Scripture 2 - I know that [God] loveth his children

This is the third in a series of posts that review Nicole's first battle with Leukemia, along with seven scriptures that the Lord used to teach and strengthen me during that time.  Here are links to the previous posts in this series:

Preface:  http://ourlittlenicole.blogspot.com/2014/09/the-power-of-word-and-beginning-of.html.

Scripture 1:  http://ourlittlenicole.blogspot.com/2014/09/scripture-1-works-of-god.html

During her first round of Chemotherapy in December 2011 (and subsequently as well), Nicole suffered from a very severe case of mucositis, which is an ulceration and inflammation of the mucous membranes lining the digestive tract.  Mucositis is characterized by painful open sores; it goes from the mouth all the way out the other end.  Mucositis is a common side effect of chemo and radiation therapy, but varies in intensity.

December 29, 2012

On the low end of the spectrum, mucositis can be merely uncomfortable, and in some cases patients don't even suffer from mucositis at all.  On the high end, as in Nicole's case, mucositis can be debilitating, with patients unable to even swallow because of pain and tissue inflammation.  Thus began Nicole's "oral aversion" (the avoidance, or fear of eating, drinking, or accepting sensation in or around the mouth), which remains with us to this day.  We had to get a little creative to keep the drool from her mouth from soaking the bandage covering her central line, or pooling in the creases of her neck which would cause her skin to break down (some of this damage can be seen in the video below).  Here, on New Year's Eve, 2011, Nicole's oldest sister, Kersten, reads some book to her:

The only thing Nicole would allow in her mouth was her pacifier/binky.  The doctors and nurses were amazed that she would keep her binky with such terrible mouth sores and sheets of skin literally peeling off inside her mouth, but the binky and being swaddled tight in a comfy blanket were two of the main things that helped Nicole endure through that first months-long struggle with Leukemia.

At the end of the first round of chemotherapy, Nicole's Absolute Neutrophil Count (ANC - a measure of the body's immune system strength) recovered quickly, and they sent her home with us for 5 days.  But since we had to make two scheduled trips back to PCMC for procedures, it was mostly just a weekend break at home.


Friday, January 6, 2012; buckled in, ready to go home for a few days.

We left the hospital on Friday, January 6, 2012, then went back for an out-patient bone marrow aspiration and a lumbar puncture procedure the following Monday, then clinic on Wednesday, and then back in-patient on Thursday.  Results came back indicating that Nicole's bone marrow and blood did not have any detectable levels of Leukemia, but she still had a small percentage of ALL in her spinal fluid.  This was not truly surprising, because they had focused on the AML.  The problem was if they failed to achieve a deep remission with chemotherapy, they would be unable to do a bone marrow transplant (it would just fail), and a transplant was Nicole's only chance at survival.


January 8, 2012; courtesy of Captured Moments Photography.  Our neighbor graciously asked if she could come to our home and do a family portrait - at the time, I felt it might be our only opportunity to have a portrait with all of our children (and son-in-law), and we gratefully accepted the offer.

For the second round they used chemotherapy more focused on the ALL.  Nicole's ANC took much longer to recover the second time, but at the end, there was no detectable Leukemia in her system.  The doctors planned to do a third round of chemotherapy, and then go to transplant.  We got to have her home for 10 days at the beginning of March.  Two weekends home was so nice!  Unfortunately, due to later complications, she would then remain hospitalized without a reprieve for the next seven months.

January 24, 2012; in the middle of round 2

          March 12, 2012; thrilled to be going back to PCMC for round 3; perhaps she knew what lay ahead...

*****

Elder Neal A. Maxwell said:  "If we are serious about our discipleship, Jesus will eventually request each of us to do those very things which are most difficult for us to do."  (Maxwell, Time to Choose, 46).

It is often difficult to submit to God's will, at least for me.  From the very beginning, Cathy and I had to accept the reality that Nicole may die from Leukemia.  We also had to accept that making the choice for Nicole to fight also meant making the choice for her to suffer.  With Leukemia, there is some real truth in the statement that the cure may be worse than the disease.  This is particularly true if a bone marrow transplant is involved.  If you choose to fight, but you're losing, how do you know to recognize when you've reached the point of no return, and it is time to surrender and go from this life to the next?  As a parent of an infant or young child, you must make these terrible decisions, because your child cannot.  You have to think about funeral and burial arrangements, because no matter what you wish, the reality is there.  Even now, in our present circumstances, Nicole could live to be 102, or she could be gone before Thanksgiving, and that is the reality that we live in.

Brent, one of my younger brothers, passed-away earlier this year.  I miss him; I miss my little brother.  He was a pharmacist and early in his career, he spent time working with chemotherapy drugs and the patients who needed them.  Over the first several months after Nicole was hospitalized, we had a number of phone conversations, and frequently during the course of these conversations, he would urge me to stop fighting and let Nicole go.  He was always sincere and earnest; Brent believed that the best course of action for Nicole, and the best course of action for our family, was for us to take her home and allow her to die, and he was very persuasive with his arguments.

Brent had seen first-hand both short-term and long-term effects of the kind of treatments Nicole was receiving.  He had seen first-hand both short-term and long-term physical, emotional, and financial effects on the parents and families of children with Leukemia.  He felt the price too high to pay; he didn't want Nicole to suffer needlessly and our family to be ruined.  And as time went on, Brent understood that Nicole's situation was definitely on the "worst-case" side of the Leukemia spectrum, and what that meant.  "Why," he would ask.  "James, if you truly believe in God, and in an afterlife, as you profess, then why do you put her through this?  You claim to have faith in God, but you cling to life as hard as an atheist.  I thought you believed in the salvation of little children, and that 'families are forever.'"

My response was, "Brent, I know that you love me and that you are counseling me in the spirit of what you truly think is best for Nicole and the rest of us.  But believe me when I say that Nicole and her suffering is foremost in my thoughts.  I pray constantly that Heavenly Father will help us to know what is right for Nicole, and I am willing to give her to Him if He wants to take her.  But I feel in my heart that Nicole wants to fight, and that Heavenly Father is allowing her this choice; she is willing to fight, and as long as she is willing, then we will fight with her!  We will not give up on Nicole so long as she chooses to fight."

Elder Bruce C. Hafen wrote the following:  "When Elder [Neal A.] Maxwell learned in 1996 that he had leukemia, the diagnosis was discouraging. He had worked for years on making himself “willing to submit” (Mosiah 3:19) to the Lord’s will. If it was time to face death, he didn’t want to shrink from drinking his bitter cup."

"But his wife, Colleen, thought he was too willing to yield. With loving directness, she said that Christ Himself earnestly pleaded first, “If it be possible, let this cup pass from me.” Only then did He submit Himself, saying, “Nevertheless not as I will, but as thou wilt” (Matthew 26:39). Elder Maxwell saw his wife’s doctrinal insight and agreed. As a result, they pleaded together that his life might be spared. Motivated by their determination, Elder Maxwell’s doctor found a new medical treatment that prolonged his life for several years."  (https://www.lds.org/ensign/2007/08/crossing-thresholds-and-becoming-equal-partners?lang=eng).

The Bible Dictionary says the following under the heading of "Prayer": "Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other. The object of prayer is not to change the will of God but to secure for ourselves and for others blessings that God is already willing to grant but that are made conditional on our asking for them. Blessings require some work or effort on our part before we can obtain them. Prayer is a form of work and is an appointed means for obtaining the highest of all blessings."  (https://www.lds.org/scriptures/bd/prayer?lang=eng&letter=p).

I know this to be true.  I know that Nicole is alive today because of the multitude of prayers offered by so many people, adults and children, that "...have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament—the Lord hath sworn and decreed that they shall be granted."  (D&C 98:2).

There is a scripture that I had read countless times prior to Nicole's illness that had never been of any moment to me.  It was during these first few months that the Lord helped me 'discover' it, and it has since become an anchor for my soul.  The context of the scripture is that the Spirit of Lord is showing the prophet Nephi a vision of the future and he is about to be shown the birth and ministry of the Savior:

"And [the Spirit of the Lord] said unto me: Knowest thou the condescension of God?  And I said unto him: I know that he loveth his children; nevertheless, I do not know the meaning of all things."  (1 Nephi 11:16-17, emphasis added).

I cannot think of a concise way to convey my feelings about this scripture, so I will ramble a little and hope that I can get there somehow.

Too often, childhood Leukemia kills innocent children; it breaks individuals; it disintegrates families.  This is the world that Nicole and our family lives in now.  I can't really describe what it's like; before Nicole, if a parent of a child afflicted with Leukemia had attempted to explain to me what their child was suffering through, the agony of the treatment, and what it was doing to their family... I'd like to believe that I would have sincere empathy for that family, but I am certain that I could not have understood, could not truly comprehend what they were enduring.  Now, on the other hand, such a parent doesn't really need to say much at all to me - to some extent, we just understand each other.

I also recognize that there are other circumstances, other tragedies that happen every single day that are every bit as crushing and heart-wrenching as those found in the childhood Leukemia world, and that there are things worse than Leukemia.  I hope that the lessons I am learning in "my world" help me to have greater empathy and compassion for others who are suffering adversity in "their world" whatever it may be.  But just like the childhood Leukemia world, I know that I cannot truly grasp what another person is suffering in their world.  Even with Leukemia, each and every situation, every instance is unique and cannot be directly compared.

One thing that both Cathy and I have learned on this journey with Nicole is that you cannot really compare one situation to another; you most certainly cannot say to someone, "been there, done that," because you haven't.  You have not "been there," and you have not "done that."  I have made a solemn vow to myself that I will never say, "been there, done that" to anyone.  For any reason.  Ever.  "Even a fool, when he holdeth his peace, is counted wise: and he that shutteth his lips is esteemed a man of understanding."  (Proverbs 17:28).  Words to live by...

Most of the time, Cathy and I feel compassion and empathy from others with respect to Nicole's circumstance, and we are so very grateful for these simple but sincere expressions - they help strengthen us and give us courage.  But, from time to time, people do say things that minimize what Nicole is enduring compared to something that they have previously experienced, or are currently experiencing.  I have become very conscious of this, and I try to be careful not to unintentionally convey this kind of feeling to others who express difficulties in their own lives.  And I never, never want to intentionally try to "one-up" someone else's problems compared to my own.

It is so easy to think about all that Nicole has lost, all the things that Leukemia has robbed her of, and may yet take from her.  It is easy to think about the things that her Leukemia has robbed our other children of.  However, as Cathy has written, we have also grown and been taught, and have gained insight and understanding that could be obtained in no other way.  Nicole is my little heroine, and whenever I feel annoyed that I have to suffer some small inconvenience, if I simply remember Nicole and what I have witnessed her endure, those feelings immediately melt away into gratitude to my Heavenly Father for all that He has blessed me with.

I do not know the meaning of all things.  I do not know why Nicole has Leukemia.  I do not know why so many children that we have known over the past three years have died, while Nicole, who should have died, has not.  I do not know why terrible things happen to innocent people the whole world over.  I do not know the meaning of all things.  But, I do know that God loveth His children.

During one of the many periods when the prophet Joseph Smith and his fellow saints were suffering terrible persecution, he prayed earnestly for deliverance.  This was the Lord's response:  "My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes."  (D&C 121:7-8).

I take courage from those words.  I know that I am not yet worthy for the Lord to say those words to me, but I hope to become so.  God does not typically remove adversity from our lives, but He will always strengthen us to get through it, if we let Him.  Mortality is designed to help shape us into God's image, to purify and refine us, as He is pure; everyone suffers adversity.  Ultimately, it is how we choose to respond to adversity that makes all the difference.  Like the prophet Nephi, I know that God loveth his children; nevertheless, I do not know the meaning of all things.