Journal entry by Margaret Jones —
Wow, I can’t believe it’s been since October that I posted here. I will be honest sometimes I don’t post bc I am hoping for a better day, or better news, or something joyful to announce. Unfortunately that is not the case right now. It’s been such a tough journey these last 4 months. Charlie continues to be a fighter despite being miserably most of the day. Over the Christmas season it was discovered that his small intestines are covered with cancerous tumors that are not allowing him to eat or hold down much fluid. We are now doing TPN every night while he sleeps. It’s a nutritional bag that goes into his port to make sure he gets all the nutrients he needs. Good news is that he has put on some lbs and hopefully that will continue. The hardest thing right now for him is not being able to eat. Food is his love language ❤️. Here is an update that I sent our family after yesterday’s doctors appointment.
Update from today. 1/10/20
It was not a good day, 😢 but we are still hopeful. Hopeful that the immunotherapy will be effective.
Good news first, the TPN is working and he has gained about 6-8 lbs depending on the scale (home and hospital). Our God is mighty and good news is just that. An answer to prayer!
Now for the not so great news, the PET scan showed a lymph node that now has cancer and a "soft tissue mass" on a muscle going down his back on the left side. That's most likely why he has had back pain for the last few weeks. There was also some opaque tissue in his lungs that might be why he is short of breathe.
The doc said that more or less the small bowel obstruction is the problem bc the cancerous tumors surrounding his small intestine that are compressing it and causing the blockage are overwhelming. The hope is that the immunotherapy he is doing now will shrink those tumors but only about 15-20% chance. There is one more type of therapy "full fury" that might be an option if immunotherapy does not work. We are also in the process of getting second opinions.
The throwing up is really not able to be controlled bc of the blockage. We are going to try adding extra strength Tylenol with his tramadol for pain bc he's not sleeping with all the pain. He can't do much stronger bc of the small bowel blockage. Opioids cause constipation and he can't afford for that to happen. We are also going to go back to tums throughout the day to see if it will help with the acid. The nutritionist suggested this.
The doc mentioned a venting peg tube to release the throwing up but Charlie does not want another surgery to put it in or a tube hanging out of his body. He said he would rather throw up. I don't blame him. He hated the tube drain (PluerX catheter)he had this summer.
So that's it I think. Not really a good visit considering nothing's gotten better but his weight, but we are holding out hope that the immunotherapy works (they said slowly) and these dumb tumors will shrink and give us some hope for more time. Please pray specifically for this therapy to work it's magic and get him some relief and for Charlie's mental health as well. It’s very overwhelming what he is facing day after day.
CANCER SUCKS!
I wish cancer would get cancer 😡🤛🏼.
Please continue to pray for all of us, but specifically for the immunotherapy to kick these tumors butt so that he can regain the ability to eat and drink and get stronger. We appreciate all your love and support. Our community and family have made all of this much more tolerable.
Happy new year!
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