Hello from Houston

The thing I am most continually amazed at is River's ability to SMILE even when she feels so sick.  

This picture sums it all up for me:

Blue Shirt

Her faithful polar bear "Mr Carrots" 

He's been with her since she was tiny and accompanies her on all things medical.

Shake - when it's so hard to eat - shakes help get some calories and vitamins into her.

Frozen fruit, canned peaches, fresh fruit, yogurt, and milk.  Sometimes icecream!  

River has had a really rough road here in Houston.

Chemo took her down.  Immunotherapy took her further down.  

Her pain that had gotten SO much better in December came back in full-force...

We had felt the new pain med had been working in December...and I had high hopes that the incredible debilitating pain was behind her...  

Now she struggles with Constant Pain on top of intense nausea and incredible fatigue.  

Migraines are now a regular part of her life too.  

And then I see this SMILE shine through.  

I need to post these pictures that were taken on the better days right before the 2nd Round started to give me hope that we can get back here.  We don't see these radiant smiles these days...River speaks in a whisper and every step is painful.  Even sitting on the couch is too much sometimes.    

I don't take many pictures of her sick and hurting - they hurt my heart too much.  So the pictures I post are on the best moments.  

Miracles and Tender Mercies have lined up along the way.  

River's cancer tracer (AFP) went from over 1,000 down to 200 which was great! (shooting for 10)!!

While the CT scan showed the 2 tumors in her right lung were slightly larger than before therapy, because the tracer is so much lower, the cancer doctors felt that the size increase could be explained by inflammation as the Tcells are taking out the cancer.  

Since there was an incredible decrease in the cancer tracer, but the cancer was not gone, we applied to the FDA for a 2nd round of immunotherapy treatment.  It took 2 weeks to have scans, FDA approval and out-of-network insurance approval.  It was incredible as all of those lined up so relatively quickly.

1st Round Timeline:

AFP End of December:  Over 1,000

We left home January 3rd.  

Chemo Jan 6-8

Immunotherapy Transfusion:  Jan 10

February 6th, her AFP was 207!!

3 better days of feeling more up than down before Round 2 began.  

2nd Round Timeline:

Chemo March 2-4

3 full days of awful poison.   

That took her very low.  

March 7th:  Immunotherapy Transfusion

That took her even lower with intense flu-like symptoms including awful aching in her joints. 

March 11, cancer tracer was back up to 1,160....  :( 

...It's so hard to watch River go through SO much pain, nausea and sickness to have cancer numbers rise again...higher than they were when we got here...

BUT then I'm reminded that the TCells went throughout her entire body.  We will never know how many tiny pockets of cancer it took out.  We'll see what the second round can do and if we can knock more out.  The next step of this journey will be discussed after the CT scans in April.  We will need to see the results of this round of treatment, and what the cancer has done.  The amazing ever-growing team of Dr.s surrounding River will discuss the next step.  

It probably involves lung surgery.      

So we will be here until after the first part of April.  

If we go home when scheduled, we will have been here for 14 weeks!  Original plan was 6 weeks.  

 I'm trying to take life one step at a time.

  

Precept upon precept, line upon line, here a little and there a little.  -Isaiah 28:13

I think that's the way the Lord designed mortality.  One step at a time  

I used to like having a plan.  I need to learn to take life as it comes and adjust accordingly. 

Trust in the Lord with all thine heart; and lean not unto thine own understanding.  

In all thy ways acknowledge him, and he shall direct thy paths.  -Proverbs 3:5-6

When a new path comes ... Trust the Lord

Be not weary in well-doing, for ye are laying the foundation of a great work.  

And out of small things proceedeth that which is great.  -Doctrine & Covenants 64:33-34

Here are some pictures of the Good Days!!!  We've tried to make the best of it and make some memories when possible in between treatments.

 A rare moment these days!
Before the 2nd round started again.  

River feeling up for an adventure!

THE BEACH!!

80 degrees here!!  

This does my heart good.  

SO blessed we could all come as a family.

We owe it all to Project Joy and Hope - an amazing organization that has 12 units to keep families together while away from home for medical procedures.
It has helped us spend so much time together and make memories. 
I love their motto:  Giving Joy and Building Hope.

Priceless times

Ocean Fish!

Pond Fish!

Canal Fish!

River pushes herself to be able to get outside and walk around when she is able.  

I'm proud of her efforts, most times just walking is very very hard.  She shakes from the pain when she stands, and getting to the bathroom and back is a major accomplishment.  

Today it took everything she had to hold onto Dad's arm to steady herself as she haltingly shuffled around the house.

Texan Tennis!

Summer on the Beach

Wave Jumping!

The Sea is my Happy Place!

There is an organization here in Houston called Sailing Angels 

They were amazing!

They took our family out for a few hours on a bay.  I'm amazed at the goodness of others - friends, family, and even strangers that reach out and lift and bless others by sharing their time, talents and love. 

Pokemon Go has been fun in the city!

Daddy Daughter Church Dance

Until Next Time!