It is our sincere hope and prayer that this update finds you and yours in the loving embrace of God! We thank all of you for sharing in our many blessings, celebrations, miracles, sadness and struggles. Without a doubt, we are a better family. We have blossomed from this journey, many new friends and relationships have formed, our purpose in life is now clear, and our need to be close to GOD and our faith is deep. If it wasn’t for the Lord, this journey would have been and would be unbearable. We needed and need the grace, the amazing grace that the Lord provides. We can feel it - in the peace within and in the hugs we get from everyone who visits. We can see it - the mailbox has something wonderful in it every day. We can hear it - every time the phone rings. We can touch it - in all the gifts we’ve received. We can smell it - in all the beautiful flowers and plants that have been sent to our home. God has given us all these senses and He uses all of them to reach out to us. All we need to do is pay attention. Today, and everyday, take a moment, and use all of your senses to be amazed at how much you are loved by God and Jesus Christ His son. Thank you for not only joining us on this journey, but for providing the life vests. May the good Lord continue to bless you and keep you. Peace be with all of you.

Now, we would like to update all of you on the last three weeks of our lives. Starting back to Oct 22, life for Faith was becoming a struggle. However, for us, she fought to the very end. It all started with the inability to eat and swallow, then it went to her good eye(left) starting to deviate, then the inability to keep her head upright, and in her final week, she didn’t have much of an appetite, and she wasn’t able to sleep. (night or day) The only faculty she did not loose was her ability to go the bathroom. (that stayed in tact, even until the day she passed) We saw all the physical signs of deterioration, but couldn’t come to believe that she was near the end.

· Faith continued with physical therapy, up until Thursday, Oct 30^th. She rode her bike that day and celebrated Halloween with her HS Musical cheerleading costume. She also continued with tutoring up until Wednesday, Oct 29^th. Friday, Oct 31^st, she woke up and ate a big bowl of cinnamon oatmeal, a 6oz cup of blended fruit juice and off we went to Elijah’s school Halloween party. We went food shopping afterwards, and approx. 1:00 we sat down at home to eat pureed beefaroni. (which she loved to eat the last month) After eating 4 or 5 spoonfuls, she started choking. We acted quickly and Faith was able to cough the food up. After the incident, her breathing became labored. We automatically rushed her to Joe DiMaggio’s Children’s emergency room for examination, and there they commenced oxygen breathing treatments, nebulizer treatments and then a chest x-ray. The x-ray showed no aspiration in the lungs and no fluid in the lungs. However, they did advise us, that sometimes it can take up to 8 hours for it to show in the lungs. So, she got in for overnight monitoring. The doctors advised no more oral feedings and Saturday, Nov 1^st they could put a nasal feeding tube...if we wanted. Even at that point, we still didn’t face or see death. We thought, great we would put the feeding tube in, and we would get discharged that same day or the next day. We were hoping to have that carry us over another few months or so. (buy time for a new treatment plan to be approved) WRONG!!! We spent Friday night in the hospital. The night went well. Her blood pressure was fine the entire night and following day. She didn’t need oxygen to sleep nor did she need it on Sat. morning. We thought what a great sign. So, we started to inquire with the Dr’s when can they put the feeding tube in because we knew she was starting to get hungry. So, approx. 11:00/11:30am they came in to do another chest x-ray. She then got wheeled down to insert the nasal tube. That was the straw that broke the camels back. She became distressed, her breathing extremely labored, and her blood pressure sky rocketed. All the nurses, the doctors, the respitory therapist, even the i.c.u. doctor came in to work on her. It was the scariest minutes of our entire lives. They did a great job getting her stable. However, the entire time she was trying to pull the oxygen mask off and pull out the nasal tube. We started reading the First Bible book to her. Her vitals were stabalized while we were reading. The nurses kept telling us to read the Bible stories over and over to her. So, we did. After approximately 1 hour of doing this, we decided we weren’t accomplishing anything by trying to prolong her life. If we continued what we were doing, it was for our own good. Not Faith’s. The bottom line, there is NO CURE, this day and age, for this type of tumor. So, we decided to remove the oxygen mask, feeding tube, and the ET red light monitor around her toe. Prior to doing that, while we were reading to her, we kept telling her to run as fast as she can, to Jesus Christ and any angels that were coming for her. We reassured her that she would be well protected and that we would all be fine here on earth, just knowing that she would finally be happy, laughing, jumping, dancing, eating, tumbling, flying, etc. It was bad enough to see her not walking, talking, laughing, loss of hearing in one ear, facial paralysis on right side of face, one eye deviated, the other turning also, and mainly not being able to eat or swallow food and liquids. Even though she is a kid, she deserved to die with dignity. We also promised Faith that her dying would not be in vain. So, approximately 4:00pm everything was removed and out of her right eye came two tears of blood. The nurses and our family witnessed it with our own fingers and sight. At that very moment, we didn’t know how and why this happened. After talking to several priests and pastors they reassured us that she was a saint, sent to us to save souls. Those two tears were the blood of Jesus Christ. The Bible states Jesus cried tears of blood when HE was crucified and had the crown of thorns in HIS head. Again, we know GOD was holding her in the palm of HIS hands. We witnessed her spirit rise the moment we removed the oxygen. She closed her eyes and went into a deep, heavy breathing sleep. All that remained on the hospital bed was her shell. In short, absent a miracle, Faith had no chance. God wanted her.

Since, she fought so hard for us; we would do the same in her honor. We will continue her fight, we will make sure her light remains in all of us, and WE WILL SEE TO IT THAT THE MEDICAL WORLD FINDS A CURE in our lifetime. HOW SO? When we removed the oxygen from her little face, we knew we had a few hours before her heart would stop. We immediately notified the hospital staff of our wishes to save another child in the future. We all know, because of the location of this tumor, (intrinsic in the ponds, on the stem of the brain) there is no tissue to biopsy or research. So, we requested an autopsy of the entire central nervous system. We had the entire brain and tumor tissue removed, the spinal cord, corneal fluid (since it connects to the brain stem) and as an extra to someone who can’t see, the corneas removed and donated to the University of Miami. All the other organs couldn’t be donated because of the cancer diagnosis. We had Faith’s neuro-oncologist, Dr. Sharon Gardner get all the right doctors at NYU to talk to all the right doctors here in Florida. Dr. Zagzag, the neuro pathologist at NYU relayed all the specific requirements to the pathologist here in FL on what exactly needed to be done, and how exactly to preserve everything prior to sending out to NYU'S lab/tumor bank. NYU informed us that Faith’s brain and tumor tissue was only the second gift donated in the last five years. On Monday, Nov 10th we received confirmation that the NYU laboratory received everything. The pathology report should be in within 6 weeks. On Friday, November 7^th, coming home from the cemetery, pulling up to our home, we received a phone call from Univ. of Miami, informing us that Faith’s corneas were good and already placed successfully to a 22 year old female in Boca Raton, and a 30 year old male in Merritt Island, FL. Though we didn’t get the miracle we so desperately prayed for here on earth, she gave the miracle of sight to 2 individuals. GOD is an awesome GOD!!!

What are we going to do now? FIGHT, FIGHT, FIGHT. Faith’s fight is over, ours has just begun. We’ll be praying and seeking the Lord for guidance as we march forward. We’ll be working with the following organizations to help raise awareness and help raise funding for a premier, world renowned research laboratory at NYU:

www.mikeyczech.org and www.makingheadway.org

We will be sharing our testimony to anyone willing to listen. We are here for any of you who would like to talk or ask any questions.

May GOD now help the rest of us cope with her loss!!!

Dear Family and Friends,
Thank you all for you unending prayers and support. In lieu of flowers please send charitable donations to:

Faith Griffin Trust

16121 Opal Creek Drive Weston, FL 33331

Our mission to find a cure has just begun!