Sunday

Good morning. Papa has Campbell at church, so I am catching up on stuff and reflecting on the week. Blake graduates this Friday and my wedding anniversary is Saturday. The funeral home downloaded some photos to a website if anyone would like to see the pix again. Have a tissue ready, I made it through about 12 photos.
videos.lifetributes.com/221722

Saturday May 28th

Thanks to all for helping me celebrate Jon and coming by the wake and funeral this week. I have enjoyed seeing everyone and listening to memories/stories about Jon. I am sooooooo glad that he is at peace now. It has definetely been a whirl wind, but the kids and I are doing well. I hope everyone has a great holiday weekend.

Sunday

Thanks for the great turn out today for the walk. With the rain down pour we still had a nice group. I have mentally counted about 110 people that I can remember participating today. I have a huge request for those coming to the wake and funeral. I would like you all to write some memory about Jon, write it out and bring it with you. I have a huge box to put all the papers in. It is very important that I save these for years to come for the kids. Thank you and see you soon.

Friday 11:30pm

Long day. This morning, Tom, Nickey and I went to make the funeral arrangements. My father then went with me this evening to pick out the flowers. For those of you wanting to help, we have the wake and funeral day stuff all covered, thanks for all the offers though. Looking forward to seeing everyone on Sunday. Jon will be looking down at all of us with a huge smile.

Sunday Walk!!!

I will be holding a bushel of blue mylar ballons and one elmo balloon too for Campbell. Please come and for the walk or just to stop by before hand. The walk begins at 9am. You can pre-register or register the day of the event.

www.getyourrearingear.com

Friday afternoon

Made all the arrangements today. The wake will be from 4-8 on May 23rd at St. Elisabeth Ann Seton Church in Hastings. The mass and christian burial will be on Tue 24th at 10:30am. There will be a viewing one hour before the service also. Burial to follow in Hastings.

St Elizabeth Ann Seton Catholic Church
2035 West 15th Street
Hastings, MN 55033
Phone: (651) 437-4254 Fax: (651) 438-2948

Friday

Just got up. Thank you for ALL the love and support. I am going to the funeral home this am to make arrangements. I feel at peace today that Jon is no longer suffering. Today I would like a quiet day at home.

Jon is at Peace

Jon passed away at home today at 10:30. He is at peace now. I will post details of arrangements soon. The wake will be Monday the 23rd in the evening and funeral Tuesday am. We will all be walking on Sunday. Come join me and celebrate Jon.

4am now

Jon struggling to get air. Just called for some oxygen to be delivered, praying it gives him some comfort. Tomm night I will be getting night help. I will be at the race Sunday. At this point Jon will not be coming, but I would still love all the support for him that day.

Thursday 3:30am

I am up with Jon. Something woke me up 2am, and I bounced out of bed to check on him. He is upstairs lying on the couch in the bonus room. Blake and I got him in a comfortable position there hours earlier. It is nice and peaceful for me to have this time alone with Jon. He doesn't respond when I talk to him, but believe he can hear me. I keep telling him that I love him and not to worry 'cause I am with him. All his energy goes into breathing. I hold his hand, lean on his shoulder and can hear and see how hard it is to breath. I look up at the pictures we have up, and thank God for bringing Jon into my life, and giving me 7 years of everything I have ever wanted. He has taught me so much about life and given me a child that he will live on in forever.

Wednesday

Jon is quite confused this am. I had a neighbor help me get him upstairs. He got a little upset when I wasn't dressing him like he wanted. I will be putting a plan together today on getting help at home. I know he wants to be at home.

Tuesday

Jon's homecare nurse came over and got his labs and changed his drsg over his PICC line today. His labs do not look good. His white count (indicates infection) is high, and all his liver function tests are elevated. At this point the doctor wants to continue with the current plan. Jon not saying much at all today. He dozes off as soon as he sits down. He will open his eyes and talk for a minute, then drifts off. Soooooo hard to see. His color doesn't look good and he is retaining fluid in his hands and arms now. He is rating his pain lower than it has been in months. The only thing that upsets him is when he is up and can not catch his breath. He needs someone with him at all times when awake so he stays safe. Thanks for all the kind words.

Monday Update

Today was a rough day. Jon was outside with a neighbor and took a fall. He was going up some outside steps into a house, lost his balance and fell backwards, and hit his head. It was not a hard hit, but he did get an abrasion on the top of his head and took some skin off his back along his spine. His balance is off a bit now, so he needs some stand by assist when up and about. It is soooooo hard for me to see him like this. Whenever I start to cry, he gives me a big hug and says with confidence "I am OK". Thank you everyone for your continual support as I go through this most difficult journey with Jon.

Walk on Sunday for Jon

For those of you needing information...The race/walk is at 9am on Sunday the 22nd at Southdale in Edina. You can register early that day,or online at www.getyourrearingear.com , the event is listed on the right side of the main web page. It is sponsered by the colon cancer coalition. Jon will be there sitting at the finish line.

Sunday 11:45pm

Jon continues to have issues breathing. He gets short of breath VERY easily. He continues to try and get out and about, slow he goes...but he goes. It is getting harder for me everyday to see him like this. He hasn't carried Campbell around for 3 months which is hard enough, now he doesn't have the energy to even play at times. Tonight she was asking him over and over, "Daddy you come downstairs and play with me"? He was sitting in the chair exhausted, he told her "Campbell, Daddy is too tired". She started crying and I tried to explain to her that "Daddy has owies and I would go play with her". She cried a bit and it broke my heart. For the first 24m of her life Jon never missed a beat,. He has been the best father a child could have. He has enjoyed every moment and has exposed her to more life experiences than some kids will have in a lifetime. He doesn't say much these days, but continues to enjoy life to the fullest. If it is nice out, he will be out on the front porch chairs taking in the fresh air. He tells me everyday, "I love you so much". That is all I need to get through the day. I can not put into words all the thoughts and feelings I have throughout the day, which have become more overwhelming. I try to focus on all the positives, and most of all that Jon is here. The colon cancer walk is this coming Sunday. If at all possible I hope that you will come by to support Jon. Even if you don't register, still come by, find us and say hi. We are hoping to push Jon during the walk. Your physical support that day would mean the world to me, 'cause it would mean the world to Jon to see how much he is cared for. Unfortunatly, the crowd isn't too overwhelming so it is easy to get in and out of the area.

Wednesday 1:30

Hope everyone is enjoying the humidity. Quick update. Jon doesn't really complain of pain much lately. The continual morphine rate seems to do the trick. It does take him more time to do things, but he is up and trying. He still is short of breath with activity. He has some nice "cankles", but doesn't complain. He is sooooo strong and is never going to give anything up.

Monday 11pm

Jon is resting on the couch. He sleeps propped up in a sitting position to help his breathing. I am now giving a majority of his meds thru his PEG tube inserted into his stomach. He now has his TED hose on also, to help the fluid retention in his lower legs.

Monday 1:30

Hope everyone had a great mother's day. I did the walk for a cure yesterday morning. I couldn't believe all the people. I wish I had a way to get that many people involved to support a cure for colon cancer. Jon did well yesterday. We went to another movie and he stayed awake the entire time. His breathing is still labored when he sleeps. He does still have some fluid retention evident in the am too. He is currently shaving, then we are going to take a trip to Target.

Saturday Update

On Friday morning when Jon woke up he was short of breathe. I was concerned, called home care and the pain clinic. He had an appt scheduled at 11:45 for his hepatic pump to be flushed at the oncology office. The oncologist went over to see Jon at this time. She was very concerned about his breathing. The nurse could not flush his pump, because he couldn't breathe well when lying flat. The oncologist wanted Jon to go to the ER for a chest x-ray to see what was gong on. His lungs on his left side were a concern to the MD too. Jon called me, I spoke with the nurse, but he was adimant the he was NOT going to go to the ER. Against everyone's advice he came home. The doctor did decrease the amount of fluid he gets overnight in half. The thought is that he is retaining fluid and it is effecting his lungs and breathing. As of today, he still is short of breathe with activity. His feet were slightly puffy today too. I celebrated mother's day with Campbell, my mom and grandmother today and he stayed home. It was so nice, Jon actually sat outside on the front porch for about 4hrs.

Thursday 11pm

Jon had a rough time last night. Wednesday during the day be did well. We went to the neighbors for dinner, he actually ate, and stayed out longer than usual. He was then up most of the night, sitting up in the chair. He was short of breath and said he felt like he could not breathe well. His pulse and resp were slightly up. I listened to his lungs, and discovered decreased breathe sounds throughout all left lung fields. He lies on his left a lot and believe he is getting somet fluid build up from his IV nutrition at night. Overnight he gets 1980cc of fluid. He wants to see how tonight goes. I am thinking we need to start cutting back on the volume of his nutrition. He is feeling full up to his throat and gets short of breathe easily throughout the day. Stay tuned.

May 22nd Walk

For those of you interested in coming to walk with Jon in support, we would greatly appreciate it. We do not have an official team set-up. Just a general registration is all you need.

Doctor's Visits Last Wednesday

Sorry for the late update. The GI MD discussed the possibility of a nerve block to some of his abdominal region, it was decided this probably wouldn't do much for Jon. It is used more in patients that have issues with pain from pancreatic cancer and have a lot of involvement with the nerve bundle close to the pancreas. We will continue to watch his liver function tests though, because sometimes the stent he had placed in February closes up. The pain MD visit was status quo. We are at the point where Jon needs to decide how much pain he wants to live with to be able to do what he wants throughout the day. She brought up the possibility of hospice, so he could have 24 hr availability of someone for pain control. He would not like to switch to this yet, he feels there is a good plan right now. A nurse also came in to assess the PEG tube in this stomach. He still uses this daily to empty his stomach if it is feeling full. The insertion site is a bit broken down, and I just needed another set of eyes to see it. Another infection is the last thing we need. She gave us some ointment and we are hoping it gets better.