Darkness

Darkness

 

The next morning we woke up early.  It was now Tuesday, July 16^th, 2002 and we had to be at Children’s Hospital as soon as we could that morning.  We were told to check into the Emergency Entrance, where a neurologist would examine the MRI pictures.  My uncle let us use my grandfather’s van to drive around in, so we loaded up in the van and followed my aunt to the hospital.  Our spirits were high.  We listened to the radio and joked around with one another during the ride.  At 8:00 a.m. we walked into Children’s Hospital for the first time.

We checked in and waited for Erik to be called back.  The nurse at the desk had told us they were expecting us yesterday.  After about a ten-minute wait we were taken back to an examination room.  Another nurse came in and took all of Erik’s vitals, the normal doctor routine.  We waited some more.  I looked around the room at all the children’s toys, books, even a TV and VCR.  They had everything to keep a child busy and entertained.  Erik studied the room also, and then asked if I could read him a book.  It was a nice distraction as we waited, especially since knots were starting to grow in my stomach.  Micah remained light-hearted, his way to hide his own nervousness. 

Finally, the doctor came into the room.  After a quick introduction, he examined Erik’s balance and his eyes.   He stepped out of the room and returned again with Erik’s MRI pictures.  Then he asked if we would prefer to speak privately. 

“No,” Micah answered, “Erik is strong and he can hear whatever it is you have to tell us.”

“First of all,” the doctor began, “Can you tell me what you do know?”

“We were told there was a tumor growing on the brain stem, and that we had to come here right away for surgery,” Micah answered.

He asked us when we first noticed Erik’s crossed eye.  The doctor listened as we recapped everything up to this point.  He looked towards Erik.  After a few more quick equilibrium tests, he took out the pictures and hung them on the light board for us to look at.

“Well,” the doctor started, as he turned off the lights in the room and turned on the light board, ”We can tell you some more.  There is definitely a tumor growing on the brain stem.  The bad news is that we cannot do surgery in order to remove it…”

Without thinking I breathed a sigh of relief, “Thank God.”

The doctor looked at me funny and turned his attention to Micah, “The tumor is growing on the inside of the brain stem.  We cannot risk surgery, since we do not know enough about the brain stem.  There is good news though.”

Good news?  I thought no surgery was the good news.

“What’s that?” Micah asked.

“The tumor is growing length ways along the stem, so the fluid from the brain that travels to the rest of the body had not been blocked off.”

Micah and I must have looked lost at this point.  I looked at Erik, who was rocking back and forth in a rocking chair smiling as he listened to the conversation.  It must be a relief to him that he would not need surgery.

The doctor noticing our lost looks.  He turned on the lights in the room and pulled out a pad and pen.  He quickly drew a picture of what the brain stem looked like and where it was located in the brain.  Then explained how important it was for the fluid to be able to travel through, it was what kept all the body’s functions working properly.  Since Erik’s tumor was long and lying on the edge of the stem, it would explain why our only clues were the crossed eye, slight speech problems, and some balancing issues on the right side.  The doctor was actually pleased that Erik could still walk. 

As the doctor continued, the knots in my stomach were growing tighter.  I looked over at Erik, still listening and smiling at the doctor.  I looked closer at the MRI pictures hanging on the board.  No surgery is supposed to be good news. I began to think.  This isn’t good.  That thing looks huge!  Oh God, please, Erik has to be all right. You said he would be all right.  You gave me peace… this does not look all right!”

I tried to refocus on the conversation.  The doctor was explaining the reasons for not operating to remove the tumor.  Apparently, the brain stem is one area that medical science has not been able to touch.  Since it is the central nervous system to the whole human body, exploration was not possible without causing serious damage to the patient.  The patient would most likely die.  The risk was too great, and therefore the brain stem remained a mystery.

“So what is our next step?” Micah asked the doctor.

“Our medical board of doctors is meeting today to go over new cases and decide on treatment options.  I will be presenting Erik’s file to them.  We will then set up a time for you to come in and meet with our neurology team upstairs, who will oversee Erik’s treatments.  They will give you further details of what your options are.”

We thanked the doctor as we walked out of the room.  The doctor escorted us to the sixth floor, which was the Oncology Ward, where we would come back for the meeting.  Everywhere we looked there were waiting rooms full of game systems, toys, play centers, Lego and train sets, televisions with VCRs.  Staff members would be sitting with groups of children do coloring or some other craft project.  We saw children in wheelchairs of all sizes, a few lying on beds as nurses would push them around.  Some children had crutches or leg-braces and others were walking around with hats on their heads.  It felt like we were in the middle of those Dateline stories about hospitals.  Only to be hit with the reality of it all.  Their ages ranged from newborn babies to fourteen or fifteen year olds, and now Erik would be counted among them.  It was hard not to stare and wonder why this child was here or that one was lying on the bed.  There were obvious ailments, and then the not-so-obvious ones.  I was feeling very overwhelmed.

The doctor left us at the Oncology Ward with one of the nurses.  He had to head back to the ER, never to be seen by us again.  We were shown which doors were the best to come in through and how to find our way in the maze of hallways.  By the time we walked out of the hospital it was well past lunchtime.

 

We decided to stop for a quick bite to eat before heading back to the house.  My family would be showing up soon, and I think we needed to have some time with just the three of us.  It wasn’t until 6:00 p.m. when my parents and my sister’s family showed up.   The hospital had already called to tell us our meeting was scheduled the following day at 1:00 p.m. with Dr. Hallahan.  After everyone was settled in we sat around and speculated about how the meeting would go.  Worries were voice, and everyone was on edge.  I wished I could have been one of the children at this point playing in the backyard without a care in the world.  My positive outlook and peace about the situation was quickly vanishing.

Micah was even more on edge.  He tried to make light of everything, but could night hide the fact that it was starting to get to him also.  He called his family to let them know about our initial visit, but felt he just didn’t have enough information to give them.  What little information we had only fed the fear and other emotions we were all experiencing.  We all just felt helpless and confused.  Wednesday afternoon seemed years away.

As we talked we began to make a list of questions to ask the doctor.  This helped us all to focus a little more.  Most of the questions were pretty general, but I supposed they still needed to be addressed:

1.     Will Erik’s eyesight be corrected?

2.     Is this tumor what’s affecting his speech?

3.     Was this hereditary?

4.     How does this affect Erik’s schooling?

5.     Are there going to be times of quarantine with radiation?

6.     Where in Alaska can radiation treatments take place?

7.     How large is the tumor?

8.     What was the cause of the tumor?

9.     How long will treatments last?

10.  What is Erik’s chance of survival?

 

Wednesday morning came as if any other day.  We all gathered to have breakfast and then rushed around to get twelve people ready for the day.  Everyone wanted to be at the meeting today, so we loaded up the vans and headed to the hospital.  I felt it would be good to have more people there in case we forgot something that was said or did not pick up on an important piece of information.  My parents and sister followed us to the hospital, and this time I did not try to talk anyone out of it.

Right before we all left Barbara called the house to talk to me.  She had been praying to God about our meeting today and was given a scripture to read.  Barbara felt she needed to pass it along to me.

“I call heaven and earth as witnesses today against you, that I have set before you life and death, blessing and cursing; therefore chose life, that both you and your descendants may live; that you may love the Lord your God, that you may obey His voice, and that you many cling to Him, for He is your life and length of your days,” Barbara read it to me over the phone, “It’s found in Deuteronomy 30:19-20, I hope it brings comfort to you.”

“Thank-you, Mom,” I replied, “I’m sure it will.”

 

I still had a strange sense of peacefulness in my heart as we drove to the hospital.  I was noticing all the worried looks on everyone else’s faces, but I did not seem to feel the concern I was seeing.  Micah, on the other hand, was even harder for me to read at the moment.  That was more alarming to me.  If I cannot read my husband’s expression after nine years of marriage, then something was terribly wrong.  His body motions and facial expressions were very inconsistent, even the tone of his voice was hard to read.  I kept running over what Barbara had spoken to me on the phone and I knew Erik would be all right.  I knew God had everything under control; therefore we could only win in this situation.

At the hospital it felt as time slowed down.  The sun was shining through the windows of the waiting room as Erik, Jessica, Hannah, and Jedidiah played with the toys.  It seemed pretty busy today, but everything was still moving in slow motion.  We tried to talk lightly among ourselves, but no one really had much to say.

Finally, we were called back to the conference room.  As we began to find our seats, we decided the children should wait in the waiting room.  The hospital arranged for two volunteer staff members to show up and do some arts and crafts with the children.  Once the children were gone we settled into our seat.  Micah and I sat at the right side of the table, then my mom and dad, my sister, and finally my Aunt Michelle.  Dr. Hallahan, his nurse, and a counselor for the hospital came in and sat facing all of us.  Quick introductions were made as the meeting began.

Dr. Hallahan began the meeting by describing the tumor to everyone and showing Erik’s MRI pictures again.  He pointed to the location of the tumor so we would have a better understanding of where it was.  He called it a Brain Stem Glioma and told us it was considered a slow growing tumor.

Slow growing? I thought to myself.  It’s huge!  Oh God, look how big it is!  This cannot be slow growing.

From that point on I can honestly say I do not know everything that was said.  My mind only picked up a few phrases here and there, and processing everything was going really slow.  I knew people were talking and could tell who was speaking, but all the voices seemed muffled.  I just stared at the awful picture hanging on the wall.

“We don’t know the cause of this particular tumor,” the doctor was saying, “surgery is not an option without causing further damage to the patient.”

I looked over at Micah and watched as his crossed out the questions we had brought with us, or wrote one-worded answers to them like ‘no’ or ‘not likely’.  I held a notebook in front of me to write down information, but couldn’t concentrate enough to write.  The nurse quietly took my notebook and began to jot down information.  I tried to stay focused on what was being said.

“There are two possible treatments right now along with radiation.  One is pretty new and not all the side-affects are known at this time.  The other one has been know to cause hemorrhages in 40% of the tumors it is used on…”

“Well, that one is definitely out.”  Micah responded.

As Micah continued to ask questions off the list and Dr. Hallahan answered them I watched my family as they quietly sat around the table.  Every now and then my aunt would ask a question.  She wanted to know about the connection between Jessica and Erik’s tumors, since they were both in the same location.  According to the doctor they were two totally different tumors.  Where Erik’s ran along the inside of the stem, Jessica’s was located on the outside.   My sister sat there very quiet, but her face spoke volumes to me.  My dad was looking sullen, but I could not read his expression.  My mom, on the other hand, was an open book.  Her voice cracked, hands shaking, and she would dab her eyes.  Every now and then I would hear my mom sigh or gasp.

Concentrate.  I kept telling myself.  You need to know what is going on.  Thank goodness Micah is being strong right now.  I was starting to feel numb.

I looked at our list.  We were almost done.  Dr. Hallahan was explaining how long they would last and where they would be administered.  Micah’s leg started to shake violently under the table.  Out of habit I placed my hand on his leg to stop it, but Micah grabbed my hand and squeezed hard.  I squeezed his hand back and he kept hold of my hand, but his leg was still shaking uncontrollably.

Two months? I felt a surge of overwhelming hopelessness as the time frame sank in.  Will Erik live after this treatment?  Will he survive and the tumor just go away? I can’t leave Tasha for two months.

I pulled the list of questions over to me and wrote one word down for Micah to see.  Survival?  Micah began to shake his head.  His hand went to cover his mouth, and his eyes looked up at the ceiling.

“I… can’t,” he whispered to me, “I can’t ask that.”

I nodded in understanding.  I could not ask it either.  Somehow it seemed to come up in the conversation.  I was not sure how, and I do remember hearing it being asked.  Dr. Hallahan’s expression dropped.  I knew this was not good.

NO!  My mind screamed.  No, no, no… NO!  A hard dull pain began to grow in the pit of my stomach and move its way to my chest.  I could not move as I heard the doctor’s answer.

“One of four make it past their first year of diagnosis.  After that their chances narrow to one out of ten survive the first three years, and one out of twenty make it past their fifth year.”

My mom let a cry out and moved her hand to cover her mouth.  Tears streamed down my eyes uncontrollably as I closed them.  Micah let go of my hand and covered his face with both of his hands.  I looked over at my sister and aunt both had tears forming in their eyes.  My dad slightly bowed his head and sat there silently.  I was trying desperately to process what I just heard.  Erik would die.  There is no stopping it.  Our son is dying.

Micah composed himself enough to ask another question, “I… I know this… may sound dumb, Doc,” he paused, “But just so it is clear in my head.  What… what you’re telling me is… that my little… my son is dying?” he managed, “And there is nothing you can do to stop it?”

“Yes, Mr. Reams,” Dr. Hallahan quietly answered, “I’m so sorry.”

The room was still.  No one moved or said anything as we tried to compose ourselves.  I fought to hold back the tears, but they fought harder to be released.  Micah broke at the doctor’s answer, but fought to quickly compose himself.  He grabbed hold of my hand again.  After a few moments the conversation started again.  We talked of the experimental drugs again.  There were openings available to begin treatment as soon as we decide.  In the meantime, the hospital would make arrangements for the radiation treatments to begin over at University of Washington Hospital.

As the meeting came to a close Micah spoke up to the group, “Under no condition is Erik to know he’s dying.  He needs to have no concerns or worries, and let him enjoy life as long as he can.”

We all left the room quietly.  Micah held my hand as we walked down the hall towards the waiting room.  He squeezed it reassuringly, and took a few deep breaths.

“Don’t let Erik seeing you upset,” he instructed, “try to be strong for him.  It’ll be hard, but we have to act as normal as we can.”

I nodded in agreement.  Micah then quickened his steps to the sound of children playing.  He let go of my hand and moved on ahead of the group.  I kept the slow pace to give myself a little more time before I faced Erik.  Forgetting my family was closely following behind me.  I turned the corner and began to walk straight for the waiting room.  I took a few steps and suddenly stopped.  Panic suddenly took over and I turned away right into my sister’s arms.  My tears wouldn’t stop.  My sister held me tight and reassured me everything would be all right.  Some nurses came up to see if I needed to go into a room for privacy.

“Mommy!” I heard behind me.  I could hear the footsteps running towards me.

Quickly I dried my eyes. I looked at Brenda and nodded as she asked if I was all right.  I put a smile on my face and took two quick breaths before turning towards Erik.  His smile filled his face as he held up two wooden cars that had been colored and drawn on.  My smile grew as I looked at them with delight.

“Look, Mommy!” Erik said with excitement, “Look what I made!  There was another kid in our group who made this one and he gave it to me.”

“Wow, Honey!” I smiled, “These look great!  Did you have fun?”

“Yeah,” he answered looking into my face, “Are you all right, Mommy?”

“Yeah, Mommy is just fine.”

Erik handed me one of the cars and we held hands as we finished walking into the waiting room.

It took a few more minutes to get everything gathered up before we headed to the cars.  Erik wanted to ride with Hannah and Jedidiah and hopped into the van with Brenda and my parents.  Leaving Micah and I to ride back alone.  The sun was beating into the windows.  I knew it was hot in the car, but I could not feel the warmth.  Everything was a blur.  Micah turned on the radio to have some noise.  It was still too quiet of a ride home.

 

Back at my uncle’s house, while the children played outside, all the adults sat in the living room.  I wanted to crawl into bed and stay there, but my dad came and found me and told me to get up.  Micah had called his parents with the news, hoping they would have something encouraging but found no comfort.  Albert had to get off the phone quickly when he heard the news.  So, we found ourselves sitting in the living room not saying a whole lot.  Every now and then a tidbit of information would be spoken to make sure it was what everyone else had heard.

Finally my dad spoke up, “I don’t know what I can say or do to help Erik and make everything better.  Sitting in that room and hearing the news that was given my mind immediately turned to King Hezekiah,” he looked around the room at each of us as he spoke, “When the prophet came and told the king he was going to die, Hezekiah immediately turned his face to the wall and cried out to God.  He was then granted fifteen more years of life.  Now, I’m not saying God will grant Erik life, but I do believe that right now our family needs to turn our faces to the wall and cry out to God for Erik.”

Everyone nodded in agreement.  It was the only thing we could do.

It was time to turn our faces to the wall…