Sailors, Saints, & Sinners

Open Letter #2: Beth is home and Romans 8:28

On November 30, 2010 I posted a blog detailing a major change in our life and ministry as my wife began to fight leukemia through a bone marrow transplant in New York City. With unbelievable joy and gratitude I can share that Beth is now officially and permanently back home with our family. Beth must remain fairly isolated as flu season approaches and her immune system continues to mature.  She will still need to be seen by the transplant team in NYC every two weeks. But her leukemia is in remission, the post-transplant complications (mainly the Epstein-Barr virus) is all but gone, blood counts are good, and her strength is returning.

First, we thank God for walking with us through this time, providing amazing doctors and their wisdom to battle a complicated and dangerous condition, and loving us through His Word, His Spirit, and His church.  When we first received the devastating diagnosis of leukemia, Beth said that “the greatest miracle is salvation” which is so true. To know that nothing can separate us from God’s love is unbelievable and a source of constant joy; however, we are recipients of a “lesser” miracle that God did not owe us. So we marvel once again at the mercy and grace of our great God!

Second, we must thank Rock Bridge Community Church and God’s universal church. From Dalton across the U.S. and even into Africa, people have prayed for us. Many gave everything from time to money to ‘sky miles’ to support us.  We would receive text messages, cards, emails, and phone calls in dark moments that provided glimpses of light that pointed us back to hope in Christ.

Thank you for letting me walk with my wife through this time. Thank you for letting me learn the joy of serving my wife in some small way as Christ loved and served us, His church. I missed being there with many of you as you walked through your own valleys but God is so big and His grace is so overflowing, I trust He was sufficient for you as He has proved for us.

Beth’s life verse is Romans 8:28 — “We know that all things work together for the good of those who love God: those who are called according to His purpose.”
This is a dangerous verse (but we know it is true) because when God asks you to believe it as you face extremely difficult “all things”, you have to die to anything but Jesus. But in dying you really learn to live.

Galatians 2:20 — “I have been crucified with Christ; and I no longer live, but Christ lives in me. The life I now live in the flesh, I love by faith in the Son of God, who loved me and gave Himself for me.”

Update on Beth

Overall, Beth is doing much better and feeling much better.  She has had several consecutive weeks of feeling strong and generally good.  We are awaiting an immune function test to see how well her T-cells are performing.

Things on the “needs to improve” list include resumption of normal eating, reduction in throat mucus, and elimination of the last EBV “nodes.

• Eating: She is primarily using the ‘G-tube’ to eat with some attempts to eat normally but throat mucus continues to be an issue. Thankfully, through the G-tube she is getting all the calories and nutrients she needs.
• Throat mucus: After much examination by ENTs, infectious disease specialists, and the transplant doctors the consensus seems to be the mucus is from a fungus that likes to feed on the dead Epstein-Barr tissue which was most concentrated in her throat/nasal areas.  It is improving … slowly.
• EBV: The last PET Scan showed that the “nodes” (or sites) are either gone or significantly smaller but there is still enough EBV present for the doctors to order another round of T-cell treatments (1 dose a week for 3 weeks).

Hurricane Irene is heading for NYC-area this weekend. Beth is not in an evacuation area but they are warning that the city could be without power for several days.

Finally, she will get to come home after Labor Day for about a week (still no crowds, etc.).  In mid-September the doctors will reassess where she stands in relation to EBV and her immune function.
But the biggest and best news for us and the doctors is how well Beth feels and how strong she is — we walked almost 2 miles around Central Park last week! We still have challenges and risks remain on her road to recovery so we remain careful and prayerful … but we are moving in the right direction and seem to be picking up speed!!

Update on Beth: Major Milestone

For months we’ve known Beth’s immune system needed to have “200″ T-Cells to be in the normal range and for her immune system to even be considered  mature enough to protect her against most infections.  Talk of returning home was always conditioned on the number “200″. Specific and frequent prayers were offered with the number “200″ in them.

TODAY WE LEARNED BETH HAS 251 T-CELLS!!!!!!!!!!

Praise God! Praise God! Praise God!
Thank you! Thank you! Thank you for praying so faithfully with us and for Beth!!

We are awaiting a test to determine if all of those T-cells are functioning properly; however, this obviously feels like we are entering the home stretch.  No predictions yet on when Beth can return home … but this is MAJOR MILESTONE.

The Rundown (7.25.2011)

I’m back in NYC for a few days with Beth after spending 2+ weeks at home. Beth & I continue to be humbled and blessed by your prayers and concern. We do feel like the big picture is much brighter as all the major problems and obstacles are resolving (leukemia in remission, EBV in full retreat); there are some lingering throat-mucus problems that cause eating-drinking issues and resulted in the G-tube.  Overall, cautiously optimistic yet prayerfully vigilant!

• The Rock Bridge staff team is simply amazing.  Almost every encounter I had over the past 2 weeks including praise for our staff:  work ethic, passion, leadership, growth, etc.
• Had lots of great conversations about the direction and health of our church.  We are all excited about what we see God doing in us and through us.
  • Biggest area we are working to upgrade is how we connect new people into the church.  Everything from first-time guests and salvation to group involvement and membership.
• I was able to connect with a few of our mission partners and I’m so excited about the “to the ends of the earth” work we get to be part of in our NW GA communities and across the oceans.
  • Our work with Compassion International will continue to grow. 4 Rock Bridgers went to Ethiopia to meet our partner church in Awassa and were blown away by Compassion and by the opportunity we have to do something significant for Christ!
  • The Living Water trip to Honduras to dig a water well was fantastic and another group goes in September. We anticipate 2-3 more trips in 2012.
  • Our Ukraine trip just returned and the initial reports are exciting!!
  • I’m very excited about our work with church planting through Launch Network. With 5 church planting “hubs” (and more to come) across the U.S. we are able to invest resources into planting healthy churches.
    • On a more local level, we can welcome and begin to pray for Wesley Odum and Dynamic Church which will be launching in Chattanooga in 2012.
    • Pray for Terrence Lester as God has called him to plant in Atlanta.
• Above all, I think many of us are being drawn by God to pray passionately, consistently, and specifically for Him to move. We are more aware than ever of our need for Him (apart from Him = nothing!!) and yet His desire to work through His people and churches.

Turning a Corner: The Latest on Beth

Been great to be back home and at Rock Bridge!!  I love our church!  Yet my heart is so with Beth in NYC, and as y’all have again shown me, your prayers are with her and our family in a “big” way.  Thank you so much!!

Beth just finished “Skype-ing” with our boys and she is looking great and feeling stronger.  She has had several good days in a row both in how she feels and what the doctors are observing.  The mucus problem in her throat (which is making eating difficult) seems to be a result of a fungus that took root in the dead Epstein-Barr virus tissues (that thing causes problems even after it dies!).  Thankfully, some infectious-disease specialists were able to pinpoint this likely culprit. So with some changes in her medicines, we are hopeful this latest challenge will be overcome soon.  While we wait, the G-Tube is doing its job so Beth is getting nutrion and feeling better.

So we are cautiously optimistic that she is turning a corner.  Her counts are very strong and there new signs (from her latest labs) that her immune system is maturing and getting closer to full capacity.  However, we are not there yet, we must remain careful and vigilant … but we are very thankful for where we are today

A Hard and Hopeful Week from NYC

Whirlwind. Bitter. Sweet. Crazy. Tough. Long. Emotional. Doubting. Hoping.

That’s about how I would describe this week for our family.

On Tuesday, I flew up to NYC with our boys and our family was reunited for the first time in 7 months.  Beth was thrilled just to watch them play and see how they had grown and changed.

However, Beth was still having trouble eating and drinking.  As the week progressed she grew very weak and tired, requiring IV fluids at the hospital on Wednesday & Thursday.  She started vomiting when she tried to swallow her medicines.  We both realized this had the potential to become serious and that her struggle eating/drinking had gone on long enough. So on Friday morning we made the difficult decision to cut the boys visit short  — I would fly them home, Beth would go to the hospital, and I would fly back to NYC late Friday night.

Beth was readmitted to the hospital Friday afternoon to get an “NG Tube” for feeding (pretty uncomfortable procedure). However, by the time I got back to the hospital around midnight Beth was already feeling and looking much better.

The eating troubles seem to be coming from a severe case of mucus literally streaming down the back of Beth’s throat and the cause is still somewhat unclear, although the doctors believe it is temporary and will resolve.  She will receive a G-tube on Wednesday as part of a longer term/less invasive “eating” solution.

Also, a PET Scan was repeated on Wednesday and the results show that the Epstein-Barr virus is in full retreat.  Most of the “nodes” are gone and the ones that remain are significantly smaller.

So while this week was not what we had hoped for with our boys, we have learned that our perspective cannot be limited to days or even weeks.  And the bigger picture perspective is much brighter: leukemia is in remission, her bone marrow graft is strong, EBV is going away, she is finally getting the nutrition her body needs, our boys are doing great, and … most especially, the tomb of Jesus Christ is still empty!!

Bringing the Boys to NYC!!

This week we’re bringing the boys up to the “Big Apple” to see their mommy!  I’m so excited for the boys and for Beth who has not seen them in 7 months!! Our incredible doctors have even worked Beth’s check-up and treatment schedules so our time at the hospital is minimal.  I’m flying up with the boys by myself so I’ll be in man-to-man defense in the ATL airport and at 35,000 feet!!

Beth is improving but it is slower than we expected. The procedure to clear out her throat last week has helped but eating is still slow.  The “stuff” they removed from Beth’s nasal passageways revealed a fungal infection so the doctors added a high powered anti-fungal medicine.  On the positive side her pneumonia is gone

Dr. Boulad explained that healing and recovery takes longer in older transplant patients and especially in those who have Fanconi Anemia.  She is going to undergo some more treatment to hopefully knock the rest of the EB virus out and then the doctors will be in a position to evaluate where we are overall in post-transplant recovery.  Her graft (new marrow) continues to be strong, it just takes (more) time for the immune system to mature to the point where it can completely protect Beth from infection.

Thanks for your continued prayers and support!

Update on Beth

Today is a long day at the hospital for Beth to get treatment for the EB virus and a breathing treatment to prevent certain types of pneumonia.

Our biggest challenge of late has been eating and weight loss since the tonsil surgery. Food is sticking in Beth’s mouth and throat areas, making eating frustrating and somewhat futile. The doctors were/are considering putting in a “G-tube” device into Beth’s stomach (bypassing the throat area) to increase her caloric intake and weight.

However, yesterday we met yesterday with an ENT surgeon.  He looked in Beth’s nasal passages and throat and found a lot of “rubbish” (I guess that’s a medical term) that he thinks is the culprit for her eating problems. The doctors believe that while the tonsil surgery did remove a portion of the EBV, the virus is still in her throat area and complicating her healing, causing this “rubbish” to build up and linger in her throat area. So on Saturday the ENT is going to clean out Beth’s nasal ways and throat and remove some tissue adhesions/scar tissue.  He thinks this procedure could solve the eating challenge and we can avoid getting the G-tube

Prayer Requests:

• For Saturday’s procedure to be safe and successful.
• For Beth to be able to eat and increase her caloric intake.
• For EBV to continue to go away.
• For protection against any more infections and complications.
• Luke 11:13

Out of the Hospital: Latest on Beth

As we’ve learned bone marrow transplant is a series of steps forward and back with the hope that the overall direction is forward. True to form this week has been two big steps forward and one small step back.  Here’s the latest on my bride:

2 Steps Forward:
#1-Yesterday after 5 weeks, Beth was released from the hospital!  We are thrilled to be back in our “home away from home”.  We are giving her 2 IV medications at home. A home care nurse just trained me to give her these 2 drugs in our apartment.  Good to be out of the hospital
#2-The latest PET scan showed that ALL of the EB virus nodes in Beth’s body are significantly smaller.  The doctors are very encouraged to see that Beth is responding to the treatments.

1 Small Step Back:
The EBV PET scan showed that Beth has a bit of pneumonia in her upper right lung.  She shows no symptoms (no cough, no fever, no sounds that the doctors can hear), but it is there.  She always has some infection in her throat area.  We’re on some powerful antibiotics, and the doctors believe these infections should be gone relatively soon.

Finally, we got the ‘OK’ to bring the boys up to NYC!!  Since we just got out of the hospital, we’re going to take a week or so to get rested, get stronger, and get ready for Eyasu and Abreham. Beth has not seen the boys in person since the first of December and she is ready! Last night we Skyped with them — Abreham said, “I love you” and “Ma-Ma”!!

Prayer Requests:

• For the pneumonia to go away quickly.
• For Beth’s T-cells to increase (the T-Cell level is what determines the restrictions we have to follow such as being close to the hospital, avoiding crowds & enclosed spaces, and a low microbial diet).  As Beth’s T-cells increase, they will be easily able to kill off the EB virus.
• For two transplant friends we met, Kevin (age 19) and Karl (age 14), as they recover from their transplants.
• Soli deo gloria!!

Slowly but Surely: Beth Update

First, we are so blessed to be part of Rock Bridge Community Church. You have loved us, given to us, and prayed for us faithfully during this long and challenging time for our family.  When the Elders first told me that they wanted me to take the month of June off from preaching, I was hesitant. I love studying God’s Word and preaching it.  I love being with the people of my church family. However, I ultimately recognized and submitted to their wisdom, authority, and love for Beth & myself.  They are acting to protect the long-term health of the church and the teaching ministry while protecting me from the long-term dangers of fatigue and burnout (real dangers for any minister under normal circumstances).  Additionally, in God’s providence He has confirmed that June is an important month in Beth’s recovery and healing and I need to be with her as much as possible.

Beth is still in the hospital after 4 weeks but starting to feel much better.  She is working hard to eat and swallow while trying to get the needed calories from drinking smoothies, and shakes.  These are the prerequisites for her release so she does not dehydrate, gets the right amount of nutrition, and can take her medications by mouth.

Additionally, she is still getting treatment for the Epstein-Barr virus on a weekly basis.  A PET scan will be repeated in about a week to determine if further progress is being made against this problematic virus.  Because of the presence of EBV and the effect fighting it has had on her T-cell counts, we do not believe Beth will be home in late June (rats!).  However, we are making progress. Sometimes we take 2 steps forward and 1 step back; sometimes 2 forward and 1 1/2 steps back … but slowly but surely things are moving in the right direction.

Prayer Requests:

• For Beth’s swallowing to get stronger/easier so she can eat & drink enough on her own.
• To be released from the hospital.
• For the EBV virus to continue to diminish and be defeated.
• For us to be able to bring our boys up to NYC in June.