2nd BMT birthday

Today is a day with mixed emotions for me.  It's been exactly two years since Nicole's first bone marrow transplant.  How grateful we are for Laura Geissler, who is Nicole's first bone marrow donor.  Without Laura we would not have Nicole with us today. Without her, Nicole's bone marrow wouldn't be clean and cancer free even today.  How grateful we are for her.  Laura saved Nicole life. 

With that being said, in about 3 weeks Nicole will need another transplant.  Some people may wonder why we are celebrating her original transplant birthday.  When we were told that Nicole had cancer it was hard to believe.  How does that happen?  A four month-old baby has cancer?  Adults get cancer not infants.  I have entered into a world of childhood cancer that has forever changed me.  I have people tell me that I am a different person.  But after you have seen children fight cancer so valiantly, it cannot help but change you.  Some win the fight, but too many do not win the fight.  Your view on mortality changes.  You learn that heaven is near these children.  You learn what true service is as you watch the children cheering and supporting one another even though they are fighting their own battles.  As you watch them gather after hours to go for a walk around the halls of the hospital or write notes of encouragement to another child who is having a rough day.  Or when they are finished with treatment, going and visiting others who are still fighting.  You see Christ-like service in action. 

So today doesn't just mean Nicole's first second chance on life.  But it also honors the many children fighting cancer who I have grown to love, and for the growth in knowledge/testimony of our Savior Jesus Christ, and His enabling Atonement. 

 

 

 

Pre-preparation for bone marrow transplant

Nicole started her day today with her 10th radiation treatment.  She only has one left on next Tuesday.  :)  Yesterday, we met James at PCMC for clinic to start their preparation for "their" bone marrow transplant.  Nicole went to audiology for a hearing test.  After that both her and James went to clinic for blood draws.  We also had some instruction from the nurse for the do's and don't of staying in the hospital after transplant.  James and Nicole both needed an EKG and chest x-rays.  When that part was finished James headed upstairs to get some training on being the donor while Nicole and I stayed downstairs for an Echo.  It was another long day in clinic, but productive. 

I am excited that we can be home again this weekend.  I feel like I have one foot in Salt Lake and the other foot in Hyrum.  Sometimes it starts to feel overwhelming.  I am reading the biography of Elder Eyering.  I just read the part where he was called as a bishop.  In it they quote "There will be times when you will feel overwhelmed. One of the ways you will be attacked is with the feeling that you are inadequate. Well, you are inadequate to answer a call to represent God with only your own powers. But you have access to more than your natural capacities, and you do not work alone." (ensign May 2002, Rise to Your Call) I know that this talk is mostly about being called to serve in church callings.  But I thought also of my calling as a mother.  Mothers are doing the Lord's work!!  At this time with Nicole preparing for her 2nd transplant, I am very aware of what it entails.  I know the long days and even longer nights.  I know the worry of every little thing.  I know how much this effects my others kids.  But I also know the Lord is on my side and my family side.  Joshua 1:9 Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest."
 
Thanks go to Marie Owns for doing these pictures of Nicole and family:)

 

Consider a butterfly

Nicole started radiation this week.  Things have gone well with everything.  She walks right back to the room where they do the radiation and lays on the bed.  The anthologist (she usually gets a different one each day) thinks it is so cute that she holds out her arm for the blood pressure cuff and holds out her finger for the heart monitor.  She gets a little panicky when the sleeping medicine starts to hit her. She reaches up and says mom then she goes to sleep for the radiation.  I (Cathy) quietly leave the room to waits for them to tell us she is awake.  When we go back to get her she is usually sitting up playing with the nurses (she already has the staff at LDS hospital wrapped around her little finger).  As we leave the radiation room Nicole always says "bye bed".  It just makes everyone giggle.

This is the spot where she is getting her radiation

We spent some time this week as a family in Salt Lake enjoying that Nicole is feeling good and happy.  It was good to just be carefree.  We spent one day at the zoo and  it was such a good time.  I should have stopped to take more pictures but I was just enjoying our time so much.  I am not a picture mom, that is why Kersten is the oldest to document our family life. 

Nicole and Cathy also came home for the weekend.  It is good to be in our own home.  Nicole keeps walking around the house saying "hi" to everything.  She is enjoying her mini vacation home.  We also met Nicole's new niece Valerie.  It was fun to be able hold and snuggle her for a minute. 

We also heard from the bone marrow team to learn what the schedule will be for Nicole the next few weeks.  We will finish up radiation (she only has 6 more days).  We will also have two long clinic days (May 22 and 27) for Nicole and James to have testing and education done before transplant.  Nicole will then be admitted into primaries on June 4th (She will be staying in the hospital at this point for a long time) to start chemotherapy before transplant.  James will have his bone morrow collected on June 16 (and 17th if needed) and Nicole will have her transplant on June 17th.  These are newest dates and hopefully the last of the changes.   

Despite all that we are going through right now as a family, I know that it is bringing us closer to each other and to our Savior and our Father in Heaven.

Elder Joseph B. Wirthlin taught:
“I testify that the Man who suffered for mankind, who committed His life to healing the sick and comforting the disconsolate, is mindful of your sufferings, doubts, and heartaches.
“‘Then,’ the world would ask, ‘why does He sleep when the tempest rages all around me? Why does He not still this storm, or why would He let me suffer?’
“Your answer may be found in considering a butterfly. Wrapped tightly in its cocoon, the developing chrysalis must struggle with all its might to break its confinement. The butterfly might think, ‘Why must I suffer so? Why cannot I simply, in the twinkling of an eye, become a butterfly?’
“Such thoughts would be contrary to the Creator’s design. The struggle to break out of the cocoon develops the butterfly so it can fly. Without that adversity, the butterfly would never have the strength to achieve its destiny. It would never develop the strength to become something extraordinary” (in Conference Report, Apr. 2000, 73; or Ensign, May 2000, 59–60).

In process of time

https://www.lds.org/bc/content/shared/content/images/gospel-library/manual/32502/48-09.gif

As I have looked at this picture I have thought of the mother holding to back of the wagon.  I wonder if there are children in the wagon just needing to know that their mom is close by.  I wonder if she is holding on because she doesn't know another way to find strength to go one more step.  Is she wondering, "How much longer is this journey"?  As I have looked at this picture I have thought of our journey with Nicole.  How many nights as we stayed at the hospital when the nurse would come and take Nicole's vitals have I needed say to Nicole, "It's ok I am right here".  How many times I have needed to say, "It's ok Nicole, I am here," just so I can hear her settle down and know she is ok.  How many times have I prayed "How much longer is this journey?"  I have thought of the pioneers for some reason this week.  Each day they had to get up, fix breakfast, feed the cattle, and break camp.  Each day they would walk miles and miles, then stop to regroup, eat lunch and water their team.  Then up they would go again and walk and walk some more. Then they would stop for dinner, unhitch the team, build fires, cook dinner, write a little in a journal. Sometimes they would play a little music and dance.  They found joy in their journey. 

The primary song "Pioneer Children Sang as They walked":

Pioneer children sang as they walked and walked and walked and walked.

Pioneer children sang as they walked and walked and walked and walked.

They washed at streams and worked and played.

Sundays they camped and read and prayed.

Week after week, they sang as they walked and walked and walked and walked and walked.

They didn't know where or when they would reach Zion.  They knew what they were commanded to do and they just walked each day with faith. 

In Moses 7:21 we are taught that city of Enoch was taken up to heaven "in process of time".  The Lord doesn't just snap His fingers and our trials are over. Just like the pioneers, just like the city of Enoch, each one of us moves forward "in the process of time" by getting up each morning and just doing the basics.  He wants us learn and grow from them one footstep at a time.  So many of our experiences our personal  experiences are for our own personal growth to become like our Father in Heaven.  Our goal, our Zion, is live in His presence with Him.

Nicole had an MRI this week and everything looks really good.  She also had a spinal tap and a bone aspiration today (May 9, 2014).  During that procedure she struggled with breathing and her heart rate dropped significantly; they had to intubate her and needed to do chest compressions as they did so.  These scary types of things have become fairly routine over the past couple years - just another part of the journey.  Everything turned out great and she doing fine this afternoon.

She will start radiation on Monday at LDS hospital.  She needs to be there each day at 7 AM for eleven days.  Nicole and I will be moving in with my sister at that time.  She will get about a 5-6 day break after radiation before she is admitted into Primary Children Hospital for chemotherapy prior to her bone marrow transplant. (around May 30th).

Thank You☺

As I reflected on today I haven't any great words.  My heart is overflowing.  I thought of two scriptures.  The first one was in D&C 58: 27-28; thank you for being "anxiously engaged".  It was overwhelming how many people came out to support our family.   

 

D&C 58:27-28: "Verily I say, men should be anxiously engaged in a good cause, and do many things of their own free will, and bring to pass much righteousness;

For the power is in them, wherein they are agents unto themselves. And inasmuch as men do good they shall in nowise lose their reward."

The second is the covenant we make at baptism. Thank you for helping lift our burdens in so many ways. Again, words do not describe the many ways that you have lifted our burdens. By your words, hugs, and support.
 

Mosiah 18:8-10: “And now, as ye are desirous to come into the fold of God, and to be called his people, and are willing to bear one another’s burdens, that they may be light;

“Yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort, …

“What have you against being baptized in the name of the Lord, as a witness … that ye will serve him and keep his commandments, that he may pour out his Spirit more abundantly upon you?”

 

 

Here is a simple video with a Primary song "I am glad for many things" (everything you need to know you learn in primary)

 

I added the picture of Nicole and Jace just because I think it is precious☺

clinic visit and new radiation date

Today Nicole had clinic. Her ANC is now at 300-Yippee:)☺  Her body is fighting her infections and building it's immunity.  We can go out and enjoy the sunshine and play☺ I need a break from Disney princesses☺

She needed platelets and red blood cells.  That meant we would have a long visit, I wasn't prepared for a 9 hour visit. 

Her blood pressure keep getting higher and higher.  The nurse and Nicole Dr were getting concerned about it.  They gave her some medicine to help her lose some water retention to hopefully lower her blood pressure, it worked.  Then with a happy heart we headed home.

 

 

It's so good to see her happy and playing:)

 



They are also changing her date for radiation.  Nicole been so wiped out with her infections; her Dr. feels it would be best to give her one more week to recover.  We will start radiation on May 12.  Next week we will do her MRI and bone marrow aspiration test.

As I was sitting in clinic today I keep thinking of the video with  Elder Holland:

“Having grown up in southern Utah and enjoying all the wonders and beauties of southern Utah and northern Arizona, I wanted to introduce my son to that and I wanted to show him places that I had seen and enjoyed when I was his age. So, his mother packed a little lunch for us, and we took his grandfather’s pickup truck and headed south onto what we call the old Arizona Strip.

“Noting that the sun was going down, we decided that we’d better get back. But we came back to a particular fork in the road, really the only one that at that point was absolutely unrecognizable. I asked my son to pray about which road to take, and he felt strongly that we should go to the right, and I did as well. And we went to the right, and it was a dead end. We went four or five or six hundred yards and it was an absolute dead end, clearly the wrong road.

“Turned around, came back out, took the other road. And clearly the road to the left was the correct road.

“Somewhere along the way, Matt said, ‘Dad, why did we feel, after praying about it, that the right road was the proper one to take, the correct one to take, and it wasn’t?’ And I said, ‘I think that the Lord, His wish for us there and His answer to our prayer was to get us on the right road as quickly as possible with some reassurance, with some understanding that we were on the right road and we didn’t have to worry about it. And in this case, the easiest way to do that was to let us go 400 yards or 500 yards on the wrong road and very quickly know without a doubt that it was the wrong road and, therefore, with equal certainty, with equal conviction that the other one was the right road.’

https://www.lds.org/media-library/video/2013-09-016-wrong-roads?lang=eng

"When making decisions, God expects us to pray, trust, and be believing and then not give up, panic, or "jump ship" when something doesn't seem to be going right." (

We have had so many dates to start with radiation that sometimes I wonder if we will move forward with her BMT.  I do know, however, that the Lord is in charge.  He is the one leading Nicole care.  He knows the beginning to the end.  Sometimes we need to start down a road to discover that isn't the path we should be on.  We just need to turn around and start down another until we find the one the Lord wants us on.