The Old "Wait and See" Approach

Where to begin? The last week has been a little crazy to say the least. Lauren was set to start her new protocol last Thursday. We talked it over with her team (side effects, etc.), signed consents (yes, she signs it as well) and hung the chemo up for infusion when  oncologist #1 asks to see me in her office. After comparing the PET CT done in August to the chest CT she had last week, it appeared as though the tumor present in August had resolved itself and that they did indeed see an increase in a previous noted nodule (that didn't "light up" in the PET) in addition to a new nodule noted 4mm. Since we only did a chest CT with NO contrast, it was not definitive that this was active disease or not. As we sat there staring at each other, it was apparent that she too was at a crossroads as to whether we should proceed with treatment or not. I quickly made the decision to hold off and Lauren's nurse ran back to stop the infusion, I kid you not, which was about six inches away from going into Lauren's body.

The plan was to consult with the radiologist at Children's Oakland as soon as possible, looking at the actual films side by side instead of relying on a report. I got a call from oncologist #1 late Friday night. The nodule from August was indeed gone and the "old" nodule had grown from 4x6mm to 6x8mm and a new nodule, approximately 4mm had appeared. The increase in size of one (even though it hadn't lit up in the PET CT), the appearance of a new one and the fact that they did appear "nodular" in appearance, made them believe that this was in fact new disease. There is NO way to actually know for sure without a PET CT.

Taking in all of this information is really hard to do. Decisions concerning Lauren's care have never been easy. Putting poison in your child, knowing the long term side effects she will suffer from, is not ideal and that is why I advocate so hard for better less toxic treatments not to mention making huge life changing healthy nutritional choices.

So that brings me to a phone call I received today from oncologist #2. After he reviewed the film, again, with the radiologist at CHO, they decided that it is possible that the nodule we believed to have resolved itself may be hiding. Seriously? Thinking that Lauren was taking a deeper breath in one scan vs. the other, the nodule could have temporarily disappeared into tissue, appearing as though it was gone. All the "may have" & "could be" shit is killing me. I just want to scream! At this point, we discussed proceeding with treatment or waiting and well, I choose to wait. WE choose to WAIT and SEE.

What they (conventional oncologists) don't know is how Lauren is still alive. She is not a statistics and has defied all odds up until now. They didn't even think she would survive the initial clinical trial she was on from December 2009 to June 2010. In October 2010, when we decided to stop chemo and move forward with complimentary/alternative treatment, Lauren still had quite a bit of active disease left in her lungs. In eight short months the disease was gone. Who's to say that she can't do that again. I will never forget the look on the oncologist fellow's face when he came in with the results. It was above him to even think that what we had been doing for eight months could have caused such resolve. In fact, I had another oncologist come in and sit with us, asking what we had been doing and if we would like to speak to a group of oncologists at the hospital to try a not so conventional collaboration. And still, to this day, oncologist #2 continues to believe that the nodule couldn't have just "disappeared" because she "wasn't on any chemo since May".

For now, I have requested a PET CT to be done sometime in November. Nothing will change here at home. We will continue to eat healthy sustainable nutritional food and Lauren will continue with her morning smoothies and 80+ herbal supplements a day. I know its somewhat unconventional to not rush Lauren to poison, but what if? What if what we are doing her at home is helping her disease resolve itself? I know its hard to believe, but try, just for a moment...

On a lighter note, our awesome friends at Stupid Cancer posted a photo of Lauren on their Facebook page on Saturday asking if we could get 1,000 likes for being "one of the most amazing people out there". Today, just now, her photo has over 250,000 likes, 1,500+ comments and shared over 3,000 times! How amazing is that? If you have a chance, please like Stupid Cancer's page. Check out their website. They are the voice of the young people and they do a GREAT job! Love them!

Here's to clean scans in November!

peace and <3
-cherri

Here We Go!

I never thought in a million years that I would be happy to get the phone call that the chemotherapy we had chosen, Doxil, was finally approved through the pharmaceutical company. Janssen had placed Lauren on a "waiting list" over three weeks ago and given the date of October 9th for tentative approval status. We knew going into this that Doxil was in short supply. Why, I will never understand. I tried calling Janssen last week to find out why there was a shortage and why a pediatric patient didn't get priority, but alas, since I am not a doctor or doctor's office, they wouldn't speak to me.

I called the clinic today to check in and see if they had heard anything from the insurance company. I was a little peeved because the nurse said "I'll call and check on it" which, at 11am, she should have already done it. Anyway, a few hours later I got a call from one of Lauren's Oncologists to have a final discussion on his feelings about using this combo (it is outside the "standard of care" box so I completely understand his hesitation) and what side effects we are up against. I assured him that we all understand the leap of faith we are taking and I am still 100% sure that we need to be as aggressive as possible while we can.

Since it has been a little over two months since Lauren's last scan, I asked for another one to create a baseline. I am secretly hoping that the damn mini-tumor is gone. With as little radiation as possible (no contrast either), she will be getting a chest CT tomorrow at 10am. It will be quick and painless and we should have results same day or at the very least, Wednesday. As of now, she is set to start chemo on Thursday. It will be a one hour infusion every two weeks plus the oral chemo, to be taken at home every other day (with the caveat that if she tolerates it, we can increase it and if it's horrible, then we can decrease).

I started Lauren on her alternative protocol last week, boosting her immune system and filling her full of herbal supplements that will synergize well with the chemotherapy and also help to prevent the more common side effects - mucositis & hand/foot syndrome. She also started Trental, which will help protect her heart and also help to reduce the severity of the mucositis (I am hoping that she does not have a serious case because she just had braces put back on and mucositis (mouth sores) and braces won't make a good match). We already make really good nutritional choices, but have to "batten down the hatches" for treatment time. It's essential that she eats healthier than ever during this time.

So, here we go. Fourth line. I'm scared. We need this to work. They (doctors) really have nothing else of interest to suggest so this HAS to work. Please keep Lauren and our family in your thoughts and prayers as she starts the new chemo on Thursday. And to all my friends and family who supported my efforts in September, through Facebook, to raise awareness for Childhood Cancer, thank you so much.

I leave you with a promotional video that our family participated in for NNCCF. If you haven't already seen it (I posted it on FB yesterday), then get your tissues. It is amazing and profound; a story of four families affected by this horrible disease. And please consider sharing it. NNCCF has been a LIFESAVER to say the least for our family and the other CC families in Northern Nevada. We love them like family. <3




peace and <3 -cherri