Expect the Expected

I wanted to update people with today's happenings. And since it's only still Monday for another ten minutes (which doesn't bode well for me trying to get to bed earlier these days), I better get moving!

Well actually, I guess I'll back up a few days first. We got Julia's blood tested on Thursday and her counters were low, low, low. We decided to keep her home from school on Friday and just let her rest. This weekend she was really exhausted, but we had a nice weekend just hanging out.

This morning was the normal weekly chemo appointment and blood testing. Unlike the last ones, these were high, high, high! So that means no more daily G-CSF injections (at least for now). I was very pleased when they removed the little catheter from her arm.

Julia's blood counts are expected to drop somewhat from their artificially inflated numbers from the injections, but are not expected to drop to as low as they were. If those expectations occur as expected we are expecting to start another five-day, expectation-filled, chemo hospital adventure next Monday (they'll be expecting us).

G-CSF

It's easy to name blog posts when there's always a new cancer term that starts affecting our lives.

During Julia's chemo appointment on Monday, she got a new piece of hardware installed. Because her white blood cell counts are expected to be bottoming out from her hospital-stay chemo, we need to give her a daily injection of a drug to help stimulate her bone marrow to crank out some more of the good fellas. To make the process easier, they installed a subcutaneous catheter in the back of Julia's arm. The tube is placed in her fatty tissue and not in a vein. So the big idea was that the injection goes into the tube and we would be giving Julia's skin a break from being punctured. Well that part worked, but we didn't realize it would cause a sudden burning sensation for a few seconds after going in. So the first few times she got it, it wasn't pleasant, but somehow, tonight she just gritted her teeth and didn't make a peep.

What we're injecting at home is a granulocyte colony-stimulating factor (G-CSF). She gets her blood counts measured at her weekly chemo appointments and one other time during the week. If they're too low, she may need to get a blood transfusion. Hopefully the G-CSF will do its trick.

A couple of things I forgot to mention from Julia's week-long hospital stay:
My mom's friend gave Julia a huge bag of little presents. The instruction was that she could open one for every chemo appointment. She hugely looked forward to it each day in the hospital and it really brightened her day. It was an excellent idea for anyone else ever looking for something interesting to do for someone who has a lot of unfun medical needs. Julia will sometimes ask when her next chemo appointment is, just because she is excited about getting to open the next gift.

Julia met another young lady while in the hospital. Her and Carina would hang out in the play room and draw pictures. We ran into them at the clinic getting chemo on Monday too. Carina has a contagious smile and bright eyes. It makes me happy that Julia came across someone in a similar situation as hers who gives off such positive vibes. With permission, here's a picture of the girls, their moms, and their decorated IV carts.

And a few other random family pics from the last few weeks.

Funny Finn-ism for the Day

Setting the scene: Finn went upstairs to get his teeth brushed this evening before bedtime and was chatting with Torey about something. Julia started heading up the stairs to get her pajamas on and Finn came around the corner.

Finn informs Julia: "You know, Julia, when all of your hair falls out, then you won't be a mammal anymore."

What?! Where did this come from?! Finn is surely growing up and picking up information all over the place. We asked him where he learned about mammals and his response was "I just know about them." For those of you who have spoken with Finn personally, you can imagine his matter-of-fact tone of voice when reciting those words! Just so you know, we did inform Finn that sometimes mammals can have all of their hair shaved off and still be mammals - it's the fact that they CAN grow hair that makes them mammals. That definitely is a confusing statement to a little guy who must have recently learned that ALL mammals have hair.

Needless to say, this was a hilarious end to a long day. As tiring as it can be, I guess it can be a stress reliever to have a 3 year old in the house!

The Long Week and a New Year

Julia had her planned, week-long stay in the hospital last week. Everything went fine: no major side effects, didn't get too bored, and made it home during Friday night's bad weather without much of a problem.

Amanda stayed with Julia the whole time at the hospital this past week. I was there most of Monday, Wednesday, and Friday and I tried to squeeze in some work in between. Julia was fortunate to have some visitors. Several of Amanda's friends stopped in to see the ladies and on Wednesday, I brought Grandpa Dayton and Finn along. Julia's 1st grade teacher stopped in to visit for a few hours too, which was really special for Julia. And even when a person was separated by a few dozen miles or a few thousand, you can find a way to say "hi." Julia had a nice chat with her friend Jane on the phone and Skyped with Aunt Ember. Ember got the grand tour when we carried the laptop from the play room, down the halls, and back to Julia's room.

When Finn visited Julia in hospital, they got to hang out in style: lunch in Julia's bed while watching TV.


Julia's hair is definitely falling out now. From the start, she's been excited about the prospect of being hairless. And if she decides that bald isn't for her, she can choose one of the many, many hats she's acquired as gifts. The face she's making while pulling out hair was posed. She really thought it was funny to pull tufts of hair out and she's kept a very good attitude about it.


Monday is a busy day. We have a followup radiation appointment (just talking to the doctor) in St. Paul and then Julia's standard weekly chemo in Minneapolis along with an appointment with the psychologist (standard cancer patient stuff with an emphasis on, "You can swallow pills!"). Then, if Julia's feeling up to it, she has rehearsal for her school's musical and her first dance class. And if she's not feeling up to it, eh, maybe next time.

New Years didn't mean a lot, just the start to another year. We do have some idea of how this one is going to start, I just sure hope it ends better than this one did.

Christmas 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...

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.

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.

LOH

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.

With a Sprinkling of Pixie Dust...