You WILL NOT Take Our Hope Away!

I've sat staring at this screen for quite some time trying to muster up the courage to write this blog post. If I just keep it all inside and not make it public, will it go away?

It's been a little over two weeks since we found out that Lauren has relapsed for the third time. Devastated is an understatement. It seems with each course of treatment the "stable time" gets shorter, which scares me more than ever. Her cancer is becoming more resistant than ever and now is the time to NOT lose HOPE.

Thanks to Leslie over at NNCCF, I made contact with Dr. Douglas Hawkins at Seattle Children's hospital to get his opinion on treatment options. Dr. Hawkins is the Associate Division Chief for Hematology/Oncology at the hospital, Professor of Pediatrics at UW School of Medicine, Associate Director of the Center for Clinical and Translational Research and most importantly, a sarcoma expert. He also is the chair of the COG (Children's Oncology Group) Soft Tissue Sarcoma Committee. I asked CHO to send over all pertinent information on Lauren's case to him and I made the phone calls/did the running around to get all imaging (CDs) sent to him as well. I spoke briefly with him last Monday and we did discuss his suggestion on treatment. He hadn't yet had a chance to speak to the Oncs at CHO, so if anything changed after a consult with them, he would get back in contact with me.

We met with Lauren's Oncologist from CHO the following Thursday (a week ago today) to discuss Dr. Hawkins suggestion and to go over a couple of other ones that he had researched and thought we might be interested in. I won't go into major details about the meeting aside from saying that I walked away more pissed off than I have ever been before. Twice during the conversation he said "we are not working towards a cure". ARE YOU SERIOUS? First of all, this is not something you say IN FRONT of the patient and second, you may have lost all hope but we HAVE NOT! I was hoping that Lauren didn't pick up on his statement, but being the sharp girl she is, she did. I have honestly lost a lot of respect for this team as of late and I am between a rock and a hard place right now.

So, below are the options that the medical oncologists have suggested, in order of their importance.
1) Vincristine/Irinotecan/Temozolamine
-- Vincristine is KNOWN to cause severe neuropathy. I'm not sure Lauren would recover from another drug that causes neuropathy.
2) Vinorelbine/Cytoxan
-- Again, Vinorelbine is KNOWN to cause neurotoxicity/neuropathy.
3) Pazopanib (Votrient)
-- Many of our adult sarcoma friends have been on this since it's FDA approval in April. This is the protocol drug that Dr. Hawkins suggested.

The more I researched these drugs and the more I talked with our Naturopath, the more I realized these protocols are primarily a form of palliative care. They aren't known, at least on paper, for curing, but more like stabilizing and, for lack of a better phrase, buying time. I was trying hard to sit with this and be ok, but really, who the hell would be? Then I got an email from our ND and again, my HOPE was ignited. He and a medical oncologist colleague of his have come up with a #4 option and while it is still chemotherapy, they believe THIS protocol has a very good chance of curing Lauren. My HOPE has been restored!

4) RFA (Radio Frequency Ablation) followed by Doxil/Etoposide followed by intense immunotherapy
The RFA would blast the tiny tumor located in the pleura but theoretically leave microscopic disease floating around, which is the reason we follow up the procedure with chemotherapy to kill any remaining disease. Lauren has had Doxorubicin (and Etoposide) in the past and Doxil is in the same family so she will be getting a smaller dosage to make sure her heart is protected, as the Anthracycline family of drugs is known to cause heart problems. Our ND will prescribe a drug called Trental as a prophylactic that will also help with mucositis that the Doxil will most likely cause as well.

The problem we will most likely run into is presenting this "out of the standard of care box" protocol to the team here, as they would be the ones to request authorization and they will be the ones to administer the chemotherapy and find a suitable facility to do the RFA. The two teams have thus far cooperated and meshed quite well with each other and I am hoping they continue to do so, for Lauren's benefit. I do not want to change Lauren's provider, but I will if I cannot get them to approve and agree that this is her BEST chance of surviving this terrible monster. Our ND will be communicating with the oncology team in the next few days and if need be, I will also be discussing our decision with them to make sure they know this is what we want to do.

For the last week Lauren and I have had many discussions on life, treatment options, her journey. I've cried. She's cried. We are all very scared of the uncertainty of the future. We have always maintained that the decision to treat or not treat her cancer was hers and only hers. What a HUGE burden to bear for a 15 year old girl. Last week, I told her, if she wants me to make the decision, I would. But my brave girl said "No Mom, I can do this. I just need to think." As this is the 4th line of treatment, Lauren is no stranger to the side effects of the chemotherapy. She knows what she is in for. She knows how it makes her feel and its not like time has healed her wounds. It is all very fresh in her memories. But she still has fight left in her and with my renewed HOPE, I encouraged her to continue to fight. The ND also said that he will be the first to tell us when its time for Lauren to "wave the white flag" and surrender her body to God but he does not believe that time is now. With every fiber of my being, I told Lauren to fight like hell! This is a battle and I know its hard and I know it makes you feel like crap when in treatment, but giving up is not an option right now. NO ONE is going to ever take our HOPE away from us ever again.

With renewed HOPE and STRENGTH!
peace and <3
-cherri

We lost an unbelievable friend yesterday to Ewings Sarcoma. Karen, thank you for being such a great friend and true inspiration to both Lauren and I. No more drugs, no more cancer. You are finally free. Fly with the angels sweet girl.