John Mai - Stage 4 Colon Cancer
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.
Holy Cross Cemetery
5835 W. Slauson Ave
Culver City, CA 90230
**Use the main gate/entrance and proceed to section FF indicated on map (top right corner)**
My heart weighs heavy wondering how I'll ever be able to convey how much John loved Emma and how hard he fought to stay and be able to watch her grow up...all the dreams and hopes he had for her. He tried so hard to be able to write a letter to her for each milestone (birthdays, graduation and her wedding day)...but in the end, the cancer wore down on him and he never was able to. If I could ask anything of those who knew him best...is to help me keep his memory alive for his beautiful baby girl. The hospital gifted me a journal after learning that John was never able to write the letters to Emma. I am hoping to have the journal filled with memories and stories from those who knew and loved John...all the things Emma should know about her daddy, and one day I'll give that journal to her so that she'll always know what an amazing and wonderful person he is. I will have the journal with me at his viewing, prayer service and funeral mass. You can always text or message me, stop by and pick it up anytime to write in it or to put in photos you think will help Emma see how amazing her daddy was.
I'm still having trouble getting the words out, but I know many of you have been asking and wondering about his services. Thank you again all so much...you'll never know how much all the outpouring love really helped lift him in these last few months.
Wednesday 1/23/2019 4PM-7PM
McKay's South Bay Mortuary Marine Chapel
3918 Marine Ave.
Lawndale, CA 90260
Friday 1/25/2019 @7PM
St. Catherine Laboure Church
3846 Redondo Beach Blvd.
Torrance, CA 90504
Mass & Funeral:
Saturday 1/26/2019 @9AM
St. Catherine Laboure Church
3846 Redondo Beach Blvd.
Torrance, CA 90504
Holy Cross Cemetery
11298 Playa St
Culver City, CA 90230
At this current time we can no longer accept visitors to see John after 4PM today. The neurologist has declared John brain dead and we will have to withdraw all life-sustaining measures at 5PM. We will be bringing the family in at 4PM.
On behalf of the whole family, we thank each and everyone of you for the continued love, support and prayers. Please give our family the time to grieve and process and I will update again when I can.
I don’t even know where to begin with this update or how to even find the words…
On Saturday Jan 12, John’s oldest brother and I were preparing to take him home. John’s palliative doctor came to see him once last time before leaving and ask him how he felt about going home, and John expressed that he was nervous/anxious about how the car ride would be, but that he was ready to go home. The doctor said he could give John something to help him relax and maybe sedate him a bit for the car ride so that it’d be more comfortable.
When John’s brother was wheeling him out to the car, we noticed that he was already becoming pretty sedated. His brother and the nurse helped to lift him into the car, while I sat beside him to monitor him. We put on his oxygen mask and started on our way home. As we started the drive home, I noticed he was starting to breathe a little strange…he was taking deep breaths with long pauses in between. I was asking him “honey, are you ok?” But got no response. I held his wrist to check his pulse and felt a regular heartbeat. Eventually he breathing became more even and me and his brother figured he was just really sedated from the medication.
We made it all the way home and proceeded to carry him into the house and put him into a wheelchair to wheel him into our bedroom. His brother was pushing the wheelchair while holding him upright so that he wouldn’t slump forward. I was following right behind with John’s IV pump that was delivering him his pain med, along with his catheter and G tube foley bags. Once we got to the bedroom, I told his brother to spin the wheelchair around so that when we lift him out of the chair and on to the bed, his head would be facing the right direction. I placed all the things I was carrying on the ground and when his brother spun the chair around, I immediately noticed that he wasn’t breathing.
I felt for a pulse, but couldn’t find one. I then immediately called 911 and started CPR on him. The paramedics arrived just a few minutes later and took over CPR for me and asked if they should continue resuscitating considering that he was home on hospice. I told them, YES. Then a police officer led me out of the room so that “they could work on him”. A few minutes later (can’t remember how long), one of the paramedics came out and told me they were able to get a heartbeat back.
We were immediately rushed to Little Co of Mary ER where the ER doctor and team started working on John right away. The ER doctor asked me again if they should continue resuscitation efforts, to which I said YES. John ended up needing to be defibrillated and intubated in the ER. With the help of medications, the doctors and nurses were able to bring his heart rate and blood pressure to a normal range (it was VERY low). They did a chest x-ray and sent him to have a CT scan of his head. They informed us (myself, my mom who rushed in and John’s brother) that anytime someone goes under cardiac arrest, they have to do a head CT to check for brain damage.
We got the results back and were told that John had significant brain swelling and their best guess is that his brain went without oxygen for some time. They told us that they would continue to keep him on the medications to help his heart, the ventilator to help him breathe and that they would continue to monitor him but that if he couldn’t regain consciousness or wake up within 2 days, that it would be unlikely that he’d wake up at all.
On Monday, the palliative team had a meeting with me, his parents and my mom to tell us John’s current situation and to find out what we would like to do. From Saturday, despite tests they would do every few hours to check if John would have any sort of reaction, they weren’t seeing any. They informed us that the longest period they could keep the intubation tube in was 14 days. After that, the tube would need to come out and the only other means to assist John to breathe would be to do a tracheotomy and surgically place a tube into his throat.
We decided that we didn’t want John to go through that, but his parents and my mom wanted to wait the full 14 days to see if John can wake up on his own at all. Afterwards, if they tube has to come out, then it will come out and whatever happens, happens.
We’ve been having his family come in to visit and talk to him. Previously, John wasn’t allowing any visitors to the hospital because he didn’t want anyone to see him so sick, but now the family and I feel it’s best for everyone who wants to come see him, to come visit and talk to him, help him to wake up. Any request to want to come visit with him, please text me at (424) 324-0903. Texting is better as I can’t always answer my phone.
Also, please know that the ICU floor of the hospital normally only allows 2 visitors per patient at a time, however, given the situation, they have made an exception for us. That being said, it is still quite a small room and I would ask that we have no more than 4-5 people come at a time, so it is very important that you first set up a day and time with myself (or John’s family) before coming in otherwise they’ll kick people out. There’s also no children under 12 allowed in the ICU, so please plan accordingly.
Please continue to pray for John, for us…we are still praying for a miracle for him. We still have faith that he’ll be able to wake up from this. Thank you all and please understand if it takes me a bit of time to respond and please also understand that this is quite a difficult time for us.