It's been four weeks since Brinley's surgery, but I wanted to be sure to update here about the process.  First things first.  Brinley is a superstar.  She is amazing.  I am in awe of her, truly.  She took brain surgery like she was getting her tonsils removed.  I am going to give the details of the surgery in this post, however this has been an amazing spiritual journey for us and suffice it to say we have had some very personal experiences through all of this and I feel so blessed..

2/20/13 - Surgery Day

We had a very calm few days leading up to the surgery.  We all felt good about it and knew it would go well.  That all goes out the window however when you have to hand over your baby to a surgeon to operate on her brain.  Her other 4 minor surgeries during cancer she was only 2-4 years old, and taking her back to the OR was a much longer process.  This time she was all smiles, no nerves at all (although she giggles when she is nervous, so I'm sure she was nervous because she was very giggly) so they didn't give her any medications to help the separation anxiety.  They were running behind so they checked her out and rushed us to the waiting room.  Dr. Brockmeyer came out for a brief consult, said we will never know if it was caused by her cancer treatment because her spine looked normal, but it is possible, asked us if we had questions and that was that.  I felt flustered and could only muster up "I know you do this all the time, but we really love this girl.  Please take good care of her".  We wondered what he does to prepare to operate on a child's brain.  Does he get up, shower quickly because he's running late, rush into the hospital and just go to work?  Does he think or meditate first?  Does he utter a prayer?  Or is it just like David would log onto his computer to get started, he just starts the operation?  These were some of our thoughts.

The anesthesiologist came out and walked us down the hall to the OR doors and said this is where we part ways.  We expected it would be like her other surgeries, and it caught us off guard.  That was a good thing because I didn't even have a chance to cry, just a quick kiss and hug and she was gone.  They redid the waiting room and have areas sectioned off now, and I was so grateful for that.  We found a back corner and held each other for a few minutes and cried (well, I cried).  They told us it would take about 2 1/2 hours for the surgery, so David began the timer.  We couldn't read or concentrate on anything else.  The worst part was wondering what was happening the same moment as we sat waiting.  Had they cut into her yet?  Were her vitals okay?  What if she woke up?  How much was she bleeding while we sat there?  Would she need a transfusion?  Was her body handling the trauma?  Had he removed part of her little skull yet?  Had he removed part of her brain?  What do they do with it, just throw it away I guess?  What does it look like?  Time went so slow, every minute was an eternity.  Thankfully, Dr. Brockmeyer came out early, at an hour and 45 minutes!  Seeing him took my breath away and I couldn't wait another second to hear what would come out of his mouth when he spoke.  Please, God, let him say she is okay was all I could think.  The surgery had gone perfectly.  Perfectly.  She would not need to go to ICU, just to recovery and they would call one of us back when she woke up.  We gave a silent prayer of thanks and waited.  When I went back she was in a lot of pain.  It was hard to keep it together because she was just whimpering "mommy, mommy, my neck, my neck".  They got some pain meds in her and she closed her eyes, although she stayed awake because she was nodding her head when I talked to her.  She had blood dripping down her mouth from her loose tooth being removed and Vaseline all over her eyes so we cleaned her up.  I couldn't see anything because her hair was a matted, sticky mess behind her head.  I didn't even want to ask about it.  The nurse finally asked if I wanted to see it.  I carefully lifted her hair and saw where they had sewn her up.  I sent David a picture of it and of her.  It looked....gross.  Bloody and gross.  I just wanted to cry.  It was torture for him to not be back there, but I was so grateful he allowed me to go back.  I know it was difficult for him.  He is a very involved Daddy.

When she was awake and stable they moved her to her recovery room.  She was still in pain, but they finally got it under control.  Once she had some good meds in her, she was amazingly happy.  She was singing and laughing and being so funny.  She was moving much more than we thought she would be, and at one point she just sat up and about gave David and I a heart attack.  That first day was fabulous.

2/21/13 - Thursday

The next day was her worst day.  She was in a lot more pain since the local anesthetic in her neck had worn off.  They don't bandage the wound at all, so she was just trying to get comfortable.  The only thing that was comfortable was to lay right on the incision.  She said it didn't "bump" when she was laying on it.  She got up to go to the bathroom and did great with a lot of help from Dad.  We had a few visitors and that helped a lot.  Her nurse said she seemed so great we could try getting a wheelchair and going for a walk to the play room.  We went down there and she played for a few minutes, but then began having a lot of pain.  The rest of the night was bad.  We had avoided morphine until that point (I know, she is amazing....) but she was just hurting so bad.  They gave her morphine and she finally fell asleep and slept all night.

Two of Brinley's favorite things, a big pretzel, and grandma!

2/22/13 - Friday
Friday was a great day.  She was feeling a lot better and was walking a little by herself.  She was getting tired of the hospital and getting bored.  We were hoping to leave the next day, but she wasn't drinking and they would take her off fluids, and a few hours later she was feeling awful and they had to hook her up again.  Dr. Brockmeyer stopped by that morning and said she was doing unbelievably good, about 10x better than most patients with decompression surgery.  I believe this is because her medical innocence was lost years ago and she didn't have to experience that again.  It was a blessing that she was already used to poking and prodding and blood draws and IV's and pain.  I felt like she started ahead of the game than most children who have to experience the medical world for the first time with this surgery.  I was so proud of Brinley.  I don't know why this felt different than her cancer, I guess because she is older and can express herself more.  She was brave and strong during her cancer treatment, but I was amazed by her in a way I had never experienced.  She will not be brought down.  We can learn so much from children.  Not only Brinley.  It is a characteristic of children.  It tells us in the scriptures to be more childlike, and I thought I understood that fully, but I was able to see another angle to it.  She didn't let daily struggles get her down.  There was no moping or feeling sorry for herself.  She is bound and determined to be happy.  I love that about her.

She was able to take a shower, and as you can see she really needed it.  We tried to stay away from the site, but being able to get some of the gunk out of her hair felt so good.

2/23/13 - Saturday
Saturday she was walking around the room by herself.  Our biggest concern was not having access to IV pain medications if she started having a lot of pain.  She had not done well with the Valium and wouldn't take it, so pain was a worry since the muscle relaxer was important with her neck muscle pain. Brinley, however, was ready to go home.  We had been given the okay by Dr. B to go home that day, but David and I felt afraid to leave the security of the hospital.  By 1:00 she was practically begging and we conceded.  Home felt so good.

When she got home we had a visit from one of Brinley's besties, Kodiak of the Utah Jynx.  He has become like a part of our family (along with his family) and has always checked in on Brinley.  We love him.  It had been a hard day for her so it was the perfect time for a visit to lift her spirits.

2/27/13 - Stitches came out.  She was nervous but as always, very brave.  She didn't cry at all.

 2/27 - One week post-op.  Brinley had a few rough days.  There was a particularly sunny day where Brinley could not go out to play (she isn't supposed to ride bikes, run, jump, swing, etc. until she is cleared for activity).  She had a meltdown and was just so sad.  She cried and cried "I just want my old neck back!  The neck that was soft and smooth and didn't hurt.  And I could run and ride my bike and play with my friends!  I don't like brain surgery!"  It was a hard day.

3/5/13 - Two weeks post surgery

She got a virus that was a setback with her recovery and her mouth had been covered with sores and she had 4 days of very high fevers, but it passed.  Her neck looked like it had been a month.  They hardly shaved any hair so unless she has her hair in pigtails you wouldn't even see it.

Four weeks post surgery:  It has been hard.  She started school last week and did really well, but she is frustrated with progress.  She is still so tender all over her head and neck.  She is still having stomach aches, so we are moving forward with figuring them out.  She had her oncology visit and we are doing a "cleanse" this weekend to get everything out and see how she feels after that.  She has lost 3 pounds, which is a lot when you only weight 42 pounds.  I am hoping as she feels better and returns to full activity she will seem less frail and thin.  The headaches have still been around, though not as often.  She has felt kind of crummy the last couple days.  It is discouraging, but we have to remember to be patient.  She started out so fabulous that we had very high expectations for recovery.  This will be a long road and it's very hard for her to be patient.  The novelty of having a cool scar has worn off and she's not happy about the idea that it will always be on her neck.  I know she will get used to it.  The nice weather had been very difficult for her because her friends can go play outside and she has so many restrictions it's not much fun for her to be outside.  She often says that she wishes she didn't have brain surgery during the times she feels discouraged.  Then sometimes she is so funny, while doing homework when she figures something out she'll say "I can't believe a girl who just had brain surgery can do this."

Although she complains about it, she does love to show off her scar to anyone who visits.  It's a big scar, but it's in a great place.  And as my friend Crystal says, "Never be ashamed of a scar.  It simply means that you were stronger than whatever tried to hurt you."  She has a few to prove that.  She is a strong girl and I can see how her experiences are shaping who she is.  She has had so many challenges, and in so many ways that is just hard to watch.  She is learning every day though and I have noticed something inside her that has changed.  Her eyes water when we talk about adult things that children don't generally need to talk about.  She understands that life is hard, but good.  She learned that younger than most.  She understands that "fair" is now always what we think it is.  I just love her zest for life.  

As far as the success of the surgery goes, like I said, we will need to be patient.  I have noticed a difference in handwriting, balance and coordination, and things like cutting and coloring.  So that is great news.  I just hope and pray that she will "feel" better than she did before surgery.  It's hard to separate from post-op stuff and what will continue to be a problem.

Sorry the update is so late.  I really wanted to have it here for her, even though most of this is old news.  This was her experience and I hope she will appreciate being able to look back through it and see what she's overcome.  

After 5 very long weeks of waiting we had our visit with Dr. Brockmeyer, the Neurosurgeon at Primary's.  He showed us Brinley's image and told us the basics, which we already knew, that she does in fact have Chiari 1 Malformation.  He was not at all surprised that she is having the symptoms that she is having, and while I was over prepared to plead her case to him, it was unnecessary. He said that her brain is acting like a cork and blocking her spinal canal so the flow of CSF fluid is interrupted, causing her symptoms.  He stated that based on her image and her symptoms, he strongly recommends decompression surgery and was very confident that it would be helpful to her.  We felt very comfortable with him as her surgeon.  We know he has done hundreds of these surgeries and is competent.  He's not the kind of guy you want to give a big hug to afterwards, and we know long-term we may have issues, but he knows what he is talking about and that is more important to us right now.  I felt a little rushed and had to interrupt several times as to not be rushed through and leave more confused than we came.   I was expecting that though, so I didn't mind.  He was extremely confident, and that really put us at ease with the decision to do the surgery.  He did, however, give us the choice between two surgeries.  One is a bony decompression, where part of the skull is removed to make more room for the brain.  It has a fairly high success rate, however Brinley's herniation is a large one, so he said we would have a better chance of alleviating her symptoms with the decompression with duraplasty.  It has more risks involved, but also has a higher success rate, and a less chance of having to re-do a brain surgery, which we don't want.  It involves removing the part of the skull to make more room, then opening up the dura, a membrane surrounding the brain, shrinking the cerebellar tonsils, and patching the dura with another material to make more room for spinal flow.  It is more involvement with the brain, however it would be devastating if we did the surgery only for it to not be successful.  We scheduled the surgery for Feb. 20th and have a week and a half to decide.

He also wants to take a look at her spine to make sure she doesn't have a syrinx, a pocket of spinal fluid built up in her spinal canal.  He will also check for tethered cord syndrome and make sure she does not have a leak where she received dozens of lumbar punctures during her cancer treatment.  If she does it would have to be repaired as well or it could potentially cause the same problem again.  We are hoping it is just a typical chiari 1 malformation and nothing else is involved.  That MRI is scheduled for Tuesday.

David and I both felt good about this during our meeting.  Although I have been having a difficult time when I think too much about it, I still feel that we felt good about it because it is right.  We still have decisions to make about the surgery, but feel we will be guided to what is right for Brinley.  We could not do this without that guidance and peace of mind.  I know that the Lord knows everything, and without being able to turn to someone who knows all to help us we would be lost right now.  My faith is stronger than ever.  We are in a good place spiritually and that is a huge blessing.

The next day I had anxiety about the decision to schedule the surgery.  A good friend with similar headaches as Brinley has told me if she had the choice to relieve her pain without the extra decisions of a family needing her, school she would miss, financial ramifications, etc.; if she could think of only HER she would do it without a doubt.  That helped so much.  It's so difficult to make a decision like that for someone else, especially your own child, but I imagined Brinley as an adult, trying to make the decision to have a surgery that her parents were too afraid to get her, and having a family to figure out, finances to work through, a life to put on hold, and I realized that we would be doing a great disservice to her by not trying to help her now, when she doesn't have all those things to deal with.  Thank you for following a prompting to tell me that.  You know who you are.

Brinley has a mixture of feelings right now.  She is so excited at the thought of being pain free and is literally counting down the days to surgery.  She knows it will be painful and hard, but she is ready for it.  She is nervous and asks a lot of questions.  She asked me tonight if you can die from surgery.  So I know she is nervous and thinking about it.  She is so, so brave.

We will be fasting on Sunday, February 17th for Brinley and would welcome anyone who would be willing to join us.  We feel at peace, however there are a lot of things that can happen and a lot of stress involved right now for all of us.  Jade is very worried about her little sister, and said that she liked it better when she had cancer because it was easier.  I think her being older and understanding things better has put some extra anxiety on her that she didn't experience during Brinley's cancer treatment.  Taylor is very quiet about it, but Taylor doesn't share her feelings as easily and I know she is worried.  She tries not to think about it.

Brain surgery sounds big to me.  Too big to think about, so I keep it factual for now.  As it nears I know my nerves will get the best of me.  I pray with all my heart that this will all be okay, and that Brinley can live a pain-free life.  The NS said that it is amazing when these kids realize what life is like without pain.  As David and I look back, we realize she has been in pain for many years of her life.  We just didn't know this was contributing to it.  It makes us both sad, that she is so familiar with pain.

Thank you to those of you who have asked and cared so much.  Thank you to those of you who have looked into my eyes and said it will be fine.  I really helps, even if it's just words.   I truly hate that we are asking for prayers again for Brinley, it feels so redundant.  Yet she needs them, so we ask for them.

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.