KSON Going Gold: Leo Arnold

September 6, 2017

Today we are learning about Leo. Here is story from mom Danica: 

My sweet son Leo was diagnosed with stage 4 Neuroblastoma and Opsoclonus Myoclonus Syndrome at the tender age of only 19 months old.  He was born a happy and healthy baby but in the summer and fall months leading up to December 2014, Leo battled uncontrollable rages, flickering pupils and palsy like shakes not to mention the inability to walk, stand or even at times sit independently. It became abundantly clear that Leo was suffering from something, but it was unclear as to what. Up until this time he had been a healthy, growing baby boy. Leo was initially diagnosed with Ataxia after an MRI of the brain and one very long night in the ER just a few months after his first birthday. During those months we worked daily at a strict physical therapy routine with the knowledge that his Ataxia would dwindle away in 3 to 6 months time, he would become stronger and eventually walk. We remained determined and devoted to helping our son get on his feet, both physically and emotionally and were diligent with his care and development as we waited for time to pass. Over that time it was terribly difficult as his mother to watch my son struggle so much just to get around as he commando crawled around the sandbox next to kids his own age running and jumping along the play structures. Everywhere we went I would see children his age and younger waddling around as they were just learning to walk and run, and I felt desperate to get my son on his own two feet, he was stroller bound at nearly one and a half years old and had still never stood independently. It was emotional for our family but with all hands on deck and Leo making great strides in physical therapy and at home, I was confident that he would get better and life would return to normal with time. It was during this time he earned himself his nickname, Leo The Little Hulk Arnold for his tenacity, strength and sheer determination to walk despite the many obstacles he encountered every day. We had no idea how fitting this nickname would become and what other obstacles would lie ahead in such a short time down the road.

Little did we know how much things would change one November morning in 2014 when Leo woke up with basically no muscle function at all.  He was unable to sit, crawl, or even control his eye movements despite his hard work in physical therapy. This was definitely not a good sign, as his Ataxia symptoms were supposed to get better slowly, not worse rapidly. We rushed him into our trusted pediatrician right away, and upon her first glance I saw the color run completely out of her face, it was clear to not only to us that something was severely wrong.  We saw several Neurologists and specialists and had an MRI scheduled for 2 weeks later, December 3, 2014.  It was on that day we heard the words no parent should ever hear about their child. The words that made my knees weak, made my stomach sick and made my heart break into a million painful pieces. "Your child has cancer." Leo was not just suffering from Ataxia as we were told, but rather a huge mass encasing his right adrenal gland, pressing against his right kidney. He was suffering from cancer, and in the very same moment that time stood still, it took off full speed ahead. Leo's life, our lives and that of those we love would never be the same.

With no time to waste we were admitted into the Peckham Center for Cancer and Blood Disorders at Rady Children's Hospital in San Diego where it would take several heartbreaking and nerve-wracking days to arrive at his complete diagnosis. Stage 4 Neuroblastoma, a cancer of the nervous system, and Opsoclonus Myoclonus Syndrome, a debilitating disorder that also attacks the auto immune and nervous system, with no explanation as to why this has happened to him. Suddenly we had all of the answers as to what had been debilitating Leo for so many months, but not a lot of answers about the road that lie ahead and how he would be able to get through it, with a 40 percent survival rate, we were beyond scared, we were desperate and terrified. Cancer does not gently knock on your door and ask to come in, it kicks the door off it's hinges and completely takes over your life and that of every one involved, leaving you in complete and total fear. Life as you know it will never be the same for you and your children.

Within days Leo would receive what would be his first of 6 rounds of high dose chemotherapy, all of which were made for adult cancer, not pediatric cancer. It took us three long weeks to get home from that terrifying day we were first admitted to the hospital and we came home with Leo and to our then 8 year old daughter Lily late in the afternoon of Christmas Eve. It was not even 48 hours after we made it home that Leo would be re admitted to the hospital with an infection, as chemotherapy wipes out your blood counts and takes away the ability to fight infection or even a common cold.  It was apparent that Leo's life would be on lock down as we started to fight this monster of a disease....and that's exactly what we did.....we became Team Leo.

With every monthly admittance and round of chemo Leo did not let his obstacles deter him from walking or even Smashing cancer. We had biweekly inpatient and homecare physical therapy visits, posterior walkers and occasional occupational therapy....and wouldn't you know it, our Little Hulk stayed true to his name and took his very first steps in the middle of a round of chemo, hooked to an IV pole while inpatient just after his second birthday!  With the help of the best nurses, doctors, therapists, his dedicated grandparents, loving sister, mom, dad and the entire community behind him he was literally making great strides in his fight against cancer, but it would not come easily.

Leo would endure the 6 month induction phase of his treatment which consisted of 6 rounds of high dose chemotherapy and a 3 hour surgery for tumor resection and adrenalectomy. This was followed by what we thought was our most challenging phase of treatment, 30 days in isolation for his autologous stem cell transplant. The procedure that would give him a real chance at a new life. A procedure that completely drains his bone marrow and and counts to zero and then is transplanted with his own stem cells harvested four months prior to give his marrow a chance to start fresh.

Just a week or so later after isolation he would tackle 12 rounds of radiation under anesthesia every morning, and get back up on those strong little feet of his again for more every single day. He was nothing less than courageous and inspirational. After 8 months of inpatient treatment we had a small break and started Leo's newly FDA approved Immunotherapy treatment in August 2015. After all we had been through with him, the brutal rounds of chemo and radiation, painful mouth sores and nausea, weekly sterile dressing changes and hospital visits, tons of lumbar punctures and scans, countless meds and transfusions, a year of physical therapy and homecare we truly thought we were experts at our hospital life routine and were prepared for the next 6 months of treatment. 

As confident as we were, we certainly weren't prepared for what would end up being by far the most trying and difficult phase of Leo's treatment. Immunotherapy was turning out to be nearly unbearable for Leo and for all of us by his side. We watched as his vitals sky rocketed and plummeted daily, sometimes by the hour, through body tremmors and 107 temperatures covered in ice cloths. It was a nightmare to see him suffer so deeply, his body plump with 5 pounds of fluid retention and cherry red hives covering his head, face and body. Nothing in his body was functioning properly, and every day was a struggle to say the least, all of this torture to save his life. I haven't even mentioned that Leo was NED (No Evidence of Disease) since May 2015 after 5 rounds of chemo and surgery, prior to entering his 30 day stem cell transplant and still had months of this torturous treatment ahead. This is just how awful pediatric cancer is. You are left to fight it even when it's gone. 

Leo completed the remaining 6 months of treatment for a total of 14 months of inpatient treatment. It was only when he was finished in January 2016 that Leo would be considered in remission. That same month we enrolled Leo in a 2 year DFMO trial study for relapse prevention which he is currently still on and will complete in February 2018. Leo is now a sweet, silly, smart and rambunctious 4 year old celebrating just over a year and a half in remission from stage 4 cancer and OMS. He continues to be monitored with monthly labs, doctors visits and scans a couple of times a year. His battle gives us hope for a bright future, and high hopes for all of those fighting pediatric cancer.  We are eternally proud of Leo and grateful for the overwhelming support we have received since we started down this rocky road creeping up on nearly 3 years ago now.

I have learned so much since Leo's diagnosis. I have learned that cancer does not discriminate. Cancer does not care what color you are, what religion you practice, your gender or even your age. It comes in like a thief in the night and robs you of your sense of security and leaves you living in fear.  Cancer leaves a path of destruction in it's wake and every day we are left to pick up the pieces and put our lives back together one day at a time. All the while losing fellow friends in this fight that we have grown to love, they now watch over us from above. Some days are harder than others, most of them good these days, and we are slowly discovering how Leo's brutal treatments will affect him in the short and long term. We have been told it is likely he may never have kids of his own from his stem cell transplant, and that he can develop other types of cancer from all of the treatment and blood transfusions he received over his 14 months of treatment. We put these things in the back of our minds and tackle obstacles as they come, this is the aftermath of cancer treatment, and we discover different ways he's been affected by his time fighting this beast. This last May Leo had all twenty teeth filled and eight crowns put in because all of the enamel on his teeth was gone from chemo as well as some high frequency hearing loss. We have just caught up on vaccinations over the last 6 months, as he had to start over with all immunizations starting from infancy since his bone marrow was depleted, he had nothing left to protect him. He is currently in occupational therapy and is striving and thriving despite all he has had to endure......and he does it with a Hulk Smash and a smile!

Leo is small in size but big in personality and he impresses us every day with his strength and courage, it is truly inspiring. Cancer has taught my family so many things.  Much of it is scary and heartbreaking, but there is another side to every story.  There is always hope. Cancer has showed us pain beyond imagination forcing us to be stronger than we ever knew we were capable of. It has taught us the real meaning of suffering and what it truly means to LOVE deeply, ENDURE the painful and tumultuous unknown road ahead and OVERCOME fear and grief during the most difficult of times. We now know what true courage is, it is shown in the faces of our brave battling kids and their families with unwavering strength and determination. It is in fire and the fight deep inside you when battling it is your only option. We continue to celebrate Leo's remission every day, admiring him and his fellow warriors and their battle against pediatric cancer. We miss our friends that are now angels, we call them our forever friends and know that they are surrounding us in everything that is beautiful on this earth every single day. In the meantime we are grateful for every day and do our best to live in the moment, to embrace and appreciate this new life we've fought so hard to have. We are proud of our fight and our feist and have become a more unified, compassionate and loving family because of it. I never thought our lives would change so dramatically, even through the worst days it has surprisingly changed us in the best of ways....all because of our real life superhero, Leo the Little Hulk. HULK SMASH!  ♡ Love. Endure. Overcome. 

You can follow Leo on our Facebook page at facebook.com/TeamLeoLittleHulk/.

You may also donate towards Leo's medical bills at gofundme.com/TeamLeo