Good News, Answers, and a Plan

Howdy Y'all!

Last time I wrote we were in a season of unknowns.  One of the major things I’ve learned through this cancer journey is “This too shall pass” or in scripture language “And it came to pass”.  Everything will pass.  Just hold on for the light, for the peace, for the answers.  Hold on for time to pass.  It might be a short time...it might be a long time.  I have faith it is in the Lord’s hands.  Answers will come...sometimes not until Heaven.  But I feel for sure that they will come.  It gives me a lot of security during the hard times to remember Our Heavenly Father loves us, and has a plan.

I love Nephi’s testimony:
“I know that he loveth his children; nevertheless, I do not know the meaning of all things.”
1 Nephi 11:17

And from my favorite apostle of all time:
Neal A Maxwell:
“Faith in God includes Faith in His Timing.”
“Faith also includes trust in God’s timing.”

We feel so much gratitude as we have received many answers lately -

First of all, River’s pain has significantly decreased.  She still lives with daily pain and discomfort - and often it takes her down to bed - but overall not nearly to the extent that it was.  The doctor that put her inpatient at Dixie Hospital prescribed a nerve med back in October.  End of November, River had a better day...and then another.   I kept waiting for the crash...but it never came!  Her good day turned into a good week.  Researching the new med said that it could take about 6 weeks to start working well.  It was the 6 week mark when she had a decrease in pain.  So much gratitude that she is able to do many of the things she previously enjoyed!  She still tires easily and is slowed down from the pain, but has been able to play games, go to activities and even go hunting again!

Beginning of December her AFP (cancer tracer) got over 1,000. New scans showed that the reason why the cancer was not seen on previous scans is because there were 2 spots in her right lung - each one needs to be a million cells before it can be seen on the scans.  Because there were 2 of them, each one was not big enough to be seen.

It was so good to meet with her Oncologist and Surgeon in the same room.  They were like a breath of fresh air to sit with them and hear their thoughts and observations.

Here are our Options:

1. Immunotherapy in Houston, Texas at Texas Children's Hospital. This is an experimental clinical FDA trial.  The immunotherapy has been quite successful in Leukemia and Lymphoma cancers, the experimental part is in solid tumors, like River’s.  They tested samples from her tumor from June and results showed her tumor has a protein that the TCells can then recognize and attack.  Not all tumors have this protein, but this is what is needed for the immunotherapy to target.

90 MLs is A LOT of Blood!

They took 90mls of blood that we shipped to Houston.  It took them 5 weeks to test, genetically alter, and multiply the TCells.   They are injecting a virus into the Tcells that can then target the protein of her tumor.  They tested the cells to make sure they would kill her cancer, and also to make sure they wouldn't target other healthy cells in her body. 

We are in Houston now.   Last week River had 3 days of chemotherapy to kill her own immunity before they inject the TCells.  Then a rest day that she was completely wiped out and sick.
Friday they injected her Tcells back into her.  They monitored her closely for several hours after injection for any adverse reaction or side-effects. She has been extremely tired and very sick and pale lately as her immunity is gone. This time we won’t stimulate new immunity as it needs to stay low for TCells to be able to do their job.

River's surgeon is so excited we get to work with the cancer doctors here - there are 2 centers for River’s specific pediatric cancer - one is in Cincinatti and the other is Houston.  I miss many things about Primary Children’s that I took for granted - but there are also wonderful things about TCH.  They have a library!

Paw Patrol - Ridge's favorite! 

He was so happy for this lift-the-flap book!

It’s the little things - finding JOY in the Journey!

We took all of us the first day to meet the doctors and see the hospital - I feel its one of the many blessings of homeschool that we can bring our kids along and part of their education is real-life, in the trenches talking and meeting people and seeing all sorts of new things.

River in Houston - Right Before Chemo starts

We are anticipating to be in Texas for 6 weeks for her therapy.

We are SO blessed to have a home at the Project Joy and Hope facility!  Our family is too big to be able to go to the Ronald McDonald House here (4 max).  It took a huge weight off our shoulders when we got the green light we could live here during River's treatments.

It and has been such a lovely retreat at the end of our 3 days driving to get here and at the end of Loooong hospital days.  There is a basketball hoop on a large cement pad, sidewalks for riding scooters on and even a park for the families here!  It's been so nice for our rambunctious kids to be able to run around and play!  The neat thing about all being together is that even if River doesn't feel great, she can be around her sisters and brother and their energy and giggles are truly special. 

River and Ridge enjoying the beautiful bay view. 

We have loved being able to connect more as a family and put all the craziness of our life the past few months away and just focus on the important things.  I am humbled to be the recipient of such kindness of amazing people that have worked so hard to put these resources together and available for families to be able to stay together during their children’s treatment.  Words cannot being to say thank you enough.  It has kept our family together during this time - a priceless gift!

If pictures are worth a thousand words - here might be a small token of how I feel!  LoL

We have loved getting to know a different part of the country ~ 

Houston has GIGANTIC apples!  Lol

It is WARM here.  60s and 70s. IN JANUARY!!

If the immunotherapy doesn’t take out the cancer we have a few more options:
*Molecular targeting - we started the process of analyzing river’s tumor from June to see if her specific cancer has an abnormality or target that matches one of the medicines recently developed for several different targets. There is new and very promising research on that.  Her surgeon has an aunt that had lung cancer that wasn’t responding to any other treatments. She was a match for one of the medications and it melted the tumor away.

*Chemo is still an option on the table. This cancer is most likely a remnant from her previous cancer, so that means it wasn’t taken out by the previous chemo she has received. There are lots of different types of chemo.

*Surgery. The two spots of her cancer are in a tricky spot for surgery. We are grateful these are operable if we get to the 4th option, but if surgery is needed it would take her whole right lung because of the location.

We are feeling grateful to have so many options, to be part of this clinical trial, to be all together as a family and that there are amazing family, friends and community both in Kanab/Fredonia and Houston!  Many many thanks for all who have helped our family!