Now What?

Now that we’ve had some more time to explore what’s going on, I wanted to post an update focused on a few main points: 1. Frequently Asked Questions, 2. The Grace We’ve Seen, and 3. Prayer Requests. (If you're already lost, you might want to read Hard News first.)

FAQ

What’s the latest?

- Chiari 1 malformation – The MRI showed an area of concern that could have required surgery, but the docs have decided it is not necessary right now. 

- Genetic test – Should come back in the next week to confirm the NF1 diagnosis. I have very mixed emotions; I don’t know which is worse – an NF diagnosis or whatever else could be causing the…

- Brain tumor/lesions – With NF they stay local and usually grow slowly if at all, so we’re waiting for the 3- and 6-month MRIs to see if there’s any change. Fast growth—which is unlikely—would signal malignancy and probably lead to chemotherapy.

- Headaches/vomiting - We think they're migraines, and we're working to manage them with medication. Their increasing frequency scares me.

At least it’s not cancer, right?

(Most likely it is not cancer, but we won’t know for sure until early 2017.)

Yes! Metastatic cancer would definitely be worse because it can spread aggressively. NF tumors stay local and usually grow very slowly.

But… Many cancer tumors are treatable (surgery, chemo, radiation) while NF tumors are not treatable. This has been the hardest part for me to swallow.

What’s the plan?

We had a spate of appointments in October to address acute issues. Now we're working on trying to understand and manage his symptoms. We'll have another round of appointments in December. We hope to have clarity on the current situation by the new year.

How are you doing?

The first two weeks I felt shock and grief. The third week I felt overwhelmed and exhausted. With the help of our sweet village, I feel like I’m coming out of that. I’m also starting to feel what I believe – that I can trust God’s plans for us. But I still hate headache days (like today) and feel a bit fragile.

How can we help?

1. Prayer is absolutely my favorite thing and always the best way you can help. If you have a sec to shoot me a text that you’re praying for us, it warms my heart. (Specific requests below.)

2. Childcare can be helpful when I’m trying to work through insurance issues, communicate with doctors and teachers, or go to appointments, but it’s probably best for me to text people specifically as the need arises. Please let me know if you're up for this. Don’t worry – I won’t dump all 4 kids on anyone. ;)

3. Meals are the easiest thing for someone else to do, but we’re covered for now.

The Grace We’ve Seen

Many of you have heard our hard news and felt the accompanying sadness, but you may not have seen the grace that God has planted along our path. So here are a few examples…

1. Josh travels a lot, but the night I found out, he was in the air on his way home for the whole weekend. This may sound small, but as I’ve learned since, being present together and on the same page makes all the difference in how we handle this.

2. On that first Sunday after we found out, Josh called our college friend (who is now a peds oncologist at Vandy Children’s) for advice. Turns out he is the one to manage Aaron's case. He instantly made a web of specialists and appointments accessible and navigable. I don't know how to thank him - or the God who provided him.

3. I cannot imagine walking this road on our own in a new place if we'd moved to DC last spring (as we expected a year ago), so I'm just thanking God again that we are here, near family, our church, and an excellent Children's hospital.

4. Walking through the Children's hospital, there are always reminders that we could have a much harder prognosis. And while it doesn't take away the pain, I do know it could be worse. I am beyond thankful that Aaron is such a beautiful, bright, happy, little boy! I am also incredibly thankful that he has a cheerful disposition that is not prone to fear or worry.

5. When I called the NF nonprofit to find another parent, they said the local chapter's annual walk was THAT Saturday at Warner Park (across the street from our house). I couldn't believe it. It turned out to be a sobering experience, but we did get some valuable information and contacts -- and clearly it seemed like we were supposed to be there.

6. Just this morning I found out an acquaintance is going back to work. Where? Children's Hospital. Oh really, what dept? I know there are hundreds... Pediatric hem/onc. "Our" dept. Which means there will be another familiar face on that floor. #whatweretheodds

7. Katherine is such a little sunshine for our family during this time. I love to see each boy's face light up when he sees her. We all want to hold her, check on her, and make her smile. Not that it was a question, but she is a constant reminder that God absolutely knows what he is doing, even when he surprises us.

Prayer Requests

1. Current tumors would not grow.

2. No new tumors would form, but especially around anything important.

3. That the headaches/vomiting would stop or we would figure out how to stop them.

4. Wisdom in managing his symptoms.
5. That we would know when/who/how to ask for help.

Next Update: Still in the Dark