Wednesday, November 14, 2012

Wesson's Cancerversary

Today is November 14th, 2012 -- which means it is Wesson's official cancerversary for being diagnosed with infantile leukemia. I remember the entire day and night like it was just yesterday...and sometimes I wish we could do it all over again just to see Wesson one more time.

I couldn't sleep last night and no wonder. Spending about the first hour replaying the events of that dreaded day only one year ago. It played out like a bad movie, or even a nightmare. Some of our readers were there for parts of it, some had heard what had happened....and others may not know at all.

My own coworkers were the ones to attempt to get a blood sample that evening, after hours and the clinic was closing down. I remember my heart falling into my knees when I saw the color of Wesson's blood. It dripped down his finger like pink water. That's when the physician I worked under at the time (Dr. Keith) had motioned quickly for us to get to the hospital. It seemed that everyone around us was pale as ghosts...and quite horrified.

When we got to Winner Regional the nurses were wonderful, and everybody was so kind but frightened to near death. This is the one part of the night that seems very blurry to me. Listening to the words "we think it's leukemia" -- made me want to escape my own body and bury myself in the Earth. I did not even know infants could get leukemia, let alone my very own son.

Makes you ask those familiar questions ---"WHY, WHY, WHY"

I learned about leukemia (the cancer of the blood) in nursing school, and for some reason the word itself always gave me the heebejeebees.  What I knew of leukemia at that time was that it was something that happened to people in the movies....and they always seemed to pass from it.

But it would never happen to my family or my patients -- that I felt sure of.

We flew to Sanford Children's -- just me and sweet Wesson as Logan and Keegan rode along with my parents in the suburban, much further behind us. Only one thing kept running through my head on the plane that night -- "Keegan is not going to have a baby brother, Keegan is not going to have a baby brother"...and if you wonder why this was all I could think of then you probably do not realize how life threatening Wesson's condition was at that point. 

It was terrifying.

Tests were done at Sanford Children's and the diagnosis of leukemia was confirmed, although we weren't sure what type at that point. It was the highest white count they had ever seen at the castle, and the first infant they had ever diagnosed with leukemia.

What a punch to the gut.

They were all so professional. The physicians, the nurses and all of the other staff. They were concerned --- you could see it on all their faces. My sisters came quickly as they live close by, and did their best to comfort me but themselves were quite distraught to see our sweet little Wesson -- tiny and only ten weeks old in such dire distress.

Never do we see ourselves in this type of situation, and yet here we were.

What a nightmare.

The anesthesiologist came in, and although I don't remember his name -- I will never forget his face. (Although his name is written down in my binder somewhere.)

He was honest and yet very sincere. Wesson would need a large bore intrajugular catheter into his neck for leukeapheresis -- which is where they clean his white cells out and in return give him more blood.

"Wesson may not live through this procedure" he said. "His hgb is so low that his oxygen carrying capacity may make it difficult for him to breathe again, and he will be on a ventilator IF he comes out". To my knowledge his hgb was 2 with a rapidly rising white count that was officially read round 520,000. Normal is 6,000 to 11,0000. 

What I wonder to this day -- is what his platelet count was. I do not believe they told us, but it had to be nearly 0 -- as he had blood in his diapers for a week before diagnosis. There are days when I feel the need to call Sanford and request all of the lab results from that initial screen, but then I stop myself and wonder why.

You are probably wondering what was I thinking?? Not taking him to be checked out with blood in his stool, and believe me I ask myself this daily. But as terrified as I was, there was always a logical explanation for Wesson's abnormal symptoms. And besides, I thought as a nurse I could handle this. His appointment was set for two days after he was diagnosed, and thank God we didn't wait...or our time with our sweet boy would have been cut even shorter.

He would not have survived until that Wednesday.

Back to the procedure. --->

As the nice anesthesiologist was explaining that we had to get Wesson to the procedure quickly, and they would take him soon -- I panicked. Logan had not yet arrived to the hospital. He may not have time to see Wesson before he goes in to surgery. At this point the emotional flood gates poured open -- it was almost unbearable. The combination of fear, sadness, anxiety and emotions I'm really not sure there are names for -- were about to cause a mental explosion within my own body and mind.

That's when the girls told me that Logan was close.

Dawn and Kara had been back and forth on the phone with my parents telling them that they had to get to the castle and not just soon....but now. I told the physicians we had to wait for my husband. And soon enough there he came, running down the hallway of the ICU and into the room in enough time for the staff to quickly huddle together and start to wheel Wesson down the hallway to surgery.

Logan and I kissed him on his sweet little head and secretly said a little prayer. His eyes were wide open and he just stared back at us with this determined sparkle in those baby blues -- as if to say "you guys I am going to be fine."

The rest is history.

The physician's and nurses at Sanford Children's saved my baby boy's life. God had guided their hands to get him through that night and the intense week that followed.

I thank God everyday for that night, because even though Wesson's story ended short....if it had ended that night one year ago today -- what would we have been left with?

Blurry memories of our sweet newborn child, sleepless nights and cold clammy skin. We would have never forgiven ourselves for waiting so long to take him in, and I'm not sure we would have been able to live with that.

So instead, God gave us the opportunity to fight. To move to Memphis and meet wonderful families faced with the same catastophic crises. To meet ourbubbly and amazing baby boy who had a will to fight so strong he beat the cancer that was deemed unbeatable. To walk around the hospital of St. Jude and see to your right -- a family smiling and enjoying every single drop of time together...and on your left a family down on their knees weeping for reasons unknown -- but left us wondering. Relapse? Hospice? Infection?

 God let people into our lives that we would have never otherwise met -- physician's who do anything to save one life of a sick child even if it meant not sleeping or spending time with their own families, nurses who work tirelessly and somehow find the perfect combination of emotional attachment and skilled nursing.

God guided us into 'survival mode' (is what I call it) and we were able to spend almost an entire year focusing on the only thing in life that matters -- which is life itself. He gave us a backbone of support through our friends, family, and community. Loving parents who watched over our oldest son Keegan, so that we could both pour each second of every day into Wesson...and saving him.  God allowed us to sacrifice everything we ever had in order to focus on the life of our precious and yet very sick sweet boy -- and believe me there is no better feeling than that EVER.

If I could bottle up that feeling, and sell it to the world -- I would.

A fulfillment and a reason to live, that leaves you empty when it is all over.

What a journey. What a long bumpy road. What a beautiful inspiring story and at the same time a terrifying nightmare.

If I did not have close to 4,000 pictures of that sweet chunky bundle of Wesson -- I would wonder to myself if this all really happened.

But I miss him.

I miss him today, I missed him yesterday...and I will miss him tomorrow.

I will always wonder what could have been, and why's and why nots.

A year ago today was the worst day of my life....and also the best. Because a year ago today Wesson got cancer. But he also began his whole life's purpose --- to teach.

He taught us to trust in God, to take care of a child with complete love and detailed intricacy. To love without fear, to remember what matters most, and that life can be much simpler if we just forget the small stuff.

We now hug Keegan a little tighter.

And we now have a mission. To help others like Wesson.

Because in ten years when another Wesson comes along, I want those researchers and physicians to know exactly how to cure him.

So that he or she and his family do not have to suffer as we did, and as others are today.

And I will close with the announcement that we are officially incorporated.

The Wesson Littau Foundation, INC. is a go! We will not be taking donations quite yet as it will take a few more months to become tax-exempt and we are in the process of setting up a bank account, and a website to go along with it.

Once this is all set up -- you will be the first to know.

Thank you all so much for your continued love and support, and if you think of it today we ask that you donate to our St. Jude Heroes Team Page in honor and memory of Wesson and his canciversary...and for the thousands of other children like him that are suffering from cancer and the toxicty of the treatment.

Here is the link, it is very easy safe and secure to donate. And the money goes directly to St. Jude Children's Hospital.

Together we can help make a difference!


Wesson and his daddy, about a week after diagnosis in the ICU at the Sanford Children's Hospital in Sioux Falls, SD. Wesson had just been taken off the ventilator, for which he had been on for a week. This is one of my favorite pictures because it displays the love of a daddy for his son...and also the love of a son for his daddy.

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