From Hilary:
When Lauren was first diagnosed, it bothered me when people would say, “I will appreciate my child more.” Who wants to be the example for someone else to appreciate what they have? I just wanted a normal life for me and my family.
Beautiful Little Luke wasn't even a year old when we met him and his family this past summer. His family was in the process of learning that their son had a stage 4 neuroblastoma, a very aggressive form of cancer. Under normal circumstances, we would have never have known each, but due to our circumstances, seeing each other in the hospital, in the play room and in McDonalds every day, you are not only drawn to towards each other, but you become family. In the very beginning of our ordeal, a mother of a young son who was also battling cancer, told us that we are all in this together and we really are. Knowing what each other is going through, how can you not reach out to give and receive each other's support, compassion, friendship, concern and love? Once Luke had started his treatment, things started to look so promising. His treatment was working and he was able to have the surgery to remove his tumor that only a few months ago they were not able to perform. I remember seeing the look of concern and nervousness on Luke's mother's face as she was standing outside the waiting room while he was undergoing his 7-hour surgery (we’ve been there before). We were so happy and relieved to hear that the surgery was a success and that the doctors were able to remove 99% of the tumor. It felt good. We are all on the same team and it seemed like, with the help of the doctors and medicine, we were beating it. We had HOPE. But five weeks later, just before Luke was set to begin his tough chemo treatment, we read on his CaringBridge site that a CT scan revealed that the tumor had already grown back, which meant that the tumor was super aggressive and it was again wrapped around his aorta. Because of the aggressive nature of his cancer, they were told there was nothing more that could be done except to enjoy the precious time they have left. And they did. Mom (Laura), Dad (John), and 4-year-old sister Gracie celebrated every moment of his precious life that they had been given with Luke.
Beautiful, sweet, precious angel Luke Piersol passed away on Saturday. He was just over 16 months. We, the Nihei family, are so thankful that God brought Luke into our lives. We know that we will not know the reason why this little life was taken so quickly, but we are comforted by the fact that our little Brooke is playing with Luke in heaven now. We will miss Luke and his family. CHLA will not be the same without him nor will our lives ever be the same.
I now realize that I want everybody to use us and the people we have met, as examples for you to hold your children a little longer, kiss them more often, stop and sing a song with them, laugh with them, and just love them even when they are driving you crazy.
Cancer can strike anyone at any time. There is no warning and once you get the news, there is no going back. Your life is turned upside down and you are thrown into a battle you never asked, or imagined being in. For some, once they find out they have cancer, they may spend months in the hospital, never to go outside and breath the fresh air, or feel the sun on their skin. Their mother may never truly get to hold them, or kiss them again since they are required to wear masks and gowns. Every day is a worry and even the slightest discomfort your child may have, could mean something serious. Cancer doesn't care what age you are, what you have done in your life, your sex, ethnicity, religion. It does not discriminate.
For some unexplainable reason we are examples and I accept it now. So please use us, use Luke to “really” appreciate every moment you have with your loved ones, especially your children, because each moment, even a trip to the grocery store with them fighting, is a precious gift from God that should not be wasted.
UPDATE:
Lauren and Kiera got their ears pierced yesterday. Neither girls cried. They both said it didn’t hurt at all. Lauren did tell me that Uncle Mike's (Kiera's dad) eyebrow was pierced and that Auntie Vicky's ears were pierced from the bottom all the way to the top. That Auntie Vicky (Orange County), Auntie Say Say(Orange County), and Nurse Karen (west L.A) have tattoos. And they talk about the Inland Empire. Shish!!
Lauren starts school today (this afternoon). I asked her if she was excited. She said she is a little nervous. She did wake up early this morning and asked mommy to take her to Starbucks. Which kinda offended daddy, since that is daddy's and Lauren special thing we do on the weekends. Hilary thinks it's because Lauren is excited about showing daddy's girlfriend, I mean, the Starbucks' barista, her pierced ears.
The Nihei's: Our Story
On April 1, 2008, our 4-year-old daughter, Lauren, was diagnosed with a brain tumor. After her biopsy on April 8th it was determined that she had a bithalamic anaplastic astrocytoma with extension into her brain stem.
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
Tuesday, February 3, 2009
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