Pilot

Today (9-3-2014) was an all-day clinic visit and just plain long.  We started out with Nicole throwing up her feeding tube in the waiting room. The best part of this happening at clinic is the nurse could put it back in for me. After we got her cleaned up, weighed, and vitals taken, we headed back to her room.  She had her labs drawn and then the nurse put her feeding tube back in (that was probably the worst part of our visit).  Nicole also went out of her room for a minute and visited with some of our other cancer friends. (one of my joys of going to clinic is seeing how our other little heroes are doing)

The test to check her blood for platelet antibodies came back negative.  The doctors now feel like her low platelets are associated with her GVHD, but they can't be certain at this point.  Because her body isn't making platelets on its own, the bone marrow doctors have taken her off one of her antibiotics, hoping that would help her platelets produce, but it didn't make a difference.  Now she receives an antibiotic through an IV once a month, and it takes an hour to infuse.  Nicole also needed more platelets today.  Her platelet counts were down to 7k.  They were at 32k last Friday, so that's a 25k drop in 5 days, which is very fast (and worrisome).

Also, Nicole's GVHD rash isn't clearing up, even with the steroid cream rub-down three times a day.  So now they have put her back on a very low dose of cyclosporine. It breaks my heart just a little.  With a traditional transplant, cyclosporine is the anti-rejection med they use, and Nicole was on that for a very long time.  With the parent donor transplant this time, they've used another kind of anti-rejection that isn't has hard on the body.  They are walking a fine balance with her GVHD.  They don't want to squash the GVHD so hard that it won't kill any Leukemic cells that she might still have.  But GVHD also has it's own complications - the rash is just an outward symptom.  They are hoping that the low dose of cyclosporine will help the GVHD to stop spreading but still allow the GVHD to do it's job versus the Leukemia.  If the cyclosporine doesn't manage the GVHD effectively, then they will need to put Nicole back on steroids. 

However, even with this turbulence, things are going well overall.  We are out of the hospital and the problems appear to be manageable.  It is just figuring out which course is best.

The rash on her face is the GVHD that she as all over body.

The West Valley area has grown a lot over the years I have been married.  But one thing that has stayed the same are the airplanes.  I think I learned to count by counting how many airplanes flew over my house.  Lately, as I have watched the planes go by, I have thought of the pilots and how much trust we put in them to get  us to our destination safely.  How we expect them to watch for dangers and take the precautions to keep us safe.  I have thought how they need to be obedient to the rules of flying or they put others in danger.  "Obedient" is one that I have thought the most about.  I just want to get in my car and drive home to Hyrum to be with my family.  But just like the pilots, Nicole's bone marrow doctors are guiding us to safety.  They have the training to "pilot" us safely to our destination, and right now, Nicole needs to be in SLC, not Hyrum.  Pilots also have a control center to guide them when they are going through fog or a storm.  I am grateful that our Savior is our "control tower" to guide us over the storms.
"Let us earnestly seek the light of personal inspiration. Let us plead with the Lord to endow our mind and soul with the spark of faith that will enable us to receive and recognize the divine ministering of the Holy Spirit for our specific life situations and for our challenges"  (https://www.lds.org/general-conference/2011/04/your-potential-your-privilege?lang=eng)

When I watch the planes fly over head I think of the word to the song: Jesus, Savior, Pilot Me

Jesus, Savior, Pilot Me
Hymn # 104

1. Jesus, Savior, pilot me
Over life's tempestuous sea;
Unknown waves before me roll,
Hiding rock and treach'rous shoal.
Chart and compass came from thee;
Jesus, Savior, pilot me.

 

2. As a mother stills her child,
Thou canst hush the ocean wild;
Boist'rous waves obey thy will
When thou say'st to them, "Be still!"
Wondrous Sov'reign of the sea,
Jesus, Savior, pilot me.

 

3. When at last I near the shore,
And the fearful breakers roar
'Twixt me and the peaceful rest,
Then, while leaning on thy breast,
May I hear thee say to me,
"Fear not; I will pilot thee."