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Sara is healing and looks/feels more like herself. She has some fluid pockets in her abdomen that might still be infected the docs are watching, but they are confident enough they have whipped the bugs that they have taken her off IV antibiotics to see if they try to come back. She’ll need to watch that for two months. If there are no flare ups, then she’ll get the green light to do her round of clean up chemo.
Thank you to all who have helped so very much in the past year of this battle (Sept 8 marks the 12th month since diagnosis). We are actually far from out of the woods and are using this more peaceful time to prepare for what is coming down the road in the coming months. Love you all.
This from Hoyt Burrass: Even though our efforts have helped Dean and Sara through these difficult times they are not out of the woods yet...if you can donate again please do so...Sara still has a long road to recovery.
Sara was transferred from Barnes Jewish Hospital in St. Louis to Kindred Hospital in Peoria. Kindred is a LTAC (Long Term Acute Care) facility which is better suited for someone needing attention well above home care and even a regular nursing home. She is still battling infections throughout her abdomen (and has two drains dedicated to abscesses) as well as chylous ascites (which has its own drain). The ascites was diagnosed and conservative protocols instituted 3 1/2 weeks ago (limited real food, 100% TPN to make up the difference), unfortunately, the chyle leak involved is being stubbornt and not reducing as expected. This is an extremely rare complication from the work done in a Whipple procedure (namely the skeletonization of the Superior Mesenteric Artery and reconstruction of the Superior Mesenteric Vein must have damaged the cisterns chyli (essentially a key containment sac for the chyle solution I never heard of a month ago). One paper I read claimed that of the 5377 Whipple procedures done at a major university medical center, only 13 developed Chylous Ascites (that’s 2/10s of 1% if my grade school math holds up).
Also in the surgical process, some bacilli from the intestinal track (normal bugs we all have) escaped into her abdomen to add infection to the list of things going on in there.
She’s fighting as hard as she can, but is extremely fatigued and has lost an enormous amount of body mass. Her pain is constant but includes numerous spikes during the day.
Plan is to continue her antibiotic course and the conservative approach to the chyle leakage with a recheck by the surgeon and infectious disease people on July 10th.
Sara had her first major complication and is back in the hospital in St Louis. Something called chylous ascites which in her case means the return plumbing in the lymph system running stuff back to the liver carrying lipids was damaged in the surgery allowing the stuff, chyle, to build up in her abdomen. This complication is exceedingly rare, but usually not that dangerous.
Care normally involves reduced diet, IV TPN, and time. That works 67% of the time. If that fails a stent could be installed. Major repair surgery does more harm than good, so that is very unlikely.
This is, however, taxing our caregiver team to the hilt, as she is very weak and fatigued, so there are a multitude of little tasks that she needs done that the nursing staff cannot be asked to deal with, so one of us tries to be there as much as we can.
Unfortunately, with her 3+ hours away, this is awkward and expensive, even with the kind help of so many in the St Louis area.
Surgery went well Tuesday, they were able to do the full Whipple and removed the entirety of the tumor.
The procedure was more complex than expected.
Vascular reconstruction on the Superior Mesenteric Vein was done, but no ‘replacement’ vein was needed from her leg or whatever… they were able to merely cut out a section and rejoin the ends.
Not one, but two, Colic Arteries were involved. Both were cut and tied. This resulted in the cutting off of the blood supply to the Transverse Colon, which itself was removed and the Ascending and Descending Colons joined together without the middle-man.
The surgeon described the tumor as ‘pulling together' the local veins and arteries using the membrane that holds the local organs in place.
Finally, there was the unexpected involvement of the Celiac Artery Trunk. The tumor was removed from it via what he described as ‘scraping’ leaving, IIRC, a skeleton (?) behind. This disturbed the nerves running along it which control digestion.
The combination of the scraped Celiac Artery and the missing section of colon means that long term recovery will take up to a year and both combine to mean that they will have to hold off on restarting chemo longer than normal as well as more problems with digestive issues.
They had her walk a little, and is currently sitting in a chair (though heavily drugged and dozing). She looks amazingly good for what she and her innards have been through.
Well, after three months of chemo we went for Sara's second surgical consult on Jan 11th. The tumor has shrunk quite a bit, but the 'fingers' of the thing still involve a major vein to a degree and location that still precluded resection. It's still within reach, though, and she has begun a second round of three months of chemo just now. She's fighting with the spirit we all know her for. The protocol the hospital uses for this allows for 6 months of chemo, tops, then they must re-evaluate the plan. We are all pulling for her to get the thumbs up when this 3 month spell is done.
So, this is the first time I've stopped by. I was a little stunned when I heard y'all were doing this but it's a perfect example of what I love about humans. When it comes down to it, we're basically good and kind. I'm one of those stubborn types that thinks we should take care of ourselves but the truth is, this is going to be expensive and the help will ease my concerns so I can focus on getting rid of the little free-loader I've got hanging around! Now to the mushy part. I cannot tell you thank you enough. It's just not possible because my heart would burst in the effort and well, that would be counterproductive, eh? But I can tell you that many times each week and sometimes each day, I feel the thoughts, prayers, meditations and love that y'all are sending me. It is as if I'm surrounded by a mass of cotton that gently cushions me and carries me away from the hurt and fear. I can't say thank you enough for that either but I wish I could. I love you all and we will beat this thing! Sara
Thank you so very much everyone. The outpouring of support from so many friends has been humbling. We are getting braced from the unfolding storm. In answer to the questions: Yes, you can make a deposit directly into the bank in Homer, just tell Judy Lowe that you wan to make a deposit. For those wanting to go direct via PayPal, just make it to the address d.essig @ comcast.net
Dean (and Sarah)---I was so distressed to hear this news. I really don't know what to say---words fail in these situations. You guys fight this as best you can, and know there are a lot of us worthless counter-pushers out here cheering you both on. If you need anything, send me an email.
Best wishes, Sara and Dean. Hope the surgeon rolls three sixes on the surprise roll!
I'm an optimist. I'll be praying for the 2nd round to make this operable.
Fingers crossed everyone... Sara finished the 3 months of neoadjuvant Chemotherapy. She had her follow-up PET scan today (no results in yet) and is looking at going to the surgeon for a consult in January to determine if she is now resectable.
I saw this post on Games Plus website in Mount Prospect. I grew up in Homer, IL. My parents are Jerry and Cheryl Eagles, who moved to Thomasboro about 10 years ago. I never knew there were game designers in our little town! My mother lost a battle to CHF /Scleroderma last year and I wish you courage and hope. My opinion is that times of struggle are an opportunity to renew friendships, bond together, and recommit to making every moment count.
Wishing you and Sara all the best, Dean. You are both in our thoughts every day.
Well done, kind of restores your faith a little in humanity :)
I came here to donate, but discovered that without a creditcard I can´t. I really would have liked to give you and your family something back for all the joy your games allowed me to feel over the past years. If there is a way to donate by PayPal please let me now. I wish both of you strengh, hope and confidence in this time! I pray for you. Christian, from Germany
Dean: There's nothing I can say that will help aside from saying you and Sara will be in my thoughts every day, that my best wishes are with you. We gamers owe you so much for your contributions to our hobby. Looking at how fast the donations are coming in, I can't help but think maybe it's a sign that things are going to improve. Hang in there.
Can I just go to the bank and make a deposit?
This beautiful couple have been so kind to me, a complete stranger. They gave me support in a time when I really needed it even though I had nothing to give in return and their kindness truly touched me. I so wish I could return it, all the way across the ocean. My love to you both ♥
Dean, Thoughts and prayers for the both of you. I'll contribute something in the next month or so.