Sailors, Saints, & Sinners

Signs of Progress: Latest on Beth

We are profoundly moved and grateful for so many prayers, acts of kindness and generosity, and support as Beth’s recovery continues.  I was overwhelmed by so many heartfelt inquiries and genuine interest over the weekend.
This adversity has definitely been teaching us that God while God values prayer, He especially values persistence and perseverance in prayer (Luke 18:1). Thank you Rock Bridge, family and friends all over for continuing to pray for Beth and our family!! Know and trust that God is working — medically yes, but also in ways that go far beyond the physical healing we seek for Beth.
Here is where we are:

• The latest scan revealed that all of the Epstein-Barr “sites” in Beth’s body are significantly smaller, except a slight increase in the size of a site on her liver (within the test’s margin of error).
  • The doctors are very encouraged and optimistic about these results.  The T-cell therapy is working but it does take time and Beth’s immune system is still not able to fight off the virus on its own.  She will receive at least 2 more doses of EBV-fighting T-cells (apparently T-cells are sort of like highly trained SEAL teams
• We are still in the hospital.
  • Her throat is healing and one scab/sore remains.  As this heals, Beth will be able to eat and drink more and then she should be able to be released. This could be this weekend or the first of next week.
• Will Beth be able to come home in late June, at the post-transplant 6-month mark?
  • While that question is on our minds, the doctors are not discussing it at this point.  Getting home in late June has always been an estimate and somewhat of a moving target.  The doctors’ goal is getting rid of the EB virus and helping Beth’s immune system get to a point of self-sufficiency where she will be able to fight off viruses, bacteria, & fungi on her own and thus be much more protected … and we are not there yet. We could get ‘there’ by late June (pray!), but that is uncertain at this point.
• The Epstein-Barr virus in post-bone marrow transplant patients is very serious … more so than we thought, knew or imagined.  The treatments are complex and take time to produce the desired results.  However, they are working, Beth is fighting, and we are praying!! God is in way more control than I ever knew and God’s love is way deeper than I understood back in November when Beth was first diagnosed … and with His sovereignty and grace at work, our work is to rest.

Seeking to rest,

Matt

The Latest on Beth: Post-Surgery

Beth’s tonsils and adenoids were removed today.  The biggest “reservoir” for the EB virus was there and now it is gone!  The surgery went well.  Beth has a lot of swelling in her tongue, mouth, and throat but she is able to rest.

Beth still has the EB virus in her body, mainly in the abdomen area.  The doctors are hopeful that by removing the largest concentration of it (in her throat area), this will free up her immune system to fight the virus  more effectively in other areas of her body.  Additionally, she is receiving medicine and “T-cell therapy” to further tip the scales in our favor against EBV.

Your thoughts, prayers, texts, Facebook messages, love, and support are so appreciated.  They comfort and strengthen us as we know God in His sovereignty and grace has ordained prayer as a means to receive His mercy and glorify the One in Whose Name we pray.  I know the church took time on Wednesday to pray for Beth specifically.  It worked: the doctors got control over Beth’s pain, she (we) got much needed sleep, and the surgery was successful.

We do feel like we took a step forward today in the fight against EBV and toward recovery.  We still are praying for complete healing from EBV, immune system growth and strength, comfort and rest while recovering from surgery, and continued overall recovery from the entire transplant process.

Update on Beth: Back in the Hospital

Today Beth was readmitted to the hospital (she had been in an outpatient status since mid-January).  We are awaiting some test results but the likely culprit is the Epstein-Barr virus which is causing some intestinal-abdominal problems, including pain and weight loss.  To be safe and to ensure Beth gets fluids and nutrients, the doctors decided to hospitalize her through the tonsillectomy.
So while this feels like a step backwards, we are hopeful this enables her to take lots of steps forward in the coming days.

Prayer Requests:
For EBV to go away and stay away.
For relief from pain and discomfort.
For sleep.
For successful surgery to remove tonsils (scheduled for Friday morning).
For Beth’s graft (new bone marrow) to remain strong and keep producing more healthy cells.
For our friend, Edwin who is in serious condition (you can read his Caring Bridge update here).

Lastly, we continue to pray for and encourage prayer for the victims of the terrible tornadoes that struck our area and much of the Deep South a week ago.

While we hurt, we rest in God’s Sovereignty even in the midst of suffering, the overcoming of evil on the Cross, the communion we now have with God in Christ, and the hope of heaven.

A Blog to Catch-up

So much has happened in the past 5 days that I felt like a quick blog just to catch-up would be worth it.  From storm relief to the death of Osama to “How is Beth?” and the launch of a new series … here goes:

STORM RELIEF
The loss and grief is almost hard to bear, especially when this is home or so close to home.  Please continue to pray for God’s comfort, strength, and hope to be alive in these affected areas.
The response of supplies and volunteers (and the necessary coordination efforts) have been amazing. Rock Bridge, we are BEING the church.  You can stay updated via our web site and Facebook pages.

OSAMA’S DEATH
This blog post by Pastor J.D. Greear is worth the read.  ”Thinking About Osama”

NEW SERIES: MODERN FAMILY
It appears Part 1 of this series struck a nerve in our church.  I’m praying for all the conversations taking place right now, asking God to bring clarity and courage into families, marriages, and singles.  I’ll address some questions that have already been raised at the start of Part 2 this weekend.  This is a great series to invite a guest and to make sure your WHOLE family is in church! Please pray that God’s Word is made clear and God’s Spirit works in all our lives.  I know some of what we have (and will) cover will be uncomfortable and challenging at times; however, if we keep our eyes on God, lean into His grace, and follow Him no matter what … it will be worth it!!

HOW IS BETH?
Still fighting the Epstein-Barr Virus which at times makes her very uncomfortable.  We think the doctors will remove her tonsils on Friday since the bulk of the infection is in that area.  We need prayer for healing, for comfort, and for strength.  Someone called me several months ago and quoted a Scripture in a voice message to me that has been the basis for how I pray for her.

Isaiah 41:10-13 {NIV}
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. “All who rage against you will surely be ashamed and disgraced; those who oppose you will be as nothing and perish. Though you search for your enemies, you will not find them. Those who wage war against you will be as nothing at all. For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.

Monday “Randomness” and An Update on Beth

• Always love hearing follow-up stories from Easter weekend.  Praise God for life change, for people returning to Him, for passion rekindled, for Good News proclaimed and received!!
• Thanks to all the volunteers who helped make this weekend happen.
  • I also want to thank our amazing staff team … your passion, work ethic, love for Christ and His church is a testimony to the worth of our great God. I love serving Him with each of you!!
• Got to baptize my niece Saturday … very special.
• Praying for God to use our next series, Modern Family. It starts THIS weekend. Who will you bring with you?!?

An Update on Beth:
The Epstein-Barr Virus (EBV) is still present and problematic. Beth will continue to receive treatment this week in hopes that real progress is made by Friday.  This virus is obviously a very real obstacle and complication in Beth’s recovery.  We would very much appreciate specific prayers against EBV, for full recovery, and just for rest.
Because EBV continues to linger and complicate things, we we have postponed the boys’ trip to NYC (rats!).

HE IS RISEN! HE IS ALIVE!

Update on Beth

Beth had the 90 day post-transplant bone marrow biopsy last week and the results are great!! Leukemia is in remission and the new marrow looks good.

However, the Epstein-Barr virus continues to linger, mainly in Beth’s throat area.  As a result, the doctors want to do another PET Scan to make sure the virus has not spread to any other areas of her body and then surgically remove her tonsils since this is where the virus seems to be “lodging”.  We think the surgery will be either Friday or Monday.

We may have to postpone the boys’ trip to NYC as Beth recovers from surgery.

Your prayers are appreciated greatly–

• Thank God with us for the positive biopsy and the absence of leukemia in Beth’s marrow/blood.
• Seek His sovereign protection and grace to fend off the EB virus.
• Ask for safety and success during surgery … and for a speedy recovery!

The Latest on Beth

{I’m sorry for the major blog outage this week. Back up and running now!}

We continue to be blessed so much by your love, prayers, and genuine desire to know how Beth is doing.  Thank you!! God continues to use His church body to strengthen and comfort us.  Here’s the latest on Beth:

• She has been negative for the “EB” virus for her last several lab tests.
• The nasty skin rash she had is virtually gone.
• She is feeling the best she has felt in a long time.
• She has even started a blog!!  You can read her first two amazing and beautiful posts below:
  • A Positive Perspective on Cancer
  • Things You See From Plane Windows

So at this point we are winning, still fighting, but winning … still in the woods but starting to see more light breaking through in what has and will continue to be a long journey of recovery.  But we are deeply grateful for where we are.

Some other questions:

• When will Beth get to come home?
  • Right now the doctors are sticking with 6 months from transplant which equals late June.  They are looking for a specific number of infection-fighting “T-cells” to be present in her blood.  This number is typically reached about 6 months from transplant.  Currently, she has a little less than half of the number she needs to have before the doctors feel it is safe for her to be around crowds of people and “away” from the immediate reach of the hospital. {Pray for T-cells!!!}
• Can the boys (our sons Eyasu & Abreham) visit Beth?
  • We hope to bring them to NYC soon.  The doctors want to wait until cold & flu season is over.  Someone did give Beth 2 teddy bears with our boys’ voices recorded “in” them.  Abreham is saying “Ma-ma” and Eyasu is saying, “I love you Mommy!!”  She uses Skype/FaceTime to talk to them on video.
• What can Beth do?
  • She must stay in our apartment or she can go outside for walks but no crowds, no stores, no theaters, etc. She is walking 25-45 minutes a day (weather permitting).  We were also able to order NY brick oven pizza (delicious!) from a restaurant that works with the hospital and takes the necessary precautions for immuno-suppressed patients.  This was a real treat and blessing … first “real” pizza in months
• How often does she go to the hospital?
  • She goes 2-3 days per work for blood work, doctor examination, and to receive an anti-fungal drug via IV. She must take this while she is on steroids (steroids make fungi grow) as a preventative measure.

Update on Beth: Still Fighting EBV

Today Beth was once again positive for the Epstein-Barr Virus (she was negative late last week).  Her body is obviously fighting this infection but because her immune system is still “young” and not fully developed, the virus is not going away quickly or easily.

Most adults (95%) carry the EB virus, but their “T-cells” keep the virus inactive.  In Beth’s case, she has very few “T-cells” to fight off this virus since T-cells tend to develop several months after transplant so the virus is “active” in her blood (pray for more T-cells!).

The doctors still hope her body can fight off this virus naturally and without treatment; however, they are close to giving her a special medicine to kill off the EB virus. There are some potential risks with this drug but the rewards far outweigh risks.

Prayer Requests:

• For EB virus to finally be eliminated.
  • Specifically, pray for Beth’s immune system to overcome and defeat the virus.
  • However, if medical treatment is necessary, pray it works and pray for no side effects.
• The past 3 weeks have been very “up and down” with several “bumps on the road to recovery” (that’s why Beth has been a little absent on Facebook, tweets, texts, etc.). Please pray we just start moving forward again with recovery!
• Pray for our friend Edwin, who is hospitalized for “CMV” (another type of virus transplant patients are susceptible to).

And THANK YOU so much for the prayers, cards, messages (Facebook, tweets, texts), and gifts … God really does comfort and strengthen through His people, the Church!!

An Update on Beth: Prayers Needed

This week we learned that Beth’s blood work showed low levels of the Epstein-Barr Virus (or EBV).  This is the virus that can cause “mono”. About 95% of adults carry the EB virus but their immune system keeps it from advancing or making them sick/symptomatic.  However, after a Bone Marrow Transplant the immune system has to develop and produce new “T-cells” (the specific type of white cells that work to fight infections).  T-cells take time to grow and mature in order to successfully fight infections (one of the many reasons Beth has to stay in NYC, near the hospital, and be checked 2 times a week by her doctors).

Because Beth’s immune system is not fully developed, her body’s ability to fight this virus is significantly reduced.  This virus can even enter certain organs (usually throat area and lymph nodes). They will be doing a “PET” scan tomorrow to check Beth’s organs for any signs of infection.  The doctors are confident that they caught this very early and have several options for treatment but it still is another “battle” for Beth to fight physically … for us to join the fight in prayer.

Prayer Requests:

• Beth’s immune system is producing T-cells (Praise!); pray that these cells can successfully counteract EBV and no “treatment” is needed!
• A clear PET scan tomorrow: organs to stay healthy.
• Our friend Edwin who is post-transplant and also fighting a virus infection.

Thanks so much for your prayers!! We continue to need them and rely on them to help us in this long fight.

An Update on Beth: Remission!

Today Dr. Boulad called with the results of Beth’s latest bone marrow biopsy:

• Her bone marrow is 100% donor.  The doctor called it “pristine”.  In other words, there is no evidence of any leukemia cells.
• There are no chromosome abnormalities in her marrow.  Chromosome abnormalities are part of the Fanconi Anemia disorder that leads to bone marrow failure.
• Beth is now in “remission” from leukemia.

We are so thankful and humbled for this grace from God!

Prayer Requests:

• Continue to pray for Beth’s immune system to strengthen and develop.
  • Specifically, pray for T-cells and B-cells (2 specific types of while blood cells).  These are the last cells to develop after transplant and critical to immune function.  They typically first appear about 3-5 months after transplant.
• Pray for protection against Graft Vs. Host Disease and infections.
• Pray for our friend Edwin.