***** NEW UPDATE ON KIMI *****
Recent MRI discovered new tumors along Kimi's spine. The largest of these is compressing her spinal cord. This originally caused severe pain for Kimi, but we were able to get that under control.
Then the tumor began causing a loss of strength and feeling in both of Kimi's legs. Surgery was an option but was considered too risky without any certainty of improvement. Plus, we needed to immediately address the other tumors and "hot spots." She completed a week of radiation, then a week of a chemotherapy/antibody treatment.
There has been no improvement in her legs. Kimi is unable to stand or walk. The doctors believe that this will be permanent. Kimi will most likely spend the rest of her life in a wheelchair.
We are devastated, but I am confident that Kimi will tackle this challenge like she has all the others - with determination, resilience, confidence, and a zest for life. She will not be defeated...!!!
BUT, she cannot do it alone. Each and every day in our new reality is a learning experience. Special accommodations for the handicapped, wheelchairs, etc. We need to move to a new apartment. The list goes on.
WE need your help...!!! It will truly "take a village' to help Kimi through the long difficult journey that lies ahead.
My heart breaks for the girl who loves to dance, swim, boogie board, and ride her bike. All that has been taken away.
However, with your help, Kimi will learn to still Live life to the fullest.
We are grateful and humbled by your continuing love, support, and generosity...!!!
Kimi is an amazing 12-year old girl who has been bravely battling NEUROBLASTOMA for EIGHT years. Through it all, she has maintained an incredibly positive and joyful attitude. She is truly an inspiration to all who are fortunate to enter her life.
Recently, though, we have hit another obstacle. In November 2017, we learned that Kimi had relapsed for the THIRD time...!!! We were once again devastated that the cancer had returned and Kimi would need to rise up and battle NB head on yet again.
New treatments were started right away. Most involved regular travel to Memorial Sloan Kettering Cancer Center in New York City. Some could be done at our home hospital - Rady Children's Hospital San Diego.
Despite new aggressive treatments, scans in July showed that the cancer had started to spread even further.
Kimi continues to fight with a smile on her face and joy in her heart. She is excited to start 7th grade this year - she loves school and is a straight A student.
As you might imagine, a child's cancer diagnosis is devastating to a family. It has been an extremely challenging and difficult 8 years, with many highs and lows. Through it all, and going forward, we will never give up hope. Kimi is a fighter and the strongest, bravest person I know.
SHE WILL BEAT NEUROBLASTOMA....!!!
But...we need your help. This journey has taken its toll on us in many ways...but especially financially, as you can imagine. As a single father, caring for Kimi is a full-time job. I have not been able to work for a few years now. The list of expenses is extensive and growing....medical, insurance premiums, rent, food, gas, travel for treatment, extended stays in NYC, and so on.
Please help Kimi in her inspiring fight against cancer!!! Because no child can fight cancer alone.
More on Kimi's journey:
In September 2010, at only 4 years old, Kimi was diagnosed with high-risk Stage 4 Neuroblastoma. This is an aggressive pediatric cancer of the peripheral nervous system. Initially she was given only a 50 percent chance of surviving this disease. Obviously, they did not realize who they were dealing with!
For the next 18 months she endured an intensive treatment regimen that included multiple rounds of high-dose chemotherapy, a major tumor resection surgery, a stem cell transplant, radiation, and immunotherapy. All of her suffering and hard work paid of. She achieved remission in December 2012.
Kimi enjoyed a new life off treatment. She started Kindergarten and began to resume the life of a normal child.
However, her cancer had other plans. After two-and-a-half wonderful years of remission, the Neuroblastoma once again reared its ugly head. Kimi relapsed in May of 2014. This was a shock to us all and extremely upsetting, as we knew that Kimi would have to once again endure some very difficult treatments. But, in typical Kimi fashion, she did not get upset or feel sorry for herself. She merely said, “Daddy, I beat it once, I can do it again. Let’s go…”
And she did beat it again., to no one’s surprise. However, Neuroblastoma is a nasty, aggressive, and sneaky form of cancer. Kimi relapsed again for the second time in June of 2015. She is currently still in active treatment as she bravely battles to achieve remission one more time. As always, there is no doubt that she will once again conquer this horrible disease.
Obviously, cancer is a big part of our lives in so many ways. However, at no time does Kimi ever let her cancer in any way define who she is or what she will be able to accomplish.
Kimi and her personality and spirit are bigger and stronger than any cancer. Throughout this entire journey - through all the extended hospital stays, the nausea, the pain, the hair loss, and most importantly, the loss of a significant part of her childhood - she never complained. She embraced her battle with a smile, bravery, and positive attitude that is well beyond her years.
Her strength and courage continue to inspire me each and every day. There is a saying…”If you have ever seen a child fighting cancer, it will change your life forever.”
I know this is true in Kimi’s case.
Despite all her ongoing treatments and the collateral damage, Kimi continues to live her life with love and joy. Despite all the setbacks, she continues to excel in school. Last year she was even elected President of the Student Council at her elementary school.
She relishes in just being a kid. She loves to sing and dance. She takes guitar lessons and ballet classes. Her goal is to dance in The Nutcracker next Christmas. She is a total adrenaline junkie - she loves roller coasters, rock climbing, and zip lines. One day she wants to go skydiving and bungee jumping. She loves to swim and going to the beach. She could spend hours riding her boogie board - the bigger the waves, the better.
The most beautiful thing about Kimi is her never-ending desire to spread joy and laughter to others. She is always trying to cheer up the other kids at the hospital. She recently undertook a band-aid drive, all on her own, so that the other kids would always have cool, fun band-aids.
When we are inpatient, despite her multiple negative side effects, her room is often filled with laughter and singing. Many nurses and visitors stop by “Kimi’s Salon” to get their nails painted. Her nurses and doctors are also expected to join her in a round of karaoke. She is always working on various crafts, which she gives away to others when finished.
Her story will continue as she moves on through her journey. She has high ambitions and many lofty goals she wants to achieve. Cancer will be but one obstacle that she overcomes. Her spirit, joy, and love of life have proven that she has already beaten cancer.
Most recently, we learned in November 2017 that Kimi had relapsed for the third time. While this was once again heartbreaking, it has not softened our resolve to fight and conquer this beast. We have not lost hope, we will never lose hope!
We are optimistic that Kimi will be able to start a new and promising clinical trial in the near future. We will fight on! As always, I know she will take on this new challenge with courage and a smile on her face.She has started Middle School this year and so far she is relishing all the new challenges. She eve made the Honor Roll.
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