The Men in My Life (a very long post)

Today I am more grateful for my husband and my own father than I ever have been.  And I would be totally remiss if I didn't add my father in-law, too.  Both my father and Erik's father taught us how to be husband/wife and have set such a great Christian example for us to follow.  Erik's father has given up his own life this past 18 months to raise my children.  He walked away from his life in retirement, never looking back, with the responsibility of making sure that Ella and Jack kept as much "normal" in their lives as possible.  My own father has held my hand, kept my spirits lifted and provided much needed compassion when I was at my lowest.  He has helped me keep my eyes looking upward when I was at my lowest.  Most importantly, he has stepped up his involvement at work to make sure that Erik was able to spend as much time with me and Lucy as possible.

And today, I am so grateful for the wonderful husband that I have been blessed with.  I could not imagine living my life without him.  I especially could not imagine going through this sometimes insurmountable trial without him as my help mate.  We are partners.  We are true mates.

It was September 1995 when we first met.  We were at a meet and greet for the Leadership Scholarship that we both were awarded at the University of Memphis.  In a cheesy little "get-to-know-you" game I found my husband.  I was mesmerized immediately.  I left that night, hardly knowing his name, and called my Mom to tell her that I met my husband.  It was November 2009 until I ever really spoke to him again.  Up until that point I would see him walking on campus and my heart would literally skip a beat.  Our first date was the 1995 U of M Homecoming football game.  Pretty much after that we were inseparable.  We dated almost 5 years until June 24, 2000 when we were married.  I can honestly say that I am the luckiest woman in the world.  I absolutely LOVE my husband.  I still get butterflies in my tummy when he holds my hand and when he kisses me.  Sometimes I feel like a school girl again in his arms.

And in case you ever wondered, he is the most amazing father I could have ever hoped for for my children.   My children adore him and he is so attentive to their needs.  I have already begun to pray that my girls will marry someone as wonderful as their daddy and I pray that Jack will learn so much from him, too. 

His love for our family has been made evident (if there ever was any doubt) since Lucy got sick last year.  He has made it his life's mission to keep our family together.  His words exactly: "cancer might have taken my daughter's health, but it is not going to take our family."  How can you not love a man with that much devotion and determination.  

I wanted to share with you something he wrote a while ago.  I debated whether or not to ever publish it.  After all we have been through the past 15 days I asked for his permission and he agreed.  I want my children to read this one day and understand how much their father loved them.  While the topic is Lucy, I think his love for his whole family is transparent through his words.  

March 9, 2012
It kind of caught me off guard this week when I saw the pictures of Lucy that had recently been done. I knew Kate had taken her for pictures, but I didn’t really know any thing about it.  But the one where Lucy is holding the Hope sign will always mean something more to me. Because a year ago today I truly learned what hope is.

A year ago today I was at the hospital alone with Lucy.  It was just 2 weeks after her first diagnosis and surgery to remove the largest tumors in her back and spine.  I had finally talked Kate into going home for a night and spending some time with Ella and Jack as well as to get some things from home for her and Lucy to feel more comfortable in the Hospital.

We had an ok night.  The day before had been good, but overnight Lucy had some significant pain episodes. Lucy’s Neurosurgeon came in by 6am, like he did on every morning we were in the hospital.  I had something on my mind that I had been wrestling with for a few days.  We had never been given Lucy’s pathology reports.  We were told before surgery that they would biopsy her tumors and we would know the type of cancer within a few days.  Well it was now 2 weeks later.  Of course I was starting to over analyze the situation. Many of you know I had previously worked at St. Jude for about seven years. My lab had worked on pediatric tumors. I had even done some studies with medullo. I knew the score.

We knew she had medulloblastoma, but we didn’t know the subtype.  There is a wide variety of outcome based on the subtype. Well I had noticed that one of our favorite nurses hadn’t come to see us in several days. So I start to think the worst. But I was afraid to say anything to anyone, especially Kate. But since I was there alone, when the surgeon came in, I just asked him. I caught him off guard, he looked down first. Then his words confirmed what I already knew. The initial path report said she had the worst kind.  Basically all who have this type of cancer eventually succumb to the disease.

He quickly leaves. And it is just me and Lu. I feel like I was just hit by a truck.  It is the most desperate and lonely feeling.  My words can’t convey what that felt like.  I had no hope.

Lucy slept fairly late.  So I had a few hours alone with my thoughts with her right next to me. I prayed like never before.  Begging God for a miracle.  Like Jacob, I was wrestling with God.  I cannot admit here many of the thoughts that I had that morning. But I was in a state of panic and desperation. And mostly just pain.  Pain for Lucy. That she would never get a chance at life.  That she would miss out on so much.  How this could impact or even destroy my whole family.  I begged, pleaded and negotiated with God like this until Lucy woke up.

When Lucy woke up she was different.  She was in more pain the ever before.  She had been so sore from surgery that we were having to make her turn her head a ¼ turn every few hours so her muscles wouldn’t stiffen up. Well this morning, Lucy would just flip around in bed.  Literally turning somersaults. Something was going on. She was in agony. We had the lights off and the windows covered, Lucy couldn’t stand light,

The quietness of the morning was quickly turning into hell.  She was in excruciating pain.  Nothing would calm her.  She was on pain medicine. Nothing helped. Morphine was useless.

She was screaming and flailing. She couldn’t talk or communicate. I began to change my prayers from the morning.  I started to ask God to just take her.  Don’t draw this out God, if you want her, take her now.  I prayed those words maybe a thousand times.  From about 11 to 12 that day Lucy was dealing with more pain than anyone can imagine. It was like she was being electrocuted. She had no control of her muscles. Her whole body would spasm. One episode caught me in the middle of begging God to take her. It was by far her sickest most painful moment of the last year. I believed at that moment that God was taking me up on my prayer.  All I could do was hold her hand. One of the nurses had come in the room. She held one hand and I held Lucy’s’ other. Occasionally we would look up from across the hospital bed and catch each others eyes. I knew she was emotional too. I will forever have her face etched in my mind.  She was doing her job. I was glad she was there to help me and Lu through this.  She may never know how much she meant to me.  She was my Angel for that hour. Thank God for good nurses who genuinely care.

Finally a Nurse practitioner came in and recommended Valium. In about 30 minutes that worked.

Kate called a couple times during the day.  I desperately wanted her to get to the hospital.  But I couldn’t share this news over the phone.  So I decided to wait.

Lucy drifted in and out of consciousness for the next few ours.  A hospital volunteer brought a dog by the room and Lucy did get out of bed to pet it.  After that she laid in my lap. Just me and her. I was still praying, but by this point I was just numb. I was almost paralyzed with hopelessness. My phone rang a few times. Lots of friends left text messages.  I couldn’t respond to any of them. Josh Pastner called and left a message. The Tigers were getting ready for the CUSA tournament that day. Just like they are today. The outside world hadn’t stopped like my world had. Nobody knew what I knew.

When Kate got to the room around 2, I couldn’t bring myself to tell her right away.  I wanted to let her have a few moments with Lu first. I’m pretty sure she saw right through me.  She came around the bed and sat by me on the chair and asked what was wrong.  I told her. And then we balled our eyes out together. I’m not sure I cried all day until that moment. We walked out of the room and left Kate’s mom to sit with Lu.  We just stood in the hall and held each other and cried. People walked by and we never looked up. 

The neurosurgeon and his assistant called us into the office to discuss and try to comfort us.  But Kate and I both knew the truth. Our baby had no hope of growing up.  Neither one of us liked the idea of putting her through chemo and radiation if there was no hope.

By the time we got back to the room it was well after 3.  I don’t remember talking after that. We just stood around Lucy’s bed in disbelief.  For the next hour or so we were in total despair. Hopeless.

Kate’s dad came up to the room sometime during this hour, but I’m not sure when.  But the four of us stood around the hospital bed and just looked down at Lucy. One of the nurses came in and I’m not sure what she asked, but Kate reached down to Lucy and touched her pillow. It was wet. Lucy is leaking spinal fluid out of the back of her head. I think it is about 4:30.  Nurses rush in and we all quickly realize that Lucy will be having emergency surgery. I decide right then that God has answered my prayer.  He is going to take her on the operating table. I absolutely knew it to the core of my soul.

Once the decision for surgery is made, the four of us stand around the bed and say some prayers preparing for the surgery. It is now about 5:30. I just remember it being so dark in the room.  The window shade never got opened all day long.  We couldn’t turn the lights on.  The sun was setting or had set outside.  It was just dark.  And for me quite hopeless.

I should tell you now that almost every day around 5:45, the food service called to remind us that we hadn’t ordered dinner yet. Lucy wasn’t eating anyway. And truthfully neither were Kate or I.

Well the phone rings. It is on my side of the bed. I pick it up and slam it down. I was frustrated. Didn’t they know what we were going through? Of course they didn’t.  I was telling my precious daughter good bye.

The phone rings again.  Nancy grabs it first and answers.  It’s the neurosurgeon’s assistant.  I really didn’t want to talk to her either.  Kate and I were thinking about hospice. They encouraged treatment.  I didn’t want to fight with her about it anymore on this day. I reluctantly take the phone. She says she wants me to talk to the Dr. from St. Jude and quickly puts her on the line.  I don’t want to talk to her either. 

She says that the final and more thorough pathology report came in.  The initial path report was incorrect. Lucy did not have the worst kind of Medulloblastoma. There was hope. Lucy had hope.

I know that the Doctor was still talking. But I don’t know what else she said. I was crying like I have never before or since. What had been the worst, most grueling day of my life just took a 180 degree swing.

Lucy still has a nasty cancer. But we now have a fighting chance of beating it. I was overjoyed. But emotionally spent.  I couldn’t control it anymore.  I wept for over an hour.

Of course like everything else in our journey, there was no time to sit around and contemplate. They came to get Lucy for surgery. It was her second one since her major surgery to remove the largest tumors. The surgeon needed put in a spinal drain to relieve the pressure in her brain and spinal column.  It was the pressure that was causing her pain earlier in the day. Her nerve endings had been misfiring all day long.  She had post operative meningitis.

We went with Lucy downstairs.  Her surgeon grabbed me and hugged me.  I swear I saw him tear up. It was an incredible moment.  He handed me a copy of the pathology report and said to frame it. Surgery went well. And the day closed with a hopefulness that has stayed with us ever since.

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