Everyone has an opinion...
On Tuesday, the 5th of November, we met with the original surgeons who performed Kenny's Fibula-Flap surgery. The doctor told us that due to the cancer spreading and being in the transplanted bone, we had very few options. The surgical options she explained were to remove part of his throat, the transplanted bone, and a lot of the right side of his neck where the cancerous wound is now. He would have to have a tracheotomy for breathing and a feeding tube. If he underwent all of these procedures, he would have a 25% chance to live five years. She said that other than surgery, our options were chemo and immunotherapy, but they would not be curative but palliative in nature. We told her we were exploring all options. We had heard about a clinic in Arizona that takes a holistic approach, including an analysis of RNA Transcriptome Genes to get to the root cause of the cancer. She said she knew that this is the direction in which things were moving in the cancer field, but it is cutting-edge technology, expensive, and not yet part of standard practice.
Last week, we met with six different doctors: surgeons, radiologists, oncologists, wound care specialists, and an infectious disease doctor. The doctors at UT Southwestern, where Kenny had his radiation, and a surgeon from Texas Health Fort Worth all said the same thing but had different timelines for surgery. They also gave a slightly better odds of a 50%-70% survival rate. Our only option is to remove everything we can.
- Part of the throat.
- Remove the old transplant bone and more of the original jaw.
- Right side of the neck.
Then start chemo and radiation.
It seemed like too much to even believe. We left the meeting with the surgeons with referrals to follow up with oncology, speech therapy, get a CTA to check if his other fibula could be used, and a referral to get a feeding tube placed. The next day, Friday the 15th, he had a PET scan early in the morning. We still don't have those results yet. The concern is whether the cancer is confined to his head and neck or if it has spread to other parts of his body. On the same day, we called the Arizona clinic again. That was our goal, to get them to take us there. Late Friday, they got back to us after reviewing all of the records. All three surgeons agreed. Our best option was surgery. If we had a surgeon willing to operate, we should do it immediately. With this type of cancer, how aggressive it is, and how quickly it is returning, surgery followed by chemo and radiation was the best option. If the PET scan comes back and the cancer has spread and the surgeons won't operate, the Arizona clinic will reevaluate and consider helping with a palliative plan. Needless to say, while we were devastated, it made the choice clear. He has to have surgery and soon.
The surgery will be performed in stages. First, the removal of cancer. The original fibula will be removed, areas in the mouth with visible tumors will be removed, part of the throat where there is a visible tumor will be removed, and soft tissue in the neck where cancer is growing will be removed. They will then replace the skin and soft tissue and wait for reconstruction. They must wait for pathology to come back on the bones and margins they removed to be certain they got all the cancer. The calcium in the bones must be dissolved to test accurately. That will take 3-7 days. Then, if they are assured they got everything, they will proceed with jaw reconstruction using the fibula from his other leg or his scapula bone if the fibula and vessels from his other leg will not work. We still need to get the CTA scan of his other leg.
Surgery is scheduled for Wednesday, November 27th, the day before Thanksgiving. Please pray for good PET scan results and that we can get all these appointments completed smoothly in the next week and that Kenny's pain can be managed well.
Thank you for all your support for us and the kids. We have been blessed by your messages, offers of help, and financial assistance. We could not do this without such a supportive community.
Comments