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#SlagleStrong Needs Optune Device

$34,680 of $21,000 goal

Raised by 296 people in 6 months
My husband is 37 and he is dying.

Today is three-month anniversary of The Day the World Changed. 

On June 12, after having a headache for about a week, I took Nick, my always healthy husband, to the ER. I really wanted a CT scan, but I didn’t want the resulting mass it showed. The CT turned into an MRI which turned into an emergency transport to Springfield, MO. The neurosurgeon confirmed a nightmare: Nick had a massive brain tumor in his right frontal lobe, and it had to come out. 

We were sent home to spend a few days with our girls, while the hospital got the necessary equipment to remove the whopper of a tumor from my precious husband’s brain. We have four remarkable girls, ranging in age from 18 months to 13 years old. Nick told them that he had a brain tumor and had to have surgery. He handled it beautifully, as did the girls, but it was one of the most heartbreaking moments of my entire life.  The surgery on June 20 was a success. Most of the tumor was removed, and Nick has healed well from surgery. The tumor was sent to Mayo for a biopsy, and he was diagnosed with Anaplastic Astrocytoma, which is a grade III tumor. (I mentioned heartbreaking conversations- telling our children that their Daddy has terminal brain cancer tops the list for me.) This kind of cancer always recurs. There is no cure or remission. He has been treated as Glioblastoma, grade IV, with extended radiation and chemotherapy treatment plans. He has two days left of radiation and his first chemo cycle.

We have adjusted to our New Normal. What I cannot adjust to is the prognosis. At Nick’s two-week post-op appointment, we were told that 60% of patients with this type of cancer are still alive at five years, and 40% of that group are still alive at ten years. After that, there is not data. One of out every four AA3 patients mutate into glioblastoma, which has an 18-month prognosis.

Let me put this in perspective for you. This is what weighs on my heart.

In five years, our oldest will be starting her freshman year of college. In five years, our twins will be 15. In five years, our baby, little Lucy Kate, will be starting first grade. In five years, Nick and I will be 42.

I want my children to have years with him. I have seen the incredible father that he is to our older girls, and I want that for Lucy Kate. I see how the outline of his heart has shaped their daily lives- and I want his imprint on Lucy Kate’s future. I want him in Lucy Kate’s present. These precious, darling, intelligent girls of ours need their Daddy. They need him today and tomorrow and next year and in five years and in ten and beyond that. I want years with him. I desperately want to grow old with him. I want to proudly stand next to him as our daughters grow into the wonderful, Spirit-filled, courageous, young women that I know they will be. I want to hold his hand as we watch our girls walk across the stage at their high school and college graduations. I want to watch him walk his daughters down the aisle at their weddings. I want to see him hold his grandbabies the way he held his own. I know that none of us are guaranteed to have any of these days.  I wake up every day and am thankful for the best day of my life. Today is the best day because I wake up to five other people breathing in my home. Everyone is alive. Everyone is here. It won’t always be this way, so I can’t imagine anything better than it is right now.

I have faith in God’s Plan, and I always have. Our girls know that God is in control and that He holds their sweet Daddy in His hands every second, and we are a strong family because of our faith. As I look back on the last three months, He has cleared the trees from our path before I even knew they were there. You’d think that terminal brain cancer would be a forest in the road, but nope. All the trees were removed, and our path was cleared. God has known that this would be our road to travel long before either of us were even in each other’s lives. Hadley and I were talking yesterday (as she was bummed about a personal ten-year-old girl thing), and she said that God always has a plan. She said that maybe the whole reason God brought Mama and Daddy together to fall in love all those years ago was because Mama knew to listen to God when Daddy’s headache didn’t go away. She knew to listen to God when He said “NORTHWEST” in the car when she was headed to Mercy. One of the cleared trees in our path was the ER doctor at Northwest, Dr. Purcell. He listened to my request for a CT, and he also was able to get Nick to an excellent neurosurgeon at Cox, Dr. Spurgeon. She referred us to an excellent medical team at Highland, and we could not be more thankful. My eyes can’t see past the horizon, but God’s plan is perfect, and I am so thankful for a Mighty God that sees everything.

We have an opportunity to possibly keep our family together for longer. To give Nick more years. To allow my children’s father to be here and be present and raise them. To give Nick time to live. We are in the process of getting him qualified for a device called the Optune device. Optune is a device that Nick would wear on his head that will create wave-like electric fields to slow or stop the division of cancer cells. It has even shown to destroy some of them. This means that a tumor recurrence is far less likely for as long as he wears the Optune device. No tumor recurrence means extended quantity of life. This is incredible. There are glioblastoma patients who have lived for five years wearing the Optune device. This is remarkable new technology. The only downside? It rents for $21,000 A MONTH. We are working with insurance to see if they will cover it. We’re learning that generally they only cover GBM (grade IV) patients, but since it has been recommended by the medical team and it goes along with the rest of his treatment, we are praying that insurance will cover it.

When we first told people about Nick’s diagnosis in June, I was asked multiple times per day if we had a GoFundMe. When I said no, I was asked if I wanted one set up on our behalf. I always said that we didn’t need one, but that I was grateful for the concern and I would be sure to let someone know if we ever needed something like that. I have felt so overwhelmed with gratitude for the support and prayers we have received from our friends and our community, and it was really hard to imagine anything more. We honestly didn’t need anything else. I am working hard with our property management company, and Nick is doing everything he can from home. We don’t have outrageous expenses and live a very normal, reasonable life. Regardless of how hard we work, or the sacrifices made, there is no way we could increase our monthly income by an extra $21,000 a month in the next 40 days to cover the cost of this literal life saving device.

While I don’t like being in the position of asking for things, keeping my husband alive, if given the opportunity, is far more important than my pride. I will continue to work hard to provide for our family. I will continue to proudly stand beside my husband every step of the way. I will continue to have faith in our Mighty God. I will continue to ask for prayers from all of you. I will continue to be so proud of my husband, because Nick teaches me what being #SlagleStrong truly means. I will ask that if you feel led, you share and/or donate to our GoFundMe, so we can give Nick the best chance to spend more years showing us all how to be #SlagleStrong.
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I've been trying to write this update for several days, and it just comes out as mush. Bear with me.
Thank you. Thank each and every one of you. Thank you for reading our posts. Thank you for praying for Nick. Thank you for sharing my original GoFundMe post 840 times on Facebook (EIGHT HUNDRED AND FORTY TIMES, Y'ALL). Thank you for donating. Thank you for loving my family. Thank you for helping to give Nick a better chance at more time with his daughters.
I am overwhelmed with gratitude and love and all the sappy things, and I appreciate you all.
If you are reading this, thank you.
We are still waiting for a definite answer from Blue Cross. We received a letter stating that they have approved six months of coverage for the Optune, but not a guarantee of payment. Nick spoke with BCBS a couple of days ago in the hopes of getting an explanation of exactly what that meant. He was told that Blue Cross won't know how much they'll pay toward the Optune until they get a bill from Novocure (the company that makes the Optune device). It took me some time to process that, so let me break it down for you:
- Nick's private pay health insurance company, Blue Cross, will not disclose how much they will pay for the Optune device until they receive the bill for it, which will not happen until it has been on his head for an unknown amount of time.
- This is the same insurance company that has declined to pay for Nick's initial ICU stay after being transported to Cox in Springfield for emergency evaluation by the neurosurgeon. Blue Cross denied this ICU stay on the basis that preauthorization for this hospital stay was not received. Nick was pumped full of morphine in the ER and Ativan for his transport. Due to being in and out of consciousness, has no recollection of most of the day. I was doing my best to stay calm and drive alone to Springfield after just being told my husband had a large mass in his brain and needed to go to a larger regional hospital that could possibly do a biopsy that night. I was not allowed to see him in the Neuro ICU for an hour after I arrived at the hospital, and they never asked me for insurance information. I provided all documentation in Bentonville and I assumed that just like his medical information, his insurance information would travel with him as well. Looking back, I still don't know how I could have handled preauthorization differently. I am very thankful that we are able to afford insurance for Nick, but I share all of these details to hopefully explain my concerns about Blue Cross and their noncommittal response in regard to the Optune.
Back to the Optune... I have questions:
How much is covered? The Optune rents for $21,000 a month. That is a tremendous amount of money, and Novocure has already filed with BCBS- they know exactly how much it costs. I am confused why we have to wait until Nick has it on his head to know what BCBS will pay. That terrifies me, actually.
What is our portion? We have met and even exceeded our out of pocket maximum.
Why is the approval for only six months? The policy has no lifetime max stated in print.
We have asked BCBS and have not been given answers.
What I have learned, however, is that a glioblastoma diagnosis does make getting insurance approval for the Optune much easier. While Nick is treated as grade 4 glioblastoma, his official diagnosis on paper (which came from the microscopic analysis of the cells from the original tumor) is grade 3 anaplastic astrocytoma. To check any subsequent tumors for a diagnosis of GBM, including the tumor in the left frontal lobe, a biopsy is required. We are confident in his doctors, and Nick is being treated as aggressively as possible even without a grade 4 diagnosis.
Novocure has told Nick over the phone that they have an assistance program if BCBS declines to pay for the Optune. However, we would have an out of pocket amount to pay each month for the device. Nick has asked for the assistance program documentation in writing, but has not yet received anything. This is one more step in the process that hinges on Blue Cross making a decision.
I have had many people ask about increasing our GoFundMe goal or launching additional campaigns to help pay for future months with the Optune. With the insurance situation so unknown, I do not feel comfortable doing either of those things. I don't have a number. I just don't have a clue. Even doing this in the first place was incredibly difficult and humbling for me. My hope is that Nick is able to wear the Optune for sixty years, but I understand the reality of that in every way. While I don't feel like I can can raise our goal or start additional campaigns right now because honestly, I don't know what the future holds, I also don't want to shut the GoFundMe down. I have had several precious friends who have asked about making monthly donations, and maybe keeping it live and shareable is the right choice. I'm conflicted because I feel as though we have been blessed by so many. Blessed more than I can comprehend and more than we deserve. I have written about God clearing the path for us, and the great comfort I feel in knowing that He knows what we need long before we do. In this entire situation, this part is probably the most stressful, because it has forced me to be very vulnerable and ask for help (something I don't do well). I also struggle with feeling very inadequate in my ability to give proper thanks. I am still sending thank you notes, so don't give up on me if I haven't personally thanked you yet. Please know it hurts my heart that all I have to give back to you is a thank you. My prayer each day is that I am handling this in a way that glorifies Him, and I am so thankful for the prayers and support from each of you.
That's where we are right now.
I am hopeful.
I am overwhelmingly thankful.
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I am absolutely overwhelmed by the kindness and support we have received from friends, family, and strangers. Thank you all so much for helping us to meet our goal IN ONE DAY. The donations continue to come, which is just incredible, and honestly, I am having such a hard time finding the right words. Not only have you paid for Nick's first month with the Optune as we continue to battle with insurance for this life extending device, you are helping us pay for future months with each donation. I am absolutely blown away. From the bottom of my heart, thank you.
From Nick via Facebook, 9/14/2018:

Since July 31, 2018:
33 Radiation Therapy treatments done.
46 Temozolomide Capsules (chemotherapy) swallowed.

Round 1 of permanent cancer treatment is finished. It's an emotional day. I know I have this cancer that has no cure growing in my brain. The goal of every treatment is to slow or stop the division of the cancer cells. They multiply exponentially as they divide. One becomes two becomes 4 becomes 8 and so on. I am tired but want to continue treatment. I know cancer cells continue to divide when they are not treated, and so it makes me anxious to stop treatment. Clinical trials have shown that the treatment plan my doctors have created gives the longest survival time.
So…
It's time to let my body recover for a little while with a 5-week break.
On October 22, Temozolomide will begin again for 5 days at a significantly higher dose. So far, my body has handled the Chemo drug with manageable side effects. The increased dose leaves a little to the unknown. We are hopeful that my body will continue to be strong enough to take the abuse. Then 3 weeks rest. Then 5 days with 3 weeks rest cycle repeating for 12 months. 13 more Chemo rounds if my understanding is correct (52 weeks ÷ 4-week cycles).
AND…
THANKS to the generosity of so many who have chosen to donate or share Lindsey Slagle GoFundMe…
I will have the privilege of at least one month using the Optune Device. Science has proven that Optune stops or significantly slows the division of cancer cells in the brain. In some cases, it even kills the cancer cells! I'll put a link in the first comment to an explanation video on YouTube.
Words cannot express how grateful my family and I are for the support both emotionally and now financially from so many people. We are truly blessed by you all. THANK YOU!
#slaglestrong
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$34,680 of $21,000 goal

Raised by 296 people in 6 months
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