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This fundraiser ended on 12/07/12

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Family and friends of Natalie are raising money as she fights for her life against Langerhan's Cell Histiocytosis (LCH).

Natalie Rose DOB: 11/30/2010

In early 2012, Natalie had a small lump on her head above her left ear. After a couple of trips to the pediatrician, with assurances to the family that it was just a “gland” that would go away, the family remained concerned. Natalie had been a bit lethargic and acting strange. As the “gland” grew, Natalie’s parents insisted that there must be something more wrong and the pediatrician finally recommended getting it removed. The workup that followed showed that it was not a gland or a cyst, but a lesion (or tumor). This was also confirmed through her blood work, which revealed bone matter in the blood. The lesion on her skull was actually eating away at the bone. CT scans and MRIs revealed several more lesions: ribs (both sides), lung, brain and arm.

It was resolved that Natalie had an extremely rare (3 in 1 million births) blood disorder, recently classified a cancer, known as Langerhan’s Cell Histiocytosis, or LCH. There are two types of LCH, single-system or multi-system. Natalie has multi-system, which is much worse as it affects multiple body organs. The pediatrician wept as she explained the situation. Not at all a good sign.  This nasty disease attacks the body, and is literally eating away at Natalie’s organs and bones, from the inside out.

The first step: removal of the skull lesion:

The neurosurgeon removed the lesion, but since it had been eroding her skull, a bone graft was necessary to replace the damage. They took the bone from other areas of Nat’s skull.

The second step:Surgical installation of a life-port inside Nat’s chest.

The port is used to administer chemotherapy while allowing blood to be drawn without constant needles. A tube runs from her port, through her veins into her neck.

The third step: Chemotherapy and later more aggressive chemotherapy

Six weeks of chemotherapy would follow, and how Natalie responded to this therapy would determine her next treatments, as well as her chances of survival. The results were poor. The initial regimen really called for 12 weeks of chemo, so chemo continued for another 6 weeks. Again, results were poor. The condition worsened. Lesions grew larger and the spleen became affected. Natalie’s gall bladder collapsed. It was affecting her pulmonary functions, her brain, her liver, and her spleen. In addition, the lesion on her right rib eroded the third rib almost entirely.

The fourth step: Salvage Therapy

At this point, a “salvage therapy” was called for. Doctors from Westchester Medical and Sloane-Kettering concurred that this treatment was necessary to save Natalie’s life. Cycles of ten days in the hospital are required to administer aggressive doses of chemotherapy, blood transfusions, etc. to try and knock this thing out. After a two-week break, another 10 day round in the hospital is repeated.  This is where Natalie is now. Hair loss is apparent. Her immune system is weak. A mask is required if she leaves her hospital room/home, but she refuses to wear it.

The fifth step: Stem-cell transplant

At the end of salvage therapy, right around Natalie’s 2nd birthday, the doctor’s will perform a stem-cell transplant. The surgery alone has a 70% survival rate, but it is necessary because Natalie’s chances are far less without it. If successful, Natalie may be able to go on and have a reasonably normal life.

A Miracle?

Chances were extremely low that there would be a match for Nat’s transplant. She would have to go on a national waiting list. The best chance of a donor match for Natalie would be from a full sibling, of which Natalie had none. Through good fortune and the grace of God, a baby sister, Cadence, was born on October 9, 2012. Her umbilical cord was sent off for testing to determine a match, and we all eagerly await the results.

Natalie has spent the better part of the last few months inside the hospital’s infusion center. Her mother and father, Kaitlyn Caudy and Brian Brennan, have been there beside her 24 hours a day, 7 days a week. Neither of them are able to afford this treatment, nor do they have the ability to sustain themselves while caring for Natalie.

We are asking for help.

The stem cell transplant will be an out-of-pocket expense, which is the primary reason for this fund-raiser. Any additional funds will go to help with food and other health-related expenses. As you can imagine, with a newborn to care for as well, the family's stress and financial responsibilities have increased substantially.

Kaitlyn is my eldest daughter. Formerly the prima donna of the Caudy family, she has taken this shock, this tragic hand of bad luck, and handled it with grace and maturity far beyond what I could ever even do myself. The amount of work and care and dedication that Natalie and her new baby sister require (at the same time!) is mind blowing, and she does it all with a smile. She’s a proud mom. And my wife Jennifer and I could not be prouder of our amazing daughter and her fiance, Brian Brennan. I wish we could personally do more financially, but we can’t. As a result, you are reading this page.

We hope you can help Natalie as she battles this awful disease.

Best,

Rob & Jen Caudy

See Updates below, and join us on the "Friends of Natalie" Facebook page.

P.S. Also, a special thanks to Nat's other grandparents, Richie "Bones" and Denise Brennan.  We are all so blessed to be a part of this amazing extended family.  Blessed indeed.

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