My husband Jack is having stents put in today

Hi Bluebird, I am sorry about the RE cancellation but the stents are a necessary thing to alleviate the Jaundice.  Usually the Billie starts dropping once stented as the ducts will now be open for the bile to flow. I hope the RE can be done soon and these set backs are what we refer to as our roller coaster ride. Sending good vibes your way and BE STRONG!  Please let us know how Jack is doing with the stents.

Hi bluebird,

I hope Jack's stents help with his bilirubin and he is able to have his radioembolization soon. All the best to both of you. Please let us know how he is doing.

-Pam

Hello All,

The stent that was put in last Thursday is not working.  His bilirubin went from 8 to 10.  I just talked to the interventional radiologist who said the only thing he can offer is to try to decompress the left lobe from outside (surgicially with the bag for outside drainage), but he doesn't think it will reduce his bilirubin below the 2.0 limit for further treatment options (radio embololization, chemo trial).  Jack's right lobe is completely filled with tumor, so they can't do anything for that side.  He wanted us to consider whether to have this procedure done, in light of everything.  He was not optimistic.  He told us to call him back later today with our decision.  Personally, I want to go forward with it, because we have no other option.  My husband is sleeping, so I will talk to him when he wakes up, and also talk to the chief oncologist.  Jack has been groggy and not lucid since the stent was put in (he was getting forgetful the last two weeks), and he is so yellow from the jaundice.  The doctor talked to us last week about hospice care.  Should I be bringing them in now?  I don't know too much about it.  I have been taking care of him and have family staying with us now to help out.

Bluebird, I ditto what Marion said. I have talked to many on this site who did not want to call Hospice and after they did, they knew they did the right thing. Comfort is the bottom line. IF Jack decides he wants Hospice now, your ONC will set it up. They will come interview you and the next day you will have all you request. Should you decide to go that route please feel free to email me and I will tell you what I ordered for Teddy and why. You will be less afraid knowing they are visiting and doing what is necessary to keep Jack comfortable.  I know very well what you are going through and my heart is with you and your family.

Thank you all so much.  We talked with the oncologist yesterday and are going to give it one last shot with the drainage procedure tomorrow.  If that doesn't work, he will sign off on the hospice and get that started.  He said to go ahead and call them to set up a first meeting, so we will be ready to go when the time comes.  I have heard great things about hospice.  Lainy, I will e-mail you then for your suggestions.  Thank you so much.  I think the hardest thing is preparing our ten year old son for this.