Alright. Phew.. a lot has happened. A lot. Let me start off by saying I will absolutely have the radiologists medical credentials sealed in a hand bag when I’m done. That fiasco will be dealt with in due time. As for Ryan’s state of being, we were able to get an Oncology Surgeon on board that takes on the hardest cases that no other doctor will typically touch. What we know is that the obstruction in his small intestine was most likely a melanoma met (pathology of course will confirm). It was pretty large, was almost a complete obstruction. Which is why his stomach pain has persisted for a great deal of time now. We now know the constipation most likely wasn’t real. And the pain was originating and building up from the obstruction. He had a large tumor causing the blockage, and two lesions in the same spot higher up in his small intestine essentially turning into the same thing, but they were smaller. The surgeon went in and removed 36cm of bowel - which contained all lesions involved. Those were the only lesions showing up on his PET scan, and they were taken out surgically. Which is awesome. But we all know that doesn’t mean much if the cancer is attempting to make a move. It would be a matter of time until another one pops up if that’s what the devil decides. He is still admitted, but NG tube is now out. NG tube was sucking out any stomach contents that had no where to go. But 1 day after surgery and it was not pulling anything which means it now is taking its natural path. He is in a great deal of pain. Considering he just got his abdomen rearranged. But he is fairing well and will be attempting to walk later this evening. Game plan is to heal as good, and as fast as possible and continue on treatment to keep this monster away. The course of treatment is TBD. Do we stay on Keytruda that eliminated everything else? Or do we try another FDA approved combo. Atezolizumab - Vemurafinib - Cobimetinib. Ryan did not fair well on a dual therapy, so I’m not sure if that will be the course of action. Definitely has to be discussed. Once the bowel heals and functions correctly he will be able to eat without restrictions and go back to normal life. He is happy to be alive. If the surgeon did not take the case, this would have been a life or death situation. Which would quite honestly piss me off.. (obviously..) that the cancer essentially didn’t take him, a complication of a lesion would have. And surgeons don’t like touching stage 4 mets of any kind they would rather systemic treatment until failure. Ugh, anywho. I weaseled my way into the hospital. Which I had to get approved by the head honcho here. But thank god, because I’ve been here everyday he has been besides the first night.
Thanking god today for his continued blessings and yet again another chance to put melanoma to shame. He’s overcome so much, he will continue to do so.
Much love from MD xoxo
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kellyOd
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much and am so happy that you managed both the surgery and the “rule-bending “ so that you can stay in the hospital with Ryan. One of my biggest fears about hospitalizations during this pandemic is the absence
of a family member to speak for very sick patients. Great job, Kelly. May Ryan feel better very soon and then find his next treatment.
Thank you! I try my hardest to protect him.. he’s my person. I used my advance directive card. I said god forbid his situation takes a turn (which in our eyes it took a crazy turn in the matter of 24 hours) I needed to be there to make decisions if he is unable. It worked 🤷🏻♀️ They have a very strict no visitor policy right now. I’m surprised I was able to be approved, but am so so thankful.
You are nothing short of a miracle for Ryan. Thank God he has you to be his advocate, and God Bless that surgeon for taking on Ryan’s case and performing surgery. He was sure a gift from God as well. I can only imagine Ryan probably feels like he was run over by a truck. I am praying he is out of pain soon and starts feeling better and can go home. I bet you were quite the Ninja getting in that hospital. Good for you. I know how much better Ryan feels knowing you are there, and how much better you feel knowing you are there as well.
One day at a time, he has come over another huge hurdle.
I cried to this man and said if Covid wasn’t a thing I would hug him so hard for saving Ryan’s life. God is good, and he shows his presence daily. I couldn’t imagine not being here with him, it would tear me to shreds. Thank you for the prayers, it means so much.. so much. ❤️
You are such an amazing person! Every time I need to advocate I remember you and how you fight for Ryan. I am so happy you got him that surgeon and surgery, and glad he will be better soon. One day at a time is our motto always, another hurdle overcome. Cherish every moment you have together , thank you for keeping us informed <3 Definitely very interested in what next steps could be.
I will keep you guys updated! Thank you ❤️ This morning I had to remind the nurse they can’t do certain things. For example running his two seizure meds at the same time, and making sure they do not put it in his port. They are like “oh okay”.... I have a high school diploma. What in the actual hell.
First time I’ve ever had to use it, but no one was going to stop me from being with him. So luckily he does not, only because it was his small intestine that had the issue. Today he has passed gas which is a phenomenal sign things are taking its natural path through the digestive system. Large intestine and colon were unremarkable. His small intestine was swollen before the obstruction, and after the obstruction the small intestine collapsed. But all was viable and is now working correctly so far! This morning he said to me.. “I think I have time..” first time he has felt this way. He is really in tune with his body. So I’m so happy he feels this way. When he got the false read of a NED scan he said to me that it was wrong before we actually knew it was wrong. Today now that he is passing gas, he will most likely be able to drink clear liquids and perhaps chicken broth to start.
Celebrated and achieved! He is now on a soft diet. But now we are waiting on a bowel movement. Again we will celebrate that too! I’ve been making my poor guy laugh and he hates me for it 😂 using his abdomen muscles. He is in amazing spirits and has pain - but it’s different than the pain he felt before. Post surgical - that will go away and he’s elated. We will take it! Big big speed bump... but small victories. Estimated departure is tomorrow! Keeping our fingers crossed!!
Very frustrating Kelly. I don't understand how incompetent people slip through the cracks in these highly specialized fields. Apparently oversight and peer review have failed in this radiologist's case. Thank God you are there to advocate for Ryan. You are God's eyes on the ground.
That’s exactly what I said to myself and others. It’s beyond me. That’s a very VERY important job, and mistakes like that can cost people lives. mistakes - even small ones can change the game. Have to be on it, vigilant and thorough. I would like to think that god is giving me a smidge of his strength and wisdom so I can use it for good here in the physical world. 🙏🏻
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