I am sure, many of you have heard the term, 'living life to the max'. Well dear friends, never a truer word spoken, when we had the honor of 'meeting' Max and the Mikulak family. Max truly lived life to the MAX!
Max's story
Max was born on June 30, 2001. He was diagnosed with stage IV, high-risk neuroblastoma in October 2004. He whizzed through frontline treatment and by the following summer was effectively on the road back to a "normal" life - albeit with almost total hearing loss, a new immune system, and about 10lbs to gain back, all courtesy of Mr. Chemo.
Unfortunately, Max relapsed (as most high-risk NB patients do) in November 2006. Max fought bravely, entering a clinical trial in Vermont where he received nifurtimox in combination with other chemo agents. This combination diminished the disease until there was just one tiny spot still evident on his spine.
But in February 2008 the beast came roaring back and we could never control it again, despite everything we tried. Max passed away on August 31, 2008 at 8:45pm in his mommy and daddy's bed.
Max Loved:
World War 2 airplanes
Star wars
legos
Video Games
Skateboards
Clone troopers
Ring of Fire
Bugs
His Mom and Dad
His big sister Hannah
Little Brother Nicky
and Naboo
I also wanted to post a beautiful tribute made to Max and his family in the news:
By Andy (Max's dad)
Family and friends gather to celebrate the life of beloved 7-year-old Max MikulakBy Catherine Kolonko
Family and friends gather to celebrate the life of beloved 7-year-old Max MikulakBy Catherine Kolonko
Young Max loved power and strength like any little boy. It gave him inspiration.
And so when a large contingent of his family and friends gathered at a Del Mar park Sunday to celebrate his short but full life, two biplanes plowed through the sky in a show of might that would make Max smile. Their engines roared and the crowd cheered and applauded for 7-year-old Max Mikulak who died recently after a 4-year battle with cancer.
“He was just a really sweet, nice little boy,” said Max’s mother Melissa Mikulak, who wore his Indiana Jones ball cap that he received in June for his birthday.
“It was a beautiful day,” the boy’s father, Andy Mikulak, said about the gathering in Max’s name. “Everything we wanted to happen obviously happened. It was the right way to honor him.”
In 2004 Max was diagnosed with high-risk Stage 4 neuroblastoma, an aggressive pediatric cancer that is difficult to cure. For about a year after traditional treatment the disease disappeared, but it returned in 2006.
The Mikulaks of Carmel Valley chronicled Max’s struggles and triumphs with his disease on an Internet blog read widely by family and friends and even strangers in other states. A video clip captured happier times of Max cheerfully singing “Ring of Fire” into a karaoke microphone. Then, sadly the couple posted this entry less than a week before he died on Aug. 31.
“Max is dying. He has been dying for some time, of course. Since 2004, he has been battling a cancer that had a terrible cure rate to start with, then he relapsed in 2006, then progressed this summer. Now, the neuroblastoma seems to be spreading rapidly to soft-tissue areas of his abdomen (liver, kidneys), despite continual treatment.”
Another post was a quote from Max’s sister Hannah.
“If I had a wish, I would wish that Max's cancer would go away and stay away forever."
The wish, no doubt, of everyone who came to Seagrove Park and shared laughter and some tears as they remembered Max that day. Most importantly, Max’s parents wanted a celebration of Max’s life and his good and loving nature, maintained until the end despite his painful struggles.
Two large photographs of a beaming Max flanked a microphone where several people spoke about the boy and how he touched their lives. Lisa Sturt, Max’s teacher at Solana Highlands Elementary, told the crowd that everyone who met him immediately fell in love with him.
“And how could one not? He was light and goodness and joy… an angel in our midst,” she said. His enthusiasm and smile were infectious, she said.
“If asked to do something, he’d respond, “Aye, aye Captain!”
All around the gathering there were symbols of Max and the things he loved. Many who attended wore orange, his favorite color. Others wore references to his favorite movies, “Star Wars and Indiana Jones.” A table held model airplanes, a toy train, treasure chest and dinosaur and photographs of a happy Max, including one with famous skater Tony Hawk in motion.
In another display of might, a trained hawk flew over onlookers and then perched in a nearby tree. For a finale, the meat-eating bird flew to its trainer and snatched a morsel from his hand. Earlier, Max’s fellow cub scouts performed a mock aerial salute. Each hoisted a toy jet above his head and marched as if in a missing man formation traditionally flown in memory of a fallen pilot.
Wanting to save his son and other children from cancer’s awful clutch, Andy Mikulak cofounded the MagicWater Project with Neil Hutchinson who also has a son with the same disease. It is a foundation dedicated to working with cancer researchers and oncologist to accelerate discoveries of potentially life-saving new drugs for children with relapsed neuroblastoma and medulloblastoma. The project funds clinical trials and other research on innovative, low toxicity treatments.
The day after the celebration for Max, a few hundred people participated in a walk in Balboa Park to raise money for the MagicWater Project. Just over $18,000 was collected from the fundraiser, which was sponsored by RealAge.com, Andy Mikulak’s employer.
More money is still coming in from the fundraiser and it will go toward the purchase of new imaging equipment at Rady Children’s Hospital that could provide quicker scans and results in the detection of cancer.
Andy Mikulak said he will turn his attention to raising the additional money needed to buy the scanner for Children’s Hospital, he said. While the money raised from the walk is symbolically significant it is only about 10 percent of the roughly $1.5 million estimated cost.
The Mikulaks plan to continue their efforts in the battle against childhood cancer and say they want their son to be remembered most of all for his loveable character.Although Max could behave like a typical boy there was never any meanness to him, recalled his father. Throughout his struggles Max was always happiest when everyone around him was happy.For Melissa, Max had a purpose that she wants others to remember: To live life to the fullest “because time is precious” she said. Then she repeated the words of encouragement so familiarly linked to their good-natured son, “We really did encourage him to live life to the max,” she said.
Max's amazing parents have started an inpsiring organisation called Max's Ring of Fire:
Max's Ring of Fire supports the work of Dr. Giselle Sholler at The University of Vermont Cancer Center. Dr. Sholler works tirelessly to find drugs which may someday cure children of this deadly disease.
Please go and visit their website :http://maxsringoffire.org for more details on how to donate, how to help, how to be a part of finding the cure for neuroblastoma and saving lives
Please also visit Max's blogspot which Andy and Melisa continue to keep up to date with their beautiful writings and memories and motivations to continue helping to fight toc ure neuroblastoma however you possibly can, please support
Max, you touched our hearts and our family more then we can describe, even though never ever personally meeting you , we were honored that your parents shared you with the world, and you will never be forgotten. We think of you so often and Tony Hawk and Skating and World War 2 Planes and Star Wars will also scream out your beautiful fighting spirit to us.
God Bless, continued support and prayers and love for you Mikulak family
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