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: www.foodtidings.com

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.

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