Lauren had her follow-up PET CT on Friday, November 9th. The following Monday we met with Oncologist #2 at the clinic to go over the report. I normally don't mind when they guess and are right, but this time, I didn't want him to be right. The lesion that presented in August, then disappeared in October (thought to be hiding in a shadow of a chest CT w/o contrast) was indeed hiding and it was back with a vengeance. It was no longer 6x8mm but had grown to 15x25mm and had an SUV of 12.6. There are two smaller ones as well, one too small to resolve on the PET CT and the other, which was present in the last scan, increased from 6x8mm to 10mm with a low SUV of 3 (< 3 is normal). This was obviously devastating news for our family. We had such high hopes that the new disease was really gone and not hiding. How condescending can cancer really be? HAHA! Well, the joke is not on us cancer, it's on YOU!
As we took a week to reflect and sit with all the new information, it seemed a lost cause to get Lauren to commit to doing more chemo. This isn't her first walk in the park and unlike childbirth, cancer patients do not soon forget the torment and pain associated with chemotherapy. The month she had off between the two scans brought HOPE of the possibility that the mysterious tumor was in fact gone. We had seen this happen before in May 2011, while she was off of conventional treatment. All lung disease had resolved, without the use of chemotherapy.
Friday afternoon we took my son to pickup his tuxedo rental for a dance he was attending on Saturday. Soon after, Lauren would tweet "Ever think about what it's like to die young? Not getting to go to prom or get married and have kids.
Through out Lauren's journey, I have tried to always make it a point to let her feel as in control as possible. The decisions were always hers to make, but I made sure they were well informed decisions. This new protocol may be it for her. Everything else currently used as standard of care will only buy her time. The rarity of Lauren's cancer is reality. We've exhausted all that the conventional teams have presented. Everything else is palliative care.
Soooo, next Tuesday will be day 1 of Lauren's new protocol. She will get a one hour infusion of Liposomal Doxil (no longer in short supply) every two or three weeks. She will also be taking a daily oral dose of Etoposide with a one week break every two or three weeks. This combination is not standard of care, and in a way, Lauren is running her own mini clinical trial where she is the only patient. She is giving it her all this time, including herbal supplements to synergize with the conventional protocol along with alleviating most if not all of the side effects (including, but not limited, cardiac protection against the Doxil). Once we get rid of those nasty tumors hanging out in her lungs, she'll start a high dose immunotherapy that will last 2-3 years. If at any point during the immunotherapy she relapses, all bets are off.
I wish each and everyone a wonderful Thanksgiving holiday with your friends and family. Don't forget to tell the people you love how much you care. I leave you with a few pics of Lauren taken recently.
The first pic is of Lauren standing up outside of the sunroof while Jim was driving around the neighborhood. The biggest smile I have ever seen =)
The second pic she is wearing her new wig (which I LOVE because of its red tones). It looks like it could be her natural color.
Above is a skin for the iPhone that I designed. If you are interested in getting one for yourself, I can send you the image file and show you where to order it from. No, I am not trying to make any money, just trying to promote awareness.
peace and <3
-cherri
I would also like to ask for prayers and positive energy sent over to Oakland, CA to Ariel Gariano, her mom Crystal and the entire Gariano family. Ariel has been battling the rhabdomyosarcoma beast for five years now and has relapsed once again with new disease. You can find updates on her Facebook page or Caringbridge. Much love to this family <3 as my heart breaks for what is to come.
