Shortly after my last update we were presented with a #5 to our plethora of treatment options. The latest would be a clinical trial just opening up at Children's Hospital in Oakland for resistant metastatic sarcomas. I was told the Ewings arm was already full and that IF this was something we were interested in we needed to jump on board quickly. Um, ya, force me into making a decision based on FEAR...NOT! While it looked promising, we were still leaning towards the Doxil/Etoposide combo because we still need to be as aggressive as possible. The aforementioned clinical trial would also have to take place weekly in Oakland (an hour infusion, once a week), another reason why we decided to place it second on our list of options.
Last Sunday night (a week ago) I composed an email (the hardest I have ever written) to all of Lauren's team (Medical Oncologists and Naturopath) explaining the reasons why we chose to use the Doxil/Etoposide combo. Luckily prior to MY email, both her Oncologist and ND had a few email exchanges on the subject so I am sure it wasn't that much of a surprise and I am so happy that they are all willing to work together. Integrative medicine at its best I'm telling you!
Unfortunately, there is a nationwide shortage of Doxil right now and the clinic, anticipating this shortage, has been in contact with a company in India who also makes it just in case we aren't able to get it here. And let me tell you, I almost want to get it from India and say EFFFFF YOU! to the pharmaceutical companies here. So we are in limbo right now, waiting to find out if/when we will be able to start her on this new protocol. Measures have been taken to protect Lauren's heart (which, BTW, her echocardiogram was good; nothing concerning showed up =)) and herbal products have been started to prepare her for chemo and to hopefully fend off any serious side effects. Now, we just wait ....
In the mean time, Lauren and I made plans to attend the west coast meeting of "Evidence Based Complimentary and Alternative Cancer Therapies Conference" presented by Annie Appleseed Project (we met the Founder of AAP at Stupid Cancer OMG2012) in San Francisco. I can't even tell you how excited both of us have been. The first day was amazingly profound. Unfortunately, Lauren and I became sick halfway through the first day and ended up packing up and driving home early Saturday morning (the longest drive of my life) with fever and congestion. We are still nursing ourselves back to health and are feeling better with each day. I was really looking forward to the second day of the conference and hope that they have some notes and possibly video of the speakers we missed. I still remain confident that Lauren is so healthy because of the changes we have made to our nutrition and because she is being treated holistically even in the face of chemo treatments and conventional medicine.
Below are a few pics I took on our trip down and at St. Mary's Cathedral where the conference took place.
I just realized too that my last update was in August. If you didn't know, September is NATIONAL Childhood Cancer Awareness Month. Each day on Facebook I have paid tribute to survivors that I have known personally (either through face to face or social media). Some are still with us and some have left this Earth to become our Guardian Angels. If you are one of my friends on Facebook, please share these tributes and encourage your friends to share as well. Advocating is the only way we are going to bring awareness to this horrible disease that keeps killing our children. Below is the FB banner I made to honor Lauren and CCAM. Please feel free to use it and share it.
I leave you with a more personal note than I am used to sharing. A lot of people, not knowing what to say when talking to me about Lauren, will say things like "God has a plan" and "Everything happens for a reason". Let me just say that if God's plan is to make our children suffer, then I may be forced to rethink my religious beliefs. If there is ANY reason why our kids should be put through this and not allowed to live a normal life, then please enlighten me. Please think about the things you say before you say them. I know those are common phrases to say to someone grieving (not only for a lost loved one, but for someone going through a life threatening ordeal). I assure you, I have been grieving since December 3, 2009. If it was your child, would you want to hear either of those phrases above? I know that dealing with cancer takes a lot of courage and just being my friend takes a lot of courage, so be courageous and say the things that AREN'T normal. You WILL NOT offend me and I want to make sure that you know my intent is not to offend anyone, but to educate them gently to the things a Momcologist does NOT want to hear. And yes, you think I am strong but I am only this way because I have no other choice. The smile you see across my face is a facade 90% of the time. It's easier for me to smile than to admit I am hurting. I am not flawless. A hug goes a long way. And really, I mean REALLY ... all you need is LOVE!
peace and <3
-cherri
