Please see the following update from Liz. What she does not say is that the financial burden is extremely high since the deductibles and co-pays reset Jan 1. She is currently paying someone to help a couple of hours a week because insurance is not covering home health. The option was home health or speech therapy(which is required to see if there is any possibility of him getting off the trach.) Disability will start paying less than $400/week and this does not cover their health insurance premiums. Please consider any donation to help the scales navigate the next few months. Prayers also for Liz to be able to work on her business so there is a possibility of income in the future. 

SCAGEL UPDATE

Please see the update from Lizzie at the website link below. The Scagels have a long hard road ahead of them and the immediate expenses are significant. We need to raise money to help cover costs included with another surgery as well as ongoing care. There will be a gap in paycheck of 4-6 weeks before they will get any disability. Once disability kicks in it is a very reduced amount ($350/wk) and doesn't cover health insurance, so we need to raise the funds to cover the gap in income as well as the cost of health insurance. 

This will most likely be a permanent situation and we need to raise funds to help support them through this so Lizzie doesn't have to worry about money during this already stressful season. 

https://www.thetexas7.net/post/everyone-has-an-opinion?fbclid=IwY2xjawGocw9leHRuA2FlbQIxMQABHdssaI5aOIRWfuOxQIhFXlDB-WRbIqWdkAfmKoumkcTlGP9eYWRMCEwzSw_aem_O_LPBvh_vdXnWV2wQCyWVQ

Thank you to everyone for your prayers and support. It is so very appreciated.

I have some really disappointing news. Kenny’s surgery yesterday did not go as planned. When they went in they discovered lesions in his throat and found other concerning areas. They could not remove the hardware in his jaw. They biopsied his throat, multiple areas in his mouth and on the outside of his neck where there’s an open wound that won’t close. All areas they biopsied came back positive for cancer. They would not remove the infected hardware or do anything else as that can spread cancer cells around. None of the scans he’s had in the past few months showed any signs the cancer was back. We will now have to get new pet scan of his whole body. That will tell us if the cancer has spread to other areas. If it has not spread they would consider surgery but that would mean removing enough of his throat that he would need a permanent tracheotomy for breathing and a Gtube for feeding. We are not there yet. We will explore all options including any and all alternatives to traditional medicine. We will be seeing the surgeons again and seeing the oncologist at UT Southwestern. Both appointments are Tuesday. Pray we can get a pet scan quickly. Also pray for us to know how to tell the kids. The older three know. The younger four don’t. Claire will be moving home at semester break. Or sooner if needed. She can commute to classes. Please pray we will find the right thing to say to the kids and that we can figure out all the right choices to make.

There will be significant financial need in the coming months as we navigate treatment and Kenny's ability to work. Thank you for your prayers and support-it is so very appreciated.

From Liz:

Kenny's surgery, originally scheduled for yesterday, was postponed due to his bronchitis. It's now rescheduled for four weeks from now, which is tough given the infection and swelling in his jaw. 

We reached out to the infectious disease (ID) doctor on Monday, hoping to get Kenny back on IV antibiotics sooner, but he won’t be able to see her until next week. Meanwhile, Kenny's cough hasn't improved, keeping him up all night. Yesterday, he visited the ER for imaging, and thankfully, his lungs are clear despite the cough. However, they discovered an abscess that will need draining. 

The plan was to transfer Kenny to JPS for his surgeons to handle the abscess, but the transfer was denied. Instead, Kenny is staying at Harris, where he’ll have a surgeon drain the abscess and hopefully start IV antibiotics until his surgery in November.

This week has been incredibly stressful, and Kenny is worried about using up his PTO before the major surgery. We ask for your prayers that the abscess is drained soon and that the surgery date can be moved up, so he won’t need to stay on IV antibiotics for too long. 

Please pray for Kenny's health. He developed a cough over the weekend and was diagnosed with bronchitis on Monday. It does not look like they will do the surgery on Thursday as planned if he is still coughing. His neck and jaw are showing visible signs of infection in spite of antibiotics. Please pray that Kenny's cough goes away and his surgical team is willing to keep him on the schedule this week.

Thank you!

From Lizzie:

Kenny Update

As you may know Kenny has been battling infections in his jaw since the first abscess he had 1 month post op in February. 

He finished radiation in May. He had a picc line delivering strong IV antibiotics for 6 weeks in August and September. During that time he was also hospitalized for blood clots in his lungs. 

The Doctors believe that the metal plate holding his transplanted leg bone in his jaw is colonized with bacteria. This is why he cannot beat the infection. The plan was to use IV antibiotics and hyperbaric oxygen therapy to try to accelerate the healing of the bones in his jaw so that the metal plate could be removed. 

He has been going to the hyperbaric chamber every day. The process involves them slowly pressurizing the chamber until it reaches 100% oxygen. They refer to them as “dives” because it is similar to the effects of scuba diving in the ocean. He is in the chamber for two hours a day. Kenny has completed over 40 dives. 

Unfortunately we found out this week that the lower part of the bone in his jaw has not fused or “bridged” into the jaw bone. This means they will not be able to simply remove the metal plate. But something has to be done now and the surgeons have decided to perform another surgery next week. 

The plan is to remove the metal plate and replace it. This will also involve them trying to “freshen up” the ends of the bones that have not fused and push them together to hopefully encourage them to join. 

Sadly he will have another neck dissection. Since his neck has had a lot of radiation, they will have to remove some of the skin as it will not heal easily. A procedure that seems most fitting to Frankenstein will involve them partially cutting skin from the opposite side of his neck and rotating it around while still attached to cover the area they must remove. 

This is all a tentative plan. As they said things can change once they get in there. 

If you have made it through this whole update I thank you for reading. Kenny has been such a trooper but is exceedingly weary of this whole ordeal. 

We ask for your prayers next week during surgery and for the recovery afterward.

To make matters more challenging, the insurance company refuses to consider over $20K out of pocket already spent on his tooth implants, as they classify it as "dental." This means they will be considerably out - of - pocket for this surgery and hospital stay. Kenny will be out of work for at least a week, but his Paid Time Off (PTO) is limited due to using it up before receiving disability.

We are aiming to raise at least $10,000 to help cover these out-of-pocket expenses and medical costs. Any contribution, no matter the size, will greatly help Kenny and his family during this trying time.

Thank you for your support and generosity, and for keeping Kenny in your thoughts and prayers.

It has been too long since the last update! Kenny will be starting radiation therapy next week. The good news is that he has found a fantastic doctor to manage his radiation at UT Southwestern. This is much further than they anticipated, but necessary. To make a long story short, Kenny was referred to a radiologist at JPS in Fort Worth, but was not comfortable with the facility or practice. He met with an Oncologist nearby at a very well respected facility nearby and left very dissatisfied that the doctor was not familiar with his type of cancer and treatment. In fact it did not appear that the doctor had even looked at his file before the appointment. When he contacted the folks at JPS to speak with them again, he was told that they would not accept him because he had sought a second opinion(they don't allow that?). His surgeon recommended that he reach out to UT Southwestern. He had a great meeting with them and is back on track with his treatment. 

There has been some difficulty getting his disability sorted out. Please pray that is resolved and his treatment goes well. There will be added stress and expense getting him to Dallas 5 days a week, but they are eager to get started. Your prayers and support have been overwhelming and much appreciated.

Please see Lizzie's update below:

Kenny is in for a CT scan in order to have his radiation mask made. He will start radiation on the 8th. He’s in good spirits. I have reminded him of all the of the special intentions of those of you that have asked. He will have time to pray during his radiation treatments every day for 6 weeks. Please pray for him that his neck incision will fully heal from when he had the abscess and that he will not have the worst side effects of the radiation. May you have a blessed Good Friday. 

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.

3 weeks post op

From Liz:

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.

-Lizzie

***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***

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 ❤️

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.

From Liz:

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!

*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. 😁

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!

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