Welcome Friends, Family & ardent Prayer Warriors! Nick and I are excited to launch Ocean of Trust. The purpose of this website is twofold, first, to quickly and efficiently provide regular updates and second, to humbly ask your support.
Looking back over this past year, life has dramatically changed. Our situation is ever-changing and with my load increasing, it has been very difficult to update the masses. I’m afraid my update will come as quite a shock to many of you. For that I apologize. We are grateful to our friends, the Hovers, for creating this forum for us.
Nick was diagnosed with a brain tumor in 2006, just after his 27th birthday. We are now almost 13 years into this journey and are grateful that you are here with us. Many of you have been praying with and for us from the beginning, always faithful, keeping him on those prayer chains even when things were stable. Since 2006, Nick has undergone 2 biopsies, 1 craniotomy, motor mapping of the brain, implantation of a VNS device to control seizures, 5 cumulative years of chemotherapy and 2 complete cycles of radiation. We have experienced infertility, pregnancy & 2 adoptions. It’s been quite a ride!
Spring of 2017 we welcomed our youngest son, Andrew Paul, into the world through the gift of adoption. Meanwhile, the MRI showed the margins of Nick’s tumor beginning to expand. In consultation with our team of doctors from two local hospitals, we decided to take the recommendation of re-radiating the tumor. Nick had a small amount remaining of his “lifetime dose,” so that was stretched out and administered across six weeks. Radiation concluded around Labor Day 2017.
The location of the tumor is “high value real estate” as the doctors like to explain. It is situated between the sensory and motor strip and adjacent to the area controlling speech. In 2006 they were able to remove almost all of the tumor. A game time decision was made to take everything except what was touching the motor strip because it would lead to paralyzation. 90% of the tumor was removed. Nick experienced a loss of sensation on his right side, particularly in his hand. But we could live with that, even if it meant never playing the piano again. So since then we have been dealing with the remaining 10% of the tumor that is touching the motor strip. Because of its location it is inoperable. This particular type of tumor tends to continually reassert itself, and that is certainly true of our experience.
After the second round of radiation, Nick’s speech was immediately affected. It was difficult for him to find the words though he fully knew what he wanted to say. A matter of weeks after radiation ended, we were blessed with an opportunity to travel on pilgrimage to the Holy Land with trusted guides and friends, Steve & Janet Ray and Al & Sally Kresta – an experience we had always dreamed of yet never thought would become a reality. Although tired as he was recovering, and stumbling over his words, Nick was a faithful friend and companion helping Al get the full experience navigating an ancient city despite being in a wheelchair.
The Ave Maria Fall membership drive was upon us. Nick did his best but knew that his voice issues did not make for good radio and removed himself from behind the mic. He kept up with doing the news & everyone’s favorite fascinating fact for quite awhile but instead of going live he worked with the team to pre-record and edit the news. As his speech continued to show no improvement, he stepped back from that responsibility as well. Throughout the fall of 2017 things were fairly normal apart from the speech. We kept our normal routine and were encouraged by reports that the radiation had done its job and the tumor was dormant.
As Christmas approached, Nick continued to experience increased loss of sensation on his right side. He found himself unable to play his normal role of Christmas tree wrangler & light hanger extraordinaire.
I happily jumped in and added some new skills to my resume of life. We traveled to Georgia in February for our goddaughter’s Baptism and by this time his motor function was being affected. Walking was becoming unsteady and he required a helping hand to steady himself. Although the MRIs showed little to no change, motor function continued to quickly decline. He gave up driving as it felt unsafe given his limitations. It was at this point we decided to seek yet another opinion.
We had a short list of top notch hospitals and quickly connected with the docs at Duke University. We traveled to Duke in March and Nick had a biopsy to determine whether the tumor was active again or if he was experiencing the effects of radiation. Apparently the effects of radiation can still develop years after and they can also come & go in waves. Our surgeon is world-renowned and we knew we were in capable hands. It was clear from the biopsy that the tumor was dormant and Nick was experiencing the effects of radiation necrosis. Although the laser beams are held to an incredibly tight margin, the surrounding good cells can also be affected. The bad cells were held at bay, however several good cells were lost in collateral damage. So we were thankful for the inactivity of the tumor, yet disheartened with the continual decline.
After the biopsy in March, there has been continued decline. Nick began another drug, technically a chemotherapy, which had been shown to alleviate some effects of radiation necrosis. By May 2018 he was using a walker to help steady himself, however, with continued loss of sensation on his right side, he was unable to feel the walker in his right hand and it became difficult to grasp, so we moved to a multi-pronged cane. We also began occupational, speech & physical therapy.
After using half of our allotted 30 total therapy sessions by insurance, the therapists taught me how to help him at home and sent us off with loads of homework. We paused outpatient therapy at the end of May in order to conserve sessions, not knowing what was coming in the weeks ahead.
Our summer was very busy as the kids and I wrapped up another school year, we traveled to a family wedding in Kansas, annual friendcation, vacation, countless house guests, and a family trip to Duke. In the midst of this he developed frozen shoulder on his right side (unrelated) which caused excruciating pain. He received a steroid shot and that held the inflammation at bay. Just this week we went in for a second shot as it reasserted itself. A frozen shoulder takes quite a while to resolve itself.
Nick continued his infusions and the MRI was very promising, showing that the blood pathways were awaking after the trauma of radiation. However, his speech & motor function continued to decline. It became clear that we needed to have some tough conversations and start planning for the worst, while still trusting and hoping with reckless abandon that our story was not over yet. Some practical preparations included adding a ramp from the garage into the house, installing handicap bars throughout the house, adding additional railings to stairwells, converting the playroom & would be office into a first floor bedroom, and remodeling the first floor half bath into a fully handicap accessible full bath.
With two stable MRIs, the doctors from all three hospitals were in agreement that we should stop the chemotherapy infusions. Unfortunately the drug we had such hope for did not alleviate any of Nick’s symptoms. While school was out we took advantage of my lighter schedule to pursue aquatic therapy. It’s amazing how much more one is able to do in the pool vs. on dry land. We have been at it for the past 5 weeks, working hard on gaining muscle strength and mobility. Nick manages to get around the house with the aid of a cane and foot brace. Since he is unable to feel his foot hitting the ground, he was rolling his right ankle. I was watching each step and supporting his ankle. For any distance over roughly 10-15 feet at a time we use a wheelchair – a Cadillac model by all standards, found by a dear friend at a garage sale! We use an electric scooter on long-term loan from dear friends for any major outing like the zoo.
This brings me to second purpose of this website – to elicit your support. First and foremost we beg you to keep praying for a total and complete healing – that the tumor is obliterated once and for all through miraculous healing, for complete restoration of his speech and motor function, for an outpouring of grace on Nick, me, the kids, our friends & family as we carry this cross together, for wisdom for the doctors and us as we make the best decisions for Nick and our family, for an increase in faith, peace and hope as some days are much harder than others, that we continue to trust with reckless abandon knowing that our loving Father is already there, is always faithful and His grace is always enough.
But also we come humbly before you to ask your financial support as well. As you can imagine, all of this takes a significant toll on all aspects of life, not the least of which is the bank account. Since the biopsy in March, Nick has been unable to work. We just began short term disability, meaning that for the next six months insurance will pay 2/3 of his salary. I am back to school, teaching M-TH until noon and one class on Fridays. We have 5 sessions of therapy remaining – that’s two weeks of physical therapy, after which we will have to either work independently at home or pay out of pocket. My plate is overflowing between teaching, managing all aspects of the household, and caring for my family. Nick is unable to make phone calls, emailing and texting are difficult as spelling has been compromised, and memory and math skills have also been affected. He’s unable to help with the normal stuff of family life like dishes, laundry, cleaning. I am the sole driver. It’s quite normal for me to not sit until after 11pm, and usually there are still dishes in the sink and laundry goes unfolded. Trying to fit at home therapy in is quite a challenge. The kids are more than willing to help however with after school activities, the normal piano practice, homework, showers & lunch packing, there is little if any time in the evening for them to help if they are going to get the sleep they need. Many friends have lightened my load with rides for the kids, dinners, lawn service, and helping to transport Nick to and from appointments. Very practical daily needs like that always arise. If you are local to us and willing to help in any of those ways, please contact me through the website using the Contact tab and I will put you on our list of amazingly awesome helpers!
We have set up a Go Fund Me page to help with the costs associated with a long term illness. There are several things I can put a price tag on, such as out of pocket therapy sessions, hiring a lawyer to draw up a will and power of attorney papers, leveling the driveway, but so many more needs will arise that I can’t possibly foresee now. For more information on specific needs please choose the Donate tab.
We are so incredibly grateful that God has blessed us with such a compassionate, faithful and generous community. Please know that we hold you all and your intentions in prayer. We understand that we are not alone in carrying heavy crosses. It is our privilege to pray for you. Please feel free to share this website with your own friends, family and broader contacts. Apart from receiving extra prayers and monetary support, from the beginning Nick and I have been convicted to share our story and use our suffering to help others see the mercy and goodness of God. He placed on our hearts a distinct mission and it’s through the blessing of our particular cross that He has been able to reach others. So share often and wide!
A note about prayer: Nick and I have a particular devotion to the Sacred & Immaculate hearts. “Jesus, I trust in You” is our family motto. We are asking for the intercession of Blessed Solanus Casey and St. Sharbel. JP2, Padre Pio and Pier Giorgio have a special place in our heart. Nick’s confirmation Saint is St. Michael and mine is St. Maria Goretti. And of course our children are named for some heavy hitters as well –Sarah, Elizabeth the cousin of Mary and mother to John the Baptist, David, Andrew & Paul. We pray particular novenas for MRIs and procedures. As they approach we will post information and links on the website.
Please stop by frequently as I’ll be posting pics and updates regularly.
Jesus, we trust in You!