So the one day trip to Duke last Friday turned into a four night stay in the hospital. Managing Jack's sodium levels took a bit more than expected to get him back up to normal levels. Plus they were working on managing his pain with this large tumor in his abdomen, which in turn caused other complications as all pain meds will do in time - especially when you aren't eating much. This led to another night stay to try and get Jack some relief from constipation. Jack never had this issue before, so this was all new territory in nausea and discomfort. However by Tuesday morning we were a go! Or should I say he was a go on Monday night - so we could go on Tuesday!
Sarah and the girls came down on Friday, cutting their vacation in the mountains short and Sean came up from Charlotte leaving Paige to manage the kids. On Saturday Evan (Sarah's husband flew in and took the girls home with him on Sunday) Paige and kids headed to their vacation at the beach with Sean staying with us in Durham for what we thought was one more night. On Monday Sarah flew home thinking Jack was getting discharged and wanting to help Evan with the girls when they reached home. Sean left with us on Tuesday, as we headed west to the mountains, he headed east to the beach to be with paige and the kids at the beach where they had planned their family vacation.
Once we arrived home in Todd, Jack was very weak and it was a struggle to climb the 24 steps to our bedroom - but you could see the relief he felt at being there. And Cody was nearly beside himself with joy at seeing us (especially Jack) Cody is our dog that loves Jack so much he won't leave his side except to eat and go outside. Sarah at times had to pick him up and take him outside, because he wants to stay with Jack. To say they have a special bond is understating their love for each other. Cody just could not stop doing circles when we came home - his way of jumping for joy!
Today, which is only Wednesday, (but seems like it should be a week ago we left Duke) Jack woke up to the pressure of the fluid build up once again making it hard to breathe or eat. So today we went to the Watauga Emergency Room for another drain.
After being there for hours - and having nothing to eat - I think I was turning into Betty White or a Dementor. There was nothing I wanted in the "healthy choices" vending machine and wouldn't you know - I cleaned my car out of all the good stuff we had at the hospital in Duke. Plus nothing but soda to drink for me and they didn't want to give Jack water for some reason... I had a hot powerade in the car - but could not find ice anywhere!
After finally draining Jack (about 5-6 hours later) we found out that they drained 3900ml (that's 100ml shy of 4 liters!) and they wanted to check it because he has elevated white count levels. I called Elise to run by a burger on her way home from work - but Jack had talked them into giving both of us dinners. Finally they let us go - so we could go home.
I am far from the story teller Jack is, but will work on it. Jack and I thank you for all your prayers and positive thoughts. We just need more time for the anti-PD1 to be able to work. 9 days until his next infusion. And if he can hold on a couple more months...
Peace, love, hope and time for the cure
Helen
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
― Lao Tzu
Various Pictures:
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| Yum - fried fish dinner at Duke. Yes Subway from the cafe was better! |
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| At Duke on Oncology ward is on the 9th floor - same as the air care pads |
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| The girls stuffed animals at the hotel in Durham looked pretty cozy! |
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| Jack's hair is growing in kinda weird... he has a strange spot where the hair is darker |
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| Jack and Sean when he got discharged and we were actually leaving the hospital |
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| Jack's brother Rick posted this picture of Jack as a kid posing for an artist |
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| Napping before paracentesis procedure today |
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| Notice the 'healthy choices" in the vending machines :) Now a few from my birthday party. |
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