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Ilya's Portrait | Neurofibromatosis Type II (NF2) Story of Hope, Part 2, Brain Surgery

As we’ve gotten to know Ilya and his dad, Todd, we’ve been impacted by their deep and genuine hope and transparency in dealing with the unexpected difficulties of life. We recently had the honor of sitting down with them to get the latest updates on how life with neurofibromatosis type II is going. Their story is truly an inspiration. You can read part one of their story here.

Complications with Neurofibromatosis Type II

Nearly three years ago, Ilya was diagnosed with neurofibromatosis type II, or NF2, which causes non-cancerous tumors to grow throughout his nervous system. Early on, he and his dad, Todd, wrestled with the different NF2 treatment options and decided to carefully monitor the growth of the current tumors and treat specific challenge areas as they come up.

In mid 2016, Todd and Ilya took what they thought was a routine trip to Massachusetts General Hospital, where Ilya is seen by a top NF2 specialist, to check on the tumors. What they discovered shocked them both –– Ilya’s doctor recommended brain surgery to remove one particularly troublesome tumor that had started putting pressure on the brain stem.

The prospect of brain surgery was a brutal reality for Todd and Ilya to take in.

They took time to process the decisions that lay in front of them and soon put a surgery date on the calendar. As the seasons changed, though, Ilya began having seizures, which brought an added level of urgency to the impending procedure.

Todd was overseas for business during those first seizures, which he describes as “terrifying.” Being on the other side of the globe with no ability to quickly hop on a plane to come home sent him straight to a local church where he spent hours praying for his son.

Back at home with his grandmother, Ilya was shaken by the seizures, which left him injured, confused, and with some short-term memory loss.

Brain Surgery to Remove the Tumor

Todd, an incredible advocate for his son, was able to get the date moved up, and on December 7, 2016, Ilya underwent surgery to have the tumor removed. The surgery lasted for over 14 hours, with a total of 10 doctors and 15 nurses present. Finally, after 18 hours, Todd was able to catch a glimpse of Ilya as he was wheeled into the Neuro Intensive Care Unit (Neuro-ICU), a moment Todd will never forget.

The good news was a relief: the doctor was able to remove 99 percent of the tumor. But they would discover over the coming hours and days how much the length of the surgery had taken its toll.

As the nurses and doctors evaluated Ilya in recovery, the first thing they noticed was stridor, high pitched breathing and a sign that his airway wasn’t clear. They learned that his vocal cords weren’t moving enough to allow him to breathe properly, and the medical team decided to re-intubate (re-insert the breathing tube) and keep Ilya heavily sedated for the next few days to give his partially-paralyzed vocal cords time to rest. Over the subsequent days, the nurses and doctors would briefly rouse him every couple of hours to check for brain function.

Todd with Ilya after brain surgery | Neurofibromatosis Type II (NF2) Story of Hope, Part 2

It was a long five days that Ilya spent uncomfortably and mostly in a fog, while Todd continued to pray and hope for his son. Ilya remembers the final removal of the breathing tube being the greatest relief, and a weight lifted off Todd as he learned that Ilya would be able to breathe on his own.

What was supposed to be three or four days in the hospital for recovery turned into 24 days with more complications (like port problems that resulted in atrial fibrillation, or afib) and a transition to a rehabilitation facility.

Finally, Todd and Ilya made it home on New Year’s Eve.

With continued rehab work a couple of days a week, Ilya moved from wheelchair to walker to cane, and before long he was walking without assistance.

The Next Challenge with NF2

With a successful brain surgery and recovery behind him, Ilya was ready to focus his attention on a strong finish to his senior year of high school. But in February, Ilya began experiencing serious leg pain that was traced back to another tumor. In addition to the leg pain, he began experiencing intermittent episodes of troubled swallowing and breathing.

With another trip to Mass General to evaluate the situation, they decided to try a nerve block medication in an effort to delay the need for surgery. But when they realized that the tumor was beginning to cause serious damage, they were left with one option –– surgery.

Ilya’s surgery to address these concerns is scheduled for April 25, and he is optimistic and determined to recover quickly so he can accept his diploma in person.

Processing Emotions with a Chronic Disease

As we talked through the happenings over the last few months, including many worse-than-expected moments, we asked how Ilya and Todd were processing through the emotions and events.

Ilya was eager to share these words, which he explained have been reassuring to him in the uncertain circumstances:

“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”
Romans 5:1-5

Ilya described how these words have impacted him, “For me, it says, ‘You’re not alone, and something good is going to come out of this.’ Obviously you’re not going to see it at the time, and it may take years before you start seeing it, but God has a plan that is going to be good.”

Todd also weighed-in on the burdens of the last year, admitting that there are still times when they both deal with sadness, fear, and anger. But he has drawn comfort in remembering that these emotions are human and something that God is intimately familiar with. He pointed us to a passage in Job:

“Behold, I go forward, but he is not there,
and backward, but I do not perceive him;
on the left hand when he is working, I do not behold him;
he turns to the right hand, but I do not see him.
But he knows the way that I take;
when he has tried me, I shall come out as gold.”
Job 23:8-10

In the pain and difficulty, Todd explained to us that he knows that God is in the middle of it, even when emotions are raw. He elaborated further:

“In Job 23, he’s right in the middle of everything. He has this faith that even though he can’t see God, that God knows his path. Although Job was mad, he never quit believing in God. It’s just beautiful. Job was likely the earliest written book of the Bible. It’s almost as if this is the first thing God’s telling us, almost the first thing that God gave us.

I take comfort that God knows our path, too. Life gets really bad sometimes, and you’re not always going to understand it. At one point I thought this was going to wrap up neatly like a story in a movie. That’s just not the way life is. Life is more like a song. It goes on and leaves you with something. It’s a shaping experience.

It’s easy to not think about brokenness and draw into something to make your world really small, to not know the suffering that’s around you. It’s tough, but it’s a growing experience as well that has forced some tough conversations. We’ve had to prune away some things that just aren’t worth getting upset about.”

I love the way that Todd and Ilya have both agreed that it’s okay to be mad or down or just go to watch a movie and be silly. They also have committed to openly sharing with each other and giving space when needed or allowing time to simply zone out. They’ve approached their challenges as a team, and the strength of their relationship and commitment to each other, and their faith shows.

Turning to the Future

As we dialogued about the events of the last few months, we also asked Ilya about what he thinks about and sees for the future. To hear him unpack his hopes and dreams with no hindrance from the NF2 diagnosis is truly inspiring.

Ilya is excited about moving, going off to Gordon College, and pursuing a career where he can have an impact on others. And it’s clear that he is more focused on the opportunity ahead than the potential challenges:

“I don’t think about NF holding me back. That never crosses my mind because I know that [my dad] is always going to be there for me, God’s always going to be there, and there’s always going to be a way through it. So I don’t let it be a question of ‘what if’ when I think about the future. No matter what, God’s going to be there, dad’s going to be there, and there’s always going to be hope.”

About Ilya poster at hospital | Neurofibromatosis Type II (NF2) Story of Hope, Part 2, Brain Surgery

Wrapping up our time together, we asked Todd to share what he sees when he looks at his son navigating through life. Todd’s love and admiration for his son is apparent:

“I think of courage and the incredible blessing that [Ilya] is. God put us together. There’s so much that I would have lost, and I wouldn’t be the man that I am or want to be. Right now we’re going through challenges, but I think about the future for him. Courage, the blessing of where we’ve come, and the future of how this will shape him. Physically there are a lot of challenges that come with NF, and we don’t know where that leads us, but I’m excited about his future, I really am.”

We love Todd and Ilya’s optimism and the immense courage that they have both shown in facing NF2 with hope. Will you join us as we pray for the upcoming surgery and beyond?

Ilya expressed immense gratitude for the support he has received from the Cornerstone Preparatory Academy administration, counselor, and campus pastor. They have encouraged him to focus on his health while recognizing the ways that he’s learning and growing through these experiences. He and Todd also made a point to mention the strength and encouragement that they’ve received from the many hand-written notes they’ve received.

If you’d like more of the background on the discovery of the diagnosis, read part one of Ilya’s story with neurofibromatosis type II.

Showing 2 comments
  • Bob Lane
    Reply

    Hello,

    My name is Bob and my 3 year old granddaughter has recently been diagnosed with NF2. As you can imagine, our whole family is in shock and really worried about Katie’s future. She has a tumor on her right optic nerve and has lost sight in her right eye. Very small tumor has begun on her left auditory nerve. Thank you so much for sharing your story and may God continue to bless you. We are reading and searching for as much information as we can get yours was really helpful.

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  • […] Update: Since publishing this story, Ilya and Todd shared an update with us that includes treatment decisions for NF2, brain surgery, and how they’re processing the emotions of a chronic disease. Read more here: “Neurofibromatosis Type II: Ilya’s Story of Hope [Part 2]”. […]

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