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.
- Emilee Helmuth
- Les and Vicky Garrett
- Emilee Helmuth
- Leslye Morse
- Emilee Helmuth
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