March 18, 2009
When you've had a run of bad days in a row, you can easily fall into a pity party. That's why it's great to have friends with perspective. I wish I could give proper credit to the websites where I recently had learning experiences, but I can't track down either entry in the blogs I read that started my thought process on the topic of "how to react to bad days."
Anyway, one was from the mother of a child who died from neuroblastoma, venting about something she had read on a different blog. Apparently a mom was complaining about getting stuck in-patient with her child who had a phantom fever, low counts, but no other apparent problem. This "stuck" mom was bemoaning the fact that they were wasting time in the hospital when they could be out doing more interesting things (I think I have been guilty of those feelings from time to time, whether I expressed them on Erin's Home Page or not). The wise NB mom venting basically made the point that the "stuck" parent should slow down and appreciate the time she could spend with her child and use the time together when everyone felt relatively well to play and share and enjoy each other.
Another website I read didn't have an elaborate story, but just made the point that once a day was gone you could never have it back. Some of us feel glad to bid bad days good riddance and think we would never want them back. On the other hand, a bad day seems infinitely better than the promise that you will never have any part of that day back and may never have another to replace it with.
These two thoughts have really kept me on track the last few weeks. Instead of alternating between boredom, depression, and insanity stuck in the house with Erin, I've tried to reframe the experience (my more humble self must admit that I'm not always successful). Anyway, the last two days have been a sweeter elixir for my efforts. Erin is making headway. Believe me, it's slow headway and I have to practice patience (repeatedly). She's frail, weak, and still full of sputum. Her ribs show, her arms are sticks. She still can't leave the house and go very far under her own locomotion. But she's better. We went to Jackson's house yesterday and hung our feet in the hot tub for a while. We sat outside in the best part of the evening contemplating the extraordinary number of birds collecting around our yard to tell us about the arrival of spring. We chuckled our way through The Rachel Maddow Show. She called me over at one point and told me, "I need help. My nose is running again." I brought her a box of tissues, thinking I had solved the problem, but she pointed and said, "Look I think I see it over there, heading down the hall."
The state would arrest me if I had deliberately doled out the tiny amount of food she has eaten over the last two weeks rather than her rejecting the many and various things I have offered. Yesterday, however, her intake volume doubled or tripled (still not enough calories to sustain even the smallest kitten, but definitely an improvement). Bites of honey glazed walnut shrimp, avacado, tater tot, egg drop soup, chocolate cake, and crispie noodles. Today we're going to try a day trip over to Washington-on-the-Brazos and the Barrington Living Farm, a poor substitute for the mountains of New Mexico and spring break skiing, but better than bed.
These tiny steps in the right direction almost take me out of the rhythm I had developed facing up to the chain of bad days. If I know myself, I will want improvements to come faster and faster. I will make grander plans and push to move past the bad back into the good. My friends need to remind me that patience is a virtue and to take things how they come. Thank goodness for friends.
Wednesday, March 18, 2009
Monday, March 16, 2009
Still Got It
March 16, 2009
Erin's still got it, in more ways than one. We had a very slow weekend, with Erin staying in bed a lot. We watched a few movies (thanks for the recommendations. . .we are always up to hear what other people like) and have churned through page after page of the book we are on. In many ways, this has been reminiscent of transplant: Erin feeling unwell and nothing but patience to get us through until her counts recover and her various ailments resolve.
Unlike usual, she hasn't had much to say, letting us know what she wants or needs with just a word or two. Last night, as I sat next to her, keeping her feet warm and reading aloud, in sequence she asked for "tissue," "ice water," and "carmex." No "please," no "thank you," not even a name attached to know who she was directing. Walter, of course, brought each item in turn. The third time he jumped up to fetch something, I said, "Erin, you little general, where are your armies?" She turned towards me, deadpan look on her face, and said "In my sleevies. Where do you keep yours?"
This morning, we enacted a similar tableau. This time my mom sat next to her, keeping her feet warm and working a crossword puzzle with her. I walked by and noticed a pile of spent tissues sitting next to her. While I don't relish handling sputum-filled tissue (sputum is a new word I learned in the hospital last week. There are new brochures displayed at every turn explaining to patients and visitors how to deal with sputum--spit and snot--safely), I do it because Teddy will roll around on them and spread the joy of sputum if I don't. Anyway, I gathered them up and asked Erin if I "could file these important papers." She said, "of course." Then as I walked away, she added, "but only if you don't get them out of order or in the wrong folder." I'm sure I heard a rim shot after she spoke.
Anyway, for the first day in a long time, I feel like Erin feels better this morning than she did the day before. She still has whatever she had (illnesswise), but I think she has less of it. She also seems to be experiencing climbing counts (though that's a guess, rather than a scientific conclusion). As for a sense of humor and comedic timing: she definitely still got it.
Erin's still got it, in more ways than one. We had a very slow weekend, with Erin staying in bed a lot. We watched a few movies (thanks for the recommendations. . .we are always up to hear what other people like) and have churned through page after page of the book we are on. In many ways, this has been reminiscent of transplant: Erin feeling unwell and nothing but patience to get us through until her counts recover and her various ailments resolve.
Unlike usual, she hasn't had much to say, letting us know what she wants or needs with just a word or two. Last night, as I sat next to her, keeping her feet warm and reading aloud, in sequence she asked for "tissue," "ice water," and "carmex." No "please," no "thank you," not even a name attached to know who she was directing. Walter, of course, brought each item in turn. The third time he jumped up to fetch something, I said, "Erin, you little general, where are your armies?" She turned towards me, deadpan look on her face, and said "In my sleevies. Where do you keep yours?"
This morning, we enacted a similar tableau. This time my mom sat next to her, keeping her feet warm and working a crossword puzzle with her. I walked by and noticed a pile of spent tissues sitting next to her. While I don't relish handling sputum-filled tissue (sputum is a new word I learned in the hospital last week. There are new brochures displayed at every turn explaining to patients and visitors how to deal with sputum--spit and snot--safely), I do it because Teddy will roll around on them and spread the joy of sputum if I don't. Anyway, I gathered them up and asked Erin if I "could file these important papers." She said, "of course." Then as I walked away, she added, "but only if you don't get them out of order or in the wrong folder." I'm sure I heard a rim shot after she spoke.
Anyway, for the first day in a long time, I feel like Erin feels better this morning than she did the day before. She still has whatever she had (illnesswise), but I think she has less of it. She also seems to be experiencing climbing counts (though that's a guess, rather than a scientific conclusion). As for a sense of humor and comedic timing: she definitely still got it.
Saturday, March 14, 2009
Keeping Score?
March 14, 2009
Keeping score?
10.3/130 to 0
Translation:
Hemoglobin-10.3 and Platelets-130K (Yeah for the high, almost normal scores and thank you to blood donors everywhere!)
ANC-0 (Boo for the low score)
It looks like chemo, radiation, and virus have done their dirty work, and we will be avoiding infection-causing scenarios for a few days. This delays our spring break plans and scrubs the trip to Ruidoso. We will scramble to make a Plan B, probably somewhere in or around the Hill Country.
No time for more. I am reading to Erin (The Amber Spyglass) which is more important than futsing around on the computer.
Keeping score?
10.3/130 to 0
Translation:
Hemoglobin-10.3 and Platelets-130K (Yeah for the high, almost normal scores and thank you to blood donors everywhere!)
ANC-0 (Boo for the low score)
It looks like chemo, radiation, and virus have done their dirty work, and we will be avoiding infection-causing scenarios for a few days. This delays our spring break plans and scrubs the trip to Ruidoso. We will scramble to make a Plan B, probably somewhere in or around the Hill Country.
No time for more. I am reading to Erin (The Amber Spyglass) which is more important than futsing around on the computer.
Thursday, March 12, 2009
Transfusions All Around
March 12, 2009
Riffing on the title of my last post, we now know that we have about eight hours of transfusions in our immediate future. Immuno-compromised folks have special blood needs, so Erin's new blood will have to be irradiated and leukocyte-depleted before she can claim it. Because of that, it also has to travel from another city before it can jump inside her body. Well, jump isn't accurate. Because of her pleural effusion, the docs want a slow transfusion to make sure her fluids don't back up. Translation: the lab has crossed, typed, and ordered her blood. The hospital has a room standing by (St. Joseph's 396). When the blood arrives (my guess is 6:00 p.m.) we will go and get the packed red blood cells. I'm guessing some time only slightly before midnight, they will send us home with instructions to come back tomorrow for at least another four or five hours for the platelets.
What is the funniest movie available on DVD that we can rent this afternoon or tomorrow morning to keep Erin entertained? It doesn't have to be the latest, newest movie. . .just funny and commercially available. . .and not rated R.
In other breaking news, we rang the metaphorical bell on radiation this afternoon and are glad to take that off the daily agenda.
Riffing on the title of my last post, we now know that we have about eight hours of transfusions in our immediate future. Immuno-compromised folks have special blood needs, so Erin's new blood will have to be irradiated and leukocyte-depleted before she can claim it. Because of that, it also has to travel from another city before it can jump inside her body. Well, jump isn't accurate. Because of her pleural effusion, the docs want a slow transfusion to make sure her fluids don't back up. Translation: the lab has crossed, typed, and ordered her blood. The hospital has a room standing by (St. Joseph's 396). When the blood arrives (my guess is 6:00 p.m.) we will go and get the packed red blood cells. I'm guessing some time only slightly before midnight, they will send us home with instructions to come back tomorrow for at least another four or five hours for the platelets.
What is the funniest movie available on DVD that we can rent this afternoon or tomorrow morning to keep Erin entertained? It doesn't have to be the latest, newest movie. . .just funny and commercially available. . .and not rated R.
In other breaking news, we rang the metaphorical bell on radiation this afternoon and are glad to take that off the daily agenda.
Wednesday, March 11, 2009
Apologies All Around
March 11, 2009
I don't ordinarily complain a lot, mainly because it does no good and it's annoying. That's said, here is a one sentence complaint: I don't think it's fair that a respiratory virus with extreme prejudice--fatigue, appetite suppression, and diarrhea, as well as a super abundance of snot and coughing--has chosen Erin as its current repository.
Over the weekend, when this developed, we just blamed everything on seasonal allergies (everyone else in the Brazos Valley has a runny nose and cough, so why shouldn't Erin have her share?). This means that now we owe dozens of people apologies for exposing them to something that is probably contagious.
For instance, if Aunt Jan doesn't come down with it having gone cheek to cheek with Erin for this staged photo, I'll really be surprised:
A wider net of apology goes to the thirty or more kids (and their parents) who gathered at the church on Sunday evening. The youth group sponsored a game night for Erin and the Older Elementary Fellowship, just to cheer her up. I put a slideshow of some of the activities (Wii, Rock Band, Apple-to-Apples, Pictionary, basketball, pizza, ice cream, etc.) on the sidebar to the left (for those of you, like me, who struggle to see small things, you can click on the image to make the photos larger).
Walter and I took advantage and snuck out with friends to the Brauhaus for a bite. Erin had a great time, despite feeling yucky, and we really appreciate how the older kids made the evening so special. They are a great group and I'm proud to know them.
Because of her virus, Erin hasn't made it back to school this week. We did have a nice stop by by some of her buddies (Jackson, Noah, and Colton) after school yesterday. She was not that engaged, but they were all cheerful and full of energy so it was fun for me at least. I guess I needed a break from that mom-service role. You know, "Mom, I need to blow my nose," "Mom, I'm thirsty," "Mom, I'm bored. Read to me."
On top of the virus, Erin counts are headed towards the ditch (radiation plus chemo)
HGB 8.5 (look for a transfusion later in the week)
WBC 1100 (very lowl)
ANC 900 (school would be iffy even if she felt better)
PLT 16,000 (once again, no sharp knive or throwing rocks at her)
This morning, Erin woke up with a screaming headache (hemoglobin?). Despite that, we made it to the next to last radiation session. She feels better now and is trying to teach Moo (my mother) gaming on the Wii. We also think she is edging in the right direction on throwing off the virus. Yesterday, she became interested in food again She nibbled lightly on a variety of things, most notably chips and queso and an avacado taco from Gina's. Once her appetite returns, I will start packing the calories on.
I don't ordinarily complain a lot, mainly because it does no good and it's annoying. That's said, here is a one sentence complaint: I don't think it's fair that a respiratory virus with extreme prejudice--fatigue, appetite suppression, and diarrhea, as well as a super abundance of snot and coughing--has chosen Erin as its current repository.
Over the weekend, when this developed, we just blamed everything on seasonal allergies (everyone else in the Brazos Valley has a runny nose and cough, so why shouldn't Erin have her share?). This means that now we owe dozens of people apologies for exposing them to something that is probably contagious.
For instance, if Aunt Jan doesn't come down with it having gone cheek to cheek with Erin for this staged photo, I'll really be surprised:
A wider net of apology goes to the thirty or more kids (and their parents) who gathered at the church on Sunday evening. The youth group sponsored a game night for Erin and the Older Elementary Fellowship, just to cheer her up. I put a slideshow of some of the activities (Wii, Rock Band, Apple-to-Apples, Pictionary, basketball, pizza, ice cream, etc.) on the sidebar to the left (for those of you, like me, who struggle to see small things, you can click on the image to make the photos larger).Walter and I took advantage and snuck out with friends to the Brauhaus for a bite. Erin had a great time, despite feeling yucky, and we really appreciate how the older kids made the evening so special. They are a great group and I'm proud to know them.
Because of her virus, Erin hasn't made it back to school this week. We did have a nice stop by by some of her buddies (Jackson, Noah, and Colton) after school yesterday. She was not that engaged, but they were all cheerful and full of energy so it was fun for me at least. I guess I needed a break from that mom-service role. You know, "Mom, I need to blow my nose," "Mom, I'm thirsty," "Mom, I'm bored. Read to me."
On top of the virus, Erin counts are headed towards the ditch (radiation plus chemo)
HGB 8.5 (look for a transfusion later in the week)
WBC 1100 (very lowl)
ANC 900 (school would be iffy even if she felt better)
PLT 16,000 (once again, no sharp knive or throwing rocks at her)
This morning, Erin woke up with a screaming headache (hemoglobin?). Despite that, we made it to the next to last radiation session. She feels better now and is trying to teach Moo (my mother) gaming on the Wii. We also think she is edging in the right direction on throwing off the virus. Yesterday, she became interested in food again She nibbled lightly on a variety of things, most notably chips and queso and an avacado taco from Gina's. Once her appetite returns, I will start packing the calories on.
Sunday, March 8, 2009
Lanyards
March 8, 2009
Someone posted this in the comments:
For those of us not familiar with, but intrigued by... what exactly is a lanyard used for? (How much do you want for them? Just curious on the background...)
Lanyards are long necklaces with rings or clips on the end to hang ID badges on. School teachers, nuclear scientists, and hospital personnel are types of folks that sometimes wear lanyards as part of their jobs. Our friends the Weberlings introduced us to the concept of making them with jewelry wire and glass beads last fall. We started out just thinking of Erin's teachers and had intended to give them as Christmas gifts. Unfortunately, each one took longer than we thought, so we had to fall back on a different plan of teacher gifts. Erin finished making them over Christmas and thought she would give them to the teachers anyway. She paired that idea with idea that they might want to make a donation to the Children's Neuroblastoma Cancer Foundation in exchange for having a cool and beautiful lanyard. Since then, Erin's lanyards have become such a big hit that she sometimes needs help from friends to collaborate with her. Here are some samples:
She has taken orders from people and is filling them in the order they came in. Some people have ordered specific color combinations or lengths; others are leaving those choices to her. When your order is ready, we either give it or send it to you (if you asked for something more specific), or we contact you and let you pick from the accumulated inventory (if you didn't express a particular preference). We have also branched out a little for people who don't have to wear ID badges. We have made some eyeglasses chains (for people like me who need to take their glasses on and off all day and risk them escaping if they are not chained around my neck) and have taken some special orders for other type of jewelry.
We don't set a price on any of the items we make. Erin has given them away for nothing and has accept donations as large as $250. Anything she gets, we send to Lunch for Life and the Children's Neuroblastoma Cancer Foundation.
There's a more important story embedded here. Erin's beaded lanyards help people by providing harnasses for their IDs. They also help people by generating funds for pediatric cancer research. Beyond these instrumental outcomes, there are some other benefits. Beading gives Erin something to do when she doesn't feel like doing much. It gives her friends something to do with her when she can't run around and play like they can. It brings our friends together and helps us make new friends. We share time, space, and conversation as we work. Wearing a lanyard by Erin might prompt someone to notice and gives the wearer a chance to spread the word. I like to think of the whole cycle (where a large number of people end up feeling better) as process theology.
Take these two photos. Erin had Sandy, Tiffany, and Kaleigh over on Saturday afternoon to do a little beading. Erin had looked terrible all day. [We think she has a combination of stomach virus--diarrhea, nausea, headache, and fatigue--and sinus infection--lots of snot, sore throat, difficulty swallowing, and productive cough. Although we never know whether there might be more insidious explanations.] Beading with friends perked her up.
Someone posted this in the comments:
For those of us not familiar with, but intrigued by... what exactly is a lanyard used for? (How much do you want for them? Just curious on the background...)
Lanyards are long necklaces with rings or clips on the end to hang ID badges on. School teachers, nuclear scientists, and hospital personnel are types of folks that sometimes wear lanyards as part of their jobs. Our friends the Weberlings introduced us to the concept of making them with jewelry wire and glass beads last fall. We started out just thinking of Erin's teachers and had intended to give them as Christmas gifts. Unfortunately, each one took longer than we thought, so we had to fall back on a different plan of teacher gifts. Erin finished making them over Christmas and thought she would give them to the teachers anyway. She paired that idea with idea that they might want to make a donation to the Children's Neuroblastoma Cancer Foundation in exchange for having a cool and beautiful lanyard. Since then, Erin's lanyards have become such a big hit that she sometimes needs help from friends to collaborate with her. Here are some samples:
She has taken orders from people and is filling them in the order they came in. Some people have ordered specific color combinations or lengths; others are leaving those choices to her. When your order is ready, we either give it or send it to you (if you asked for something more specific), or we contact you and let you pick from the accumulated inventory (if you didn't express a particular preference). We have also branched out a little for people who don't have to wear ID badges. We have made some eyeglasses chains (for people like me who need to take their glasses on and off all day and risk them escaping if they are not chained around my neck) and have taken some special orders for other type of jewelry.
We don't set a price on any of the items we make. Erin has given them away for nothing and has accept donations as large as $250. Anything she gets, we send to Lunch for Life and the Children's Neuroblastoma Cancer Foundation.
There's a more important story embedded here. Erin's beaded lanyards help people by providing harnasses for their IDs. They also help people by generating funds for pediatric cancer research. Beyond these instrumental outcomes, there are some other benefits. Beading gives Erin something to do when she doesn't feel like doing much. It gives her friends something to do with her when she can't run around and play like they can. It brings our friends together and helps us make new friends. We share time, space, and conversation as we work. Wearing a lanyard by Erin might prompt someone to notice and gives the wearer a chance to spread the word. I like to think of the whole cycle (where a large number of people end up feeling better) as process theology.
Take these two photos. Erin had Sandy, Tiffany, and Kaleigh over on Saturday afternoon to do a little beading. Erin had looked terrible all day. [We think she has a combination of stomach virus--diarrhea, nausea, headache, and fatigue--and sinus infection--lots of snot, sore throat, difficulty swallowing, and productive cough. Although we never know whether there might be more insidious explanations.] Beading with friends perked her up.
Thursday, March 5, 2009
What's in Your Pocket?
March 5, 2009
I'm not really a purse kind of girl. I have one. I usually leave it locked in my van. I prefer pockets.
Erin and I had a lot of running around to do yesterday. For the second day in a row, she went to school for half a day (more on that later). After school, she went to piano lessons. Then we picked up Walter from work to go to dinner and our classes (Spanish for me and Walter, fused glass jewelry making for Erin) at the church.
Part way through dinner I checked my pockets. Here's what I had:
I guess these things capture my day as well as anything. Actually, they capture a day with a cancer kid pretty well. Big things, little things, important things, trivial things, things we are grateful for, and things we wish we didn't have to carry. All parts of our lives.
On another note, radiation has gone smoothly. We saw the doctor today. He thought radiation was helping, so we will continue on with the plan for the course to last ten days. We're going to take tomorrow off and finish off with Monday through Wednesday sessions next week. The reason for an off day: the beautiful weather and increased mobility has lured Erin outside over the past few days and triggered a good amount of snot to form in her sinuses. A productive cough has replaced her tumor-induced one, and her red throat makes swallowing a bit tougher. We all figured giving her a three-day weekend would help all around.
Overall, Erin is sleeping a little better, moving a little better, breathing a little better. Still not enough stamina for a full day of activities. In fact, her burst of activities yesterday afternoon and evening translated into a very slow start this morning.
Keep letting me know if you have lanyard orders. We have a system set up (Walter has been very patient with our semi-permanent set up in the great room that takes up the entire drop leaf table and china hutch) and are beaving away at our back orders. Local folks are welcome to join us whenever they feel the urge for lively conversation and some handiwork.
I'm not really a purse kind of girl. I have one. I usually leave it locked in my van. I prefer pockets.
Erin and I had a lot of running around to do yesterday. For the second day in a row, she went to school for half a day (more on that later). After school, she went to piano lessons. Then we picked up Walter from work to go to dinner and our classes (Spanish for me and Walter, fused glass jewelry making for Erin) at the church.
Part way through dinner I checked my pockets. Here's what I had:
- keys and cell phone (both standard and always there).
- a tiny key on a corgi key chain that turns on the electric cart that our gracious next door neighbors lent Erin so she could navigate the hallways at Jane Long and get back to school faster.
- a very large amount of money in the form of a couple of checks that generous donors had given me over the course of the day for their lanyards.
- a bottle of morphine. Erin started taking a half tablet of morphine last week so that she could sleep comfortably at night in a reclining position. In Erin, morphine has a three hour lead time (that is, it takes three hours after she takes it before she feels the effects), therefore if she wants to go to bed at 9:00, I need to give it to her at 6:00.
- a Polly Pocket wearing a stylish green rubber suit. She belonged to my niece Emma, and I had grabbed her off the floor and stuffed her into my pocket as I left the house to keep Willie from. . .well, you know.
- the end cap to a heparin syringe I had flushed Erin's PICC line with that morning
- a crumpled receipt from Shakes where Erin and I stopped for ice cream treats between piano and picking up Walter
- a cute note from one of Erin's teachers saying what a fine student she was.
I guess these things capture my day as well as anything. Actually, they capture a day with a cancer kid pretty well. Big things, little things, important things, trivial things, things we are grateful for, and things we wish we didn't have to carry. All parts of our lives.
On another note, radiation has gone smoothly. We saw the doctor today. He thought radiation was helping, so we will continue on with the plan for the course to last ten days. We're going to take tomorrow off and finish off with Monday through Wednesday sessions next week. The reason for an off day: the beautiful weather and increased mobility has lured Erin outside over the past few days and triggered a good amount of snot to form in her sinuses. A productive cough has replaced her tumor-induced one, and her red throat makes swallowing a bit tougher. We all figured giving her a three-day weekend would help all around.
Overall, Erin is sleeping a little better, moving a little better, breathing a little better. Still not enough stamina for a full day of activities. In fact, her burst of activities yesterday afternoon and evening translated into a very slow start this morning.
Keep letting me know if you have lanyard orders. We have a system set up (Walter has been very patient with our semi-permanent set up in the great room that takes up the entire drop leaf table and china hutch) and are beaving away at our back orders. Local folks are welcome to join us whenever they feel the urge for lively conversation and some handiwork.
Monday, March 2, 2009
Excruciatingly Slow
March 2, 2009
Happy Texas Independence Day and Sam Houston's Birthday.
Erin kept it pretty quiet over the weekend. On Friday she went out for ice cream and to Jackson's house before they all ended back over here to catch the sunset and some adult beverages on the backporch. We also had a great visit from the entire Weberling clan on Sunday afternoon. Hans, who apparently doesn't put much stock in socializing was lured to our house by the promise of FOUR dogs and Lego Star Wars Wii. Willie has been sad since Hans, the biggest dog spoiler he has ever met, left.
I wish I could say Erin is bouncing and be-bopping around as agilely as her Mii, but no. She mainly stays in one place. I can't tell if she would really be out of breath if she got more active (she hasn't needed oxygen at all since last Wednesday or Thursday, except when she lies on the radiation table), or if she's just scared of getting out of breath if she moves around too much. We edged back on the pain medicine once again this morning (hurray! third time in the last week) and that worked pretty well. On the other hand, while she's not in much pain, she's not hugely comfortable either and never quite getting comfortable can really wear you down.
This morning we made some lanyard deliveries and were floored by the generosity of all of our friends. We considered an afternoon at school, but she just doesn't think she's up to it yet. Davis has helped her pass the time with various activities, and we are certainly blessed to have him home, even if it's just for a few days.
Happy Texas Independence Day and Sam Houston's Birthday.
Erin kept it pretty quiet over the weekend. On Friday she went out for ice cream and to Jackson's house before they all ended back over here to catch the sunset and some adult beverages on the backporch. We also had a great visit from the entire Weberling clan on Sunday afternoon. Hans, who apparently doesn't put much stock in socializing was lured to our house by the promise of FOUR dogs and Lego Star Wars Wii. Willie has been sad since Hans, the biggest dog spoiler he has ever met, left.
I wish I could say Erin is bouncing and be-bopping around as agilely as her Mii, but no. She mainly stays in one place. I can't tell if she would really be out of breath if she got more active (she hasn't needed oxygen at all since last Wednesday or Thursday, except when she lies on the radiation table), or if she's just scared of getting out of breath if she moves around too much. We edged back on the pain medicine once again this morning (hurray! third time in the last week) and that worked pretty well. On the other hand, while she's not in much pain, she's not hugely comfortable either and never quite getting comfortable can really wear you down.This morning we made some lanyard deliveries and were floored by the generosity of all of our friends. We considered an afternoon at school, but she just doesn't think she's up to it yet. Davis has helped her pass the time with various activities, and we are certainly blessed to have him home, even if it's just for a few days.
Friday, February 27, 2009
Progress
February, 27, 2009
I think I will take the weekend off from desk work (other than end-of-month bill paying, which, I suppose, I can't avoid), so I thought I should post an entry before I logged off. Erin has definitely made positive progress after three radiation session. Her breathing and coughing have improved, and we are easing back on the pain meds to see if she has also gotten better on that front as well. Less pain medication will translate into greater lucidity, which will improve her outlook immensely. She will have five more sessions next week, then we will re-evaluate and see what happens next.
We spent part of the afternoon sorting out lanyards and how to proceed (Our stock is up to a couple of dozen so we ought to be able to fill most standing orders soon). We have some made for folks who had particular parameters (colors, length, etc.). I will contact you directly, in person, by phone, or by e-mail, and let you know how we will handle the delivery. For those of you who didn't express particular preferences, we have taken photos with batches of lanyards. I will send the photos to you by e-mail (or if you have facebook, they are on my site, and I will friend you if you need me to). I am doing this sequentially in the order the lanyard requests came in, so different people don't claim the same on-spec lanyard. Once you have adopted a particular one, we'll make a plan for delivery.
I think I will take the weekend off from desk work (other than end-of-month bill paying, which, I suppose, I can't avoid), so I thought I should post an entry before I logged off. Erin has definitely made positive progress after three radiation session. Her breathing and coughing have improved, and we are easing back on the pain meds to see if she has also gotten better on that front as well. Less pain medication will translate into greater lucidity, which will improve her outlook immensely. She will have five more sessions next week, then we will re-evaluate and see what happens next.
We spent part of the afternoon sorting out lanyards and how to proceed (Our stock is up to a couple of dozen so we ought to be able to fill most standing orders soon). We have some made for folks who had particular parameters (colors, length, etc.). I will contact you directly, in person, by phone, or by e-mail, and let you know how we will handle the delivery. For those of you who didn't express particular preferences, we have taken photos with batches of lanyards. I will send the photos to you by e-mail (or if you have facebook, they are on my site, and I will friend you if you need me to). I am doing this sequentially in the order the lanyard requests came in, so different people don't claim the same on-spec lanyard. Once you have adopted a particular one, we'll make a plan for delivery.
Thursday, February 26, 2009
Exactly What President Obama Needs
February 26, 2009
This morning I realized the "Gold" no longer worked for Willie. Not even two months into our experiment, Willie has spurned roasted turkey cubes in favor of a good, long explore under the abandoned trailer down the road. I tried to lure him out by feeding Teddy hers and exclaiming what a good dog she was. I even gave out the gold to Willlie's weimaraner friend, Jade, who actually can't perform any gold-deserving tricks, just to get Willie's attention. Nope. Nothing doing. I may have started the morning walk with a lot on my mind (how do you decide how much narcotics to give your 11 year old so she can breathe during radiation without taking the edge off her Wii skills for the rest of the day), but Willie re-focused me on the important details: how could I outsmart a dog who wouldn't take the bait? Would I ever make it back home to my first cup of coffee? Why did I leave the security of my kitchen without my coffee in the first place?
I finally had to give up the pretense that Willie would ever come out from under the trailer on his own accord--just because he wanted to please me, just because he heard my melodious voice singing out "Willie come," just because I had morsels of delight waiting in my pocket to reward his obedience. I groped up under the trailer, dragged him out, and clamped the leashed on his collar. The look in his eyes said, "I love you," but also "Officer, what seems to be the problem?" He pranced home on the end of the leash, clearly not missing any chopped and smoked poultry pieces that may have been his right in other circumstances.
I settled in at the table to glance through the paper and enjoy my coffee while Willie went off to lie by the sliding glass door to monitor squirrel troop movements. I read that Barack and Michelle Obama had their eyes set on a rescued Portugese water dog to fulfill their promise to Sasha and Malia for a new pet in the White House. I laughed out loud. Actually I chortled. My first thought was, I'm glad they didn't select a Rhodesian ridgeback as their dog of choice. Then I remembered Scupper. Some of you who read this page might remember Spencer Dolling's Portugese water dog, Scupper (some of the best Scupper stories are on the back pages of Spencer's caringbridge site. Try searching for "Scupper" in that link to find stories of purloined fresh salmon, stinky smells, and mayhem) . Scupper may be the only dog in North America (he's Canadian) who made bigger messes and caused more problems than Willie. I swear both these dogs make Marley look like the model pet.
Soon, like me, President Obama will have something to take his mind off those petty concerns like failing banks, a stagnating economy, and an expensive and unpopular war. He will have a Portugese water dog.
Erin had her simulation and first radiation session yesterday, and we've already made it home from this morning's session. I can tell already that her breathing has improved and her cough has stabilized. By tomorrow, I hope her back pain will start resolving and that she will regain some energy. The steroid she is taking to reduce swelling in the area has ramped up her appetite, so I need to go and make some chili mac for the starving child.
This morning I realized the "Gold" no longer worked for Willie. Not even two months into our experiment, Willie has spurned roasted turkey cubes in favor of a good, long explore under the abandoned trailer down the road. I tried to lure him out by feeding Teddy hers and exclaiming what a good dog she was. I even gave out the gold to Willlie's weimaraner friend, Jade, who actually can't perform any gold-deserving tricks, just to get Willie's attention. Nope. Nothing doing. I may have started the morning walk with a lot on my mind (how do you decide how much narcotics to give your 11 year old so she can breathe during radiation without taking the edge off her Wii skills for the rest of the day), but Willie re-focused me on the important details: how could I outsmart a dog who wouldn't take the bait? Would I ever make it back home to my first cup of coffee? Why did I leave the security of my kitchen without my coffee in the first place?
I finally had to give up the pretense that Willie would ever come out from under the trailer on his own accord--just because he wanted to please me, just because he heard my melodious voice singing out "Willie come," just because I had morsels of delight waiting in my pocket to reward his obedience. I groped up under the trailer, dragged him out, and clamped the leashed on his collar. The look in his eyes said, "I love you," but also "Officer, what seems to be the problem?" He pranced home on the end of the leash, clearly not missing any chopped and smoked poultry pieces that may have been his right in other circumstances.
I settled in at the table to glance through the paper and enjoy my coffee while Willie went off to lie by the sliding glass door to monitor squirrel troop movements. I read that Barack and Michelle Obama had their eyes set on a rescued Portugese water dog to fulfill their promise to Sasha and Malia for a new pet in the White House. I laughed out loud. Actually I chortled. My first thought was, I'm glad they didn't select a Rhodesian ridgeback as their dog of choice. Then I remembered Scupper. Some of you who read this page might remember Spencer Dolling's Portugese water dog, Scupper (some of the best Scupper stories are on the back pages of Spencer's caringbridge site. Try searching for "Scupper" in that link to find stories of purloined fresh salmon, stinky smells, and mayhem) . Scupper may be the only dog in North America (he's Canadian) who made bigger messes and caused more problems than Willie. I swear both these dogs make Marley look like the model pet.
Soon, like me, President Obama will have something to take his mind off those petty concerns like failing banks, a stagnating economy, and an expensive and unpopular war. He will have a Portugese water dog.
Erin had her simulation and first radiation session yesterday, and we've already made it home from this morning's session. I can tell already that her breathing has improved and her cough has stabilized. By tomorrow, I hope her back pain will start resolving and that she will regain some energy. The steroid she is taking to reduce swelling in the area has ramped up her appetite, so I need to go and make some chili mac for the starving child.
Tuesday, February 24, 2009
Relief on the Way
February 24, 2008
Luckily, everyone got on the same page about Erin's breathing/coughing problem. . .maybe because it became so acute so fast. She has not been able to lie on either her back or her front for the past two nights (this makes falling asleep a challenge even for the most intrepid sleeper) and did not even think she could walk from one end of Jane Long to the other (we had secretly been hatching plans for Erin to be pushed from class to class on a rolling teacher's chair by one of her friends so she could make it to school). Erin's Houston docs got with the Bryan radiation oncologist, who got us in for a consult and some measurements this afternoon. It did take about three hours and some heavy medication to get Erin comfortable enough to lie back under the machine so they could do their job. Tomorrow's simulation will be another challenge, but after that the sessions ought to get easier each day as the radiation does its job. We also drew the bonus of a twelve minute drive to the appointment each day, rather than a 2.5 hour drive each way.
All I can say (in true Mardi Gras spirit) is Laissez le bon ton roulez.
Luckily, everyone got on the same page about Erin's breathing/coughing problem. . .maybe because it became so acute so fast. She has not been able to lie on either her back or her front for the past two nights (this makes falling asleep a challenge even for the most intrepid sleeper) and did not even think she could walk from one end of Jane Long to the other (we had secretly been hatching plans for Erin to be pushed from class to class on a rolling teacher's chair by one of her friends so she could make it to school). Erin's Houston docs got with the Bryan radiation oncologist, who got us in for a consult and some measurements this afternoon. It did take about three hours and some heavy medication to get Erin comfortable enough to lie back under the machine so they could do their job. Tomorrow's simulation will be another challenge, but after that the sessions ought to get easier each day as the radiation does its job. We also drew the bonus of a twelve minute drive to the appointment each day, rather than a 2.5 hour drive each way.
All I can say (in true Mardi Gras spirit) is Laissez le bon ton roulez.
Sunday, February 22, 2009
Up and Down with Erin Buenger
February 22, 2009
Despite advice to the contrary, Erin chose the bus ride to Houston over the personal day on Friday. She thought it was great to go to Houston and not have to go to clinic or the hospital. The 8th graders went to the Body Worlds exhibit. She, Sandy Schwalen, and I had seen that show in December. Really weird! The 6th graders looked at the other exhibits at the Natural Science Museum (most of which Erin has viewed numerous times. She saw one new one called the "Wonders of the World," which was a photography show.
Luckily, I made the decision to follow the bus down to Houston (just in case). This gave me the chance to have lunch with Davis in a non-hospital setting. By 2:00, Erin had burned her wick down pretty far and opted to ride home with me in her usual, luxury-appointed captain's chair with City of Ember audio book playing in the van rather than seated on a vinyl bench seat of a district bus with "100 Bottles of Beer on the Wall" as the audio accompaniment on the ride home. Beyond the obvious reasons this was a good call, her bus didn't leave for home until the exact high tide of Houston traffic (a student on the trip had to make a trip to the ER for a very minor injury, but most of you reading realize that "minor" in the ER often translates into a long stay because more "major" traumas get pushed ahead of you). We got home in time to walk the dogs, have some dinner, and get on with the evening. Everyone else on her bus arrived home two and a half hours later (at around 7:00).
Erin had little steam left most of the day on Saturday. She did manage to make it to Barnes & Noble to spend some gift cards, so she wouldn't have to be totally bored as she lay about the house. This is likely to become a more common occurrence. Erin's lung is doing her no favors. The pleural effusion on the bottom right side has persisted. It hasn't spread too much, but it has developed some crackles (at night, when everything has gone quiet, it's like sleeping with someone holding a bowl of Rice Crispies). She has also developed some pressure higher up on the same side, most likely from tumor progression. This is new and is causing her some labored breathing and coughs.
With forced rest much of the day, Erin had enough steam to host a Wii party for Jackson, Aaron, and Jesse and their folks. The kids Wii Played, Wii Sported, and Wii Fit for about five hours, while the adults ate, chatted, ate some more, drank, and beaded lanyards. Don't despair if you have heard nothing from me about your lanyard order. We are picking up steam, it's just that Erin can't work marathon sessions, so we have to pace ourselves.
Folks, we have hit a rough patch again, as evidenced by the number of times per day we have to visit The Erin Project for affirmations. If you meant to join the project, but thought too much time has past, please consider this your personal invitation.
Despite advice to the contrary, Erin chose the bus ride to Houston over the personal day on Friday. She thought it was great to go to Houston and not have to go to clinic or the hospital. The 8th graders went to the Body Worlds exhibit. She, Sandy Schwalen, and I had seen that show in December. Really weird! The 6th graders looked at the other exhibits at the Natural Science Museum (most of which Erin has viewed numerous times. She saw one new one called the "Wonders of the World," which was a photography show.
Luckily, I made the decision to follow the bus down to Houston (just in case). This gave me the chance to have lunch with Davis in a non-hospital setting. By 2:00, Erin had burned her wick down pretty far and opted to ride home with me in her usual, luxury-appointed captain's chair with City of Ember audio book playing in the van rather than seated on a vinyl bench seat of a district bus with "100 Bottles of Beer on the Wall" as the audio accompaniment on the ride home. Beyond the obvious reasons this was a good call, her bus didn't leave for home until the exact high tide of Houston traffic (a student on the trip had to make a trip to the ER for a very minor injury, but most of you reading realize that "minor" in the ER often translates into a long stay because more "major" traumas get pushed ahead of you). We got home in time to walk the dogs, have some dinner, and get on with the evening. Everyone else on her bus arrived home two and a half hours later (at around 7:00).Erin had little steam left most of the day on Saturday. She did manage to make it to Barnes & Noble to spend some gift cards, so she wouldn't have to be totally bored as she lay about the house. This is likely to become a more common occurrence. Erin's lung is doing her no favors. The pleural effusion on the bottom right side has persisted. It hasn't spread too much, but it has developed some crackles (at night, when everything has gone quiet, it's like sleeping with someone holding a bowl of Rice Crispies). She has also developed some pressure higher up on the same side, most likely from tumor progression. This is new and is causing her some labored breathing and coughs.
With forced rest much of the day, Erin had enough steam to host a Wii party for Jackson, Aaron, and Jesse and their folks. The kids Wii Played, Wii Sported, and Wii Fit for about five hours, while the adults ate, chatted, ate some more, drank, and beaded lanyards. Don't despair if you have heard nothing from me about your lanyard order. We are picking up steam, it's just that Erin can't work marathon sessions, so we have to pace ourselves.
Folks, we have hit a rough patch again, as evidenced by the number of times per day we have to visit The Erin Project for affirmations. If you meant to join the project, but thought too much time has past, please consider this your personal invitation.Thursday, February 19, 2009
ERIN COOKS
February 19, 2009
A necessarily short post this evening. I meant a longer one with photos and wit, but somewhere around the tenth hour of my day trip to Houston, I decided all you were going to get was a mini-entry.
Erin had a clinic appointment in Houston this morning, and we scheduled it early, so she could spend the rest of the morning and into the afternoon doing a photo shoot in the Ronald McDonald Room at the hospital. This was the first session to provide the artwork for a new cookbook that Erin is writing. It will have recipes that kids can cook even if they are stuck in the hospital (no stove or oven). Some of the recipes are fairly simple and a pre-schooler with some assistance could have a go at making and eating them. Others have, let's say, more complexity. The proceeds from the sales will go to support more research for pediatric cancer. That's her plan, and I'm sticking with it.
Anyway, Erin made frozen fruit salad cups, key lime pie, and guacamole for the camera today, and ran out of time to make twice-baked potato cuties. Kim Christensen did the photography, and I will be excited to see how they look. She did a fantastic job under primitive and interrupted circumstances.
Erin had looked forward to the day for a while, because, well doing a photo shoot sound exciting and possibly even glamorous. I think she imagined it more like sports photography, where she would be in the kitchen doing her thing, and the photographer would walk around trying to catch the right shot. Instead, it was more like "let's pretend to cook" so the photographer can get the angle and light right. Both my kids are all about expectations and things going according to (their) plan. Needless to say, it wasn't exactly what she expected. When she had to cut things short (not getting to the potato dish she had planned) because she had been recalled to the clinic for a hemoglobin transfusion, I knew better than to try and jolly her up. At that point it was merely a matter of surviving the day. This does not even count that the transfusion pushed our departure back so that she missed fencing (the first night with real foils).
She's asleep now. Tomorrow will be a better day. I think she plans on boarding the bus at school and driving back to Houston (within three blocks of Texas Children's, actually), to go on a field trip to the Natural Science Museum. Since we were just there in December, I might try to talk her into taking a personal day tomorrow, to get over her twelve-hour extravaganza today.
A necessarily short post this evening. I meant a longer one with photos and wit, but somewhere around the tenth hour of my day trip to Houston, I decided all you were going to get was a mini-entry.
Erin had a clinic appointment in Houston this morning, and we scheduled it early, so she could spend the rest of the morning and into the afternoon doing a photo shoot in the Ronald McDonald Room at the hospital. This was the first session to provide the artwork for a new cookbook that Erin is writing. It will have recipes that kids can cook even if they are stuck in the hospital (no stove or oven). Some of the recipes are fairly simple and a pre-schooler with some assistance could have a go at making and eating them. Others have, let's say, more complexity. The proceeds from the sales will go to support more research for pediatric cancer. That's her plan, and I'm sticking with it.
Anyway, Erin made frozen fruit salad cups, key lime pie, and guacamole for the camera today, and ran out of time to make twice-baked potato cuties. Kim Christensen did the photography, and I will be excited to see how they look. She did a fantastic job under primitive and interrupted circumstances.
Erin had looked forward to the day for a while, because, well doing a photo shoot sound exciting and possibly even glamorous. I think she imagined it more like sports photography, where she would be in the kitchen doing her thing, and the photographer would walk around trying to catch the right shot. Instead, it was more like "let's pretend to cook" so the photographer can get the angle and light right. Both my kids are all about expectations and things going according to (their) plan. Needless to say, it wasn't exactly what she expected. When she had to cut things short (not getting to the potato dish she had planned) because she had been recalled to the clinic for a hemoglobin transfusion, I knew better than to try and jolly her up. At that point it was merely a matter of surviving the day. This does not even count that the transfusion pushed our departure back so that she missed fencing (the first night with real foils).
She's asleep now. Tomorrow will be a better day. I think she plans on boarding the bus at school and driving back to Houston (within three blocks of Texas Children's, actually), to go on a field trip to the Natural Science Museum. Since we were just there in December, I might try to talk her into taking a personal day tomorrow, to get over her twelve-hour extravaganza today.
Monday, February 16, 2009
Once Upon A Time
February 16, 2009
Leicester, England
Rubber Plantations
London Model
The Who Drummer, Keith Moon
Skin Care and Facials
Ian McLagan
Red Hat Ladies of Austin
Jane Long Middle School
Wii Fit
Erin Buenger
Now what if I asked you to write a coherent story that connected the items in this list? It starts, "Once upon a time. . ." Can you finish it?
Here, let me help:
If you know the online game, Funny Farm, these places, people, things, and concepts would form a network of connections around the central key word, Kim Kerrigan (if you don't know Funny Farm, I promise you are really missing out on fun and distraction, and you should stop right now and give it a try.).
Did you Google Kim Kerrigan? If you did, you probably went to a Wikipedia article about her. That would help you write part of the story (up through "Skin Care and Facials"). Let me help you with the rest. Kim Kerrigan McLagan lived a full and vital life. A little over two years ago she died suddenly in an auto crash. Her impact on people was profound and long-lasting. A group of people who knew her (but did not always know each other) formed a group to keep her spirit alive. That group, The Red Hat Ladies of Austin, heard about Erin through a connection they had with a teacher at Jane Long (Erin's school). They decided that to help Erin with her goal of getting back into shape, so that she might return to competitive soccer someday, they would present her with a Wii, Wii Fit, and a full range of accessories so that her friends could support her in her goal AND have fun with her. They want her to continue to conquer the world with her smile and wit, much as their dear friend Kim did.
These wonderful folks, whom we have never met and who we may never meet, arranged the surprise for last Friday afternoon, shortly before the school dance. Erin is not speechless very often. Friday at 5:35 she was. As she pulled the paper back on the first box, her stunned look and flushed cheeks said it all. Eventually, she stammered, "Mom. . .mom. . do you know what this is?"
Here's how it went, step by step (I recommend clicking on each shot to zoom in and see the facial details):
All I could say then and all I can say now is "Wow!"
Why did I wait until now to post this entry? Well, Erin did have the Valentine's Dance about to start. Then, we had to run up to Dallas (only two hundred miles) on Saturday morning for cousin Emma's Pump It Up four-year-old birthday party.
No, it wasn't as calm and private as these two shots imply:
As one thing leads to another, being within an hour and a half of Clayton Sue's house, we felt moved to drop in on the Benson's in Fort Worth on Saturday evening.
Katherine (my sister) and Emma (the newly anointed four-year-old) returned with us to Bryan on Sunday, just in time to have Erin's buddy, Jackson, come over and help her set up the new Wii. They managed create their Mii's and bowl a line before we rushed off to meet another group of angels.
Some fine folks at St. Francis Episcopal Church heard about Erin's lanyards and asked us to come an teach a workshop, so they could make lanyards and raise money for pediatric cancer research, too. Boy, they did beautiful work, and while we shared the work, we shared some fine fellowship. At one point, I was explaining to the group how to know that you could stop adding beads and go to the finishing process. I wrapped a partially beaded wire across the back of my neck, so that the front two ends hung in front, and said, "most people would like their lanyards to come down about even with their bosom."
From across the room, I heard, "twenty or fifty?"
I, thinking 20 inches would be too short and 50 inches way too long, looked confused and said, "I beg your pardon."
The woman said, "Should it hit the bosom of a twenty year old or a fifty year old?"
Rim shot.
Anyway, we returned to regular programming this morning, with Erin not looking or feeling real great when it was time to get up for the start of a new school week. I hope it was just van lag (or whatever you would call it when you get hauled up and down the road all weekend). I think I may drop by for blood counts after school, since I have had a difficult time distinguishing Erin's lips from the rest of her pale face for a couple of days.
I always get in trouble when I start mentioning the kindnesses that people do for us, because we are touched by so many friends. Aaron and Jesse gave Erin carnations at school on Friday because they are great buddies. When she got home Friday evening (she ate so much and danced so hard that she accidentally threw up at the dance and got sent home early), a candy and flower arrangement from her retired historian friend, Jim Smallwood was waiting for her, just in case she needed to replace the calories lost from dancing and vomiting. The inestimable Bate family, who gifts Erin on so many special holidays, had another lovely box of surprises waiting for her when we got back from Dallas. There is absolutely nothing I can say to express how loved these action make us feel, so I will just say thank you.
Leicester, England
Rubber Plantations
London Model
The Who Drummer, Keith Moon
Skin Care and Facials
Ian McLagan
Red Hat Ladies of Austin
Jane Long Middle School
Wii Fit
Erin Buenger
Now what if I asked you to write a coherent story that connected the items in this list? It starts, "Once upon a time. . ." Can you finish it?
Here, let me help:
If you know the online game, Funny Farm, these places, people, things, and concepts would form a network of connections around the central key word, Kim Kerrigan (if you don't know Funny Farm, I promise you are really missing out on fun and distraction, and you should stop right now and give it a try.).
Did you Google Kim Kerrigan? If you did, you probably went to a Wikipedia article about her. That would help you write part of the story (up through "Skin Care and Facials"). Let me help you with the rest. Kim Kerrigan McLagan lived a full and vital life. A little over two years ago she died suddenly in an auto crash. Her impact on people was profound and long-lasting. A group of people who knew her (but did not always know each other) formed a group to keep her spirit alive. That group, The Red Hat Ladies of Austin, heard about Erin through a connection they had with a teacher at Jane Long (Erin's school). They decided that to help Erin with her goal of getting back into shape, so that she might return to competitive soccer someday, they would present her with a Wii, Wii Fit, and a full range of accessories so that her friends could support her in her goal AND have fun with her. They want her to continue to conquer the world with her smile and wit, much as their dear friend Kim did.These wonderful folks, whom we have never met and who we may never meet, arranged the surprise for last Friday afternoon, shortly before the school dance. Erin is not speechless very often. Friday at 5:35 she was. As she pulled the paper back on the first box, her stunned look and flushed cheeks said it all. Eventually, she stammered, "Mom. . .mom. . do you know what this is?"
Here's how it went, step by step (I recommend clicking on each shot to zoom in and see the facial details):
All I could say then and all I can say now is "Wow!"Why did I wait until now to post this entry? Well, Erin did have the Valentine's Dance about to start. Then, we had to run up to Dallas (only two hundred miles) on Saturday morning for cousin Emma's Pump It Up four-year-old birthday party.
No, it wasn't as calm and private as these two shots imply:
As one thing leads to another, being within an hour and a half of Clayton Sue's house, we felt moved to drop in on the Benson's in Fort Worth on Saturday evening.
Katherine (my sister) and Emma (the newly anointed four-year-old) returned with us to Bryan on Sunday, just in time to have Erin's buddy, Jackson, come over and help her set up the new Wii. They managed create their Mii's and bowl a line before we rushed off to meet another group of angels.Some fine folks at St. Francis Episcopal Church heard about Erin's lanyards and asked us to come an teach a workshop, so they could make lanyards and raise money for pediatric cancer research, too. Boy, they did beautiful work, and while we shared the work, we shared some fine fellowship. At one point, I was explaining to the group how to know that you could stop adding beads and go to the finishing process. I wrapped a partially beaded wire across the back of my neck, so that the front two ends hung in front, and said, "most people would like their lanyards to come down about even with their bosom."
From across the room, I heard, "twenty or fifty?"
I, thinking 20 inches would be too short and 50 inches way too long, looked confused and said, "I beg your pardon."
The woman said, "Should it hit the bosom of a twenty year old or a fifty year old?"
Rim shot.
Anyway, we returned to regular programming this morning, with Erin not looking or feeling real great when it was time to get up for the start of a new school week. I hope it was just van lag (or whatever you would call it when you get hauled up and down the road all weekend). I think I may drop by for blood counts after school, since I have had a difficult time distinguishing Erin's lips from the rest of her pale face for a couple of days.I always get in trouble when I start mentioning the kindnesses that people do for us, because we are touched by so many friends. Aaron and Jesse gave Erin carnations at school on Friday because they are great buddies. When she got home Friday evening (she ate so much and danced so hard that she accidentally threw up at the dance and got sent home early), a candy and flower arrangement from her retired historian friend, Jim Smallwood was waiting for her, just in case she needed to replace the calories lost from dancing and vomiting. The inestimable Bate family, who gifts Erin on so many special holidays, had another lovely box of surprises waiting for her when we got back from Dallas. There is absolutely nothing I can say to express how loved these action make us feel, so I will just say thank you.
Friday, February 13, 2009
"Worst Day of My Life"
February, 13, 2009
Erin came home with a cloud over her head after school yesterday and pronounced that "Today has been the worst day of my life." She proceeded with a litany of complaints:
"Someone stole both sets of my gym clothes;"
"We had to write an essay in math class. . .imagine writing in math class. . .you're supposed to do math in math class;"
"I had a Spanish test that I completely forgot about;"
"It was hot in social studies, and Mrs. Williams made us keep the door closed so the 8th graders wouldn't make faces at us when they walk by to the cafeteria;" and
"I got ten points off on my art test because she said I didn't write half a page on my essay."
I could bare keep from laughing in her face. For a girl whose life over the past six and a half years has been a parade of chemo, radiation, surgery, et cetera, et cetera (as the King of Siam said), this day of stolen gym clothes and other junior high foibles is the worst day of her life? Any middle school teachers out there? Doesn't this sound more like "typical" than "worst?"
Interestingly, she got over it and went to fencing. Then, afterwards, when I was carting her and Jackson to the ice cream parlor for a post-en garde treat, she wound up her angst yet again, and did a encore recital of the "Worst Day in My Life" for Jackson's benefit.
After we dropped him off, she said, "I always love to complain to Jackson. He always agrees with me."
Funny thing is, while yesterday may have registered as a completely bad day by Erin's standards, today is likely to rank really high on the other end of the spectrum. Some ladies have a surprise planned for her after school that ought to jerk her quickly back in the other direction.
Erin came home with a cloud over her head after school yesterday and pronounced that "Today has been the worst day of my life." She proceeded with a litany of complaints:
"Someone stole both sets of my gym clothes;"
"We had to write an essay in math class. . .imagine writing in math class. . .you're supposed to do math in math class;"
"I had a Spanish test that I completely forgot about;"
"It was hot in social studies, and Mrs. Williams made us keep the door closed so the 8th graders wouldn't make faces at us when they walk by to the cafeteria;" and
"I got ten points off on my art test because she said I didn't write half a page on my essay."
I could bare keep from laughing in her face. For a girl whose life over the past six and a half years has been a parade of chemo, radiation, surgery, et cetera, et cetera (as the King of Siam said), this day of stolen gym clothes and other junior high foibles is the worst day of her life? Any middle school teachers out there? Doesn't this sound more like "typical" than "worst?"
Interestingly, she got over it and went to fencing. Then, afterwards, when I was carting her and Jackson to the ice cream parlor for a post-en garde treat, she wound up her angst yet again, and did a encore recital of the "Worst Day in My Life" for Jackson's benefit.
After we dropped him off, she said, "I always love to complain to Jackson. He always agrees with me."
Funny thing is, while yesterday may have registered as a completely bad day by Erin's standards, today is likely to rank really high on the other end of the spectrum. Some ladies have a surprise planned for her after school that ought to jerk her quickly back in the other direction.
Tuesday, February 10, 2009
Back to School
February 10, 2009
I saw the stat counter climbing, so I knew a few of you wondered what became of Erin. Since she didn't run a fever and since she insisted on returning to school this morning, I let her go. . .even though I thought she looked like grits that had sat out on the table too long. My spies reported that she started off pretty slowly but perked up as the day went on. I even heard she was laughing with her usual lunch crowd in the cafeteria (this is good on two counts: eating, of which there hasn't been a lot in the past couple of days, and laughing, which truly is the best medicine).
We had planned on getting a CBC after school here in town, but the technician who usually does it was out, and the nurse thought we might want to avoid the accumulation of sick folks at the clinic. We agreed and took a pass until tomorrow.
Erin came home and ate second lunch or first supper, worked on her animation project for tech aps, and sat on the porch a while reading. Now she has cozied up with Teddy to keep her out of the kitchen.
I must be going for housekeeper of the year: the 5:00 whistle blew, and I am still scrubbing away on the kitchen and dining room floors on my hands and knees. Well, I took a break to post this entry, but I have just one section left. I am considering duct taping the dogs to the wall to keep them from walking on my floor, so that it might stay clean for a few hours.
I saw the stat counter climbing, so I knew a few of you wondered what became of Erin. Since she didn't run a fever and since she insisted on returning to school this morning, I let her go. . .even though I thought she looked like grits that had sat out on the table too long. My spies reported that she started off pretty slowly but perked up as the day went on. I even heard she was laughing with her usual lunch crowd in the cafeteria (this is good on two counts: eating, of which there hasn't been a lot in the past couple of days, and laughing, which truly is the best medicine).
We had planned on getting a CBC after school here in town, but the technician who usually does it was out, and the nurse thought we might want to avoid the accumulation of sick folks at the clinic. We agreed and took a pass until tomorrow.
Erin came home and ate second lunch or first supper, worked on her animation project for tech aps, and sat on the porch a while reading. Now she has cozied up with Teddy to keep her out of the kitchen.
I must be going for housekeeper of the year: the 5:00 whistle blew, and I am still scrubbing away on the kitchen and dining room floors on my hands and knees. Well, I took a break to post this entry, but I have just one section left. I am considering duct taping the dogs to the wall to keep them from walking on my floor, so that it might stay clean for a few hours.
Monday, February 9, 2009
And Slowing It Back Down
February 9, 2009
Alternative Title: I'm Skipping Sunday From Now On
Despite the upbeat, pump-it-up, keep-the-party-going post I wrote yesterday (scroll down if you missed it), things did not unfold on the same trajectory. Yesterday was the fourth Sunday in a row that Erin has felt punk. The first (back on January 18) she had the early effects of the pleural effusion. Then came two back-to-back Sundays with (what did the Victorians euphemistically call it?) dyspepsia. Yesterday, Erin looked like warmed over gravy as she stood singing the anthem in church, then she spent most of the afternoon on the sofa with a book. An 8:00 bedtime told me I couldn't just blame my imagination or the fact that she insists on burning the candle at both ends. This morning she woke with body and joint aches and a headache. I sent her back to bed.
She has rallied some, enough to eat a bit, knock off some homework, and of course, play some computers games. I also snapped a couple of photos to show you her new look. Her eye exam last Monday revealed that she is the smallest bit farsighted. Seems the extra screen time that a personal Macbook engenders was enough to strain her eyes and give her headaches. Thus, the $8 reading glasses from Walgreens (just for close work):
Oh yeah, and that is a trace of hair you see.
Alternative Title: I'm Skipping Sunday From Now On
Despite the upbeat, pump-it-up, keep-the-party-going post I wrote yesterday (scroll down if you missed it), things did not unfold on the same trajectory. Yesterday was the fourth Sunday in a row that Erin has felt punk. The first (back on January 18) she had the early effects of the pleural effusion. Then came two back-to-back Sundays with (what did the Victorians euphemistically call it?) dyspepsia. Yesterday, Erin looked like warmed over gravy as she stood singing the anthem in church, then she spent most of the afternoon on the sofa with a book. An 8:00 bedtime told me I couldn't just blame my imagination or the fact that she insists on burning the candle at both ends. This morning she woke with body and joint aches and a headache. I sent her back to bed.
She has rallied some, enough to eat a bit, knock off some homework, and of course, play some computers games. I also snapped a couple of photos to show you her new look. Her eye exam last Monday revealed that she is the smallest bit farsighted. Seems the extra screen time that a personal Macbook engenders was enough to strain her eyes and give her headaches. Thus, the $8 reading glasses from Walgreens (just for close work):
Oh yeah, and that is a trace of hair you see.
Sunday, February 8, 2009
Picking Up the Pace
February 8, 2009
Before Christmas, when Erin started feeling better and again in early January, when we had decent scan results, Erin expressed the desire to get more active. Wish granted.
It felt like old times this week:
Wednesday: school, student council, fused glass workshop, homework
Thursday: school, UIL practice, fencing, homework
Friday: invitation to Jackson's house, Bryan High production of "Little Shop of Horrors"
Saturday: UIL meet (five events, two ribbons), Toni and Sandy over for lanyard making and play
Sunday: sang the anthem in a quartet at church, rest (finally)
This week we get another wish granted: no trip to Houston this week, just a CBC drawn locally!
As for the lanyards, I have built a spreadsheet of orders, and we are working through it. For those of you who live out of town, I will take a break from my duties as Erin's social secretary and chauffeur at some point this week and email you more information and instructions. What we really need is just a skosh of patience. We will honor every single request and would love to have even more requests. Just remember that each lanyard is personally and uniquely designed and takes more than a minute to make.
Before Christmas, when Erin started feeling better and again in early January, when we had decent scan results, Erin expressed the desire to get more active. Wish granted.
It felt like old times this week:
Wednesday: school, student council, fused glass workshop, homework
Thursday: school, UIL practice, fencing, homework
Friday: invitation to Jackson's house, Bryan High production of "Little Shop of Horrors"
Saturday: UIL meet (five events, two ribbons), Toni and Sandy over for lanyard making and play
Sunday: sang the anthem in a quartet at church, rest (finally)
This week we get another wish granted: no trip to Houston this week, just a CBC drawn locally!
As for the lanyards, I have built a spreadsheet of orders, and we are working through it. For those of you who live out of town, I will take a break from my duties as Erin's social secretary and chauffeur at some point this week and email you more information and instructions. What we really need is just a skosh of patience. We will honor every single request and would love to have even more requests. Just remember that each lanyard is personally and uniquely designed and takes more than a minute to make.
Wednesday, February 4, 2009
Clinic Was A-Okay
February 4, 2009
Not much to complain about clinic yesterday. Erin had decent labs:
HGB 9.4 (dropping, but okay)
WBC 5200 (normal)
ANC 4600 (normal)
PLT 157,000 (barely normal)
Overall, not bad for two weeks deep into chemo. Erin's calcium stayed up, thanks to her cooperation on the nightly supplements (and thank goodness we can stop them!). The best news was that apparently, Erin's liver wasn't feeling as prickly and insulted this week as last week. Her liver panel does still indicate some inflammation, but both her GGT and her ALT headed down, for which I was relieved. Erin's lung has not miraculously drained itself, but Dr. Russell thought it was about the same as last week (not worse being better than worse).
Because her liver numbers had not skyrocketed, Dr. Russell felt comfortable adding another drug with ant-tumor potential to the mix. Erin will start Valproate this evening and over the next few weeks increase the dose so that we might see a therapeutic effect. For those of you keeping score, our made-up cocktail is etoposide, celebrex, zometa, and valproate (all oral, except the one fifteen-minute/month zometa drip). This combination guarantees that I will never know what side effects go with what drugs.
We also got to see Davis for a brief ten minutes. He came over to clinic to pick up his new phone. I didn't remember he had a 3:00 class, so once again it was a kiss and a hug, a quick exchange of instructions, and then goodbye.
For Erin, the day ran smoothly, thanks to many of you. You may not know it, but Mark Dungan tracks every $5 donation you make to Lunch for Life. In addition to hanging an ornament on Erin's virtual Giving Tree, he issues gift cards to Toy R Us every time you fill up her tree. Erin got her gift card recently and put it with the one from the previous year (and a little cash out of her stash), and bought herself a Nintendo DS. This was an unheard of extravagance at our house, and it really made the time pass quickly.
Erin had a big day today, with an INQUIRE Academy field trip to the Presidential library to see the space exhibit and the special show about Buffalo Soliders (so called because of their strength and courage), as well as student council, homework, and her fused-glass jewelry workshop. How she keeps it all going is beyond me. I think fatigue is a side effect on everything she takes, except her multivitamin.
Not much to complain about clinic yesterday. Erin had decent labs:
HGB 9.4 (dropping, but okay)
WBC 5200 (normal)
ANC 4600 (normal)
PLT 157,000 (barely normal)
Overall, not bad for two weeks deep into chemo. Erin's calcium stayed up, thanks to her cooperation on the nightly supplements (and thank goodness we can stop them!). The best news was that apparently, Erin's liver wasn't feeling as prickly and insulted this week as last week. Her liver panel does still indicate some inflammation, but both her GGT and her ALT headed down, for which I was relieved. Erin's lung has not miraculously drained itself, but Dr. Russell thought it was about the same as last week (not worse being better than worse).
Because her liver numbers had not skyrocketed, Dr. Russell felt comfortable adding another drug with ant-tumor potential to the mix. Erin will start Valproate this evening and over the next few weeks increase the dose so that we might see a therapeutic effect. For those of you keeping score, our made-up cocktail is etoposide, celebrex, zometa, and valproate (all oral, except the one fifteen-minute/month zometa drip). This combination guarantees that I will never know what side effects go with what drugs.
We also got to see Davis for a brief ten minutes. He came over to clinic to pick up his new phone. I didn't remember he had a 3:00 class, so once again it was a kiss and a hug, a quick exchange of instructions, and then goodbye.
For Erin, the day ran smoothly, thanks to many of you. You may not know it, but Mark Dungan tracks every $5 donation you make to Lunch for Life. In addition to hanging an ornament on Erin's virtual Giving Tree, he issues gift cards to Toy R Us every time you fill up her tree. Erin got her gift card recently and put it with the one from the previous year (and a little cash out of her stash), and bought herself a Nintendo DS. This was an unheard of extravagance at our house, and it really made the time pass quickly.
Erin had a big day today, with an INQUIRE Academy field trip to the Presidential library to see the space exhibit and the special show about Buffalo Soliders (so called because of their strength and courage), as well as student council, homework, and her fused-glass jewelry workshop. How she keeps it all going is beyond me. I think fatigue is a side effect on everything she takes, except her multivitamin.
Monday, February 2, 2009
Lanyard Blitz
February 2, 2009
I actually don't get Groundhog Day, probably because I live in Texas and cannot fathom six more weeks of winter. . .but Punxsutawney (punx-suh-TAW'-nee) Phil is a cute enough fellow. People in snowy climates seem to depend on him, so who am I to comment one way or another?
I have a confession. I walked next door to check on my mom about an hour ago. She had missed lunch at Gina's yesterday, suffering from the full effect of the blooming cedars (some people around here call these evergreens junipers, but those who do are probably still relying on Punxsutawney Phil's prediction of six more weeks of winter) on her delicate sinuses. This is an annual event, and it also makes her feel miserable. I went over to offer her some sympathy and ended up making her feel worse. You see, she said she was also suffering from some other non-allergy/non-sinus-y symptoms, and I practically fell out of my chair cheering and saying things like "that's great!" and "wonderful news." Why? Erin had the same things going on last night and this morning, and without confirmation that she might have picked up something contagious, I was really having a hard time dismissing the idea that the symptoms were somehow related to disease progression, pleural effusion, and/or an insulted liver. I was so happy, I dialed Walter on the cell and interrupted his lunch with a colleague to share my "good news." I think my mom was looking for less celebration and more commiseration. I felt a twinge of guilt for that, and a bit more of a twinge for sending Erin on to school after her eye doctor appointment this morning.
Okay, so no good mother awards today. I sent Erin to class with some unidentified contagious disease AND wearing sunglasses and unable to read small print because her eyes were still dilated from her eye exam. I did stop at Walgreen's and buy her some real sunglasses so she didn't have to wear those doctor-issued curly ones that don't stay on--even if you like the fashion statement and want to wear them.
As I was looking through the last few weeks of entries, I noticed that except for the school pic I posted on Friday, I have really slacked off posting photos of Erin (over three weeks). So here are some bonus shots. The first two are the quiche Erin made for Walter's birthday.
The second two are of the work party on Friday night when Erin and Leslie Borski got after the glass bead lanyard project.
We stopped by Mary Branch Elementary (Erin's old school) after the eye doctor appointment to deliver a special order lanyard to Mrs. Pope, and because Erin happened to have some lanyards made on spec handy, she caused a little lanyard sales blitz and quickly sold out. We still owe quite a few special-order lanyards to our friends (Laura K., Michelle B., Diane N., Josh D., Bev D., Nick B., plus four others for Leslie B. Also, an eyeglasses chain for Joanie F.). If you have requested one and you don't see your name in parentheses, could you drop me a note and remind me what you want? Erin has raised over $300 for the Children's Neuroblastoma Cancer Foundation selling lanyards in the last three weeks. Thank you for supporting her efforts!
And if you don't yet have your own custom-designed and built, handy and attractive badge lanyard, place your order by comment below, facebook, email, phone, or in person. Saturday we re-supplied ourselves for the next lanyard-making push. Does anyone want to have a beading party this weekend?
Erin has student council after school today and Wednesday (with much to do before the Valentine's Dance), clinic in Houston tomorrow afternoon, and UIL and her first fencing lesson on Thursday. Thanks for stopping by and for all the affirming comments and support Erin fans so generously give.
I actually don't get Groundhog Day, probably because I live in Texas and cannot fathom six more weeks of winter. . .but Punxsutawney (punx-suh-TAW'-nee) Phil is a cute enough fellow. People in snowy climates seem to depend on him, so who am I to comment one way or another?
I have a confession. I walked next door to check on my mom about an hour ago. She had missed lunch at Gina's yesterday, suffering from the full effect of the blooming cedars (some people around here call these evergreens junipers, but those who do are probably still relying on Punxsutawney Phil's prediction of six more weeks of winter) on her delicate sinuses. This is an annual event, and it also makes her feel miserable. I went over to offer her some sympathy and ended up making her feel worse. You see, she said she was also suffering from some other non-allergy/non-sinus-y symptoms, and I practically fell out of my chair cheering and saying things like "that's great!" and "wonderful news." Why? Erin had the same things going on last night and this morning, and without confirmation that she might have picked up something contagious, I was really having a hard time dismissing the idea that the symptoms were somehow related to disease progression, pleural effusion, and/or an insulted liver. I was so happy, I dialed Walter on the cell and interrupted his lunch with a colleague to share my "good news." I think my mom was looking for less celebration and more commiseration. I felt a twinge of guilt for that, and a bit more of a twinge for sending Erin on to school after her eye doctor appointment this morning.
Okay, so no good mother awards today. I sent Erin to class with some unidentified contagious disease AND wearing sunglasses and unable to read small print because her eyes were still dilated from her eye exam. I did stop at Walgreen's and buy her some real sunglasses so she didn't have to wear those doctor-issued curly ones that don't stay on--even if you like the fashion statement and want to wear them.
As I was looking through the last few weeks of entries, I noticed that except for the school pic I posted on Friday, I have really slacked off posting photos of Erin (over three weeks). So here are some bonus shots. The first two are the quiche Erin made for Walter's birthday.
The second two are of the work party on Friday night when Erin and Leslie Borski got after the glass bead lanyard project.
We stopped by Mary Branch Elementary (Erin's old school) after the eye doctor appointment to deliver a special order lanyard to Mrs. Pope, and because Erin happened to have some lanyards made on spec handy, she caused a little lanyard sales blitz and quickly sold out. We still owe quite a few special-order lanyards to our friends (Laura K., Michelle B., Diane N., Josh D., Bev D., Nick B., plus four others for Leslie B. Also, an eyeglasses chain for Joanie F.). If you have requested one and you don't see your name in parentheses, could you drop me a note and remind me what you want? Erin has raised over $300 for the Children's Neuroblastoma Cancer Foundation selling lanyards in the last three weeks. Thank you for supporting her efforts!
And if you don't yet have your own custom-designed and built, handy and attractive badge lanyard, place your order by comment below, facebook, email, phone, or in person. Saturday we re-supplied ourselves for the next lanyard-making push. Does anyone want to have a beading party this weekend?
Erin has student council after school today and Wednesday (with much to do before the Valentine's Dance), clinic in Houston tomorrow afternoon, and UIL and her first fencing lesson on Thursday. Thanks for stopping by and for all the affirming comments and support Erin fans so generously give.
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