TACKLING THE BUFFALO RUN 50 MILER

Poor Keith didn't have any sleep the night before the race. He had spent all day traveling from New Orleans after a long week of training, only to have his truck die on the side of the highway that night. He was there almost 3 hours.  Somehow my phone was on silent that night and didn't hear his calls.  Yes I will never hear the end of this until the day I die. :o) When Keith got home, he quickly packed up their bags and headed for Antelope Island.

Lota was super excited. He amazes me everyday.  What 8 year old kid is excited about running a 50 mile run? A kid name Lotatoa that is.  It now make sense why I felt strongly to name him Lotatoa, meaning Our Warrior in the Samoan language. I was torn between Lototoa (meaning brave heart) and Lotatoa but somehow Lotatoa was the perfect fit for him.

With his Dad and our good friend Julie Chappelle by his side, Lota without any doubt started the longest trail run of his life.  Julie Chappelle was also running for a dear cousin who is fighting brain cancer. Heidi, Julie's sister had assembled their whole family and had a big cheering squad out on the island.  I was in Salt Lake that morning for an appointment and by the time I met up with Keith and Lota, Lota was coming up to mile 28.  He was in great spirit but I can tell his little feet were hurting so bad.

Our good friend Matt who just happened to hear about Lota's race the night before decided to show up with his whole family at mile 20 to help pace Lota.  That was a great relief for Keith given he hasn't had any sleep in the last 24 hours. The poor guy was running on 5hr energy drinks and love for his boy.

As Lota was making his way to mile marker 28, about 20 to 30 people were there cheering him on. It was a wonderful feeling to see so many people there for him. I helped changed his socks, get him some food and sent him on his way. Lota kept telling us he wants to finish the race.  Keith and I both knew, that mentally Lota can do it, but physically his little feet were just too sore and we had to make a decision.  Keith paced him all the way to the Garr Ranch where we told him, he had done absolutely amazing. So many people can't even go that far and he has.  Lota was a little sad but also very happy that we are all very happy for him.


Check out the news coverage on Lota from that incredible day.

We are deeply grateful for Lota and his positive attitude about life and his struggles. It is his strength that carries us through when we feel like we can't take one more step forward.

"LET'S KILL IT!"

LOTATOA ~ OUR WARRIOR SHOWS NO FEAR:  
On November 12th, Lota bravely walked into his second brain surgery to remove as much of the tumor as possible.  

Lota's neurosurgeon was able to remove 2/3 of the tumor. The other 1/3 was pretty much cemented to a vein; it was too risky to remove it.  After almost a month of waiting and praying, Lota's biopsy came back - No Cancer.  More prayers of gratitude. Because of where the tumor sits; its effect on Lota's vision will always be a concern.  So we continue to pray for our sweet Lota and follow up with his doctors. 

XTERRA wrote a beautiful article about him that you can find here: http://www.xterraplanet.com/2014/11/xterra-kid-big-heart-needs-help/

Lota's love for running and that powerful act of kindness he did for his friends prepared him for a day we never saw coming. The tough patches he hit on those trail runs, and how he fought through them were the experiences we used to help him push through the tough times of his journey. Lota has a big love for others and a heart of a fighter; a warrior in his own ways. Two day after his 2nd surgery, he refused to stay in bed, instead he walked almost the whole hospital floor and then declared to his neurosurgeon, "I'm ready to go home". He was released later that day. 

Amy Donaldson of Deseret News again wrote another beautiful article on Lota for Christmas Day 2014. http://www.deseretnews.com/article/865618415/Little-Warrior-and-family-comforted-by-community-generosity-and-support.html?pg=all

"I GOT THIS!"

It was around 7pm Monday February 23rd 2015. I was cleaning up dinner and had just finished making final arrangements for my other five kids for the following morning.   Lota was scheduled for an MRI at 9:45 am the next day and we were to check in at Primary Children Medical Center Imaging by 7:45am.  I thought of Lota and how he was so sure he was not going to fast for this MRI because he "wasn't sleeping this time. I hate not eating" he would say. As I thought of him and his MRI, I quickly walked into the living room to see him.  He was sitting on the arm of the couch watching TV.  I said to him "Son, if you are having any doubts about doing this MRI awake tomorrow you gotta let me know because you have to stop eating by a certain time tonight for them to put you under."  He looked at me with a little grin on his face. He playfully jumped off the couch while pumping his fist in the air and said "I GOT THIS!"

I smiled with pride at my little warrior and said "Okay then!"

MRI RESULTS SHOWED GROWTH:

It was Tuesday February 24th, 2015. Lota walked into the MRI room with confidence. He is not kicking and pulling from the nurses this time.  The very first MRI he had at Ogden Regional (where they discovered the brain tumor) has left him traumatized.  This time he had three months to prepare for this one. We have openly talked about this moment many times.  His Dad had warned him that moving will result in blurry images and that means they will make him do it all over again.  Which means the doctors will most likely give him medicine to sleep while they do it.  He bravely said goodbye to his Dad and I as he laid down on the bed.  He was ready.

He was all smiles when we met up with him over an hour later.  We went straight to Dr. Kestle's  (Lota's neurosurgeon) office right after.  Dr. Kestle loves hearing about Lota and his running stories and this time was no different.  He was all smiles while he pull up the images from the MRI. But that smile slowly disappeared as his facial expression turned more serious.  He mentioned that the tumor had grown back - a lot.  He mentioned a third brain surgery. Lota was busy playing on the iPad but I knew he was listening. Surgery can be done the very next day or the following week. But before we can have surgery Lota must undergo a spinal MRI and some blood work.  Once Dr. Kestle left the room, Lota looked up from the iPad.

"Do I have to do another MRI?"

"Yes, son." his Dad responded.

This time Lota broke down and cried.  "I don't want too. Why do I have to do another one?!!! I don't want to!!!"

We re-directed his attention to the surgery.  He seems to handle surgery a little better compared to the MRIs. We told him, he had to choose a date for his surgery. We understand he does not want to deal with this, but surgery has to happen and he has to choose a date.  He chose the next day, that way he will have plenty of time to recover for his upcoming race - his 50 mile run.  He's been talking about this race since last year. 

Dr. Kestle came back into the room.  He wanted us to come back at 5pm for blood work and a spinal MRI.  Lota was not happy. But as his parents we know him too well.  He loves to eat out.  So we suggested going out for lunch, home to check on Nana and Poppah and the other kiddos, back to Primary for the spinal MRI and blood work and then go out again for dinner at his favorite place, ChuckArama.  "WHAT??!! We get to eat out twice in one day?!" Lota was in. 

"I GOT THIS!" He repeated when I asked him a few minutes later about the Spinal MRI and surgery. He was ready to fight again.

Spinal MRI and bloodwork went well. We were ready for surgery.

THIRD BRAIN SURGERY: 

It's Wednesday February 25th, 2015. We were told that the more these poor kids go into the operating room, the harder it gets for them. My heart cried as we watched Lota walked to the OR with so much dread in his eyes.  He did not want to go, but he knew he had to. He didn't complain at all.  He just walked and never looked back at us.  Surgery went well. They entered the brain through the same cut from the very first surgery.  So recovery was a lot easier this time. Tissues were taken for a biopsy. Lota came home the next day.

THE UGLY SIDE: 

It 's Tuesday March 3rd, 2015. Dr. Kestle called. Test results are back.  Tissues still show that the tumor is still a mature teratoma, however, tumor markers have elevated and the amount of growth in three months is very concerning. We have a meeting scheduled with oncologists on Level 4 on Monday, March 9th at 11am. This scared me.  I heard Level 4 is where cancer patients go.  

It's Monday March 9th, 2015. We met with oncologists - Dr. Jessica M and Dr. Carol Bruggers.  Dr. Kestle stopped by briefly and then left. Lota is diagnosed with a Non-Germinatous Germ Cell Tumor.   This means Lota's tumor is showing an ugly side. The malignant side that we all did not want to see. Chemotherapy and radiation are the standard treatments for this.  I was calm but I was frustrated. The side-effect list was ridiculous.  I felt like,  I have no choice but to to pick my poison for my child.  There was too much information.  I wrote down as much as I could.  They told us about a clinical trial. We agreed for Lota to be in this trial so he can help those that may walk this same road in the future. 

We demanded that chemo starts on the 23rd that way Lota still gets to run his 50 mile race. There were so many tests and logistics to be done, so that was not a problem. 

"LET'S KILL IT!" 

On our drive home that day, Lota leaned forward from the back seat and asked,

"So I have cancer?"

Me - "Yes son."

Lota - "And chemo will kill it?!".

Me - "Chemo will shrink it and radiation will kill it. That's the plan". 

Lota with great confidence - "Cool! Then Let's Kill It!!" 

I looked at Keith. I wanted so bad to cry. In my head I asked with tears in my heart - "Oh God, who is this kid?! Oh God, I really do have a warrior in my hands! He ain't crying, so I better not cry either". 

PORT FOR CHEMO, SPINAL TAP & SIBLINGS FEELING THE CHANGE: 

It's Tuesday March 10th, 2015. Lota goes in for another surgery. This time to get his port (or central line that they use to administer the chemo medicine) put in and a spinal tap.  Keith went to work from the hospital and Lota and I came home.  We arrived home around 6:30pm and my 4 year old really wanted to know why I left her at the neighbor's house that long.  I noticed that my two younger kids are starting to feel the effect of all the different changes happening.  It breaks my heart. Chemo is going to change our lives and that really worries me for them. 

SIBLINGS MAKE SACRIFICES TOO: 

It's Wednesday March 11th, 2015. It's my second oldest's birthday, so I made sure I took her lunch to school.  We had thrown a last minute party for her on Sunday because we knew this week was going to be hectic.  We will be in and out of Primary and Poppah will have his knee replacement this week too. She has been so sweet and understanding.  She hasn't complained one bit about us having a last minute party for her. I feel so grateful for her understanding.  I rushed home and headed down to the hospital for a hearing test for Lota.  Hearing is one of the things that chemo can affect during treatment, so having a baseline for the rest of treatment is very important. Lota did great. 

A MIRACLE ON FRIDAY THE 13TH?! 

It's Friday the 13th and we're getting good news.  Not sure if that's a good thing or not. The oncologist called saying recent blood test shows Lota's tumor markers are back down to normal. Meaning Lota may not need chemo right away but first we have to do more test to be sure.  I was upset at first.  I mean "COME ON!! Who messed up here?!  Did you just have my son undergo a spinal tap and surgery for a port that he is not going to need after all?!" As my voice started to escalate on the phone, a small voice in my head asked "Rowenna, why are you so upset? Don't you believe in miracles?" I froze. "Yes! I do!" And in that moment I felt humbled by the still small voice. But I can't be too excited yet.  I have to wait for more tests to be done. 

ANOTHER MRI & BLOOD WORK: 

It's Tuesday March 17th, 2015. Lota and I headed down to Riverton for another spinal & brain MRI.  Keith is out of town for the week, so Lota was really struggling with the fact his Dad wasn't gonna be there with him. But despite all that, he did great. We also survived the drive home. I only drive about a 10 miles radius from our home. 

NO CHEMO ON MARCH THE 23RD:

It's Friday March 20th and I am getting anxious.  I haven't heard from any of the doctors, so I called around 3pm. I finally spoke with Dr. Kestle.  Tumor markers are still in the normal range.  Still higher from last year but in the normal bracket. This is a very strange case for them.  I called oncologists and they are now postponing treatment. They need to meet and discuss Lota's case again.  But for now there is no chemo on Monday. Lota was very happy to hear the news.  We all are. 

OUR OWN KIND OF MARCH MADNESS: 

During all this craziness, Lota's baby brother decided to jump off the bunk bed and fractured his right arm.  Yes he is right handed. Poor kid.  Poppah (Keith's Dad) also had both his knees replaced on March 9th and March 16th.  Keith is an only child, so we are the only family they have here.  Keith also had a week long training in New Orleans and arrived SL, Friday night March 20th at 11:30pm.   To top it off, his truck died on I-15 on the way home from the airport that night and somehow of all nights my phone was on silent.  He was able to get a hold of a friend after spending almost 3 hours on the side of the highway. So with no sleep, he got home and prepared for Lota's big run that morning.  They were to be at Antelope Island by 4:30am. 

RACE DAY...

MEET LOTATOA "LOTA" - OUR RUNNING WARRIOR

by ~ Rowenna Ward (Lota's Mom)


Keith Lotatoa Ward "Lota" was a much welcomed addition to our family in 2006.  He was our first boy after three girls in a row. And with Daddy being an only child, I was so happy to know Keith can finally have his little boy to do guy things with. 

LOTA'S VERY FIRST RACE:
The excitement on Lota's face as he sprinted to the finish line at the 2012 XTERRA Trail Run National Champion Kids Fun Run was absolutely priceless. He was only 5 years old. We were such proud parents. Little did we know that that was the beginning of an inspirational story that will unfold right before our eyes a few years later.  XTERRA even had him on camera that day. You can find the video here. 


Lota comes up at 6:46 wearing #2139. 

That exciting moment turned into a passion for running after several trail runs with his Dad.  Lota  and his Dad developed a very tight bond and running became their thing.  

BEGGING TO RUN:
As Keith (Lota's Dad) and I prepared to run the Ogden half marathon in May 2014; Lota begged to let him run with us. My answer was a very firm No, but Lota was relentless. He wasn't taking a No for an answer. He begged. He cried. He begged again. Finally his Dad had to convince me to just let him try. We agreed to let him run a half later (just not during my first half). However, he must first run a 5K. 

We signed him up for his school 5K fundraiser to see how he does. A week before race day, Lota fell off the monkey bars at school and broke his arm.  We assumed he wasn't going to run it because of his cast. But No. Lota ran it and crossed the finish line with smiles and more determination to run his first half.  A few weeks later, he ran his first half at the XTERRA Olympic Park, Park City 21K (13.1 trail miles). I was a nervous mess on the way to the finish line that day.  To be honest, I didn't want him to run such a long race. I didn't have a good enough reason. I was simply scared for him. 

Nothing was going to stop Lota from his very first half.  Not an awkward cast, not even his mother. Even though he struggled at mile 9 and 11, he crossed the finish line with smiles and an announcement - "I'm going to cover my walls with these, Mom!" as he held up his medal with confidence and pride.  

He wasn't joking. He later ran the XTERRA Jordenelle 21K, followed by the XTERRA Wolf Mountain 10K. By this time, Lota was so confident with his running, he would not stop talking about his next race. We challenged him to run his next race for a good cause and he embraced the idea. He decided to run his next half for two neighborhood friends that have Spinal Muscular Atrophy (SMA). Amy Donaldson wrote a beautiful piece on Lota in the Deseret Newspaper. You can find it here: http://www.deseretnews.com/article/865611357/Layton-family-turns-tough-trail-runs-into-a-family-affair.html?pg=all

RUNNING FOR HIS FRIENDS WITH SMA:
In September, despite bad weather and a headache, Lota was determine to run for his friends. The XTERRA National Champions held at Snowbasin Resort in Ogden UT was not an easy run. The weather wasn't cooperating that day either, but despite all that Lota gave it his all. He crossed the finish line at around 3hours and 30 minutes and he raised $1735 on gofundme for his friends. Best of all he brought awareness to Spinal Muscular Atrophy; a disease many did not know about until they heard about Lota's cause.  Lota thought it was the coolest thing to raise that money for Tanner and Skyler Jensen.  He was so happy to help. It was after that race that I was 100% certain, there was something special about Lota. Something I did not fully understand. 


TENDER MERCIES & GUARDIAN ANGELS:

On Friday October 17th, after getting a letter in the mail that Lota had failed an eye screening at school, I had a strong feeling to get Lota in for an eye exam that very day. My first call that moment was to our new insurance for a list of providers. Miraculously, a customer service agent answered immediately instead of the usual automated machine and within minutes a list of providers was in in inbox. I had another strong feeling to make an appointment that very day. It was a tough task, given it was already 12:30 pm. Keith was getting ready for work and he wanted to spend some quality time before heading out the door. However, the feeling was persistent, "Get Lota in to see an eye doctor today". I followed through.  After calling several providers with no success, I finally got a last minute appointment with Dr. Wenom at Specialized Optical in South Ogden; someone had just canceled. 

Another strong impression came to me. "Take Keith with you". I did. 

At the eye exam, Dr. Wenom noticed that both of Lota's optic nerves were severely swollen and his eyes were under extreme stress. He diagnosed Lota with papilledema and transferred us right away to Dr. Poll, an ophthalmologist at Mt Ogden Eye Center. After doing further testing, Dr. Poll informed us that there is something in Lota's head, pushing against the back of his eyes. "A brain tumor?" I asked.  "Yes". He did not hesitate. The news was hard to swallow.  But somehow I felt a great deal of peace and calmness. It was a very strange feeling and I was a little bit confused with how I was handling this terrible news. 

Dr. Poll referred us to Ogden Regional ER for an MRI. At around 8 pm a tumor was discovered and we were referred to Primary Children Medical Center. We made a stop at home where Poppah met us and and gave Keith and Lota each a blessing.   The drive to the unknown was heart wrenching, but the pain I saw in Keith's eyes that night broke my heart in pieces.  Only a father who treasures his son could only understand his pain. I reached out and held his hand.  "We have a strong team" is what I kept telling him.  I was so sure of every word. I knew it was coming from within because each word felt right and warm. 

XTERRA wrote a beautiful article about Lota here: http://www.xterraplanet.com/2014/11/xterra-kid-big-heart-needs-help/

THE BEGINNING OF LOTA'S FIGHT:

At Primary Children, we were sent directly to the ICU where a team of doctors surrounded Lota's bed for a briefing. The reality of that moment was tough for both Keith and I. But that peaceful feeling was still there and I was comforted to know Lota was in great hands.  We also noticed that Lota's vision was deteriorating fast since his eye exam at 2:45pm. Doctors were shock at how long Lota was able to take all that pressure in his brain.  Lota could have easily fallen into a coma if we didn't bring him in that day. 

As we waited for doctors to see what the best route is for Lota, I finally realized what had just happened.  The Spirit and Lota's guardian angels have been there the whole way.  They held each door open for my next step.  My boy needed help right away and that help could only come through me that day.  All I had to do was listen and do.  These were  no coincidence. I have witness the tender mercies of my Lord and Savior. I have seen a miracle unfold in front of my own eyes. I shed tears of gratitude. I shed tears of humility. I thank God for using me to help my little warrior. I was grateful that at that moment I was in tune with the Spirit.  I was listening. 

Lota did another MRI the next morning and from there went straight into surgery for doctors to create a hole for the fluid to drain, eventually releasing all the pressure in his brain. We prayed and we asked for prayers from family and friends around the world.  Lota's name was placed on the prayer roll in temples, cathedrals, and many different church organizations around the country by friends, families and strangers. Tissue from the tumor were taken for biopsy also.  Unfortunately, biopsy came back inconclusive. They needed more tissues for testing. The spinal tap and blood test came back normal. That was at least comforting. 

For almost 4 weeks, we waited and prayed for good news.  On October 28th 2014, Lota was diagnosed with Teratoma, a rare form of brain tumor. As we waited for his second brain surgery, Lota was baptized. Many people came and brought presents for him.  He marveled at all the love he received.  I still remember the next morning after his baptism. He came up to me and said "Mom, my baptism was really weird." I asked him why. He said "So many people brought me presents. Normally you don't get presents on your baptism." I smiled and said "Why do you think those people brought you so many presents?" He answered, "Because they want me to be brave for my surgery". I smiled with tears in my heart.  

LOTA'S FIGHT CONTINUES...