Thursday, November 25, 2010

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.

Wednesday, November 24, 2010

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.



Tuesday, November 23, 2010

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:

Sunday, November 21, 2010

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.


Saturday, November 20, 2010

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.

Thursday, November 18, 2010

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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Tuesday, November 16, 2010

Seeing Some Side Effects

Julia did great for her first radiation treatment this morning. Soon after we could see that she feeling very lethargic. She just laid around most of the day and didn't have an appetite. After she ended up throwing up this afternoon, I figured out a way for her to take the anti-nausea medicine and then she perked up a bit. She was moving around comfortably and wanted to eat. Two weeks from today is the last radiation treatment and I'm very much looking forwarding to its end already.

A smiling moment from today:
Julia was sprawled out on the couch and feeling really tired. I told her she needed to sit up so that she could eat some crackers. She pretended to try to find her button to raise herself up like she had in the hospital. When she couldn't find it, she said she was trying to find the button to call the nurse. So I held up the palm of my hand and she pushed it. Just then the phone rang. It was Father Jerry from St. Bridget's calling to see how things were going and if we needed anything. Afterward, I told Julia who had called and said that she must have missed the nurse button and pushed the God button instead.

First Chemotherapy Finished

Yesterday afternoon Julia had her first chemotherapy treatment. The scariest part was just the fact that her port in her chest had never been accessed. She had cream on it to numb the area and so it didn't hurt to put the needle in. She got a little flushed when nurse Tom put in the needle, but otherwise didn't even flinch. She even helped push some of the saline flushes into the port herself. Afterward she was in good spirits and the staff said she did a crazy-good job for her first time.

It's unfortunate that she has a hell of a time taking medicine orally. She does so good on the strong chemicals pumped directly into her chest, but then gets so scared and upset about taking an antibiotic to prevent illness. I don't blame her, I'm sure it tastes horrible, but like I said, it's unfortunate.

The only possible side effect of the chemo we've seen so far is that her legs hurt pretty bad this morning. How she described it afterward we think it may have been muscle cramps. She's on anti-nausea medication too, so we're not sure if that would be an issue yet or not.

Monday, November 15, 2010

Back to School!

Torey and I took Julia to school this morning for the first time in almost a week. She was so excited to be there! It was really nice meeting with Julia's teachers, health aides, and principal. A huge thank you goes out to Westside Elementary School staff for being such a special part of Julia's life! We even got her signed up this morning to be in the school musical in February. That will be super exciting! Here are pictures of two very special people in my life: Julia before leaving for school this morning and Finn lounging - looks like a pretty cozy place to watch a movie!


Sunday, November 14, 2010

Smiles

Julia had a ton of visitors to her room at Children's Hospital. People stopped in to do crafts, plant plants, invite to activities, bring dogs to visit, and more. But I think Julia's smile was the biggest when this woman stopped in with all of her musical instruments. And when I showed Julia the video at home, her face lit up and she couldn't contain her smiles. Video was from Thursday, November 11th.



Larger version found here