Lucia's Story
Those of you who know Lucia were aware that she was battling a horrible enemy - cancer. You also know that Lucia is quite the warrior princess and that her positive spirit and "go forward, don't look back" attitude will be an inspiration to everyone. Many of you were sure that she'd make it through this. Well... here is the real story.
Princess Lucia had a rare and aggressive form of brain cancer called glioblastoma multiforme stage IV. She needed immediate brain surgery followed by six weeks of intense radiation and chemotherapy. The chemotherapy was to continue for at least a year! (You would think that if the treatment is planned for a year that she had at least a year to live).
No sooner does the first course of radiation and chemo end, another tumor appeared around her right eye. It swelled up like she got hit with a baseball. The glioblastoma had now morphed into an even more rare and aggressive tumor, an atypical teratoid rhabdoid tumor (ATRT).
Still smiling, our little angel. Went to the hospital the next day and never came home again.
Due to the location in the eye socket/sinus they could not operate this time. Her only hope to "buy her some time" (stick a knife in my heart why don't you) was more radiation and chemotherapy. She even had to have weekly lumbar punctures (spinal taps - big, long needles in her skinny, little spine to inject more poison, I mean chemo).
The doctors and nurses at Sloane Kettering Memorial Hospital went to work, using every trick in the book (problem is, the book needs to be rewritten) to eradicate Lucia’s tumor. I will never forget the words, "I will treat her as if she were my own child". Those words kept us going. Lucia underwent 5 more weeks of radiation treatments, as well as high-dose chemotherapy.
Her beautiful, curly, brown hair fell out, her lean, muscular body wasted to skin and bones, and she threw up so often that all she had to say was "bucket" and someone came running.
At one point the treatment had to be halted because the side effects from the chemo were so severe that she became dangerously anemic, needed blood transfusions and she started to lose hearing — but as we were approaching the finish line we noticed that the bridge of her nose seemed wider and her right cheek was swollen. Guess what? More tumors emerged in her brain. This cancer was laughing at us!
No matter what we did as soon as one tumor was killed off, more would pop up. When it was clear nothing more could be done to cure her, we stopped treatment.
She used a wheelchair because she could no longer walk. Soon, her sight failed and she spoke less and less. Eventually, she struggled to breathe on her own but still the Princess Warrior hung on. We vowed to take care of her and keep her comfortable, so we had a respirator placed. We cuddled, watched SpongeBob and waited for direction from God and Lucia.
Eventually neurological tests and a CAT scan confirmed that Loosh Kaboosh (this kid has many nicknames, okay) was ready to go to Heaven and be God's angel. We removed all tubes and machinery and kissed her pretty face one last time.
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Lucia’s legacy speaks volumes about her loving and unselfish nature. Never did she complain, never did she whine.
She even asked if she could do some volunteer work at the ASPCA and read to the blind.
At 8 years old, she showed more courage and good grace than most adults. Not once did she say, "Why me?"
Well, like I said, Lucia's a better person than I am, because I constantly ask, "Why her?"
That's enough for now, I've run out of Kleenex. Can you appreciate the pain I'm feeling writing this? Trust me, if I didn't feel it was critical to do something about this, I would stay under my rock and wallow but I also know that Lucia's watching and I need to do the right thing.
I may never get the answer to why Lucia, but one thing is for sure, the next kid, and there will be a next kid, might be yours. Please contribute what you can, be it money, time or skill.
