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
Scripture 2: http://ourlittlenicole.blogspot.com/2014/09/scripture-2-i-know-that-god-loveth-his.html
Scripture 3: http://ourlittlenicole.blogspot.com/2014/09/scripture-3-marrow-to-thy-bones.html
Transplant: http://ourlittlenicole.blogspot.com/2014/09/nicoles-first-bone-marrow-transplant.html
*****
In the six months from when Nicole was first diagnosed to the time of her bone marrow transplant, it wasn't all bad, all misery; there were good days. In fact, a visitor to a patient in Immune Compromised Services (ICS) may leave the unit with the impression "that doesn't seem so bad," depending on the timing, frequency, and duration of their visits. However, anyone who has actually spent much time there knows that such an impression is false. But nonetheless, Nicole did have many good days, and she patiently endured challenges, and it was usually easy to get her happy for a picture. On the other hand, it is hard to watch your child suffer, and hard to take a picture of your child when they are suffering. We don't have many of those kind of pictures, not because suffering is uncommon in ICS, but because it feels...I don't know...it just feels wrong, somehow; it is very hard to take such pictures. It was much easier to take pictures like these:
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| March 17, 2012; happy to be with mom. |
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| March 25, 2012; in a couple days, Nicole's central line will get infected, be removed, and then a PICC line will be placed in her right arm. |
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| April 29 2012; and the no-binky ones too. |
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| April 23 2012; we love the binky smiles... |
In this series of posts, I've glossed-over, or entirely omitted many unpleasant details that Nicole endured - things that were often repeated day-in and day-out. From January through May, Nicole spent about six weeks in the Pediatric Intensive Care Unit (PICU), usually two to five days at a time, spread over those five months. She could be just fine one day, and then in PICU the next. I gained a much greater appreciation for what our bodies normally do for us in fighting common infections, and a greater understanding of how dangerous a simple infection can be to an immune-compromised body. We grew quite accustomed to PICU; when Nicole would go back to the ICS unit, someone would often say something like, "I'm sure it's a relief to be out of PICU and back here." Many patients go through treatment without spending a single day in PICU (like Nicole, since her relapse), but PICU wasn't scary to us anymore; it was just part of the routine, and when Nicole did go there, it was needed, and we were grateful that she was getting the care she required, whether that was in ICS or in PICU.
But even in ICS, there were plenty of challenges, like difficulty breathing and needing to be on oxygen, high heart rate, low heart rate, high blood pressure, low blood pressure, diarrhea, nausea, vomiting, infection, pain med withdrawals, and so forth. Sometimes she was miserable and would cry, and sometimes she was too weak, too sick to cry. Through all of this, Cathy and I did our best to comfort her, and so did the medical staff, but as days turned into weeks, and weeks turned into months, it got harder and harder to see Nicole suffer and endure, especially in the May timeframe. As time dragged-on, it became more and more difficult to remember what life what like before Nicole became sick.
I was able to hold it together for the most part, but there were some nights that I couldn't keep tears of frustration from welling-up in my eyes as I rocked Nicole and sang to her. I would silently plead to Heavenly Father to send His angels to comfort and strengthen her. There were some nights that as I drove away from the hospital, I would cry out to Heavenly Father, and say "I can't do this anymore, I can't do this for one more day - please help me, please make Nicole well and let us bring her home!"
I know that angels did watch over Nicole, and that Heavenly Father strengthened me. But on more than one occasion, as I poured out my soul in prayer, the still, small voice would simply say to me, "be patient." That was the answer I often received - "be patient." Most of the time, I would collect myself and humbly respond, "ok, I will be patient," but I admit there were a few times that I was petulant, and instead responded, "I have been patient; I don't want to be patient anymore; I'm tired of being patient; I just want this to end!" At such times, it took great effort to remind myself that the object of prayer is not to change the will of God, but bring my will into correspondence with His (see paragraph 7: https://www.lds.org/scriptures/bd/prayer?lang=eng&letter=p).
And so, in May, after agreeing again to be patient, I started thinking about the Savior and His mortal ministry, and in an effort to gain more understanding, I started asking myself some questions: "What would Jesus do? What do I need to do? If Christ were here, in my situation, what would He do? I need to be patient, yes, but what do I need to do?" I started going through the four Gospels in the New Testament, asking these questions as I did so. It didn't help. In fact, quite the opposite; it made me frustrated, even a little angry - now I already knew this, and given Nicole's circumstance, this was all that I seemed to be able to focus on, but I could hardly turn a page without reading about Jesus performing miracles, healing people. For example:
"And, behold, a woman, which was diseased with an issue of blood twelve years, came behind him, and touched the hem of his garment: For she said within herself, If I may but touch his garment, I shall be whole. But Jesus turned him about, and when he saw her, he said, Daughter, be of good comfort; thy faith hath made thee whole. And the woman was made whole from that hour." (Matthew 9:20-22).
"And there came a leper to him, beseeching him, and kneeling down to him, and saying unto him, If thou wilt, thou canst make me clean. And Jesus, moved with compassion, put forth his hand, and touched him, and saith unto him, I will; be thou clean. And as soon as he had spoken, immediately the leprosy departed from him, and he was cleansed." (Mark 1:40-42).
"Now when he came nigh to the gate of the city, behold, there was a dead man carried out, the only son of his mother, and she was a widow: and much people of the city was with her. And when the Lord saw her, he had compassion on her, and said unto her, Weep not. And he came and touched the bier: and they that bare him stood still. And he said, Young man, I say unto thee, Arise. And he that was dead sat up, and began to speak. And he delivered him to his mother." (Luke 7:12-15).
"And a certain man was there, which had an infirmity thirty and eight years. When Jesus saw him lie, and knew that he had been now a long time in that case, he saith unto him... Rise, take up thy bed, and walk. And immediately the man was made whole, and took up his bed, and walked..." (John 5:5-6, 8-9).
The above examples represent just a sampling of the many instances where the Savior exercised his power to heal people. "What would Jesus do? He would heal Nicole!" If Jesus were here, he would heal my daughter; that was the (seemingly) inescapable conclusion that I came to, and it was so frustrating!
But in my heart, I knew better; I knew that this line of thinking was unproductive, and I was allowing these negative emotions to make me bitter. It wasn't that I wanted to be bitter; it was really just that I was worn-out, and I did want Nicole to be healed, and sad to say, but probably almost as much for my own sake as for hers at that point. I didn't want to be patient; I wanted Nicole to be home and our family situation to be "normal" again.
I knew that heartache and affliction is part and parcel of our mortal experience, and I knew that this was a refining process for our family, but I was at the limit of my endurance. It is one thing to know something intellectually, in the abstract, but it is quite another thing to be wise and have the courage to actually live in conformance to that truth, especially under adverse circumstances.
Anyway, I got past my frustration, and then I had the thought, "Sure, Jesus would heal Nicole if He were here, but He isn't here, He's there, in heaven, so maybe what He will do is take her there; maybe her time here in mortality is coming to a close." I considered that for a while. I prayed about it, thought about it some more. I vividly remembered the Spirit's words from December, as Nicole was being life-flighted to PCMC and Cathy and I were driving down there, "You will have her for a time." Maybe the Lord would take her soon; maybe she wouldn't make it to the bone marrow transplant, or maybe it wouldn't work out? I pondered and prayed on this for a several days. I never got a strong answer. Instead, I just had an impression, a quiet feeling that Nicole would get through the transplant, that we would get her home. It wasn't much, but I held on to it, hoping that it was from the Lord, and not just my wishful thinking.
The Savior made it abundantly clear that that a person must have faith in order to be healed, and he often said something like, "Thy faith hath made thee whole." (see Mark 5:34, Mark 10:52, and Luke 17:19, for example). So the next thing I examined was my faith in God, or the lack thereof. I knew that I was (and am) far from perfect, but after some serious introspection, I concluded that this wasn't the problem; I had faith in God's power to raise Nicole from her bed of affliction. I also knew that I was far from the only person who was exercising their faith in Nicole's behalf. I knew that Nicole was alive precisely because of the power of God, and precisely because of the countless sincere prayers being offered for her recovery. I held the Melchizedek priesthood and I felt that I was sufficiently worthy for God to exercise His power through me. Whenever I gave Nicole a blessing, I wanted nothing more than to say, in the name of the Lord, "be healed". But it was God's power, not mine, and the Spirit never gave me leave to say those words. Despite my weakness, I concluded that it was not a question of lacking sufficient faith in God, or sufficient worthiness to act in His name, it was simply not God's will that the burden be removed and Nicole be miraculously healed. The Savior Himself could only heal Nicole if it were His Father's will that He do so (see John 5:30, 3 Nephi 11:10-11).
Still, it was hard, because I knew that God's compassion is supreme; in the Book of Mormon when the resurrected, glorified Savior came and ministered to the people of Nephi, the prophet Mormon recorded: "And it came to pass that when Jesus had thus spoken, he cast his eyes round about again on the multitude, and beheld they were in tears, and did look steadfastly upon him as if they would ask him to tarry a little longer with them. And he said unto them: Behold, my bowels are filled with compassion towards you. Have ye any that are sick among you? Bring them hither. Have ye any that are lame, or blind, or halt, or maimed, or leprous, or that are withered, or that are deaf, or that are afflicted in any manner? Bring them hither and I will heal them, for I have compassion upon you; my bowels are filled with mercy. For I perceive that ye desire that I should show unto you what I have done unto your brethren at Jerusalem, for I see that your faith is sufficient that I should heal you. And it came to pass that when he had thus spoken, all the multitude, with one accord, did go forth with their sick and their afflicted, and their lame, and with their blind, and with their dumb, and with all them that were afflicted in any manner; and he did heal them every one as they were brought forth unto him...And it came to pass that he commanded that their little children should be brought. So they brought their little children and set them down upon the ground round about him, and Jesus stood in the midst; and the multitude gave way till they had all been brought unto him...and he took their little children, one by one, and blessed them, and prayed unto the Father for them." (3 Nephi 17:5-9, 11-12, 21). Had the Savior had wanted to, he could have healed all of the sick in the gathered multitude with a word, but instead, he ministered to them one by one; He could have pronounced a blessing on all of the children at once, but instead, he ministered to them one by one.
On the other hand, I remember many years ago, a person stating their opinion, rather forcefully, that if the members of the Church of Jesus Christ of Latter-day Saints had sufficient faith in God, there would be no crippled, no ill people among us, that there would be no people in wheelchairs at our conferences, and so forth. I don't believe that; I didn't when I heard it then, and I still don't believe it now. The apostle Paul wrote a discourse on faith in his letter to the Hebrews, and after reminding his readers of a multitude of miracles that were wrought by the ancients through their faith, he wrote: "And others had trial of cruel mockings and scourgings, yea, moreover of bonds and imprisonment: They were stoned, they were sawn asunder, were tempted, were slain with the sword: they wandered about in sheepskins and goatskins; being destitute, afflicted, tormented; (Of whom the world was not worthy:) they wandered in deserts, and in mountains, and in dens and caves of the earth. And these all, having obtained a good report through faith, received not the promise [of deliverance from their afflictions]: God having provided some better things for them through their sufferings, for without sufferings, they could not be made perfect." (Hebrews 11:36-40, JST verse 40, emphasis added).
I could elaborate further, and give additional illustrations from the scriptures, but the following statement by Elder Dallin H. Oaks, given in a general conference address in April, 2010, expresses my feeling on the matter far more eloquently than I can: "As children of God, knowing of His great love and His ultimate knowledge of what is best for our eternal welfare, we trust in Him. The first principle of the gospel is faith in the Lord Jesus Christ, and faith means trust. I felt that trust in a talk my cousin gave at the funeral of a teenage girl who had died of a serious illness. He spoke these words, which first astonished me and then edified me: 'I know it was the will of the Lord that she die. She had good medical care. She was given priesthood blessings. Her name was on the prayer roll in the temple. She was the subject of hundreds of prayers for her restoration to health. And I know that there is enough faith in this family that she would have been healed unless it was the will of the Lord to take her home at this time.' I felt that same trust in the words of the father of another choice girl whose life was taken by cancer in her teen years. He declared, 'Our family’s faith is in Jesus Christ and is not dependent on outcomes.' Those teachings ring true to me. We do all that we can for the healing of a loved one, and then we trust in the Lord for the outcome." (https://www.lds.org/general-conference/2010/04/healing-the-sick?lang=eng). This is how I felt in 2012, and how I still feel now. If Nicole lives, it is because it is God's will that she lives. If she dies, it is His will that she should die; my faith, our family's faith, is in Jesus Christ and is not dependent on outcomes.
Nicole's transplant came and went, and I kept pondering over healing, faith, and the will of the Lord. June wasn't a really pleasant month, but it was much better than May (and much better than July, as it would turn out).
Among other things that happened in June, once she seemed to be getting over her mucositis (caused by the radiation and chemotherapy treatments in preparation for her transplant) they took her off the PCA morphine pump (which was hooked-up to her central line) and switched to oxycodone, which they administered orally (through her feeding tube). This is the same thing they'd done during past treatments. They would slowly taper-off the oxycodone to continue to manage pain, but also so that she wouldn't suffer too badly from withdrawal.
However, at the point they started doing this following transplant, her stomach still couldn't handle anything (she was still on IV nutrition), and whenever they gave her oral medicine, she would inevitably vomit within a minute or two after receiving it. So they'd give her the oxy, but she'd just vomit it right back up, and the nurses couldn't re-dose her. Because of this, Nicole went virtually cold-turkey off the morphine pump, and it was pure misery for her for five or six days. Although there were a couple little things that frustrated us a bit from time to time throughout Nicole's hospitalization, this is the one (and only) time that Cathy and I got really upset about how Nicole's treatment was handled, and after a couple days, I expressed my displeasure to one of the bone marrow doctors and nurse practitioners, but it didn't do any good. I'm over it now, but I admit that as I re-lived this experience in my mind, I got little upset, and I had to let it go once again.
Nicole was always on several medications of one sort or another, but after transplant, she was on even more, considerably more, in fact, but I want to mention just two; she received both anti-rejection/immune suppression medicine (which also causes rapid hair growth), and also steroids (which also causes weight gain and a dramatic change in appearance). Nicole quickly went from a tiny, frail infant, to a large, chunky one. She jumped from wearing 9-12 month clothes to 2T, seemingly overnight.
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| June 4, 2012; already gaining weight, and starting to get the 'BMT steroid look'. |
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| June 21, 2012; really chunking-out - Nicole's weight literally doubled in just 5 - 6 weeks. |
I don't remember the exact circumstances, but during the first part of June, I read a familiar scripture by the prophet Alma about the Savior, who was yet to come to earth: "And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people. And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities. Now the Spirit knoweth all things; nevertheless the Son of God suffereth according to the flesh that he might take upon him the sins of his people, that he might blot out their transgressions according to the power of his deliverance; and now behold, this is the testimony which is in me." (Alma 7:11-13).
As I read this scripture, the Spirit testified to my spirit that the words were true. I received a renewed witness that the Savior knew what Nicole was going through. And He didn't know in a merely academic sense; He knew through personal experience. The witness of the Holy Ghost that came to me when I read this scripture was simple, but as I have pondered on it (both at that time and since then), this scripture has sunk deep into my bones. As I wrote in the first post in this series, the words in the scriptures that I share in these posts are no longer just words on a page, they no longer simply convey information or intellectual knowledge to me; they are living truth, and whenever I think on this scripture, I feel that same spirit, that same testimony that I felt in June, 2012.
In conjunction with this scripture, the Lord also gave me another insight at that time: Yes, Jesus would heal Nicole if He were here, but how long did the people in the scriptures wait to be healed? In some instances, it was only a short time, perhaps just hours or days, but many cases, it seems they endured much, much longer before the Savior laid His hands on them and healed them; "a man which was blind from his birth" (John 9:1); "a woman, which was diseased with an issue of blood twelve years" (Matthew 9:20); "a certain man...which had an infirmity thirty and eight years." (John 5:5). These individuals waited a very long time for their miracle. How long did the people of Nephi endure their afflictions before the resurrected Savior came and healed them? And the fact is, some people aren't healed; to some, the Master never came and ministered to their relief. But God provides "some better things for them through their sufferings." (JST Hebrews 11:40). All that we can do is, "do all that we can for the healing of a loved one, and then we trust in the Lord for the outcome." (Oaks, CR, 2010, emphasis added).
I know that our Redeemer, Jesus Christ, has taken upon Him the pains and the sicknesses of His people; I know He is full of mercy, that His bowels are filled with compassion toward each one of us. I know that the Savior has loosed the bands of death, and that through His atoning sacrifice, every soul will be resurrected. I know that through repentance and striving to follow the example of our Savior, we can be cleansed of our sins, sanctified; that we can become one with the Father and the Son (see John 17); that we can become "heirs of God, and joint-heirs with Christ" (see Romans 8:17), and "receive eternal life, which gift is the greatest of all the gifts of God." (see Doctrine and Covenants 14:7).
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