Starting a plan

Eila's oncologist, Dr. Thomas, has gotten responses from the other hospitals and doctors we reached out to and luckily there wasn't too much disagreement between them.  The doctors from Memorial Sloan Kettering and Boston Childrens would both treat Eila's third tumor as a new tumor, not as a recurrent tumor.  This is mostly good news.  If it's a new independent tumor that has not survived the past chemo treatments, then we don't need to change the drugs and introduce new, more toxic options - that's good.  However, that could also mean that Eila's kidneys are going to continue to make mistakes that produce tumors, so this wouldn't be her last time in this situation - that's not good.

The Wilm's tumor expert from Children's National agreed that it was reasonable to think that this third tumor is a new growth, but would still prefer hedging his bets a little on the recurrence issue.  If we decide to use the same chemo drugs that she received with the second tumor, he recommended changing the delivery and dosage slightly (using a protocol that is just slightly more aggressive).  The doctors from St. Jude's were alone in deciding to treat this third tumor as a recurrence and recommended a MUCH more aggressive treatment protocol using kidney-toxic drugs.

So that leaves us with a decision: new tumor or returning tumor ...  We've decided to start with the new tumor approach, but with the change of timing of the chemo drugs.  This third tumor was found at Eila's 2 year check-up, 2 years seems like a long time to be tumor-free, so Joel & I have wondered from the beginning about the origins of this tumor.  Then from our conversation with Dr. Ehrlich, we learned that other kids have continued to develop numerous kidney tumors even though they don't have any of the known genetic markers for Wilm's.  But there's no way to actually know the answer to this question, there's no test that can be done even after the tumor has been removed.

So Eila is having a port placement surgery and starting chemo on Monday.  She'll get the same 3 drugs she got for tumor #2, but we are following a different protocol with them (it's a protocol that is more commonly used for bilateral Wilm's tumor).  We will try this for a few weeks and then get new images of the tumor to see if it's shrunk.  If it's smaller, we move ahead towards surgery and more chemo.  If it's the same size or larger, we'll have to change the chemo drugs she's getting to something stronger and check it again.

Right now it feels like a good idea to start with the less aggressive drugs to see if the tumor will respond.  This will allow us to be a little gentler on her remaining kidney, since retaining kidney function is also one of our top priorities.  But we're still scared, we don't want to be wasting time but we don't want to have to put her poor little body through any more hell than is necessary.  I'm sure there won't be much sleeping at our house the night before her next imaging.

Tomorrow she'll be at the hospital again for a meeting with nephrology and a vascular ultrasound - surgery needs to check her veins and arteries before placing her new port.  We are so thankful for everyone who has offered help and advice as we work this out.  We are so grateful for all the doctors that have taken the time to think about her case.  And thanks again for keeping Eila in your thoughts and prayers, there's still lots ahead for her.