It looks like Brinley is going to have a new challenge.  I have been giving updates here and there on facebook, but figured since this is Brinley's story for her to read through I should probably post here as well, although honestly I haven't felt up to it since I haven't posted the good stuff lately.  I should have been better at that.

For the last 3-4 months Brinley has been  - not so great.  She has been having terrible headaches and it has turned into a daily headache that gets better and worse, but it pretty much never goes away.  Along with stomach aches that can be just as bad, we started to get concerned.  We talked to our oncologist and he offered to do a scan to see if she may have a sinus infection.  With a high-deductible plan we declined and just treated it as a sinus infection to see if it would help.  It didn't.  We went to our pediatrician who ordered an MRI of her brain, which at that point we didn't care how much it would cost.  The headaches had turned to migraines for her and seemed to be getting worse.  I didn't talk much about it, but last year around this time the same thing happened.  Brinley just felt miserable for months, and then she broke her arm over Christmas so we decided to check her bone marrow to make sure she hadn't relapsed, which she hadn't.  

The scan shows that Brinley has Chiari 1 Malformation.  You can read all about it at that link, but the basics are this:  The back of her skull did not fully develop to the correct size and there isn't enough room for her brain.  As a result of this crowding, part of her brain, the cerebellum, is hanging down into her spinal canal, causing all kinds of symptoms.  

When the doctor first told me this, his words were something like "I don't know much about it.  In fact I've only seen about 10 cases in my 40 year practice.  I'm referring you to a neurosurgeon and it will take a while to get in.  In the meantime you should google it to learn more about it."  That's the first doctor that has ever told me to google anything, ever.  He has always, always been wonderful to us, and this is no exception.  He said she can't endure life like this and put her on a medication he gives to patients who have migraines, and it seems to keep the headaches under control (making it so they don't get to migraines as easily) while we wait for her appointment. 

The day we were told I was so relieved.  It answered questions.  It wasn't cancer.  Nothing could be worse than it being cancer again.  This is not life-threatening.  It explained so many things about her that I have been blaming on the chemo late effects - headaches, stomach aches, frequent bowel movement accidents, decline in handwriting since the start of kindergarten, clumsy/balance issues, behind physically with coordination, blurred vision, etc.  To have answers was like a puzzle was just put together for me and it was such a relief.  Then I started googling and learning more about this condition....and I was so sad.  So sad that there was more in store for her.  I thought the mountain she climbed would be her cancer.  I don't want her to always know pain, and doctors, and a lifetime of medical crap.  I found a support group for parents of kids with chiari and I started seeing posts about walks, and chiari awareness, and it was so upsetting because of the familiarity of it all, except with childhood cancer.  I don't want us to belong to a new club.  So I cried, and researched for a few days and we have decided what we needed to happen for her - see the end of this post for our prayer requests.  

It has been 2 weeks since we were told about it, and I think I have learned everything I need to know, because I keep reading the same information over and over, with a few new things on occasion.  David posted a quote on facebook that could not have been more true - "A worried mother does more research than the FBI".  Children are typically asymptomatic, and it will show itself in adolescence or adulthood, but for some reason Brinley is having symptoms now.  They measure the size of the herneation - meaning how far the brain is hanging in the spinal canal - and anything above 5mm is considered chiari.  Brinley's herneation is 18mm, so I don't think there will be any question when we see the neurosurgeon as to whether or not she has it.  The question will be what to do with it and if it's in fact the cause of her symptoms.  

Treatment options are limited - there is a surgery they can do called decompression surgery that more often than not relieves symptoms, but there is no cure.  It consists of removing a part of the skull to make more room for the brain, among other things.  Sometimes it works, sometimes it doesn't, sometimes it helps for a while and then another surgery is required.  I believe there will be another test to check for any syrinx in her spine, which would determine whether surgery is "necessary".  It sounds like there is a grey middle where the neurosurgeons tend to disagree - when to do surgery.  There is a good chance that if our minds are not completely put to rest with the surgeon here we will be traveling to New York to be seen at The Chiari Institute for a second opinion.  We will see how we feel after our first meeting in three weeks (5 weeks to wait for an appointment is utter torture when you don't know what will happen and you are watching your 6 year old in pain every day, BTW).  I am fully prepared to fight for her if the need arises, hopefully it won't.  I have heard good things about this neurosurgeon.  

Another option is to treat symptoms.  Pain therapy, physical therapy, occupational therapy, etc.  Since there is not a cure, she would be managing symptoms throughout her life.  Right now we are just trying to get her to complete the school day without having to come home to go to sleep.  The thought of her living like this forever is what is truly tormenting my soul.  She has good days and bad days, but I can tell she has grown accustomed to having a constant headache, because she plays through it and only stops when it is severe.  Then she just sleeps until it feels better.  She is such a trooper.  However, she has a sick look in her eyes all the time (the look us mom's know so well), and I am worried she will not be recommended for surgery and will have to live with constant pain. My heart hurts looking at these eyes every day as we wait, and wait, and wait.  We would prefer surgery if it would alleviate her pain.

I have seen terrible stories about this condition.  I have also seen wonderful success stories.  I have read too many stories if I am being completely honest.  Back to what I have decided is most important.  The story that matters right now is Brinley's story.  She will be her own story.  The most important thing is that she will be able to lead a normal life.  Please pray that this will happen for her, whether it's through surgery or through her symptoms dissipating, that she will be able to lead a normal, functional life.   Pray that David and I along with her doctors (all of them) will be able to work together to find the best solution for her.  Pray that we will feel comfort when that solution is presented to us and that we will know that it's right.  Pray that the doctor will listen to us and that we will ask the right questions to get her to the best treatment.  We are feeling very vulnerable in this new world we don't understand.  

She has had some big challenges for such a young girl.  She has had pain as an unwelcome companion much of her life.  She tells me she just wishes she didn't have any more headaches.  I don't understand. I just don't understand sometimes.  I love her.  And it could be worse, I know that.  It could be much, much worse.  Thanks for checking in, and for asking about her.  I don't know where we would be without our family and friends.  I have done a lot of talking about it, thanks to those of you who offer a listening ear.