the diagnosis//part 2

An ER nurse led us to a room.  It seemed busy, but calm.  Nurses in plain blue scrubs were everywhere.  I am sure there were doctors in the mix but I couldn't separate them.  Hailey laid on a bed while the Mr. filled out insurance paperwork and documents allowing them to do whatever tests were necessary.  I spoke briefly with the ER doctor about her symptoms.  A nurse started in IV and I was surprised at how brave Hailey was.  She was laying on the hospital bed, as calm as if she had just woken from a nap.  I was seeing everything in slow motion.  I am sure angels were with us at that very moment.  Because I felt a calmness I know wasn't coming from me.

We just wanted answers.  What was causing the swelling in Hailey's head? Why was there so much fluid?  Was she going blind?  Where do we go from here......

She hates needles.  If there was ever a time for her to be brave, it was now.  A male nurse came in to draw Hailey's blood.  She just laid there and let him do his thing.  She didn't cry.  I held her hand and she squeezed mine so tight.   He left with a handful of blood-filled vials and she began to sleep.  All of the commotion was wearing her out.  We waited.  It wasn't long, I am sure, but it seemed like forever.  Another nurse came to escort us to the basement level to do a CT scan of her brain.  The walls were painted cinderblocks.  It was tacky.  And quiet.  The basement was so quiet.  I appreciated the quiet.  It didn't take long and the tech was extremely nice.  Everyone was nice.  I could only guess that they really loved their job.  That working with children was way better than working with grumpy adults.  We went back to our designated ER room after the scan was over.   She was tired.  I could see the energy slowly leaving her thin body.  She laid down on the bed again.  After a short wait, the results were back from the CT scan.  The doctor asked if we wanted the good news or the bad news first.  I wanted the bad news first.  I always want the bad news first.  She explained that there was a lot of fluid surrounding her brain.  So much fluid, in fact, that the sutures surrounding her brain had not fused any of the bones together.  It was the same fluid that was behind her eyes.  The good news was that they couldn't find any masses in her brain from the scan.  We sighed a very small breath of relief.  The CT scan didn't give us definitive results.  We knew more needed to be done.  That this was just the beginning of what would be many tests.

The next test was an MRI.  I've had one before.  I  knew what was involved.  Any masses or tumors would be more visible with this kind of test.  Again, I went with her.  Again, to the basement.  I tried to keep the conversation casual with the nurse that escorted us to the testing room.  Hailey rode in a purple wheelchair and I walked briskly to keep up with the nurse as she zig-zagged her way through the basement corridors.   I tried to show Hailey that there was nothing to worry about.  I was trying to be brave for her.  The MRI tech gave me a locker to put my wedding rings in so that it wouldn't pull me toward the machine.  I sat in a chair in the corner of the room near a table of magazines while Hailey was prepped for the test.  She selected music to listen to through a set of headphones while I put disposable earplugs in my ears.  MRI machines are loud.  She closed her eyes and the test began.  A small mirror above her head was angled so that when she opened her eyes, she could see me.  I smiled at her every time her eyes met mine through the reflection.  She was so brave.  I am sure angels were with her then, comforting her in a way that I could not.  I looked at home decor magazines and sat in a white chair in the corner while the machine took images of her brain.  Half an hour later, it was over.  We were escorted back to our room in the ER.  I didn't say much on the way back.  Hailey was quiet too.

We got back to the room and the Mr. was waiting for us.  He looked anxious but I didn't have anything to say.  It was just another test.  The results were not immediate so we had to wait.  Again.  Hailey looked really tired.  Her poor sixteen year old body was giving up.  Maybe she felt like she could let go of being brave on that hospital bed.  The nurse came in and checked on her.  She had a fever.  He left the room and returned with a mask on and some tylenol.   How could she possibly have the fever?! She was fine just a few minutes ago.  My heart was starting to race.  She fell asleep.

There was a knock on the door.  Amidst all the craziness, the Mr. had gotten in touch with the missionaries serving in the hospital area.  We wanted Hailey to have a priesthood blessing and the Mr. needed another worthy man to administer the blessing.  One of the missionaries is from Virginia and we shared shared stories about our time there.  Virginia holds a very special place in our hearts and in some small way, it gave us comfort to talk to that 19 year old boy.  We shook hands after our 10 minute visit together and they left as quietly as they had come.

We waited.....

The results took a little longer this time.  Realistically, I'd say it was about 1/2 hour before the doctor came back into the room.  And her face did not look the same as it did when she gave the results of the CT scan.  Her face was serious.  Almost sad.  Her eyes looked sympathetic.  She didn't ask if we wanted the good news or the bad news.  She got right to the point - that the MRI results didn't show anything abnormal in her brain.  No cysts.  No tumors.  Nothing was wrong with her brain.  Then she paused.  And carefully told us that there was something wrong with Hailey's blood.   Her labs had come back & Hailey's white blood cell count was extremely high and her red count was low.  My mind started to process what she was saying and I asked her what that meant.  She said she couldn't tell us exactly what was wrong, but that a doctor was on her way to explain it to us.  My mind started to process this, too.  She was a doctor.  But another doctor was coming to tell us what was wrong with Hailey's blood. A special doctor.  A doctor that would be treating Hailey from here on out.  My heart sank and the tears wanted to flow but nothing came out.  I really didn't know what to say.  I could tell the Mr. was processing all of it just was I was.  The ER doctor knelt down by Hailey's bedside and held her hand.  She had the look of a worried mother and I knew that her heart was breaking for Hailey, me and the Mr.

A few minutes later, the anticipated doctor came in the room.  She politely introduced herself, shook our hands and walked the few steps from the door to to Hailey's bedside.  Our ER room was small.  She knelt down and explained that something was wrong with her blood, that her white count was very high.

And then the question came out: "Have you ever heard of the word leukemia before?"  Hailey shook her head yes and then no.  She had heard the word before but had no idea what it meant.

The Mr. was sitting next to me.  I looked at him & he looked at me.  Did she really just say what we think she just said?!  We were both scared.  Our eyes clearly showed it.  I had only seen children with leukemia on St. Jude's commercials.  None of them had hair and they were much younger than Hailey.  

"Am I going to die?"  It was the only question she asked.  The doctor assured her - and us - that Hailey would live a long and somewhat normal life.  This type of leukemia was not going to kill her.  That is all Hailey cared about.  That is all we cared about.

The doctor - Hailey's new doctor - explained that Hailey's white blood count was 609,000.  A normal child's white count is roughly somewhere in the 6,000 range.  That's a huge difference.  Huge.  The white cells were everywhere.  So many that her spinal fluid had nowhere to go but up into her head.  That was the cause of the excess fluid & blood behind her eyes.  She was not going to go blind.  Her doctor assured us Hailey's vision would eventually return to normal.  But what would not be normal from here on out is the life Hailey is going to live.  The doctor explained that some red blood cells look different from others.   Some are called blasts.  Simply put, they are white blood cells that have not formed correctly.  They multiply quickly, take over the bone marrow and prevent red blood cells, healthy white blood cells and platelets from producing.  It turns out that Hailey had some blasts in her blood but not very many - not enough to diagnose her with a more serious type of leukemia.  More specific tests needed to be done in the hospital lab, but the doctor was sure Hailey had chronic myeloid leukemia or CML.  I have a chronic condition - one I have had to live with since I was four years old and will have to live with for the rest of my life.  I know that routine doctor visits are just a normal part  of life.  And now these visits were going to have to be a regular part of Hailey's life.  Chronic meant she was in this for the long haul and we were going to be cheering her on & supporting her every step of the way.  Living with CML was going to be her new normal.

"New normal" - it was a term we used a lot in the beginning.

All of the motherly-type feelings started swelling up in me and I knew Hailey and our family were going to be tried like never before.  I texted my mom and typed the words that were so hard to say in person - "Hailey has leukemia."  I would have lost it if I had to speak those words out loud.  She replied and said she was coming on the next plane out.  We quickly made arrangements for a family friend to pick up our other kids from school.

Hailey was being admitted as a patient and our room on the 5th floor of the hematology/oncology wing was ready.  As we walked out of the room, the doctor kindly asked if I had any questions.  I paused and replied, "I really don't know what to ask right now."  My mind was blank.  I didn't know anything about leukemia.  She assured me that Hailey was going to be watched over and taken care of during her time at the hospital.

The ER doctor and nurses in the common area were quiet.  Their eyes looked sad and sympathetic as we walked by.  They knew that we had just received hard news.  They new that we were hurting inside.  They knew that our lives had just changed in a way none of us expected.  I tried to muster a smile, as if to say thank you, as we walked toward the elevator.  Hailey was escorted in a wheelchair.  The Mr. & I walked behind her.  Hailey was still being brave.   I was trying to be brave too.  But I was in denial.  My daughter does not have cancer.  My daughter does not have cancer.  My daughter does not have cancer.    Maybe if I said it enough, this nightmare would disappear.  No one ever said the "c" word.  It is not a nice word.

It was December 4, 2014.

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