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 (created by Malia's dad, Glen 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!

Guestbook

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DFMO 
Posted on September 3rd, 2012 (12:04 pm)

I just wanted to say hello as our 9-yr-old daughter Ashley is also on the Phase II DFMO trial through Dr. Sholler. On August 15th, she took her first dose and so far, so good!! 8) Lisa Holden, a fellow NB mom from our home hospital at UNC, directed us to your site. Her daughter Melaney and my daughter Ashley had similar cases at diagnosis and it's been nice to get to know their family. Just wanted to reach out real quick and let you know that you can find our story and updates on www.ashleyburnette.com. Sending you all much love and hope that this DFMO treatment will continue to keep our girls safe and sound!!!

Nicole Burnette
Crushing Cancer 
Posted on August 4th, 2012 (10:30 am)

Hi Malia, I heard that there is no cancer in your body anymore and at the moment you are cancer-free. I am still praying that it won't come back and it will stay gone forever! I am so proud of you and I know you will go far!

Alex F
Triathlon 
Posted on July 24th, 2012 (7:08 pm)

Malia,
My friends and I are doing your triathlon together, and we are going to help you crush your cancer hard! I hope you are doing well and best wishes :) God Bless,
Julia L

Julia L
malia you are so strong 
Posted on July 18th, 2012 (8:55 pm)

hello malia and her family you are so strong i wuv you you are so nice and cute

elizabeth buron
Malia Crushes Cancer 
Posted on July 10th, 2012 (7:01 pm)

I'm all signed up and training for your triathlon event to tribute to you your crusade to crush cancer and hear about you getting cured somday soon.

Salvatore F. Lanzofano
Angles 
Posted on July 4th, 2012 (7:37 pm)

  I sent an angel to watch over you
last night but it came back.  I
  asked "why?"  The angel said "angels don't watch over angels.  Twenty
  angels are in YOUR world.  Ten of them are sleeping, nine are playing, and 
  one is reading this message.
  
God has seen you struggling with something. God says it's over. A
  blessing is coming your way. 

We wish you all the best as Malia continues to fight this TERRIBLE disease. And Malia... I know you are gonna CRUSH that cancer so hard, it will run so far away that you will NEVER see it again! 
*** I have been following Malia's story for some time now, and have fallen in LOVE with how brave and strong she is and just wanted to wish you all the best... Good luck!
 And happy (belated) birthday, Malia!!             



Alexandra

Alexandra E.
 
Posted on June 28th, 2012 (5:56 pm)

Happy Birthday Malia! God bless you and I hope all of your birthday wishes come true!!!!!!!!!!!!!

Julia
Happy Birthday Malia! 
Posted on June 26th, 2012 (4:03 pm)

I hope you have an AWESOME birthday and get all the cards you are hoping for! God Bless you...many blessings are headed your way. I don't know you but I do work at Lilly. Your story touches my heart though.

Kristi Kain
Happy Birthday! 
Posted on June 25th, 2012 (10:34 pm)

We received the birthday flyer in our local paper, but have been a bit disorganized and didn't send a card. Please know that our family is cheering you on and hoping that you have a wonderful birthday! All the best, The Burns Family, Brookfield (soon to be Sturbridge)

The Burns Family
 
Posted on June 7th, 2012 (4:54 pm)

Malia,
I know it is a little late, but I wanted you to know how happy I was to see you when you visited DMS a few weeks ago! You looked stunning in you Ariel dress, and you did a fabulous job gluing your disney characters to your paper. You looked so cute when you sent up those balloons... They will go far, just like you.
Love always,
Julia L

Julia

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