New plan

Eila and I are very happy to be home and, after the morning with doctors, are looking forward to the weekend all together.  Today we met with Dr. Thomas and learned about the new plan for the second half of Eila's treatment, radiation and chemo.  He helped explain more about the "spill" at surgery, that it was just microscopic evidence at the margins.  Basically, he said that it wasn't that Eila's tumor was cut in half, that the surgeon really did his best to get it all out in one attempt but her tumor didn't end with a clearly defined boundary (it has microscopic cells that extend pass the visible tumor).  So Dr. Erhlich was trying to balance taking all the tumor cells against preserving as much kidney as possible, a few diffuse cells were left behind initially -- this created her "spill".  So while this means we have to add radiation to Eila's treatment, it will only be applied to the area of her original tumor.

Today we also met with Eila's new radiation team, learned more about how her radiation will go, and got things set up for next week.  She will need 1 treatment that is spread out over 6 days (meaning she gets one exposure a day, Monday to Monday), for a total dose of 10.80 grays (I don't really understand grays, so I'm not going to even try).  Although her tumor has been removed, the radiation will target the original tumor area (before it shrank from chemo) plus a 1 cm margin.  This area will include her kidney, liver, some intestines, and some ribs but it will NOT include her spine, any long bones, or right ovary.  All of that sounds better to us, less impact on her future growth since her spine and long bones (legs, hips, arms, etc) aren't included.  The exposure to her kidney is probably the biggest issue for her, but what can you do she's got a kidney tumor.

From July/Aug2015

Today she got to see the room she'll be in for radiation and had a CT scan to give the doctors images they'll use to line up the "lasers".  Hopefully she'll be able to lie still enough during treatments so that she won't have to be sedated; they say it doesn't take long but she has to be perfectly still.  So she practiced being a statue today.

From July/Aug2015

The other part of today was learning more about Eila's chemo plan going forward.  With Eila's first tumor, doctors realized that her left kidney had nephrogenic rests, which significantly increases her risk of developing kidney tumors.  So now that she's had to deal with tumors #2 and #3, we've decided we need to include new drugs going forward: cyclophosphamide, etoposide, and carboplatin.  These new drugs are stronger than ones Eila has received in the past and will require hospital stays for chemo.  The new drugs also mean new risks and this is kind of scary to us, but there is evidence that increasing the chemo regimen may inhibit those nephrogenic rests in her kidney from becoming new tumors.  We are all for increasing Eila's chances of not developing another tumor, so we're asking her to be brave again as we begin this new plan.

I know next week's radiation and chemo will be here before we know it, but we're looking forward to a restful and fun weekend with Annikka.  And then we'll try to settle into a new normal as Eila's into the second half of chemo and will get weeks off between treatments (one week of chemo, 2 weeks to recover).  If all stays on schedule she'll be done before Thanksgiving.

Homecoming

I just got off the phone with Dana.  She and Eila are getting ready to drive to the Detroit airport.  [Actually, Dana is getting ready.  Eila's asleep on the couch.]  I am going drive up to Portland to pick them up after work tonight, and then tomorrow we'll have our big meeting with the doctors at OHSU.  We had a rough start to the week, but Dana and I are doing a lot better now that we had some time to digest things.  We are in a pretty good mood and ready to move on with what we have to do.  Thanks to everyone who has reached out to us over the past few days.  It means a great deal.

I'm excited to have the family back together again.  Annikka, who has been without her mother and sister for about a month (!), will finally get to see Dana and Eila tomorrow afternoon. We are going to show up for a play that Annikka has been preparing for all week at art camp.  Should be quite a scene. 

Fun in Ann Arbor

Eila and I had a couple of days to spend in Ann Arbor making sure everything was still okay before flying home.  We were very fortunate that friends from Corvallis had moved to Ann Arbor and let us stay at their house for these waiting days.  Eila doesn't quite have the activity level she normally has, but we did get out and do some fun things.  On Tuesday we went to the Hands On Museum and got to explore all kinds of things.

From July/Aug2015

From July/Aug2015

From July/Aug2015

Then on Wednesday we went to the University of Michigan's Natural History Museum,

From July/Aug2015

celebrated my birthday by getting our nails done,

From July/Aug2015

From July/Aug2015

and went out for dinner.

From July/Aug2015

Eila told our waitress that we were celebrating my birthday so the waitress brought Eila her own special drink, her first "shirley temple".  Then at the end of our yummy dinner, she told us that another customer at the restaurant wanted to buy our dinner for us!  Wow, the kindness of strangers!  We had a wonderfully and special evening out.  And now we're getting ready to fly home, meet with DCH doctors again, and see Annikka & Joel.  Glad this part is done.

More surgery results

Hi everyone.  Joel here.  Yesterday we received good news and bad news.  The good news was that Eila and Dana were finally discharged from the hospital.  They will be staying in Ann Arbor until Thursday night when they’ll fly home.

The bad news has to do with Eila’s chemotherapy from here on out.  Prior to the trip, Dr. Thomas (our oncologist here in Portland) mentioned that he expected that we may be able to lower Eila’s chemotherapy dose after surgery, perhaps eliminating one drugs.  He said he and the other doctors (i.e., our surgeon and the oncologists throughout the country with whom we have consulted), would have to reconvene after the surgery to develop her post-surgery plan.

Yesterday we received an email from Dr. Ehrlich (our surgeon) recommending that we maintain her current chemotherapy and add radiation therapy.  Dana and I were shocked and confused to see that radiation therapy, something we have been so thankful to avoid until now, has suddenly been added to the mix.  As many of you probably know, radiation brings with it a whole new set of problems and concerns, including: (1) renal failure (radiation damages the very kidney we’ve been working so hard to save), (2) it increases Eila’s risk of developing other cancers, (3) it can mess with Eila’s ability to have children later, and (4) it apparently can be very painful for Eila.

So if the surgery was a success, which we were lead to believe, why are we going to have to introduce a new harsher treatment into Eila’s regiment?  Unfortunately, since receiving yesterday’s email, performing some of our own research, and talking on the phone to Dr. Ehrlich, it now looks like Eila’s surgery was not the success we thought.  The entirety of Eila’s tumor was removed, so that’s good.  However, it took them two attempts to do so, which is problematic.  In the first attempt, the surgeon determined that the margins were not clean (i.e., cancer cells were at the edges of the sample so there was still remnants of the tumor in the kidney), so they had to go back and cut out the remains of the tumor (which they did). 

Dr. Ehrlich told us they’d had to go in twice when we met with him after surgery, but we understood the surgery to have been successful.  As far as we understood the downside of having to go back and remove more was that Dr. Ehrlich cut into the kidney’s the collection system causing a urine leak that prolonged Eila's hospital stay.  Ultimately this leak is repairable but it will take more time than originally expected.

Well it turns out that the two-step removal affected more than Eila’s collection system, it also triggered an oncological “spill,” which means that open portions of the tumor were exposed to Eila’s body (albeit briefly), increasing the chances that microscopic tumor cells “spilled” into Eila’s abdomen.  It doesn't sound like there's any way to know if a spill actually occurred, so the standard protocol is to add radiation therapy.  Yesterday’s email was the first Dana and I had heard of a “spill” or the potential need for radiation therapy.

Now, with a clearer picture of what has happened, our doctors are talking among themselves to reach a consensus as to whether radiation is in fact necessary.  We have a meeting on Friday morning in Portland with Dr. Thomas to hear the final recommendations.

This new understanding of the surgery has been very hard to process and we are left feeling a bit misled.  We are also very sad and frustrated, partly because we just spent two rather hard and stressful weeks in the hospital under the impression that everything had gone well, but mostly because of what it means for Eila moving forward.  Radiation and everything that goes with it present just one more obstacle that will make it harder for Eila to ultimately be Eila. 

We love her very much. 

Day Twelve at UM

It was finally Eila's last day!!  She was discharged this afternoon.  While it's nice to get to leave the hospital -- Eila's comments about being back outside were hilarious, it was as if she forgot it was summer -- it's also a bit intimidating to know that I'm now in charge of her care.  Since her surgery went deeper into her kidney, she's coming home with more issues than we would have hoped.  Urology sounds confident that she will heal, but they really can't say how long it will take (then you add chemo back into the mix and all bets are off).  Eila is of course taking this all in stride, she is so incredible.  We will spend the next couple of days in Ann Arbor making sure everything is going well before flying home to see Joel and Annikka on Thursday.

Day Eleven at UM

Wow, it is Eila's 11th day in the hospital ... but at least I'm also writing that it was an easy, slow Sunday.  Eila's feeling fine overall, her biggest complaint was that she was incredibly itchy (like bringing her to tears because it was so hard to resist itching itchy).  She got some benadryl and her incision stopped itching within 30 minutes.

Today also slowed down a bit because Daddy went home.  Although she isn't here, this has been a very long trip for Annikka and it was time for someone help bring back some level of normalcy in her life.  While we were sad to see him go, I'm sure there will be hugs and tears of joy at home.

From July/Aug2015

And today Eila's penrose drain also appears to have finally slowed down a little - YAY!  For the last ~24 hours, it drained 175 mL (approx. 7.3 mL/hour).  In the ~24 before that, it drained 247 mL (approx. 10.3 mL/hour).  We're really hoping that the doctors will see this as good news tomorrow morning.  And although I know it's not enough so that Eila will be leaving Michigan with fewer tubes attached, it's progress in the right direction and I hope her numbers stay down tomorrow.  Still not entirely sure when she'll be discharged but we're optimistic it will be the beginning of this week.

And now it's the two of us ...

From July/Aug2015

Day Ten at UM

From July/Aug2015

Today was a good day at Mott's because Eila was feeling good and Taisto, Elin, Aaron & Kristin came to visit.  It was a fun day showing them around the excitement of the children's hospital.  They did crafts together (painting of course),

From July/Aug2015

played in the "game day" playroom,




watched movies (Big Hero 6 again),

From July/Aug2015

and had a pizza party, complete with milk shakes and cookies.

From July/Aug2015

From July/Aug2015

No new news on the doctor front though, just waiting to see if her penrose draining will decrease.  Overall the output seemed steady again today, but we're still optimistic that she might be discharged the beginning of next week.

From July/Aug2015