Tuesday, December 14, 2010


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.


Anonymous said...

I just wanted to say it just lifts us up every time we see that smile on Julia's face. Your family has been inspiring during this ordeal. I think the thing that impresses me the most (besides the obvious love and commitment to those beautiful kids) is the normal life you appear to be keeping for them despite what has to be total chaos inside yourselves. Having been through quite a bit as a family, we know how much that takes! Keep up the great work, rest when you can and don't forget to breathe! More prayers are being prayed for your sweet family than you can imagine. Have a peaceful and blessed Christmas and a New Year filled with promise and hope! Love Alex and Kris Aikens and family

Duane said...

Torey, Amanda, Julia, Finn and Skippy --- I love you and wish that I could provide an in-person daily kiss and hug. Every waking moment I am thinking of you and thanking God for such a lovely family. - Gr. Duane

Anonymous said...

God has given you amazing strength, and many family and friends supporting you. I want to thank you and the family and friends. It is the strength of many that make us one. Love, Grandma Beth

Tyler said...

Anna, the kids and myself are all praying for all of you. I like your analogy, it is quite fitting.