Update on River's Health

How do I even start...
It's been a long time since I've blogged about life, health, sickness, joys, and sorrows.
It's easier to write about the happy times...
It's hard for me to write about the things that are heavy and make my heart hurt so much...but I know there are so many people that love River, and want to know what is going on.  We are grateful for all of you and your prayers and well wishes.  So...Here goes:

I last blogged about River's cancer relapse and lung surgery in August 2018.  Her cancer tracer (AFP) went back to normal (less than 10).  In January 2019 it started climbing again.  It took 6 months to go from around 30 to around 100.  They can usually find the spot of cancer in a scan around 100.  It takes a million cancer cells to make the tiniest of spots visible on a scan.

During the month of May 2019 River really slowed down - which was concerning because with her previous relapse she was Jane in our community Mary Poppins play.  She was active and yes, she would become tired and need more rests...but for the most part very able to do most anything she wanted.

This time...it really started impacting her daily life.  She was in pain A LOT - leg pain, tummy pain, headaches, and fatigue.  She couldn't do many of the things she enjoys doing.  In talking to the surgeon about what this pain could possibly be she said we will never know all the effects of having that much chemo and those HUGE surgeries.  So much chemo at such a young age with a growing body...There is a heavy cost to her survival.

She had lung surgery on June 21, 2019 (Tanzi's Birthday).  All went well, and as far as recovery it was the most minor surgery she's had (if you can call chest tubes and cutting into your lungs minor).  Her body healed well from the surgery...but she started on a spiral downward with pain.  Intense...constant...pain.

July got worse.  August was AWFUL!  MRI scans, CTs, Ultrasounds to look at bloodflow in her liver - since many times when people loose that much liver (River had 80% of her liver removed due to cancer) blood tends to pool.  Everything looked normal.  Scope of her stomach and lining and upper intestines:   Normal.  Test after test of bloodwork looking for anything out of wack in her body or any germs or bacteria making her sick.  Nothing.  Gynecology gave her more ultrasounds:  Normal.  The good news is that all organs are functioning well and bloodwork always looks good. 

September she was in so much pain, she was admitted at Primary Children's for a full week where they ran more tests and a panel of Doctors from GI, Oncology, Gynecology, Psychology....looked at her, and put their minds together, more scans, more tests, No answers.  No relief for the pain.  I CANNOT fathom pain that is not reduced by Morphine, Codine, Oxycodone, Dilauded, Fentayl....just to name a few.  They took maybe the barest edge off of the pain...but it left her feeling SICK - it wasn't worth it.

This girl is TOUGH, she pushes through A LOT of pain.  After surgery she rebounds. After chemo rounds, she rebounded.  This time - she was DOWN.  And Crying - Tears rolling down her face...In SO much pain.  Sobbing.  Nothing would relieve the pain.  We came home with a diagnosis of "Functional Pain" because they couldn't find anything else to explain it.  Functional is such a horrible way to describe it, because she was NOT functional.

Most days are a STRUGGLE to get from her bed to the couch.  Words cannot describe how hard it is to not be able to take this away.  Always before with chemo and surgeries there was some measure of relief.  Intense Pain: meds took it down to a more manageable state.  Nausea:  Meds would bring that down and the intensity was not so strong. This is not phased at all...by anything.

She is usually crunched up in a ball and pressure feels a bit better - she brings her knees up to her chest.  Weighted Blanket...Hot Pacs...Even distraction and movies only go so far as many times she is unable to concentrate on them.  The thing that hurt my heart the most is that for a time she could no longer read.  So many things had been taken from her:  4H, Tennis, Young Women Activities, Friends, Helping build our new house...etc...etc...  And now that she's in bed much of the time - even reading is not possible at times when the pain is so intense it doesn't allow her to concentrate.

PLUS in September in the hospital AFP rose to 30.  Cancer is coming back.  Long Sigh.  Our oncologist came to see her in the hospital as she is writhing in the bed with tears slipping down her cheeks.  He said this is the 3rd relapse - only 2 months after being cancer-free.  This suggests there is a good possibility there is more cancer in her body, and he and the cancer team recommended chemo.  Really?  In a body that hurts this much and is this frail???  Yes.  We take care of the cancer so it doesn't take over.  BUT we need to wait for it to grow big enough to find where it is at.

We went home.  She started physical therapy.  It would wear her out completely, but they found that one leg was shorter than the other - that pointed to a nerve that was possibly pinched and then everything spiraled downward with lack of movement and crunching up muscles got really tight.  I was hopeful with some improvement over a couple of days.  Then the spiral downward again.

Since physical therapy things have improved.  She can get up and around on her own for the most part and she does have some good days (well, more like good hours) where she can enjoy being with sisters or friends or get excited about things like creating her own Halloween costume.  There are times when the pain is not so intense that she can read.  We are trying to find things that she can get excited about and research and create - new hobbies, audiobooks, new book series, fun movies - especially series that she can follow characters over time and look forward to new episodes.

One day she had to be in a wheelchair just to get into the hospital for Physical Therapy - I know its bad when she agrees to take a wheelchair ride instead of walk herself.  After that physical therapy session which was only a light massage and minor exercises to try stretching out cramped muscles - it was like she was in shock.  Shaking SO bad and in so much pain.  We got her home and the whole day was swallowed in shaking, shallow breathing and PAIN.  So I ask myself:  When do I take her into the ER?  Pain Meds DON'T help!  Maybe they could give her some oxygen and IV fluids...but for more hospitals and nurses and tests... After a Priesthood Blessing she was able to start breathing more deeply and relaxing enough to go to sleep.

The next day just happened to be my appointment for a referral in St George for a new Pediatric doctor.  He took one look at her hunched over rocking and asked me if she was ok?  Well...No...But this is our Normal.  He immediately took her inpatient and had a surgeon look at her to see if it was a pinched nerve.  We got our hopes up.  This would explain everything - why everything looked normal on all scans and why no pain meds touched this.  After a nerve block (I had to restrain her hands - it was AWFUL!) her entire abdomen and pelvis was numb on the surface - but her deep constant pain was still there.  They said it suggested something deep - like an organ instead of abdominal wall.  Sigh.  Take her home.  Home is better than the hospital.

While we were in the hospital September 17 they ran another AFP - the cancer tracer.  This time:  168.  Both times before it took 6 months to raise from 30 to 100.  This time it was only one month to go from 30 to 168.  Her Oncologist ordered a CT scan of her chest, abdomen and pelvis.  The plan was to do the scan as soon as possible - October 22nd in St George and then that week the team would put together a plan and decide what to do, most likely chemo, but surgery was also discussed, depending on what they saw and where.  We would then go up to Primary Children's Inpatient the week after (Oct 28th).  Well...our oncologist was out of town that week and we heard nothing.  We were preparing ourselves to face chemo again in a few days...it took until Thursday evening to get the news that no cancer was seen on the CT.  WHAT??  Seriously?

I don't know what this means...I'm afraid it might mean that it spread somewhere else that they didn't scan - like bone or brain.  Definitely not usual.  Pretty darn rare.  But River is the definition of rare.  But instead of dwelling of what ifs and getting too anxious we listened to our oncologist.  He said if we ran more scans next week because we didn't find anything on the previous scan, chances are slim to find anything and then we put more radiation and contrast in her body and she has to go through more blah.

River's surgeon and oncologist are also exploring the possibility of Immuno-Therapy to target the cancer.  Its where they take your own body and have it recognize cancer and attack it.  It is very successful with Leukemia, it is still in the experimental stages with solid tumors, but they started exploring that idea to see if she might be a good candidate.  We haven't decided anything yet, just started the conversation and see where it leads.

The surgeon and Oncologist both feel to wait 2 more weeks to run another AFP and then go from there depending on what they see - if it has exponentially grown - then do an MRI and PET scan at that time.  If still in the low range, then wait another 2-3 weeks to scan.  December 4th and 5th at the latest to do more scans, if not before then, depending on what AFP does.

The unknown is hard.  The daily intense pain is so hard.  To not be in control and be able to take this away or at least have something to relieve it breaks my heart.  So now we wait.  We were planning to go up for chemo - it felt like sitting on the edge of a roller coaster, just waiting for the plunge.  Many times Primary Children's has called that they want her up in Salt Lake that night.  There is nothing predictable about the medical world - we take one day at a time.  Whatever it hands us.  We go from day to day, hour to hour, minute to minute sometimes.

God is good.  We see many miracles and tender mercies in this journey.  Much pain.  But much goodness too.  Amazing friends that help with our rambunctious, healthy kids.  Helping clean our house and bringing in meals.  Visits and notes to let us know you are praying for River - it all helps SO much.   Many thanks to all who have donated money and time and service to help on this medical journey.  It is so appreciated.

Some Happy Times through it all:

We visited the Butterfly Biosphere at Thanksgiving Point.  She was hurting and done and ready to go home.  We stopped by the chrysalis station where the butterflies are hatching on our way out.  A worker came up and asked her if she would like to hold a butterfly, and what color.  Yes!  She answers, I would like a blue one please.

They brought her a butterfly and taught her how to get them to crawl on her finger.  We went around and gathered 8 butterflies at one time - they liked her flower pants!They let her release a new butterfly that had never flown.  What a special treat.  What kind, sweet people there are.

River's symbol of her cancer journey is a blue butterfly.

So in a nutshell everything feels uncertain right now.
Cause of pain:  Unknown
Location of Cancer:  Unknown
Treatment for the cancer:  Unknown

So I will focus on what we know for sure:
God is aware of us.  He loves us.  He listens when we pray.  He helps us along.

My favorite Hymn is "How Firm a Foundation"
The words are my fallback, when I feel uncertain, when my mind goes to anxious and worried places, I remember these words...and find peace.

1. 1. How firm a foundation, ye Saints of the Lord,
   Is laid for your faith in his excellent word!
   What more can he say than to you he hath said,
   Who unto the Savior, who unto the Savior,
   Who unto the Savior for refuge have fled?
2. 2. In ev’ry condition—in sickness, in health,
   In poverty’s vale or abounding in wealth,
   At home or abroad, on the land or the sea—
   As thy days may demand, as thy days may demand,
   As thy days may demand, so thy succor shall be.
3. 3. 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, upheld by my righteous,
   Upheld by my righteous, omnipotent hand.
4. 4. When through the deep waters I call thee to go,
   The rivers of sorrow shall not thee o’erflow,
   For I will be with thee, thy troubles to bless,
   And sanctify to thee, and sanctify to thee,
   And sanctify to thee thy deepest distress.
5. 5. When through fiery trials thy pathway shall lie,
   My grace, all sufficient, shall be thy supply.
   The flame shall not hurt thee; I only design
   Thy dross to consume, thy dross to consume,
   Thy dross to consume and thy gold to refine.
6. 6. E’en down to old age, all my people shall prove
   My sov’reign, eternal, unchangeable love;
   And then, when gray hair shall their temples adorn,
   Like lambs shall they still, like lambs shall they still,
   Like lambs shall they still in my bosom be borne.
7. 7. The soul that on Jesus hath leaned for repose
   I will not, I cannot, desert to his foes;
   That soul, though all hell should endeavor to shake,
   I’ll never, no never, I’ll never, no never,
   I’ll never, no never, no never forsake