The second wait is over

We had our followup visit today.  We are sorry it took us a while to post, we are still processing the information.  The doctors reviewed the pathology yesterday and we now have a good idea of what this is and generally how it will be treated.

It is a: Grade III mixed astrocytoma-oligodendroglioma

What does that mean?  

First, the grade: a grade 3 glioma is half way between being benign and malignant. It is slow growing and is very likely to recur in the future, potentially at a higher grade. 

Second, the type: mixed astrocytoma-oligodendroglioma.  The tumor is primarily made up of the olgodendroglioma cells. This type of tumor is rare, occurring in only 1% of tumors.  We originally thought it was only the olgodendroglioma type but  now we know it is mixed cells.   They are still waiting for some genetic marker test for the P1Q19 gene to see what exact treatment we will take. This  genetic marker can work in our favor as well for outcomes. 

Treatment:  this will likely be a combination of both radiation and chemotherapy. Once we return to Seattle, we will talk with a neuro-oncologist there to determine our exact course of action. 

Because of the likelihood of recurrence, this will be something we will be monitoring with doctors for the foreseeable future. However, due to its rarity and since we don't know when, if, where, or what it will be when it does recur, it is difficult if not impossible to predict what will happen in the future. 

The first MRI scans will begin a month after surgery.  The scans will keep a close eye on any new growth and tell us when and how things may change. The scans will inform the treatment.  At this point our doctor is recommending aggressive radiation to focus on the remaining  tumor cells in my brain. As we said before, brain tumor cells will not grow as different kinds of cells, only as brain tumors. There are various factors that influence the prognosis and treatment. One of the most positive markers is being less than 43 years old which works in our favor. We reviewed various outcomes and data from other cases with our doctor and we will continue to assess data as we receive it.

Our doctor recommended this site for looking up additional information:  American Brain Tumor Association. There is sooooo much information and it's hard to process and understand. As we grasp it we will try to keep you informed. 

We received clearance to fly sometime next week back  to Seattle.  The kids really need to get back to school and routine.  I can't drive for a while-- after I am cleared by the Washington Dept of transportation, perhaps up to 6 months. And of course Paul needs to get back to the office. I also can't dye my hair for 4-6 weeks---I'm so gray! It's killing me!

I also had the staples taken out today which really didn't hurt at all and I was very very nervous about that. 

I'm still incredibly exhausted and feel the need to rest a lot. The doctor encouraged me to listen to my body and let it heal but as soon as I feel able,  to resume my normal lifestyle.  I have no physical or travel restraints in any way after I go back.  

We cannot express how grateful we are for the amazing outpouring of love and prayer.  We know we are surrounded by your nurture and we feel it tangibly.  

We are still working through the information from today and we aren't ready to process it all. Instead we went to the Capitol Grille and had good wine and steak for lunch followed by a Target run for Legos and sweats!

Paul and I have always had the most awesome of bonds and we continue to praise God  for our relationship.   We spent the evening with family and we are snuggled by the fire while the kids are enjoying a sleepover.  We don't know exactly what's in store but we know we will need to lean on you through these months and we thank you in advance for your patience and prayer and for the times we might not be ready or able to share. We love you all so much! 

Paul & Stephanie