Felix's GoFundMe Diagnosis story

 

Felix 2 months before his diagnosis

On December 20th 2017, Felix Brow-Westbrook was diagnosed with Mesothelioma cancer and recommended for immediate aggressive surgery to remove his left lung, the lung pleura (lining of the lung), the lining of the heart, and part of the diaphragm.

Below is the story of how he came to be sitting in New York Presbyterian Hospital hearing this news.




Felix's Story
After feeling tired, short of breath, and coughing almost constantly for months, Felix decided to seek medical treatment. Having no health insurance, he visited a free clinic in NYC. The doctor listened to his lungs, said they sounded "clear" and sent him on his way with a $90 Albuterol inhaler.

When the inhaler failed to offer any relief, a diagnostic radiologist friend of Felix's asked him to come in to his practice for x-rays. The x-rays showed a massive pleural effusion around his left lung that had collapsed it. He immediately had a CT scan which showed a thickened pleural lining (the lining around the lung) and other concerning findings. Felix needed a biopsy done as soon as possible. His friend said that Lymphoma, Carcinoid tumor, and Mesothelioma needed to be ruled out.

While waiting for his appointment Felix continued to work at his new job as a Window Display Coordinator for Anthropologie designing the spring window. Felix also signed up for health insurance through the marketplace.

Felix and I made the trek from Long Island to Governeur's Hospital in lower Manhattan for his biopsy appointment on December 7th. We were told that they did not take Felix's new health insurance and that he would be immediately sent to the ER at Bellevue Hospital to have his effusion drained because it was too big to biopsy without draining it first. Felix immediately called a Lyft to the ER at New York Presbyterian Hospital/Weill Cornell on the upper east side.

As soon as Felix's vital signs were checked, he was told that he had no breath sounds on the left side and he would be admitted immediately to have his effusion drained. In spite of only one lung working, he had excellent oxygen saturation at 99%.

After hours of speaking with various nurses, doctors, and patient service employees Felix finally got a stretcher in B Bay to wait for a room in the hospital. He was told he would have surgery the next day to drain the effusion and probably take samples for biopsy.

I decided that I would wait until Felix got a room before going back home. I would return in the morning to be there for his surgery. After 10pm, I decided I better head back home so I could be back early. I took a Lyft back to Penn Station, got a burger, and was just sitting down on my train when Felix texted that they were about to start the procedure to drain his effusion. It was too late to head back to the hospital so Felix had to undergo the scary and uncomfortable procedure alone and still in the ER.

The next day, after getting home from work around noon, I was surprised to find out that Felix was still in the ER. Then I was angry to find out that he hadn't been fed yet. I grabbed some food from the house and headed to the hospital.

When I got there I found his room in the ER to be a mess with his clothes all over the floor, his empty food tray on his trash can, his portable urinal full, and his water pitcher empty. I cleaned up his room, got him some water, and emptied his urinal.






Next to Felix's bed were 2 cases filled with about 3 liters of fluid drained from around his lung, one case was still connected to a tube coming from his chest. My heart sank when I saw the color of the fluid coming from his chest tubes. It was an orange color from the blood. I knew that, combined with the size of it, made it more likely to be cancer. I tried to dismiss the thought from my mind.







Again, I decided to wait until he was given a room and again it got too late to stay. I decided that I would leave and come back the next day.

I woke up the next morning at 10am to Felix texting that he was still in the ER and had never been assigned a morning nurse. He had not eaten or been given water, his chest tube hadn't been flushed, and his urinal hadn't been emptied. He couldn't get up to do things for himself because his chest tube was attached to suction coming from a machine on the wall.

I said that I could come as soon as possible but that he should ask a friend who could get there sooner to come help him. He contacted his friend Zak who came right over.

Zak was horrified at the conditions he was in. In the hallway a woman in pain with sciatica cried "help me" every couple of minutes for hours. He cleaned up Felix's room and vowed to get him out of there. He went to patient services and helped Felix fill out the paperwork to pay for a private room. Once in the hospital it would be easier to get a regular room.

Felix called his dad and stepmom Kristin to come to the hospital. They waited with him until he was put into a private room on the 14th floor about 11pm on Saturday December 9th.

At this point Felix had several teams of doctors working on his case. Now that the effusion was drained they decided that they needed to get another CT scan. Felix had his scan on Monday December 11th. I visited him later that day with beef stew his stepdad Frank had made him and a piece of his sister Bekah's coffee cake.

Based on the results of the CT scan, one of his doctors, surgeon Dr. Stiles, decided that he should have a PET scan to get a better idea of what was going on for a diagnosis, and for staging if he ended up with a cancer diagnosis.

He said if only his pleura reacted it would indicate cancer and if only his lymph nodes reacted it would indicate infection. I asked what would it would indicate if both lit up. Dr. Stiles said then they wouldn't know and would be back to square one.

The next day the results came back with both the pleura and the lymph nodes reactive. I kept asking if they used any type of measurement to determine the severity of the reaction and if the difference in the colors on the PET scan were significant, but the doctors brushed off my questions.

The doctors decided to do Video Assisted Thoracic Surgery (VATS) to biopsy. I decided to sleep at the hospital that night so that I could be there for the surgery.

Since Felix was on the VIP floor, they rolled in a bed for me, gave me some pajamas, and let me order from Felix's menu.

Felix was scared, but strong, for his VATS surgery. I wasn't allowed to go down with him and I still have the image of him looking back at me as they wheeled him out of the room in my head.

I waited and waited and waited for Felix to come back to his room. Finally, 6 hours later his nurse told me that he was asking for me in the PAC Unit. When I got there, it was obvious Felix had been crying. He was reacting to the anesthesia with sadness and feelings of doom.

The doctors were trying to figure out if he could return to the 14th floor for recovery or if he had to go to the 4th floor surgical recovery floor. Felix got even more upset and said, "but I will miss everyone on the 14th floor."

Eventually, Felix was allowed to go back up to his 14th floor room. 

By the 16th Felix was getting anxious to get off of all the machines tethering him to the bed - heart monitor, blood pressure cuff, IV, 2 chest tubes attached to suction, oxygen-sensor, and so on. He managed to convince them to take him off of his IV for a little while, and later that night he had one of the chest tubes removed. It was shockingly longer than he thought it would be. On the 17th the second chest tube came out, and all the monitors were unhooked.





On Monday the 18th Felix's brother, Frankie, and I came to visit.. Felix told us about a scary dream he had had in which a big green lizard with red wings landed on his upper left chest area. By this time, a team of infectious disease doctors had been added to his case and it seemed like they were moving towards an infectious disease cause.

The infectious disease team asked a lot of questions and ran a lot of tests. They were especially interested in Bartonella. We also talked about the possibility of Babesia.

On December 19th the doctors said that Felix had a 50/50 chance of being discharged the next day. They said some of his findings showed hypercellularity and they were just waiting for pathology results to come back. It was possible that he would be held for immediate treatment, but they didn't say for what.

Our family always does a Sibling Secret Santa exchange. We had planned on drawing names and decorating the Christmas tree with Felix that weekend. Since Felix was still in the hospital the kids drew names by Facetime. Felix also came up with new ways to wear his hospital gowns.





















On Wednesday December 20th 2017, Felix told me to come down to the hospital because he thought he would be discharged soon. He said pathology results were back. Thinking that I would be bringing him home, I left my house prepared only for a short trip.

I got to the 14th floor and immediately needed to use the bathroom and get some cucumber infused water. Felix seemed to be acting normally and was in good spirits. I sat down in the chair across the room from him and asked if they had given him any pathology results. It was then that Felix told me that they had and that he had Mesothelioma.

I could not believe what I had just heard. I ran across the room and hugged him as my mind struggled to comprehend the information. I texted Frank and then spoke to him on the phone as he cried. Jeff called me, also crying. I tried not to fall apart in front of Felix. To this day, it doesn't seem real. I keep thinking that there must be some mistake.

Post Diagnosis
Not long after receiving this news, a team of doctors came in to talk about treatment options. Felix would not be discharged because they wanted to hold him to do an aggressive surgery called an extra pleural pneumonectomy or EPP. This surgery would remove his entire left lung and pleura, the lining of his heart, and the left side of his diaphragm. Dr. Stiles felt that because he's young and otherwise healthy, that this would be a better option than a pleurectomy/decortication surgery which removes the pleura and any visible tumors but spares the lung.

The doctors also explained that Felix was diagnosed with biphasic Mesothelioma meaning that his tumors showed both epithelioid and sarcomatoid cancer cells. They placed his staging at Stage 3.

While still reeling from this highly emotional diagnosis, we were left to try to understand highly complicated medical information and opinions and make decisions based on it.

The surgery was scheduled for Wednesday December 27th. In the meantime, Felix would undergo extensive pre-surgery testing. Instead of taking Felix home, I stayed at the hospital.

Since Felix would be in the hospital for Christmas Eve and Christmas, we focused on how to celebrate with him. It was important to me to have family and friends there for him everyday. We decided that his siblings and Frank would visit on Saturday and I would go home with them for Christmas Eve on Sunday.

Zak talked to the director of food service for the 14th floor and arranged a Christmas Eve dinner in the private dining room.

Several people had been emailing that we should consult with a Mesothelioma specialist. On Friday the 22nd Felix got a call from a friend saying that he had spoken with Dr. Raja Flores at Mount Sinai Hospital and he was willing to meet with me if I could get his medical records before Dr. Flores left for vacation at 3pm, preferably by noon.

This was a near impossible task for a number of reasons. For one thing it was a Friday before Christmas weekend. Also, hospitals don't typically give you your medical records or send them anywhere while you are still in the hospital because they are considered incomplete. Another factor was that it typically takes a while for records to be copied. Thankfully Felix was on the VIP floor and I was able to go to the concierge desk and tell them exactly what I needed done.

While concierge started the paperwork and calls necessary to get the medical records and a CD copy of the scans, I got dressed. The woman helping me at concierge first walked me down to the medical records department to impress upon them the urgency of the situation and then to pick up the CD of the scans. I then jumped in a lift and headed to Mount Sinai.

As I got there, Felix's medical records were just being received by fax. Dr. Flores met with me immediately and though he needed to get to a meeting before heading out on his vacation, didn't make me feel rushed. He was knowledgeable and compassionate. He was clearly very intelligent but not arrogant. I asked if he would reach out to Dr. Stiles to discuss Felix's case.

I jumped back in a Lyft and headed back to NYP to hear from Felix's teams of doctors there. When I got there, there were about 10 doctors in his room. Thankfully, Kristin was there and had taken notes. Dr. Stiles said that he had already talked to Dr. Flores.

The next day Frank brought Bekah, Lillian,  Jack and Luke to visit with Felix. I had asked Frank to bring Felix's Christmas stocking from home so that we could fill it and have the overnight nurse leave it for him. Since Bekah and Felix had gotten each other in the Sibling Secret Santa exchange, they also exchanged their gifts. Bekah gave Felix a bonsai tree and Felix had Jeff and Kristin pick up some fine art markers that Bekah wanted.

While the kids played Family Feud, Frank and I went up the street to get stocking stuffers and a gift for Felix. Shopping options were limited, but we found everything at Papyrus. We had our gift wrapped and bought extra wrapping paper for his other gifts. We left them hidden with a present Frankie had gotten for him under the concierge desk. The plan was that Jeff, Kristin and Zak would leave everything else with concierge after the Christmas Eve dinner so that Felix's night nurse could leave everything for him as if Santa had come in the night.








Felix's Christmas Eve dinner was magical! Zak had arranged for the executive chef to make a glazed ham, truffle mac 'n' cheese, and roasted brussel sprouts. Zak made a pumpkin pie and the chef whipped fresh cream for it. In addition to Jeff, Kristin, and Zak, Felix's friends Eli, Farkan, and Khaled and Zak's friend Trent came to the dinner.

Eli stayed over Christmas Eve night. As planned, the night nurse Christina snuck in to leave the stocking and gifts around the tree. Her shoes were too squeaky so she tiptoed back out and took off her shoes before completing the mission.

Felix opened his stocking in the morning. Jeff and Kristin came over and he opened their present. When they left Kristine, one of Felix's other nurses, invited Felix to the staff holiday mixer.























I got to the hospital later with gifts from Frank's family. Felix opened his presents by Facetime with Frank and the kids.

Since the surgery was scheduled for December 27th, the 26th was a big decision making day. We had to decide if we were going to go through with the EPP surgery at NYP with Dr. Stiles or hold off so we could consider other options, especially transferring care to Dr. Flores.


Kristin, Eli, and I talked all day Tuesday weighing the various options. We made lists of pros and cons. For me it became more and more clear that we should wait as we talked it out. If we went forward with the surgery the next day, we were making several decisions in one- when the surgery would be, where it would be, what kind of surgery it would be, and who the surgeon would be. If we waited, we were only deciding on when the surgery would be as we considered other options.

For me, a lot of it also came down to the continuity of care after surgery. We knew ongoing oncology treatment wouldn't be at NYP because they didn't have any Mesothelioma experts. Dr. Flores would stay involved with Felix's case and work closely with the oncology radiologist.

After an exhausting day of debate, Felix asked if anyone had any tarot cards. Nobody did but Eli had some playing cards that could be used. Eli did a simple 3 card spread and the meaning couldn't have been more obvious. The cards said not to rush into anything and to consider all the options.

When we told the doctors the next morning that we were going to wait on the surgery, Dr. Stiles came up with an excellent new plan to do a mediastinoscopy surgery to remove lymph nodes for biopsy to see if the cancer had spread. Dr. Stiles said that we could schedule the EPP surgery for January 9th which would give Felix time to have some fun and consider other options.

Felix had the surgery that day and was discharged the next day. Later, his lymph nodes came back negative.

I made an appointment with Dr. Flores for January 4th, and got to work getting Felix's pathology slides over to Dr. Bill Travis at Memorial Sloane Kettering for a second look. In the meantime, Felix's Medicaid health insurance went through, retroactive to December 1st.

A New Plan
Felix, Jeff, Kristin and I met with Dr. Flores and everyone loved him. He was confident and had a positive outlook. He felt that he could spare the lung and do a pleurectomy/decortication surgery but he wouldn't know for sure until the actual surgery. He has the experience and expertise to make that type of decision on the spot. At the end of the appointment, he hugged Felix and said "I've got you."

Felix is now scheduled for pleurectomy/decortication surgery on Tuesday, January 16th followed by radiation.

** This is Felix's story as it appeared on his Help Heal Felix from Mesothelioma GoFundMe page**

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