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

Day Nine at UM

I can't believe I'm writing about Eila's 9th day in the hospital, this is exactly what we imagined.  But I am happy to be able to report that Eila is doing well, we're just waiting for her to stop leaking.  To help us make it through another weekend at the hospital, Auntie found a friend of a friend who stopped by with a special delivery, a bag full of books!  Leann was very nice and helpful, and she even works here at the hospital. 

From July/Aug2015

Eila also made two trips down to the 2nd floor today, once to go out to the garden (first time outside in over a week) and once to visit the family center.  Friday afternoon is cupcake time, and who can pass up a cupcake.

From July/Aug2015

The family center also has a set of fairy doors to find and a dinosaur to ride, it was a nice little adventure in her afternoon.

Day Eight at UM

Today was an easy day at the hospital.  Eila was taken off IV fluids but her output is still being closely monitored (her catheter and the bag over her penrose drain).  Otherwise things are going well and it is nice to have days like this: she is clearly not in any pain, she is able to get up and do things, she is in good spirits.  Unfortunately her urine leak isn't healing as quickly as was hoped, and the doctors would like to give it more time.  So we have no set timeline right now, just taking things day by day.  Which means we'll keep visiting the activity room and working on more painting projects.  Here's the collection that Eila's amassed so far.

From July/Aug2015

I'm a little embarrassed to admit that I had not idea she loved painting so much, but am very happy that the oncology activity room has so many options for her.

Day Seven at UM

Last night was uneventful and everyone slept well.  We even all went back to sleep after the doctors rounded this morning.  Eila is still in good spirits, and the nurses comment on how easy she is to take care of.  This morning she had an x-ray to check on the placement of the stent -- all looked good.  And she had an ultrasound to see that things were on the right track around her kidney (apparently there was evidence for a small accumulation of fluid there that doctors wanted to look at again) -- all looked good.  The pathology from her tumor came back: clear margins (once the doctor took more); no cancer in the lymph nodes; favorable histology.  Good, good, and good!

Unfortunately Eila's blood counts were still dropping so she needed another transfusion today.  Hopefully her numbers will be better tomorrow and that will be her last transfusion for a very long time.  The drainage from the penrose near her kidney appears to be about the same to us, but maybe we'll find out that it is actually decreasing in volume.  Now that the bag is working better again, we should be able to track that better too.

Eila was very happy that it was dog day again on the floor and she got to meet Romeo.  He was good at shaking hands and eating treats.

From July/Aug2015

Otherwise, it was a pretty average day at the hospital (movies, painting, stories, stickers, walks, etc) for us.

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The overall message from the doctors is that she's making good progress.  If her blood counts are good tomorrow, we think it's just her drainage that's an issue.  And the more they talk to us about that, the more it sounds like there's flexibility in it.  Not sure what that means yet, maybe we'll learn more tomorrow.

Day Six at UM

After the traumatic start to our day (at least traumatic for Joel & me), it actually settled down quite a bit.  Eila slept until 2:45 pm!  Poor kid was so exhausted from the night.

From July/Aug2015

The rest of the day was quiet and she had an easy night, hanging out watching movies and playing games.  She even took the Jeep for a spin to the ChildLife dinner at the other end of our floor.

From July/Aug2015

Our awful night

Last night was our longest night in the hospital, and possibly the longest I can remember having for quite some time.  When we returned from Eila's stent placement procedure, we realized that the drainage bag was leaking fluid.  This was right at the changing time for the nurses, so she got a whole team working on getting the old one off, cleaning her up, and carefully placing a new one.  While eating dinner and watching movies, we realized there was a small leak still but we hoped it would be manageable.

At 1 am, we finally had Eila all settled down for the night (I know, I know, we're still on West Coast time), and we were all exhausted from the extra excitement of the day.  At 1:27 am, Eila called out that she was too wet to sleep, so we got up to try to help.  When we got to the side of her bed, our 5 year old was lying in a pool of blood -- her blood!!  I don't think I can even begin to describe the instant fear and stress that exploded inside us, and the only thing that kept us from going completely off the deep end was that Eila wasn't panicked or stressed, just uncomfortable.  We called the nurse in, who immediately called the head nurse and the surgical resident.  One potential risk that had been mentioned to us was thrombosis (a blood clot that would cut off the supply to the kidney), so we were concerned about losing her kidney.  The surgical resident took photos of the bag/bed and left to contact the fellow.

Her drainage bag was filled with clotted blood.  Her gown was soaked in blood.  Her bed sheets were red with blood, and now as we were finally changing them, there was a pool of blood under her that we soaked up with towels.  It felt like so much blood, yet Eila was still acting normal just tired (by now it's about 2:30 in the morning).

The resident returned with instructions on lab work to order and more information for us.  They drew blood to check her blood counts, her kidney function, and her clotting times.  We waited and worried, Eila fell asleep.  Her counts were down some from last week, but still within a normal range -- no transfusion needed.  Her kidney levels (creatinine, etc.) were within the normal range.  Her clotting time was within the normal range.  The fellow was happy with these results, thought that it was likely that she had a hemotoma (a collection of blood that had pooled near her surgery site) burst, and said we just needed to keep an eye on things -- the team would round by 7 am.  By now it was 4 am, Eila was sound asleep and the resident suggested that we get sleep too.  The nurse said she would could in every hour to check on her.

We did finally get a little sleep and talked with the surgical team at 7 during rounds.  During the last 3 hours, Eila had another smaller surge of blood that created more clots in the bag and a mess on her bed (but not as big as the first one, which the nurse categorized as "medium").  They needed to do a lot of feeling/pushing on her belly and changing the sheets, all of which caused Eila pain.  She got more pain medicine and the fellow ordered another round of blood work and an ultrasound to be sure the problem was resolving; she said everything felt soft so she wasn't too concerned.  She also explained that Eila was outside of the window of risk of thrombosis (that was more at the time of surgery).

The pain medicine helped, the ultrasound showed nothing of concern, the blood work has slightly lowered numbers but still within range, and there hasn't been any more large surges of blood.  The urologist thinks that the stent made have helped disturbed a hematoma that came out through the penrose (drainage tube), but we'll continue to watch her.  It is 12:37 pm as I write this and Eila is still sleeping.  I'm glad this night is over.

Stent placement

Luckily Eila was fit into the urology surgical schedule today.  We went down to the surgical prep room around 4:30 this afternoon.

From July/Aug2015

It was a very quick procedure, the anesthesia took much longer than the stent.  Dr. Wan thought it went well, and now they will monitor the output for the next 48-72 hours.  The hope is that she fills the catheter bag and the drainage bag slowly dries up.  The stent takes away any resistance to the bladder, so the urine should preferentially exit through her bladder instead of the hole in her kidney.  This will allow her kidney time to heal, and the stent will be removed in 3-6 weeks (depending on how she's doing). 

Her initial wake up was a bit rough, crying a little but no yelling.  And now that the procedure is over, Eila got to eat again.  We had order a dinner to be delivered after surgery (spaghetti) and she had requested a cupcake (I had walked to a bakery this morning to get her one).  It was great to see her eating again.

From July/Aug2015

Although this is not the first time Eila's had a catheter, she immediately commented on it so this could be a long couple of days.  But hopefully tomorrow will be a relaxing day hanging out at the hospital watching her drainage bag dry up ...

Day Five at UM

The surgical team is very happy with how Eila's doing overall, she even got to have a "gentle" dinner last night (scrambled eggs, toast w/honey, banana, and mashed potatoes).

From July/Aug2015

Unfortunately today she's had to temporarily suspend her eating again ... The fluid in the drainage bag hasn't decreased enough, so she is getting a stent placed today.  (Sorry for the graphic picture, but it might help you understand the problem better.)

From July/Aug2015

It's a pretty simple procedure but requires anesthesia, so she needs an empty stomach.  A stent will be placed between her kidney and bladder to create an easier path for urine to exit.  This will hopefully stop the leak from her kidney, and they'll be able to remove that drainage tube soon.  She will have to have the stent removed in a few weeks (Dr. Ehrlich will help us find a doctor at Doernbecher to do it).

Day Four at UM

Last night we ended our day with a "car ride" to the 12th floor to look at the lights of the city.  We had passed these cars during our walks in the halls and talked to Eila about how much she liked them when she stayed at the hospital when she was younger.

From July/Aug2015

This trip was also a very important milestone because Eila tooted!  She was excited to tell the nurse when we returned to her room, and it meant that the doctors gave her the green light to start eating clear liquids today.  So she started her day with jello and had soup broth for lunch.

From July/Aug2015

It's always funny going through this phase of recovery -- Eila thinks of clear liquids as snack food, and is already talking about having mac'n'cheese and pizza.  Fingers crossed that tomorrow will bring real food.

She has also finally ventured into the activity room today.  She has really enjoyed painting and it's been really nice to have some thing other than walks to break up the day (and it also includes a walk).

From July/Aug2015

From July/Aug2015

So she's made progress in one area but they are still watching her drainage tube.  Today it has changed from an orangish-pinkish fluid to a deeper redish fluid.  The doctors are concerned about this change and are continuing to measure the output.  It has decreased since her surgery but stayed about constant for the last day.

Day Three at UM

This morning started with more good news for Eila ... she can have gum and lollipops!!  So I went out first thing this morning for tea (for me) and treats for Eila.

From July/Aug2015

Any one who knows Eila, knows that she likes gum :)  And apparently there's some reports that chewing gum may help get your stomach working again, so fingers crossed that tomorrow could bring more good news.

From July/Aug2015

But in case the gum isn't the magic ticket to eating again, we are continuing to encourage (i.e. force) Eila to walk more.  She's already gone on 2 longer walks around the floor and 1 short walk to the bathroom.  I think our goal is to double this by the end of the day.  Getting in and out of bed is still hard, but she's really working at it.  And we are doing our best to manage her pain.



Now, as best as we understand as Eila's incision continues to heal, we are waiting for Eila to toot so they know her intestines have settled back into place -- then she can eat.  We are also waiting for the drainage tube they placed in her side to slow down (but we finally have a bag on it that isn't leaking so that's been helpful).  The doctors tested a sample of that fluid yesterday and it showed there's a little urine in it, probably leaking because of going deeper into her kidney to remove all the tumor tissue.  They will continue to watch this leak for the next few days; if it still has urine in it, she will need an additional procedure to help redirect the urine through her bladder and give her kidney a chance to heal that spot.

In the mean time, we are thankful for small improvements.  And we'll continue to watch movies, go for walks, and play games.

From July/Aug2015

From July/Aug2015

Day Two at UM

When the surgery team did their morning rounds, we found out that Eila would get her catheter out.  This was both good and bad news to Eila.  Who would want a catheter, right, so that was the good news.  But that would mean that she'll need to start getting out of bed to use the bathroom, she wasn't excited about this.  She's made a lot of progress with her walking today, getting out of bed is the hardest part, and we are so very proud of her.

Papa and Alecia were back this morning for more grandparent time with Eila.

From July/Aug2015

She got the biggest "little pony" imaginable from friends back in Oregon.

From July/Aug2015

She did a few fun craft projects and walked around the oncology floor on a beenie baby hunt.

From July/Aug2015

From July/Aug2015

Although there have still been tears, we've also seen smiles today so things are getting better.  We'll keep working on moving and walking -- we've already planned our evening walk to a giant window that overlooks the city -- so hopefully she'll make it to the next phase soon.  She's really hoping to get the surgeons to agree to let her chew gum tomorrow!

Day One at UM

Today has been a day of making some progress, although not really by her choice.  This morning Eila got out of bed to sit with me and watch Big Hero 6.

From July/Aug2015

Then she was moved from the PICU to a new room on the oncology floor.  Papa and Alecia came to visit and cheer her on as she is trying to do more today (and by trying I mean she is being forced to move).

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She was able to sit on the edge of the bed and a huge, sweet Great Dane therapy dog came by for her to pet.

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And now she has also stood and taken a few steps!  All of this has happened through lots of tears and some yelling, but she did it ...  We all know that Eila isn't ever eager to try things that aren't her idea, so it hasn't been easy.  But we are all hoping that she'll begin to realize that she can do these things and that the pain won't last forever.

Out of surgery

Eila's out of surgery and we are with her again. The surgery lasted a little more than 4 hours, but everything went well. We met with Dr. Ehrlich and found out that she will be moved to PICU for a while. When he removed the main tumor and checked the margins, he had to go back and take a little more from one side and go a little deeper. This meant that he got into a urine collection vessel and it had to be sown-over. This decreased her urine output because a leak was created at that point. There is a drain in the area (a similar thing happened in her previous partial right nephrectomy) and they will be watching her output closely for the next few days. Unfortunately her blood counts were also a little low so she got a transfusion during surgery too. Even with all this, he felt the surgery went well had she still has about 80-85% of the remaining kidney (that started around 70% of a whole kidney).

From July/Aug2015

She is sleeping again now, luckily. When we first saw her, she scrunched up her face and said "it hurts where my cut is" - broke our hearts! The nurse immediately gave her more pain meds. She told us that "this is why she wasn't ready for surgery" and we told her it would slowly get better and that we would do all we could to help it feel better (like help her tell the nurses when it hurts). Hopefully we'll be able to keep a close eye on her pain in the PICU.

Surgery's started

Eila checked in this morning at 6:30 for her second right partial nephrectomy. After we talked to several doctors and nurses, she was wheeled off to the operating room in a wagon (her request) an hour later.

From July/Aug2015

By 8:36 her procedure was underway and she is doing well. Joel & I are hanging out in the main lobby, where food and drinks are allowed, with our hospital pager awaiting further updates. We were told to expect about a 3 hour procedure but that it could change depending on how her scar tissue is from her previous surgery on her right kidney.

From July/Aug2015

Thank you all for your prayers and messages of support. We are so very blessed to have such a wonderful community surrounding and helping us through this. It's always nice to know how much Eila is loved.

Pre-surgery fun

Today was our one day to have fun in Ann Arbor before Eila's tumor removal surgery tomorrow.  The day started with a visit to the hospital to meet her new team of doctors.  What I thought would be a quick visit turned into 3 hours, but we got her all set for tomorrow.

From July/Aug2015

Then we set off to do whatever Eila wanted to do ... and the first thing she picked was a petting farm.  She got to hold bunnies and ducks.

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From July/Aug2015

She feed carrots to sheep, llamas, goats, alpaca, and pigs.

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From July/Aug2015

From July/Aug2015

Next she had hoped to find a bounce place but instead we found a climbing gym, and our brave little 5-year-old climbed all the way to the ceiling (after only a few practice climbs).

 

From July/Aug2015

 

From July/Aug2015

She wanted spaghetti for dinner (her last meal for some unknown amount of time), and we completed the day with a bubble bath.  Next stop, surgery ...