Help!!!

Waiting is so hard.  We feel like the walls around us are teetering and could collapse at any minute.  We struggle with trying to lose ourselves keeping busy at work versus losing ourselves in sadness of a third tumor.  Every family with a sick child must go through this and it is completely unfair.  We feel so small but then we look at Eila, who is so small, and know that we need to assure her that we are doing all we can and that everything will work out.  But will it?  We are getting information daily from her oncologist, family, friends, the internet and it is so much to take in and think about; yet at the same time it feels woefully inadequate.  Why is there nothing out there that actually seems to describe Eila?  How do we know the right plan to move forward with?  How do we even know how to begin to evaluate that?  How will we know that we have truly done all we can for her?

From Mar/Apr2015

We are currently reaching out for advice/opinions from other oncologists (Memorial Sloan Kettering, Dana-Farber, St. Judes, Children's National) and hoping that they come back with a solid plan for Eila.  We have a promising lead on a very experienced surgeon that we intend to follow up with (and he's even considered "in-network" for our insurance, although he's 6 states away - thank god for the wonderful insurance available through OSU).  But we feel like we are still completely lost with nephrology.  We have had no real communication with her current doctor since we found the new tumor, and our last appointment with her left us feeling very frustrated (and that was before we knew our problems were changing).  It feels like we are the only ones who think talking about her kidney is also important right now.  Thankfully my Uncle Ron (a former kidney transplant surgeon) has been helpful in answering questions for us.  But we intend to make more phone calls about this and hopefully will find more information to help us feel better about her options.  We go back up to Portland on Monday to talk and plan to move forward ...



(Personal side-note: For those who know me well, you know I would never be described as an emotional person - I blame my stoic Nordic blood.  But I am scared, frustrated, angry, and so very sad right now.  So this pseudo-anonymous blog provides an outlet for me to express my feelings, and I really need that right now.  It also provides a way for me to document this all for our girls, since they're too young to really understand all that's happening, and a way to keep you informed.  Thanks for checking in and thanks for thinking about and praying for Eila.  We love her.)

MRI & more information

Today we returned to Doernbecher for a MRI.  Everything went well and the new images will be very helpful for the doctors.  We now know that the lump is on the upper end of Eila's right kidney, the same area that her second tumor was -- this obviously points to a recurrence of Wilm's tumor.  Although the doctors referred to it as small, we were shocked at how big a 2 x 3 cm "lump" is on a 7 cm kidney.  From the MRI, it does not appear to be a cyst (it does not appear fluid-filled).  Although everyone (including our doctors) acknowledges that the lump is probably cancerous, they are hesitant to officially call it that.  This is primarily because the implications of cancer treatment (removing part or all of the kidney, chemotherapy, and radiation) are going to greatly impact the rest of Eila's life.

So what's next for our precious Eila?  There's a lot of complicated decisions to make, and they involve balancing our desire to treat the cancer while preserving Eila's kidney function if possible.  Her oncologist is working on getting input from doctors near and far -- luckily since Eila isn't sick right now, so we have a little time (a week or so) to look into all these issues more carefully.  Eila only has so much kidney remaining after the partial nephrectomy with the second tumor, so balancing the ability to save kidney tissue while eliminating cancer is scary and complicated.

The first decision lies with surgery, do we do it?  If no, we assume it's a tumor and we start chemo.  Because it's a relapse, this will be a much more aggressive chemo plan than she has done previously.  Can we do it?  If yes, we have a few choices to make: 1) nephrectomy, 2) biopsy, or 3) resection (partial nephrectomy).
1) A complete nephrectomy (fully removing the kidney) isn't our first choice because it means we've jumped Eila to renal failure (there's no kidney left!), she'll need dialysis and a transplant.  A transplant becomes complicated if we learn that it is a tumor because she'll have to undergo chemo and that delays her eligibility for transplant for 2 years.
2) A biopsy (retrieving cells from the lump to test for cancer) is scary because it leads to more extreme choices.  If cancer cells are found, it means her cancer treatments need to be expanded to include radiation (something we've always felt lucky to avoid before).  If no cancer cells are found, we just watch the lump VERY closely and monitor kidney function MUCH more closely. 
3) A resection will also allow cells to be tested for cancer.  If cancer cells are found, she starts chemo but we get to avoid radiation.  The chemo will have to be selected very carefully to determine the strongest but most kidney-friendly options available.  If no cancer cells are found, we increase her kidney monitoring.

I wish I could tell you there was an option 4, none of the above, but I have to accept this horribly scary new reality we're in.  Out of the choices here, I think I'm hoping for #3.  But it's hard to be hopeful when I feel like my hopes for Eila to have a relatively normal life have been ripped away in one quick flash.  Now all we can do is try to find the BEST pediatric surgeon out there and pray that he/she believes that we can save some of Eila's kidney so that we can fix just one problem at a time.

The other shoe drops

Today was annual appointment day for Eila and it was a full day of appointments: blood work, an echocardiogram, check-up with nephrology, an ultrasound, two chest x-rays, and check-up with onocology.  The day started out straightforward with blood work and the echo.  She had a little break, so we rode the skybus and ran around in the grass at the bottom of the hill.  Then we waited around for nephrology (and colored pictures).

From Mar/Apr2015

All looked good there too; we were excited to learn that Eila gets to stop taking her "juice medicine" (helps the kidney balance the acidity in her blood).  Once her ultrasound and x-ray were done, we were able to grab something to eat (around 3:00 in the afternoon!).  Finally, we went up to the 10th floor for oncology, and that's when everything changed.

Eila's ultrasound reveled a new lump on her right kidney, approximate 2 cm across.  We were shocked to receive this news, as was our doctor -- Eila's last chemotherapy treatment was over two years ago.  This was supposed to be a milestone checkup -- patient survival rates increase dramatically if they can hit the two year mark, and most of them do.   So what does this mean!!   It feels like the whole world has sunk into a fog and there are so many new questions and fears: chemotherapy, radiation (!!!!), dialysis, kidney transplant ...?

Given Eila's history, it is very likely that she has a new tumor but oncology wants to hold out some hope that it could be something else (like a cyst).  We need better imaging, so she'll be returning to get a MRI.

Church basement

Experimenting with roller skates in the church basement:

Spring newts

Eila and I realized that it's Easter time, so it's also newt time!  She was so excited to go and find them, and luckily we had a beautiful, sunny weekend to do it.  So we set out on the short hike to the pond, Eila slipped off her shoes, and started catching the wiggling little guys.

From Mar/Apr2015

From Mar/Apr2015

From Mar/Apr2015

Unfortunately Annikka wouldn't come along this year because she has become too afraid of the poison from the newts.  Yes, these newts are poisonous, but only if you eat them - and we are ALWAYS careful about what we touch (and don't touch) and washing our hands after we hold them.  But as we know, Annikka tends to take these kinds of warnings much more seriously, so she passed on the newt pond this spring.  Maybe next year she'll come back again.

Coloring eggs

From Mar/Apr2015

From Mar/Apr2015

From Mar/Apr2015

From Mar/Apr2015

7 going on 17

Back from our mountain vacation, Annikka and I went to get the studded tires off the car.  While waiting around, Annikka started reading magazines and I suddenly felt like I got a glimpse of my future teenager!

From Mar/Apr2015