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.
Thursday, August 30, 2012
Sunday, August 12, 2012
The Climb
I am sure most of you have heard Miley Cyrus' song The Climb (it's older, so I am guessing most have =)). When I hear this song, all I can think about is Lauren and her journey the last two and a half years. In the cancerverse, unless you have been stable (with NED) for five or more years, you are not considered "in remission". It almost feels unattainable to reach this milestone. Five years in the cancerverse is a LONG time. Lauren has been on three different protocols (six different chemotherapy drugs (they are always given in pairs)) with the last causing so much damage (peripheral neuropathy - also commonly called foot drop) she could not walk unassisted for months not to mention chemo brain and I am sure there will be other complications in years to come. She endured 36 radiation treatments to her pelvis causing severe burns, premature menopause and stopping the growth of her uterus making it impossible to physically bear children of her own as well as other female complications that she would be mortified that I share with everyone. She missed a year and a half of middle school and a semester of high school. She lost many friends who were unable to relate to someone who has cancer (some sooner, some later), many stares (I've taken to staring back and making faces when people do this now) and sad sympathetic gestures when she goes out in public, sans hair.
Needless to say, her journey has not been easy and the climb has been the most difficult to date. Her rehabilitation could take months, if not years. I am sure that she dreams of the day when she can run again and be able to play soccer or even simply walk without a walker or a cane. I know I do. I am sure she dreams of having a normal teenage relationship with a boy. I know I do. If you ask her, she will tell you that she is not sorry that she got cancer. She will tell you that it has changed her life, but mostly for the better. And that goes for our whole family. We cherish each moment, living for the day and not for the future, for we were never promised tomorrow. We are thankful for each day we have here and we try to make the best of it, no matter what.
The following pictures are from a short hike that Lauren and I took a couple of weeks ago. It's a small hill behind the apartments that we lived when we first moved to Reno where her and Tyler would go on frequent walks, before her relapse; before the chemo damaged her ability to walk. The first incline up she used her walker, but being a dirt path made it harder so she ditched the walker and held my arm the rest of the way. I was so proud of her for not quitting (a word that is NOT in her vocabulary). She is my inspiration, as I am sure she is to many of you.
We participated (more like visited) the Douglas, NV ACS Relay For Life last weekend with our friends The Reyes family (who lost their son Cris a few months ago). Lauren and I walked the survivor walk in memory of Oliver, Neto, Cris and Clayton -- our dear friends who we lost over the last year and in honor of Lauren and our friend Ariel who are still fighting hard for the right to live. Lauren was honored at the survivor dinner as being the youngest one at the event and received a gift basket. At the beginning of the survivor walk they asked people to raise their hands when asked "are you a 5 year survivor, 10 year, and so on". There was a woman there who is a 47 year survivor! Amazing. Lauren teared up once we sat down and when I asked her what was wrong, she said, "I am only a two month survivor". I could see the fear and uncertainty in her eyes and I just hugged and said, "Don't worry baby, you will get there!". Some may say that I am preaching false hope, but regardless, I don't ever want her to think that there is NO chance because then, you start to lose that fight and once you lose that fight in you, there is nothing left holding on to keep you alive.
One last thing, September is childhood cancer awareness month and I intend to advocate like a crazy momcologist! It's time to make people aware that kids get cancer too and the lack of funding is sickening.
peace & <3
-cherri
Needless to say, her journey has not been easy and the climb has been the most difficult to date. Her rehabilitation could take months, if not years. I am sure that she dreams of the day when she can run again and be able to play soccer or even simply walk without a walker or a cane. I know I do. I am sure she dreams of having a normal teenage relationship with a boy. I know I do. If you ask her, she will tell you that she is not sorry that she got cancer. She will tell you that it has changed her life, but mostly for the better. And that goes for our whole family. We cherish each moment, living for the day and not for the future, for we were never promised tomorrow. We are thankful for each day we have here and we try to make the best of it, no matter what.
The following pictures are from a short hike that Lauren and I took a couple of weeks ago. It's a small hill behind the apartments that we lived when we first moved to Reno where her and Tyler would go on frequent walks, before her relapse; before the chemo damaged her ability to walk. The first incline up she used her walker, but being a dirt path made it harder so she ditched the walker and held my arm the rest of the way. I was so proud of her for not quitting (a word that is NOT in her vocabulary). She is my inspiration, as I am sure she is to many of you.
We participated (more like visited) the Douglas, NV ACS Relay For Life last weekend with our friends The Reyes family (who lost their son Cris a few months ago). Lauren and I walked the survivor walk in memory of Oliver, Neto, Cris and Clayton -- our dear friends who we lost over the last year and in honor of Lauren and our friend Ariel who are still fighting hard for the right to live. Lauren was honored at the survivor dinner as being the youngest one at the event and received a gift basket. At the beginning of the survivor walk they asked people to raise their hands when asked "are you a 5 year survivor, 10 year, and so on". There was a woman there who is a 47 year survivor! Amazing. Lauren teared up once we sat down and when I asked her what was wrong, she said, "I am only a two month survivor". I could see the fear and uncertainty in her eyes and I just hugged and said, "Don't worry baby, you will get there!". Some may say that I am preaching false hope, but regardless, I don't ever want her to think that there is NO chance because then, you start to lose that fight and once you lose that fight in you, there is nothing left holding on to keep you alive.
Recently we were asked to be one of four families participating in a promotional video for NNCCF. The concept is similar to the videos now viral on sites like YouTube where there is no talking, but only words written on cards. The video will be simply prolific and I am sure you will all love it! We had an awesome time and I will be sure to post a link once it is complete. Here is a still shot from one of the cards (we wrote what was written on all the cards).
Lauren has her follow up PET CT scheduled for tomorrow. Originally I was told that BC/BS denied the scan because they said it was too soon after the last one (two months). As I mentioned in my last blog post, I've been "stewing" the last few weeks, worried that the disease is no longer stable. I've been so scared lately. I just want this to be OVER! Anyhow, once we receive the results and take time to regroup on the results, regardless of good or bad, I'll post about her next treatment plan in depth. There will be no more chemo.
I've asked a few times about prayers for Ariel, an almost 14 year old from the bay area battling 3rd relapse rhabdomyosarcoma. I asked again last week, through Facebook and Twitter, as Ariel had a really tough week and was in desperate need of some urgent prayers and positive energy. I am still asking for you to add Ariel and her entire family to your prayers each day. She needs to be home and well for her 14th birthday with her twin sister this weekend. Let's get this done!
peace & <3
-cherri
Sunday, August 5, 2012
Into the Dark I Go
It was really tough for me the first time around to settle in to Lauren's life sans conventional therapy. I knew what we had decided was a huge step and that we were doing everything in our power to treat Lauren's cancer naturally, the way God intended. Yet, somewhere in the back of my mind I kept thinking "Are we letting the cancer grow?". I kept second guessing the decisions we had made as a family and naturally it scared the sh*t out of me. I've kinda been feeling the same as of late. I tend to call it my "dark side". While most of the time when you see me, I will have a smile on my face and never let on that anything is bothering me, but know that inside I am aching and angry and constantly doubting my decisions where her treatment is concerned. Yes, I know that half of winning this battle is to believe. But, BELIEVE ME, others have believed and still did not win. What makes my baby so special? And without any of you taking this the wrong way, "God has a plan" and "Things happen for a reason" are not what a momcologist wants to hear. And last but certainly not least, Lauren still hasn't gotten to the two year mark, much less the five year. In this cancerverse you see, NO ONE speaks of the two words/phrases every survivor wants to hear until those milestones -- No Evidence Of Disease and Remission. All we get at this point is stable. Stable means that there is NO progression. Yes, that is good news but really, in the eyes of a 15 year old that knows she very well may not make it to 20, its not the words she wants to hear and frankly neither do I. I know we are dealing with the monster of all monsters. Lauren doesn't have breast cancer or leukemia. We were told in the beginning that a cure is most likely not possible. But I refuse to think that is true. I want so much more for her. I want her to have a career, a marriage and family. I want her to experience life on her own, without her parents watching her every move like hawks. The letting go is the hard part and I honestly thought I would be doing this in a much different scenario. But alas, my "letting go" is much different that someone who has a 15 year daughter who DOES NOT have cancer. What hurts the most is that during this struggle, we moved her 200 miles away from the only friends she has ever known. If it wasn't for her relapse, she would have made new friends, but damn this disease had to go and ruin that too.
Last week Lauren had a breakdown and told me that she has not been happy in a month or so (most likely right around the week she spent in California visiting her two best friends -- or rather once she got back here). She took a page from Mom's favorite book and has been hiding it and just smiling that huge smile to make me believe everything is okay. Go figure. I taught her well. My heart continually breaks into pieces and I really do not know how to put them back together again anymore. Hence, "the dark side". I wish I could fix everything but I have to start by fixing myself first. How do I make myself happy and content with this life when I know how unhappy my daughter is? How scared and afraid she is and not wanting to bring it up with me for fear of hurting my happiness. Geez. She's hiding her pain from me and I am hiding my pain from her, constantly sacrificing our own well being for the sake of the other.
It seems we are both stuck in this dark place and I myself do not know the way out so how in the world am I supposed to take her hand and lead her out?
peace & <3
Last week Lauren had a breakdown and told me that she has not been happy in a month or so (most likely right around the week she spent in California visiting her two best friends -- or rather once she got back here). She took a page from Mom's favorite book and has been hiding it and just smiling that huge smile to make me believe everything is okay. Go figure. I taught her well. My heart continually breaks into pieces and I really do not know how to put them back together again anymore. Hence, "the dark side". I wish I could fix everything but I have to start by fixing myself first. How do I make myself happy and content with this life when I know how unhappy my daughter is? How scared and afraid she is and not wanting to bring it up with me for fear of hurting my happiness. Geez. She's hiding her pain from me and I am hiding my pain from her, constantly sacrificing our own well being for the sake of the other.
It seems we are both stuck in this dark place and I myself do not know the way out so how in the world am I supposed to take her hand and lead her out?
peace & <3
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