Answers

I'm typing this post from a hospital bed at OHSU in Portland. On Tuesday, someone from the neurosurgeon's office called to let me know they wanted to move my appointment from Thursday to Wednesday. She also mentioned the doctor would likely admit me after my appointment. I don't think anyone's excited about a hospital stay, but we knew this would be progress toward a more specific diagnosis and eventually treatment.

At the consultation yesterday, the surgeon explained what tests he wanted to run and also that he wanted to do a biopsy on Friday. The results from the tests will help inform the decision about the surgery. Last night, I had another brain MRI and a spinal MRI. It took nearly four hours. We are waiting for the neurosurgeon to fill us in on the results of the scans.

Today I have also seen PT, OT and had an EKG for Pre-op. Everyone here is very friendly and professional. I have gotten lots of compliments from everyone about the awesome socks my friend Michelle brought me.

The hospital is clean and beautiful. Check out the view from our room.

We feel like we are in good hands. The food is even good here. Food is ordered from a menu and it is like room service. There is no green JELLO and all of the fruits and veggies are fresh.

The surgery tomorrow should be a routine procedure for the surgeon. He is experienced in this procedure and is being very thorough before he moves forward. After the procedure, we will have to wait five to seven days to get full results. The results will allow everyone involved to agree on a full treatment plan.

We are in good spirits here and have appreciated everyone visiting and reaching out to us. Will post more as we know more. Thank you for your continued support and prayers.

Waiting

Already we are learning that our frame of reference for "accelerated" and "speedy" is very different from that of the medical world. After receiving a call today to schedule me for another consultation with a neurosurgeon, I had so many questions. I made several calls and left some messages for doctors to help me understand and finally got a call from a PA for the neurosurgeon I saw last week. She filled me in on the notes from the tumor board that met today to review my case.

They do not think it is best to begin treatment without a better picture of what we're actually dealing with. This means they are recommending further tests and imaging to try and determine what type of tumor I have and how they can best treat it.

I have an appointment scheduled with a different neurosurgeon on Thursday who will let me know what tests they want to do and hopefully get those scheduled. They also have a referral in to a neuro-oncologist who I expect to hear from next week.  

We know they want to do another MRI (this time of my brain and my spine) and a lumbar puncture. My prayer is that these tests and whatever others they have planned will give them enough answers so they don't have to do a biopsy, which I've already been told would be risky.

Obviously waiting for the next step is not easy. Brack and I are feeling a little frustrated by the waiting, but we are looking for the good in it. We've enjoyed having my mom here this week and are already counting down the days until our kids are home! (It's 26.)

New journey

I haven't written a blog post in over 3 years but thankfully this little site is still here. It occurred to me that keeping my health updates in one spot would be a simpler way to share the information with family and friends.

If you want to start at the beginning, here it is. About 3 months ago I started noticing I was having vision issues. I was seeing double at times and couldn't figure out why. In early April, I visited an eye doctor hoping it could be corrected with a prescription change. No such luck. The eye doctor could see the problem and wanted to find out the cause. I went to a series of doctors and some things were ruled out (like diabetes and thyroid issues).

In the meantime, the double vision was getting worse. It was happening (and still is!) constantly. I had an appointment with a neurologist on June 7 to check for possible neurological causes. An MRI on June 20 showed a tumor on my brain stem.

At this point, we are waiting on doctors at OHSU in Portland to review my case and recommend a treatment plan. What we know is the tumor is in a high-activity center of my brain and the neurosurgeon said a biopsy is too risky and he considers it a non-surgical case.

We are expecting more information on Friday afternoon and have been told treatment will likely be a combination of radiation and chemo. As of now, I have a few symptoms but no pain. My eyes only work individually and not together so I spend most of my day with one eye patched. My coordination and balance are off so Brack helps guide me around. I am recently noticing my tongue is feeling numb and my speech is starting to slur. Also, my handwriting is getting worse so be glad you're reading a typed message.

Brack and I have been blown away by the responses of people near and far already. From Fayetteville, GA to Parkdale, OR we've received calls, texts, emails and cards from friends old and new. Our co-workers have already gone above and beyond during their summer break to make it clear they are here for us. It's such a comfort to know so many are thinking of us and are willing to support us in this season. Thank you.

Brack and I are praying people. We are hopeful that God is already working toward healing and we are thankful for the peace and grace we've been receiving each day. We're also thankful for humor--if you know us at all, you know we're making jokes. Laughter fills our home each day and I wouldn't have it any other way.

Our kids went back east to spend July with grandparents. While we filled them in on what we know, it's not something that's too easy to understand. I'm thankful they are having a fun summer with family while Brack and I try to figure out this new rhythm.

My mom flew out to come see us this week. She's been a huge help around our new place in Parkdale and of course a great encouragement to me. Those of you who know her understand why I'm so glad she's here.

I'll keep posting when there's more news to share. Thanks for being part of our story.

-Jordan

Me and Brack at Crater Lake

View of Mt. Adams from our friend's house in Parkdale, OR (our new town!)

On Mount Hood (in June!)

Mom and me enjoying the summer in Hood River