On April 19th, 2010, after what seemed to be a stomach virus and two visits to the ER
at Joe DiMaggio's Memorial West, a CT scan revealed a large mass in our daughter's brain.
The MRI later revealed the mass, the size of a soft ball was causing pressure on brain.
Mandy was quickly transported to Joe DiMaggio Children's hospital in Hollywood. Quick thinking from family and the twins Pediatrician and Neurologist, she was soon transported to Miami Children's Hospital (MCH). In less than 12 hours, Dr. John Ragheb, Director of Pediatric Neurosurgery for University of Miami and MCH took her and prepped for surgery.
Immediately following surgery, a port was placed. About 10 days later we received the final pathology report diagnosing Amanda with a very rare brain tumor: Embroyanal Tumor with Abundant Neuropil & True Rosettes (ETANTR). There are about 40 cases worldwide, but according to the doctors it must be in the hundreds due to misdiagnosis. As it stands the World Health Organization (WHO) has not recognized this as a separate entity, so there is not a registry or a protocol for children with ETANTR.
The oldest case is of a soon to be seven year old girl, Zoe from Texas, which we are happy to report is cancer free.
Two months into her treatment we temporarily moved to Jacksonville, where she received focalized radiation at the University of Florida Proton Institute.
Fast Forward to Fall 2011 . . .
Since Amanda's first tumor resection in 2010, she continued on the AT/RT protocol and reached successfully week 37 of her treatment cycle. She has received the most aggressive form of chemotherapy available for children and took them in with out a problem.
While living in the real south and largest city in the country, we enjoyed making friends with some amazing people --The Parrs, the Dizney and the Marinucci families. During this time, she continued to receive several chemo cycles and proceeded to have minor surgery (2nd) to place her markers for the radiation therapy.
Mandy continued her treatment till early 2011, when an MRI revealed a tumor outside the resection/radiation area. So we proceeded with immediate surgery - at this point, this would be her third surgery, but her second tumor resection. We sent her tumor to a private lab at Memorial Sloan Kettering Cancer Center in New York. Her tumor tested positive for a specific protein, she would be eligible for Phase II trial. A few weeks later, we received the news that her tumor tested positive for two proteins.
Winter in New York 2011 . . .
Soon after Mandy underwent what would now be her fourth surgery. The idea was to pace an Omaya reservoir / port in her brain. This makes the spinal taps easier to extract without going in through her spine and ultimately how she would be receiving the trial therapy. We later bought one-way tickets to the City that Never Sleeps. First day was the most stressful and the first treatment as well. She soon did her entire cycle (five weeks) and we were psyched to have completed the Phase II. Mandy was feeling great, eating well and enjoying being around her cousins in New Jersey.
We returned home for about two weeks, attended our dear cousin's wedding -- the Ramos, and returned to New York for more scans and Phase I of the next trial.
So here is where our hearts skipped a beat once again, when we hear the Doctor saying that they found a couple of lesions so we could not proceed to the Phase I trial. We rushed home back to Miami and the consensus was to receive proton radiation. The recurrences are superficial and it would best to do focalized therapy.
Needless to say, we met with her doctors just four days later and asked about full brain radiation. I have to tell you that most radiologists have an idea but cannot confirm what will be the side the effects long term. The truth of the matter is that they do not know how to treat Mandy's cancer and we were ready to be more aggressive with treatment. So we asked can you guarantee if we do localized radiation that this monster will not pop on the other side, well you know the answer.
With all the prayer warriors working over time and praying for discernment we made the difficult decision to do full brain radiation. The next ten days were extremely difficult as Mandy was doing all these sessions without sedation. Mandy seized one day due to her seizure medication being filled incorrectly. I will spare you the details but I for one do not even want to think about those two weeks.
Back In Miami - Summer of 2011 . . .
So happy to be surrounded by friends and family and back in our home we now were scheduled for chemo again every two weeks. An MRI followed shortly after and revealed her cancer was shrinking. A month later and her cancer was not even evident. A cause for celebration, we planned the twin's birthday party in less than two days.
We were so overwhelmed by all the love from family and friends. As tired as we were the day after, it brought us to our knees at church. So grateful for the blessings bestowed upon our family.
"Every day we spend together as a family is a blessing. We thank Almighty GOD for healing our little girl through Jesus Christ our Lord and Savior. We thank our blessed Mother Mary for her intercession, prayers and for bringing our family within sight of the Creator sovereign power of the universe so that HE will show us mercy and grace through this trial. GOD is faithful and has done what HE promised. We thank our families, friends and all the pediatric cancer families we've met on this journey . . . God bless you always and forever!"