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 23rd, 2008
Update from Keith: August 17th, 2008
Taylor is a very sick little girl. She has been in the hospital since early Thursday morning. Last night (Saturday night; technically Sunday morning), Taylor was transferred to the Pediatric Intensive Care Unit (PICU). When we got there, Taylor turned to us and said, "I'm scared."
It's a scary place. For some patients, the PICU represents the last stage of a declining life. Taylor arrived with an extremely elevated heart rate, one lung full of infection, and a fever so high it maxed out the thermometers the hospital uses. We were scared, too.
Taylor's fever began at 4 am on Thursday morning. I had to fly to Phoenix later that day, so my Dad went down with Kris to the Emergency Department. They spent most of the next 12 hours there. Taylor's fever remained strong despite doses of antibiotics. This is abnormal for Taylor; generally her fever recedes not long after she gets antibiotics and fluids. Nothing seemed to work this time.
That night, my Mom stayed with Taylor. Early the next morning, Taylor threw up violently. So violently that she threw up her NG tube. This is a significant problem. Not only was the NG tube the only source for Taylor's nutrition, but it is the only way to deliver oral medicines to her. With her fever continuing to rage, she needs Tylenol through her tube. That has not been an option since Friday morning.
Taylor's fever consumes her platelets voraciously. Her platelets have been far too low to attempt surgery for placement of a new tube. I can't say when it will be replaced. For now she gets nutrition intravenously. Intravenous feeds are a long term problem but a short term solution. Hopefully her platelets will improve and they can replace her tube this week.
After her fever continued unabated Friday, the doctors took a chest x-ray on Saturday. I spent most of Saturday with her. For most of the day her fever exceeded their ability to measure it; the thermometers they use to record her vitals only go to 40.5 (104.9) and it recorded that level for her nearly every time. We used cold packs and cold washcloths to try and cool her off. She suffered chills, though, which made that difficult. While her trunk and head are burning up her extremities are cold to the touch. Her feet, especially, have been cold. They gave her medicine to try and reduce her chills. It worked intermittently.
She went back on Dilaudid for her pain starting Friday. She has the ability to push a button every 30 minutes which will deliver her a dose of Dilaudid. She's clearly uncomfortable all of the time because of her fever, but the Dilaudid has seemed to help her head pain.
When the chest x-ray came back on Friday night it showed one lung with considerable infection. Her platelets are way too low for anyone to send a tube into her lungs to identify what infects her. They believe it to be fungal so they have started her on anti-fungals. These fun drugs have symptoms not unlike chemo. Following that diagnosis, it became clear that she would need anti-fungals, red blood cells (to help her infected lung carry oxygen around her body), platelets, antibiotics, and close monitoring because of her fever. The sheer number of nurses needed to care for Taylor (she had three for most of the evening Saturday), combined with how sick she was necessitated the trip to the PICU.
In the PICU T developed diarrhea (who knew that was possible even without anything going through her gastro-intestinal tract). This just added further insult to injury.
Taylor turned a bit in the PICU, though. Enough that they sent her back upstairs earlier today. She's even had a few readings that are not considered feverish. Her heart rate has slowed from a resting rate in the 160's to the 110's where Taylor has often been during her cancer. She is still uncomfortable. This has been really hard for her.
Both Kris and I spent Saturday night at the hospital. I stayed by Taylor's bedside; Kris went to a parent room and caught 3 and a half hours of sleep. I slept during the day and went back to the hospital. Kris is spending the night there again tonight.
Poor Charlie has been lost in this. It breaks my heart. Every time I come home I get huge hugs. When I look to leave, he clings close by hoping I'll stay. I'm sure it's even worse for Kris who's Charlie's favorite. He's off of pre-school the rest of the month. It's going to be hard for him.
I have no idea how long Taylor will be in the hospital. I've heard 10 days is a possibility. That would take us virtually to the next scheduled chemo. I just want her to get better.
Everything had seemed to be going so well. This is a terrible reminder of what can happen. Everything feels like it did back in January, February, March. Hopefully they are right and this is a fungus which the drugs, along with her white blood cells (which should rebound soon), will resolve. I can't consider the alternatives.
Update from Keith: August 7th, 2008
I purposely waited a week to update the blog. I didn't want to post another update when I was still cranky about an experience in the Emergency Department. No more "circle of hell" blasts or poking fun at doctors. Unfortunately, waiting a week hasn't done the trick. I am still cranky.
Last Wednesday Taylor got another fever. She's had a lot of fevers this cycle. The good news this time was that she actually demonstrated an ability to get a fever before 11:00 at night. Even better, it was 6:15 when Kris discovered Taylor's fever. She called me at work and I agreed to meet them at the hospital. Thus began another Emergency Department odyssey.
Discovering Taylor's fever so early in the evening seemed a really good thing. Whether she needed to be admitted or could come home, things seemed teed up just right for us to be able to get a decent night's sleep. If she would be admitted, hopefully we could accomplish that early, by 10 or so, and one of us could spend the night with Taylor and sleep in her room upstairs and the other could go home. Likewise, if she was sent home, hopefully they could treat her with a course of antibiotics and discharge us before 11 so we could be in bed by midnight. Either way it seemed like events were timed perfectly to allow us a good night sleep. We were so confident, we didn't even bother with dinner, figuring we would have time to eat later. I was so confident that things would unfold smoothly for once that it bordered on hubris.
I arrived at the hospital just before 7:30. My Dad drove Taylor and Kris down and I met them in the hospital driveway. I lifted Taylor from her seat, Kris lugged our stuff out of the back of the car and we entered the hospital. My Dad went back home to pack for a trip he and my Mom were taking the next day. Charlie spent the night with my brother and sister-in-law.
Things went pretty smoothly at first. We quickly gained access to the triage area. Having been there twice in the last week or so, the triage nurse recognized us and immediately evaluated Taylor's condition (ahead of a few other kids in line). Taylor's fever raged. I think it was in the high 39's (103 something). That didn't seem good. The triage nurse finished processing Taylor, administered some Tylenol to quell her fever, and admitted us to the Emergency Department.
I immediately recognized the room she was assigned. I had spent 30 hours or so with Taylor in that room back in February or March. That was a miserable trip where we were stuck waiting for a bed upstairs and Taylor just felt awful. There's no parent beds (or even comfortable chairs) in that room, so I caught fitful minutes of sleep when I could. I remember trying to watch a DVD on the TV in the room and it kept stopping after each 30 minutes or so. At least now there was a sign in the room explaining why: "This DVD player overheats halfway through any movie. Please turn off the TV, wait a half-hour and resume playing to finish your movie." (The sign would be more accurate if it said that the DVD player overheats every 20 minutes, but whatever). Being back in this room was no happy reunion.
Not long after we got settled, the resident came in. She was very nice. She remembered having seen Taylor the Thursday before (when my Dad and Kris brought Taylor down and she was admitted for the weekend). That made things a lot easier. She took a history without asking anything about Kristin's pregnancy or Taylor's birth (this was a real breakthrough; I'm starting to think they read the blog). I explained that whether she would be admitted or treated and released, I wanted the decision to be made sooner rather than later for the comfort of all of us, including Taylor. The doctor agreed with that plan and left. She ordered a cbc, some antibiotics and some fluids for T.
The first step in the treatment plan involved the nurse accessing Taylor's port. Because Taylor had just been released from the hospital on Monday night (2 nights before), her port proved difficult to access. (For whatever reason the nurses always seem to have more trouble accessing her port if she has recently been de-accessed; I don't know if there is scar tissue that forms or some other explanation but this has been our experience). The nurse got the needle in, was sure it was in the right place, but there was no "return," i.e. no blood came flooding out as he pulled out the stopper in the syringe. His solution was to rotate the needle in Taylor's chest and keep trying to get a return. He kept at this solution for 5 minutes or more despite Taylor's crying and discomfort. Finally, we convinced him that he would have to pull it out and try again. He agreed and called another nurse in for the second try.
The second try worked. Taylor was very brave and hardly flinched even after all of the pain from the first try. She was just relieved to have it finished. It can't be fun to be feverish and have people poking needles in you, twisting them all around, pushing them in and out all the while propping her up and keeping her from getting comfortable. I was really proud that she was so good about the second try.
They took her blood and it came back that her white counts were actually pretty high for her. They had gone from 780 on Monday to 9. To we laymen that sounds like a sharp decrease, but to medical professionals it's a substantial increase. It turns out that in medicine 780=0.78. I continue to contend that medical practitioners create a ridiculous jargon to prevent the rest of us from making meaningful contributions to our care (or the care of our loved ones in this case). Changing around numbers just seems to me another way to accomplish this. The upshot of her new count was that she was not neutrapenic. This meant that they could release her after completing treatment.
Thus, they gave her a course of antibiotics. They also gave her a "bolus" dose (more ridiculous jargon indicating a larger than normal dose; next time I go to McDonald's I'm going to try ordering a bolus Diet Coke and see what happens) of fluids. Typically when Taylor is in the hospital she gets IV saline (actually I think it's potassium chloride now that I think of it but it's some type of clear fluids that comes in a 800 cc bag) at a rate of between 60 or 70 cc's per hour (this is true if she is not on her feeds; if she is on her feeds she gets hydration from that as well so they turn down the fluids). The bolus they gave her was 400 cc's per hour and they let it run the entire hour.
By the time she finished the bolus and the antibiotics, it was around 11:00. We were ready to go. All that remained was taking Taylor's vitals, getting the doctor to order the discharge, and de-accessing her port. The nurse came in to take her vitals so the doctor could order the discharge. Taylor's blood pressure was low. Moreover, her heart rate was elevated (it was in the 120's) and her fever was back after being gone for a few hours. These were worrisome signs.
In retrospect, I should have spoken up at this time and demanded admission. I didn't. We were focused on getting home. It was late. The path of least resistance was to listen to the doctor's orders and follow them. I stumbled down that path.
The doctor took a look at Taylor's numbers and ordered another bolus. Keep in mind that this did not happen instantaneously. There are a lot of kids in the ED on any given night. Some have traumatic injuries which obviously take precedence. By the time the nurse learned that the doctor ordered another bolus and actually started it going through T's veins, it was midnight, or maybe later. We kept the lights off in the room as Taylor slept on the exam table (Kris knows by now to bring a pillow from home as they lack pillows in those rooms). Kris and I sat in the silent dark as the fluid flooded in to Taylor's veins. I also watched Return of the Jedi in 20 minute bursts (this is all the overheating DVD player would allow). As the hour wound down, I actually ejected the movie from the player and prepared to go home. It was late. At least we could still salvage some sleep from this night.
When the bolus finished we turned off the alarm on the pump and let the nurse know. It took him a while to talk to the doctor. The nurse knew we wanted to leave and he did the best he could. Finally, he took her vitals again to prepare for discharge. Uh-oh.
Taylor's blood pressure was a little better (after all they just pumped in 800 cc's of volume into her veins over the course of a few hours) but her heart continued racing. Her temperature was borderline. The resident came in. She wanted to give Taylor another bolus. By now it was after 2 in the morning. Another bolus sounded ridiculous. I put my foot down and said no way. I told the resident that I didn't think treating her with another bolus was a good idea and that I thought she should be admitted. The resident didn't know what to do. She summoned the attending.
The attending came to see us for the first time that night. He started off saying something to the effect of, "I'm here to convince you why getting another bolus and leaving tonight is the right course of treatment." His arguments essentially were that the bolus would work and she'd be able to go home rather than stay in the hospital.
None of this made sense to me. Is there a class on stubbornness in medical school? The bolus didn't work the first time, didn't work the second time, and now they thought it was some panacea the third time? I didn't have to go to Harvard to figure out that if it didn't solve the problem the first two times, it wasn't going to work the third.
I'm trying to get better about calling them names or bad-mouthing the ED. I have come to realize that the ED at CHLA is a fabulous place to bring your child if he or she has a broken bone, or a traumatic cut, or for any of the things that parents want to bring their kids to an ER. It is not a good place to bring your kid if she has rhabdomyosarcoma.
Wasn't Einstein's definition of insanity, doing the same thing over and over again and expecting different results? There, I didn't say it; Einstein did. Einstein called the ED doctors insane. Treating her with a third bolus was insane (again this is Einstein saying this, not me).
I had a spirited discussion with the attending wherein I indicated that I thought Taylor was better served by admission to the hospital. She could move upstairs to 4W where the nurse and doctors are used to treating kids who present her symptoms and who have similar problems. Moreover, they clearly felt that she couldn't leave the hospital yet (her heart was racing) so all would be better off if she spent the night upstairs where they could monitor her carefully and ensure that she was OK. I also told him that I thought treating her with an additional bolus was ridiculous. (I didn't mention what Einstein said about him.)
The attending was in the rather bizarre position of explaining how much better off Taylor would be by not spending time in his hospital (where she spends virtually every weekend anyway). We went back and forth for what seemed like a long time both reiterating the same points: he claiming that a third bolus and discharge was the answer, I maintaining she should be admitted. Finally, I told him that I couldn't admit her myself even though I thought it the best option and that clearly he wasn't going to admit her and I could not make him do so. Therefore, I told him, let's just get on with it.
Kris spoke up then. Earlier in the night they had placed leads on Taylor's chest to monitor her heart and respiration. Since they cited her elevated heart rate as the need for bolus three, Kris felt T's heart should be back on the monitor. The attending agreed. That's when he saw that Taylor's pulse ox was hovering around 90. That's low. Doh! Guess what, she needed to be admitted (who's your daddy, now?).
Still, the wheels turn slow at the hospital. They started bolus number three. The attending was called away and I think too scared to come back and confront me as events had proven me right. Instead, he sent another resident over to take a history to prepare for T being admitted.
While she didn't ask about Taylor's birth experience or Kristin's pregnancy with T (another small victory) her questions were mostly asinine and reflected her failure to read even a sentence of T's file. An example: Her: "She has a regular diet, right?" Me: "If you call Peptamen Jr. through an NG tube a regluar diet then yes." Her: "Oh, I'm asking about the food she eats through her mouth." Me: "She hasn't eaten food through her mouth since January." In fairness, I think she had already heard that I had faced (in the 80's meaning of the word) the attending and she seemed cowed the moment she began talking to me. To me it was just another useless ED Taylor medical history. It's the rhabdomyosarcoma, stupids. (That's Carville talking; again not me).
They also took a chest x-ray (after all, what's a trip to the ED without a chest x-ray). This time it was good that they did; it showed that Taylor might be developing pneumonia in her lungs. This just furthered the need for admitting her.
I finally left just before 5. Taylor and Kris were still in the ED waiting to go upstairs. I confirmed that someone would assist them in transporting upstairs before I left, but I had to go home. I had to get some sleep before work. When I finally went to bed just before 6 I had been awake for 24 hours (it was the same for Kris at the hospital). I spent nine and a half of those hours in the ED. My initial giddiness at discovering Taylor's fever so early had long since vanished. It merely served to subject us to further insanity. (Einstein really should stop that).
The next day the hem/onc doctor who saw Taylor mentioned that treating her with so much fluid probably exacerbated her condition, not helped it. I'm not surprised.
Taylor spent the next few days in the hospital, including last Friday which was Kristin's birthday. Taylor was discharged midday on Saturday, though, so we finally got to spend a weekend (or at least most of a weekend) at home as a family. This week has mostly been good for Taylor. Her mouth is a little worse than usual. The doctor noticed a huge scab at the back of her mouth when she was in on Tuesday. She is throwing up a bit more than usual for a third week, but it seems to be due to mucus in her throat rather than any nausea. Her spirits have been great, though.
Friday is another chemo day. Those are hellish nights. None of us look forward to it. Another child died this week. It's a sobering reminder of the fiendish nature of Taylor's disease.
Update/Retraction :) from Keith: July 25, 2008
So, my better half has convinced me that writing a blog entry on two hours sleep as I did in my last contribution was likely unwise. I admit I was extremely cranky and carried things much too far.
Thus, CHLA is decidedly NOT the "eleventh circle of hell." Of course, there have been bad moments that we've had there: Taylor was diagnosed there and all her sickest moments have been spent there. The reality, though, is that CHLA is much more heaven than hell. The dedicated doctors and nurses who work there are the reasons that Taylor has fought her cancer so successfully. So while I probably tend to air out the negatives rather than the positives in my blog entries (after all this is a welcome form of release to me), be assured that we are thankful every day that Taylor is a CHLA patient and that we would not have it any other way.
Similarly, my blog entry may have made suggested that the Emergency Department doctors are not "thorough" or even "competent." That is, of course, not the case. It is just that Taylor has a specific set of needs and treatments that stem from her disease and she is not the typical ED patient for whom the doctors must reach a diagnosis and treatment plan. Although it is no fun to spend the night in the Emergency Room for anyone, they have always provided Taylor with first-rate care, even if we have sometimes suggested alternate treatments.
I certainly apologize to anyone at CHLA (I've heard no objections, but would certainly understand if some were made) if my last blog entry unfairly characterized the hospital or Taylor's wonderful treatment.
I feel less charitable towards the McDonald's in the hospital, however. I NEEDED that Diet Coke the other night. Not having any soda available whatsoever was the straw that broke my back. While I could have obtained soda from a vending machine in the hospital, it would not have presented me the cold, icy elixir which I sought. I remain cranky with McDonald's.
Kris had hoped to provide her own blog entry backing off my comments in Monday's update. Alas, Taylor developed a fever late last night (11:15, do they ever happen earlier? apparently not) and she accompanied Taylor to the hospital. All of the beds on 4W are occupied so they spent the night in the Emergency Department (a truly awful experience, I can attest). Taylor will be assigned a bed today, although one had not yet materialized as of noon.
Thus, it will be another long weekend in the hospital. Her counts usually do not rebound until Tuesday. So, she'll probably be there until then. It's no fun for her to be cooped up in the hospital for such long stretches of time. No 6 year-old should be stuck with that. Still, this week marked the passage of 6 months since her initial diagnosis and clear progress has been made. As July comes to a close, we really only have 3 or so months of this left. I cannot wait for the treatments to end.
Update from Keith - July 21, 2008
Things have gone so well lately, the train was bound to derail. Last night it did.
Taylor was really great this weekend. She had a lot of energy for a chemo weekend until last night when she crashed a bit. We weren't particularly surprised, though, since she was only 48 hours post-chemo.
Just before we were going to go to bed, at about 11:15 Sunday night, Kris grew concerned about T because she could hear her panting in her sleep. This has been a sign of fever in the past. Sure enough, Taylor spiked a 39.2 (that's about 102.5 Fahrenheit).
So, we put the wheels in motion. Kris called the Hem/Onc fellow on call. The fellowships last a year and the new fellows started 7/1. I think it's possible that we know more about cancer than they do (that's probably a little unfair); certainly we know more about the hospital than they seem to. In any event, there was no basis for us insisting on getting a bed on 4W directly as Taylor was probably not neutrapenic since she had only had chemo 2 days before and it usually takes most of a week for her counts to plummet. Thus, it was back to the Emergency Department; possibly my least favorite place in a hospital where I have suffered through all of my life's worst moments. It's that bad.
The one thing that they do right in the Emergency Department is that they let the cancer kids through to the triage waiting room right away, instead of making them stay out with the rest of the sick kids (and possibly get more infected). As soon as we got there, they let us in to Triage.
I carried Taylor up from the car and it felt to me like she was burning up.
Once in Triage, we waited while the kids in front of us were checked. It was the usual non-emergent sicknesses for which parents seem to bring their kids to the Emergency Room. We waited through a kid with a small rash, and another with a light fever (neither of them were admitted to the Emergency Department; they were treated in Triage) before it was finally Taylor's turn. As always, they weigh her and check her vitals. Her heart was racing--166 (although that's below some of the numbers she put up in the dark days of February and March)--which often signifies infection for her. Her temperature was still high--38.8 this time. The triage nurse gave her some Tylenol for her fever and directed us to the Emergency Department itself.
We probably should have left then. The Tylenol was the last useful thing they did for Taylor.
Shortly after arriving in our spartan ED room, a doctor came in to take her history. This drives me crazy. Her history is in their computer, in their medical files, all over that hospital. I get that it might be a little more efficient for them to just ask each time instead of read it, but the vast majority of the questions seem ridiculously irrelevant. Every single time they ask about how Kris's pregnancy was with Taylor as if some remnant of that event 6 years ago is causing her current fever instead of the cancer they diagnosed 6 months ago. In the entire interview, the only relevant question they ever ask is whether she has any allergies to medication. Never mind that it is all over her file and that they require her to wear a red wrist band which says "Allergy" on it every time she gets there, they still need to ask us each time. Last night the triage nurse noted it first (at least he looked at the file), and then the doctor asked about it, too (meaning she neither read Taylor's computer file nor the paperwork the triage nurse generated some 10 minutes before).
After taking her medical history, the doctor explained that she wanted to do a CBC (no surprise) and a chest X-ray. This is a favorite diagnostic tool in the ED. This is not the first chest X-ray Taylor's been subjected to down there. This time, though, I didn't mind because Taylor has had a deep cough and I was a little worried that there was something in her lungs. After telling us the plan, the doctor was gone.
The next couple of hours went by slowly. The nurse accessed Taylor's port (she didn't throw up this time) and started her on some hydration. She also took the blood for the CBC. Taylor slept much of those two hours. Kris and I just sat there while our chance at sleep slowly ticked away.
Finally, around 3, the doctor (I'll call her Dr. Genius) came back in. And while I'll never know for sure if Dr. Genius mastered the intricate (but irrelevant) facts of Taylor's birth (37 weeks, C-section, breach, Kris had gestational diabetes), I can say with a high degree of confidence that the entire medical history was wasted on her. Why can I say that? Because after two hours of presumably intense study and deliberation to arrive at Taylor's treatment plan, Dr. Genius recommended . . . (wait for it) . . . yes, you guessed it, she recommended treatment with an antibiotic from the same family of drugs that T is allergic to. Two hours it took for this brilliant analysis. I'm starting to think high school shop class is more technically difficult and intellectually rigorous than med school. At least putting in the wrong kind of gas won't kill you.
We thanked the doctor for her bold plan but pointed out the one tiny flaw. The doctor thought about it some more and then decided that she should probably give Taylor an antibiotic she is not allergic to. Discretion, as they say, is the better part of valor.
The chest X-ray still had yet to be completed. Thus, I took Taylor over to radiology a little after 3. You'd think it would have been empty at that time of night. But with X-ray being the ED's favorite diagnostic tool, there were 3 kids in front of us. Thus, we sat down in the waiting room and watched the food network, the channel the TV was broadcasting (this was actually appreciated; while the hospital can do many wondrous, technologically advanced things, they have yet to solve the mystery of how to bring cable to the TV's in the Emergency Department; thus, the beautiful flat screen LCD displays hang on the walls of the ED rooms, largely unused, although you can put a DVD in them). Taylor finally got her chest X-Ray after 15 minutes or so and we went back to the ED.
The nurse assured us that all she needed was for the pharmacy to send up Taylor's antibiotic and she would start her up. Unfortunately, it was a drip, not a push, so we knew in advance it would take 30 minutes or so for her to get the full course of the medicine. I decided to head over to the 24 hour McDonald's in the hospital to get a Diet Coke. At this stage in the night I was a Zombie and icy, bubbly goodness seemed exactly what I needed.
I got to the McDonald's and ordered a large Diet Coke. My mouth watered at the promotional pictures of icy cokes sweating through soda glasses (as if McDonald's served Coke in a glass). I was so caught up in my Diet Coke fantasy that I didn't hear what the cashier said at first: "We don't have Diet Coke." OK, how about a Coke? "No, the soda machine isn't working." Sprite? "No." What about Hi-C? "No." Water, OJ, and coffee was all they had.
Are you f'ing kidding me, I'm thinking. How could they not have a Coke? McDonald's without Coke is like McDonald's without French Fries. It can't happen. Worse, the posters of the icy, sweaty, glassed cokes taunted me. How could they do this to me? Only at CHLA is this possible. Even the McDonald's is part of the eleventh circle of hell which encompasses the rest of the place. I left empty handed and broken hearted. At least Taylor will have started her antibiotic by now, I thought. Maybe we'll get home before 5.
No such luck. When I arrived back at the ED, Taylor still had not started the antibiotic. Maybe the pharmacy was backed up or something, I don't know. Hell, they were probably out looking for Cokes.
Finally, after another 30 minutes, Taylor started her antibiotic at about 4:05. It was 30 long minutes going in. We left the hospital about 4:40. Turns out parking is the same charge from midnight to 4:45 AM as it would be in the middle of the afternoon when people actually want to park there. I parted with $4 dollars and we went home.
At least Taylor slept most of the time at the ED. Kris and I finally hit the sheets about 5:30. Both hours of sleep were wonderful.
Update from Keith: July 20th, 2008
A lot has taken place since my last blog update. I apologize in advance if this is an especially long entry.
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!
Where: La Grande Orange Restaurant
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
