New worries

Eila had 5 appointments over the last two days. We got some good news, some bad news, and are left with many more questions. First Eila had an ultrasound for her kidney/tumor. Although this was her most traumatic appointment  for the day - she screamed and cried through the whole thing - we got good news. In just two weeks of chemo it had shrunk from 2.4 x 2.9 x 3 cm down to 2 x 2.4 x 2.5 cm! So, we're making progress on saving as much kidney tissue as possible.

After that, Eila had an echocardiogram. Although this is basically an ultrasound of her heart, but she didn't fuss at all. She really liked see her heart on the computer and loved getting to hear it. From this test we got more good news, her heart is healthy and can withstand the new drug (she'll be receiving it next week). She also enjoyed being on the surgical floor for this procedure because they have fun toys.



Next, she had chemo. Last week had a lot of drama/tears with bandages, so we were a little nervous for this week's appointment. But it all went very smoothly, and she enjoyed more popsicles (blue, her favorite color).

From July/August 2012

For the last Tuesday appointment we meet with a pediatric nephrologist (kidney specialist). We'd sought out a meeting with a nephrologist because we want to know what it will mean for Eila to have less than one whole kidney. Fortunately, the doctor confirmed that Eila's kidney is working well right now, even with the tumor; however, it's hard to know before her surgery just how much function she will still have, but it's encouraging that the tumor is shrinking.

Unfortunately the doctor told us that she doubted that Eila's kidney would be able to keep up with her as she grows and develops, and it's simply a matter of when (not if) she'll need a transplant. At this point, we have no reason to believe that this will happen soon, but the doctor believes it will happen sooner than we hoped - potentially as early as her teenage years.


Today's appointment was for a second opinion with another pediatric oncologist (Dr. Olson).  She reviewed Eila's case history and did a little literature research on her situation. She said she completely agreed with everything we did last year for the first tumor.  Now Eila has metachronous bilateral Wilms' tumor, and according to the studies Dr. Olson told us about this new tumor is a much more serious (and rare) situation - it represents only 2-3% of all nephroblastoma cases. She told us that the survival rate for patients with Eila's condition is only 40%!  This is much, much lower than anyone (including Eila's current oncology team) has ever communicated.   Dr. Olson recommended taking a more aggressive chemo regiment. 

The new cancer diagnosis combined with the information from the meeting with the nephrologist was much more bad news than we were prepared to get. It's left us with many more questions than answers. So now we're hoping to find a Wilms' tumor expert to consult with; although they won't have a magical cure for us, we hope they will be able to assure us that we're on the very best path forward.