Major Decisions

Five days in the hospital . . . Let me just say, “WOW”. 

As I’ve been talking a lot about lately, Johnny’s fluid balance got the best of us once again which landed him  in the ER with an admission to the Oncology floor.   

Last Saturday was Matt Brawley’s (and Mrs. Brooke Brawley) wedding. Johnny was adamant that he was going to that wedding. He wouldn’t take no for an answer, and to tell you the truth I didn’t try really hard to say no.   

He complained all morning about excruciating stomach pain across the middle of his abdomen. I knew he was terribly dehydrated, too. After Matt and Brooke’s beautiful wedding, I brought Johnny home and before he even got back into bed, he said, “I need to go to the hospital.”    

I knew it was bad if he was telling me. 

In the ER, they started him on fluids and drew labs, etc. We knew from the last abdomen CT that he had an inflamed pancreas and now we had reached full blown pancreatitis. Don’t ever wish pancreatitis on your worst enemy. It is terribly painful, and treated mostly with “gut rest” or in other words no eating or drinking.  

Over the course of his admission, we reviewed his medications and pain management and have made several changes where that’s concerned. Improvements have all been working nicely.   

Chemotherapy was scheduled for Monday morning, but since he was inpatient, we obviously didn’t go. Instead, Dr. Ansari came to us. We had a long heart-to-heart. Dr. Ansari explained to us that we can see on the CT that Johnny’s belly is fully affected by cancer now -- lymph nodes are getting even more involved, there is inflammation of the entire mesenteric area and his pancreas is terribly inflamed (although not yet invaded by cancer). There are now mutliple nodules in the lower lobe of his right lung and the chest lymph nodes are increasing in size and number.    

We are losing the fight.   

The difficult decision to stop all chemotherapy was made. Dr. Ansari said he didn’t want to go back to the infusion center to tell the girls, because they all have fallen in love with Johnny. Who could blame them? 

I asked if we were still on track with the time frame he had initially told us in May, which was about 6 months. He said at this point it looks like 2-3 months, but Johnny is a strong-spirited guy and didn’t commit to a definite number.   

Johnny told him that he wanted to go home and Dr. Ansari agreed and said that as soon as the pancreatitis had calmed down we could go. When that time came, he said that instead of having Johnny come back to the ER every time he needs fluids, he wanted us to go home with Hospice Care.    

Hospice? Oh my God, that is for people who are dying. And my Johnny needs Hospice Care? How did that happen so soon?    

We have met most of his Hospice Team, and if you’ve ever heard anyone talk of Hospice and how amazing the people are, they are right. Every encounter we have had so far has been incredible. Johnny’s comfort is the number one concern. They told me, “We are your 911 from now on. You call us day or night when you have a need. We are here for you, Johnny and the boys.” It is very calming to know I can keep Johnny here  and they will come to him if he has another crisis.   

Johnny is feeling much better, but still sleeps most of the time. When he wakes, he is usually talkative and jokes around. When he is listening to conversation, his eyes are closed, but he stays involved in the conversation. 

Please pray really hard for the boys right now. They understand that our time is short and it is becoming so much more difficult knowing that saying a final goodbye is creeping closer daily. Quinn is wearing his emotions on his sleeve and tries so hard to be brave and strong. The two of us had a good talk/cry together last night and I know that eventually we will all be fine again. I love that he loves his dad so much and we talked about how lucky he is to have a dad that has been involved in his life from day one. His uncles will all foster his love of hunting and fishing and he is such an “old soul” that I know I will be able to lean on him on days when I feel I can’t stand on my own.   

Jake tries to stay involved with his friends as much as possible and still manages to keep himself involved with Johnny, although to a less physical degree than Quinn. Jake’s network of friends and “other mothers” will make this situation more tolerable for him. I’ll also be able to lean on Jake and his humor when I am having bad days.   

Together the three of us are invincible.   

Lately I have been reading a lot and working on finding peace and understanding. I know I am a strong woman and will eventually (with my boys) be ok. I refuse to ask, Why me? Or Why Johnny? That just doesn’t make anyone feel any better.     

I will spend the rest of Johnny’s days making it my duty and my honor to help him feel the best he possibly can.   

We still love to have visitors, but I know you will all understand when I say that I have to limit the number of visitors per day/week. If you are interested in stopping by, please just give us a jingle first and we can determine if it is a good time or not. I know you will understand if it just isn’t a good day, and we will try again later. Also, please understand that sometimes we don’t answer the phone (We do not have caller ID, so we aren’t screening, I swear!). We may both be sleeping, talking, or just not in a position to carry on a conversation. Leave a message, or try another time. We want your calls! Promise!   

Thanks to everyone who have asked about my legs. This I can tell you: One broken ankle sucks, add to that a broken foot and it is downright cruel. I am please with the answer to my prayers to stay home with Johnny, but struggle with how badly my physical body has let me down. Nighttime is the worst because by then the cam boots feel like I am wearing my dad’s snowmobile boots with lead weights in them. They are heavy, hot, and annoying. Especially when the Velcro sticks together and I can’t get my legs apart in the middle of the night. I’m telling you, someone should put a secret camera in my room if they want to win AFV’s $100,000 grand prize!    

My multitude of thanks continues to everyone providing comfort for my family. Whether it is food, prayer, visits, whatever . . . Thank you so much.