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.

The Lovers, the Dreamers, and Me

Over the past few months, multiple people have asked us about leaving comments on the blog, so I thought I would mention it briefly. After clicking to post a comment or to view the comments, one of four choices needs to be made as to how your comment will be signed. There is an option to use a Google account or one of several other accounts, but the bottom two ways work without logging into anything. If you select the option Name/URL, you can type your name to be added with your quote. If you select the option Anonymous, then no name will be left (although you could put your name in the body of the comment if you wish). You may be asked to type in a word to ensure that you're not a robot trying to pass yourself off as human in a daring plot to take over the world.

Julia was able to go to school for almost a full day today. If she's feeling well tomorrow, she'll repeat the feat

This evening we headed to the River Falls clinic for Julia to get a pre-op physical and to get blood drawn for blood counts. She's scheduled to have surgery to have a G-tube put in place on Monday. The surgery is dependent on having high enough blood counts, but it seems like hers will be fine. The plan is that she'll have the surgery Monday, get chemo and give the new tube a go on Tuesday, and then come home on Wednesday.

Since the Fall, Julia has been involved preliminarily in the Westside Elementary School Musical. As soon as she found out that she was going to be part of the song Rainbow Connection, she started singing it constantly. I recorded this video a few months ago and then later played around with it.

Priceless

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.