure anyone ever viewed it. No wonder the cost of emergency room visits is bankrupting our health care system. The only good thing was that the radiology waiting room (where Taylor had to again don her mask and risk exposing herself to more germs) had the show "Full House" on, which Taylor likes (the ED rooms have TV's but no reception, they only play DVD's). This particular episode was set in Tahoe, so Taylor liked it even better. I hope we can take a long weekend there sometime this summer. I think it would be good for T.

Not long after the X-ray, a bed was ready on 4 West. So we went up there around 11 and T remains there getting antibiotics. Episodes like this usually result in a 72 hour stay unless a blood culture shows something to worry about in which case they can be longer.

I spent Father's Day morning with Taylor and the afternoon with Charlie. We went back down at night and Kris, Charlie and I went to dinner while my parents spent time with T. She was mostly in good spirits today which is a definite improvement from the last few days.

My Mom will spend tomorrow night with T and I'll probably spend Tuesday night if my work schedule permits. I can always take a rain check on Father's Day. Heck, the only thing I want anyway is for T to get better and maybe this stay will move that closer. Here's hoping.

Update from Keith: June 13th, 2008

2008-06-13T11:01:00.001-07:00

Taylor's week started pretty well. I thought she had more smiles than usual this close to chemo. But as the week has dragged on (and her white cell counts have plummeted), she has noticeably worsened. She has been much more nauseous the last few days than she was at the beginning of the week. She is also clearly uncomfortable. She has complained frequently that her tummy is hurting. We're a little concerned that her mucositis has spread to her stomach. We're watching closely to see.

Taylor received a transfusion again yesterday. She received both red blood cells and platelets. We're hopeful this will take her through the weekend. Our experience has shown that she is most likely to spike a fever sometime this weekend (usually Saturday night) if she develops one at all. Thus, we suspect she could wind up in the hospital over the weekend (that's not exactly what I want for father's day). If it happens, it requires at least a 72 hour stay which means that she'll be there into next week.

Kris has really been struggling of late. She is really down and is having a hard time coping with the stress of Taylor's treatments. It's hard for her because she spends all day with Taylor and sees every little setback and witnesses T's suffering. I'm trying to get Kris to go out of town for a weekend or even a night, but she refuses.

If things stick to the regular schedule, Taylor should turn the corner around the middle of next week. I hope we make it through without going back to the hospital. In any event, I will try and update the blog again over the weekend.

Update from Keith: June 9th, 2008

2008-06-10T08:21:00.000-07:00

Taylor had chemo on Friday night. As usual, they didn't start her on chemo until 11:00. At least it wasn't because the attending could not be found. This week's attending signed off on Taylor's chemo not long after she was assigned a bed.

It was a mini-reunion on 4 West this Friday. Taylor's original roommate from her first hospital stay, Sophia (or maybe it's Sofia?), was there because she had developed a fever. Kris and Sophia's mom, Amy, text each other often and it was nice to see them again. I can remember being jealous of Sophia and Amy back in those dark days because although she has a brain tumor, her prognosis was better than Taylor's. Now I am just happy that both Taylor and Sophia seem to be getting better.

Also on the floor on Friday night was Robert, a 4 year old from Simi Valley. Robert was also frequently on the floor during Taylor's long hospital stays. I remember being so amazed that he was often in a good mood, running up and down the halls, and enjoying the play room. That seemed so far away for Taylor at the time (now, Taylor, too, has her bright moments, usually 10+ days post-chemo). Robert's treatment has already finished so seeing him there brought a momentary worry. It seems that his x-rays had revealed some spots somewhere in his body that concerned his doctors that his cancer had returned. After examining him more closely, though, they concluded his cancer has not come back. It was nice to see his parents again, though.

Finally, Maneh, another frequent 4 West patient was on the floor on Friday night getting her last chemo treatment. Maneh is probably 8 or nine years old and is a sweet, smart little girl. She has the same cancer--Ewing's sarcoma--that Kris had. Kris and Maneh's mother talk frequently when both are on the hall. Although I am glad for her that her treatment has finished, it was a little sad saying good-bye to them on Saturday morning as we may never see them again.

One Friday visitor to 4 West particularly excited Taylor; the actress who played the role of "Lavagirl" in the movie the Adventures of Sharkboy and Lavagirl, Taylor Dooley, came to visit the kids. Taylor is a fan of the movie. She was also excited when we told her that the actress's name is also Taylor. But she was also shy. A combination of not having hair and not feeling her best coupled with some natural shyness made T want to stay in bed. Finally, we convinced her to get up and go see Lavagirl. T came back with an autograph and a big smile. She was so proud of herself for meeting someone so "famous." I was proud, too.

I was able to skip night duty at the hospital this time, but I'm told that the same Ativan-induced cycle repeated itself. First, she was extremely high--unable to sit still, very happy--then she came crashing down to the point where she was crying for long periods of time for no particular reason. It's almost an emotionless cry, though. She doesn't seem particularly sad, she just cries. I hate putting her through the Ativan ups and downs, but it's the one drug that seems to curb her chemo-induced nausea. Thus, we put up with the dancing up and down the hall (yes, she literally does this with her IV pole trailing behind her) and the purposeless tears to avoid her throwing up as much (she still throws up, of course).

Taylor was able to come home on Saturday afternoon. She did not feel great, but it is always nice to have her come home. Kris gave her a little Ativan again on Saturday evening and Taylor finally went to bed after a half-hour or so of crying. We hate what the various drugs due to her emotions, but feel powerless. The beneficial effects seem to outweigh the costs (barely) so we keep administering them to her, although I think we will try and skip Ativan in the future except for the day she actually receives chemo.

Kris and I had completely different opinions of Taylor's Sunday. I thought she was surprisingly smiley and in good spirits for 2 days post-chemo. Kris thought Taylor was feeling awful and felt bad about it. I'm not sure why I don't think that, but I thought she seemed really great.

Overnight, though, was a different story. She felt awful at bed time and complained of nausea. She threw up a few times over night. Throwing up for her can be especially awful because of the sores in her mouth. When the stomach acid hits those sores, her mouth just burns. When she threw up around 2:45 last night she asked for some ice which she puts in her mouth after she finishes throwing up to soothe the acid burn. At various times we have kept little baggies of ice in the freezer so that they would be ready for her when she asks. Kris quickly got some last night and brought it to Taylor. T puts each piece in her mouth for 5-10 seconds before she spits it out again. I hope it helped.

The Neulasta $600 blackmail has been resolved in our favor. My Dad called the company this morning and talked to someone over there who admitted that they made a mistake on Friday. While it is true that each dose costs them $2800 (I used to think it was like $9800) they get reimbursed over $3000 by the insurance company. Thus, they make money on the dose, contrary to their Friday evening claims. They apologized for the mistake and for their poor timing and pledged to continue to supply T's Neulasta. Problem solved.

Interestingly, the Attending from last chemo cycle that I wrote about in my last blog entry does appear on the most recent bill. Apparently three-hundred-something dollars is the going rate for not seeing a patient and delaying chemo. My Dad explained to the insurance company why it was an inappropriate charge and they are investigating. I'm interested to see what happens. BTW, the doctor involved is apparently a world-renowned specialist for the types of cancer he generally treats and he is Sophia's doctor. I would enjoy the opportunity to speak with him regarding his inattentive attending duties and his billing practices.

Update from Keith: June 6th, 2008

2008-06-07T09:06:00.000-07:00

Taylor went in for chemo today. The last two chemo treatments, I have been the lucky one to spend the first night with Taylor; tonight is Kris's turn. Chemo nights are often T's worst nights. I dread them.

When Taylor gets chemo, she receives large doses of hydration. One of the chemo drugs (I think it is cyclophosphamide) is toxic to the bladder (frankly, they are all poisons and are toxic to everything, but apparently this one even more so to the bladder). To avoid causing problems to her bladder, they over-hydrate her and insist that she urinate every 2 hours for the first 8 hours following the dose. This wouldn't be a particular problem if she received her chemo at noon. But she never receives her chemo at noon.

Generally, it's much closer to midnight (it's actually been midnight a couple of times) before she gets her chemo. Thus, whichever parent spends the night with her has to wake her every 2 hours and insist she urinate (which, of course, is the last thing she wants to do as she feels awful and just wants to sleep it out). Invariably it leads to vomiting and crying (her and me) and pain and gets repeated again 2 hours later.

The last chemo cycle was especially frustrating. Every chemo day begins with the ritual phoning-the-4-west-charge-nurse-asking-for-a-bed. They know she's coming in for chemo. They know she needs a bed. But we have to call each time in the morning anyway. Call it tradition. Or ritual. Usually, the ritual phone call receives the ritual response: nothing available right now, but we expect some empty beds later, come down in the early afternoon and we'll see if something becomes available (or something to that effect; as with all rituals only certain individuals are privy to it and in our family it is Kris who invokes the chemo phone ritual).
Last cycle was different--a bed was available right away. So, Taylor was in the hospital, in a bed, before noon. Before noon means administering chemo long before sleep which means performing the urination ritual while awake. Hallelujah. Finally a little bit of luck.

But there was a catch. The hospital, it seems, has its own internal rituals. One of their rituals is the chemo approval ritual. Their ritual requires approval of the oncology attending before administering chemo. By noon last cycle, her oncologist, the resident, the charge nurse, and the pharmacy had all signed off on her chemo. Only the attending's approval remained. He was in a meeting. So we waited.

Once 4:00 rolled around and we still had not received the attending's approval (nor had he examined Taylor) I started getting angry. Very angry. At this point I was going to have to wake Taylor at least once, if not more. I registered my complaints with the resident (registering my complaint consisted of me telling them that this was ridiculous and that I thought being an ATTENDing required ATTENDance and that I wasn't going to pay for this a**hole to delay T's chemo, etc. etc.) and they paged him frequently to no avail. Finally, at 6, the nurse came in and told us the attending had signed off on the chemo. The SOB didn't even examine her first. If he's not even going to look at her, why not just sign it in his meeting, or his lunch, or his dalliance with his mistress, or whatever else he had been doing for the past 6 hours.

Thus, Taylor's chemo didn't start until around 7 last cycle and I was stuck waking her up every 2 hours. Worse, we had a particularly bad nurse who I knew I would not be able to count on to come in and wake us up. So that meant I had to stay up all night. When the 8 hours expired, there was still too much of the drug in her urine so we had to extend the wake-up-every-two-hours thing. Even worse, it was particularly hard on Taylor last cycle and she spent part of the night writhing in pain, part of the night high on Ativan, and part of the night paranoid as she came down from her high. It's no fun to see paranoia in a 5 year old (now 6 of course).
I hope that tonight is better for Kris and Taylor, but she still hadn't started chemo as of my last phone call at 9:30. I predict little sleep for Kris.

One interesting development tonight is that this cycle's on-call attending (Dr. Mascarehnas (I'm sure I am butchering the spelling) whose kids go to Mayfield--Taylor's school) felt that she has too many neurological issues to administer Vinchristine (the chemo drug that she was supposed to get weekly, starting today, for the next 6 weeks and which she gets every cycle). Taylor's oncologist had just seen her Tuesday and concluded otherwise. After speaking with Dr. Mascarehnas, he changed his mind and they are holding her Vinchristine. I hope her walk/grip/speech improves.

The other drama tonight concerned her dose of Neulasta that she should get on Monday. Neulasta is a drug that spurs white cell growth. The beauty of it is that it only requires one dose, post-chemo, which lasts all 3 weeks until the next cycle. Otherwise, T would require daily shots of Neupogen in her leg.

Neulasta is extremely expensive, but we are told that the cost of 1 dose of Neulasta is roughly equivalent to 3 weeks worth of Neupogen. Therefore, the insurance company has approved her for Neulasta. We appreciate this greatly because we don't want to put Taylor through any more than the hellish routine she already has. Daily shots are not the answer to her recovery.
For whatever reason, the insurance company will not approve Neulasta to be administered in-patient. Only out-patient. Thus, there is a service that delivers the drug to our house and we (and by we I mean Kris) give her the shot on Monday following chemo.

Well, at 5 minutes to 6:00 tonight (Friday evening), when it is too late to do anything about it with the insurance company, we learned from the home delivery people that they would not deliver us Neulasta unless we pay them $600 (above what insurance pays them). They claimed that they had just looked at their insurance reimbursements for Taylor's medicine and that it costs them $2800 for a dose of Neulasta and the insurance company only pays them $2200. They want the difference from us or they won't deliver the drug.

Frankly, it is worth $600 to me not to see Taylor have daily shots. Still, it is ridiculous to essentially blackmail us when it is too late to appeal to the insurance company or make alternate arrangements (mail order) to get the drug. So, with the gun to our head, I agreed to pay the $600 if it turns out the facts are as the delivery company claims they are. We'll see.
My Dad will follow up with the insurance company on this. One thing that has been great is that my Dad is handling all of our billing. I gave him my credit card number (might as well get the miles) and asked him to go through all the bills, all of the explanation of benefits from the insurance company, make sure that we are being charged what we are supposed to pay and that the insurance is paying what they are supposed to pay, and then pay the bills that come in (but over time if possible). This he has done perfectly. It is a large burden off our shoulders as we simply don't have the time for it. Plus, my Dad is an auditor and has the perfect blend of experience for the job. He quickly sorted all the bills, figured out what we owed, negotiated monthly payments where appropriate, and sent in 8 or so appeals to the insurance company for various things. I can't thank him enough for sorting that out. I'm sure he'll get to the bottom of the Neulasta issue as well.

At the end of the day, $600 is a small price to pay for Taylor's smile. Plus, it is a fairly small portion of Taylor's bills in any event. Heck, this will make up for any charge the attending from last cycle might try to sneak past. My Dad and I are just waiting for that a-hole to appear on the bill. I wonder if they teach the consequences of mail fraud in medical school.

Update from Keith: June 4th, 2008

2008-06-06T08:12:00.000-07:00

I apologize for not doing a better job of late at updating the blog. It is hard for me to do when Taylor's doing reasonably well, as she has lately. Writing for the blog brings me back to those timeless empty nights we spent at the hospital in January, February and March. It's a place in my mind I don't like to visit.

Today Taylor had surgery. It has been planned for some time. We knew that Taylor's NG tube had exceeded its expected life span (this was reinforced on Taylor's birthday, 5/23, when Kris could not get anything through the tube, brought her to the hospital and finally a dose of peroxide combined with shoving a metal wire through her tube opened it again). Thus, one of the things the doctor accomplished today was replacing Taylor's tube.

The other thing we wanted was to see if they could clean out her nose, mouth and throat of the prodigious amounts of mucus that haunt her without end. The doctor was able to clear one nostril, but not the other (T's left nostril is nearly closed with scar tissue and needs more extensive repair than is wise to undertake during chemotherapy). The doctor also scraped off her mouth and tongue; the latter of which smelled like violent death due to the hardened mucus deposits on top of it.

The surgery went very well. The doctor opined that Taylor will have difficulty speaking for some time because of sores on her tongue and possible neurological effects due to her chemo drugs (akin to causing her tongue to feel deadened and making it hard for Taylor to move it). Frankly, I think her speech has been much better of late and I understand much of what she says now; Kris comprehends even more.

We had wondered if Taylor's next chemo treatment (currently scheduled for Friday) could take place after the surgery so that we would not have to come back to the hospital at the end of the week. No luck. While Taylor's platelet counts were enough for surgery (the surgeon prefers at lest 60k, T's were 66k), they are not enough for chemo (oncology likes counts above 75k). Judging by the amount of blood still in her mouth following today's procedure, I'm not sure if she'll have enough platelets for chemo on Friday. I guess we'll see then.

We've mapped out Taylor's planned chemo cycles and the current schedule has her last chemo delivery on Halloween. It seems so far away. it is.

This upcoming chemo cycle marks a new phase. Taylor will get weekly doses of Vincristine for the next 6 weeks, beginning Friday. They did that back when she first started her chemo and it was not particularly enjoyable. It's hard to say if that was from Vincristine, though, or from the daily radiation. I'm not looking forward to this 6 week regimen. It will be nice when it is over.
The last few weeks have been great. She had her birthday on 5/23. It was only 7 days post-chemo, so we just celebrated at home with family. The following week we had a party at Chuck E. Cheese that Taylor loved. Most of her friends were there and I think she enjoyed being a regular kid again. If only for a few hours.

She is going to spend some time at Mayfield tomorrow with her class. The last time she visited, she absolutely loved it. I think tomorrow will be great, too.

I almost forgot the best by-product of her surgery. Taylor lost 2 teeth! Her bottom, center teeth have been loose for some time, although we did not realize it until the day before her surgery when the doctor pointed it out. During her surgery he extracted them so that their falling out would not cause a problem. The tooth fairy will undoubtedly visit tonight. She is very excited. Another chance to be a regular kid.

Lately, the last 10 days or so of her three week chemo cycle have been great. She's been active, engaged, and happy during those times. We now try to schedule things so that she can take advantage of those times to do fun things, see friends, etc. I hope the weekly Vincristine doses don't change this.

Of course, things aren't all rosy. She still throws up a lot (especially at night) and struggles with the problems in her mouth. Her walking remains greatly affected, although even that has improved. Regardless, she is much better than she was 3 months ago. I hope the same is true 3 months from now.

I'll try to be better about updates. She'll get chemo on Friday so we'll probably do an update at the end of the weekend, or early next week. Thanks as always for your love, your help, and your prayers. We can never thank everyone enough or begin to repay all we've received. Nonetheless, we appreciate it all the more.

Update from Kristin: May 14th, 2008

2008-05-15T09:14:00.000-07:00

After multiple calls from people asking if Taylor was still in the hospital, I realized that we had not updated the blog! Taylor was actually released a week ago. We came home last Tuesday with antibiotics and that same night, her eardrum perforated. She had complained about it in the hospital and had said that there was water coming out of it. One of the doctors looked in it and said it was hard to see because it was covered in wax but that the eardrum looked okay. But when she woke up on Wednesday morning, her shirt and pillowcase were covered in a yellow discharge. We called the doctor and they prescribed some ear drops and that was it. She said it didn't hurt and she didn't seem to be as bothered by it as I was. Other than that, things have been great.

We had a very nice and relaxing Mother's Day weekend. Taylor's Aunt, Uncle and cousins were in town from Las Vegas. We made it out to the golf course on Friday afternoon and Taylor putted a few balls, rode around in the golf cart with PaPa, and played with her cousins. She was tired at the end of the afternoon but was wearing a huge smile on her face. Saturday was a quiet day at the house. Sunday we had dinner with friends at the Kennedy home and Taylor again got a chance to play and have fun. That night, Samantha and Taylor painted masks, decorated flip flops, and chased their brothers around the yard and house with tennis racquets (Ann and Mark are much nicer than Mom and Dad!)

On Monday, I was able to drive Taylor down to her father's office to visit and join in their birthday lunch. They were celebrating May birthdays and since Taylor will be six on May 23rd, they were very sweet and sang Happy Birthday to her and let her blow out a few candles. She was so happy to get out of the house and also to spend some time with her dad.

Last night she was so tired that she could barely move when her Grandpa and Nana came by to visit. She told me that she thinks she"needs more blood." I wasn't sure if all of the activity of the last few days was finally catching up to her or if we really will need another transfusion. Coincidentally, we have an appointment down at the hospital today with Dr. May to get the "all clear" for chemo on Friday. At that time they will draw her blood and see how low her hemoglobin is. That said, she was still up and reading Encyclopedia Brown books with her Grandma this morning and was once again wearing a big smile.

Taylor has been more and more herself these days. We get so bogged down with the daily grind: ruptured eardrums, low blood counts, and other side effects that we sometimes do not stop to remember the days that she was crying from pain, couldn't breathe, and could not even hold a conversation! We are grateful for every step forward in her recovery. Hopefully the chemo on Friday will not be too hard on her and she can continue to improve!

Update from Keith: May 4th, 2008

2008-05-05T13:13:00.000-07:00

This has been a cancer kind of weekend. Taylor got a transfusion of red blood cells Friday morning. She's been getting transfused on a weekly basis of late because of low hemoglobin levels. For once, we actually secured an early morning appointment and Taylor was back home at 1:30 or so in the afternoon for what we hoped would be a quiet weekend at home. It was not to be.

I came home in the evening and there was a lot of blood in and around Taylor's mouth. Ominously, little of it was dry, meaning that she was bleeding in her mouth. Although she had been transfused with red blood cells in the morning, she had not received platelets. Her platelet numbers were borderline and there are apparently strong medical reasons not to just give platelets every chance they can. Thus, they decided not to. We would regret that before the night was over.

As evening turned to night, Taylor's bleeding grew worse. It was never anything close to gushing, or even trickling, just a constant red/black tinge around her lips. When we used suction to remove some of the mucus in her mouth (as we do many times every day), the mucus came out red. Kris e-mailed her oncologist to apprise him of her situation. He asked us to monitor it closely and come to the hospital if the bleeding increased.

At a quarter to nine it was clear that Taylor needed to go the hospital. Her mouth was bleeding more and the wound from accessing her port that morning to get her transfusion had bled through the bandage.

We are very lucky to have the support system that has emerged during Taylor's illness. From all those who bring us dinner from time to time, to the many who have brought Taylor gifts, to those whose prayers have helped, and everyone else who has helped us down this road, we are extremely grateful. Mostly it feels like we are not alone which makes all of this much easier. Whenever we need someone to come over to watch Charlie because we need to take Taylor somewhere, we always have people to call on whether it's my parents, or Kris's parents, or my brother and Brooke or someone else. There's always someone available to help . . . except for Friday night.

It was the perfect storm: a surprise trip to the hospital combined with everyone else having plans (it was Friday night, after all, a night that could actually be rather fun when we lived in the non-cancer world). Kris's mom and Bob were out of town; Kirk and Brooke were in the desert; my parents were out to dinner with house guests; and it was so late that we didn't want to call any non-family members because of the imposition. So, we hoped my Dad had his cell phone and could come over and watch Charlie.

We started calling him both at home and on his cell before 9. Nothing. We probably called every 60 seconds to one or both numbers. Not a thing. Kris called Annandale in the hopes they were there; they were not. Finally, sometime after 9:30, my Dad answered the phone at home. They had just returned from dinner. Exactly why he did not have his cell phone with him I cannot say. I was frustrated that we had delayed getting Taylor to the hospital because of his unavailability and I am sure my tone of voice (and my words?) conveyed my frustration. To my father's credit, he did not get upset, just pledged to be at our house quickly, and left immediately. To his further credit, he made great time.

Thus, just before 10, we left home for the hospital (Kris, Taylor and I) with my Dad staying behind to watch Charlie.

The Children's emergency room is always a scary place when you bring in a neturopenic child. The emergency department waiting room is always chock full of coughing, crying kids. I always wonder how many of them have had access to regular immunizations which scares me further. Even a relatively benign virus or bacteria could endanger Taylor's life when she is so neutropenic.

At least the powers that be at Children's recognize the danger. Access to triage from the waiting room is controlled by a security guard. Most of the patients are in the waiting room, virtually no one is behind the door in triage. When we walked up, he immediately sprang to action and cleared Taylor and I into Triage while Kris filled out the admission forms. I guess Taylor's bald head and surgical mask--she always wears it in the hospital when she is anywhere but the 4th floor to avoid infection--gave us away.

Triage also processed us quickly and pretty soon we were admitted to the Emergency Department proper and situated in Room L. All we needed was a platelet transfusion which usually takes about 30 minutes and does not even need a pump--gravity suffices to transfuse the platelets. First, they had to access her port, though. There was a considerable bruise under the skin from the morning access and the lack of platelets. She was also bleeding from the morning's needle stick. To my mind, this should have shown the nurse exactly where her port is, but apparently not because the first 2 sticks failed to get the needle in her port.

The way they check to see if they have properly accessed the port is simple: they shove a three-quarters inch needle in that has a tube coming out of it, they attach a syringe with saline to the end of the needle, they push in a little saline and then pull back the plunger on the syringe. If the tube coming from the needle fills with blood when they pull back the plunger ("return") they know they have hit the port.

The first two times there was no return. Taylor was in agony; not so much because of the pain but because of the thought of the pain (she builds up the needle stick in her head big time each time). The only time before that someone ad failed to access the port on the first try, Taylor threw such a fit (I don't really blame her) that they had to wait a full day to try and access it again. This time, Taylor persevered. She was very brave. And, the third time produced a return. Finally.

Taylor is always energized after her port is finally accessed. She gets so worried ahead of time that the relative lack of pain from the event makes her feel relieved. I'm sure she also has some adrenaline from the worry of it. In any event, the same was true on Friday night; she was a lot happier after her port was accessed.

We read Potter for a while (we are in Harry's third year now) and they finally came in with the platelets. By the time she was transfused and the needle taken out of her port it was early Saturday morning. We finally got home some time after 2 AM. My poor dad was still awake and could finally leave once we got back. At least Charlie stayed in bed.

Taylor slept late on Saturday (she did wake up at 4:30 to throw up, but she throws up most nights). Not until after noon, did she awake. She was clearly miserable most of Saturday. We worried about her temperature because a fever would send us back to the hospital. It was fine most of the day.

The last time she had a chemo cycle, the Saturday one week after chemo saw her temperature get dangerously close to a fever. They consider above 38 Celsius to be a fever. That time, she had a couple of 37.9's, a few 37.7s and even one 38 (38 even is not "above 38"). After flirting with the edge of a fever for a few hours, she finally backed down that Saturday, much to our relief.

She seemed to follow the same pattern this Saturday. She started getting closer and closer to a fever, but not quite. I was optimistic that history would repeat itself, but it was not to be. Around 9:15 we measured her at 38.3. Dread filled my stomach. The second (weekend) night in a row at the hospital, only this time she would not come home.

Kris called the hem/onc (hematology/oncology) fellow to let her know we were coming in because Taylor had a fever. The usual protocol is to come in, go to the Emergency Department and start treatment there while they wait for a bed to open on 4 West (the solid-tumor wing of the cancer floor). We've done that before, usually spending all night and most of the next day in the ED before finally getting a 4W room. This time we were lucky, there were beds available on 4W. The hem/onc fellow told us to just skip the ED, go to hospital admitting, and they would send us right up to 4W.

This time my Dad was home. He came over again to watch Charlie (who was sleeping already) while we went to the hospital. We got through admissions relatively quickly and were assigned to 437B, where we spent most of the month of February.

There was a little bit of drama when we got to the room. Kris and Taylor went straight to T's bed, while I went to the nurse's station to check in. They had not heard that T was being sent up (they knew she was coming but thought she was in the ED). They were shocked and her nurse was a little upset that the ED had not called to warn her. I explained that we had bypassed the ED entirely and it turns out the hem/onc fellow had yet to call and explain the situation. They eventually got things sorted out and checked T's temp around 11. She was 38.1. Barely a fever, but a fever nonetheless.

Accessing her port was an adventure for the second day in a row. Again, it took 3 tries. We finally realized that a big part of the problem is that T likes to sit up which makes it much harder to access because she can squirm a little so they miss. She lay down for the third try and it worked. They immediately started heron antibiotics.

Kris spent Saturday night with T while I went home. It was an uneventful night at the hospital. The only time T has had a fever here so far has been the first reading they took on Saturday night. (Although as I write this at 9:45 on Sunday, her temp is 37.7). If she can keep a fever away and her neutropenia resolves, we can go home. Unfortunately, it is unlikely her neutropenia will resolve for a few more days.

Thus, we are back in the hospital, praying that this does not lead to another 32 day visit. Things seem a little better this time: the floor has a number of empty beds (which is good, less misery going around); Taylor's in good spirits; there is no outward sign of any dangerous infection; and, the playroom is finally open on weekends (where was that when we were here nearly every weekend in late January, February, and March?). We hope this will be a short stay but experience has taught us that it is impossible to predict. As long as she keeps getting better, we can live with unpredictable.

Update from Keith: April 28th, 2008

2008-04-29T14:57:00.001-07:00

Friday was Taylor's regularly scheduled day for chemo. Chemo days are always a little uncertain. We never know if there will be a hospital bed for her or not. Thus, Kris has to call early in the morning (about 8 am) to let them know that we are coming in for chemo and need a bed. Then, Kris has to keep calling every few hours or so until they tell us there is a bed available.

On Friday, we learned that Taylor could come down at about 1. Once we got there, we had to stay in the waiting area as the promised room was not available. Taylor wanted to go to the playroom, so we went up there when it opened at about 2. After half an hour in there she was zapped, so we walked down the hall and found that a bed was finally available. It worked out perfectly and Taylor got some rest.

After obtaining a bed, the next order of business is getting hydrated. To do this, they have to access T's port which means sticking a needle in her chest. Not surprisingly she hates that part, although she usually reports that the pain was less than anticipated (of course, she forgets this by the time the next one comes around). Poor T gets very nervous about this and is nauseated leading up to the actual event. She always holds one of our hands and squeezes very hard when they prick her. On Friday, things went smoothly and T told us that it didn't hurt too bad. She is always quite relieved once it is over.

After hours of hydration, they finally gave her the chemo around Midnight on Friday night/Saturday morning. Delivery of chemotherapy requires significant preparation in terms of dosing Taylor with medications to try and limit chemotherapy's side effects. Thus, in addition to her usual regimen of medicines (oxycodone, remeron, mucinex, fluconazole, and Bactrim (only on weekends)), she receives Zofran (an anti-nausea drug that is often part of her regular regimen, especially after chemo), and Ativan (an anti-anxiety drug that has anti-nausea effects on chemo patients). She had first received Ativan the time before and it worked very well. She did not throw up at the hospital at all the time before. Of course, once we got home and had no Ativan she threw up copiously. Thus, we secured a scrip for Ativan so we could adminster it at home this time.

(As an aside, if this list of medications seems long, it is not half of the medications that she received during her last extended stay in the hospital).

The chemo itself is fairly quick; it consists of three drugs (poisons literally as they are designed to kill cells). Two of them are just "pushes" (i.e. the nurse loads it in a syringe and just pushes the contents of the syringe into T's port). The third has to be pumped into her body over an hour or so.

On Friday, administering the chemo went just fine. In fact, Taylor was wired. The Ativan might have been part of the reason why, but it also turns out that Mom let T sleep in until 11:30 on Friday morning, so that she wanted to stay up watching movies with Dad all Friday night. As such, we stayed up until 2:45 watching Annie, the Adventures of Sharkboy and Lavagirl and other such fare. T finally went to sleep then.

When Taylor gets chemo, it is imperative that she urinate every two hours for the first 12 hours following the therapy. One of the chemo drugs can have a particularly harsh effect on the bladder, so she needs to eliminate her urine frequently to keep it out of her bladder. They keep her well hydrated to assist with this as well as to keep the concentration of the drug in her bladder as small as possible.

The effect of this is that we have to awaken her every 2 hours to go to the potty. I woke her at 4:15 the first time. She was quite groggy. The nausea also caught up with her and she threw up. This was unfortunate because they won't release kids to go home who are still suffering from bad nausea. The previous chemo trip she was able to avoid this so we went home after less than 24 hours. I woke her again at 6:15 and then 8:15. Each time she went to the potty, but also threw up. By the time 10 am rolled around she had thrown up 4 times already (there was very little for her to throw up as we had not fed her for a day or so, knowing that chemo would make food impossible).

I went home to sleep at 9:30 on Saturday morning as the hour and a half between 2:45 and 4:15 and the almost 2 hours between 4:30 and 6:10 represented my only sleep the night before. During the day, Taylor remained nauseated and they added Benadryl and Reglan to her anti-nausea medications. Although the doctor pretty much left it up to us as to whether to go home on Saturday, we consulted Taylor and her nurses and determined that it was best she stay at the hospital on Saturday night. Taylor requested that her Nana spend the night with her and the two of them had fun.

By Sunday morning, Taylor had stopped throwing up and was stable. Everytime she has chemo, her face gets swollen. She had her normal Chemo "puffy-face" on Sunday. Everything looked fine and we were able to bring her home by noon on Sunday.

Since coming home, Taylor has been in good spirits although she is tired out from her chemo regimen. As always, we will cross our fingers and hope she does not develop a fever in the next few weeks so that we can avoid going to the hospital.

Being back in the hospital over the weekend was bittersweet. It is nice to see many of the nurses with whom we are friendly and the staff at the playroom. Kris is friends with some of the other cancer moms and they got back together and traded stories. The sad news is that apparently 3 children died on the floor last week (one of the deaths, we are told, was not from cancer itself but from developing an infection while neutropenic which is why we must go to the hospital whenever Taylor develops a fever following chemo). It was an all-too sobering reminder of what is at stake.

Update from Keith: April 23rd, 2008

2008-04-23T11:51:00.000-07:00

At the outset of Taylor's treatment, they told us she would not have any scans to see the progress of her therapy's effect on the tumor until 12 weeks had passed. In the end, because she got a sinus infection, she had a CT scan after only 7 weeks or so, that showed excellent progress. Yesterday was her first 12-week scan.

Taylor has managed to stay out of the hospital the entirety of her current 3-week chemo cycle. Or at least she has managed to stay out of spending the night at the hospital. She has been in each of the last two Fridays to recieve blood transfusions (thanks again to all who have donated).

It has been wonderful for all of us to have Taylor home during this stretch. She has been able to get out of the house a little bit and has generally been much happier than she usually is at the hospital.

Taylor's CT scan yesterday was all good news. The tumor has continued to shrink. The scan cannot reveal whether the tumor cells are alive or dead which is the true measure of success, but a shrinking tumor is very good news. Taylor's oncologist seems pleased by her progress.

Taylor will be back in the hospital overnight on Friday for her regular chemotherapy regimen. Last time she made it through the first day without throwing up but had a really bad second day (at least it was at home). We have asked to modify her anti-nausea medicaiton somewhat in the hope that we can avoid a traumatic Sunday. We are very hopeful that things will proceed as they did last time: chemo on Friday night, home on Saturday afternoon.

While things are much better than they were in February and March when Taylor spent so much time in the hospital, there are still problems. Taylor's mouth is still a mess and there is no end in sight. Each chemo treatment exacerbates the damage the radiation did and makes healing that much tougher. She throws up usually once a day or more because of the collection of mucus in her throat. That usually provides her enough relief to take her to the next day. We also suction her mouth regularly but much of this stuff is stubborn and doesn't move. Moreover, Taylor's mouth is very sore and it hurts for her to clean her mouth. It's no fun.

Taylor also has some lingering neurological effects from her chemo drugs. Her gait is ungainly and it is sometimes difficult for her to balance while walking. This is a side effect of one of her chemo drugs. It has improved a little over the last week or so, but it's probably an issue that she'll struggle with for a while.

We are encouraged by her CT scan results and have even begun settling into a routine that we never chose, but must accept. So much has happened since she first started her course of treatment and yet we are less than one-third of the way to completion. Now we embark on a constant grind of dealing with Taylor's mouth problems, feeding her through her tube, administering her medication, hoping to avoid spending nights at the hospital, and (most importantly) healing.

Update: April 12th, 2008

2008-04-12T11:23:00.000-07:00

It has been a week since the last post, so I thought I would fill everyone in on what has happened. Basically, it's been textbook - in a good way. Taylor had her chemo treatment last Friday. She was admitted overnight, and discharged the following afternoon! That was great, considering that the last time she went in for chemo, she didn't leave the hospital for a month. The following couple of days were pretty rough on her - she was extremely nasueous, and was vomiting often. But K and K were able to keep her hydrated with some Pedialyte, so she didn't have to go back to the hospital. The rest of the week was pretty uneventful (I think!?!), though she is still struggling with a lot of mucous and swelling in her mouth. She is still very, VERY uncomfortable.

Yesterday, Kristin took T to the hospital so the doctors could evaluate whether or not to give her her weekly dose of vincristine. They decided to give her half of a dose. While they were there, they did a blood draw to get her counts and ended up determining she needed a tranfusion. Kristin was worried they might have to admit her as she spiked a fever one time in the past when she was receiving platelets. Any fever is cause for admission. But she didn't! So she got to go home. Where she remains at this very moment! Keep your fingers crossed.

K and K are planning on taking a few current pictures of Taylor that we'll get posted soon. For any of you reading this who have children who may visit with Taylor at some point in the future, it would be good of you to show them these pictures so that they know what to expect. It is hard to describe to a 5 year old what she is going to look like - and even to adults who knew her before - but she has lost an incredible amount of weight for her small body, her hair is all but gone, and she has a tube in her nose. As Kristin was saying, tubes scare children. And while I am on the subject of future visits, I am going to say on behalf of the Thorells, because I know they would never say it themselves, that Taylor has become aware of her appearance and is very shy right now. She is not often in the mood to see anyone outside of her immediate family. Thank you very much to all the wonderful helpers who have been bringing food and treats to the Thorells - it is so appreciated, but please do not expect to visit with Taylor when you are doing the drop off. At this point, she is really not up for it for the most part.

That's all for now. A real (and probably more accurate) post will be coming from K or K soon. Until then, continue the good thoughts and prayers for sweet T.

Update from Kristin: April 4th, 2008

2008-04-05T14:32:00.000-07:00

We are back at the hospital for Taylor's fourth cycle of chemo. It broke all of our hearts to come back here, especially Taylor's! The last few days had been pretty good ones. Her spirits improved a great deal. She spent most of her days out of bed. She wasn't overly active, but it really lifted her spirits to get up and move around.

The preschool she had attended, Our School, brought over a wagon spilling with toys (many thanks to everyone for that!!) and she spent a good deal of time going through it each day and picking out activities. She and Charlie painted dinosaurs, fought over Transformers, and looked through books together. We even had a chance to dye Easter eggs, which we weren't able to do last week because we were in the hospital.

There is always a constant reminder that she is a new and different Taylor and probably will be forever, but for the first time in months we saw her singing and dancing and laughing at jokes. She is still fighting a pretty rough battle with the mucous and she still needs help getting up and down the stairs but she is now able to hold her head up and has been willing to get out of bed and give a few things a try.

She has been begging to go miniature golfing - thank heaven for the rain because I have a feeling that might be a little more activity than she can handle yet.

We all noticed that she wasn't walking quite right on Wednesday. One of the side effects of the weekly chemo that she gets, Vincristine, can cause children to drop their feet when they walk. This has something to do with the nerves and stopping the drug for a period of time usually corrects the problem, so the doctor has decided to hold that drug for at least this week until it corrects itself. She has also had a drooping eyelid on the right side and the doctor isn't certain if it is also from the Vincristine or from the radiation, or if it is damage from the tumor.

The pain in her head seems to be easing a bit. I am not certain if that is because it is actually getting better or if just being home and out of bed and not thinking about it all of the time makes it less of an issue. She is on a four hour cycle for her pain medication, oxycodone, and the last two hours were always a little rough but lately I have not noticed her grimacing and holding her head as often during that last two hours, even while here at the hospital. Maybe it is wishful thinking but nothing would make me happier than not having to watch her live in constant pain!

The next week or two will probably be rough. The actinomycin-d isonce is once again included in the chemo protocol now that the radiation is complete. It is a pretty harsh drug and can also cause "radiation rebound." Since the damage and pain from the radiation are stillc ausing problems, I can only imagine what she will be forced to endure. She is also expected to have more nausea and more severe neutropenia than the last two cycles which did not include the actinomycin. Considering that during last cycle she got pneumonia and a sinus infection, this could get ugly again. We are told that we could be out of the hospital as early as tomorrow, but that seems optomistic. It would be great but seems very unlikely. The last two times that she has had chemo, she has also spiked a fever the following day, so maybe going home too quickly would only result in a night spent in the emergency room!

We will try to keep everyone updated but please continue to think good thoughts and pray for Taylor!

Update from Kristin: March 31st, 2008

2008-03-31T09:05:00.000-07:00

Taylor has now been home for five nights. It has been a bit of a roller coaster for all of us. The first night home she was in a great mood and ecstatic to be here. The next day she became very sad. It seemed like she had just been so excited to get home and have everything be normal again, but it isn't normal and it isn't going to be for a long time. She spent a great deal of the weekend with her head buried in her pillow. It was hard to tell if she just wasn't feeling well or was really depressed.

She is still battling pain in her head and throws up about once or twice a day. The mucous situation has still been pretty severe. We had the foresight to have a mechanical suction machine brought in and if I give her $5, she will use it. It's that easy! We aren't certain why she has been throwing up. It isn't all bad because it brings out a lot of the mucous which plagues her breathing and speech, but I am starting to suspect that it is the food. She needs to consume six cans of the formula a day to reach her calorie requirement. We aren't quite there yet, especially when you consider that some of it doesn't stay down. We go back and forth between thinking we should slow down on the food or just pump it all in with the hopes that some of it sticks! I think that she has a fragile stomach and that much formula is just a little rough of her tummy.

Keith was brave enough to take her to Target for a few hours yesterday to pick up a few things. The muscles in her legs and her stamina are gone since she has been in a hospital bed for about two months. The outing was good for her and she seemed to enjoy it even though it was tiring. And yesterday afternoon she was in great spirits. She was out of bed for most of the afternoon, even though she was on the couch for the majority of the time. For the first time in two months, she went to bed at bedtime without her movie machine running and it almost seemed like normal. Unfortunately, we didn't have the same luck with Charlie who got out of bed about five times after we put him to bed.

We are all so happy to have Taylor home even with its ups and downs.The nights are long for mom and dad (mom, really) as Taylor requires pain medication at least once a night - not because she is awake and asking, but because we don't want her to wake in the morning with withdrawals. We also have to bring the food pump in and out in our effort to reach our six can goal. She sleeps through most of that, so it bothers us more than her, at least!

We return to the clinic at the hospital tomorrow for a half hour appointment so they can check her and determine if she is ready for chemo at the end of the week :( Then the entire cycle starts again! Hopefully the next week will be a happy comfortable one filled with healing. Her mouth does seem to be improving a bit and it isn't as bloody as before, so the news is not all bad!

She's HOME! March 27th, 2008

2008-03-27T12:07:00.000-07:00

I received the great news this morning that Taylor came home from the hospital late last night! She is very happy to be back. More to come from K or K later today... Hooray, Taylor!

Update from Keith: Easter: March 23rd, 2008

2008-03-23T22:29:00.000-07:00

Last week was mostly great. The news of her CT scan--although her oncologist kicked us in the shins by telling us that even tumors which shrink under therapy can ultimately lead to bad results and so her prognosis is really no different--and the end of radiation made last week great. The first couple of days were all smiles and T was in great spirits.

It wasn't long, however, before the past Friday's chemo kicked in and her white blood cell counts plummeted. With the demise of her white blood cells went her ability to heal from radiation. Wednesday through now has seen Taylor fighting the horror in her mouth, constantly gagging, sometimes vomiting as she deals with her radiation and chemo inflicted injuries without being able to fight them. Not until her counts come back up (which is probably not until late next week judging by her body's past performances) will her condition improve.

As Easter dawns through the window behind me with its promise of resurrected life, I do not feel the joy that such a day should portend. It's been a feverish night, with some of the highest temperatures I've known Taylor to have. Her breathing is labored; her sleep interrupted by bouts of gagging, coughing, throwing up, as she struggles to expel the vast quantities of bloody mucus in her throat. It's not pretty.

I can't say when she will leave the hospital. Today begins her 27th consecutive day here. She has spent all of March in this timeless room; unaware of the change of seasons outside. I want so badly for her to come home but Kris reminds me to be careful what I wish for. This night is a great example why she's better off here. Had we been home and she started this fever we would have had to rush back here which would probably mean 24 hours in the Emergency Department while they scrambled to find her a bed up here. That would certainly be worse than this.

So, I watch her fevered sleep and measure time by racing heart beats and hope for better times ahead. That can be Easter's promise.

Update from Kristin: March 22nd, 2008

2008-03-22T21:43:00.000-07:00

It looks like Taylor will have the opportunity to celebrate Easter with all of the patients here on 4 West at Children's Hospital. Taylor has been battling severe mucositis this week and it causes her to gag and often throw up. The doctors said that they can not send her home until she stops throwing up so often. We are really disappointed because we really wanted her home for Easter. However, she has no white blood cells and we suspected that even if we had taken her home, we would have ended up back here in the emergency room with a fever on Saturday night. As it turns out, we never would have made it out the door today even if they had been planning to let her go, because she spiked a fever at noon and has been battling one all day.

When the attending came by, he told us that since she now has a fever, we will not be able to go home until her blood counts improve. If the last chemo cycle was any indicator, it looks like we may be here until next Friday. If it isn't one thing for poor Taylor, then it is another.

I am not sure that I have ever seen anything as frightening as her mouth looked today. It is filled with bloody mucous that gets lodged in her throat and gags her. I have heard it said over the past few weeks that the head and neck are terrible places to have radiation and I am starting to understand why.

They also chose not to give her the weekly vincristine injection today. Her eyelid has been drooping and that can be a side effect of the vincristine. Although we would prefer to be as aggressive as possible with her treatment, it is nice to think that her body will get a week of rest from all chemo and radiation. Perhaps this time next week, we will all be home again...but I think that I said that last week and probably the week before that!

RADIATION IS OVER! March 17th, 2008

2008-03-17T13:23:00.000-07:00

Taylor received her LAST radiation treatment this morning!! Hooray! The hope is that her mouth and throat will now begin to heal which should improve her overall well-being significantly.

Additional good news: Yesterday Taylor had an impromptu CT scan because the Drs. were suspecting that she had a sinus infection. It turns out she does, so they are changing her anitbiotics. BUT they did the CT scan with contrast so they could get a good picture of the tumor. This was six weeks earlier than we expected to see it, so no one was really mentally prepared. However, it turns out that the treatments have really been working and it is much, MUCH smaller than it used to be! The radiation oncologist was very pleased with the results. There is still some tumor on the left side, but that is not unusual and the chemo should hopefully work that away in the next few months. We are very excited with the progress!

Happy St. Patricks Day!

Update: March 14th, 2008

2008-03-14T13:57:00.000-07:00

Nothing ever seems to go as planned! Taylor went to radiation yesterday where she was supposed to get her new PICC line while sedated. Well, the PICC nurse tried to insert a new PICC and it wouldn't work. So the anesthesiologist assessed her and decided that she would do fine in surgery for a port. So we did not have chemo yesterday, but we are scheduled for surgery for the port today after radiation. And then she will have chemo. And her very last radiation, barring any unforeseen circumstances, will be on MONDAY. Hooray!

Keith lands tonight at 9. Taylor can not wait. She was a missing him yesterday and wished he could be here today for the surgery. But he will return tonight to her treatments being back on track.

Update from Kristin: March 12th, 2008

2008-03-13T17:38:00.000-07:00

Taylor is hanging in there in her way... not great, not awful. Nana is with her tonight (Wed) so hopefully it will be uneventful. Taylor was able to receive her radiation treatment today (hurray!). Tomorrow morning she will hopefully get the first of her LAST THREE treatments and during the sedation, they will place another PICC line. The last couple of days, they had been talking about replacing the PICC she had with a port, but a port would require a trip to the operating room (because she is sedated during radiation, but not put under entirely) and the doctors thought that would be too risky with pneumonia.

By the way, a PICC line is a central line that carries the drugs deeper into the body. We need either a port or PICC for chemo to begin again, so we will take what we can get! Chemo can not be done as safely with a regular iv because it delivers drugs to the veins. We are hopeful that she will get the PICC during radiation in the morning, and then her chemo tomorrow afternoon!

Taylor's mucous is so severe and so nasty. We think it is the reason that she is throwing up these days. We weren't certain if the mucous was a result of the pneumonia but we are told that this is a "normal' response to radiation and she is getting a very strong dose of radiation. The next few weeks will probably be rough for Taylor but after that, we hope to start the healing process!

Update from Keith: March 11th, 2008

2008-03-11T21:30:00.000-07:00

As if cancer wasn't enough, Taylor has pneumonia now. The radiation scheduled for today, the surgery to get the port working scheduled for today, and the chemotherapy scheduled for today were all canceled because of this new danger. The good news is that the docs think it should be relatively easy to control. We're hoping she'll resume her normal treatment tomorrow (Wednesday) or Thursday at the latest. We were strongly hoping she'd come home at the end of the week. I don't know if that is still possible.

Last night (Tuesday) was a miserable night. T's hand was swelling where they had put in her IV Friday after removing the PICC line. This made it necessary for her to get a new IV, this time in the other hand. No fun for a 5 year-old (or even a 35 year-old). It seemed a temporary solution at the time since she was supposed to get her port today. Of course, as I mentioned above, that didn't happen.

Getting the IV was the easy part of the night. Taylor threw up at one point just after receiving a number of different oral medications through her NG tube. This required the feeding to be turned off for a while and the medicine to be re-administered.

Nights with T of late are hard. She retches (dry heaves) often into her bucket. Sometimes it culminates in full fledged throwing up, as it did last night. Most times, it is just another reminder of her discomfort and pain.

Last night her heart was racing all night long. She fell asleep readily but it was a fitful sleep. Frequent moaning was accompanied by thrashing about. She was clearly uncomfortable. Even while sleeping, her heart beat 170 times a minute. Her normal sleeping heart rate (normal meaning with cancer since we never needed to measure her heart rate before she was diagnosed) is between 100-120, usually closer to 120. 170 is off the charts fast for sleeping. Worse, when she awakened to use the restroom her heart rate exceeded 200. Clearly something was very wrong.

Usually we suspect her elevated heart rate is the result of pain in her body. That's been true most times in the past. But last night she consistently reported no pain (at least at the beginning of the night). I kept summoning her nurse and we paged the pediatric resident who came down a couple of times during the night. None of us could figure what was behind Taylor's sprinting heart. Finally, around 3, Taylor began exhibiting a fever. A chest X-Ray confirmed that she has pneumonia.

It's good that everyone thinks it is highly treatable and will clear up quickly. But the pneumonia is preventing her cancer treatments from continuing and we don't like that. We were so anxious for this to be her last week of radiation. Now, the hell in her mouth will continue past this week.

I feel like we've done nothing but take steps backward. Every time we feel we are getting the handle on something, something worse pops up and changes her treatment. Although none of this should affect her overall prognosis, it is emotionally wrenching for all of us--maybe T most of all. When she finally got out of the hospital in mid-February after her initial stay, I thought that we would never again be in the hospital that long (22 days). This is night 16 of this stay, and even if they give her chemo tomorrow she'll be there through at least night 18. More than 22 is still in the picture. It feels endless.

Someday this will be past. Someday the last 8 weeks will seem like minor bumps on the road to cancer victory. But right now it feels unmanageable; insurmountable; crushing. And it will mostly fall on Kris and T; I'm headed to NYC in the morning for work, not to return until Friday night. I'd like to believe that Taylor will be home when I get back, but I know better. Hope is in short supply of late.

Update from Kristin: March 11th, 2008

2008-03-11T15:07:00.000-07:00

Everyday presents a new hurdle! Last night, Taylor spiked a fever and her heart rate was in the 170's. Radiation, the port placement, AND chemo were all postponed. A chest x-ray was taken and it seems that Taylor has a little case of pneumonia. The doctors are not overly concerned with this and feel that antibiotics should take care of it in a day or two. We are not sure when they will decide to do the radiation, port, and chemo but hope it will be in the next couple of days.

Her heart rate has dropped a bit today and she is in pretty good spirits. She even made it down to watch a magic show today. She has been such a good sport and I am so proud of her.

The past 2 days have been pretty procedure laden: yesterday they had to replace her IV and she has had numerous pokes to have blood drawn. She has been so very brave. The chest x-ray also showed that the NG tube was a little high so they had to untape it and push it down into her stomach further. To do this they had to remove the tape that was holding the tube in place - it turns out that having tape removed is far worse than any needle! But they were able to correct the problem and they are hoping that it will resolve some of the stomach upset that she has been experiencing over the past few days.

I have to say that it is really easy to get frustrated because it seems like Taylor can not catch a break. However, with the big picture in mind, there are still a number of people walking through these halls that currently face much larger and more permanent obstacles than Taylor and they still manage to put smiles on their faces.

Today we had the opportunity to meet a boy in the playroom named Enzo. Enzo was treated last year for a rhabdomyosarcoma that sounds very much like Taylor's. He had his tumor in the exact same location and he also had an intercranial extension just like Taylor. Today, Enzo is in remission! He was just back at CH today for a scan. It was great that Taylor had the chance to meet him - to see how he was running and playing and that hopefully in a year from now, she will be doing as well as he is. We will try to keep everyone posted. Please continue to pray for Taylor!

Update from Keith: March 8th, 2008

2008-03-08T19:13:00.000-08:00

We seem to be taking more steps backward than forward. Tonight, we were playing in the playroom when I noticed some blood in Taylor's PICC line. Her PICC line is the tube they inserted into her arm during her initial surgery back on January 23. She gets all of her hydration through her PICC line and the vast majority of her medicine goes through there as well.

It is not altogether unusual for her to have blood in her PICC line. On Thursday night, they transfused her through her PICC, giving her another unit of red blood. Every day they take blood from her PICC, so they can check her blood counts. These things can leave a little red tinge in the line.

Tonight was unusual, though. Her pump was on and was was supposedly pumping medicine into her arm. With medicine and hydration going in, no blood should be coming out. So, I went to the nurse's station while Taylor was working on some construction paper in the playroom and told her nurse what I had seen. The nurse came into check it and immediately said we had to go back to her room.

Back in her room, they determined that there was a hole in her PICC line. This is problematic. The easy problem is that it prevented her from getting anymore medicine and hydration. They gave her an IV in her other hand so that they could accomplish this. The hard problem is that the hole could allow infectious agents into her bloodstream which could make her septic. We're monitoring her temperature to make sure that this hasn't happened. The end result was that her PICC line, which can only be inserted surgically, has been removed (that was a painless matter of just pulling it out, which the nurses did over T's objections). The IV is only a temporary solution as it cannot be used to deliver chemo, which she is scheduled for on Tuesday. Most likely, she will have to have surgery on Monday to insert a new line.

I'm hoping that she'll get a port this time, instead of a PICC or other catheter. Initially, Kris and I were dead-set against a port. Kris had a catheter when she had cancer and we thought it was so much better than a port because a port lies under the skin necessitating a needle poke each time the doctors/nurses access it. This seemed a needless waste of pain to us. We didn't want T to have to go through that and were glad that she had a PICC (PICC stands for Peripherally Inserted Central Catheter).

Now, however, I favor a Port. For one thing, the skin acts as a natural barrier against infectious agents (although we are told that catheters and ports have about the same rate of infection). More importantly, a Port is far less restrictive than a catheter. T can't take a bath right now without wrapping her lower left arm in plastic to keep the PICC out of the water. There is no need for that with a port. This isn't such a big deal now, but during summer when she may want to go swimming, that could be huge. Also, the PICC just gets in the way. It is always sticking out of her arm and flopping by her side even when not hooked up to fluids. I'd rather just have the port which stays out of the way and could allow her to be more active (of course, active is the last thing she wants to be right now, but I am trying to think ahead a few months to a time when I hope things will be much better). Her oncologist has said all along that he prefers a port, but I'm not sure that there is that much time to plan ahead for Monday right now. We might just have to take whatever they are prepared to give us on Monday.

Taylor mostly had a good day today. We went for a short walk outside the hospital in the garden. The sunlight, which she hasn't seen for 12 days, practically blinded her, but it was nice to get out. Her pain has seemed OK today, although something in her mouth was bleeding tonight. It's a nightmare inside there. I'm glad it is too painful for her to open it very far. I'd be scared to see the sores that lie inside.

She has only 5 radiation treatments to go. That should be completed next Friday, but my guess is that she might miss at least Monday because of her failed PICC. They need to access a line to deliver her the anesthesia, and I'm not sure that they'll want to do it with just an IV and I'm not sure they'll want to put her down twice to also giver her the new line/port. We'll have to see what Monday has in store for us.

Looking back at the blog I wanted to update a couple of old issues. Things happen slowly here for us and we often forget to report on concerns that have receded since they are always replaced by fresh ones. Taylor's breathing issues have essentially completely subsided. Her sats aren't perfect but they rarely fall into danger territory anymore. When they do, it is usually because she has so much gunk in her mouth she can't take much air in. Taylor and I have reached an agreement about cleaning her mouth; she won't allow anyone else to clean it (at least when she is not under anesthesia) and I won't force it as long as she does a good job cleaning it herself a few times a day. Thus, T has become pretty good about swabbing her mouth out and cleaning it thoroughly. I'll spare the gory details, but suffice to say that some of the cleanings are especially productive and lead to a marked improvement in her respiration.

T's pain also seems to be much better these days. Dilaudid has made a good difference for her.

T hasn't thrown up for a few days which is nice. She continues to receive nutrition through her NG tube. I hope she's gaining some weight.

Today she got a bath for the first time in almost 2 weeks. She objected beforehand but enjoyed it enough that it was hard for us to get her out.

I hope this weekend will be uneventful. Monday certainly won't be.

Update from Keith: March 6th, 2008

2008-03-06T22:10:00.000-08:00

Tonight is Taylor's 11th consecutive night in the hospital in this, her fourth stay at Children's. Her first stay lasted 22 nights, so this is not the longest stay she's had, but we'll probably be there at least another 5 or 6 more since she has chemo on Tuesday next week.

People ask me all the time what we think of Children's. I would not want Taylor to be anywhere else. They do nothing but treat kids. All of the doctors, nurses, technicians, etc. know how to treat kids. That is impossible to duplicate. Moreover, many of her treating physicians are experts in pediatric cancers and treatments. That also can't be duplicated. In addition, Taylor sees that all of the other patients are kids, too. She is not the only kid with cancer. I think this makes her feel a little better.

But, every day I go there, my stomach clenches. I can't help but feel some times that it is a nasty place. After all, my daughter has spent her most painful nights at that hospital. I lament every night she spends there.

The hospital also has a number of communication difficulties that I won't elaborate here. Suffice to say that the lines of communication between her health care professionals and us are often poor as are the lines of communication between many of the doctors treating her. We are constantly frustrated by this. The hospital also suffers from the same shortcomings that any teaching hospital possesses. As with everything cancer, we take the good with the bad. In this case, (as I hope with Taylor's treatments) the good far outweighs the bad. The bad just tends to stick more in our craw.

She routinely receives excellent care from her nurses on 4 West, nearly all of whom have treated her at one time or another. Last week, we had a substitute nurse one day who didn't work out so well. Taylor was due to receive an antibiotic that was supposed to be infused through her line via a pump over approx. 30-45 minutes. This corresponds to a rate of 70 ml/hr. The nurse accidentally set it at 770. The entire dose was in her bloodstream after no more than 2 minutes. T's head immediately turned red and she started scratching all over. She was reacting to the too-quick dose of the antibiotic. They immediately summoned 2 pediatric residents and an attending and administered Benadryl to stop T's reaction. It was a tense few moments but quickly corrected. To the hospital's credit, the nurse who made the mistake immediately summoned the appropriate doctors and everything turned out fine. Better to have it happen with one of her antibiotics than her chemo drugs. I now watch very closely as they set the rate on her pump.

Like all weeks at the hospital, this one has been a roller coaster. Monday started out well. She gained half a kilo over the weekend by receiving relatively small doses of formula through her nasal tube. She seemed to be tolerating it well and her temperature had remained at good levels. By Tuesday, we were starting to get ready to go home again. In fact, they changed her feeding from a constant rate to simulated "meals" spread throughout the day to get her body accustomed to what it would be like at home. Kris learned how to take care of her NG tube and we were ready for home.

That's when things turned. She threw up after her second "meal." That killed that idea. Wednesday was misery. Her pain was as bad as ever, she threw up again, and got a fever Wednesday night. Her heart raced all day long, beating 170 times per minute while resting. This is a strong sign of discomfort and trouble. They stopped her nutrition again and replaced it with pedialyte so she could get some electrolytes.

Thursday was much better. Taylor is off Morphine. It just doesn't work that well for her. She is in constant pain even with the constant morphine drip. They've tried various dosing amounts and nothing has ever been satisfactory. Kris pushed really hard to finally get them to give her something different. Now she is on Dilaudid which is another opioid but which has been more effective for Taylor, at least so far. To get her to judge her pain, they show her a series of faces that go from smiling and pain-free, to agonizing. Taylor is now accustomed to pointing to the one which describes her pain. Tonight, she pointed to the happy face which corresponds to no pain. I was pleased. Her heart rate is in a more normal range as well.

T was great this afternoon. We played in the playroom, brought Chutes & Ladders back to her room after the playroom closed (she won and we didn't even have to let her) and we played Spiderman dominoes for a while. After that, we read another chapter of Harry Potter and the Chamber of Secrets (Year 2 at Hogwarts for Harry) and she listened to her iPod. She even sang along to the songs (although it remains extremely difficult to understand her vocalizations).

There are 6 radiation sessions left. If we do them all as scheduled, next Friday, 3/14, will be her last (I'll be out of town unfortunately and will miss it). Hopefully, she will begin healing in the weeks that follow and I am cautiously optimistic that mid-April will see Taylor able to eat and swallow on her own.

For now, I think she'll probably be in the hospital for the foreseeable future. Her fever situation seems to keep fluctuating and her white cell counts remain quite low. Her nutrition is important and she seems to tolerate a constant rate much better than a "meal" which is all we could do at home. Plus, she has to be admitted for chemo next Tuesday in any event, so it seems unlikely to me that she'll go home before mid to late next week. Of course, communication being what it is around there, maybe they have already prepared her discharge for tomorrow without saying a word to us. It wouldn't be the first time.

Kris had a hard day on Wednesday witnessing Taylor's pain. She was able to go home for a few hours today but is spending tonight (Thursday) at the hospital. I'll be there tomorrow night.

My sincerest apologies for not updating the blog sooner. I know from hearing from many of you that you check it daily. Last week, though, was simply too tough. Nothing felt happy, no news seemed good. Worse, neither Kris nor I are getting more than 4-6 hours sleep at night and updating the blog is often that one extra thing that means 30 minutes less sleep combined with wrenching emotions as we leave the days past. Still, I resolve to do better in the future. It's always easier when, as now, things seem improved.

Update from Kristin: March 1st, 2008

2008-03-01T20:43:00.000-08:00

This has been a very challenging week. We are still in the hospital and may be for a while longer. The feeding tube was placed on Friday morning and the feedings have begun. Taylor has a tube that goes into her nose and runs down her throat and into her stomach. It allows them to give her formula which is designed to meet all of her nutritional needs. They have started it very slowly and are watching her carefully to ensure that she tolerates it. If this does not work, they will have to resort to tpn, which is iv nutrition. It is very hard on the liver and is really a last resort. Initially, we were very resistant to the tube. It seems now, however, that the doctor \s expected that this would happen. It wasn't really a question of "if" but "when" because radiation to the mouth and throat causes discomfortand ulcers which makes it difficult to eat. We only wish that we had known this earlier because we fought such an emotional battle with Taylor trying to get her to eat. She spent many meals crying and trying hard to please us when it was really a losing battle all along. That is in the past now and we are all relieved, including Taylor, to have the tube. Her body faces such assault and needs to do so much healing. It is nice to know that she will have the resources to repair herself now.

Unfortunately, this was also the week that Charlie came down with the stomach flu. He had been staying with his aunt and uncle while we were in the hospital and his aunt, Brooke, called me on Thursday morning to tell me that Charlie had been up throwing up the night before. Brooke is a saint and is heaven sent and not only said she would keep him with her that day but suggested that she keep him another night so we would all be spared from the bug and would not risk bringing it down to the hospital to Taylor. It was so hard to not be able to be with Charlie when he needed us most. But aside from telling me that he was not my friend anymore, he seems to have forgiven us.

The most difficult part of the week for me was the return of breathing difficulties. It was all too familiar and it frightened me. The doctors have reassured me that she is swollen and congested from the radiation. I just pray that is the case. The fever which brought us to the hospital has broken and her blood counts are on the rise. We have two more weeks of radiation and she will probably take two or three more weeks to heal after that. It looks as though we have a long month in front of us, but hopefully it is all worth it!

Update from Keith: February 26th, 2008

2008-02-26T23:25:00.000-08:00

Taylor is back in the hospital. A 103 degree fever led us to 24 hours in the Children's Hospital Emergency Room (beginning at 7 on Monday night) before she was finally able to get a bed upstairs (yes, we're back "home" on 4 west, the solid tumor wing of the cancer floor at Children's). Just to make the circle complete, we are back in the same crappy three-person room that Taylor was originally admitted into when she first came to Children's on January 22.

Taylor's most recent course of chemotherapy (which was administered last Tuesday night/Wednesday morning at midnight) has left her severely neutropenic. Doctors and nurses love tossing around terms like that (I've decided that it's a form of testing; they use their own (mostly ridiculous) vocabulary to see if they can treat you like a dolt. If you have to ask them what their terms mean, they know they can sneak anything past you; but if you use one of their words correctly they have to actually respond to your questions with real answers which, of course, incorporate new, multi-syllabic gibberish designed to pin down the extent (or lack thereof) of your understanding). To the rest of us, her neutropenia means that she has virtually no white blood cells and is unable to fight off infection on her own. Thus, having a fever (often a symptom of infection) means immediate courses of broad-spectrum antibiotics. And a trip to the emergency room.

Frankly, if neutropenia + fever were her only problems, things would be fine. Her fever has gone down steadily and she didn't really have one for most of today. She's had three courses of three different antibiotics and her blood cultures have come up clean so far. Her biggest problem, which we have been fighting a losing battle against for weeks now, is her inability to eat. She's wasting away.

She's lost about 25% of her body weight at this point. Conservatively, I would say that she has had no more than 1 meal per week (that's right, per week not per day) since she first arrived at the hospital and received a diagnosis. I'm not sure I can remember the last time she ate an actual meal.

Things turned worse this weekend. Her mouth hurts so much from the radiation that she can no longer talk. She communicates by grunting, although sometimes she tries to talk without moving her mouth, like a ventriloquist. We rarely understand what she is saying. The burn in her throat is so bad that she stopped swallowing even her own saliva yesterday. She now drools onto ever-rotating sets of towels that the nurses bring her.

We have tried everything over the last few weeks to get her to eat. But the agony in her mouth cannot be overcome by wishes or promises or love. It breaks my heart to watch her struggle to please us with a small sip of water when I now realize the searing pain she experiences.

We've given up on eating. Unbeknownst to us, her oncologist and radiation oncologist met on Monday to discuss her deteriorating situation and decided that she needs a GI tube to deliver nutrition. Kris and I had surrendered to its inevitability independently about the same time. The plan was to give it to her under anesthesia following today's (Tuesday's) radiation visit, but her emergency room visit and poor health canceled this morning's treatment. Now, the risk of infection may make that too difficult and she may have to have intravenous nutrition which carries with it its own problems. There are no simple solutions. Mostly, there's just problems.

I don't know how Taylor will take to the feeding tube. She's already experienced far more than any five year old should endure and there's much more yet to come.

I look back on those original timeless weeks in the hospital and I recall my naivete. I thought that getting home would somehow cure most of our problems. It has only made them worse. Now, I think that getting her through her radiation treatments and allowing some time for her mouth to heal will make all the difference. I wonder if it is just more naivete.

I'm not sure what the current criteria for her discharge from the hospital will be. At the very least, they would like to see her neutropenia diminish before getting home. That would probably mean coming home Friday or Saturday. I think, though, that the focus will quickly shift from her neutropenia to her nutrition which could keep us there far longer. As with all things cancer, there's no quick fix.

Unexpected Trip...February 26th, 2008

2008-02-26T09:05:00.000-08:00

The following news from Keith came early this morning:

Taylor is back in the hospital. She was running a 103 degree fever yesterday evening (turns out when one's child awakens from a nap and asks for an ice pack, it's a sign of fever--who knew?). She has received two courses of three broad spectrum antibiotics over the last 12 hours to help fight any infection. T will probably be here for at least a couple of days. More to come later.

Update from Kristin: February 21st, 2008

2008-02-21T23:24:00.000-08:00

I keep thinking that this is going to get easier and it just hasn't yet. After suffering from what seemed to be morphine withdrawals over the weekend, Taylor finally seemed to come around on Tuesday, which was the day that we checked in to Children's Hospital for her second cycle of chemotherapy. She was in such a nice mood that evening: singing and coloring and seemingly having fun. Neither she nor I knew what was in store for us in the next 48 hours.

When we checked in, Taylor was pretty dehydrated. This was no surprise as most of the water in our bodies comes from the food we eat and she isn't eating, so they had to give her some extra fluids before we could get started. Finally, around 11pm they were ready to give her the chemo. While on radiation she only receives 2 of the 3 drugs: cytoxan and vincristine. The third (and harshest) drug, Actinomycin D, (or something like that), does not react well with radiation so she was spared it this time. The treatment lasted an hour. As they were removing the chemo bottles from her iv pole, she started to complain about feeling"tingly." She became very agitated and complained that she was very uncomfortable. The nurses finally decided to give her some Benadryl and Reglan which had been added to the orders to assist with nausea. We weren't sure if she was nauseous but figured it might help her to get some sleep. She was restless until about 4am, but finally drifted off for a while until we had to get her up for radiation at 7:15. As for my night, when we had checked in the night before, we had been given a private bed in the bone marrow transplant unit instead of the oncology unit. The private room part was nice, but unlike the oncology ward, the room strangely didn't have a sleeper for the parents, so I had the pleasure of "sleeping" on the floor listening and watching her moan all night - torture for a mom!

It was around the time we got up for radiation that her stomach began to misbehave - only she wasn't throwing up, but having that other problem. She kept moaning that her stomach hurt. The hospital was packed and they had 15 patients in the ER waiting for beds so they were very anxious to move us along. Around noon, we agreed to take her home as long as they provided us with IV hydration because the cytoxan is very hard on the bladder and there was no way she was going to drink anything for us.

When we got home, Taylor was understandably very tired and slept for most of the afternoon. She came downstairs with the best intentions of eating dinner and tried a few bites but just didn't seem very comfortable. She climbed back in bed and buried herself in her comforter. The home health nurse who had delivered the IV hydration had taken Taylor's temperature earlier and it had registered a little high. I decided to check her temperature and was disappointed to see that it was 100.5. I called the doctor on call and was told to keep my eye on her for the next two hours. I checked her again a half hour later and her fever had risen to 102.8. Off we went to the emergency room (the perfect place to go with an immuno-supressed child...) with Keith's father escorting us.

Luckily, the ER was very good about ushering us past all of the sick kids (notice how I still refer to them as the sick kids - not MY cancer-ridden daughter). We were again placed in a private room where they tried to draw some blood only to discover that the pic line had a clot. So they gave her some clot thinner which we had to wait for to kick in before they could continue. We were visited by a resident that told us that her blood counts were still pretty good so they would give her an IV antibiotic and more hydration (as she was dehydrated again) and then we could head home.

By this time it was already 1am and we had an 8:15am radiation appointment, so we were pretty certain that we would be there through the night. They finally appeared with the antibiotic around 4 am. They told us they were going to give her Rosefin which would last for 24 hours. I told the nurse that would be GREAT if only she wasn't ALLERGIC to Omnicef, and that I had been told that Rosefin was in the same family of antibiotics. The nurse looked at me like I was crazy and said he would check with the doctor. The doctor came in and asked what had happened when she had Omnicef and I told them that she had gotten a rash. He asked me if she was really that bothered by it. I just looked at him and told him that I was bothered by it..as well as by the risk of anaphylictic shock. I finally got them to agree with me and they found another antibiotic, which didn't arrive until 4:45. Around 5 am we were good to go. At that point we decided to stay put until radiation. Taylor had been sleeping and seemed to be okay. Bob and I, however, did not sleep a wink! It was a long and torturous night, especially since I had not really slept the night before. That stretch of time from 5 until 8 seemed like a lifetime.

We discovered that we would need to go to the outpatient clinic later that day or the next for another dose of the antibiotic. We had hoped to coordinate that with the blood transfusion that she needed for radiation. We hoped and prayed that would all be on Thursday. Guess what!?!?! That just wasn't going to work. They said we needed to go to the outpatient clinic for the antibiotic immediately following radiation. Who needs sleep anyhow? So off we went to the clinic. At the clinic they told us that it was too soon for the next dose of the antibiotic but that we needed to have the transfusion today and she also needed more hydration. They suggested that we stay for a few hours for hydration, transfusion, and THEN she could have the antibiotic. I really just wanted to throw myself on the floor and cry but forced myself to remember that this is all for Taylor and no matter how uncomfortable I was, she was much worse. Then I looked at her and realized that SHE hadn't thrown herself on the floor crying about it, so I couldn't either.

Thankfully Keith's mother offered to come down and take my place there with Keith's Dad. I gratefully accepted. My mom came down and picked me up so that I was able to go home for a nap. Taylor seemed to be okay with me leaving and I called after my nap to see how she was and she just chatted away. Her fever had broken in the ER, but she was flirting with one again. She was home by 4:30 and was in great spirits. We ordered pizza and she has been working on half a piece for an hour now. I guess it is time to tackle the eating problem again. If it isn't one thing, it is another.

She is really trying her best and her attitude has really been improving since last week. The doctors are all very encouraged with her progress. Her breathing is vastly improved and they think she is doing well. I just have to keep reminding myself that she is improving because I don't always feel that way when she is sick and uncomfortable. No pain, no gain...

Update from Keith: February 19th, 2008

2008-02-20T08:59:00.000-08:00

Taylor's homecoming last week was not quite the magic elixir I had imagined it would be during those dark, tense nights at the hospital in previous weeks. Taylor simply will not eat and it is difficult to watch her waste away. She has lost 20% of her body weight and her bones are protruding. She has gone from being even chubby to where she is now emaciated.

We try everything we can can to persuade her to eat. There is nothing off limits to her. We offer candy, milkshakes, donuts, anything. Treats previously off-limits to her are now available at her every request. Except, of course, she makes no such requests. I have never heard a child so derisively dismiss the offer of treats.

Sometimes we beg her to eat; sometimes we threaten her with dire consequences if she doesn't eat; sometimes we scold her into eating--nothing works. We've told her that continued refusal to eat will result in the doctors putting a tube down her throat to deliver nutrition, but it doesn't sway her. She makes clear she wants no part of that fate, but she reamins unwilling to do the only thing which will prevent it--eat. It turns out a mouth scalded by daily radiation treatments simply can't be cajoled into eating.

I have known that three steps forward (coming home) usually means some steps back (starvation) but this is especially hard to take. I can handle watching her throw up; I even learned to handle watching her struggle to breathe, but I can't watch as she wastes away. I hope and pray that she turns soon.

I learned another lesson about cancer over the weekend: even 5 year olds realize that it is awful. Despite my constant attempts to improve her attitude, she seems depressed. Her failure to eat leaves her devoid of energy which keeps her in bed, which keeps her feeling down. We are trying everything we can think of to get her out of bed and distract her from her condition. She attended the SC-UCLA basketball game with me this last Sunday and enjoyed it. Kirk had to carry her down the stairs of the parking structure and I had to carry her back up, but otherwise she enjoyed herself. She got some new SC hats and even ate a little bit. We only lasted for the first half, but that saved us the rush of traffic at game's end along with the indignity of losing. I thanked her for sparing me that experience.

Things are not all bad. Charlie loves having us all back together again. That has been a wonderful by-product of Taylor's return home. He is much happier than in previous weeks and it makes us happy to see that.

Today Taylor went back to the hospital. It was a planned return as it is time for her chemotherapy again. Wonderfully, she was in great spirits. Tonight she ate a bag of Cheetos (we will stock up on that at home so if anyone local reading this fails to find a bag at their local store, just know that the shortage is due to a good cause). She also had some of a chocolate milkshake and some french fries.

Her treatment is clearly having some beneficial effect. We are still some 8 or more weeks away from a scan which can show us definitively what is happening to the tumor, but the outward signs are fantastic. Her nose no longer discharges blood-tinged mucus and she can sniff. This morning she smelled my cologne which took me by surprise (I didn't put on all that much, I swear). For the first time in more than a month, she sleeps quietly. She slept in our bed on Sunday night (cancer kids get special privileges, especially when it is 3:15 and they otherwise refuse to go to bed) and did not snore at all (I cannot say the same for myself, but one problem at a time). Thus, we know that her treatment is achieving some great results, but it only serves to make her lack of eating that much harder to take.

I fear that her eating won't improve until well after radiation finishes next month. I'm not sure her body can wait that long.

I'm off out of town again. Last week it was Memphis Wednesday-Friday, this week it is New York. It's therapeutic for me to concentrate on other problems and these trips more than deliver on the opportunity to do so. Still, I know that it makes things hard on Kris and I spend my down time thinking of T and her fight and dreaming of days to come when cancer will be a distant memory. Unfortunately, that remains a long time away.

Update from Kristin: February 14th, 2008

2008-02-16T11:14:00.000-08:00

The first night home was a huge success. Taylor was so happy to be home and was much more vibrant than I had seen her in weeks. She slept until 5:30 with her oxygen and came in because she needed to use the restroom. She took a little tylenol and went back to bed until we had to wake her up to go to radiation. She slept the whole time in the car so she missed the traffic. The radiation treatment was quick and we were on our way back home. She had some cereal and took a three hour nap. A side effect of radiation is pretty severe fatigue so naps will probably be a part of the routine now. We had a few visitors after that. Her head was bothering her a bit this afternoon but she seemed soothed by half a dose of her pain medication. Later she had more tylenol. I hope that her pain continues to improve. Some days will probably be better than others.

Charlie saw Taylor just briefly this afternoon and laughed and said,"T, your hair is messy!" She told him that wasn't really possible because she doesn't have any hair. He then laughed and said, "You look funny!" She didn't seem to mind but she doesn't pay attention to most of the things he says. We were worried that he would find her scary but he really didn't seem to care so that was a relief.

Keith left yesterday for a business trip to Memphis. He was so disappointed that the first time he has had to go out of town since Taylor was diagnosed, she returned home. He is anxiously awaiting Friday night when he gets back. We have radiation tomorrow and then the weekend off. She will probably have her chemo treatment on Tuesday which will take us back to the hospital for a few days. Keith will be gone for three days next week too so he will miss out on all of the fun. I think Taylor knows that she will have to go back to the hospital again, but I haven't told her exactly when. We don't need to talk about that quite yet. We are really looking forward to the weekend and hope she remains comfortable and can enjoy some of it!

Happy Valentines Day!

HEADING HOME! February 13th, 2008

2008-02-13T16:32:00.000-08:00

The word from the hospital is that Taylor is on her way home today! They are going to be heading home with an oxygen mask, as T's breathing isn't totally up to par, and Kristin has some concerns as she still has some pain and nausea. But hopefully being in her own bed in her own house will be beneficial to all. Keith is out of town until Saturday, so Kristin has her hands full, but I am sure she will update in a day or two. Until then, everyone send good, positive thoughts towards them so that Taylor's homecoming will be smooth and uneventful!

Update from Kristin: February 12th, 2008

2008-02-12T14:41:00.000-08:00

We are still here at the hospital. Taylor seems to be doing pretty well. She is losing her hair quickly and is pretty much bald on the sides. The hair loss coupled with the morphine has made her itchy.We have to change the pillow case about every two hours. The doctors are starting to talk about getting us home. They have switched her from the iv morphine drip to oral morphine. They said that since she has been on it for almost three weeks now, we will have to gradually decrease it since she is probably a little dependent on it.

The other issue that is delaying our return home is her nighttime breathing. She is still having little episodes of apnea. The doctors are trying to schedule her for a sleep study to see just how bad the apnea is and if she is able to wake herself or if she needs to wear an oxygen mask. She probably had the apnea for a few weeks before the hospital and many healthy people suffer from sleep apnea but we wantto take every precaution so that we all rest comfortably at night. She is scheduled for her next chemo early next week so that will require another stay in the hospital but I think it would do all of us good to get home for a few days.

We continue to go to radiation everyday. She doesn't seem to mind it too much. She looks forward to being put to sleep- that way she doesn't even know what is happening to her. Ignorance is bliss. We are told that the effects of radiation will begin to build and it will start to take more of a toll on her. That's fine as long as it takes a toll on the tumor too!

Update from Keith: February 8th, 2008

2008-02-09T15:29:00.000-08:00

For the first time since before Christmas, Taylor sniffled. It was the most beautiful sound I have ever heard, It means she is able to get air in through her nose, past her tumor. That was unthinkable only last week. Life is good tonight.

I started thinking about the progress that Taylor has actually made since we first got here (tonight is night 18). Being here every day, we miss the small things. If we were here only once a week (as if), her progress would seem much more momentous than the tiny steps that we see every day. Thus, it escapes us that she really is getting demonstrably better.

Since we first arrived, Taylor has stopped throwing up blood (although she is far from having stopped throwing up), she has stopped having constant (or even any) bloody noses, and she is now able to squeze the slightest bit of air through her nasal passages. All of these things are evidence that her therapy is working; the poison the doctors pump into her body is killing the even deadlier substance in her head.

Taylor has mostly been a treat today. She woke up a little grumpy for her radiation appointment early this morning. For whatever resaon, the hospital could not locate a wheelchair (!) to bring her down to radiation oncology. So, I improvised by carrying her downstairs. Both Daddy and Taylor love that method. I think I'll do it every time they let me. Taylor insisted on it when it was time to come back up to her room.

She apparently slept away the day until awakening at 3:30 and going to the playroom with Nana and Grandpa. She seemed very conversational when I arrived (although still sometimes grumpy; querying Grandpa at one point, "Don't you even think?") and we went to the playroom when it opened again at 6. She even ate 1 Chicken McNugget and 3 apple slices.

Tonight, she and I have had a great time. We cuddled on her bed while watching Zack and Cody and part of the movie, Chicken Little. At 11:10 PM we secured the nurse's permission to go downstairs to the McDonald's in the hopsital that is always open. I ordered a strawberry milkshake; she chose Vanilla. She said "Hi" to the passersby we encountered creeping through the hospital halls. I even felt sorry for the other parents walking by on their way to the Emergency Room with what loked to be sick kids. For once, mine seemed to be the best-off. It was a beautiful illusion (and one I have wholeheartedly immersed myself in).

When we returned to her room, we watched Return of the Jedi and sipped milkshakes. Dad and daughter at the movies.

I know cancer means steps back for each leap gained.. I know that lows always follow the highs. But tonight seems the highest of highs. The lows seem a universe away.

I am reminded of Churchill's words following El Alamein: "Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." I'm not even sure we are at the end of the beginning, yet, but I do know that we are on our way. That is more than enough for now.

Update from Kristin: February 7th, 2008

2008-02-07T22:18:00.000-08:00

Day 16.... I hesitate to write and admit this but Taylor has been doing very well today. The reason I hesitate to write this is our experience has been that for every one good day, we get two bad. The reason for the improvement? Drugs. They finally got sick of me running down the hall every ten minutes to scream at them.

We had nowhere to go but up this morning. Nana had been sweet enough to spend the night. Of course last night was the night that Taylor got a fever and spent every hour throwing up. That being said, there was plenty of room for improvement. The doctors have added another anti-nausea drug to her list of drugs. They also agreed to increase the morphine and bring back the pump. What a difference a few narcotics make. We have been blessed with great nurses today also. They both agree that we should treat the pain and nausea before they start. So she has not thrown up all day and she is sitting in bed coloring.

Taylor was able to welcome a few visitors today and she made a quick trip to the playroom. Tomorrow we have radiation again. The radiation oncologist seems to think that things are going well. He said he really believes that Taylor will be vastly improved at the end of her six weeks of radiation therapy. I asked him why she was having such bad headaches and he reminded me that the tumor has eroded her skull so she has a hole in the bone. I hope his prediction for Taylor is correct! We are ready for her to feel better. This has been the longest two weeks of our lives.

Here are some pictures of Taylor's new haircut. She looks very cute, I must say.

Before (Rocking the Hospital Hair):

Taylor and Nana and their new 'dos:

Kiss from Daddy!

Update from Keith: February 6th, 2008

2008-02-06T21:36:00.000-08:00

Today was a mixed day. There were some pretty good signs. Taylor was much more comfortable going down to radiation this morning and had no problem with any of the things they have to do to get her ready for anesthesia. That was a marked contrast from yesterday when she was really having an awful time down there. I'd like to think the improved attitude was due to her getting used to the routine, but I have a strong suspicion that the dose of morphine they gave her 15 minutes before we went down was the real reason behind her nonchalance. Opiates will do that.

Included among the not-so-good-signs was a return of frequent vomiting. She still won't eat and we have now gone since Sunday that she has eaten a meal. Since that time I think she has had half of a Kit-Kat bar and 4 french fries from McDonald's. She almost threw up the french fries. I wish we could figure out a way to eliminate her nausea in a way that does not increase her pain and which will allow her to eat again.

Speaking of pain, she continues to be clearly uncomfortable. She was in a bad mood most all of today because of it. Her pain will hopefully be a distant memory in just a couple of weeks as the radiation and chemotherapy begin having significant effects on her tumor, but we are not there yet. We're not even sure if the pain in her head is causing her nausea or if the medicines are causing the pain in her tummy. As to which pain is worse, it is hard to say. Regardless, she is very uncomfortable and it is hard to watch.

Taylor has had what we have dubbed "Hospital Hair" for most of the 2 weeks she has been there. Hospital hair is a matted, unkempt, bee-hive like fro that inspires comments from nearly all who see her. It was sop tangled that it made no sense to even try to comb it as it would just lead to pain. We have been waiting for her discharge to take her to a barber to get a buzz since she'll lose her hair anyway, but the nurses finally took pity on us and helped cut it short today. Her new 'do not only looks better but it will make things like putting on her oxygen mask late at night much easier. Plus, it's cute, in a cancer kind of way.

I know I'll get in trouble for writing this, but I am worried about Kris. She has been really down this week at the hospital. I think the combo of Taylor's continued pain plus not being able to take her home yet has really got her down. This whole thing seems only 16 days old to me (essentially beginning with the first CT scan on that fateful Tuesday) but for Kristin (and in reality) it's been around much longer. I was in France for 7 days when T really started taking a turn for the worse and I was in Baltimore when she started throwing up blood a couple of days before the CT. Thus, the burden of Taylor's illness has been on Kris much longer than I. She is especially sensitive to Taylor's pain and takes each discomfort hard. She eats little, sleeps less and (not surprisingly given T's condition) gets very down. The only long-term solution will be T's improved health, but in the short term I am going to urge her (us) to see a psychologist who specializes in cancer-families. The hospital has several and a couple others have been referred to us. In the meantime, please include Kris in your prayers, too.

Tonight Nana is staying with T, and Kris and I are home with Charlie. We went out to dinner at Charlie's favorite restaurant, Panda Inn (he likes the Pot Stickers). Everything was great until Kris got up to take Charlie to the potty which brought memories of Taylor and her love for going potty with Nana at Panda Inn into my mind. I'm sure the other diners were wondering why I was crying and I scared Kris on her return as she thought I must have heard some bad news. Nope, just a temporary loss of control.

Tomorrow is Taylor's third radiation treatment. I've been going to work each day this week, although on a shortened schedule. I'll be with Kris and T for her radiation appointment and then go to the office once she is back in her room. Then, it will be back to the hospital in the afternoon. It's wonderful therapy for me to get back to work. The closer we can get to our pre-cancer schedule, the easier everything will be.

It's great to be home with Charlie and Kris tonight, but it is a lonely house without Taylor. I can't wait until she comes home.

Update from Kristin: February 5th, 2008

2008-02-05T19:57:00.000-08:00

So we have successfully completed our first radiation treatment. I would have to say that Taylor was less than enthusiastic about the whole thing and would probably not be encouraged by the fact that there are 27 more to go. They put them to sleep so it really shouldn't be too traumatic once she knows what to expect.

Taylor is still quite uncomfortable. They removed the drip and tried to decrease the pain meds but she just wasn't ready and the pain got out of our control and we have had a hard time getting a hold of it again. Much of the day is spent trying to convince the doctors that she is in pain. They are concerned about her breathing, which obviously is very important, but we don't believe that the morphine is what is causing the breathing problems. It is much more likely the very large tumor that is blocking her airway. We do understand that the combination of morphine and the tumor causes problems. We just hate to watch her in pain because all she can do is lie in bed and stare at the ceiling. The good news is that the doctors expect that with the combination of chemo and radiation, the pain and breathing should resolve themselves within another week. Please pray for that!

The rest of this week will be filled with radiation and hoping and praying for improvement so that we can get home. Her white cell counts are very low now so we also have to hope that she doesn't get an infection. Kind of seems like if it isn't one thing, it is another these days.

Weekend Update from Keith: February 4th, 2008

2008-02-04T12:05:00.000-08:00

We learned a truth about Taylor's fight with cancer this weekend: for every three steps forward, there are apt to be two steps back. Sometimes, there may be only two steps forward and three steps back.

After we enjoyed a wonderful Thursday afternoon/evening and all day Friday with a smiling, happy, enthusiastic T, Saturday was a marked difference. She threw up over night and they gave her anti-nausea medication that caused her to sleep most all day Saturday. She was back to the Taylor that she had been earlier in the week--in pain, overly sedated, and non-responsive. In addition, her breathing difficulties resumed.

We've learned that the secret to improving Taylor's spirits is getting her out of bed no matter how much we have to fight her. Keith forced her to get up and go downstairs to play games that we had checked out from the playroom on Taylor's floor. Taylor won games of Dora Checkers and quite a few games of Connect Four before returning to her room. Her spirits brightened and she even decided to order a pizza for dinner from the hospital cafeteria. Her Nana (Keith's mom) spent the night with her on Saturday and Keith and Kristin were able to go out to dinner and then return home together for the first time since Taylor arrived at the hospital. Charlie loved having both parents at home on Sunday morning.

Taylor took 2 steps back again on Sunday; she threw up overnight and didn't feel well much of the day. Keith is coming down with a cold and left the hospital for a few hours (conveniently coinciding with the Super Bowl) and Taylor became sad that Daddy was not there. Uncle Kirk and Aunt Brooke visited, however, and Taylor's spirits brightened considerably. Keith returned and Mom, Dad, and T went downstairs at 9:00 and played eight games of Uno. Taylor went 5-3 in those games (Mom won once and Dad twice). She was back to being her old, happy self and Mommy and Daddy loved seeing it.

Taylor received a blood transfusion on Sunday. This was to raise her hemoglobin levels in preparation for Monday's first dose of radiation. She will require anesthesia for Monday's radiation, as with all 28 sessions of her radiation treatment. Normally, the protocol for Taylor's cancer would not include administering radiation this early in treatment. She must have it now, though, because of the tumor's proximity to her brain. We are trepidatious about what side effects her radiation will bring. Although we know there are many more steps forward remaining in this process, there are also a considerable numbers of steps backward, too.

Taylor is still in the hospital. Until her breathing during sleep improves, she will continue to be at the hospital. We badly want her to return home, but we are scared that she may have breathing difficulties at home during sleep which will go undetected. At the hospital she is constantly monitored and nurses come in when her oxygen saturation falls below certain thresholds. We cannot duplicate those levels of protection at home. Thus, we remain a broken family for now; broken not in spirit but in location. Hopefully, we will all be reunited soon.

Mini Update: February 3rd, 2008

2008-02-03T22:18:00.000-08:00

The following are bits and pieces taken from some emails from Kristin over the weekend:

Saturday was a so-so day - Taylor threw up in the morning and then slept all day until 4pm. She was in good spirits in the evening, until they gave her some vicodin and she threw that up too. They are trying to get her off the morphine pump and onto oral pain relief. Kristin is unsure that she is ready for that.

Sunday was blood transfusion day. They say it might help make her feel a little better too. She is off the morphine drip so the hope is that her breathing situation will improve a bit. She is starting to sound a little more clear to K, but there is still a long way to go.

Radiation starts Monday morning. As Kristin says: "I am kind of glad about that because it will continue killing some of those tumor cells and hopefully bring her even more comfort."

Check back for a more detailed update on Monday afternoon re: the blood transfusion and first day of radiation. Sweet Taylor is being SUCH a trooper and brave girl. It is amazing how well she is coping with her situation. GO TAYLOR!

Update from Kristin: February 1st, 2008

2008-02-01T17:32:00.000-08:00

Today was a great day here at the hospital. Taylor was awake this morning and has been all day. Considering the fact that we pretty much had to throw water on her face in the days past to get her to wake up, we feel that this is great progress.

She has been to the playroom twice, ate half a sandwich, drawn in her "diary", and has taken a bath! It was such a delight to see her singing in the bathtub. We have all enjoyed having the "old" Taylor back with us.

She will begin radiation on Monday. They are fairly certain that she will need a blood transfusion on Sunday because her hemoglobin is a little low and they need it to be higher for radiation. She is also still having a few breathing problems when she sleeps. They said as soon as her breathing problems resolve, she should be able to return home. We don't expect we will be out of here before she beings radiation on Monday and that is fine. We are just happy to see her bouncing back. Keep your fingers crossed that things continue to improve!

Message from Keith: January 31st, 2008

2008-01-31T21:22:00.000-08:00

Today was mostly a great day. The only bad news was that Taylor's breathing troubles have resurfaced. It's not surprising since her tumor blocks her airway when she sleeps, but it was disappointing to see her oxygen saturation levels plummet at times again today after afew days of not doing so. This is a problem which will delay her discharge from the hospital.

Now for some good news: Taylor ate and drank a little today without throwing up at all. She has not had any vomiting.

Now for some great news: For the first time in many days, Taylor got out of bed. We insisted that she go to the playroom down the hall this afternoon. She did not want to go and tried to delay by staying in the bathroom for a considerable amount of time after waking up. Once she emerged, though, I made her accompany me to the playroom.

Once there, she had a great time. She smiled for the first time in many days. She beat her dad at Memory, Uno Spin, and Candyland before we had to return to her hospital room because the playroom was closing. She told me that she wanted to return tomorrow when it opens again. It was precious to see her happy again, albeit briefly. I hope we see more of that in the days and weeks to come.

Message from Keith: January 30th, 2008

2008-01-30T17:59:00.000-08:00

Yesterday was a hard day for Taylor. Periodic vomiting from Monday's chemotherapy was the order of the day. Taylor would wake every 2-3hours and have to go the bathroom (her chemo drugs can have nasty effects on the bladder, so they over hydrate her so she will urinate frequently enough to keep the drugs from staying in her bladder). Each bathroom trip was accompanied by vomiting.

Oddly, Taylor did not seem too affected by the constant nausea. No crying at all. It's terrible to watch as a parent, but T was a trooper. After she finished throwing up and going to the bathroom, she'd lapse back into sleep.

Until today, Taylor had essentially been asleep since her chemo treatment on Monday afternoon. She has been so sedated that one of her doctors grew concerned and decided to diminish the amount of morphine she has been getting. Kris and I were torn about this. I wanted T to be more alert, Kris wanted to spare her the pain. Because I was in France for a week earlier in the month and out of town right before T finally went to the hospital, I haven't been with her through her awful head pain as Kristin has for 3 weeks. Not surprisingly, she is far more sensitive to Taylor's pain than I, and far more concerned about alleviating it. In the end, we decided to lower her morphine dose with the hope that it would result in her becoming more alert.

It was a tough day for Kristin yesterday. Taylor's heavy sedation, her pain and her frequent vomiting was almost too much for either of us to bear. I kicked Kristin out at 1:30 which turned out to be great. For the first time since Taylor came to the hospital on 1/22, Kris was able to pick up Charlie at day care. That was a wonderful moment for both of them. On the way home, Kris took Charlie for a drive through our neighborhood which is something both of the kids love to do. It was one of those moments, though, that emphasized Taylor's absence and Kristin cried.

Overall, yesterday's early homecoming turned out to be a good thing for Kris. She was able to spend plenty of time with Charlie which was important for both of them. Brooke, our sister-in-law, came over and they watched something on TV, while Charles kept sneaking down after his bedtime to be with his Mom. She also got 7+ hours of sleep.

I didn't sleep much here at the hospital last night. I didn't want to be asleep if T needed me to help her to the bathroom or bring her the bucket for her vomiting. She was up every 2 hours or so to do both of those things.

This morning we went down to the radiation oncology office for the first time. Taylor had to be scanned and fitted for various devices that assist in irradiating her tumor. To do this, she needed complete sedation so an anesthesiologist was there to put her out. They also had to give her a breathing tube because of the airway obstruction from the tumor. The radiation oncologist shared the detailed CT pictures he took this morning and showed us each feature. For the first time, I have a good idea of where her tumor is. It is essentially behind her nose, resting on the roof of her mouth. As it has moved back in her head, it has grown downwards so that once it clears her soft palate, it goes down and blocks her airway. The tumor is much further below her eyes than I originally thought. It's also a lot bigger than I thought. It was hard to see that evil mass inside my daughter.

Taylor was extremely grumpy after waking up from the anesthesia. We got back upstairs and she got to see Kristin's dad who flew in from his home in Vegas. She was happy to see her Papa, even if she was still grumpy from the morning's events. Beginning at 2:00 or so, Taylor has been awake. This is the first extended period of wakefulness she has had in over 48 hours. Her vomiting has subsided, although not entirely. Her O2 saturation has been great the last 24 hours after a troubling time on Monday. She is watching one of the Star Wars movies and is much less grumpy. She even ate half a popsicle after some effective cajoling by the peds resident.

We feel like her speech, which has been affected for a month by her tumor (of course, we thought it was a cold for most of that time) has improved today. We might just be reaching for any hopeful sign even if it is just our imaginations, but it makes us feel better, anyway. We are encouraged that she is staying awake longer and hoping that we can be discharged on Friday. Of course, her pain, airway, and nausea all must be under control for that to happen. Plus, we'll be back here at 8:45 every morning next week for doses of radiation (all of which must be administered under anesthesia), so it is not as if we will be leaving this place for long. Still, I yearn to have our whole family back under one roof. I think Charlie, Taylor, and Kris do too.

The Freezer is Full!

2008-01-30T14:41:00.000-08:00

Thank you to EVERYONE who has dropped off food to Taylor's house in the past week. I have just received a report that the freezer is stocked...as in, there is no more room for food! This is great news, and much appreciated by everyone. When the reserves get depleted, I will add some tasks to the Help Calendar so that people can bring by freezer-friendly meals. In the meantime, feel free to check out the available dates to bring a table-ready dinner to the family once Taylor is home from the hospital. Thank you, everyone! Kristin and Keith and their extended family all appreciate the kindness that has been pouring in from all sides.

Message from Keith: January 29th, 2008

2008-01-29T13:40:00.000-08:00

Today marks Taylor's one week anniversary at the hospital. It's a weird sort of half-life here. Time passes, but it is as if we are outside of it. Day, night, dusk, dawn, all meld together into a blurry existence. This one week feels like a lifetime. We have many lifetimes to come.

I feel like we turned a corner yesterday. Before yesterday, every piece of news we learned concerning Taylor's condition was bad. Certainly, yesterday's confirmation that her tumor is inter-cranial continued that streak. But, we finally learned pieces of good news. Despite being inter-cranial, the tumor has no brain involvement. Moreover, after extensive imaging studies of her head, neck, spine, chest, abdomen, and pelvis, there is no evidence of metastasis anywhere. That makes a huge difference in our outlook and, more importantly, in Taylor's prognosis. Even better, she finally began her treatment which brings us every day closer to a cancer-free and(hopefully more immediately) pain-free Taylor. It is her pain that has caused us the most worry over the last week.

We finally consulted both the oncologist and radiation oncologist yesterday. I will not rehash the oncologist consultation because Kris already has. The radiation oncologist explained the five-day-a-week regimen of radiation she will receive for 28 sessions. Unfortunately, because of the location of her tumor, they must irradiate otherwise healthy brain cells to stop the spread of the disease and ensure its eradication. She will face life-long side effects. Her adult upper teeth will likely never appear, save a few in the front. Her pituitary gland will likely cease working necessitating thyroid replacement therapy and possible doses of growth hormone as she ages. Her ability to mentally process information quickly may be stunted and she may have to take untimed tests, for instance. She may have trouble with memorization. The growth of her cheek bones may be stunted. Her overall treatment may last only 42 weeks, but many of the side effects will be issues for years to come.

It is hard to consign Taylor to the fate that her radiation and chemotherapy will cause. These are choices parents should never have to make. We have no option, though, if we want to preserve her life (and believe me we do!). The silent malevolence growing in her head has seen to that.

Today has been a hard day because Taylor has thrown up a number of times; side effects from yesterday's chemo treatment. In keeping with the turning the corner theme, however, she has stopped throwing up blood. Although there were considerable amounts the first couple of times she threw up, the last time was blood-free. Another bit of hope.

It is impossible to express how thankful we are to all of the people who have extended prayers, good wishes, and offers of help. We will never be able to adequately acknowledge your generosity and articulate our thanks in a manner commensurate with all of the love we have received. All I can say is thank you all from the bottom of our hearts.

1st Day of Chemo: January 28th, 2008

2008-01-29T10:03:00.001-08:00

I think everyone will be happy to hear that Taylor had her first Chemo treatment on Monday. It makes the feeling of helplessness decrease slightly, knowing that something is directly being done to get rid of the tumor. Taylor has a pic line (sp?) in her arm that they used for the chemo. Kristin reported that Taylor was having some nausea last night, but they are unsure if it is a side-effect from the chemo already, or just residual from everything else that has been causing it (morphine, blood in the stomach). Aside from being awful to throw up anyway, they have the added complication of Taylor having an oxygen mask on that they have to quickly deal with when she gets sick.

Taylor will also have radiation 5 times a week for the next 6 weeks. Because of the need to remain absolutely still when receiving radiation, children are put under anaesthesia each time they get it. I know most of us parents can not imagine the stress of having our child go under one time, let alone 30. But it is obviously a great tool of medicine that is serving a much greater purpose in this case. I know we will all be thinking of Taylor each and every time.

As mentioned in earlier posts, the chemo and radiation could relieve Taylor from some of the pain she is suffering as soon as the end of this week. Kristin suspects that if she doesn't have considerably less discomfort in 2 weeks, they will check her again to make sure the treatments are working as planned. Everyone is anxious for Taylor to be out of pain as soon as possible and back to her old self. Keith reported that when he stayed with her 2 nights ago, she had a period of about 3 hours that she was up and feeling less discomfort and being herself, which was great.

Email from Kristin: January 28th, 2008

2008-01-28T12:35:00.000-08:00

We finally have all of the news on Taylor. They were able to expedite the MRI and it was done yesterday. Squeaky wheel gets the grease! They were trying to see if the tumor was intercranial and if it was in the brain. There had also been a spot on the bone scan on her spine that they needed to confirm was not cancer. The results show that the tumor has gone through the cranium and is pushing up against the brain. The good news is that it does not seem to have invaded the brain. We are very glad that we pursued the MRI as we did because itis just sitting right there waiting to pounce! The other good news isthat the spine is clean! We were relieved to hear this.

Today we will begin chemo. I am excited that we will finally be working to make the tumor smaller instead of sitting around every dayas it grows bigger. She will probably feel pretty lousy for a while.They expect that the pressure in her head and the breathing issuesshould decrease by the end of the week. We need everyone's prayers that the chemo and radiation will work. Due to the fact that the tumor is intercranial, they will start radiation this week. They have found that it tends to control the growth by starting early.

Thank you to everyone that has sent their well wishes and offers of support. Please keep Taylor in your thoughts and pray that the chemo and radiation are effective. If her blood counts are okay, she might love some visits early next week!

E-mail from Kristin: January 26th, 2008

2008-01-28T10:08:00.000-08:00

So we finally have the results of the biopsy. As suspected by the doctor, this is a rhabdomyosarcoma. The tumor has invaded the bone and they believe that it might also be invading the brain. On Friday we were told that she was going down to MRI to have pictures taken of her head and neck. They got her down there and then learned that she would need to be intubated during the procedure because they sedate the kids for this so they don't move. They then returned and said they also need spine pictures and they didn't have time for that and sent her back upstairs. We later learned that there might be a small metastisis on the spine that showed up on the bone scan but most of the doctors believe it is an "artifact" from a prior injury or something.

They cannot start chemo until they get pictures of the brain. If the tumor is invading the brain then they need to start radiation and chemo at the same time. They do not do MRIs with sedation on the weekends and we were told that the first available time they had would be able to do it is Tuesday. That was not acceptable to us, so we made every effort to find someone or somehow to do it before, We were able to get it moved to Monday, I think. So this weekend we are praying and trying to keep her comfortable.

Taylor has a very serious tumor in a very serious spot and if it has moved to the spine, that adds another serious complicating factor. There is also good news, though. This particular type of cancer is very sensitive to chemo and radiation. She is young and healthy (other than the cancer thing) and she is at one of the best places in the world to treat this. She should start chemo on Monday or Tuesday and the doctor thought that she would have some relief from the pain and pressure by Friday.

We hope that everyone can continue to keep her in their thoughts and prayers. We are soooo lucky to have so much support from our friends and family. We see many single mothers down here trying to tend to their sick child and also have another child on their arm with no one to help them. We are fortunate to have an army of people cooking, cleaning, caring for Charlie, and offering us relief at the hospital-what a difference that makes!! I will send out more updates when I hear things. We are try to keep smiles on our faces for Taylor but I think she is onto us!

E-mail from Kristin: January 24th, 2008

2008-01-28T09:59:00.000-08:00

I am not sure if I have told all of you but the annoying sinus infection was not a sinus infection at all. The doctor finally had a ct scan done of Taylor's head (on Tuesday, January 22nd, 2008)after she began throwing up blood and was more congested than ever. The ct scan showed a mass in Taylor's throat. They sent us right over to the ENT doctor who reviewed the slides and decided that it was probably a tumor. They sent us to Children's Hospital and Taylor was admitted to the oncology floor. It was obviouslyfrightening for all of us and we had the added benefit of having Taylor throwing up eight times- tinged with blood. She is just so lethargic, in EXTREME pain, and not herself at all.

Today was the biopsy. We were scheduled to be picked up at 8am for a 9:00 surgery. It turns out that we were picked up at 2 for a 3:15 surgery. Taylor was not allowed to eat or drink anything but I don't think she would have wanted to anyhow. She was so afraid and cried, kicked, screamed, and told us she was just NOT going to have surgery. It broke our hearts to have to force her to be wheeled into an operating room with neither one of us with her where they performed a biopsy, implanted tubes in each ear to drain all of the fluid that had collected in them (she could hardly hear anything), insert a pick line into her arm, a lumbar punch and a bone marrow test, especially knowing that after it all she wouldn't even feel better.

The last few days had been very hard because they were only allowing her to take tylenol because of the surgery and swelling in her throat. They were afraid that she would stop breathing if they gave her any narcotics because they slow breathing and her throat wasc losing up. She has to wear an oxygen mask all of the time. We also could barely understand her because of the swelling in her throat which really frustrated her. During the biopsy, the surgeon was able to scrape her throat so she is a bit easier to understand. They said it will be two or three days until the results come back. The surgeon says he has a very strong hunch that it is a rhadomyosarcoma but we will not know for sure for a few days. I am told that those tumors respond pretty well to radiation and chemo. The unfortunate thing is that they probably will never be able to operate on this because it is going to be far inbedded in the head and that often leaves a few stray cells wondering through the body.

We are going to be doing a number of scans today to see if there are any other tumors present elsewhere. Feel like I have been there done this before! Hopefully we will be able to start chemo late this week or early next! This child needs some relief!

Thank you so much for all your thoughts and good wishes. Please continue to pray for Taylor, we have a long road ahead of us.