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/Retraction :) from Keith: July 25, 2008
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
Update from Keith: July 4th, 2008
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.
