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!

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.

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.

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.

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.

Musical - Now with all new video!

This past Thursday and Friday evenings, Westside Elementary School's annual musical took place. The musical was a compilation of songs from the musicals they had performed over the past twenty years. Julia was in the Rainbow Connection number from The Muppet Movie

Even though it was an exhausting two days, Julia really enjoyed the experience. She was all smiles and talking non-stop about it. Julia was also fortunate to have her grandparents drive over to see her performance: Duane and Beth came for the Thursday night show and Dayton and Colleen came for the Friday night one.

Here is the video from the 2nd performance. It starts with the readers giving some background about the piece and then the singing. Julia is on the end of the front row.


At the end of the show, they brought all the performers back up on stage. This is a video of Julia walking up to the stage for the final ovation. She's being accompanied by her best bud, Jane. The video starts out dark, but soon Julia's bright green hat can be seen going down the steps toward the stage.

Julia's white blood cell counts were completely fine on Thursday. She has chemo tomorrow and we're very curious to see her counts. Without another benchmark, we don't know if the number they were at on Thursday was what her body had leveled off at or if they were continuing to plummet from their medicinally artificially inflated high point from the week before. We're also very anxious to see what Julia's weight is at. She's been eating quite well and been getting the extra 650-700 calories each night via her feeding tube. I don't see how she can't have gained some weight.

After tomorrow's chemo, Julia will have three weeks off before a five-day, fun-filled, chemo-tastic hospital stay. If all continues to go as planned, we'll be in the home stretch of the last few months of treatment. It feels really good having an end in sight. The flip side is that, at this point, I can't even imagine a setback that pushes dates back. I'm very ready for this to be done.

Launch the Pig

The tube. Julia's newest contraption to be surgically installed on and in her body is working out decently well. Over the past week, the g-tube hasn't been bothering her nearly as much as the skin around the surgery site heals. She's been getting 20-24oz of formula via the tube each night, adding around 700 calories to her daily intake. During the day we expect her to eat normally. Well, "normally" for her has its own meaning - being a cancer kid, she doesn't enjoy food nearly as much as she used to, so she's allowed to break the eating rules if she wants. This morning for breakfast she had pineapple and saltines.

The blood. At last check, her blood counts had jumped through the roof thanks to the daily injections Julia was getting to stimulate white blood cell growth. The dr wants her off of the drug now to see what her body can hold the counts at without the artificial boost. She gets checked again on Thursday.

The Chemo. She's had her first break from chemo for the last few weeks and we've loved the recuperation time. This coming Monday is a triple dose day. Her blood counts need to be high enough for this batch, so Thursday's blood work will be pretty meaningful. After this upcoming chemo, we have another three week break before a planned five-day hospital stay (that'll be number three of the four long ones).

Schooling. Aside from the medical front, Julia went back to school today! She had a great day and had loads of stories to tell (including one that inspired the title of this blog post). Her school's musical is Thursday and Friday evening this week and she's hoping to be feeling well enough to participate. She'll be dressed in green as one of the frogs for the "Rainbow Connection" number. There's a dress rehearsal on Wednesday, so that may be an indicator of how she feels about it.

The images. Aside from being too rambunctious at times and painfully stepping on Julia's tube, Skippy still likes her quality "sister time".

Finn posed on the couch and then did one of his fancy jump spins.

Choose to Dance

Today was a beautiful day with Julia.

I had the honor of introducing her to about 200 people at my school (about 2/3 of my 8th grade students and several staff members). The Camelot House at Oltman Middle School is preparing for a service project for the Children's Hospitals of Minnesota. In a few weeks, they will be making blankets, craft kits, and much more to donate to children and their families who are staying in the hospital. The purpose of my presentation today was to share the stories of 3 different families who have experienced the journey of pediatric cancer. Julia came to school with me this morning to share her story through a video we put together. As an added perk, she ate lunch with me in the teacher's lounge!

Post G-tube Update

The plan:
Go into the hospital Monday morning. Julia have surgery to have the g-tube put into her stomach. Recovery for a day. Try out the tube Tuesday and Wednesday. Come home Wednesday.

The reality:
Julia has been in more pain and for longer than was expected. Fevers and unexpected low blood counts caused us to need to remain in the hospital. The tube works properly and Julia is slowly getting used to it. She remains quite apprehensive about anyone getting near it (because bumping it a little still causes pain) but she's able to clean around it with a q-tip now - we'll take the baby steps when they're offered.

The tube has allowed her to start getting 12 hours of extra feeding at night. The amount has been adjusted a little each day because sometimes it makes her feel funny. What she "eats" through the tube is a vitamin and fiber fortified baby formula-type of liquid. She'll still be expected to eat during the day and we can be flexible with the nighttime feedings. The fact that she can eat normally is very nice because it allows for that flexibility. Once Julia goes back to school and is up at 6:00am, it won't really be feasible to start a 12 hour feeding at 6:00pm when we may not have even finished supper. Besides the extra calories, Julia has already heavily utilized getting liquid meds in the tube. That's a huge relief for a kid (and her parents!) who refused any oral meds.

So the point we're at now is that Julia's fever's been gone for over 48 hours and the pain comes and goes. She's been constipated for days and that is slowly working its way through with the help of three meds. Her blood counts are still low, but not low enough where they wouldn't send us home. On that front, it sounds like we will be going home today.

While at the hospital, we find ourselves making little updates frequently via Facebook because we don't get the time for a more detailed report here on the blog. It's just easier that way for us and still gets some info out to some people. If you're on Facebook and not already friends with one or both of us, feel free to send a friend request to Amanda or me.

Tears in my eyes...

I hesitated to make a blog entry tonight. This has been an emotional evening. For those of you who haven't heard, Julia had a feeding tube placed around noon today. She has been stoic all day and that brings back memories from the early days of our cancer journey. It was a slap in the face reminder of Julia's high pain tolerance. She held herself together quite well for most of the day, but the past couple of hours have been more emotional. She's doing all that she can to be still and not move her tummy area. I think I finally got her relaxed and resting comfortably for a while. It could very well be a long night ahead.

I'm probably rambling, but this definitely helps to get things out of my mind. It's like I tell my students...and Julia quite often lately...that we have to do whatever we can to get our emotions out. It sometimes hurts to cry or to talk about what's on your mind, but we just gotta do it. Maybe journaling and listening to relaxing music on the iPod with Julia is what's going to help tonight. It's rather deceiving to be listening to music that one would hear at the spa, then look up and see your child hooked up to tubes and wires and whatnot. I think a real day at the spa sounds pretty awesome right now!

Please do not feel bad for us right now... Just lift us up in prayer and love, like you've been doing all along. I think I just need a little extra boost this evening. I look forward to the peace that I know that you all will bring as I go to bed tonight.

Thanks.