When tucking Lauren into bed at night, I would say "arrivederci" and she would say "au revoir" which both mean "until we meet again". Both words are on my list of tattoos to get this year. We stole it from one of our favorite movies, 13 going on 30.
Last year brought with it a lot of heartache, to say the least, not to mention a feeling of hopelessness that I have never felt before in my life. I would say that, up until Lauren had the psychic reading in July, I was still hopeful that the cannabis oil was going to work. It was then that my hope began to fade and I began to come to terms with what was to come.
I had to continually remind myself that this was Lauren's journey, not mine. She is but part of my journey. Someone given to me to nurture and teach, only she taught me more than I could have ever taught her. I still have panic attacks with thoughts of whether I said all I needed to say. Things I may have forgotten.
In the last two days of her life, I prayed for her to go. I whispered in her ear how much we loved her and that it was okay. That we would be okay. I reminded her that I would keep my promise to take care of Jim. She was so worried about him. Even when the psychic channeled Lauren when she was sedated, less than 48 hours before she took her last breath, Lauren told her she was most worried about her dad. She said that she felt we were not ready yet. That is why I felt it was important for her to know we were and that we would be strong, for her.
I have had to watch my child endure more than most parents ever will. Things only nightmares are made of. Her suffering the last 12 hours. Almost like the final act of a horrible tragedy. I hated that she felt her identity had been stolen. As her mom, I wanted to fix EVERYTHING. But I could not and it will haunt me for the rest of my life.
I don't even know where I am these days. I am coping. That is the best that I can do. I guess I am lucky that I don't have anyone saying "get out, you will feel better" or "it is time to move on" ... In fact, I really don't have anyone saying anything. Sometimes it is good. I need the space. But sometimes the silence can be deafening, frightening, terrifying. But, I digress. I need that perfect someone that doesn't say "what do you need" but just does it.
This year is a new beginning for me. I was not ready to be an empty-nest'er. I am only 41 years old. When I stare into her eyes in the pictures I have hanging, I feel her warmth surround me. She is nurturing me.
Showing posts with label childhood cancer. Show all posts
Showing posts with label childhood cancer. Show all posts
Wednesday, January 22, 2014
Thursday, October 24, 2013
Rinse, lather, repeat.
Rinse, lather, repeat. That is how I feel like my life is going right now. I am on a routine and routines are good, right? Just so you know, I hate my routine.
I have been thinking in the back of my head for quite some time about how I have been neglecting this blog. Once Lauren posted the now infamous #LolasBucketList, my attention turned to her new blog, Love Like Lola and the completion of the aforementioned list. When things took a turn for the worst, I had a hard enough time keeping the Team Lola Facebook page updated, much less two different blogs. Alas, I digress. It is what it is...
Dates. They play an ever changing role in our lives. Births. Graduations. Weddings. Anniversaries. Milestones. Since the death of Lauren's best friend Megan in June 2009, I had always told Lauren don't dwell on the day that she died but rejoice on her birthday. We set off balloons to Megan every year since on her birthday in November. But as much as I would say that, I know that day would forever be etched in her memory. June 10th was the day we were told to go home and love one another, because there was nothing more that could be done to help Lauren and her fight against the worst swear word in the English language - cancer.
I tried to stay as optimistic and upbeat as I could from that day forward. If she wanted to talk about "stuff" then we would, but I would never bring it up on my own. I worry myself now about the things that must have crossed her mind. How she must have been thinking about her own mortality. It literally breaks my heart when I think about it. I remember when hospice delivered the oxygen tanks and how long the concentrator stayed unused in a corner. My optimism in believing that it would be weeks if not months before she would even need it. Sigh. If I would have known that I only had two more months with her, how I would have done things so differently.
When her NP told us about George Mark, I remembered a dear friend in my same situation saying it wasn't for her and her family. I hesitated. I spoke briefly to Lauren about it. We had many discussions about me stepping back and taking back my role as Mom and letting hospice take care of her. Of course, I would still need to administer medications round the clock but by this point, she was sleeping with me in my king size bed. It was easy. The night before we decided to go to GM, Lauren was restless and in pain for most of the night. She was still having problems with nausea as well. At one point, she woke up and told me "I think its time. Tonight will be the night mom." I wasn't sure if she was dreaming or not and I told her "That's fine bebe. If it is tonight, then you should not be scared." I laid awake watching her every breath, looking for movement in her chest. Nope, tonight would NOT be the night.
I have briefly mentioned on a few occasions about a psychic reading that Lauren had when we were in LA. Without going into it too much for privacy reasons, I will say that after speaking to the psychic, Lauren had a calm about her and life just made more sense to her. But she was solemn. Reasons became more clear. Unanswered questions were answered. She was holding on for so long because of us, her family, her loved ones. She always put others first before herself. She waited until she thought we were ready and then she did what we told her to do, she let go. I know it was hard for her. She loves us so much and having to watch us go through the pain of losing her was weighing on her every thought.
When I got the news one day after arriving at GM that radiation was no longer an option, my heart sank. She would not be leaving GM like we had planned and moving into our new house in Sacramento. It was Friday and my mom and Tyler were in Reno packing and Jim in Sac working. I called Jim and we decided to drop everything and they would come to us and they would bring Lola, Lauren's beloved child pup. I took Lauren for a walk in her wheelchair to break the painful news to her. God how many times have I had to have these conversations, but this one, this is it. We cried. She played the organ and the piano and we went back to the room. She loved George Mark from the moment we arrived and even asked me on that first day "Can I die here?" (because of television, she had this wild idea that she didn't want to die at home and burden us with that memory) Oh yeah, and she got to throw a slushy on one of her nurses from Children's. It was on her bucketlist =) There is a video on the Love Like Lola site.
They arrived late and mom and Tyler settled into the apartment and Jim and I stayed in the room with Lauren. I had them move in a full size hospital bed that I could sleep in with her. She was on high levels of oxygen by this time and in constant pain, but she was lucid and very aware and talkative. We made a plan to invite a few close friends to visit Saturday. Jim and Tyler went out for surprise tattoos in Lauren's honor while she visited with her friends. They made painted hand-print pictures, laughed hard and had a great time. None of us knew that this would be the last time they would see each other. Plans were made for them to come back the next day, but she began to deteriorate quickly and asked me to not let anymore visitors in, as she was very adamant that she didn't want anyone to see her like that. Always my strong girl.
The last twenty four hours of Lauren's life were the worst, for me, that I have ever had to endure. There are no words to describe the excruciating pain you feel having to watch your child suffer. While we had already started her on the heavy hitter sedation drug and had her on the maximum oxygen, each time her poor little cancer infected body took a breath, her chest would rise and then fall back, and I could tell it was difficult. The end stages of life are not beautiful like in the movies. The last ten hours of her life I begged her to let go. I promised her that it would not be scary. I sang to her and held her hand so tightly. Jim laid on the bed to her right and me in a chair on the left side of her. We stroked her hair and kissed her cheeks and told her that we were ready for her to go. We would be sad, but it was time. Please let go baby. You don't need to suffer anymore.
Shortly before 8am on Thursday, August 8th, Jim noticed that the swelling was back on her right side. The right side. It's always been the problematic side, but also the same side as her port (which is why we had to battle her the day before when her port stopped working - theorizing that it was tumor/end stage related - and had to start a peripheral IV of which I had to hold her down to get it done). The swelling was visually alarming, but in the back of my mind it was just another symptom to throw in that pile of things that I was just unable to control. I wanted to vomit. I stood up and I shouted "Why are you doing this to us God? Why are you letting her suffer like this and making us watch it? I just don't understand!" and at that very moment, Lauren took her last breath. Sweet dreams bebe. Rest well.
George Mark was supposed to be a transition place for Lauren until we got moved. Two days after we lost Lauren, my family moved from Reno to Sac. The house is smaller but I like small. Its cozy. Thankfully between my mother and Danielle, Tyler's girlfriend, Lauren's room was mostly packed. Her bed was still up and made. I laid down in it and held her blanket close, inhaling her scent. Ugh. That vomit feeling again. I still have all of her stuff in boxes on one side of the garage. It takes up one side of the garage! I tried a couple of weeks ago to look through it. I've bought purple plastic bins to preserve certain things. I got as far as opening the lid of one box and couldn't bear to go any farther. In time right?
I tried for hours on the day she passed to figure out what all the eights meant. I mean, August 8 at 8am. Then one of Lauren's friends mentioned the infinity sign and it all made sense. Lauren loved the infinity sign and even had a tattoo of it on her wrist that said "stay strong". Her first of three. Tyler and I have both gone out and got our own renditions of the infinity sign. It will always have a very special meaning for us. She was telling us that she would be with us forever.
We had her Celebration of Life on September 8th. It was amazing and beautiful and everything that was Lauren. We had everyone bring her favorite foods and it was a crazy potluck we affectionately called #EatLikeLola potluck. Some of her dear friends spoke about her and we had two amazing singing performances, one of which was Lauren's favorite song "Warrior" by Demi Lovato. I displayed all of her art from her room along with 70+ pics of her wearing sunglasses. There is a video of it on the Love Like Lola website as well. Thank you so much to everyone who came to say their final goodbyes and to remember Lauren. It was standing room only!
The first couple of weeks after we moved were filled with unpacking, organizing, and decorating. As things started to calm down, I still had the Celebration to plan. I am hoping to find a part time job soon to fill some time. I have cared for Lauren for three and a half years, round the clock. That constant worry feeling is no longer there, for obvious reasons. I often find myself irritable and restless. I do craft projects when those moments hit. There's always candy crush too. =) But honestly, when the bad days come, they hit hard and even the thought of having to work on a day like that is not appealing to me in the slightest.
Its been eleven weeks today. It still feels like yesterday. I made plans to join a support group for parents but haven't gone yet. They only meet once a month. I've spoken twice to palliative nurses at the hospital over the phone. It was nice to let some things out. I have so many memories of Lauren, especially over the June and early July. Fresh GOOD memories. But the ones that are etched in my memories right now are from the last three days of her life. They are not full of joy and bliss. They are straight up out of a horror story and they play over and over in my mind. The picture in this post is the very last picture that I took of her. Six days later she was gone.
My mother went home today. She has stayed with us a total of 17 months in the last three and a half years. I am so thankful that she has the ability to do this. I don't know what I would have done without her. I love you mom and I will miss you. But today, the band-aid was ripped off and I feel as though I am starting the process all over again. This time though, there will be no more major changes. This time I can start to grieve properly and start to settle in my new life, without my daughter.
If you are still with me, thank you for taking the time to read this. It has been a few months in the making and there is so much more I could probably include but I have already spent two days composing this one. It is time to hit the post button and share it on social media. The first thing I am going to do tomorrow is make a list. I need to keep myself busy. I need a list of things that need to be done (more boxes to unpack - procrastinating), a list of classes I want to take and a list for getting started on the creation of The Love Like Lola Foundation. I will also be updating #LolasBucketList with everything that has been accomplished by our wonderful friends around the world as well as anything in the future, as I plan to take care of most of the travel items to spread her ashes.
Really, all I can do right now is live moment to moment. Rinse, lather, repeat.
My beautiful baby girl ... I can no longer see you with my eyes or touch you with my hands, but I will feel you in my heart forever.
#LoveLikeLola
I have been thinking in the back of my head for quite some time about how I have been neglecting this blog. Once Lauren posted the now infamous #LolasBucketList, my attention turned to her new blog, Love Like Lola and the completion of the aforementioned list. When things took a turn for the worst, I had a hard enough time keeping the Team Lola Facebook page updated, much less two different blogs. Alas, I digress. It is what it is...
Dates. They play an ever changing role in our lives. Births. Graduations. Weddings. Anniversaries. Milestones. Since the death of Lauren's best friend Megan in June 2009, I had always told Lauren don't dwell on the day that she died but rejoice on her birthday. We set off balloons to Megan every year since on her birthday in November. But as much as I would say that, I know that day would forever be etched in her memory. June 10th was the day we were told to go home and love one another, because there was nothing more that could be done to help Lauren and her fight against the worst swear word in the English language - cancer.
I tried to stay as optimistic and upbeat as I could from that day forward. If she wanted to talk about "stuff" then we would, but I would never bring it up on my own. I worry myself now about the things that must have crossed her mind. How she must have been thinking about her own mortality. It literally breaks my heart when I think about it. I remember when hospice delivered the oxygen tanks and how long the concentrator stayed unused in a corner. My optimism in believing that it would be weeks if not months before she would even need it. Sigh. If I would have known that I only had two more months with her, how I would have done things so differently.
When her NP told us about George Mark, I remembered a dear friend in my same situation saying it wasn't for her and her family. I hesitated. I spoke briefly to Lauren about it. We had many discussions about me stepping back and taking back my role as Mom and letting hospice take care of her. Of course, I would still need to administer medications round the clock but by this point, she was sleeping with me in my king size bed. It was easy. The night before we decided to go to GM, Lauren was restless and in pain for most of the night. She was still having problems with nausea as well. At one point, she woke up and told me "I think its time. Tonight will be the night mom." I wasn't sure if she was dreaming or not and I told her "That's fine bebe. If it is tonight, then you should not be scared." I laid awake watching her every breath, looking for movement in her chest. Nope, tonight would NOT be the night.
I have briefly mentioned on a few occasions about a psychic reading that Lauren had when we were in LA. Without going into it too much for privacy reasons, I will say that after speaking to the psychic, Lauren had a calm about her and life just made more sense to her. But she was solemn. Reasons became more clear. Unanswered questions were answered. She was holding on for so long because of us, her family, her loved ones. She always put others first before herself. She waited until she thought we were ready and then she did what we told her to do, she let go. I know it was hard for her. She loves us so much and having to watch us go through the pain of losing her was weighing on her every thought.
When I got the news one day after arriving at GM that radiation was no longer an option, my heart sank. She would not be leaving GM like we had planned and moving into our new house in Sacramento. It was Friday and my mom and Tyler were in Reno packing and Jim in Sac working. I called Jim and we decided to drop everything and they would come to us and they would bring Lola, Lauren's beloved child pup. I took Lauren for a walk in her wheelchair to break the painful news to her. God how many times have I had to have these conversations, but this one, this is it. We cried. She played the organ and the piano and we went back to the room. She loved George Mark from the moment we arrived and even asked me on that first day "Can I die here?" (because of television, she had this wild idea that she didn't want to die at home and burden us with that memory) Oh yeah, and she got to throw a slushy on one of her nurses from Children's. It was on her bucketlist =) There is a video on the Love Like Lola site.
They arrived late and mom and Tyler settled into the apartment and Jim and I stayed in the room with Lauren. I had them move in a full size hospital bed that I could sleep in with her. She was on high levels of oxygen by this time and in constant pain, but she was lucid and very aware and talkative. We made a plan to invite a few close friends to visit Saturday. Jim and Tyler went out for surprise tattoos in Lauren's honor while she visited with her friends. They made painted hand-print pictures, laughed hard and had a great time. None of us knew that this would be the last time they would see each other. Plans were made for them to come back the next day, but she began to deteriorate quickly and asked me to not let anymore visitors in, as she was very adamant that she didn't want anyone to see her like that. Always my strong girl.
The last twenty four hours of Lauren's life were the worst, for me, that I have ever had to endure. There are no words to describe the excruciating pain you feel having to watch your child suffer. While we had already started her on the heavy hitter sedation drug and had her on the maximum oxygen, each time her poor little cancer infected body took a breath, her chest would rise and then fall back, and I could tell it was difficult. The end stages of life are not beautiful like in the movies. The last ten hours of her life I begged her to let go. I promised her that it would not be scary. I sang to her and held her hand so tightly. Jim laid on the bed to her right and me in a chair on the left side of her. We stroked her hair and kissed her cheeks and told her that we were ready for her to go. We would be sad, but it was time. Please let go baby. You don't need to suffer anymore.
Shortly before 8am on Thursday, August 8th, Jim noticed that the swelling was back on her right side. The right side. It's always been the problematic side, but also the same side as her port (which is why we had to battle her the day before when her port stopped working - theorizing that it was tumor/end stage related - and had to start a peripheral IV of which I had to hold her down to get it done). The swelling was visually alarming, but in the back of my mind it was just another symptom to throw in that pile of things that I was just unable to control. I wanted to vomit. I stood up and I shouted "Why are you doing this to us God? Why are you letting her suffer like this and making us watch it? I just don't understand!" and at that very moment, Lauren took her last breath. Sweet dreams bebe. Rest well.
George Mark was supposed to be a transition place for Lauren until we got moved. Two days after we lost Lauren, my family moved from Reno to Sac. The house is smaller but I like small. Its cozy. Thankfully between my mother and Danielle, Tyler's girlfriend, Lauren's room was mostly packed. Her bed was still up and made. I laid down in it and held her blanket close, inhaling her scent. Ugh. That vomit feeling again. I still have all of her stuff in boxes on one side of the garage. It takes up one side of the garage! I tried a couple of weeks ago to look through it. I've bought purple plastic bins to preserve certain things. I got as far as opening the lid of one box and couldn't bear to go any farther. In time right?
I tried for hours on the day she passed to figure out what all the eights meant. I mean, August 8 at 8am. Then one of Lauren's friends mentioned the infinity sign and it all made sense. Lauren loved the infinity sign and even had a tattoo of it on her wrist that said "stay strong". Her first of three. Tyler and I have both gone out and got our own renditions of the infinity sign. It will always have a very special meaning for us. She was telling us that she would be with us forever.
We had her Celebration of Life on September 8th. It was amazing and beautiful and everything that was Lauren. We had everyone bring her favorite foods and it was a crazy potluck we affectionately called #EatLikeLola potluck. Some of her dear friends spoke about her and we had two amazing singing performances, one of which was Lauren's favorite song "Warrior" by Demi Lovato. I displayed all of her art from her room along with 70+ pics of her wearing sunglasses. There is a video of it on the Love Like Lola website as well. Thank you so much to everyone who came to say their final goodbyes and to remember Lauren. It was standing room only!
The first couple of weeks after we moved were filled with unpacking, organizing, and decorating. As things started to calm down, I still had the Celebration to plan. I am hoping to find a part time job soon to fill some time. I have cared for Lauren for three and a half years, round the clock. That constant worry feeling is no longer there, for obvious reasons. I often find myself irritable and restless. I do craft projects when those moments hit. There's always candy crush too. =) But honestly, when the bad days come, they hit hard and even the thought of having to work on a day like that is not appealing to me in the slightest.
Its been eleven weeks today. It still feels like yesterday. I made plans to join a support group for parents but haven't gone yet. They only meet once a month. I've spoken twice to palliative nurses at the hospital over the phone. It was nice to let some things out. I have so many memories of Lauren, especially over the June and early July. Fresh GOOD memories. But the ones that are etched in my memories right now are from the last three days of her life. They are not full of joy and bliss. They are straight up out of a horror story and they play over and over in my mind. The picture in this post is the very last picture that I took of her. Six days later she was gone.
My mother went home today. She has stayed with us a total of 17 months in the last three and a half years. I am so thankful that she has the ability to do this. I don't know what I would have done without her. I love you mom and I will miss you. But today, the band-aid was ripped off and I feel as though I am starting the process all over again. This time though, there will be no more major changes. This time I can start to grieve properly and start to settle in my new life, without my daughter.
If you are still with me, thank you for taking the time to read this. It has been a few months in the making and there is so much more I could probably include but I have already spent two days composing this one. It is time to hit the post button and share it on social media. The first thing I am going to do tomorrow is make a list. I need to keep myself busy. I need a list of things that need to be done (more boxes to unpack - procrastinating), a list of classes I want to take and a list for getting started on the creation of The Love Like Lola Foundation. I will also be updating #LolasBucketList with everything that has been accomplished by our wonderful friends around the world as well as anything in the future, as I plan to take care of most of the travel items to spread her ashes.
Really, all I can do right now is live moment to moment. Rinse, lather, repeat.
My beautiful baby girl ... I can no longer see you with my eyes or touch you with my hands, but I will feel you in my heart forever.
#LoveLikeLola
Tuesday, May 7, 2013
Sharing Is Caring
A little over a year ago I was inspired to start this blog. I had been contemplating it for some time. I had been journaling on Caringbridge, mostly about Lauren's journey through treatment. I needed something that I could call my own, while still keeping everyone up to date on Lauren. What was my inspiration you say? It was attending the Stupid Cancer OMG! Summit for Young Adults.
I signed Lauren and I up for this conference for different reasons, yet they were so similar. We were both in desperate need of "fitting in" in a world where we were lost. My friends came to my rescue in the beginning and wrapped their loving protective arms around me, but after the initial shock wore off and things became routine, they had their own lives to get back to while mine stayed on cruise control in Cancerville. The best way to describe how I was feeling is to listen to the song Pardon Me, by Incubus.
So Pardon me while I burst into flames.
I've had enough of the world, and its people's mindless games
So Pardon me while I burn, and rise above the flame
Pardon me, pardon me. I'll never be the same.
I needed a support group or something similar and I found that at OMG2012! I found a renewed spirit that I didn't want to end. Ever. I wanted to place all of these new friends in my purse and take them home with me so that I would have my posse with me at all times. Luckily there's this thing called social media, and while I would love to have all these friends as close as possible, they too have their own lives and keeping in touch via Facebook and Twitter was what I had to settle with for now.
A year has gone by. Over the last year we have been embraced by the Stupid Cancer community in ways I could have never imagined. We were guests on the Stupid Cancer Radio Show and a pic posted of Lauren to cheer her on during treatment is THE most viral photo to date with over 450k likes and over three million people reached. WOW.
But the most powerful to date, for me, is being asked to be on the panel of other caregivers (parents) at the OMG2013 Summit. I felt so honored that they had enough confidence in me and my experiences as a caregiver to Lauren to ask this of me and I honestly couldn't wait to share. I knew that last year's summit was GREAT, but this year, 2013, was going to be AWESOME!
Everyone kept asking me if I was nervous about being a panelist. When you talk about cancer as much as I do, it becomes second nature. I am telling you right now, sans a degree/medical school, I am an honorary Momcologist (mom/nurse/oncologist). If you were to ask me all of Lauren's past and present medication list, I can name it off AND spell every single one (yes, I do have a cheat sheet on my iPhone but that's so I can print it out instead of writing down every single one - she currently takes about 80 pills per day including herbal supplements).
I also feel like I am an expert on telling people what NOT to do! I think all of my fellow panelists reiterated over and over that you HAVE to take time out for yourself. How do we know? Because we didn't and we all suffered for it. Asking for help has never been easy for me and still, to this day, I have trouble reaching out when I need the help. Setting up the fundraiser to help with travel for our Alabama trips wasn't even my idea but a really good friend's and I am so glad I took her advice. But I would have never done that on my own.
Aside from congregating with other Mom & Dad caregivers at OMG2013, I also attended a session on Healthcare Legislation and Reform as well as Expressive Writing For Wellness And Personal Growth, both very important topics to me. In the healthcare session, I learned what options we will have in the future in regards to insurance (something I've always worried about for both Lauren and myself; both having pre-existing conditions). The expressive writing session helped me (and Lauren - the only session we attended together) with the struggling I encounter on how much I want to share. I think it is important to share as much as possible in the hopes that what I am going through will help other Momcologists on their own journeys. And that is all I want to do ... contribute & share.
I met some pretty awesome survivors and caregivers at OMG2013. People of all walks of life, sharing in the same misfortune. Sharing. I love that word and if I didn't take anything away from the summit (and I did!), it is sharing Lauren and her journey with others. Sharing her has been extremely difficult for me since her diagnosis. Just ask her. Two summer camps cancelled at the last minute because I couldn't bear to be away from her (I'm talking about full on anxiety attacks at the thought of her being away from me for more than a few hours). Last year, she went to all the sessions with me. This year, we only went to one together. What I do know is that, if I am going to share her with anyone, it would be the 450+ new friends we made at OMG2013. I trust them. They love her too. Something we would have never found without Stupid Cancer.
Thank you Stupid Cancer.
Be sure to check out the pics from last year and this year ->> link on the right =)
PS. Lauren's CT scan is scheduled for tomorrow! Will update as soon as I get the report =)
I signed Lauren and I up for this conference for different reasons, yet they were so similar. We were both in desperate need of "fitting in" in a world where we were lost. My friends came to my rescue in the beginning and wrapped their loving protective arms around me, but after the initial shock wore off and things became routine, they had their own lives to get back to while mine stayed on cruise control in Cancerville. The best way to describe how I was feeling is to listen to the song Pardon Me, by Incubus.
So Pardon me while I burst into flames.
I've had enough of the world, and its people's mindless games
So Pardon me while I burn, and rise above the flame
Pardon me, pardon me. I'll never be the same.
I needed a support group or something similar and I found that at OMG2012! I found a renewed spirit that I didn't want to end. Ever. I wanted to place all of these new friends in my purse and take them home with me so that I would have my posse with me at all times. Luckily there's this thing called social media, and while I would love to have all these friends as close as possible, they too have their own lives and keeping in touch via Facebook and Twitter was what I had to settle with for now.
A year has gone by. Over the last year we have been embraced by the Stupid Cancer community in ways I could have never imagined. We were guests on the Stupid Cancer Radio Show and a pic posted of Lauren to cheer her on during treatment is THE most viral photo to date with over 450k likes and over three million people reached. WOW.
But the most powerful to date, for me, is being asked to be on the panel of other caregivers (parents) at the OMG2013 Summit. I felt so honored that they had enough confidence in me and my experiences as a caregiver to Lauren to ask this of me and I honestly couldn't wait to share. I knew that last year's summit was GREAT, but this year, 2013, was going to be AWESOME!
Everyone kept asking me if I was nervous about being a panelist. When you talk about cancer as much as I do, it becomes second nature. I am telling you right now, sans a degree/medical school, I am an honorary Momcologist (mom/nurse/oncologist). If you were to ask me all of Lauren's past and present medication list, I can name it off AND spell every single one (yes, I do have a cheat sheet on my iPhone but that's so I can print it out instead of writing down every single one - she currently takes about 80 pills per day including herbal supplements).
I also feel like I am an expert on telling people what NOT to do! I think all of my fellow panelists reiterated over and over that you HAVE to take time out for yourself. How do we know? Because we didn't and we all suffered for it. Asking for help has never been easy for me and still, to this day, I have trouble reaching out when I need the help. Setting up the fundraiser to help with travel for our Alabama trips wasn't even my idea but a really good friend's and I am so glad I took her advice. But I would have never done that on my own.
Aside from congregating with other Mom & Dad caregivers at OMG2013, I also attended a session on Healthcare Legislation and Reform as well as Expressive Writing For Wellness And Personal Growth, both very important topics to me. In the healthcare session, I learned what options we will have in the future in regards to insurance (something I've always worried about for both Lauren and myself; both having pre-existing conditions). The expressive writing session helped me (and Lauren - the only session we attended together) with the struggling I encounter on how much I want to share. I think it is important to share as much as possible in the hopes that what I am going through will help other Momcologists on their own journeys. And that is all I want to do ... contribute & share.
I met some pretty awesome survivors and caregivers at OMG2013. People of all walks of life, sharing in the same misfortune. Sharing. I love that word and if I didn't take anything away from the summit (and I did!), it is sharing Lauren and her journey with others. Sharing her has been extremely difficult for me since her diagnosis. Just ask her. Two summer camps cancelled at the last minute because I couldn't bear to be away from her (I'm talking about full on anxiety attacks at the thought of her being away from me for more than a few hours). Last year, she went to all the sessions with me. This year, we only went to one together. What I do know is that, if I am going to share her with anyone, it would be the 450+ new friends we made at OMG2013. I trust them. They love her too. Something we would have never found without Stupid Cancer.
Thank you Stupid Cancer.
Be sure to check out the pics from last year and this year ->> link on the right =)
PS. Lauren's CT scan is scheduled for tomorrow! Will update as soon as I get the report =)
Saturday, February 2, 2013
The Red Pill or The Blue Pill?
Lauren's first roommate was a 20 year old Leukemia patient. She was about four months into her two year treatment plan. Her mom was a plethora of information and I am not sure I could have made it that first week without her. The girl was a huge help for Lauren too. She showed Lauren her broviac and we talked about what it felt like and how sore she would be the first couple of days. I think she made Lauren feel more at ease in the worst possible situation. Unless you are on the same protocol, chances of seeing a roommate you once had are slim. So when we didn't see her for a few months I thought nothing of it, until Lauren was admitted to the immuno-compromised wing of the oncology floor for IV pain management with a zero ANC. When I first saw her mom, I was actually happy (I was naive back then and didn't think that not seeing someone might mean the worst possible scenario). After we hugged, she pulled me into the kitchen and told me that her daughter had a bad reaction (neuro) to chemo and she was completely immobile, unable to walk, talk, eat. The good news? She was still alive. She may make a full recovery after months and months of rehabilitation. I saw the girl's mom about six months later, when Lauren was getting her broviac taken out and I was hanging in the cafeteria waiting. They were being discharged after over seven months straight in the hospital. I was so happy for them. She was actually walking on her own now and making slow but good progress. I didn't bother asking her about prognosis. It didn't matter. She was alive and going home.
What happened to this girl scared the crap out of me and it has haunted me for the last two years. What if the next protocol we decide to give Lauren does the same thing to her? Exactly how much can one's body take before it finally gives in? Have you ever actually looked at the ingredients for some of these chemotherapy drugs? The suffering they go through while this poison courses through their body. I struggle with the treatment decisions we've made, I've made. Am I being selfish putting Lauren through conventional treatment? Watching your child suffer is the worst possible thing in the world a parent can experience. Your only reason for living is to take care of this child and yet, there is nothing you can do to make them better. Not having control of the situation is unbearably torturous. I have learned over time that I have to let go of what I can't control, but it seems as of late that there is NOTHING in the world under my control.
We got the worst possible news we could get last week. Lauren's tumors are growing, during treatment. Well, one of them is still growing. She also has a new spot that was never reported. So where she stands now is spot #1 and #2 are stable nodules (both in the left lung). Spot #3 has grown a couple of millimeters (located subpleural; right lung) and the SUV has risen and now this new tiny spot that was missed over and over at the base of her right lung. While Lauren's cancer has never appeared to be super aggressive, it is still very smart and continually gives us the finger as it grows stronger and more resistant to what we throw at it. Unfortunately, that is what cancer does.
We met with the conventional team (Onc #1) on Thursday. I had really hoped for more options but as it stands, one was presented. It's a Phase 1 clinical trial at UCSF using Topotecan, Cytoxan (a nitrogen mustard alkylating agent) and Rapamycin (an immunosuppressant drug). While it is a phase 1, all of these agents have been tested separately, so the "1" just means that they are testing these as a new combo. Ironically, when Lauren relapsed the first time in November 2011, low doses of Rapamycin was discussed with her Naturopath. The plan would be to get a few cycles in, repeat imaging to measure response and if there is a response, surgery to remove the remaining nodules, though there is some discussion on whether surgery on both lungs is an option. Theoretically, we'd hope that the remaining small stable nodules would be shrunk by the protocol, only leaving the larger one to remove. The process of removing them is what we are not all on the same page about. The conventional team would love to cut them out, while Lauren's Naturopath thinks that radio frequency or cryo-ablation is a better less invasive option, even though surgically they would be going in thoracoscopically.
The CAM team presented a much different plan. Barring any complications with insurance authorizations (and disagreements from the conventional team), we would take Lauren to Kentucky, where a skilled Interventional Radiologist would ablated the lesions using radio frequency or cryo, while at the same time, injecting the lesions with either BCG (a tuberculosis vaccine) or Iscador. The purpose of the injections would be to further push a response from Lauren's natural immune system. The RFA or CA would push that type of response, where surgery would not. Then add the injection and BAM! her own body's natural defenses should kick in. If we got clear margins, she would be started immediately on the TM (lowers copper) and most likely Iscador sub-q injections. We would need her to stay at a NED status for at least six months (before that sigh of relief comes), but ideally for two years. If at any point during those two years she relapses, then all bets are off and we are back at square one. The good news is that the doctor in Kentucky has had really good results with previous patients; some out as far as 10 years with NED. It's a really promising idea, but I am so damn afraid that insurance will nix this one quickly and from what I understand, the treatment out of pocket is around $15k. How the hell do you put a price on the health of your child? I'd sell everything I owned if it meant it would cure Lauren's cancer. I know every other parent would say the same thing. If insurance rejects this plan, we could still do the ablation procedure using a local doctor (or someone from the Bay area) without the injections (although they are really key in this treatment plan).
So, here we are again. This will be Lauren's FIFTH line of treatment but I am happy to still have options. Some families I know do not have that luxury and it breaks my heart. My first step will be calling the insurance to find out in a general way if they will cover ablation for pulmonary lesions/metastatic disease. Without knowing the answer, we cannot move forward. In addition, I am waiting for more information from Lauren's ND about a test that can be ran prior to starting the Topetecan, as it's sister, Irinotecan has been known to certain people with a specific variance in their enzymes to be *more* toxic to a person without this variance. It's still unclear if this is a problem with Topetecan. Hence, the opening story ... my fear of a toxic reaction she may never recover from. And the side effects list from the Cytoxan are crazy. It in itself is a carcinogen. Again choosing the lesser of two evils isn't easy at all. So the very chemo we use to save her life may cause a secondary cancer. Oh, that's just great (said as sarcastically as humanly possible). Sigh.
So, do we choose the red pill or the blue pill?
peace and <3
-cherri
What happened to this girl scared the crap out of me and it has haunted me for the last two years. What if the next protocol we decide to give Lauren does the same thing to her? Exactly how much can one's body take before it finally gives in? Have you ever actually looked at the ingredients for some of these chemotherapy drugs? The suffering they go through while this poison courses through their body. I struggle with the treatment decisions we've made, I've made. Am I being selfish putting Lauren through conventional treatment? Watching your child suffer is the worst possible thing in the world a parent can experience. Your only reason for living is to take care of this child and yet, there is nothing you can do to make them better. Not having control of the situation is unbearably torturous. I have learned over time that I have to let go of what I can't control, but it seems as of late that there is NOTHING in the world under my control.
We got the worst possible news we could get last week. Lauren's tumors are growing, during treatment. Well, one of them is still growing. She also has a new spot that was never reported. So where she stands now is spot #1 and #2 are stable nodules (both in the left lung). Spot #3 has grown a couple of millimeters (located subpleural; right lung) and the SUV has risen and now this new tiny spot that was missed over and over at the base of her right lung. While Lauren's cancer has never appeared to be super aggressive, it is still very smart and continually gives us the finger as it grows stronger and more resistant to what we throw at it. Unfortunately, that is what cancer does.
We met with the conventional team (Onc #1) on Thursday. I had really hoped for more options but as it stands, one was presented. It's a Phase 1 clinical trial at UCSF using Topotecan, Cytoxan (a nitrogen mustard alkylating agent) and Rapamycin (an immunosuppressant drug). While it is a phase 1, all of these agents have been tested separately, so the "1" just means that they are testing these as a new combo. Ironically, when Lauren relapsed the first time in November 2011, low doses of Rapamycin was discussed with her Naturopath. The plan would be to get a few cycles in, repeat imaging to measure response and if there is a response, surgery to remove the remaining nodules, though there is some discussion on whether surgery on both lungs is an option. Theoretically, we'd hope that the remaining small stable nodules would be shrunk by the protocol, only leaving the larger one to remove. The process of removing them is what we are not all on the same page about. The conventional team would love to cut them out, while Lauren's Naturopath thinks that radio frequency or cryo-ablation is a better less invasive option, even though surgically they would be going in thoracoscopically.
The CAM team presented a much different plan. Barring any complications with insurance authorizations (and disagreements from the conventional team), we would take Lauren to Kentucky, where a skilled Interventional Radiologist would ablated the lesions using radio frequency or cryo, while at the same time, injecting the lesions with either BCG (a tuberculosis vaccine) or Iscador. The purpose of the injections would be to further push a response from Lauren's natural immune system. The RFA or CA would push that type of response, where surgery would not. Then add the injection and BAM! her own body's natural defenses should kick in. If we got clear margins, she would be started immediately on the TM (lowers copper) and most likely Iscador sub-q injections. We would need her to stay at a NED status for at least six months (before that sigh of relief comes), but ideally for two years. If at any point during those two years she relapses, then all bets are off and we are back at square one. The good news is that the doctor in Kentucky has had really good results with previous patients; some out as far as 10 years with NED. It's a really promising idea, but I am so damn afraid that insurance will nix this one quickly and from what I understand, the treatment out of pocket is around $15k. How the hell do you put a price on the health of your child? I'd sell everything I owned if it meant it would cure Lauren's cancer. I know every other parent would say the same thing. If insurance rejects this plan, we could still do the ablation procedure using a local doctor (or someone from the Bay area) without the injections (although they are really key in this treatment plan).
So, here we are again. This will be Lauren's FIFTH line of treatment but I am happy to still have options. Some families I know do not have that luxury and it breaks my heart. My first step will be calling the insurance to find out in a general way if they will cover ablation for pulmonary lesions/metastatic disease. Without knowing the answer, we cannot move forward. In addition, I am waiting for more information from Lauren's ND about a test that can be ran prior to starting the Topetecan, as it's sister, Irinotecan has been known to certain people with a specific variance in their enzymes to be *more* toxic to a person without this variance. It's still unclear if this is a problem with Topetecan. Hence, the opening story ... my fear of a toxic reaction she may never recover from. And the side effects list from the Cytoxan are crazy. It in itself is a carcinogen. Again choosing the lesser of two evils isn't easy at all. So the very chemo we use to save her life may cause a secondary cancer. Oh, that's just great (said as sarcastically as humanly possible). Sigh.
So, do we choose the red pill or the blue pill?
peace and <3
-cherri
Thursday, January 10, 2013
Chronic Illness is NOT Okay.
Ever seen the side effects list from a chemotherapy drug? Normally they are listed in three categories -- most likely, less likely and least likely. Under most likely is stuff like nausea and low blood counts while least likely is usually a secondary cancer and death. Usually the most likely will most likely happen. Over the last three years, Lauren has experienced nausea, vomiting, loss of appetite, weight loss (20 lbs in one month), hair loss, hypersensitivity to skin (specifically hands), low blood counts resulting in the need for transfusions, nose bleeds, severe neuropathy that took away her ability to walk unassisted, mucositis so bad she had to be admitted for IV pain management and radiation burns that were in places that NO ONE should ever have skin burns. That's just the short list.
Precursor for the rest of the blog entry -- Lauren and I have talked a lot about how personal these issues are for her, especially being a 15 year old girl, but we both feel that telling her story, in full, may benefit someone else out there that is newly diagnosed. Precautions, at least for some of what she is experiencing, could and should have been taken. Fertility should have been discussed. I've written several times about the seriousness of her radiation side effects. Aside from the fibrosis (no immediate concern, but eventually I am sure she will want to have an intimate relationship), the normal growth of her uterus has been stunted and she will always have the uterus of a 12 year old making it impossible to carry a child to full term. No precautions were taken to harvest eggs or at the very least, tissue so that she could, when the time came, produce her own child. This very thing weighs very heavy with her and it breaks my heart every time we talk about it.
The latest in the barrage of radiation side effects is chronic urethritis, although right now, it is still "undiagnosed". Since September, she has been dealing with classic UTI symptoms, but each time I have them run a culture (this week will be the fourth) nothing grows. Again on Tuesday she presented some pretty serious pain so I had the clinic run another UA. The dip done at the clinic showed WBC and protein present in her urine, but the absence of an increase in her WBC in her blood don't point towards an infection. We opted out of an antibiotic prescription until the culture comes back, because once before the same thing happened yet nothing on the cultures. Anyone who has ever had a UTI or bladder infection knows how uncomfortable and painful they can be. Imagine having those symptoms for over three months. Now, some days are better than others, but when she does have a "flare up" it comes on with a vengeance. The oncologist doesn't really know what to do. The ND thinks that Lauren's body is under a tremendous amount of stress and this is how her body is reacting to the stress. When someone is stressed, nervous or anxious, the organs most affected are the kidneys and bladder so I guess it does make sense that this is where she has the most problems right now. Baths help, as does cold compresses. Medicinally, she is taking some natural stuff (D-Mannose powder and kava capsules) to help, but aren't instant. I have noticed that the more hydrated she is, the better she feels (all around) but it's been difficult to get her to drink massive amounts of water (doc wants 2-3 liters per day). I number the caps of water bottles to keep track. Some days she does really good, but the days where she isn't feeling well (when she really needs it the most) it's almost impossible to get that much water into her little body. It's a touchy subject here at home between the two of us (who said being a caregiver was the easiest job?). Sometimes I become the water police and it's not a fun job (same goes for pills/medications). So today, our home healthcare company delivered 14 liter bags of saline, some pre-filled saline/heparin syringes and a folding IV pole. The only other solution would be to take Lauren to clinic everyday for IV fluids and who knows how much that would cost?!? If she could have her chemo infused here at home she would. You are never as comfortable in the infusion center as you are at home <3
We (me and the ND) talked about hyperbaric oxygen therapy (HBOT) again. I want to explore this more because it can have real healing effects for Lauren and the radiation damage. She is already taking a few things to direct blood supply to the fibrosis to help along the healing process. I am still very open to other "alternative" treatment options as well and believe me, we have discussed some very alternative options. We will never put "all of our eggs in one basket". It's still very hard for me to trust the conventional team and just in the last six months have started to build a relationship. Even though Lauren was treated at CHO and these doctors travel from CHO to Reno, I met Onc#1 the day Lauren was admitted (December 17, 2009) and maybe saw her in-patient once or twice. Our primary was a fellow and he left the hospital in May 2011 to finish up his fellowship in Africa (we still talk in email). He was awesome, but we too had a bit of a rocky road. I am 100% sure it was my persistence but somehow we came to an understanding and it was all good. Most pediatric oncologists aren't open to CAM and I am just happy that ours are (some more reluctantly than others) and have been working wonderfully together. They all love Lauren very much and only want the best for her. That's all I can ask for right?
Now that Lauren is mobile again she has been asking us for a bicycle. We were hesitant because she still has some neuropathy in her feet, primarily the right one. It's impossible for her to stand on her tippy-toes and unless she wants a bike made for a kid, she will need to tippy-toe to stop and start. We didn't think of this when she asked for a bike from the foundation, who adopted us for Christmas. She is now the owner of a hot pink cruiser! We did give her the present a few days early and were disappointed but she was determined to ride with the wind. At that point, it really wasn't safe for her and I was scared to death that she wouldn't be able to stop and would have a bad fall. We searched for adult size tricycles online thinking that would be her best bet while still trying to heal from the neuropathy. Unfortunately, they are not cheap. The same day Jim and I discussed the trike, I got a Facebook message from a dear friend from Dallas. Vickie and Norman Prewitt are family friends who I have known since I was a teenager. Norman was a Firefighter/Paramedic with my dad and I love him like a brother. Their Sunday school class wanted to help our family. Their donation helped us buy Lauren an adult trike and we paid for express shipping to get it here by Christmas. It's perfect for her and it has a basket in the back that Lola can ride in =). Needless to say, we are truly blessed by wonderful friends and family and this Christmas was awesome for our family because of those friends and family. Thank you so much to Vickie and Norman, to The Northern Nevada Children's Cancer Foundation and the office that adopted us (PMA) and everyone else that sent Lauren presents. Our cup runneth over xoxoxo
If you are a close friend, you will know my undying love for all things Bob Marley. His life and music inspire me to be a better person, to love harder. Lauren drew and painted a picture for me for Christmas and I must say I almost cried when I opened it. As any mother can agree, the homemade gifts always mean more...
Lauren wants to do a couple of drawings to raffle off for Team Lola and I think that is a great idea! So stay tuned for her next work of art =)
It's taken me three days to write this blog entry. It's been really tough concentrating and I am glad I am finally done =)
I will close this post with a dedication to a little nine year old named Vinny. I had heard about Vinny through Ariel's momcologist Crystal around a year ago. He has Rhabdomyosarcoma, the same cancer as Ariel. His journey started almost five years ago and he has already been sent home before on hospice only to rally and come back fighting. This time, as his momcologist Sarah writes, is different. A month ago he was expected to live hours or days and he is still holding on but a CaringBridge update last night told us that he is starting to fade slowly. I ask everyone reading this to please lift this family up in prayers. Vinny is so brave and like Lauren, seems too wise for such a young soul.
peace and <3
-cherri
Precursor for the rest of the blog entry -- Lauren and I have talked a lot about how personal these issues are for her, especially being a 15 year old girl, but we both feel that telling her story, in full, may benefit someone else out there that is newly diagnosed. Precautions, at least for some of what she is experiencing, could and should have been taken. Fertility should have been discussed. I've written several times about the seriousness of her radiation side effects. Aside from the fibrosis (no immediate concern, but eventually I am sure she will want to have an intimate relationship), the normal growth of her uterus has been stunted and she will always have the uterus of a 12 year old making it impossible to carry a child to full term. No precautions were taken to harvest eggs or at the very least, tissue so that she could, when the time came, produce her own child. This very thing weighs very heavy with her and it breaks my heart every time we talk about it.
The latest in the barrage of radiation side effects is chronic urethritis, although right now, it is still "undiagnosed". Since September, she has been dealing with classic UTI symptoms, but each time I have them run a culture (this week will be the fourth) nothing grows. Again on Tuesday she presented some pretty serious pain so I had the clinic run another UA. The dip done at the clinic showed WBC and protein present in her urine, but the absence of an increase in her WBC in her blood don't point towards an infection. We opted out of an antibiotic prescription until the culture comes back, because once before the same thing happened yet nothing on the cultures. Anyone who has ever had a UTI or bladder infection knows how uncomfortable and painful they can be. Imagine having those symptoms for over three months. Now, some days are better than others, but when she does have a "flare up" it comes on with a vengeance. The oncologist doesn't really know what to do. The ND thinks that Lauren's body is under a tremendous amount of stress and this is how her body is reacting to the stress. When someone is stressed, nervous or anxious, the organs most affected are the kidneys and bladder so I guess it does make sense that this is where she has the most problems right now. Baths help, as does cold compresses. Medicinally, she is taking some natural stuff (D-Mannose powder and kava capsules) to help, but aren't instant. I have noticed that the more hydrated she is, the better she feels (all around) but it's been difficult to get her to drink massive amounts of water (doc wants 2-3 liters per day). I number the caps of water bottles to keep track. Some days she does really good, but the days where she isn't feeling well (when she really needs it the most) it's almost impossible to get that much water into her little body. It's a touchy subject here at home between the two of us (who said being a caregiver was the easiest job?). Sometimes I become the water police and it's not a fun job (same goes for pills/medications). So today, our home healthcare company delivered 14 liter bags of saline, some pre-filled saline/heparin syringes and a folding IV pole. The only other solution would be to take Lauren to clinic everyday for IV fluids and who knows how much that would cost?!? If she could have her chemo infused here at home she would. You are never as comfortable in the infusion center as you are at home <3
We (me and the ND) talked about hyperbaric oxygen therapy (HBOT) again. I want to explore this more because it can have real healing effects for Lauren and the radiation damage. She is already taking a few things to direct blood supply to the fibrosis to help along the healing process. I am still very open to other "alternative" treatment options as well and believe me, we have discussed some very alternative options. We will never put "all of our eggs in one basket". It's still very hard for me to trust the conventional team and just in the last six months have started to build a relationship. Even though Lauren was treated at CHO and these doctors travel from CHO to Reno, I met Onc#1 the day Lauren was admitted (December 17, 2009) and maybe saw her in-patient once or twice. Our primary was a fellow and he left the hospital in May 2011 to finish up his fellowship in Africa (we still talk in email). He was awesome, but we too had a bit of a rocky road. I am 100% sure it was my persistence but somehow we came to an understanding and it was all good. Most pediatric oncologists aren't open to CAM and I am just happy that ours are (some more reluctantly than others) and have been working wonderfully together. They all love Lauren very much and only want the best for her. That's all I can ask for right?
Now that Lauren is mobile again she has been asking us for a bicycle. We were hesitant because she still has some neuropathy in her feet, primarily the right one. It's impossible for her to stand on her tippy-toes and unless she wants a bike made for a kid, she will need to tippy-toe to stop and start. We didn't think of this when she asked for a bike from the foundation, who adopted us for Christmas. She is now the owner of a hot pink cruiser! We did give her the present a few days early and were disappointed but she was determined to ride with the wind. At that point, it really wasn't safe for her and I was scared to death that she wouldn't be able to stop and would have a bad fall. We searched for adult size tricycles online thinking that would be her best bet while still trying to heal from the neuropathy. Unfortunately, they are not cheap. The same day Jim and I discussed the trike, I got a Facebook message from a dear friend from Dallas. Vickie and Norman Prewitt are family friends who I have known since I was a teenager. Norman was a Firefighter/Paramedic with my dad and I love him like a brother. Their Sunday school class wanted to help our family. Their donation helped us buy Lauren an adult trike and we paid for express shipping to get it here by Christmas. It's perfect for her and it has a basket in the back that Lola can ride in =). Needless to say, we are truly blessed by wonderful friends and family and this Christmas was awesome for our family because of those friends and family. Thank you so much to Vickie and Norman, to The Northern Nevada Children's Cancer Foundation and the office that adopted us (PMA) and everyone else that sent Lauren presents. Our cup runneth over xoxoxo
If you are a close friend, you will know my undying love for all things Bob Marley. His life and music inspire me to be a better person, to love harder. Lauren drew and painted a picture for me for Christmas and I must say I almost cried when I opened it. As any mother can agree, the homemade gifts always mean more...
Lauren wants to do a couple of drawings to raffle off for Team Lola and I think that is a great idea! So stay tuned for her next work of art =)
It's taken me three days to write this blog entry. It's been really tough concentrating and I am glad I am finally done =)
I will close this post with a dedication to a little nine year old named Vinny. I had heard about Vinny through Ariel's momcologist Crystal around a year ago. He has Rhabdomyosarcoma, the same cancer as Ariel. His journey started almost five years ago and he has already been sent home before on hospice only to rally and come back fighting. This time, as his momcologist Sarah writes, is different. A month ago he was expected to live hours or days and he is still holding on but a CaringBridge update last night told us that he is starting to fade slowly. I ask everyone reading this to please lift this family up in prayers. Vinny is so brave and like Lauren, seems too wise for such a young soul.
peace and <3
-cherri
Friday, December 21, 2012
Merry Happy Christmakwanzikah
The last 11 days since my last blog post have been emotionally overwhelming and exhausting. The ups and downs have got me in a fog. Sometimes its easier to retreat than to face the hardships that life throws at us. I retreated as much as I could (I do have a family to take care of), self soothed and feel a little better today. The joys of Christmas shopping have brought me out of a stupor, for now. Every big holiday, unfortunately, also brings about feelings of whether this will be Lauren's last and its extremely consuming. Not to mention that today was supposed to be the end of the world (and the day isn't over yet).
Lauren has been fighting bouts of nausea but never actually vomiting. As many cancer survivors can agree, the nausea is actually worse than the act that follows. She has also had some stomach cramping. Trying to get this all under control has proven to be a not so easy task. The good news is that the mucositis, which we were most afraid of, is pretty much non-existent. This week has been a little harder than usual because she actually received chemo three days in a row plus we drove down to SF the day she received her infusion. Both of us suffer from nervous/anxious stomachs when we are away from home, so that didn't make it any easier at all. She is drinking Eater's Digest tea, from Traditional Medicinals, to help with the nausea and cramping and she loves the taste (peppermint/ginger).
We attended two holiday parties in the last two weeks, one for NNCCF and the other was at the clinic (the day of her chemo). She seems to do better when she is "busy" so while she may have not been feeling the best, being distracted by holiday spirit and little kids made her feel tons better. She also did an interview at the clinic for News 4 - click HERE to watch the video.
Team Lola was contacted a few weeks ago by Gamerosity, a newly founded childhood cancer community. They hold social fundraisers to purchase electronic items such as iPad Minis and Nintendo Gameboys for children with cancer. The founder, Manny, is a childhood cancer survivor and understands what its like to have to be bed-ridden 24/7. To date, they have funded gifts for 14 heroes! Truly amazing! Thank you Manny and Gamerosity for all you do!
I want to close out this post with a dedication to Ariel Rose and the entire Gariano family. Ariel, because of you, many people in this world love deeper, speak sweeter, and most importantly, live each day to its fullest. Your time here on Earth may have been shorter than we all wanted, but in those 14 years, you LIVED and that is what each of us are trying to do each day, guided by the grace of God. While we are sad that you are no longer here with us, we rejoice in knowing that we will meet again someday and you will be waiting for us with open arms.
My wish for all of you is good health and lots of love for the new year <3
peace and love
-cherri
Lauren has been fighting bouts of nausea but never actually vomiting. As many cancer survivors can agree, the nausea is actually worse than the act that follows. She has also had some stomach cramping. Trying to get this all under control has proven to be a not so easy task. The good news is that the mucositis, which we were most afraid of, is pretty much non-existent. This week has been a little harder than usual because she actually received chemo three days in a row plus we drove down to SF the day she received her infusion. Both of us suffer from nervous/anxious stomachs when we are away from home, so that didn't make it any easier at all. She is drinking Eater's Digest tea, from Traditional Medicinals, to help with the nausea and cramping and she loves the taste (peppermint/ginger).
We attended two holiday parties in the last two weeks, one for NNCCF and the other was at the clinic (the day of her chemo). She seems to do better when she is "busy" so while she may have not been feeling the best, being distracted by holiday spirit and little kids made her feel tons better. She also did an interview at the clinic for News 4 - click HERE to watch the video.
Team Lola was contacted a few weeks ago by Gamerosity, a newly founded childhood cancer community. They hold social fundraisers to purchase electronic items such as iPad Minis and Nintendo Gameboys for children with cancer. The founder, Manny, is a childhood cancer survivor and understands what its like to have to be bed-ridden 24/7. To date, they have funded gifts for 14 heroes! Truly amazing! Thank you Manny and Gamerosity for all you do!
I want to close out this post with a dedication to Ariel Rose and the entire Gariano family. Ariel, because of you, many people in this world love deeper, speak sweeter, and most importantly, live each day to its fullest. Your time here on Earth may have been shorter than we all wanted, but in those 14 years, you LIVED and that is what each of us are trying to do each day, guided by the grace of God. While we are sad that you are no longer here with us, we rejoice in knowing that we will meet again someday and you will be waiting for us with open arms.
Ariel Rose - forever 14
My wish for all of you is good health and lots of love for the new year <3
peace and love
-cherri
Monday, December 10, 2012
In the Blink of an Eye
I have really had a hard go of it finding time to update my blog. It's easier sometimes to just post short updates on Facebook, which by the way, I have created a "fan page" for Lauren just for this purpose. So, if you are on FB and haven't done so already, please click the link above and "like" Team Lola's page. =)
Lauren started Doxil on Tuesday, November 27th. We had an awesome visitor (remember Clayton? His mom Danielle and sister Ellie came to visit. Clayton became an Angel on July 11th of this year) who took the edge off of port accessing and the first day of chemo. We stayed in the exam room for the beginning of her infusion because the infusion room was full, by a bunch of dudes! You'd think she'd want to be out there surrounded by guys, but not today. About 10 minutes into the infusion, the pump started going off (My fellow momcologists can relate -- the beeping is NO fun. Of course we know how to silence it. Hell, Lauren even knew how to get rid of the occlusions on the pumps in Oakland). About an hour and a half later, they finally decided to replace the tubing (which meant drawing out the Doxil with a syringe and putting it back in the reservoir). We were there for most of the day - an hour to exam and access, occlusion issues lasting almost two hours and then an hour or so for the actual infusion... As the boys started to go home, we decided to move out into the infusion room. It was stuffy in the exam room with the stupid pump beeping and a couple of nurses trying to fix it.
We have two major concerns with using Liposomal Doxil. The most important and scariest is the cardio toxicity. We are using Trental to help protect Lauren's heart, but according to long term stats, she could experience issues later in life, as an adult. The other concern is severe mucositis. Full blown mucositis in the mouth looks a lot like a horrible case of thrush. We want to keep this at bay mainly because now that Lauren has braces, the breakdown of the tissue in the mouth coupled with the braces may cause cuts/tears that will make her more susceptible to infection. All of the Anthracyclines are known for this and I'd say Lauren had about the worst it can get with the first protocol she was on. It doesn't just affect your mouth, but the entire digestive tract from beginning to end. It's a very common side effect in cancer treatment and the hardest to control. In fact, there really isn't any prevention like Zofran is to nausea. So far she is almost two weeks out from the infusion and has only mentioned some lingering "mucositis like" symptoms a few times. She also started the Etoposide the same week as the Doxil, except it's oral. This is the first oral chemo she has taken and lemme tell you, it's also the cheapest! I am giving it to her at night before she goes to bed so theoretically she sleeps through the worst of what could potentially be some icky nausea and vomiting. So far, she is tolerating it as well. I am trying to stay ahead of the waves of nausea but using Zofran and ginger tea. Her appetite is small and as of last week was dehydrated. A few bouts of dizziness and anemic type symptoms had me worried that she was low on red blood, but her skin's pink tint told me differently. Her hemoglobin was above 14 which made if very clear that she was dehydrated. Onc #1 ordered her to drink three liters of water a day (that's six 16.9 oz water bottles) or IV fluids at home/clinic. The very same day, after pushing her to drink and drink and drink summore' she finally started feeling better. She has also lost 4 lbs and her blood pressure was low. Other signs of dehydration. I've been pushing her (putting numbers 1-6 on the water bottle lids to keep track of what she is drinking) and she has been feeling much better.
You all know how much Lauren and I love Stupid Cancer. Well, we were invited to come on their weekly radio show on the 26th and I have to say it was really fun. My first blog post here was on the OMG2012 Cancer Summit for Young Adults. I am happy to report that I have been asked to be a panelist at OMG2013 on the Caregivers for Teens session and I am beyond excited. Lauren has already started making plans with friends she met last year for "after hours" activities. Here is the link to listen to the radio show.
I've also been dealing with the school situation for Lauren for a few weeks now. She has been enrolled in the re-engagement program here in Reno since September. This program is temporary until they find a place that suits you within the school district. It's really designed for dropouts as they help you earn back lost credits and try to get you "re-engaged" in high school and your education. She started the A+ program, which is online school with onsite tutors if you need them. For almost a month the classroom site was down and then I received a call from the director letting me know that they thought since Lauren wasn't coming in that she would do better with home hospital (a teacher comes to your house for five hours a week and you do curriculum from your zoned HS). Whatever. Honestly if it wasn't against the law, I'd say who cares and not even worry about school. It's very clear that she does not want to physically go back to her zoned HS. She wants to get her GED anyway. The unfortunate part is that because she has missed so much school, she is in no way ready to take the GED. At the very least, she'd need instruction/tutoring to prepare her to test. I finally had two meetings with a counselor at the Washoe County Innovations HS. She is recommending that Lauren have home hospital with the option to do work online. This is a new program that they are trying out for Lauren and one other student. We have a 504 planning meeting on Tuesday so I hope she can start back before Christmas break. Washoe County School District does not do anything quickly.
With all of the appointments and errands I've been running lately, I have been a little overwhelmed. I have a huge white board calendar in the kitchen and everything always goes in my iPhone calendar. If it doesn't, I will most definitely forget it. Last week was Tyler's 18th birthday. Oh my God, I blinked and my adolescent son was a young man. Jim's grandpa gave Tyler his car for his birthday (a 1994 Oldsmobile Cutlas - made the same year he was born) and we actually pulled off the surprise. I'll be taking him down to the DMV on Wednesday for his driving test. I still can't believe he is 18! We've been talking colleges and careers and it has really hit home what all this means. I am so proud of him and so excited for his future.
We had Liz, from Twig and Turtle over on Sunday to take pictures. We took a few of Lauren and I, then of the whole family, then just Lauren. Some we took out in the rain, splashing and laughing and having a blast -- actually FEELING the rain <3 She will send us the CD of the images once she is done with editing. I cannot wait! It's been a few years since we had a family portrait and I know Lauren is excited to see the ones of just her, smizing!
I received a message on Lauren's fan page from a fella named Manny. He is the founder of Gamerosity, a non-profit whose mission is to get iPad Minis for childhood cancer patients so that their time spent in hospitals getting chemo and feeling crummy at home in bed will be a little more fun. He asked if it was okay if they did a Facebook campaign for Lauren. We were honored that he thought of her and of course it was okay. In a few short days Team Lola's campaign was a success and Manny messaged me that the iPad was ordered and would arrive soon. How amazing is that? If everyone in the world was a caring as Manny --- but, you know, here is the kicker --- Manny is a childhood cancer survivor!
I do want to leave you with a link to a video, a video that rings all too close to home. "The Truth 365 is a ground-breaking, grass-roots documentary film and social media campaign that gives a voice to all children fighting all forms of cancer." Here is a link to their website. The documentary is almost an hour so I'd recommend maybe watching it when you have zero distractions. It's amazing and heartbreaking and I want the whole world to see it. Please share the link to the film on YouTube with your family and friends. We need to be the voice of our children.
I have so much more on my mind right now but can't seem to organize it. It's late. I will post another blog this week after I compose all of my thoughts.
Peace & <3
-cherri
Lauren started Doxil on Tuesday, November 27th. We had an awesome visitor (remember Clayton? His mom Danielle and sister Ellie came to visit. Clayton became an Angel on July 11th of this year) who took the edge off of port accessing and the first day of chemo. We stayed in the exam room for the beginning of her infusion because the infusion room was full, by a bunch of dudes! You'd think she'd want to be out there surrounded by guys, but not today. About 10 minutes into the infusion, the pump started going off (My fellow momcologists can relate -- the beeping is NO fun. Of course we know how to silence it. Hell, Lauren even knew how to get rid of the occlusions on the pumps in Oakland). About an hour and a half later, they finally decided to replace the tubing (which meant drawing out the Doxil with a syringe and putting it back in the reservoir). We were there for most of the day - an hour to exam and access, occlusion issues lasting almost two hours and then an hour or so for the actual infusion... As the boys started to go home, we decided to move out into the infusion room. It was stuffy in the exam room with the stupid pump beeping and a couple of nurses trying to fix it.
We have two major concerns with using Liposomal Doxil. The most important and scariest is the cardio toxicity. We are using Trental to help protect Lauren's heart, but according to long term stats, she could experience issues later in life, as an adult. The other concern is severe mucositis. Full blown mucositis in the mouth looks a lot like a horrible case of thrush. We want to keep this at bay mainly because now that Lauren has braces, the breakdown of the tissue in the mouth coupled with the braces may cause cuts/tears that will make her more susceptible to infection. All of the Anthracyclines are known for this and I'd say Lauren had about the worst it can get with the first protocol she was on. It doesn't just affect your mouth, but the entire digestive tract from beginning to end. It's a very common side effect in cancer treatment and the hardest to control. In fact, there really isn't any prevention like Zofran is to nausea. So far she is almost two weeks out from the infusion and has only mentioned some lingering "mucositis like" symptoms a few times. She also started the Etoposide the same week as the Doxil, except it's oral. This is the first oral chemo she has taken and lemme tell you, it's also the cheapest! I am giving it to her at night before she goes to bed so theoretically she sleeps through the worst of what could potentially be some icky nausea and vomiting. So far, she is tolerating it as well. I am trying to stay ahead of the waves of nausea but using Zofran and ginger tea. Her appetite is small and as of last week was dehydrated. A few bouts of dizziness and anemic type symptoms had me worried that she was low on red blood, but her skin's pink tint told me differently. Her hemoglobin was above 14 which made if very clear that she was dehydrated. Onc #1 ordered her to drink three liters of water a day (that's six 16.9 oz water bottles) or IV fluids at home/clinic. The very same day, after pushing her to drink and drink and drink summore' she finally started feeling better. She has also lost 4 lbs and her blood pressure was low. Other signs of dehydration. I've been pushing her (putting numbers 1-6 on the water bottle lids to keep track of what she is drinking) and she has been feeling much better.
You all know how much Lauren and I love Stupid Cancer. Well, we were invited to come on their weekly radio show on the 26th and I have to say it was really fun. My first blog post here was on the OMG2012 Cancer Summit for Young Adults. I am happy to report that I have been asked to be a panelist at OMG2013 on the Caregivers for Teens session and I am beyond excited. Lauren has already started making plans with friends she met last year for "after hours" activities. Here is the link to listen to the radio show.
I've also been dealing with the school situation for Lauren for a few weeks now. She has been enrolled in the re-engagement program here in Reno since September. This program is temporary until they find a place that suits you within the school district. It's really designed for dropouts as they help you earn back lost credits and try to get you "re-engaged" in high school and your education. She started the A+ program, which is online school with onsite tutors if you need them. For almost a month the classroom site was down and then I received a call from the director letting me know that they thought since Lauren wasn't coming in that she would do better with home hospital (a teacher comes to your house for five hours a week and you do curriculum from your zoned HS). Whatever. Honestly if it wasn't against the law, I'd say who cares and not even worry about school. It's very clear that she does not want to physically go back to her zoned HS. She wants to get her GED anyway. The unfortunate part is that because she has missed so much school, she is in no way ready to take the GED. At the very least, she'd need instruction/tutoring to prepare her to test. I finally had two meetings with a counselor at the Washoe County Innovations HS. She is recommending that Lauren have home hospital with the option to do work online. This is a new program that they are trying out for Lauren and one other student. We have a 504 planning meeting on Tuesday so I hope she can start back before Christmas break. Washoe County School District does not do anything quickly.
With all of the appointments and errands I've been running lately, I have been a little overwhelmed. I have a huge white board calendar in the kitchen and everything always goes in my iPhone calendar. If it doesn't, I will most definitely forget it. Last week was Tyler's 18th birthday. Oh my God, I blinked and my adolescent son was a young man. Jim's grandpa gave Tyler his car for his birthday (a 1994 Oldsmobile Cutlas - made the same year he was born) and we actually pulled off the surprise. I'll be taking him down to the DMV on Wednesday for his driving test. I still can't believe he is 18! We've been talking colleges and careers and it has really hit home what all this means. I am so proud of him and so excited for his future.
We had Liz, from Twig and Turtle over on Sunday to take pictures. We took a few of Lauren and I, then of the whole family, then just Lauren. Some we took out in the rain, splashing and laughing and having a blast -- actually FEELING the rain <3 She will send us the CD of the images once she is done with editing. I cannot wait! It's been a few years since we had a family portrait and I know Lauren is excited to see the ones of just her, smizing!
I received a message on Lauren's fan page from a fella named Manny. He is the founder of Gamerosity, a non-profit whose mission is to get iPad Minis for childhood cancer patients so that their time spent in hospitals getting chemo and feeling crummy at home in bed will be a little more fun. He asked if it was okay if they did a Facebook campaign for Lauren. We were honored that he thought of her and of course it was okay. In a few short days Team Lola's campaign was a success and Manny messaged me that the iPad was ordered and would arrive soon. How amazing is that? If everyone in the world was a caring as Manny --- but, you know, here is the kicker --- Manny is a childhood cancer survivor!
I do want to leave you with a link to a video, a video that rings all too close to home. "The Truth 365 is a ground-breaking, grass-roots documentary film and social media campaign that gives a voice to all children fighting all forms of cancer." Here is a link to their website. The documentary is almost an hour so I'd recommend maybe watching it when you have zero distractions. It's amazing and heartbreaking and I want the whole world to see it. Please share the link to the film on YouTube with your family and friends. We need to be the voice of our children.
I have so much more on my mind right now but can't seem to organize it. It's late. I will post another blog this week after I compose all of my thoughts.
Peace & <3
-cherri
Wednesday, November 21, 2012
Mystery solved...
I have noticed over the last two years that time seems to speed up the older you get. Where time used to drag on, a month can seem like only a week. I am sure I am speaking for everyone my age, remember when you couldn't wait to "grow up and move out"? What I wouldn't give to get those years back. I have NO regrets whatsoever, but there are many things I would do differently if given a second chance.
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.#thinkaboutit #donttakelifeforgranted". I could literally feel my heart breaking. I was semi prepared for Lauren to choose quality over quantity. It's one thing to lose a loved one tragically, but to lose them tragically as they die slowly is an unbearable thought. I asked her about it with tear soaked eyes. She replied "Mom, I have decided to do the chemo".
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.
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.
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.
Wednesday, October 10, 2012
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
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
Monday, October 1, 2012
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
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
Monday, September 17, 2012
Deep Into the Unknown We Go
I didn't realize until today that it has been over two weeks since I last blogged. Geez am I a slacker or what? Where to begin?
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
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
Thursday, August 30, 2012
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.
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.
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
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