Friday, January 9, 2009

Radiation Be Damned or Radiation Be Praised?

January 9, 2009

If George Eliot captured the truth when she wrote that "our good depends on the quality and breadth of our emotions," then the Buengers must be really wallowing in our good these days, because we certainly have stretched out emotions.

I drove myself crazy wondering and waiting for news of Erin's scans on Tuesday mornings. Believe me, I was worthless, even at the simple task I had set for myself (updating my Outlook contact information from Christmas card envelops). Then the call came and I found out Erin was ripe to enroll in a new clinical trial based on improved scans results. We all breathed a large sigh of relief: we had stemmed the tide on the beast, and it had not "taken off" in an uncontrolled frenzy. The mention of change brought a riff of thrill, but also palpitations of fear.

An extended phone conversation with Dr. Russell on Wednesday laid out more trial options that I imagined possible, given I thought we had scraped the bottom of the barrel in the fall: CEP-701, ABT-751, AURORA, and Cediranib (do you think that cancer drug makers are channeling either Star Wars droid designations or Walt Disney princesses when choosing drug names?). And, of course, there was the stalwart standby, topotecan/cyclophosphamide. Wow! Choices, and all oral. Manageable side effects. No transfusions. Limited clinic time. Maybe even lose the PICC line in time for warm-weather swimming! We just had to choose. And Dr. Russell even eased our burden there. She rank ordered her preferences.

I rang off with Dr. Russell and waited a couple of hours for Walter to get out of a meeting. We agreed that her first choice (CEP-701) seemed like the obvious first choice. Just as I picked up the phone to call and set things in motion, my text message signal beeped with the news that the last slot on the CEP trial had gone to someone else about twelve hours before.

Do you know what it's like to have the rug ripped from under your first choice for something (even if it had only been your first choice for moments, and realistically you can't discern the difference between your first and second choices)? Aack.

Still we had choices, just not our first choice. We opted for the second choice (ABT-751), and instructed Dr. Russell to "Make it so." I assumed we would need a bone marrow aspiration and biopsy and probably some other tests before we got started, and I was hoping for a Monday kick-off.

Thursday morning no one called to schedule anything and by noon, I was curious, but not worried.

Then we heard that Erin's holiday from treatment would last longer than expected.
All the clinical trial options on the table require further distance from radiation (six weeks, and we had only five) or measurable tumor outside the radiation field. This left us with no trial to enroll in and probably another round of scans before we can start anything, because last week's scans have a limited shelf life and then they expire. Double Aack!

Another knot we face is that if we give any chemo or even chemo lite to tide her over, it just extends out into the future the date when Erin could enroll in a trial (usually at least three weeks past the last dose). In the meantime we just add to her toxicity profile and wear down her body and psyche even more. This is a scary position to be in, because we know what can happen with no treatment. However, Dr. Russell thinks this is a good time for a short break to let Erin recover her bone marrow and blood counts and of course to get to have a normal, non-cancer life.

So we will board the old "tolerance of ambiguity" train and ride for a while. I suspect we will begin something next week or the week after. . .unless follow up scans show no tumor growth. In the meantime, we (The Buengers and Dr. Russell) will check every day for new trials opening and eligibility rules. We will try to notice if Erin's condition starts deteriorating while we simultaneously try to take full advantage of our enforced holiday (can you say birthday party sleepover at Sam's tonight?).

We will ponder whether we should rejoice because the radiation worked or curse because it blocks our move to the next step.

On a sidenote, you may have noticed that I added the time and weather for Canberra, Australia on the sidebar so that I could keep track of all the Tjoelkers during their six month stay down under. I have noticed a few times in the past that I have had visitors to this site from Canberra. If you live there or in the vacinity, could you e-mail me ( and let me give you the Tjoelker's contact information? They are very lovely and charming folks with three sons ages 4-12 who would love to meet you or at least get your recommendations for fun things to do in the area.


  1. I decided to donate my old Volvo station wagon the other day, went on line and found a place in Austin, filled out the form, then, when I got to the bottom of the page I found that the donation would go toward childhood cancer research. Without even thinking about it, I had ended up in the exactly right place . . . for Erin and Will and Ryan and Hans and all the other neuroblastoma kids who have taken up residence in my heart. I also take this serendipity as just another demonstration of your “Hope in ’09”—and the strong workings of the Erin Project spirit. I am glad for all the choices (maybe the same spirit is working to land you on exactly the right drug at exactly the right time). My heart goes out to you all as you hang on to the roller coaster of decisions and revisions.

  2. Dr. Zage at MD Anderson has a trial opened...the trial is Zactima for a few weeks and then accutane added in. The combo was very, very good in his nb mice...a very easy trial to qualify for, I think. Just a thought.

    (You do not know me, but I am a friend of Pat L)


  3. Meryl,

    Thanks for reminding me of that study. It looks promising and also pretty easy. Unfortunately, it has the same qualifying standards that we don't meet this week as the other NB specific trials.

    Thank you for keeping a look out. I have ask my doctor about the combo that Will is taking as a plan B if we can't get into a trial fairly expediently, and she said she would check it out and see if it would look good for Erin.


  4. Vickie,

    We visited with Dr. Zage and he has been following Eva through our doctors. If you can get to work with him, I would highly recommend him.