Home Again, Home Again

Julia got discharged from the hospital this morning and after driving home very slowly through the snow and slush we made it home. We were greeted with a family of snowmen in our front yard. Julia's friend Brinley and Brinley's mom stopped over and built snowmen with help from Finn and Co. It was a nice sight to come home to.

So the next 48 hours for Julia are still all about surgery recovery (she's technically had three in the last three weeks). Pain management, comfort, and food and liquid input and output.

Over the past five days, there's been a fact that we learned during the diagnosis that's been on my mind. That fact is: When they put in the drainage tube to drain what they thought was an infection, it potentially spread cancerous cells outside of the tumor. And because of that, Julia is considered to be at stage 3 whereas it probably would have been at stage 1 if they had operated to remove the tumor rather than draining. (Stage 1 for Wilms' tumor means completely contained while stage 3 means exposure to other parts of the body.)

After this all sunk in, I had some conflicting thoughts. I was trying not to feel disappointed and mad that something else wasn't done. I told myself that it didn't matter - it was all in the past, couldn't be changed, and rather than spending energy and emotion on things that couldn't be changed, I would focus on what needed focusing on right now.

I became okay with that rationale over the next few days, but felt even better about it all after a conversation with one of the doctors. Julia's presentation of her Wilms' tumor was not normal. In most Wilms' tumor cases, a child gets admitted with a large bulge in their abdomen from a rapidly growing tumor. Julia's case was found out about because of the first hospital stay when the drainage tube was put in. If that pain had never mysteriously started, Julia would still be feeling fine but would still have a growing tumor on her kidney. By the time it was found, it could have spread or done all sorts of nastiness inside of a six-year-old's body.

Another interesting thing to note: In the U.S., the normal course of action for a Wilms' tumor is to remove the entire kidney. Julia's didn't go that route because of the unusual presentation and path that led her to surgery. Our oncologist even told us that a doctor approached her to question why the whole kidney wasn't removed. In Europe, the way a Wilms' Tumor is treated is exactly how Julia's was: removal of the tumor, but leave the kidney. There isn't really a right or wrong, just different ways of doing the same thing that can reach the same conclusion.

The Firetruck

On the day of Julia's kidney surgery, Finn went to Dawn and Jamie's house for the evening. As I was headed home from the hospital, Dawn brought Finn home to put him to bed. When they arrived at home, there was a giant toy firetruck on the front steps.

"Is this your firetruck, Finn?" Dawn asked him.

"No..." he said, "But maybe someone wants me to have it?" He does this cute thing where his voice gets higher at the end when he's asking a question. So if you can hear those words in the little Finny voice, it's even cuter.

He loves his new firetruck. I'm assuming it was left on purpose. There wasn't a note on it, so we don't know who left it. We would love to say thank you to whoever did, but if they want it anonymous, that's cool.

It was neat because it brought a huge smile and a laugh when Dawn told me the story and some more the next day when I told the story to Mandy at the hospital.

Today's Schedule

It was my turn to stay overnight at the hospital last night. Things went pretty well, aside from the normal routines of being woken up every few hours to be poked at by a nurse. Much love to the nurses, it just makes for choppy sleep.

Julia and I have been up since 6:00. She played her DS for awhile but it was hard to do with both hands IV'd and full of tape. Then we just sat and chatted, lounging in our hospital pjs.

The plan for today is to get a CT scan this morning. Some kids don't hold still for those and need to be sedated, but Julia's had multiple ones over the past few weeks and has done great with them every time. This particular one is a radiation simulation. The results will be used to calibrate her radiation therapy (starts next week) with her body so that when she comes in, everything will be programmed to hit in the all the right places.

This afternoon she is undergoing a minor surgery to install her chemo port. The chemo is scheduled to start next week too. The port is a little piece of metal put in under her skin on her chest. It is where they'll inject the chemo each time rather than needing to start an IV.

The plan at the moment is that the radiation and chemo will both be outpatient.

The Background to the Path Forward

On Friday, October 22nd, 2010 Julia came home from school complaining about a stomach ache. That evening we realized she also had a high fever and we assumed she had a some sort of stomach bug. Her stomach ache seemed to come and go during the day Saturday, but still had a fever. We became concerned about her “stomach ache” when we realized it was more a pain in her side or back rather than a nauseous feeling. We called the River Falls Clinic's on-call doctor Saturday night and he said to bring her in in the morning if the pain is still there. The pain was still there on Sunday morning so we took her to the clinic. They did a CT scan to confirm or rule out appendicitis. The images did rule out appendicitis but showed, what looked to be, an abscess on her kidney. The doctor sent us on our way to the emergency room at Children's Hospital in St. Paul.

Julia was admitted to Children's on Sunday, October 24th. On Monday a surgery was performed to insert a drainage tube into the kidney bubble (Julia always referred to it as, “her bubble”). The doctors were surprised that rather than pus, only blood came out. There was also a surprise when none of the urine or blood samples grew anything, i.e. no sign of infection. The plan was then to leave the drainage tube in for a few days to see what came out. The blood flow from the tube soon tapered off and so it was removed on Thursday. Also, starting on Tuesday, Julia had most of her normal personality back, fever gone, and pain gone, and on Wednesday, besides the IV's attached to her, you wouldn't even know anything was wrong with her.

Julia was released from the hospital on Friday, October 29th. The plan was to have a followup ultrasound the next week to make sure the mass was getting smaller or to discuss other options if it wasn't. The ultrasound was done on Thursday, November 4th and we were able to see the same pediatric urologist who had been part of Julia's team of doctors the week before. He explained that the mass was still approximately the same size and that surgery would be needed to remove it. The plan was that the mass would be biopsied and sent to the lab to be looked at and an initial conclusion made while surgery was still going on. This would allow the entire kidney to be removed if need be.

The two-hour surgery was performed on Tuesday, November 9th, by the same pediatric urologist who we had been talking to from the start. The mass turned out to be a Wilms' Tumor, a form of kidney cancer that only affects young kids. For as rare as it is (500 or so cases per year in the U.S.) there is quite a lot known about it and continuous ongoing studies add more knowledge to the pool every year. Most cases of Wilms' Tumor have a very high survival rate, but at this point we don't know all the details, so we don't have an exact prognosis yet.

Click here to see the most up-to-date info: http://kauthfamily.blogspot.com/

World's Lamest Blog Post

Halloween:
http://www.facebook.com/album.php?aid=2082109&id=1074972765&l=a996632ee3

Kalahari trip:
http://www.facebook.com/album.php?aid=2082106&id=1074972765&l=da73d8ecaa

Julia in the hospital:
http://www.facebook.com/album.php?aid=2080744&id=1074972765&l=36cdc43235

Other:
http://www.facebook.com/album.php?aid=2079347&id=1074972765&l=7136dfb04a

Poetry of a Good Day

Foreground, background, Finn

Blue green juxtaposition
Unplanned but lovely

A curious sound
Looking to the trees for birds
The source: foot-level

Man-made and rusty
Arachnid-made, silky, strong
Both useful structures

Footsteps to unknown
Daily crossing life's bridges
I'm optimistic

August, 2010

We've had a really busy August. We went to Chicago earlier in the month to celebrate Julia's birthday by going to Shrek the Musical.

We stayed with Jason and Tracie while in the city and they took us to Millennium Park. The Bean, as it's called, was really cool. I especially liked the way the Chicago skyline looked in the reflected surface.


While walking around downtown, we stopped and watched a few street performers. One was a man dressed and painted in silver. He stood or sat completely still like a statue but once in awhile would move and do something funny. Mandy told Finn to go sit by the statue and he didn't think twice about it. A bunch of people were watching him do it and he had no idea why he was getting all the attention. When he looked over at Mandy while sitting right next to the guy, the man turned his head to look right at Finn. Finn turned back, saw him, and made a horribly frightened face and ran back to Mandy. I got a picture of him sitting there, but I wasn't ready for the next part. Finn was a little leery of being so brave after that.

After playing outside in puddles, Skippy does her best drowned rat (or maybe fox) impression.

As rough as he sometimes is with her, I'm surprised at how much Skippy still snuggles up to Finn.

Back on Track - Skippy

The second installment of blog posts aimed at getting me back on track.

In the beginning of May we got a puppy. Skippy is a Pomeranian. She started out as a half-pound ball of fur, but she's changed a lot in the last few months. These pictures are all from the furball phase.

But first! If you dare try to harm our pup, you'll have to deal with... Weapon Master Finn!


When we got her, she was barely eight weeks old. Below is Julia holding her in the car when we picked her up. Following that are more pictures from Skippy's first day at home.




Skippy is a good sport about being played with by the kids.

She's also enjoys snuggling.


Even though it's cute, we don't let her sleep on the steps because we're afraid someone won't see her and step on her.

She does this adorable thing where she looks at you and cocks her head really far to one side.

So much for not eating meat!

We found out that Grandma Ruth's Pomeranian, Maggie, is Skippy's half-sister. So Skippy may look like this in a few short years.

We really don't make Finn sit in Skippy's pen, but we might if he used his weapons from the first picture too often.

Back on Track - April

After fighting a month-long battle with a computer virus (on both computers), I got behind on keeping up with pictures. After that, my inactivity in blogland kind of snow balled. A few quick blog posts is my attempt to get back on track.

Finn turned three in April.


Some things go beyond a mutl-generational gap. One of those things is the love of donut holes.

And the willingness to fight for the last one. Joking aside, it's great watching Finn and Great-Grandpa Ronnie interact. From early on, those two have had a great time together.

Peace is helping Finn get his truck.

Julia definitely has an affinity for art.

February, 2010

Family shot, with Finn still recovering from his nap.

For my birthday we broke out the fine dishes and thankfully none actually broke. If you look closely at the cake you might be able to figure out Mandy's clever way of showing my age.

The kids got some special Valentine's Day treats. Finn shows them off while Julia phones to give a thanks.

Julia posing in pink with a homemade snowflake.

A red-cheeked Finn takes it upon himself to get his own snack. He could do worse than pretzels.

Julia shows people what a real tea party looks like.

Plenty of options for dress up can lead to some interesting costumes.

Julia plays some PBS Kids games online on our new office desk.

Finn and Mandy baked some really big monster cookies.

We all enjoyed the warming weather with a nice walk along the river.

Sometimes we all need a little snuggle time.