Wednesday, February 25, 2015

Keep Calm and Carry On

The last round of chemo hit very hard.  16 days of severe sore throat - couldn't hardly get anything down - a sip here or there every few days, and then lots of pain.  It changed her taste buds - everything tasted gross!  Even water was nasty.  23 shots (one a day) to stimulate immunity - it is called her ANC (Absolute Neutrophil Count).  One of our nurses that had had cancer said their ANC never fell below 120.  River's was 0 for weeks.  0 immunity.  0 ability to fight of germs. Normal is around 10,000.  She needs to be around 700 to start chemo.  River had 3 platelet transfusions and a blood transfusion along with fever spikes. With cancer kids - a fever or sick can spiral pretty quick - a temp of over 101 and they need to get her to emergency room pronto!  She was on antibiotics for 2 weeks to kick anything down that could have flared - because of running temps.  

What a blessing one of the platelet transfusions ended up being - Platelets were dangerously low - so River and I drove over to St George about 6:00 pm one night.  We were pretty bummed because we were just going to have dinner and have a movie night with Daddy and the sisters...and had to head to hospital again!  In Hurricane (half hour from hospital) fever spiked to over 101.  We were already on our way!  She went downhill really fast.  She started shaking by the time we got to the hospital and barely made it across the parking lot. She couldn't walk and was shaking so hard.  Wheeled her up to her room and the doctor looked at her and gently touched her tummy.  SEVERE pain!  We needed to do xrays and a CT scan to see if everything was okay internally with that much pain.  It was pure agony for her to get into the wheelchair and have to turn to the side and put her arms up for xrays. CT scan at midnight.  They kept her for 5 days with pain and fever and never found anything - and the kind of chemo that she is on can inflame the lining of the whole GI tract - severe sore throat and intense tummy pain.  

She recovered last Thursday and was feeling pretty good.  Her throat stopped hurting so intensely and she started eating again.  We went to Zions as a family - she went hiking and walked and played!  Even in the hospital she was up for walks and up stairs and around.  We headed up to Primary's prepared to spend several weeks/months of lung surgery, recovery and then more chemo.  We met with the surgeon Monday to go over scan results and got such great news!  The surgeon was so excited for the results!!  She pulled up the first scans from September and started going through and showing us the cancer nodules - there were well over 50. She then showed us this weeks scans:  Now there are 4-8!!

Because the cancer had spread from the liver to the lungs, we needed to see if lungs were going to be able to be cleared or at least see if they would get down to few enough that they could cut out a few remaining nodules.  We also needed to have a good response of chemo just melting away the cancer to justify putting her through major liver surgery.  The surgery was to remove the 3 nodules in left lung and biopsy tissue - she says I don't need to biopsy it to see that this is a great response. The lungs were so much improved that no surgery needed right now.  It is preferable to remove the cancer with chemo as opposed to surgery - surgery is hard for recovery - giving other cancer in the body a chance to grow during the time that body is recovering.  Plus surgery leaves scars - in future scans it is hard to see if they are scars or cancer.
She was spared having to go through lung surgery right now!!

Road Map from here:  Chemo - then go to liver surgery.  Then bat cleanup on lungs after that with anything still remaining.

River with Hillary - Child Life Specialist at Primary's 
She is a cancer survivor herself that comes in and explains what is going to happen during procedures, where you will go, what you will see, what it will feel like.  
Here River and Hillary are doing the "Beads of Courage" River gets a bead for each procedure that she has done.  She has quite the collection of beads - for each shot - for each chemo for each CT scan, for each admission to the hospital, etc.


River running down the Ronald McDonald Hall.  River does the absolute best that she can.  Sometimes that looks like walking to the door and back to the bed.  Sometimes it looks like walking down the hall, or walking down the stairs, or here she was running down the hall - trying to beat her time.

Clay with sisters!

Tanzi - ice cream cone

Summer and Silver with their ice cream.
We had just gone to the dentist and Silver was SO cute!  She had 3 cavities that needed work - so they had numbed the top and bottom on one side of her face - she only could smile with half of her mouth!!
But ice cream fixes most everything!

Summer - they were laughing SO hard!

Tanz and Mom.

River - St George hospital.  Part of the reason why she ran a fever could be dehydration.  With nothing going in by mouth - and nausea for anything going in the tube - she needed fluid.  They dosed her up with a lot of IV water.  She says "mom!  My face looks different!" 


The nurse kept telling her what options they had in their craft cupboard and what could she bring her?  River thought and thought - for about 1/2 an hour - and then asked for a cardboard box, scissors, tape, crayons, and colored paper.  She made a boardgame - a fishing boardgame complete with movable board tiles so each game is completely different.  Pretty creative!

Hospital is just across from the temple.  
It was very neat to be able to see the temple and remember our covenants and that our Family is Forever!

Cousins waiting for birthday cake :)

Tanz is trying to figure out what they are all doing with their bowls ?

Another St George hospital trip!

River made this right before this all happened!  
She picked out the pictures of the Savior and the sayings.





Silver and River

Daddy, Silver, Summer, River

Skipping rocks

Curtsies

River with Rick Schwartz - of the San Diego Zoo channel.  They have live cams in the zoo enclosures, and specials all about the zoo animals - with Rick in a lot of them as their handler.  They asked River to film with Rick about watching the zoo channel in her room at Ronald McDonald House and Primary's.  It was especially neat because River has been to the San Diego Zoo twice and especially loved the polar bears.  
Link to River's San Diego Zoo Clip:

Look up on You Tube:
San Diego Zoo Kids Channel Brings Healing to Children

Click here for Video:  San Diego Zoo Kids



Making Aunt Star's special applesauce pancakes




1 Nephi 3:7

And it came to pass that I, Nephi, said unto my father: I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them.

Song:  Laura Story:  Blessings

https://www.youtube.com/watch?v=1CSVqHcdhXQ

Lyrics:
We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise?

We pray for wisdom, Your voice to hear
And we cry in anger when we cannot feel you near
We doubt your goodness, we doubt your love
As if each promise from Your Word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise?

When friends betray us
When darkness seems to win, we know
That pain reminds this hearts,
That this is not, this is not our home.....
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise?

What if my greatest disappointments,
Or the aching of this life,
Is the revealing of a greater thirst this world can't satisfy.
What if trials of this life,
The rain, the storms, the hardest nights
Are your mercies in disguise?

Friday, January 16, 2015

Embolization

January found us back up to Primary Children's for Embolization - Doxyrubicin - the red devil was surgically placed in River's liver.  Chemo beads are inserted into the vein that then blocks that vein from blood flow.  Cancer grows very fast and so not having blood flow strangles it.  The chemo beads then slowly dissolve leaving the chemo right on the areas to be targeted.
The surgeon prepped us by saying that he would do the best he could to place the chemo in the vein that it needed to be in.  He also said that there was another area that he would try to get to to place the chemo but that it was behind the tumor and up near the diaphragm in a very tricky place...he would try.
The head surgeon on River's case - that will cut out the cancer from the lungs and the liver popped into the surgery to see how it was going.  Both the Surgeon and the Head Surgeon were SO excited to tell us the news!  The embolization went SO well!  They were able to place the chemo EXACTLY where it was needed - in both spots.
The surgeon came up to our room later that night to check on River and show us pictures of the veins in the liver.  He showed us before and after pictures that already showed a difference - in the 3 hours of surgery - that it was already working.
AND he showed us a possible vein in her liver.  A very abnormal vein that is usually not there.  It just so happens that this vein is in the Perfect Spot and feeds a sliver of the healthy part of the liver we are trying to save.  Shout for Joy!  This was a major obstacle in that they needed to find a good vein, and here it is!
This was a big hurdle to jump!  The Head Surgeon was very excited to find out about this abnormal vein and how well the chemo was placed as it least gives a possible treatment where there was not much hope before.
Tuesday River got Carboplatin chemo as well as doxyrubicin, Wednesday more doxy and Thursday more doxy still.  She has been surprisingly well for all of this!  Her nausea has been manageable with meds and we are very grateful to be out of the hospital.
AFP:  5,890.  Beginning of November was 21,000 and beginning of December was 19,000.  This was a great decrease that the oncologist was really happy about.  She told me all is going better than hoped for!
Plan from here:  February 2nd more scans to see where things are.
February 3rd:  Either Surgery for left lobe of lung or more chemo - depending on what scans show.
We went to pick up Silver from school!


Snowball fight with Paca


Sum Sums


More sweet summer!

Silver and River showing the rock they carved to look just like this picture in back of them.  


Dancing


Tanzi cleaning the floor.
Tanz LOVES to clean the floor - either with a swiffer or wipers.  


River being wheeled from surgery recovery to her room.  She was really light sensitive after waking up from surgery - the towel over her eyes helped a lot!  Love the polar bear - her favorite animal of them all.

Her newest addition to her clay nativity set she is making:  
Angel and donkey.

Monday, December 29, 2014

Christmas Happiness

I have really struggled with writing this update.  I want to stay positive and shout for joy about the progress we have made in decrease of cancer!!  However, there is a very real dose of realism that also accompanies this news that is hard to write in black and white.  It has been a very touching experience to have this blog and allow our friends, family and complete strangers to accompany us on this journey.  We all have been touched by River's spirit and her goodness, joy and peace that she has always possessed.  However it is also hard to be public about such an emotional time and raw tender emotion as a parent.  Thank you for all of the prayers, fasting and pulling together that you do with us.  

On with the good news!

CT and MRI scans show that lung nodules have decreased from about 20 to 8.  They have also all gotten smaller.  The biggest one was over 1 cm in diameter, and now the largest is 7 mm.  HOORAY!!  The 4 liver tumors have all shrunk – between 50 – 68%.  There are no new legions.  We feel like this is great progress.  Chemo and the shrinking of cancer has helped River to stand straighter and walk very well.  She has also been able to run around with sisters lately!!  The oncologist team  feels like overall the chemo has strengthened her!  She has also had considerably less pain the last month.  We feel incredibly blessed to have made such great progress.

However.... the surgeon feels like the progress has not been enough for surgery at this point.  She wanted to see the cancer completely out of the lungs.  It takes a million cancer cells before the legion can be detected by scans.  We hope there is no cancer small enough to not show up on scans.  We will do lung biopsy in the future to check what appears like healthy tissue to see if there is any sign of cancer.

We are ineligible for liver transplant because there is still cancer in the lungs.  And the cancer is still too much to do surgery to cut out the cancerous parts of the liver.
It wasn’t the answer that we wanted…the surgeon told us initially that the liver HAS to come out for survival... but now we are ineligible for transplant....heartbreak and tears all over again.  We were told straight out to make it a good Christmas as our odds are roughly 10% and our chemo doctor has not had a patient in our situation make it before.

BUT we are still hopeful and there are still options.  We will still continue to fight for the miracle.

We will inject the liver directly with chemo through embolization. They have saved out a round of doxyrubicin (red devil) from her treatment (you have a lifetime maximum you are able to take) to be able to put it directly into the part of the liver we hope to save.  To cut out a part of healthy liver to regenerate the surgeon needs to have a good artery going in and a good vein going out of the liver.  The cancer is in all 4 lobes of the liver.  And 3 of the lobes do not have good exit and entrance veins.  It looks like there is a chance that injecting chemo directly into the liver followed by more chemo can clear up that lobe of the liver enough for a surgery to remove the cancerous parts.

The chemo protocol we are following is for 3 months on Cisplatin and then possible surgery.  If surgery is not an option at that point there is a plan B portion – 3 more rounds (months) of chemo – a bit different than A to see if it reacts more.

We started this journey with stage 4.  We started with a lot of cancer in that little body.  It has made A LOT of improvement.  We are going to continue to fight!  The less cancer in the body – the greater the chemo works.  We are at a better place now than we were 4 months ago.  There is still hope for a miracle.  We will still continue to hope.

It has been a wonderful Christmas, full of many miracles big and small (if there are such things as small miracles!).  So many in the community have reached out with acts of kindness from putting up Christmas lights to presents to coming to sing.   We even went ice fishing as a family and had a great time.  River also went horse riding, crafts, and wants to learn to play the flute.  She is more chipper and active and happy than she has been in months and we've enjoyed every minute of it!  We are soaking up every minute of the laughs, giggles and playing with sisters!

River

Silver and River JUST getting together after a time apart!



Ronald McDonald Home hallway.  Our hallway.  Our home away from home.

Silver and Daddy riding the ferris wheel at Scheels



Wrapping presents together.  She must have said 20 times...oh, I just KNOW that Silver and Summer and Tanz are going to LOVE these!  She was SO excited to wrap up a gift she thought they would enjoy.

Summer


River and Silver

The Prima Ballerina of Ballet West paid us a visit and River got to dance with her to The Nutcracker.




Special.  very very special.  She was SO thoughtful, kind, and positive, upbeat, encouraging.



River trying out her toe shoes from the ballerina later.

WOW!  What a surprise greeted us!
Our house!!  

River Silver and Summer were so excited by the surprise of the north pole in our very yard!!


Contemplative moments

New Dresses

Christmas Morning


(This one somehow snuck in here, but it was so cute!  Playing monopoly in the hopsital.  The nurses wear these blue coveralls while handling the chemo.

Summer with a sheep!

Summer and Daddy

River

SIlver


Snow angels


I love, love, love this picture!

At Grandpa and Grandma's house



PacaMa telling a story about her childhood with all the grandkids.


Inventing a new Christmas Trivia Game
What are the 2 most famous snowmen?
Answer:  Frosty and Olaf!
Why don't seagulls go in the bay?
Answer:   Because they don't want to be BayGulls
:)  They had so much fun making up the questions!

Silver wanted to play Daddy's trumpet!
She and Summer had such natural ability to toot this horn!

Headed out for ice fishing!


River's snow heart




Shado Scott, Scotty and Judd.
Judd is the most photogenic kid!  Always adorable!

Summer and Daddy

Silver and River
River with Ducky snow sculpture inside tent

River and Daddy

Rio and Summer
LOVE the sunglasses



Tanz and her baby doll

Summer and Baby Doll



The soul would have no rainbow had the eye no tear
Hearts would gain no courage had the mind no fear

Faith would not grow mighty had no doubts been sown
Joy would fill no being had sadness not been known

Sunrise has no beauty without darkest night
Stars would never twinkle without fading light

Peace would fill no bosom had there been no strife
Time would serve no purpose without eternal life.
-Clive M Killpack



2 Nephi 5:27  "And it came to pass that we lived after the manner of happiness."