Initial Pathology Results

We met with Madi’s oncologist yesterday to review the initial pathology. Here's what we know:

1. The tumor is a glioblastoma (GBM).  These are very aggressive and difficult to treat, because they tap into blood vessels to make their own food source, they grow through a variety of different types of cells, making it difficult to find drugs that will work, and they infiltrate surrounding healthy brain tissue with tentacle-like growth, making it hard to remove everything through surgery. Complicating Madi's case, much of the 25% of the tumor that they didn't remove is fairly deep in her brain, and the doctors didn't feel comfortable operating on that part given a high risk of permanent neurological problems (speech, motor control) if they attempted to remove it. So it appears unlikely they will try to remove that via surgery, though that option is still on the table. Finally, there is some suspicion that part of the tumor has already crossed over to the right side of her brain. If that has happened, (we just need to watch and wait to see) then that part would be inoperable.

2. From what I understand, brain cancers are different than other cancers in the body in that they do not typically metastasize.  Also, if a brain cancer is high-grade (on a first time cancer like this), it typically originated as a high-grade cancer.  Because of that, this tumor seems fairly new (i.e., months vs. years).

3. Madi's GBM is not a typical GBM for a 11 year old. It has all the characteristics of a certain type of GBM that you normally see in older adults.  I am convinced that it's because Madi is a little adult :).  This result is very puzzling to the doctors who said if they saw it as a recurring brain tumor in a fifty-year-old man, they would know what to do with it.  But in a child?  It's unclear.  In adults, the sub-type tends to have a better prognosis than average, but we have no idea if that will translate to Madi's case. It's going to be a few more weeks before they get all the genetic profiling back, and then they'll recommend a course of action in terms of chemo or immune therapy, or something else.  And there are some really neat things going on with cancer therapy.  Our oncologist told us that at Children's, they try to think of what the standard treatment will be in three or five years and then use that to treat aggressive tumors like this one.

4. The only definite is that Madi will begin radiation treatment on May 15th and will go in daily for six weeks.  She will likely be very tired and may lose some hair on the spot where the radiation will target the tumor.  When the onco panel comes back with all the genetic profiling, then we will be able to start an adjuvant therapy within a few days of starting the radiation if there is one they feel will yield good results. 

5. We are doing about as good as you would expect, so don't ask. :)  Just kidding.  You can ask, but you will probably get the answer I just wrote :). 

6. Actually, we are doing ok.  We knew pretty quickly after the surgery that this was a likely diagnosis and have had a couple weeks to process it before we got the official pathology.  I spent the better part of last week swinging wildly between hope and despair and it was completely draining- definitely not sustainable.  On Saturday, Kurt and I were able to get to the temple (for those not of our faith, this is a different, more sacred place than our normal meeting house where we hold regular church meetings). 

I remember once talking to a man who had converted to Mormonism asking him about why he joined the church.  He told me about a dream he had.  In the dream, he was in a boat with his family and there was a huge storm around him.  His boat was being tossed all over the water and at every wave, his little family nearly drowned.  Then, he looked around him and saw two other boats, both families he knew who were members of the church.  They were also weathering the storm, but their boats were not moving.  They seemed calm and peaceful and the families inside did not seem afraid.  He said he wanted that for his family: peace and calm in the midst of life's great storms.

This is what came to Kurt and I when we went to the temple.  We felt like the Savior settled our little boat.  We walked away feeling almost like we had a bubble of great peace surrounding us.  It has lasted this whole week and continues to buoy me up and keep me going through the minutia of daily life.  I can now talk about all of this without bursting into tears. :) There are so many fleeting things we can put our faith and trust in (i.e., doctor's reports, statistics, the mood of our child, the newest research in medicine, etc...), but none of them offer the peace we felt in the temple that night.  What a beautiful thing to know that this sometimes miserable state of mortality is just a blip in the continuum of our family and no matter what happens, we will be together indefinitely. 

Phew. That was a long post. 

One additional note:  I know I may sound like a broken record and I'm sorry I have to do this en masse, but I want to genuinely thank all of our lovely friends who have offered help, given meals, brought gifts, and sent thoughtful notes and messages to us.  If I have not responded, just know it's not a reflection of your closeness to us and our family, it is because I'm in survival mode.  I rarely text, email, or talk on the phone unless you are the school team or the doctor team.  I was already bad at keeping up with electronic communication, but I'm horrid at it now. I just do not want any of my children's memories of me during this time to be that I was always on my phone/computer.  So, know we are getting everything (and likely shedding a few tears of gratitude for your friendship and concern), but right now do not have the emotional bandwidth to respond. But I hope to soon replace the "nightmares/naps/healing" blocks of my schedule to "thank you cards/fun get-togethers with friends/shower people I love with love" ones instead :). 

Until next post...