Brain Surgery A new chapter in our journey

Our world has changed. Drastically.
Friday April 3rd was the date we’ve been looking forward to for weeks as the day we would head home from Texas!!  Round 2 was officially finished on the 3rd, so we were ready to pack and finally head back to Utah!  For her to get sick enough for her to be admitted inpatient in the hospital April 2nd made it all the harder because in all of our minds we were done!!

April 2nd River and I came to the hospital for her last clinic visit, labs and CT scan. She had been throwing up for days and was really nauseous with migraines. CT scan showed an inflammation in her intestines which everyone thought it was a virus and would just run it’s course.

River was very weak and frail. And the detached and emotional state she was in we thought was a side effect of the medication she was receiving to try to control the throw up and nausea. Constant migraines could be explained by the dehydration.  And of course the abdominal pain needed to tag along too.

As I was helping River in the bathroom she collapsed. I was holding onto her so she didn’t hit her head. After that she went farther downhill. CT scan showed a large mass in her brain. Follow up MRI showed it was a tumor that was bleeding and putting a lot of pressure on her brain. It also found around 11 more smaller spots of cancer.

Colt and I then have had a full 2 days of hard conversations, asking heartbreaking questions and difficult decisions. We feel so deeply blessed to have amazing teams both at Texas children’s and Primary Children’s in SLC with drs from many different disciplines, including oncology and neurosurgery.  

We decided to do brain surgery yesterday to remove the largest tumor and hopefully relieve a lot of that pressure and side effects of that. 

The location that it is in affects verbal ability.  She was  mostly communicating with gentle head nods and shakes. Usually the words were so quiet or confused that it’s hard to make it out.  She was sleeping most of the time under the different medications to control her nausea.  The last 3 days she has been awake most of the time, probably from the steroids used to decrease the swelling. She  has been much more awake, more able to communicate with words.   But with more awareness comes more pain.

It reminds me of the scripture on opposition -  For if they never should have ​​​bitter​ they could not know the sweet — the hospital is the worst of times....and the times when I feel very close to God and so grateful for River and her life.  I see the best in people. Everyone around me is so compassionate and gives River the best of care.

With Covid only one parent can come to the hospital. Colt can’t even swap me out or come visit her. I’m the only one cleared by security to be here. The hospital is the very last place I want River to be right now with Covid-19... But how profoundly grateful I am that this is an option, this was literally life and death for her. The hospital is understaffed right now. I am so amazed by the doctors and nurses that are working so hard with both all the normal hospital stays and all the covid-19 concerns. To come take care of these kids is a special thing to be the recipient of such compassion.

 Colt was given a special exception to come to the hospital to see her before the surgery and give her a priesthood blessing. It was such a beautiful time.  Times like this the veil gets pretty thin.  We had a rare window when she was able to communicate with us. We were able to let her know they found the reason for her headaches and that the surgery would try to help with that pressure. We were able to understand her words and she understood us as well as she could.  We couldn't explain everything to her but enough for now and more when she is able.   I’ll be forever grateful for that sweet time we had together.

And now to the hardest news of all. This is extremely rare that her liver cancer has spread to the brain. This liver cancer in her brain doesn’t respond well to treatment. We’ve now moved from curative treatments to quality of life and hopefully to be able to spend some time with sisters and Ridge.

One breath. One step. One decision at a time.  These decisions will be taken one at a time depending on how she is doing and what we feel the next step should be.
River had brain surgery yesterday. It went smoothly. She was stable during the surgery. She took a long time waking up but she is able to move everything and communicate!  While still limited in ability to speak it is much more than before. They felt that they were able to get one big tumor. 

I was only able to watch a few minutes of general conference this Sunday.  I was able to catch a snippet of Elder Holland’s talk in between CT, MRI and Drs giving us the news of the tumor. It was a whirlwind.  His talk touched my soul deeply. He spoke of truth, love and hope. I am a witness that this is an Apostle of Jesus Christ. Everything he spoke about the spirit has witnessed to my spirit is true. Priesthood - the power and authority to act in the name of God is upon the Earth. And because of that power and authority Temples. Holy houses of God to seal families forever. The church of Jesus Christ of Latter-Day Saints is the restored gospel of Jesus Christ and has continuing revelation today. I invite you to come, listen to an apostles words:

https://www.churchofjesuschrist.org/general-conference/2020/04/media/6147245413001?lang=eng

We have cried many tears. It hurts so, so, so much because we love her so much. But we are peaceful knowing whose hands she is in and having complete trust in Christ’s ability to comfort and heal hearts. Complete trust in God’s plan. God is our loving Heavenly Father.  The weather since Sunday has matched my tears. There are rain clouds and thick fog. The raindrops are running down the window as heaven is crying with us.
Many people have mentioned our faith and how we can come through this.  We have a sure foundation in our faith. An anchor to our souls in this awful storm.

Helaman 5:12
And now, my sons, remember, remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.

Come to Christ. He will heal your broken heart.   I have missed Colt’s presence, but have not felt alone. There is an unseen strength from heaven and the Grace of Christ. We talked with the kids starting and ending our heart to heart by singing “families can be together forever” We shed many many tears and along with the heartbreak felt peace and comfort.

Ridge was watching all of us cry and out of the blue: “Rivvy be okay. Rivvy see Jesus in the hospital.”  He and River have a special bond.  "out of the mouth of babes..."

I asked Colt before we separated and it would be just me caring for River around the clock how am I going to do brain surgery recovery without him?
He answered “love”
Just love her. 

It all comes down to love
Thank you to all our family and friends who love River so much. Thank you for your prayers and your thoughts. I would love you to share with us scriptures and thoughts that lead to God and hope. The scriptures from ancient prophets and talks from modern apostles and prophets have helped us feel close to heaven at this time.
What a special time of holding her hand. Rubbing her feet. Looking in her eyes. 

In the end.. It really is all about love...

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