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.