Treatment #1 + Nerve Block

Today John was put under anesthesia for his immunotherapy treatment and the placement of a nerve block along his spine. John has been awake and pain free this afternoon.

I cannot believe I am writing this. John is pain free. It has been months of constant pain, including countless agonizing pain spikes, but thanks to the nerve block they ‘installed’ today, John woke up from anesthesia pain free.

When John woke up and Todd was able to report to him that both the immunotherapy and nerve block procedures were successful - John was SO happy. John asked Todd to take this photo to document what we are hoping with all our hearts is the corner he is turning, away from his lowest point.

John asked Todd to take this photo to document what we are so hopeful is the point when things are turning around. Good-bye low point.

The past couple of days were a really, really hard on John. He has been so strong, and so brave for so long, but he did hit a low point this weekend. Even with increases in IV morphine. He was miserable, and beyond exhausted, physically and emotionally.

The Nerve Block Pump

Over the weekend, the doctors had been discussing the possibility of two different kinds of nerve blocks, both of which would not come without risks, to address John’s unmanageable pain. Still, everyone on John’s care team was prioritizing this immunotherapy treatment, so the plan was to do that, and do a nerve block at the same time.

What they ended up doing: they have installed a nerve block pump between John’s vertebrae using a CT scan and fluoroscopy to guide them. This nerve block will last 4-5 days. This is not a long term installation due to risk of infection the longer the pump is in. We are hoping that after this 4-5 day period, his pain will improve due to treatment and/or they can explore other nerve block or pain patch options if needed.

They had prepared John that if there was any complications with placing the nerve block, such as bleeding, they would have to just stop and would not be able to retry. So, going in, we had some worries about ‘what if they can’t do the nerve block!'?’ But they did it. And, John is currently pain free.

The Immunotherapy Treatment

For the immunotherapy treatment portion of this procedure, they ended up going very aggressive, injecting 18 different compounds (immunotherapy drugs and the like) into John’s pelvic tumor. This is much different than what they had originally thought they would do when they were planning a month ago. Because of John’s condition, the determination was made that they needed to go all in.

As an informational aside, with these intratumoral immunotherapy treatments, immunotherapy compounds are injected directly into the patient’s largest tumor to stimulate an immune response, causing what Dr. Williams likens to using the tumor as its own vaccine. Delivering immunotherapy treatment directly to a tumor has shown to be more effective because it ultimately teaches the immune system how to fight the cancer.

There is a possibility that John will have a reaction to the immunotherapy treatment (this happened to him round one, treatment #3 in October 2024) where he would have a whole-body, knocked-out, flu-like reaction. The nerve block won’t help with that, of course. This reaction would be unfortunate, but not a bad sign, not dangerous. No way to know if he will have this reaction, or not. This guys deserves every break, so please please please hopefully not. And the nerve block will continue to manage the pain outside of the flu-like reaction.

John will remain inpatient as they watch him closely over the next couple of days because he does have a little fluid in his lungs, and some edema that they are going to give him a diuretic to address. As they observe him, they will also decide when they will do the next treatment, as they would like do the second immunotherapy treatment as soon as possible.

John’s Care

I had mentioned before how impressed we have all been with the quality and attentiveness of the care John is receiving. Not just from Dr. Williams and his team, but from all of the doctors and nurses who are hospital staff.

John told me again this afternoon about the amazing care he is receiving: he said it is the most kind and compassionate care he has ever received. His nurses have taken time to sit with him, to hold his hand, to stroke his hair, to try to comfort him. His nighttime nurse, Michael, rubbed coconut oil on his legs among other things, trying anything to help with the pain. John will never forget these kindnesses that have been interwoven in to the quality medical care.