Marathon

Nicole ANC is up to 200!!!  She needs to be at least 500 for two days and then they know she has engrafted James's bone marrow.  They did a chimerism test today.  This test will  evaluate the extent of how much bone marrow is Nicole's and how much is James's.  This test will take a couple of days before we get results.  Depending on what they learn  we will know if Nicole needs what they call a cell boost from James.  (He already donated enough that they do not need to get more from him.) In the beginning the doctors told us that with this kind of transplant it is common to do a mini transplant or a boost of James's bone marrow at some point over the course of her recovery.

I have called Nicole cancer journey a marathon not a 5K.  I am not a runner.  Run and fun do not belong together in my world.  To me running is hard.  Sister Dalton described some thoughts she had about running the Boston marathon.  She said there are hills the longest and steepest is called "Heartbreak" hill for a reason.  Along the journey we have faced many "heartbreak" hills.  At times along this journey I just want to curl up into a ball and say "this is so hard"!!  I often felt alone over the past two and half years because Nicole has been so isolated and people have been afraid or not known what to do.  Each one of us have trials that stretch us physically, emotionally, financially, and spiritually.  However, there are many people who have lined the streets to cheer us on.  I am grateful for the knowledge I have that even at times when I feel no one really understands what we are going through and I feel lost.  I know that our Savior knows.  He does strengthen us and He does help us and He does cause us to stand.

  Sister Dalton: "Several years ago, I had the opportunity to run the Boston Marathon. I had trained hard and felt I was prepared, but at mile 20 there are hills. The locals call the steepest and longest hill Heartbreak Hill. When I reached that point, I was physically spent. The hill was long, and because I was a novice, I allowed myself to do something no seasoned runner ever does—I started to think negatively. This slowed my pace, so I tried to think positively and visualize the finish line. But as I did this, I suddenly realized that I was in a big city, there were thousands of people lining the route, and I had not made any arrangements to locate my husband at the end of the marathon. I felt lost and alone, and I started to cry. I was wearing a big red T-shirt with the word Utah printed on the front in big block letters. As the spectators saw that I was crying, they would yell, “Keep going, Utah.” “Don’t cry, Utah.” “You’re almost finished, Utah.” But I knew I wasn’t, and I was lost. I also knew that even if I stopped running and dropped out of the race, I would still be lost.
 

Do any of you ever feel like you’re running up Heartbreak Hill and that even though there are people lining the route, you are alone? That’s how I felt. So I did what every one of you would do—I began to pray right there on that marathon route. I told Heavenly Father that I was alone and that I was on a hill. I told Him that I was discouraged and afraid and that I felt lost. I asked for help and strength to be steadfast and to finish the race. As I continued to run, these words came into my mind:

Fear not, I am with thee; oh, be not dismayed,

For I am thy God and will still give thee aid.

I’ll strengthen thee, help thee, and cause thee to stand,

Upheld by my righteous, omnipotent hand. "(https://www.lds.org/general-conference/2008/04/at-all-times-in-all-things-and-in-all-places?)

 

We haven't crossed the finish line yet.  We still have a long road ahead.  Even once we are out of the hospital they will be watching Nicole closely.  She has at least 18 months of being immune compromised.  Then years of watch care for relapse and long-term effects of radiation and chemotherapy. 

Nicole vomited up her NJ tube last night.  We decided to leave it out for now because her all her meds but one are IV.  She will take the one orally.  In this picture Nicole I was trying to get Nicole to smile for me.  She keep saying "no smile."

 

Sacrament, Nursery, and feeling better:)

This morning Nicole started her day with getting platelets.  She has been happy most of the day.  It's been so nice to see her happy. 

 

 

 

 

Her red eye isn't look better.  That will take some time to heal.

 

 

 

 



Again the sacrament was brought in for us.  What a blessing this is our lives.  The young man who brought it today also had a child with cancer.  He remembered us from when we were here when Nicole was first diagnosed.  He brought such a spirit with him.  When I expressed gratitude for coming and providing me with the sacrament.  With tears in his eyes he said that he remembers what a strength and healing this was each week for him. 

 

After we received the sacred ordinance of the sacrament the sweet young women came in to give Nicole her nursery lessons.  Again, what a sweet spirit they brought into our room.  It was cute to watch them interact with Nicole and to hear Nicole talk with them.  They talked about how we need family.  How moms and dad teach things we need to know.  As they were teaching, something President Hinckley said kept coming back into my mind. "Now there appears to be a growing tendency to schedule other events on Monday night. We respectfully request that our public school officials and others let us have this one evening a week to carry forward this important and traditional program. We ask that they not schedule events that will require the time of children on Monday evenings. We are confident that they will realize that it is most important that families have the opportunity, at least once a week, to be together without conflicting loyalties. We shall be grateful indeed if they will cooperate in this matter. And we urge, in the strongest terms possible, that fathers and mothers regard most seriously this opportunity and challenge to make of Monday evening a time sacred to the family.

I have received not a few invitations to participate in community Monday gatherings of one kind or another. I have uniformly turned down these invitations with appreciation, but with the explanation that I have reserved Monday as family home evening time. I earnestly hope that each of you will do the same." (https://www.lds.org/general-conference/2002/10/to-men-of-the-priesthood?lang=eng)

 

I am so grateful for the doctrine of families and for the program of family home evening.  Life is about family!  As we watch our little Nicole literally fighting for her life right now, everything else becomes trivial.  If everything goes well, then Nicole still won't be home, in Hyrum, for another 88 days.  Our family is still divided in many directions for awhile.  For now we will continue to Skype our family prayers, family scripture study and family home evening (and cherish the moments we spend together in Nicole hospital room).  It isn't the same as sitting around our living room. However, we are blessed to live in a time where we have the technology to stay connected. 

Importance of dads

James brought the girls down to Salt Lake to stay with me while he stayed with Nicole at Primary Children's. (James and I switch places on Thursday evening through Saturday, but I couldn't go back up to Hyrum with Nicole struggling so much). 

It was good for me to get away for awhile and spend time with the girls.  We took Kersten and her kids with us to the zoo for the day.  It was good to get out and see the sun and spend time with my girls and grandchildren. 

Nicole just needed some daddy time.  She is much calmer and her fever broke.  They still don't know what was causing her fever.  Even with her feeling calmer she is still uncomfortable.  You can see the mucositis in her mouth and lips.  She is still having diarrhea.  Her right eye is red due to bleeding caused by low platelets. Hopefully once her body can start making platelets that will heal.  Between the pain medication and the anti-nausea meds Nicole just spends most of her time sleeping.Her body is just working so hard to engraft. 

We came up to visit her on Friday after the zoo.  It was so nice to see Nicole calm and looking more relaxed.  I know that it was by the power of the priesthood that James holds.  I am so grateful that James is worthy priesthood holder to give all of our children blessings.  It has had me thinking a lot about the priesthood; not just James but also about my priesthood "dad".  My dad didn't hold the priesthood.  I had a wonderful home teacher who was always there for our family and the many times he gave me blessings.  He was my priesthood "dad" as I grew up.  It wasn't just the blessings he gave but the counsel he would give me about priesthood blessings and how they worked.  He never sat me down and gave me long lessons about the priesthood.  He would usually only say a sentence or two about the priesthood blessing work according to your faith. 

I found this quote by President Packer quoting our 6th prophet: "President Joseph F. Smith made this statement about the priesthood in the home: “In the home the presiding authority is always vested in the father, and in all home affairs and family matters there is no other authority paramount. To illustrate this principle, a single incident will perhaps suffice. It sometimes happens that the elders are called in to administer to the members of a family. Among these elders there may be presidents of stakes, apostles, or even members of the first presidency of the Church. It is not proper under these circumstances for the father to stand back and expect the elders to direct the administration of this important ordinance. The father is there. It is his right and it is his duty to preside. He should select the one who is to administer the oil, and the one who is to be mouth in prayer, and he should not feel that because there are present presiding authorities in the Church that he is therefore divested of his rights to direct the administration of that blessing of the gospel in his home. (If the father be absent, the mother should request the presiding authority present to take charge.) The father presides at t'he table, at prayer, and gives general directions relating to his family life whoever may be present.”    ^{(https://www.lds.org/general-conference/2010/04/the-power-of-the-priesthood?lang=eng)}


I was blessed to have a wonderful home teacher (and other great men in my home ward) with the priesthood in my childhood.  I am blessed to have a wonderful husband and father who has that power to bless my children.  He presides over our family worthily to "direct the administration of this important ordinance."

 Nicole resting peacefully with her dad:)

 

 

 

Nicole still resting peacefully for me today:)

 

Miracle workers

Nicole is more relaxed today.  Yesterday she went to sleep at about three in the afternoon and she slept until four this morning.  I think they have her pain medication figured out so she can relax. Nicole still is fevering and none of her test are coming back positive (some are still pending).  The fever can also be her body working hard as her dads bone marrow is trying to engraft.  She has been sleeping more today; but, she has also been up and playing more.

She was playing a little bit today :)

video is of Nicole giving Kermit her binky.

I am so grateful for the staff here at primaries.  The past three days the nurses have had to spend a lot of time in Nicole room.  They have even had a hard time leaving us to go home.  They have also stayed late to chart because of the time they spent in Nicole's rom.  They are truly are our miracle workers and the "angels round about you (Nicole and our family), to bear you (us) up"!

Sister Tanner told the young women "As we search, pray, and believe, we will recognize miracles in our lives and become miracle workers in the lives of others." Sister Tanner also taught "Everywhere there are young women who are in the middle of their own stories, facing dangers and hardships. As with Peter there will be “angels round about you, to bear you up” (D&C 84:88). They will sustain us as we carry our earthly burdens. Often in our lives, those angels are the people around us, the people who love us, those who allow themselves to be instruments in the Lord’s hands." (https://www.lds.org/general-conference/2004/04/all-things-shall-work-together-for-your-good?lang=eng&query=earthly+angels)

Thank you for also being our Miracle workers!! In Acts 12:55 "Peter therefore was kept in prison: but prayer was made without ceasing of the church unto God for him." (I also was reminded of this story from Sister Tanner talk).  Thank you for your prayers!!  They are truly felt here in Nicole's room.

small acts of service

Nicole had another long day.  She is still in a lot of pain and her Mucositis is still a huge struggle for her.  The NP has been very concerned about Nicole. Her blood oxygen level keeps de-saturating and she sometimes struggles a little to breathe.  She had an x-ray and ran a bunch of tests on her.  So far all has come back negative for any infection.  We are still waiting on some lab work on her blood cultures.  She has spiked a fever tonight.  They have had some more antibiotics to help fight or prevent anything else she might be fighting besides the mucositis.  They have also had the PICU doctors come and check her in case she needs to go down to PICU.

Last night Nicole needed some IVIG.  Today she also received platelets and blood.  Hopefully that will help her feel better. 

Today been another long day.  I have been reminded that the Lord is mindful of us.  One of the moms messaged me and asked if everything was ok because she noticed the x-ray machine coming in Nicole's room.  She sent some essential oils to our room to help us.  Another sweet dad asked if I wanted dessert from Chilis.  Of course I said yes! 

As hard as this journey is I have met some of the most amazing families.  The parents of the children here at Primaries are some of my heros.

Doctrine and Covenants 8:15 ... succor the weak, lift up the hands which hang down, and strengthen the feeble knees.  Even when the families here are going through their own struggles they try to help and strengthen others.

The Healing Power of the Atonement

I have watched and re-watched this video this morning.  I've read and re read the scripture in Alma 7:11 "And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people."

Nicole is in a lot of pain these past few days.  She doesn't understand why.  She wants to either sleep, cuddle in bed or just have me hold and rock her.  This is part of the process of her healing.  I know this mentally.  In some ways this second transplant been harder for me because it is so hard to watch her go through this again.  The words of the song "There is a Green Hill Far Away" been going through my mind, mostly the second verse, "We may not know, we cannot tell, What pains he had to bear."  As I watch Nicole going through this journey. I don't know how the pain is effecting her.  I don't know how to help her.  She is on a continuous pain pump that they have been increasing the dose for the past three days to hopefully alleviate the pain.  Our Savior didn't have a pain pump He felt each of our pain, so our burden may be lighter .  I don't know if I will ever fully understand the atonement.  But I think through my life I have had glimpses has I have tried to apply it in my life. However, the past few weeks I have felt/watched the suffering pain to some small degree.  I felt our Heavenly Father great love for us to allow his Son to suffer for us.  The atonement isn't just for the sinner.  It is for every part of our journey here in mortality.

There Is a Green Hill Far Away, no. 194

1. There is a green hill far away,
Without a city wall,
Where the dear Lord was crucified,
Who died to save us all.

2. We may not know, we cannot tell,
What pains he had to bear,
But we believe it was for us
He hung and suffered there.

3. There was no other good enough
To pay the price of sin.
He only could unlock the gate
Of heav'n and let us in.

4. Oh, dearly, dearly has he loved!
And we must love him too,
And trust in his redeeming blood,
And try his works to do.

I think I can! I think I can!

 

Today Nicole is feeling the pain of her transplant.  Her little body just aches and she is now on nasal oxygen. 

Froggy needs some oxygen!

Finally asleep with her nasal oxygen

Tonight I've been thinking about trains.  First is the "The Little Blue Engine".  I have had moments today of feeling like I just can't do this again.  It is so hard to watch her struggle.  I felt like the Little Blue Engine. "The little blue engine looked up at the hill.  His light was weak, his whistle was shrill.  He was tired and small, and the hill was tall." CRASH! SMASH! BASH!  I thought for sure was how this day would end.  Then  I thought of the "Engine that could"  He never gave up.  He moved forward "Slowly, slowly, the train started to move.  The dolls and toys began to smile and clap. " The engine could because he  knew that the dolls and toys were cheering him on.  He knew that the boys and girls where on the other side depended on him.
There are times in our lives when the Lord stretches us.  He wants us to grow.  But He doesn't leave us alone to climb the hill alone.  How grateful I am for Him!

The Little Blue Engine

by Shel Silverstein
(1930-1999)

The little blue engine looked up at the hill.

His light was weak, his whistle was shrill.

He was tired and small, and the hill was tall,

And his face blushed red as he softly said,

“I think I can, I think I can, I think I can.”

So he started up with a chug and a strain,

And he puffed and pulled with might and main.

And slowly he climbed, a foot at a time,

And his engine coughed as he whispered soft,

“I think I can, I think I can, I think I can.”With a squeak and a creak and a toot and a sigh,

With an extra hope and an extra try,

He would not stop — now he neared the top —

And strong and proud he cried out loud,

“I think I can, I think I can, I think I can!”He was almost there, when — CRASH! SMASH! BASH!

He slid down and mashed into engine hash

On the rocks below... which goes to show

If the track is tough and the hill is rough,

THINKING you can just ain’t enough!

The Little Engine that Could    

 Watty Piper's 1930 

               
Chug chug chug.  Puff puff puff.  He little rain ran along the tracks.  She was a happy little train.  Her cars were full of good things for boys and girls.  There were all kinds of toy animals.  Giraffes with long necks, teddy bears with no necks, and even a baby elephant.  There were all kinds of dolls.  Dolls with blue eyes and yellow hair, dolls with brown eyes and brown hair, and the funniest toy clown you ever saw.  There were toy trucks, airplanes, and boats.  There were picture books, games, and drums to play.  The little train carried every kind of toy that boys or girls could want. 
 But that was not all.  The little train carried good thing to eat, too.  Big, round oranges…fat, red apples…long, yellow bananas…fresh, cold milk…and lollipops to eat after dinner.  The little train was taking all these good things to the other side of the mountain.  “How happy the boys and girls will be to see me!” said the little train.  “They will like the toys and good food that I am bringing.”   But all at once the train came to a stop.  She did not move at all.  “Oh, dear,” said the little train.  “What can be the matter?”  She tried to start up again.  She tried and tried.  But her wheels just would not turn.  “We can help,” said the toy animals.  The clown and the animals climbed out o their cars.  They tried to push the little train.  But she did not move.  “We can help, too,” said the dolls.  And they got out and tried to
push.  Still the little train did not move.  The toys and dolls did not know what to do.   Just then a shiny new engine came puffing down another track.  “Maybe that engine can help us!” cried the clown.  He began to wave a red flag.  The Shine New Engine slowed down.  The dolls and toys called out to him.  “Our engine is not working,” they said.  “Please pull our train over the mountain.  If you do not, the boys and girls will not have any toys or good food.  The Shiny New Engine was bit friendly.  “You want me to pull you ?” he asked.  “That is not what I do.  I carry people.  They sit in cars with soft seats.  They look out the windows.  They eat in a nice dining car.  They even sleep in a fine sleeping car.  “I pull the likes of you?  I should say not!”  Off
went the Shiny New Engine without another word.  How sad all the toys and dolls felt!    Then the toy clown called out, “Here comes another engine.  A big, strong one.  Maybe this engine will help us.”  Again the clown waved his flag.  The Big Strong Engine came to a stop.  The toys and dolls called out together, “Please help us, Big Strong Engine.  Our train is not working.  But you can pull us over the mountain.  “You must help us.  Or the boys and girls will not have any toys to play with or good food to eat.”  But the Big Strong Engine did not want o help.  “I do not pull toys,” he said.  “I pull cars full of heavy logs.  I pull big trucks.  I have no time for the likes of you.”  And away puffed the Big Strong Engine without another word.  
 By this time the little train was no longer happy.  And the dolls and toys were ready to cry.  But the clown called out, “Look! Look!  Another engine is coming.  A little blue engine.  A very little one.  Maybe this engine will help us.”  The Little Blue Engine was a happy engine.  She saw the clown waving his red flag and stopped at once.  “What is the matter?” she asked in a kind way.  “Oh, Little Blue Engine,” cried the dolls and toys.  “Will you pull is over the mountain?  Our engine is not working.  If you do not help, the boys and girls will have no toys or good food.  “Just over the mountain.  “Please, please help us.”  “Oh, my,” said the Little Blue Engine.  “I am not very big.  And I do not pull trains.  I just work in the yards.  I have never even been over the mountain.”  
“But we must get there before the children wake up,” said the toys and dolls.  “Please?”  The Little Blue Engine looked at eh dolls and toys.  She could see that they were not happy.  She thought about the children on the other side of the mountain.  Without toys or good food, they would not be happy either.   
 The Little Blue Engine pulled up close.  She took hold of the little train.  The toys and dolls climbed back into their cars.  At last the Little Blue Engine said, “I think I can climb up the mountain.  I think I can.  I think I can.”  Then the Little Blue Engine began to pull.  She tugged and she pulled.  She pulled and she tugged.  Puff puff, chug chug went the little engine.  “I think I can.  I think I can,” she said.  Slowly, slowly, the
train started to move.  The dolls and toys began to smile and clap.  Puff Puff, chug chug.  Up the mountain went the Little Blue Engine.  And all the time she kept saying, “I think I can, I think I can, I think I can…”  Up, up, up.  The little engine climbed and climbed.  At last she reached the top of the mountain.  Down below lay the city.  “Hurray!  Hurray!” cried the dolls and animals.  “The boys and girls will be so happy,” said the toy clown.  “All because you helped us, Little Blue Engine.”  The Little Blue Engine just smiled.    But as she puffed down the mountain, the Little Blue Engine seemed to say…”I thought I could, I thought I could, I thought I could, I thought I could. 

 

What a differnce a day makes 🎢

Today is 5 days since Nicole transplant.  They refer to it as day +5.  I'll start with day +4 (yesterday); Nicole started to really throw up.  They added another anti-nausea medicine.  She gets something every 2 hours to help with the nausea.  They stopped giving feeds to her.  Right now she is only on IV fluids.   Even though she wasn't feeling well she stilled felt like playing.

She wouldn't put her pants on so we put them on her head

Playing with some glow sticks last night

Day +5 is another story.  Nicole had a rough night and it's continuing into the day.  They put her on a PCA (continuous morphine pump) They will also start IV nutrition tonight.  She is also on blow-by oxygen.  What a difference a day makes  😢

One of the blessings of being at Primaries is Sunday.  The Branch President has so much love for each one of us.  You can feel his love and you know that you could always call him if you need anything.  The young married couples who help with the sacrament and come to give Nicole a little nursery lessons always bring the spirit with them.  With Nicole being so uncomfortable today you could see in these young couples the love they have for the children here.  As the young women came in to give Nicole her Nursery lesson Nicole was not going to have any of it.  They wanted to still try to give her a lesson away. They know that our Father in Heaven wants the children to feel of His love for them, no matter how young.  Once they started to talk Nicole clamed down and listened.  When they finished up and started with prayer she got fussy again.  Then the young men came to give us the sacrament.  Again Nicole was grumpy.  But once they started with the sacrament prayer she laid her head on my shoulders and was quiet.  I have gained a stronger testimony of the sacrament and the strength it brings to help me to endure the week ahead. Elder Robert D. Hales said:  "I testify that the sacrament gives us an opportunity to come to ourselves and experience “a mighty change” of heart⁵—to remember who we are and what we most desire. As we renew the covenant to keep the commandments, we obtain the companionship of the Holy Ghost to lead us back into our Heavenly Father’s presence." (-conference/2012/04/coming-to-ourselves-the-sacrament-the-temple-and-sacrifice-in-service?lang=eng&query=blessings+of+the+sacrahttps://www.lds.org/generalment)  How grateful I am that there is a branch here at Primaries to help us renew our covenants each week; that I can experience "a mighty change of heart", remember who I am, and for the blessing of the companionship of the Holy Ghost.  The gospel is true.  No matter where you may be the Lord has servants who have watch care over you, to strengthen you and to remind you that you are not alone.

Blessings

It's been three days since Nicole's bone marrow transplant.  She's been doing pretty well.  She is tired but happy.  She has also started to throw up her oral meds so they switched all but one to be an IV medication for her.  She also has diarrhea and she is getting some mucus in them.  That means she is getting mucositis.  It won't be long before she will have sores in her mouth.  (mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract caused by the chemo she had).  Mucositis is painful and she will be probably be on some pain meds before long. 

James has recovered well from the bone marrow harvest.  He's been a little tired the past couple days, but otherwise is doing fine, and glad he doesn't have to give himself shots or get needles poked into his arms.  His neck is healing well from where they put the line in.

One of the blessing of being here at Primaries Children is watching other cancer kids support one another. I have personally received such love for other patients and I watch other children support one another.  Even though they are going through hard things they will look for ways to lift someone else. 

Sister Margaret D. Nadauld, a former General Young Women President said: "Might we all be lifted, helped, even carried at times by our beloved Savior, the Lord Jesus Christ. He feels what we feel; He knows our heart. It was His mission to wipe away our tears, cleanse our wounds, and bless us with His healing power. He can carry us home to our Heavenly Father with the strength of His matchless love." (https://www.lds.org/general-conference/1998/04/come-unto-christ?lang=eng)  I love this quote.  Our Savior does lift us!  He does wipe away our tears! He does cleanse our wounds! As President Kimball taught: "God does notice us, and he watches over us. But it is usually through another person that he meets our needs." (https://www.lds.org/ensign/1974/12/small-acts-of-service?lang=eng)

Lord, I would Follow Thee



1. Savior, may I learn to love thee,

Walk the path that thou hast shown,

Pause to help and lift another,

Finding strength beyond my own.

Savior, may I learn to love thee--

(Chorus)

Lord, I would follow thee.

2. Who am I to judge another

When I walk imperfectly?

In the quiet heart is hidden

Sorrow that the eye can't see.

Who am I to judge another?

3. I would be my brother's keeper;

I would learn the healer's art.

To the wounded and the weary

I would show a gentle heart.

I would be my brother's keeper--

4. Savior, may I love my brother

As I know thou lovest me,

Find in thee my strength, my beacon,

For thy servant I would be.

Savior, may I love my brother--

Thank you for all your small acts of kindness and prayers for our family♥

2nd Bone Marrow Transplant

Today was Nicole Bone Marrow Transplant day.  It is was a great day.  James stayed the day with Nicole up at the hospital.  The girls and I went out and did some shopping to get my anxiety down:) 

The nurse told James this morning that they would do the transplant today at 6:00 P.M.  We decided that we would bring the kids up about 4:30 and we would eat KFC for dinner in Nicole room together.  When I called James to tell we were on our way up, the nurse came in and told James that the transplant would be at 5:00 P.M.. I had Ana text my siblings of the time change and they just told their bosses we are out of here and they hurried up to Primaries to be with Nicole today. 

The girls and I got there about 4:45 and the nurse told us they just called and it will be at 5:30 P.M. Around 5:15 Roberto showed with James' bone marrow:)  He has been working on cleaning up and doing whatever they do since 6 A.M. this morning.  Long day for him!!

Here is Roberto walking in

Here is James Bone Marrow.  All that work for this much bone marrow.  Crazy!!

Her is meeting and visiting with Nicole.

 

I am so grateful that he willing to put in a 12 hour day for our little Nicole.  He tells it was mostly the machine that did the work.  But I know that it takes a lot of work to be sure the machine is doing it's job.

 

At 5:30 the Dr. Boyer and staff came in to sing "Happy BMT Birthday" It was a fun experience.  They put a banner up and gave Nicole gifts.

 

My oldest sister and my brother watching Nicole.  And Dayna, on of Nicole NP holding the sign.  

Nicole looking at all the crazy people singing to her.

James also received a certificate and shirt.

Dayna giving Nicole her gifts.

She LOVED the bunny:)

The quilt is so adorable and fun

 

 A cute fisher price store.

 

 

 

They give us a calendar to count how many days post transplant we are.  We also get to guess what day she will engraft.  I love that they added pictures of Kermit on the calendar and on Nicole's banner.

Now it is the time for the Transplant.  This is the easiest transplant you can receive.  This transplant was a lot different then Nicole first transplant they brought is a big bag of Nicole first donor bone marrow.  It looked just like a bag of blood.  Today they brought in a syringe with just bone marrow.  They completely clean out any blood with it.  It was a whitish color and only a small amount it took they nurse about 10 minutes to push it through Nicole central line.  

 

Here they are getting the line cleaned and prepared.

Here is another picture of the James's bone marrow.

Here is James' Bone Marrow being put into Nicole body.

 

This is the easy part; now we need to wait for her to engraft.  That is the hard part.  This where her body will start to ache and fight against the new marrow.  It will be along next couple of weeks for Nicole.  It is amazing to me how our bodies work.  They put the new marrow in and it will just know where to go. One day we will blog and explain more about what her body is doing and what engrafting means. 

 

We are grateful for all the support and prayers.  They truly strengthen us. 

 





 



 

Great Harvest

Yesterday was a great day.  It started for me at 7:30 AM, and finished at about 6:30 PM.  I was trying to get geared-up for my final two Neupogen shots when the nurse brought in four needles and I thought, "you've got to be kidding!"  but that's the joys of being an adult patient at a pediatric hospital.  Anyway, I gave myself the shots, but that kind of set the tone for how the day would go.

I survived five arm pokes (3 right arm, 2 left arm) for IV placement, but it was for naught.  I have a lot of anxiety when it comes to needle pokes for blood draws, so this was lots of fun.  Due to mis-communication, the first two IVs that they placed were not large enough for the machine (the needles themselves were 17 gauge and were fine, but the tubing attached to them was too small).  The other three pokes were failed attempts.  So eventually I went down to surgery and they placed a large PICC line in the right side of my neck.  I'd been fasting since the day before in case of this eventuality.  They numbed the area and gave me enough anesthesia to relax me, but not enough put me out.  I finally got hooked-up to the harvesting machine at about 12:30 PM.

I was on the machine for nearly four hours (it went a little faster with the PICC line than it would have with an IV).  I experienced some interesting sensations; a couple hours into it, my whole face started tingling and went numb.  They gave me some calcium and it went away.  Near the end, it felt like my whole body was vibrating; I wasn't actually shaking at all, but I felt like a plucked string on a violin.  I joked with the attending technician and nurse that I felt like I was hooked-up to The Machine in the Princess Bride movie and asked how many years they'd sucked from my life.  By the time it was done, I felt drained and tired, but that was it.  I imagine it was much, much better than having marrow extracted directly from my bone.

I got back to Nicole's room at about 5:45 PM, and around 6:30 PM the results of the harvest came in:  43.8 million bone marrow stem cells.  The goal was to get 10 million, so no need for me to go through the collection process again.  They pulled the PICC line with me laying on the couch in Nicole's room.  Nicole was watching from her crib and said, "Daddy, froggy!" and tossed Kermit over to me; it as really cute.

The transplant will take place this evening.  Nicole is still doing pretty well, and I'm feeling much better, just a little achy and a sore neck.  I am very grateful for the many people who have been offering prayers in our behalf.

necessities of life

Today I have been thinking about the family proclamation. Especially the part about: "fathers...are responsible to provide the necessities of life"  Today James been doing just that.  In a way that I can't express adequately.  When you think about the necessities of life you might think a home, food, clothing-stuff that fall into the worldly category.  But today the word "necessities of life"  means bone marrow and a third chance of life for Nicole.  That we maybe able to provide the worldly "necessities" for her.   

 

“Husband and wife have a solemn responsibility to love and care for each other and for their children. ‘Children are an heritage of the Lord’ (Ps. 127:3). Parents have a sacred duty to rear their children in love and righteousness, to provide for their physical and spiritual needs, to teach them to love and serve one another, to observe the commandments of God, and to be law-abiding citizens wherever they live. Husbands and wives—mothers and fathers—will be held accountable before God for the discharge of these obligations.

“The family is ordained of God. Marriage between man and woman is essential to His eternal plan. Children are entitled to birth within the bonds of matrimony, and to be reared by a father and a mother who honor marital vows with complete fidelity. Happiness in family life is most likely to be achieved when founded upon the teachings of the Lord Jesus Christ. Successful marriages and families are established and maintained on principles of faith, prayer, repentance, forgiveness, respect, love, compassion, work, and wholesome recreational activities. By divine design, fathers are to preside over their families in love and righteousness and are responsible to provide the necessities of life and protection for their families. Mothers are primarily responsible for the nurture of their children. In these sacred responsibilities, fathers and mothers are obligated to help one another as equal partners. Disability, death, or other circumstances may necessitate individual adaptation. Extended families should lend support when needed.” (https://www.lds.org/topics/family-proclamation?lang=eng)`

 

There were some challenges this morning getting an IV in to be able to harvest James' bone marrow.  They tried to get five IV in him but none of them worked.  They finally took him downstairs to place a PICC line in his neck.  Once they got that in, things have gone smoothly.  He should be done soon with the collection or harvest.  Then they will process his blood to only get the bone marrow.  Don't ask me to explain.  I never knew that blood was so complicated.  I am so grateful for people who research and are inspired with the technology that we have. 

 

Again,  Thank you for all your love and support. 

 

 

I Want to See You be Brave

"Greater love hath no man than this, that a man lay down his life for his friends."  (John 15:13).  The Savior demonstrated His infinite love for each of us though His atoning sacrifice.  I have pondered on this statement by Christ, and I believe that if I were put to the test, I am willing lay down my life for my wife or for each of my seven children.  Certainly I am willing to endure a week of misery for Nicole.

I do not like shots, and I definitely do not like giving myself shots.  The first day (Thursday) I did one Neupogen shot in each thigh.  Since then, for the past three days I've done them in the abdomen, one shot on each side, mostly because it is easier for me to relax my abdomen than my thighs.  (I was originally going to name this post "Gut-shot" but that really isn't the focus of the post.)  I have to mentally prepare myself to do the shots.  I go through a little ritual where I take some deep breaths and try to relax and then I first picture the Savior in my mind, and then I picture Nicole, and then I do the first shot.  It hurts a little, of course, and I push the syringe very slowly, because it seems to hurt less.  Then I do the same with the second shot.  After four days, this hasn't gotten any easier.  In fact, it might be getting a little harder.

 

 



 

I feel achy and tired, like I'm sick with the flu, and I have a perpetual headache.  My hips and lower back ache in the bone, and sometimes I experience sharp pain and significant discomfort there, especially when I'm sitting down.  I have a hard time falling to sleep, and a hard time staying asleep.  The doctor is willing to prescribe pain medication if I need it, and perhaps I should have gotten some, but I've just been taking Tylenol and Ibuprofen and doing ok with that.  I'm not enjoying myself and don't feel like doing anything, but I can still function.

On the second day (Friday), there was a time when a pain flare went through me like a wave.  It started in my hips and then rapidly proceeded up my torso like a ring of pain, going individually through each of my ribs on both sides of my rib-cage until it reached my collar bone.  It was weird, frightening, and fascinating all at the same time, but it only lasted for a couple seconds and I haven't experienced that same sensation since.

By the end of next week, I should be feeling just fine.  Nicole is the truly brave one, not me, and she still has a long, long journey ahead.  I believe that I am a better person because of each of my children, but I think Nicole is teaching me, her mother, and each of her siblings about true courage in the face of adversity.  I pray that God will strengthen her to go the distance, whatever the end may be.



update before transplant

Nicole been doing ok.  She received a chemo yesterday that comes out her pores.  She's needs to have three baths a day for three day (Sunday night will be her last day)  She is loving getting out of her room to go to the tub room for her bath. However, I am having anxiety because her central line isn't covered and it isn't protected. Having any tape on her skin can cause her skin to burn.  They also needed to pull her NJ tube.  She is only received iv fluid.  The little stinker refused to eat or drink.  She will take her med oral, however.  Tomorrow, Sunday June 15, will be her last day of chemo.  Then on Monday James will have his bone marrow harvested for Nicole.  Then on Tuesday, after they process James' bone marrow, Nicole will receive James' bone marrow.

As the day of Nicole transplant approaches, I have been pondering the atonement.  I don't have the words to express my feeling adequately.  I'm not super articulate.  Nicole accepted "the bitter cup" with a smile.  James is also willing to sacrifice for his daughter. As I read the following statement from Elder McConkie I thought I really have no idea how either James and Nicole feel. The Journey is different for each one of us.  As I read this article I thought of the angel who came to "strengthen" the Savior.  We have many angels around us strengthening us.  I have wondered what kind of relationship did we have in the pre-mortal world with each other.  We know that the Savior and Adam (who was Michael in the pre-mortal world) had a relationship there.   Then the phrase "this suffering beyond compare—continued for some three or four hours."  It will take about 4 hours for James bone marrow to be harvested; he will not be suffering like the Savior did for all of us, but he is making a very personal sacrifice to try to save his daughter's life.

Bruce R. McConkie "We know that in some way, incomprehensible to us, his suffering satisfied the demands of justice, ransomed penitent souls from the pains and penalties of sin, and made mercy available to those who believe in his holy name.

We know that he lay prostrate upon the ground as the pains and agonies of an infinite burden caused him to tremble and would that he might not drink the bitter cup.

We know that an angel came from the courts of glory to strengthen him in his ordeal, and we suppose it was mighty Michael, who foremost fell that mortal man might be.

As near as we can judge, these infinite agonies—this suffering beyond compare—continued for some three or four hours."  (https://www.lds.org/general-conference/1985/04/the-purifying-power-of-gethsemane?lang=eng)

Having some fun times with her favorite cousin Erin yesterday

Feeling a little more tired today     

Heroines, Saviors

As I have been preparing to be Nicole's bone marrow donor, I have thought a lot about her first donor, Laura, and my heart always fills with gratitude; she had marrow harvested directly from her pelvis bone in order to give a complete stranger a chance to live.  Laura literally saved Nicole's life and because of her willing sacrifice, she is a heroine to our family.  We haven't met Laura in person yet, but we have enjoyed becoming acquainted with her through email, and consider her to be part of our family.  In a way, Laura is like another mother to Nicole.

 

Now I will share some details of the bone marrow harvest and transplant process.

 

When we first learned about the possibility of using Cathy or I as the donor, I was under the mistaken impression that the bone marrow from the parent could not completely replace the bone marrow in the child.  That isn't true, and the purpose of the chemotherapy that Nicole is currently receiving is to completely destroy all of her bone marrow (and by extension, her immune system), and replace it with mine, the same as was done with her first transplant.

 

There are more potential risks and complications with a ‘matching’ parent donor than with an unrelated donor (which was used for her first BMT), and controlling graft-versus-host disease (GVHD) is an even more serious concern with a parent donor.  A sibling donor is actually most preferred for a BMT, but none of Nicole’s 6 siblings were a match.  The hope with using me as the donor is that (due to a certain, specific protein mis-match) my bone marrow will effectively fight and kill any residual Leukemia in Nicole’s body, thus preventing a future relapse.

 

Anyway, I will get some training on Wednesday (6/11) and then start giving myself Neupogen shots from this Thursday to next Monday.  I’m told that the shots will make me feel achy, tired, run-down - basically flu-like symptoms.  Some people also experience significant bone pain and require some pain management, and I hope I don't end up experiencing that.

 

I will undergo the bone marrow collection process next Monday (and again on Tuesday, if necessary – this would postpone the BMT to 6/18 because they have to do some post-processing on the bone marrow after doing the collection).  My collection will be different and less invasive than the one that Laura experienced.  It used to be that bone marrow had to be harvested directly from the bone, but a process has been developed recently, similar to dialysis, that takes blood into a machine that collects bone marrow stems cells from the donor’s blood and then re-circulates it back into the donor.  It may be necessary to place a temporary extraction line in my neck if they cannot get a big enough IV in my arm.  The actual collection process typically takes 5 to 6 hours (the entire volume of blood in my body gets circulated through the machine many times, one cup of blood at a time) and the goal is to harvest at least 10 million bone marrow stems cells from my blood.  The doctor says most donors are fully recovered within a couple days after the procedure.

 

The actual transplant procedure for Nicole is quite simple; last time it was much like a blood transfusion – the bone marrow stem cells go into her bloodstream and then just know where to go and what to do.  This time sounds like it may be a little different, with just a large syringe instead of an IV bag, but it is the aftermath of practically killing her and putting this new material into her body that is the long and difficult part.

 

Nicole will, of course, be totally immune-compromised for quite some time., and apparently even more so with a parent donor.  If things go well, she’ll likely spend 7 – 8 weeks in the hospital, until she 'engrafts' and the GVHD is under control, and then she’ll be required to spend another 8 – 9 weeks in close proximity to the hospital, with frequent clinic visits and lots of round-the-clock medication.  It is a minimum of 100 days after transplant before she will be allowed to go home.  Clinic visits and medication continue, but taper-off slowly over the course of a year or more, as her immune system gradually strengthens.  With a parent donor, they say it's about 18 months for the recipient's immune system to recover.

 

If the transplant fails (statistically a 4 in 10 chance), there’s not much else that can be done medically for Nicole, and it would prove fatal to her (which is the same outcome as if a transplant was not attempted).  However, if the transplant is truly successful, then Nicole will be ‘cured’ of Leukemia, and all we will have to worry about are the long-term side-effects from the chemotherapy and radiation therapy she has received.

 

We still feel strongly that the Lord will again preserve Nicole's life, but we also understand that death is only a temporary separation of family.  The Son of God suffered death, both physical and spiritual, in our behalf and triumphed over them.  Because of our Savior's atoning sacrifice, all God's children will be resurrected, and if we live worthy of it, we will be bound together in family units in the next life:

 

For God so loved the world, that he gave is only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.  (John 3:16).

 

I believe in God, and I know that His promises are sure.  How grateful I am for our Savior, and for Laura, and for everyone else who has and is helping to lift our burdens.