Thursday, May 10, 2018

Great News!

Yesterday, May 9, 2018, we went for Brian’s surgical follow-up. We saw Dr. Lambright the thoracic surgeon. He was happy to tell us that he got all the cancer with clear margins! That means Brian does not have active melanoma in his lungs! We are not aware of any other areas of melanoma at this time!  Also, Brian’s lung function has recovered more than the Dr. expected! That will continue to improve over the next few months. It is like a reprieve for him right now. The hope is that the Nivolumab has changed his immune system enough that new melanoma won’t grow. We have to continue with periodic CT scans but Brian wants to wait until at least August for that. He has also requested a new oncologist and is set to meet Dr. Johnson in August. Right now the plan is to enjoy our freedom from the hospital for the summer! Please continue sending prayers his way.

Tuesday, April 17, 2018

Tuesday Update

     I gave Vanderbilt yesterday to update me about the HVAC incident. We never heard a thing. Today I called Aaron Hirsch to get the last names of Brian's nurses and to get an update from him on what he might have heard. He gave me the names with no problem. Then he called Karen Broch with infectious disease for an update. He called me back with the info that there would be no investigation as they decided it was just regular dust. I told him that it would be regular dust at my house but not at the hospital! I then called Danett Guy:left a message, Susan Johnson:she has laryngytis. She sais the same thig...no investigation asit wasjust regular dust. She gave me  the name Vickie Brinsko the Director of Infection Control...had to leave message. I called Betsy Kay-Hall with Dr. Lambright to give him an update. She said she'd let him know. Haven't heard from him. I called patient relations and had to leave a message. Then I called Jamie Wyatt to give him an update. He called me back and I let him know how dissatisfied I was with the nonsense. He agreed. Said to give Patient relations time to call me back.
     Mike Garrott Director of Patient Relations called me back around 4:30! He tols me what he had heard about the incident and then asked me my side. I tried to be very deliberate in my retellin and gave him names of people involved. He asked if I would give him til tomorrow to contact these people and get back to me. I agreed and thanked him. I also let him know that I was very unhappy with the situation in it's entirety and the fact that we were left in that room for almost 12 hours repeatedly asking to be moved somewhere else. We'll see. Then I called Jamie Wyatt back so he was up to date on everything. Tomorrow will be another day.




Sunday, April 15, 2018

Another update

     Apparently most of the hospital has heard about what happened. It involved 10-12 rooms. Some of those people are still in those rooms! Dr. Lambright is especially concerned as his patients are sent to that exact area!
     Brian has developed a bad headache and severe sore throat. We are still in the hospital on Sunday...probably go home on Monday. I want to know what they are going to do about this whole thing. I requested that Dr. Lambright’s office let us know what they hear. I also want copies of any reports that are generated from this issue. We’ll see if that happens. Brian’s nurses where Layaneh, who first saw the stuff on him, and Athena who came on duty that morning.
     I will update as I get more info.

Update on Brian

    We came into Vanderbilt at 5:30am on Thursday, April 12, 2018. Surgery was successful! Dr. Lambright was able to remove the whole tumor! It was larger (bigger than a golf ball) and much deeper in his lung than they thought. He has more and bigger incisions because of that. BUT IT’S GONE!!!!!
     Early in the morning on Friday his nurse came in and was quite agitated. Asking “What is this!? Please tell me you were eating Oreos! I don’t know what all this black stuff is!”. I got up and got my camera. Brian, his bed, his tray table, etc. we’re all covered with a black substance that had apparently come out of the air vent over his bed! The nurse(Layaneh) was freaking out. She got someone in (Blake) to help clean it up and I told them they better save that so we could find out what is was. They didn’t listen and continued to clean up. I got samples and asked for a ziplock bag to save it. We asked for a new room. None available. They got him into a chair and changed his bedding. I sat on the edge of the bed and stuff continued to fall out of the vent onto the clean bedding, onto his breakfast tray, etc. Asked to be moved. No rooms. Floor nurse came in. We expressed our extreme unhappiness and wanted to know what he was going to do to help us. I explained that Brian is compromised enough with cancer and less than 24 hrs out of surgery. He agreed. I also explained how dangerous it could be to the rest of us. He agreed. I then explained how this could be a major lawsuit in the making. He agreed. He left to try to find another room for us. About 30 minutes later about 7 people all wearing suits and having titles were in our room. Our room was so small they had to stand out in the hall. The main talking woman explained that the HVAC system was being worked on and they did something they shouldn’t have that resulted in that stuff blowing back into the rooms. They were sending some of it from another room out to be tested for mold, fungus, etc. I told her that we had our own samples and pictures. There was a very long silence. I explained that I had asked the nurses to save the stuff and they didn’t. I explained that they used a broom to clean up and therefore stirred everything up and then took the broom somewhere else. I explained that we had repeatedly asked for another room because stuff was still coming out of the vent onto us...and now them, too. Another long silence. I explained that I knew their job was protect themselves and my job was to protect Brian and I would do whatever I needed to to accomplish that. I explained that I had already contacted his oncologist, his surgeon, his Medicare advocate, as well as the mold epidemiologist. Another long silence. I asked for business cards for all of them which they did not have...hard to believe. They left after assuring us there would be an investigation and we would be notified of test results and moved to a new room. I had Aaron...floor head nurse...get me names and titles and phone numbers of everyone who was there. He did that. We weren’t moved until 4pm!
     Dr. Lambright came in shortly after that. He was furious about it all but tried very hard to be calm and meticulous with his words. I found out later that he has been trying for quite some time to get something done about the lack of cleanliness on 9N.
     Here are some pictures I took:








Monday, March 26, 2018

Cancer Really Does Suck!

It is March 2018. Brian had his regular CT scan in February. The cancer has really ramped up and is growing quickly. He's had to be on high dose prednisone because of the pnuemonitis and that keeps the Nivilumab from working. We thought he only had one small tumor but he has two. One in each lung. This past Thursday (the 22nd of March) he had a wedge resection of his upper left lung. Dr. Lambright was able to remove the tumor and sees no more cancer in that lung! Now we are recovering at home. He will have another wedge resection of his lower right lung (which has a much larger tumor) on April 12th. We are praying that Dr. Lambright has the same amount of success with this next surgery. Vanderbilt has no more treatment options for Brian if this surgery is unsuccessful, or if the melanoma comes back again. Our next best option is to get approved to go to MD Anderson in Houston, Texas. We are planning on the surgery being as successful as this one was.

ICU oxygen walker

Chest tubes are huge!

Breakfast last day in ICU 

Tuesday, December 5, 2017

December 2017

     Apparently, I really suck at this blogging thing! I will try to do better! Brian continues to go without treatment. He had to have a broncoscopy in November due to the Nivolumab making his lungs all inflamed. He had a couple of biopsies done and also had a Lavage of his lungs. That means they washed his lungs! Weird. It appears that his cancer is gone except for one spot in his lower left lung! He will have another CT scan in February, along with a pulmonary function test. Hopefully, there won't be any more cancer at all. The Nivolumab continues to work even after stopping it. The trick is to keep it from making him sicker than the cancer does. 
     We have been traveling...of course! We went to Port St. Joe, Florida along the "Forgotten Coast". We decided they call it that because they forgot to put restaurants and stuff there! We had a good time anyway. We found the world's smallest police station! We also found several cool lighthouses!
     In late October, we met Wayne and Pam in Treasure Island. We stayed at the Cherie Lynn. Beach and sightseeing! They had never been to the gulf coast and they loved it! When they went home Dad and Carol flew in for our second week of beach and sightseeing. Brian was starting to get sick during that time. He tried real hard to be a good sport. 
     We got a new puppy! Another German Shepherd! Her name is Tesla and she is beautiful! So very smart, too! Greta loves all puppies but she's getting older and doesn't put up with her antics much.
     We celebrated our fourth anniversary in November! I am soooooo spoiled! Four dozen roses! Beautiful topaz and diamond earrings! Beautiful Yesterday, Today and Tomorrow necklace! Sigh!






Friday, April 21, 2017

April Update

     So the CT scan wasn't as great as we had hoped for.  One spot was bigger and there is one new spot. On his lung. LDH was over 200...not good. Had a treatment anyway. Very heartbreaking. Two weeks later LDH was 414! Highest it's been since we started. Dr. let him have a treatment but cautioned us that we would have to make a new plan. We left the next day for Florida. Confused, scared, and so very sad. Tired to have a good time in Florida. Stayed at the Satellite with Dad and Carol. Met some new friends. While we were there Mom was taken to ER and transported to Vanderbilt with a golf ball size anyuerism at the top of her left carotid artery! We were all ready to fly home but neurosurgeon said he would operate in two weeks and we'd be home by then. We talked to her repeatedly and she insisted she was fine...and siblings all agreed. We stayed in Florida and talked to her 2 - 3 times a day. We got home on Tuesday April 11th. Mom's angiogram to map her blood vessels was Wednesday morning. Brian's Dr. appt. was Wednesday afternoon. We weren't sure what we would hear from the oncologist. Mom's angiogram went great and they admitted her for the procedure the next morning and we headed over to the cancer clinic at the same hospital...convenient. Brian and Dr. Wyman were discussing treatment options and I was monitoring blood test results. His LDH was down to 186!!!! Dr. Wyman was floored! They decided to continue Nivolumab until June when the next CT is due. If LDH goes up high again they will be able to re-start Ipilimumab...but no one has ever done that before. That's kind of scary to me. That's what made Brian so sick and put him in the hospital repeatedly and trashed his pituitary gland. We shall see! Fingers crossed, prayers constantly!

Safety Harbour Music Frstival

Rock collecting

Cool name!

Sand initials on the beach