So this is NF

If you don't know what NF is, you might want to read this short page real quick first.

You know those moments, those rare, precious moments where everyone you hold dear is healthy and happy, and you actually take the time to notice and appreciate it? You are filled with gratitude for how good life is going? I've been feeling that a lot lately. It's been wonderful. So when life decided to throw us this latest curve-ball, it was, well it still fucking sucks, but it feels different than it would've if I'd been in a less grateful mindset.

Last week, I took Sebastian to a new doctor, a geneticist that specializes in NF and is trying to start an NF clinic here in Portland at the Randall Children's hospital. She was great, lots of good information and very personable. She's a parent herself which I think makes a huge difference in how well she communicates and relates with us. She ordered an X-ray for Sebastian to check on his scoliosis. His pediatrician had also recommended it but we are supposed to limit his exposure to radiation whenever possible as those with NF appear to be more sensitive to it. So we were going to wait but this new doctor said it was important for us to know for sure how severe or not it was, and to have a baseline. So we got the X-ray that afternoon.

A few hours later while I was in yoga, the doctor left me a voicemail saying she had the results and wanted to go over them with me. All my mom alarms went off. Results and phone call from the doctor that fast? I knew that meant they had found something more than scoliosis. Of course it was after hours so I had to wait until the next morning to talk to her. But my mother's intuition was right on target. His scoliosis is fine, about the same as mine, but they'd found a weird spot that needed to be checked out further. She couldn't tell me what it was since X-rays aren't designed to diagnose that type of thing. But given his NF, and the fact that it was visible on an X-ray, I knew this wasn't good news. I did my best not to panic but I was terrified.

I played the bullshit call insurance and several imaging centers game to get his next imaging scheduled as quickly as possible. So two days later, we were back at Randall's for an ultrasound. The tech, who of course is never allowed to tell you much, was very nice and was able to point it out to me on the screen. There was definitely a mass inside his body on his right side, about 2" in diameter. As I expected this time, the doctor called me a couple hours later with the results.

"We think he has a tumor on his adrenal gland."

Suddenly it was 7 years ago and I was re-living being told he had NF1. Only this time it wasn't he "might" grow tumors, it was he "did" grow a tumor. I bottled up my screaming panic until I went emotionally numb enough to hear what she had to say without bursting into tears. She was very nice and answered my questions, like what was the word you used for the type of tumor? Pheochromocytoma. Sounds big and scary like Neurofibromatosis. But she said they are usually benign and very treatable with surgery. They are common in people with NF1, but the surprising part is they usually happen in adults. She had never heard of a 10 year old having one.

Your adrenal gland is on top of your kidney. As you can surely guess, it controls hormones like adrenaline...ya know something pretty important to your body as that affects blood pressure, heart rate, etc. The fact that he has no symptoms seems crazy to me although it's not apparently uncommon, especially for people with NF. Or maybe they are totally wrong about what it is? Either way...how am I not supposed to be terrified?

After the shock wore off, I thought of a bunch more questions for his doctor. Like, how urgent is this? Is the fact that we had to wait a week just to see the next doctor OK or did I need to be calling around town trying to find something faster? Do we need to be watching for some specific symptoms? Or are we supposed to be living life as usual (ha!)? Thankfully I was able to talk to his doctor again and she helped soothe my worst fears. This isn't life threatening. We don't have to rush this. We don't know for sure, but there's a good chance he's had this tumor for a long time and he's been fine all this time so a few more days isn't going to change anything. She gets that doesn't help my anxiety as a parent wanting answers and solutions, but it does help to know I don't need to be that on-edge about it. She said if we did try to rush this more, all we would do is alarm him for no reason. And she's totally right because right now he's not alarmed and not suffering.

Next, he had to see an oncologist (who we saw Friday). Just hearing the word "oncologist" made me almost lose my composure. I'm sure I'm not alone in associating oncology to cancer and cancer to some scary shit. But as I explained to Sebastian, she's just a tumor doctor and they consult with one for all types of tumors. She said the most likely possibilities are a pheochromocytoma, paraganglioma, or a neuroblastoma. The first two are usually benign but the last can sometimes be malignant. Surgery is the treatment for all three, but if it is malignant, he'd also need other treatment.

She ordered a contrast MRI (scheduled for this coming Saturday), which they need to get a better idea of where exactly the tumor is so they can plan the surgery. They'll do more lab work to check if it is a hormone-secreting tumor or not. Assuming the results are as expected, then we will need to take him to a nephrologist for medication called alpha blockers that he'll need to be on for several weeks before they can do surgery. Apparently these types of tumors can start sending surges of adrenaline during surgery, making his blood pressure dangerously high so this medication is supposed to help prevent that. At this point, we are probably at least 4 weeks away from surgery.

This kid is amazing. He is handling this so well, and with so much calm and grace, way beyond what I would expect from a 10 year old, or an adult for that matter! Most of us would freak out a little to be told we had a tumor, at any age. When we told Sebastian, the conversation went something like this:

Sebastian: "I have a tumor?!"

Brian: "Yeah, on your right adrenal gland which is on your kidney right here," and he showed him where on his body.  "You'll probably have to have surgery to remove it."

Sebastian: "Will they put me to sleep for the surgery?!"

Me: "Of course, baby, they will never cut on you while you're awake."

Sebastian: "...what if I have to pee?"

Brian & me: Bahahaha! Brian described a catheter to him and that his body will just pee into the tube.

Sebastian: "I'll be able to pee all the time?!" And he fell to the floor, laughing hysterically.

This kid, seriously, he's so great.

I didn't handle it as well as him. When I first heard the news, I was ripped out of my precious place of gratitude and thrown right back into the stages of grief. This can't be happening. This is total fucking bullshit. This isn't fair. Why my kid? I wish I could take it from him so he wouldn't have to deal with this now and for the rest of his life. Maybe because we've been through this hurt before, or just my recent happy place, but I made it back around to the acceptance phase pretty quick. Because worrying and stressing over the things you can't control? Yeah that's a waste of time and energy and I don't have enough of either to be wasteful. So as hard as it is, acceptance is what has to happen to move forward.

The truth is, THIS is what NF1 is. We've just been so incredibly fortunate so far that Sebastian hasn't had any tumors, or any that have caused him problems or been found at least. Most neurofibromas and NF-related tumors are slow growing and don't cause any problems until they finally get big enough to push on something important or a nerve that causes pain. If we had opted to keep waiting on that X-Ray, we wouldn't even know about this one now. We'd still be in blissful ignorance. But maybe catching it now means we get to avoid anything really scary or painful that may have otherwise happened to him if this had gone undiagnosed.

So here I am, trying my hardest not to be scared or angry, and to come back to my place of gratitude. And I am doing pretty good because I am so grateful for so many things. I'm grateful that we had 10 years without Sebastian having a tumor. That NF has taught me compassion and empathy for all parents of kids with chronic health conditions. That he is such an awesome kid and handling this so well. That I've had the opportunity to do a crap-ton of yoga lately that's helped me stay mostly positive about all this. That Brian is my partner through all of this, that I can hug him and cry whenever I need to and receive no judgement, just complete understanding. That our little family is stable and full of love. And most of all, I am grateful that we found this tumor before it caused Sebastian any pain.

So send us all the good, happy, healing thoughts and energy you have to spare. And never underestimate the power of gratitude to get you through rough times.