Little Hill to climb

We are home from Primaries.  We only stayed over night for observation.  They don't know why her heart rate is elevated.  They have some ideas but they are only speculative. 

The rhinovirus (common cold) and the strep viridans (her line infection) is just beating her up.  Nicole still has no Neutrophil to help fight the infection.  She will go back onto IV fluids at night to help keep her hydrated.  She will continue with neupogen shots once a day, IV antibiotics, plus the basic medication she needs. 

We are excited to have us all home to participate in the "Nicole color me orange fun run" this Saturday.  We are overwhelmed with the support and effort that has gone into this event.  I have no to express our emotions.  Hopefully, one day I will have them. 

I so appreciate people willingness to drop things in their own lives to come to our rescue.  Over the course of this small hill we needed to climb I have thought of the words of Lucy Mack Smith:  “We must cherish one another, watch over one another, comfort one another and gain instruction that we may all sit down in heaven together.”    ^_ Relief Society Minutes, Mar. 24, 1842, Archives of The Church of Jesus Christ of Latter-day Saints, 18–19. 

This counsel is just as true today as in 1842.  How grateful I am for Relief Society organization.  I know people who think they know me might be surprised because I love being with the children in primary.  I know Relief Society is an inspired organization.  It isn't just for the sisters who sit in class on Sunday it is for each sister who is a member of the church no matter where they may be serving. 

Nicole waiting to go home

Nicole riding in the wagon to go home.

ticket to primaries

Nicole had an ok weekend.  Still not super happy.  Last night when I brushed her teeth her gums just bleed for a long time. It was a rough couple of hours to try to get it to stop.  I knew that when we went to clinic today that she would need platelets.

Nicole had clinic today.  All morning I had a feeling that I should pack an overnight bag but kept saying positive thoughts, that I am just overly worried.  Well I was wrong.  We got to clinic at 11:30 and they drew labs.  She did need platelets.  We were in clinic for about 5 hours.  Nicole's heart rate was high all through clinic.  We made our appointment for Thursday.  As we were buckling her up to head home they called James' cell phone to come back to clinic.  Dr. Raetz checked her and wants us to stay over at primaries for observation tonight.  

This world that we live in is always full of uncertainty and I should always be prepared for the worst. However, I guess lessons learn that I should heed the promptings of the spirit.  He will never lead you astray.  D&C 35:19 "...and it shall be given by the comforter, the holy Ghost, that knoweth all things."

pot-holes

We are finally home:) I was too optimistic to think we would get a three week break.

They replaced Nicole's central on Thursday.  The surgeon didn't have any trouble getting the line in.   Placing a 6th line is a little tricky; but, she said she got in on her first try.  What a blessing.

This week in the hospital was truly a learning experience for me.  Many thoughts and emotions.  At first we would be able to keep the line and be able to go home.  However, when they talked with the Bone Marrow Drs. they wanted the line pulled so Nicole would have a perfectly healthy line for her transplant.   In my gut I already knew this; I know a little how bone marrow doctors think. 

I have had a yo-yo week.  We had the "your keeping her central line" to "nope it needs to be pulled out".  Then we were told that Nicole would start radiation on May 1.   Then as I was leaving Primary children to come home I was told that she was starting radiation on Monday April 28.  Now they just called and said we are starting radiation on May 5th.  We were also told that she would have 5 days of radiation and now Nicole will have 11 days of very low radiation. (remember we are living a yo-yo life and this can change tomorrow:))

Monday was a rough day for me.  James is on a business trip my girls are in Hyrum flying on their own.  I just felt overwhelmed.  My thoughts turned to my childhood and how much I missed my "priesthood dad" How grateful I am for the neighborhood I grew up.  I felt my Heavenly Father love that He has for me.  I know that when Heavenly Father sent me here to mortality He said-you will be sent to a good home but the fullness of the gospel will not be there.  However, you will be blessed to live in a neighborhood who will love and teach you.  How grateful I am for that!! Elder Scott taught " Reach out to those living in adverse circumstances. Be a true friend. This kind of enduring friendship is like asphalt that fills the potholes of life and makes the journey smoother and more pleasant. It should not be a resource used to gain personal advantage but a treasure to be appreciated and shared. Welcome into your home others who need to be strengthened by such an experience."  My childhood neighbors still came/come to my rescue to fill in my "potholes"-Including their grandchildren;)

I am also grateful for the neighborhood my kids are growing up in.  So many in our neighborhood who are also filling in the "potholes" of our life.  “God does watch over us and does notice us, but it usually through someone else that he meets our needs.”
― Spencer W. Kimball

While I was at primaries this week I reviewed a talk by Elder Holland "Lessons from Liberty Jail".  I am no way near like the Prophet Joseph Smith; but how often do we turn to Doctrine and Covenants 121,122 and 123 when we going through hard times. "What a scriptural gift" (Elder Holland)  How often have we felt in a small portion like the Prophet did in Liberty Jail.  Elder Holland taught:
"remember these first two truths taught to Joseph in that prison-temple. First, God has not forgotten you, and second, the Savior has been where you have been, allowing Him to provide for your deliverance and your comfort."
This truth Joseph taught for us all in his "prison-temple"
http://speeches.byu.edu/?act=viewitem&id=1798

I know this is a long post.  I truly had a "temple" learning experience week.  Too much to really share.  I testify that what the Lord taught the Prophet Joseph Smith in his "Prison-temple" is true.

This is how Nicole comes out of surgery.  Like Joseph Smith taught in D&C 123:17 "let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."

sandpaper

Nicole is doing better. She is responding to the antibiotics; however, they are still going to remove her line.  She will go to Or tomorrow (April 22) to have it removed. She needs to have 72 hours of clear blood cultures before they will put another line in.

The bone marrow team wants her central line to be perfectly healthy to reduce the risk of infection.  They also want to put another line in as soon as they can because she is on IV fluids and antibiotics.

This will be Nicole 6th central line.  The surgeon struggled putting in her last one because her veins are so beat up and there is a lot of scare tissues. I'm trying not to have to much anxiety about this:/


I found this quote today by Elder Maxwell:  "In life, the sandpaper of circumstance often smooths our crustiness and patiently polishes our rough edges. There is nothing pleasant about it, however.  And the Lord will go to great lengths in order teach us a particular lesson and to help us to overcome a particular weakness, especially if there is no other way." (Notwithstanding my weakness)

Today I have felt that sandpaper polishing me. But I also have felt the peace of knowing the Lord is in the details. Things will work out for the best for our Nicole:)

infected central line

Saturday, 2014-04-19 (by James, Nicole’s dad)

Nicole has had a bad cold for a few weeks now; runny nose, coughing, mucous.  At her clinic visit on Thursday, her ANC was still zero, and she also seemed more miserable the last couple days.  Last night, she spiked a fever, and we had to take her to PCMC, and things aren’t good, because it appears that she probably has an infection in her central line.  If this is the case, it is usually very difficult to clear it up, and that means they will have to remove the line, and place a new one.  We hope this doesn’t happen, but that’s where things are headed.  She needs a little oxygen when she is sleeping, but otherwise is doing ok right now.  They are giving her neupogen to try to boost her immune system, along with antibiotics, etc.  She will certainly be in the hospital for 4-5 days, and possibly much longer, if things don’t go well.

So, another Easter in the hospital for Nicole; that makes two out of three.  However, this is a good reminder of how grateful we are for the Atonement of Jesus Christ, and the opportunity that we do have to commemorate his Resurrection.  I know that Christ has overcome death and sin, and that through His mercy and merits, we too will be resurrected.  I know that He is aware of Nicole and her suffering, and that He will strengthen her.  This knowledge has come to me by the power of the Holy Ghost, and brings me great solace.

Preliminary plan for radiation

I don't want to over post but I thought I would just update what we learned yesterday. We had a meeting with the Dr. Hunter, the radiologist. He would like to do 5 days of just local radiation on the spot where the leukemic cluster is. He feels five days at the lower dose would be better then just one big dose. He also wants to wait before anything is finalized until he hears back from St. Jude. (He wants to be positive that the course he has outlined it the best for our little Nicole). He drew an outline around the cluster and took pictures. Then his team will review everything and get back with us. The plan is start the first week of May. Remember, this is just preliminary nothing is set in stone.

We also visited her oncologist Dr. Raetz. She is pleased with the progress Nicole is making. Nicole ANC is still at zero, which means she has no immunity. Dr. Raetz is concerned about her cough, especially where there is no ANC to fight it . We were able to get her some cough medicine so both she, James and I can sleep:) We will go back to clinic on Thursday. She will get platelet transfusion on that day.

The weekend with Nicole home been one filled with coughing, throwing up, diarrhea, lots of laundry and lots of love. It's been good to have her home and to be able to enjoy this time before Nicole and I live at primaries for her transplant. We will also need to stay close to PCMC for the first 100 days after transplant. It will be a minimum of 4 months but probably closer to 5 months (with the prep work before transplant) before we are able to come back to Hyrum. After we are home in Hyrum the bone marrow doctors will keep a super close eye her for the first year. Will have lots of trips back and forth to PCMC.

I will be honest here I know this is a subject that no one wants to mention but Nicole may not survive. I know we always talk about having faith or praying for a miracle.  We do have a peaceful feeling that everything will be alright. But alright means I do not know.  I do know that whatever lays ahead of us is the Lord will. He is in the details of our lives and He perfectly aware of what our family challenges are.

Orson F. Whitney once said: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God . . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire” (quoted in Spencer W. Kimball, Faith Precedes the Miracle, 98).

I know this be true. I have learned more about our Savior and Our Heavenly Father is the past two and half years through our journey with cancer then I think I could have learned any other way.

Nicole and her dad watching "Let it Go" while we wait for her lab results.

Love is a Verb

We finished chemo for block 2 of treatment yesterday (Friday April 11).  We are now home for count recovery.  We get to be home for three weeks.  It feels weird to be able to type that we will be home.  With Nicole's first battle with cancer we were only home for about 15 days in 10 months.  For us to be able to come home between treatment feels like a huge miracle for us, or a "tender mercy of the Lord."

Nicole will have a couple of clinic visits each week to watch her blood count.  Usually during this time she will need a blood transfusion and/or platelets (she did get platelets yesterday).  They also watch that her ANC is going up.  We have an appointment with the radiation Dr. on Monday morning to make plans for radiation before her BMT. 

We do know that we when we return to PCMC it will be for her BMT.  We are not sure of any plans on that yet.  We only know that we will be home for three weeks.  On week 4 we will be doing out-patient radiation at LDS hospital.  Both Nicole and James will need to have some testing done that week.  Nicole will need an echo, hearing and another bone aspiration test.  James will be tested to be sure he is healthy enough to be her donor.  He will also need to do some prep work to prepare his body to donate his marrow.  It is good to know that we are moving forward.  It is also a scary time.  Nicole is the first patient that Primaries has done with a parent donor.  Nicole likes to make a statement and to be remembered.  She has a lot of firsts as a cancer patient at Primaries.

This week at Primaries I have often thought of the phrase "Love is a verb."  A verb is an action.  This week Nicole has received a few gifts from people who we don't know.

 

The bunny is from someone who donated to the KSL radio-thon.

 

This picture doesn't show it great but she received a box of Legos from a young man who also fought cancer who is now giving back.  

 

One of the joys of being at PCMC is people who give back. They share their gifts and talents in so many ways. Most through volunteering-they want to pay it forward by brightening a child's life.

Another friend brought me a bear for her to stuff.  The video of Nicole stuffing the bear shows up sideways on this blog.  I am not smart enough to figure out how to turn it around.  Here is a picture of Nicole loving the bear.  You can't see the t-shirt the bear is wearing; but, it says "Cancer fears me."

 



 We have received many acts of kindness.  Too many to share.  I am afraid I will leave someone out.  Thank you to all who have reached out to us.

Mary Ellen Edmunds has said, "Love is not only your sacks of groceries, your words, your clothing, your time, your loaf of bread-It's you. You have no idea how often you may rescue someone just by your countenance, the love that shines from your eyes." (her book "Love is a Verb")

Laundry room

Nicole is home from the hospital for the weekend.  She started this week with a lumbar puncture (chemo in her spine) then she received chemo for 36 hours straight through her central line.  To end this week she received one more chemo on Wednesday.  We needed to wait for the 36 hour chemo to clear her urine.  It cleared when it should have and we should have been heading home. (I could sound official and use the big words for each Chemo Nicole receives but I can't spell them;))  Nicole being Nicole got a fever on Wednesday night.  She only has a common cold; since the staff at primaries likes to be formal they tell us she has rhinovirus.  I know rhinovirus sounds intense. It is intense for someone who has no immunity to fight off the average everyday cold.  Nicole has been pretty miserable.  They keep her for one more night just for observation. 

 

Nicole will be admitting again on Monday, if her counts are high enough, for another 5 day at primaries.  She will receive two more chemo's.  If all goes well then for the next three weeks we will be going back and forth to clinic for labs and transfusion.  

 

I don't know the plan for block three, yet.  Hopefully we know more on Monday what the plan is and what the plan is for her bone marrow transplant.

 

I haven't posted pictures because one of Nicole eye is droppy.  It is a side effect from one of the chemo she received.  Sometimes I wonder if I should post a picture so we can see what chemo does to our kids.  But I don't have the heart today.

 

About 16ish years ago a friend gave me this poem when our washing machine was giving us grief.  I told my friend that we just keep praying that it will hold on for a while longer.  I think of this poem often while I am "hiding" in the laundry room at primaries.

 

While I am at primaries the laundry room is an "escape" for a few minutes from Nicole's little room.  In the laundry room I can be the only parent there.  When I am the only parent there I will usually just sit in one of the chairs and just ponder for a minute.  Other times I will met another cancer mom, grandma or dad. Sometimes we just give each other a look of "I understand or We can do hard things".  Sometimes we visit for a while about our child or the day we are having.  I have met some of the most amazing, strong people in the laundry room.  I have strengthened my testimony through them. Whether it's a mom who's child gets to ring the bell and go home (with hope he/she won't relapse) or a parent who will take their child home to go "home".  Sometimes I meet a grandparent who is trying so hard to support their grown child and grandchild who is fighting cancer. 

 

I may not be kneeling in the laundry room but I have found that the laundry room is my sacred place.

 

My Sacred Place

By Ranae Pearson

 

I have my own

Sacred Place.

I’ve found it

While kneeling here,

Alone,

In the basement.

I would have liked

Lush green grass

Beneath my knees,

And

I would have loved

To have heard

Birds singing

Instead

Of the constant

Rumblings of

The old freezer.

But

Somehow the Spirit

Didn’t seem to care

Whether I was kneeling

Near cement walls or

Quaking aspen trees.

I needed

Spiritual guidance.

I needed answers …

And I received them,

Right here,

Across the room from

The canned fruit,

Near the washing machine.

Aug. 1983 Ensign