911, What Is Your Emergency

I know I promised to update the blog more often however we had a bit of a BIG event happen to our family this summer.  This is only the beginning of a life long journey for us but I'll start at the beginning of the beginning.  I will warn you, this post is VERY long and is only the beginning to many other posts about this adventure.  I started this post over a month ago (today is actually August 20th) and have had so many reservations about posting this very private story however I've decided that blogging is going to be our method of journaling.  I've also decided that I'm going to leave the blog public for now but depending on my mood, I may change that in the future :)

Our sweet little Hunter started complaining of headaches on Thursday June 24th.  We tried to control them with Tylenol and that worked well until Sunday.  The poor thing was in quite a bit of pain on Sunday.  I decided to stay home from church with him so he could get some rest.  He got better towards the evening and we got to have a little picnic on the back porch for dinner.  It was a great night.

We decided we would take him to the doctor on Monday because he woke up at 4 am and was throwing up.  I tried to make an appointment with his pediatrician but he had moved and changed his number.  I got frustrated trying to track him down so I opted to take him to our family practitioner who also happens to be a family friend.  He thought Hunter was suffering from pediatric migraines and sent us home with a prescription for Tylenol with codeine.  He told me that if that didn't help control the pain that he'd order a head CT the next day.  He also said that in the 10 years he'd been practicing, he'd never had a child with a tumor.  Well...Hunter made it 3 hours and then started throwing up, but this time it was different.  Hunter had what I thought was a seizure (it wasn't) so I called 911. The ambulance came and they suggested that they transport him to Primary Children's Hospital.  I felt a little weird taking this picture of our son riding in an ambulance but I took it anyway knowing I may regret it if I didn't.

By the time they loaded Hunter in the ambulance he was doing really well.  He was talking with the EMT and was not in much pain.  We arrived at the hospital and while they were moving him from one bed to another, he had his "seizure" again.  The ER doctor ordered a CT scan.  I was able to go in with Hunter during the CT and he was such a tough little guy.  Eric arrived shortly after the CT scan and the doctor came in the room.  I think I knew at that point that we were about to be thrown into a dream.  You could see it on his face.  He asked us to come down to the consult room and I think that was the longest walk down any hall and the hall wasn't long.  The world was in slow motion and I wanted the world to stop...I couldn't handle any bad news.  Bad news didn't happen to us.  He shut the door and broke the news...

Hunter had a brain tumor

He couldn't tell us any details about the tumor because they needed to do an MRI to determine more about the tumor.  Of course this left Eric and I assuming the worst.  We had a rush of several different emotions right at that point.  I was in so much shock at the initial delivery of the diagnosis that I couldn't even cry.  I felt like I was in a dream...when was I going to wake up?  These types of things happened to others...not us. The emotions set in soon thereafter and I'm sure you can imagine....I couldn't control my thoughts, emotions or anything else for that matter.  It is hard to put into words the types of things we were feeling.  All we could do was sit there and hug and try to comfort each other and try to understand how this was happening to our Hunter.

The doctor left Eric and I alone for a bit to let it all sink in.  The first thing we did was pray together.  We prayed harder than we've EVER prayed in our lives.  This in itself was an emotional experience.  We both felt very comforted by the Lord and we knew that we would have the love and support HIM as well as so many others.

We finally got control of ourselves and the doctor came back and asked us if we wanted to see the CT scan.  He brought us out and showed us the tumor and all I remember thinking was "how can he survive this....that tumor is HUGE!".  The tumor was 4 cm (about the size of a golf ball). My emotions rushed in again.  The doctor asked us if we wanted to tell Hunter or if we'd prefer that he do it.  There was no doubt in our minds that we should tell him.  By the time we were done talking with the doctor, they had already taken him to get his MRI.  He was so scared and in so much pain when we first got back there.  They couldn't get him to hold still long enough to do the 45 minute procedure.  It was then that they finally gave him his first dose of morphine and that made a world of difference for him.

This is when Eric and I took the time to call our parents and start breaking this terrible life changing news.  Again, I can't begin to put into words how difficult this was for us.  It was so difficult to even say the word "tumor".  We just took a deep breath after each phone call and pushed on.  It didn't take long before we had a room full of family there to support us.

A doctor from the neurosurgery team came in to talk to us.  Eric and I moved to another room where she could pull up the MRI on the computer.  She went on to explain that they thought the tumor was a craniopharyngioma.  She also said that these types of tumors were benign.  This was the best news we had received all day.  We felt a huge amount of relief but it was short lived.  She went on to explain that this type of tumor is usually attached to the pituitary glad and that there was a good possibility that it would be damaged during surgery.  Neither Eric or I understood what exactly the pituitary gland did in our bodies except for controlling growth.  We were quickly educated and then realized that life for Hunter was going to be so different going forward.  He is going to need daily meds and growth hormones for the rest of his life.  We still found it in ourselves to be grateful because we knew it could have been so much worse.

We were finally able to take some time to talk Hunter about his diagnosis.  We explained everything in as much detail as we knew.  He was so strong and understanding.  He didn't even seem to be scared about anything we had discussed.  His strength was amazing.  He seemed at ease with the diagnosis which was very comforting to Eric and I.< We then started to prepare ourselves for the 6 hour surgery that would happen the next day.  It was a VERY long night.  We tried to make the best of every moment with him.  We tried to be strong and not show emotion in front of him but it was difficult.  Amazingly though, Hunter stayed strong through every moment and seemed so strong and upbeat.

We moved out of the ER and up to the Neuroscience/Trauma Unit where Hunter spent one night before his surgery.  It was nice to be out of the ER where we could have family and friends come and see us more freely.  We had many visitors that came to show support for us as well as Hunter.  We captured a few pictures that night but didn't get nearly as many as I would have liked.  It was difficult to remember to take pictures while we had everything else on our minds.

Mom and Dad with Hunter

Kenadee and Hunter sharing "slushies" :)

My mom (Nana) and Hunter

Eric's Mom (Nancy) and Hunter

My Dad (Papa) and Hunter

Wendy (step-mom) and Hunter

My mom had the opportunity to talk with Hunter alone and she later relayed this story to me.  She asked him what his favorite part of the day had been. He said his very favorite so far was the MRI.  I believe this was his favorite because it was the first time he was given morphine and the opportunity to sleep well.  He must have felt so at peace.  His second was the ambulance ride (always a cool thing for a child).  His least favorite part was when he made me cry.  This absolutely broke my heart when I heard this.  For any of you that know Hunter, he is a pleaser.  He will do anything and everything to make sure that you are happy.  He puts everyone before himself.  Of all things that he had been through this day, the fact that I cried was his least favorite.  I hope to be partly this unselfish sometime in my life.  He truly is an amazing human life and it's amazing to think that the Lord entrusted us to be his parents.  I feel so unworthy.

It was getting quite late but when his brothers and sister got to the hospital, he asked if he could explain why he had to stay at the hospital.  He went into great detail about what was wrong and what they were going to do to help him get better.  He once again showed his amazing strength.  I was attempting to take a picture of Hunter by himself when I accidentally started shooting a video.  Here is Hunter explaining in not such great detail what he was doing at the hospital but I still thought it was priceless.

Eric along with my dad were able to give Hunter a beautiful priesthood blessing.  This was a very moving experience for everyone in the room.  I was reassured privately that Hunter would make it through surgery and that his life on earth would continue.  Later that evening my dad gave both Eric and I a blessing.  Once again I was reassured and given the strength I would need to make it through this experience.  My testimony of the priesthood grew by leaps and bounds this night.  Maybe this was what I was to learn through this experience?  This is yet to be known as I'm sure we have more lessons ahead of us but I have felt Heavenly Fathers hand all along the way.

I took the opportunity to sleep in the hospital bed with Hunter that night.  I found myself just watching him sleep.  I couldn't sleep.  All I could do was lay there and stare at our 9 year old son that was suffering, wondering how life would be in 24 hours and beyond.  I found myself asking why this was happening to such a sweet boy who ALWAYS put others before himself.  Why was our family chosen to go through this?  I was then reminded that all things on this earth are the will of the Lord.  All things are given to us to help us grow and be stronger however I needed to make the choice to push through...and I did.

I finally decided to get up and start doing research on the type of tumor Hunter had as well as the neurosurgeon that would be performing the surgery.  I love google....the info I was able to find was very reassuring.  I learned that Dr Douglas Brockmeyer had a family himself.  He had his own children. He played football in college.  He went to Harvard.  He hiked Mt Everest.  He was an overachiever by my standards and I loved that about him.  He was human with human emotion that had the ability to understand what we might be feeling and going through.  These findings helped me feel better about him as a person.  I know this didn't speak to his abilities as a neurosurgeon but it made me feel better regardless.  I also found information about him as a surgeon.  He had written a book.  He had invented a device along side another doctor to help heal the spine.  He had also written a publication along with several other doctors about different approaches to removing a craniopharyngioma.  Lastly, we were told by several other doctors that he was one of the best in the world.  I felt an overwhelming feeling of knowing that he had the ability to successfully remove this tumor from our little boy and return him back to us safely.