Lota’s tumor returned aggressively late February. Tumor markers (that determine whether Lota should be undergoing chemo treatment) came back elevated - meaning they were above normal range. This meant, Lota must prepare to undergo chemotherapy. Lota had surgery for placement of a port - a central line for him to receive chemo. Two weeks later we tested again and his tumor markers came back normal. This was puzzling to doctors, so we tested again and his tumor markers came back even lower than the second test results. This was extremely mind-bogging to our medical team. According to them, tumor markers normally do not continue to drop with each test.
Did someone make a mistake at the lab or did we just witness a miracle?
A week later oncologists confirmed that we should hold off on chemotherapy. So we move forward with another craniotomy for surgical removal of the tumor on April1st. This was Lota’s fourth brain surgery in six months. Our neurosurgeon - Dr. Kestle entered the brain through the frontal lope area and was able to remove about 80% of the tumor. Lota’s tumor is located in the pineal area of the brain - making it extremely difficult for doctors to reach it. The surgery left Lota with a left eye that can hardly converge, track or focus. He had also lost some strength on his left side. He struggled with processing, remembering and solving simple word problems. Lota spent two weeks at the hospital recovering. He received inpatient physical, speech and occupational therapy. He continued physical and speech therapy once released from the hospital. We later learned that he also needed vision therapy and that too was added to his outpatient schedule.
Lota’s passion for running and will to fight touched so many people around the globe. Many of them sent Lota and our family messages of hope, encouragement and love. The uplifting messages and continued support from complete strangers added more fuel to our fire. Knowing that so many out there whom we’ve never met are willing to kneel in prayer for us brought so much strength, humility and hope for us to continue on pushing forward. By August we learned again that the tumor is growing aggressively AGAIN and doctors are now looking at another surgery.
Lota took the news hard and he struggled to cope. His anxiety was getting worst and he wasn’t sleeping at night. Lota started to change from our sweet boy to an aggressive, angry kid. In September we started seeking mental help for Lota and our family. It has been one of the best thing we have ever done for our family especially Lota. Today, Lota looks forward to seeing our therapist each week. He is able to talk about his feelings more openly and we as a family are also learning new ways to communicate using words that soften the heart and open the mind.
Words are powerful. They can heal or they can kill. Choose wisely.
While we were waiting to see what option we were to take next for Lota I started connecting with a wonderful woman whose son (Gavin) has been fighting an aggressive mature teratoma also for about four years now. Gavin’s is the first child in the nation to undergo a treatment called MRI laser ablation. During our first phone conversation, she mentioned that her son underwent chemo and radiation and both treatment did not cure Gavin's brain tumor. As a matter of fact chemo made Gavin's tumor grew even more aggressive. My heart was bounding when I heard this. I was grateful we didn't put Lota through all that only to find out that chemo and radiation would not work of him, but my heart was also sadden for Gavin and everything his poor body has gone through.
Keith and Lota flew out in Minnessota to meet with Gavin’s doctor. Dr. P confirmed that Lota and Gavin’s tumors have the exact tissue samples. It was hearing that news that I realized that no one made a mistake at the lab back in March but that Lota had a miracle. A wonderful miracle in deed. I was humbled by this revelation and grateful for another tender mercy of the Lord.
We also learnt that the University of Utah hospital has the same laser treatment that Gavin has been using. They just have never used it on a child with a mature teratoma before. On November 19th, Lota under Dr. Bollo and Dr. Kestle’s watchful eyes had an MRI laser ablation surgery at the University of Utah Hospital. It was a leap of faith for all of us. Lota also had his port removed during this hospital stay. We will know how well the laser ablation worked - 3 to 6 months from day of operation.
Lota is recovering well. He is a bit shaky from all the swelling in his brain but he is doing well. He takes zoloft to help with his anxiety and melatonin to help him sleep at night. He continues to amaze us everyday with his faith in his Heavenly Father and Savior Jesus Christ. He continues to teach us to speak softly in tone and in words; to put more effort in mastering the art of patience with each other. It hasn’t been easy especially for this Mama, but each day is a new day to try again.
Lota’s strength has been the pilar of light in our home. He has taught us to never cease to pray even when our hearts are filled with anger and hurt. He has taught us to pray aloud, even when there are people in the same room as us.
We take it one day at a time. We count our blessings when darkness seems to engulf us all.
Every warrior does not fight alone, for the power of a tribe is stronger than one man team. Surrounding Lota are five other very strong Spirits God entrusted us with.
During one conversation, Keith and I agreed that we chose our tribe well.
Sina is a leader. She’s a jokster and is not easily offended. She came to us built tough both in spirit and in body. We are so grateful for her strength and love for her family.
Nani is our peace keeper, a giver and a compassionate soul. She would be the first to volunteer to help around the house. She has a heart of gold and she is built tough too; a trail runner with Lota and Dad.
Tai is our artist. Through pencil and bright colors she is able to bring comfort, love and happiness to others. She is quiet but very observant. She is quick to find a way to comfort a crying sibling. She uses her artwork to cheer friends up at school also.
Lota is our lighthouse during the dark stormy nights. His will to fight each day motivates us to keep on keeping on. He has been blessed with wisdom. Compassion leads his steps and Faith lights his way. He is the wise old soul of our tribe.
Sefa is our cuddly teddy bear. This boy wears his heart on his sleeves. We have caught him several times praying quietly in the backyard, in the corner of the family room and in his room for his only brother. He has shed many tears for Lota. He worries about Lota every day. He wants to play football for Lota. He loves deeply. Recently during a trip to the store, he looked up at me and said “Mom, we will do everything we can so Lota stays alive with us for a very long time right?” I looked into his little brown eyes and my heart broke into a million pieces. I can tell that the little wheels in his head are turning. He is thinking about losing his only brother. He was refusing to accept such a thought. That is why he is asking me for reassurance. I got down and hugged him “Yes Sefa. Yes we will”.
Tifa is our Princess Warrior. She is fearless, full of life and exhaustingly happy. Her passion for life, for simple things, for music, for dancing, for debating and for makeup tutorial makes this journey hilarious, crazy, exhaustingly exciting and absolutely worth it.
Keith continues to run with the kids. He has shown so much strength, patience and perseverance through all the trials he's been dealt this year. I couldn’t ask for a better father for our children. He is excited to help raise money for the Tyler Robinson Foundation this year by running several ultra races. The Tyler Robinson Foundation has been very helpful to our family during this journey.
Rowena just got called to be a teacher in Relief Society. She is excited about learning more about her Savior as she prepares her lessons. She is learning to embrace the changes this journey is bringing and be open to things she never was before, like Nani having short hair and having a lizard in the house. She loves her gym time and learning more about healthy living and fitness.
We are grateful for the trials of this year. They have made us grow stronger in faith and nearer to our Savior Jesus Christ. We have witness his tender mercies in our lives. We have felt the power of His presence in our home. We know He lives. We know He knows each of us well. We know He will always be our advocate to the Father. We know all these things because of the Christ-like love we have received from so many of you. You are a big part our Tribe.
We as a family want to say Thank You for the kindness you have all shown us this year. We are deeply humbled by your generosity and love. We feel very blessed and very lucky to have you all in our lives. We also want to take this time to apologize for anything we may have done that may have caused any of you to feel hurt. Sometimes we act or speak too soon without thinking. May the mistakes of 2015 stay with 2015.
May the Spirit of our loving Heavenly Father continues to fill your hearts and homes with Peace, Love, Faith, Hope and Charity. May He bless each of you and your families. We are beyond grateful for your Christ-like love.
We look forward to 2016 and the challenges and blessings it brings.
May it bring you joy, success, and tremendous growth.
Love, The Ward Family.
