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.
