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Please share his story. There needs to be a cure.
Alec spent 140 in the hospital then had in home nurse care from March 09 until he passed 7/22/09.
All of us have a purpose in life. Many of us wander through life unable to find that purpose; some are lucky enough to find it. Alexander had a purpose through God. He inspired, brought people together from all over the world to help them understand life is a gift, and that there is a greater cause in life than one's self. Alec has the ability to bring light into darkness, pain into joy, and fear into triumph. He has conquered all fears in 3 years that many of us could never endure or ever face. Alec has left a footprint on people’s hearts that will never be forgotten.
Alexander "Alec" Bay Martinez passed peacefully at 11:42pm July 22nd, 2009 with family and friends by his side and in the arms of his Mother.
There is no script or instruction to prepare you for losing a child. Alec is God's child and God put Alec on this earth to teach us about life, family, love and perspective. Alec is beautiful in every way imaginable. He is the epitome of courage, will, strength and love. The most beautiful cannot be seen nor touched, they are most felt in the heart. His life should be told, cherished and remembered.
Alexander was a true creation of God. Alec, as we call him, was a miracle baby. Alec brought my wife and I together after 5 years of being apart. He was a true blessing and the diamond of our small but strong family. Alec was "out of the ordinary" when it came to size and will. First off, he didn't want to come out from his mother's womb. After 32 hours of labor and 1 1/2 hours of pushing, the doctor decided to do a C-section. It didn't stop there, he grew and grew. The doctors thought he might be gigantic so we had him checked out by a couple of specialists. Nothing wrong, he is just big and tall. Wonder where he got that from? The doctor said Alexander is going to be between 6'6' and 7'0 tall. At 2 he is the size of a 5 year old. But he is still just a baby. He had been as healthy as a horse and would eat like one too. He would eat more than my wife at times. When his mother got cancer this year, Stage IIIc Ovarian Cancer, it was hard for him as they are so close. Still the bumping and crashing into things continued. A loose cannon if you will. Then things started to change. Alec became very whinny. All the time he would whine. We thought this was normal, right? Then one Sunday he bumped his head on a granite table corner. The following Tuesday I noticed him tossing and turning in his sleep and arching his back. This happened again Wed night. Concussion? Thursday, his mother took him to see his doctor. The doctor said he looked fine, no need for a CT. Thursday he no longer wanted to play just lay down. Friday more of the same then he started to say "head hurts", but was pointing to the back of his head and not the side where he bumped it. Saturday things continued to be more of the same and then he started to arch both his neck and back while he walked. We called the doctor and brought him to the ER Sunday a.m. Thinking it might be spinal meningitis, the doctors took a CT scan. It was a tumor. We were rushed to Emanual Children's Hospital. There we met Dr Monica Wehby, a renowned Pediatric Neurosurgeon. The tumor had caused the brain to swell and blocked the fluid that drains to the spine therefore causing baby Alec severe pain. She drilled a hole in his head to drain the fluid. He had surgery 2 days later to remove the tumor. Well what they could. The on-site pathologist thought it was a Brain Stem Glioma and therefore didn't remove all of it due to risk. Final path came back it was actually a Ependymoma. Type of tumor is very, very rare.
There are 100-200 children diagnosed each year with this type of tumor. Very rare when you consider how many children there are in the U.S. As result, Alec had another surgery Tuesday 12/2 to extract the rest of the tumor. They could get all of the tumor since they thought it was in brain stem and there is a risk that there may be complications or possibly brain damage due to where the rest of it is located. We had the discussion and believe its worth the risk as it increases his survival rate. The tumor had been considered low grade. Unfortunately, there has been less than positive results in how it responds to chemo, but focal radiation has shown much success. The problems is that he was 2 years old and radiation at this age could cause long-term learning deficits to say the least. The current plan is to treat with chemo until he is 3 to delay, then to undergo radiation. But is lesser for those who cannot have the tumor completely removed. Again, we just want you to share Alec's story with others to help make awareness of the disease and that you keep sending your prayers and good thoughts to our son. A tribute to our son. He has many rivers to cross. http://www.youtube.com/watch?v=U3AZVduzLsA