Back from Hiatus...

Hello again! My nine loyal friends who read this blog. ;) And to clarify, that was in the past tense.

Back, indeed- after a long hiatus, is more like it.

I'll skip everything in between and put it simply.

I'm going to start writing again.

Lull

So.... long lull lately, eh?

Sorry for the sudden drop off in the middle of the 'Procedures' stories... things with the wedding got busy 'round about that time. And by busy I mean, the house is a mess, most of regular life is on hold, and I am trying to survive through buying a house, planning a wedding, and working full time. Its been a little crazy.

On the other hand, there are some stories happening concurrently that I absolutely cannot wait to share with you. Some amazing things happening recently at the Children's Hospital- definitely story worthy.

Just wanted to give a heads up that I am putting a formal hold on blogging until we are back from the honeymoon... which will be May 23rd.

Doubt we will be blogging much on May 24th either. But you know, sometime about then I'll pick back up.

Cheers and love to all!

The Procedure, Part II

Every hollow tube, from a shotgun to a needle, has a gauge.

For those familiar with shotguns, its a bore diameter. The smaller the number, actually, the larger the hole. So a 22 gauge shotgun has a much smaller bore diameter, or hole, than a 12 gauge shotgun.

Same with a needle.

*Intermission for funny story from the ER*

To start an IV, nurses usually use a 24 gauge needle or smaller. Unlike drawing blood, which is bearable, having an IV started is painful. I know because we had to practice on each other in PA school.

So there was this nurse I knew at OU Presby's ER, who, if she ran into a teenager that had done something especially stupid; and was simultaneously disrespecting their parents; or the nursing staff; and then needed intravenous medication to be rescued-

Would always use an 18 gauge needle to start their IV.

"Don't be nobody in their right mind do something like that to their own mother," she would mutter as she searched for the big needle.

The pain from a 24 gauge needle to start an IV is significant. An 18 is torture.

*Back to the real story*

My needles for spinal taps are anywhere from one to three and a half inches long. Their gauge isn't too bad- usually about a 20.

But a bone marrow biopsy needle is an 8. And, its five inches long.

The Procedure, Part I

First thing most mornings, I grab a surgical consent form and a black magic marker.

The consent is usually for either a lumbar puncture (spinal tap), or a bone marrow biopsy. After all, we look in places where cancer hides. This can either be the spongy inner part of the hip bone where immature blood cells are made, or in a person's cerebral spinal fluid.

Hence, the Procedures.

The black magic marker is for marking. Marking exactly where on a child the numbing cream will go.

The consent... well that part's obvious.

It is in a procedure that I see how vastly different all children are. Some kids are so nervous they can barely sleep, up at 6 a.m. worrying about it. Some kids are just mad that they can't eat breakfast. Some kids want to know every time they are getting one. Some don't want to know at all. Some watch movies or read Where's Waldo? just prior to theirs. Some sob, some scream if the parents even think about laying them on the table. And some, some are silly right up to moment they fall asleep, laughing and joking about the funny dream they are about to have.

And then there's the rare child, that nothing, and I mean nothing, can get down. One such 4 year old child, laughing with a huge smile on her face (simultaneously the sickest girl in the hospital) once told our Child Life rep, Kristin:

When is my procedure?? I CAN'T WAIT FOR MY PROCEDURE!!

This is the same child I often see down on all fours, jumping up and down, excitedly barking like a dog.

And so you can clearly see why I prefer children over adults.

When we get to the procedure room, there are several things in hand. Toys in the Child Life person's hands. Syringes full of medicines and chemotherapy in the nurse's hands.

The child in the parent's hands.

And the sterile tray, sterile gloves, and big needle in my hands.

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.

Arden: Part I

Arden Smith was diagnosed with neuroblastoma in August, and in fact, was the sickest new oncology diagnosis I had ever seen. (Neuroblastoma is a tumor of the nervous system that usually originates in the adrenal gland, a small piece of tissue that sits on top of the kidney and makes all kinds of important hormones.) 

Arden had quite the journey: First, her pediatrician in the tiny Oklahoma town where she lived told her parents that the mass growing in her belly all summer long was "no big deal" and probably just a big spleen. Fortunately, they sought a second opinion in the nick of time, which saved her life. A CT scan showed a gigantic mass filling her belly, even invading some of her other organs. When she finally got to us at the Children's Hospital, Arden looked pregnant- except the bulge was too irregular and nodular to be a pregnancy, and resided mostly on the left side of her abdomen. She also just looked ill. 

One thing all doctors learn to do: look at a person and judge how close to death they might be. You'd be surprised how quickly that skill is learned. 

Arden then went to the OR to have the mass biopsied and almost bled to death on the operating table as her surgeon, Dr. Puffinbarger, tried to get a piece. Puffinbarger saw what we saw in Arden: "This baby needs chemo!" She almost shouted when she saw me in the OR hallway afterward. "She's on the edge. When are you guys going to start some and save her life?!"

She was right. Arden was on the way out, and fast.

Intermission & Announcement

First, I just want to say what a pleasure it was to write out Lily's story. After everything that's happened this last year, and all the different children we've treated, it was really fun to go back and remember all the way through one entire story. On a day to day basis, its easy to forget the big picture truly is bigger than any single day's joys or sorrows. I am looking forward to continuing this with others of these little people as time goes along- if for no other reason than making sure I don't forget them either. Thanks for reading and remembering these precious children with me.

Second, I wanted to announce that... 

Larry asked me to marry him on Christmas Day. We're engaged!

Lily: The End

Don't you know, Lily not only survived her fungus-removing thoracotomy that fateful Friday, but also the ensuing weekend ICU stay; then, the little fighter survived her next big procedure, another chest-opening OR visit to remove more aspergillus on Monday (which ended up this time as a mere thoroscopy).

Praise the Lord, Lily lived through all that awful torment. And the torment accomplished its only necessary task, and saved her life.

When she came back to us this time (in early September), Lily was exhausted, deconditioned, and in almost constant, intense pain from the foot-long surgical wound that included twelve severed ribs, all healing inside. All this, and she still had to keep fighting the remaining fungus. All this, and her constant pain persisted, despite morphine drips, for the next three months. All this, and she still had to undergo the biggest unknown of all: a risky bone marrow transplant. All this, and we still weren't even sure that Lily was in remission from her leukemia.

All this, and the girl still had joy. Simply astounding. Although she was often in and out, drowsy from the pain medications, and often depressed secondary to her pain: she never gave up, and often managed a weak smile when I'd sneak in personal visits. During this time of pain and healing, her will to live persisted and... blossomed, even. Lily became my hero.

Lily was then given one more bone marrow test that showed she still had 6% leukemic cells in her marrow. Because so much had already been done to save her life, the transplant team went ahead with their plans and Lily received a bone marrow transplant in October, 2010. Her transplant was relatively uneventful, and she engrafted within the month. With new donor white cells present to fight the fungus, Lily's energy was no longer drained on a daily basis and her body began to truly heal from her chemotherapy, transplant, and surgery. Just before Thanksgiving, her intense pain had finally resolved and she was alert and eating on a daily basis, able to get up without excruciating pain.

At the end of November, we released Lily from the hospital. Her room was decorated; Sam Bradford called her on the phone to wish her a happy break out: and Bob Stoops came up to the hospital and wheeled Lily through streamers and out of her suffocating little hospital room for the very last time. He then took her down the elevator and out of the building to the limosine that was waiting outside to take her away.

Lily, with tears running down her face, saw the glorious light of day and breathed the free air from the outside without having to fear death for the first time in 113 days. Just like that, the nightmare was over.

Writing this, a song fills my head, with one name- Jesus- interchanged for our girl:

Hallelujah! Lily is alive!
Death has lost its victory,
and the grave has been denied!
Lily lives today,
She's alive, she's alive!

"Then the end will come, when Christ hands over the kingdom to God the Father after he has destroyed all dominion, authority and power. For he must reign until he has put all his enemies under his feet. The last enemy to be destroyed is death." -1 Co 15:24-26

Little victories like these are truly a little piece of heaven on earth.

Though none can say how long Lily will remain in remission, or indeed how long any of us will manage to stave off the enemy death, in the short term at least- victory is sweet! Shout with me!

"Where, O death, is your victory?
And where, O death, is your sting?"

Triumph to those who have overcome with life- to you, Lily, bravo!

And to the Lord, highest of praise for the short and sweet victory of this life!

Lily, Part V

I don't remember exactly when Lily's plight became so close to my heart. To tell the truth, most of our kids don't die. Definitely not within the first year of therapy, and that's all the longer I'd been working at the Children's Hospital; the thought of losing this precious girl, soon, had been weighing on my heart since the fungus was diagnosed. 

But the realization that she might die that day had suddenly come too close for comfort. 

Please, Lord. Save Lily's life. Save her life. Please save her life.  Over and over and over.

Dr. Rooms and I had made an arrangement- she was going down to the OR to watch the surgery and would text me to come down when they opened Lily's chest. After all, even for those of us who work on the oncology unit- this was something really unusual. We all wanted a first row seat. 

Lily's thoracotomy did not disappoint. The surgeons had decided that a sternotomy was too risky, and didn't think she could survive it. They wanted to do the surgery laproscopically, but there were just too many fungus balls. And so they decided to open up each side of her chest separately. 

Two thoracotomies. Ouch. 

Dr. Room's text came just as I was finishing a few things on the floor; it was a picture text. Of the first fungus ball. I raced down to the OR and threw on some paper scrubs over my clothes. Entering the OR, I was greeted by the sight of a room filled with people, all surrounding the table where Lily's body lay carefully positioned, her left lung visible through the gaping hole made by the rib spreader. 

(Rib spreader.)

The surgeon reached his hands in and began cutting away at something. Looking over at the instrument table, I saw several little pink and black chunks sitting, waiting to go to pathology. 

"They're almost done!" Dr. Rooms exclaimed as I walked in. 

"But you just texted... I thought they were doing both sides?"

"She's losing too much blood. They're giving her more but she's not very stable; definitely not enough to open the right side. They're going to send her to the ICU for the weekend and try to finish the other side with the laparoscope on Monday."

That's right; it was Friday. Friday when the surgeons nearly killed her, trying to save her life. Friday that she went to the ICU for the second time. Friday that she survived her first thoracotomy. 

Lily, we realized at this point, was not going to give up without a fight. 

And the true fighter that lived within her was only beginning to arise. 

Lily, Part IV

Thoracotomy: an incision into the chest wall through the ribs, to enter the chest cavity.

I have seen three thoracotomies in my life; two were actually sternotomies (cutting open the sternum, rather than the ribs) for heart transplants from my cardiology rotation- one of those was recorded in detail on this blog. The third was an emergency thoracotomy I saw at 4:00am one morning in the ER, on a man dying after a traumatic motor vehicle accident. As Dr. Lovelace said: When you can’t figure out what’s wrong after imaging someone over and over, and they keep dying, all you can do is cut them open and take a look. Once we’d used the rib spreader to get that look, it was obvious that the man’s diaphragm had been severed and he was bleeding heavily from a laceration to his lungs. He passed just minutes after his thoractomy.

Point being: a thoracotomy is a big deal. Doctors don’t cut into someone’s chest unless they absolutely have to; its only done in the most extreme circumstances, and then only to save a life. Needless to say, cutting open Lily’s chest to remove the fungus was exactly that kind of heroic, life-saving measure; and those procedures are always the riskiest. Even though it wasn’t an emergency, it would still be incredibly painful and would also take her months to recover.

If she survived.

When Dr. Rooms approached Lily’s parents with the options, I don’t know whether or not they fully realized the gravity of the situation; but regardless, when everything had been explained… they decided to take their chances, and go with thoracotomy.

I don’t have children, and I always think about how unimaginable it would be to make the kinds of life altering decisions our parents are often being forced to make. But one thing I’ve learned from them is that anything is better than letting your child die, and then wondering later if they might have been saved. That is the unbearable thought that trumps every other medical risk or procedure, no matter how horrifying; and rightly so.

At ten a.m. the next morning, I stood in the hallway of the bone marrow unit and watched as the transporter arrived to take Lily to the OR. She looked much too ill to be undergoing this kind of surgery; her mom was waiting to get in the elevator to go down to the OR waiting room. She caught my eye and so I walked over and tried to reassure her with a hug and a smile, and let her know I was praying for her and for Lily.

But inside I wondered if she would ever see her daughter alive again.

Lily, Part III

And so, Lily came back to us septic. In fact, she went almost straight to the ICU. I think she lasted a few days on our unit before she ended up there with low blood pressures, being kept alive by medicine drips while the antibiotics worked on killing all the bacteria in her blood.

I still remember the song that was on repeat in my head the morning I came into work, sat down at my desk, and saw that Lily's name and room number had changed to an ICU bed.

Rise! And shine! And give God, the glory glory!
Rise, and shine, and give God, the glory glory!
Rise! And shine! And! Give God, the glory glory, children of the Lord.

A sort of sick feeling entered the pit of my stomach. Not this girl. This was our sweetest girl, one I loved more than a lot of the others I didn't see as often. I didn't really believe Lily was going to die in the ICU, but you never know for sure, until they survive.

To make a long story short: Lily survived. She fought off the infection and came back to our floor, weakened but alive. At this point, it was still such a joy to see her every day; sick to her stomach from her second round of chemotherapy, she still managed to conjure up a smile for us on rounds each morning. Pictures and Bible verses went up all over her walls and outside her room in the bone marrow transplant unit. She survived her second course... and we all began to think she would be ready for her transplant soon.

Until one day, Lily started coughing. It was a harmless cough at first, but then the fevers started; the antibiotics restarted; and within a few days, after imaging her chest, we found out more bad news: Lily was so immune suppressed that big balls of fungus were growing in her lungs. Lots of them.

Ordinarily, no one goes through chemotherapy without getting low white blood cell counts. This is to be expected. However, we also give patients antifungal medicines when we know they will have no white cells to fight infection for an extended period of time. So, when Lily began growing fungus balls while on antifungals~ we started saying serious silent prayers. I did, anyway.

Here's the point: you can get a bone marrow transplant and have a 50% survival if you are in great condition. But start knocking out major organs, like your lungs, and your survival from that kind of transplant starts to approach zero. Fungus just before transplant, like secondary AML, is a real killer.

We gave Lily antifungals... and more antifungals. And then increased the dose of her antifungals. The girl might as well have been taking baths in voriconazole, chugging kegs of ambisome; caspofungin was approaching high enough concentrations to start spouting out of her eyeballs. But despite all this- Lily didn't clear the fungus. She didn't come anywhere close, in fact; upon repeat CT scan, the fungus balls were still there. Smaller, but just barely. There was just too much lung fungus for her weakened immune system to clear prior to transplant, even with the help of drugs.

It was at this point that Dr. Rooms, Lily's bone marrow transplant doctor, had a big decision to make.

Do I offer hospice to Lily's family, and let her go home to die?

Or do we send her to the surgeons to cut her chest open, spread her ribs, and dissect out the fungus balls, one by one?

Lily, Part II

We were all totally devastated.

Secondary AML, the disease Lily had just been diagnosed with, has about a 5-10% 5 year event free survival. That means, more than 90% of kids... don't really survive. Secondary AML is a killer.

Secondary AML? Secondary AML?? You have got to be kidding me! How can someone with such promise get a death sentence at 14 years of age? And handle it so well? Lily herself barely reacted; the shock itself was enough to numb her for days.

Lily entered the hospital for her first course of AML therapy in April 2010. This she handled like a champ; because of the high risk of a certain bacterial blood infection following the specific chemotherapy she was given, Lily was resigned to wait in the hospital until her blood counts fell to zero and rose back to acceptable levels. This period of time, in general, is about four to five weeks from admission to discharge. Because we give the next round of chemotherapy almost immediately after the blood counts have risen back up again, AML patients are usually in the hospital for around 6 months while they complete 5 rounds of chemo.

In secondary AML, however- because of the awful prognosis- we simply get the patients into remission and then go directly to bone marrow transplant. BMT: a procedure that, by itself, has a 50% mortality rate. Not a promising outlook. However, getting into remission usually takes- *we hope*- just one or two courses of chemotherapy.

Well, like I said- Lily got through the first round like a champ. Very few problems... our girl breezed right through it. We then checked her marrow.. not yet in remission. Darn. Because we knew she'd be in the hospital for such a long period of time, Lily was allowed to go home for a few days in between chemotherapy when she returned for her second course. It must have been a nice few days at home- but unfortunately she came back to us very ill, with a serious blood infection.

That was the last time she'd leave the hospital for months.