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