Monday July 18th

For those of you that want to brave the heat with me and family.... Wednesday is Jon's birthday and his coworkers have put together a group going to the 12noon Twins game. At the 7th inning stretch we are going on the field and singing "Take me out to the ball game", in his memory. There are still tickets available. He will be watching from above.

July 4th

I hope everyone has had a great weekend. I would like to say thanks for all the invites to do stuff lately. The holiday weekend has been especially hard without Jon. Last night Campbell saw fireworks in New Prague, and I kept thinking about how excited Jon was to watch her reaction in the past. As Campbell always says, "Daddy is all better now, no more owies".

Monday June 20th

It has been 1 month, since Jon left us. I know that he is in a better place, but we miss him lots and it continues to be hard. The kids are doing well. Blake has been accepted into Normandale Community College, where he is going to get some pre-req's done. Campbell is 28m old and just a BUNDLE of ENERGY. She is up by 8am every morning, and asleep around 10pm. I continue to sort through odds and ends of stuff. I have a lot of anxiety at times, but it has gotten better since working through all the social security stuff. My good friend Heidi is flying in tonight to spend some time with me, which I am sooooo looking forward to. Thank you for all the cards, letters and phone calls to help me through this difficult time.

Sunday June 5th

Had a bittersweet weekend. Blake graduated Friday night. He was soooooo excited and Jon looked down from above proud as could be. Saturday I went up to St. Kate's in the am, it would have been our 7th wedding anniversary, and we always went up to the chapel there every year. I brought our wedding album and sat in the chapel for awhile. The rest of the day I hung out with Campbell. When I get upset and sad I try to remember all the great times and that he is in a better place now. The kids and I are doing fine, it has been busy, busy around the house.

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.

Get Your Rear in Gear

Sunday, May 22nd... MARK YOUR CALENDARS!!!!!! Please come and support Jon. The early registration deadline is April 30th. Go to the "get your rear in gear" website to register. Walking with him would be a wonderful surprise.

Tuesday 8am

Hope everyone had a great Easter weekend. Jon was pretty tired and rested a lot this weekend. He started a new med that has made him very tired. I am hoping to get something different with less side effects this week. This weekend we did go to another movie, "Water for Elephants". It was good, and he stayed awake the entire movie. Sunday we got up and had an egg hunt for the kids and then went to my relatives for brunch. Yesterday our wonderful friends and neighbors Mary Jo and Kevin did some spring cleaning yard work. Our yard looks awesome, thanks guys.

Wednesday 1:30

Jon woke up really tired today. He took his morning meds, played with Campbell a short while and went back to the couch to sleep. My mom and Papa Doc came over, so I escaped to due some errands. I am actually getting a relaxing pedicure at the moment. Jon does not see any doctors until next week. Homecare did come by to do his drsg change and collect his labs. His blood work continues to look good. His Alk Phos, which indicates liver function is now 387. It came down another 100 since last week. Normal is in the 100's.

Saturday

So we had an appt with the pain MD on Thursday. I wasn't sure what the plan of action would be. Jon had been soooooo tired and resting a lot at home. We had been out a couple times and when he sat down he would gaze off and literally fall asleep. He said he felt like he was drunk in a sense. The continual rate of his morphine was increased Tuesday, and since then it seemed to help th pain issue, but he was out of it. We needed to find a balance between pain and alertness. It was decided at the appt to decrease the morphine just a bit. Friday he was more alert, and even suggested going to see a movie. We went to an afternoon movie and he stayed awake the entire time!! It was nice to get out and know he was comfortable. His blood work continues to improve, which is also good news. Next week we have an appt to discuss a possible nerve block, which would block some nerves around his abdominal area.

Wednesday 8am

Homecare came by yesterday. We have an awesome nurse, Ken. He has been a great advocate for Jon. We got his morphine dosage increased. It takes a bit to see if it works. He is sleeping now and I am hoping for him to have a great day.

Monday 1am

Here I am again at 1am. I do not have a facebook page, but Jon does and I use it. I just discovered how to request similar friends, so I thought I would add a couple of my own :) . Someday I will create a page of my own, when I have some free time. Nightime is the only time it is completely quiet, so I can think and get important stuff done, or at least make a list. Today we walked around the MOA early in the day. Then Jon rested on the couch the remainder. He was having some horrible pains this evening. I am going to make sure the pain team is told tomm. I know there are other options we haven't tried yet to help him. It is horrible to see him suffer and put up with the pain, when we haven't tried other meds. He is such a trooper. In agony he walked the mall today. Even though I could see it in his face, he said he was fine.

Friday Evening 11:30

Up again, watching a Lifetime Movie. I am hoping Jon sleeps well tonight. He has not been sleeping well at night. Today he told me that the pain wasn't bothering him, but being tired was. He has been resting and napping during the day. Not long ago he was go, go, go and I was wanting to nap. Thank you for the continual support. We love the voicemails, text messages and mail.

Thursday 1am

Thought I would update, since I am awake. Jon went to see his oncologist yesterday. Everything checks out well with her. His labs continue to improve. On exam his liver is not enlarged. This was the 1st follow-up appt since he left the hospital. We did discuss the ongoing pain issue, which was deferred to the pain MD. Jon continues to deal with an increase in pain around his abdominal area. He keeps telling me if I ask him about it, "I will deal with the pain if it gives me another day to be here". He will never give up. Sometimes I have to stop and remind myself how sick he really is. I wish I could just switch places with him for a day, so he could have some relief. Our journey continues, one day at a time. Please remember to tell the ones you love how much they mean to you. You never know what tomm may bring. Life can be so much shorter than any of us realize.

Sunday

Jon had a rough weekend trying to get his pain under control at times. Saturday he was really hurting rating his pain 8-9 out of 10. Now he has a tremendously high pain tolerance, so I knew it has been bad. We are going to call the pain clinic tomm, and see what else can be done. We meet with his oncologist mid-week. Hopefully, he will sleep well tonight.

Thursday Update

Jon had 2 MD appt's this week. He saw the Infectious Disease MD on tues, where it was decided he could come off his IV antibiotics. He will be continuing on oral antibiotics for awhile, but at least we won't have to wake up a midnight anymore. His labs were drawn at home also that day, and his liver function tests are much better. His Alk Phos is half of what it was while he was hospitalized (it is now 597). Today we went to see the pain MD. Jon has had more pain issues again later in the day lately. He has pain in his abdominal region radiating to his back. The MD said he probably has some nerve involvement, that nerves run across your abdomen like a girdle. The MD increased his oral pain meds, which seems to be the only med that really seems to take some of the pain away. We are hoping to see this change work soon. It has been nice to get outside with Campbell the last couple days. She was soooooo excited to go to the park yesterday. She was running around climbing, going through tunnels and down the slides with a huge smile. It is always a joy to watch her experience things more independently.

Photos of the Disney Trip

Just a few photos to share. A special thanks to my wonderful brother Barney and our great friend Mary Jo, for helping us out with this magical adventure.

Sunday 3pm

Staying busy. We have been out and about this weekend. Jon hasn't had any pain issues. He actually looks more like his old self, his face is filling out. We have an appointment with the Infectious Disease MD on Tuesday and the Pain MD on Thursday. Hope everyone enjoyed the weekend.

Thursday 1030pm

Busy, busy week. I went into work for a staff mtg on tues to be up-to-date on what is happening with the move to the new hospital. It was great for me to see my work buddies. Wed I drove Jon up to Edina and he had lunch with his co-workers, and I looked around at the Galleria. Today he went with his dad and Campbell to storytime, went on a walk and took our weekly trip to Target. His pain seems to be controlled better the last day and a half. Nothing slows him down. It may take him a little longer, but he keeps the pace. It is hard being in the house soooo much with the cold weather. Spring can't come soon enough.

Monday 1pm

Jon is experiencing more pain. We are trying to keep on top of it. He tells me it is a 7-8 on a scale 1-10. This morning we stopped by his office to see his work buddies. He really misses them and it was nice for him to see them all. We are now home and he is resting. Homecare is stopping over tomm for the weekly visit.

Mark it on down- Sunday May 22nd

Just wanted u all to know the annual "Get Your Rear in Gear" walk for colon cancer is Sunday May 22nd. It would be great to see everyone and to support Jon. It is a 5k located at Southdale in Edina. You can register on-line or at the event. To register on-line go to www.getyourrearingear.com. Search under "events" tab and then click on Twin Cities on right side of screen. Will have more info about the day as it approaches. Last year the weather was awesome.

Thursday- No News is Good News

No news is good news. Jon has had a great week. We have been out and about early during the day and have enjoyed the warmer weather. Today all went well at his appt's. The issue of an increase in pain later in the day has been addressed. We are changing the dosing of his continuous morphine pump, which will hopefully help. Everyone in the office that saw him was amazed at how good he looked, since all they have heard is how sick he has been. Hope everyone had a nice St. Paddy's Day.

Typical Day @ The Holmes House

We are almost into a routine at home. Get up around 8am. I unhook Jon from his TPN, infuse his antibiotic, and get his 8am meds ready. Get Campbell going, fed and dressed. Clean some part of the house, run errands, eat lunch, play a bit, then Jon, Campbell and I take a 2hr nap. 4pm he gets another antibiotic dose and scheduled meds. Jon seems to have pain issues creep up around dinner time, so we stay close to home. He has his TPN hooked up at 8pm, and takes some more meds. I get Campbell down around 9pm. We set an alarm to wake us up @12midnight, and I infuse another antibiotic. All in all Jon is doing remarkably well. His pain is controlled for the most part, he is up and around feeling good in the am and early afternoon and starting to eat something here and there. His next doctor's appt is on Thursday with the pain team.

Weekend Update

Jon has had a great weekend. Yesterday we went to St.Paul and he got a nice haircut. We then took Campbell to see her great grandparents. Today we went over to Miss. Beth's for lunch, and then some friends stopped by the house to visit. He is slowly eating more by mouth. He seems to have a lot of energy early in the day.

Friday

Jon had a great morning. Went out to breakfast, and he had some of a pancake and over easy eggs. Afterwards we walked around the zoo. He hasn't had any pain issues today. Hope everyone enjoys the weekend.

Thursday

10,000+ hits in one month on the blog!!! Thanks for all the love, concern and support over the last month. Today Jon went with Campbell and I to her ECFE class. We then dropped her off at Miss Beth's so we could catch up on some things. Homecare came over, took some blood and changed his PICC line dressing. Jon has been experiencing some increased pain, so we are going to increase the amt of pain medicine going through his morphine pump. We picked up Campbell later this afternoon and took her to the MOA. We were there for a couple hours and came home. Jon needed to rest. We hope he has a restful night.

Wednesday Night

We landed in Minnesota later this afternoon. It took a bit longer than expected because we had to go around some bad weather. OK with us, as long as we made it back safe and sound. We had a nice dinner waiting at our neighbors home tonight too, thanks Minerva. It was a whirlwind trip and we enjoyed every minute. We could have never done it without the generosity of all you that love and support us through this difficult journey. You can never imagine nor descibe the power of the human spirit until you experience something as life changing as this. It is comforting to know that there is always SOMEONE I can lean on at anytime. Tomm I will be posting some of the 200+ photos that were taken.