As some of you know Kenny was diagnosed with cancer in his mouth and jaw a few weeks ago. He is a teacher at Cassata Catholic School and one of the best teachers we know. Thankfully he is under the care of excellent doctors and surgeons, but the treatment will be very invasive and recovery will be difficult. Unfortunately, Kenny will not be able to teach this semester and there are significant costs associated with the surgery and recovery that are not covered by insurance. The implant posts MUST be put in at time of surgery. Even though surgery destroys part of the jaw and teeth, medical insurance does NOT cover the implants. They say they do in pre authorization and then it is denied. Up front cost $19,000 just for implant posts and estimated out of pocket costs are $30,000. This MUST be paid before they will do the surgery which is scheduled for Jan18th. Below are some questions answered about the type of cancer and treatment. Please keep the Scagels in your prayers as they navigate this path.
About this type of Cancer:
What type of cancer is this? Stage 4 Squamous cell carcinoma. It is the most common type of cancer in the mouth. If it is in the mouth and teeth, it is in the underlying bone. The way it spreads is through the lymph nodes. Thankfully his lymph nodes are clear. The Doctors will remove the lymph nodes in the right side of neck as a precaution.
The Mandibulectomy and Fibula Free Flap Reconstruction surgery is projected to last 8 hours. They will remove part of the jawbone and use part of his fibula bone along with an artery, vein and soft tissue from his leg to replace what is removed from the jaw.
Once Kenny is healed from surgery (6 weeks post op) he will have radiation for a six week period, five days a week. The Doctor indicated he WILL NOT want to talk for 2 to 3 months.
Hospital stay of 1-2 weeks. At least one week on NG tube (feeding tube) after surgery. Then do a swallow study.
What’s the outlook? It’s a tough disease. Five years out 65% survival rate with no neck disease. Goes down to 30% if it involves lymph nodes.
Update #8 February 19, 2024
Prayers for Kenny please.
Liz brought him to the ER last night as his neck was red and swollen at the incision site and he had experienced a fever. CT confirmed it was an abscess. He is in surgery now to drain it and clean out any infection. We are praying that it does not affect the transplant site. They say he will be in the hospital for a couple of days.
Update #7 February 9, 2024
3 weeks post op
Kenny is doing really well. He has had no complications after surgery. I have sent a couple of terrified emails about the look of his leg and skin graft. The Drs say “yeah, they pretty much all look like that” which is comforting…I guess. 😁 he is moving around well in his boot with the walker and getting stronger every day.
The pathology report came back and of the 20 lymph nodes removed, they found one with cancer and as it was contained they do not count that as “spread”
We are starting the process of being referred to oncology and radiology to see what his options are and what needs to be done moving forward.
Thank you for all the texts and cards and messages of support. ❤️❤️❤️
Feel free to text to check in on him. I know he’d love to hear from people directly. If you don’t have his number, send me a message on Facebook or Instagram and I’ll get it to you.
***There is still significant financial need-The estimated amount needed to complete the implants is almost $25,000 on top of the $19,000 out of pocket already spent. Your generosity has been overwhelming and everyone is so grateful-Rebecca***
Update #6 January 23, 2024
5 Days post op
Kenny is doing so well considering everything he’s been through. We were finally moved out of ICU and into a regular room yesterday. The physical therapists have gotten him up walking with the walker. He has a giant Iron man looking boot on at all times. He also still has a wound vac on that leg plus two other drains from the neck. He will probably go home with a drain or two. Good thing we have lots of experience with those.
His hemoglobin is on the low side so he started an iron transfusion today. He banked his blood but he received it during the surgery. Thursday he will do the swallow study and see if he can come off the feeding tube and go home.
The Drs. say he’s doing very well but needs to go slow. He’s already talking too much. What a surprise. 😂 He has a long road ahead. Please pray the transfusion provides the results doctors are looking for so he can avoid a blood transfusion. Thank you all for your continued support and prayers It has helped so much ❤️
Update #5 January 20, 2024
Day after surgery update
Kenny is doing amazingly well. He is still in ICU. The ventilator was removed this morning. He has a monitor that you can hear the swish swish of blood flow to the transplant. Music to our ears! They got him out of bed and into a chair today. He has been there for hours and I cannot believe how well he’s doing. His leg is in a boot and has been causing him the most pain. So pray for that. Also his blood sugar after surgery was extremely high and he’s been on insulin today and that has brought it down. He had a slight fever earlier but that seems to have gone away. Please pray that he will have a restful night.
Update #4 January 19, 2024
He is out of Surgery! Thanks be to God! 12 hours under. He is in ICU. He was trying to wake up. They had to give him a sedative. He needs to rest and stay asleep until tomorrow.
Thank you for all the prayers!
I will update as soon as we know more!
Update #3 January 18, 2024
*10:35am update: Still working on leg and neck.
Progress so far-7:30 went back to OR. Seems like surgery started about 8:45. That’s when I got the first text. I keep getting generic texts like “patient doing well” or “procedure is going well as planned”. Asked the front desk about getting updates from his OR nurse and was told oh you only get generic updates. Politely asked that she check with his OR nurse and gave her the name. She came back and said “ok his OR nurse said she would text you updates as things progress. 😁
Update #2 January 17, 2024
Thank you for your gifts! Liz was able to pay the surgeon nearly $20,000 this week to move forward with the surgery! Kenny goes has to be at the hospital at 5:30 AM - he is as ready as he can be. The surgeon's office called today to let Liz know that they had not included the upper teeth posts in the estimate they provided, but would allow them to pay that part out. That cost is $5400...on top of the nearly $20,000 she paid them on Monday. Please pray for a smooth and successful surgery for Kenny tomorrow and for peace and strength for Liz. We will update you tomorrow after surgery!
Update #1 January 4, 2024
We cannot thank y’all enough! We are blown away by the support! We had our final meeting with the team of Doctors on Tuesday. We know Kenny is in the best hands. These Drs do the most fibula flap surgeries of anyone in the country and they only do 12-15 a year. So each one is planned meticulously.
We also met with the Prosthodontist yesterday. We like him a lot. It was tough. He explained about the loss of salivary glands and made a plan that includes removing more teeth than expected and includes more implants. This will help them maintain a better bridge between old and new bone. It all makes sense it was just quite shocking to hear. We are waiting to see how this affects the ever growing list of things not covered by insurance and how much more we have to pay out of pocket before surgery date.
The hospital committee met last week and put together the final plan for Kenny’s surgery. There will be fours doctors working during the surgery. They plan to use bone from his left leg for the transplant. He will be in a walking boot for six weeks post op. As they said before, they estimate an eight hour surgery but it could be longer. He will remain sedated in ICU for 12 hours post op. If everything is looking good and they see the vessels are working properly, they will wake him up.
We know there will be great challenges ahead. Thank you all so much. All that you have given, every donation, will help us make it through the coming months.
Kenny & Elizabeth
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