Thursday, March 31, 2011

Recap of the Week

Last Friday Julia came home after spending a week in the hospital getting chemotized. For the first time, she was sent home on IV fluids administered via her port. It was a hectic time because Amanda and I headed out that afternoon to make it back to central WI for her Grandma Delores's funeral. My parents stayed with Julia and Finn at our house while we were gone.

All was going well until Saturday morning when Julia forgot she had an extra tube coming out of her chest and stood up too fast. She fell down and the needle pulled out of her port. She was in a lot of pain at first and after a trip to the ER and a rushed, three-hour drive home by her parents, it was deemed that she was ok enough to wait until Monday to get her port looked at at Children's. We were hoping it wouldn't require surgery to fix, especially since her week-long chemo treatments would be pushing her blood counts way down soon and with low counts, surgery would be too dangerous to even attempt.

Sunday, as biblicaly suggested, we rested.

On Monday the oncology folks agreed that there was some trauma to her port. After a little painful prodding, the chemo nurse was pretty sure he had determined that it was orientated slightly different - instead of facing straight ahead, it appeared to be twisted and pointing a little to Julia's left side. He confirmed this by deftly accessing her from the new angle and making sure fluids moved in and out. So while there was trauma to her chemo port, it seems as if things are still workable and functioning fine.

Tuesday's excitement consisted of Finn's dance recital. He did a great job and was happy to find another use for his ring bearer dress clothes from the wedding a few weeks prior.

Julia had been long awaiting Wednesday's visit from the Make-A-Wish people. They did a home visit and filled out a lot of paperwork to keep the process moving forward. Julia likes to joke around that her wish is to have a giant rainbow cookie (as big as the house) with no frosting. We still have to hear more, but we're hoping to be able to have Julia's wish happen in the Fall, after she's been finished with treatments for a few months.

Blood count Thursday! The counts were low. Low enough where she should wear a mask in public and low enough where we've decided to keep her home from school on Friday. It's a half day anyway, so she won't be missing as much.

Another new notch Julia has added to her +4 Belt of Cancer Curing, is the use of orthotics. It's been deemed that she's got a major weakness in her ankle muscles and some other foot issues (a side effect of some of the chemo) and so she got specially made leg braces during her hospital stay. She's been starting off slow and wearing them for short times each day but the hours quickly increase. Friday is supposed to be for eight hours and it won't be long before she supposed to wear them for 23 hours a day.

She had a lot of say in the coloring and design of them. They go from toe to nearly her knees and have blue swirls.

On the back of one is a dog bone and on the other it says, "Skippy".

Last Friday evening and Saturday morning was Relay for Life in River Falls. We were sad that we weren't able to attend but very glad to hear it turned out well and we felt the love from afar from everyone's well-wishes and the "Walking for Julia" t-shirts that had been made. Thanks to all who participated!

Tuesday, March 22, 2011

Hanging in there

Going into this third planned hospital chemo stay was different than the others: Julia's feeling great, her weight is up, and she's not having any issues. This chemo may knock her a few steps down the ladder, but seeing how far up she climbed this last month, a few rungs backward ain't nothin'.

I got Julia all settled in on Monday and then passed the torch to Mandy on Tuesday afternoon and she'll hang out the rest of the week. That was the plan and that part worked out ok. Finn getting Strep throat, however, certainly threatens to sabotage our carefully orchestrated week.

Julia chose to try the tuna sandwich at the hospital on Monday for lunch. She loved it and got it again for supper. Then for breakfast, she was going to order it again, but I asked her to take a break for a meal. She graciously agreed and instead started her day with a cheeseburger.

Julia got a lovely surprise on Monday when her hospital buddy Carina and her mom stopped in for a visit. I was particularly touched because they didn't have anything they needed to be at Children's for, except to stop in and visit because they knew Julia was scheduled to be arriving. They got an art project gift for Julia that she then spent a lot of time in the play room working on. When finished she had a pair of personally decorated flip-flops. With the completed project secured to her feet, quite a few people noticed them on the walk back to her room. And it gave Julia a great idea for Finn's upcoming birthday.

At the end of the week, while Julia is getting settled back in at home, we'll be traveling to Wisconsin Rapids for a final goodbye to Mandy's grandma who passed away this week. 77 years seems like a long time to kids and even to some of us who act the part, but aren't quite kids anymore, but anyone who knew Delores Jagodzinski would have been very happy with many more years to be with her. She'll be missed.

To end, let me pass on a rumor I've heard here and there at the hospital. They say, if you listen closely and happen to be walking past the play room on the 8th floor of Minneapolis Children's Hospital while Julia is in there, you might be fortunate enough to hear her singing a certain song. Parts of it cause her to smirk every time. But be careful! If she sees you, she'll certainly stop singing.

Saturday, March 19, 2011

Finn the Great

He sometimes gets overlooked on the blog, but Finn seldom lets us overlook him at home. He's fond of watching Scooby Doo and eating anything sweet. Finn's been anxious to get back to outside playing. He started to take care of that a little bit - we took a walk earlier today and Finn wouldn't stop running.

Finn loves Skippy and because of that, he frequently gets scolded for being a little too playful with her. He insists she wants to be hugged at all times and that he IS being gentle with her, even when it looks like he's trying to ride her like a horse.

As a parent you gotta have some backup ammo to use when the kids are older. And sometimes it's fun to let a little of that go when they're still young. Below is a little bit of that.

And yeah, even a Finn-centered blog post will have to share some space with a Julia update. She's still doing great right now. This coming Mon-Fri she'll be in the hospital getting chemo'd. From here on out the treatment schedule is generally a day of triple-chemo, then a few weeks off, with one more week-long stay in the beginning of May. We're glad Spring is here and we're very much looking forward to June when all of this should be wrapping up.

Sunday, March 13, 2011

Skippy's Birthday

Our baby isn't a baby anymore! Skippy turned one today and boy did we have special plans for her!

Amanda is recovering from a nasty bout of strep throat (here's to hoping none of the rest of us get it) so we took it easy this morning. Then after we finally got around to having lunch, we all hopped into the car and took off.

We drove to the Kinnickinnic and walked the path along the river and fed the ducks, geese, and swans. Skippy liked the car ride and the walk, but the birds were a bit overwhelming for her. She just sat in Amanda's arms and shook.

On the way back to the car, Skippy found a chunk of walnut that barely fit in her mouth, but she was resolved to carry it back the entire way.

Finn found a large chunk of snow that he carried all the way back to where we started so he could drop it off the bridge.

Back in the car, we next went to the grocery store to get Skippy her first can of soft dog food. Her and I sat in the car while the other three went in to get it. Skippy barked at people if they came too close to the car. She wasn't very comfortable there either.

After that we went and got gas in the car and got a car wash. The kids enjoy riding along for car washes, so we thought the dog might too. Nope. That was the worst shaking of her birthday festivities.

We made up for it at home. She got a bath (which she doesn't mind) and then she got to sample the stew-like dog food we got for her and loved it.

Now we're all sitting around watching the Broadway production of Peter Pan. Skippy got brushed and is dozing. Finn is stacking pillows and blankets to make a "machine", like he's fond of doing.

Amanda and the kids are on Spring Break this week. Yes, UWRF has Spring Break this week too, but unlike some people think, university staff don't have off. Julia has still been feeling quite well. She's got just over a week until her five-day hospital stay. We're going to figure something out to slow down Julia's hunger - either ween her off the appetite stimulant or cut back on the night feedings. We would prefer cutting out the stimulant to make it one less drug carousing through her system.

And a big "thank you" to the kids' Grandma Beth and Amanda's cousin Alexis helping out with Julia and Finn and doing some cleaning last week.

Wednesday, March 9, 2011

Jon and Ginny's Wedding

Amanda's brother Jon got married this past weekend. Ginny has been like an Aunt to the kids for years and now I'm glad it's official!

Finn was one of the two ring bearers. Him and his cohort passed the time before the ceremony playing with cars in the pews.

Julia was the flower girl and she looked very lovely in her silver dress and matching cap.

After the ceremony, Julia and Finn killed some time playing DS while waiting for the receiving line to die down. Finn's been wearing his clip-on tie and "official ring bearer" badge everywhere since the wedding.

At the reception, Finn and Amanda's cousin Zach went head to head over who had the better hair cut. I think it was a draw.

Unsurprisingly, Finn found time to goof around with Great-Grandpa Ronnie.

The kids had a blast dancing, although it wasn't always easy to get a decent picture of them in action.

A couple of other special notes to make about the reception festivities: Julia, accompanied by her mother and Great-Aunt Cheryl, sang a rendition of Rainbow Connection for the entire group of assembled friends and family. Instead of clinking glasses to make the bride and groom kiss, they opted to request a donation in remembrance of their friends and family who have died of cancer or are fighting it. The money collected is going to be donated to Minneapolis Children's Hospital. It was a really thoughtful idea and fun because the bigger the donation, the more elaborate the kiss!

The wedding was a ton of fun, but it was tough to get back onto our regularly scheduled week. Our evenings this week have been filled with one thing or another - so it's been hectic. One event tonight was Julia getting blood work done. Her counts are still pretty decent so she should be good to go for her week-long hospital stay starting on Monday, March 21st. She's still been eating great too. We're going to ask the doctor about cutting out the appetite stimulant - if she can keep up the eating, one less drug in her body sounds like a good idea.