Friday Night Blogging

I've been meaning to make an update every night since Monday...that's kind of how it goes these days.

Last Monday we got Julia's blood counts tested and they had sky rocketed up from the week before. She had a white blood cell count of 35k, compared to 800 the previous week. 35k is much higher than a person normally would have (high enough to cause bone pain) and so we obviously stopped the daily injections to artificially boost her white blood cells. And that in and of itself was a milestone, because, if all goes according to plan, that will have been her last GCSF injection...ever.

This coming Monday Julia has her second-to-last chemo, the last one being three weeks after that. Then she'll have her final scans at the end of June. Well, they'll be final if they're all clear of anything that looks like it could be cancer cells. But we have every reason to believe that that's the result we'll get.

Julia's been busy on the social circuit: one birthday party last weekend and two tomorrow. I haven't quite figured out yet if she's excited for school to be done or not, but I think she'll enjoy the time off, at least for awhile.

When either of the kids are in a bad mood, they do NOT get along. But when they are getting along, they play really well together. I'm not sure what they were doing here, but they were having a good time.

Finn still likes wearing his tie and suspenders. He's actually worn the latter to daycare several times. Suspenders go with shorts and a t-shirt, right?

Skippy somehow puts up with that kid.

Julia discovered that wet paper towels can help cool off a bald head.

The Forgotten Picture

I was going through our pictures and realized that I missed this one from the sequence of family shots that I posted.

Julia's doing pretty well. She went to school everyday this week, which I think it's pretty awesome considering she spent the entire week before in the hospital. Her blood counts are a bit low right now, but that's expected and she's getting the daily injections to give the WBC's a boost.

Along with the blood counts, they did a urine test and found a trace of blood again. It's kind of frustrating and it makes me a bit paranoid, considering she's had a big ol' tumor upstream from the bladder. But from what our oncologist told us and from some reading I've done online, it's not abnormal for some people to have small traces of blood in their urine.

I better go check on the kids... Julia is frantically telling Finn, "No, keep your underwear on!" I'm going to choose to NOT bring the camera this time.

Chillin' at Children's: Day 5 HOME!

The Kauth gals arrived home this afternoon with much jubilation and fanfare! (Both the jubilation and fanfare were from Skippy wagging her tail so hard her whole back half was wiggling.)

We're going to keep pushing Julia on the fluids all weekend since she did have a speck of blood show up in her urine this morning.

You wouldn't know the girl just had ten hours of chemo over the last five days. Ten minutes after Finn was home they were putting on a show for us in the living room. This evening we ran to Target to pick up Finn's pictures, went out to eat, and then stopped for ice cream. Lots of smiles (and some sibling bickering).

We're glad to be all home together again and we're hoping others get to have that soon too. Julia's friend Carina has now spent the last 3+ weeks in the hospital after getting a bone marrow transplant. It sounds like she's toughing it out through the meandering ups and downs. Keep up with her story on her website if you wish. In any case, send her some love and positive vibes!

Chillin' at Children's: Day 4

Today Finn had his four year wellness checkup. He did really well, answered the dr's questions, did a vision test, etc. He's holding steady in the 75th percentile for size and the 99th percentile for cuteness. The asked him if he could draw a circle on a piece of paper and he refused. I prodded him a bit - he wouldn't budge, but he said he would write his name instead. He wrote Fnn, realized he missed the I, then wrote it above the Fnn. He dotted it with a little circle, so the dr got the shape she wanted anyway.

Afterward we went out for pizza to Luigi's. The plan was Mexican but I forgot it was Cinco de Mayo and that must have been why there was a long wait at Mariachi Loco. It turned out fine, since we hadn't been to Luigi's in awhile and the food was good.

Mandy was at Children's today, so I don't have any firsthand information, but I do have a few things I can relay. Julia had a good day again today. Her stuffy nose isn't as bad and her urine is still blood-free. Would it be TMI to let everyone know that any fears of constipation (which has happened in the past and NOT been fun) are over, too?!

She had some extended physical therapy today consisting of doing laps around the halls as many times as she could for six minutes. It looks like we'll be slowly weaning her off of her leg braces. She'll move down from wearing them 23 hours a day to having them off during the evenings at home. That'll be nice and hopefully helpful for others down the road. Julia is part of a clinical study to see if PT during chemo can help so that significantly less PT is needed after chemo.

The Kauth ladies should be returning from Children's sometime on Friday afternoon. Julia will actually be finished with chemo Friday morning around 6:30, but they want her to stick around for awhile to be on IV fluids to help flush the drugs through her body so as to not damage her kidneys.

Below is a set of pictures of Julia that I took last Saturday. That girl ain't sick, she's just a kid living her life.

If you open each picture in a different tab, you can cycle through them and get a neat flip-book type of effect.

Chillin' at Children's: Day 3

Today was the big switch off. This afternoon Amanda came from work to Children's and I headed home. She'll handle the last half of the week and hopefully come home with our oldest child Friday morning. I bet Julia wishes she could have a buddy to switch off with too...

Speaking for the portion I was there for, Julia's day went really well. It started off with a GIANT taco for breakfast. She ate nearly the whole thing and really liked it.

Julia spent a good portion of her day in the play room. She was doing art all morning and then this afternoon she participated in one of the many art projects that volunteers help with. She really was happy - the below picture was when I said, "Hey, Julia," and snapped it before she had a chance to smile. The volunteers helping were impressed by Julia's high concentration level and her use of patterns.

Julia ended up playing a lot today with one particular girl that she met in the playroom (and she was in the hospital room right next door to Julia). She was kind of the opposite personality of Julia (100% outgoing, super talkative, no fear) and it was fun to see them interacting. When I left this afternoon they were still in the playroom and making pretend meals in the toy kitchen. One of the nurses said that she and a few others said how cute the two were together and that they ought to be the face of Children's.

I talked to Amanda briefly a short while ago and the evening has gone well so far. I'm sure Julia will be up a fair amount again during the night to use the bathroom, but otherwise I'm expecting no issues.

Chillin' at Children's: Day 2

Unlike yesterday's post, I'm going to keep this brief.

We had a long night of peeing, but overall last night went fine.

Julia and I spent some time in the morning in the playroom making paper chains and other decorations to spruce up her door.

Some mid-morning PT spiced things up a bit. Bopping a ball back and forth and playing with other devices hardly seems like work (says the guy who is NOT hooked up to a bunch of tubes).

Julia was pleased to have a visitor today - her (and Finn's) dance teacher, Ms. Jennifer. She brought all the necessary supplies and taught Julia how to knit!

Julia caught on quickly and kept at it after Ms. Jennifer left. After a few minutes, a certain loop stumped her and she took a break from her new hobby and moved on to a very familiar one: drawing.

I moved a chair so that it was looking out the window and she began a sketch of the Minneapolis skyline (a good idea that had been given to her a little while earlier).

There is still a standing rule at Children's (or maybe just the 8th floor) that no visitors are allowed under the age of five. The rule is in place during flu season and right now because of a measles outbreak (I think). I talked to a social worker today to get an exception for Finn. So the final excitement of the day was that Mandy, Finn, and Julia's Grandma Beth came to visit and have supper with us. Julia and Finn were cute together. They sat in Julia's bed, watched TV, ate, and fed each other Fritos.

Compare the above to another similar situation when Julia was in the the hospital last October: Click here for cuteness!

The only medical issues to make note of is that the tiny amounts of blood in her urine have been gone all day and she seems to have developed a stuffy nose overnight last night. The nose has been bothering her off and on all day so she got some Benadryl this evening. It knocked her out pretty fast, but it was timed well enough to let her finish the last few minutes of the movie Spy Kids.

I'm hoping that her slightly lowered fluid intake will mean a few less trips to the bathroom tonight. A few longer stretches of sleep will do her good. I have nothing to complain about - I'll be at home in my own bed tomorrow night.

Chillin' at Children's: Day 1

This isn't quite live-blogging since I'm not updating as things happen, just keeping note so I can post the final product later (and "later" is now!).

6:40am
Late start waking up, but the extra sleep was needed. I aim to drop Finn off at daycare at 7:00 (it's usually ends up being closer to 7:15), so we don't have long to get ready. He just woke up too. Mandy is getting a late start to work, so she is telling him good-bye and he's already ramping up to drop a massive fit as soon as she walks out of the house.

6:45
Mandy is down in the kitchen and just yelled up to Finn that his egg is hatching. He got a large egg for his birthday that you soak in water until it hatches out a baby dinosaur. His mood just flipped from my-parents-start-of-the-day-is-gonna-suck to I'm-the-happiest-boy-alive.

6:50
Finn was super excited and is now getting dressed without a fuss. He's still beaming from when Mandy referred to him as a Dino Daddy before she left.

7:10
Home from dropping off Finn at Jamie's house. Julia is up and reading. Have to get her dressed, teeth brushed, breakfasted, and finished packing to be out the door around 8:00ish.

8:05
Heading out - not too bad. Julia just finished her book after only about 15 minutes of driving - I guess she'll have to just sight-see for the rest of the trip.

9:05
Sitting in the Oncology clinic. Because Julia's port got twisted in her little traumatic episode after her last hospital stay, it's not as straightforward to access it. So we decided to have wonder nurse Tom (he makes the kids call him that(not really)) access her because he knows just how to do it.

10:00
Just got into Julia's room on 8th floor. Corner room, seems smaller than average, but has a nice view (I would rather have larger than average and a brick wall view).

10:15
I'm heading back up to the room with the rest of our things from the car, plus a little extra for Julia. I stopped in at the Geek Squad office located in Children's and borrowed two DS games for her.

10:45
People are constantly coming in to check Julia, ask us questions, check equipment, etc. Mary, the nurse practitioner did the checkup on Julia and went over any questions we had.

11:15
I'm happy to be stepping out for a little while. Not that I need a break already, but Julia's psychologist, Sheri, just popped in and she's someone Julia will just jabber and jabber to about all sorts of things. She always is happy to talk to Sheri and that makes me happy. So I'll gladly sit here in the family resource center for a little while and read.

1:30pm
Julia is eating a late lunch of chicken tenders, a banana, and apple juice while watching some Good Luck Charlie.

3:00
Mary, the NP came in to say that Julia had a microscopic amount of blood in her urine and they'll respond to it with heightened fluids (i.e. peeing every 1.5-2 hours all night long) and an extra drug that will protect her bladder - one of the chemo drugs creates a by-product that is hard on the bladder. It's a little concerning because the urine sample was provided before chemo started.

3:25
Julia's oncologist, Dr. Chu, stopped just in. It's always nice to talk to a familiar face, at least for me - Julia will hardly say a word to her. Aside: I'm guessing Julia's non-stop chatter to a few people at the hospital and barely uttering a word to others has to do with the fact that the ones she talks to have nothing to do with administering or making decisions about her medical treatment. Dr. Chu was not at all concerned about the blood in the urine at this point. She said it was literally 2-3 red blood cells per zoomed in microscope view.

3:45
Julia is up and moving. We're taking a walk around the floor with a stop at the fish tank to see if the ol' puffer fish is still around. We see extra fish, but not him. Julia's theory is that if he puffs up big, he gets punished and the punishment might mean being removed from the tank.

3:55
We're now down in the play room and Julia is working on an art project.

4:20
I didn't mind that we were interrupted so that Julia could get a massage - the art project was a little too confusing for me anyway. It'll be something good for Julia and her mom to work on in a few days.

6:15
Supper time and a movie. Julia is having a ham and cheese sandwich, carrots with ranch, chips, and milk. I went down and grabbed a burger from the grill and brought it back up. The movie is Babe - Pig in the City. I might be enjoying it more if I was paying closer attention to it. But it's kind of dark and not as feel-goody as I was expecting.

7:45
Julia is on the phone with Mandy and she just asked, "Can I talk to the Dinosaur Daddy?" A few minutes later and she was saying in an aggravated voice, "Finn, just answer my question!"

8:00
Got PJs on Julia and now we're heading out for a few laps around the floor before bed.

8:30
I talked to the nurse while Julia motored around and she said that Julia's last urine sample showed no blood. Interesting.

8:45
I'm just going to finish this up while Julia reads in bed. I'm curious to see how comfortable the chair-bed is going to be for me. My plan is to take a shower and then read for a little while (as long as the light won't bother Julia).

I was hoping to add a little color or embellishment for humor's sake (like I did here, but I guess some situations don't lend themselves to that sort of thing. I'll try to update tomorrow evening again, but I might not get into the minutia of the day, like I did today.

Big Days

Big day #1:
Last Tuesday, Amanda and I had our 8th anniversary! We didn't do anything terribly exciting, but it was nice spending time with the kids and each other.

Big day #2:
On Thursday, Finn turned four! He was very excited to make his world famous Finn's Scotcheroos to take to daycare for this birthday treat. Luckily Jamie took a picture because we didn't think to.

We did, however, take some pictures of Finn opening his presents. Most of them were delivered awhile ago and stored in the closet or delivered recently by mail. Finn didn't mind though, he enjoyed opening them on his b-day! And even though he's not smiling in these pictures, he was very excited about everything he got.

The rain finally let up for long enough today to walk over to the park and try out Finn's new Batman kite. It was quite breezy, so it flew really well. Here are videos of each of the kids flying it.

Big day #3:
This one hasn't happened yet. On Monday, Julia goes in for her last planned inpatient chemo in the form of a five-day hospital stay. We're hoping that the week flies by and the only problem we have to deal with is arguments over how much Disney Channel we have to watch.

The Naked Princess

Maybe she wants a little sister. Maybe she feels closer to him because their hair styles are more similar than they've even been. Maybe she is prescient and knows what power these pictures will have over her brother when he's older. Maybe he just does it to be nice to his big sister. Whatever the reason, when those two get going, hilarity may very well ensue.

Julia informed Amanda and me that she and Finn were going to do a talent show and we were not allowed down stairs because they were setting up. Awhile later, she announced that all was ready and we could now come down to Finn's room to attend the show. We were greeted at his door with Julia blocking the way. She was fancied up in a dress and had glittery makeup smeared on her face and arms. She then escorted us into Finn's room to a sitting area next to the rest of the blanket-covered floor. Finn was decked out in a tutu and silly hat, as evidenced below. We found it very funny, but it was only the beginning.

The show was a hit and soon over with. While we went back upstairs, the siblings sidled into Julia's room and closed the door. At one point, Julia came out into the family room to retrieve a necessary prop for whatever they were up to. When Amanda walked to Finn's room to put clothes away, Julia told her, "Don't go in my room! There's a naked princess!"

Not too long after that, Amanda and I were in the office together when Julia and Finn paraded themselves up the stairs to show off their looks. They repeated this several times, each time with Finn wearing old dresses and accessories of Julia's that no longer fit her very well. He was soon hamming it up and putting on quite the show. As seen in the third picture, Julia seemed quite proud of herself.

They still weren't done. Next was the fashion show. They set up a little blanketed runway in the family room along with a sitting area for the audience. Amanda and I took our seats with Finn waiting out front and Julia behind us. She told Finn to "Go!", then she hit the auto-play button for the pre-recorded songs on the keyboard, and then joined him for some twisting and butt shaking. Julia did a lot of instructing to her younger brother. I'm not sure where she got so much knowledge about "proper" catwalk etiquette, but she had no problem in doling out the advice. He did get to end with a look of his own: his favorite dinosaur costume.

Through this all, when Julia gave Finn an instruction, he would respond with, "Yes, your majesty." I assure you though, he does not respond that way to his parents. And in fairness, Julia claimed that she referred to him as "your highness."

If You Can Read, You Can Do Anything

If you can read, you can do anything. Julia has that on a sign on her bedroom door. When I first said that to her a year ago, her response was, "Even fly?" She had a smug look on her face and she was having fun trying to get the best of me by being super-literal. Lately she's been devouring chapter books one after the other; sometimes two in one day.

She'll carry a book around and find any opportunity to read.

With the weather warming up (then cooling off, but soon to be warming up again), the kids are getting more opportunities to be outside. Lately they've been into making fancy mud pies and drinks with all sorts of things they find laying around outside.

One afternoon, after doing some chalk drawings, Finn was riding around on his tricycle on the driveway (he was on a two-wheeler with training wheels last Fall, but wanted the three wheeler instead). I recorded him and he treated me to two songs with lyrics consisting of things he likes to do. At just after 3:30 on the video, he almost falls off during a turn. The look on his face was hilarious!

Julia has been feeling pretty well except for a nasty, throat-hurting cough that lasted a few days. Her blood counts were a little low this past week, but it was expected. They should be higher when she gets them tested again on Tuesday. The following week, the first week in May, she'll be in the hospital for her last inpatient chemo treatment. It'll be nice having that over and done with!