Tuesday, June 7, 2011
June 7, 2011
These bracelets have been worn by each one of our family members at one time or another and we have even fundraised in their honor, but we never really grasped the importance of what this yellow bracelet stands for. Its importance and meaning have been vital to keep us going everyday especially these last couple of days.
Ever since Friday, we have been frantically researching and trying to learn everything we can about Kassidy's diagnosis. Monday morning I set out to start calling cancer centers that we had found online that had some experience in pediatric brain tumor cancer and most of all experienced with brain & spine ganglioglioma. The more we searched, we found the rarity of this disease. So rare, that I have only found 4 parents of children/adolescents in the United Stated with exactly the same diagnosis.
My first call was to MD Anderson in Houston, TX which when I called I had to hold because Dr. Soumen Khatua wanted to speak with me directly. He asked for all of Kassidy's medical records, MRI scans, and even wants the biopsy slides so he can make his own diagnosis and call us back with his opinion since we are not around the corner. I then was able to speak with Tabitha at St Judes Hospital, she suggested that I should look close to home since St Judes treatment for brain & spine ganglioglioma was radiation and they have only treated 5 cases.
Because of St Judes suggestion I then proceeded to call UCSF Pediatric Oncology Department in San Francisco and UCLA Pediatric Oncology Department as well and had to leave a message for Stanford's program. Both of UCSF and UCLA are interested in looking at Kassidy's case, but were not able to tell me how many patients they have treated. Today, I sent off all the requested records by Federal Express hoping for maybe new answers or alternate treatment programs.
We also met today with our pediatric neuro oncologist to discuss the results he had found from the pathology test that he received, from Dr. Perry, a world renown pathologist that has worked at John Hopkins and is now at UCSF. Her neuro oncologist mentioned today that Kassidy's tumor is a grade I, but it is diffused infiltrated in the brain stem; which is not so good. He wants Kass to wait 4 to 6 weeks to completely heal from her surgery and proceed to start radiation therapy here in Vegas and that he would refer us to the radio oncologist. At that time, we told him that we would like to seek a second opinion; which he supported since we have time before Kass can start treatment anyways.
Ryan and I received some visitors while Kass was at the hospital; parents of another Centennial athlete, a baseball player who had a brain tumor 3 years ago and is doing well now, but not the same diagnosis. Their son was put on a very regimented diet made up of mostly organic foods. The boy experienced very few side effects from his treatments and recovered well from them. I truly believe the right type of food fuels and heals you. We will be taking Kass to see that doctor in the next week to get her body ready for whatever treatment is coming her way.
I know many of you have been trying to get ahold of us, but it's been a crazy week with getting ready for Kyle's graduation party, calls to hospital/doctors and just research. Thank you for all your support and understanding.