Wednesday, December 29, 2010

Tuesday, December 28, 2010

2 Down 3 to Go

I am proud to say that Julia and I have made it through her first two chemotherapy treatments as an inpatient at Children's in Minneapolis. Hopefully the sleep tonight is better, but overall I think things are going well. Julia has had the opportunity to meet some other kids who don't have any hair and seems to be learning that they're kids just like her and there's nothing all that weird about it. Plus, people keep commenting on her beautiful hats! The flashier the better from time to time! We talked again today about whether she would like to have her head shaved to speed up the process (and so that she wouldn't have to deal with hair all over everything). She seemed interested for a while but then decided it's kinda neat being able to pull out chunks of hair at a time and have it not even hurt. I took a picture of her doing that - not sure if it will do the scene justice though. I'll have Torey put some pictures on the blog when he comes to the hospital next, with his laptop. Have a wonderful evening with sweet dreams...

Monday, December 27, 2010

Hanging Out

Christmas was a traveling whirlwind. Good times, but not a lot of free time. We arrived back in River Falls yesterday afternoon and got Julia admitted to Minneapolis Children's Hospital this morning before 9:00. I've got some good Christmas pictures, but since I'm sitting in a hospital room right now (feet propped up on Julia's bed, her in it playing her DS, and Mandy napping on the couch), I won't be able to post them to the blog quite yet.

As I posted about a few weeks ago, a test result caused the doctors to tweak Julia's chemo treatment to the stronger side. That tweaking will mean a number of week-long, daily chemo treatments, which are usually administered inpatient. We did find out that it is possible to do these treatments outpatient, as long as she seems be handling them fine. We aren't sure how we feel about that though. She needs two hours of fluid, then an hour each of two chemo drugs, then another couple hours of fluids. Driving everyday would mean those six hours for Julia plus another two or more in the car. Our plan right now is to see how things go for the first few days and then make a decision after that.

We're hoping that the worst part about this week will be trying to not get too bored. Since Amanda is off from work this week, she'll be staying more at the hospital than me. I'll be trying to squeeze in a few days of work. My dad has again agreed to spend the week hanging out with Finn and Skippy, even if it meant spending his birthday (today!) away from home. The plan is that I'll leave the hospital early enough this afternoon to make it back to RF in time for a three-generations-of-Kauths guys night out birthday supper.

I hope to update again within a day or two to let people know how Julia's handling the new chemo and with some Christmas pictures.

Monday, December 20, 2010

An Ingredient Away From Hummus

Since Julia's appetite is still taking a leave of absence, we give her a lot of leeway when it comes to what she wants for meals or snacks (she had a ham and cheese sandwich for breakfast this morning). She's always been a healthy, non-picky eater, so we know she wouldn't just ask for junk food.

For lunch a few days ago, she didn't show any interest in the couple of leftovers we were having so we asked her what she wanted. She wanted an English muffin. Sorry, we told her, we don't have any. Then she said she wanted garbanzo beans. Again we told her that we didn't have any and she would need to choose something from the leftovers that we had out. She got mad and stormed off to her room. A few minutes later she came back up and started rummaging through the cupboards. It wasn't long before she was standing, hand on her hip, giving us a dirty look, holding up a can. Garbanzo beans.
So she ended up eating a bowlful of room temperature garbanzo beans. She seemed quite satisfied with herself.

Tuesday, December 14, 2010


After a two-hour drive (rather than the normal one-ish) to Minneapolis, Julia had another round of chemo that she, again, handled great. Also, a number of her blood counts, after falling every week, are now holding steady or starting to rise. Finn came along for the first time too and so he was able to get some more firsthand knowledge of what his big sister does.

The oncologist shared with us the results of the final outstanding test and unfortunately they weren't favorable. Before I get into what the test actually found out, which isn't the easiest thing to understand, I'll explain what the results mean for Julia.

Julia's chemo treatments will need to be increased in strength. A couple of new drugs will be added to the regimen and because these drugs have potentially more serious side effects, they'll be administered as in-patient procedures rather than the out-patient procedures that Julia has been having. She will need to stay at the hospital for five days at a time while the new drugs are given to her once a day. She will most likely have four of these hospital stints over the course of her treatment and the first one will probably be during the week after Christmas. The weekly treatments in between these hospital stays will remain pretty much like they are now. Our understanding is that the chemo treatment will still have the same duration, ending at around the end of the school year. But, like we found out today, plans can change.

The test was looking to see if the cancer cells were LOH - loss of heterozygosity. LOH means that there is a mutation on two specific parts of the cancer cell's DNA and because of this there is an increased rate of relapse. And the doctors respond to a higher rate of relapse by giving different and stronger chemo drugs.

My understanding of the prognosis is this:
From looking at historical data, doctors can see that a Wilms' tumor kid with a favorable histology has an extremely good prognosis. A Wilms' tumor kid with a favorable histology and LOH (that's Julia) still has a very good prognosis, but it is different enough to be considered statistically significant. So once this data was studied and this difference noted, the hypothesis was to increase the strength of the chemo treatment (Wilms' tumor treatments have quite low amounts of chemo as treatment) to counteract the higher percentage of relapses that were seen with LOH cases. Studies are currently underway to test this hypothesis.

Julia was looked at to be part of one such study, but because of the drainage tube and the abnormal presentation of her case, she didn't qualify. Interestingly, all that means is that her data and outcome will not be factored into the final results of the study, but she is getting the same treatment as the kids who are participating in the study.

I read an interesting thing today which illustrated how today's cancer treatments are built on the knowledge gained from the outcomes of yesterday's patients. The prognosis of Wilms' tumor patients has been good and remained steady for the past 20-30 years at above a 90% 4-year survival rate. But what has changed is that during that time, the amount of treatment and the severity of the treatment has gone down significantly, i.e. the doctors have figured out that they can get the same positive outcomes without putting the patient through nearly as many hardships because this type of cancer responds very well to low doses of chemo. And now they've discovered that LOH instances don't respond as well and so they're tweaking the treatment to account for this variation which will hopefully bring those numbers back in line with the non-LOH numbers.

While driving home from the clinic I was processing what we had been told. I found a strange metaphor filling my head and so I explained my thought to Mandy:
Life gave us lemons and we made lemonade, albeit a sour batch. Now it's like we just found a turd floating in our lemonade.
"Why a turd? Why not...a bug?" my wife asked.
You can just flick a bug out of your lemonade, but with a turd you need to go get a ladle to scoop it out and then put in some chemicals to make sure it's still safe to drink.

Inappropriate analogy? Maybe. A way to make me smile about a shitty turn of events? Yup.

Monday, December 13, 2010

Sunday, December 12, 2010

Snowed in, then Out

Last week we were given tickets from Children's Hospital to see Disney on Ice on Saturday. Well the weather fouled up those plans as there was no way we were going to get more than a few blocks, even if we wanted to. Below is a picture taken of the snow drift piled up against Julia's window.

Luckily we were able to transfer our tickets to Sunday and since the roads were decent, we still got to make it to the skating show. All four of us enjoyed it and it was great looking over and seeing big smiles on the kids' faces. The tickets for the Saturday show were in a suite with other people from Children's Hospital. Our transfer tickets were in the same suite but we were the only ones in it, which made it kind of lonely, but the extra space was nice.

I had been disappointed of our change of plans because the Packers game was going to be on TV (the Metrodome's loss was our gain), but now I was going to be away from home for the whole thing. I was able to see the score during intermission and the very ending of the game when the show was over. At that point, I was glad I missed it.

Finn got mad a few times when we wouldn't buy him one of the spinning, flashing toys. Julia explained to him, "Finn. They walk around and yell because they're just trying to get you to buy their stuff." The kids did get cotton candy though, as we couldn't hold off ALL the demands.

The above two pictures are without Finn because he insisted he was NOT getting his picture taken. We actually snagged someone to get a family shot of us and he threw a fit and wouldn't cooperate for it.

The show consisted of Mickey and gang traveling to different places while on vacation. So the parts that they acted out were from The Lion King, The Little Mermaid, Lilo and Stitch, and Peter Pan. They were all really neat to see, but Peter Pan was our favorite.

Our schedule this week is chemo on Tuesday. Julia is still doing well. She's feeling tired at times and still doesn't have much of an appetite. Since she's already lost a few pounds (from where, I'm not sure), we try to coax her towards high calorie, high fat foods and are more lax when it comes to snacks. Those sorts of rules don't always make it easy for Amanda and me to eat healthy though!

Tuesday, December 7, 2010

Vincristine and Doxorubicin and Pentamidine, Oh My!

Yesterday morning Julia had a triple dose of drugs for her chemo treatment. One was her regular weekly chemo drug, the second was a new chemo drug, and the third was an antibiotic (drug names in the same order as in the title). We had still been fighting the twice-weekly antibiotic that she's been taking orally and so we opted to get a similar drug intravenously via her chest port. It's needed every three weeks and we squeeze it onto the end of a chemo appointment. She'll continue to take it for a few months after her chemo is completed. It's used to prevent PCP, a type of pneumonia caused by a fungus found in human lungs. When a person's immune system is compromised, like in people with AIDS or undergoing chemotherapy, the pneumonia can develop, while in healthy people it just sits there not causing any harm.

I like reading up on information about the drugs, but try not to dwell on it too much afterward; the potential side effects are scary. It's kind of a given these days though. Radiation treatment increases the chance of stomach and ovarian cancer. Each chemo drug comes with such a litany of fear-inducing side effects it would make those TV commercial drugs blush. And while it's great that Julia's body is handling everything so well, that's not any sort of indication that the treatments are wiping out every last cancer cell. If her body is strong enough to ward off the side effects, who is to say that the cancer cells that were created by that same body aren't on the strong side of things too and able to resist the treatment? Too cynical? Honestly though, I don't dwell on that sort of thing, even if I can't stop my mind from meandering down that path from time to time. I'm a realist who doesn't like surprises, so every outcome I can think of runs through my mind. I'm resigned to the fact that we've got to continue with things as best we can and just hope things turn out on the good side.

Julia stayed home from school after her Monday treatment, but went today and felt decent all day. Mandy had fun at her book club last night and brought home a nice variety of Christmas cookies. After supper tonight we all had a hefty sampling of them (and I might have had a slight sampling before we ate too...).

Julia got a cool gift today - a friend made her couple of super cozy ponchos and hats!

Saturday, December 4, 2010

Time to relax?

I wanted to take another opportunity to say thank you to everyone who has been caring for us. That word takes on so many different meanings at this point... caring thoughts, caring words, caring gestures, caring actions, and the list goes on.

I struggle so much to figure out how to say thank you. Is it okay just to say that words simply aren't able to describe how it feels to be so cared for? I'm sure that others who have been through similar life-changing moments totally understand what this feels like - an overwhelmingly beautiful feeling of gratefulness. People always assume that news like this will never touch their family or someone they love. When you really think about it though, you just need to be strong and continue forward.

It's especially interesting, I think, on the weekends when there is more time to "relax" and get away from your regular routine. I really used to love that chance to just take it easy, but now it's tough. Feeling exhausted and having an opportunity for thoughts to wander, that don't typically have time to cross your mind when you stay busy. Don't get me wrong - I totally need time to relax. It's just that relaxing just isn't the same as it used to be.

On a happier note, Finn and I made cookies today! I wasn't planning to do any holiday baking this year. However, the book club that I'm part of is doing a cookie exchange on Monday. This definitely suits the theme of the evening, since the book is called "The Christmas Cookie Club." I rarely attend book club without having the book finished, but Monday might just have to be one of those rare occasions! Enjoy the cookies, book club friends! (They definitely aren't beautiful cookies, but they have a special story behind them!) For those of you who don't get a taste, here are a few pictures of our creation.

Thursday, December 2, 2010

School Visit

On Wednesday, the Child Life Specialist, Jodi, came to Julia's class to talk to the kids about everything that has been going on over the past month. Besides going over the things Julia has gone through and showing pictures, an emphasis was made on certain fact that first-graders might wonder about or benefit from hearing. One such fact is that cancer is not contagious. Children are taught from an early age that you can catch a cold or other illnesses from other people, so it's a natural inclination to shy away from someone who is sick. Another point that was made was that the kids in her class now know more about the things Julia has gone through and will be going through and that makes all of them advocates for her to other kids who might not know as much.

Julia did a great job of being up in front of the class and answering some questions posed to her.

Julia got to walk around the class and show off some of things she's gotten to help her along the way.

Finn even helped his big sister pass out the hospital kits that each student got to keep.

Here's a group shot at the end with Jodi and all the kids wearing their new gear.

Tuesday, November 30, 2010

Coincidental Connections

Two years and a month before Julia's ordeal started and two days before she turned four, I wrote about being touched by a person's battle with cancer. At the time, I hadn't ever dealt directly with any friend or family member who had cancer. Reading back over it again brings back some of the things I felt over those couple of weeks and, in light of my family's current situation, gives new meaning and just a sliver of understanding of what she went through:
A Friend I Never Knew Died Today

Monday, November 29, 2010

She Really Does Have Cancer

I've jokingly wondered if anyone thinks we're making it all up since Julia's body is handling the treatments so well and she's showing practically no signs of side effects (as indicated in the above picture). She's tired more easily and has less of an appetite, but otherwise her normal self. I can at least prove she had a major surgery though since she finally got her bandage off today after it had been slowly peeling for about a week. I'll make you click the link to look at her scar (and radiation markings) just in case you would rather not see it. Here it is. It was longer than we expected, but the scar was less noticeable than we had thought it would be.

Today was another doubler. We arrived right on time for radiation at 8:00 in St. Paul. After waiting for nearly thirty minutes we found out that the radiation machine was broken. We waited a little while longer and then were told it might be awhile still, so we headed to Minneapolis, late for the 9:00 appointment. Afterward we headed back to St. Paul, not knowing if the machine was fixed or not. Luckily it was and everything went smoothly. I used my daily dose of cynicism by asking Amanda if we should really be putting our daughter into a radiation machine that breaks down.

Now we only have two more days of radiation! And these last three appointments (including today's) are focused directly on her kidney and drainage site rather than her entire abdomen - so that made us really happy.

After talking it over with the nurse and oncologist we decided to make better use of the hardware in Julia's chest and give her the antibiotic (that we fight with so strenuously about) via her port. So instead of forcing it down twice a week at home, she'll get a similar medication once every three weeks during her scheduled chemo appointments. Next Monday will be the first go at it and we'll continue it as long as she handles it ok.

We're excited about Wednesday because a Child Life Specialist is coming to Julia's school to do a presentation for her first grade class. Amanda, Finn, and I will be attending too. She'll talk to the class about things that are happening to Julia and all the while using the proper terms but in ways the kids can understand. They can ask questions and will even get information to take home to share with their parents.

We did eventually find out who gave Finn the firetruck and it made the story even more cool. A neighbor dropped it off one day because her grandson had outgrown it and she knew that Finn was of a good age to enjoy it. At the time, she had no inkling that anything was amiss or that Julia was in the hospital at the time.

Thursday, November 25, 2010

Thanksgiving Quickie

Our original Thanksgiving plans were to stay home because we had a radiation appointment on Friday. The radiation powers that be decided it would make more sense to have Julia's final three treatments on consecutive days, so we moved the Friday appointment to next Wednesday. So then we had a four day weekend and a little girl handling her cancer treatments like they were nothing, so we decided to travel. We left Wednesday afternoon and made it to Wisconsin Rapids about fifteen minutes before the snow started falling. We had a jammed packed day today of visiting relatives from all sides and enjoying two great Thanksgiving meals. We'll be heading back home tomorrow and, as great as seeing everyone was, we're looking forward to a weekend of just us.

Wednesday, November 24, 2010

The Promised Video Followup

In the last post I talked about the kids' dance recital. Here are the videos. Julia's two songs are first. To see larger versions of each video, click on the video one time after it starts playing.

In Finn's first one, a girl needed a drink of water after they started, in case you were wondering what the hullabaloo was all about.

Tuesday, November 23, 2010

Two Weeks Ago

I just realized that two weeks ago and a few hours ago was when Julia was recovering from surgery and we got the cancer news. (I still don't like saying or typing that word. It makes me want to spit.) It doesn't feel like two weeks, it feels like a lifetime.

The radiation and chemo treatments on Monday went fine, aside from Julia taking her sweet ol' time downing her meds in the morning and making us almost late. Julia had nary a side effect, but was pretty tired so we kept her home from school.

Today was a busy day. Julia had radiation in the morning and went straight to school afterward. This was her first time going back out for recess today. She had been staying in because of surgery recovery, but her incision hasn't bothered her in quite a long time now. In fact, the bandage should be falling off any day now. I find it interesting that it's still the same one that was put on when the surgery was done - it's never been changed or even peaked into and that was fourteen days ago. I'm very curious to see exactly how long the little pink scar is going to be. My guess is 3.5 inches.

The other excitement of the day was Julia and Finn's dance recital. Julia had missed four of the last five dance classes, out of a total of ten and so we left it up to her if she felt comfortable up on stage. She was all about doing it and so she gave it a go and had a good time. I've got some videos of the kids' performances, but it always takes longer than I think to upload them and I started it later than I had realized. So...I'll post the videos when I can.

While Finn and Julia don't always get along, here is proof that they can play nice together:

Sunday, November 21, 2010


We have a jam packed day tomorrow: radiation at 8:00am in St. Paul and chemo at 9:00am in Minneapolis. This is the first of two possible days where Julia will have both treatments on the same day. She went to school last week after her radiation treatments, but we'll have to wait and see how her body handles week two to see if she'll be able to do the same.

We've been doing a switcheroo between Amanda's mom being here and my dad. My dad left Friday and Amanda's mom is coming again Monday. The extra set of hands to do all sorts of things around the house has been helpful. I captured some good pictures of the kids with their grandpa. In the first, Grandpa Dayton is helping Julia with her homework and in the second, he's occupying both kids and the dog with a game of Chutes and Ladders.

Saturday, November 20, 2010

Thank You

Amanda and I wanted to say thank you. We've said it when we could, but overall, phone calls aren't always returned and many emails have gone unreplied. It's sometimes a choice between sleep or emails, between sitting down for awhile in silence or making a phone call. I sometimes feel bad about that, but I know it's ok and that people aren't expecting prompt responses.

It's easy to forget how many people are connected to you, even if only marginally. Mid-October, Julia was sitting comfortably in her web, happy and seemingly healthy. Then life took hold of the strand tied to her health and gave it a yank. It was jarring at first and it hurt, her physically and us emotionally. Her because it was her strand and us because our web is ever so tied to hers. But then something interesting happened. When Julia's thread snapped back, unbroken but reverberating violently, the vibrations flew outward in every direction. First these ripples encountered family and close friends, then outward to many groups of people: the staff at Children's Hospital, my coworkers at UWRF, Amanda's coworkers and students at Oltman Middle School, the staff at Westside Elementary and Julia's classmates, Rocky Branch Elementary, St. Bridget's and other churches, the RF Moms' and Dads' group, our daycare family, our neighbors, and others only connected to us by the thinnest of silky threads but with enough of a connection where they heard and were touched by Julia's cancer diagnosis. Amanda and I were amazed and continue to be amazed at how far out a six-year-old's little web could reach and how those connections could mean so much to us.

A lot of people have offered help and we haven't had the opportunity to be able to accept much of it. In theses first few weeks we just don't know what we need. Radiation will soon be done and we should be able to settle into a more normal routine. After that we should have a better idea of the areas of our life that are missing attention. So one request I have is that anyone who has expressed interest in helping out in some way and still wants to do so later, should ask us again in three weeks or six weeks or a few months. And if we tell you that we're doing fine and don't need anything, try to believe that it's the truth and not because we're too proud to accept the help (and we'll try to accept the help that we need!).

A lot of people have asked about giving us meals to ease that portion of our daily lives. Some kind folks set up an online place for people to go to sign up for a time to bring us something. I know that the link has been spread around through some circles but not everywhere yet, so I thought I would share it here:

Your continued positive thoughts are appreciated, your prayers are welcomed, and your gracious offers of help will be accepted if needed and forever acknowledged if not.

Thursday, November 18, 2010

Chemo and Radiation in Pictures

Julia has gotten sick a few times from the radiation, but when the anti-nausea medicine goes down well, she feels quite good. Good enough, in fact, that she's gone to school after radiation on Wednesday and Thursday. She's complained about feeling tired and she looks pretty worn out, but overall her spirits are still pretty high.

She had a snack of raisins after her port had been accessed for the first time on Monday.

Here Julia is pushing one of the saline flushes into her port herself.

Finn came along to the radiation treatment on Wednesday.

She's a trooper even with people pushing and pulling on her and green lasers sliding over her body.

The kids and I started watching the original Star Wars movies recently, so I've referenced it to describe the fancy contraptions that Julia gets to hang out in.


Tuesday, November 16, 2010

Seeing Some Side Effects

Julia did great for her first radiation treatment this morning. Soon after we could see that she feeling very lethargic. She just laid around most of the day and didn't have an appetite. After she ended up throwing up this afternoon, I figured out a way for her to take the anti-nausea medicine and then she perked up a bit. She was moving around comfortably and wanted to eat. Two weeks from today is the last radiation treatment and I'm very much looking forwarding to its end already.

A smiling moment from today:
Julia was sprawled out on the couch and feeling really tired. I told her she needed to sit up so that she could eat some crackers. She pretended to try to find her button to raise herself up like she had in the hospital. When she couldn't find it, she said she was trying to find the button to call the nurse. So I held up the palm of my hand and she pushed it. Just then the phone rang. It was Father Jerry from St. Bridget's calling to see how things were going and if we needed anything. Afterward, I told Julia who had called and said that she must have missed the nurse button and pushed the God button instead.

First Chemotherapy Finished

Yesterday afternoon Julia had her first chemotherapy treatment. The scariest part was just the fact that her port in her chest had never been accessed. She had cream on it to numb the area and so it didn't hurt to put the needle in. She got a little flushed when nurse Tom put in the needle, but otherwise didn't even flinch. She even helped push some of the saline flushes into the port herself. Afterward she was in good spirits and the staff said she did a crazy-good job for her first time.

It's unfortunate that she has a hell of a time taking medicine orally. She does so good on the strong chemicals pumped directly into her chest, but then gets so scared and upset about taking an antibiotic to prevent illness. I don't blame her, I'm sure it tastes horrible, but like I said, it's unfortunate.

The only possible side effect of the chemo we've seen so far is that her legs hurt pretty bad this morning. How she described it afterward we think it may have been muscle cramps. She's on anti-nausea medication too, so we're not sure if that would be an issue yet or not.

Monday, November 15, 2010

Back to School!

Torey and I took Julia to school this morning for the first time in almost a week. She was so excited to be there! It was really nice meeting with Julia's teachers, health aides, and principal. A huge thank you goes out to Westside Elementary School staff for being such a special part of Julia's life! We even got her signed up this morning to be in the school musical in February. That will be super exciting! Here are pictures of two very special people in my life: Julia before leaving for school this morning and Finn lounging - looks like a pretty cozy place to watch a movie!

Sunday, November 14, 2010


Julia had a ton of visitors to her room at Children's Hospital. People stopped in to do crafts, plant plants, invite to activities, bring dogs to visit, and more. But I think Julia's smile was the biggest when this woman stopped in with all of her musical instruments. And when I showed Julia the video at home, her face lit up and she couldn't contain her smiles. Video was from Thursday, November 11th.

Larger version found here

Saturday, November 13, 2010

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.

Friday, November 12, 2010

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.

Thursday, November 11, 2010

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.

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Friday, September 10, 2010

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