This is what support looks like

Within a 6 month period (June – December, 2018), I had 37 office visits, over 30 recorded focal seizures, 15 MRI’s, 7 CT scans, 4 hospitalizations, 2 craniotomies, 1 infection, and 1 incurable diagnosis, Neurofibromatosis, type 2 (NF2).  I had 17 Meningiomas (brain tumors),  6 ependymomas (spinal cord tumors), and 1 Acoustic Schwannoma (brain tumor in my ear). And a partridge in a pear tree.

I learned so many things during that period of time. One of them is support comes in many formsI also learned that it changes over time. No matter what form it takes though, a support system is meant to hold you up when things feel like they are crashing down.

Overwhelming Support

Initially, our extended network of friends and family were as shocked as we were by my diagnosis. We were flooded with cards, flowers, well wishes, handmade children’s art, visitors, and more thoughtful gifts than I could count.

Support

During this time, my husband, Josh, and I leaned on everyone. We were all hurting, together. I say “we” because it is not just the person in the hospital bed who needs support. I was fully aware that my diagnosis affected everyone I loved. At that time, they needed my support as much I needed theirs.

Private Support

After a few months, the ‘hype’ of my sudden diagnosis and back-to-back surgeries began to wear off; our meal train ended, and our wide circle of friends and family weren’t checking on us quite as often. During this time, Josh and I learned to lean heavily on each other for support. 

He needed me to be okay just as much as I needed him to push through all the medicine my body required to beat the infection. The infusion process took about 30 minutes, and it quickly became our daily reminder that we were fighting this battle together. 

Picc Infusions

In addition to taking care of me, and my PICC line, Josh also took on all of the parental responsibilities and housework we had previously shared. He bathed our crazy babies, made them dinner, picked them up from school, and put them to bed. He did all of our laundry, grocery shopping, fed the dog, and took me to appointments. It was like he was a single dad who had 3 kids (me being one of them)

When Josh had to go back to work, things changed again. I was still vulnerable and unable to take on my share of our daily responsibilities, and he could no longer do it all.

Balanced Support

That was when we realized we couldn’t do this by ourselves; we needed help.

During this time, Josh and I learned to lean on those who love us most.

Grandparents to the rescue! My mom-in-law stepped in immediately to help with our boys, take me to appointments, and make meals. She was available at the crack of dawn, and as long as I needed her until Josh got home from work at night. She offered irreplaceable love, and both physical and emotional support.

Nannie

My dad and step-mom also recognized our unspoken need for help, and flew in from Kentucky to offer reinforcement, at just the right time! They stayed with us for nearly 2 weeks, and did everything that I couldn’t at that time, allowing our boys to maintain normalcy in their own home. 

I remember waking up late one morning. I grabbed for the baby monitor and realized it had been silenced. I listened, and heard the most amazing sound in my house: normalcy! My dad and step-mom were playing with our children, and feeding them breakfast. Coffee was brewing; the smell reminded me of when I was a child. Those moments were the most healing. We were not alone.  

I’ve always said that having an amazing support system was critical to my recovery. Now, you know why.

We got through it. Together.

This is my story, and it is not over yet.

I want to take a moment to extend a heartfelt THANK YOU to every person who had said a prayer, sent flowers, made gifts, visited, brought meals, or wished us well throughout this process. We are so blessed to have the support system we do, and forever grateful.

Neurofibroma-what!?

Neurofibromatosis II. Neuro – Fi – Bro – Muh – Toe – Sis. NF. NF2.

The first time we heard this word was the day I was diagnosed with Neurofibromatosis Type 2 (NF2). I had never heard the word before, and had no idea what it meant.

Initially, all we knew was that I had two large masses (meningiomas) covering a good portion of the right side of my brain, causing partial seizures on the left side of my body. I was admitted to SkyRidge Medical Center, in Denver, for observation with the understanding that I could have brain surgery as soon as the next morning due to the sudden nature and severity of my symptoms. In the meantime, I spent a great deal of time in MRI machines (thank goodness I’m not claustrophobic), and had more tests and conversations with specialists than I could count. It was a complete whirlwind.

We learned so much in those initial days; NF2 is incredibly rare; it currently affects only 1 out of every 30,000 people; it is typically hereditary. Since no one in my family had been diagnosed, it was concluded that in my case, NF2 was the product of a spontaneous gene mutation, which is even rarer.

Each of our children had a 50% chance of having it too. That was devastating. My reaction? I needed to see my kids. They had been staying with family while my husband, Josh, and I were at the hospital. I couldn’t get my arms around them fast enough. As soon as they walked in the room, I pulled them right into the bed with me and studied their faces. Was it possible that tumors could be lurking behind those cute little eyes? Had there been signs? Had we missed something?

little visitors in the hospital

Every night before I fell asleep, I would pray that they wouldn’t be diagnosed in the days to come. I didn’t pray for me. I prayed for them. I knew that I would find the strength to endure whatever came next as long as my children were safe from the monstrosities of NF2.

The only fool-proof way to confirm the diagnosis is by genetic testing, which can take several weeks. We called our pediatrician, and she put in the orders for our boys to see Genetics. Since they weren’t showing signs or symptoms of NF2, we would have to wait, one of the hardest things I’ve ever had to do.

Unfortunately, I didn’t have the luxury of time on my side. Rather than starting the process for my own genetic confirmation of NF2, I was tested for characteristics of the disease. The hallmark of the disease is bilateral acoustic schwannomas (tumors in each of the ear canals). My MRI proved that I had one in my left ear. This causes balance issues, and will eventually lead to hearing loss in that ear.

The MRIs also showed meningiomas. At first, all the doctors could say was “several.” Then they said “many.” The final MRI report told us there were seventeen. SEVENTEEN little intruders hiding away in my brain. Thankfully, they all showed qualities of being benign, another indicator of NF2. But, they can still do as much damage as malignant tumors, and are often treated that way with forms of chemotherapy, surgery and radiation.

During one of several visits with a neurologist, I asked, “how long have the tumors been there?” He replied, “Probably most of your life.” I must have had a shocked and confused look on my face. He asked, “have you ever heard ringing in your ears?” My response was, “yes, doesn’t everyone?” Apparently not.

I soon realized not everyone loses their balance and falls over putting their shoes on; not everyone has headaches for five days in a row; not everyone slices their hand every time they use a knife; not everyone has over reactive reflexes as a child that intensify as they age. I had become so accustomed to these things that I didn’t even know they were signs. My body had been trying to tell me for years that something was wrong, and I had completely missed it.

Just when we thought we had finally wrapped our heads around everything, we were thrown another curve ball. Spinal tumors, often ependymomas, are another indicator of NF2. My MRIs showed them, too. I have six more invaders growing within my spinal cord; the largest one growing in my neck area. This is the scary one. Even if you’re familiar with my story, you may not know this. That bright white spot in the photo below can eventually cause paralysis from my neck down. The discovery of this tumor ended up being the reason I was released from the hospital. There was not a brain surgeon who would operate on me without weigh in from a spinal specialist first.

Spinal Cord Tumor

So, I was released, and connected to ‘the best’ neurosurgeon and spinal specialist in the area. We left the hospital with more questions than answers. We also left with the gift of time. Rather than being rushed into emergency brain surgery, I got to go home to my family. It was all I wanted. I had never been so grateful to just be alive.

I was working with one of the best neurosurgeons in the U.S., and I will always remember something he said to me during our first appointment, just a few days after my release. He said, “Nothing has changed. These tumors have likely been a part of you for the majority of your life. The only difference is now you know about them.”

He was right.

This is my story, and it is not over yet.

*DISCLAIMER: This post documents my own experiences with Neurofibromatosis II. There are various forms of the disease, and every case seems to present itself differently. This blog is not intended to offer medical advice or counsel. Please refer medical questions to your team of doctors.