An Ingredient Away From Hummus

Since Julia's appetite is still taking a leave of absence, we give her a lot of leeway when it comes to what she wants for meals or snacks (she had a ham and cheese sandwich for breakfast this morning). She's always been a healthy, non-picky eater, so we know she wouldn't just ask for junk food.

For lunch a few days ago, she didn't show any interest in the couple of leftovers we were having so we asked her what she wanted. She wanted an English muffin. Sorry, we told her, we don't have any. Then she said she wanted garbanzo beans. Again we told her that we didn't have any and she would need to choose something from the leftovers that we had out. She got mad and stormed off to her room. A few minutes later she came back up and started rummaging through the cupboards. It wasn't long before she was standing, hand on her hip, giving us a dirty look, holding up a can. Garbanzo beans.
So she ended up eating a bowlful of room temperature garbanzo beans. She seemed quite satisfied with herself.

LOH

After a two-hour drive (rather than the normal one-ish) to Minneapolis, Julia had another round of chemo that she, again, handled great. Also, a number of her blood counts, after falling every week, are now holding steady or starting to rise. Finn came along for the first time too and so he was able to get some more firsthand knowledge of what his big sister does.

The oncologist shared with us the results of the final outstanding test and unfortunately they weren't favorable. Before I get into what the test actually found out, which isn't the easiest thing to understand, I'll explain what the results mean for Julia.

Julia's chemo treatments will need to be increased in strength. A couple of new drugs will be added to the regimen and because these drugs have potentially more serious side effects, they'll be administered as in-patient procedures rather than the out-patient procedures that Julia has been having. She will need to stay at the hospital for five days at a time while the new drugs are given to her once a day. She will most likely have four of these hospital stints over the course of her treatment and the first one will probably be during the week after Christmas. The weekly treatments in between these hospital stays will remain pretty much like they are now. Our understanding is that the chemo treatment will still have the same duration, ending at around the end of the school year. But, like we found out today, plans can change.

The test was looking to see if the cancer cells were LOH - loss of heterozygosity. LOH means that there is a mutation on two specific parts of the cancer cell's DNA and because of this there is an increased rate of relapse. And the doctors respond to a higher rate of relapse by giving different and stronger chemo drugs.

My understanding of the prognosis is this:
From looking at historical data, doctors can see that a Wilms' tumor kid with a favorable histology has an extremely good prognosis. A Wilms' tumor kid with a favorable histology and LOH (that's Julia) still has a very good prognosis, but it is different enough to be considered statistically significant. So once this data was studied and this difference noted, the hypothesis was to increase the strength of the chemo treatment (Wilms' tumor treatments have quite low amounts of chemo as treatment) to counteract the higher percentage of relapses that were seen with LOH cases. Studies are currently underway to test this hypothesis.

Julia was looked at to be part of one such study, but because of the drainage tube and the abnormal presentation of her case, she didn't qualify. Interestingly, all that means is that her data and outcome will not be factored into the final results of the study, but she is getting the same treatment as the kids who are participating in the study.

I read an interesting thing today which illustrated how today's cancer treatments are built on the knowledge gained from the outcomes of yesterday's patients. The prognosis of Wilms' tumor patients has been good and remained steady for the past 20-30 years at above a 90% 4-year survival rate. But what has changed is that during that time, the amount of treatment and the severity of the treatment has gone down significantly, i.e. the doctors have figured out that they can get the same positive outcomes without putting the patient through nearly as many hardships because this type of cancer responds very well to low doses of chemo. And now they've discovered that LOH instances don't respond as well and so they're tweaking the treatment to account for this variation which will hopefully bring those numbers back in line with the non-LOH numbers.

While driving home from the clinic I was processing what we had been told. I found a strange metaphor filling my head and so I explained my thought to Mandy:
Life gave us lemons and we made lemonade, albeit a sour batch. Now it's like we just found a turd floating in our lemonade.
"Why a turd? Why not...a bug?" my wife asked.
You can just flick a bug out of your lemonade, but with a turd you need to go get a ladle to scoop it out and then put in some chemicals to make sure it's still safe to drink.

Inappropriate analogy? Maybe. A way to make me smile about a shitty turn of events? Yup.

With a Sprinkling of Pixie Dust...

Snowed in, then Out

Last week we were given tickets from Children's Hospital to see Disney on Ice on Saturday. Well the weather fouled up those plans as there was no way we were going to get more than a few blocks, even if we wanted to. Below is a picture taken of the snow drift piled up against Julia's window.



Luckily we were able to transfer our tickets to Sunday and since the roads were decent, we still got to make it to the skating show. All four of us enjoyed it and it was great looking over and seeing big smiles on the kids' faces. The tickets for the Saturday show were in a suite with other people from Children's Hospital. Our transfer tickets were in the same suite but we were the only ones in it, which made it kind of lonely, but the extra space was nice.

I had been disappointed of our change of plans because the Packers game was going to be on TV (the Metrodome's loss was our gain), but now I was going to be away from home for the whole thing. I was able to see the score during intermission and the very ending of the game when the show was over. At that point, I was glad I missed it.






Finn got mad a few times when we wouldn't buy him one of the spinning, flashing toys. Julia explained to him, "Finn. They walk around and yell because they're just trying to get you to buy their stuff." The kids did get cotton candy though, as we couldn't hold off ALL the demands.

The above two pictures are without Finn because he insisted he was NOT getting his picture taken. We actually snagged someone to get a family shot of us and he threw a fit and wouldn't cooperate for it.

The show consisted of Mickey and gang traveling to different places while on vacation. So the parts that they acted out were from The Lion King, The Little Mermaid, Lilo and Stitch, and Peter Pan. They were all really neat to see, but Peter Pan was our favorite.

Our schedule this week is chemo on Tuesday. Julia is still doing well. She's feeling tired at times and still doesn't have much of an appetite. Since she's already lost a few pounds (from where, I'm not sure), we try to coax her towards high calorie, high fat foods and are more lax when it comes to snacks. Those sorts of rules don't always make it easy for Amanda and me to eat healthy though!

Vincristine and Doxorubicin and Pentamidine, Oh My!

Yesterday morning Julia had a triple dose of drugs for her chemo treatment. One was her regular weekly chemo drug, the second was a new chemo drug, and the third was an antibiotic (drug names in the same order as in the title). We had still been fighting the twice-weekly antibiotic that she's been taking orally and so we opted to get a similar drug intravenously via her chest port. It's needed every three weeks and we squeeze it onto the end of a chemo appointment. She'll continue to take it for a few months after her chemo is completed. It's used to prevent PCP, a type of pneumonia caused by a fungus found in human lungs. When a person's immune system is compromised, like in people with AIDS or undergoing chemotherapy, the pneumonia can develop, while in healthy people it just sits there not causing any harm.

I like reading up on information about the drugs, but try not to dwell on it too much afterward; the potential side effects are scary. It's kind of a given these days though. Radiation treatment increases the chance of stomach and ovarian cancer. Each chemo drug comes with such a litany of fear-inducing side effects it would make those TV commercial drugs blush. And while it's great that Julia's body is handling everything so well, that's not any sort of indication that the treatments are wiping out every last cancer cell. If her body is strong enough to ward off the side effects, who is to say that the cancer cells that were created by that same body aren't on the strong side of things too and able to resist the treatment? Too cynical? Honestly though, I don't dwell on that sort of thing, even if I can't stop my mind from meandering down that path from time to time. I'm a realist who doesn't like surprises, so every outcome I can think of runs through my mind. I'm resigned to the fact that we've got to continue with things as best we can and just hope things turn out on the good side.

Julia stayed home from school after her Monday treatment, but went today and felt decent all day. Mandy had fun at her book club last night and brought home a nice variety of Christmas cookies. After supper tonight we all had a hefty sampling of them (and I might have had a slight sampling before we ate too...).

Julia got a cool gift today - a friend made her couple of super cozy ponchos and hats!

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.