Away, With Anything That Holds You Safe

On Saturday, while Amanda and Julia were living it up at the hospital, Finn and I were forced to attend a birthday party for a newly minted four-year-old. We had to endure pleasant company, good food, cake, and a piñata. Finn had fun, sometimes playing with the other kids and sometimes sneaking off by himself and finding a quiet place and some toys to play with. It was a nice time, but my mind was elsewhere.

I had spoken to Mandy earlier in the day and Julia's blood counts were still low to the point of non-existent and the mouth sores that had quickly developed were ugly and painful enough to have her on a constant morphine drip. The pain medication allowed her to eat a little bit more and she was also on an IV nutrition supplement.

Mandy's dad was in town for the weekend and that allowed us a little extra breathing room for making the switcheroo at the hospital. So Sunday evening, Mandy drove home while Grandpa Duane stayed at the hospital with his granddaughter. I drove to Children's last night (and thoroughly enjoyed seeing both big-building skylines at night). Julia's fever was back up at the time and she was not sleeping very comfortably. By the time morning came, the fever was down to close to normal and the best news was that the blood counts were up. The word around the hospital wing is that we'll be here until Tuesday for sure, maybe longer. They want Julia to be off antibiotics, off morphine, fever-free, and eating decent (and all for 24 hours) before they send her home.

I think Mandy and I are handling things very well. People tell us that we are, but they can't really know for sure. I can't speak for Mandy on this, but I am handling it well - and in a healthy way. That doesn't mean I don't fluctuate between acceptance, anger, sadness, despair, and hopefulness, I do, but the whole time I feel I'm properly realistic and grounded. It throws me off a lot when things force us from our planned road map, but if I can figure out a plan of sorts, even if it's just in my head, I feel better. That all being said, I sure hope these last few days have been rock bottom.

The ending of all of this is still unwritten, and while I remain optimistic about Julia's future, hers is the biggest unknown. "Unwritten" for me doesn't mean completely unknown because even though I don't know what my life will look like six months from now, I am certain that whatever the outcome, I will come away unbroken and changed only for the better.

The picture at the top is from before this hospital stay, the next three are from Saturday, and the bottom one is from today.

Daisy's Wild Ride

My family doesn't drive me as much as they used to because I started to get older and they got a younger car. So I spend a lot of my time sitting and resting in the garage. Cocoa is the name of the younger car. She is a pretty brown color and that is how she got her name. Cocoa is nice and she keeps me company with stories about all the things she sees when she's out driving around. My most favorite time of the day is the early morning. After Cocoa leaves to take Amanda to work, Torey and Julia and Finn come out in the garage and climb in so that I can drive them to daycare. Oh, how I love having the kids ride around in me! In the winter I protect them from the cold air. Even though it's only a drive of a few blocks, it keeps me happy all day.

A few weeks ago, Torey took me out for a different drive. At first I was excited but then I got scared when we went to the car doctor, the mechanic. I was very nervous, but afterward I felt very good! They changed my oil, gave me a new headlight, gave me a new battery, checked my brakes, and checked all my belts. It was very refreshing! Torey explained that they needed to do that because Julia has been sick and if she needed to go to the doctor and Cocoa was gone, then I would have to be feeling well enough to handle the job. I felt a little bit excited but I didn't really think I would get to drive anywhere exciting.

Yesterday started off pretty normal. Finn hopped in and waited for Torey to buckle him. I was a little confused as to why Julia to didn't get in and Finn must have been too.

"Daddah, Julia not coming?"
"No, bud," Torey said, "Julia has a fever so we're going to keep her home today."

On the way to daycare, Torey asked the same question he asks the kids everyday, but this time, just to Finn.

"What kind of day are you going to have today, Finn?"
"A great day!" Finn exclaimed.
"What kind of day am I going to have today?"
"A great day!" both my riders said in unison.

After we got home, Torey went in the house and I settled in for a day of resting quietly. Then, a little while later, all of a sudden, Torey burst back out the door from the house with a bag in his hand. After he put the bag in the trunk, he went back in and brought Julia out. The two climbed in and as Torey started me up, he explained to Julia that we were going to take her to Children's in Minneapolis because her fever was too high, 101.5. And that temp is the somehow-determined magic number that means she needs to go the hospital. Julia seemed to understand and she wasn't upset at all.

As for me, I could hardly believe it! I was on! It was my turn to shine! My family needed me and it was up to me to get them to the hospital safely to make sure Julia was ok! I was ready! And...I was scared.

After a few blocks, Torey patted my steering wheel and said, "Daisy, you got this." That made me feel better.

I recognized the things around me for the first part of the trip while we were still in River Falls and I kind of remembered some thing from River Falls to Hudson, but after that, it all seemed new to me.

There was quite a bit of traffic and so we had to slow down and change lanes a lot. The rush hour traffic made for some slow going, but I maneuvered as if I drove the route daily and we made it safely. Julia was great the whole time - she was just looking out the window at the sights.

After sitting in the parking garage, I had more excitement when Amanda came out and drove me back home. She explained to me that Julia had to stay over night in the hospital because of her fever and low blood counts.

Then this morning, Thursday, Amanda dropped Finn off at a friend's house for the day and I drove her back up to Children's Hospital. It wasn't scary anymore because after doing it once, I knew I could do it again.

After spending the day parked again, Torey came out and we drove to get Finn and go home. Even though I'm just a car, Torey explained to me that the doctors want to keep Julia in the hospital until her fever is gone for 24 hours and her blood counts are a bit higher. So her ETA for coming home is unknown but we're hoping for Saturday. Torey also explained how Amanda and he talked to a gastroenterologist about the pros and cons of getting a G-tube put in order to be able to get nutrition and medicine directly into her stomach. If they're able to move forward with that, it would happen within the next few weeks.

Anyway, for a car who sits in the garage most of the time, I had a wild few days!

Pot Hole

When we came home from hospital on Friday, Julia's blood counts were very low. On Saturday, we started more daily G-CSF injections to bring them back up.

We started running into some issues even before the Monday chemo appointment. Finn was up in the early morning hours throwing up and with a fever. That meant I stayed home with him while Mandy took Julia to her appointment. Our oncologist felt that Julia's weight isn't stabilizing enough so she wants her to take an appetite stimulant. The problem is that Julia still won't allow herself to take medication very well, and that really won't cut it for this one. This medication only starts to work after it builds itself up and so missed doses would set it back. That means when she spits half of it out or throws up after swallowing it, that dose (and the ones after it for awhile) won't be doing a damn bit of good. Tonight was supposed to be the first dose. Julia ate a good supper and then got herself so worked up from the idea of the medicine that she threw up. The equivalent of skipping a meal is kind of the opposite of what we are going for. She's so exhausted we're not going to fight, but just send her to bed and try again tomorrow.

If this doesn't work, the next option is to have a tube put into her to allow us to give her nutrition directly into her stomach. At this point, I'm feeling resigned that that's the route we'll end up - surgery number four. We already have a consult appointment set up for Thursday with the gastro people to see what's what.

Along with the extra appointment Thursday, instead of getting blood work done at the RF clinic, we'll be going back into Children's because the Dr. was pretty sure that Julia would need a blood platelet transfusion (different from the regular blood transfusion she had last week).

Finn ate a decent supper and his fever is now low grade, so here's hoping that we're over that minor hurdle and that the rest of us don't get that little stomach bug.

I can safely say that today has been the most stressful day I've had over the last couple of months.

No comments on this one, I don't feel like advice and I'm assuming anyone reading has well-wishes, so we'll leave them implied.

I told myself I was too tired to post something tonight, but then I started thinking about everyone who is thinking about us. You convinced me... I'll write! Julia is still awake at this late hour. Great. But she's eating some ice cream, so thats good news. Sure wish I could eat ice cream before bed and be praised for doing it and then be offered another bowl-ful!

Julia's day has been pretty good. We're starting to wonder if she's getting enough fluids. She has shown signs of dehydration. Our nurse this evening, Amanda(!), is keeping a close eye on her blood pressure because it was pretty low the last time they took it. We're hoping that getting more fluids in her will help with that.

We had a few visitors today and that was really special. It sure makes the day go faster. Thanks to those of you who traveled over here. I think that it's nice a couple times a week.

Julia has been in good spirits most of the week. There seem to be more frequent emotional times lately though where I think she starts feeling really overwhelmed all of a sudden. Maybe it has something to do with how things are getting more challenging or maybe that she's just as tired of all of this extra commotion in life as we are.

One other important thing to note before the end of Day 3... Happy Birthday to my wonderful husband, Torey! We all love you!!! I'm sure that all of our blog readers are looking forward to your next post. I feel like I'm rambling and you are so poetic. Thanks for everything you are doing for our family and I hope you enjoyed that pecan pie! (In fact, Julia and I are really hoping that you saved a slice for us!)

First Day Update

Day one of five-day-chemo-hospital-stay two. We felt like old pros at it now. We've been through this part of it before, so we pretty much knew what to expect. Got settled in and Julia was bombarded by the usual deluge of health care professionals. Periodic check-ins by her nurse, psychology visit, dietitian, music therapy, nurse practitioner, and others that I don't recall exactly what the reason was. I'm not really complaining, it's all for Julia's well being, it's just that it's hard to get her to open up in new situations and so with constant new people, she doesn't give much of a response. Still, everyone always has high praise for how things are going and how well Julia handles it all.

Things didn't go quite as smoothly as they could have though. A blood test came back with low hemoglobin: 6.7k rather than the >7k that they want. So that meant Julia got to have her first blood transfusion. Besides the normal screenings that are done on all donated blood, blood for oncology patients is irradiated to blast away any random antibodies or anything else that might offend a weakened immune system. She's finishing up getting the blood as I type.

There are a number of side effects they watch for during the transfusion, including spiking a fever. Interestingly, Julia spiked one before getting any new blood. That's not good, but we were glad it happened then, otherwise it would have been assumed it was a reaction from the blood and that could have clouded the real cause (which is yet unknown). So the 103.5 temperature was a little alarming. She took some Tylenol and it's been down now between 100-101. Some blood was taken and it'll be watched over the next 48 hours to see if anything grows on it. If so, they'll treat her with the needed range of antibiotics. Right now she's already on an broad spectrum antibiotic. Hopefully it's just something that simply goes away. I recall when she got her port installed, the surgeon talking about a chance of infection just because of nature of it, i.e. a piece of hardware installed under the skin. I believe he said about half the people with them will have an infection at some point and most are easily treated while others require a new one put in.

"Took some Tylenol" doesn't really do justice to the process. The very mention of "medicine" triggers tenseness, fear, and a stubborn attitude. She chose mixed with applesauce over liquid or chewables and that still took 20+ minutes of crying and pleading and gagging to get it down. From a parent's point of view it's very frustrating. I think (and by "think," I mean, "scream inside my head") to myself: "Damn it! People stab you in the chest, inject crap in your arm and you grit your teeth and bare it. Someone mentions applesauce mixed with something and you freak out?! Julia, c'mon, you CAN do this!" It's hard on me because I hate seeing her in so much distress.

She ate a decent supper while we watched Despicable Me. It was a pretty funny movie and it was awesome that Julia let out a few bust-out-laughs. I laughed along with her because it made me so happy to hear those sounds come out of her.

Oh, and her room has a better view this time. Rather than just the back of the building, she's overlooking the Minneapolis skyline. She doesn't seem to care one way or the other, but I really like it.

I usually come up with a blog post title that I like by the time I get finished writing it, but I got nothing this time.

No Matter the Outcome on Saturday...

While walking the last few blocks til I got home, I could see Julia's bright teal winter coat moving back and forth over the driveway. A few more steps and I noticed Amanda's darker coat was doing the same thing - shoveling, I realized. Julia had the little red plastic shovel and Amanda the big metal one. Julia was cleaning up the lines from my wife's pushes. I was almost to the driveway when I finally noticed Finn up on the deck, pushing snow around with the other little shovel. I took Amanda's place and she went in the house to throw together some supper. The snow was fluffy and light, but I was happy that a third of the driveway was already finished. The kids gave up on assisting and switched to snow angels and sliding down the snow piles. I finished the shoveling and then we went in to eat.

Julia had to eat fast because she had an appointment to get her blood drawn at the clinic. Good blood counts: five days of in-patient chemo starting Monday. Bad blood counts: more testing early next week to see if they can let her get her treatment. We should find out the results Friday.

While Julia was picking at her waffles, eggs, sausages, and kiwi, Amanda said that a UPS truck was parked outside. A few minutes later there was a tap on the door and when I opened it, a box was sitting there. I glanced at the name and announced that it was addressed to Julia Kauth. I also noticed that the packaging tape holding it shut was imprinted with the Green Bay Packers "G".

Julia started to get up to open it but was promptly told that it would have to wait until after her appointment - it was time to leave. It was then that I noticed the return address: Green Bay Packers. I told Julia and she gave me a funny look and then asked if she could have some garbanzo beans. The beans and the box had to wait until they got home.

Finn and I finished eating and cleaned up while the ladies ran to the clinic. I was getting pretty anxious to see what was in box and had come to the conclusion that my father-in-law must have had something to do with this.

The appointment was over with quickly and as soon as Julia's boots and coat were off I suggested she check out her package. She opened it up to find a very nice card and a treasure trove of Packers items. When Finn saw the football, he said, "Oh, a Packers soccer ball!"

Amanda called her parents to confirm my suspicions and Julia told them about what she got. Many thanks, Duane, for a thoughtful gift.

You might not think a six-year-old girl would care that much about football gear, but she sat quietly looking at the items for several minutes before saying that she would have to watch the whole game this weekend. The thoughtfulness was not lost on her. Unfortunately I had to tell her that the Packers are playing late Saturday night and she wouldn't get to stay up to watch the whole game.

I've always been a Packers fan and proud of the small-town feel the team portrays. No matter the outcome of the game on Saturday, it's nice to know our home team will take time to make such a meaningful gesture and is such a classy organization.

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.