What She Wouldn't Give to be DONE. But, here we are.
Updated: Dec 10, 2020
Momcology...there is even a page for this! This is real. What we wouldn’t do for these precious children.
Starting in my late 20’s I found interest in health centered podcasts from the likes of Shawn Stevenson (The Model Health Show), Chalene Johnson (The Chalene Show), The Doctor’s Farmacy, Dr. Ruscio Radio, and some others. My drive to work would be filled with this knowledge. Knowledge and application, 2 very different things but I soaked in their mentality. Interestingly enough, I thought the information I was listening to would end up being for me. Selfishly grabbing the information at an attempt to prolong a life which has the possibility of being doomed by heart disease. Heart disease is what plagues my family. My mother passed early from a massive heart attack and her father did the same along with other family members who took on different but related scenarios.
This to say, we never truly know the reasoning for our interest. Never would I have imagined this knowledge would open my mind to possibilities for my child who would battle cancer. You see, this journey does not provide a yellow brick road. As much as some doctor’s would have you believe. They lay out a path that has worked for the majority and, is therefore, approved by insurance. But, my child, ohhhhhh my child is not the majority.
Brynn’s cancer remains. Barely, but it’s there lurking around and waiting for it’s opportunity. The typical scenario didn’t work for her. The original plan with starter chemo’s and the option of radiation didn’t quite get it all. Why?! Why can this just not be a simple open and close survivor story? Why must she jump through hoops to have this life on Earth? I don’t have the answer to these questions. However, I do have beliefs that allow me to grab ahold of the message and deliver this message of what I witness through her journey. I’m not mad or upset or question this process. I open my eyes and my ears and take on information and process it how it fits best with what’s being presented at the time. One step at at time. One day at time.
Brynn’s not done. She’s still fighting. My girl, who makes this look so easy (the Catch 22 this can be) has more in store for her. I hate this. Those who know me, hate is not a word that often comes from my mouth but it’s super fair to use right now. I HATE this for ANY child but ESPECIALLY my girl. So, I use the word hate! I allow this to fuel me. I read, I listen, I lean on those who come before me and have battled this beast. I take this information and I pray. I give it to God. I allow myself to be led by Him and this information and I care for the child He trusted me to bring into this world. Fully aware the Lord knows what’s going on and how this will ultimately play out. All of this to say, He has been with our family the entire time. Laying things out before us and winking when we need it. Yes, we God wink here.
I know some who follow Brynn's journey happen to have their own beliefs and I'm not here to change those beliefs. I accept good vibes and well wishes too. We are all different. Our backgrounds and experiences bring us to different life paths and life choices. Know that I am one of those people who is willing to listen to those experiences in a judgement free arena and appreciate you for who you are. I have always been this way. Now, my path just happens to be one where I have learned time and again to lean on the Lord. Without Him, this Mom would have lost her mind long ago. I don't have a hard life. I have a beautiful life. This is just my belief. Back to Brynn...
Doctors are only human. They are only a group of like minds with a great education coming together to discuss my daughters fate. Keywords there...like minds. Some of the best minds! But, they all think fairly similarly when it comes to Ewing Sarcoma or even cancer. Perfect. We need that. But, I am also one who tries to have an open mind. I listen to podcasts about health after all. When Brynn started chemotherapy, I had a difficult time when we were told to just stick to their plan. The doctors depleting my strong, athletic, tough minded child of everything her body had to offer her and then not allowing me to build her back up. 🤯...🤬 that! There has got to be more to this. And...there is.
Every child comes this world a different person from the next. The human body is complex. Oh boy is it! Things that would work for the “masses” would cause an allergic reaction for Brynn. As a mom, my mind kept going, there’s got to be a better way! We’re playing a damn guessing game with “what works for most.” How?! With all the science and information out there, why are we using the same protocol for children who react differently? When I was told the year my child spent on the “first line” treatment didn’t work, I immediately know why. She’s not the “typical” case! How do I find out where she’s different so the approach can be different? Well, honestly, testing I already had knowledge of but just didn’t make time to get it done. Testing that is not approved in the US. Testing that is still research. Guess what...it’s all research at some point before the decision makers say it is so.
I do not like breaking rules. I like playing by them. I know these rules are there for a reason. I am also heavy on common sense. When something is a rule just to be a rule, nope. Not a fan. If my common sense brain can’t wrap around the rule, I want to know why. In the medical world, the why is sometimes politics and money. “We’re just not there yet.” Well! Get 👏🏻 there 👏🏻. This is my child.
I have information to understand her body better. This is science. This is not some willy nilly fruition coming to me in the middle of the night. Why couldn’t I use the science if it means understanding her cancer better? Cancer cells are so complex! There are many different types of cancer. It can become a rabbit hole of information. But, when we go to defeat opponents, aren’t we first trying to understand them? Isn’t the best fighting chance knowing who we’re going up against? Why do we not do this with cancer? The medical community puts patients into a box. Classified into these boxes because it’s easier. I understand that not every person can be analyzed to the inth degree but my child will be. By me. I am not a genius. I do not come with the education these doctors worked extremely hard to get but I can be a great partner. I can work with them. I can seek out things to bring to them and ask them about to expand what's inside this particular box. So, I did.
When we were told Brynn never really got rid of this cancer, I looked up information on RGCC testing. Upfront, there’s not much that makes sense and it seems super vague compared to what we actually learned from it. In Texas, as of today, there are only 3 doctors certified to do this blood test. Also, it’s not guaranteed the oncology community will accept this information and there are a slew of reasons the medical community can give you for this lack of acceptance. All of which can make sense. However, I won’t be stopped. I want to know and understand more about my child. I want to set her up for success in any scenario. Life or cancer.
We drive to Houston, meet this wonderful doctor and learn a different perspective on care. Oh how I love hearing two sides of the same coin. The doctors Brynn goes to see are all MD’s. Their paths led them down very different roads. I have always been more attracted to the holistic approach. My common sense doesn’t like the side effect journey and piling on more and more just to rid myself of the occasional migraine. Personally, my body never reacted well to the prescription route anyhow. Go figure I now have a child who does the same. Do not get me wrong, I find value in both sides of this coin. In my opinion, the two could be married. It’s a lot more schooling, that’s for sure!
The test comes back really quickly much to all of our surprise. Yay! Now to interpret the details. The doctor goes over the information and I am enlightened! I found this fascinating. The test isolates her cancer cells and performs a variety of testing on those cells to be able to tell us how these cells specifically react to many different scenarios and therapies. Here is how I explained the synopsis to Brynn...her cancer cells are as smart, creative and as stubborn as she is. The protein protecting the stem cell of her cancer cells is stubborn! This cancer has survived the harshest route of chemotherapy. Fortunately, we also see her circulating cancer cell number is low but still existent. We also see there is very little option as far as chemotherapy that will work on killing these cells. The relapse treatment she’s placed on (irotecan and temozolomide) proved to be the least effective at killing her cancer cells. I have my child undergoing a treatment that is making her absolutely miserable for nothing. What would you do?
That’s right! I start talking with the Brynn's oncology nurse. She calls me for another topic and I bring up this test! A test she had never heard of and now has to tell our (wonderful) oncologist that I’m changing the game.
As a mother in the medical world, I feel small. I come with very little knowledge of the human body and the knowledge I have goes against what they’re taught. It’s not a degree (but very well could be by the time it’s all said and done). I don’t have a document on my wall stating I went through several years of schooling and years upon years of conferences invested to save the lives of others. But, what I do know is the information I have isn’t useless.
Have I mentioned how wonderful our oncologist is? He has been perfect for this family since day one. He’s the kindest soul and smart. Gosh he is smart! He will spend his weekends researching all the options for Brynn. For her. Now, will this help his other patients, of course! But he has always listened and been open when he can. Sometimes I’m a bit off the mark and he will take the time to explain why. So much value in that.
I present this testing to our wonderful oncologist who spends his weekend researching this information. Mind you, I have also said, no more of what we’re doing. It’s not beneficial and she’s miserable. There’s another way. If I can’t explain the benefits to her in order to keep the motivation up, I won’t be able to bring her here...physically. She will fight me. It’s her body too. She has been an active participant in ALL of these conversations since day 1. She’s no fool. She is smart! She asks all the right questions. I would be the fool to exclude her just because she’s a child.
Ok, back to the topic...he researches and finds some value. Of course, with disclosures and with telling me the test isn’t really something other than research and all the legal mentions required but, he sees something in this testing he’s willing to present to the tumor board for discussion. With that, she has started a new treatment option. A combination which showed to be one of the effective options "in a Petri dish". How it will react within her body is a story for another day because we have just begun. This new option is a combination of Gemcitabine and Docetaxel. She started the Gemcitabine on 11.24.2020 with very little side effects. We will do the combination tomorrow. I can keep you posted on those side effects.
There are options out there. There are different avenues that can be explored. Every person is different. Every life path is different. Every message and intent is different. The only point I care to hit home is, you were meant for the child you were given. You are the perfect combination for the life meant on this earth. No matter the road you choose. It’s for a purpose, a reason. We are all called differently. The experiences we have, the crossroads we face and the decisions we choose to make are just how they are meant to be. As parents we all do the very best with what we are given. There is such a fine balance to life. Do I have all the information and tools and do I know all of the things to make this right? Will I be able to save this life that was entrusted to me? No. I will not. Because that is not for me. She is already saved. No matter the outcome, to know her is to know her heart. She is already saved. She is already in the hands of our God.