Nicole Kay Peterson: The Girl Who Lived

On October 27, 2014, Nicole Kay Peterson reached the summit of her mortal journey, took God's outstretched hand, and stood triumphant with Him over all her foes.  Born July 18, 2011, in just three years and three months, Nicole has touched many hearts with her wise eyes and her fierce determination to rise above her mortal afflictions.  Nicole was happy in every circumstance; even leukemia could not defeat her radiant spirit.  Nicole's life on earth, though brief, has brought unspeakable joy to her family, and has blessed the lives of all who know her.   Nicole is the girl who always had one foot on earth and one foot in Heaven; she is The Girl Who Lived.  We miss you, little princess, and look forward to the coming day when we shall embrace again.

 

Nicole was preceded in death by her grandparents, Kay Roberts Peterson, JoAnn Peterson, Robert S. Jones, Elisabeth Jones.  She is survived by her parents, James and Cathy, her older brother, Jake, and her five older sisters, Kersten, Rachel, Ana, Michelle, and Laura.

Funeral services will be held on Saturday, November 1, 2014, at 11:00 A.M. in the Hyrum LDS 14th ward church, 176 South 1300 East, Hyrum, Utah.  Friends may call at the Nelson Funeral Home, 162 East, 400 North, Logan, Utah, on Friday evening from 6-8 P.M. and again at the Hyrum LDS 14th ward church on Saturday morning from 9:30-10:30 A.M. Burial will be in the Manti, Utah City Cemetery at 4:00 P.M.

Striving For The Summit

As I indicated in my previous post, despite the important victory on Friday, Nicole still has a very hard battle ahead of her.  When they took Nicole off the ventilator on Friday, they originally put her on CPAP, but within about 12 hours, she needed more support, and they put her on BiPAP.  The BiPAP settings are about as high as they can go, so the only alternative from here would be back to the ventilator.  We have instructed doctors that we will not intubate her again.  We have also instructed them not to intervene in the event of cardiac arrest.  The doctors feel her heart is doing ok, but Nicole remains in a hard place, and the long battle is exhausting her.  The doctors don't have a good explanation for her current respiratory challenge.  They have been weaning the Milrinone (heart medicine), and plan to see how her heart looks again on Tuesday.  They are increasing the steroid which they had previously tapered since Friday, in hopes that her respiratory issues are GVHD related.

The truth is, today has been a very difficult day.  I have written about it, but Cathy and I cannot share it at this time - later perhaps, but not now; it is just too close, too raw right now.

We have travelled the path with Nicole long enough that we have learned that climbing out from the bottom of the low valley back up to the mountain peak is difficult, and the path takes many twists and turns along the way.  Sometimes much of the elevation that was just gained is immediately lost for a time as we press forward and follow the path to the summit.

Our journey through mortality is physically, emotionally, and spiritually taxing, and in order to reach the summit, we must stop from time to time to catch our breath, take nourishment, and drink deeply from the Fountain of Living Water.  The Lord also invites us to pause from time to time and look upon the beautiful vistas that surround us, and to take pleasure as we look back on the path we have travelled to get to where we are.  He also invites us to look forward with an eye of faith to the ever more expansive views that lay ahead of us as we continue our upward climb.  "...as it is written, Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him."  (1 Corinthians 2:9).  True joy and lasting happiness are gifts from God.  Happiness comes from within, not from external things.  Real happiness comes to us as we strive to "live by every word that proceedeth forth from the mouth of God" (see Matthew 4:4, Doctrine and Covenants 84:45), and in no other way.

Elder Richard G. Scott, a man who is familiar with affliction, familiar with loss, said, "Sadness, disappointment, and severe challenge are events in life, not life itself. I do not minimize how hard some of these events are. They can extend over a long period of time, but they should not be allowed to become the confining center of everything you do. The Lord inspired Lehi to declare the fundamental truth, 'Men are, that they might have joy.'”  (https://www.lds.org/general-conference/1996/04/finding-joy-in-life?lang=eng)

We have been strengthened often by the Spirit of God since Nicole was first diagnosed with leukemia; and there have many times when that Divine presence has been strongly felt in her hospital room.  However, last weekend, the Spirit of God rested so powerfully upon Nicole's hospital room that for a time it was transformed into a temple, and all who entered stood on sacred ground.  There are feelings in my heart that I cannot express - the words just aren't there.  I know that this is true of Cathy as well, even more so than for me, I think - who can plumb the depths of a mother's heart?  I pray that God will etch these feelings so deeply upon our hearts and minds that they will remain "present" with us, undimmed as time passes on.

I know that our Heavenly Father is mindful of Nicole, and that He loves her with a love far greater than I can understand.  That knowledge, borne of the Holy Ghost, sustains me through the present sorrow of our daughter's suffering.

 

Have Miracles Ceased? No!

Today (Friday 10/24) has been an amazingly good day.  If we can be thankful for hard things, things we wouldn't ask for, then we can certainly be thankful for things that we do ask for.  The many prayers which have been, and continue to be offered in Nicole's behalf are being answered.  The initial wait-and-see is over, and what we see gives us great cause to rejoice...

The first really good news today was the result of Nicole's heart echo.  On Monday, when they did the previous echo, the technician who performed it had never seen Nicole before.  After he finished, as he was leaving the room, he was fighting back tears, trying to conceal his emotions, and the cardiac doctor came in later and told us that based on the echo, Nicole's heart function was very poor, though it is difficult to determine the extent of damage from an echo.  Yesterday, the cardiac doctor indicated that they were seeing clear signs of improvement in Nicole's heart function.  But he then cautioned that the next heart echo might not show much improvement, but even so, he was happy with the way things were trending.  Today, the same echo technician from Monday was back.  After the echo today, he told us that although he wasn't allowed to interpret the results, he was smiling, and said it looked good.  The cardiac doctor came down a little later; he was all smiles, and said that the echo showed "marked improvement."  I feel the term "miracle" is an appropriate substitution here.  One of the things Nicole has always had going for her until this  past week is a strong heart; it appears that the Lord has intervened to strengthen and heal it.

Then later this morning the doctors were saying they would probably try to extubate Nicole within the next 24 to 36 hours.  They did a "trial" at noon where they simulated extubation, and Nicole did so well with it that they just let the simulation continue for quite a while.  They had put the ventilator into a mode where Nicole was doing her own breathing instead of the machine, but it provided positive pressure support, like a CPAP.  After about 90 minutes of this, they decided they were going to attempt to extubate her - things moved very fast today - so at 2:00 P.M., Nicole was extubated and put on a CPAP machine.  They'll probably try to switch her from the CPAP to a high-flow oxygen nasal cannula tomorrow.

From ventilator...

To CPAP.

Nicole is still wiped-out, but doing fine (though she's still not too sure about Kermit).  They have been slowly weaning the sedation since before the extubation and she is becoming more responsive, but she still hasn't opened her eyes much.  Late in the afternoon, the IV in her right hand was starting to fail, so they've removed it, and Nicole seems to be quite happy to have a hand back - she has been enjoying holding our hands and having the freedom to close her fingers.

The HHV-6 level in Nicole's blood is unchanged, but the last test was done on Wednesday, and the Foscarnet probably still needs some time for an impact to be detected.  However, her kidney function is actually improving a little, in spite of the Foscarnet, and we're expecting the next test to show a reduction in the HHV-6 level.

Nicole still has a steep hill to climb; we feel that the Lord will continue to sustain her and we will get her home again, but medically speaking, this battle is far from over - far from over.  We think the next scary hurdle is weaning the Milrinone that has been helping her heart, but today, we express gratitude to our Heavenly Father for the miracles that He has wrought, both by the hands of the medical staff at PCMC, and by His own power.

"Wherefore, my beloved brethren, have miracles ceased because Christ hath ascended into heaven, and hath sat down on the right hand of God, to claim of the Father his rights of mercy which he hath upon the children of men? ...Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men. ...has the day of miracles ceased?  Or have angels ceased to appear unto the children of men? Or has he withheld the power of the Holy Ghost from them? Or will he, so long as time shall last, or the earth shall stand, or there shall be one man upon the face thereof to be saved?  Behold I say unto you, Nay; for it is by faith that miracles are wrought; and it is by faith that angels appear and minister unto men..."  (Moroni 7:27, 29, 35-37).

Over the past three years, we have been blessed to become acquainted many great and noble spirits who have battled cancer, and God has brought many of those noble ones through the Veil into His bosom.  I know that those children, their families, and their communities have poured out their hearts unto God in mighty fasting and prayer, in great faith, just as we have, and I believe that like us, they have seen many miracles, but like us, their faith is in Jesus Christ, not in outcomes.  I testify that God is a God of miracles.  So long as His children exercise faith in Him, miracles shall never cease among the children of men, so long as the earth shall stand.

I Will Lead You Along - Thankful For All Things

Today (Thursday, 10/23), Nicole remains in critical but stable condition.  Her appearance is much improved compared to last weekend, and there are small but continued signs of progress.  There are still many challenges to overcome, but today it seemed like the doctors are pleased with the direction things are going, and seem cautiously optimistic that Nicole can survive her current struggle.  We pray that the Lord will continue to strengthen her, both body and spirit.

Since Nicole's intubation on Sunday, her respiratory function has steadily improved, and the doctors don't seem to be concerned about it right now.  There has even been some talk about taking her off the ventilator "soon," which we've learned could mean just about anything, but it is encouraging.  Her fevering has also subsided, and she is holding onto her platelets better.  She did get a transfusion today right before surgery as a precaution, even though they were at 30.  This evening, her platelets were at 176!

So far, Nicole's kidneys are tolerating the Foscarnet that they're using to fight the HHV-6; they've dialed-back other meds to help with the load on the kidneys.

They did another stress test on Nicole's heart; normal is 0 to 10, and Nicole's is currently 1300, which is obviously terrible, but considering that it was 5000 on Saturday night, the positive trend is definitely good.  Heart rate is still mostly in the 150s, while 120s would be ideal.  They plan to do a heart echo tomorrow and see how things look.

Nicole's blood pressure remains high, in the 120/90 range, and even higher after her surgery today.  Ideally, they'd like to see 90/55.  Yesterday they started giving her a medication that will dilate her blood vessels and thus lower blood pressure, and they're slowly increasing the dosage, but they are still very puzzled about why it is so high.

As I mentioned before, access for medicine has been a challenge because Nicole's veins have been so abused over the last three years, and the IVs they manage to place don't typically last too long.  Today, the Surgical Team felt like she was stable enough to handle surgery for a new Broviac (central) line placement, but she has had so many that these are now tricky to place also.  They did ultrasound before the surgery to look for the best possible option, and the surgery was successful - no complications.  This is Nicole's seventh central line.


A few hours before surgery.

Nicole was very awake for a little while prior to her surgery this afternoon, she managed to half-open both of her eyes several times, and shook her head to most of our questions, though she did want us to put a movie in, even though she can really only listen, not watch.  She has not wanted her Kermie anywhere near her since last Friday, which has been at least as hard on us as it has on poor Kermit, and she still doesn't want him (notwithstanding the pictures Kersten took with Nicole and Kermit together the last few days).  I think that Nicole would like very much for us to hold and snuggle her, and we would like nothing more than to do so, but it isn't possible as long as she is on the ventilator.  Being in this condition is hard on Nicole's spirit, and hard on her parent's spirits too.

I have been thinking of how blessed we have been as a family, how good God is, how good He has been to us.  So many of these blessings have been embedded in the challenges and afflictions that Nicole has endured these past three years, and we aren't always able to recognize them "in the moment."  Cathy has had similar thoughts, and reminded me of the following scripture: "Verily, verily, I say unto you, ye are little children, and ye have not as yet understood how great blessings the Father hath in his own hands and prepared for you; And ye cannot bear all things now; nevertheless, be of good cheer, for I will lead you along. The kingdom is yours and the blessings thereof are yours, and the riches of eternity are yours. And he who receiveth all things with thankfulness shall be made glorious; and the things of this earth shall be added unto him, even an hundred fold, yea, more." (Doctrine and Covenants 78:17-19).

We are to receive "all things" with thankfulness.  All things.  Even the hard things.  As hard as it has been to walk this journey with Nicole, I thank my Heavenly Father for allowing us to do so.  I wouldn't have wished this path for Nicole, but it is a sacred privilege to be able to walk it with her.  Our family is learning things that we could learn in no other way - this journey is changing us, shaping us.  I know that God prepares a way, prepares blessings for each one of His children here in mortality; He has certainly done so for the Peterson family, and He is leading us along, one step at a time.

Day of Rest

Today (Wednesday, 10/22) has been a mostly quiet day.  Nicole's respiratory function is improving, and they've been dialing down the settings on her ventilator.  They're tweaking meds as necessary, and doing everything they can to mitigate negative impact to the kidneys.  Heart rate was up in the 150s for most of the day, but has settled into the 130s this evening.  They're still worried about her blood pressure and don't understand why it is high; they spent a lot of time today searching with ultrasound to see if the could find a blood clot in her veins somewhere, but didn't find anything.  They're planning to surgically place a new central line tomorrow, and they're going to wait until Friday to do another Echo and EKG; hopefully the heart shows improvement from when they last did them on Monday.

Most of the time, Nicole is relaxed, but a few times each
day, she makes this scrunchy face that cuts me to the quick.

On Saturday and Sunday, the Veil was very thin in Nicole's room; I could feel the weight of eternity pressing-in, and I have no doubt that Nicole was seeing the normally unseen, though I could only sense it.  I have not been blessed with that type of gift, nor have I sought to try to cultivate and obtain that gift from God.  On Monday, I think this was largely unchanged, but we had a non-hospital distraction that required much of our attention that day.  Late that afternoon, I was sitting next to Nicole's bed, lights dimmed, holding one of her hands, and talking to her, since I knew she was conscious.  The music therapist came and asked if she could come in.  Nicole loves her; she came up to the other side of the bed with her guitar, playing softly, singing softly.  I don't know that an angel direct from the presence of God could have sounded more beautiful.  She first sang "Rainbow Connection," and then "Let It Go" from Frozen, and then "I See The Light" from Tangled, and then another song I didn't recognize, but she sang them all in a manner that I simply cannot describe; there was a healing, spiritual quality that I would never have imagined possible.  My broken spirit was healed, and I am certain that Nicole's spirit was too - it was an unforgettable experience for me..

Since Monday, though, eternity has slowly withdrawn and cloaked itself from my dull senses.  I have no doubt that angels are still attending Nicole, but the atmosphere in her room is much more "normal" than it was a few days ago.  For now, we continue to seek the Lord's guidance and wait patiently.

Another Ray of Sunshine

I haven't been willing to include pictures in the last few posts, but today I was thinking I need to get over it.  However, I see that my daughter, Kersten, already took care of that on the previous post.  Here are a few pictures taken by Kersten from a couple days ago, when she had still had the BiPAP:

Saturday, 10/18: Sitting on dad's lap, holding her
Kindle Fire.  Despite an IV in her right hand and
a board to keep that hand and fingers straight,
Nicole could still manipulate the touch-screen
with the tip of her fingers, but the BiPAP mask
really frustrated her because she couldn't see well.

Saturday, 10/18: Trying to get comfortable.

 

Sunday, 10/19:  Nicole spending a brief moment with her 2.5 year-old nephew,
Jace, right before the room was cleared for intubation preparations.

I need to make a quick correction; I learned yesterday (Monday) morning that they only used the paralytic to place the ventilator tube on Sunday - they're not keeping her on it like they did 2 years ago when she had pertussis, just sedation.  This is a good thing overall, but she has had so much sedation that she's built-up a significant tolerance, and before it's time for her next dose, she can start to squirm and move quite a bit if she decides to.  The problem is that the ventilator tube goes all the way down to her lungs, and it can damage them easily if she gets feisty.

One piece of good news today is that Nicole's heart rate has continued to improve; mostly 140s, and even a goodly amount of time in the 130s, which is wonderful.  The bad news is that her blood pressure has been on the rise, and that trend continued today, and so the doctors are very concerned about that.  Nicole is a puzzle, and sometimes it feels like we're playing Whack-A-Mole with her various vital signs.

Two days ago, on Sunday, tests were showing no sign of the blood virus (HHV-6) in Nicole's system.  This is the virus that originally put Nicole in the hospital almost three weeks ago.

Yesterday, the tests showed a significant presence of HHV-6 in Nicole's blood, but a cardiac doctor remarked that although they would address it, clearing that up probably wouldn't benefit Nicole's heart.

This afternoon (Tuesday), one of the cardiac doctors came in and said that some other tests were showing enzymes in Nicole's heart that were likely caused by the virus, and that this was likely responsible for Nicole's heart problems.  This is the ray of sunshine - the feeling right now is that the virus is actually the primary problem, so crushing it may go a long way toward Nicole's recovery.

But what fun would sunshine be without storm clouds to provide a contrast?  The drug they use to treat the virus is hard on the kidneys...but after a consultation with the doctors on pros and cons, and a brief family council, we indicated to them that we wanted them to proceed full ahead and go after the virus aggressively.  They will, of course, monitor kidney function, and see how things go.

Of course there's lots of other things going on, and Nicole is running her nurses ragged.  Of particular note is that one of her IV ports has stopped working, so they needed to place another one.  Nicole has had so many IV pokes, both recently, and over the last three years, that they are having a very difficult time locating a non-scarred vein that they can use.  They have resorted to using an ultrasound machine to try to locate something, and finally stuck an IV in her right thumb.  However, it's not working out, so as I'm typing this, the IV Team is working her over again (with ultrasound assist), trying to find a vein that will work.  These days, this often involves several failed attempted pokes.  If they cannot get IV access, they will have do something more invasive, which is not something that anyone wants to do to her in her present condition.

For the past three years, it seems like Nicole has always done most everything the hardest way possible, and it appears that we're not going to catch a break this time around either.

On the other hand, this stubborn little girl has demonstrated over and over again that she has an indomitable will; she never gives-in.  For example, numerous times over the past two days, when the sedation starts to wear-off, Nicole will use the core muscles of her abdomen to try to sit up in bed - we have to tell her she can't do that, and gently lower her back down onto the bed.  She is still strong, still fighting, and she's ready to walk right out the front door of the hospital.  This little girl continually demonstrates such reserves of courage and determination that I cannot help but shake my head in wonder at her.

So at least for now, the priority is to destroy the HHV-6 while not destroying Nicole's kidneys in the process, and we are petitioning the Lord to help this process.  I asked my older brother to come and act as voice as we administered a blessing to her.

As I mentioned on Saturday morning's blog, at that time, I felt that the Lord said that He would prolong Nicole's suffering, but that He would also strengthen her to get through it.  Nicole is surely suffering, but she is also being strengthened; the Lord is with her.  We are deeply grateful for the multitude of prayers being offered by so many good people, even strangers, who are exercising their faith in Nicole's behalf.  As I have quoted in an earlier post, 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).

We feel that God is saying to us at this time: "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks; Waiting patiently on the Lord, for your prayers 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." (Doctrine and Covenants 98:2).  Whatever happens, our family's faith is in Jesus Christ and is not dependent on outcomes.  (see https://www.lds.org/general-conference/2010/04/healing-the-sick?lang=eng).

Sunshine.

{written by Kersten, Nicole's favorite sister}

Today, I went to visit Nicole.

I found myself alone with her. My mom had left her phone playing some songs by Hilary Weeks. I turned it off and began to sing to her. After a few songs, I began to sing "You Are My Sunshine." 

The emotions that overcame me as I sang that silly little song caught me off guard, and as I finished it I prayed aloud. "Oh Heavenly Father, please don't take my sunshine away! I'm not ready to lose her!"

I totally made this graphic. As I cried my eyes out!

As today has gone on, I have received a loving answer to that prayer.

My sister's rays of light will always shine, whether or not she remains with us in this life. And the Lord would never completely take her away from us. No matter where my sweet sister is, her sunshine will always touch my life. 

I love you Nicole, my beautiful Sunshine!

Be Still, And Know That I Am God

Since Nicole was intubated early yesterday afternoon (Sunday, 10/19), things have mostly settled down into a state of wait-and-see.  Between the mechanical breathing, sedation, chill mat, and pain medicine, her heart rate has been mostly ranging between 150 to 170 beats-per-minute, which is certainly a better than what it has been, though not great.  It has even gotten down into the 130s for a period of time, which is very good, and her other vital signs have been mostly good/stable as well.  This is the outcome that was hoped for - which is simply to buy some time to see if something can still be done to help her.

The blood virus (HHV-6) that she had previously and had gotten cleared has shown up again, so they're treating for that.  However, getting rid of that in and of itself will not solve the problem.

The doctors are still investigating things, and it'll be another day or so before all results are in, but things aren't good; the truth is, the only way Nicole survives this is by God intervening to spare her life.

This morning as I was praying, a scripture which became a familiar friend in July 2012 came to mind: "Be still, and know that I am God" (Psalms 46:10), and then, "Therefore, let your hearts be comforted concerning [Nicole]; for all flesh is in mine hands; be still and know that I am God." (Doctrine and Covenants 101:16).  I wondered if this meant that the ultimate outcome would be the same as in 2012, or if I was reading too much into it, since these scriptures would apply equally well if the Lord takes her from mortality.  Then another scripture came to my mind, one that I came across purely by chance, back in January, before we knew Nicole had relapsed: "In those days was Hezekiah sick unto death. And Isaiah the prophet the son of Amoz came unto him, and said unto him, Thus saith the Lord, Set thine house in order: for thou shalt die, and not live. Then Hezekiah turned his face toward the wall, and prayed unto the Lord, And said, Remember now, O Lord, I beseech thee, how I have walked before thee in truth and with a perfect heart, and have done that which is good in thy sight. And Hezekiah wept sore. Then came the word of the Lord to Isaiah, saying, Go, and say to Hezekiah, Thus saith the Lord, the God of David thy father, I have heard thy prayer, I have seen thy tears: behold, I will add unto thy days fifteen years. And I will deliver thee and this city out of the hand of the king of Assyria: and I will defend this city." (Isaiah 38:1-6).

Nine months ago, through this scripture, the Spirit bore witness to my spirit again that we would have Nicole "for a time".  Neither Cathy nor I feel that Nicole will have a long, long life, but I felt that the Lord was promising me through this scripture that Nicole would be with us for a while.  As this scripture came to my mind again this morning, it seemed like God was saying, "James, be patient, and have faith."

As Cathy and I have talked and prayed today, we know that this time is different.  Neither of us feel the absolute assurance that Nicole's life will be preserved, as we have at times in the past.  Cathy said that she has felt the Lord tell her that Nicole will be made "alive in Christ".

We do not know what will happen with Nicole; the Lord seems to be purposefully leading us along one step at a time right now, leaving us to step into the darkness, relying on His guidance hour by hour.  As Cathy told me tonight, it is time to step out of the boat, onto the water, and trust wholly on the Lord, and let Him lead us where He may.  We both feel that before the week is done, the path we must take with Nicole will be revealed.


 

Precipice - And A Day of Miracles

Yesterday (Saturday, 10/18), it was as though we stood on the edge of a great precipice.  We looked over the edge trying to see what lay at the bottom, but it was completely obscured by fog.  Today (Sunday, 10/19), we had to make a choice, and just jump.  But today was also a day of fasting and prayer, and a day of miracles.  We are so grateful to each and every person who has been praying for Nicole.  Thank you.

I am tired, and this post seems very scattered to me, but it'll have to do.

Nicole had a comparatively quiet, restful night last night, and the CO2 level in her blood improved.  Unfortunately, nothing else did.  I'm not sure what this morning's EKG showed, but the chest x-ray showed a significant change for the worse - filling with fluid.

There are four different teams involved in Nicole's care:  Bone Marrow, Cardiac, Infectious Disease, and Intensive Care.  They're all working together, trying to understand what is happening to Nicole, trying to help her.  We also had the same nurse again today.  As I've mentioned before, there's a lot of things going on, but the heart failure is the pressing concern right now.  Throughout the morning, various members of the staff came in and spoke to us, giving updates and opinions.  It was made clear to us that later in the morning, all of the stake-holders would gather together and talk things over, and then come to us and discuss things, and ask us to make a decision.  As this went on, Cathy and I made our choice to go all-in and make a final attempt to preserve Nicole's life; which I'll get to shortly...

We had our immediate family with us again today, but at one point, I was completely alone in the room with Nicole for a few minutes.  She was awake and seemed responsive, so I leaned in close, and asked her a few questions.  These days, Nicole is most likely to respond "no" or shake her head to most questions, so I purposely phrased my questions such that she would need to respond in the affirmative in order for me to stay strong in my own resolve - Nicole is only three years old, and doesn't really understand what is happening to her, but Heaven has been close the past couple days, and I needed to know if she still had the fire in her, the will and the determination to fight; because if she didn't, then I knew in my heart that couldn't bear to put her through what was coming.  So I talked to her and carefully watched her eyes, strained to hear any audible response through her breath-mask, and to detect even a small shake or nod of her head.  Nicole still had the fire, and I told the Lord that Cathy and I were going to press forward, so if that wasn't right, then He had better let us know now.

I suppose that I am a little anti-social to begin with - I don't enjoy big social gatherings and events, though I do better one-on-one or in small groups.  And although I am truly, deeply grateful for the outpouring of support by family, friends, and even strangers, and am strengthened by others, when I am hurting deeply, I just want to be alone, want to be with my own thoughts, want to try to commune with my Heavenly Father.

However, I was very grateful when my younger brother and his wife came to visit us.  And also, earlier that morning, when a neighbor called and asked if I wanted him to come down and give me a blessing, I consented.  I knew that we were faced with impossible choices today, and needed all the help we could get.  I told him that if he was going to come, then he needed to come immediately; otherwise, there would be no need.  So, mid-morning, right before the consultation with the medical staff, I received a much-needed priesthood blessing, and then we administered a blessing to Nicole, and then finally to Cathy.  I had been strengthened again today, and reconfirmed the blessing my brother and I had given to her the day before.  Immediately following this, the room was cleared, and our immediate family came in for a few minutes to be with Nicole one final time, and then is was down to just Nicole, Cathy, and me.

There are three possible reasons that Nicole's lungs are filling with fluid:
  a.  Her lungs are bleeding, which would most likely be caused by Graft Versus Host Disease (GVHD).  This remains a possibility.  If this is true, then some measures could be taken that may, or may not, help put an end to the heart failure.
  b.  She has an as-yet undetected virus or infection.  This is still a possibility, but seems the least likely reason at this point.
  c.  The lung failure is incident to the heart failure; as the heart continues to struggle, other organs are affected, and may also begin to fail.  In this case, there is nothing more medically that can be done to keep Nicole alive, and the measures that are currently being taken are futile.

There are three options that Cathy and I had to choose from today:
  1.  Shy away from the two real choices, because they are so painful to contemplate, and just keep battling blindly, hoping to find a needle in a haystack before her heart gives out.
  2.  Send Nicole home, and make her as comfortable as possible until her heart stops.  End the struggle, end the madness, let her go home where she belongs, and enjoy her company briefly while she still has some life left in her.  If reason 'c' above is the truth, then this is the correct option.
  3.  Put Nicole on a ventilator (intubate her).  This would allow the doctors to be able to get samples of her lung tissue, and perhaps gain some insight into what is happening, and what might be done to help Nicole, if there is anything that can be done.  It would also likely help to relieve the distress on the heart, since a machine would be breathing for her.  It would also allow the doctors to take some other measures to try to help her heart, in at least a small degree.  However, it might also kill her during the procedure.  Nicole's body has endured so, so much, and her current weakened and fragile state make it a very risky choice, and even if she survives it, it may ultimately just be more trauma, more brutality, for nothing gained - there may be nothing really to do, nothing really to find, and she may die anyway.  And it isn't just the trauma of the procedure itself to consider, but also the semi-coma-induced state that follows.

We had the consultation with the medical team.  It was a very somber meeting, and was, in its own way, as sacred as when the priesthood blessings were given.  After some discussion, we indicated to them that we chose door number 3 - understanding that due to her terribly weakened state, there was a high probability that she would die during the procedure.  We talked about things that no parent should have to talk about, though so many do, especially in the childhood cancer world.  After the meeting, preparations began immediately, but it took a while to get things ready - to prepare for all possible, even probable, contingencies.

As the preparations were being made, Nicole started to struggle with breathing, even with the BiPAP.  Part of my mind registered concern (and Nicole's nurse told us several hours later that if they hadn't proceeded with the intubation, he felt that she wouldn't have lasted through the night).  However, I had a tremendous sense of peace; I felt certain that Nicole was going to get to, and go through the procedure, and that despite the cards being stacked against her, she would survive it.  At the same time, I also knew that if she died it my arms at that very moment, then I would mourn, I would be devastated, but I knew that it would be the will of the Lord, and I would accept it.

At about 1:00 P.M., it began.  They sedated her somewhat, but she was still awake.  As they were stretching her out and making the final preparations, she became a little anxious, afraid.  Cathy and I were allowed to each hold one of her hands and talk to her, comfort her, until the very last moment - then we had to step away...

Perhaps at some future time, I will record my thoughts, my feelings...but not today; just too much to express, and I am too tired to try to put it into words.

Today we witnessed a miracle - executed by mortal hands, guided by Heaven's power; the procedure was successful, and by 1:30 P.M., the immediate danger was over, and the staff went about the routine of getting Nicole situated and comfortable as possible.  She receives both sedation and paralytic.  The sedation is enough to help her be comfortable, and she will sleep more, but she is still often conscious, often aware of her surroundings.  However, due to the paralytic, she can hardly move a muscle, not even open her eyelids.  I have tried to imagine what that must be like - it can't even be explained to her what is happening -  she is conscious, aware, but unable to do much of anything.  She can shake her head, and wiggle a little.  She cannot communicate; in fact, with the tube, she cannot even cry audibly, and the paralytic suppresses most of the shudders she might otherwise make.  I have tried to imagine, but I cannot.  All I can do is weep when I think too much about it.  We talk to her from time to time.  I sing to her.  Cathy started reading "The Secret Garden" to her.  Time passes very slowly for us, and I am certain it is even worse for Nicole.  I played some of her favorite songs on my phone for her, and she wiggled her thighs like she was trying to dance.

They're doing all kinds of things, including putting her on a high-tech cooling pad to help reduce her body temperature due to the fevering.  Overall, as the day has passed by, it seems like her heart is definitely doing better.  Unfortunately, today's miracle, by itself, is insufficient; the next 48 to 72 hours will determine whether or not Nicole will eventually be able to return home to live.  Despite everything, Nicole's spirit and determination still seems strong, but the next couple days will be very hard.  For now, all we can do is continue to pray and wait patiently on the Lord to stretch forth His arm of deliverance.

The Veil has been very thin in Nicole's room for the past two days; and she has been seeing angels that the rest of us can perhaps only feel from time to time.  We have watched as Nicole has stretched-out with her hands to try to touch outstretched hands unseen by everyone but her.

The medical staff here at PCMC - how grateful we are to them.  How grateful we are to all who are praying and working for Nicole.  How grateful we are to our Father in Heaven for allowing us the privilege of being Nicole's parents.  And how grateful we are that He is with her.  I know that miracles have not ceased among the children of men.  "And now, I, Moroni, would speak somewhat concerning these things; I would show unto the world that faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith." (Ether 12:6).  I know that is by the faith of many people in calling down God's power into a little hospital room that Nicole is still alive today.  Miracles have not ceased, because faith in God has not ceased.

Crossroads - You Are Brave

On Thursday night, I stayed in Nicole's room in ICU because there were no extra sleep rooms available, and interruptions aside, the chair-turned-cot was very difficult to sleep on.  So last night (Friday), I wasn't in her room.  When she went down to ICU last night, she was doing ok, and they started her back on the Milrinone (heart medicine).  I was hoping that by morning, Nicole would be noticeably improved...

At 5 A.M. this morning (Saturday, 10/18), a nurse woke me and said Nicole had worsened through the night, and I was needed.  When I arrived in her room, it was obvious that Nicole was unhappy and uncomfortable, and as time passed, I started to get anxious.  It was clear the Milrinone wasn't working like it had previously, even after they'd increased the dosage during the night..  Nicole's heart was racing in the 180s, and occasionally breaking 190 beats-per-minute (120s is where it ought to be), and the nurse told me that the CO2 level in her blood was steadily increasing.  They had also switched her to high-flow oxygen, but it didn't seem to be helping the CO2.  Furthermore, she was still running a high temperature - something which the doctors had expected the steroid to knock-down. 

By 6 A.M., when one of the PICU doctors came in and filled-in details, I was already prepared for bad news, and it was bad.  They'd done another EKG and another x-ray right before I'd gotten there.  The EKG showed a heart problem, and the x-ray showed a lung problem, neither of which were surprising, given her state.  The doctor reiterated that Nicole wasn't responding to the heart medicine, and that her heart was failing  - yes, Nicole is suffering heart failure - and that they were considering options, with the main thing being sedation and intubation; maybe if they could get her body to relax some and have machine-assisted breathing, her heart would slow down and start working better.

The doctor didn't mince words.  Heart failure.  Intubation.  In my mind, I started reliving what happened to Nicole in July 2012 when she got pertussis - a blog I've started, but haven't been able to finish yet - and I became more afraid than I ever have been since Nicole's relapse.  Today has not been a good day; it ranks among the worst days of the journey so far, and definitely the worst day since her relapse.  Anyway, Cathy was already planning to come back down with our other girls this morning, but looking at Nicole, I sent Cathy a text and said she needed to come now - Nicole needed her mother.

Some time passed, and Nicole physically looked worse and worse.  The medical staff was in-and-out of the room, and after things settled a bit, I gave her a father's blessing, but didn't feel much guidance from the Spirit.  After that, I simply began to pray silently, pleading earnestly with Heavenly Father in Nicole's behalf.  As I looked at my little girl, pleading with Heavenly Father, a kind of anguish that I have not felt for a long time started tearing me up inside.  "Is this how it ends?  Wilt Thou take Nicole this time?"  No response.  "Wilt Thou not heal her?  No response.  Wilt Thou prolong her suffering?"  The heartbreaking answer, "I will."  Then, "Wilt thou then strengthen her to be able to endure this?"  "I will."

By 7:30 A.M. or so, I'd shed tears a few times, and was doing everything I could think of to help distract Nicole from her present suffering.  Singing to her helped for a while.  Then we looked at a copy of the Friend magazine, which kept her attention for a few minutes.  Then we watched a few YouTube videos on my phone - Kermit singing cover for "Let It Go" from Frozen; Owl City, "When Can I See You Again" from Wreck It Ralph.  I remembered she likes Hilary Weeks songs, even tries to sing along with some of them, so I searched and found someone had made a video featuring "Brave" (https://www.youtube.com/watch?v=TpJUFUpTzb4).  Nicole likes that song.  We listened to that one a few times and I shed some more tears.

A little while after that, I was sitting on the bed with Nicole, and she was laying listlessly on the bed next to me, and we were alone again. Suddenly, Nicole struggled to sit up; I was surprised by the sudden burst of energy and determination, but I put my hand on her back and helped her up.  Nicole sat perfectly calm, perfectly still, looking straight ahead. I pulled back a little, watching her closely for a few moments with a distinct feeling that something was happening with her.  Then the PICU doctor walked in, took one glance at her and also seemed to feel the strangeness of Nicole's posture and behavior.  She immediately said to me, "What's going on?  What is she doing?"  To which I replied, "I don't know, she just sat up a moment ago."  Again, I think the doctor sensed the same thing I felt; she quietly came around and knelt down on the floor by the side of the bed near me and started asking Nicole questions, but Nicole didn't even glance at her, just sat perfectly still, staring straight ahead.  prior to this, the medical staff had agitated her quite a bit, and when anyone spoke her and asked her a question, she would just shake her head and say no.  But not now.  "Nicole, where's your dad?" was one of the questions the doctor repeated several times, but even Nicole's eyes didn't shift, didn't glance at me or the doctor, she just sat calmly, completely oblivious to both of us.  This lasted for perhaps a minute or two, and then Nicole quietly turned and laid back down on the bed.

I didn't know exactly what it was that happened, but I knew that it was something very significant.  I believe that someone was communicating with Nicole through the veil, and that choices were being made, decisions were being made.  It was a sacred moment that is etched on my memory.  I felt that Nicole had figuratively just stood at a crossroads, weighed the options, and that she had made her choice.  And I was left to wonder what choice, what decision it was that had been made.

Shortly after that, at 8 A.M. or so, several of the staff came in, and explained that they believed that Nicole's heart was beating so fast that it wasn't able to fill-up properly, and one of the valves was leaking.  Her blood wasn't being circulated properly and more and more CO2 was being built up in her bloodstream.  They had decided that they were going to lightly sedate her, and put her on a BiPAP, which is similar to a CPAP machine used for sleep apnea, but it has a high pressure and a low pressure that it switches between, to encourage both good inhalation and good exhalation.  They hoped that this would take care of the CO2 problem, and hopefully have a positive influence on the heart function as well.  I think is was at this time that I was first asked if Cathy was coming, and if she would be here soon, but I got asked that question a few times, by a few different staff members, so perhaps the first occurrence was earlier, but it drove home the anxiety I was feeling that we were standing on a great precipice, and Cathy needed to get to the hospital as soon as possible.

In the meantime Nicole's appearance continued to worsen.  I was very anxious for Cathy to arrive before they did the sedation and BiPAP, and I was also very anxious about Nicole's condition.  Her skin had a greyish hue that reminded me how she looked in December 2011 when she was first Life-Flighted to PCMC.  Her mouth was partially open, but there was a layer of gummy...stuff...almost like a thin skin tissue that covered most of the opening, and she wouldn't let me try to wipe it away. She looked terrible, and my heart was breaking again.  What choice had been made?  Nicole had a lot of stuff hooked-up to her, but I managed to pick her up in my arms and cradle her on my shoulder. I just stood there and rocked her, wondering if she had decided that is was time to take the next step, and go on to the next life.

Cathy and our other girls arrived just after 9 A.M.; Nicole's attending nurse (one of the ones who was with us back at the very beginning, in 2011), had been stalling until Cathy got there, though he'd finally started the sedation.  Cathy took Nicole in her arms, and they proceeded to put the BiPAP mask on her.  Nicole was not happy about it, but mom being there helped a lot.  Soon after, our oldest daughter, Kersten, and her family arrived as well.  They only allow three people at a time (including parents) into the rooms in ICU, so we rotated in order for people to be able to see her.

My oldest brother and his wife arrived at the hospital around 10 A.M., as I was on the way out to the car to bring in a tote with some of Nicole's things.  I just sat in the car for 10 or 15 minutes.  I had a brief, good cry, and then started praying again.  I needed to know what God's will was for Nicole.  After a few minutes cutting through my emotions, I felt the Spirit confirm my earlier feeling that Nicole was in for yet another hard trial, but God would strengthen her and spare her life.  I went back inside, and my brother assisted me in administering a blessing to my little girl.  The anxiety I had felt previously that morning was replaced with peace.

The sedation Nicole was given was light, and despite her exhaustion, she was still uncomfortable, and didn't settle in and sleep, but after a couple hours, she started to look better.  The day passed without incident; Cathy's family came to visit, and later on, a few of our neighbors from Hyrum.  By the end of the day, Nicole's CO2 level had improved somewhat, and she was alert and looking much better than she had first thing in the morning.  Unfortunately, however, her heart has not improved, and her kidney function has worsened.

I know that God lives.  I am grateful for the Gospel of Jesus Christ, and for the power and the peace that springs from His atoning sacrifice.  I know that Nicole has chosen to stay with us here in mortality for the time being, and that God will honor her choice; her life is in His hands, and He will preserve her.  I know that her days are known unto God, and her years shall not be numbered less.  I know that our Savior is the Only Begotten Son of the Father in the flesh, and that through His sacrifice, we shall all be resurrected, and brought back into the presence of God.  I know that He is mindful of each of His children, and that He hears and answers our prayers.  I know that Christ has taken upon Him not only our sins and our transgressions, but also our pains, our afflictions, and our sicknesses.  I know that He has suffered according to the flesh, that He may know, according to the flesh, how to succor each of us in our infirmities.  I know that the Lord God truly does visit His people in their afflictions.

And this is not all.  Do ye not suppose that I know of these thing myself?  Behold, I testify unto you that I do know that these things whereof I have spoken are true.  And how do ye suppose that I know of their surety?  Behold, I say unto you that they are made known unto me by the Holy Spirit of God.  And this is the testimony which is in me.  In the name of Jesus Christ, Amen.

Heart Failure

I have been trying to write about today's events, but I haven't been able to get through all the details and emotions yet - still working on it.  But before this day ends, I need to write that chemotherapy has weakened Nicole's heart, and the recent challenges that she has been enduring have caused her to suffer heart failure.

This morning, she was critically ill.  The amazing staff at PCMC has managed to stabilize her somewhat, but if her heart continues as it is, Nicole will die from heart failure.  A stress test that was just completed that ranks a normal heart in the range of 0 to 10 ranks the stress on Nicole's heart at 5000.  The doctors don't have many options left to try, and the ones that are left I do not wish to contemplate, and may be fatal to even attempt.  Her heart is currently the biggest problem, but not the only one.

As in times past, Nicole's life is now in God's hands.  I do feel that He will spare her life again, but only through much affliction, some of which she has already endured today.  I do not know the meaning of all things, but I know that God loves His children.  I know that God loves Nicole.  I know that He will strengthen her and eventually, she will come home to us again.  In the name of Jesus Christ, Amen.

There and Back Again (Again!)

As Cathy indicated in yesterday's post, we still don't have answers, and in a nutshell, Nicole is still miserable - today has been a busy, roller-coaster-ride kind of day; she got out of ICU for 16 hours, but now she's back.  Here are some highlights:

The Good:

• Nicole was transferred from PICU back to ICS at 3 A.M. this morning (10/17).  However, the early A.M. transfer was due to Nicole swapping places with another ICS patient who needed to go to PICU, which makes me sad.
• Still no signs of any type of infections or viruses; the medicines seem to have knocked-out everything, and nothing new is showing-up.
• They've done an Echo, and EKG, and a chest x-ray today, and everything looked good.
• She perked-up a little for a couple hours in the early afternoon.

The Not So Good:

• Still having (green) diarrhea.
• Still fevering.  Tylenol helps.
• Elevated heart rate, frequently running in the high 160s to low 170s, and even spiking to the 180s, and it doesn't really seem to track with fever or discomfort.  Morphine helps the discomfort, but doesn't seem to impact heart rate.  Basically, since they took her off the heart medicine yesterday afternoon, her heart rate has climbed back up to what it was before they put her on it, although diuretics to help keep fluid off her seem to help a little.
• Nauseous; she has been very gaggy despite still being on IV nutrition (though she still gets a few meds via her feeding tube).  Zofran helps - it seems to have staved-off vomiting.
• Got platelets again today.  They checked her platelet count a couple hours after the infusion, and they were at 122.
• At 7:00 P.M, Nicole was transferred back down to ICU; cardiac function is still the biggest concern.  It was a see-saw throughout the day on whether she needed to go back down, particularly since all of the tests they ran didn't turn-up anything, but they've decided to put her back on the heart medicine that she's been receiving this week (up until yesterday afternoon).
• More pokes in ICU.

The Current Plan:

• Nicole is now back on steroids.  Despite the CT scan not really showing anything, GVHD can be difficult to 'prove', and there's not much else that could be causing most of these problems now (the other main candidate being transplant failure/leukemia relapse).  Hopefully we see significant improvement over the next few days as the steroid (in conjunction with the anti-rejection med she's already receiving) have some time to take effect.  They were going to scope her gut today, but called it off because she's not doing well.
• However, the steroids will not help with the cardiac problem - that's a separate game we're playing.

Trivia:

• There are 24 rooms in ICS, and Nicole has spent time in nearly all of them, but today she was in a room we've never had before.  I think now there is just one room that she's still never stayed in - maybe we'll have to put in a special request for that one...

Sad eyes today.

I love these words from President George Q. Cannon:
No matter how serious the trial, how deep the distress, how great the affliction, [God] will never desert us. He never has, and He never will. He cannot do it. It is not His character [to do so]. He is an unchangeable being; the same yesterday, the same today, and He will be the same throughout the eternal ages to come. We have found that God. We have made Him our friend, by obeying His Gospel; and He will stand by us. We may pass through the fiery furnace; we may pass through deep waters; but we shall not be consumed nor overwhelmed. We shall emerge from all these trials and difficulties the better and purer for them, if we only trust in our God and keep His commandments."  [“Freedom of the Saints,” in Collected Discourses, comp. and ed. Brian H. Stuy, 5 vols. (Burbank, California: B.H.S. Publishing, 1987–92), 2:185]  (http://speeches.byu.edu/?act=viewitem&id=734)

Nicole's journey has been long, and still continues, and many people have reached out to support us.  From friends we have known our entire lives, to friends we met today and everyone in-between. We are grateful for family and friends.  Most of all, we are grateful to God; through this entire journey, He has never deserted us. 

Still in PICU

 

Nicole is still in PICU.  We are still chasing fevers.  We do not know why she is still getting fevers.  Her labs for the line infections all come back negative.  Her virus has also cleared up.  There is nothing obvious for her to be having fevers.  Late this afternoon (10-16-14) they took her off the iv heart medication and put her on oral medication.  The heart is the obvious reason Nicole is still in PICU.  We will see how she does through the night, and maybe tomorrow Nicole will go back up to ICS unit.  However, they have been saying that maybe tomorrow she will be up on the ICS unit for the past two days and she is still in PICU.  During this journey I have learned nothing is ever solid until it is done. 

Nicole also had a CT scan to see if there was any GVHD going on they could see.  Unfortunately, the CT scan wasn't too revealing.  The bone marrow team would like for Nicole to have a scope of her gut tomorrow for more information. 

At this point we have no solid answers to what is really going on.  The bone marrow team is doing all they can to find answers.  I have a feeling that they are perplexed on what is going on with Nicole.  Today I have been reading a talk by Elder Dieter F. Uchtdorf  "Continue in Patience".  In the talk there is a section on waiting "the Lords way and time".  Elder Uchtdorf teaches:  "The children of Israel waited 40 years in the wilderness before they could enter the promised land. Jacob waited 7 long years for Rachel. The Jews waited 70 years in Babylon before they could return to rebuild the temple. The Nephites waited for a sign of Christ’s birth, even knowing that if the sign did not come, they would perish. Joseph Smith’s trials in Liberty Jail caused even the prophet of God to wonder, “How long?”   ^{(D&C 121:2)}  

In each case, Heavenly Father had a purpose in requiring that His children wait.

Every one of us is called to wait in our own way. We wait for answers to prayers. We wait for things which at the time may appear so right and so good to us that we can’t possibly imagine why Heavenly Father would delay the answer."  He shares what President Young taught when he couldn't comprehend something he would pray:  “Give me patience to wait until I can understand it for myself.” (https://www.lds.org/general-conference/2010/04/continue-in-patience?lang=eng#5-PD50021388_000_025)

 

I would love for all the answers to be known now.  But for now we wait patiently upon the Lord.  I know that He is in charge.  He is the details of our lives.  He is guiding and directing the Bone Marrow Team.  I know this to be true!

Still struggling to get Nicole to smile.  She still refuses to look at the camera.
I am sure she is thinking "mom I feel like garbage why are you documenting this?"

Kermie is getting some tough competition in PICU with Bingo prizes,
but when it came to needing support she still wants her BBF Kermie. 

Getting a little bit of life and playing with stickers.  Still no smiles though.

Trying to keep her fever down with ice packs.

 

Matters of the Heart

Nicole is still in PICU.  They have been slowly been weaning her high flow oxygen.  She is happy to no longer have to wear the CPAP mask :)  They are not really sure what is going on.  Her lungs look liked she had Pneumonia yesterday.  However, today they are saying her lungs issues could be related to her heart.  When they did her echo yesterday they found her heart is working harder then it needs to be.  They put her on a heart medicine and that is working.  The cardiology doctor wants to do some more testing before they give us more solid answers.  At this point they feel that the chemotherapy she has received  has weakened her heart.  Then adding in the virus and infections over the past few weeks has brought the problem to light.  They are not sure of the path that they want to travel, and what effects this will have long term.  We need to do more testing.

Today been a pretty quiet day for Nicole.  She did get a visit from music therapy.  Nicole loves them.  Music calms Nicole and lifts her spirits.  I am always grateful when I see them come to Nicole's door.  They can usually bring a smile to Nicole, however, today they were only able to calm her spirit with music.  When she saw her today she just started to cry.  It was almost like she was telling the therapist how she was really feeling.  The therapist just keep playing her guitar and singing Rainbow Connection (which her dad often sings to her).  Nicole's tears changed from being mad to just letting the tears roll down her face.  I felt like she was just saying "I am tired and weary.  Can it all just stop." I am so grateful for the little things the staff and volunteers do for Nicole and our family.

Today my thoughts have turned to two talks; the first one is by Elder Wirthlin, "Press On":
"I testify that in the eternities, as we look back upon our little span of existence here on this earth, we will lift our voices and rejoice that, in spite of the difficulties we encountered, we had the wisdom, the faith, and the courage to endure and press on."  (https://www.lds.org/ensign/2004/11/press-on?lang=eng)  The Lord expects us to press on.  That leads me to my second talk by Elder Oaks, "Faith in the Lord Jesus Christ"  "Here we see the Savior’s absolute faith and trust in the Father. “Nevertheless,” he said, “not my will, but thine be done.” The Father’s answer was to deny the plea of his Only Begotten Son. The Atonement had to be worked out by that lamb without blemish. But though the Son’s request was denied, his prayer was answered. The scripture records: “And there appeared an angel unto him from heaven, strengthening him” (JST, Luke 22:43)." (https://www.lds.org/general-conference/1994/04/faith-in-the-lord-jesus-christ?lang=eng)  The Lord does expect us to press on, to do His will, but He will strengthen us.  In Moroni 7:33 we are taught:  "And Christ hath said: If ye will have faith in me ye shall have power to do whatsoever thing is expedient in me."

Still not super happy.  But No CPAP mask:)

 

Nicole would let me take a picture of her new monkey hugging Kermie but she refused to look at the camera.

 

PICU

Nicole has been miserable!!  It's been hard to find a smile.  They did another chest x-ray and it looks like she has pneumonia.  They are not sure what type she has, and they will probably run some more tests tomorrow.  There is a specific kind of pneumonia that goes with GVHD and they just want to be sure how to battle what is going on.  They also did an echo and her heart is working super hard.  I really do not understand all they were talking about it.  One of the concerns with the heart is all the chemo she has had.  They need to pull some fluid off her so they can understand more.  They felt today that she needed more support to help her battle all that is going on, so they sent her ICU this morning.  The bone marrow team admits that Nicole has them perplexed.   If Nicole is doing better tomorrow then they will do a CT scan. 

When David O. McKay was a young boy he learned the comfort of prayer:  “One night while his father was gone, David … heard noises around the house and felt sure there were burglars. He knew his mother would be frightened too if she heard [the noises], and he hoped that she would not. As he lay there wide awake, … he decided to do what his parents had taught him to do—pray. He had always said his prayers kneeling at his bedside, so he felt that now too he must get out of bed and kneel down to pray. Climbing out of bed was a terrible test; it took all his strength and willpower because he was so frightened. But he did it!

“As he knelt down by the side of the bed, he prayed earnestly and with real faith. Then, just as clearly as one person speaks aloud to another, he heard a voice say to him, ‘Don’t be afraid. Nothing will hurt you.’ David then climbed back into bed and fell fast asleep” (Marie F. Felt, “David: A Boy of Promise,” Instructor, Sept. 1969, p. 330).   (https://www.lds.org/manual/primary-2/lesson-8?lang=eng) I know we will also hear "noises" that frighten us from time to time.  Like President McKay, when we sincerely pray, we too feel the comfort we need from a loving Father in Heaven.

Nicole before we went to PICU.

 

Nicole with a CPAP machine.

Just hanging out

We have had a busy couple days here.  Nicole's line is now out while her body fights the infection.  Actually, she has three different infections, and is getting four different antibiotics.  Yesterday (10-10-14) they placed a PICC line in her arm so they don't have to keep poking her with peripheral IV's.  She has had some pretty high fevers that we have been chasing away with Tylenol.  She has been grumpy and not really wanting people to talk to her.

She is still trying to help with her care though.  Today they needed to unclog her PICC line.  When the nurse came in with the clave change kit, Nicole lifted up her nightgown to give her one of her lines (which has been removed).  Nicole was confused as to where her line was.  She kept rubbing her chest where her central line used to be. We showed her that is was now in her arm.  She seemed confused by it all, but she rolled with it.  Nicole is now resting peacefully.  Right now is the most peaceful rest she has had in days. 

Being here at Primaries is like being home. The staff here is like family to me.  Today one of the nurses who no longer works in ICS came up to visit his wife (who is working in ICS now).  Visiting with him and his wife, and seeing their adorable children lifted my spirits.  The nurses here in the ICS unit not only care for the child but the entire family.  We spend so much time together, how can they not be like family?

Today, Nicole's nurse and I talked a little about the angels we feel here in the unit strengthening the children who are fighting cancer.  My mind always turns to the children I know who have gone home to our Father in Heaven.  I know that they are here, encircling the children who are still fighting here in mortality.  My mind turned to one of my favorite scriptures in 3 Nephi 17:24 "And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; and they came down and encircled those little ones about, and they were encircled about with fire; and the angels did minister unto them."

My mind also turned to a quote by Elder Ballard.  I feel that the nurses here also encircle the children with our Savior's love.  "Clearly, those of us who have been entrusted with precious children have been given a sacred, noble stewardship, for we are the ones God has appointed to encircle today’s children with love and the fire of faith and an understanding of who they are."
(https://www.lds.org/ensign/1994/04/great-shall-be-the-peace-of-thy-children?lang=eng).

The nurses have their own struggles and challenges in their personal lives but they leave them at the door at Primaries.  They come to work to strengthen each child, each family member.  They bring a smile to child who is having rough day, they cry with a child or a parent who needs someone to just listen to them.  The staff truly does "encircle the children".

Sneaked in a picture when Nicole wasn't looking.

 

Nicole is still camera shy.

 

Resting peacefully.