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!

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

Lung Surgery August 2018

River in ICU after Lung Surgery

April 2018 River's cancer tracer (AFP) started to rise. It had remained at 8 (normal) for close to 2 years!!  We have had the best time as a family enjoying River's energy, strength and IMMUNITY for 2 years!  No chemo was such a beautiful thing after close to 2 years of chemo.  

Kids earn beads for everything they go through in the hospital - surgery, tubes inserted, chemo rounds, CAT scans...there is a little turtle for ICU.  The turtle is River's favorite bead and I have teased her that she is only allowed to ever have one of those.  Well, she now has 2!

People asked if it was overwhelming and hard to face it all again?

We remembered the lessons from the first time:  God will provide in the moment that it is needed - perspective, ideas, hope, peace.  The Peace which passeth understanding.  We are in God's hands.  Miracles happen!  His Grace is Sufficient.  The deeper the need, the greater the grace.   Abundance - Gods blesses us in abundance.  

Yes, it was hard.  Very, Very Hard.  But the Tender Mercies and the Love and goodness surrounding us was greater.  As I was contemplating it all coming back the answer that kept coming was:  Eternity.  This is greater than the here and now.  Families are Forever.  Keep your focus on eternity.  What we do here is very important - the trials, experiences and spirit that we gain here will prepare us for the future.  

Surgery was 3 hours - she was under another hour ahead of that to place dye in the right spot.  Surgeon said all went well and that they got all that they needed to get.  They had to cut out more lung than they were planning.  

Her cancer tracer started climbing in April.  It was decided that the best thing would be to wait for it to grow big enough to find on scans.  It was kind of interesting this summer knowing cancer was there again, growing...But it was such a beautiful time of enjoying fully great health and exploring our beautiful world together.  Even with her playing Jane in Mary Poppins everything felt like it worked out so wonderfully with timing.  

L-R Mary Poppins, Jane (River) Michael and Bert

The first day of 3rd grade the teacher asked the kids to make goals.  One of River's goals was to act in a play.  2 weeks later we found stage 4 cancer.  4 years later she was Jane in Mary Poppins!  River LOVED acting.  I asked her if she was scared of being on stage infront of people?  No!  She says "I Just had FUN!" and she did!  She was so much fun to watch!  She owned the role.  

The Banks Family

Statue from the Park

They weren't sure how fast this cancer would grow - it could have exponentially grown.  It could have come back in the lung, liver, bone, or brain.  The liver would have been very serious meaning that the liver was producing more cancer.  This time around liver transplant was an option (it wasn't an option before because there was cancer in the lungs too).  We felt so blessed that it was in the lungs - that was our best case scenario.  It was most likely a cell left over from everything that has just been hanging around growing slowly.  

The spot is the cancer and the triangle around it is what they cut out.  Your right lung has 3 lobes and the spot was right where the 3 lobes come together - so surgery on all 3 lobes!  It was right by all the scar tissue from last time - so that made it tricky because the tissue was hard scar tissue instead of soft normal tissue.  

Right before going into surgery.  She was happy and ok with everything - even knowing how much recovery would hurt and how hard it would be she walked right into surgery with a big smile on her face.  This was her 3rd lung surgery and 8th total surgery.  

When she found out that cancer was coming back I asked her how she felt about it:

"I've done cancer once.  I can do it again!  At least we caught it when it was small."

On an especially hard day in the hospital I told her that I wished I could take it all away. 

 "Don't" she says.  "It's making me into the person that I am."

This time the cancer tracer was 90.  

When we started in 2014 it was 1,444,287.

Tender Mercy:  After ICU they transferred River up to the Oncology Floor because surgery recovery was full.  It was such a neat thing to be back with around the familiar faces of everyone we knew and loved.  Nurses, Techs, Child Life, Social workers, Coordinators, we were able to see and talk with many, many special people that I was shocked recognized River when they saw her.  This was 4 years ago - she was bald and super skinny as we fought hard to keep her above 40 pounds.  

That smile and twinkle in her eyes was still the same :) 

We LOVED being with the cancer kids again.  Those little bald heads have a special place in my heart.  It is so hard to watch what they go through - but how they go through it inspires me!

We decided it was a blessing to loose your hair with chemo.  The hair was a pain to keep combed out and washed.  When you are not feeling good with chemo - sick and in pain - it was a silver lining to not have to deal with it.

Back in Time:

River December 2014

December 2014:  We had done 4 months of heavy chemo and surgeries.  They told us to take her home and make it a good one because it would probably be her last.  We had kept her in a bubble away from germs.  They said now is the time to make memories.  

Oh, how deeply grateful I am for 4 years of memories!

Part of what they said would help more than anything is lung exercises.  She had a machine she would need to breathe as deeply as she could with.  Regularly.  OOOUUUUCH!  She also played the harmonica and recorder to practice breathing.  Here she is playing the harmonica with a straw - it took more resistance to blow through the straw plus it would play just one note at a time.  

Her hand on the right side of this picture is holding where the tube inserted into her side.  The rest was inside - draining the fluid out and the extra air that needed to come out.  

The liquid would drain into these boxes - she had 2 tubes.  This is the backside of the tubes.  We were joking that these were her little pets that she took everywhere with her on a leash.  So named her

"pets" and gave them faces :)

We met SO many wonderful new faces this time!

Here is River's Physical Therapist Brandi.  She was such a good fit for River.  River would push herself to do the exercises and say afterwards that she felt so good.  Exhausted but good.  

Brandi loves tennis and biking - two of River's favorites.  

Music Therapy was such a hit this time!

River has been teaching herself the ukulele at home, but Katie taught her how to put the chords and strumming together to play songs.  Here they are playing River's first song:  Edelweiss.  River played Edelweiss many times for nurses and other patients.  

We both loved this meetup!  This was the first person I met at Ronald McDonald House 4 years ago.  He checked me in and gave me a tour of the building, probably at like 2:00 in the morning after an excruciatingly exhausting day at the hospital with River.  I knew I needed to get better sleep than machine beeps and nurse checks in the middle of the night or hoping for one of the 4 parent rooms each night.  The Ronald McDonald House was such a blessing - but the greatest thing about it was the people there.  He told me that first night he was a cancer survivor and how he's watched other kids pull through.  He gave us perspective that only a cancer survivor can.  He gave us hope and a place to talk about what was going on to a person who understands.  

Every day in the beginning was touch and go and so many firsts were thrown our way:  Chemo, Surgeries, Catheters, G-Tube, Ports, PAIN, Pain Meds, Nausea, Nausea Meds, etc. etc. etc.  They just layered on top of each other.  

Add on to that Doctors advising seriously considering not doing chemo because she probably won't make it anyway and it would just make her sick and miserable for the end.  It was an emotionally tough time to watch your child suffer so much.  

We would go to the Ronald McDonald house in the late evenings and he would usually meet us in the kitchen and hear about our day and her journey.  He said we named her well.  River:  A force of nature!  

It reminds me of this quote:  “In the confrontation between the River and the rock, the River always wins, not through strength but by perseverance.”

This being able to verbalize what was going on was a very good thing.  His encouragement and perspective were so valuable.  It felt like we were on empty at the end of the day and meeting with him started filling that space of hope.  

It was neat for them to meet up as fellow warriors in the same battle. 

Speaking of fellow warriors:

River and Maya!

She is a girl from our home-town that is also going through cancer and chemo.  

We've been able to meet up with her in the hospital twice now.  

I love the similar smiles through it all - they have the same twinkle and spunk of going through all this.  Maya - you inspire me!  Thank you for letting us be a little part of your journey!

Happy New memories bringing back Happy Old Memories!

Oh, the Sister Missionaries meant the world to us 4 years ago!  River has always wanted to be a missionary.  When she was so sick we requested the sisters to come visit.  Visit they did!  They brought the most wonderful light and spirit with them.  They were able to visit for several months while at the hospital and Ronald McDonald House.  Just writing about this brings on the happy tears.  We were able to meet up with Sister Kent at the hospital and then in October again for her wedding!

L-R Silver, River, Joanne, Summer, Tanzi

Sister Reed

I LOVE all the girls in white.

When we got married, Colt and I set our family motto as 

Together in White

This recovery was tough.  Every day the story was X-ray in the morning, if it shows good, pull the tubes and go home in the afternoon.  There was too much air in the space between the lung and the chest wall.  This meant air was leaking from the lungs into the chest cavity.  The lung usually sticks to the chest wall, but they removed so much of her lung, plus the leaking...it was putting pressure on that lung so breathing was hard.  Tubes were left in several days longer than originally planned for.  I was impressed with how River handled the news every day, that no you are not going home today, and tubes still need to stay in.  She took it in stride saying she would rather go home knowing all was good than risk going home too early and having a collapsed lung later on.  

She pushed herself to do all the exercises and walking.  Here she is playing air hockey.  (The last day when tubes were removed and we were waiting to see if she was okay to go home)

It seemed that one day would be great and maybe pushed it too hard - the next would be painful and hard.  It felt like one day appetite was back and good eating and movement and the next back to forcing herself to eat every bite.  

She says "I'm never bored in the hospital"  They have all sorts of crafts, legos, and games.  The orbeez - were new to us this time - water beads that start tiny and hard and soak up water - they become soft marble size beads.  They were fun - they can even be shrunk down to their original size and do it all again. She did experiments with them - will they shrink faster in the sun with the air blowing on them?  I'll bet the blacks shrunk faster than the whites because they absorbed the sun instead of reflecting it.  

This time around River's two favorite shows were I Love Lucy and Dr. Quinn Medicine Woman.  

Church at Primary Children's Hospital is beyond words to describe how special it is.  With all the parents and children and loved ones going through a tough time together...it is a spiritual conduit to heaven.  We were there this time for two Sundays.  The first Sunday I was crying through the entire thing and couldn't sing the songs - I felt how special everyone's service to me was to sing the songs so I could just sit and listen and feel of their testimonies as the tears flowed freely.  

We got to walk out of the hospital on September 2nd.  

We walked into Primary Children's for the first time on September 2, 2014.  

How fitting.  

Coming Home

All together Again.

Live for Eternity.  

Our Homeschool Language Arts Program

Home school has been the biggest blessing!  It is wonderful and hard and beautiful and tough.  As with anything worthwhile, it takes a lot of effort and work.  But that is what makes it beautiful!

At the end of the day I am exhausted and happy. I feel like the Lord is blessing us every day with help beyond our own abilities.  Patience, Peace, Love, the Spirit and ideas that flow of how to teach and understand.  We pray that the Spirit will be with us in the day to enlighten our minds and when frustrations pop up we say "This is not about ____________(math or grammar or spelling) this is about faith.  This is about character and learning to go through life with a good attitude and great work ethic.  This is about learning to love learning.  

We began homeschooling when River was going through chemo and had NO immunity.  0 protection against germs.  This has turned out to be such a Silver Lining and MAJOR blessing.  River went to the first 2 weeks of 3rd grade in 2014 before we found cancer and major surgeries and chemo.  We sent her back to school for the first 2 months of 4th grade September 2015.  This is River the day before Halloween 2015 trying on her costume and her fantastic wig!

Halloween afternoon landed her in the ER with a fever.  I teased her that she just needed to pretend to be a nurse not actually go to the hospital and be with nurses and doctors.  :)  

That progressed into a nasty cough that all were monitoring closely hoping it wouldn't turn into pneumonia.  She was in bed majorly scarily sick for a month.  I felt inspired to homeschool and asked a dear friend what she did for homeschool and got some wonderful suggestions for Math U See and The Family School from Latterday Learning. 

The one that overwhelmed me the most was Language Arts.  Where to start?  What to do?  This all came at me so fast and I wanted to do a good job homeschooling.  This fell into my lap as I was praying and contemplating:

This program really has been Good and Beautiful for our family.  I have enjoyed teaching reading to our girls and have gotten so much fulfillment out of seeing it click in their minds.  They have blossomed and LOVE reading.  They can often be found 1st thing in the morning with books side by side reading and sharing what they are learning with each other. 

Silver is sitting on the heater and Summer is in front of its heat 

 Reading all throughout the day and late into the night are every day tender mercies.  I believe if you know how to read and have a love of learning you can learn anything.  

The relationships with our girls has been wonderful.  I sit down with them one on one.  I LOVE the questions The Good and the Beautiful curriculum brings up and the things that we ponder as we move through the books.  It speaks of God and of character - helping them truly internalize a loving Heavenly Father and his beautiful world he created for us.  Loving goodness and family is another major theme.  

The Good and Beautiful language arts covers:

• Phonics and Reading
• Spelling
• Grammar and Punctuation
• Literature
• Art Appreciation
• Writing
• Geography
• Handwriting

Seriously!! It's all right here!

All things Language.  And Art!  We have LOVED the art appreciation.  One time I only had 5 minutes left of the lesson and the art appreciation was to write a story about what could be happening in the picture.  I showed Silver the picture how pretty it was and then moved on going to come back to it the next day.  Silver says "Wait!  Aren't we going to talk about the picture???"  I asked her if she liked doing that?  YES!  I said tomorrow we get to talk about it and write a story about it.  "OH!  That's even BETTER!"  I love it!

I am so excited to be starting level 4.  Levels K-3 are done mostly with mom and we work through it together.  Levels 4+ are mostly self-directed.  They do one lesson in language arts and one in art.  It is full color and the projects look fantastic.  I love the idea of River having a set assigned amount a day that she can see what she needs to accomplish.  

We have done this for just coming up on two years now.  We have done levels K, 1, 2, 3 and starting 4 the end of the month!  Grammar and all of Langauage Arts is my personal biggest struggle! 

Give me math!  History YES!  Science Absolutely!

Grammar - I'd really rather not.  Spelling...overwhelming!

HOWEVER with this program it is open and go!  You open to the place you left off and work through the book.  It is presented in color with a lot of variety in their activities and worksheets.  

We LOVE the readers!  Even if you don't homeschool or are looking for a good book for them to read at their level - these are compilation of stories that are wholesome and enjoyable!  The girls LOVE reading them and have fun when one reads the book and the other remembers the story they talk about it.

They posed for the 1st picture and then I came back 20 minutes later and they were all reading their readers :)  THE BEST!

The first year I wanted to love The Good and the Beautiful.  I wanted to see it as beautiful but I got caught up in how advanced it is and how hard teaching grammar is for me.  My attitude was contagious and River didn't love it either.  The second year I went searching for something as a better fit for our family.  The Good and the Beautiful team emailed me back explaining why grammar is so important and why they teach it the way that they do.  I found the Good and the Beautiful Community group on Facebook that answers questions I have and gives great tips on teaching and helping them understand.  

I found that this is something I (unfortunately) couldn't avoid and needed to teach.

After a MAJOR attitude adjustment and learning that this is presented in a wonderful way I gave the 2nd year a go.  I decided to learn right alongside them.  It has been a blessing!   I found that this is really my dream curriculum - this would be what I would create if I could design it myself.  I decided to trust the process and mostly go for the character and goodness it inspires with language arts on the side.  

I have seen vocabulary increase, reading skyrocket and spelling improvement!  River really had no spelling for years in the hospital and afterwards in my overwhelmed state and developed some really bad habits when it came to spelling.  She loves to write but spelling was not even attempted.  The Good and the Beautiful teaches spelling with lists of words to memorize and learn but also sprinkled throughout the course is patterns of spelling that are reviewed enough to learn the pattern without being too overwhelming.  I have seen a great improvement.  

Check out The Good and the Beautiful at 

http://www.jennyphillips.com/course/language-arts-literature/

A wonderful part about it is levels 1-5 are available as free downloads. 

They are also extremely affordable to purchase too -  I find that it is cheaper to order through them  - I tried printing it the first year on my own and yes, much cheaper to go through them. They have done an excellent job and keeping the cost down.  

One thing that is encouraged is writing thank you cards.  We have MUCH to be thankful for and MANY to thank and this has been such a fun thing to show our gratitude:

Another thing I LOVE is their book list!

I want to only have my kids fill their mind with wholesome, good, character inspiring literature.  With so much filth, disrespect and attitudes today I only want good going into their minds.  But I don't have the time to preview books before they read them.  Jenny Phillips has a book list that I know that everything in it meets my standards - 

1. Avoids All Uses of Profanity and Taking God's Name in Vain

2. Avoids Violence Used for Entertainment or Shock Value or That Is Graphic

3. Does Not Weaken Family, Faith, or Christ‐Like Behavior

• Portrays strong families, motherhood, and fatherhood as desirable and noble. Portrays parents as valuable, involved, and helpful

• Promotes respect and appreciation for teachers, peers, siblings, and extended family

• Portrays faith in God as desirable and noble

• Portrays learning and education as desirable and noble

• Does not portray bad behavior or weak character traits as humorous, entertaining, normal, or acceptable (laziness, negativity, flippant attitude, disrespect, cruelty, violence, gossip, pride, vanity, self‐centeredness, revenge, greed, worldliness, unkindness, immodesty, immorality, lack of depth of character)

Here is a link to the list:

http://www.jennyphillips.com/good-beautiful-book-list/

It is usually $5 but it is being offered until November 11, 2017 for free!

We have founded "Friend School" with the girls reading out loud to Tanzi and friends and cousins

They read the "Friend" magazine and other picture books so that they practice reading out loud and the youngers can listen to the books.  It has been great!

The Good and the Beautiful also offers courses in History, Science, Nature Notebooks, and Typing.  

River has LOVED the typing course too.  It has watercolor pictures throughout and is presented in a way that is one concept building on another that she has seen steady progress with.  

After 2  years of homeschool I  have finally found a great way that works well for us to organize our homeschool materials.  These are 31 brand bags and I love how they don't have a top so they can throw binders in standing up and it holds everything.  Pretty roomy - they have 2 good size mesh pockets on either end and 5 total pockets on the sides.  We hold our reading stuff, math books, a white board, stickers and a box with pencils, dry erase markers, scissors, etc.  

Then when we are outside, inside, over to the kitchen counter, the couch or the bedroom floor...or in a crib :) it comes with us and we have everything we need without getting up.  

(Silver doing spelling in Ridge's crib)

 We put it on a bookshelf at the end of the day.  

Thank you Jenny Phillips and Team for a wonderful addition to our life!

Hoping your days are filled with good and beautiful things!