Merry Delayed Christmas

12/27/06

Merry delayed Christmas to everyone. We certainly enjoyed the peace of the season and all of us hauled in more than our deserved share of largess. Davis served as liturgist in the morning service on Christmas Eve and read the lesson at the family worship on the afternoon. Erin both sang and rang handbells at that service, as well. I jumped in with my trombone for the prelude music at the evening service, but we all took a pass on the midnight service, so we could be at home at a decent hour.

Walter and Moo had to do their performances at home, since they missed out participating at church. Moo rendered a rousing version of "Twas the Night Before Christmas," and Walter read the Polar Express (managing to do so without crying, which is more than I can say for yours truly, when that is my Christmas Eve duty).

Christmas will continue all week as various aunts and cousins arrive on their own schedules. What could be better than taking the Twelve Days of Christmas literally?

Erin attempted a blood draw yesterday, in hopes of officially being released from the Potassium Tablet Regimen (I say "officially." Unofficially we stopped the dreaded K on Saturday because it caused so much tummy upset. I just thought it was doing more harm than good for her to lose her meals to vomit or loose bowels and to punish her with stomach cramps, as an added bonus.). I was also eager to see if the indicators of infection were back in line with where they should be and if her immune system still needed a boost.

Unfortunately, Erin's veins chose yesterday to be particularly small and rolly. Her favorite nurse could not hit the vein after three tries, so we gave it up, did a finger stick, and left (I believe this torture is going to cost me bathroom furniture for the doll house--there's always a price). With a finger stick you can get a read on white count (low, but okay, showing no infection this week), hemoglobin (slightly low, but okay), and platelets (robust, probably because she hasn't been participating in her usual dangerous activities).

I am still concerned about Erin's diminished appetite and general lack of energy. She seemed pretty normal at Nico's Bunko party yesterday afternoon, but then ate very little at dinner and slothed about until bedtime. This would probably not be concerning to some people (in fact a calm rather than frenetic child might be a welcome relief), but a cancer parent often interprets anything out of the ordinary (and sometimes ordinary things) as a sign that something bad is happening inside. Erin has scans in two weeks, so this concern may be the usual pre-scan anxiety (remember I have written about this before). Relapsed neuroblastoma patients don't usually get twenty-one months of progression free, high quality life. Still, worrying will not keep cancer away nor stop it in its tracks if it's growing, so I will set the worrying aside, unglue Erin from whatever she is doing in her room, and go outside to enjoy the brilliant sunshine and unscheduled day.

What Sugar Plums Dance in Your Head?

12/23/06
What Sugar Plums Dance in Your Head?

The Buengers have myriad answers.

Erin:

• Personal Energizer batteries (it's a bummer running out of steam just when you get to good part)
• A visit from Santa (who may or may not be a real guy, but who's willing to chance it?)
  
• Fewer pills (hard to tell the difference between the viruses and the medication side effects)
  
• That Chet Edwards' delayed throat surgery (January 15) comes out all right, and that he doesn't drive J.T. and Garrison crazy with the summoning bell she suggested

Davis:

• Sleeping in (no explanation needed)
  
• Grades he deserves (is there any other kind?)
  
• That Dean Forman drinks a hefty stein of eggnog for Christmas, then logs on and makes a fatally blundering move in the correspondence chess match

Walter:

• That he regain his stamina (no joke here, just a sincere wish to put the Erin-born viruses behind him)
  
• That he enjoys Davis and Erin and the holiday (Again, no joke here)
  
• All problem faculty from the history department volunteer to teach at A&M's campus in Qatar
  
• No more destructive, wall-paper eating dogs
  
• No more garbage-eating dogs who ingest so much extra stuff that their feet don't touch the ground when they nap on their sides
  
• No more dogs who are almost blind and definitely deaf who wander off after dark and don't come back unless someone stands in the cold and dark calling their name for a half hour

Luke:

• Someone to chew his food (preferably steak tartar) for him,
  
• While rubbing his belly,
  
• And not complaining about the wonderful odors slipping from between his back legs

Uma:

• No one but her getting attention
  
• A closer garbage dump (the walk is getting a little onerous)
  
• A tiara

Willie:

• Someone putting a giant chew stick (12 feet tall), full of tasty wooden, plastic, and glass morsels right in the living room
  
• A daily walk with strategically placed piles of leave desperately needing someone to pee on them (another reason not to jump in random piles of leaves)
  
• An adversarial bunny residing in the nearby tank farm willing to wait coquetishly every morning at 6:00, cotton tail erect, to lead him on a merry romp, and thus delay his real walk by fifteen minutes

Vickie:

• The soccer dream: She shoots. She scores.
  
• A dark chocolate chip and pecan cookie warmed on the lip of the coffee cup each morning before the children awake
  
• Healing for all the children with neuroblastoma and peace for their families

Other than Willie, do you think anyone else's wishes will come true? I'm counting on it!

Power of Positive Thinking

12/21/06

When Walter and I came home last night at 9:30 from dinner out, we found Erin playing poker, perky as a bunny. It's been a while since I used perky and Erin in the same sentence.

She told me it was the power of positive thinking. Davis had told her to tell herself, "I feel good. I feel well." over and over again until it came true. That, a little pixie dust, some prayers, and a Z-Pak will work wonders.

IVIG Aborted

12/20/06

Well, the short version is that Erin ran a fever on Monday while the nurse was doing vitals to prep for the IVIG (intravenous immuno globulin) infusion and they could not go ahead with it. Pause...Erin just wandered in and asked me if I was going to write about the "stinky" day we had on Monday...Resume. I don't think I'll give you the whole run down about how the triage nurse had it on her mind to stuff us right into the hospital without passing go and didn't really want to hear my non-medical opinion that Erin had her port out last March and didn't need to be cultured or hospitalized when she ran a fever. The question I asked was, could we have the IVIG infusion with a fever or should we just go home before we made other people sick. We were only there four and a half hours before we got an answer. . .go home. We didn't need to hear it twice and were on the elevator before you can say scat. We grabbed Davis and his meager basket of essential stuff and headed down the highway.

The longer version would include the story of the Erin who hasn't felt well since the last update. Until today everything pointed towards viruses that just needed to run their course. Today, Dr. Parr found an ear infection and heard a little rattle in her chest. So, Erin started a Z-Pak, and I think she feels a little better already.

It has been so strange to see our little trooper so down and out. She hasn't eaten much in a pretty long time and is lethargic. Her cough could wake the dead, and she is breathing more shallowly than usual. I can't wait for her to feel better so we can get back to our normal routines, another of which was thrown off last night.

We had waited to put our Christmas tree up until Davis got back from college. Yesterday he and Erin picked it out together. It is by far the largest we have ever had. Davis had to do battle with it to cut it, to carry it home, and with Walter, to get it set up in the living room. All the while I made Erin rest so she would feel like putting on ornaments in the evening. We sat down to dinner, where Erin ate eight bites of green chile chicken tamales, got the chills, recorded a temp of 103.1, took a Tylenol, and promptly fell asleep. It put a damper on the festivities.

Today (post Z-Pak) she is feeling well enough to complain of boredom and ask when Walter and I are going out so she can watch television. Things must be getting better!

Hopefully things will get better quickly and I can post a livelier update before Christmas. In the meanwhile, all of our thanks and appreciation go out to our friends who have given up their lunch for Erin. She has earned 314 ornaments thanks to your generosity. I wish I could express my gratitude to each of you in person. It truly resonates the spirit of the season when people busy with their own joys and families can take the time to think of those like Erin, and actually go to the effort to do something to make them better off! Thank you, thank you, thank you.

P.S. We at least had the good news on Monday that Erin's potassium levels had improved and were now merely low (not extra low). Perhaps by next week she can be off the K-tab for good.

Immuno Compromise?

12/15/06

Medical Update--Still good on the cancer front. It's the normal germs that are getting us down.

Erin always fools me. Like the combat soldier that says "Bring it on," she gets up and attacks each day anew. Somehow, over the last month, I let her mesmerize me into believing that she wasn't that sick. I kept telling myself that her cold symptoms were improving, that surely the stomach cramps and lethargy form the gastroenteritis were about to wind down, that she always gets a cough this time of year. Taken in combination with her immunocompromised body, it just isn't true, as her blood count numbers told us yesterday.

White Blood Count--2200 (this is low and has been this level for weeks with no improvement)
Absolute Neutrophil Count--1400 (this is low, but not too dangerous. If she entertained a bacterial infection, she could probably fight it off)
Hemoglobin--11.4 (this is a bit low, probably a result of virus)
Platelets--199,000 (this is normal, but much lower than she has been running. Again a sign of general ill health)

Plus, her blood chemistry was a bit wonky. Especially the potassium. You never want to scan the lab report and and see LL next to one of the numbers. That means Extra Low, which is why Erin has added potassium tablets to her medical regimen, at least until she recovers. Why does potassium drop? Poor diet and diarrhea. Well, that explains that and also why she has lost five pounds in the last month and why we've had to message her cramping calves at night..

Dr. Russell also tested the three components of Erin's immune system. Surprisingly the IGM, which measures the ability of the digestive system to fight off microorganisms was normal (perhaps finally recovering), but both the IGG (which makes up 80% of the body's immune system) and the IGA (not a grocery store) were low. On Monday, Erin will have an infusion of immunoglobulin, which is like getting a plasma transfusion of thousands of people's immune components mixed together. We're hoping this will boost her back to good heath and help her make it through cold and flu season without further difficulties. Nobody really wants to spend their first day of Christmas holidays in the clinic for five or six hours, but since we had to be in Houston to pick Davis up anyway, we thought we might as well get it done with.

Here's to a healthier holiday!

One non-medical update: Erin thanks everyone who has given up lunch for her. She has received 199 ornaments in the week since I posted the request. That is awesome, and we couldn't appreciate it more. Neuroblastoma is a complicated disease, and we do not know enough about it. Every lunch is one step closer to discovering the silver bullet, which is what we are pinning our hopes on.

One More Thing

12/7/06

Just one more thing to add to yesterday's entry. If you have four minutes, take a look at this video of Spencer Dolling. He has had neuroblastoma as long as Erin has. Erin and Spencer are the lucky ones. They have great lives!

Left You Hanging

12/6/06

Didn't mean to leave you hanging. A variety of things have intervened that kept me from updating, but count that as your good fortune as it means more chapters in the saga...

Check out The Davis Report for Chapter 4--Matt and Davis Do the Microplex

Chapter 5--The Household Changes Sizes

Part of the surprise of Thanksgiving was that my sister, Katherine, didn't make it down to Bryan. She succumbed to a violent stomach bug and stayed at home in Sacche weathering the storm. She did, however, send my niece Emma to enjoy the holiday festivities. Emma stayed when the rest of the family went back to Dallas on Sunday afternoon, and Erin and I got to enjoy "the little parrot." Emma is at a very cute age (22 months), where her vocabulary is expanding exponentially, and she likes to try out every word she hears (since I save cursing for very special occasions, this has not been a problem, so far). For a variety of reasons, it looks like my mom and I will have Emma at least through the 15th, and perhaps through Christmas. What I have forgotten about caring for toddlers could fill Reed Arena, but I remember the main rules: love 'em, feed 'em, rest 'em, change 'em.

Chapter 6--'Tis the Season to Be Germy

Sharing and caring. That sums up Erin's philosophy of ordinary childhood illness. Don't have a germ? Get one. Have an extra germ? Pass it on to someone who might not, through no fault of their own, have enough.

Erin's head cold lingered through the week after Thanksgiving, but blood sample evidence, taken on that Thursday, indicated that she was getting better (ANC up a full 1000 points from pre-Thanksgiving levels to 1700). I, on the other hand, found myself host to an increasing number of cold symptoms (sniffles, phlegm, sneezing, lethargy), none debilitating, all irritating. The tiredness and under-the-weather feeling persisted for both of us. Erin even had the nurse call home on Friday with a request that I pick her up early. Of course, when I got there, she had learned that all her buddies were staying at the park after school, and she was no longer rearing to go home. A little head cold didn't stand in her way to see the Live stage production of Scooby Doo on Saturday afternoon either.

Saturday night, Sunday, and Monday were a different matter. Erin somehow picked up the stomach bug circulating in the neighborhood, despite multiple layers of protection from the carriers. We stopped giving her Celebrex when she stopped eating, since it tears the stomach up pretty bad if not taken with food, and Erin wasn't willing to risk eating anything that was going to come out the other end in an unrecognizable format. True to form, she shared with me the gift that just keeps giving.

Through it all, Walter has stood like a rock, but today it looks like chinks are beginning to appear. He stayed home this morning to read in his chair. I wish him a quick recovery. I should have warned him to beware red heads bearing gifts.

Chapter 7--Putting the Semester to Bed (short and sweet)

Those of you used to the circadian rhythm of the semester may have noted that the goings on in the Buenger household of the last couple of weeks have coincided with the end of the academic year. Walter and I have been grading like beavers, holding students' hands who now wish they had studied and attended more when they had the chance, and listening to litanies of unsolvable personal crises.

I also had to confront cheaters.

I can't give you the details but let's just say that the Aggie Honor System Office is now on my Buddy List and my speed dial.

Chapter 8--What's Next?

The Buengers are ready to embrace the Christmas season, as soon as we can get it all together. Erin has another week and a half of school, with a routine clinic visit to Houston on the 14th. We will drop by Davis's that day and pick up anything he won't need during finals but wants to have in Bryan over the holidays. Walter and I should be done with finals and (fingers crossed) grading before then. Davis's has four finals, including Organic Chemistry on Saturday morning, December 16. He'll be done on the 18th, and we will retrieve him then and officially begin Christmas!

Chapter 9--Lunch for Life

It's that time of year again!

PLEASE GIVE UP YOUR LUNCH FOR ERIN.

Children's Neuroblastoma Cancer Foundation has launched this year's Lunch for Life. Once again, we are getting into the holiday spirit by asking folks to give up their lunch to help find and fund a cure for neuroblastoma.

Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation you make on Erin's behalf has three effects: 1) her tree receives one ornament for every $5 you donate; 2) every donation generates a Giving Code that gets Erin bonus ornaments if you pass it on to a friend to use; and 3) each ornament creates one entry for that child into our Disney World giveaway. For example, if I give up lunch all week ($5/day) and donate $25 to Erin's tree, she gets 5 ornaments on her tree and 5 contest entries. I also get a Giving Code to pass along. (PLEASE NOTE: Erin's Giving Code is 21147) When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again.

I just visited the link and it took less than a minute to give up my lunch! If you're skeptical, spend some time on the Lunch for Life website. ALL FUNDS raised through Lunch for Life go directly to support neuroblastoma research and initiatives. Erin might not benefit from the research, and it might not save her life, but we hope it will. We want to wipe neuroblastoma off of the face of the earth!