Thursday, January 22, 2009

En Garde

January 22, 2009

I feel like Loki, the Norse God of Mischief, has trained his gaze on the Buengers. While enjoying the break from treatment and waiting to meet eligibility standards for a new clinical trial, Erin has felt well and enjoyed all of her various activities. Unfortunately, she developed a little fluid on her lung over the weekend. For those of you who googled or goodsearched pleural effusion after reading Tuesday's entry, don't panic. Erin does not have pneumonia. She does have some pain and is taking Tylenol more often than an eleven-year old should. Her breath is a little more shallow on the right side, but the amount of accumulated fluid is quite small. We did not have to stay in Houston overnight. She returned to school Wednesday morning (a tad late, since I let her sleep in after our thirteen hour jaunt to Houston and back). She made piano lessons after school and her fused-glass jewelry workshop last night.

Where does that trickster Loki come in?
The CT scan showed tumor growth (I'm surprise at how much, but not that she had progression, which I consider pretty much a no-brainer, in the absence of treatment). In fact, tumor activity probably caused the fluid to back up into the lower lobe of her lung. We needed evidence of tumor growth to qualify for a trial. . .HOWEVER. . .having a pleural effusion really limits what drugs you can give. It keeps her from qualifying for any of the trials we were waiting for. It also eliminates a lot of the drugs we can do off-study, because of the danger of administering the required extra fluids. We are starting oral etoposide (which is a once-a-day, at-home gelcap) today.

What did the Buengers do in the face of this cruel joke? Enrolled Erin in six sessions of Fencing for Kids, starting week after next! Just a warning to the beast neuroblastoma, Erin will soon be armed and dangerous.

Erin has agitated us about taking fencing for a number of months. It's part of her personal plan: get a little more active, a little stronger, a little more endurance. That, she hopes, will pave the way to getting back to more athletic pursuits.


  1. yay for fencing.
    all I can say is you've got BIG prayers coming your way from the woodlands.
    we love you girl!

    beads and lanyards to sing were sent priority mail this AM.
    Love ya - Lara

  2. woops, meant lanyards to sling, not sing...

  3. Go Erin!
    I hope fencing is awesome. We're thinking of you in CA.


  4. That &^%! NB really stinks! Good for you for signing Erin up for fencing lessons - she will show NB who the real boss is.

    Take care, Charon Edgington

  5. vickie,
    well, shoot. i was hoping to hear something different, but continue to be amazed by how erin lives her life. she is my role model and we could all learn a lot by how she (and her parents) approach each day. erin, i don't even know you, and i don't want you to get the creeps, but i think you are AMAZING. when i was in grad school in baltimore my dentist (who was beyond gorgeous) was an avid fencer. his license plate said "epee," which i thought was pretty cool.
    en garde indeed. you go, girl!
    toby's mom

  6. You go girl!
    Fight NB and build your strength!
    We are cheering you on...
    The Lilie's

  7. All day of the inauguration, I thought of Brave Erin (who belongs at such events) and I also told my kids about MLK's "I have a Dream" speech and couldn't even get out the TITLE without choking up! What we have in common Vickie! Erin is so amazing. Fencing of all VERY appropriate for our Warrior Princess. Praying still for the right treatment and for the effusions to resolve quickly....blessings and continuous prayers!!!

  8. I can totally see Erin fencing with her spunky little attitude! Michael took fencing in college and loved it. You go, Erin! Keep fighting in fencing and against NB. We are all cheering you on!

    Love and Hugs,

    Reeves Family

  9. Hi my name is Patrick and my 6 year old daughter, Jenna has NB and it currently resides in her lungs. Would love to talk a little shop with you so please shoot an e-mail my way.

  10. Loki needs to leave Texas,!
    and take most evil NB with him/her!

  11. Vickie, I feel your frustration. HOPEfully this fluid will clear up soon and you can get on one of the studies you had originally wanted. Erin's strength and tenacity are inspiring. She makes me feel so weak crying over my aches and pains. Ryan would be so jealous. He has wanted to take fencing for years. I just wish there were some place near us and we'd do it. I took fencing as a PE at UGA and loved it. HOPE she has a great time and builds her strength. Hugs! Missy Morgan

  12. Hi guys well crap to say the least. This is not at all what I was expecting to read this morning. Way to go Erin on the fencing that sounds like so much fun I knwo that you will show NB a thing or to. WE are always praying for a cure and of course always praying for you. Stay strong
    Tracy Ash

  13. I cannot wait to hear the stories of Erin, the sword and perhaps some inclusion of Teddi!! You rremain in our hearts and our prayers!

  14. I'm glad it is not pneumonia, but am so sorry about the tumor growth. I wish the trial qualifications were not so inelastic. I was hoping Erin would be a candidate for the DFMO you recently posted an article about. As usual I am awed by the Buenger response to this latest hidden trickster in the wicked neuroblastoma hat. "Poise and ferocity" is how you once described Erin's response to all the slings and arrows. Fencing will be the PERFECT avenue for the expression of that combination! Here's hoping the response to the etoposide will be as good as it was back in '06.


  15. I'm sorry you can't get right into a trial but I know Erin will bounce back with her usual resilience.
    I hope fencing is great fun!

  16. Erin-
    Way to go!!!! Make good use of those fencing classes and KICK some NB BUTT!!! Sorry to hear about the tumor progression :(

    Sending you all hugs and love

    Knock Knock!
    Who's there?
    Ben who?
    Ben wonderin' what you're up to!

    Better send me one back!!!!