01/27/06
Just a quickie today. Erin had blood counts done yesterday. It was Day 11 of 21 days (hump day for this cycle). With all the chemos Erin has done in the past Day 11 was usually a pretty important day. It was the day Erin was most likely to have the lowest white blood counts and be the most susceptible to germs or infections. We tended to keep a low profile on Days 10 to Day 13 or so, just to be on the safe side. I knew that oral etoposide was supposed to be "easy" on the counts, but so was topo/cyclo. Even with neulasta support (the injection to build her white counts), with topo/cyclo her ANC would drop down under 1000 every time. [To refresh your memory, normal ANC is over 2000. Under 500 is considered neutropenic and requires her to stay home from school, etc. ] With the etoposide, she didn't have the benefit of neulasta (that's akin to saying she doesn't have the benefit of being beaten with a stick), and she has bone marrow that has faced down almost a year of toxic chemo.
So what did we get frrom the blood count fairy?
White Blood Count--4100 (normal, even for a regular person)
Absolute Neutrophil Count--2600 (normal, even for a regular person)
Hemoglobin--10.0 (virtually the same as last week, a little anemic, but pretty solid for Erin--Can you say "More Steak?")
Platelets--294,000 (right smack in the middle of normal, for a regular person)
That means she's cleared for action: OPAS, Jr. tonight, performing with the children's choir on Sunday, AND the start of soccer season next week!
Friday, January 27, 2006
Sunday, January 22, 2006
Owl Girl, Sans Feathers
01/22/06
We now have a week of oral etoposide under our belt (behind Erin's belt?). So far, so good. She has not needed zofran (high dollar anti-barfie medicine). Her blood counts on Thursday held their own. No strange allergic reactions.
Those of you who see her regularly may remember that Erin had sprouted a little fuzz towards the end of last fall that she had kept over a couple of cycles of IV chemo. I thought those proto-locks had put down a beachhead, and that the switch to oral medicine would allow a quick fill in, and voila, hair. Oh well, so much for bright ideas. Hair loss always lags three or four weeks behind chemo. It seems that the last round of topless cyclone blew the top off of Erin's budding hair. Oh well, back to square one. Now we will really be able to see how well her hair does with the new regimen.
Those of you who take the local paper (you know the one whose motto is "don't try to train a puppy using the Monday or Tuesday edition") may have seen the story about Erin's art work "Owl Girl" in last Thursday's Spotlight. I think the rest of you can see it (without the photo) if you visit
http://www.theeagle.com. We really appreciate the volunteers that make programs like this possible and also send special thanks to the Children's Museum of the Brazos Valley for sponsoring the traveling exhibit and to Greg Okuhara and The Eagle for covering the story so well.
Well, I'm going to fly now. Davie B.'s show is still on, and you know my generation. We're not the best at multitasking.
We now have a week of oral etoposide under our belt (behind Erin's belt?). So far, so good. She has not needed zofran (high dollar anti-barfie medicine). Her blood counts on Thursday held their own. No strange allergic reactions.
Those of you who see her regularly may remember that Erin had sprouted a little fuzz towards the end of last fall that she had kept over a couple of cycles of IV chemo. I thought those proto-locks had put down a beachhead, and that the switch to oral medicine would allow a quick fill in, and voila, hair. Oh well, so much for bright ideas. Hair loss always lags three or four weeks behind chemo. It seems that the last round of topless cyclone blew the top off of Erin's budding hair. Oh well, back to square one. Now we will really be able to see how well her hair does with the new regimen.
Those of you who take the local paper (you know the one whose motto is "don't try to train a puppy using the Monday or Tuesday edition") may have seen the story about Erin's art work "Owl Girl" in last Thursday's Spotlight. I think the rest of you can see it (without the photo) if you visit
http://www.theeagle.com. We really appreciate the volunteers that make programs like this possible and also send special thanks to the Children's Museum of the Brazos Valley for sponsoring the traveling exhibit and to Greg Okuhara and The Eagle for covering the story so well.
Well, I'm going to fly now. Davie B.'s show is still on, and you know my generation. We're not the best at multitasking.
Wednesday, January 18, 2006
Life Without St. John's Wort
01/18/06
Unremarkable. A perfect word to describe Erin's first two and a half days of the new chemo regimen. In the pediatric cancer world, unremarkable is practically a perfect word. It means nothing worth mentioning (particularly, nothing bad) is going on. So, let me mention it again. Unremarkable. I only hope that any viable tumor cells are remarking to each other, "Oh my, I think I'm dying."
We have a slightly new routine to accommodate this drug. Someone has to wake Erin up around 6:00 (so her stomach is empty) to give her the gelcap. This must be done gently to increase the chance that she goes back to sleep for another hour (so far, so good on that one). We have also had to strike grapefruit and grapefruit juice off the morning menu (a loss, but one we can live with). Apparently, St. John's Wort is also a no no, but since I don't even know what St. John's Wort is, it should be easy to avoid, unless it is commonly slipped in to more palatable-sounding things like cheesecake or ice cream. That's it. No other changes.
Today, Erin will double dip on after school activities--horse back riding and children's choir. We are so glad she can do the things she loves. Everyone deserves that chance.
Davis's soccer team roared to the championship of the tournament they played in last weekend, winning 5-1, 5-1, and 4-0 in bracket play. The final was more of a challenge. The Vikings played a well-matched team in a tight game. They were down 1-0 for a good part of the game. About halfway through the second half, Davis got the assist by serving up a long (and accurate) pass to his forward who put it away to tie the game. The game remained that way to the final whistle and the Vikings clinched the win in the shootout.
Last night they made the long drive to Lufkin, where they squeaked out a tie. If that's not enough soccer for them, they have games scheduled Thursday, Friday, and Saturday over in Brenham at the Diadora Cup. All I can say, is that I'm glad Davis is a good student , or I doubt he could balance it all.
Unremarkable. A perfect word to describe Erin's first two and a half days of the new chemo regimen. In the pediatric cancer world, unremarkable is practically a perfect word. It means nothing worth mentioning (particularly, nothing bad) is going on. So, let me mention it again. Unremarkable. I only hope that any viable tumor cells are remarking to each other, "Oh my, I think I'm dying."
We have a slightly new routine to accommodate this drug. Someone has to wake Erin up around 6:00 (so her stomach is empty) to give her the gelcap. This must be done gently to increase the chance that she goes back to sleep for another hour (so far, so good on that one). We have also had to strike grapefruit and grapefruit juice off the morning menu (a loss, but one we can live with). Apparently, St. John's Wort is also a no no, but since I don't even know what St. John's Wort is, it should be easy to avoid, unless it is commonly slipped in to more palatable-sounding things like cheesecake or ice cream. That's it. No other changes.
Today, Erin will double dip on after school activities--horse back riding and children's choir. We are so glad she can do the things she loves. Everyone deserves that chance.
Davis's soccer team roared to the championship of the tournament they played in last weekend, winning 5-1, 5-1, and 4-0 in bracket play. The final was more of a challenge. The Vikings played a well-matched team in a tight game. They were down 1-0 for a good part of the game. About halfway through the second half, Davis got the assist by serving up a long (and accurate) pass to his forward who put it away to tie the game. The game remained that way to the final whistle and the Vikings clinched the win in the shootout.
Last night they made the long drive to Lufkin, where they squeaked out a tie. If that's not enough soccer for them, they have games scheduled Thursday, Friday, and Saturday over in Brenham at the Diadora Cup. All I can say, is that I'm glad Davis is a good student , or I doubt he could balance it all.
Friday, January 13, 2006
FAQ
01/13/06
Erin FAQ (frequently asked questions)
Do stable scans mean Erin does or doesn't have cancer?
Yes.
Give me a real answer.
Erin would probably still have cancer even if it didn't show up at all on scans. CT scans don't work very well on things that are smaller than a centimeter and the MiBG scans that might pick up smaller NB is not working on Erin's current tumor configuration. That means that even if nothing showed up we would still suspect that she had NB lurking.
You didn't answer my question. I know she is not NED. Why would a scan show the same sized tumor for seven months in a row, if she was having chemo all that time? Wouldn't it either shrink because the chemo was working or grow because it wasn't?
Unless we remove the pieces and biopsy them, we don't really know what's going on. The scan could be picking up lymph nodes with scar tissue on them or some sort of stroma (extra background tissue) around them. The tumor cells also could have matured into something benign, like ganglioneuroma. We might also be dealing with NB that is viable, just not currently dividing ("Ain't Misbehavin").
Would a tumor really do that?
Unfortunately, yes.
Since you don't know, will she keep having chemo forever?
Another toughy, but for now, we will assume that she'll have chemo for long enough that it will seem like it is forever. BUT (now here is the reward for those of you who have made it this far) it doesn't always have to be topotecan/cyclophosphomide. Starting on Monday (that's right, next week) Erin is switching to a new chemo drug, oral etoposide.
Did you say oral?
Yep.
Does that mean through her mouth, not her port?
Yep.
Does that mean no clinic next week?
Yep.
Does that mean I need to cancel my reservation to stop by for a visit.
I've taken care of that already.
Did the doctor switch her to this because the other wasn't working anymore?
Hard to say. The tumor wasn't growing while she was on it, but lately it wasn't shrinking either. If those tumor cells are still viable, it may have been holding them in check (like pinning an opponent's bishop in chess--it's still on the board, but not longer in the game), but if viable tumor cells remain, they are probably chemo resistant to that particular combo.
If topo/cyclo is holding everything in check, isn't changing chemo risky?
Everything about having cancer is risky. At this point, we are hoping that the new agent will mop up any remaining viable cells in the tumor and any remaining lurkers or at least keep the bishop pinned. We also hope that Erin will tolerate it as well as she has the other stuff.
What do you think. . .will she tolerate it as well?
That's what I'm hoping. At a minimum it keeps her in school everyday and avoids the long days at clinic. It also should be less suppressive to her blood counts. She won't have to take neulasta shots to build up her white count, a big bonus. She may even grow hair. She could also have mouth sores, nausea, and perhaps some liver concerns. We'll just have to see how her body reacts.
When does she start?
Monday, if the pharmacy gets the order in by then.
How many pills? How often? For how long?
One each day for 21 days in a row, then 7 free days, then start over.
Bottom line it for me. Is this good news or bad?
I'll get back to you in a month or two. If it works, it's the best news we've had since last March. If it doesn't, then we'll move on to something else.
What's the score on Davis's soccer game?
5-1, Bryan wins!
Erin FAQ (frequently asked questions)
Do stable scans mean Erin does or doesn't have cancer?
Yes.
Give me a real answer.
Erin would probably still have cancer even if it didn't show up at all on scans. CT scans don't work very well on things that are smaller than a centimeter and the MiBG scans that might pick up smaller NB is not working on Erin's current tumor configuration. That means that even if nothing showed up we would still suspect that she had NB lurking.
You didn't answer my question. I know she is not NED. Why would a scan show the same sized tumor for seven months in a row, if she was having chemo all that time? Wouldn't it either shrink because the chemo was working or grow because it wasn't?
Unless we remove the pieces and biopsy them, we don't really know what's going on. The scan could be picking up lymph nodes with scar tissue on them or some sort of stroma (extra background tissue) around them. The tumor cells also could have matured into something benign, like ganglioneuroma. We might also be dealing with NB that is viable, just not currently dividing ("Ain't Misbehavin").
Would a tumor really do that?
Unfortunately, yes.
Since you don't know, will she keep having chemo forever?
Another toughy, but for now, we will assume that she'll have chemo for long enough that it will seem like it is forever. BUT (now here is the reward for those of you who have made it this far) it doesn't always have to be topotecan/cyclophosphomide. Starting on Monday (that's right, next week) Erin is switching to a new chemo drug, oral etoposide.
Did you say oral?
Yep.
Does that mean through her mouth, not her port?
Yep.
Does that mean no clinic next week?
Yep.
Does that mean I need to cancel my reservation to stop by for a visit.
I've taken care of that already.
Did the doctor switch her to this because the other wasn't working anymore?
Hard to say. The tumor wasn't growing while she was on it, but lately it wasn't shrinking either. If those tumor cells are still viable, it may have been holding them in check (like pinning an opponent's bishop in chess--it's still on the board, but not longer in the game), but if viable tumor cells remain, they are probably chemo resistant to that particular combo.
If topo/cyclo is holding everything in check, isn't changing chemo risky?
Everything about having cancer is risky. At this point, we are hoping that the new agent will mop up any remaining viable cells in the tumor and any remaining lurkers or at least keep the bishop pinned. We also hope that Erin will tolerate it as well as she has the other stuff.
What do you think. . .will she tolerate it as well?
That's what I'm hoping. At a minimum it keeps her in school everyday and avoids the long days at clinic. It also should be less suppressive to her blood counts. She won't have to take neulasta shots to build up her white count, a big bonus. She may even grow hair. She could also have mouth sores, nausea, and perhaps some liver concerns. We'll just have to see how her body reacts.
When does she start?
Monday, if the pharmacy gets the order in by then.
How many pills? How often? For how long?
One each day for 21 days in a row, then 7 free days, then start over.
Bottom line it for me. Is this good news or bad?
I'll get back to you in a month or two. If it works, it's the best news we've had since last March. If it doesn't, then we'll move on to something else.
What's the score on Davis's soccer game?
5-1, Bryan wins!
Wednesday, January 11, 2006
Owl Girl
01/11/06
I haven't heard much on Monday's scans, but I'll take what we've got:
E-mail from Heidi Russell--Erin's bone scan is good. Her CT scan hasn't been read yet, but I don't see any obvious change or new tumors.
We head back to Houston tomorrow afternoon for blood counts and a physical. The doc has to see Erin face-to-face before she can write orders for the next round of chemo. I should know more then about whether she thinks this combo's usefulness is playing out and possibly what will happen next. For now, we are satisfied that Erin feels well and looks good, and that this damned disease is not ruining our lives.
It looks like Erin might get another extension on her 15 minutes of fame clock. You may or may not have heard of Texas Children's Hospital's Arts in Medicine program. Every year The Periwinkle Foundation selects art and creative writing done by pediatric cancer patients from around the world and display them prominently in the hospital. Erin's "Owl Girl", created late last summer with the hope that Davis would be going to school next year right by "her" hospital, was selected as one of the Blue Ribbon pieces. Much to our surprise a subset of the exhibit is traveling around the state, and its current stop is here at the Brazos Valley Children's Museum. For those of you with dial up, it may be quicker to drive downtown and see "Owl Girl" in person.
The Vikings played their second scrimmage yesterday with Davis starting and playing every minute of the game at stopper, or the position that Erin and her friends call raptor. They seemed to have gotten over the problems they had with the off-side trap last Friday night, scoring 4 with a hat trick by Javie to Huntsville's 2. Davis has had nagging lower back issues which don't bother him as long as he stays warm and stretched out (not usually a problem during the game with 80 consecutive minutes of high-intensity soccer). After the game he was pretty creakity and had to comandeer Walter's chair (you know. . .the manly green leather recliner with built in back-massage). No greater love hath a man than to allow his son the primo spot in the house.
I am taking reservations now for drop by visits at the Central Texas Cancer Center next week. Hope to see you then.
I haven't heard much on Monday's scans, but I'll take what we've got:
E-mail from Heidi Russell--Erin's bone scan is good. Her CT scan hasn't been read yet, but I don't see any obvious change or new tumors.
We head back to Houston tomorrow afternoon for blood counts and a physical. The doc has to see Erin face-to-face before she can write orders for the next round of chemo. I should know more then about whether she thinks this combo's usefulness is playing out and possibly what will happen next. For now, we are satisfied that Erin feels well and looks good, and that this damned disease is not ruining our lives.
It looks like Erin might get another extension on her 15 minutes of fame clock. You may or may not have heard of Texas Children's Hospital's Arts in Medicine program. Every year The Periwinkle Foundation selects art and creative writing done by pediatric cancer patients from around the world and display them prominently in the hospital. Erin's "Owl Girl", created late last summer with the hope that Davis would be going to school next year right by "her" hospital, was selected as one of the Blue Ribbon pieces. Much to our surprise a subset of the exhibit is traveling around the state, and its current stop is here at the Brazos Valley Children's Museum. For those of you with dial up, it may be quicker to drive downtown and see "Owl Girl" in person.
The Vikings played their second scrimmage yesterday with Davis starting and playing every minute of the game at stopper, or the position that Erin and her friends call raptor. They seemed to have gotten over the problems they had with the off-side trap last Friday night, scoring 4 with a hat trick by Javie to Huntsville's 2. Davis has had nagging lower back issues which don't bother him as long as he stays warm and stretched out (not usually a problem during the game with 80 consecutive minutes of high-intensity soccer). After the game he was pretty creakity and had to comandeer Walter's chair (you know. . .the manly green leather recliner with built in back-massage). No greater love hath a man than to allow his son the primo spot in the house.
I am taking reservations now for drop by visits at the Central Texas Cancer Center next week. Hope to see you then.
Sunday, January 8, 2006
*&%^% Machine
01/08/06
I hope I am not contagious. I have picked up a cruel, cruel virus that slows my CPU down to glacier speed. Imagine. . .my typing is faster than my computer's ability to display text. That's sloooow. It also explains the paucity of updates. I don't have the patience to wait for my computer to boot up, much less to hang fire while it decides whether or not it is going to let me load programs. I could go up to the office (and would have if there had been anything urgent to report), but the gorgeous winter weather has kept me in the garden and about the lake rather than at the office. Back to the grind next week.
In the meantime, you suffer: no updates, no prayer instructions, no sly stories--just that same old post-Christmas chestnut about burning down the sanctuary. Well, don't expect much from this. Erin and Davis had a splendid vacation with lots of friends and fun. They returned to school with very little complaint. Erin's white counts were low when they were supposed to be and bounced back as expected. Tomorrow we will check on the hemoglobin and platelets and make sure they complied with my message to return to normal. Erin will also take the opportunity to lay about (inside and underneath scanning machines).
We are (again) hoping for all clear, improved, or stable. There hasn't really been anything going on with Erin medically that would foreshadow anything else. Of course, I will let you know as soon as I find out something. As long as we don't get answer "D" ("things look worse"), we will have chemo again (Relapse Round 10) here in Bryan next week. Her appointments (see, I am an optimist and scheduled as if I already knew the outcome) are Monday through Friday (1/16-1/20) afternoon, starting at about 1:00 and continuing through about 5:00 or 5:30. I really hope that that is what happens.
Davis's high school soccer season started last Friday, so get ready to hear about them regularly. They will play at least twice a week from now until April, longer if they push into the playoffs. He looked really good and fit, even after the two week lay off.
This brief update is all I have the patience for with this machine. Check again later in the week. Maybe by then I will be driving a new machine.
I hope I am not contagious. I have picked up a cruel, cruel virus that slows my CPU down to glacier speed. Imagine. . .my typing is faster than my computer's ability to display text. That's sloooow. It also explains the paucity of updates. I don't have the patience to wait for my computer to boot up, much less to hang fire while it decides whether or not it is going to let me load programs. I could go up to the office (and would have if there had been anything urgent to report), but the gorgeous winter weather has kept me in the garden and about the lake rather than at the office. Back to the grind next week.
In the meantime, you suffer: no updates, no prayer instructions, no sly stories--just that same old post-Christmas chestnut about burning down the sanctuary. Well, don't expect much from this. Erin and Davis had a splendid vacation with lots of friends and fun. They returned to school with very little complaint. Erin's white counts were low when they were supposed to be and bounced back as expected. Tomorrow we will check on the hemoglobin and platelets and make sure they complied with my message to return to normal. Erin will also take the opportunity to lay about (inside and underneath scanning machines).
We are (again) hoping for all clear, improved, or stable. There hasn't really been anything going on with Erin medically that would foreshadow anything else. Of course, I will let you know as soon as I find out something. As long as we don't get answer "D" ("things look worse"), we will have chemo again (Relapse Round 10) here in Bryan next week. Her appointments (see, I am an optimist and scheduled as if I already knew the outcome) are Monday through Friday (1/16-1/20) afternoon, starting at about 1:00 and continuing through about 5:00 or 5:30. I really hope that that is what happens.
Davis's high school soccer season started last Friday, so get ready to hear about them regularly. They will play at least twice a week from now until April, longer if they push into the playoffs. He looked really good and fit, even after the two week lay off.
This brief update is all I have the patience for with this machine. Check again later in the week. Maybe by then I will be driving a new machine.
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