On April 1, 2011, it was official: 2 ½-year-old Malia Dakota Jusczyk’s carefree life of Disney World and pony rides, soccer practice and swimming pools, came to a grinding halt. A CT scan revealed that Malia’s recent “tummy aches” were caused by a large tumor lodged in her abdomen. The solid mass wrapped around major blood vessels and pushed against her kidney and aorta.
A biopsy confirmed that Malia has a very aggressive childhood cancer known as stage IV (high risk) neuroblastoma. The cancer had metastasized into her bones and bone marrow (cranium, humerus, and femur). Immediately after the debilitating diagnosis, Malia’s parents, Megan and Glen, left Orlando, Florida in order to provide their daughter with the best treatment currently available to her at the Children’s Hospital/Dana-Farber Jimmy Fund Clinic in Boston, Massachusetts.
To survive, Malia’s little body had to endure six rounds of chemo, nine hours of tumor resection surgery, a stem cell transplant, removal of a kidney and an adrenal gland, twelve rounds of proton radiation, countless blood transfusions, and immunotherapy.
We are thrilled to share that as of July 2012, Malia has been declared NED (No Evidence of Disease). Yay!! However, since the rate of relapse with neuroblastoma is so high (and since there is no cure once a child relapses), we have entered her in a two-year-long remission trial, which utilizes a medication called DFMO 2/day and includes scans every three months as well as monthly oncology appointments.
Malia, like all children diagnosed with this awful disease, has shown an unbelievable strength and willpower throughout her treatment. We are thankful for every single day we get with our beautiful daughter!
Unfortunately, many parents can’t say the same. The fact remains that every sixteen hours a child dies from neuroblastoma, and although cancer is the number one disease killer of our children, only 3.8% of cancer research funding goes toward pediatric cancer. That is why we have chosen to expand the non-profit, For Kids’ Sake (co-created by Glen and Megan Jusczyk), to raise money for neuroblastoma research as well as for families of children diagnosed with neuroblastoma.
According to the Neuroblastoma Children’s Cancer Society: “For families affected by neuroblastoma, the medical costs alone typically exceed $500,000 with many costs not covered by health insurance, this experience can devastate a family financially.”
Please consider donating to this very worthy cause and helping more children crush cancer!