Monday, June 29, 2009

So much sadness..........

This week has been really hard on the Brain Tumor world several children have passed away leaving a whole in those families forever. It is so sad that some families have to go through such trials. All I can think is that they must be so strong.......

This little girl has just gone home on hospice......They family is obviously heartbroken as am I. It just breaks my heart that yet another child will be leaving this earth because there is not enough funding to find cures for these cancers........We can all change that, post a link to this blog, go to these families websites, spread the word, and give, GIVE, GIVE....................

Our little angel Amanda Arianna Villalona was born on August 28, 2007 weighing in at 6lbs 12 ozs and 18 inches long. Since the blessed day that she arrived, she has filled everyone around her with endless love and happiness, especially Daddy, Mommy and her big sister Jaslyn Marie...
She tends to love attention (but what glamour girl doesn't?) and pretty much laughs with everyone that plays or talks to her. The best word to describe her is HAPPY and we could not ask her to be any more full of life than what she already is. Her courage and strength is what gives us the fuel to survive each day, not to mention the many blessings from our Heavenly Father above!
On 12/02/2007 we discovered a brain tumor that required immediate medical attention resulting in a surgery that took place on 12/04/2007. The posterior fossa tumor was 3.6 cm & was near the cerebellum - on the brain stem; 95% was resected and we were therefore thankful for a very successful surgery!
Thereafter, on 12/05/07, we were informed that the tumor was malignant. Words can not begin to express how our world tumbled upon us; and it was at the moment that we began to pray for the pathology report to come back with the most treatable tumor...
It was't until eight days later that the pathology report came in, diagnosing our little angel with AT/RT (Atypical Teratoid Rhabdoid Tumor); One, if not the most agressive, rarest & untretable cancers existing amongst infants today... Everything began to play in slow motion for us and digesting this news or better said the reality of it all just seemed impossible (and sometimes still does)!!!
January 4th 2008 thru September 2008 she was treated with "IRS III" protocol (aka the ATRT protocol from the Dana Farber Harvard Cancer Institute)...along with 30 sessions (6 weeks) of radiation-therapy at the University of FL Proton Therapy Institute that took place during February 2008.
We had no choice but to stop said protocol during the month of September as unfortunately our little princess relapsed 3 months before ending treatment. Our extraordinary NeuroSurgeon (Dr. Ian M. Heger) achieved total gross resection of the 1.7cm tumor that was located in the Sylvian Fissure area of the brain.
During the month of October 2008 we began her new chemotherapy protocol which consisted of "Irinotecan and Avastin," and we additionally began her 28 sessions of focal radiation which was completed by December. Said chemotherapy protocol was scheduled to end in October 2010, but unfortunately we received the devastating news yet again that our angel relapsed during the month of May 2009.

Due to the disease metastisising this time we have no medical options left to treat our princess. The two new tumors which are small in size are located in the upper left lobe of her brain and in her "T5" in the spine. Enhancement of the lympho-meningis show in her MRI through out most of the remainder of her brain and spine, to include her nerve roots and this is one major obstacle we can not overcome. Radiation of the spine is not an option for a child under the age of 3 yrs old (or the remainder of their life will be in a vegitative state), and where enhancements of cells show in the brain she's already received her maximum dose of radiation for life. Surgery can accomplish removing the tumors but there's no possible way to get to these microscopic cells; and chemotherapy will obviously not work by itself so we decided to not continue putting her through that.
As we are now home under Hospice care we still continue hoping for the miracle of tomorrow, for strength to accept our Heavenly Father's will, and for peace & comfort amongst all things. We will allow Him to carry us thru what awaits us knowing deep within our hearts our daughter will always live!!!
We want to thank each and everyone of you for your unconditional love & support and hope the Lord will repay all of you with triple the blessings and happiness!
With much love always!Carlos, Melissa , Jaslyn Marie -&- Amanda Arianna Villalona

You will need to create and account to visit her site but it is free and then you can follow most of these children. They need it. They need our support..

1 comment:

  1. I pray that God continues to give you guys strength. The little Princess is now in a better place.