Brandon is still in surgery, but we know you all are waiting for news so wanted to do a quick update. First of all, they didn’t actually begin the surgery until after 4:30. That’s part of the reason this update is so late. We just talked to the oncology surgeon, and he said they were able to get the known tumors with clean margins. He said one was bigger than anticipated, so he had to go into the abdominal cavity. The good news from this is that he didn’t see any evidence of disease within the abdominal cavity. He removed what showed on the PET scan, which he said was fibroid tissue.

Since he did have to do a more invasive surgery than he thought, the plastic surgeon has a more involved task in closing him up. They are using a surgical mesh to replace part of the abdominal wall. The oncology surgeon said this could cause him to have a more painful healing process. We’re not sure at this point what the recovery timeframe will be. We will be able to talk to the plastic surgeon when he finishes and may have a little more information then, but it will most likely be tomorrow when the doctors make their rounds before we really have a good idea of what to expect in the coming weeks.

One more bit of good news before we sign off for the evening…Brandon’s kidney values were a bit better today than two weeks ago. They hadn’t budged in a couple of months, so it was encouraging to learn they are still trying to get better!

Please keep him in your prayers. He’s got a rough patch ahead, but we feel good about the news we’ve gotten so far tonight!

Brandon’s surgery is scheduled for 12:30 tomorrow afternoon. He’s taking it easy today, staying in with Kristen and the girls. We’re not sure how long this surgery is supposed to last, but we will update this page as soon as it’s over and we’ve talked with the doctor. Please keep him in your thoughts and prayers tomorrow. Brandon truly appreciates the support he gets from each and every one of you!

Brandon’s surgery is scheduled for Monday, but we still haven’t been told what time. He’s been tying up loose ends this week – had his iron infusion on Tuesday (the last of the 3 he had scheduled) and had an appointment with the plastic surgeon who will be “patching up” his abdomen post surgery on Wednesday.  He still isn’t sleeping well at night, and that plays a big part in his continued fatigue. The iron infusions were supposed to give him more energy, but they haven’t seemed to turn the tables yet. Please keep him in your thoughts and prayers in the coming days. We will keep everyone updated on Monday for sure!

The NY doctor called both the KU oncology surgeon and Brandon on Thursday and told them he hadn’t had a chance to look at the PET scan yet, but he thought he would recommend going with a lesser surgery to just remove the known larger tumors at this point and wait on clearing the entire abdominal cavity until the burden of disease was greater. He said he understood timing was tight and would try to review the PET scan as soon as possible. Then the KU oncologist called Brandon late Friday afternoon and said that’s what they were going to move forward with doing, then they will scan again in 3 months to monitor what is going on inside the abdominal wall. So he’s still scheduled for surgery on November 6, but the hospital stay should be less than a week this time. This leaves us knowing there will likely be another CRS surgery in the future, but this will give his body more time to recover from the one he had in May. We all agree that if and when he has the CRS again (with HIPEC if his kidneys come around), he should do that in NY. It would be such a blessing if the molecular profiling shows that there is a drug out there to specifically target Brandon’s cancer so he wouldn’t have to go through that surgery again. That’s what we will keep praying for!

Thanks so much again for your prayers and support! It means so much to all of us!

We’re moving forward with the plan for surgery on November 6. The two doctors still haven’t connected, but we’re confident in his surgeon here and know Brandon’s in good hands as far as surgery goes. We did learn that his surgeon will be sending some of the surgical tissue for molecular profiling. Hopefully, this will help identify what type of treatment (chemo? medication? clinical trial?) they may use after the surgery to target his cancer. One of the oncologists we talked with said that they may be able to put him on a drug that isn’t specifically FDA approved for his type of cancer but may work for him individually. Of course, as we experienced when we were trying to get his first surgery approved with the insurance company, insurance most likely won’t cover the drug if it isn’t FDA approved for mesothelioma. We will cross that bridge if and when we come to it. At least they are looking into options they weren’t looking into before.

Keep praying and sending healing vibes his way! Some days are easier than others for him, but having a plan in place helps.

Brandon heard from KU this morning. Evidently, the two doctors STILL have not been able to connect, but the surgical oncologist here at KU wants to go ahead and schedule surgery for November 6. This would be another cyto-reductive surgery, but they would do it without the chemo bath since his kidneys can’t tolerate that. It would also involve some plastic surgery on the abdominal wall. The hospital stay and recovery period would be similar what he just went through in May. So at least we have a plan. However, we are hopeful that the two doctors will connect before the surgery date and the NY doctor will have more treatment options (in addition to this surgery or perhaps another type of surgery). Please send all your channeling energy to get these two doctors together for a conversation soon!

Brandon was told he’d hear back from the KU surgical oncologist by Friday afternoon to let him know what the plan would be going forward. However, the two doctors weren’t able to connect to discuss his case, and Brandon had a rough weekend of waiting. Here it is Monday afternoon, and he still hasn’t gotten the call. He did reach out to the nurse early today, and she is supposed to let him know when something has been decided. That’s where we are now.

In the meantime, Brandon is having his second of three weekly iron infusions this afternoon. Those wipe him out, so hopefully he will be able to get some sleep tonight. He hasn’t been sleeping well, naturally.

Please pray that he hears something soon because the waiting and worrying isn’t doing him any good. Thanks again for your support and for caring!

This rollercoaster ride just keeps going for Brandon, and it is not the fun kind! He had a PET scan this morning and a follow-up appointment with his surgical oncologist at KU. The doctor spent a little over 5 minutes with Brandon, and half of that time was spent in silence because he is truly at a loss for what to do next. He said the PET scan showed a possibility of mesothelioma recurrence in the abdominal cavity. He could do surgery to remove the tumors that were evident in the MRI, but he’s concerned about what could be in the abdominal cavity and what to do about that. He thinks it is way too soon to do another CRS/HIPEC surgery, and he wonders if there is another type of chemo they could move forward with. Brandon had hoped to leave the appointment today with a plan, whether he got good news or bad, but that didn’t happen. The surgeon is going to call the oncologist Brandon saw in New York and talk to him further to come up with a treatment option. We’re not sure if the treatment will be here or in New York. He’s supposed to call back by Friday afternoon and let Brandon know. Until then, we’re just praying and waiting.

Brandon’s oncology surgeon at KU decided to request a PET scan prior to scheduling his surgery. Brandon will have this scan next Wednesday, October 18, and then see the surgeon later that day to go over the results and set the date for surgery.

We also learned yesterday afternoon that his case was discussed again last Friday at the KU tumor board panel, and they are basically in agreement with what the doctor in New York told him. They recommended biomarker and oncogene testing as well. This will give the doctors treating him a better understanding of which of the newer treatments currently being tested and soon to be approved might specifically target his cancer. Our hope is that with the KU tumor board following his case and making recommendations and the doctor in New York overseeing his care, they will come up with a good plan for managing this going forward.

Brandon met Dr. Kluger at Columbia University Hospital in NY yesterday and felt really comfortable with him. They talked at length about the results of the recent scan and what may be going on with the mesothelioma. Dr. Kluger feels it’s not in Brandon’s best interest to do the CRS/HIPEC procedure again at this point because he would like to save that for a time when there may be more significant burden of disease. He feels that with what they are seeing localized on the scans right now, the best option is to remove those spots with a less invasive surgery. He said that he wouldn’t follow up with chemo now either because the best and most effective plan of attack with this type of cancer is to just remove it. (That is essentially what we heard from the M.D. Anderson doctor as well, so it’s good to know those two are on the same page about that.) He said he could do the surgery, but he recommended Brandon have it done here with his surgical oncologist at KU so he would be close to home. He said the surgery would only keep him in the hospital for a day if all goes well, but it might be a good idea to be here where his family could visit/support him if something doesn’t go as planned and keeps him in longer. He put in a call to Brandon’s KU surgeon so they could discuss it, and we will make a plan as soon as we hear back from them. So what we know at this point is that he will have another surgery most likely within the next couple of weeks, but this one shouldn’t be as difficult or debilitating as the one he had in May.

Dr. Kluger will keep up with Brandon’s scans and will treat him in New York should the need arise. He talked about a different technique they use as far as CRS/HIPEC where they do it in two different surgeries. They do the CRS/HIPEC like he originally had and leave a port in the abdomen so they can continue the intraperitoneal chemo treatments for 4-5 months, and then they operate again. Sounds interesting and promising. He touched on some of the new immunotherapies that may be important in Brandon’s treatment down the road. New research is being done every day, so let’s hope they discover an even better way to treat him should he need that in the future.

Keep the prayers and positive thoughts coming. They are helping Brandon in a HUGE way!