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Facts. Truth. Understanding.

Facts. Truth. Understanding.

Facts. Truth. Understanding.Facts. Truth. Understanding.

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This is my story.

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(This was written for an article)

April 21st 1988 4:20am Amanda Rose Ferraro was born. Without being placed in the arms of her parents she was whisked away to the neo natal intensive care unit. At just moments old Amanda was diagnosed with Double Pneumonia. Her first significant one-on-one time with her parents was from an incubator burdened with tubes and wires surrounding her.

When Amanda was just 8 years old she started having headaches and blurry vision which led her parents to begin the search for answers as to what was the cause. In October of 1996 Amanda had her first brain surgery. She was found to have an arachnoid cyst on her cerebellum. A stent was placed and that was to be the fix of her headaches.

During the course of 10 years Amanda would experience a headache here and there but nothing to the extent that made her senior year in high school so lousy. The headaches were so bad and unbearable Amanda was in the doctor’s office and hospital it seemed once a week. In the summer of 2006 a risky “blind eye” surgery was performed to reveal that the stent was clogged and Amanda’s brain was filled with pressure. The cyst ruptured and the doctors tied the cyst into the fourth ventricle of her brain. While the surgery was performed the doctors had nicked one of her optical nerves leaving Amanda with permanent double vision.

Although at the time the surgery seemed a success, within the matter of 6 months Amanda was experiencing headaches all over again. With CT scans and MRI’s done the doctors went back in for her third brain surgery. The opening to drain the cyst into the brain had closed naturally and was causing built up pressure. They then tried a different technique so the CSF fluid would be able to drain properly. Amanda was then diagnosed with Access Hydrocephalus.

In 2008 the headache were not any better so Amanda and her parents had looked into new doctors and found one who was set to perform a full VP shunt that would drain the access fluid off of her brain so she wouldn’t suffer with migraines on top of pressure on her brain. November 2008 the VP shunt was placed. After a week there was a huge issue, it was over draining. Meaning that it was draining the fluid way too much and her brain could not function. The severe pain of over drainage was too much for her. A month later in December 2008 a valve was placed and a setting was set so that Amanda’s brain was able to drain the access fluid but able to function with the amount of pressure she needed.

Over the next 3 years Amanda had some complications with headaches and migraines so she continued her search in finding the best doctor available. In 2011 she got lucky. Her VP shunt was not working properly and needed to be replaced so Amanda and her family got ready for that surgery. This was a very big surgery. The old shunt was taken out and the new one was placed in the brain along with a new programmable valve and because Amanda was having trouble with her stomach they decided to put her line in through her jugular so now Amanda has a VA shunt.

In 2013 was her 7th surgery, Amanda was 16 weeks pregnant with her son Isaac. Her shunt was scraping the right atrium of her heart. She was put under with baby in tow and her shunt was shortened.

On December 24th 2013 Amanda’s son Isaac was born.

Throughout March of 2017 Amanda had been to the emergency room for feeling weak and fatigued. She was told she had mono and to rest and that she would feel better soon. She then went back to the emergency room on May 16th of 2017 and was transferred to OCM on May 17th. The following day the doctors decided with her blast count so high her best chance at a great fight was at Robert Wood Johnson University Hospital. On May 18th 2017 Amanda was diagnosed with Acute Myeloid Leukemia. Her first round of chemotherapy started on May 20th and lasted 7 days. She was given two types of chemo for the first three days and the remaining four days was a continuous drip that was 24/7. During her Hospital stay she needed to have an emergency appendectomy because she had an acute appendicitis. The doctors were hesitant because of her condition her numbers were very low but since she needed the surgery Amanda was given platelets before and during the surgery . She made it through her surgery and continued her chemotherapy treatment. While in the hospital her hair started falling out, her taste buds changed, her vision got worse, and she started to feel lots of pain. But Amanda is a fighter. She has never let anything stop her and she does it all with a big smile on her face. 

After reaching remission for her first cancer treatment Amanda relapsed on September 11th 2018. Although it was a devastating shock to everyone in her family, Amanda went back to the hospital for a second battle with cancer. Again, she was in the hospital for weeks at a time. But, this time was different because Amanda needed to have a stem cell transplant. Amanda’s doctors searched the Bone Marrow Donor registry and was able to find a donor for her. On November 28th, 2018 Amanda underwent a stem cell transplant. Although she has a new immune system and very grateful to have been given another chance at life, Amanda suffers greatly from Chronic GVHD. To this day Amanda is still in recovery from her transplant and probably will be for the rest of her life but she is a fighter.