Monday, March 30, 2009
I made you wait today because something needed my attention. End-of-month bills. Including the last tuition installment of the academic year for Davis (Yes, I am smiling and planning what I will do with next month's cushion). It also took me some considerable amount of time to upload the disk of photos from yesterday's big event at the Lady Aggie soccer match into the slide show you see to the left bar. I'm not entirely through yet, but I'm tired of waiting so I will add shots as they become available.
Erin had a rather big weekend. We rolled into Friday with a visit from our dear, sweet Uncle Dave and Aunt Norma. Then the Wunneburgers and Ms. Radencic came by and Wii'd and bead'd. Aunt Kat rounded out the crew.
On Saturday we got the board games going: both Apples to Apples and Taboo.
And I guess I need to explain the title of the post. When my sisters and I were little, my mom would distract us in the car by having us play a game where we would look for road signs that had interesting, hmm, potential for a game we would play. It required switching the first letters of the words in the sign, so that Speed Limit becomes Leed Spimit. Can you guess what a Fart Est is?
That's right. The various schools in Bryan's district had their annual Art Fest. Erin had two pencil drawing displayed (I think Ms. Morris had hoped to put in Erin's perspective drawing, but sadly it remains in the studio, unfinished).
Sunday we got to entertain our favorite Congressman, Chet Edwards, who came to town to watch the Aggies play baseball (yeah 6-5 over Kansas).
We all wish we could have joined all our friends and Erin Fans in the Lady Aggies win over TCU. I can not help but get choked up over how much trouble everyone went to to honor Erin. The Aggies have never worn something other than their official uniform in a game. And the TCU team added to the spirit of the game by adding green laces to their shoes. Thanks to everyone involved, from the planners to the fans to those of you in far-flung places who wore green in solidarity! Special thanks to Lisa V. who originated the scheme, to Coach G. who made it possible, to the Barretts who organized the fund drive for Lunch for Life, and to Terri G. who took all the fab photos! You can view some other great action shots of the Lady Aggies at play at this link.
Most of you may want a little Erin health information. The biggest news to report is that Erin finally got over the nasty virus and started eating again about a week ago. You can see that she is still exceptionally thin, but she's has really picked up the pace and eats three (small) meals every day plus snacks. We will check counts tomorrow and see where we stand there. Otherwise, the last six days have been a steady improvement in spirit, energy, and activity.
Thursday, March 26, 2009
If you love good soccer (even in the off season), if you love to support the Aggies, if you love to wear green, if you want to be an Erin fan, put on your green and go to the soccer complex on Sunday. Look for other Aggie fans wearing green. Someone will be there to take your group picture.
In other Erin news:
We got the Wii going last night, and Sam and Tori from the Mystic '97 came over to test it out and to contribute to the lanyard effort. Davis and Erin's cousin Mark even jumped in to cow ride, pop bubbles, and shoot nine ball. Davis had come home to borrow one of the cars for a while, so we really had a full and happy house.
We finished The Last Treasure this morning and Erin recommends it highly. By the last fifty pages we were racing through it, not even pausing and doing little chores between chapters. This afternoon we got the beading going again (Heidi, if you are reading, Erin is holding the lanyard she made for you.)
Now there is a hot scrabble game going. Believe it or not, Erin started this game by emptying her whole tray and using all her tiles (for non-scrabble fans that gets you a fifty point bonus, plus your letters) on her first turn: D-I-G-N-I-T-Y. Coincidentally, she started our last game together the same way, using all her tiles to spell N-O-T-A-B-L-E.
Tuesday, March 24, 2009
I realized when I was answering e-mails today that it borders on the bizarre when I write: "Erin has had a pretty good day and is eating a little soup right now. It's a pitifully small amount but better than nothing." I'd rather report that she was scarfing down ribeye like a tiger cub, but she's not. Some days she doesn't eat anything.
I look at Erin and see a weak child, but I don't really compare her mentally to the strapping fireball that was running around here just weeks ago. We are really in the moment. We finished The Amber Spyglass yesterday and started The Last Treasure first thing this morning. She is watching America's Funniest Video right now, which explains why I'm at the computer (1. I don't get much out of AFV; and 2. Erin does so my tether to her is a bit longer for the moment.). We spotted a hawk feeding in the field across the road from the house yesterday and watched her for over a minute with the binoculars.
Here's a photo from last Thursday:
Here are a couple of images from the weekend that I grabbed off my niece's facebook (I guess that's why they are small). Please don't notice that Erin is wearing the same shirt. George and Carmella sent it to her from Oxford, and she refused to take it off for days and days. The second shot is what we see from our back porch every evening.
Anyway, we appreciate the waves of comments and e-mails that have flowed in. We may not respond immediately (though I promise we read and re-read them all hungrily). Thank you.
Sunday, March 22, 2009
We made it to Washington-on-the-Brazos last Wednesday for perhaps the most perfect day of the spring. Erin fed the hogs and Jackson used old-fashioned tools to carve a wooden spoon. The oxen population had tripled since our last visit and now Erin is friends with Bud and Abe (the old guys), Skinny and Shorty (the four-year-olds), and Tex and Tippy (the babies). Thursday was even better. Jimmie Homburg brought the fused-glass jewelry making stuff out to the house since there was no School for Christian Living this Wednesday (spring break), and we caught Clayton Sue on her way back from Corpus to Fort Worth. The girls made jewelry and lanyards and because they can multi-task (something I can't do) also watched the DVD of The Spiderwick Chronicles.
Unfortunately things screeched to a halt on Friday. I think Erin must have some tumor progression on her skull (no, I can't actually see bumps or anything) but she has a very persistent headache and dizziness when she sits up. Being vertically challenged really limits what you can do. These days we spend most of our time reading out loud to Erin (she is an enthusiastic listener). We also had the great luxury of having Walter's sisters and nieces in, so it was an entire lanyardfest weekend. Erin appreciates people hanging out and chatting (and working. She is really a bit of a task master, approving designs and making sure everyone has something to do.). Walter and I have also gotten a little yard work done, especially outside Erin's window where she can appreciate the spring flowers and the many cardinals and other songbirds that congregate by the front yard feeder.
I wish there was something that each of you could do to help Erin feel better. If you are around and want to read, bead, or weed you can. Otherwise, prayers work wonders.
Wednesday, 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.
Monday, 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.
Saturday, March 14, 2009
10.3/130 to 0
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
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
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
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
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
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.