This little light of mine…

Hello my blog-reading friends! It’s me, Cody. I got used to having my time at night after Lindsay had went to bed to update the blog and as soon as Mr. Bentley got here, it makes getting that time at night very difficult. Both because we are tired and want to take advantage of uninterrupted sleep and because it’s hard to find time to blog when there is so much to do around the house. Either way, it has been too long since I’ve last posted on here and I figure it’s about time we update you all on our most current state. After all, that’s what we created this blog for, right? 🙂 Warning: this will be a pretty medical terminology heavy blog post so if you’re not interested reading all that, jump down past the descriptions of our choices to move forward and start there.

So Linds left off after we had met with our oncologist in Peoria and we were scheduled for a second and third opinion in Chicago with various doctors. That seems like such a lifetime ago in my mind, it’s crazy! Our oncologist in Peoria had left us with a very awful taste in our mouths. As Lindsay had said, he basically told us he felt as though this was ‘incurable’ at this point and that he was going to recommend the 6 drug chemo regimen but that it would be very harsh and he didn’t know if it made sense. Essentially he took any confidence we had in him and threw it right out the window. I’m not going to continue to drag his name through the mud but I’ll just leave it that we were incredibly upset at what appeared to be a lack of preparedness and confidence in him. If I’m being totally honest, we left there that day without wanting to return to him or that facility.

He set us up with a doctor at the University of Chicago Medical Center named Dr. Gini Fleming. After some research, Dr. Fleming appeared to be “the best of the best” when it came to lung cancers and other various small cell cancers, such as Lindsay’s. If you remember from way back in our earlier postings, Lindsay’s type of cancer (small cell carcinoma of the ovary, SCCO for short) is very, very similar in structure to lung cancer cells so Dr. Flemings professional opinion and insight obviously was held in very high regard in our minds and minds of scholars around the country. She came in and immediately established herself as a very personable, confident doctor who had a calming demeanor about her. She spoke to us about what she had read about our scans, noting that she hadn’t been able to see our imaging yet due to the short timeframe between meeting with her and Dr. Ladanyi in Peoria, I think there was only 3-4 days between. Her opinion was to look into what they call ‘second line chemo agents’ as well as any clinical trials that they may have open for us. She, too, had noted that the outlook to be able to cure this was grim but she seemed to be willing to try anything it took to give us our shot. She left briefly, saying she had to grab some paperwork on a trial that had just opened that day and came back with a stack of papers. The drug in the trial was Nivolumab (Opdivo) which you may have started to see commercials for on TV just recently, combined with completely new-to-trial drug called anti-LAG3.

Nivolumab (Opdivo) is an immunotherapy drug, meaning it is not a chemo agent and is not a ‘toxin’ so to speak. It’s a drug that turns your own immune system into a cancer-fighting team of ninjas (err…cells). Medically speaking, it’s an anti-PD-1 drug which blocks the PD-1 protein from taking effect on your T-Cells. Simplifying that down, it basically prevents your body from killing off it’s immune system’s cells. It’s like immune system steroids, allowing your body to work overtime against the cancer.

Anti-LAG3 is a similar drug to Nivolumab, but instead of inhibiting the PD-1 protein, it works against the LAG3 proteing. The advantage of anti-LAG3 over Nivolumab is it is both a activator of T cells as well as a suppressor of Treg cells. Treg cells are basically modulating cells that kill off the effector, or working, T cells. Think of this as a fullback or offensive lineman, clearing the way for its running back, Nivolumab. 🙂 This is not FDA approved yet and is in phase 1 of clinical trials, to date, it’s only been tested on mice but has shown very promising results.

The good: no chemo side effects and no more toxic cocktails. The bad: It still totally wipes you out due to the intense battle it provokes inside your body and isn’t consistently effective in everyone. Granted, neither is chemo, but we would be running the risk of not using chemicals/toxins to do more ‘harsh’ battling inside–but we had our eye on Nivolumab many weeks prior to this day. In fact, there are 3-4 people on the Yahoo forums/groups that we frequent for SCCO that are using it with good success. The most successful story comes from a woman who is overseas and supplementing the Nivolumab along with some other immunotherapy drugs and some disease fighting viruses such as Newcastle Disease Virus. Anyway we signed the paperwork and received word the next day that we were accepted into the trial!!

Our future was set and we had our plan of attack, right? Wrong. We met with our oncologist a few days later because he wanted to discuss everything that he had seen/read as well as what Dr. Fleming had said to us. I am a firm believer that everyone deserves a second chance and so we begrudgingly went to Peoria to meet with him. At this meeting he came in and wanted to talk to us about the scans. He said he had gone over the imaging ‘slide-by-slide’ with his best radiologist and they both concluded that the chemo regimen we were on before (Cisplatin and Etoposide) had “measureable effect” on the cancerous nodules that showed up on the imaging. What’s that mean? Good question…that was what came out of our mouths after he divulged this information. He went on to show some confidence in his imaging study combined with his research and Dr. Fleming’s recommendations and said he thought that using a platinum-based chemo agent was in our best interest because with cancer you never want to turn away from something that is showing even moderate success in your treatment. Needless to say, his confidence and better personability restored some of the confidence we had in him.

It’s at this point that I need to discuss another drug that we discovered ourselves via a Yahoo group for SCCO fighters before you get super confused.

Tazemetostat is a molecule inhibiting (EZH2) chemotherapy drug that is specifically synthesized for the type of tumors that mutate from Lindsay’s gene-expression. Medically speaking, this trial is for INI-1 deficient tumors or tumors mutated from the SMARCA4 gene; the latter is what applies to Lindsay. There are many trial sites to open between now and the end of 2016 but the furthest along in the country with getting the necessary board approvals to be able to start the trial is the Children’s Hospital of Cincinnati under the direction of Dr. Joseph Pressey.

So, we left Peoria with a more clouded future than we were at before. When we left the first time we had basically 1 option and a grim outlook. Now we had 3 options and all three had at least some promise to them. It was still a very steep uphill battle but all three had their benefit.

Choice 1 – Stick with the trial in Chicago that we were already in and hope for the best with an immunotherapy drug and another drug that has never before been studied in humans.

Choice 2 – Stick with what is working; platinum based chemotherapy. This means either the 6 drug chemo regimen that Dr. Ladanyi had suggested or possibly just the 2 drug (Cisplatin/Etoposide) treatment we did before. We knew this was having measurable effect but it was very toxic and difficult on Lindsay, I and surely Bentley. The 6 drug regimen was more or less ruled out immediately because it’d be 2 day inpatient treatment prefaced by 1 day outpatient every 3 weeks. 6-7 hours outpatient chemo on day one, 24 hours inpatient chemo on day two and 3-4 hours inpatient chemo on day three. As you would guess, this would be very hard to do with a newborn and obviously incredibly intimidating and frankly scary for us to attempt as we didn’t know the side effects nor how long they’d linger after treatment. We feared it would basically never allow her body to even slightly recover from treatment; making for a very difficult situation with treatment and home life/quality of life.

Choice 3 – Shoot for the Tazemetostat trial in Cincinnati while doing platinum based chemo in the interim. This trial is scheduled to start “middle to end of November” according to Dr. Pressey. This was the most risky, as we are essentially choosing choice 2, and hoping we can get into the Cincinnati trial while turning our back on the Chicago trial.

To sum up, we cannot choose the Chicago trial and then move to the Cincinnati trial because of the half-life of the Chicago immunotherapy drug. Even if we only did one round of the immunotherapy, we’d still be forced to wait until right around Christmas to be able to start the Tazemetostat trial, as we have to be off Nivoloumab for 60-80 days. Therefore it was choose EITHER choice 1 OR choice 3, we couldn’t have our cake and eat it.

Possible decisions:

Choice 1

Choice 2

Choice 2 for a few round then Choice 3

Are you confused yet? Yeah…imagine how we felt. We were so emotionally, mentally and phyically exhausted from all the choices, lack of sleep and research that needed done to decide what made the most sense for us. After a lot of debate and the opinion of our medical staff, we decided that Tazemetostat was our best bet for treatment and that we would do platinum based chemo in the interim until the trial opened. Finally, we had our plan and we could move forward.

As Lindsay had mentioned before, when we first got the news from the scans we were back at square one. We didn’t remember how we got past those first few seconds, minutes, hours and days. Nothing seemed to matter anymore besides our family and working on solving this medical conundrum we were in. Every little thing seemed to be non-existent and we naturally began to “shell up” again, blocking out our support system and even our faith. Just when we started to learn to “let go” of everything and know that it’s all in His hands, we got this devestating news. I remember hearing the words incurable seemingly fall from Dr. Ladanyi’s mouth and instantly getting mentally hit in the head by a Mack truck. I could hear my heart beat as it beat faster, presumably from the adrenaline. My mouth got dry and I wanted to just scream but it was like my body wouldn’t let me. I kept replaying that word over and over in my head, trying to make sense of it, trying to make sense of how I could find a cure. I knew I couldn’t realistically find a “cure” for cancer but I knew that I immediately needed to research the best I could so we could make a well-informed decision. So instead of screaming and running for home, I sat there. I sat there and looked down at the floor tiles in the office, replaying what he had said over and over again in my head. He got done talking and asked if we had questions before we got up to leave. I still think there are fragments of my heart, mind and soul on that floor in Exam Room 4, floor 2 of the Gynecological Oncology suite at Peoria Cancer Care. Large pieces of me were ripped out fo me that day but I knew that life had to go on and that I had the only person I wanted to go through it with right there along side me. Lindsay and I retreated to the car with her mom, Deb, and we drove home in mostly silence.

After we got home, I started in on my research and we actually recommended the Tazemetostat trial to our doctors, to which they obliged and gave us their professional backing on it as well. We chose choice 2 until the Tazemetostat trial (choice 3) opened up. All this is proof that no matter how bad life gets, no matter how bleak  your future looks or how insurmountable the present may seem, life does go on, ONE STEP AT A TIME.

I know most of you reading this are my Facebook friend and I posted an article on my Facebook page the other day of a beautiful four year old singing “I’m gonna love you through it” by Martina McBride to her mother who is a stage 4 cancer fighter that was filmed on Ellen. It shook me to my core watching the sweet, innocent and completely enlightened four year old sing the beautiful words of the song to her sobbing mother. I lost it, tears were flowing and I almost started to hyperventilate trying to stop the breathing/tears. The message in the lyrics and in the very analogy of this young girl singing to her mother was one of the most beautiful messages in life. The message of the song, paraphrasing of course, is that a woman of 38 years who has 3 children was diagnosed with cancer and she is scared, mad, depressed, anxious, sick and exhausted but her caretaker continues to surround her and conceal her with his/her love. They continue to love her through her struggles, no matter how hard it gets, always being that positive influence and light in their life. Such a powerful message.

After all, that’s what God and religion really are for us all, right? It’s that light, that hope and  that rock that get us through our daily struggles. God doesn’t care how you feel, doesn’t care how low you get, doesn’t care how angry you might be at him…he loves you unconditionally and without waver through it all. That’s my mission now, that’s what I can do to help Lindsay fight through this. A four year old had it all figured out. Her innocense allowed her to see without a clouded view of the world or love. She was selflessly, passionately, exuberantly and relentlessly supporting her Mom and giving her something to fight for.

So, until next time I write on here, that’s what I’m going to continue to do. I am here to be my family’s rock, their beacon of hope, their happiness in sadness, their steadiness in times of turmoil, their shepard when they feel lost. That’s what I’m here for right now in this moment and it’s a beautiful thing to feel that clarity. I will be their light in this time of darkness. God and faith continue to test us and He isn’t making this road an easy one, that’s for sure. Despite that, I know that faith is the way to get through these times of struggle and we’re working to get back to that harder than ever.

Let us all stop walking in the darkness alone. There is way too many beautiful things in life to walk through it in darkness, whether you’re scared, tired, depressed, unhappy, feel alone, unmotivated or unfulfilled. YOU get to choose the way you see life each day. How beautiful is that? We, the free American people and free-willed, get to wake up each and every day and choose how we approach our day, mentally. Stop choosing darkness. Choose to be that beacon of light for the world. You never know how far being polite, casting a smile to an unsuspecting stranger or being selfless can impact the world. As I was writing this, and as the clarity came I was reminded of a familiar children’s song that we all know, I’m sure.

“This little light of mine,

I’m gonna let it shine.

This little light of mine,

I’m gonna let it shine.

This little light of mine,

I’m gonna let it shine.

Let it shine.

Let it shine.

Let it shine.”

2 thoughts on “This little light of mine…

  1. Keep the fight in you Linds!! P.S. Cody, sounds like you should have went into pharmacy — you make your cousin proud. You are a wonderful advocate for Linds and you work together as a great team!! 🙂


  2. Cody…what a blog of Love. I love your line about the 4 year old had it figured out. Love unconditionally, bottom line. You, Lindsay and Bentley are being uplifted in prayer along with your families.


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