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.

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.

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

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.

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.

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.

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:

Twofer

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.

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.

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.

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