I’ve started and stopped this update a few times. I think it is finally time to get it done. My procrastination is exhausting. 😂

I’m sitting on the front porch swing at my parents’ home in the country about 2 hours from my house. It couldn’t be any prettier. The sun is about an hour from setting, the humidity is low, the sky is blue and there’s a gentle breeze now and then. I’m living at a country inn – or at least it feels like it. Mom has wrapped the swing chains in pretty silk flowers, her day lillies are blossoming along the porch railing and she’s made me cozy with lemonade, a fleece blanket and a pillow perfectly placed behind my back.  Dad has made a rare trip out to pick up some Mexican steak fajitas. Aaaahhh. Not a care in the world . . .

Okay. Maybe that’s not true. 😂 It sure sounds nice though, and it truly is. But as you’ve anticipated, there’s more to this story. I’ve been holed up here since March 12th because of the pandemic, I’m being told to seriously start thinking about a double lung transplant, I’m separated from my family, and my body has suffered from malabsorption since acquiring the Norovirus last fall leaving me with atrophied muscles and weight loss.

With chronic Graft versus Host Disease of my lungs, I’m always on guard for infection. When you come to my house there is a sign at each door that reminds family and friends to remove shoes and wash hands. Whenever we have a sickness in the family, we immediately separate; me to the bedroom and the other person to their room, and if warranted, I’ll leave for my parents’ or that child will leave for my parents’.

We were quick to get me out of town in March – as soon as we heard of the first diagnosis of the Corona Virus in our county. Soon after, the kids were out of school and the new pandemic life began for all of us. So, I’ve been at my parents’ for 14 weeks now.  My family and I were separated for 3-4 weeks as I self-quarantined and then they joined me here for 2 weeks. The girls returned to our home with Jonathan’s parents for one week and then the four of them went to Ohio for a week. Later, Jonathan and our son joined them for a week in Ohio and then Jonathan and the kids returned to our home in Tennessee. That’s where they are now. I’m confused by all of that and you are probably too. Bottom line is that there has been a lot of shifting around.

I’m still extremely careful here at my parents’ home and Jonathan and the kids are “reopening” with everyone else for the most part, including Amber returning to working outside the home. The separation from friends was the hardest thing for our teens. Our 9-year-old isn’t at that point, but the girls almost felt like they were missing oxygen. They really held out for a long long time, but boy were they thrilled to see a friend or two when they returned from Ohio. The sacrifice now is me being here and them being home. Jonathan has his hands full! He’s doing a phenomenal job working his own business, taking care of the home and caring for the kids. I do what I can from here, but there’s no replacing being hands-on. I think they are getting into a routine, so that’s making it easier. I miss them so much. Thank God for texting and FaceTime/Zoom!

So, starting last November I started having G.I. problems. I won’t say much about that because I wouldn’t want to know your gross symptoms, so I’m imagining you don’t want to hear mine either. Anyway, it was pretty bad. Normal people get the virus and it goes away pretty quickly – we are talking days, but for me we are talking weeks/maybe months. It’s really unknown exactly what’s going on now. (Update: Friday’s (6/19/20) test shows I still have the Norovirus from last fall.) I continue to have problems and it could be something new, could be the Norovirus is still active (there is no treatment) or maybe it’s aftereffects from the virus. The results of the malabsorption is about a 20 pound weight loss since January. My muscles are atrophied and my strength is pitiful.

At my Stem Cell doctor’s appointment last month, my doctor brought up the possibility of a double lung transplant again. Right before the pandemic, my cardiologist called me out-of-the-blue. I only see him every 6-12 months and I have a very strong heart (thank God for that!), so hearing from him was a little surprising. He said he’d been thinking about me, said I am “young and vital” and that Vanderbilt has a wonderful new transplant physician. He wanted to see if he could pursue the idea with my team. The pandemic hit and I didn’t hear back – a little to my relief. We did the whole transplant work-up 2 years ago, and I was rejected because I needed to be 5 years in cancer remission. That took a great deal of pressure off of me and I was happy to have it behind me.

Now that 5 years cancer-free has come and gone,  they are reopening my transplant possibility. My stem cell doctor and pulmonologist agree it is necessary to consider this again. The main concern is that I’m extremely susceptible to getting a life-threatening infection at anytime. But, of course, getting new lungs is not easy and does not come with any guarantees. Of all transplants, it appears to have a lower prognosis in regards to longevity and I will likely end up with bronchiolitis obliterans (which I have now).

So, we are in prayer about this huge decision. I plan to seek out all the information I can from my many doctors, get evaluated by the lung transplant team and research what I can myself/my family too. Of course, I continue to pray for God to heal me. That would be the best option! To have my chronic Graft vs. Host Disease stop, and any lung damage to be healed or compensated for would be a true answer to prayer. Although, I do pray for God’s will above all things.

I’m honestly tired. Please pray for our decision-making abilities, our strength/endurance in all things and that we will ultimately trust God in the process.

I know this update is a little confusing and the photos are a bit random. It has been a long time! So, just trying to give you a feel for what’s been going on.

Here are a few pictures from 2019 too:

I will keep you posted as things progress. Please pray for physical healing, mental/spiritual well-being and for God’s goodness to be seen in all of this. Ultimately, it is all about Him.