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.

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."