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

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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

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.

March 22, 2012; a "selfie" with cousin Erin, before selfie was a word.

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.

April 23, 2012; 9 months old - immune compromised, but feeling good

 

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.


May 6, 2012; the security of holding a TV remote makes it easier to fall asleep

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.


May 8, 2012; it seems like this would be about the
last "good" day that Nicole would have for a long time.

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.

May 14 2012; second day of cranial radiation complete

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.

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.