"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...