KSON Going Gold for Parker Shaw

September 19, 2016

Parker's journey started at the age of 6 1/2 years old in March of 2013 when he had an injury to his left hip. Over the next 2 weeks Parkers pain continued on and off and new symptoms were appearing daily. He was now waking up at night complaining his legs hurt, and then he was sent home from school with a low grade fever. My husband and I decided he needed to be seen by our pediatrician, however, cancer wasn't even a thought in our head. Our pediatrician agreed that Parkers symptoms were weird and we both agreed he needed labs  and an x-ray to start. That evening at 9:40 pm my phone rang with the pediatricians number on the caller ID. My heart sank at what this may have meant. He told us that the x-ray of his hip was fine, but his labs did show that there may be some sort of infection somewhere in his body. He wanted us to get a CT scan to confirm, but informed me that it would take a couple of days to schedule. We agreed to wait unless symptoms became worse.

On April 10, 2013 I was awakened at 5 AM by Parkers cry, a painful cry that hurt my heart. I knew something just wasn't right. I decided it was time to go to the ER to get to the bottom of these weird symptoms and lab results. When we arrived in the ER at Rady Children's Hospital in San Diego it was strangely quiet, not a patient in sight. The doctor actually met us in triage and started to ask what Parker needed to be seen for. I told her about his symptoms and labs and although she thought he looked great she agreed to get a neck to pelvis MRI because the labs were off. Parker and I waited in patiently in our small room. I tried to make him laugh and pretend I wasn't scared, but I was. A couple hours later the doctor came in our room, her eyes red, swollen as if she had been crying. My heart sank awaiting her words. The doctor reluctantly explained that there was a large mass found on Parkers left kidney. I am an RN and immediately my mind was racing through every disease I had ever learned about in my 7 years of practice. I was stumped!

I called our family to come and when my husband arrived the social worker took Parker to play while we met with an Oncologist. The oncologist explained that they were 99% sure Parker had Neuroblastoma, a solid tumor cancer that forms from immature nerve cells. This cancer is commonly found in the adrenal glands located above the kidney and often in very advanced stages before symptoms appear. We were terrified, and the rest of that day is still a blur. That evening we were taken to the inpatient Oncology floor where we remained for the next month. Parker went through numerous scans, tests, labs, bone marrows and so much before it was confirmed he did in fact have Stage 4 Neuroblastoma. His disease started on his left adrenal gland, but had metastasized to several bones and 87% of his bone marrow. We were told that his chances of survival were about 20%, but in our hearts we knew that somebody always beats a statistic, and why not him!!

Over the next several weeks our community, friends and family rallied in a way we had never seen before. We knew that we were covered in prayer. We chose to trust God and live graciously for each day that we had together.

During our first month stay my husband was contacted by a local family whose son had stage 4 Neuroblastoma, he is a survivor, his name is Aiden. He became our hope on very dark days and his family helped us to get in touch with Memorial Sloan Kettering Cancer Center (MSKCC) in NYC. This hospital has a team of 4 doctors who only treat Neuroblastoma. With the help of so many, funds were raised and we were able to get our son to NY. The doctors at MSKCC are experts in this field and we felt we were giving our son the best chance of survival by transferring his care. Over the next 10 months Parker endured a 10 hour tumor resection, 8 rounds of chemotherapy, 14 rounds of radiation, 10 cycles of a painful mouse antibody called 3F8, and finally 500,000,000 Natural Killer cells from his daddy.

On January 10, 2014 we got the news that brought us to our knees in thanks, Parker was NED (no evidence of disease). Although we were so happy, we were informed. We knew that more than 60% of kids fighting stage 4 Neuroblastoma relapse within the first 2 years after reaching NED. We decided to get into a clinical trial based out of Michigan. Parker is currently on this trial with 7 months remaining. He has been Cancer free for more than 2 1/2 years.

During Parkers intense battle with cancer we were surrounded by more love and support than we could fathom, we wanted to give that same support to families facing an uncertain journey. In 2013 the Team Parker for Life Foundation was formed to do just that. Our mission is to provide financial assistance to families with children battling cancer and to fund life saving research aimed to solve kids cancer. We host events and fundraisers throughout the year to meet the financial needs of our programs, but also to unite as a community and raise awareness for this horrific disease. We want everyone from professional sporting leagues, government officials, including the President of the United States to recognize and support childhood cancer the way other diseases are supported!! We are on a quest to "GO GOLD!" year round.

Learn more about Parker on his website TeamParker4Life.org

Parker's mom, Crystal, chated with us about how Team Parker 4 Life is helping other children battling cancer:

KSON Going Gold for Parker Shaw