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.

I never posted this. Oh well. It’s only been 6 months . . . It’s Christmastime! Can you believe it? I never do. Ever since I became a mom – 17 years ago – Christmas seems to come around on a faster pace. As soon as we pack up Christmas, it’s time to unpack and vice versa. As soon as little painted faces and costumed creatures come around in search for treats, I know that the starting gun is about to be sounded, and it frustratingly stirs up my anxiety. Isn’t that a shame? I truly hate how the celebration of Jesus’s birth is taken over by the onslaught of perfectionism for the ideal family celebration – basically well meaning but each area overdone; gifts, decorating, parties, traditions, etc. Each good on its own in a measured amount, but they all get hyped-up and completely distorted which leads to a complete distraction of the holiness of the season.  Maybe many disagree with me, but I sure wish we could turn the pace and the volume down a bit. I feel sad that I often feel relieved when Christmas Day is over, and then we can kick up our feet and breathe and hopefully remember to give God the glory he deserves.

I’m at my parents’ home right now. It snowed last night and it is so beautiful on their pond with a couple of snow covered mountains in the distance. My bedroom looks out to the snow through a plantation shuttered window with a Christmas wreath and big red bow framing the scene. Beautiful and peaceful.

I’m here recuperating. My parents home is just a couple hours away from ours and it’s our escape plan when someone gets sick or I get sick.  A few weeks ago it was our son, who escaped here to get over a sore throat and cough. Now it’s my turn. A couple of days after Thanksgiving, I ended up in bed for a week with a stomach bug, while also fighting a cold and experiencing extreme eye dryness with tenderness and occasional pain that was severe.

My stomach is clear now – thank goodness! Now I just have eye dryness and the cough from my lingering cold. It’s good to try to keep this at bay so that there’s no need to go to the hospital or let the situation worsen (which can scar my lungs – making my disease worse).

It’s been kind of a confusing year with my health, but overall I’d say I’ve improved. The last time I wrote, I had had an excellent improvement in some of my lung function testing. Then, the latest test in November showed that same area of testing was back to my original number – and my pulmonologist wonders how real the spring result was even though we retested it time and again bc of the great improvement.

I’ve been all over the map with the practical use of my lungs. At the beginning of the year I had times that I had to use my wheelchair and then at my peak in October I walked on the beach for 30 minutes while Jonathan carried a tank of oxygen on full blast. It was heavenly! If I can crank up the O2, I can do a lot more physical exertion. The practicality of hauling tanks and replacing them frequently is a logistical issue, but at least I can do it with pre-planning! I even walked in my neighborhood a few times this fall which has been years. Its really a canundrum since I can do those 30 minute jaunts when I plan it out, but then I get winded do the simplest task around the house b/c I can consistently bump the oygen up and down depending on every movement I make, so I usually try to consolidate my more physical times where I turn up the oxygen for a while and otherwise try to keep it at my baseline.

Despite the last pulmonary function test in November not looking as encouraging, I’m still praying

Where to begin . . . I guess I’ll just start and see where we go. I have good news! Yes, GOOD news!!! It’s been a long time since I’ve been able to say that. Thank you Jesus that I can share this with you.

Last week I had a full pulmonary (lung) function test and two doctors’ appointments.  My lung function has greatly improved since my January measurements. The respiratory therapist repeated the tests several times to make sure he was getting an accurate reading.

The most remarkable part of the testing was my DLCO level. “The DLCO measures the ability of the lungs to transfer gas from inhaled air to the red blood cells in pulmonary capillaries.” It was 50% (normal is greater than 80%), but for me, this is an incredibly good number. In January it measured at 29%.

I knew subjectively, that I was doing better. At the beginning of the year, I struggled to get dressed. Being a lover of iced tea, I drank water instead because I was too tired to brew tea. It was not looking good. I told my lung doctor last week that I felt I was headed in a downward direction and he said, “You were.” My stem cell doctor also believed my health was headed in the wrong direction. He said, “I was very concerned.”

Then, my stem cell doctor blew my mind last week.  He told me that he believes I will eventually come off of my supplemental oxygen! Something I had resigned myself to, may never happen.

In March, things started turning a corner. On my Fitbit watch I was averaging 725 steps per day. This month I’m averaging . . . drumroll . . . 2,470! That’s a huge difference in strength, endurance and accomplishing the things a stay-at-home mom wants to do!

So, of course the question is, “Why the improvement?” We don’t definitively know. My goodness, we’ve been hammering away at this GVHD of the lungs for nearly 3 years (2 years and 7 months on oxygen).  I came off of the GVHD study drug in February and began a new drug, Imbruvica. We also tweeked my other medications here and there. I began feeling so much better in March – but that’s too early to positively link it to the Imbruvica. But, hey, I’ll take it! I’ve had incredible physicians’ care and most importantly, the Lord has walked with me this whole time. He’s guided my medical team, given endurance and patience to my family and friends, and dealt with me in my own spiritual tug-of-war. So, why now? I’ve begged Him for health for nearly 6 years. God only knows.

After many more months than originally assumed, the trial drug began to show signs of being less effective. So, we decided to try a new drug for the lung GVHD about a week ago. Please pray that we see clear improvements in April’s lung numbers. I’ll post another update soon. Thank you!  Jonathan

I just want to pass on a very quick update. The last few months have been very difficult for April. Her breathing has taken a bit of a hit – likely from a few small colds combined with less activity as she dealt with the eye infection. This makes small tasks around the house very difficult and frustrating. Please keep her in your prayers – for lung and eye healing. Also, keep me in your prayers as I try to maintain the home, kids’ activities, and the challenges of running a small business.

However, in this challenging time, our faith and trust is increasing . Each day still has very real difficulties. But it’s even more clear to us that we are loved by God.

And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful. Colossians 3:15

Two and a half weeks ago I had a consult with a Vanderbilt Lung Transplant doctor. We had a long discussion about my medical history and looked over the results of my latest Pulmonary Function Test (holding steady with FEV1 at 22-24% (“severe obstruction”), a new CT of my chest (“stable diffuse brochiolitis obliterans related to Graft vs. Host Disease”), new chest x-ray (“hyperinflated lungs with bronchioectasis”), and a 6-minute walk test (“44% of predicted indicating severely decreased exercise capacity”).

Prior to the appointment, I received a packet in the mail from the transplant team with some general information and brochures. I knew that a transplant was serious stuff and I knew that rejection can be a big concern (and I’m already comprised of myself and my bone marrow of 100% donor cells, so how does a third person enter this picture?) However, I was really surprised that not only is the first year challenging, but the average life span after a transplant is 6-8 years! My regular stem cell doctor hasn’t given me anything close to an “end date”, so that was pretty shocking to read. My quality of life has been greatly impacted, but not to the point that I want to shave off years to breathe fully for a while.

After speaking with the lung transplant doc., he felt like my main disqualification would be my previous lymphoma cancer diagnosis.  I’m almost 3 years cancer-free (yay!), but they generally have a waiting period of 5 years.

He called me last week and verified that they were denying me because of this rule, and that if needed they can re-evaluate me in 2 years. However, he mentioned how impressed he was with the study drug that I am on.  He said I’m very stable and that’s good, and he was actually talking to my drug study medical director to see if he may be able to try it on some of his lung transplant patients. I had learned during my consult, that most transplants eventually end up right in my type of situation as the years go on.

Lungs are the least successful of all transplants.  I had no clue.

Right now, I’m happy to be denied. I really don’t want to go through another transplant (he said it would be similar to the other two [stem cell] I’ve been through) and I even question if I have the stamina right now.  I’m still recovering in so many ways.

So, I’m praying for healing from God. I’m meditating on the time Jesus healed the sick in the Bible. I’m visualizing the Holy Spirit living within me and repairing my lungs. And I’m thanking God for the breath I have. I also know that new treatments are constantly in the works and who knows what breakthroughs will be made.

Amber 15, Harrison 7, Elizabeth 13

God sent his Son into the world not to judge the world, but to save the world through him. John 3:17

I was so frustrated and emotionally spent yesterday. I had been to the pulmonologist on Wednesday for a lung checkup. My breathing spirometry test showed that I’m holding steady, so no real improvement, but thankfully no decline in function either. We talked a little about the possibility of a lung transplant down the road if needed. Obviously not something to consider lightly, but just appropriate to put it on the table as a possibility someday. However, with my medical history the question of eligibility will be considered by the Vanderbilt lung transplant team – I would be considered high risk, and it comes down to quality of life. A lot to think about and consider.

{Joshua 1:9} “Be strong and courageous. Do not be afraid; Do not be discouraged, for the Lord your God will be with you wherever you go.”

Yesterday, Thursday, I went to my stem cell clinic to follow-up on the completion of my 6-month drug study trial for Graft vs Host Disease of my eyes and lungs.  I felt the urge to cry – just tired and anxious – but my eyes really don’t make tears so it’s a weird surge of the crying reflex without the release. I went to get labs and then to the clinic on a decent length walk. I had four items behind my ears. My headband, my glasses, my oxygen tube and my mask to keep away any germs.  My glasses were fogging up and my ears were pointed out from all of the attachments. Not to mention, I was out of breath and lugging my oxygen, charger, bag, study papers/drugs, etc. I felt a little clumsy to say the least , especially when one or two items would pop out from behind my ear. Ridiculous . . .

{Ephesians 2:19-22} “Whenever you feel unloved, unimportant, or insecure, remember to whom you belong.”

At my appointment I would’ve had a breakdown but I can’t cry so I just verbalize my frustration. My nurses were completely empathetic especially with it being Christmas and the responsibilities moms feel. There is also a feeling of coming out of the fog after fighting for life and now settling in to a disability that prevents almost all physical exertion – at least many tasks demanding a recovery period.

{2 Chronicles 20:15} “Do not be afraid or discouraged, for the battle is not yours, but God’s.”

The doctor, whom I don’t see regularly, was stern yet encouraging.  He said I must not be discouraged. He said this several times. As a command versus a suggestion. I guess he’s seen it enough that he knows your feelings can affect your outcome. At least that’s how I took it. He told me the transplant can always be an option (if eligible) , but that he’s seen worse lung GVHD patients whose lungs compensate after 5 years and they come off of oxygen. He says that lungs can begin to inflate in different areas, not unlike a single lung compensating for 2. Maybe breathing at 80%. That sounds hopeful. My job will be to keep my lungs healthy since infection can delay lung repair for an extended time.

{Psalms 112:7} “She does not fear the bad news. She confidently trusts the Lord to take care of her.”

I will try to refocus my mind on thankfulness and gratitude.  It is Christmastime, and as the rush slows down and time for enjoyment and reflection arrives, I will try to praise the Lord for His love for us, our gift of eternity with Him and all the blessings He’s given us.

One of the best gifts to me, has been my marriage to Jonathan. He is still my very best friend after TWENTY years of marriage! That is a tremendous gift especially having a partner to navigate this crazy life with. We celebrated last week in the Smoky Mountains for a few nights in a quiet, beautiful cabin. God is good even if we only “feel” the good now and then.

“In one of the villages, Jesus met a man with an advanced case of leprosy. When the man saw Jesus, he bowed with his face to the ground, begging to be healed. “Lord,” he said, “if you are willing, you can heal me and make me clean.””
‭‭Luke‬ ‭5:12‬ ‭NLT‬‬