The Love...

We were so lucky to know him...
To love him was an honor..
Seeing his smile was inspiring..
May you rest in peace my love, you will forever be missed.
Thank you for everything. You touched many lives.

The University Daily Kansan
Lawrence Journal-World
Morning Sun
The Kansas City Star
The Ottawa Herald

There will also be obituaries in additional papers that should run this weekend, but are not online yet. They are The Daily Union and the Columbia Daily Tribune.

Take care everyone.

-Abby

The Plans

The funeral will be at Warren-McElwain funeral home. The viewing will be from 6 to 8 pm this Sunday and and the funeral will be at 1:30pm Monday. Thanks for all that followed.... I will hopefully put a link to his obituary when it runs.

Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf,
So Eden sank to grief,
So dawn goes down to day
Nothing gold can stay.

This was the poem Jeff wanted everyone to know. He was gold and couldn't stay... I miss you Jeff, but I am so happy for your peace!!

-Abby

So Sad

Jeff passed away this evening. I will meet with the funeral home tomorrow and will post as arrangements are made.

-Abby

More changes

We met with Dr. Tim Monday night. Jeff is not taking in nearly enough calories at home to even maintain his weight. Jeff decided Tuesday morning that he was okay with being admitted into the hospital again for IV nutrients. Jeff wants to go to Stormont-Vail in Topeka this time. Dr. Tim has to find a hospitalist to take Jeff's case on for admissions. If he has trouble finding a hospitalist Jeff wants to find some way to get into the hospital for nutrition.
Jeff's physical being has declined somewhat. He is coherent in the fact that he will look at you when you are talking and respond on occasion, but he is sleeping most of the time. He looks extremely thin. We put some oxygen on him last for a little while.
Some things will be different in the hospital this time in hopes that his pain will not be as bad as last time. A catheter will be put in from the start and he will be mostly sedated during his stay. We are expecting to be in the hospital for about a month.
The end goal of getting Jeff's nutrition better is to get him in a place where he can have surgery (if a surgeon will do it), participate in the trial at home or both. If we go into the hospital and Jeff's pain becomes out of control like last time and there is no relief then we might come home early.
I think that is all for now. Everyone take care and keep all the positive thought coming.

-Abby

Met with Dietitian

Friday morning we met with a dietitian. We are trying to introduce some solid food back into Jeff's diet, but he is sleeping an awful lot, which is making it a challenge. Sometimes his taste or appetite has shifted in the amount of time it took to prepare something. We should be meeting with Dr. Tim later on this week. He got the okay and regiment information from Dr. Stephen Cantrell in Tennessee. This is a trial regiment that is seeing some results in tumor shrinkage and along with that is subsiding some of the negative effects from cancer. It is a regiment that Jeff can receive at home and does not require him to travel at this pint for any observation. Dr. Tim will go over all the information with us and see if Jeff wants or is able to do it.
Jeff is still extremely weak and while he has put a few solids on his tummy and has held them down it is not much. He is awake for maybe 5-6 hours out of the day. I still worry about him and we are not out of the woods and have a long way to go. That is the update for now.
Take care! I hope all is well with everyone!

-Abby

Miracles are on the Horizon

Jeff started having bowel movements Friday night. This is huge because it means that we can work him back up to eating again. The thought is that he most likely had an ileus and it just corrected itself. Jeff and I removed his bowel spasm medicine Thursday night and we think that might have had something to do with it.
Dr. Tim wants to get a dietitian in here so someone can guide us on how much Jeff needs to be taking in to get his strength back. Right now he is still mostly sticking to liquids like Ensure. He is tired a lot, but I think that is because he needs some nutrients for energy.
He is still vomiting on occasion, but not like he was before. I truly believe all the prayers, chants and positive energy are what is slowly going to bring Jeff back to us. So, everyone keep doing what your doing. Hope all is well with everyone. Take care.

-Abby

We are back home

We came home Friday afternoon. They ran some blood work on Jeff on Wednesday before he was scheduled to have surgery and his sodium was 118, but they like it to be in the 130s. He was admitted to the hospital and was given IV fluids with sodium. Thursday his number was 124, but his pain was creeping up and they were giving shots of Fentanyl in the IV for the break thru pain, but it never seemed to get on top of it. They eventually switched to a PCA pain pump, but that did not seem to make a difference. They started to give him nutrients thru an IV Thursday evening to increase his nutrition. More blood was drawn Friday morning, but his sodium had only climbed up to 128.
Dr Hamilton and come in to visit with us and said he had looked at the actual scans with the radiologist and the metastisis was more than what they originally thought. There were some spots found up by his liver, but there didn't seem to be any inside the liver. The surgeon said that he could still help with the bowel blockage, but didn't think that he would do anything that would help with Jeff's pain. He had come to the new conclusion that removing the right kidney was not something that would help Jeff's pain and felt very much that the tumors in the pelvic region was causing Jeff's pain. Dr. Hamilton wanted us to be aware that we might just be prolonging Jeff's pain.
I am not for sure how much of this information Jeff knows as his pain was so severe that I don't think he was able to hear too much.
Jeff decided Friday afternoon that he couldn't handle the pain any longer and needed to come home. Since we have been home we still have been battling his pain and he is now taking liquid Oxy again for breakthrough pain. Although he did not vomit during his hospital stay he began vomiting again once he got home. He had lots of visitors for his birthday, so today he is mostly resting plus we had a long night of vomiting and pain. When Jeff is able to I will make sure that he knows what the doctor said in the hospital and then he can decide what he would like to do. Jeff might want to try surgery again, but I am not for sure.
Thanks for all the prayers, gifts and positive energy for Jeff. Hope all is well with everyone and take care.

-Abby

Surgery is Scheduled

We got the go ahead for surgery this evening. We will check into St. Francis tomorrow morning. He will receive IV fluids for the day and is an add on to the end of the surgery schedule. We are thinking surgery will be about 4 or 5 pm.
The test Jeff had done earlier today did not show much. The contrast only got approximately 1/2 way down the small intestines. They think Jeff might have an ileus. Since the contrast did not make it that far down then this is just speculation and they won't know until they get into surgery.
We do know tomorrow that they are removing the mesh and Jeff will have a colostomy. We will talk tomorrow with Dr. Hamilton about the removal of the right kidney and any additional tumor removal. Jeff's birthday is the 17th. He will be 32 and will have made it 4 years (in age-diagnosed at 28) since diagnosis. Poor guy will most likely be in the hospital still. Take care everyone!! I am not for sure what the internet access will be like at the hospital, so it maybe a little while before another update.
Hope all is well with everyone!!!


-Abby