Scripture 1 - The Works of God

 

The preface to this post is here:  http://ourlittlenicole.blogspot.com/2014/09/the-power-of-word-and-beginning-of.html.
 
However, before I write about this first scripture experience, it is time for a brief Leukemia Q/A.
 
(The main references for statistical information are http://www.curesearch.org, http://www.cancer.org and http://www.acco.org).




July 2011; welcoming Nicole to our family!



Q:  Was Nicole born with Leukemia?
A:  There is no way to know for certain.  She my have been born with it, and it spread slowly, or she may have developed it later, perhaps even as much as three months later, in October.  In any case, by early November, the Leukemia was clearly manifesting itself, but we simply didn't recognize the signs for what they were, such as bruising very easily (due to low platelets), and swelling in her right jaw (due to a high density of Leukemic cells infiltrating the tissues and forming a Leukemic mass, similar to the bump on her head that signaled the relapse).  On the first visit to our family doctor, he remarked that the swelling of her jaw did seem a little unusual, but he assumed that it was just swelling of some lymph nodes, related the infection that he found in her right ear.  Cathy also showed the doctor a large bruise that Nicole had gotten on her head after bumping it lightly against a glass of water that Cathy had been holding.  Again, he indicated that bruising like that after a light tap did seem a little strange, but...


Q:  What causes Leukemia?
A:  No one really knows.


Q:  Are there different types of Leukemia?
A:  Yes.  Approximately 75% of childhood Leukemia cases are Acute lymphocytic (lymphoblastic) leukemia (ALL).  The remaining approximately 25% of childhood Leukemia cases are Acute myelogenous leukemia (AML).  These two types of Leukemia can also be divided into several sub-types.  However, there are also several different, rare types of Leukemia that make up a small fraction of Leukemia cases.


Q:  What kind of Leukemia did Nicole have?
A:  Nicole was diagnosed as having "mixed phenotype" AML and ALL.  In other words, she had both of the two main types of Leukemia simultaneously.  The split was approximately 75% AML, 25% ALL.  This diagnosis is very rare, and is sometimes confused with "undifferentiated" or "biphasic" Leukemia, but they aren't the same thing.  There is no defined, established treatment protocol for this type of diagnosis, since different chemotherapy drugs which can't be mixed are used to treat AML versus ALL.  To further complicate the matter, there were also Myeloid/Lymphoid Leukemia (MLL) gene re-arrangements associated with both the ALL and the AML cells.


Q:  How common is childhood Leukemia?
A:  This is a hard question.  Childhood Leukemia (age 0 - 15 years) is classified as a rare disease, with an incidence of roughly 1 child in 30,000 diagnosed with Leukemia.  Infant Leukemia (age 0 to 12 months) is more rare, with an incidence of about half that (1 in 60,000).  Children ages 1 - 5 years have the highest incidence (1 in 15,000).  In the U.S., approximately 2,500 children age 15 or younger are diagnosed with some type of Leukemia each year.  I couldn't find any hard data for Nicole's diagnosis, but PCMC medical staff comments put it at perhaps 1 or 2 cases per year in the U.S., and no one that we spoke to on the PCMC staff could recall seeing a diagnosis like Nicole's.


Q:  What is the 5-year survival rate of childhood Leukemia?
A:  The ALL survival rate is around 85%.  The AML survival rate is around 65%.  Infant Leukemia survival rates are about half that for both ALL and AML (so about 40% and 30% respectively).  Statistics are hard to come by for very rare cases like Nicole, but doing some extrapolation from the available data and then factoring in how far progressed the cancer was before she was diagnosed, her 5-year survival rate was probably less than 5%.  In truth, at the time of her arrival at PCMC, her 24-hour survival rate was probably less than 5%.  Statistically speaking, Nicole was not expected to survive her battle with Leukemia.  A year or so ago, we were told that if it had been five or six years earlier when Nicole had first arrived at PCMC, they probably would have just sent her home with us that same day, because the technology to even make a desperate attempt to save her life was not in place at that time.


Q:  What is Leukemia anyway?
A:  Bone marrow normally produces three different types of blood cells; red blood cells (which carry oxygen from the lungs to the rest of the body, and bring carbon dioxide back), white blood cells (which fight infection and disease), and platelets (which clot the blood, prevent bleeding).  A normal person has 5k to 10k white blood cells per micro-liter of blood.  Leukemia is a condition where the body's bone marrow rapidly overproduces white blood cells (leukocytes) which are defective; they are immature, non-functioning cells that never "grow-up".  When Nicole first arrived at PCMC, her white blood cell count was around 180,000; roughly 20 to 35 times greater than normal.


Q:  How does Leukemia kill you?
A:  Over time, the production of Leukemic white blood cells by the bone marrow will dominate the entire blood system; the three types of cells that are normally produced get overwhelmed by the useless Leukemic cells.  You usually either die from an infection that your body no longer has the power to resist, or from internal bleeding that your body no longer has the power to clot.  If the Leukemia goes undetected (or you exhaust all treatment options) and you somehow manage to survive long enough, then you may die from organ failure due to Leukemic cells infiltrating vital organs and causing them to shut-down, or you will die from asphyxiation because your body can no longer circulate oxygen/carbon dioxide.

...
 
Nicole arrived at Primary Children's Medical Center (PCMC) via Life Flight at about 2:15 A.M. on December 8, 2011.  It was very important to us that someone already be at the hospital when Nicole got there, and two of her aunts, Cathy's sisters, Carol and Connie, were there waiting for her when she arrived.  Our oldest daughter, Kersten, was married, and she and her husband came and stayed the night at our house to look after our other five children and make sure they got to school, etc.
 
Cathy and I arrived about an hour after Nicole, around 3:15 A.M. and we found her in a temporary holding room on the top floor of the hospital.  She was sleeping, and looked about the same to me as she'd looked when Life Flight took her - not great.  The oncology doctor on-call said that the initial diagnosis of Leukemia had been confirmed.  She told us that Nicole had roughly 180k Leukemic white blood cells in her system (5k to 10k regular white blood cells is normal).  There was so many Leukemic cells in her system that they had invaded her tissues and organs, forming Leukemic masses, and her blood oxygen saturation was dangerously low, so she was on oxygen support.  The doctor was very sober and said they were doing everything possible to preserve Nicole's life.
 
The oncology doctor indicated that the first priority was to try to stabilize her sufficiently for her to be able undergo surgery.  They needed to place peripheral access lines in her neck so that they could hook her up to a dialysis machine.  Her system was so saturated with Leukemic cells that unless they could purge it from the blood, she would still die shortly, despite all other efforts.  They also needed to place a central line in order to be able to administer chemotherapy after the dialysis machine did its work.  If they could get her back from the brink of death to that point, then they would discuss a treatment plan and what the future might hold.  It would be a few days before the doctors learned that she had both ALL and AML, and it would be a few weeks before they learned that she had MLL gene re-arrangements on both the ALL and AML cells.
 
My older brother, Roger, and his wife, Alison, arrived at the hospital soon after we did, and he assisted me in administering a priesthood blessing to Nicole.  I cannot remember anything about what I felt prompted to say, or how I felt during this blessing.  The whole day is mostly just a blur in my memory.
 
The picture at the end of my previous post was taken on December 8 at 3:00 P.M.  Within a couple hours after that picture was taken, we would not be able to hold Nicole again, or even see her eyes open, for several days.

The doctors had been able to get her fairly stable by that point, and felt that there was a good chance that she could survive surgery.  The surgeon was able to successfully place the peripheral access line for dialysis, but due to some complications during the course of the surgery, he decided not to risk trying to place the central line as originally planned.  Instead, the surgeon opted to place a PICC line in Nicole's left arm which would provide access for blood draws and medicine.  After the surgery, they also put an NG tube down her nose to be able to get some nutrition into her body.  The picture below was taken that night, after surgery, at 10:30 P.M.

12/08/2011, after Nicole's first of many surgeries. The dialysis line is in the right side of her neck, hidden in this picture.

Unfortunately, a PICC line cannot be used for chemotherapy due to the extreme toxicity of the drugs.  Nicole underwent surgery again the following evening, and they were able to successfully place the central line.  It took four days for the dialysis machine to clean her blood.  Nicole also couldn't sufficiently breathe on her own, even with oxygen support, so she also had to be intubated for three days during that time as well.

The nurses in the Pediatric Intensive Care Unit (PICU) were truly amazing with Nicole, and helped us as parents to make the transition from our once normal life into the new reality that remains with us to this day.  My heart fills with gratitude whenever I think of the PICU nurses that were with us those first few days; it takes a very special kind of person to work with critically ill infants and children.  I feel likewise toward the nurses that later cared for Nicole in the Immune Compromised Services (ICS) unit.  Over the course of our months-long stay, the angel nurses at PCMC became like additional parents to Nicole and like family to us.


December 10, 2011

I cannot adequately describe my feelings during the first several days that Nicole was in the hospital.  Just looking at her in the condition she was in, with all of the medical devices inserted into her body, I felt utterly helpless, and had a good cry at least once per day.  Nicole was on life support, unconscious, and there was so much equipment attached to her that we could not hold her, and due to the tube they had inserted down her throat, movement could cause damage to her windpipe and even her lungs.  All we could do was stroke her head or squeeze her hand.

Nicole remained in this state for three days, until late in the afternoon on Sunday, December 11. On that day, Roger and Alison again visited us at the hospital.  Roger told me that he truly felt that Nicole was going to survive, and that this Christmas would be a good Christmas; he said that the Spirit had reminded him of the account of the Savior healing a blind man, "that the works of God should be made manifest in him."  Later that evening, Nicole returned to us and opened her eyes for the first time in three days.  I can't express how wonderful it was to see her eyes again.

I knew the scripture my brother had referred to, and looked it up:
"And as Jesus passed by, he saw a man which was blind from his birth.  And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?  Jesus answered, Neither hath this man sinned, nor his parents; but that the works of God should be made manifest in him." (John 9:1-3).

As I read this scripture, the Spirit of the Lord spoke to me, and I wept.  I reflected upon this scripture many times over the next few weeks, and drew strength from the communication of the Spirit which accompanied it.  The Lord still didn't clarify to me His meaning of "you shall have her for a time," but I knew that he had answered my prayers to at least give us time as a family to say goodbye, if it came to that.

The next day (12/12), they were finally able to extubate her - she was breathing on her own again, though she still needed oxygen support.  She was taken off dialysis late that night, and I was able to hold Nicole again for the first time in four days.


December 12, 2011; still on the dialysis machine, but no longer intubated

Nicole was finally transferred from the PICU to the ICU unit on December 17.  This transition was actually a little scary for Cathy and me, because in PICU there was a nurse in the room with her around the clock.  In the ICS unit, one nurse is typically responsible for several patients, and this took a little getting used to.


December 17; Nicole with her brother Jake

Nicole was still having a lot of difficulties, and ended up back in PICU for a few days.  Of the 10 months she spent in the hospital during her first battle, she was in-and-out of PICU for about one third of that time (see hasn't been to PICU for even one day since the relapse).  She made it back to the ICS unit a couple days before Christmas, but she did get a visit from Santa Claus while she was down there.

December 21, 2011; Nicole and Santa in PICU

As I mentioned earlier, during those first few weeks I took strength from the scripture that my brother had re-introduced to me.  That scripture, along with the spiritual communication that accompanied it, helped me to be able to fully submit my will to the will of the Lord at that time.  While she was back in PICU, I gave Nicole a father's blessing.  As I struggled to know God's will, and what he would have me say, I knew that I had to be willing to let Nicole go, I knew that I had to be willing to submit to the Lord in all things, including the taking of my daughter's life, if need be.

I did not know what God's plan was for Nicole - whether or not he would require her life - but during the blessing, I was finally able to say in my heart without hypocrisy, "the Lord gave, and the Lord hath taken away; blessed be the name of the Lord." (see Job 1:21).  With a broken heart, I told the Lord that He could take Nicole home to Him if He required it.  Following that blessing, a deep sense of peace settled on me.

I also felt that the time was not yet - Nicole would remain with us, at least for a while.

December 23, 2011; back in ICS

On Christmas Eve, after spending the afternoon together as a family, Cathy left the hospital with our other children to go to her family's Christmas Eve celebration, and I spent the evening alone with Nicole.  I held her in my arms and rocked her.  I didn't feel like singing songs about Santa Claus, but I did quietly sing to her every Christmas Carol I could think of.  I also read the story of the Savior's birth from the New Testament to her.   It truly was a good Christmas.

Nicole with her mother on Christmas Eve

Since that time, as I have pondered the scripture in John 9, I have been strengthened in other ways.  I know that Heavenly Father loves each of his children; despite the afflictions we pass through here in mortality, His purpose is not to condemn us or to crush us, but to shape us into His image.  I recognize better now "that the works of God" are "made manifest" in many, many ways.  I see this in my own life, and in the lives of those around me.

 

God's power is truly manifested in seemingly ordinary ways in each of our lives if we have ears to hear and eyes to see.  "Now ye may suppose that this is foolishness in me; but behold I say unto you, that by small and simple things are great things brought to pass... And the Lord God doth work by means to bring about his great and eternal purposes; and by very small means the Lord doth confound the wise and bringeth about the salvation of many souls."  (Alma 37:6-7).

 

I want to always remember and be true to the things which the Lord has taught me.