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!
Sunday, June 26, 2011
Thursday, June 16, 2011
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:
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
Thursday, June 9, 2011
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:
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!!
Friday, June 3, 2011
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:
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.
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