Monday, October 21, 2013


(You can get up-to-date with today's post by clicking here TEN YEARS)


It was ten years ago this past Sunday, October 20, that this sweet little girl entered the world.

Faith Marie Johnson made her anticipated, but six-week early arrival.
She arrived at 3:19 PM and weighed 5 pounds, 6 ounces.

She was beautiful.

One of the first things I noticed about her was her delicate little features.  So dainty.  So very tiny.

Being in the hospital for a couple of weeks had given me much to much time to think about things.  One of the things that had me troubled was what if I didn't have enough love to go around?

As soon as our little girl arrived that fear of not having "enough" disappeared and I realized that God was overflowing my heart with an abundance of love...plenty to go around...with more for good measure!

Tears of joy flowed from my eyes.

Once we were able to we called home.  My parents were staying with Parker and they knew that no one...absolutely NO ONE...would know what sex the baby was until Parker found out first.  My mom answered and immediately handed the phone to Parker.

We told him he had a baby sister and her name was Faith Marie.

We could hear him say to my parents, "I have a sister!  I have a sister!"  My mom said he just kept walking around the house saying, "I have a sister!  I can't believe I have a sister!"

More joy and tears.

Soon they would be bringing Parker to the hospital...and one...absolutely NO ONE...was allowed to meet Faith until Parker met her first.

It was getting late in the day so they got Parker dressed in his PJs knowing he would most likely fall asleep in the car on the way home.

When they arrived at the hospital, we were waiting for our little guy and after showering him with hugs and kisses, brought him to meet his new baby sister.

Here is there first meeting...Parker in his dinosaur PJs and Faith with ink still fresh on her teeny-tiny little feet:

Now lets jump ahead to ten years ago today...October 22, 2003.

Faith was two days old.

I was scheduled to go home later that day but because Faith was six-weeks premature we knew she would be in the hospital for approximately two more weeks.

It was bittersweet for me.  Wanting to get home after spending over two weeks in the hospital myself.  Wanting to get home to Parker who had been bounced around while I was gone.  But I wanted to stay with my baby, too.  I didn't want to go home without her.

I told myself that two weeks would go quickly and soon our family would all be under one roof.

The morning of October 22 I was anxious to get to the neonatal intensive care unit (NICU) to be with Faith.  I couldn't wait to hold her, rock her, nurse her, change her, smell her...take in every little tiny little thing about her before heading home and not seeing her until the next day.

Nursing her was a challenge.  It wasn't the easiest task for me to accomplish in the first place (I made it two weeks with Parker until finally moving on to bottle feeding)...but I really wanted to make sure I gave it extra effort this time for our little early bird.

But preemies take a little longer to figure these things out.  I didn't help that there was usually a nurse standing over my shoulder offering suggestions, tips and "you can do it!" words of encouragement...all just making me the more nervous and anxious over the whole thing.  I wanted to be in a room, by myself, with my baby and feeding her.  But that just wasn't the case.

I remember being sent back to my room to "rest" for a while and to allow Faith time under the lights used for jaundiced babies.  I was slightly frustrated about the nursing and and very tired so I decided to close my eyes.  I thought nursing was the toughest thing on my list right then.  Little did I know that thought would soon be proven wrong...very, very wrong.  My eyes were barely closed when the nurse came to tell me that soon a doctor would be arriving to check Faith's eyes.

This was the plan from the very beginning.  Since Scott had bilateral retinoblastoma (cancer of the retinas) as a child (significant treatment, radiation and loss of an eye) and two other cancers to follow in his adult life, and Parker was diagnosed at four months with the same retinal cancer (treated within twenty minutes using laser treatment to destroy the tumors), Faith needed to be checked as well.

I honestly never even worried about the fact that bilateral retinoblastoma would be an issue again.  I mean, come way would our children be two-for-two with this disease.  Right?

The nurse walked me down to the NICU and I waited for the doctor to arrive.  When he did he suggested I wait in the waiting room and the exam would be very quick.

So I sat down, grabbed a magazine and waited.

He was right.  It was only about fifteen minutes later when I saw him walking down the hall towards me.  A nurse was with him and the looks on their faces told me already what they would soon tell me out loud.

In a compassionate, soft and quiet voice, the doctor said, "Mrs. Johnson...I...I'm so sorry.  But your daughter has extensive tumors on both of her eyes.  She has bilateral retinoblastoma.  She has cancer."

The nurse was there for a reason.  To catch me as I fell to my knees, sobbing, "NO!  NO!  NO!  This is not happening again!  You have to be wrong!  You're WRONG!"

"No.  No, Mrs. Johnson.  I'm not wrong.  I'm so very sorry."

I sat on the floor and cried.

And the nurse sat next to me.

I'm not sure how long it was before I was able to collect myself enough to call Scott.  He was home with Parker and getting things ready for me to come home that evening.  My mom was going to be taking care of Parker that day.

When Scott answered the phone I just remember sobbing into the phone that he had to get to the hospital quickly.  That Faith had cancer.  Soon doctors would be meeting with us to come up with a plan for how and where Faith would be treated.  I begged him to get there as quickly as he could.

He barely said a word because I know his heart was breaking.

I hung up the phone and went immediately back to Faith in the NICU.  I just sat in the chair, holding her, rocking her, kissing her tiny little cheeks and fingers and toes, telling her how much I loved her...and crying.

The NICU became eerily quiet.  All the machines and people coming and going and the voices over the intercom were suddenly whispers.  The doctors and nurses approached me cautiously...did I need anything?...they were so sorry for our news...was there anything they could do?  They didn't know that I just wanted them to make it all better.

It seemed like hours before Scott arrived.  He came to Faith and me and we pulled the curtains closed around her crib and we stood there alone with our baby, holding her, telling her how much we loved her and crying.

It wasn't long before the doctors came to us to tell us that Faith would be transferred the next day to the NICU at Fairview Riverside Hospitals where specialists from the University of Minnesota would be waiting for her.  They would develop a treatment plan for her that would begin as soon as possible.

By this time it was getting to be early evening...and they told me to go home.

Go home.

How could I go home?  How could I leave NOW?  Why couldn't I stay?

Because there was nothing I could do that night.  Because the next several days would be filled with treatment plans and meetings and things that would be difficult to make sense of.  Because the next several days were going to be exhausting...and I needed rest.

Go home.

I don't remember leaving the hospital.  I don't remember the drive home.  I do remember walking into the house after being gone for nearly three weeks and my mom standing in the kitchen holding back tears.  My sister-in-law had come over and she was doing her best to cheerfully welcome me home.  Parker was so happy to have mommy home and wanted to know when he could see his sister.  When would she be home?  We weren't sure yet, buddy...but hopefully very soon.

I sat down on the floor to play with Parker and he crawled up into my lap and again...the tears started to flow.  Then they turned into sobs that wouldn't stop.

My baby had cancer and there wasn't a damn thing anyone could do about it.

The next morning (October 23) we left early for the hospital.  Faith was being transferred by ambulance right away that day so plans could begin for her treatment.  I rode in the ambulance with her and Scott followed behind.

By mid-morning she was settled in.  By the time they let us be with her she was hooked up to IVs and other machines...but the first thing I noticed was that in the midst of the chaos someone had taken the time to put a tiny pink bow in our beautiful little Faith's hair.

By the end of that day we had met many doctors.  The retinal specialist.  The oncologists.  NICU doctors and nurses.  They had contacted several hospitals around the country...St. Jude's, Baylor, John's-Hopkins, make sure their treatment plan was on the right track...and it was.  The plan was to treat the tumors with lasers and chemotherapy.  Yes...chemotherapy.  They had not given a child this new chemo before, hence the consults with other hospitals.  This was all to begin the next day (October 24) four of Faith's little life.  She would be put under anesthesia for a thorough eye exam and extensive laser treatment to the tumors.  She would then be taken to surgery for a central IV line to be inserted into her chest for the chemo and medications to run through.  She would also be kept under anesthesia while given an MRI of the eyes and brain.  The day would end with her first chemo treatment.

While meeting with the retinal specialist that afternoon, the outlook was bleak.  "No," was the answer to our question of whether-or-not our baby was going to die.  But she could lose one or both eyes.  Both eyes could possibly be saved, but she could be blind.  She might have some developmental setbacks.  Plan at some point in the near future to start learning braille.  The doctor told us it was actually a blessing that she arrived early because had she gone full-term it was very likely that both eyes would have HAD to been removed or that she WOULD have been completely blind.

Blessing.  It was now becoming very clear that this little girl was much stronger than her 5 pounds, 6 ounces.  We had no idea, however, how very strong she was going to prove herself to be!  We also didn't know that she was going to live up to her name, as Faith means, "believing in the things you cannot see."

At this time in our life we were Catholic.  We called our church.  The new associate priest was sent to the hospital.  Father Joseph.  It was a very large church and we had met him about a month before.  When seeing that I was pregnant I remember him kindly asking how I was feeling and if he could offer a blessing to the baby.  He did.

When Father Joseph arrived we went to a private waiting room and filled him in on what had been happening.  He listened.  He asked questions.  He asked how we were doing.  He let us express our feelings...and that's when I told him I was mad.

He asked, "Mad at who?"

"God," was my response.

Then he said something I was shocked to hear.  He said,

" know what, Jeanine?  After hearing all this...Scott's story...Parker's story...and now Faith's story...I'm a little mad at God, too."

Then he said,

"But you know what?  Just like you and Scott have a relationship and at times will get upset or angry with each other...having a relationship with God can be the same.  But who better to be able to take it and understand than God?"

We talked some more and then he left.  It was getting late and the next day was going to start early and end late.  Scott and I went back to Faith for a while before being told once again to go home and get some rest.

Go home.

It was going to be a while yet before "home" felt complete...

...and the story continues...

Wishing you a peaceFULLYsimple day.


1 comment:

  1. you are an amazing family!! greetings from Stuttgart/Germany! Sibylle