Tuesday, June 10, 2014

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.

Monday, June 9, 2014

Mother, you are there

Nicole has had a lot of energy during this time.  I know that the chemo will catch up with her soon.  But for now we are enjoying our time together playing.  Thank you for all your support, love and prayers.  I know that they are lifting us during this journey we are on.

giving our ponies a bath:)

Laura's face paint from the telethon

Nicole sucking her belly in and out
Every time I leave the hospital to go home my heart breaks a little. My car has known a few tears. (I tell the nurses that my car knows all my secrets;))  I know that she is safe with her dad.  I know that he takes great care of her.  I also know that the nurses watch out for Nicole.  As a mother you just want to be at the hospital with your child but you also want to be home with you other children. I wish I had words to explain. But I just don't. It didn't help that when we skyped for family home evening Nicole was upset that I was on the computer and not in her room.  I think she knows that when either her dad and I are on the computer means we are home.   I just keep waiting for my super cape to arrive from amazon but it is lost in the mail or something.  (I can't be super serious)

"No love in all the world can equal the love of a true mother. … I have felt sometimes, how could even the Father love his children more than my mother loved her children? It was life to me; it was strength; it was encouragement; it was love that begat love or liking in myself. I knew she loved me with all her heart. She loved her children with all her soul. She would toil and labor and sacrifice herself day and night, for the temporal comforts and blessings that she could meagerly give, through the results of her own labors, to her children. There was no sacrifice of self—of her own time, of her leisure or pleasure, or opportunities for rest—that was considered for a moment, when it was compared with her duty and her love to her children."
https://www.lds.org/manual/teachings-joseph-f-smith/chapter-4?lang=eng&query=mothers+love

Here are some words to a song that I found on LDS.org  I don't play the piano or sing.  I don't how the song goes.  But I loved the words♥

Mother, You Are There

Children:  When I left my home in heaven, and I came to earth to live,
Mother, you were waiting for me, arms wide open, love to give.
There are lessons you can teach me, and some happy times to share.
When I need a star to guide me Mother, Mother you are there.

Mother:  When you left your home in heaven, you had things to teach me too,
Patience, caring, lessons in love trust and joy I learned from you.
I will live a little better.  I will walk with greater care.
Knowing that your trusting footsteps follow, knowing you are there.

Children:  When I take a step and stumble, dearest Mother you are there.
I can see the hurt in your eyes, and I know how much you care.
When it’s dark and I am frightened, teach me how to say a prayer.
When I need a star to guide me Mother, Mother you are there.

Mother & Children:  I can always find a star to guide me, knowing you are there.
(https://www.lds.org/music/text/other/mother-you-are-there?lang=eng)

I don't know when this song was submitted but here is the other link to find the sheet music. https://www.lds.org/music/library/music-for-children?lang=eng

Sunday, June 8, 2014

Patience

Nicole is on day 5 of chemo or day -9 before her transplant, depending on how you want to think about it.  So far Nicole been handling her chemo really well. She has only thrown up once.  With the ATG chemo she received for the first 4 days, she could have had some serious reaction to it.  They pre-medicated her with Tylenol/Benadryl and Solu-Medrol (steroid) every 4 hours to help reduce the risk of a bad reaction.  Today she started with Fludarabine, which she will get for 5 days.  They say this one could make her a little nauseous.  They plan on seeing how well she handles her feeds. When she starts to throw up they will stop her feeds and start her with TPN and Lipids for her nutrition. (IV steak and potatoes).

Over the past few days I have pondered and read a little on patience.  Elder Joseph B. Wirthlin gave a conference talk in April 1997 titled "Patience, a Key to Happiness.  He gives the definition of patience "Dictionaries define patience in such terms as bearing pain or sorrow calmly or without complaint; not being hasty or impetuous; being steadfast despite opposition, difficulty, or adversity." Then he shares this scripture  "The Apostle Paul gave the purpose of patience in his epistle to the Saints in Rome: “We glory in tribulations … knowing that tribulation worketh patience;
“And patience, experience; and experience, hope” (Rom. 5:3–4)." I then went to the Preach my Gospel manual.  In chapter 6 "How do I develop Christlike attributes", I wondered if it said anything about patience.  The Savior endured much and I thought it must be one of his attributes.  It was there!! "Patience is the capacity to endure delay, trouble, opposition, or suffering without becoming angry, frustrated, or anxious. It is the ability to do God’s will and accept His timing. When you are patient, you hold up under pressure and are able to face adversity calmly and hopefully. Patience is related to hope and faith—you must wait for the Lord’s promised blessings to be fulfilled."  I thought related to hope and faith? I never thought of patience this way before. 
 
Nicole journey is teaching us patience.  But I always thought of it the way the world views patience.  Waiting for the appointment, lab results or for this doctor to come in.  I never thought of it as a step to become more like our Savior.  How grateful I am for the wisdom of our prophets and apostles that help me understand who our Savior really is.
 
Nicole chemo schedule before her transplant
The sweet welcome sign for Nicole
 
 
 
This is how we have keep ourselves busy-with stickers, stickers and more stickers:)
 
 

Monday, June 2, 2014

Does the Journey Seem Long?

Nicole will be admitted into PCMC on June 4th starting with chemo before her second transplant on June 17th.  There are a lot of details.  I am not sure how to explain them.  I think as we move forward it will be easier to share what is going on.  Things seem to go there own way and we can't really plan on anything.  Even though Nicole has had a transplant; each road will have it's own bend and bumps in it.  No two journey will ever be the same.  My mind as turned often to the song "Does the Journey Seem Long?" (Hymn #127) I have listened to this song many times over the past two years.  It holds a special place in my heart.  On Sunday we sang "Be Thou Humble"(Hymn 130).  I turned to the page that "Does the Journey Seem Long" was on.  I told James that I have thought "I should blog about this song". I just don't know what to say.  I think it explains my feelings without me needing to add anything.
 
"Elder Smith’s assignments away from home were difficult for Ethel and the children, and the weeks of separation were also painful for him. On April 18, 1924, he was traveling by train to preside at a stake conference. Ethel was seven months pregnant at the time, doing her best to care for the children at home. In a letter to her, he said, “I am thinking of you and wish I could be with you constantly for the next few weeks, to help take care of you.” As he thought of home, he closed the letter with a poem he had written. Some of the words to that poem now appear in many Church hymnbooks under the title “Does the Journey Seem Long?”" (Teachings of Presidents of the Church: Joseph Fielding Smith)
 
Does the journey seem long,
The path rugged and steep?
Are there briars and thorns on the way?
Do sharp stones cut your feet
As you struggle to rise
To the heights thru the heat of the day?
Is your heart faint and sad,
Your soul weary within,
As you toil ’neath your burden of care?
Does the load heavy seem
You are forced now to lift?
Is there no one your burden to share?
Let your heart be not faint
Now the journey’s begun;
There is One who still beckons to you.
So look upward in joy
And take hold of his hand;
He will lead you to heights that are new—
A land holy and pure,
Where all trouble doth end,
And your life shall be free from all sin,
Where no tears shall be shed,
For no sorrows remain.
Take his hand and with him enter in.






Alma 36:3 "And now, O my son Helaman, behold, thou art in thy youth, and therefore, I beseech of thee that thou wilt hear my words and learn of me; for I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day."

 
I just want to add that as we prepare for Nicole Bone Marrow Transplant.  I know that "whosoever shall put their trust in God shall be supported in their trails".  He is mindful of each one of his children.  -In the name of Jesus Christ, Amen
 
 Just a little side note.  I don't know how many of  you will watch the news.  But KSL has done a story about Nicole.  It will air Friday June 6 at 6 P.M.  It will also air for the telethon June 7th, on KSL, about 7:30 P.M. and then our family will have a live interview about 7:40 P.M.