REFLECTING ON 2015. WELCOME 2016.

As another year comes to an end, we are also given the opportunity to reflect on our journey throughout the year.  2015 was a year of trials and blessings, doubts and miracles and above all a year of tremendous growth in faith for our family.

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.

The overwhelming joy of the Christmas Spirit.

The overwhelming joy of gratitude fills my heart today. Words are never enough to say Thank you to each and everyone of you that have helped and supported our family during this journey.  We are so lucky and blessed to be loved by so many.  We have experience over and over again the true feeling of Christ-like love this whole year.  I know that is why Keith came home a couple of months ago, and suggested that instead of spending money on christmas presents for each other this year, we should spend that money on gifts for the little warriors at the Neuro-Trauma unit at Primary Children.  The kids loved the idea and we started saving for it.  Last month, while Lota was at UNI, Mrs. Taylor (Lota's teacher) approached me about doing something special for Lota.  She said her class really wants to do something special but they didn't know what or how. 

I told Mrs. Taylor about our family Christmas service project we are doing this year - donating christmas gifts to Primary Children. She was so excited and she wanted her whole class to join us. Lota’s classmates and their parents embraced the idea. Some faculty members also brought donations.  One runner friend of Lota's even sent gifts through the mail that her grandson helped her picked out for our family to donate. These acts of kindness are just a few examples of the many kindness we’ve received this year. 

Yesterday the kids woke up early to wrapped boxes to put the gifts in.  They were very excited. 

Once everything and everyone was ready we made the drive down to Primary to make the delivery.  There wasn’t enough room in our Yukon, so each child had to hold their box on their lap the whole way.  It was a tight squeeze but no one complained. We sang christmas songs with an occasional break for a little hip-hop and R&B to keep Daddy awake at the wheel :o). 

At the hospital we were greeted by the beautiful Katherine, social worker of the Neuro-Trauma unit and a member of the Primary Children Hospital Foundation.  Lota was our spokeperson.  He thank Katherine for everything Primary did for him and he wished her a Merry Christmas.  They hugged.  



We visited a little longer and then we said good-bye.  As I got in the car, I noticed Tai, my artistic, quiet and loving 10 year old sitting with her head down.  I can see she is crying.  I can tell she was trying really hard to stop it; to hide it. But the tears kept coming. It was out of her control. Her Dad and I asked her why she was crying. She mumbled "I don't know”. 

I asked her whether she’s crying because she’s happy or sad or confused. With a little titter she shyly admitted "I really don't know”. 

It was that moment that it hit Keith and I.  Our sweet Tai was experiencing the true magic of Christmas; her tears are tears of joy - the overwhelming joy we get when we give selflessly. Both Keith and I held her and told her that what she was feeling was the overwhelming joy of giving, of putting other’s need before our own.  We told her that she was experiencing the real magic of Christmas - The Christmas Spirit. 

She smiled shyly and nodded.

That was a powerful moment to experience as a parent.  

Our whole family want to say Thank you to each and everyone of you that have made a difference in our lives this year.  Thank you for kneeling in prayers for our family especially our Lota. Thank you for the many acts of kindness you have done for us - from encouraging messages, to caring for our other kids, to cutting our grass all summer long, the generous financial help you sent our way, to gifts and the list goes on.  Please know that every act of kindness you have done for our family, whether big or small has made a difference with our fight.  

This journey has been a rollercoaster of emotions. But with hardship comes strength, resilience and perseverance. We will continue to fight harder and stronger because we have hope and we know God is only a prayer away.  We pray that each of you get to feel the Christ-like love we are feeling today.  We wish this overwhelming joy we feel for each one of you and everyone around the world.  

From our Family to Yours - Merry Christmas and a Happy and Safe 2016.  

God Bless.

PS: Lota is recovering well.  He is starting to build up his endurance by running on the treadmill here at home.  He can't wait to get back on the trail again.  

Another year older and a life lesson.

On October 7th, 2006, Keith and I welcomed our first son and fourth child into the world.  We named him Lotatoa - meaning Our Warrior in my native language - Samoan. We were beyond excited.  Keith an only child - couldn’t wait to share his love for fast cars, football, baseball and the outdoors with his boy.  I on the other hand was excited for hotwheel cars, cute little boy sweaters and having a little boy to love.  I pictured Lota playing rugby like my brothers did growing up. But the best part of it all, was knowing that we have been blessed with a son to carry on the family name.   

Lota was Daddy’s little shadow from the moment he started walking.  He loves helping his Dad with yard work, fixing up things in the house and his favorite - working on cars with his Dad.  They went on their first father and son camping trip when Lota was only three years old.  Lota had so much fun that "Father & Son Camp out - No Girls Allowed" is now a summer tradition for Keith and the boys.  And once Lota discovered the Fast & Furious movies, he was hooked. I remember telling him that I did not like him watching that movie because of all the half naked girls.  His answer was "I don't look at the girls.  I only look at the fast cars". Smart kid! I knew there was no arguing this with Lota and so I asked that he and Daddy uses the fast forward buttons for those scenes. Keith was quick to let me know he got it.  

For seven years Lota was our perfectly normal little boy.  He loved fast cars, the outdoors, football, playing with little brother, being outside for hours, playing in the lake and doing everything a little boy loves to do.  

But 10 days after we celebrated Lota’s 8th birthday (last year) - everything changed. 

Lota was experiencing headaches in the morning and night.  The headaches disappear after a root canal. He would also vomit unexpectedly and then feel totally fine afterwards. He was playing football at the time and he went from playing the whole game to standing on the sideline. He was not tackling like he used to.  He told me he can’t see his opponents.  I thought he was just scared because he was playing some really big kids. Lota was also sleeping A LOT.  He would go to school, come home and fall asleep on the couch till the next morning.  Keith and I felt he was just exhausted from football practice all week.  We also noticed he had gotten taller, so we assumed he was growing too. When Lota did not pass the school eye screening, I decided it was time to get him to an eye doctor.  The eye exam that day led to an eye specialist visit an hour later, then to the ER for an MRI which revealed a tumor. The tumor was blocking the spinal fluid from draining and it was causing Lota’s optic nerves to swell up.  

It's almost a year later and we are preparing our Warrior for a 5th brain surgery.   

Our family has a new normal and this journey is not one I would wish on anyone.  But through this trial we as a family have learned some very important life lessons.  We have also learned to lean more on God for patience, peace and guidance. It is the knowledge of him that keeps us going when we feel we can no longer stand on our feet.  

I have learned so much in the past year but one life lesson I want to share with you occurred to me this past Wednesday - October 7th while we were celebrating Lota’s 9th birthday. 

Lota’s little brother is struggling a lot with everything that’s going on especially all the attention Lota has been getting.  So we decided not to make a big deal on Lota’s birthday but just do something simple as a family at the park. Keith told me he got the cake figured out for Lota’s birthday.  I was very happy he took care of that big part of the day. 

Well, when Keith showed up at the park with the cake, it was not what I had imagined. It was a basic round cake with no Happy Birthday on it.  I was starting to feel upset and I asked Keith what happened to the cake.  He explained that the people he ordered the cake with made a mistake and didn’t make the cake.  So he just picked up a cake at Smiths. To make things worse,  I go to turn on my phone to take pictures and my phone storage is full, I reached for my canon and the batteries were completely dead.  Yes.  It was that kind of day. 

I started feeling anxious and my mind was flooded with these questions “What if this is Lota’s last birthday?! What if, this upcoming surgery goes wrong and he will be in a wheelchair?! What if this is his last birthday cake he will remember? What if the worst happens to my boy and I have no pictures to look at and only a memory of a plain cake to remember?!” 

But just as my mind was flooded with these 'What if…' questions and my anxiety was slowly building up; a very clear and beautiful thought came to me like it was written across the beautiful skies above the Wasatch Mountains.   It read - 


The what ifs of life can rob us of our most priceless moments. Don’t let it. 

At that moment, I looked up to find Lota smiling from ear to ear while playing football with his sisters.  He was running, jumping and having the time of his life.  

My Lota is running, laughing, happy and another year older!  What a priceless moment!  

And with that, I thank my Heavenly Father for the birthday cake without a Happy Birthday on it. I thank him for another year with Lota.  I thank him for a wonderful husband who loves me and our kids so very much.  I soaked in each moment that night, knowing that life is truly too short to worry about the what ifs of the unforeseen future.  Today is truly a present and I enjoyed it. 

As Moms, we are often lost in our own vision of how the day or an event should go that we miss the many priceless moments happening right in front of us.  

I pray that I will never forget to see the priceless moments when everything seems to not go my way. I choose to live one day at a time and always remember not to allow the what ifs of life to take control of my happiness today. 

"JUST LIVE WARRIOR LOTA"

Life is only but for a moment.  So Live! Live a Good Happy Life.  Live a life that brings happiness to others also.  Live a life that you can be proud of when death knocks at your door. That's the powerful message I feel I should share with you today. And that message burns in my heart because of an amazing man our family got to know in the past 6 months.

Lota met a wonderful man name Todd Bates back in March during the Buffalo 50 miler.  Todd is our very close and very dear family-friend Julie's cousin.  Julie has been Lota's other running buddy since we discover his passion for trail running. Todd was fighting a malignant brain tumor (he was also the longest living cystic fibrosis patient we knew of) and Julie ran 50 miles that day for Todd, for her family and for our Warrior Lota.

The closeness that race brought all of us from that day forward is one of Todd's last gift to all of us there that day. Todd was an inspiration and a gift to Lota and our family. Despite feeling so weak from chemo and radiation treatment, Todd still made his way to Antelope Island that hot afternoon to cheer Julie and Lota on.

Todd fought a good strong fight and he lived his life like the care-free wild mustangs of the West.  His motto was "JUST LIVE". And LIVE! he did. After 10 long months of fighting, Todd passed away surrounded by his dear family and friends last week.  Lota was devastated when he heard the news. Even though he had only known Todd for a short period of time, Lota felt a strong connection to him.

It was hard to see Lota go through such a loss at such a young age but with Todd's words of wisdom that he lived by, I reminded Lota that Todd wants him to "JUST LIVE!"; to enjoy life and not be overcome by sorrow only.  That Todd wants him to Live a Happy Life, to be cheerful even in difficult times. Todd is no longer suffering and Todd is now one of his many Guardian Angels. Lota felt comforted to know that Todd is now looking over his family and friends and that means Lota too.

Lota requested to go say goodbye to Todd and even though I wasn't sure how seeing his friend in a casket would affect him, I also knew that it is important for Lota to have that closure; to say his last goodbye.

At the viewing, so many people came to say goodbye to a great man. As I looked around I saw many of them wearing their camo JUST LIVE shirts.  These are the same shirts they wore during the Buffalo Run. On the left sleeve of the shirts are the words WARRIOR LOTA.  For a moment I saw Todd wrap his arms around our little Warrior and whispered,

"JUST LIVE WARRIOR LOTA! Just Live". 

As tears rolled down my cheeks that moment, I turned to find Lota with his 4 year old sister by Todd's casket.  He was looking at Todd intently and then I hear him say to his sister;

"There are two Todd's now.  There is Todd's Spirit in Heaven with Heavenly Father and this Todd - his body.  His body is in a deep, deep sleep now. Todd was a great man Tifa. He really was". 

And then they both turned and walked away with smiles on their faces.

I marveled at the wisdom Lota showed that night. He seemed too mature for an eight year old boy. A warm feeling of love filled my heart for my little Warrior.  I quietly Thank my Heavenly Father for the knowledge that we have of the afterlife.  I am grateful that Lota has that knowledge too. I am grateful he had the opportunity to meet Todd and learn one of life's greatest lesson from him.

Life is really but for a moment; a precious moment that I must treasure and live well.  Life is too short to be overcome by sorrow and despair, to worry, to fear the what ifs, to hate, to be filled with anger, to seek revenge, to debate our differences, to be obsessed to prove a point and especially to hold ill feelings towards others. Life is only but for a moment and WE need to #justlive.

Thank you Todd for touching our lives and changing us for the better.  Now run free our friend and enjoy the untouched mountains of Heaven.  

A Burden Made Light One Tool At a Time.

A week ago, Team Home Depot (Layton UT) came to our home and updated Lota’s room.  This help was possible because of so many caring people.  Back in May,  Lota’s teacher (the Amazing Ms Bird) told Becky Anderson (a cancer survivor and one of the most incredible people I have ever met in my life) Director of Anything For a Friend about Lota's fourth brain surgery.  From there, Becky got her team together and got the ball rolling for a surprise for Lota.  

Team Home Depot came out and completed the project last week. The timing for the room update couldn’t be any more perfect.  Lota has been struggling with expressing himself in the past couple of months and as we go from day to night to weeks; the more frustrated he felt and the more we all felt overwhelmed here at home.  There were many days I felt close to my own breaking point, trying to help Lota, trying to help my other five kids with their emotional needs and most of all trying to keep my own emotions in check. So when Team Depot came knocking on my door to update Lota’s room; they also brought a much needed light in Lota’s eyes and to this Mom’s breaking heart.  

Lota and his little brother were not allowed in their room for two full days. So while they were living out of a box in Daddy and Mommy’s room, Team Depot were hard at work one tool at a time. The excitement of this wonderful unknown was making Lota smile from ear to ear.  He had no time to think about his problems because his mind was too busy wondering and imagining what his room could possibly look like.  






 Lota loves Fast & Furious and that’s the theme we ran with.  Just like his Dad, he is fascinated by fast cars. Team Depot did an amazing job painting, adding more storage in the boys' closet, using some old rims we had for a traffic light nightlight /bookshelf and the fourth one for a cute little table.  They provided some cushions for a little quiet area for Lota to just relax. Ken (the lead on the project) was so generous to give Lota a drift car track of his from when his son was little. 




And when Lota saw his room - he was BLOWN AWAY.  Team Home Depot and Anything For a Friend brought back the fighting warrior in my son and I as his Mom, feels a lot lighter in my own sorrow and my cup runneth over in gratitude.  

Last month, Lota, his little brother and Daddy went on a Father and Sons campout.  It’s a little summer tradition they have. When they returned home, they informed me that they are getting rid of the bunk bed and they are going to have tents as their beds.  I was a little concern at first with this idea.  

Well, the tents have arrived and I am impress.  Lota now sleeps in his own bed at night and loves to hang out in his tent. 





This project wouldn’t have happened if it wasn’t for the caring people that thought of Lota and his struggles and wanted to make a difference for him. Through Ms Bird (Lota’s teacher) and the wonderful faculty and staff at Lota’s school, Becky Anderson and her team (@Anything For a Friend)heard that there is a boy that may need a little lift during his fight with a brain tumor. Through Becky, Derek Carver (Former Manager of our Layton Home Depot) and Team Depot heard about Lota and came to our home to do a pre-work assessment of Lota’s room. And through Derek Carver, Ken Taylor and his “make it happen”team came over and updated Lota’s room. It is through all these compassionate people’s actions, a little 8 year old boy that was having the worst few weeks of his journey was able to forget about all his problems.  

Keith and I are deeply grateful for your kindness and love for our little warrior and our family.  Thank you for bringing a much needed light in our lives when we felt hopeless and alone. 

Lota now has a fun little oasis to retreat to when he feels the need for some peace and quiet.  


















And we as his parents feel a big burden lifted off our shoulders.  Sometimes, when we really want to help someone and we are not in a position to do it on our own, just reaching out to someone that we know or think can, can make a big difference. Because that help may be just want they need when they need it. I know that is what I have learned from this project. I can help others by starting a seed of conversation and that conversation will eventually reach the right people who can make it happen. I know this because I have seen too many tender mercies of our Savior. I have faith in our Heavenly Father's timing.  I know that our Heavenly Father will find a way to get the information to the right people  at the right time for the help to get to us just when we needed it the most.  So don’t be afraid to reach out on behalf of a friend who is in need of some help.  Help may not get to them right at that moment but it will get to them just when they need it the most.  Just like it did for us and our Lota. 

See more pictures here: https://www.facebook.com/media/set/?set=a.1594951817433236.1073741887.100007552993807&type=1&l=98ec4f1a0d

With Alofa, 
~Rowena. 

Another Big Hill to Climb.

Today my heart feels a little lighter.  I can feel your prayers. I know with time and keeping an open heart, this journey will get a little easier.  There are days I want to just keep my door shut, my windows and the blinds closed and the door bell disconnected.  There are days I do not want to keep an open heart. 

Those are the days I know I must stay away from. 

We had a very rough start to the week, last week.  After weeks of many melt downs and not being able to express his feelings (whether it was him refusing to or his brain just having a hard time putting his feelings into words) Lota finally opened up to us.  

It was Tuesday night August 11th.  Lota was just having a hard time.  And then another melt down started and this time he was able to say it out loud.  

“I’m scared.  I’m scared I might die from this tumor.” 

Those are the words my sweet boy wept as his Dad held him close.  

Those words pierced our hearts so deeply. 

Yes.  We count our blessings everyday that our sweet boy is here but knowing that Lota is actually thinking about the possibility of dying from this tumor is heart wrenching.  No eight year old should ever have to worry about such a painful possibility for his own future.  

I have spent many days praying to God for comfort and peace.  I know that in his own due time, he will show me why my family but especially my little Lota has to endure this chapter of our earthly journey.  I know there is a plan within this plan.  Knowing all that does not make it any easier though. 

The tumor continues to grow and we are looking at a 5th brain surgery in the future.  Lota knows that the tumor is growing and I know he is starting to think the worst of things.  We are trying to keep him positive.  Being 8 is hard enough. I can’t even imagine what it’s like to be 8 with a brain that used to work just right and now it doesn’t. Tonight Lota told me that it’s really hard to think.  I can only imagine.  

I keep reminding Lota that this journey is just like his trail runs.  He will have really hard days (just like those tough hills on the trail).  He will also have really good days (just like those easy flat stretches on his runs) and maybe more bad days then good.  But no matter what, he must keep on moving forward and pushing through because the view on top is absolutely worth it.  

Please continue to pray for Lota and especially us his parents so we know exactly what we need to do for Lota next and how we can help him stay positive and continue to fight.  

Love ~ Lota's Mom.

A SUMMER of FUN & #teamlotagivesback

Hello Everyone.  

Summer break is going along well.  Lota is busy with speech therapy, physical therapy and doctor appointments. Vision therapy is officially starting next week.  We will be making the drive down to Salt Lake for that. Speech and physical therapy are both about 10 minutes away from our home. So vision is going to be a little bit of a drive but at least it's gonna be every other week. 

Well, a lot has happened since I last wrote. 

JUNE MRI RESULTS:With last month's MRI, our neurosurgeon did not see any new growth the day of our follow up but a week later he called and told us that the radiologist did notice a little bit of growth in the tumor.  He said it is only about a millimeter so we shouldn't be too alarm.  I love Lota's neurosurgeon but I have to be honest, I'm a little bit worried. I mean I'm his Mom. This is my baby and I have to admit I worry about him and his future and what this tumor is going to do to him. I know his Dad is too. There is also 2 cyst on the tumor Lota's medical team is watching very closely. 

With those in mind, we all agreed the port needs to stay just in case Lota needs it. So we have to take Lota in to get his port access or flush every 4 weeks to keep it clean. We did that this past week and Lota is starting to get the hang of it.  I love how sweet he is to the nurses.  

Next port access in 4 weeks and next MRI is in September.  

FUN WITH MASCOTS:

Last weekend I took Lota to play dodgeball with the mascots of the Mascot Miracles Foundation. You know, when you have 5 other babies that need you just as much as your sick child does you start to make sure you enjoy every moment spent with each of them. It was so nice to have some one on one time with my Lota. Just him and me. In this picture, we were trying to come up with a game plan, like which mascot to get first. 

Thank you to my friend Kimberly Colbert for capturing this priceless moment. 

RUNNING RAGNAR; RUNNING FOR A PRINCESS:

And the highlight of June was - Lota survived his first Ragnar experience. He had the best time of his life. He ran Leg 7 (4.7 miles) with our dear friend Julie, Leg 19 (3.6miles) and Leg 20 (2.9miles) with his Dad in the middle of the night and then Leg 32 (4.1 miles) with me (his Mom). He ran that brutal 4 mile down hill in memory of a Princess. Her name is Millie Flamm. She passed away from cancer and her story touched our hearts. Lota had a great time and as his parents we are so proud of him. We are so amazed at how compassionate he is towards others at such a young age. 

Life is all about experiencing the joy of living. Lota did just that at Ragnar. I was in Van 1, he was in Van 2 with his Dad. Every time we met up, he would give me a big  hug and say with so much excitement in his eyes "Mom, I'm having so much fun." The quote that kept coming into my mind was this "Life is to be enjoyed not just endured". We can't dwell on our trials and our problems. We must make time to play and enjoy the ride too. Life is too short to not have some good fun with those we love while we're here.

#TEAMLOTAGIVESBACK:

Lota is also working on a cool little challenge with his siblings. Lota will be 9 years old this October and after several family discussion about giving back, he wanted to raise money for  his favorite charities. We were all excited about this and wanted to make it happen. But after more family discussion we concluded this approach does not work for our family's situation right now.

So with some good advice from our Poppah, we have decided that the best way for the children to give back is through service.  The kids are excited to find little ways to serve others. We will also focus on 9 kid friendly service project between now and Lota's 9th birthday.  


SEEING DOUBLE:
Well, with the surgery and all the changes that Lota's little brain and eyes are going through, Lota had to go get his eyes checked again since he was seeing double with his glasses. He got them at end of March.  The poor kids needs new lenses. So we should be getting them this week. Lota is excited to be able to see clearly again. 

Thank you for supporting Lota and sharing his story. We hope his fighting spirit continues to inspire many of you to continue on with whatever journey you are pursuing in life.  God bless and have a wonderful week.

Thank you.

"HE'S AN OLD SOUL"

In the last few days I have had this constant thought of sharing with you some of the many act of kindness I have caught Lota do or the sweet words he says to others to help them feel better.  But each time I let it pass by and move on.  Today that same thought came again and it was impossible to ignore.

Let me start here:

On the last day of school (last week Thursday) Lota did one of the most selfless thing I have ever seen an 8 year old boy do.  As a goodbye gift, Lota neatly signed his name on his Park City Wild Half medal and gave it to his teacher. I stood there trying my best to hold back tears, as this sweet woman held my little Lota as she wept tears of love for a boy she's grown to love and treasure this schoolyear.  My heart was about to burst for both of them.  Lota loves his teacher.  Ms. Bird loves and cares for Lota so much.  I have felt it.

Of the many wonderful things she said about Lota that day, I will always remember this.

"He's an old soul", she said while trying to hold back her tears. It was impossible. We both cried.  We cried tears of gratitude, hope and love for Lota.

She was perfectly right.  Lota is truly an old soul. 

Today as I was cleaning my boys room, I came across a card written by Lota for his little brother.  It was short and sweet.

I smiled. I cried.  I read it over and over again. And as I read, memories of Lota's acts of love and selflessness flooded my mind. Lota has always been such a giving, loving and gentle soul. I just wasn't paying close attention to how special he really is.  Memories like this one from the hospital.  

My other kids were getting ready to leave for home after visiting Lota.  It was a hard visit for my 6 year old son (Lota's baby brother and only brother). Sefa did not want to leave the hospital without his big brother. He cried and begged to stay.  It is against hospital rules for kids to stay so Lota reached out for his baby brother and hugged him and comforted him that day.  It helped his little brother feel a little better.  I took a video because I wanted to remember that moment forever. 

Memories like this one from last summer when we were volunteering at the This is The Place Heritage Park.  

~ My Facebook post from August 7th, 2014 ~

"Lota truly has a big heart. We've been volunteering at the This is the place park every other Wednesday this summer. Yesterday, while we were there, I took Lota and his siblings to the candy store. Lota had $1.25 to spend. As I was waiting for him to pay, I heard him ask the cashier

"Is this for tips?" 

"Yes". The cashier responded. 

And then I heard the sound of a coin being dropped into the jar of coins.

My heart skipped a beat. My son only had $1.25 to spend and he still gave the cashier a tip???!!!!! As we walked out he said "Mom, I gave the guy my quarter for a tip. It was the biggest money I had" I smiled as I held back tears of joy and gratitude. Speaking would have made me cry. This kid has a loving heart and I am learning so much from him."

And another Facebook post from during a trail run last summer.

"You know you've been slacking on cardio when you go on a run/hike with your 7 year old and he keeps stopping to coach you up a hill or just to make sure you're Ok. My biggest inspiration and motivator kept calling "Come on Mom. Run!!" I think it's time to get back on it. ‪#‎mysoninspiresme‬ ‪#‎myboylovestorun‬‪#‎runningforkidswhocant‬ ‪#‎runningisgoodforthebodyandsoul‬ " (August 26th 2014)

I feel so much love, gratitude and joy for this "old soul" my Heavenly Father has trusted me to love and guide in this temporary life. There is so much more I need to learn from Lota. There is so much more I have yet to learn. But one thing I do know and have learned this far; Lota is a divine gift; an old gentle soul.  Therefore, I must share his light and love with others. I must allow his light, love and selflessness to touch others lives and bring happiness to them too. 

Much Love, 

~Lota's Mom. 

THE SPIRIT OF THE TRAILS

The Start Line:

Lota was smiling from ear to ear.  He was having a hard time containing his excitement.  He couldn’t stand still.  He kept pulling pranks on his siblings, his Dad and I. His little sister was enjoying the fun mood Lota was in.  She kept making faces at him and doing silly poses to embarrass her brother. 

As more and more runner filled the Start Line of the Park City Wild Half, the more I felt those “Mommy Butterflies" in my stomach. This is Lota’s longest race since his 4th brain surgery. The one that shook me to my core. He was suppose to bounce back with no problem but he struggled this time around and as his Mom, I am constantly worrying about him. I knew Keith will be out there on the trails with Lota and the girls but that never stops me from worrying. I guess that’s the Mom in me.  

A runner walked by and said Hi. She was sporting her superhero running gears.  My four year old is intrigued and started asking questions. The runner introduced herself.  She told us that she went from being in and out of a wheelchair for five years after a very serious parachute accident in the military and several surgeries to running ultra races and marathons.  And then she told me how she donates every mile she runs to a sweet little boy named Alex who has passed away from cancer. Keith and I were truly inspired. 

I knew Alex.  Alex made a great impact in my life.  He was the first child with cancer that I had the honor to meet.  I still remember his adorable smile that day when I asked to take a picture with him. Even though he was so tired, he agreed and smiled for our picture.  As she told her story, the Mommy Butterflies slowly leave me. A great feeling of peace filled my heart.  

As I looked around me, I saw many people who weren’t there just to run a personal best that day. I saw people who run for Hope. I saw people who run for little Warriors who are fighting with us from the other side.  I saw people who run for a bigger purpose than themselves.  I saw and felt the warmth of the Spirit of the Trails.  

I knew this would be one of the hardest race Lota will ever run.  I knew he was running this race for himself.  I knew he will be a stronger fighter with each mile her conquers on the trail and I wanted him to be alright out there.

Crossing the Finish Line:

Lota finally crossed the finish line at 3:32 minutes (He ran this race at 2:58 minutes last year).   He was greeted by cheers and applause from those who waited patiently for him to finish.  Some of them had crossed the finish line over 3 hours earlier. In the midst of their applause for Lota, I also heard a subtle but clear sound.  It was calm and gentle. It glided by me with ease as I stood there with admiration for my boy.  It sent a feeling of peace and reassurance through me.  I felt the Spirit of the Trails was right there, gently handing my boy back to me. Letting me know,  my boy is alright. Letting me know Lota overcame more than 13.1 miles that day. Letting me know I don't have to worry so much. 

"Thank You Mom" 

As I stood in the kitchen Sunday morning, Lota walked up to me and gave me a hug.  He is smiling from ear to ear again.  “Thank you Mom, for supporting me with my race yesterday.  I had a really good time”, he said.  I wanted to melt. I squeezed him right back. My heart smiled with gratitude.  The Spirit of the Trail is Alive within my boy. I am grateful to finally feel of its presence. 

Yesterday Lota did a video to re-tell his experience from Saturday.  Re-telling is very important as he work to improve his memory during his recovery. 

LACK OF COMMUNICATION. EMOTIONS & FRUSTRATION

I've been trying to not get angry. I'm not angry anymore but when I wake up and see my boy's sad face. I feel the disappointment and I feel the need to express myself. 

Communication is crucial in every aspect of life. And when it comes to issues that involve us and our children emotionally; communication is even more vital. 

I was given the okay to make the appointment to have Lota’s port/central line removed by one of Lota’s care team. Lota was very excited and was looking forward to that day (yesterday). Four days before surgery, I was told that the other half of the team felt we should keep the port in until our next MRI. The reasons presented were very good reasons. My question is, Why was I given the okay to make the appointment and get my boy all excited when half the team was not notify on this decision. I thought when they say this is your “care team” they are to communicate before they inform us parents on what to do. 

We now understand why Lota has to keep his port in. But if communication was done the way it was suppose to be, Lota would never have the knowledge that his port was going to be removed and now he is here wondering whether he will end up needing chemo anyways and whether we think the tumor is coming back. Yes, those are all possibilities but when working with children this should be an emotional roller coaster a medical care team should already know how to avoid. These are hard questions for a parent to answer, let alone a child with a personality like Lota to try to understand. These are questions that are pulling at my heart. 

I am so grateful to know that there is a God out there that I can run to when I feel helpless. Please include Lota and our family in your prayers today.

AN ANGEL WARRIOR ON LOTA’S SIDE: TYLER SMITH F2TF

Written by - Rowena Ward

The overwhelming feeling of gratitude, love and hope fills my heart. But my heart also feels the heaviness of sorrow; sorrow for a sweet mother who have lost her child. A pain too great for me to even imagine. 

This post is late for many reasons. To be honest it’s been hard to express myself without having a waterfall of tears. I hope I can convey the feelings of my heart. 

Friday night our family witnessed the love of so many good people; from friends, neighbors, teachers, students, children, strangers and most of all the love of a boy that we never had the honor to meet. 

When our family first moved into our home 3 years ago, we heard of a warrior name Tyler Smith and the many lives he had touched while he battled cancer. We saw the F2TF (Fight 2 The Finish) logo

around our community and on social media and wondered who this brave warrior was. Little did we know, Tyler will find his way into our hearts and we will wonder no more. 

This past Friday we attended the kids’ school 5K Run and there we met Tyler through his sweet mother Ann. Team Tyler and Anything for a Friend had teamed up with our school PTA to surprise our family with the ‘Giving Tree’. My heart; torn between gratitude and sorrow for Ann’s great loss. I can only imagine her pain. I have many times wept alone in fear of the ‘what if’ for my Lota. But for Ann, her loss is all too real. Her little warrior is no longer here for her to hold in her arms. Yet she uses her pain to touch so many lives including that of our family. Her strength gives me strength. I only spoke with her for about 10 minutes but I walked away feeling fulfilled with Hope, Gratitude and Love. 

Please remember Ann & the Smith family in your thoughts and prayers. This month marks 3 years since their beloved Tyler passed away. 

Our family will never be the same again.  As we stood by the ‘Giving Tree’ Friday, Becky - Director of Anything for a Friend mentioned that Lota and Tyler have the same colors - Black and Green.  Ann also told a story about Tyler, telling his basketball coach “I GOT THIS!” during a game. Yesterday while going through quotes tied to the Giving Tree I came across a quote from Tyler that is almost identical to something Lota told me a couple of months ago.

At that moment, a connection from the other side was made. Lota and Tyler having the same favorite colors, both have walked the same school halls and both with the mental toughness of Warriors, were meant to connect; were meant to be friends. Our journey will never be the same again.  Our Lota has an Angel Warrior on the other side rooting for him. 

The 5K Fun Run was a memorable night for our family. On the back of the 5K shirts with all the Sponsors,  is a little stick figure with the words  “Running with LOTA”.  

And Lota did not disappoint.  He somehow talked his sister out of a bib # and ran the 5K with everything he had.  

Last night for Family Home Evening, we sat down as a family and talked about the legacy of the "Giving Tree". I can almost see Tyler standing by the Giving Tree smiling at us, especially at the wiggly-giggly Ward kids. The excitement on their faces as they stare at the Giving Tree are absolutely priceless. Tyler gotta be up there watching and laughing with these little Adam’s Eagles. 

"Tyler Smith, we don't know what the future holds for Lota but know that we will (F2TF) Fight 2 The Finish with You, Faith, Family, Friends, Love and Giving Hearts". 

This will be our very first tree on our property and to have such a story makes it even more priceless and memorable. We can’t wait to plant it and we look forward to Paying it Forward. 

Thank you so much Team Tyler, Anything For a Friend and Adam's PTA.  God Bless. 

~Lota's Mom. 

You can learn more about the ‘Giving Tree’ at http://www.anythingforafriend.com/index.php?cID=145&mode=edit&ctask=check-out-first&ccm_token=1346643385:35251fd079ca7b1e721433c91b36ff71