The Beginning

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Most people would just see some food and drinks on a table, but this, this was the beginning.  That is Adler’s red wheelchair right there too holding all of our items as we sat in the waiting room on the 5th floor of Lurie Children’s Hospital in May of 2014.  We had taken Adler to the ER there for his extreme pain and headaches.  After several hours and many doctors checking him out, they decided to do a full brain and spine MRI.  We were somewhat relived since no one had looked at his head yet and he was suffering from so many headaches and dizziness and vomiting.  He had even fainted twice by this time.  Our ER here at home didn’t ever check his head.  It was so discouraging but we knew we were in the right place at Lurie.

It was late in the evening and we had been there all day so we were hungry.  I must say that ham sandwich was one of the best I have ever had even though I didn’t eat much because I was so nervous.  We sat in the corner making a little dinner area for ourselves.  The nurse that accompanied us up to the waiting room while Adler was taken back for his sedated MRI got us drinks and napkins.  I love hospital ice.  It’s the tiny ice that gets your drink really cold.  I ate as much as I could and we sat listening some cartoons that had been left on in the empty waiting room.  We were the only ones in it.  The lights hummed and the horns beeped outside and we could see some traffic go by from the 5th floor windows.

We got our first pink wristbands with Adler’s number on it.  They have TV’s that are like monitors so you can watch for updates on where your child is at.  I looked at that TV about 20 times wondering when he would be in the recovery area so I could see him again.

We were absolutely terrified about what they would find, yet we wanted them to find something since all we had gotten for months was bullshit answers and no help.  I had called over 30 hospitals in the United States by this time and no one believed me when I would explain his pain and his symptoms.  It was awful and I was exhausted and scared and manic to try to find him help and relief.

About and hour or so into the MRI they came and told us we were being admitted to the 19th floor which is the neurology floor, or as Adler calls it, the Flamingo floor.  All the floors have an animal that goes along with it.  So we went up there, got in his room and we waited some more.  I looked around and was just so scared.  I was cold and sweating at the same time.  I wanted him to be ok.  I wanted us to be ok.  I wanted everything to be an “easy” fix and we could go back to “normal”.  Those things didn’t happen.

Long story short, that waiting room, was like a gateway to our hell yet a savior at the same time.  Because with out it, we would have lost our son.  With out that 2.5 hours in the tube, he would have died.  His brain was drowning in it’s own fluid.  He had 3 times the normal amount of water on his brain.  He had emergency shunt surgery and Dr. Dipatri is our hero.  He and Adler have a forever bond now and Dr. Lulla too whom we met on our next trip there a couple weeks later where we learned of the other waiting room, the surgery waiting room on the 7 th floor when he had his biopsy that lead us to another not easy fix and capsized our lives completely.

When your child is diagnosed with a brain tumor, and then brain cancer, your life stops.  I mean full stop.  It was like we were driving at high speeds and the car was just jammed into park.  There were no airbags.  Everything shattered.  We already knew he had hydrocephalus and adrenal insufficiency and now this.  Oh My God.  Our son has brain cancer.  He has tumors in brain, and his spine, and that’s what all pain was from?  No.  Just No.  And 15 months of chemo and more pain and heavy narcotics and vomiting and hair loss and weight loss and sickness and more pain and the emotional toll was nearly more then I could bear.  But I did it.  We did it.  I tried to remain graceful and positive but it wasn’t “easy”.  It was hard.  It’s still hard.

I will never get used to being in that waiting room.  The MRI anxiety starts days before we even leave for the Chicago.  I hate it.  I feel like my brain is hot wired and may actually run right out of my own skin.  I can’t sit still and if I do, my foot is tapping.  I can’t be with out some form of distraction.  Thank God for social media even if it is a disaster and full of political bullshit right now but it takes my mind off of the reality that is our life for short moments.  Books and TV help too and music is ALWAYS on.  I don’t think there is enough lavender or Epsom salt to relax me the day before we leave.  I could inject it and I would still be bouncing my leg!  Xanax is good for bedtime especially with the nocturnal panic attacks that love to come on when I get overwhelmed.  Anxiety is a bitch.  It really is.  I have descried the pre MRI days much like a storm that build inside of me and when it hits, I have no where to take cover, it just hits.

But, this time, this time he’s trying it awake. He doesn’t like the sensation of forced sleep and I understand that.  He doesn’t like the smells of the gas even with the essential oil that he chose for the mask that smells like me and he doesn’t like waking up all groggy and crabby and he always pukes.  It’s not fun.  So, I will be in with him while he lays still and watches a movie with the double mirror contraption over his head so he can see the screen at the end of the tube.  I will sit next to him in the plastic chair with the hospital blanket since it’s cold in there but Adler will be warm in the tube.  He will have headphones with the sound of the movie piped in and I will have ear plugs to help drown out the banging of the giant magnet going around him.  It’s like a very loud broken washing machine. Or a Nine Inch Nails song.

So this is a new process for all of us.  Daddy will be with my parents while they wait and I will be with Adler while he is in there. But it will all begin in that same waiting room with the lights, cartoons and coloring books.  We will walk down that hall nervously holding his hand and they will take us to the prep area where he will change into a gown.  I will have tread socks for him and he will sit with his iPad until they are ready and this time I will get to walk past that yellow line with him into the MRI room.  No kisses and hugs goodbye watching him bravely walk away from us.  I will go with him this time.  I will witness my son being brave.  I will witness the process of them getting him all set up to check the status of his tumors.  May they still be stable and may he lay like a statue all tucked and strapped in like a little mummy.  It will not be easier just because I am there.  Only different.  So it’s like a new beginning to the same thing I guess.  Back where we started but not how we started.  I am glad I get to be in there with him.  A new tradition added to this journey filled with so many necessary ones already.  So when we pack up and head out tomorrow, I will be ready to sit next to him instead of waiting in that room, eating with my parents in the cafeteria, and hitting up the gift shop and then sitting in silence with Aaron in chapel.  That was what we have always done during that 2.5 hours before.  Now, my hand will touch his foot while he lays still and watches a movie and I will be right there when he needs a break or anything.  Right there next to him.  My son, the strongest person I know.

 

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