Update on Ben
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Dear Tom good decision and have a great time. A Caregiver needs a break now and then and I am very proud of you! But please enjoy!!! Safe Travel too.
Thanks everyone for your advice. I am sitting on the plane right now heading for home. It was a very difficulty decision to leave as Ben is still in the hospital. He now has fluid in his right lung that they plan to drain, and he still may need an ERCP to put another stent in, but remarkably he looks good and I do have a lot of support for him while I’m gone.
Melinda, I can’t believe you read through all six pages (I tend to write a lot when I am out here, just not very frequently). Marion, I’m trying to let go oft he guilt….I do know it’s good for me and if anything happens I just have to jump on a plane and come back.
Julie, I’m headed your way….I’m originally from Sioux City, Iowa and that’s where I am going so I will wave as I pass over you there in Marion.
Thanks everyone for all your support.
Tom
Tom, The decision to go or not is a tough one, but Ben will be in good hands if you go. IMO, I think the time away will bring you back home to Ben more refreshed. That is a win-win for both of you. If you do go….plan to go and enjoy. Take a lot of pictures to bring back and share with Ben too. It’s good to have something fun and upbeat like a wedding about which to talk.
Julie T.
Tom…..We have had some incredible stories related to the surgical re-routing of the biliary system. Although (generally) not anticipated leakages occur with some and yet not other patients. A surgeon once mentioned: I will do the best possible and await the patient’s response to the surgery. Guess, Ben is responding in his own way.
Please let us know the outcome and please, please consider attending the family wedding minus the guilty feeling. You deserve a break too.
Hugs,
MarionDear Tom and Ben, Just read through all 6 pages of your posts and will include you both on my prayer list. I know it is trite to say, “Stay strong”, but you have so many people pulling for you. Sounds like you’re getting good care. I agree with Lainy, although it is definitely your decision to attend the wedding, I would advise you to go. Ben’s sis in law will, I’m sure, take great care of him and will let you know if there is anything to bring you home. Caregivers really do need some time away to recharge and be ready to face the next chapter.
Positive energy and healing thoughts to you both.
MelindaDear Tom, yikes, I have never heard of that kind of drainage before but plastic stents sound like a good plan as they are easily changeable. Teddy had to have his exchanged every 2 months or so to keep them from getting infected. To go or not to go……to a wedding. As long as Ben is doing OK and someone is there why should you not go for a few days. You have to be kind to Tom too. But you have to make that decision. Hope they can find out where that ‘muck’ is coming from. Love to Ben!
So, Ben had a procedure today to drain the abscess on his liver. HIs GI doctor was surprised because he is draining bile vs. pus and he wasn’t sure why that is happening. Tomorrow, they are going to inject dye in him to see if there is a backup somewhere….the last they looked it didn’t appear his stents were blocked, and his bilirubin has been low(ish), around 2.8. He said they may put in another stent, plastic this time….he said if he has to keep going in he might as well use plastic. Up until this year Ben has had good luck with his metal stents, but I guess after 4 years (wow, hard to believe it’s been 4 years), I guess they are bound to have some issues.
I did some searches of liver abscesses and i do realize they are common, but couldn’t quite tell if anyone had bile come out vs. pus.
I’m also supposed to go home for a family wedding on Thursday. I haven’t been home in two years and I’m feeling guilty if I decide to go (Ben’s sister in law is staying with us in case I decide to go….and she is insisting I get away)…..but I just don’t know.
Another day of fun
Hi Tom,
Thanks for the update on Ben. Hope Alaska was good and grrrr to abcesses, big grrrr in fact! Hope that the med team get to the bottom of this and get it dealt with asap. Let us know how Ben gets on with this and yes, another bump in the road but I know that you guys will be able to deal with this!
My best to you and Ben,
Gavin
Tom……abscesses are not unusual with this diseases. You are so right by reading up the individual postings on this subject – tons of information here -. Please keep us posted and hang in there, but then we already know that you and Ben will do just that .
Hugs,
MarionDear Tom, I don’t get it. You travel to Alaska and all was fine, Ben comes home and bada bing bada boom, he lands back in the Hospital. His ONC is just like Teddy’s was and I love that. Hoping that Ben recovers quickly and can continue his Chemo. Please let us know how his CT goes. You know I am wishing you guys the very best!
So – here I am again exactly one month from my last post and I think I must be in Groundhog Day. Ben recovered pretty well from his last infection and restarted chemotherapy on 8/26 (GEM/CIS). All was going well until this past Wednesday – 9/3 when he started getting a fever again, it started as a low grade fever in the morning and his Oncologist ordered blood tests and Leveaquin to try to get ahead of it without sending him to the hospital.
Unfortunately, the fever elevated quickly that day and a few hours later he had spiked to 103.9 – yikes! So, obviously off we went to the ER (at least this time it was 4:30 in the afternoon vs. his usual 11:00 PM at night). Anyway, once again he was admitted and the fever was brought under control relatively quickly and he’s being treated with broad spectrum antibiotics (Vancomycin and Merrem).
For an added twist Ben through in some low platelets. On Tuesday at his checkup with the dr. his platelets were 89,000 – by Thursday they had dropped to 29,000! So, they did a blood transfusion (well I call it an “infusion”….as they just gave him blood – didn’t take any out).
As of today (Friday 9/5) his platelets are on their way back up and he looks good. Doctors are still trying to determine the source of these infections. He had an MRI this afternoon and the GI doctor noticed what could be an abcess on his Liver. He notice a pretty significant “growth” there – and he said there is no way it could be tumor because it wouldn’t have grown that big in a month, so he was pretty sure it was an abcess and was going to have a CT scan and have the radiologist attempt to drain it.
So – more twists in turns in the road. I’m a bit concerned because this will once again delay chemotherapy, and he really needs to get on a consistent path for that to keep things under control.
I’m off to investigate liver abcess on the board. (this board is still such an amazing source of information)!
Tom
Yes his fever is gone which is good news. Just waiting for the antibiotics tondo their work! And you are right Lainy…I think Ben just does it for the attention!
Marion, all IV administered antibiotics right now. He’s on two: 1) Zosin every 6 hours and 2) vancomycin.
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