The Journey Begins — Dr. Nace Lanier

This post is a continuation of Josiah’s Journey—a blog series I am rewriting to share my son’s courageous fight with pediatric cancer. When the story is fully told, I plan to publish it to share with others in their struggles and trials.

April 23 2015

This journey began a few weeks ago with some seemingly unrelated symptoms presenting themselves in a way that made them appear as something else. Josiah commented about seeing two of something and then not mentioning it again...frustration over math problems that was probably (in hindsight) a result of double vision issues...Josiah walking a little strangely that looked like the result of a recent sprain.

However, last Sunday (4/19/2015) the symptoms came together in a way that we knew something much bigger was going on. Josiah couldn't stay up on his bike. He was unsteady and simply unable to ride without falling over.

Test

Josiah was taken to the urgent care where they performed a CAT scan but nothing was readily apparent so they released Josiah.

Something was still wrong though. As Josiah was telling me about falling in the grass, smiling the whole time, he was swaying and his eyes didn't seem to be able to focus. Then, out of the blue, he just fell down. One moment he was standing there and the next he was on the floor.

Moments later, a call came in from a Kaiser neurologist who had reviewed the CAT scan and saw something that differently-trained eyes did not. There was something unusual and she instructed us to get Josiah to Children's Hospital in D.C.

Josiah was admitted and an MRI was taken the next morning. After what I'm certain was 463 years (but was in truth about six hours), the results came back confirming what no parent should have to ever hear about their child...it's a brain tumor...an extremely rare one...one that can't be removed by surgery...one that has a single digit survival rate.

Next Steps

Children's Hospital is amazing. The staff was great and really good to Josiah. He got to watch the movie Captain America, and they even brought in a Wii for a while. We gave Josiah a patch to wear over one eye to combat the double vision but it makes him self-conscious so he doesn't always wear it. Tuesday a counselor came in and talked things out with all three kids. Josiah really liked her.

It's difficult to process all that's happened this week. It's a bit of a jumbled mess. So many people, doctors, family, texts, emails, voicemails, all the stages of grief (sometimes simultaneously), and praying.

But now I need to lay out where we go from here.

So much information has been thrown at us in the last week that sorting through it all has been a chore even as we all try to deal with our new reality...nothing about this seems quite real.

The first decision we had to make was regarding some clinical trials for which Josiah could be a candidate. The key was a very new biopsy procedure that he would have to undergo before any radiation treatments began. The procedure has never been performed at Children's Hospital and has rarely been performed anywhere in the US because the risks have historically been considered too high for the possible outcome...identification of the tumor.

Because this biopsy can ultimately result in identification of the actual DNA structure of the tumor, the research implications are important - which is why this biopsy is the gateway to clinical trials.

When you hear words like brain tumor and inoperable in the same sentence as your child's name, there's one thing that is inescapable. You take as many swings at this tumor as you can get. You give your child every possible opportunity to beat this thing. So we agreed. Josiah will have the biopsy this upcoming Tuesday.

First decision made.

Introduction

Josiah had the first radiology visit today. It was more of an introduction than anything. It wasn't too bad.

Tomorrow, he's going up the school with his mom to have lunch and then he goes back to the radiologist to be fitted for a mask that he will wear during his radiation treatments. I believe the mask is designed to immobilize his face and head while the treatment is taking place. He will have 15 minute treatments, five days a week for six weeks.

But before the radiation begins...

Monday Josiah goes back for another MRI and then Tuesday morning we take him back to Children's for the biopsy. We don't know the exact timeline after the biopsy is complete for next steps. But we'll know more in the coming weeks.

Then, a week from this Monday radiation begins. Radiation does not have a history of curing this type of tumor but it does slow the growth giving the medical professionals more time to do what they can and work with the treatment.

So the next decision that we will have to make is related to the clinical trials. Once Josiah gets through this biopsy and they work out the kind of tumor this is, we will be presented with two, three, or possibly more clinical trials ranging widely in treatment methodologies. Some are like chemo and some are like radiation and honestly we don't even know all the options yet. We will have to decide at some point and once that course is set, that is the course Josiah will be on. There's no changing to other trials.

For the immediate future, we are going to do our best to help Josiah, as well as his sister and brother, navigate this uncertain road as best we can and pray for God to see us all safely through to the other side.

Thank you for walking with us.

About this post: This is the first post to the Caring Bridge blog. My friend Michael created it for me to share medical updates. There were classmates, teachers, administrators, neighbors, church members, friends, friends of friends, and others who wanted to hear what was happening with my boy. Posting it to Facebook would meet a fraction of interested people. A public blog was the best and fastest way to get the facts and information to interested people as we could.

I have done a little editing for clarity, but not content. It was an awful and crazy time. It was the best I could do. I hope you see that in and through my heart to tell this story.