1. Beginning Saturday morning, infection was found around his incision/stitches. Very red, sore. Started treating with IV antibiotics every 6 hrs. around the clock. It was a long stressful weekend. Dad, of course, did not feel well at all. The infection has greatly improved since then. Praise the Lord! He received his last IV antibiotic this morning and will continue with antibiotics given through peg tube to ensure it's gone.
2. Stent was removed on Monday morning. Dad was very worried about this because he can only open his mouth so wide. It's been like this since all of his radiation in 2004. So, when the ENT told him he was just going to reach back in his throat with something like tweezers and pull it out (flexible long tube about 10 inches long) he, of course was very concerned this wasn't an outpatient procedure. So, the ENT was able to pull it out so quickly dad didn't even know it. Mom said he was in pain after, as we can imagine, but it was over quickly. Another answered prayer.
3. Tried grape juice yesterday. He was unable to swallow any. This morning, he had a swallow study done. Same results. (Basically, an x-ray while you're swallowing) So, they found that everything is still swollen. And, some of the liquid went up into his nasal passage. This is going to be a long journey, not just an overnight trip. Please pray that he does not get frustrated but continues to try everyday. The larynx (voice box) plays a huge role in swallowing. Basically it's the lump on the outside of your throat that you see move up and down when we swallow. And, our throat has muscles in it that squeezes our food down. So, that is no longer there. So, learning to swallow with this new throat and no larynx is going to be like learning to walk again with prosthetic legs because the original mechanisms are no longer there. Please pray for complete healing of his new throat and motivation to keep going.
4. Remain positive. So much has happened. So much change. And a long recovery road that will never go back to "normal." But, we praise Him for life and for options. Please pray for him to remain positive and receive encouragement.
5. I have to be honest. I've been fearful, angry, upset, mad, sad, and even grieving at times through this process. Please pray for me, my mom, and my sister as we are caregivers down this recovery road. Especially for my mom. She is AMAZING! I hope I can be half the caregiver/wife she is. A true testament to marriage and my mom's love and respect for my dad.
6. They are supposed to be discharged tomorrow. Mom was told this today. They are both hesitant to go home. Please pray for complete understanding of all the discharge instructions, swallowing exercises, and confidence going home. Please pray for safe travels. And, please pray for restful nights and days for both of them so this road to recovery can begin. He is walking a lot during the day with physical therapy, climbing stairs, etc. Please pray for continued strength.
Thank you for lifting Larry Moore in your prayers.
Sorry it has taken me so long to send an update since his surgery this past Tuesday, August 20.
We appreciate your prayers more than we can ever express. Thank you for lifting my dad's name to our Lord!
Surgery was a very long but successful day. He was almost in surgery 10 hours. We received updates from the operating room every 2 hours. The surgery began with removal of lymph nodes (what he had left) in neck area. This part of procedure took very long because his muscles were so tight from previous radiation. Margins were sent to lab to check that they were clear after this. Then there was the removal of all the tumors, larynx (voice box) and changing his airway to the front of his throat. Then, the removal of his throat. Then, the next Dr. began the throat reconstruction. Tissue was taken from his leg to create a new throat. His begins at the base of his tonge, down to his esophagus. It's a pretty large area.
Now the healing and recovery period has begun.
He, as imagined, had significant swelling and significant pain through that night and into Wednesday morning, but was eventually controlled with the right pain medicines.
He will remain at UAB recovering for 7-10 days following surgery day. Today is day 3.
Specific hurdles to overcome during recovery period:
Days 1-3: No clotting of arteries and veins to new areas of his neck. They monitored this every hour the first 24 hrs, then every 2, then every 4, and so on with a machine similar to an ultrasound machine and you can audibly hear the blood flow. We are almost in the clear of this area. Praise God, he's had no clotting.
Days 4-6: No infection. They give the pt antibiotics during surgery and for the remaining 24 hours. Then they stop antibiotics. This is done in case there is infection from the surgery, it will show up while the pt is still in the hospital and not at home. He is at high risk for this because the length of the surgery, how extensive this surgery is, hospital setting, etc. Pray the Lord protects his body from infection!
Day 7-8. He has a plastic stint in his newly constructed throat that is holding it open like a straw. It will be removed Monday morning. Another huge hurdle is that this new throat has no tears or holes in it. Right now he has 3 drainage tubes around the incision area. On Monday after the stint removal, he will drink grape juice. The ENT that did the throat reconstruction surgery will be watching these 3 tubes for any sign of purple juice. Pray no juice will appear in these drainage tubes!
He started physical therapy the morning after the surgery. Sitting up, standing up, staying out of bed in a reclined chair. Today is day 3, he is not in the bed except to sleep at night. He is doing his exercices PT has shown him to do while in his chair or walking every waking hour. He has not slept during the day since surgery. This is amazing! We praise God for these victories!
When the other ENT saw him yesterday (Dr. Carroll, the one who removes the cancer, voice box, and lymph nodes) he said he was ahead of the curve for most of his pts at this time. He did have a rough morning today. He needed a unit of blood. Dr. Carroll said this was not alarming because knowing how bad his body was beaten down with cancer, he needed the blood. He said the 5th day is usually a hard day. So, please lift him in prayer on Sunday!!!
Please pray for these specific hurdles. He is at high risk for all of them.
Please pray that his spirits stay high as he continues to make gains. Mom did tell us that he is tired of being in his room.
Ultimately, just pray for rest during his recovery: mental, physical, and emotional. This is such a huge surgery and life change with his voice and swallowing. Please pray that his spirits stay high as he is communicating mostly through writing and gestures right now. We praise God that he had an option, not an easy one. So many have no options.
I feel like my dad has gone through the most selfless surgery and experience just for life. I know his grandchildren are a huge factor in his decision and motivation. He went through such a hard treatment schedule in 2004 and has experienced one of the most involved surgeries you can have. I am so encouraged by him. He is a true hero.
My mom and dad have not seen them since the first Sunday in August. We are waiting for more healing to take place before then. They miss them greatly. And, so do the boys.
Thank you all for your prayers, emails, texts, etc. It's so comforting knowing that brothers and sisters in Christ can lift another's name and take it to His feet.
I am humbled by all of you and your care. Please let me know how I can lift your name in prayer as well.
I love each and every one of you and cherrish our friendships,
Thank you all so much for your prayers, calls, texts and emails the last several weeks. I can't tell you how encouraging it is to know so many people are praying and lifting us up right now. Just wanted to send another update. It was quite the struggle to convince CTCA that we needed to leave Wednesday morning to make it to Birmingham in time to see Dr. Carroll at UAB. This was his only chance to see Dr. Carroll before his surgery scheduled for tomorrow, Tuesday, Aug 20. Thankfully we were able to be discharged last Wednesday and Dr. Carroll's office worked us in to see him as soon as we got there. We've decided to go forward with the major cancer removal surgery (total laryngectomy, remove and reconstruct throat, remove and reconstruct nasopharynx -- a 6-8 hr operation). After we saw Dr. Carroll, my dad went home! Praise God! He can relax now in comfort!
My dad had a feeding tube put in last Tuesday afternoon and that went well. He would have needed that anyway to do the big surgery, so he just got it early. He's now up to 6 "feedings" a day and feeling much stronger after getting some nourishment after going so many days without eating while in the ICU. He's doing OK with the trach right now. It's difficult to speak with it, but he can still talk. It takes a full breath to say each word, so any conversation is tiring. Sleeping is hard right now. When I saw him last Wednesday he was very weak, struggling to stand, and very tired. I visited them yesterday and he was walking around well and had so much more energy so that was encouraging.
I think he's ready for the surgery and ready to get this hurdle behind him. I'm sure it's quite scary going into such a major operation. It would be different if it were your knee or your stomach or something else. After the surgery he will have a long road of recovery ahead. He will be in the hospital for at least a week. After that, he will need a lot of speech therapy to learn to use the prosthetic speech devices (there are 2 kinds - one that sounds mechanical that will be a "backup" and a new device that has a more natural voice sound) and also to learn how to "swallow" again with his newly reconstructed throat.
Here are some more ways that you all can pray for us:
1. Pray that surgery goes as planned tomorrow, Tuesday, Aug 20 at UAB (we don't know what time the surgery will be yet, but probably will start in the morning since it will take 6-8 hrs.
2. Pray for the doctors that they will have wisdom, clarity, and skill as they remove the tumors and reconstruct his throat.
3. Pray for my family (my mom, me, my sister, and my grandmother and other extended family) that will be there tomorrow and waiting for good results
4. Pray for the recovery, that it will be smooth, that healing will take place as planned and that rehabilitation will be easy
5. Pray for my dad's energy and perseverance through the rehab process.
6. Pray for complete removal of the cancer so that it NEVER comes back!
I can't express enough gratitude to everyone for praying, sending his name and story to your church's prayer lists, calling, visiting, texting, and emailing. It's so great to hear from friends and family that care during times like these. We serve an amazing Physician that can heal! He is in control and is BIGGER than cancer! We pray that He receives glory through all of this!
Since my initial update on my dad's diagnosis, he has been suffering an extreme sore throat, earache, and headaches. We were able to take our planned family trip to the beach, but he did not feel well nor did he have much energy. But, it was good family time of course.
After much research and speaking with physicians at the Mayo Clinic, and having an extended family friend of ours that works at John Hopkins speak with their head ENT and assured us that he knew William Carroll at UAB and anything he recommended he would agree with.
This past Tuesday-Thursday they had appointments planned for a 2nd opinion at Cancer Treatment Centers of America in Atlanta, GA. They took a chance with a facility that might be able to save his throat and/or voice. After meeting with the ENT on Wednesday, he did tell dad there was a chance he could save both functions. Of course, this option was appealing and wanted to dig deeper. Thursday afternoon, he had a scheduled outpatient lung biopsy of the suspicious spot on his lung. No surgery would be performed before knowing the cancer had not spread.
And, this is my sister's update from that moment on..
Again, please forgive me for the mass email. It's so hard to keep everyone informed and we appreciate your prayers more than you will ever know.
Tuesday, August 13, 2013
It's been a long weekend since I updated everyone on Friday. When I wrote the last email he was getting his lung biopsy. Well, during the lung biopsy, the doctors discovered as they were inserting the tube into his airway, that his airway was very small - about the size of the cord on my computer mouse (can't really think of something else that size). They went ahead with the biopsy and got several good samples. I think we are still waiting on those results. The doctor still thinks they're just inflammation, though, because he coughs and aspirates so much while he's eating that it's probably due to that. Praise The Lord that it most likely hasn't spread! Anyway, because his airway was the smallest the doctors had ever seen, they were scared to remove the tube for fear that his airway would collapse. So they left the tube in and had to keep my dad sedated and on a ventilator until an ENT doctor could come the next day to do a tracheotomy. They had to do this because otherwise my dad would wake up from the biopsy anesthesia and try to cough or grab the tube and they couldn't take that chance. My sister and I went over there Friday afternoon to be with my mom during all of this unexpected surgery and because my dad is now in the ICU.
So fast forward to Saturday morning when the ENT arrives to do the tracheotomy (aka, a trach - a surgical procedure where the doctor creates a hole in the windpipe that goes through the front of the neck through the exterior and that becomes the new breathing passage instead of through the nose - it bypasses the tumors). 9 years ago my dad woke up from surgery with an unexpected tracheotomy. We didn't want that experience to happen again. The anesthesiologist woke my dad up from the sedation briefly to break the news to him and explain what they were about to do. He seemed to understand. The anesthesiologist told us that he was able to rationalize during that conversation but that he would not remember it after he was put to sleep again for the tracheotomy. The tracheotomy surgery went fine but was very difficult for the doctors because of the location of his tumors and how large they've become. After seeing the full extent of the tumors, it was apparent to the ENT doctor that he would not be able to save my dad's voice box as he originally thought. That was disheartening, but helped our decision process since both options/opinions (CTCA and UAB) were now the same. We want to have the surgery done in Birmingham because his doctor, Dr. Carroll, has a well developed relationship with my dad for the past 9 years and because we've learned that being so far away from family when you're in the hospital is very hard.
My dad had a lot of questions after the surgery was over and he finally woke up. From his perspective, they went to CTCA to get a second opinion and run some tests. Then they planned to go home and think over the options before making a decision about surgery. The original plan was to be at CTCA for 2 days and he was supposed to leave last Thursday. The lung biopsy was pushed to Friday and then the biopsy complications occurred and now he's in ICU with a trach. He wasn't in that condition coming in and he really didn't know what happened until he woke up in the middle of it all! He was going to need a trach and a feeding tube after the cancer removal surgery (total laryngectomy, remove and reconstruct throat, remove and reconstruct nasopharynx -- a 6-8 hr operation) anyway, but he thought he still had time before that all took place.
He's been recovering from the trach on Saturday and Sunday. My sister and I left Sunday. Then out of the blue his heart rate sped up to around 164bpm Sunday evening. He had an EKG and an echocardiogram which all came back normal. They chalked it up to stress (which is understandable!). He hasn't done that again since Sunday night. We had hoped to go home soon but he's got to have some kind of nutrition plan in place first. It's been since Thursday evening since he's eaten anything. Since then he's been on IV fluids only. Monday, they were going to do a test with a speech therapist to test his swallowing ability since the swelling around his trach had gone down by then. Well, he failed the swallowing test because of too much aspiration and entering the trach. So, that means he needs a feeding tube. As I'm writing this email, we are waiting for him to have the feeding tube put in.
So the plan from here is to have the feeding tube put in, stay the night to make sure all is well and come home Wednesday. My Aunt Gwen and I are going to drive over there tonight to drive my mom and dad (so my mom can attend to my dad) and then I'll drive our car back. They want to go straight to UAB and see Dr. Carroll. His nurse said to come when you can and he will work dad in. From all the complications with the biopsy and what the ENT visually saw when putting in the trach, his cancer is worse than we thought. It hasn't spread (that we know) but just in bad shape. He needs the removal surgery very soon.
We received a huge blessing when we called on Monday to talk to Dr. Carroll's nurse, Paula. Last week my parents had cancelled my dad's appointment with Dr. Carroll that was scheduled for Aug 14 and his surgery scheduled for Aug 20 because it was going to take CTCA a longer time than originally thought to put together their plan of action. When my mom called Paula on Monday to explain what happened over the weekend, Paula said she didn't cancel the appointment on the 14th or the surgery on the 20th. She said she just had a feeling that she didn't need to do that. Praise the Lord! I don't think he could make it until the rescheduled surgery on Sept 10!
Here are our prayer needs now:
1. Please pray the feeding tube insertion goes well and that there are no more setbacks and that we can go home Wednesday morning
2. Pray that the travel from Newnan, GA is easy for my dad.
3. Pray that Dr. Carroll is able to still go through with his original plan for surgery/reconstruction
4. Mainly pray for my dad's spirits to go up. As you can imagine, with all of this unexpected news he is very sad and stressed. The events have come at him so much faster than expected.
5. Again, my prayer is still for total healing!
I appreciate all of you so much for all your prayers, calls, emails, texts and concerns. We are so blessed right now to have so many people praying for him. If you have a prayer list at your church or know some amazing prayer warriors out there, please feel free to pass along his name: Larry Moore.
(This was my initial email to closest friends and family as a prayer request.)
As many of you remember, my dad won the victory over pharyngeal (throat cancer) in the fall of 2004. After a feeding tube, trach, extensive surgery to remove lymph nodes in his throat, receiving 39 treatments of radiation and 13 of chemo, the tumor was gone. He has been cancer free since then.Just happened to be one of the 13% to be diagnosed with head and neck cancer without a history of smoking/alcohol. He still struggles with swallowing difficulties at meals and is limited to the types of food he can eat safely, but Praise the Lord, he is here with us.
This August would be 9 years cancer free. Unfortunately, the past 3 weeks have been difficult for my family. From one test to another, trying an antibiotic for what was thought to be yeast in his throat, which led to a biopsy Tuesday, July 16. The results were devastating. The cancer has returned. Not the same tumor. But, the same type of cancer in a different location in his throat. (squamous cell carcinoma) After a PET scan and meeting with his ENT yesterday, he was basically given a few options for treatment which includes surgery- the removal of his larynx (voice box) and creating a new "throat" or swallowing passageway. Of course, that's a huge change in quality of life. And, there's a 60-70% chance the cancer will still return in the future. Chemo is also an option but not a cure to end all. And, radiation is not an option because he has already received the maximum amount of radiation and would not be beneficial in fighting the cancer.
We also received results from his Pet scan this morning that were not encouraging either. The spot on his nasopharynx and a questionable spot on his lungs. We pray the spot on his lungs is something unrelated.
With all of this said, my dad, my mom, my sister, and myself are desperately requesting your prayers. You are on this list because I know you will lift my dad's name to our Lord Jesus Christ! We are reliving a horrible nightmare and we are physically, mentally, and emotionally broken. My dad is worried, concerned, confused, shocked, beaten down, and still trying to grasp this news. Please pray for my mom as she is so positive and encouraging. Pray for her strength to continue her positive attitude. Pray for my dad to be encouraged by other patients that have received this same surgery through phone calls/emails. Please pray for him as he makes his decision for treatment. Please pray that peace and discerment would replace doubt and worry. Please pray for these doctors as they lead him to make the best decision. Please pray for a peace to cover my mom and dad during this difficult time. Please pray for their sleep and that He will bless their rest. Please pray that the Lord's presence will constantly surround my mom and dad during this time.
And, ultimately, please pray for COMPLETE HEALING in Jesus' name! He is the ultimate Physician, He is still on the throne, and He is still in Control. Even cancer. We appreciate and covet your prayers more than you will ever know. Please feel free to share his name with any prayer groups or prayer warriors you know. My family believes in the Power of Prayer!
For those of you that know me, but don't know my dad's name, it is Larry Moore. And, he is a precious husband, father, Christ follower, Poppie and we love him dearly.