October 23, 2008
I found it tough to choose which title to give the entry today, the one you got "Funny, She Doesn't Look Dead" or the runner up, "Don't Expect Me to Eat Food That Sat Next to Pee."
Background on "Doesn't Look Dead":
We went to University Pediatrics to have blood counts done on Tuesday after school. Erin hopped up in her usual seat (no, not the chair for blood draws. She sits at Janine's workstation and plays spider solitaire while she has her labs done). Janine did the finger stick, as usual, and ran the sample through the handy desktop machine that analyzes the sample. I leaned back against the counter, watching and speculating about what numbers the machine would reveal. I figured stable or slightly dropping white count and ANC, stable hemoglobin, and an upward trend on platelets. The machine hung up temporarily, recounting the platelets (hint: this is not a good sign). When the numbers finally registered, everything was lower than it had been last Friday, including hemoglobin which had dropped to from 10.2 to 6.5 (remember we transfuse below 8.).
I started trying to figure out how to work a transfusion into the schedule. To buy time I asked Janine to run the sample again. She did, and when the numbers finally percolated out onto the screen, everything was even lower, including her hemoglobin which had dropped to 3.2. I looked over at Erin, bebopping to the music coming from Janine's workstation and wondered how she had walked up the four flights of stairs to the doctor's office with 25% of normal hemoglobin. The only thing that popped to mind was "Funny, she doesn't look that dead to me."
Rather than panic, we drew a second sample and had more reasonable results:
HGB 10.2 (same as last time and a helluva lot better than 3.2)
WBC 6400 (normal)
ANC 4500 (normal)
PLT 84,000 (headed in the right direction)
The only other news from UPA was that both of Erin's ears looked red from having all that standing water (or mucous or snot or whatever) between her ears. So she won a ten day supply of amoxicillan to nip the infection in the bud. I'm not ordinarily that quick to the trigger on antibiotics and ear infections, especially when Erin has decent counts. However, the presence of her PICC line and the certain hospitalization we earn with any fever over 101 makes me much more risk averse. I can take a little antibiotic-induced diarrhea in exchange for sleeping in my own bed at night.
Background on "Don't Expect Me to Eat Food That Sat Next to Pee":
Starting a new clinical trial always involves jumping over hurdles in the form of tests, evaluations, and screenings, so that the investigators have a baseline on various aspect of the patient's health before they start. One of the last minute items stipulated by the study was a twenty-four hour creatinine clearance measure. This involves one blood draw and collecting all of Erin's urine for twenty-four hours. I always try to break news to Erin ahead of time, because she really doesn't like those cancer-related surprises (who does, come to think of it?). Anyway, she was not down with the idea of collecting her urine for a day, mainly because she hates the way the little commode hat smells after the urine has sat there ripening for awhile. I told her that she wouldn't have to smell it. I would just pour it into a jug and stick it in the refrigerator. You would have thought I had offered to store dead lemurs next to the butter, "I just hope you don't expect me to eat a bite of food that has been sitting next to pee!"
It turned out that Erin's creatinine has been normal for so long that we didn't need a urine collection. That eased both Erin's concern about pee storage and my worry about collecting a clean sample if Erin had antibiotic triggered runs.
Maybe the title of the post should have been "Dodged Two Bullets."
In other news, Erin has enjoyed her first complete week at school since the semester started. It will culminate in the fall dance tomorrow night. She made it to piano for the second week straight, and though she's not cleared for soccer yet, things are feeling more normal than they have in a couple of months. Of course that may change on a dime, especially in light of treatment resuming next week. In the meantime, we're hoping for a gorgeous weekend.
Showing posts with label Lab Reports. Show all posts
Showing posts with label Lab Reports. Show all posts
Thursday, October 23, 2008
Saturday, October 18, 2008
I Have Responsibilities
October 18, 2008
A Day-Late Birthday Greeting to my baby sister, Kat (the B-I-G 4-0!). You never knew how great it would feel to earn a 4.0. Welcome to the fantastic decade.
So, with unchanged scans after two rounds of IV chemo (topo with vincristine and adriamycin and topo/cyclo), we face some decisions. Maybe the IV chemo stopped rapid progression (good thing), but maybe it didn't kill back the tumor like it should have (bad thing). That means we have to decide if we're going to use one or both of those again or change things up. The change up offered by Erin's doc is either ABT-751 or pemetrexed (both are phase II trials). We have next week off regardless of what we decide because if we continue some form of topo we wouldn't start until October 30, and the earliest we can start either of the others is October 28 (because of the mandatory wait time between therapies if you are starting a clinical trial). Honestly, we haven't decided which direction to jump yet, mainly because I tend to conduct a rather rigorous due diligence on these kinds of decisions (Hint, hint, if you have experience with any of these drugs, I'd love for you to weigh with your thoughts and opinions. Our e-mail is at the bottom of the page.).
If we do a trial, Erin will have to run down to Houston either the 24th or the 27th for bone marrow aspirations and biopsies, which we haven't done in three and a half years. I gave her the choice of going on Monday with the caveat that only Walter would go with her because I had class that I couldn't miss. She immediately protested that she couldn't possible go without me. I told she could also go on Friday, but I didn't know if she would feel like going to the school dance that night if she had just had her hips drilled. I added that I didn't even know if she intended on going to the dance, I just wanted to lay out her options. She said, "Of course, I'm going to the dance. The Student Council is sponsoring the dance. I'm the Treasurer. I have to be there. I have responsibilities."
So we tried to figure out how to arrange a Monday BMA. Ultimately, she decided she could go to Houston without me IF Walter would go ("because he's smart and can figure out all the details of where and when we need to do things so it goes efficiently"), AND if Moo would go ("because she's fun and entertaining"), AND if Jackson's mom, Shirlene, would go ("because she's calm"). Now, if I just took three people to replace in all the other parts of my life, my stock would really rise. . .
If you were wondering, Erin has thrown off almost all of the side effects of the two rounds of chemo and doesn't seem to have any tumor-related effects either. Her labs yesterday either looked super or were headed steadily up:
A Day-Late Birthday Greeting to my baby sister, Kat (the B-I-G 4-0!). You never knew how great it would feel to earn a 4.0. Welcome to the fantastic decade.
So, with unchanged scans after two rounds of IV chemo (topo with vincristine and adriamycin and topo/cyclo), we face some decisions. Maybe the IV chemo stopped rapid progression (good thing), but maybe it didn't kill back the tumor like it should have (bad thing). That means we have to decide if we're going to use one or both of those again or change things up. The change up offered by Erin's doc is either ABT-751 or pemetrexed (both are phase II trials). We have next week off regardless of what we decide because if we continue some form of topo we wouldn't start until October 30, and the earliest we can start either of the others is October 28 (because of the mandatory wait time between therapies if you are starting a clinical trial). Honestly, we haven't decided which direction to jump yet, mainly because I tend to conduct a rather rigorous due diligence on these kinds of decisions (Hint, hint, if you have experience with any of these drugs, I'd love for you to weigh with your thoughts and opinions. Our e-mail is at the bottom of the page.).
If we do a trial, Erin will have to run down to Houston either the 24th or the 27th for bone marrow aspirations and biopsies, which we haven't done in three and a half years. I gave her the choice of going on Monday with the caveat that only Walter would go with her because I had class that I couldn't miss. She immediately protested that she couldn't possible go without me. I told she could also go on Friday, but I didn't know if she would feel like going to the school dance that night if she had just had her hips drilled. I added that I didn't even know if she intended on going to the dance, I just wanted to lay out her options. She said, "Of course, I'm going to the dance. The Student Council is sponsoring the dance. I'm the Treasurer. I have to be there. I have responsibilities."
So we tried to figure out how to arrange a Monday BMA. Ultimately, she decided she could go to Houston without me IF Walter would go ("because he's smart and can figure out all the details of where and when we need to do things so it goes efficiently"), AND if Moo would go ("because she's fun and entertaining"), AND if Jackson's mom, Shirlene, would go ("because she's calm"). Now, if I just took three people to replace in all the other parts of my life, my stock would really rise. . .
If you were wondering, Erin has thrown off almost all of the side effects of the two rounds of chemo and doesn't seem to have any tumor-related effects either. Her labs yesterday either looked super or were headed steadily up:
HGB 10.2 (not quite normal but certainly enough juice to keep her going)
WBC 8200 (super)
ANC 6000 (super)
PLT 55,000 (still low, but should be fine by soccer next Tuesday)
Last night we had regular Erin at home for the first time in quite a long way. Not dragging from chemo. Not dragging from low hemoglobin. Not dragging from low white blood counts. Not dragging from the grind of keeping up with eight classes while missing at least one day each week. Not dragging from the disruption of her life. She bubbled. She prattled. She told funny stories. We beamed.
This morning has been second verse same as the first. She has a friend (Peyton McCracken) in from Oklahoma. They have ridden bikes, tromped around behind the dam, played Legos and roof ball. They helped me with the recycling (WARNING--OFF TOPIC STORY: I don't know when the last time I recycled, but it was before I sent the old van up to Dallas for Annabelle to drive during her senior year. Anyway, as the folks were unloading the stuff from the back of my van, a worker asked if the brown bottles were from my business. I said no and why did he ask. He said they couldn't take recycling from businesses. I think he just wondered how I could be so slim if I drank that much beer.)
Anyway, that's all for now. We're headed to Adam's birthday party in a couple of hours. If you have wondered about Willie lately and noticed I hadn't written much, you can check out The Davis Report and read the latest.
Last night we had regular Erin at home for the first time in quite a long way. Not dragging from chemo. Not dragging from low hemoglobin. Not dragging from low white blood counts. Not dragging from the grind of keeping up with eight classes while missing at least one day each week. Not dragging from the disruption of her life. She bubbled. She prattled. She told funny stories. We beamed.
This morning has been second verse same as the first. She has a friend (Peyton McCracken) in from Oklahoma. They have ridden bikes, tromped around behind the dam, played Legos and roof ball. They helped me with the recycling (WARNING--OFF TOPIC STORY: I don't know when the last time I recycled, but it was before I sent the old van up to Dallas for Annabelle to drive during her senior year. Anyway, as the folks were unloading the stuff from the back of my van, a worker asked if the brown bottles were from my business. I said no and why did he ask. He said they couldn't take recycling from businesses. I think he just wondered how I could be so slim if I drank that much beer.)
Anyway, that's all for now. We're headed to Adam's birthday party in a couple of hours. If you have wondered about Willie lately and noticed I hadn't written much, you can check out The Davis Report and read the latest.
Tuesday, October 14, 2008
We Don't Know Much
October 14, 2008
I have seen the stats on my page counter turning pretty rapidly since I got home about an hour ago, so I figured I better update, even if we don't know a lot. The preliminary report on the CT scan is that Erin's tumor area hasn't really changed one way or another since late August. There have been many times in the past when unchanged was a satisfying outcome, but after doing two round of IV chemo we were hoping for more. We won't have the final report or the report on the bone scan until Thursday.
As it stands now, we have to make some decisions about what to do next. If we continue doing what we've done, we won't start that until October 30. If we change things up and choose a trial, Erin wouldn't be eligible to start something new until October 28. That gives us a reasonable window (two weeks) to consider our options.
For the record, Erin's labs today were mostly good:
I have seen the stats on my page counter turning pretty rapidly since I got home about an hour ago, so I figured I better update, even if we don't know a lot. The preliminary report on the CT scan is that Erin's tumor area hasn't really changed one way or another since late August. There have been many times in the past when unchanged was a satisfying outcome, but after doing two round of IV chemo we were hoping for more. We won't have the final report or the report on the bone scan until Thursday.
As it stands now, we have to make some decisions about what to do next. If we continue doing what we've done, we won't start that until October 30. If we change things up and choose a trial, Erin wouldn't be eligible to start something new until October 28. That gives us a reasonable window (two weeks) to consider our options.
For the record, Erin's labs today were mostly good:
HGB 9.9 (the transfusion seems to have stuck)
WBC 4800 (close to normal)
ANC 2900 (normal, and to me shocking, since she has never been this high on Day 12 of the previous nine round of this chemo combo)
PLT 24,000 (not good for soccer or kick boxing, but not quite to the point where we transfuse)
Thursday, October 9, 2008
Highlights and Lowlights
October 9, 2008
Erin did get her neulasta injection and flu shot on Tuesday, and she was neither neutrapenic nor transfusable (though close on hemoglobin, 8.4, where below 8.0 earns you a unit of packed red cells) that day, clearing the deck for the rest of the school week. Wednesday had its highs and lows. Erin stayed after school for Student Council and gave her spiel about why they should vote for her for Treasurer. That evening she did a little homework, but like Tuesday night she was way sluggish and her head throbbed (If you Google "low hemoglobin side effects," you will find the words "fatigue," "headache," "weakness," "confusion." You could just have easily seen a picture of Erin Wednesday evening.).
We had counts done again today, because I was sure that we had dropped below the magic number and wanted to avoid the weekend rush. Call me clairvoyant:
Since we waited fairly late in the day to have counts done, coordinating orders presented some obstacles for the local doc and the Houston doc. At first it looked like the Houston doc really wanted us in Houston tomorrow (you know. . .a five hour+ round trip, plus waiting in the infusion room on the busiest day of the week to be crossed and typed, waiting for the blood order to arrive in a city with heavy blood needs, and then waiting the three hours to transfuse. You do the math.). I couldn't think of a single reason why that sounded like a good idea. Especially, since Erin could drop by the local hospital on the way home from clinic this evening for crossing and typing, and just show up after school tomorrow at the hospital, watch a few movies, play some games, and order pizza in a private room during the three hours transfusion, and then drive twelve minutes home.
Luckily, the Houston doc saw it our way.
We did have another lowlight getting crossed and typed this evening. The lab techs insisted on sticking Erin for the blood sample instead of using her PICC line. They didn't even change their mind when Erin pointed out how stupid that was, since that was the whole point of having a PICC line. Sigh. However, by mixing in the news that Erin didn't have to miss the school awards ceremony tomorrow, where she will receive an award for academic honor roll the first six weeks (missing only eleven of 25 days), and that she won her election as Student Council Treasurer, we were able to balance out the lows with the highs. [NOTE: I also had to promise to give her all of the money in my wallet, towards her saving project of buying her own trampoline, if she let the tech poke her.]
We'd like to end the week on an even higher note: Erin is having an Open House at St. Joseph's Hospital tomorrow, starting at about 4:30 and continuing until about 8:00 or 9:00. She will have decks of cards and some movies. I'll probably order pizza. If you would like to stop by to say hi we'd welcome your company. Ask at the information desk which room they have assigned her to, or give me a call on my cell. Be there or be square.
Erin did get her neulasta injection and flu shot on Tuesday, and she was neither neutrapenic nor transfusable (though close on hemoglobin, 8.4, where below 8.0 earns you a unit of packed red cells) that day, clearing the deck for the rest of the school week. Wednesday had its highs and lows. Erin stayed after school for Student Council and gave her spiel about why they should vote for her for Treasurer. That evening she did a little homework, but like Tuesday night she was way sluggish and her head throbbed (If you Google "low hemoglobin side effects," you will find the words "fatigue," "headache," "weakness," "confusion." You could just have easily seen a picture of Erin Wednesday evening.).
We had counts done again today, because I was sure that we had dropped below the magic number and wanted to avoid the weekend rush. Call me clairvoyant:
HGB 7.4 (ding, ding, ding, we have a winner! Grand prize: transfusion)
WBC 7300 (excellent)
ANC 6200 (excellent, could the neulasta be working already?)
PLT 115,000 (still okay)
Since we waited fairly late in the day to have counts done, coordinating orders presented some obstacles for the local doc and the Houston doc. At first it looked like the Houston doc really wanted us in Houston tomorrow (you know. . .a five hour+ round trip, plus waiting in the infusion room on the busiest day of the week to be crossed and typed, waiting for the blood order to arrive in a city with heavy blood needs, and then waiting the three hours to transfuse. You do the math.). I couldn't think of a single reason why that sounded like a good idea. Especially, since Erin could drop by the local hospital on the way home from clinic this evening for crossing and typing, and just show up after school tomorrow at the hospital, watch a few movies, play some games, and order pizza in a private room during the three hours transfusion, and then drive twelve minutes home.
Luckily, the Houston doc saw it our way.
We did have another lowlight getting crossed and typed this evening. The lab techs insisted on sticking Erin for the blood sample instead of using her PICC line. They didn't even change their mind when Erin pointed out how stupid that was, since that was the whole point of having a PICC line. Sigh. However, by mixing in the news that Erin didn't have to miss the school awards ceremony tomorrow, where she will receive an award for academic honor roll the first six weeks (missing only eleven of 25 days), and that she won her election as Student Council Treasurer, we were able to balance out the lows with the highs. [NOTE: I also had to promise to give her all of the money in my wallet, towards her saving project of buying her own trampoline, if she let the tech poke her.]
We'd like to end the week on an even higher note: Erin is having an Open House at St. Joseph's Hospital tomorrow, starting at about 4:30 and continuing until about 8:00 or 9:00. She will have decks of cards and some movies. I'll probably order pizza. If you would like to stop by to say hi we'd welcome your company. Ask at the information desk which room they have assigned her to, or give me a call on my cell. Be there or be square.
Thursday, October 2, 2008
Not Too Bad
October 2, 2008
Note that we have arrived in October. For me, that means a fast downhill slide to New Year's. I give a mid-term on Monday. Projects roll in shortly after, followed by more exams, more homeworks, more projects. Halloween gets stuck in there and, of course, Thanksgiving. Before I can say Jack Robinson, finals come and go, leaving just enough time to shop and get the tree up for Christmas. I also have to fit a few rounds of chemo in and maybe a trip to Amsterdam (if the cards play out right). That's why I'm enjoying this brief hiatus in Houston. [Note to self: when did I start categorizing chemo days as vacation days?]
Erin hated breaking away from school just when she had found a groove, but the new Macbook is giving her confidence that she won't be a world behind when she gets back to class next Tuesday. Today was the fastest Day One of the topless cyclone (topotecan/cyclophosphomide) we have ever had (If you only count infusion time, the critical path last four hours. When you add labs, an office visit, and any meandering by the staff, we usually count on closing clinic down. Today we were six hours start to finish. Whew!). Erin had perfectly normal chemistries, a decent liver panel, and a green light on her CBC:
HGB 9.0 (incrementally better than Monday)
WBC 3800 (a bit low, but fine)
ANC 2300 (normal and fine to start chemo)
PLT 177,000 (we have returned to a normal level, though not as good as Erin's usual)
We did have a couple of highlights in our day. Hans and Lara shared some time with us. Hans having another round of The Rhino while he waits for the green light to head to the City of Brotherly Love for MiBG treatment. Erin also let me slip out and get decent (rather than food court) food for lunch. We had Mediterranean bowls with shrimp, mushrooms, brocolli, and bowtie pasta with alfredo sauce. Yum. We also met a new NB patient: cute Michael who is only one, but a precious boy who is fighting the fight that none of want to fight and none of us want to lose. Erin and I had rented Nim's Island. I didn't expect Jodie Foster, especially a neurotic Jodie Foster. I don't think I liked it as well as Paper Moon, but compared to some of the movies I sit through with Erin, it was decent.
We hit the elevators by ten after 3:00 and never looked back. We decided to go see how the Houston zoo fared after Hurricane Ike. I can't imagine hunkering down at a zoo with a hurricane bearing down. I assume the animals would sense the disaster and panic. Things seemed a little worse for wear (and high winds), but our favorite animals came through and the damage appears manageable.
We're going to eat in the hotel tonight and then climb in bed to watch the debate. If we get an early start in the morning AND A LITTLE LUCK. we ought to make it home in time to enjoy a normal evening tomorrow. We'll wait at home on Saturday until they call us in with news that they have a room ready for us.
Until next time. . .
Tuesday, September 30, 2008
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.
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.
Friday, September 26, 2008
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.
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.
Friday, August 8, 2008
Help! My Telomeres Are Unraveling
August 8, 2008 (otherwise known as 08/08/08. . .doesn't it feel smooth to type that?)
I can just feel my telomeres unraveling. What, you may ask, is a telomere, and why don't I just put a knot mine or stitch them up?
Each person has telomere caps at the end of their chromosomes. This region acts as a buffer during cell division so that cells don't lose important chromosomes (and that oh-so-crucial information each contains). As long as you have intact telomeres, you have less chance of producing genetic anomalies. Unfortunately, your telomeres get shorter each time their cell divides. So as you age, the buffer function deteriorates and eventually tissue can't repair itself properly. This leads to a variety of maladies that we associate with old age.
Now you may ask yourself if Vickie is just complaining because she's getting old. No, definitely not. Telomeres shorten due to aging, but also because of stress. And this week has taken me to new peaks of stress.
The week began peacefully enough. Monday brought the beginning of the end to our New Mexican vacation, but I still had the luxury of sitting with my feet up on the balcony of our hotel, viewing the mountains and shivering just a little, while sipping my coffee and nibbling a warm chocolate chip cookie to start the day. By midday we had hit the road, and by Tuesday afternoon we had arrived back at Chez Buenger, facing piles of mail and newspapers, a plethora of phone messages, and an e-mail queue longer than the line for the bathroom at an Aggie game. We had a week to get Davis packed for 18 weeks in Hungary (did you know that Hungarians spend forints, not euros?) and clinic in Houston for Erin, plus more placement testing for the school year and soccer revving back up with practices every evening. My "to do" list also contained a variety of extended family obligations about which I can't share details, but it involved opening bank accounts, transferring vehicle titles, and making applications to various state agencies.
Yet even in the midst of knocking off items from the list (while wondering if applying clear fingernail polish to my chromosome caps would keep them from unraveling further), I was struck with the idea of how pleasant it was to feel stressed over something other than Erin's cancer. Of course, I'm sure I'll add that to the mix in the coming week or two, since Scan Fiesta is on our docket for August 28.
Clinic went fine yesterday, quite similar to previous labs three weeks ago. We'll start round five of The Rhino on Monday morning (pre-dawn).
HGB 11.5 (normal)
WBC 2800 (low)
ANC 1430 (almost low normal)
PLT 316,000 (normal)
BUN 24 (5-25)
Creatinine .7 (.2-1.2)
Apparently, in our trip across the Texas and New Mexico desert on Monday and Tuesday, we missed the memo that the clinic closed down on Tuesday as a precaution against Eduardo. That meant that all the patients with Tuesday appointments showed up at clinic yesterday (and all apparently arrived moments before we did). We managed to pass the time successfully and with reasonable cheer primarily because Erin's great friend Ayesha joined us for the trip (in fact, she has joined us for an extended stay and playfest all week until Sunday). Our visit also coincided with a visit from Houston Dynamo defender Craig Weibel, so Erin and Ayesha got to join Weibel's Warriors and score a couple of cool orange Ts with Weibels signature across the front.
Erin fans, we also got to meet a newly diagnosed NB patient, Jessica Goff. She is pretty bummed about having to sit out this fall's soccer season, although she and her family have a great attitude and I'm sure will make it through this tough part of treatment with few problems. They have decorated her hospital room in a China-theme to celebrate the Olympics. It sounds like the Goffs, similar to the Buengers, travel heavy. Stop by her website: http://www.caringbridge.org/visit/jessicagoff and leave them all a message of encouragement.
I don't know when the fun will stop. My niece Annabelle went home yesterday, but my other niece, Emma, and my sister, Katherine arrive this afternoon for a long weekend of mischief and fun. Since I'm not ready to stop having fun I will leave you with vacation pics.
Here's a view from the hiking trail at Cloudcroft:
And our destination at the trail's end. This is the Mexican Canyon Trestle, an amazing railroad bridge built about a hundred years ago. Until the 1940's it was the only way, other than pack mule, to get to Cloudcroft. Note how tough it must have been to get supplies to this site 9,000 feet above sea level:
Here we are along the trail:
We also played miniature golf with Aunt Norma and Uncle Dave. Norma was the big winner (because she can actually putt accurately and calculate the pitch and rise for the holes).
Erin's no pro, but she does bring a certain sense of focus to her game:
I can just feel my telomeres unraveling. What, you may ask, is a telomere, and why don't I just put a knot mine or stitch them up?
Each person has telomere caps at the end of their chromosomes. This region acts as a buffer during cell division so that cells don't lose important chromosomes (and that oh-so-crucial information each contains). As long as you have intact telomeres, you have less chance of producing genetic anomalies. Unfortunately, your telomeres get shorter each time their cell divides. So as you age, the buffer function deteriorates and eventually tissue can't repair itself properly. This leads to a variety of maladies that we associate with old age.
Now you may ask yourself if Vickie is just complaining because she's getting old. No, definitely not. Telomeres shorten due to aging, but also because of stress. And this week has taken me to new peaks of stress.
The week began peacefully enough. Monday brought the beginning of the end to our New Mexican vacation, but I still had the luxury of sitting with my feet up on the balcony of our hotel, viewing the mountains and shivering just a little, while sipping my coffee and nibbling a warm chocolate chip cookie to start the day. By midday we had hit the road, and by Tuesday afternoon we had arrived back at Chez Buenger, facing piles of mail and newspapers, a plethora of phone messages, and an e-mail queue longer than the line for the bathroom at an Aggie game. We had a week to get Davis packed for 18 weeks in Hungary (did you know that Hungarians spend forints, not euros?) and clinic in Houston for Erin, plus more placement testing for the school year and soccer revving back up with practices every evening. My "to do" list also contained a variety of extended family obligations about which I can't share details, but it involved opening bank accounts, transferring vehicle titles, and making applications to various state agencies.
Yet even in the midst of knocking off items from the list (while wondering if applying clear fingernail polish to my chromosome caps would keep them from unraveling further), I was struck with the idea of how pleasant it was to feel stressed over something other than Erin's cancer. Of course, I'm sure I'll add that to the mix in the coming week or two, since Scan Fiesta is on our docket for August 28.
Clinic went fine yesterday, quite similar to previous labs three weeks ago. We'll start round five of The Rhino on Monday morning (pre-dawn).
HGB 11.5 (normal)
WBC 2800 (low)
ANC 1430 (almost low normal)
PLT 316,000 (normal)
BUN 24 (5-25)
Creatinine .7 (.2-1.2)
Apparently, in our trip across the Texas and New Mexico desert on Monday and Tuesday, we missed the memo that the clinic closed down on Tuesday as a precaution against Eduardo. That meant that all the patients with Tuesday appointments showed up at clinic yesterday (and all apparently arrived moments before we did). We managed to pass the time successfully and with reasonable cheer primarily because Erin's great friend Ayesha joined us for the trip (in fact, she has joined us for an extended stay and playfest all week until Sunday). Our visit also coincided with a visit from Houston Dynamo defender Craig Weibel, so Erin and Ayesha got to join Weibel's Warriors and score a couple of cool orange Ts with Weibels signature across the front.
Erin fans, we also got to meet a newly diagnosed NB patient, Jessica Goff. She is pretty bummed about having to sit out this fall's soccer season, although she and her family have a great attitude and I'm sure will make it through this tough part of treatment with few problems. They have decorated her hospital room in a China-theme to celebrate the Olympics. It sounds like the Goffs, similar to the Buengers, travel heavy. Stop by her website: http://www.caringbridge.org/visit/jessicagoff and leave them all a message of encouragement.
I don't know when the fun will stop. My niece Annabelle went home yesterday, but my other niece, Emma, and my sister, Katherine arrive this afternoon for a long weekend of mischief and fun. Since I'm not ready to stop having fun I will leave you with vacation pics.
Here's a view from the hiking trail at Cloudcroft:
And our destination at the trail's end. This is the Mexican Canyon Trestle, an amazing railroad bridge built about a hundred years ago. Until the 1940's it was the only way, other than pack mule, to get to Cloudcroft. Note how tough it must have been to get supplies to this site 9,000 feet above sea level:
Here we are along the trail:
We also played miniature golf with Aunt Norma and Uncle Dave. Norma was the big winner (because she can actually putt accurately and calculate the pitch and rise for the holes).
Erin's no pro, but she does bring a certain sense of focus to her game:
Friday, July 18, 2008
Back in the Groove
July 18, 2008
We had no sooner returned from Pittsburgh, ate, and slept before we had to hie ourselves to Houston for an office visit and labs in preparation for starting round 4 of irinotecan and temador. Erin was decidedly snippy at clinic (not being her first choice as an apres-vacances spot), but everything went smoothly enough (minimal delays since Dr. Russell had to catch a flight to Chicago for the Neuroblastoma Conference for a big panel discussion on relapsed NB).
HGB 12.1 (normal)
WBC 2870 (low)
ANC 1410 (almost low normal)
PLT 281,000 (normal)
BUN 20 (5-25)
Creatinine .7 (.2-1.2)
These are slightly better than the labs before we began round 3, so we were all satisfied. I quizzed Dr. Russell about the scan results from three weeks ago and looked carefully at them on the monitor. While the tumor area remains larger than it was in January (where you can't really see anything on the CT unless you know what you are looking for), it is at least 80 percent smaller than it was in May. I did not get a definitive answer to the question about whether Erin was MIBG avid again. The radiologist made the call that she was, but Dr. Russell and I think that the bright spot referred to in the report is more likely just an intestinal loop (which naturally takes up spotty bits of the tracer) in the general area of the tumor that shows on the CT scan. Any way, she is either MIBG avid, with no other spots anywhere in her body, or she's still not avid. The bottom line is that this particular scan doesn't add new information, so for the time being we are going to go back to the bone scan, rather than risk the higher radiation exposure of the MIBG, the nastiness of the lugol drops to protect the thyroid, and the inconvenience of a two day scan.
The other topic we spent some time with was Erin's overall reaction to this treatment plan. We have no complaints on digestive issues (the biggest concern going in), but Erin does express irritation with getting tired. This feeling peaks in the second week of treatment (irinotecan only) and is accompanied by some appetite loss. Frankly, I can't tell how seriously to take her on this topic. She says she wants to sleep in longer in the morning, and I know when there's nothing going on she sloths around. Parents of healthy eleven year olds, does this sound familiar? We're going to continue to monitor the situation. I'm uncomfortable with staying on a treatment over a long period of time that makes her feel "not herself" two weeks out of three, but the excellent response she had after two rounds gives me some reason to remain patient for now. Scans come up again in the first week of school (August 28). The other thing that we're keeping a close eye on is Erin's intermittent mention of back pain. This first came about five days after the June scans. Such rapid progression is not unheard of in the NB world, but had her tumor grown enough in five days to cause her back to hurt, another fifteen days at the same rate would put her in excruciating pain, which she doesn't have. In fact, even though she has had back pain, she has refused tylenol every time when offered. And the pain didn't keep her from walking multiple miles every day in Pittsburgh and didn't seem any worse having lurched and catapulted around on all of the most dangerous rides at Kennywood. The whole back thing leaves Walter and I puzzled. Perhaps the physical therapist will have something to add at her visit this afternoon.
Pittsburgh was great (no joke), and whether you like it or not, you will have Pittsburgh lessons over the next week or so. Here is the first:
This is not a tribute to robber barons of the nineteenth century, but rather the Cathedral of Learning at the University of Pittsburgh. “They shall find wisdom here and faith—in steel and stone, in character and thought—they shall find beauty, adventure, and moments of high victory.” Students attend classes in this building and lucky professors have their offices there.
You can also find old intermingled with new:
Robotic sheep to mow your grass:
Whimsical public art:
And the merely amazing (the columns of the Mellon Institute are the largest in the world in single pieces, as opposed to stacked sections):
I'll stop for now with a promise of more Pittsburgh later. Erin and I have laundry to do so we can re-pack and head to San Antonio tomorrow for a 3 v 3 soccer tournament. That's right. I ditched my plans to go to the neuroblastoma conference in Chicago so that I could sweat. I made that choice happily, because there are probably a finite number of soccer games in her future (I'm crossing my fingers for a finite number like 763 or 1215 and not eleven).
We had no sooner returned from Pittsburgh, ate, and slept before we had to hie ourselves to Houston for an office visit and labs in preparation for starting round 4 of irinotecan and temador. Erin was decidedly snippy at clinic (not being her first choice as an apres-vacances spot), but everything went smoothly enough (minimal delays since Dr. Russell had to catch a flight to Chicago for the Neuroblastoma Conference for a big panel discussion on relapsed NB).
HGB 12.1 (normal)
WBC 2870 (low)
ANC 1410 (almost low normal)
PLT 281,000 (normal)
BUN 20 (5-25)
Creatinine .7 (.2-1.2)
These are slightly better than the labs before we began round 3, so we were all satisfied. I quizzed Dr. Russell about the scan results from three weeks ago and looked carefully at them on the monitor. While the tumor area remains larger than it was in January (where you can't really see anything on the CT unless you know what you are looking for), it is at least 80 percent smaller than it was in May. I did not get a definitive answer to the question about whether Erin was MIBG avid again. The radiologist made the call that she was, but Dr. Russell and I think that the bright spot referred to in the report is more likely just an intestinal loop (which naturally takes up spotty bits of the tracer) in the general area of the tumor that shows on the CT scan. Any way, she is either MIBG avid, with no other spots anywhere in her body, or she's still not avid. The bottom line is that this particular scan doesn't add new information, so for the time being we are going to go back to the bone scan, rather than risk the higher radiation exposure of the MIBG, the nastiness of the lugol drops to protect the thyroid, and the inconvenience of a two day scan.
The other topic we spent some time with was Erin's overall reaction to this treatment plan. We have no complaints on digestive issues (the biggest concern going in), but Erin does express irritation with getting tired. This feeling peaks in the second week of treatment (irinotecan only) and is accompanied by some appetite loss. Frankly, I can't tell how seriously to take her on this topic. She says she wants to sleep in longer in the morning, and I know when there's nothing going on she sloths around. Parents of healthy eleven year olds, does this sound familiar? We're going to continue to monitor the situation. I'm uncomfortable with staying on a treatment over a long period of time that makes her feel "not herself" two weeks out of three, but the excellent response she had after two rounds gives me some reason to remain patient for now. Scans come up again in the first week of school (August 28). The other thing that we're keeping a close eye on is Erin's intermittent mention of back pain. This first came about five days after the June scans. Such rapid progression is not unheard of in the NB world, but had her tumor grown enough in five days to cause her back to hurt, another fifteen days at the same rate would put her in excruciating pain, which she doesn't have. In fact, even though she has had back pain, she has refused tylenol every time when offered. And the pain didn't keep her from walking multiple miles every day in Pittsburgh and didn't seem any worse having lurched and catapulted around on all of the most dangerous rides at Kennywood. The whole back thing leaves Walter and I puzzled. Perhaps the physical therapist will have something to add at her visit this afternoon.
Pittsburgh was great (no joke), and whether you like it or not, you will have Pittsburgh lessons over the next week or so. Here is the first:
This is not a tribute to robber barons of the nineteenth century, but rather the Cathedral of Learning at the University of Pittsburgh. “They shall find wisdom here and faith—in steel and stone, in character and thought—they shall find beauty, adventure, and moments of high victory.” Students attend classes in this building and lucky professors have their offices there.
You can also find old intermingled with new:
Robotic sheep to mow your grass:
Whimsical public art:
And the merely amazing (the columns of the Mellon Institute are the largest in the world in single pieces, as opposed to stacked sections):
I'll stop for now with a promise of more Pittsburgh later. Erin and I have laundry to do so we can re-pack and head to San Antonio tomorrow for a 3 v 3 soccer tournament. That's right. I ditched my plans to go to the neuroblastoma conference in Chicago so that I could sweat. I made that choice happily, because there are probably a finite number of soccer games in her future (I'm crossing my fingers for a finite number like 763 or 1215 and not eleven).
Wednesday, June 4, 2008
Recreational Infusions
June 4, 2008
My back feels better these days, but I notice I'm in the bathroom more frequently. And my appetite has dwindled. I'm definitely tireder.
It makes no logical sense, but just like husbands who experience sympathetic pregnancies with the resulting weight gain and food cravings, I think I have sympathetic neuroblastoma. All Erin has to do is mention a symptom or side effect, and I start channeling it. Not, of course, to the extent that Erin experiences it. Still, when her back hurt a lot this spring, I found that I would switch the seat warmer on in the driver's seat when I ferried her around town, just to help my achy back. And since she started irinotecan and temador, my back feels better, but my digestive track has suffered. I can't explain it, but as a mother, I just wish it were as easy as me taking over the pain, the digestive upset, the trauma of it all.
I do have to report on soccer tryouts: Erin played harder for longer than she has since spring break. At a water break about half way through tryouts, she came over and asked me for one of those "melt-in-your-mouth tablets" (zofran) because she thought she was going to throw up. I looked at her and considered pulling her off the field. Instead, I reached into my purse and handed her one. We exchanged a look. Without saying a word, she and I both had decided that she felt that way because it was 95 degrees with full humidity, she was out of playing shape, and she was working hard (I suspect everyone there was about to throw up). The zofran was the compromise she was willing to make to keep going. She finished out the session and rewarded herself by watching a couple of episodes of Star Trek Next Generation on television. I don't know if the trainers recognize that the fierce determination that gets her through treatment and has let her face cancer down for the last six years is exactly the determination they need their players to have. I hope it shines through, because on size and stamina alone, she might not measure up.
Clinic yesterday was a breeze, except that the staff has a new computer system that no one really understands. That's why Dr. Russell needed help to write Erin's prescriptions; that's why I had to take a phone survey that began "has your son ever had a CT scan before?" before I could get this month's scans scheduled (I guess doing scans every two or three months for six years doesn't excuse you from anything); that's also why it took an inordinate amount of time to schedule Erin's next appointment (see below). Oh well, none of that really mattered. Erin's counts can back stronger than I expected and about the same as last week:
HGB 9.5
WBC 4900
ANC 3400
PLT 395,000
She had gained the kilo back she had lost earlier last month and perhaps grown a half centimeter. This is the off week and we're set to start the second cycle of the Rhino next week.
Unfortunately (don't you hate paragraphs that start with unfortunately?), Dr. Russell nixed the idea that Erin could take week two of chemo at camp or forgo the second week or delay the second week. This turned Erin into a storm of gloom. Months ago, Erin had organized her summer around Mo Ranch. This was her first overnight camp opportunity, scheduled to encompass her birthday. It was the only firm plan she had. Everything else, in her mind was negotiable. Mo Ranch wasn't.
I guess the good news is that you can take the Rhino two ways: at home for two consecutive weeks or at clinic as an infusion for one week. So, next week, I'm going to teach each morning, then stow Erin, drive the two hours to Houston, let the nurses drip some toxic chemicals into her bloodstream, drive home, sleep, and re-start the cycle. I'm going to consider it a set of recreational infusions (with apologies to Spencer Dolling, who coined the term recreational transfusion for all those times he took a Friday blood or platelet transfusion even when he hadn't quite bottomed out so that he would be ready for a weekend of fun). We'll pack the chemo into one week, so Erin can move unfettered into week two and the healing powers of Mo Ranch. Let me know if you would like to join us for one of our daily outings.
My back feels better these days, but I notice I'm in the bathroom more frequently. And my appetite has dwindled. I'm definitely tireder.
It makes no logical sense, but just like husbands who experience sympathetic pregnancies with the resulting weight gain and food cravings, I think I have sympathetic neuroblastoma. All Erin has to do is mention a symptom or side effect, and I start channeling it. Not, of course, to the extent that Erin experiences it. Still, when her back hurt a lot this spring, I found that I would switch the seat warmer on in the driver's seat when I ferried her around town, just to help my achy back. And since she started irinotecan and temador, my back feels better, but my digestive track has suffered. I can't explain it, but as a mother, I just wish it were as easy as me taking over the pain, the digestive upset, the trauma of it all.
I do have to report on soccer tryouts: Erin played harder for longer than she has since spring break. At a water break about half way through tryouts, she came over and asked me for one of those "melt-in-your-mouth tablets" (zofran) because she thought she was going to throw up. I looked at her and considered pulling her off the field. Instead, I reached into my purse and handed her one. We exchanged a look. Without saying a word, she and I both had decided that she felt that way because it was 95 degrees with full humidity, she was out of playing shape, and she was working hard (I suspect everyone there was about to throw up). The zofran was the compromise she was willing to make to keep going. She finished out the session and rewarded herself by watching a couple of episodes of Star Trek Next Generation on television. I don't know if the trainers recognize that the fierce determination that gets her through treatment and has let her face cancer down for the last six years is exactly the determination they need their players to have. I hope it shines through, because on size and stamina alone, she might not measure up.
Clinic yesterday was a breeze, except that the staff has a new computer system that no one really understands. That's why Dr. Russell needed help to write Erin's prescriptions; that's why I had to take a phone survey that began "has your son ever had a CT scan before?" before I could get this month's scans scheduled (I guess doing scans every two or three months for six years doesn't excuse you from anything); that's also why it took an inordinate amount of time to schedule Erin's next appointment (see below). Oh well, none of that really mattered. Erin's counts can back stronger than I expected and about the same as last week:
HGB 9.5
WBC 4900
ANC 3400
PLT 395,000
She had gained the kilo back she had lost earlier last month and perhaps grown a half centimeter. This is the off week and we're set to start the second cycle of the Rhino next week.
Unfortunately (don't you hate paragraphs that start with unfortunately?), Dr. Russell nixed the idea that Erin could take week two of chemo at camp or forgo the second week or delay the second week. This turned Erin into a storm of gloom. Months ago, Erin had organized her summer around Mo Ranch. This was her first overnight camp opportunity, scheduled to encompass her birthday. It was the only firm plan she had. Everything else, in her mind was negotiable. Mo Ranch wasn't.
I guess the good news is that you can take the Rhino two ways: at home for two consecutive weeks or at clinic as an infusion for one week. So, next week, I'm going to teach each morning, then stow Erin, drive the two hours to Houston, let the nurses drip some toxic chemicals into her bloodstream, drive home, sleep, and re-start the cycle. I'm going to consider it a set of recreational infusions (with apologies to Spencer Dolling, who coined the term recreational transfusion for all those times he took a Friday blood or platelet transfusion even when he hadn't quite bottomed out so that he would be ready for a weekend of fun). We'll pack the chemo into one week, so Erin can move unfettered into week two and the healing powers of Mo Ranch. Let me know if you would like to join us for one of our daily outings.
Tuesday, May 27, 2008
Week One Done
May 27, 3008
I had intended to call this post "Week 1 in the Can" because I assumed Erin would spend more time in the bathroom than she actually did. As it was, she had an hour of diarrhea last Thursday and two other moments that we cut off with Imodium before she ever reached the State of Diarrhea. The rest of the time was "Normal. Full Speed Ahead." No nausea either. What I have noticed (for anyone who may be considering adopting The Rhino into their own household) is that Erin's energy pattern and eating habits have done some time shifting. She used to eat most heavily at breakfast and dinner and go pretty lightly at lunch (no criticism intended of her school cafeteria). Now she eats about the same at breakfast, pretty heartily at lunch and after school. If I wait too long on dinner, however, I have to toss most of it out. By about 8:00, her motor slows down considerably. We'll see if that pattern holds this evening. We have an event with Chet and Lea Ann Edwards that doesn't start until 7:00. She's resting now so she can keep the party going.
I didn't have any idea what to expect when we had counts done today. Surprisingly, she posted decent numbers:
HGB 9.4
WBC 5200
ANC 3920
PLT 376,000
As usual, Erin's hemoglobin is the least robust of her blood numbers and almost two points lower than two weeks ago. The chemistries were still pending when we got the signal that we could hit the highway. Not needing to hear that message twice, headed out, leaving instructions to let us know if anything fell out of range. No calls so far. We didn't see Dr. Russell today, who had some days off coming, but Dr. Murali seemed quite pleased that Erin is not longer taking anything, including plain old tylenol, for pain. He may have been pleased, but I have been virtually ecstatic for the past two pain-reliever-free days.
The Mystic '97 didn't pass on to the Houston Open semis, but the last two weekends have shown much improved play and great promise for next season. Erin has tryouts next week for next year's team, then we (the team, not just the Buengers) will take a month-long hiatus from practice. We managed to double up on Memorial Day cook-outs, spending Sunday evening with Erin's good buddy Jesse and his family and their delicious ribs and Monday at the Burchill's pool with Nico and Co., the Foote Clan, and hamburgers and hot dogs.
We checked blue bird boxes yesterday morning, and believe it or not, those mama and papa bluebirds are still getting after it on the egg laying/chick raising front. My mom's friend Manuelita took this photo of Erin and also the one after of our bird friend (blue heron). If you look carefully you can see that she also caught two bluebirds in the same frame (on top of the kickback goal).
I had intended to call this post "Week 1 in the Can" because I assumed Erin would spend more time in the bathroom than she actually did. As it was, she had an hour of diarrhea last Thursday and two other moments that we cut off with Imodium before she ever reached the State of Diarrhea. The rest of the time was "Normal. Full Speed Ahead." No nausea either. What I have noticed (for anyone who may be considering adopting The Rhino into their own household) is that Erin's energy pattern and eating habits have done some time shifting. She used to eat most heavily at breakfast and dinner and go pretty lightly at lunch (no criticism intended of her school cafeteria). Now she eats about the same at breakfast, pretty heartily at lunch and after school. If I wait too long on dinner, however, I have to toss most of it out. By about 8:00, her motor slows down considerably. We'll see if that pattern holds this evening. We have an event with Chet and Lea Ann Edwards that doesn't start until 7:00. She's resting now so she can keep the party going.
I didn't have any idea what to expect when we had counts done today. Surprisingly, she posted decent numbers:
HGB 9.4
WBC 5200
ANC 3920
PLT 376,000
As usual, Erin's hemoglobin is the least robust of her blood numbers and almost two points lower than two weeks ago. The chemistries were still pending when we got the signal that we could hit the highway. Not needing to hear that message twice, headed out, leaving instructions to let us know if anything fell out of range. No calls so far. We didn't see Dr. Russell today, who had some days off coming, but Dr. Murali seemed quite pleased that Erin is not longer taking anything, including plain old tylenol, for pain. He may have been pleased, but I have been virtually ecstatic for the past two pain-reliever-free days.
The Mystic '97 didn't pass on to the Houston Open semis, but the last two weekends have shown much improved play and great promise for next season. Erin has tryouts next week for next year's team, then we (the team, not just the Buengers) will take a month-long hiatus from practice. We managed to double up on Memorial Day cook-outs, spending Sunday evening with Erin's good buddy Jesse and his family and their delicious ribs and Monday at the Burchill's pool with Nico and Co., the Foote Clan, and hamburgers and hot dogs.
We checked blue bird boxes yesterday morning, and believe it or not, those mama and papa bluebirds are still getting after it on the egg laying/chick raising front. My mom's friend Manuelita took this photo of Erin and also the one after of our bird friend (blue heron). If you look carefully you can see that she also caught two bluebirds in the same frame (on top of the kickback goal).
Saturday, April 26, 2008
Woe is Willie
April 26, 2008
I never expected Willie to cost more than Luke. Willie came to us for free, a skinny stray pup with questionable parentage. Luke arrived without papers, as well, and never had that look about him that screamed pure bred. He also came with a price tag, $300, that allowed us to separate him from his unscrupulous and abusive owner and prove to Davis that sometimes having a generous heart is more important than having any sense. The toll for owning Luke has only increased with each passing year. Most of the bills come because Luke has taken it upon himself to familiarize himself with the American health care system for pets. Twice he was hospitalized after dog attacks. Despite weighing 95 pounds and living life like most yellow labs, as the friendliest doofus on the block, he has managed to accumulate hundreds of dollars worth of charges for treatments for lacerations and and other battle wounds. I swear, he has NEVER started a fight, and if you compared the damage he inflicted with the damage he got, you would never even believe he fought back, even for a second. Even bigger expenses have come, however, because he refuses to die of old age. At fifteen plus, we sort of expect him to keel over at any point. He doesn't. He may be the fittest geriatric patient at the A&M Small Animal Clinic. I think the young clinicians there plot ways of keeping him going, maybe in hopes of achieving new records. He has had a range of anti-inflammatory drugs (both steroidal and non-steroidal), hydrotherapy, and of course, pain management protocols. All of which come with a price tag.
So, Willie reaching the level of our six million dollar dog seemed unlikely. Two weeks ago, Willie was his normal, irrepressible self. Despite dire predictions to the contrary, he welcomed Erin's new dog Teddy into the household, showed her the ropes, and for the first time in his life had a friend to call his own. He was happy and fulfilled.
Then he took the big fall. You know about Achilles and his heel? Samson and his hair? Baldor and mistletoe? Willie's vulnerability was his eye. He ran up to me in the yard a couple of Saturdays ago, winking. At first I thought he was practicing so he could make a move on the girl dog down the street, but nope, he just had a bit of grass stuck in his eye. I pulled it out and he seemed okay. Over the next few days he started squinting noticeably in one eye, giving us a chance to poke fun at him with new nicknames: Winky, Squint, Pop-Eye. When it started looking worse rather than better, we headed to the vet. Oops, we all felt guilty for taunting him when we learned he had an infected eye ulcer. Some antibiotic eye drops every couple of hours on Wednesday and Thursday should have done the trick, but when the vet checked on Friday (a week ago, not yesterday), he was worse not better. We re-doubled our efforts, unfortunately without progress. The next time the vet saw him, he ordered mandatory kenneling at the clinic. (I fully believe that the vet thought he was dealing with incompetent humans who would lie about treating their dog and sell the unused antibiotics on the black market for cash profit.) Three days of special care at the vets (are you seeing how we think that Willie at age two has a good start at matching Luke's lifetime expenditure record), and he was unambiguously not better. I kept wishing for a secondary market where I could sell his eye goop to offset our vet bills. Yesterday the vet told us he couldn't do anything more. He made arrangements to have Willie transferred to the A&M Small Animal Clinic. The on-call emergency room doctor triaged him quickly (do pediatric hospitals have something to learn from vet hospitals?), and Walter and I (experienced enough in the waiting game to bring journals to read and papers to grade) waited. By 2:00 we headed home, Willie in tow.
By digging around a little the ophthalmologist found a second piece of grass living under the third lid of Willie's eye. (Did I even know dogs had three eyelids: upper, lower, and third? Nope, not until recently). Here is what Willie had carried in his eye for the last two weeks (not the dime, that's just there so you can see the size of the grass and wonder how it had eluded the first vet after repeated exams).
It might not look like it from this photo, but Willie is much better now (thanks in part because Walter and I set the alarm to go off at midnight, 2:00, 4:00, and 6:00 so we could continue the every two hour administration of meds to our boy). The misery expressed so poignantly on his face is from the embarrassment of having to dress like Queen Elisabeth for a least a few more days (you can click on the photo and get a really good idea of what his eye currently looks like).
In other medical news:
In an effort to keep Erin hydrated so that she can tolerate celebrex and cyclophosphamide without ruining her kidneys, I diluted Erin's hemoglobin down pretty effectively this month. Everything else looked quite good.
I never expected Willie to cost more than Luke. Willie came to us for free, a skinny stray pup with questionable parentage. Luke arrived without papers, as well, and never had that look about him that screamed pure bred. He also came with a price tag, $300, that allowed us to separate him from his unscrupulous and abusive owner and prove to Davis that sometimes having a generous heart is more important than having any sense. The toll for owning Luke has only increased with each passing year. Most of the bills come because Luke has taken it upon himself to familiarize himself with the American health care system for pets. Twice he was hospitalized after dog attacks. Despite weighing 95 pounds and living life like most yellow labs, as the friendliest doofus on the block, he has managed to accumulate hundreds of dollars worth of charges for treatments for lacerations and and other battle wounds. I swear, he has NEVER started a fight, and if you compared the damage he inflicted with the damage he got, you would never even believe he fought back, even for a second. Even bigger expenses have come, however, because he refuses to die of old age. At fifteen plus, we sort of expect him to keel over at any point. He doesn't. He may be the fittest geriatric patient at the A&M Small Animal Clinic. I think the young clinicians there plot ways of keeping him going, maybe in hopes of achieving new records. He has had a range of anti-inflammatory drugs (both steroidal and non-steroidal), hydrotherapy, and of course, pain management protocols. All of which come with a price tag.
So, Willie reaching the level of our six million dollar dog seemed unlikely. Two weeks ago, Willie was his normal, irrepressible self. Despite dire predictions to the contrary, he welcomed Erin's new dog Teddy into the household, showed her the ropes, and for the first time in his life had a friend to call his own. He was happy and fulfilled.
Then he took the big fall. You know about Achilles and his heel? Samson and his hair? Baldor and mistletoe? Willie's vulnerability was his eye. He ran up to me in the yard a couple of Saturdays ago, winking. At first I thought he was practicing so he could make a move on the girl dog down the street, but nope, he just had a bit of grass stuck in his eye. I pulled it out and he seemed okay. Over the next few days he started squinting noticeably in one eye, giving us a chance to poke fun at him with new nicknames: Winky, Squint, Pop-Eye. When it started looking worse rather than better, we headed to the vet. Oops, we all felt guilty for taunting him when we learned he had an infected eye ulcer. Some antibiotic eye drops every couple of hours on Wednesday and Thursday should have done the trick, but when the vet checked on Friday (a week ago, not yesterday), he was worse not better. We re-doubled our efforts, unfortunately without progress. The next time the vet saw him, he ordered mandatory kenneling at the clinic. (I fully believe that the vet thought he was dealing with incompetent humans who would lie about treating their dog and sell the unused antibiotics on the black market for cash profit.) Three days of special care at the vets (are you seeing how we think that Willie at age two has a good start at matching Luke's lifetime expenditure record), and he was unambiguously not better. I kept wishing for a secondary market where I could sell his eye goop to offset our vet bills. Yesterday the vet told us he couldn't do anything more. He made arrangements to have Willie transferred to the A&M Small Animal Clinic. The on-call emergency room doctor triaged him quickly (do pediatric hospitals have something to learn from vet hospitals?), and Walter and I (experienced enough in the waiting game to bring journals to read and papers to grade) waited. By 2:00 we headed home, Willie in tow.
By digging around a little the ophthalmologist found a second piece of grass living under the third lid of Willie's eye. (Did I even know dogs had three eyelids: upper, lower, and third? Nope, not until recently). Here is what Willie had carried in his eye for the last two weeks (not the dime, that's just there so you can see the size of the grass and wonder how it had eluded the first vet after repeated exams).
It might not look like it from this photo, but Willie is much better now (thanks in part because Walter and I set the alarm to go off at midnight, 2:00, 4:00, and 6:00 so we could continue the every two hour administration of meds to our boy). The misery expressed so poignantly on his face is from the embarrassment of having to dress like Queen Elisabeth for a least a few more days (you can click on the photo and get a really good idea of what his eye currently looks like).
In other medical news:
In an effort to keep Erin hydrated so that she can tolerate celebrex and cyclophosphamide without ruining her kidneys, I diluted Erin's hemoglobin down pretty effectively this month. Everything else looked quite good.
WBC 4.9 K/uL (4.0-13.5)
ANC 3.3 (1.5-7.8)
HGB 10.4 g/dL (11.5-14.5)
PLT 296 K/uL (140-440)
with
BUN 21 mg/dL (5-26)
Cr 1.0 mg/dL (0.5-1.5)
AST 37 IU/L (0-40)
ALT 20 IU/L (0-40)
All the other chemistries were normal, too. That's the last (hopefully) we will see of the clinic until May 13 when we go to Houston for scans.
Monday, March 24, 2008
Radio Silence
March 24, 2008
I haven't updated in a week. Have you noticed?
Besides the usual foot dragging that comes with leaving spring break behind and plunging back into the semester, we faced last week with Easter rushing at us at full speed and a pair of out-of-town soccer matches scheduled for Saturday. Did I mention we expected company for the weekend? Oh, and I got behind on midterm grading by actually taking a "Break," instead of laboring, so I had essays and reports to read every day.
Of course, we had to take time every day (I mean that literally) to stop in the Brazos Valley Animal Shelter. Erin has saved her shekels and now can afford to purchase her very own dog. (Asking whether we need a fourth dog is like asking whether I need another hole in my head.) Of course, we could forbid it, or even delay it until Luke has moved on to doggie heaven. However, that cunning child o'mine has used uncanny reasoning and negotiation skills to back us into a corner. Everything else she has listed that she might do with her hard-earned money does not fall into the category of Make Your Parents Jump Up and Down with Excitement and Anticipation. A new dog seems "the lesser of two weevils" so to speak.
So far, the Gods seem to be with us (Walter and I) on dragging the process out. Erin has very specific criteria for her dog-to-be: it must be mostly a non-barker (so it doesn't stir up the existing pack), it must be cute and lap-dog sized, and it must demonstrate that it will attach to her (not to her leg with its teeth). We have hit two out of three several times, but so far we haven't adopted. We'll try again this afternoon.
Erin also had counts done last Thursday (a little lackluster, in my opinion):
I haven't updated in a week. Have you noticed?
Besides the usual foot dragging that comes with leaving spring break behind and plunging back into the semester, we faced last week with Easter rushing at us at full speed and a pair of out-of-town soccer matches scheduled for Saturday. Did I mention we expected company for the weekend? Oh, and I got behind on midterm grading by actually taking a "Break," instead of laboring, so I had essays and reports to read every day.
Of course, we had to take time every day (I mean that literally) to stop in the Brazos Valley Animal Shelter. Erin has saved her shekels and now can afford to purchase her very own dog. (Asking whether we need a fourth dog is like asking whether I need another hole in my head.) Of course, we could forbid it, or even delay it until Luke has moved on to doggie heaven. However, that cunning child o'mine has used uncanny reasoning and negotiation skills to back us into a corner. Everything else she has listed that she might do with her hard-earned money does not fall into the category of Make Your Parents Jump Up and Down with Excitement and Anticipation. A new dog seems "the lesser of two weevils" so to speak.
So far, the Gods seem to be with us (Walter and I) on dragging the process out. Erin has very specific criteria for her dog-to-be: it must be mostly a non-barker (so it doesn't stir up the existing pack), it must be cute and lap-dog sized, and it must demonstrate that it will attach to her (not to her leg with its teeth). We have hit two out of three several times, but so far we haven't adopted. We'll try again this afternoon.
Erin also had counts done last Thursday (a little lackluster, in my opinion):
HGB: 11.4
WBC 3.1
ANC 1.8
PLT 262
BUN 29 (5-26), I wonder what Dr. Russell will have to say about this (it's no higher, but it's also no lower than last time)
Creatinine .9 (.5-1.5)
AST 33 (0-40)
ALT 20 (0-55), I threw these in because its pretty rare for Erin to have these liver function numbers bot in the normal range. That's a good thing.
I view all the busy-ness as particularly helpful last week. It gave me very little time to contemplate the ramifications of the fact that Erin was asking me for Tylenol for back pain almost every day, some times several times a day, and often first thing in the morning before she had done anything more strenuous than dragging herself out of bed and into the kitchen. She also had serial headaches. At times I hoped she would develop a fever or some other symptoms that would put her aches and pains in the context of some easily identifiable childhood illness (other than neuroblastoma), but nothing materialized. I was left continuously wanting to press her belly to feel for tumors bulging against her spine and searching her face for the telltale signs of raccoon eyes (both very real impulses for neuroblastoma parents)
Finally, on Thursday, when we went for blood labs, my anxiety had reached a level where I affably agreed to hang around the doctor's office for a couple of hours so that Dr. Parr could palpate Erin thoroughly. He could not feel a thing. After a long discussion of possibilities and in the absence of any other evidence, we think that Erin is just growing and putting a lot of strain on her back (which, because of the surgery to remove what we cheerfully refer to at our house as the atypical spindle cell neoplasm to distinguish it from other tumors Erin has grown, is missing quite a lot of muscle tissue necessary for back support. . .if you have no clue about what I am talking about, you might want to review entries from late summer and fall of 2004). She has an appointment with a physical therapist tomorrow to get an assessment and, hopefully, a program to help ease the pain and give her more strength, stability, and flexibility.
The pain didn't stop after Thursday, but I did re-group and start thinking about it differently (much less panick-y). We had a relaxing day of Friday with Erin's buddy Jesse over for some romping around and fresh hair cuts for both me and Erin. We checked the status of the blue bird boxes, and now have four hatched babies in each of two boxes, and eggs in waiting in six others. We also spent the evening eating and laughing with my sister Elisabeth and her daughter Annabelle. We were sure glad they made it down for (a much warmer) Easter this year.
Well, I've been holding back they news I should have led with, but if you have read this far, you deserve a reward. Erin scored her first goal in a real game. She scored the only goal her team made all day. She acted like she did that sort of thing all the time. Sydney dribbled the ball past her defender up the right side line and flicked a short pass to Megan at the edge of the 18-yard box. Megan got her head up (like we taught her) and spotted Erin standing near the 6-yard box and managed to get the ball right to Erin's feet. Erin took the pass with her outside foot, controlled it, and plugged it right past the keeper's weak side. Wow! A Kodak moment. It took the edge off the pain (and the pair of close losses: 0-1 and 1-2), leaving us ready to meet the hope of Easter head on.
Easter brought a lovely worship service, beginning with an Easter lily procession manned by the children of the church. Erin, Nico, and Adam, along with their compadres chimed their bells for some very special music. I have to say it was the most complex piece they had ever attempted, and they pulled it off well. Very inspiring. And it's always so cute to see their little furrowed brows, total concentration or their faces, and their lips moving in sync, counting out the beats of each measure.
We adjourned to a lovely restaurant for an Easter buffet (who had time to cook, much less shop?). Erin's church service art work, displayed above, provided a suitable centerpiece for our table. We even got Willie to look at the camera, almost, for the family snapshots when we got back home.
I ended the weekend with my own Easter miracle. My soccer team (the Soccer Mom's Club) recorded our first non-loss, a 4-4 tie against the team from St. Mary's. I suspect they were not at their best having celebrated the day, no doubt, in much grander style than us.
I view all the busy-ness as particularly helpful last week. It gave me very little time to contemplate the ramifications of the fact that Erin was asking me for Tylenol for back pain almost every day, some times several times a day, and often first thing in the morning before she had done anything more strenuous than dragging herself out of bed and into the kitchen. She also had serial headaches. At times I hoped she would develop a fever or some other symptoms that would put her aches and pains in the context of some easily identifiable childhood illness (other than neuroblastoma), but nothing materialized. I was left continuously wanting to press her belly to feel for tumors bulging against her spine and searching her face for the telltale signs of raccoon eyes (both very real impulses for neuroblastoma parents)
Finally, on Thursday, when we went for blood labs, my anxiety had reached a level where I affably agreed to hang around the doctor's office for a couple of hours so that Dr. Parr could palpate Erin thoroughly. He could not feel a thing. After a long discussion of possibilities and in the absence of any other evidence, we think that Erin is just growing and putting a lot of strain on her back (which, because of the surgery to remove what we cheerfully refer to at our house as the atypical spindle cell neoplasm to distinguish it from other tumors Erin has grown, is missing quite a lot of muscle tissue necessary for back support. . .if you have no clue about what I am talking about, you might want to review entries from late summer and fall of 2004). She has an appointment with a physical therapist tomorrow to get an assessment and, hopefully, a program to help ease the pain and give her more strength, stability, and flexibility.
The pain didn't stop after Thursday, but I did re-group and start thinking about it differently (much less panick-y). We had a relaxing day of Friday with Erin's buddy Jesse over for some romping around and fresh hair cuts for both me and Erin. We checked the status of the blue bird boxes, and now have four hatched babies in each of two boxes, and eggs in waiting in six others. We also spent the evening eating and laughing with my sister Elisabeth and her daughter Annabelle. We were sure glad they made it down for (a much warmer) Easter this year.
Well, I've been holding back they news I should have led with, but if you have read this far, you deserve a reward. Erin scored her first goal in a real game. She scored the only goal her team made all day. She acted like she did that sort of thing all the time. Sydney dribbled the ball past her defender up the right side line and flicked a short pass to Megan at the edge of the 18-yard box. Megan got her head up (like we taught her) and spotted Erin standing near the 6-yard box and managed to get the ball right to Erin's feet. Erin took the pass with her outside foot, controlled it, and plugged it right past the keeper's weak side. Wow! A Kodak moment. It took the edge off the pain (and the pair of close losses: 0-1 and 1-2), leaving us ready to meet the hope of Easter head on.
Easter brought a lovely worship service, beginning with an Easter lily procession manned by the children of the church. Erin, Nico, and Adam, along with their compadres chimed their bells for some very special music. I have to say it was the most complex piece they had ever attempted, and they pulled it off well. Very inspiring. And it's always so cute to see their little furrowed brows, total concentration or their faces, and their lips moving in sync, counting out the beats of each measure.
We adjourned to a lovely restaurant for an Easter buffet (who had time to cook, much less shop?). Erin's church service art work, displayed above, provided a suitable centerpiece for our table. We even got Willie to look at the camera, almost, for the family snapshots when we got back home.
I ended the weekend with my own Easter miracle. My soccer team (the Soccer Mom's Club) recorded our first non-loss, a 4-4 tie against the team from St. Mary's. I suspect they were not at their best having celebrated the day, no doubt, in much grander style than us.
Friday, February 22, 2008
Award-Winning Studette
February 22, 2008
The blood chemistries and CBC came back this afternoon. I had hoped for better:
Hemoglobin: 11.4 (low normal)
Platelets: 206,000 (sort of low for Erin, but just fine)
White blood count: 3500 (lowish)
ANC: 2100 (low normal)
BUN: 25 (high)
Glucose: 117 (high. . .don't stop at Sonic before counts)
AST: 46 (high)
ALT: 38 (high)
everything else normal
What does this mean? I hope Erin's doctor interprets the high BUN as a result of a bad health week and a reaction to the antiobiotics, rather than weak kidneys.
As you can see, Erin looks like she has made a complete recovery. She received two awards today, one for P.E. prowess and the other for her volunteer work after school for the student council.
The blood chemistries and CBC came back this afternoon. I had hoped for better:
Hemoglobin: 11.4 (low normal)
Platelets: 206,000 (sort of low for Erin, but just fine)
White blood count: 3500 (lowish)
ANC: 2100 (low normal)
BUN: 25 (high)
Glucose: 117 (high. . .don't stop at Sonic before counts)
AST: 46 (high)
ALT: 38 (high)
everything else normal
What does this mean? I hope Erin's doctor interprets the high BUN as a result of a bad health week and a reaction to the antiobiotics, rather than weak kidneys.
As you can see, Erin looks like she has made a complete recovery. She received two awards today, one for P.E. prowess and the other for her volunteer work after school for the student council.
Thursday, January 31, 2008
Quick Counts
January 31, 2008
After sluggish counts at the beginning of the month, I am proud to report Erin's CBC registered in the normal reference range on everything when we had counts done today.
With everything nasty that's going around Erin's school and (seemingly) everywhere else she goes, I am relieved to see that she can mount a response to any infections or viruses she encounters. For you locals, Erin was the Smile of the Day in The Eagle this morning. With all the thunderstorms that passed through it was nice to have something to brighten the breakfast table.
After sluggish counts at the beginning of the month, I am proud to report Erin's CBC registered in the normal reference range on everything when we had counts done today.
WBC 4.5 K/uL
ANC 2.9
HGB 11.8 g/dL
PLT 312 K/uL
With everything nasty that's going around Erin's school and (seemingly) everywhere else she goes, I am relieved to see that she can mount a response to any infections or viruses she encounters. For you locals, Erin was the Smile of the Day in The Eagle this morning. With all the thunderstorms that passed through it was nice to have something to brighten the breakfast table.
Monday, November 5, 2007
Erin Needs Your Help
November 5, 2007
We spend a lot of time forgetting that Erin has cancer. We focus on her great grades. We relish watching her make a quick tackle, followed by a splendid turn on the ball to throw the attacker off and start the offense for her team. We revel in the charm of her smile and the radiance that overflows from her eyes. We grin at her wit. I spent a long twenty minutes with her yesterday exploring what college courses she should take to prepare herself to serve as our nation's president, and another long spell staring at a mother spider who had just hatched a host of spider babes.
All these moments help fade the fact that she's ten and been staring cancer in the face more than half her life. . .the fact that relapsed neuroblastoma has no cure (yet).
If you are a Texans and a registered voter, you have the opportunity to help Erin, possibly directly, and certainly indirectly, by voting YES for Proposition 15.
Children's Neuroblastoma Cancer Foundation has launched this year's Lunch for Life. Once again, we are getting into the holiday spirit by asking folks to give up their lunch to help find and fund a cure for neuroblastoma.
I just visited the link and it took less than a minute to give up my lunch! If you're skeptical, spend some time on the Lunch for Life website. ALL FUNDS raised through Lunch for Life go directly to support neuroblastoma research and initiatives. Erin might not benefit from the research, and it might not save her life, but we hope it will. We want to wipe neuroblastoma off of the face of the earth!
One thing you will notice if you have visited Lunch for Life before, the web page has a new look. More importantly, there are new ways to get involved: in your neighborhood and at work. If you have ever thought about passing it forward, this would be the place to start.
One final word on Erin.
I just received the final blood lab report from Erin's work up last week. Nothing in the CBC was quite as good as last month:
WBC 3,300
ANC 1,700
HGB 11.3
PLT 245,000
but the chemistries were all normal. We also measured quantitative immunoglobulins to see if her body has the ability to mount an immune response if faced with viral or bacterial infection. No real surprise that she measured lower than normal (IGg-511 mg/dL when the reference range is 690-1560 for her age and size). Walter and I are investigating how to get her an infusion (IVIG) that would boost her immune system. In the meantime, don't cough on her, smear your boogers on her, or offer her bons bons that you have already licked. In fact, I think you should get into the habit, when someone sneezes, of saying "Bless you. Sanitize." like the children in Erin's fifth grade class do.
We spend a lot of time forgetting that Erin has cancer. We focus on her great grades. We relish watching her make a quick tackle, followed by a splendid turn on the ball to throw the attacker off and start the offense for her team. We revel in the charm of her smile and the radiance that overflows from her eyes. We grin at her wit. I spent a long twenty minutes with her yesterday exploring what college courses she should take to prepare herself to serve as our nation's president, and another long spell staring at a mother spider who had just hatched a host of spider babes.
All these moments help fade the fact that she's ten and been staring cancer in the face more than half her life. . .the fact that relapsed neuroblastoma has no cure (yet).
If you are a Texans and a registered voter, you have the opportunity to help Erin, possibly directly, and certainly indirectly, by voting YES for Proposition 15.
Proposition 15 is a constitutional amendment to establish the Cancer Prevention and Research Institute of Texas to:
- Conduct research to prevent or cure cancer
- Support existing cancer research efforts in Texas
- Implement the Texas Cancer Plan, a statewide blueprint for cancer prevention and control
If passed, Prop 15 will authorize up to $3 billion in state general revenue bonds to fund cancer research, prevention, early detection and control programs.
In 2003 the director of the National Cancer Institute stated that we could eliminate cancer suffering and death by 2015. Since that time the Bush administration has cut the NCI budget three consecutive years making the goal unlikely to be reached by that time. The funding level now is less than $5 billion for all cancer research. The amount allocated to children's cancer is less than 5% of that. All of cancer research funding is equivalent to what is spent in Iraq in just a few days and the equivalent amount spent on pediatric cancer research is spent in Iraq in minutes.If the nation does not view cancer research as a priority, Texans have the opportunity to step into the breach. Did you know that Texas has more children with cancer than Canada does? Can we get some budgeting priorities right? Please vote and encourage others to do so as well.
Even if you don't live in Texas, you can help. Our regular holiday message is GIVE UP YOUR LUNCH FOR ERIN.
Children's Neuroblastoma Cancer Foundation has launched this year's Lunch for Life. Once again, we are getting into the holiday spirit by asking folks to give up their lunch to help find and fund a cure for neuroblastoma.
Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation you make on Erin's behalf has three effects: 1) her tree receives one ornament for every $5 you donate; 2) every donation generates a Giving Code that gets Erin bonus ornaments if you pass it on to a friend to use; and 3) each ornament creates one entry for that child into our Disney World giveaway. For example, if I give up lunch all week ($5/day) and donate $25 to Erin's tree, she gets 5 ornaments on her tree and 5 contest entries. I also get a Giving Code to pass along. (PLEASE NOTE: Erin's Giving Tree Code is 24730) When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again.
I just visited the link and it took less than a minute to give up my lunch! If you're skeptical, spend some time on the Lunch for Life website. ALL FUNDS raised through Lunch for Life go directly to support neuroblastoma research and initiatives. Erin might not benefit from the research, and it might not save her life, but we hope it will. We want to wipe neuroblastoma off of the face of the earth!
One thing you will notice if you have visited Lunch for Life before, the web page has a new look. More importantly, there are new ways to get involved: in your neighborhood and at work. If you have ever thought about passing it forward, this would be the place to start.
One final word on Erin.
I just received the final blood lab report from Erin's work up last week. Nothing in the CBC was quite as good as last month:
WBC 3,300
ANC 1,700
HGB 11.3
PLT 245,000
but the chemistries were all normal. We also measured quantitative immunoglobulins to see if her body has the ability to mount an immune response if faced with viral or bacterial infection. No real surprise that she measured lower than normal (IGg-511 mg/dL when the reference range is 690-1560 for her age and size). Walter and I are investigating how to get her an infusion (IVIG) that would boost her immune system. In the meantime, don't cough on her, smear your boogers on her, or offer her bons bons that you have already licked. In fact, I think you should get into the habit, when someone sneezes, of saying "Bless you. Sanitize." like the children in Erin's fifth grade class do.
Tuesday, October 16, 2007
Why Don't I Trust My Own Eyes?
October 16, 2007
I have watched Erin since July, when she had an elevated TSH (thyroid-stimulating hormone) level in one of her blood labs. TSH isn't something we test very often, so we really didn't have much to compare it to. A consistently high TSH would indicate hypothyroidism (something that would need daily medication, so Erin could grow properly and have enough energy to do the things she wanted to do).
At the time I gave her doctor a "What?-Are-You-Crazy" look, because she knows as well as we all do, that Erin hits the ground running every single day and never shows signs of hypothyroidism (fatigue, sleepiness, weight gain, decreased concentration, etc.). That's when I learned of the condition called subclinical hypothyroidism. Subclinical means you show no clinical signs of disease. It happens when the thyroid may be damaged (How would a thyroid get damaged? Oh, use your imagination. . .perhaps by radiation to the throat, which happens when you have radiation to your total body), but it compensates for the damage by working overtime, putting even more stress on the endocrine system. People with subclinical hypothyroidism can solve most of their problems by taking medicine, but once they start, they usually have to take it for the rest of their lives.
I so didn't want Erin to have to add another set of daily meds to her kit. Frankly, I was prepared to keep her off the meds, unless the doctor made a very compelling case that she needed them. I mean, what's the point of having a beautiful, not over-stressed thyroid if you think you won't have ample opportunity to use it later in life? Her oncologist wasn't terribly worried last summer, but she did suggest scheduling an appointment with an endocrinologist when we came in for scans, just to have a specialist's view point.
So since July, I have watched Erin to see if I could see signs of a struggling thyroid, and since October 2 (after the endocrinology appointment), I've been waiting for the test results that would confirm a thyroid problem.
They came today:
I have watched Erin since July, when she had an elevated TSH (thyroid-stimulating hormone) level in one of her blood labs. TSH isn't something we test very often, so we really didn't have much to compare it to. A consistently high TSH would indicate hypothyroidism (something that would need daily medication, so Erin could grow properly and have enough energy to do the things she wanted to do).
At the time I gave her doctor a "What?-Are-You-Crazy" look, because she knows as well as we all do, that Erin hits the ground running every single day and never shows signs of hypothyroidism (fatigue, sleepiness, weight gain, decreased concentration, etc.). That's when I learned of the condition called subclinical hypothyroidism. Subclinical means you show no clinical signs of disease. It happens when the thyroid may be damaged (How would a thyroid get damaged? Oh, use your imagination. . .perhaps by radiation to the throat, which happens when you have radiation to your total body), but it compensates for the damage by working overtime, putting even more stress on the endocrine system. People with subclinical hypothyroidism can solve most of their problems by taking medicine, but once they start, they usually have to take it for the rest of their lives.
I so didn't want Erin to have to add another set of daily meds to her kit. Frankly, I was prepared to keep her off the meds, unless the doctor made a very compelling case that she needed them. I mean, what's the point of having a beautiful, not over-stressed thyroid if you think you won't have ample opportunity to use it later in life? Her oncologist wasn't terribly worried last summer, but she did suggest scheduling an appointment with an endocrinologist when we came in for scans, just to have a specialist's view point.
So since July, I have watched Erin to see if I could see signs of a struggling thyroid, and since October 2 (after the endocrinology appointment), I've been waiting for the test results that would confirm a thyroid problem.
They came today:
T4,Free(Direct) 1.12 ng/dL 0.82 - 1.58
TSH 4.415 uIU/mL 0.360 - 5.800
THYROXINE (T4) 6.9 ug/dL 4.5 - 12.0
ANTITHYROGLOBULIN Ab <20>
What a relief! I thought of the punch line to the old joke: "Are you going to believe me, or them lying eyes of yours?
I think I'll stick to my lying eyes.
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