My name is John Mai, I'm 34 years old, married(Cathy) with a 5 month old daughter(Emma) and I have Stage 4 Colon Cancer. I'm the youngest one of 8 in my family and both of my parents are nearing 80 with absolutely no family history.
Our story began a little more than a year ago...
We recently got married last year on June 18, 2017 @ Calamigos Ranch in Malibu and we knew we wanted to start a family right away. A few months after marriage in September, we found out Cathy was pregnant!
Starting in July and August, I started having symptoms of constipation, where I would only be able to go #2 every 3-4 days. The pain would build up and last 24-36 hours of extreme pain before I was able to have a bowel movement. Initially, we both thought it was because we recently got married and were eating out so much with all of our family and friends that have been in town. These episodes of constipation would occur every 2-3 weeks and they felt like they were getting worst even with our change to a healthier diet.
Just 2 weeks after we found out we were expecting our first child, I went to see a Gastrointestinal doctor. He put me on a bunch of fiber and it didn't help at all with the constipation. The following week he scheduled me for a colonoscopy where they found a 2 inch tumor in my sigmoid colon. We were told to cancel our honeymoon plans because treatment would need to start right away.
Within just a few days of being given the diagnosis of colon cancer, I was getting CAT scans and PET scans which would confirm that I was Stage 4. They did tell me, that although I was Stage 4 because the tumor had broken through the wall of my colon, it had not spread to any of my other major organs (they just saw some spotting within my abdominal wall).
By the time November rolled around, I already had a port-a-cath placed and was getting my first rounds of chemotherapy (Avastin + Oxaliplatin + 5-fu). The doctors had me on a treatment plan to come in every 2 weeks for chemotherapy infusion for about 3-4 hours and then I would wear a pump home that would administer additional chemotherapy over 2 days and then I would come back in to be disconnected from the pump.
During this time, Cathy and I were between doctors appointments (either for her prenatal check-ups or my chemotherapy treatments). Throughout her pregnancy, Cathy drove me to every single doctors appointments, every scan, and sat by me during every chemo treatment. During her entire pregnancy, I went through 12 rounds of chemo.
Emma was born 2 weeks after my final treatment. The doctors had given me a 5 week break from my last/12th round of chemo so I could spend precious time with Emma.
On July 2nd, I went in for my colon resection and to also have the HIPEC procedure done. I was in the hospital for 2 1/2 weeks and was told that surgery went well. They removed a large portion of my colon where the large tumor was, some spots on my small intestine and some spots within my abdominal wall. The surgeons told me that not only did they removed all visible signs of cancer, but the HIPEC should "clean up" any left over cancer that may have been missed. They also removed 50 lymph nodes to be sent to pathology and miraculously was told that NONE of them had any evidence of cancer. We thought we were in the clear!
Since being discharged on July 17th, I have been following up with my surgeon on a bi-weekly basis. He reassured me that around the 3 month mark is when patients generally start feeling like they're back to normal. While each day my surgical pain was getting better and better (I was using less and less pain meds before stopping altogether), I noticed my meals and ability to eat were getting smaller and smaller.
The 3-month mark came and went and I got to a point where I was, again, completely unable to take anything in without it coming right back up and causing immense pain in my stomach/intestines.
Now, here we are today. I have been in the hospital for 2 weeks now. For a week and half, despite numerous scans, x-rays and attempts at an endoscopic procedure, doctors were unable to see any blockage/obstruction that would cause my vomiting. They did see a pocket of fluid and performed a paracentesis to have the fluid analyzed.
The results just came back a few days ago and we were given the devastating news that they found malignant cancer cells within that fluid. My surgeon said that although they don't see a tumor on any of the scans, the presence of those cells is indicative of the tumor growing somewhere and that it is most likely the cause of my inability to eat. He said surgery is not an option because of 1) the fact that I have quite a bit of scar tissue from my first surgery, 2) he's not sure he would even be able to cut it all out, 3) he's not sure that my body could handle surgery at this point and also 4) that surgery would delay any sort of chemotherapy treatment (if that were an option).
I was told to follow up with my oncologist to see if he has a plan of attack. My surgeon has said that it will definitely not be the same chemotherapy I was given in the past as it clearly didn't work. He also prepared us for the possibility that there might not be a treatment option as my cancer seemed to be resistant to treatment.
Since my initial diagnosis on October 11th, 2017, I have lost about 50lbs, I have been poked with a needle more times that I can even count, I've spent nearly every week at a doctors appointment, I haven't been able to hold my baby girl since she was first born due to the pain and just my general weakness from the weight loss and inability to eat. I am currently living off a TPN and can't take in anything orally without vomiting.
I started my own business 3 years ago and my wife and I both work from home. Since all of this, the time we've been able to work has slowly declined to now stopping altogether. Cathy spends the days here with me at the hospital and then rushes home to be with Emma at night. All of our savings has gone towards medical treatments and we've had to start putting things on credit cards. We are currently in the negative and have no idea what other medical expenses may lie ahead.
Our Goal with this Go Fund Me campaign is to help pay for our current medical debt, upcoming medical bills with the new year and provide financial support for our family during this difficult time so we can concentrate on spending as much time as we can together without worrying about our medical bills that are piling up.
In addition, we hope each and everyone shares our story to as many people as we can in hopes of a miracle treatment we are not aware of.
Thank you for taking the time to read our story.