Thoughts

Its a little interesting, how Blogger these days allows you to see the "stats" of your blog following. For example, I can see that there are a lot of people reading this blog, but very few commenting. 

I'm really interested in this disparity. Thoughts?

Also, it was very different writing out Arden's story than Lily's. As the end approached it was a little more distressing to know that eventually, it was going to be a tragedy. It was heartbreaking to finally write out her end; and has taken me a little time to think through, in the future, how I am going to continue sharing those stories that end so tragically. It may be that snapshots throughout different parts children's lives are shared instead of their entire stories. I'm going to do a little more thinking on this.

Next up: The Procedure.

Arden: The End

Completely ignorant that any of this had come to pass, Larry and I drove home on Sunday afternoon, discussing wedding plans. We'd never talked about when we would get married, or where~ we actually had never seriously discussed it at all. (Not beyond jokingly mentioning stopping by the courthouse to see if the judge was in, anyway.)

Imagine my surprise, when I walked into the hospital Monday morning and found out that Arden had died. 

Last I'd seen her, she'd looked great, and was headed home just fine. I didn't even know she had been admitted to the hospital. 

My heart really grieved for Arden.

Despite the sadness in all of our hearts, there had to be joy too- everyone wanted to hear the engagement story and see the ring; wanted to laugh and be excited and celebrate. I wanted to, too~ but I also wanted to mourn our sweet little girl. 

It worked out, that Larry and I decided that we wanted to go to Quartz Mountain that week to see the wedding venue; and Arden's funeral was Thursday. We decided to make it a round trip.

Arden was special. 

Arden's family was special, too. On the front of her funeral program, underneath a picture of her big smiling face, they printed Psalm 45:4: 

In your majesty, ride out

to victory, defending truth, 

humility, and justice. 

Go forth to perform

awe-inspiring deeds!

Arden's real name literally means paradise star. According to her obituary, she lived up to her name flawlessly. She loved to be the center of attention. 

And from her funeral, it is obvious that her parents deeply believe she is now garnering much attention as a beautiful star in true paradise, in the arms of her Maker, whom they love.

I've thought of that verse many times; it was so appropriate, but still kind of hard to put your finger on exactly why. I think its because keeping faith in God's utter goodness, when your child dies, is probably life's most awe-inspiring deed. And for a one year old to fight life and death battles is awe-inspiring, as well. Knowing that cancer and evil killed her, but that Christ loved her and one day will return, riding out to defend innocent children like her, in truth, humility and justice~ 

That is ultimate faith.  

You have it or you don't.

Something inside me wants to cry but knows that verse is true when I think about this child's immortal life. She might have lost her battle with cancer but the grave cannot keep her! She has already triumphed over death. 

To Arden, who fought so bravely: All hail the victorious dead!

Arden: Part VIII

On Christmas Day, Arden's blood pressure began falling. Despite fluid boluses, her pressure could not be maintained at a safe level and the ICU doctors were called. They came to our floor and looked at Arden, and agreed that she probably needed to come to their floor for medicine drips to increase her blood pressure. 

Arden's parents were not fond of this idea; they had seen what she looked like the first time she went to the ICU. Compared to then, when their daughter had been on the brink of death, she probably did appear much better. But despite how far she had come in just a few months, Arden was still infected and ill; so to the ICU she went. 

Medicine drips were started: vasopressors. 'Pressors (as they're called), maintain a high enough blood pressure to ensure that all organs are perfused when a patient is too sick to maintain a normal pressure on their own. These medicine drips, plus antiobiotics, keep modern people alive who otherwise would have died of sepsis in days past. 

Praise the Lord for modern medicine. 

Arden had a shaky time, but survived Christmas. The next morning, she was sent down to radiology for a CT scan to look for abcesses or other sources of her sepsis/low pressure. 

When she came back up to the ICU, her heart stopped beating. 

Arden's parents were in the room while the ICU doctors began coding their daughter. Chest compressions, bag valve mask breathing, epinephrine administration- finally they brought Arden back. Her heart beat returned after about thirty minutes of CPR. 

But this child was on a precipice. Despite going back up on all her medicine drips, the infection was overwhelming. Arden's heart stopped beating over and over that afternoon, and she was coded for hours before her parents finally asked to let her go. 

She died on Sunday afternoon, December 26th. 

Arden: Part VII

While we were merrymaking, rejoicing in our engagement, another story entirely was unfolding at the hospital. 

Arden had been readmitted just before Christmas to the heme/onc floor for fever and a low white blood cell count- known in our world as 'fever/neutropenia.' As she couldn't fight the infection by herself after the latest round of chemo, she was being given big gun IV antibiotics and fluid support. 

To Arden's parents, or any of our parents that have been around the block a few times, fever/neutropenia is a fairly routine hospital admission. Stay in for awhile, get some antibiotics, start feeling better, bada-bing, home in a few days. Almost a fourth of the kids on our floor, at any given time, are probably in for fever/neutropenia. Some kids get it routinely in between chemotherapy administrations. Some kids never get admitted for it. I wish I knew why. 

A routine admission~ except when a child gets septic.

Sepsis happens when a patient's bloodstream is overwhelmed by bacteria. The patient can get extreme fever, shaking chills, lightheadedness or confusion, a rapid heart beat to attempt to increase their blood pressure, hyperventilation to compensate for a change in their blood pH, and other symptoms. 

Sepsis is a bad deal. Fortunately, it can usually be overcome with quick administration of large amounts of fluid, and antibiotics. 

But not always. 

Arden: Part VI

Just before Christmas dinner, Larry prayed this prayer:

"Thank you Lord, for those gathered here today. We especially thank you for your Son and his birth. Mostly we thank you for His life."

He paused, and took a deep breath. 

"And I also thank you for this beautiful woman that I want to make my wife."

My eyes, along with several other eyes at the table, popped open. I looked over at him and saw that he was smiling this mischievous little smile. Then he slowly stood up from the table and I froze.

"Erin, I love you and I want to make you my wife," he said.

I continued staring at him incredulously, trapped in a complete state of shock. 

Then this wonderful man, that I have been completely in love with for the last two years, got down on one knee and pulled a handkerchief out of his pocket; one that had belonged to his father. Out of the handkerchief, he pulled a ring. 

Then he asked me to marry him. 

Arden: Part V

Arden did well over the next few months. She continued to received chemotherapy, and also underwent a stem cell harvest. Because neuroblastoma is also a very aggressive cancer, high dose chemotherapy is required to kill it. But it also kills the patient's bone marrow- and so early on, the patient's own marrow is harvested and saved in preparation for their own future "auto" transplant. Arden underwent all these procedures and rounds of chemo without a hitch. 

In the interim, I was on vacation; first to Iowa, to take my future fiance to meet my grandparents for the very first time. That was over Thanksgiving. During which we had a wonderful time.

I came home and went back to work, then saw Arden for the first time in almost eight weeks, as much of her therapy had been outpatient. I still remember how much she surprised me. Arden looked great. No more sickly, fresh-from-the-ICU baby; she now was actually kind of normal looking. It was a great feeling... feeling that I had helped bring her back.

Shortly after seeing Arden, I left again for a week long Christmas vacation to Poteau, Larry's hometown. We planned to spend the entire week lazing about, watching movies and spending time with family. Which we did and thoroughly enjoyed.

On Christmas morning, I woke up and thanked the Lord for his goodness to me. It was hard to believe that just one short year after the worst three years of my life were finally over (read: PA SCHOOL), I now had a loving boyfriend and wonderful family, a fantastic job full of children I adored, a beautiful apartment, good friends, a great church, and actual free time; everything my heart could have ever desired. 

Christmas is such a beautiful day, when you have the ones you love with you. 

Looking back, I wish I would have said a Christmas morning prayer for Arden, too. 

Arden: Part IV

In all the time that I've been taking care of Arden, I have never gotten to hold her. 

You see, when Arden was diagnosed in the ICU, we hadn't had time to get a lot of the necessary scans we would normally have obtained before starting therapy. However, she did get one scan- a CT scan. Which showed, in essence, that the neuroblastoma had spread all over her body; bony metastases were everywhere. She had so many of these that multiple bones had weakened, and consequently fractured. 

Scattered bony fractures across her entire body... ouch. This meant Arden was on a constant, slow-release pain medicine patch and, that everyone- all of us- were basically afraid to move her. The nurses were too scared to scrub her with bedside baths. We examined her with light touch and extreme care. Even her parents kept her in her bed most of the time for fear of hurting her.  

But honestly, our girl didn't seem to mind. Later I would find out that she was a free spirit who had never liked to be snuggled. 

I like that kind of good, old fashioned independence in a woman. 

Slowly but surely, Arden began getting better. In the weeks that followed her stay in the ICU, Arden's breathing continued to improve, her blood salts improved, and she began sitting up and interacting again. 

I still remember the first time I ever saw her out of bed; she was being pulled around the tenth floor in a bright red wagon. She was still on oxygen but she was sitting straight up, taking in all the sights around her. It was a little hard to believe that she was doing so well, after her narrow escape. 

And just before we discharged her from the hospital, she even gave me a little smile. 

I think she knew I was on her side. 

Arden: Part III

She lived. 

After more than a week in the ICU and five straight days of chemotherapy, Arden's tumor began dying, shrinking back from her chest, giving her enough room to breath. She was extubated and after another week or so in the ICU, came back to us on the oncology floor to recover. 

From the first time I saw her awake, Arden looked scared. Previously I'd only seen her sedated in the OR and intubated in the ICU, her eyes shut. But now she seemed to stare at us with wide, scared eyes that screamed to me Post Traumatic Stress Disorder! And no wonder- in the few short weeks that preceded her arrival back to our floor, she had almost died twice and been through major trauma. 

Post-traumatic stress disorder manifests itself in various ways in our patients; for Arden, I felt the eyes said it all. An open window to her soul, they seemed to plead with quiet determination.

She asked me with those eyes every time I saw her. I never knew what to say. 

Arden: Part II

It was Dr. Cain who saved Arden's life that day. 

After her close call in surgery, Arden was sent to the pediatric ICU in critical condition. Her tumor was now so big that it filled her entire abdomen and was starting to push into her chest, so much that she couldn't even expand her own lungs to breath.  She was intubated and placed on a breathing machine, and Dr. Cain made a quick decision on the chemotherapy protocol she would follow. 

I remember clearly, writing the chemotherapy orders to start at noon that day. We wanted Arden to be hydrated with fluids for several hours and then get chemo as soon as possible in the hope that it would start shrinking the tumor enough for her to breath again. Hopefully before even a machine wouldn't be able to expand her lungs.

However, probably because they are used to so many different kinds of patients-the ICU nurses never started Arden's chemotherapy. They apparently thought her other medicines and drips were more important and continued trying to give her what they thought was the priority. I still remember walking down to the ICU at 3:30pm to check on her and finding out that nothing, nothing had been started. Not even her pre-hydration fluids. 

It was devastating; and she was getting worse. I immediately called Dr. Cain and filled her in. "Oh, my God. That is unacceptable. I'll be right down." She promptly arrived in the unit and both of us pretty much accosted the nurse who was taking care of Arden. It was a huge mistake, and it truly could have cost this girl her life. 

When babies get really sick, they can crash fast. Chemotherapy was the only thing that was going to save her.

After all, Arden was only 18 months old.