Monday, September 29, 2014
Saturday, September 27, 2014
Nicole's First Bone Marrow Transplant
This is the fifth 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
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
*****
There is too much for me to include in a single post, so I will not get to "Scripture 4" in this one...
When Nicole was first diagnosed in December 2011, we ended up taking our children out of school about a week before Christmas break started, and we all stayed in Salt Lake City (technically West Valley City) at Cathy's sister Connie's house. After much discussion about what was best, both for Nicole and for our other children, we decided that since I worked in SLC, I would be with Nicole Monday through Thursday, and then we'd switch places and Cathy would be with her Friday through Sunday.
So I would drive from Hyrum to work on Monday morning, stay in SLC, and then return to Hyrum very late on Thursday night. Each day after work, I would go to the hospital and spend the evening there. I would rock Nicole and sing to her, or read to her. Sometimes when she was really miserable, we would watch YouTube videos on my phone and that would often help to distract her. We'd watch videos of children's songs or Piano Guys videos - she loved the "Happy Together" video with the cello. She also loved a Disney "Cars" music video with the "You Might Think" song. Most nights, I would get Nicole to sleep and then leave the hospital between 10 P.M. and 11 P.M. to spend the night at my sister-in-law's house, which is about 30 minutes from the hospital.
There were times when I would sleep at the hospital, but as hard as it was to leave her each night, I couldn't sustain sleeping there over the many weeks and months that Nicole was hospitalized and still continue to function and work. Every time I did sleep at the hospital, it was near impossible for me to leave Nicole and go to work the next morning. This arrangement was only possible because she was an infant and not mobile. We relied on the nurses and technicians to take good care of her while I wasn't there, and our trust was well-founded. We shall always be grateful to the staff at PCMC, and also to Nicole's "guardian angel," Erin.
Cathy would go down first thing Friday morning and stay with Nicole until late Sunday evening, and then the cycle would repeat; this became our typical routine from January to mid-May. Then we took our children out of school a couple weeks early and moved-in with Connie for the summer. When school started in the fall, Cathy just stayed in SLC with Nicole full-time, and I brought the rest of the family back to Hyrum and commuted to work. I would usually go visit Cathy and Nicole briefly each evening after work. We made due with that arrangement for about six weeks in the fall, until Nicole was finally able to come home.
Me having a job in SLC is another example of the Lord preparing the way. Previously, I had been working in Cache Valley (close to home) as an embedded software engineer at a small company. I started working there in January 2007 as I was trying to finish-up a Bachelor's degree in Computer Engineering at Utah State University (finally graduating in 2008, at age 40). I loved my job, and I suppose the Lord knew I wouldn't leave it willingly. Due to the significant downturn of the economy in the fall of 2008, the company had to reduce their workforce, and I was eventually laid-off in April 2009. Other companies in the area had gone through lay-offs as well, so by the time I was in the market for a job, engineering positions in Cache Valley were quite scarce, and I had to quickly broaden my job hunting horizons. After about 3.5 months unemployed, in July 2009, I took a job in SLC, which is where the Lord knew I needed to be. However, we didn't (and still don't) feel right about moving closer to my work, so I get to commute.
Anyway, Nicole's third round of Chemotherapy started in March, with the bone marrow doctors anticipating that the transplant would occur at the end of April. Unfortunately, though, Nicole's ANC (Absolute Neutrophil Count) remained at zero, rather than coming back after the chemotherapy regimen was complete. This made Nicole's planned BMT (bone marrow transplant) date a moving target, and it was delayed and re-scheduled several times. I can only imagine that this was as frustrating for Nicole's donor, Laura, as it was for us.
Also, at the end of March, just a few days after Nicole received her last chemotherapy for the third round, her central line became infected. The doctors tried to get the infection under control with antibiotics, but after a couple days, and with Nicole completely lacking an immune system to help fight it, they had no choice but to remove the infected line. Since she also had a PICC line that could be used for medications and blood draws, she didn't need to have a new central line placed right away. The doctors planned to wait until her ANC recovered, and then they would put in a new central line prior to the bone marrow transplant.
Typically, a chemotherapy cycle takes about 4 weeks, including count recovery. Nicole's first cycle took 29 days; the second cycle took 43 days; the third cycle never truly completed - her ANC was zero all the way through the bone marrow transplant. After about 55 days, in the first part of May, the doctors felt that the risk of waiting any longer for ANC recovery was greater than the risk associated with proceeding with the transplant with zero ANC. Basically, they were afraid to proceed with the BMT with zero ANC, but they were even more afraid to wait it out any longer. Nicole's situation had always been fragile, and everyone was a little worried that the current window of opportunity to do the BMT might close, and if it did, it might never re-open.
At that point, we thought Nicole's BMT date was finally set with a firm date (May 18, I think) and the pre-transplant treatments were scheduled to proceed. Due to the fact that she remained totally immune-compromised, she would not be allowed to go home for even a few days.
On May 10, they placed a new central line, even though surgeons really don't like to perform surgery on immune-compromised patients, due to the high risk of infection, there really wasn't any other choice. The surgery itself went well, but when Nicole was in post-op and the nurse was preparing to put a proper dressing on the new central line, Nicole came out of her anesthesia-induced unconsciousness while the nurse's back was turned and managed to move her hand to her chest and knock-off the temporary dressing that was covering the line. Within twenty-four hours, her chest area was enflamed with infection, and once again, it couldn't be contained, so the second central line ended up lasting just three days before they had to remove it, and the BMT date was shifted yet again, to May 25, to allow time to do the necessary pre-transplant procedures. But somehow they still needed to get another central line in her, and between damage from the dialysis line and the two central lines that had been placed previously, the surgeons weren't sure how they were going to get it done...
The bone marrow team briefed us on what would happen, both before and after the transplant; this was actually a series of consultations with several different staff members. During one of these briefings, they told us that going through the BMT process is very intense - it is very hard on the patient - and many families are not prepared for this. She said that one of the primary reasons they have these consultations is to try to help the patient and their family understand that although the previous treatments they've experienced have been hard, BMT will be much, much worse. But then she said that in Nicole's case, she'd already had very challenging run, and BMT shouldn't be worse than what she's already had to deal with - "let's hope it isn't worse", she said. Unfortunately, Nicole seems to do everything the hard way...
The standard preparation for a BMT is three days of full-body radiation therapy, twice per day, followed by some very high intensity chemotherapy. This goal of this preparation is to completely eradicate the patient's bone marrow and all leukemic cells in their system. In other words, the goal of this preparation is to bring the patient to the point of death in order to provide an opportunity to give the patient life. In Nicole's case, due the extent to which the leukemia had originally infiltrated her system, she would also need to undergo three days of cranial-focused radiation therapy in addition to the full-body radiation therapy.
The radiation treatments were all done at the Huntsman Cancer Institute, which is about a block up the road from PCMC. At our consultation with the radiation doctor at Huntsman, we were in a small room that was too warm, and had no air circulation. As the doctor began a long litany of potential long-term side-effects that Nicole could suffer as a result of the radiation treatments, I began to feel sick, and as the doctor went on, my discomfort continued to escalate and I became light-headed; my skin was clammy, and according to Cathy, my face was as white as a hospital bed-sheet. Fortunately, I was sitting down, and could and put my head in my hands, rather than faint.
The radiation treatment for Nicole carried even higher risks than normal, because she was an infant and many of her bodily functions were still in development, and it was also higher risk because of the cranial radiation, in addition to the full-body radiation. I prayed and prayed at that time that Heavenly Father would protect Nicole - that the treatment would be effective against the leukemia but not damaging to her. I will not list the potential long-term side-effects of either the radiation therapy or chemotherapy that Nicole received; I prefer not to dwell on it - what will happen will happen, and I cannot change it.
Nicole had to be sedated for the radiation treatments, but by this time, she had undergone sedation so many times that the anesthesiologists had to administer much higher doses than normal to put her under. (Part of her chemotherapy regimen included weekly lumbar punctures to administer chemotherapy into her spinal column - this was in addition to the standard administration into the blood stream via the central line.) The radiation treatments started on Friday, May 11, with a break on the weekend, and then the other five days of treatment the following week.
By the third day of the cranial treatment, Nicole was in really bad shape and on oxygen support. The anesthesia was getting scary, and she still had three days of full-body treatment ahead of her. On the first day of the full-body radiation, they initially did a pass with her laying on her back, and then they turned her on her stomach to do another pass, but she had gotten so weak that just laying her on her stomach put her into respiratory arrest and she stopped breathing. They were able to revive her, but they didn't know how they were going to do the treatment. Fortunately, the physicist in charge of the machine had another idea; they were able raise the table as high as it would go and pass the radiation aperture underneath her. That day was a very long day at Huntsman. Her last day of radiation was May 18.
I do not know the meaning of all things, but I do know that God takes no pleasure in the suffering of His children. I know that God mourns with us, weeps with us. Nicole did not (and does not) understand why she has to go through all of this, and Cathy and I could not (and cannot) explain it to her. It may be a nurse pushing chemotherapy into Nicole, or it may be a physicist operating the machine that bombards her body with radiation, but make no mistake, Nicole's suffering is by my hand, not the nurse's hand; these awful treatments are administered to Nicole by her parent's authority and consent. Nicole suffers because her parents have ordained it - because we believe this is best for her. But unlike mortal parents, who are imperfect and prone to make mistakes, Heavenly Father makes no mistakes, and always, always acts in the best interest of each of His children, even if we can't understand it and are too limited to be able to comprehend an explanation from the Almighty.
Just as Nicole submits to all things that her parents see fit to inflict upon her, so must I "...becometh as a child, submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father." (Mosiah 3:19). I have faith in God; faith in His love for me, and faith in His love for Nicole. It is difficult at times, and I don't always succeed, but I know that lasting happiness can only be found by humbling myself and submitting to His will, and Nicole is a powerful and living reminder to me of this simple but profound truth.
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
*****
There is too much for me to include in a single post, so I will not get to "Scripture 4" in this one...
When Nicole was first diagnosed in December 2011, we ended up taking our children out of school about a week before Christmas break started, and we all stayed in Salt Lake City (technically West Valley City) at Cathy's sister Connie's house. After much discussion about what was best, both for Nicole and for our other children, we decided that since I worked in SLC, I would be with Nicole Monday through Thursday, and then we'd switch places and Cathy would be with her Friday through Sunday.
 |
| March 2012; almost 8 months old, home for a few days. |
So I would drive from Hyrum to work on Monday morning, stay in SLC, and then return to Hyrum very late on Thursday night. Each day after work, I would go to the hospital and spend the evening there. I would rock Nicole and sing to her, or read to her. Sometimes when she was really miserable, we would watch YouTube videos on my phone and that would often help to distract her. We'd watch videos of children's songs or Piano Guys videos - she loved the "Happy Together" video with the cello. She also loved a Disney "Cars" music video with the "You Might Think" song. Most nights, I would get Nicole to sleep and then leave the hospital between 10 P.M. and 11 P.M. to spend the night at my sister-in-law's house, which is about 30 minutes from the hospital.
 |
| April 10, 2012; thankful for smart phones |
 |
| March 22, 2012; a "selfie" with cousin Erin, before selfie was a word. |
Me having a job in SLC is another example of the Lord preparing the way. Previously, I had been working in Cache Valley (close to home) as an embedded software engineer at a small company. I started working there in January 2007 as I was trying to finish-up a Bachelor's degree in Computer Engineering at Utah State University (finally graduating in 2008, at age 40). I loved my job, and I suppose the Lord knew I wouldn't leave it willingly. Due to the significant downturn of the economy in the fall of 2008, the company had to reduce their workforce, and I was eventually laid-off in April 2009. Other companies in the area had gone through lay-offs as well, so by the time I was in the market for a job, engineering positions in Cache Valley were quite scarce, and I had to quickly broaden my job hunting horizons. After about 3.5 months unemployed, in July 2009, I took a job in SLC, which is where the Lord knew I needed to be. However, we didn't (and still don't) feel right about moving closer to my work, so I get to commute.
Anyway, Nicole's third round of Chemotherapy started in March, with the bone marrow doctors anticipating that the transplant would occur at the end of April. Unfortunately, though, Nicole's ANC (Absolute Neutrophil Count) remained at zero, rather than coming back after the chemotherapy regimen was complete. This made Nicole's planned BMT (bone marrow transplant) date a moving target, and it was delayed and re-scheduled several times. I can only imagine that this was as frustrating for Nicole's donor, Laura, as it was for us.
Also, at the end of March, just a few days after Nicole received her last chemotherapy for the third round, her central line became infected. The doctors tried to get the infection under control with antibiotics, but after a couple days, and with Nicole completely lacking an immune system to help fight it, they had no choice but to remove the infected line. Since she also had a PICC line that could be used for medications and blood draws, she didn't need to have a new central line placed right away. The doctors planned to wait until her ANC recovered, and then they would put in a new central line prior to the bone marrow transplant.
April 23, 2012; 9 months old - immune compromised, but feeling good
 |
| May 6, 2012; the security of holding a TV remote makes it easier to fall asleep |
 |
| May 8, 2012; it seems like this would be about the last "good" day that Nicole would have for a long time. |
The bone marrow team briefed us on what would happen, both before and after the transplant; this was actually a series of consultations with several different staff members. During one of these briefings, they told us that going through the BMT process is very intense - it is very hard on the patient - and many families are not prepared for this. She said that one of the primary reasons they have these consultations is to try to help the patient and their family understand that although the previous treatments they've experienced have been hard, BMT will be much, much worse. But then she said that in Nicole's case, she'd already had very challenging run, and BMT shouldn't be worse than what she's already had to deal with - "let's hope it isn't worse", she said. Unfortunately, Nicole seems to do everything the hard way...
The standard preparation for a BMT is three days of full-body radiation therapy, twice per day, followed by some very high intensity chemotherapy. This goal of this preparation is to completely eradicate the patient's bone marrow and all leukemic cells in their system. In other words, the goal of this preparation is to bring the patient to the point of death in order to provide an opportunity to give the patient life. In Nicole's case, due the extent to which the leukemia had originally infiltrated her system, she would also need to undergo three days of cranial-focused radiation therapy in addition to the full-body radiation therapy.
The radiation treatments were all done at the Huntsman Cancer Institute, which is about a block up the road from PCMC. At our consultation with the radiation doctor at Huntsman, we were in a small room that was too warm, and had no air circulation. As the doctor began a long litany of potential long-term side-effects that Nicole could suffer as a result of the radiation treatments, I began to feel sick, and as the doctor went on, my discomfort continued to escalate and I became light-headed; my skin was clammy, and according to Cathy, my face was as white as a hospital bed-sheet. Fortunately, I was sitting down, and could and put my head in my hands, rather than faint.
The radiation treatment for Nicole carried even higher risks than normal, because she was an infant and many of her bodily functions were still in development, and it was also higher risk because of the cranial radiation, in addition to the full-body radiation. I prayed and prayed at that time that Heavenly Father would protect Nicole - that the treatment would be effective against the leukemia but not damaging to her. I will not list the potential long-term side-effects of either the radiation therapy or chemotherapy that Nicole received; I prefer not to dwell on it - what will happen will happen, and I cannot change it.
Nicole had to be sedated for the radiation treatments, but by this time, she had undergone sedation so many times that the anesthesiologists had to administer much higher doses than normal to put her under. (Part of her chemotherapy regimen included weekly lumbar punctures to administer chemotherapy into her spinal column - this was in addition to the standard administration into the blood stream via the central line.) The radiation treatments started on Friday, May 11, with a break on the weekend, and then the other five days of treatment the following week.
 |
| May 14 2012; second day of cranial radiation complete |
 |
| May 18, 2012; final day of radiation - treatment begins in a few minutes |
On May 22, they managed to successfully place a third central line into her and immediately started the awful chemotherapy associated with bone marrow transplant (she was also on her third PICC line at this point). Bone marrow transplant preparation is brutal, even under the best of circumstances, and Nicole's already weakened body and the infections made it even worse. She had some close calls during May 2012, and it was about this time that some of the medical staff started referring to Nicole as the girl with nine lives. May 2012 was as hard as December 2011, but the Lord was with Nicole, and He preserved her life; "the works of God" (see John 9:3) were again made manifest in Nicole in May, just as they were in December. And finally, on May 25, 2012, our 10-month old Nicole received her life-saving bone marrow.
 |
| May 25, 2012, 3:40 P.M.; transplant in progress... just a simple bag, with priceless contents - the transplant itself was very similar to a normal blood transfusion. |
 |
| May 25, 2012, 5:10 P.M.; bone marrow transplant complete! We owe an eternal debt of gratitude to her donor, Laura. |
Here in mortality, each and every person experiences unjust trials and afflictions, and it can be easy to forget that "[God] loveth his children" (see 1 Nephi 11:17). It can be easy for us to turn our backs to Him and say, "if there truly is a God, then why does He permit these injustices? Why does He allow terrible things to happen? Why does He permit children suffer and die?" If mortality is our only frame of reference, then nothing makes sense. The Gospel of Jesus Christ teaches us that there is much, much more. "For behold, this is my work and my glory - to bring to pass the immortality and eternal life of man." (Moses 1:39). I know that God is the author of "the great plan of happiness" (see Alma 42:8). Our Heavenly Father, and our Savior, Jesus Christ, are mindful of each soul, and their vision encompasses eternity, not just this brief period of mortality.
I do not know the meaning of all things, but I do know that God takes no pleasure in the suffering of His children. I know that God mourns with us, weeps with us. Nicole did not (and does not) understand why she has to go through all of this, and Cathy and I could not (and cannot) explain it to her. It may be a nurse pushing chemotherapy into Nicole, or it may be a physicist operating the machine that bombards her body with radiation, but make no mistake, Nicole's suffering is by my hand, not the nurse's hand; these awful treatments are administered to Nicole by her parent's authority and consent. Nicole suffers because her parents have ordained it - because we believe this is best for her. But unlike mortal parents, who are imperfect and prone to make mistakes, Heavenly Father makes no mistakes, and always, always acts in the best interest of each of His children, even if we can't understand it and are too limited to be able to comprehend an explanation from the Almighty.
Just as Nicole submits to all things that her parents see fit to inflict upon her, so must I "...becometh as a child, submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon him, even as a child doth submit to his father." (Mosiah 3:19). I have faith in God; faith in His love for me, and faith in His love for Nicole. It is difficult at times, and I don't always succeed, but I know that lasting happiness can only be found by humbling myself and submitting to His will, and Nicole is a powerful and living reminder to me of this simple but profound truth.
Friday, September 26, 2014
100 Days Post-transplant :)
Today is Nicole's 100 day post-transplant. It is the day we have been waiting for in hope that we would be able to back home to Hyrum. However, with the challenges of her platelets, we are still here in West Valley. We don't know when we will be able to go home to Hyrum. The Bone Marrow Team is just saying sometime within the next month. Nicole did have another clinic visit today (9-26-14) and it did include another platelet transfusion. Her platelets were at 10K.
The team has decided to try another route with her platelets. They are going to start giving her an IV infusion of Rituxan. We started this today. Her first infusion should have taken 10 hours but that would have gotten me back to my sister's house around 1:00 A.M. They decided to try to give it to Nicole at the 2nd infusion rate, which only took around 5 hours :) I got back to my sister's at 8:00 P.M. (much better than 1:00 A.M.). It is discouraging that we do not know when we will be able to be together as a family in Hyrum. Today during clinic the scripture in Mosiah 4:27 came to mind: "And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength. And again, it is expedient that he should be diligent, that thereby he might win the prize; therefore, all things must be done in order." The Lord is mindful of Nicole and our family. All things must be in "wisdom and order" if we are to "win the prize".
The team has decided to try another route with her platelets. They are going to start giving her an IV infusion of Rituxan. We started this today. Her first infusion should have taken 10 hours but that would have gotten me back to my sister's house around 1:00 A.M. They decided to try to give it to Nicole at the 2nd infusion rate, which only took around 5 hours :) I got back to my sister's at 8:00 P.M. (much better than 1:00 A.M.). It is discouraging that we do not know when we will be able to be together as a family in Hyrum. Today during clinic the scripture in Mosiah 4:27 came to mind: "And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength. And again, it is expedient that he should be diligent, that thereby he might win the prize; therefore, all things must be done in order." The Lord is mindful of Nicole and our family. All things must be in "wisdom and order" if we are to "win the prize".
.JPG) |
| Nicole wouldn't let me take her picture. I decided that Kermie has also done his 100 days right along with Nicole and that he deserved a picture too :) |
.JPG) |
| After Kermit's cooperation, Nicole finally let me take a picture but she refused to look at the camera. |
.jpg) |
| Here is Nicole playing at clinic. Again she refuses to look at the camera. I think she has a little rebellious streak in her :) |
Tuesday, September 23, 2014
Similitude
Like Nicole's past few weeks of clinic visits, today (9-23-14) included a platelet transfusion. Her platelets were down to 5k. We also went down to audiology for her 100 days post transplant for a hearing test while we waited for her platelets to be sent up. Her hearing seems great!
Since Nicole is now on cyclosporine, we need to watch the side effects of it. One of them is high blood pressure. Nicole has struggled with high blood pressure during this journey. Now it is high enough that they are going to put her on high blood pressure medicine. She is also high in potassium. They told me to avoid foods that are high in potassium. I looked at them and said "she doesn't eat anything orally". So they decided to add some diuretic to help her pee off the extra potassium.
Nicole has spent most of her life battling cancer. I am starting to feel like a broken record when it comes to what is going on with her recovery. The cancer world has become our world. I have wondered what life was like before Nicole was diagnosed in December 2011. What will life be like when we stop worrying about her next lab results.
Even as I am typing this I can't help but feel a heavy heart for so many warriors who are lost to the battle of cancer. The children we meet have such a special place in my heart, and each time I hear that another cancer family hears the words "there is nothing else we can do" my heart breaks for them. Each time I hear a bell ring, whether in clinic or when we were in the ICS unit, my heart shouts for joy that a child is done with treatment. The bell ringing is a joyful day, but I also say a silent prayer that they will stay in remission and not relapse.
I know that childhood cancer will always hold a place in my heart. I know that being part of this world is where I have came to know our Savior and Redeemer better. I feel a great love for the children, and for their families. James E. Faust once said: "Here then is a great truth. In the pain, the agony, and the heroic endeavors of life, we pass through a refiner’s fire, and the insignificant and the unimportant in our lives can melt away like dross and make our faith bright, intact, and strong. In this way the divine image can be mirrored from the soul. It is part of the purging toll exacted of some to become acquainted with God. In the agonies of life, we seem to listen better to the faint, godly whisperings of the Divine Shepherd." (https://www.lds.org/ensign/1979/05/the-refiners-fire?lang=eng)
Since Adam and Eve, the Lord has asked His children to make sacrifices in similitude of our Savior. (see Moses 5:4-8). The word similitude is a likeness or similar to. In the Book of Mormon we are taught how we are to sacrifice in similitude today: "And ye shall offer for a sacrifice unto me a broken heart and a contrite spirit. " (3 Nephi 9:20) Just like the Savior who offered His broken heart and contrite spirit to the will of the Lord we are asked to do the same. Brother Harold G. Hillam said in a BYU speech: "We will have opportunities to be called upon to suffer. There will be times when we will have feelings of hurt and pain—physical and mental as well as spiritual—and then we will know what adversity is, and we will know a little better what Jesus Christ might have suffered, and we will have done in similitude that which Jesus Christ did." (http://speeches.byu.edu/?act=viewitem&id=745)
The 6th prophet, Joseph F. Smith, was given a vision about the spirit world in Section 138 of the Doctrine and Covenants. In verses 12-13 he describes the spirits that were waiting there after the Savior's resurrection. "And there were gathered together in one place an innumerable company of the spirits of the just, who had been faithful in the testimony of Jesus while they lived in mortality; And who had offered sacrifice in the similitude of the great sacrifice of the Son of God, and had suffered tribulation in their Redeemer’s name." [D&C 138: 12–13] I have met many children and their families in mortality who's lives are "just, who had been faithful in the testimony of Jesus while they lived in mortality".
Since Nicole is now on cyclosporine, we need to watch the side effects of it. One of them is high blood pressure. Nicole has struggled with high blood pressure during this journey. Now it is high enough that they are going to put her on high blood pressure medicine. She is also high in potassium. They told me to avoid foods that are high in potassium. I looked at them and said "she doesn't eat anything orally". So they decided to add some diuretic to help her pee off the extra potassium.
Nicole has spent most of her life battling cancer. I am starting to feel like a broken record when it comes to what is going on with her recovery. The cancer world has become our world. I have wondered what life was like before Nicole was diagnosed in December 2011. What will life be like when we stop worrying about her next lab results.
Even as I am typing this I can't help but feel a heavy heart for so many warriors who are lost to the battle of cancer. The children we meet have such a special place in my heart, and each time I hear that another cancer family hears the words "there is nothing else we can do" my heart breaks for them. Each time I hear a bell ring, whether in clinic or when we were in the ICS unit, my heart shouts for joy that a child is done with treatment. The bell ringing is a joyful day, but I also say a silent prayer that they will stay in remission and not relapse.
I know that childhood cancer will always hold a place in my heart. I know that being part of this world is where I have came to know our Savior and Redeemer better. I feel a great love for the children, and for their families. James E. Faust once said: "Here then is a great truth. In the pain, the agony, and the heroic endeavors of life, we pass through a refiner’s fire, and the insignificant and the unimportant in our lives can melt away like dross and make our faith bright, intact, and strong. In this way the divine image can be mirrored from the soul. It is part of the purging toll exacted of some to become acquainted with God. In the agonies of life, we seem to listen better to the faint, godly whisperings of the Divine Shepherd." (https://www.lds.org/ensign/1979/05/the-refiners-fire?lang=eng)
Since Adam and Eve, the Lord has asked His children to make sacrifices in similitude of our Savior. (see Moses 5:4-8). The word similitude is a likeness or similar to. In the Book of Mormon we are taught how we are to sacrifice in similitude today: "And ye shall offer for a sacrifice unto me a broken heart and a contrite spirit. " (3 Nephi 9:20) Just like the Savior who offered His broken heart and contrite spirit to the will of the Lord we are asked to do the same. Brother Harold G. Hillam said in a BYU speech: "We will have opportunities to be called upon to suffer. There will be times when we will have feelings of hurt and pain—physical and mental as well as spiritual—and then we will know what adversity is, and we will know a little better what Jesus Christ might have suffered, and we will have done in similitude that which Jesus Christ did." (http://speeches.byu.edu/?act=viewitem&id=745)
The 6th prophet, Joseph F. Smith, was given a vision about the spirit world in Section 138 of the Doctrine and Covenants. In verses 12-13 he describes the spirits that were waiting there after the Savior's resurrection. "And there were gathered together in one place an innumerable company of the spirits of the just, who had been faithful in the testimony of Jesus while they lived in mortality; And who had offered sacrifice in the similitude of the great sacrifice of the Son of God, and had suffered tribulation in their Redeemer’s name." [D&C 138: 12–13] I have met many children and their families in mortality who's lives are "just, who had been faithful in the testimony of Jesus while they lived in mortality".
 |
| Snuggles with sisters |
.JPG) |
| Loves to eat her "tubey!" |
Sunday, September 21, 2014
Scripture 3 - Marrow to Thy Bones
This is the fourth 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
Scripture 2: http://ourlittlenicole.blogspot.com/2014/09/scripture-2-i-know-that-god-loveth-his.html
*****
Three years ago, if someone had asked me what bone marrow does or why it is so important, I would've probably shrugged and said something like, "I don't know. Isn't it related to the blood somehow?" I was blissfully ignorant of how fundamental bone marrow is to life itself. When we finally learned that Nicole was dying because her bone marrow was malfunctioning...well, suffice to say that suddenly I had a much keener interest in this subject.
For a bone marrow transplant, the doctors look at 10 different markers to match a donor to a patient. If a 10-for-10 match cannot be found, a 9/10 match, or even an 8/10 match can be used, but as the number goes down, the probability that the transplant will be successful decreases.
For various reasons, a sibling donor match is preferred over a non-related donor match. The probability that a sibling will be a match is about 1 in 4 (25%). The probability of a non-related donor match being found in the bone marrow donor registry varies greatly; it can be as high as 1 in 500 (0.2%) or less than one in a million (0.0001%), depending on the marrow/tissue type of the patient, and depending on the individuals who are in the bone marrow donor registry (see http://bethematch.org/). Based on the number of donors in the registry and the number of potential matches in the registry for Nicole, this number seemed to be about one in one hundred thousand in her case.
As an aside, I briefly mention the motivation and challenges of using a parent as a donor here: http://ourlittlenicole.blogspot.com/2014/06/heroines-saviors.html. This was not really an option back in 2012 - they've never even attempted using a parent donor at PCMC until this year - and even if it had been an option, it would have been a last resort.
Anyway, in Nicole's case, since she has six siblings, it seemed likely that at least one of them was a match. The mathematical probability that at least one of her six siblings was a match was approximately:
1 - (3/4)^6 = 1 - (729 / 4096) = 82.2%
As it turned out, none were a match. Sometimes math really is useless.
Fortunately, however, there were several potential donor matches for Nicole in the registry. After the second round of chemotherapy ended in March, the doctors planned to do a third round of chemotherapy and then go to transplant, which they assumed would take place at the end of April, depending on Nicole's ANC recovery following the chemotherapy. Nevertheless, we were very anxious about Nicole being able to receive a bone marrow transplant; we were totally dependent on a complete stranger with the "right" bone marrow being willing to donate to our daughter; no bone marrow transplant would mean no chance for Nicole to live...
The scripture focus of this post is closely related to the temple; the House of the Lord. As such, I cannot give full expression of certain things, so I want to first share a song written by sister Janice Kapp Perry, titled, "I Love to See the temple", which can be found in the Children's Songbook (https://www.lds.org/music/library/childrens-songbook/i-love-to-see-the-temple?lang=eng):
"I love to see the temple. I'm going there someday
To feel the Holy Sprit, To listen and to pray.
For the temple is a house of God, A place of love and beauty.
I'll prepare myself while I am young; This is my sacred duty.
I love to see the temple. I'll go inside someday.
I'll covenant with my Father; I'll promise to obey.
For the temple is a holy place Where we are sealed together.
As a child of God, I've learned this truth; A family is forever."
Normally, Cathy and I try to attend the temple weekly; together if possible, separately when required. However, this practice was disrupted when Nicole was hospitalized, and there were periods that we did not attend as often in 2012. During the first few months of Nicole's hospitalization, Cathy continued to attend the Logan temple weekly on her own, but I did not.
When Nicole came home in March, between her second and third round of chemotherapy, we asked our oldest daughter, Kersten, to come and be with Nicole (and the rest of our children) while we took a couple hours to go to the Logan temple; I hadn't been in three months, since before Nicole had gotten sick, and very much wanted to go; the temple is a place of revelation and power, and I desperately needed the rejuvenation that can only be found in the House of the Lord. So we went...
Since I am not at liberty to write details and provide context, I will just state that near the conclusion of the temple endowment ordinance that we were participating in, the Spirit of the Lord whispered to my soul; it was a truly profound, revelatory experience. I cannot attend the temple without being reminded of this. Comfort was given, promises were made. Cathy had previously had similar experiences to mine while she had been attending the temple on her own.
Later, as I was reflecting on this experience, I was reminded of a scripture in D&C 89 that mentions "marrow" in reference to living the Lord's law of health: "And all saints who remember to keep and do these sayings, walking in obedience to the commandments, shall receive health in their navel and marrow to their bones; And shall find wisdom and great treasures of knowledge, even hidden treasures; And shall run and not be weary, and shall walk and not faint. And I, the Lord, give unto them a promise, that the destroying angel shall pass by them, as the children of Israel, and not slay them. Amen." (D&C 89:18-21).
I did some searching in the scriptures, and it turns out that there are only a handful of other scriptures that reference "marrow"; one that stood out to me is part of a scripture that I was familiar with, and is often quoted, but it's only the first two verses that get quoted. The second two verses are still part of the same thought being expressed, but I didn't recall ever hearing them before. Here are all four verses: "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Be not wise in thine own eyes: fear the Lord, and depart from evil. It shall be health to thy navel, and marrow to thy bones." (Proverbs 3:5-8).
Nicole's bone marrow was defective - it was killing her - but I felt that God had told me that a suitable donor would be found, and that Nicole would have a successful transplant. My experience in the temple and with these scriptures helped to fortify me, and I would need this reassurance in the weeks to come...
So in March, the bone marrow transplant team started the process of getting a donor lined-up for Nicole. I don't know how many of the handful of potential donor candidates were contacted, but the one that was ultimately selected and was willing to go through the bone marrow harvest was a female that also shared Nicole's blood type (A+). In other words, this was a "perfect" non-related donor match, in every way possible, and an answer to our prayers; Cathy and I felt that the hand of the Lord was in this perfect "coincidence".
At the time, this is all that we knew about Nicole's donor. And I think all that Nicole's donor was told is that the transplant was for a female infant. One year following the transplant, if we wanted to, and the donor consented, we would be allowed to make contact with her.
There is abundant testimony in the scriptures that God is a "preparer"; He prepares the way for His will and His works to be accomplished. I believe that the Lord prepared Nicole's donor, Laura, a young woman from the mid-west, to be the instrument of Nicole's deliverance during her first battle with leukemia.
Of course, this required that Laura use her agency to be willing to make the sacrifice in Nicole's behalf, the same as our Savior, Jesus Christ, was willing to make His atoning sacrifice for all of us. And just like the Savior, it was actually a series of choices that Laura made throughout her life that made it possible for her to act when the moment of crisis was upon Nicole. Unlike the Savior, though, Laura did not know Nicole, yet she had compassion on this little stranger (whom she has yet to meet); she was like the Samaritan in the parable that Jesus gave in answer to the question, "who is my neighbor?" (see Luke 10:25-37). Through Laura, God fulfilled His word, and put good marrow into Nicole's bones.
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
*****
Three years ago, if someone had asked me what bone marrow does or why it is so important, I would've probably shrugged and said something like, "I don't know. Isn't it related to the blood somehow?" I was blissfully ignorant of how fundamental bone marrow is to life itself. When we finally learned that Nicole was dying because her bone marrow was malfunctioning...well, suffice to say that suddenly I had a much keener interest in this subject.
For a bone marrow transplant, the doctors look at 10 different markers to match a donor to a patient. If a 10-for-10 match cannot be found, a 9/10 match, or even an 8/10 match can be used, but as the number goes down, the probability that the transplant will be successful decreases.
For various reasons, a sibling donor match is preferred over a non-related donor match. The probability that a sibling will be a match is about 1 in 4 (25%). The probability of a non-related donor match being found in the bone marrow donor registry varies greatly; it can be as high as 1 in 500 (0.2%) or less than one in a million (0.0001%), depending on the marrow/tissue type of the patient, and depending on the individuals who are in the bone marrow donor registry (see http://bethematch.org/). Based on the number of donors in the registry and the number of potential matches in the registry for Nicole, this number seemed to be about one in one hundred thousand in her case.
As an aside, I briefly mention the motivation and challenges of using a parent as a donor here: http://ourlittlenicole.blogspot.com/2014/06/heroines-saviors.html. This was not really an option back in 2012 - they've never even attempted using a parent donor at PCMC until this year - and even if it had been an option, it would have been a last resort.
Anyway, in Nicole's case, since she has six siblings, it seemed likely that at least one of them was a match. The mathematical probability that at least one of her six siblings was a match was approximately:
1 - (3/4)^6 = 1 - (729 / 4096) = 82.2%
As it turned out, none were a match. Sometimes math really is useless.
Fortunately, however, there were several potential donor matches for Nicole in the registry. After the second round of chemotherapy ended in March, the doctors planned to do a third round of chemotherapy and then go to transplant, which they assumed would take place at the end of April, depending on Nicole's ANC recovery following the chemotherapy. Nevertheless, we were very anxious about Nicole being able to receive a bone marrow transplant; we were totally dependent on a complete stranger with the "right" bone marrow being willing to donate to our daughter; no bone marrow transplant would mean no chance for Nicole to live...
 |
| March 8 2012; precious time at home for a few days with brother and sisters. |
 |
| March 11, 2012; nap time with sister, Rachel. |
 |
| March 12, 2012; with sister, Ana, and a small bear that arrived at our house one day. Nicole would be back at PCMC within a couple hours of this picture being taken. |
The scripture focus of this post is closely related to the temple; the House of the Lord. As such, I cannot give full expression of certain things, so I want to first share a song written by sister Janice Kapp Perry, titled, "I Love to See the temple", which can be found in the Children's Songbook (https://www.lds.org/music/library/childrens-songbook/i-love-to-see-the-temple?lang=eng):
"I love to see the temple. I'm going there someday
To feel the Holy Sprit, To listen and to pray.
For the temple is a house of God, A place of love and beauty.
I'll prepare myself while I am young; This is my sacred duty.
I love to see the temple. I'll go inside someday.
I'll covenant with my Father; I'll promise to obey.
For the temple is a holy place Where we are sealed together.
As a child of God, I've learned this truth; A family is forever."
Normally, Cathy and I try to attend the temple weekly; together if possible, separately when required. However, this practice was disrupted when Nicole was hospitalized, and there were periods that we did not attend as often in 2012. During the first few months of Nicole's hospitalization, Cathy continued to attend the Logan temple weekly on her own, but I did not.
When Nicole came home in March, between her second and third round of chemotherapy, we asked our oldest daughter, Kersten, to come and be with Nicole (and the rest of our children) while we took a couple hours to go to the Logan temple; I hadn't been in three months, since before Nicole had gotten sick, and very much wanted to go; the temple is a place of revelation and power, and I desperately needed the rejuvenation that can only be found in the House of the Lord. So we went...
Since I am not at liberty to write details and provide context, I will just state that near the conclusion of the temple endowment ordinance that we were participating in, the Spirit of the Lord whispered to my soul; it was a truly profound, revelatory experience. I cannot attend the temple without being reminded of this. Comfort was given, promises were made. Cathy had previously had similar experiences to mine while she had been attending the temple on her own.
Later, as I was reflecting on this experience, I was reminded of a scripture in D&C 89 that mentions "marrow" in reference to living the Lord's law of health: "And all saints who remember to keep and do these sayings, walking in obedience to the commandments, shall receive health in their navel and marrow to their bones; And shall find wisdom and great treasures of knowledge, even hidden treasures; And shall run and not be weary, and shall walk and not faint. And I, the Lord, give unto them a promise, that the destroying angel shall pass by them, as the children of Israel, and not slay them. Amen." (D&C 89:18-21).
I did some searching in the scriptures, and it turns out that there are only a handful of other scriptures that reference "marrow"; one that stood out to me is part of a scripture that I was familiar with, and is often quoted, but it's only the first two verses that get quoted. The second two verses are still part of the same thought being expressed, but I didn't recall ever hearing them before. Here are all four verses: "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Be not wise in thine own eyes: fear the Lord, and depart from evil. It shall be health to thy navel, and marrow to thy bones." (Proverbs 3:5-8).
Nicole's bone marrow was defective - it was killing her - but I felt that God had told me that a suitable donor would be found, and that Nicole would have a successful transplant. My experience in the temple and with these scriptures helped to fortify me, and I would need this reassurance in the weeks to come...
So in March, the bone marrow transplant team started the process of getting a donor lined-up for Nicole. I don't know how many of the handful of potential donor candidates were contacted, but the one that was ultimately selected and was willing to go through the bone marrow harvest was a female that also shared Nicole's blood type (A+). In other words, this was a "perfect" non-related donor match, in every way possible, and an answer to our prayers; Cathy and I felt that the hand of the Lord was in this perfect "coincidence".
At the time, this is all that we knew about Nicole's donor. And I think all that Nicole's donor was told is that the transplant was for a female infant. One year following the transplant, if we wanted to, and the donor consented, we would be allowed to make contact with her.
There is abundant testimony in the scriptures that God is a "preparer"; He prepares the way for His will and His works to be accomplished. I believe that the Lord prepared Nicole's donor, Laura, a young woman from the mid-west, to be the instrument of Nicole's deliverance during her first battle with leukemia.
Of course, this required that Laura use her agency to be willing to make the sacrifice in Nicole's behalf, the same as our Savior, Jesus Christ, was willing to make His atoning sacrifice for all of us. And just like the Savior, it was actually a series of choices that Laura made throughout her life that made it possible for her to act when the moment of crisis was upon Nicole. Unlike the Savior, though, Laura did not know Nicole, yet she had compassion on this little stranger (whom she has yet to meet); she was like the Samaritan in the parable that Jesus gave in answer to the question, "who is my neighbor?" (see Luke 10:25-37). Through Laura, God fulfilled His word, and put good marrow into Nicole's bones.
 |
| March 15 2012; blood pressure cuffs are nice toys |
 |
| March 13, 2012; 30 hours into the third round of treatment |
Wednesday, September 17, 2014
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.
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.
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.
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.
*****
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."
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 |
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. |
 |
| 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. |
 |
| 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.
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.
Tuesday, September 16, 2014
Footprints
I have read and re-read a talk by Sister Mary Ellen Smoot the past few days. She starts her talk with "Some people and events come into our lives, leave footprints on our hearts, and we are never the same." (https://www.lds.org/ensign/2001/11/steadfast-and-immovable?lang=eng)
This sums up the past three years. My family is stronger and closer because of this journey with Nicole. We feel like we have been given a sifter to sift through what we value most. The things that have no value to us seem to just fall through the sifter, and what remains in the sifter is what we value most.
We have learned a lot about each other and each one of our children. We have learned a lot about friends. As hard as this journey may be we would never change what we have learned. Yes, James and I have changed. Our children have grown in ways that we could never have taught them. We cherish those "footprints on our hearts"; they have taught us about our King, Savior and Redeemer!
.jpg) |
| Look a pretzel! |
.jpg) |
| It's yummy! |
Nicole had clinic today (9-16-2014). It was a fairly quick visit; we were there for only 4.5 hours :) Her platelets were at 14 which is the best they have been in weeks. However, 14 still requires a platelet transfusion. They are also pleased with how well her GVHD is doing. They are hoping that getting her GVHD under control will help her platelets to improve on their own. They are feeling optimistic enough that they are on the right track that they want her to have her next appointment in a week. With that said, they are also being cautious and having a home health nurse come on Friday to draw labs to check her platelet counts.
We still don't know when they will allow us to go home. Nicole is 91 days post transplant today. The one thing I have learned is you can't plan on anything when it comes to going home. Just one day they will say, "you can go home."
Monday, September 15, 2014
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).
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.
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.
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.
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.
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.
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.
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.
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.
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. |
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 |
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 |
 |
| December 17; Nicole with her brother Jake |
 |
| December 21, 2011; Nicole and Santa in PICU |
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 |
 |
| Nicole with her mother on Christmas Eve |
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.
Subscribe to:
Posts (Atom)