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

We are already in November! How in the world did that happen, again?! I think we just put away Christmas decorations a few months ago, and I’m sure some of my neighbors are already finished with their shopping and about to light the tree. We, on the other hand, always seem to just be keeping up. I wonder which is more stressful . . .

There’s been a heaviness around me the last several days. I guess we all have periods of light-heartedness (oh, I could use a good laugh!) and then moments of burden. We’ve had friends going through diagnoses, treatments, pain, and family members dealing with sickness and losing loved ones, and one of our principal’s battling cancer, and the shock of a child at our daughter’s school deciding to take her life. I’ve also had the receptionist at Vanderbilt Medical Center and a store clerk share with me their extensive health problems that had me wondering how they do it day after day. It has been a period of one distressing story after another. Even as people of faith, it is sometimes hard to stay positive. At least our country is running smoothly and the world is at peace. 😉

So, in our little world, things are relatively okay. We are so blessed in so many ways. Our kids are in three really different phases in elementary, middle school and high school. We are constantly thinking on our feet and switching hats as to which parenting style is appropriate at 7 versus 15. Sometimes we forget grounding doesn’t work for our 1st grader and time-out doesn’t work on a teenager. And what do you do when you forget what rules you made about Friday night, BUT they remember exactly what you said and will hold you to it. . .

We took our first family vacation since June of 2016. It was a nice, relaxing trip to the panhandle of Florida.  It was unlike what I used to experience, but still such a wonderful change of scenery. I enjoyed the balcony, going out to dinner and getting to the beach a couple of times for sunset. I’m still on oxygen 24/7 and my endurance is short. So, I’m unable to walk the beach or bike with the family. I’m also not supposed to be in the sun, so that makes beach trips interesting. Despite those restrictions, I did read half of a novel which I haven’t done on vacation since becoming a parent. We all got some good rest and quality time together.

I’m on my 5th month of taking a clinical drug trial medicine for my Graft Vs Host Disease of my eyes and lungs. The bottom line is that I’m basically stable, which they consider a good outcome. I have a severe obstruction of my lungs. I test at 22-24% of my expected forced exhale volume. Which means I don’t have much room for inhalation, so that’s why I can’t breathe well.  However, my MDs are hopeful that I’ve bottomed out and that with much time, I’ll see some improvement. I try to stay positive even when I can only do short activities here and there, but it could be worse, and I’m always grateful to be cancer free.

I developed cataracts on my eyes from the years of prednisone, so I’ve had one eye operated on 2 weeks ago and the other will be lasered on Tuesday. What a difference! It is like going from substandard to high definition vision. My eyes will continue to need the scleral lenses for moisture because the GVHD has caused extreme dryness.

With all the distressing news and rising anxiety, I know that it all comes down to prayer. There’s not much, if any, control we have in this life. I’m learning to pray and let God take it. But sometimes I want to hold on to it and knead it for a while. The Bible tells us to worry about nothing and pray about everything. Phillipians 4 6-7.  I must try to surrender to this every day.

2 great songs:

I’m not sure where the time has gone, but I can’t believe that I haven’t written since my December discharge from the hospital.

The few months around the holidays and after are a bit of a blur, and I’m thankful that they are. Next to the fear of a cancer diagnosis with an unknown prognosis (I’ve been in remission for 2 years now!), these last months have been the most uncertain and harrowing. It is hard to put into words all that has happened, but in many ways it has been harder than the deepest throes of my cancer treatment.

As Jonathan mentioned, I was having increased breathing trouble, coughing, pain etc. I went into Vanderbilt for a lung lavage (wash) to see what microbes may wash up. My “lavage” team  likened it to water boarding – I actually saw the humor in it too, so don’t be turned off – they were a great team. I had chosen this washing instead of another lung biopsy because the previous lung biopsy had ended in a lung collapse and somewhat of a downward spiral.

The results from the wash showed a fungus, aspergillus, had infected my lower left lung. It is something most people fight off naturally but with my continued suppressed immune system and Graft vs Host Disease of my lungs, it easily evolved into a nodule. While admitted, they began IV treatment (as Jonathan also mentioned earlier).

I realized during this hospital stay that I’d never had a full-blown panic attack before – I’ve had anxiety attacks that were scary enough, but these new attacks were horrific. They were happening several times per day, and there was nothing my care team could do except try to calm me down with their words. My mom prayed and held my hand, and some special nurses tried singing to me (sounds crazy, but worked) even if it was, “right now I’m adjusting your pillow . . .”  I was hyperventilating like crazy for minutes upon minutes – maybe 45 minutes, I have no idea. I thought my body was going to give out on me at any time because I was so fatigued and frightened.

Jonathan mentioned a scary moment a few posts back.  I have no memory of it, but he says I said, “I’m dying!” and then I immediately went stiff and my eyes were wide open. He called for help and a doctor came in and yelled my name a few times and I woke up.

Along with the panic attacks, my medicines were being overhauled and I experienced agitation to the point I finally knew clinically what that word meant. I experienced never-before feelings that I couldn’t live like this.

On top of the mental distress, my body had gone completely weak from the many days in bed. I couldn’t sit up and I could not even move out of the bed to use the bathroom. When I did gather the strength to move to the bedside commode or chair, it would trigger a panic attack – so I wasn’t feeling too motivated about moving. But, I knew I must continue to push myself to make it home and get better.

I was more than thrilled to be discharged from the hospital on March 10th. There is nothing like be disconnected from all of the wires and IVs. Even if I could barely make it to our bedroom bathroom when I got home, I was improving slowly, and that’s exactly what my doctor continues to tell me:  be very, very patient. AND I haven’t had a single panic attack since the hospital.

I had physical therapy and occupational therapy see me at home for more than two months. I continued my 24/7 oxygen and my wheelchair when leaving the house. I barely left the house, but I did need to go to doctors’ appointments at the hospital and I had some sanity outings to the movies and restaurants. I’ve made progress through therapy. I can walk up and down our main stairs, walk laps around our downstairs, do some laundry and some dishes – they are all ordinary things, but exciting to me even if I have to take many breaks.

I began outpatient PT last week.  We are slowly progressing with exercises, but I made a huge accomplishment at my hospital visit last Friday. It had been months since I hadn’t used my wheelchair to make it to my doctor’s clinic, and this time I walked it with resting only one time! While I was there we discussed and I consented to a drug study for a medication that may help with Graft vs. Host Disease, which I have of my eyes as well as my lungs. My special scleral contact lenses have helped me a ton with my eye symptoms, but as soon as my lenses are taken out every evening, I’m back to the dryness and discomfort that leaves me with one eye closed. Thank goodness for the lenses.

We are having a good summer! My parents continue to rent an apartment in town so they are able to help us out with various needs almost every day. Our girls are visiting with their great grandma and great aunt this week on the coast of South Carolina, and our son  is with my parents visiting their home and then off to see my aunt and uncle and my sister’s family in Atlanta. So, lots of good summer activities for them. Jonathan is working as usual and trying to get in a little extra hiking while the kids are gone, and I’m  catching up on my blog :), getting PT, catching up on some paperwork and helping with finances for Jonathan’s business. I think we are all having a nice change of pace for a bit.

Thank you for your prayers and messages. They mean the world to me, and I can’t ever be reminded enough that God has this.

I just wanted to pass on an over-due update. April came back home last Friday. She does feel much better, and is improving daily. The nagging cough has been reduced also. I’ll be back more regularly with updates.