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.