We’re Going Home!

It’s about 2 p.m. Atlanta time, and we’re about to be discharged!  We entered the hospital on April 1st, and now 1 month later, WE ARE GOING HOME!  Yeah!

Bethany still has a long road ahead, but she is well enough for us to go home.  We are all so excited!  Thank you for praying Bethany back to good health.

We’ll still be coming back to Atlanta weekly for Bethany’s chemotherapy, but Bethany is making good progress with both her cancer treatments and her treatments for her liver rejection.  Bethany tested negative for the virus responsible for the lymphoma on Monday.  Yeah!  Big praise to God!  

Bethany’s liver numbers continue to improve daily!  She is still testing positive for CMV which means that she will remain on iv anti-viral medication for at least the next 4 weeks.  Please continue to keep all of us in your prayers.  We still have a lot of treatments, travel, and testing in our immediate future.

How to pray:

1. Please pray Bethany will continue to be EBV negative.
2. A recent MRI showed that Bethany’s growths are reducing.  Yeah!  But, please continue to pray these will continue to reduce, and that they won’t cause perforation of any of Bethany’s organs (not likely, but possible).
3. Pray for the entire family as we all begin to live under the same roof again.  We hope to get Jonathan from Angela’s mom in the next day or two.
4. Pray for rest for everyone
5. Pray Bethany will not get any infections or illnesses while we continue chemotherapy.
6. Pray we won’t have anymore causes to have Bethany admitted to the hospital (there are too many possibilities to even mention).  Just pray for great health.
7. Praise God for His goodness and care!

We love all of you, and we are so thankful for family and friends who have stood up to help us throughout this journey.

Have a blessed day, and we hope to see you soon!
Taylor, Angela, Bethany, and Jonathan

Update: April 24th, 2014

Not a lot to report today.  No tests, lots of iv medications, and a little mischievous fun in the afternoon.

The Good:  I think Bethany is holding her own.  She has been fever free for several days.  Her liver numbers improved again today, and her hemoglobin and white count improved too.  Bethany also got a nice visit from Lancelot, one of the hospital golden retrievers.  Bethany also has eaten better today (main because I twisted her arm all day to eat more and better). As a result, Bethany hasn’t had problems with her head hurting as much today.

The Bad:  Another sleepless night.  We were both up much of the night because of all of Bethany’s iv medication.  The nurse was in the room as least every 40 minutes.  We’ve talked to the doctors about this and we are working on getting this fixed.  Please pray for uninterrupted sleep tonight.  

Bethany’s platelet count continues to fall.  It had returned to normal, but started to fall again a couple of days ago.  Bethany’s immunoglobulin has fallen because of the chemotherapy.  Because of this, Bethany will get an infuse of immunoglobulin tomorrow.

Bethany also continues to have high blood pressure.  She’s currently on 4 different blood pressure meds to help, but she’s still running around 150/94.  Overall, Bethany continues to just feel bad.  She’s very tired, achy, and dizzy.  Please pray she can get back to feeling well.

The Ugly:  This morning at 7 a.m., right after the nurse finally left Bethany alone, construction workers began demolishing the floor directly below our room.  We thought a bomb had gone off under us.  Bethany’s bed began to shake and rumble, and then the hammers began.  This went on all day!  It finally stopped about 6 p.m.

Finally, we are currently sitting in an 80+ degree room because the air conditioning has stopped working in our section of the hospital.  We are literally sweating.  They’ve got maintenance working on it, but it’s been this hot for about 4 hours now.

Thanks for the continued prayers.  Have a great evening!  We love you, and appreciate each of you.

In His grace,
Taylor, Angela, Bethany, and Jonathan

Update: April 23rd, 2014

Bethany has had a much slower day.  She has napped throughout the day which has been good because she is so tired.  We did get down to the library and the garden for a little bit this afternoon. 

Bethany really isn’t feeling well.  We’re having issues with her blood pressure, she continues to ache all over, and currently she has a horrible headache (I’m talking turn off all the lights, stick your head in a dark, quiet place, and hope to die kind of headache).  Her lab work this morning showed pretty much no changes.  The current plan is for Bethany to remain here until at least next Wednesday.

Several praises and thanks.  Bethany had a special visit today for Lynn Clanton!  Thank you so much Lynn!  That was huge for you to drive over to see her.  She really enjoyed seeing you.  Bethany has also received many thoughtful texts and calls from friends and family.  Thank you all for the encouragement!  We love you!  Keep up the great work of prayer and encouragement.  That’s about all the news for today.

Blessings,
Taylor, Angela, Bethany, and Jonathan

Update: April 22nd, 2014

Today has been a very long day for Bethany.  She had an ultrasound and liver biopsy along with her chemotherapy which is still going even now.

This morning’s lab work showed that all of Bethany’s liver numbers increased significantly.  Two of her liver indicators increased by a factor of 10, and the other two increased by a factor of 3.  The biopsy showed that Bethany has begun to reject her new liver.  We can fix this though the solution can complicate her cancer therapy.

Starting tonight Bethany is being put back on immunosuppressants to stop her from rejecting her liver.  She will receive a bolus of solumedrol (iv prednisone) for 3 days, and she being put back on a small dose of prograf.  The doctors are also putting her back on two different antibiotics and an antifungal medication.  Bethany has continued to run a low grade fever today, and she still feels awful.  

How to pray for Bethany:

1. Pray God would completely eradicate the cancer.  We are making good strides in this direction.  Praise God!
2. Pray that we can halt this episode of liver rejection.  This rejection has really complicated things a lot.  It complicates treatment not only for now, but also for future treatment as well.
3. Pray for Bethany’s spirits.  She is really tired physically, but also emotionally.  She is so ready to be home and be normal.  We’re going on 4 weeks here, and even if she felt like it, we have been told explicitly that she can’t leave the hospital grounds.  We’ve done every imaginable thing available here at least 10 times, and we’ve gone everywhere on the hospital grounds at least 2x’s per day for the past 22 days.  Bethany could really use some good news and encouragement.  Please pray in this light.
4. Pray that whatever infection that keeps causing her to run fevers to go away.
5. Pray also that her flu like aches, headaches, and backaches will go away.
6. Pray that her medicine schedule can get back to a good schedule.  Because of her tests today, all of her medications are all off.  This means we will most likely be up all night giving her iv medication.
7. Pray for good restful sleep for Bethany.
8. Pray for Jonathan and my parents as they help him with school this week and care for him.  I think they are all enjoying each other.
9. Pray for Angela since she is home in Birmingham alone.
10. Pray for me to get out of the room some even if it is only for a short walk.  I’m really in need of some good exercise.
11. Pray for Bethany’s doctors as they continue to try and balance Bethany’s liver care with her cancer care.
12. As you pray, please give God great praise for His mercy and goodness.

We love each of you and appreciate your continued support as we walk this hard road together.  You are part of our story, and we are so thankful that you have chosen to walk it with us.

In His grace,
Taylor, Angela, Bethany, and Jonathan

Update: April 21st, 2014

Many updates:  

• Bethany’s white count and hemoglobin improved again today.  Her platelet count is now in the normal range.
• Bethany’s liver numbers have turned in the opposite direction.  Specifically, her GGT has risen to 540 in just two days.  Because of this, the liver team is concerned that Bethany is having a rejection issue with her liver.  Therefore, Bethany will undergo another liver biopsy in the morning.
• If the biopsy shows rejection, this introduces complications with Bethany’s cancer treatments.  Rejection episodes are handled with heavy immunosuppression.  One way of treating Bethany’s cancer is by removing all immunosuppression.  Please pray that Bethany is not rejecting her liver and that the doctors can discover another reason for her elevated liver numbers.
• Finally, Bethany’s temperature returned this afternoon.  She’s currently running a fever of 101.5.  She really hasn’t felt well today.  She has been shaky, dizzy, and achy all day.  Please pray fervently for her fever and for the shakes and dizziness to go away.

Good News & Praises!

Bethany’s CMV and EBV have both come down significantly!  

• Her CMV dropped from 19112 to 830!
• Her EBV dropped from 9129 to 1956!

Neither of these numbers are normal but they are much closer to normal!  Praise God!

Please continue to pray for these numbers to continue to drop.  We also really need to see Bethany’s fever to go away and stay away.

Even though Bethany felt so bad today, we still managed to get out of the room for awhile today.  Bethany was able to make some crafts and we walked around the gardens several times.

One last praise.  Today is Bethany’s five month anniversary since receiving her new life giving liver!  We celebrated by ordering some Papa John’s Pizza, Bethany’s favorite!

Again, thank you for your generous prayers and notes of encouragement.

In His grace,
Taylor, Angela, Bethany, and Jonathan

Resurrection Sunday Update, April 20th, 2014

Bethany and I have had a good day today. Her white count, platelets, and hemoglobin levels have all continued to improve. The doctors still believe we will come home Wednesday. Please pray this will happen. We are all ready to be home.

Today we attended a worship service in the hospital chapel, took a secret outing, visited with my brother’s family, did an Easter craft and hunted Easter eggs, and then took another secret outing where Bethany happened to find some cotton candy which she promptly ate it all up. Last night we did not sleep well because nurses kept coming in and out of the room. Hopefully tonight that won’t happen. Please pray for a good night’s sleep.

Bethany continues to have bad headaches, backaches, and overall body soreness (i.e. – flu like symptoms, which is very common with CMV and PTLD). Please pray these symptoms will improve.

Finally, today we removed Bethany’s iv antibiotics. Yeah! The flip side is the last time we did this Bethany ran fevers for the better part of 8 days. Please pray Bethany’s fever will not return. She has now been fever free for about 48 hours. Praise God.

Thank you everyone for the encouraging words, prayers, and calls. Please keep them up. They are making the difference.

Today is Easter, and our family has celebrated it as many others have. It’s been a little different this year. Angela is in Birmingham, Jonathan is with my parents, and Bethany and I are in Atlanta. Not my preferred way of celebrating, but God is still good. This past year our family has celebrated almost every holiday at the hospital or the ER and we’re not the only ones. Each holiday, my heart has been burdened. I look and see those Jesus saw, the lost, the weary, and the heavy laden. Jesus promised that He would give us rest if we would come to Him.

Spending holidays in the hospital is a real perspective changer. While we were here in Atlanta over Thanksgiving and Christmas 3 children we knew went to be with the Lord. Even today, a huge family has been in the waiting room on the 6th floor waiting for good news. Unfortunately, good news wasn’t what they received.

I am so thankful for the doctors, nurses, and volunteers who have given of themselves today and many other holidays to try and make a child’s holiday a little more bearable even under hard conditions. Many times today Bethany and I looked at one another without talking and just hugged. We miss our family. It’s just not the same being a part, but our hearts do overflow with thanksgiving because of the generosity and kindness of others. These are the ones who give a cup of cold water in the name of Him who died and lives again! Praise be to His name! He is RISEN!

Happy Resurrection Day! Because He lives, we can face tomorrow! Because He lives, all fear is gone! Because He lives, we will live too!

In His grace because He LIVES,
Taylor, Angela, Bethany, and Jonathan

Great News! Praises!

Bethany has no cancer in her bone marrow!!!

I just finished talking with Bethany’s oncologist, and she said that Bethany’s bone marrow is completely clear of any cancer.  This is very exciting and awesome news!

The pet scan had shown some possible cancer in the marrow.  The pet scan results along with her platelet, hemoglobin, and white blood cell counts being down painted a picture of the cancer being in the marrow too.  This clear biopsy rules that out and leads us to believe that the CMV is the real cause of Bethany’s low blood counts.

So, your new prayer matching orders are:

1. Praise God that the cancer is not in Bethany’s bone marrow!
2. Praise God that Bethany’s fever has come down!  Bethany is still likely to run fevers over the next week or so.
3. Please continue to pray that Bethany’s body will fight off any infections on its own.
4. Pray that God will eliminate the CMV virus from Bethany’s body.  The CMV is allowing the EBV to run rampant.  By eliminating the CMV, this should help us to cut some of the EBV’s fuel source (these are my metaphors, not the doctors).  The EBV is the source of the PTLD (Post Transplant Lymphoproliferative Disease).
5. Pray that God will eliminate all cancer from Bethany’s body.  The pet scan did reveal many areas of concern besides the GI track.
6. Pray that God will allow Bethany to tolerate the chemotherapy.
7. Pray for Bethany to feel better.  Bethany feels awful right now.  Her head, back, and stomach all hurt.  Overall, she just does not feel good.
8. Finally, pray believing that God HAS healed Bethany.  Scripture teaches that if we ask believing, then we already have what we have asked for.  God has already accomplished all things on our behalf.  Now it is a simple matter of faith.  Do we really believe God or not?

Also, when you pray, please do not pray “if it be your will” in a similar fashion to Jesus’ prayer in the garden.  I’ve thought hard about Jesus’ prayer in the garden.  His prayer was a very specific situation.  He knew that it was God’s will for Him to die on the cross, and yet He prayed for God to remove “this cup” from Him.

Jesus’ prayer for the removal of the cup was not God’s will.  This prayer was to demonstrate two things:  Jesus’ total submission of His will to the Father’s, and Jesus’ own humanity in the face of the enormous burden of the cross and His subsequent separation from the Father.  Jesus knew His death on the cross was God’s will, and therefore, when He spoke the words “not my will, but yours, be done” this was not spoken by Jesus to teach us how we should pray for God’s will to be done in a situation in which God’s will is unknown to us.

I have often heard people pray in this way as they prayed for the sick or dying.  I do not believe this is biblical.  When we pray “not my will, but yours be done” or “if it be your will,” many would believe that we are submitting our will to that of the Lord’s.  But, since in the matter of praying for the sick we truly don’t know the Lord’s will, we are mostly showing our lack of belief that God can or will heal.

Most of us pray this way not out of submission to God’s will (since we can’t know His will in these circumstances), but instead to hedge our bets in case the sick person does not get well.  If recovery doesn’t happen, then it’s not because we lacked faith or that God was unable to heal.  Instead, we just chalk it up to God’s will.

Think about it.  Is there another New Testament example of anyone praying in this same fashion?  Praying “not my will, but yours be done” can only be appropriately applied to a situation in which we unquestionably know what God’s will is and we are praying contrary to that known will.  Since none of us can know absolutely God’s will in regard to the healing and recovery of a sick person, then we should never pray “if it be your will” or “not my will, but yours be done.”  This only demonstrates our unbelief and fear that God can’t do that which we are asking Him.

Jesus said,

12 “Truly, truly, I say to you, whoever believes in me will also do the works that I do; and greater works than these will he do, because I am going to the Father. 13 Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. 14 If you ask me anything in my name, I will do it. – John 14:12-14

The keys to understand what Jesus says here revolves around believing, asking in Jesus’ name, and asking.  Further, the purpose for Jesus answering these requests is so that “the Father may be glorified in the Son.”  So, when you pray, pray believing with great faith and hope.  Remember, God is faithful even when we are faithless.

Thanks again for all your prayers and encouragement.  Excuse the long excerpt about prayer.  I am probably mostly speaking to myself first.  God is so good, and He is so much more able than we believe Him to be.

In His grace,
Taylor, Angela, Bethany, and Jonathan

Finished with Bone Marrow Biopsy:

I’m sitting beside Bethany waiting for her to wake up from her bone marrow biopsy. She did well, but will most likely be sore for a day or so. We should hear results by tomorrow. Bethany’s fever broke around 4 a.m. after spiking close to 104. When we came down for the biopsy, her temp was normal! Keep the prayers up! Pray for her white blood count, hemoglobin, and platelet count each of these fell overnight. Thank you!

Completed first round of chemotherapy!

Bethany just finished her first round of chemotherapy. We started around 5:30 p.m . yesterday, and she completed it at 4:00 a.m. this morning. We have now started her blood transfusion. Next she’ll be taken for her bone marrow biopsy around 8:30 a.m. It’s been a long night. Bethany has been running a fever of 104 most of the night. Thankfully right now it’s finally come down some (101.5). Please keep the prayers up. We really need to see this fever leave. Thanks!

Big Update and Lots of Prayers Needed:

We’ve had a lot of activity today.  We have seen Bethany’s liver doctor, Dr. Romero, the pain management team, the oncologist, the infectious disease team, and the transplant team; not to mention, the chaplain, the child life person, and the psychologist.

I have a lot of information to communicate.  The best way to share this is in bullet form, so here we go (If you’re reading this on facebook, the bullet points will not show up.  Go to the Caringbridge page or my blog to see this update with the bullet points.):

• Bethany had her MRI last night which showed no change from last Tuesday.  We were hoping to see the reduction of the growths.
• Bethany’s CMV and EBV numbers have increased slightly.  We hoped these numbers would decrease significantly since we have removed Bethany’s immunosuppression.
• Because there is no reduction in Bethany’s CMV or EBV and the growths have not gotten smaller, we will now proceed to treating the cancer with more aggressive therapy (i.e. – chemo).  We might start this therapy later today (Tuesday) or tomorrow morning (Wednesday).
• We are also dealing with several complications:
  • Bethany’s Hemoglobin and white blood cell counts are both very low (Hemoglobin – 7.4 and white blood count – 850).
  • To counteract Bethany’s low hemoglobin, she will receive a unit of blood in about an hour.
  • Bethany will also receive an infusion of IVIG.  This is an infusion to help with her white blood cell count.
  • Further, Bethany will undergo a bone marrow biopsy in the morning to see if the cancer has spread.  This would help explain the low white blood cell count and the low hemoglobin too.
  • It would seem that Bethany is not responding to the anti-viral medication meant to treat CMV.  The infectious disease team has recommended a different iv anti-viral medication.  The CMV is making it more difficult to treat the EBV and the PTLD.  It would really help the EBV and PTLD if we could get the CMV under control.  Further, the CMV is complicating our understanding of Bethany’s low white blood cell count.
  • Finally, because Bethany’s white blood cell count is so low, she is at a high risk for other infections.  This can become a very serious problem and complication in treating Bethany’s cancer.  Bethany continues to run a high fever (102-103).  We really need her body to start fighting off these infections.

As you can see, Bethany has a lot on her plate right now.  Keep the prayers and encouraging notes coming.  For the time being, we will be staying put in Atlanta for at least the next 2 weeks.  I guess there is a chance that we’ll be home for Easter, but we know it’s more important to get Bethany healthy and stable.

How to pray:

1. Healing!  No more temp and lower EBV and CMV numbers.
2. Pray specifically that the chemo therapy will kill the cancer.
3. Pray Bethany will respond to the new anti-viral therapy and that the CMV will go away.
4. Pray for Bethany’s bone marrow test tomorrow.  Pray specifically that we won’t find any cancer there.
5. Pray that Bethany won’t need any more blood transfusions.
6. Pray for Angela and I as we attempt to figure out how to manage everyone’s schedules over the coming weeks.  We really don’t know how long we will need to be here in Atlanta.
7. Pray believing that God has already heard our prayers and that He is healing Bethany.
8. Pray praising God because He is going to receive honor and glory through this no matter what.

Thank you for your interest in Bethany and our family.  Thank you for loving us and praying for us.  We love you too, and know that God is using this to grow us and draw us to Him.  Please use this and every opportunity God brings you to tell others of HIm.

Sorry for such a long update.  This one is kind of important since so much has happened today.  Bethany’s doctor told me today that things would most likely get worse before they get better, but he does expect them to get better.

We love each of you, and keep you in our prayers.

In His grace,
Taylor, Angela, Bethany, and Jonathan