Wheel O' Worry

September 30, 2008

Did you see the new offer on late night network television? Ronco's fabulous Wheel O' Worry. Tired of your worries falling into a clutter in your mind? Never know which worry to concentrate on at any particular time? Feel like your worrying is a mess? Ronco's Wheel O' Worry solves all of those problems. The spokesperson I saw highly recommends it for the parents of pediatric cancer patients.

I bought one: $19.95 (or some multidigit multiple of $19.95, I don't actually have the bill yet).

I can testify that this handy device allows you to sort your worries and consider them one after another so you are never at a loss for what to worry about next. At first, having the Wheel O' Worry let me concentrate all my worrying after Erin's last scans on figuring out what treatment option would work AND that we could live with. As the Wheel O' Worry rolled forward, it enabled me to stop worrying about treatment options and concentrate on whether Erin's tumor burden would increase much waiting for treatment to start.

Treatment started and her pain dissipated, leaving my now orderly worrying process to move to the possibility of complications from having low platelets and the ensuing transfusion. As soon as that resolved, I could worry about the ramifications of serious infection from a compromised immune system. Her immune system rebounded, just in time to focus on low hemoglobin and a packed red blood cell transfusion. That fell away, as the Wheel O' Worry rolled on, bringing back a renewed interest in Erin's platelet count. The platelets recovered and fell away as a matter of concern, but the Wheel O' Worry rolls on allowing me the luxury of considering whether the one week delay will give the tumor too much opportunity to grow unchecked.

Before I got my handy Wheel O' Worry, I never knew what to worry about. Now I am never without the "right" worry.

Get one now! Don't wait!

[Disclaimer: this product does not handle the worry of fever and unwanted hospitalization particularly well. Fever concerns do not seem to fall into place along the edge of the wheel, coming into prominence occasionally and then receding. Maybe they will work out the bugs on later models.]

I can't say that Erin has slowed down to accommodate the new version of her disease. She stirred up an impromptu get together with Noah and Jackson (and assorted others: Hannah, Heather, Garrett, and Thomas) at Dairy Queen after school Friday, just because we hadn't yet done that since school started back. Once we got home, we had about forty-five minutes to grab supper and a quick dressing change on her PICC line (actually there is no such thing as a quick dressing change where Erin is concerned, but I was as quick as she would let me be) before I drove her to The Theater Company's production of "Cinderella." She and Katie had the privilege of sitting with board member, Leslie Borski during the production. Ask me how special a teacher you would have to be to have your former kindergarten students want to hang out with you once they became middle schoolers?

Conveniently for me and Walter (who wanted to enjoy adult beverages without the risk of driving to fetch her home), Erin spent the night with Katie. When we fetched her home on Saturday morning, she found her Aunt Kat and cousin Emma awaiting her. Emma is always up for play (Groovy Girls and Polly Pocket), and Erin is now having the roll reversal of being the BIG cousin instead of the LITTLE cousin. We also went out and supported Erin's soccer team in an 8-1 win. Unfortunately, Erin was not soccer-eligible this weekend because of low platelets. She handled the benching with grace, but I could tell that she wanted her turn on the field.

On the way home, she asked if I would shave her head when we got home. In essence, her rate of hair loss had really dropped off, leaving a very bizarre hair pattern in what remained. Picture your favorite male-pattern bald guy. . .you know, their hair grows at their side burns, above their ears, and in a little semi-circle around the back. Erin hair was the negative of that. . .kind of a reverse tonsure, with hair growing on her crown, but nowhere else.


Anyway, she thought it made her look like "one of those three stupid guys" (a range of stupid guys crossed my mind before I decided she meant the stooge with the creepy bowl hair cut). So we went out of the back porch and shaved her slick.

Saturday night we continued celebration of my birthday with Kat and Emma, and also our dear friend Olga, Keith, and Michael. Erin whipped up her famous guacamole and also made festive frozen yogurt dessert with dark chocolate chunks, marshmellows, cocoanut, and cookie pieces. Because Erin missed the arrival of Emma on Friday night we let her skive off Sunday school and church the next morning. They documented their play with photos (and no, just like a certain politician new to the national stage, you did NOT BLINK and miss the whole month of October. I think they were just searching for a costume for Emma to wear when the real day comes around).



Erin headed to school on Monday with a little trepidation about the new look. Fortunately, the day coincided with the arrival of the new laptops each student in the INQUIRE Academy gets for their own personal use, AT SCHOOL and AT HOME. Erin was incredibly excited about her new I-Mac or Macbook or whatever you call it. By the end of the day, she was totally not self conscious about her lack of hair, having made numerous slide shows and experimental photos with the built in camera and the Photobooth software. She found very artistic ways to stretch and twist images of her bald head on the screen. I'll try to get her to send some to me to share. This is the image she uploaded as her desktop:


You may have noted up above that I had dismissed the platelet worries and moved on to something else. Erin had labs after school yesterday.

HGB 8.8 (trending slowly down. . .should I add this back into the Wheel O' Worry repertoire?)
WBC 7400 (normal)
ANC 4800 (normal)
PLT 126,000 (soccer and P.E. eligible, hurray!)

With these numbers, it looks like the five-day chemo party scheduled for Thursday through Monday is on! Please let me know if you would like to skip work or school to share the fun. I think we will spend Thursday night and Saturday night in Houston and Friday night and Sunday night in Bryan.

A Full Deck?

September 26, 2008

Forget the package tour that includes seven European countries in ten days. Consider Erin's travel special: 44 rounds of chemo in 42 months. What a deal! When you add the 44 cycles since relapse to the seven she had at original diagnosis (leaving out the biologicals, radiation, and vaccines), you have a total of 51 (which happens to be the chemical number of one of my favorite chemicals, Antimony, Sb, and the number of the fire engine on the 70's series "Emergency"). AND IF her platelets get back to a reasonable level by next Thursday, we will have the pleasure of completing the deck with Round 52.

Yesterday we waited around clinic a pretty goodly amount of time, as we say in the South. Luckily, we had some of the Sahm girls to keep us company and provide those little electronic hand held toys (I'm having a brain block about what they are called) for entertainment. I understood part of the hold up was a lean Sigma Six meeting about reducing bottlenecks in the clinic. I have a hint: don't schedule staff meetings with essential staff when you have patients in the lobby waiting for labs and office visits.

Erin looked fine and had gained a pound or two.

HGB 9.2 (low, but fine for Erin)
WBC 5500 (normal)
ANC 3500 (normal)
PLT 27,000 (You still can't hit her, trip her, or stick a knife in her)

To participate in the planned festivities at the end of next week (don't you get a party or something when you play with a full deck?), Erin's platelets will have to climb up to 75,000. That means your job is to think sticky thoughts (platelets "stick" the liquid part of our blood together when we have a cut so that it doesn't all leak out) over the weekend. We'd really start getting uncomfortable to delay the next round, so higher platelets are essential.

This round (starring topotecan and cyclophosphomide) will essentially replay an earlier verse of treatment. We hope that this iteration is equally effective and relatively easy on Erin.

Here's the plan: Erin will have blood counts done on Monday and Wednesday afternoons next week. If Wednesday's numbers look promising, we will drive to Houston early on Thursday and do the office visit/out-patient chemo thing (look for my whining entry that evening on what a long day it was). Erin and I will spend the night in Houston (NOT IN THE HOSPITAL) and probably catch a flick and eat yummies. Friday we will report back to clinic for chemo, then drive back to Bryan, hopefully before rush hour. Erin will have chemo again in Houston on Saturday and Sunday--in-patient, since the clinic closes on the weekend. We may have "in and out" privileges. If the nurse thinks there will be space available on Sunday, we won't have to stay the night. If things get really crowded, we may just have to bunk in, so that we make sure we don't get passed over for a bed for Sunday. Monday will be the final day of the round. Walter will hang with Erin, since it's a teaching day for me. If all goes well they'll be home in the afternoon and ready for a normal remainder of the week.

Ramblings

September 22, 2008

So, I heard you wondered if Teddy remains, ahem, not so cute. Perhaps you remember her inaugural photo?

What do you think? Some claim she has improved:

Well, at least she's still loving, quiet, and a willing buddy for Willie.

Do you remember that we had a long day last Thursday and didn't return from our transfusion trip to Houston until almost 1:30 in the morning? I slept in until 8:00, but looked forward to a fuller night sleep on Friday to catch up the sleep debt. Some time in the darkest of the night, Luke started barking. He delivers one slow, loud woof, and then has to stop a few beats and rest (remember he's a yellow lab going on sixteen years old). Woof, rest, rest, Woof, rest, Woof, rest, pause, rest Woof. I heard Erin croaking at him to "Pleeease beee quiiiiieeeet! . . to no avail. Walter also spoke sharply at him, which usually works. But not Friday night. I knew he had walked and done his doggie business only about 45 minutes before, so that his plea wasn't for someone to let him out. Finally, I did what only a doggie mother would do. I picked up my pillow and creaked my way downstairs to sleep with him so he wouldn't be scared and disoriented. We all rested easier after that, though perhaps on Saturday, we all moved more sluggishly and groggily than we would have without the night time disruption. Luke was the only one among us who could afford to catch up on his sleep the next day.


Uh oh. I think I got side tracked. This is Erin's home page. You probably want to know about her. On Saturday she resumed her project of unsorting the legoes. I think she is trying to re-create the rebel base on the ice planet Hoth.

Did I mention the pear crop had come in? If only it had arrived before Erin got constipated. We would have had a ready solution (note 1: there are twice as many left on the tree, even after Ike's visit; note 2: we judge the quality of our friendships by how many pears our friends are willing to take off our hands. Do you have yours yet?).

Last night Erin had requested that Walter fetch her from bed when I got home from my soccer match, so she could take credit for what awaited me on the table:


You can't actually tell from this version of the photo (click on the photo to see the actual details), but she hand painted the vase and gathered this bouquet from plants growing in our yard and Moo's yard next door.

Today's blood counts (have you read this far?):

HGB 10.1 (low, but a hell of a lot better than 6.2)
WBC 7000 (normal)
ANC 4700 (normal)
PLT 20,000 (ouch! don't hit her, trip her, or stick a knife in her)

Even though the platelets are officially transfusable. We're gonna let 'em ride, and see if her body can take care of this on its own this week. No P.E. and Ack! No soccer until there's a bit more glue to stop any bleeding. We'll delay the next round of chemo (even though it's "only" topo/cyclo) for a week (now tentatively scheduled to begin October 2) with a plan of three (week) days of outpatient chemo and two (weekend) days of in-patient chemo to minimize school absences.

She's Cooking Now

September 21, 2008

Erin had a good day on Friday. Only two tylenol all day, and the second one was preemptory. Even better, she ate some beef stew for dinner. Saturday morning she woke up ginning, cooked muffins for breakfast while I walked the dogs, and ate a pear off our tree as a side dish. With those two meals she has surpassed her volume intake for last week, I think. Since then she hasn't looked back on the eating front, and her energy has picked up a bit as well. My non-medical opinion is that Erin's white count and ANC must be on the rise, enabling the healing process in her mouth and throat to begin.

An internet friend of mine, Caryn Franca, made a point on Nick's blog a couple of weeks ago that really resonated with me. She wrote: "Parents constantly struggle to hold their two worlds [cancer and normal] together for 'their kids' sake." This week I have felt a lot like Stretch Armstrong as I attempted to carry out that mission.

On the one hand, Erin felt pretty miserable because we had just poisoned her for seven days straight. I spent most of each day last week caring for and comforting her, preparing her mentally for middle school hair loss, and doing PICC line care and the symptom watch. We had two hospital days for transfusions and a lot of medical phone calls, either reporting her condition or making arrangements. Simultaneously, I remained upbeat and positive in every interaction with Erin. I helped her with science worksheets and encouraged her to practice the piano, even if it was for only five minutes. I dutifully steered clear of her bedroom when she shooed me away to work on my birthday gift. Every day I strained to notice "something" that would indicate that she was on the mend. Mainly, I work to carry the burden of Erin's disease so she doesn't have such a heavy load.

Today I'm much less stretched than last week. Erin (completely med free all day) is out spreading dried wildflower seeds in the common areas of our land with her grandmother. I, on the other hand, am trying to catch up overdue grading. I don't think she feels as peppy today as she did yesterday, but I think she is mourning the loss of each little short, red hair that gives up the ghost, lets go of her scalp, and flutters down to land on her shoulder. Luckily, the fine folks at Mary Branch delivered the new Fall Erin Fantasy Collection of millinery items yesterday, so that Erin will be well-hatted wherever she goes. Thanks to you all! You got her style just right.

Tomorrow, back to school, at least for first period. Walter will pick her up around 9:20 for blood counts. The plans for the rest of the day depend on what's going on inside her body.

I Can See Her Lips

September 19, 2008

Well, I wasn't wrong about yesterday turning in to a lonnnng day. We made it back from Houston at 1:23 this morning, fourteen and a half hours after starting out (FYI, Erin's transfusion orders said to run the unit and a half of red blood cells over four hours. I don't know if they also ordered six and a half hours of sitting around time or if that was a bonus for our good behavior). Two important outcomes: 1. we made it through the transfusion without running a fever despite Erin having an ANC of 56 (no, I haven't left off any zeroes. . .we need that number to rise above 500 for Erin to make it back to school on Monday). A fever would have landed us in-patient for three days; and 2. I can now see Erin's lips as a distinct facial feature and not just more pale white skin attached to the pale white skin covering the rest of her face (before last night the only way I could distinguish her lip was that they had no freckles).

Our day felt much shorter than it was because Elaine and Nico helped us bear the weight of the day. I can't believe we have the blessing of friends who would volunteer to drive two plus hours into a hurricane-damaged city, sit for hours on end in uncomfortable chairs, waiting and waiting, then turn back around to make the drive home. Because they came with us, Erin and I not only survived the day but thrived. I had warned Nico before he loaded in the car that Erin felt pretty miserable and with a hemoglobin of 6.2 (below 8 triggers a transfusion, and 11.5 is the low end cut off for normal. . .where most of us would feel a bit limp), he might want to pack his I-pod or a handheld game, since she may not have much play in her. Yet, companions seemed exactly what Erin needed. She and Nico laughed their way their several more episodes of Hogan's Heroes. We played Crazy Eights, Casino, Upwords, Kadoodle, and count dominoes. We made the hours pass. At the end of the evening, at 11:05, the nurse unhooked Erin from the pole, and said, "Some parents like to stick around for a while if their children registered temperatures between 99.5 and 100.0, like Erin did, just to see if they have a fever coming on." We politely said, "No thanks," and headed towards the door. I fetched the van, we loaded, and drove away by 11:23, thirty-seven minutes before the City of Houston curfew kicked in, and driving on the streets of Houston would have become slightly illegal. I think we passed over the city limits at 11:55. A fever never materialized.

Dr. Heidi Russell didn't have too much to say about Erin. She is concerned that the mucositis and sores (that possibly extend from top to bottom along the route that food usually travels) could provide an easy target for bacterial infection. She pre-empted my inevitable plea for leniency and a Bryan hospital venue in case of a fever and hospitalization, by telling me to get back to Texas Children's without dawdling if Erin meets any of the admission requirements. This puts the burden on all of you to re-double your efforts and petitions to higher authority to keep Erin fever free until her ANC recovers. We hope that it roars back over the weekend, clearing the deck for a start to a normal week on Monday.

We May Be Ready, But We're Still Waiting

September 18, 2008

Counts were quite low again this morning. Erin and I are headed to Houston for a red blood transfusion. It promises to be a lonnnng day.

We're Ready

September 17, 2008

The Buengers are completely ready for Erin to put this last round of chemo behind us and to move on. Perhaps today will be the day. Yesterday, Erin felt a tad bit better than the day before and had longer stretches of activity. We even ran some errands, including dropping in at the newly opened Chet Store (Chet Edwards campaign office) and stopping by the church to say hello. Getting out of the house really help keep us both from going stir crazy. She also worked pretty diligently at her school work. The whole concept of missing school is a sore subject to Erin, and I might let her drop in today for a while. Most of the side effects from the chemo seem to be resolving (much more slowly than we prefer), except two: fatigue and mouth/throat irritation. Her doctor says the sore throat could last a while longer. This isn't great news, since it keeps her from swallowing easily and produces yucky, thick spit. Definitely a damper on eating. I think the tiredness will go away when she can eat better and rest better and when all her blood counts percolate back up.

Overall the title of the post says it all.

Down the Rabbit Hole

September 15, 2008

Erin received all the virtual patient greeting you would have sent today IF St. Joseph's Hospital had patient greetings and IF you had known that Erin would have to check in (temporarily) to have a platelet transfusion. Thanks!

We are home now.

I have to say, the whole sequence of events surprised me. Yesterday, we stuck close to home (no church) because I felt like Erin's white counts were headed down, and I didn't want to chance a hug with someone who was coming down with something. She was tireder than she was on Saturday, so I thought her hemoglobin might be on the wane as well. I had seen no sign that she was at risk for bleeding and assumed the platelets trough would follow some time after the other two had started to recover.

That's why they pay me to teach management not medicine. When Walter took Erin in to the pediatrician to get counts done this morning, Erin was at the bottom of the barrel of ANC. Her hemoglobin was virtually the same as it was when we left the hospital last Wednesday, and her platelets (usually the most robust of all of her blood numbers and solidly normal last time we checked them) had dropped to 10,000 (normal is 150,000 and above). Hence the transfusion. Of course, those sorts of things only go smoothly and quickly on television shows that have 44 minutes to resolve all the plot lines. This afternoon felt a whole lot more like Alice trying to figure out how to get back out of the rabbit hole she fell down, but as I said before,

We are home now.

I suspect (does this actually translate as "I blindly hope" in whatever language you speak?) we have seen the worst of this round of chemo. Since we are finishing up day 12, I suspect her ANC will head up quickly (stimulated by the neulasta shot she had last Thursday). Hemoglobin seems to have stabilized already, and the platelets ought to appreciate today's boost. We'll probably stick pretty close to home tomorrow, and make decisions after that based on what she feels like doing (maybe I'll say no to kick boxing, but I'll definitely consider other activities).

I Apologize

September 13, 2008

I apologize to the twenty percent of all Texans (including 97% of the residents of Harris County and practically everybody in in Galveston County) who have no power right now.

I apologize for disrupting the lives of the thousands of folks who evacuated their homes in front of Ike and the many more who didn't.

I apologize to the parents of children in Bryan and College Station who had no school on Friday.

I also apologize to all the sixth, seventh, and eighth graders attending public school in Texas.

Erin got home from Houston on Wednesday afternoon, and we knew that we would burrow deeper into the real world of pediatric cancer in a mere few days. Although Erin has had continuous treatment for relapsed neuroblastoma since March of 2005, she has not really walked "the walk." In-patient last week was a start, but we knew we would soon face other obstacles common in the life of so many other families battling cancer: transfusions, susceptibility to infections, and the dreaded "fever watch" (where parents fear taking their children's temperature because any significant fever buys a three day hospital stay). We've had a free pass on those jewels for years.

So, on Thursday, all Erin really wanted was a quick return to her normal life: school, friends, soccer.

I let her go back because I knew her counts were still relatively safe, but I didn't look forward to subsequent days. I wished there was a way to navigate the next week without winding up in-patient again and without having to exert the heavy hand and keep Erin home from the things that she loves. Who knew the power of wishing?

All of a sudden, the announcements started rolling in:

Soccer canceled Thursday night (weather beautiful, but the city had its attention focused on the storm).

School canceled Friday and possibly Monday, because officials needed local gyms to house evacuees.

Erin will not have to change classes Tuesday, Wednesday, Thursday, OR Friday next week (thus, eliminating homework and additional schoolwork until after Erin has made up last week's missed work AND simultaneously reducing her exposure to germs by roughly 80%) because of statewide mandatory TAKS benchmark testing.

I didn't mean to idly exercise power over the universe for my own benefit. But I'll take it (with apologies to those affected).

*************

Ike brought wind and rain to the Brazos Valley. We told him Tina wasn't here so he moved along without causing too much trouble. Erin is a bit tired (probably low hemoglobin), but happy enough. Sam came over to play all day yesterday and took the third mike on the radio show last night. We have spent today unpacking and putting away all the hospital stuff and working a jigsaw puzzle. We cut Erin's hair on Wednesday night in preparation for an even shorter, or non-existent, "do" next week.

Advertising Story Board for Spa TCH

September 11, 2008

(voice over): "What would be the perfect moment in time for you? Would it start with a Swedish massage in the morning, followed by a custom body wrap, a European facial, French nails?"

(pan to vignette 1):


(voice over): "At Spa TCH, experience the novel, yet invigorating plasma treatment. . ."

(pan to vignette 2):


(voice over): "Relax as one of our experienced* attendants takes care of your every need. . ."

*For example, this attendant, Chet, has almost eighteen years experience at the nationally acclaimed House of R Spa.

(pan to vignette 3):

(voice over): "At Spa TCH your day might include aural therapy and the melodious sounds of our staff angels. . ."

(pan to vignette 4):


(voice over): "and opportunities to customize your suite. . ."

(slowly pan to vignettes 5, 6, 7, and 8):

(voice over): "Our friendly staff is here to serve..."

(pan to vignette 9):


(voice over): "Pamper yourself. . ."

(music soars, pan to last shot):

Break Out

September 10, 2008

I heard that our two great and good friends (Walter and Erin) have slipped their bonds and will have Houston in their rearview mirror within the hour. Think about us this evening, watching the sun go down over the lake, dogs in our laps and at our feet, enjoying ourselves and feeling proud that we have survived another unexpected and unpleasant thing thrown our way.

Home Soon: T Minus 19 Hours and Counting

September 9, 2008 (second post of the day)

I don't know whether I will have time to post in the morning or not. Tomorrow morning I have to leave Houston again before the sun comes up to make it back to the Microplex to teach.

We stumbled through today with some ups and downs. Ted (Foote), Carlos (Blanton), and Ernie (Wright) all stopped by for visits and helped us break up the day. Erin demonstrated the plasma car to Ted, chatted politely with Carlos, and won a big stack of candy from Ernie playing poker. Walter made sure we had the best items to eat at every meal, and the nurses kept on schedule. We also continued to get patient greetings at a prodigious rate, and chuckled and gaffawed our way through junior high and pet stories. Then there was mouth care.

One of Erin's 48-hour chemos is notorious for causing mouth soars, so she's supposed to swish and spit mouth rinse. She immediately rejected the hem-onc rinse, because it "tastes too much like the ocean." Walter ran to the pharmacy and came back with two other options: one minty, the other fruity. Then the drama started up. Tears, flat refusals, pleading for a reprieve. Erin didn't want to practice mouth hygiene for all the bribes I could muster. We stood in the bathroom, like the northbound zax meeting the southbound zax somewhere in the middle of the Prairie of Prax, each refusing to yield.

I described the pain of mouth sores, and the consequences of them getting infected by a dirty mouth. No dice.

I drew targets on the bathroom mirror with markers (some even had dollar values assigned instead of points), and told her she could practice her spitting for fun and profit. No dice.

I offered to gargle twice the amount she had to gargle for twice as long.

Finally, I wore her down (once). I haven't started working on this evening's strategy yet.

The week-long hospital stay has worn out its welcome. Erin can hardly wait to get back to Luke, Uma, Willie, the Molten Lump (aka Teddy, so called because she likes to sit on or near her people and radiate heat until everyone's aglow). We all have frayed ends and have begun exhibiting some snippy behavior. We will take a collective deep breath (our only option in the absence of recreational drugs) and make it through the next nineteen hours. Then we will all heave a sigh of relief and return to the lovefest which is our norm.

One More Sleep: T Minus Two

September 9, 2008

The visitor traffic fell considerably yesterday, since our friends had to go back to work and school. Luckily (for us) Pam Engler had a meeting down the street and dropped in with some goodies for a visit. And Whitney Wilkerson who will soon leave for Ireland stopped in to share photos from Mo Ranch. Thanks to both of you. Erin and Walter also dropped by at clinic to visit Hansy and Lara. Hans scanned the same day that Erin did and got similar unwanted and unexpected news and is having outpatient chemo every afternoon this week.

There is something wrong with the picture when two kiddos who would much rather spend the day at school get tied to bags of nasty chemo instead. What can I say about this that doesn't sound stale and cliche? We all need more options, and we are not going to get them just by wishing for them. That's why we work so hard trying to raise awareness and lobbying for research money through both public and private sources. And it's why we have to work harder.

We'll start this Friday appearance on Doug Vance's Family Affair radio show (local radio 89.1, KEOS). The TCH NB families are giving a bake sale here on the bridge at the hospital on Friday, unless Ike spoils the party. Proceeds will go to research programs here at the hospital. We also have friends planning a Lunch for Life event for us in Bryan.

Erin had labs drawn while I was gone yesterday. Happy to report that everything is holding steady for now. The main effect of this chemo regimen lowers blood counts, so we can probably expect t-r-a-n-s-f-u-s-i-o-n-s in Erin's future next week. Her immune system will also take a big hit, so we will need to add vigilant hand washing back into the menu.

Still Unremarkable: T Minus Three

September 8, 2008

Despite the fact that the hospital still feels like Hotel California to me (you know. . .you can check out any time you'd like, but you can never leave), we have made it to the last day of topotecan. An hour after she finishes that infusion (probably around 4:00 this afternoon), the nurse will hang a big bag of doxorubicin and vincristin that will run continuously for forty-right hours. Then we can come home. Do the math. This likely corresponds to Houston Rush Hour on Wednesday.

We again leaned on friends to make the best of an unfortunate situation yesterday. We had a visit from church friends Kristen and Lisa Akin, Grace Kim, and Toni Sahm (for the second straight day! hurray), who selflessly skipped church (they came after Sunday school), to maximize the amount of time they could spend with Erin. Thanks ladies. Lisa, even took photos and had them waiting for me in my email box this morning. This is going to have to suffice for you Erin fans looking for pics. I have actually taken some at the hospital (don't drop your jaw), but I don't have the mechanism to get them out of my camera and on to the information superhighway when I'm working from TCH. Look for a photojournal of our stay by the weekend maybe.



Olga, Keith, and Michael came in the late afternoon to spell Walter and I for a couple of hours and give us a chance to dine out and just get away from the hum of the hospital. They can't imagine how their kindness re-energized us for the final three days.

Walter is taking the day shift today. I left the hospital about 6:30 and (fortunately) drove against traffic to make it to CS to teach this morning. I hope that Erin continues to tolerate the meds and that unremarkable remains the word of the day. I think we are in for some transfusions and other unwanted side effects as the remnant of Hurricane TVD moves through her system, so for now I prefer no surprises.

Don't forget to send your best pet stories (see below).

Hump Day

September 7, 2008 (second post of the day)

We have almost made it over the hump of this hospital stay. I guess the web version of our stay is a little more glamorous and exciting the the real time version, but we're getting by. As usual I will tell you about our day today during tomorrow morning's post, but Erin asked me to log on and give you a new topic for any patient greetings you might be thinking of. Of course, we would love to keep hearing about your golden days in junior high or middle school, but you can also tell us about your wild and crazy pets if you would prefer. While I am confident no one has a pet that can out do Willie for wackiness (or at least destructiveness), we'd like to hear about the unusual things you live with.

You can follow the instructions for sending a greeting at http://www.texaschildrens.org/parents/patientgreeting/default.aspx

A Wealth of Friends: T Minus Four

September 7, 2008

Oops. I'm a little late posting this morning, but I slept in until 6:20, and by the time I dressed, made coffee, checked e-mail, and did my daily visit to other NB warriors around the I'net, this was the best I could do.

Erin and I spent a good part of the morning readying the room for visitors yesterday. Erin made signs for the door that said "The Party's Here" and "In Crowd" in really groovy letters. We made sure we invited the attending, fellow, resident, and the nurse manager (and of course, our room nurse had a standing invitation) to the party so they wouldn't feel compelled to shut us down once the the party started. I spent the better part of the morning trying to get Rhapsody to work on Walter's new laptop, but apparently I was a technological cripple yesterday because we had to settle for playing CDs.

The occasion for a party: Erin's great friends Nico, Jesse, Jackson, and Toni and their equally great parents had chosen a TCH visit over whatever else kids might pick for their Saturday activity. We started the party around noon with Erin unhitched from her "escort" for lunch in the deserted food court area over in the clinic building (closed on the weekends, so we had the space and airy view all to ourselves), and for the next several hours we moved the party from place to place around the hospital. Why a progressive party, you might ask? With twelve less-than-quiet, less-than-still folks, we didn't fit in Erin's room all that well and we tended to wear out our welcome fairly rapidly.

Most of you familiar with relapsed NB probably don't realize that although Erin has been relapsed for almost three and a half years, we have somehow escaped significant in-patient time at Texas Children's (we did come in once or twice, checking in and out on the same day for chemo). Since she was in remission for two years before relapsing, it means that we have not had a hospital stay even remotely similar to this one in a really long time. Let me tell you, it is significantly different to have an eleven year old in the hospital than a five year old. For instance, at one point yesterday, having already played games in the play room, eaten pumpkin pie in the Ronald McDonald hospitality room, and explored the library on the 16th floor (accompanied by dads Joel and David), the kids were looking for something a little more adventurous. I did something I fully well expected to regret later. I said, "Why don't you just take whatever games you want to play, go over to the Clinic Building, and find a place to play over there." I didn't have to ask twice. Boom, they gathered up, and taking turns pushing Erin's IV pole, they were out the door, down the elevator and gone. I braced for a subsequent visit from security for aloowing patients to run loose and parentless all around the campus, but apparently whatever mischief they found was private, and I will not have to fill out paperwork for Child Protective Services.

They did get called down by the nurses when they got back to the floor for their equivalent of pod racing. Erin brought her plasma car to the hospital. It may not look like much, but it is billed by the manufacturer as vivid, sleek, and aerodynamic (and as a personal observation smooth tiles are its natural terrain). In timed races in the 200 yard circuit that makes up the ninth floor, Nico posted the record time of 56 seconds. Given the number of toddlers, preschoolers, and IV poles strolling the halls, it was probably okay that the nurses intervened and put a stop to the plasma car time trials.

The party broke up around 7:00, shortly after Erin finished her chemo drip and flush. We spent a little while exploring all the new entertainment stuff hauled in by the various families (Not only did they bring really great stuff on their own accord, but they came laden with numerous and varied items sent by various other friends like the Guerrieris, Villalobos, and Kamphafner/Schwalens!) . I think we have enough games, movies, and books for a transplant-length stay, but we will do our best to use them all in the next four days.

Lest you are feeling sad having missed the glam party of the season, let me reveal that some of you were there in spirit, if not in person. One of the highlights of the afternoon was when the twelve of us sat in a circle in Erin's room (no, we didn't clasp hands and sing Kum Ba Ya), and took turns reading the funniest and most heartfelt greetings you have sent. We were alternately roaring with laughter and wiping our eyes because of the beauty of your words. The children invariably picked the one's that involved topics most interesting to them: vomit, bathroom accidents, and mischief. I just kept thinking how I was glad no one has figured out how to tax friendship, because we'd be in the upper tax bracket thanks to our wealth of friends

Fun Friday: T Minus 5

September 6, 2008

It's so hard to choose: salt glow or cucumber-slice facial; hot stone massage or reflexology. I think we will need to consult our esthetician. We definitely put the hydrating salon on our agenda, but will wait for more advice before we schedule any of the other luxuries.

I can report that yesterday turned out much better than I expected. Erin slothed around most of the morning: due to side effects--not from chemo, but from sleep deprivation. The doc warned us that she might get pukey from topotecan (offered in the grande size, not venti. . .for you Starbucks fans. For regular topo users, she's getting about twice as much topo each day as she did on the topo/cyclo regimen.), but so far zofran, the gold standard of anti-puke, is doing its job. Around 11:30, the nurse unhooked her for a shower and we got to start our two hour "liberty" away from the "escort" the spa so thoughtfully provides (NOTE BENE: TCH escort is stenciled on the base of Erin's IV pole.). That coincided with the arrival of Moo (Erin's awesome grandmother) and Joanne (grandmother's awesome friend) bearing many fine greetings from Erin's new teachers and friends at Jane Long Middle School, plus a hefty amount of schoolwork. We decided to think about the schoolwork later and told out nurse we were going downstairs for lunch. Technically, that's exactly what we did. You would be amazed at how far away from Texas Children's you can get when you access the service tunnels. They go everywhere, and you aren't lying when you report that you never left the building.

Moo and Joanne didn't stay too long, maybe three hours. Theirs was primarily a delivery mission (because you can never have too much stuff in a hospital room), plus they needed to beat the Houston traffic to get back to the First Friday Social Hour with the other "Nasty Maturalists" (You'll have to go to the spring 2007 archive link and scroll down to the May 12th Mother's Day entry for an explanation.).Their arrival really perked Erin up and after that, the fun never stopped. We cranked Rhapsody up on the laptop and got down to some serious room decorating. We also entertained various spa personnel (the origamy-ist made an extended visit and showed Erin how to fold a puff frog; Dr. Russell stopped in again, just because she likes us and we keep a stash of dark chocolate; we scored a two-for on nurse practitioners. . .maybe news of that chocolate stash thing is spreading; oh and we had four separate deliveries of Patient Greetings!).

Let me tell you how hard we have laughed and how uplifted we have felt with your patient greetings. I am trying to figure out a way to share some of your middle school misadventures (you can't imagine how many of them involved Erin fans accidentally mooning crowds of popular kids; have you been watching too much Disney tv?). We received over a hundred cards yesterday and each delivery ratcheted Erin's mood up even higher. Thank you! Thank you! Thank you! You can keep sending them over the weekend and when the volunteers show back up on Monday they will get a duffel bags and haul them up to our room (try to envision the courtroom scene from Yes, Virginia, There Is a Santa Claus).

As evening approached, Erin got antsy waiting for the arrival of our evening guest, Congressman Chet Edwards. Those two are peas in a pod. When he arrived, Erin took him to the model train exhibit then back to the room to play cards and swap stories for a couple of hours, giving me a chance to slip away to find real (non-hospital) food for the three of us. Erin took the opportunity to do some lobbying for the appropriations commitment for the Conquer Childhood Cancer Act, and they made plans to get Erin together with Appropriation Committee chair David Obey to make a personal appeal to get it on the docket.

When we finally hit the hay, Erin was a very happy girl!

Countdown to Escape: T Minus 6

September 5, 2008

If you judge the quality of a spa by its relaxed pace and unhurried staff, never rushing you to the next part of your day, then surely Spa TCH will add stars to its Michelin rating. Somehow Erin's enjoyed the day unencumbered by an IV pole until guest services finally hooked her up and started pre-meds at 10:00 last night. Imagine twelve hours in our suite with nothing on our agenda. We did slip away as the Houston rush hour traffic started gathering nine floor below us for a jelly massage and ultrasound of Erin's chest (known on the menu of available relaxation options as the "Pampered Girl's Echocardiogram"). We also saw four episodes of Hogan's Heroes (you haven't experienced the drum cadences at the beginning of HH, if you haven't sat in lounge-chair tiered seating with surround sound eminating from the nurse's call pad!). You wouldn't believe the bill for these luxury accommodations, but believe me its worth every penny (and perhaps some of the nickels and dimes).

I did learn something new about Erin yesterday morning: Erin + nebutol = RAGE. Part of her conscious sedation included nebutol which we had never used before. When I went in and found her recovering from the PICC line placement, her face had that contorted look, like Bilbo Baggins from The Lord of the Rings had when Gandalf (or was it Frodo?) tried to take the ring away from him, and she was not using her "indoor" voice. The nurse looked equally angry. Apparently, the nurse thought that Erin was a serial verbal (and perhaps physical) abuser who had been raised by wolves in a den with no manners. I had heard of children having this reaction, so I gently probed the nurse about what drugs she had, and asked whether what we were witnessing be a reaction to one of them. The nurse was absolutely confident it was NOT the sedation drugs, "because when children have that kind of reaction, they are incoherent and out of control. Erin might be out of control, but she is perfectly articulate and acting that way on purpose." I told the nurse that the reason that Erin could rage coherently was because she was very intelligent, and that I was positive she was having an adverse reaction to something. The nurse and I apparently agreed to disagree with that assessment and needless to say, they moved us out of recovery up on to the floor, as soon as they could. I hope this is the only time Erin ever needs a PICC line, because I think we burned our bridges there and won't be invited back.

In the hospital world, "unremarkable" is the best report a parent or nurse can give the attending physician about the previous shift. I can proudly say that our night was unremarkable, except in the number and obnoxiousness of the interruptions to our sleep. We had started a poop watch yesterday afternoon, on the presumption that most of Erin's discomfort, including her back pain, likely came from backed up plumbing. After some senna and colace, things started moving, at least a little, and Erin presented us all with a nice gift in the toilet this morning.

Thank you for the patient greetings. We actually got two deliveries yesterday (about twenty-five cards) and have started pepping up the room. If you didn't have time to send one yesterday (or you are bored at work) you can click here and follow the instructions for sending a greeting: http://www.texaschildrens.org/parents/patientgreeting/default.aspx. We are still working on the theme (besides your best wishes) of your favorite or least favorite memory/story from middle school or junior high.

Before we started getting cards, Erin worked on beautifying the room by drawing a lovely mountain scene on the wall-sized white board. Underneath it, she wrote "Being at home in your mind is almost as good as being at home."

Erin's Request

September 4, 2008

We have checked into the luxury suite at Texas Children's (they wanted us to take a whole floor, but we demurred and set up base in room 933) and have asked the concierge to schedule the seaweed wrap for both of us, which comes highly recommended by NB dad, Pat.

I guess it was worth it to walk Willie at 4:00 so that we could leave by 5:20 and get here by 7:50, just so we could watch Hogan's Heroes in the room, eat pizza, and not start chemo. Erin's nurse told me they were not that used to morning admits, so nothing was ready yet. We don't even have a bed in the room (which gives us a lot more room for our stuff).

I want to post this quickly and provide a fuller update later. Erin loves to see the comments you leave on the home page, but what she likes even more is receiving patient messages through the TCH system. They print these messages out on pretty cardstock and deliver them to the room. We use them to decorate by taping them up everywhere.

If you click here you can follow the instructions for sending a greeting: http://www.texaschildrens.org/parents/patientgreeting/default.aspx
This visit's theme (besides you best wishes) is to hear your favorite or least favorite memory/story from middle school or junior high.

Later. . .perhaps by then, we'll actually be attached to an IV pole.

TCH Spa

September 3, 2008

With apologies to all of you whom I've spoken and/or e-mailed with when I described the pemethexed trial with the expectations that that's what we were doing, I can now tell you all that we will be spending the next seven days in-patient at the Texas Children's Hospital Spa and Getaway. While Erin's CT scan last week indicated we need to change directions, her increased pain and falling appetite indicated that we needed a bigger change in protocol than waiting another week to become eligible for a single agent trial was going to give us. For those of you taking notes, we are going to try five days of topotecan follow by a 48-hour continuous infusion of adriamycin and vincristin (I had the link of the full-text article at my office today, but now I can't find it. I'll look for it later.).

At first we thought the (relatively) benign path offered by pemethexed with weekly clinic visits and an infusion once every three weeks, would fit conveniently into our schedule. Our optimistic selves thought that this route might help us maintain that very active and normal existence we crave and strive for. Erin, however, showed signs that her cancer might not be willing to cooperate with that plan. She did well at school yesterday (according to her teachers), but she required more tylenol at home. Last night she had a pain episode with back spasms and throbbing. I gave her a tylenol with codeine and a back rub. When she recovered, my dutiful child finished her Spanish homework and practiced the piano (this was close to 9:00), then went to bed.

I woke up, convinced that we couldn't wait a week, nor depend on a single-agent trial. A call to the onc, helped us think through our options, and can you believe, we chose the least convenient thing offered: a PICC line and seven consecutive days in-patient. Erin and I are going to treat this as a spa occasion. We're going to watch movies, make crafts (Lara, help! with the lanyard project), and call for the concierge if we need anything special. Erin prospered at school today and did her piano lesson with verve. When I explained she needed a PICC line, and she wouldn't be able to swim for the rest of the month, she asked if I would call Jackson and see if she could swim this evening. I did. She did. And she just got back home (9:00 p.m.). When I told her she would lose her hair again (third time), she said, "well, maybe I can get my hair cut like Mrs. Freeze (who has a very cute, short cut), you know, so people can see a 'V' at the back of my neck. Then they won't really notice that my hair is gone when I lose it in a couple of weeks."

We leave Bryan tomorrow morning at 5;30 to make it to Houston for a 7:30 check-in, PICC line placement, and immediate in-patient stay. We will be there until next Wednesday. We anticipate being bored and lonely, so if you live in the area or can plan a visit, feel free to keep the party going!

If there is wi-fi, I will be updating regularly (we haven't been inpatient in a loooonng time). If not, go read something else.

Coincidentally, September Is National Childhood Cancer Awareness Month

September 2, 2008

Thanks for checking on us. Many of you have stopped by regularly over the last few days, I suspect hoping to hear what we will do next. This post is a non-announcement.

Erin got back from her weekend away around 7:00 Sunday evening. I'm not sure what all they did because the full range of conversation about her previous fifty hours away focused on PUPPIES. In a replay of our phone conversation from Saturday night, she mainly just moved her mouth a mile a minute talking about the seven puppies. She even tried to trick me (by getting out of the truck with a bundled up blanket) into believing that she had brought one home to keep Luke, Uma, Willie, and Teddy company.

Erin had homework to do when she got back, but the combination of digestive issues as her body starts to re-regulate itself after three months on twice-a-day prophylactic antibiotics (hors d'oeuvres for the irinotecan) and truck-riding mingled with ground sleeping put her to bed fairly early. Not to worry, she got up a half hour early to finish off the leftover work and make it to school on time (To the incredulous among you: that's right. We work and go to school on Labor Day, and I can't begin to explain why.).

I tried to talk to Erin about that scans and changing treatment plan when I tucked her in Sunday night. (To that point, we had just had a quick conversation on Friday after school when I told her the results of the scans and that we would have to try something else.) She had said she would prefer the her treatment "not cut into her free time too much," but whatever we decided was fine. I sensed she wanted to say something more, so I waited. Eventually, I asked her if she was scared. She whispered "yes." I asked her what scared her. She looked me straight in the eyes, and said she was afraid of forgetting to wear her i.d. and of going down the wrong hall and getting lost at school. She also thought she might accidentally break a rule or arrive to class tardy. I had envisioned a lot of things that might scare her, but navigating the middle-school jungle was not one of them. I reassured her about the transition to her new school and left the door open to talk about other things on her mind. We brushed lightly against a few of the biggies, but obviously school was the driver.

Erin's school day went fine on Monday (I think she stopped in for a tylenol at the nurse's office at some point). We stopped by the meat market (steak) and the bookstore (the new Eragon sequel won't be in until September 19) after school. Then we chose to float around in the lake for about an hour before I started dinner and she started homework, letting the muddy water wash away our cares and refresh our spirits. I wish she felt 100% and that we weren't facing such a long road. I jump in my skin over every complaint of tiredness, backache, stomach pain, and headache. I'll let you know when we have a map for the next section of the road.

In the meantime, consider taking a virtual walk with us. September is National Childhood Cancer Awareness Month. CureSearch, one of our favorite advocacy organizations, is holding Virtual Walk for 12,500. A ten dollar donation buys a virtual walker. CureSearch hopes to create at least one virtual walker for each of 12,500 children who will get a diagnosis like Erin's this year (frankly, I hope for much more). The money goes to research, the only thing we can't buy for Erin out of our own pocket.

If walking, even virtually, is not for you, send the ten bucks to Lunch for Life and help fund research specific to neuroblastoma. We want to keep our pallet of options growing, even as we plow through various treatment plans.

Live Life to the Max!

September 1, 2008

No feeling sorry for ourselves because Erin's tumor progressed. We have to live life to the max in honor and memory of Max Mikulak who died last night (age seven).