As many of you have already heard, our sweet mother and wife passed away last night after fighting one of the bravest battles.  She went quickly and peacefully and we are grateful that she is no longer in pain.  We had a great weekend together as a family before she left us and I am sure that she is having wonderful visits with her dad and our grandma and grandpa bailey.  We are all doing well and are together making arrangements.  Her funeral with by Monday, May 7th at 11am at the north chapel  in Monticello.  There will be viewing Sunday the 6th from 6-8pm at the north chapel and Monday from 9-10:30.  In lieu of flowers we ask that donations be made to the Victims of Mill Tailings Exposure which is a cause that she believed in worked for that helps citizens of Monticello with Cancer Screenings and help with cancer treatments.  Donations can be sent to VMTE PO Box 127 Monticello, Utah 84535.

Information regarding the funeral can be found at www.sanjuanmortuary.com

Thank you for all your kind words, cards, and emails throughout our fight.

Wednesday, April 25, 2011

Jenna and I are waiting for breakfast at Primary Children's Hospital. Jenna had her surgery on her ear yesterday afternoon and came out it like a fighter that she is. She is an amazing young lady trying to be so tough and wanting to do everything right. She had one of the last surgery times yesterday, they went in about 2:30 and it was about 7 7 PM before she came out of recovery. She worked hard on doing the liquid diet and then when she was really hungry (take in account that she went off food on Monday at 8 PM) the food service place her was closed, so we are patiently waiting for breakfast to open up and get some food in this angel. We are hoping that her hearing aid is in and we can get it today while we are in the valley. Dr. Muntz felt good about the surgery, except that his personal goal was to correct everything so that she would have normal hearing without the need of a hearing aid. We most likely won't get that level in her left ear but with a hearing aid she should be able to have average hearing. She needs to be back to see Dr. Muntz next week to remove all of the packing in her ear, then in four or five weeks for a followup and then in August or September we will be back to the right ear for some work and then six or seven months from today, he will need to go back into the left ear to do some additional work. She has made friends with most people and just absolutely loves Dr. Muntz. She didn't even cry or jump yesterday when they inserted her IV. That is a first so we have seen someone watching over her. Marilee has been doing OK. Drinking liquids at a much better level than in the past month. Food is still an issue. She doesn't throw it back up anymore but nothing really sounds good for her to want to eat. Monday evening she made a determined order that she was going upstairs to see everyone and have some dinner. I said are you sure??????? Yes was the answer so we did get her up the stairs and she had a few bites of food that the neighbors had brought in. She rested for a bit and then went back down stairs to the bed. Kelli said that she slept very good that night, more than likely from exhaustion. She had a so-so day yesterday. She has a doctor's appointment on Thursday with her lung doctor and then if everyone is up to, we will make the trip to Monticello. Kelli will travel with me and Pete will come and get her Sunday. Josh and Heidi are coming over on Friday to also assist and help get her settled in and make some plans for her care at the house. I know that some are wondering about coming to visit and we will try to accommodate those the best that we can, depending on her day and other considerations. She is looking forward to getting home and seeing the good people that have been praying and pleading for her. We are going to need some assistance by having having some people come in and stay with her for a few hours during the day as I need to get back to work or need to travel. Right now, Marilee needs help getting up from her bed and back into her bed, assistance in getting to the bathroom, encouraging her to eat and drink and just watching over her. If you might be interested in this, please get a message to us. We are so grateful for all of you and what you do for us. She is still determined, fighting, and being a very compassionate and caring patient and being of good spirits. Thanks to each of you for your caring, your thoughts, your prayers, cards, emails, and everything else.

Wednesday Morning

As many of know, Marilee has been experiencing significant medical issue along with treatments.  We met with her as a family last night and have decided  that the best course of action for her to to discontinue any future treatments and allow the Lord to determine how long see will stay with us.  She is very much aware of her situation and desires to be be released from her pain.  She has indicated that she is at peace as is her family with this decision and would pray that she be released quickly and quietly from this ugly disease.  We will keep her at Kelli's for the next week as need to follow up with a doctor next week and we have Jennna's surgery scheduled for next Tuesday and then we will bring her hom.  At the appropiate time, we will seek some hospice services for her.   We ae grateful for your prayers and thoughts and would ask that you conintue to pray for Marilee and her children, especailly Jenna with her upcoming surgery.   We love you alll and are grateful for what you have and will do for us.   God bless you all.

Friday Night's Update

Marilee is still in the Huntsman Cancer Center tonight and most likely will be here until Saturday or Sunday.  She has had some procedures done to relieve the pressure of the fluid in her lungs as both lungs have fluid around them.   She was in intense pain yesterday after the procedures were done but the medical staff has worked very hard to get on top of the pain.  She has rested most of the day and been able to sleep for the most part of it.  Kelli and Heidi have both been here assisting and caring for their mother.  We are hoping that she will be released from the hospital by Sunday and then we are planning to have an appointment with Dr. Ward sometime the first of the week.  Thanks for all of your prayers and thoughts.

Huntsman 4513

Yes it is real, we are back at Huntsman in the first room at 4513 with the glass door. Marilee was uncomfortable last night with her breathing and I wasn't able to get her oxygen saturation up and so we went to the San Juan ER and we went and she has fluid on the other side and so we headed off to the Huntsman this time in the car and awaiting a bunch of test tonight and tomorrow.

Saturday Morning in Monticello

Marilee returned home from  up north on Friday.  She handled the trip pretty well and is glad that she is home.  A world wind week of staying in Monticello, the to Huntsman, then to Kelli's and then back home so she is still trying to figure out where she is sometimes.  She had liquid in her right lung that caused her significant pain and difficulty in breathing.  They took nearly three liters of fluid from her lung the first night at the University of Utah ER before she went to the Huntsman Center.  They put in a niffty little drain into the lung area that we can drain at home every other day.  The amount of fluid is getting smaller each time we do the drain .  That is good.  Dr. Ward wanted to re-evaluate treatment plan and schedule in the upcoming week so we are on  holding pattern until then,  but it will good for her to get some rest.  We very much appreciate the many offers to assist and help in anyway and don't be suprised if we take up for some help.  Heidi and Josh are her for the weekend and a few days.  I so very much appreciate and love my children for all that they have done to assist and help with their mother.  Each has done things in their own way that has made this situation tolerable.  Thanks  Kelli, Pete, Max and Jillian; Heidi and Josh, Alisa, Ryan and Jenna. 

Wednesday

Marilee is being released today sometime this afternoon.  We will drop two floors to go her previously scheduled medical appointment with Dr. Ward and see what the game plan will be.  She has been up and walking around today and has been drinking and eating, well pretty good.  Breathing is in good shape and she has a lung drain that will allow us to keep on top of the fluid around her lungs.  We won't know much about what the future plan will be until after we meet with Dr. Ward but are hopeful to be able to get her home sometime in the very near future.  Thanks to everyone for your concern, prayers, tender mercies that are all around us everyday.  She is indeed in the Lord's care and hands. 

Tuesday

Here is just a quick update. Marilee is still in the hospital but doing really well. Yesterday they inserted a lung catheder that will keep her lung nice a fluid free. It can be drained at home and is actually really cool. Every time something crazy has happened in this adventure it always makes me grateful for inspired minds that come up with crazy things like chemo therapy and lung catheters. She is feeling good and eating well. She has seen the physical therapist today and they will be giving her some blood and hope for her to be discharged tomorrow and then she will see dr. Ward in his clinic tomorrow afternoon that's assuming everything goes to plan. We are sooooooo grateful for all the love and prayers and for the care from the staff San Juan Hospital and a special thanks to Matt Briggs. She Can't wait to get back to Monticello so I am sure you will see her soon. Thanks again.

Huntsman Sunday Update

Marilee is back at the Huntsman Cancer Center and having some fluid around her lung. They flew her up from Monticello Friday night to the University of Utah where removed the liquid and then transferred her over to the Huntsman Center. She is resting much better and is able to breath much better. The lung doctors are going to come over to the room tonight to do a consult and then we will have a better idea of what the plan will be. We hope that she is able to make a good recovery and can return back to her home sometime in the near future. We love and appreciate all of your prayers, thoughts, concerns, etc.

And A Quicker Flight Back

Maybe I should have waited on updating the blog, however, Marilee had some complications during her very quick visit to home and after a visit to the ER at the San Juan Hospital we made the flight aboard a King Air Airplane back to Salt Lake with a stop at the ER and the University of Utah and then over to the fourth floor of the Huntsman Center. While we don't know a lot of the issues and problems tonight or this morning, they were able to give her some much needed relief and she has a calmness and peace with her as she starts regaining her strength and health. She is one tough cookie as Kelli and Merrill can attest and has been enduring some pain and problems for a while that we were not aware of. It is nice to see her able to rest and look comfortable. Much more for a later time. Thank you all for your assistance while she was home in Monticello, we hope to be able to return soon and we are sorry that she wasn't able to get to see all of those that wanted to see her and that she wanted to see. We appreciate the staff at the Hospital in Monticello, the men on the ambulance crew, and their close coordination with the folks at the Huntsman Center to provide Marilee the important and needed medical care that she needed. We do live in a very great place.

A return home

I am aware that it has been sometime since there has been an undated to Marilee's blogspot. Many get worried when there isn't anything on it for a while that things are not going well but we have been making some preparations to see if we couldn't get her home for a visit. She left her office on September 28, 2011 to her medical appointment and has not back home since. She was not able to get her chemo treatment last week but after looking at her blood work this past Monday, they told her see could make the trip. It was a long and basically a non-stop trip from Layton to Monticello, it was a tough ride towards the end. We made a small stop in Price at the Health Department and at Moab to allow Marilee to say hello to her fellow workers. It was a very good experience. We made a quick stop at the clinic in Monticello to see Dr. Black and she has been on the recovery from the trip since then. She is glad to be home and Jenna has a continual smile on her face. I think she was beginning to wonder if her mom was ever going to come back home. Ryan has moved back to Monticello and has a job that will start in the next week or two. He is out playing basketball with the old men in the gym tonight. We appreciate the tender care that Kelli and her family have given to Marilee over the last six months and we know we will be back to see them at least for an overnight visit or two. Everyone asks how she is doing. She is doing pretty well. She is weak, skinny, tough as nails, wanting to get better and doing the things that her Medical Staff have asked her to do, at least most of the time. She is really not having visits at this time as she is getting ready for hopefully a return trip to Salt Lake next week for a chemo treatment. That would be her number seven for treatments and we hope to get a better grasp of what lies in front of her as far as further treatments, how often, and a lot of other questions. We have been able to make a seamless transfer of services as she has the same company providing her home health care, Rocky Mountain as she did in Layton. Instead of Katie it is Matt but the same great care. She has the same oxygen company so they just deliver where we tell them that she is at and we have seen Dr. Porter in Layton and will see Dr. Black in Monticello. Skipbo, our dog has wondered what has been going on for months and to see someone here for days and to see Marilee has made him a pretty happy dog. He guards her pretty well. We are grateful for what we has been through for the experiences. We are still hoping and praying for a miracle recovery but will also settle for a longer term recovery also. We appreciate the many who continue to offer prayers, give great thoughts and encouragement, and provide care and service to all of us. I will continue to make updates as to her progress and hope we get to the point that she can get out in the public and see everyone.

Tuesday Report 3/13/2011

Marilee had her blood drawn for tests yesterday and her blood and platelets are both low.  The plan is that they will retake the blood draw on Wednesday am and if they are still low she will got down to Huntsman and get her blood drawn again so they can start the match and whatever else they do.  Rather than waiting around the Huntsman Center for hours, she will go back the next day after staying at a hotel near the Center to get the blood.  Again a day at a time.  Pete is getting ready to run the race in Moab this week and we are all betting that he will blow out the competition.  Today is my 27th year working at the county.   It is amazing how fast time does fly.  A few cheers from Pat Christensen, Susan Taylor, Bill Boyle and some others that I will have forgotten.  Please keep Marilee in your prayers and thoughts.  We are all love her.  Good morning honey.

Sunday Update

Marilee has had a pretty good week and is feeling pretty well for the most part.  She has been eating some as she had a hamburger from Five Guys, a sandwich from Subway and bread pudding from Famous Daves.  Alisa was up for a visit yesterday and she got Marilee to walk to the corner and back and to sit on the porch and enjoy the sunshine.  Kelli, Pete and family have been busy with Pete's grandfather Yarn's viewing, family and other activities associated with all of the family together.  Elder Holland was a speaker.  He had been a student under Grandfather Yarn when he teaching at the Y and later was on the faculty together and then he read a letter from the First Presidency.  Brad Wilcox and Grandfather Yarn were home teaching companions and so Brad also talked.  An event that you would also most pay admission to attend.

Ryan got to play in some church basketball in Salt Lake during the week.  He was able to play as he was concerned an investigator.  They lost a close battle yesterday after he fouled out.  Who would have thought that Ryan would foul out of a church b-ball game.  Ryan will be moving back to Monticello within a few or so as he is going to take the EMT class.  He had hoped that he would be re-hired on the Forest Service Wildland Fire Crew as he has worked two seasons for them but they have some new hiring quotas so it appears that he won't make the cut.  If anyone knows of anyone hired spring and summer help, if they could contact Ryan at ryanbailey10@gmail.com or 435-459-0667.  It would be appreciated.

Thanks one and all for all of your help, thoughts, prayers, wishes, and everything else.  We love you for what you are do for all of us.

Wow it sounded like.......

Wow, it almost sounded like my Marilee. I had to make several calls to my wife today (don't tell my bosses) about different items and issues and it was like talking to Marilee of the time before the treatments started. She had strength, enthusiasm, laughed a bit, caring and tender (like the nurse in her), feeling like she could do a few things like be out on the front porch watching the grandkids and kids playing in the yard. It brought a few tears to an old man(as Ryan calls me these days)(actually it is better than Stone Cold Steve Austin or whoever). I will call it a tender mercy.

Chemo #6 Done

Marilee got her platelets up to about 120 and she got her sixth chemo treatment this week.   Ryan took her to the Huntsman  Center and she did very well and they had a good visit with Dr. Ward and staff.  He has scheduled another chemo treatment for Marilee on March 22, 2012 and maybe will get a scan in sometime.  They most likely will give her a few weeks off and she could make it back to Monticello for the first time since she went to SLC on the ambulance on October 5, 2011;  She has done very well so far and reported to me this evening that she has not thrown up since the treatment.  She is pretty tired and has some pain but it was good to get the treatment in.  Dr. Ward did indicate that more treatments would be in the future schedule. 

Marilee was able to call in at the last VMTC group meeting to share her experiences and feelings of actually being the one with cancer.  This is the group that has been working for funding for the mill tailing's victims and has been involved with the administration side of the program with her employment with the Public Health Department.

Meanwhile, Jenna made her visit back to see her ear doctor on Thursday and everything was looking pretty good but her hearing test showed diminishing hearing in the right ear that had the most recent surgery.  She was doing so well that she was schedule tentative to have surgery on her left ear on April 24 as they will go back and see how much they can reconstruct of her ear drum and the stuff inside it.  She will be getting some hearing aids in the near future to help out as she goes through everything.  If we can remain on schedule, she will have another surgery most likely in August or September on her other ear.

We send our condolences out to Pete and his family and especially Pete's mom and dad who have been so supportive of us during Marilee's treatment.  Pete's grandfather past away during the week and his funeral will be next weekend.  

We appreciate so much all of your concern and assistance.  One day at a time and we will be ready for what will be coming.

I guess an update is due. My platelets did not get to 100, but they are close enough that the Dr. said we could go ahead with the treatment for tomorrow. It's a love hate situation. This will be # 6. Then they want to do a scan and go from their with more treatments, I will get a break however and might even come home for a while. It will be pretty hard to leave this grand hotel. I am very spoiled.
Jenna has an appointment on Thursday to follow up on her ears. She will have to have surgery at least 2 more times. Ryan is still here in Layton. He has been a big help to run me to the Huntsman or help with the kids. We don't see Alisa much. She works in Salt Lake and comes up sometimes after work. Heidi and Josh are doing their thing in St. George. They are having a baby in August and that has probably already been posted, but I'm so excited I have to tell you all again.
Okay so tomorrow is the day. We appreciate sooooooooo much all of your love and prayers and cards. I am overwhelmed with all that you good people do for us. We love you all.
Marilee

2/24/2012 update

A quick update. As Marilee indicated her blood and platelets were up high enough to get a chemo treatment this week which would have been #6. They wanted her to get two units of blood so the trip down to Huntsman was made on Wednesday and even though they got the blood early to test, it was determined that she had another antibody in the blood and it would take up to two hours to get ready and then there would be only time for one unit on Wednesday and she would have to come back on Thursday to get the second unit. She decided to wait until Thursday and have both units so it was an all afternoon session but she was able to get them in hoping that it will boost her up so that she can get the chemo treatment next Wednesday. Dr. Ward was traveling this week so he was not at the appointment so he will be back on the next appointment. If she is able to take the chemo treatment on Wednesday, that will be the sixth of the original six scheduled treatments and we will then have to wait for a new schedule after most likely getting a scan. The markers continue to look good so there is good promise. She has been very tired today from all of the traveling and the treatment but she looks good and we are hoping that the transfusion will get her feeling good. Jenna is scheduled to go back to see her ear doctor next week to see how the surgery went and then to move on to whatever he feels that she needs. We have noticed that she had not been able to hear as well since the surgery but we know that there is still some packing in the ear drum that maybe hampering her hearing. We again, appreciate everyone's concerns, prayers, thoughts, calls, cards, letters. It is amazing to see how many good people are pulling for all of us.

See why I'm not the good one to write. I have Cancer brain and most of it is'nt working. Sorry for all of the type errors. Think of them as a puzzle to challenge you day.
Love Marilee

Every one is worried about the blog. On hour part every thing is okay and no will take up the challenge. Since I've had the least opportunity it's my turn.
I was scheduled for Wed for the infamous 6th treatment, but the platelets did'n get the energy boost pep talk I gave them last time and they didn't get up to par for chem. I am however going to keep that appointment and get 2 units of blood instead. Hopefully? the platelets will have gotten some savvy and grown in strength. It really is a funny emotion when this happens. On one hand you worry agouti the little buggers running inside you bode, but on the other had you don't have to face the side effects. I plan to take what comes and enjoy it.
Rick and Jenna have been up since Sat. Jenna i back into her Jumba habit and LOVES it. Rick has had phone conferences and a few meeting in SLC. Time passes and nothing much changes. My Mother is here to see the doctor again about her back. I wish she could get some relief.
We do have exciting news however. Heidi and Josh are having a baby. We,ve been sharing morning sickness stories,
Do here is the boring up date. We still can' t express adequately our love and appreciation to all those we love, Thanks for all you do. Our love and prayers are with you as well.
Marilee

Day 6

Day six from last chemo hasn't been too bad. I only threw up once today. Day Four was the bad one. Ended up at the instacare where Dr. Porter happened to be working and I got relief from nausea and pain. Had a good night and keep doing well. Rick is in Monticello. He said there is about 8 inches of snow down there. The dog got a haircut with help from our Moab shuttle friends. The kids have gone to a friends for family home evening. Everything else seems to be status quo. It is so nice to be able to hold my head up for a few hours. We have such good friends and families and caretakers. Thank you all. Especially for prayers cards and letters. We love you all. Marilee