I’m Jennifer’s auntie and Elizabeth asked me to get this site up and running.
First of all, Tony and Libby want to express their heartfelt and deep gratitude for all of the love, prayers and well wishes that have been pouring into them from everywhere. They are overwhelmed with gratitude and amazement at all of you!
However, they are currently unable to receive visitors or calls at this time. That will change but for right now, they just need to process everything that they have heard. If you need something or have some information that you think that they could use, feel free to contact me, Ann Scharrenberg Calcagno, my mother, Mary Goggin Scharrenberg or Renee Ridgeway via facebook as we are all on there.
So today JLK, Charlotte and their parents met with the Tumor Board at Lucille Packard Hospital, where they were told that Jennifer has a brain tumor that is attached to her brain stem. The name of the type of tumor is Diffuse Intrinsic Pontine Glioma. Unfortunately, there is no surgical option for this type of tumor and there is currently no cure. Jennifer will be receiving radiation therapy daily at Packard for 6 weeks starting, most likely, next week sometime.It will be an outpatient therapy. Since JLK is so young and you need to lie completely still during radiation, she will be under sedation every time that she receives the therapy. Additionally she will be taking a very yucky tasting (pray for us that we can cover the taste) oral steroid during this time to help shrink the tumor. These two in combination should temporarily greatly reduce Jennifer’s most troubling symptoms, which are headaches and trouble with her vision. However, the steroid might make her appear bloated, so be aware that you might notice that in photographs. During the course of radiation, her wonderful team of doctors will be investigating all clinical trials that are happening in the United States to see if we can locate one that is appropriate for JLK. And as my friend mentioned to me, don’t discount the God factor! Please feel free to consult “Dr. Google” at your own risk but Tony and Libby DO NOT want any research that you find to be passed on to them. They feel very safe and secure with the information that they have gotten from the real doctors at Lucille Packard.
Tonight, we as a family, got together to celebrate Jennifer’s 6th birthday. It was wonderful and most importantly Jennifer, Jonathan and Nicholas had a great time with their cousins! We played games, did a pinata, pin the crown on the princess and…shaved the oldest cousin’s head BALD! JLK loved it all! The night could not have come together through without the help of all of Fibby’s sister-in-law’s and a special Fairy and magical photographer. The whole party was gluten free, even down to the candy, which tickled Jennifer pink.
At this time, Tony and Fibby would also like to express to their special guardian Angel, Heidi Scharrenberg,their undying ,deep and profound gratitude and love for her guidance, calm and knowledge. I am not going to proofread this, so please forgive any misspellings, typos, etc. Good night, God Bless and PRAY.