Help support the Morgan family as we battle cancer

My 40 year old husband has been told he has less than three months to live. He has been diagnosed with urothelial carcinoma which has spread to his lungs and bowel.  Below, I will put a (not so) brief summary of what has happened to us so far.

I have to keep fighting for him so he can be around to watch our 5 year old son grow up. He has been told that there is no way they can treat him any further. There has to be a way.

We need help with medical bills and day to day bills. He was the sole provider in our household and we have gone through all our savings. I am trying to keep his business afloat but I’m spending all my time in the hospital with him or driving 3 hours round trip to get to the hospital. Any help would be greatly appreciated! 

At the beginning of April, he couldn’t urinate for 24 hours, went to the ER, had a CT scan (or ultrasound, can’t remember which for sure), they found a mass that they were pretty sure was bladder cancer.

End of April, we had already had a preliminary appointment at Moffitt Cancer Center and he had a procedure to remove some of the tumor and get a sample to be tested. They ended up taking much less of the tumor than they had planned on. They sent it off and it came back as adenocarcinoma.

Middle/end of May, he started Folfox chemo. He had infusions every two weeks, 4 treatments, total of 2 months.

End of July, his original rounds of chemo were completed, they said the tumor had shrunk significantly (which they also later said was not the case)  and they scheduled bladder removal for September 3. They also scheduled one more round of chemo at the beginning of August.

September 3rd, he had his RC surgery. They removed his bladder, prostate and some lymph nodes. They said there was a small spot on his bowel that they removed as well. They were able to make a neobladder for him. He recovered in the hospital for a week and came home.

Second week in September, he came home and went back to the hospital about 8 hours later in extreme pain. Turned out to be an infection that they treated with vanco. He was in the hospital for another week.

Third week/end of September, it starts to be a blur. He ended up having another infection and was back in the hospital for a week or so.

End of September/beginning of October, he was finally infection free, he got his Foley out and started using his neobladder. Things went surprisingly well. He was able to urinate normally with very little residual.

We had a peaceful few weeks in October, things were going well until we went back and spoke to the oncologist again for one of the first times since the surgery. He said that it appeared that the chemo had not worked and the cancer was starting to spread. The next day, he called us and said that his cancer was not adenocarcinoma but instead it was urothelial carcinoma and that’s why it was spreading, because he was treated with the wrong type of chemo. I had seen this on the pathology report back in September and brought it up at an appointment but they didn’t address it at the time. They said the reason that it was not diagnosed as that to begin with is that the sample they had back in April was too small and that adenocarcinoma can look similar to urothelial carcinoma. He said they needed to see what kind of chemo they wanted to use and planned on starting it on November/December after another CT scan.

Last week in October, he started throwing up constantly. He went in, they admitted him and diagnosed him with a partial bowel obstruction. After about a week, he was sent home on a GI soft diet (I believe that’s what it’s called?) even though he had only had one bite of solid food before he was discharged. He was semi-okay at home for a little while, eating a few bites of food a day.

First week in November, he had a CT scan and appointment but was not feeling well anyway. He ended up being admitted and getting a g-tube placed for drainage and was only allowed to drink clear liquids. He was sent home after about a week and a half on IV nutrition.

Five days later on 11/27, he had an appointment scheduled for his first infusion of GemCarbo, I believe. We were on our way when I checked my phone and saw the infusion was cancelled. We went anyway and he ended up being admitted. He had been having breathing problems and wheezing after any activity, even getting up to go to the bathroom. They found fluid on his lungs and small blood clots. They drained a liter of fluid off of each lung.

Since then, he’s been in the hospital. Wednesday the 4th, he got his first round of the new chemo while he was in the hospital. The next Thursday night/Friday morning, he became extremely weak. He was on 4 units of oxygen and was only able to sit on the side of the bed for a couple minutes, he was not walking at all. They said there was a concern about how his kidneys could handle a diuretic that would help the fluid that was now building slowly inside his lungs. He was moved to the Progressive Care Unit on that next Tuesday and started the diuretic as well as breathing treatments. Almost immediately, he was breathing better and much stronger. After about a day, he was transferred back to a regular room.

I spoke with the oncologist by phone on Wednesday and he told me that he has three months to live. He does not believe that continuing with chemo is beneficial because it would be hard on his body and may cause him to pass sooner. He said that the chemo only has a 10% chance of slowing the cancer growth. He said he wouldn’t even be considering the chemo if my husband was older (he’s 40).

At this point, he is bedridden because he is too weak, has a left nephrostomy tube (they tried to place one in the right, but could not position him to do it safely), an NG tube because his G tube came out and they were not successful in placing another one and is still on IV nutrition. His kidneys are getting better, I don’t know what the number means but it was over 2 and now it’s down to at 1.7 and they’re cons him stable in that area. They said the kidneys were the biggest hurdle we had to overcome before they would try chemo but that WBC and platelets are also a factor. Fluid is continuing to accumulate on his lungs but they never placed a drain that could drain the fluid on a more consistent basis. They say the cancer is in now in his lungs and bowel (probably causing the obstruction). I have not spoken to the oncologist since last Wednesday but his team seems to think that chemo is completely off the table no matter what, as well as any other treatments.

My frustration is that he has not been treated for the type of cancer he actually has and I can’t understand just letting the cancer continue to take over his body when we don’t know how he would respond to treatment. Again, any support is greatly appreciated.