Be not weary

Nicole had clinic today.  She is now 42 days post transplant.  Things are going according to the textbook.  Her blood counts are holding their own.  They are not perfect but they are holding steady.  We are going to start to taper down her anti-rejection medication.  This is when it gets a little scary for us.  Hopefully, she will not get any GVHD.  We will need to watch closely for signs of rejection.  In two weeks Nicole will be getting four weeks of lp or chemo in her spine (it will all be out-patient). They want to be sure that they get all of her leukemic cells.  This is protocol with patience who relapse with leukemia in the central nervous system.  Once Leukemia been in the brain it's hard to be sure they got it all.  The leukemic cells like to hide in the brain.

It's been a long few weeks.  Nicole spends most of her morning throwing up (It is just part of the healing process for her).  Most morning we just start the day throwing up.  Some mornings she throws up her feeding tube.  I tell most people that she throws up once a day.  But in truth she throws up for at least an hour or two every morning.  We spend most morning sitting in our room together just waiting for this period of the day to be over.  Then when she is finally done we get cleaned up, put her feeding tube back in, slowly start giving her meds she needs in the morning (it takes about an hour to just give her medication).  We start laundry and cleaning up from the morning. She then goes about her day if nothing happened and I am ready for a nap:)

I have had so many thought go through my mind this week.  I wish I could truly express the feelings of my heart.  I don't know if people really want to hear.  In the pass when I have shared feeling or lessons I have learned with people they have been offended and not truly listened to how I felt or what I was trying to say.  They have been quick to judge.  When you have walked down a road when you are fighting to save your child life you change, you see things differently.  The gospel takes on new meaning.  One thing I love about the scriptures is that each time you read a verse you learn something new.  The spirit is teaching you what you need to learn right now.  This week the scripture that keeps coming in my mind is Doctrine and Covenants 64:33 "Wherefore, be not weary in well-doing, for ye are laying the foundation of a great work. And out of small things proceedeth that which is great."  Each day as I get tired of washing sheets. I think "be not weary in well-doing"  Or each time someone does a small act of service. I think "of small things proceedeth that which is great".  Each time this scripture comes to my mind I feel my savior love encircling me, to strengthen me to continue with the day to day task of helping Nicole heal.  How grateful I am for the strength of the scriptures and the words of the modern day prophets.   

Michelle and Nicole hanging out

Nicole at clinic today

Lead, Kindly Light

Nicole is 36 days post transplant:)  Things are going well.  Her blood counts went down this week but not enough to cause concern.  We will see what next week labs say.  They are slowly increasing her feeds, she is now up to 2 cups a day.  Hopefully in a few weeks they can stop her IV nutrition. She won't eat anything by mouth, yet.  She still has a long road to eating.  She will start speech therapy this week to help with her oral aversion.

She stills throws up every morning (we did have one glorious day where she didn't).  She's also had a hard time sleeping.  Last night was another rough one for us.  As I sat in the rocking chair crying with her.  I was praying, telling Heavenly Father how hard this was and all the challenges I felt.  How grateful I am for a loving Heavenly Father who lets me be mad, hurt and frustrated.  He wraps His arms around me to continue to strengthen me. He brings mostly Primary Songs and Hymns to my mind to bring me comfort.  The past few nights He has brought the words to Lead, Kindly Light.  I am not super familiar with this song.  The line " The night is dark, and I am far from home" keeps coming into my mind.  I went to lds.org to look up the words.

1. Lead, kindly Light, amid th'encircling gloom;
   Lead thou me on!
   The night is dark, and I am far from home;
   Lead thou me on!
   Keep thou my feet; I do not ask to see
   The distant scene--one step enough for me.(Hymn 97)

I then found this story by President Monson:

"When I reflect on the race of life, I remember another type of race, even from childhood days. My friends and I would take pocketknives in hand and, from the soft wood of a willow tree, fashion small toy boats. With a triangular-shaped cotton sail in place, each would launch his crude craft in the race down the relatively turbulent waters of Utah’s Provo River. We would run along the river’s bank and watch the tiny vessels sometimes bobbing violently in the swift current and at other times sailing serenely as the water deepened.

During a particular race we noted that one boat led all the rest toward the appointed finish line. Suddenly, the current carried it too close to a large whirlpool, and the boat heaved to its side and capsized. Around and around it was carried, unable to make its way back into the main current. At last it came to an uneasy rest amid the flotsam and jetsam that surrounded it, held fast by the tentacles of the grasping green moss.

The toy boats of childhood had no keel for stability, no rudder to provide direction, and no source of power. Inevitably, their destination was downstream—the path of least resistance.

Unlike toy boats, we have been provided divine attributes to guide our journey. We enter mortality not to float with the moving currents of life but with the power to think, to reason, and to achieve.

Our Heavenly Father did not launch us on our eternal voyage without providing the means whereby we could receive from Him guidance to ensure our safe return. I speak of prayer. I speak too of the whisperings from that still, small voice; and I do not overlook the holy scriptures, which contain the word of the Lord and the words of the prophets—provided to us to help us successfully cross the finish line." (https://www.lds.org/ensign/2012/05/the-race-of-life?lang=eng)

It feels like Nicole still has a lot left on this marathon course we are on, but "one step is enough for me" as He leads me along.

Cherish every moment!!

Laura and Nicole watching "Land Before Time"

Michelle and Nicole coloring on Connie's front door



Ana and Nicole playing with rubber ducks



Rachel and Nicole coloring

Nicole 3rd Birthday

Nicole turned three yesterday (July 18).  She has had an amazing three years.  Filled with a lot of challenges.  Most know that when Nicole was 4 months old she was life flight to Primary Children diagnosed with biphenotypic leukemia (or AML and ALL leukemia).  Nicole had her first bone marrow transplant when she was 10 months old (May 2012).  Nicole was cancer free until February  2014 when she relapsed with extramedullary ALL.  In June she received her second transplant, her dad was the donor this time.  We are hanging in Salt Lake for the 100 days post transplant then we will be able to go home to Hyrum. 

We have been truly blessed with many miracles over the past  three years.   We have learned what is of most value.  President Monson taught:  "I believe that among the greatest lessons we are to learn in this short sojourn upon the earth are lessons that help us distinguish between what is important and what is not. I plead with you not to let those most important things pass you by as you plan for that illusive and nonexistent future when you will have time to do all that you want to do. Instead, find joy in the journey—now." He also quoted the Music Man in the same talk (anyone who knows me know that I LOVE to watch old movies) “You pile up enough tomorrows, and you’ll find you’ve collected a lot of empty yesterdays.”  https://www.lds.org/ensign/2008/11/finding-joy-in-the-journey?lang=eng

One of the joy of the journey are the people I meet.  This sweet picture was drawn by a sweet teenager daughter of a friend.  She lost her younger brother to neuroblastoma and loves to brighten other who are fighting the battle of cancer.  She drew this Nicole birthday!!

Nicole Kermit balloon:)

Nicole had a great time today!! 

I don't know how I managed to find a cabbage patch doll named Erin (after her all time favorite person:))

I wish I could express all my feeling about today!!  Nicole truly is a miracle!!  

Nicole is 100% James

Nicole is getting stronger every day.  This journey is so different then her first bone marrow transplant.  With her first transplant we spent 95 days after the transplant at PCMC with about 1/3 of those days in PICU.  The big drug Nicole had with her first transplant was called cyclosporine.  Cyclosporine doesn't play nice, meaning Nicole was on more drugs to help with blood pressure and her kidneys.  Nicole came home with 18 differnt medication plus IV fluids and feeds.  It was super intense with the first tranpslant.  With a haplo transplant they don't need to use cyclosporine.  Than means Nicole is only on 8 medication with 2 of those being anti-nausea meds plus IV nutrition, one IV anti-fugus and feeds.  It is a world of difference to mange that level of meds. With her first transplant Nicole needed to stay away from crowds for about a year.  With a haplo transplant she will need to be away from crowds for 18 months.  Just another reminder that you can not compare two journey's the Lord customizes the journey for what you need at the time. 

This week we got the result back on Nicole chimerism test. (The test tells us how much of Nicole cell population is Nicole, her first donor and James)  The test came back 100% James!!  That is just what we wanted to hear.  Nicole is also holding her own with blood counts which is another great progress forward. Hopefully Nicole won't need any more blood transfusions.  Nicole still has a long road a head of her.  We still about 75 days before we can all be home together in Hyrum.  (Yes, I am counting) plus 15 more months of building her immunity back.

I've been thinking a lot about sacrifice since we came home from Primaries.  People have sacrifice so much of their time, talents and resources to help up over the past two and half years.  President Snow taught: … "There is a self sacrifice to be made for the interests of those with whom we are associated. We see this in the Savior, and in brother Joseph, and we see it in our President [Brigham Young]. Jesus, brother Joseph, and brother Brigham have always been willing to sacrifice all they possess for the good of the people; that is what gives brother Brigham power with God and power with the people, it is the self-sacrificing feeling that he is all the time exhibiting. It is so with others; just in proportion as they are willing to sacrifice for others, so they get God in them, and the blessings of the eternal worlds are upon them, and they are the ones that will secure not only the rights of this world but will secure the blessings of eternity. Just in proportion as you … sacrifice one for another, just in that proportion you will advance in the things of God. Now if you want to get heaven within you and to get into heaven you want to pursue that course that angels do who are in heaven. If you want to know how you are to increase, I will tell you, it is by getting godliness within you." (https://www.lds.org/manual/teachings-of-presidents-of-the-church-lorenzo-snow/chapter-22-doing-good-to-others?)

Sister Carol Thomas quoted President Hinckley definition of sacrifice:  "President Gordon B. Hinckley defined sacrifice so beautifully when he said: “Without sacrifice there is no true worship of God. … ‘The Father gave his Son, and the Son gave his life,’ and we do not worship unless we give—give of our substance, … our time, … strength, … talent, … faith, … [and] testimonies” (Teachings of Gordon B. Hinckley [1997], 565)." (https://www.lds.org/general-conference/2001/04/sacrifice-an-eternal-investment?)  

Our family has experienced many personal and touching acts of sacrifice for our family that we won't be able to "re-pay".  I love how President Hinckley added time, strength, faith and testimonies to the definition of sacrifice.  How grateful we are people who shared not only of their substance but have also given of their hearts. What means the most to us is when someone feels a prompting and acts.  We pray that they will feel the "blessing of eternity" in their lives.

Long day at clinic

We love the primary kids in Hyrum. Thanks for brightening our day!



Enjoying motherhood

Nicole has been out of the hospital now for a few days.  She is doing great!  She's been happy and is loving having the freedom of space.  Being able to get down and walk around the house is helping her to get stronger.  It is so fun to hear her laugh and giggle as she plays.  She is only throwing up once or twice a day.  Her diarrhea is slowing down.  She does have an awful rash on her bottom that won't clear up.  The doctors try different creams but none of them are working. She is still on TPN and lipids  (IV nutrition) because she isn't tolerating feeds too well yet.  Getting her to eat will be a slow process.

I have always enjoyed being a mom and listening to my kids play.  I have loved little people conventions in my living room and listening to the creativity of play.  But listening to Nicole play brings such different feelings.  I have always tried to enjoy my children while they were little because I knew that I only had them for a short time in my home.  Now each day with Nicole reminds me that being a mom is a gift for our Heavenly Father.  Each day you have with your child is a gift.  I am grateful that I have spent time playing with each of my children.  With Nicole being in isolation for most of her life I haven't left her too often.  It's mostly just been me and Nicole.  We have had to find ways to entertain ourselves that don't include going to the park for play dates or roaming the stores to "kill time".  How grateful I am that my Heavenly Father has given me this gift to spend time playing with Nicole. 

Elder Ballard quoted "Author Anna Quindlen reminds us not to rush past the fleeting moments. She said: “The biggest mistake I made [as a parent] is the one that most of us make. … I did not live in the moment enough. This is particularly clear now that the moment is gone, captured only in photographs. There is one picture of [my three children] sitting in the grass on a quilt in the shadow of the swing set on a summer day, ages six, four, and one. And I wish I could remember what we ate, and what we talked about, and how they sounded, and how they looked when they slept that night. I wish I had not been in such a hurry to get on to the next thing: dinner, bath, book, bed. I wish I had treasured the doing a little more and the getting it done a little less” (Loud and Clear [2004], 10–11)." (https://www.lds.org/general-conference/2008/04/daughters-of-god?)

 

Pictures of Nicole getting ready to go bowling:)

Now watch her go!!

Kermit has competition tonight.  Nicole loves my kindle fire:)

Pictures of Nicole leaving PCMC:)

Nicole Last vitals for this visit:)



Nicole getting ready to leave her room

Nicole getting ready to ring the bell:)

 

 

 The staff getting ready to sing to her:)

 

Nicole getting ready to ring the bell:)

 

 Nicole ringing the bell.  When you ring the bell it means you are cancer free!!

 

 Nicole saying good bye to all her friends at primaries

 

 

Moroni 7:29 And because he hath done this, my beloved brethren, have miracles ceased? Behold I say unto you, Nay; neither have angels ceased to minister unto the children of men.

 

The staff at primaries have been our angels.  How we love them and miss them. 

 

 

Nicole coming to her aunt Connie's



Mosaic pattern

Nicole been doing awesome!!!  She has been happy and playful again.  It is always a struggle for Nicole to start with her feeds and for her meds to go oral.  She does throw up often.  She is also having a lot of stool.  They are doing some stool testing to be sure she doesn't have an infection of some kind.  However, the doctors feel it is just her gut getting use to be used again.  Just like any muscle when it hasn't been used it needs to be re-trained.  Even with these small challenges we will probably be able to leave PCMC and go to my sisters for the remainder of her 100 or so days here in Salt Lake tomorrow (July 5).  They want her to be close because if she gets any kind of fever or GVHD then they want us to be able to get her here fast.  Nicole immune will be even more compromised then it was with her first transplant.  She doesn't have any T-Cells.  I really do not understand how all this works-I just need to trust the doctors  :)

I love this analogy by Neal A Maxwell:
"Let me give you this simple illustration of how we can know something and yet not be able to communicate it fully without the help of the Spirit. If I were to bring one of you into this hall and if, instead of all of you, it were filled with fifteen thousand mothers and if I were to say to you, “Somewhere in that audience is your mother; find her,” you could do it, and I suspect it wouldn't take you very many minutes. But if I said to you, “Wait outside. There are fifteen thousand mothers in there and one of them is your mother. Now, you describe her to me with sufficient precision and clarity so that I can go find her,” you couldn't do it. You would still know what she looked like, but tongue could not transmit what you knew." (http://speeches.byu.edu/?act=viewitem&id=1022)
This is how I feel when it comes to explaining my experience with Nicole.  When the doctors tell us what is going on I understand; but, to explain to others who haven't lived this world I can't explain it.  It is also hard to explain my emotions.  I have had many experiences here that I would never trade.  The lessons I have learned are priceless to me.  The other kids and parents I have met are some of the most amazing people I have ever met.  The hospital staff hold a special place in my heart. 

Neal Maxwell also taught:
"If God chooses to teach us the things we most need to learn because he loves us, and if he seeks to tame our souls and gentle us in the way we most need to be tamed and most need to be gentled, it follows that he will customize the challenges he gives us and individualize them so that we will be prepared for life in a better world by his refusal to take us out of this world, even though we are not of it. In the eternal ecology of things we must pray, therefore, not that things be taken from us, but that God's will be accomplished through us. What, therefore, may seem now to be mere unconnected pieces of tile will someday, when we look back, take form and pattern, and we will realize that God was making a mosaic. For there is in each of our lives this kind of divine design, this pattern, this purpose that is in the process of becoming, which is continually before the Lord but which for us, looking forward, is sometimes perplexing." (Neal A. Maxwell, but for a small moment (http://speeches.byu.edu/?act=viewitem&id=1022))
When our family looks back on this experience we will see how the "unconnected pieces of tile" connect and make a "mosaic" pattern.  The Lord is in the details of our lives!