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.

Tuesday 930pm

The music and lights parade was awesome. Campbell had a huge smile on her face the whole time. It was fun for us all to watch her excitement. Tomm we have the limo picking us up at 9am. We are hoping all goes well with the weather.

Tuesday 6pm

We have been busy,busy,busy. Jon has kept up really well. Yesterday was a lot of fun at Magic Kingdom. We have tons of photos to share soon. We also stopped by Hollywood Studios for a couple hours. Today we went to Animal Kingdom, which was really nice. We went to a "Nemo" stage production. The costumes and set were unbelievable. It was about 80 degrees out, so we opt to go back to the resort to sit by the pool. Campbell loves, loves the water. We are now on our way to Magic Kingdom for VIP seating for the parade.

Sunday

We have had a great trip so far. When we arrived at the airport in Orlando there was a welcoming crew just for us. There were about 10 people with party hats, noise makers, flower leis, ballons and stuffed disney characters for Campbell. They were welcoming us and singing as we walked off the private aircraft. We took pictures and then hopped in a huge Excursion limo. The hotel is awesome too. We had some surprises in the room also. Jon did a lot of walking around the hotel and "Downtown Disney". Tomm is our big day in the Magic Kingdom.

Halfway to our goal

We need about $4,000 to meet our goal. Thank you to everyone who has donated. Every little bit helps. We are all soooo excited about this adventure.

Friday 2:30

Today Jon had a private tour of the new University of Minnesota Amplatz Children's Hospital. He couldn't go to the open house last weekend, so my wonderful boss gave him a tour. Thanks Jody!!!! He was just as amazed and excited as I was seeing it. Check it out on the web if you have a chance. It opens April 30th, and the care is exceptional. On another note I wanted you all to know that you can donate money using paypal. Go to www.paypal.com. Our account/username to send money is my email. lholmes3@fairview.org

Spreading the word...

It is totally fine with me if anyone would like to post anything on Facebook.

Thursday 10pm

Looks like we are off to see Mickey on Sunday. We decided to charter a private jet round trip. It makes everything so much easier. That being said....we have set a goal of $7,500 to raise to make sure this trip happens for Jon, without being too much of a financial burden. He had another good day. I am setting rules for him to pace himself and save all the energy he can for this trip.

Thursday 1230

Jon has been doing well since he came home. The last 2 nights he has slept well. It has been awhile since he has been comfortable enough to lay down in our bed most of the night. Of course we have a little princess between us at times too. Yesterday he watched Campbell at family dance class. Last night he wanted to get out of the house, so we went our .7 miles to Target and walked around. Today he went to her ECFE class. She is spending the day with Miss. Beth and I am doing some things around the house and napping. Jon is currently resting on the couch watching baseball. We are really hoping to take off to Disney this Sat, if all falls into place.

Tuesday Evening

Jon got home around 1pm today. I hooked him up to his TPN, administered his antibiotic and he is resting comfortably in bed. I had a heart to heart with him today and asked if he really wanted to take the trip. He perked up and said, "Yes!!!! I am ready. I want to take my little girl to Disney World". So tomm we are going to hammer out details. Biggest hurdle is exactly how we are going to travel there and back. We have a lot of housing options, and park hopper passes are ready. I want to get it all done ASAP, while he is strong and rearing to go. He is starting to retain fluid in his calves and even thighs now. Whenever possible he has those legs up. I realize many of you may not have a USBank around. I will work on getting a link set up tomm, so it could be done on-line. You are always welcome to send any monetary donation to the house also. 15737 Duck Pond Way, Apple Valley MN 55124. Thanks again for all your love and support.

Tuesday 1130

Just got back from the bank. To donate money you need to go into a USBank where I set the fund up. You need to tell the teller, "I would like to make a donation to the Jon B Holmes Wish Fund". They look up the account under the name. If there is an issue... ask for the supervisor, since this is not a common transaction for all tellers. Please contact me if you have any issues with this. I will be posting a letter the IRS is sending me, which you can print off as proof of your donation. Thank you for all your help. We are hoping this all comes together.

Tuesday

Jon gets to go home today. We are hoping to get out of here by 1pm. We need to wait for equipment and meds to be delivered to the hospital first. I am going to go over to the band right now and check on the "Wish Fund" status. Will will hope to have trip details figured out by the end of today!!!!

Monday

Jon had a triple lumen PICC line placed in his upper right arm this am. We are trying to figure out the best mix of pain meds for him now, otherwise he is ready to be discharged. He will need 4wks of IV antibiotics at home. He will also continue to get TPN for 12hrs overnight via IV for nutrition.

Sunday

Found out today Jon has had 3 days of negative blood cultures, which is great. He will be having a new line placed early tomm am. Right now he is still getting some IV pain meds. Tomm he is going to try another oral pain med. It would be easier to have oral pain meds at home, otherwise he will be connected to an IV pump 24/7. Today I stopped by to see him for awhile with the kids. This was a big day for me. It was the open house celebration of the new University of Minnesota Amplatz Children's Hospital. My family toured the new hospital with me, which was unbelievable. It is a state-of-the -art facility, and I am soooooo excited to work there. Jon wasn't able to go, which was hard for both of us. A lot of photos were taken, and I promised to get him a private tour when he is able. I hope you all had a great weekend. Pray everything goes well, and Jon gets discharged soon.

Saturday 5:30pm

Jon looks a lot better than yesterday. His pain is better controlled. We just got back from a 45min walk to the lobby, World Market and McDonald's. I stopped and got some funny movies on my way here, which we are going to watch now. Hope you are all enjoying the weekend.

Friday 10pm

Jon has had a lot of issues with pain later in the day. They are working on giving him more IV pain meds now. The oral pain meds are not being absorbed very well. It is hard for anyone to see him in so much discomfort. He sat in the hospital lobby for about 45min this evening and then had to go back to his room. Tommorrow we are requesting that he doesn't have any visitors. Jon and I would like to spend the day together. It has been hectic and we haven't spent much time alone together. Hope everyone has a great weekend. Ohhhhhh, the "Wish Fund" should be up and running Monday.

Maui December 2010

Maui December 2010

Friday 6:30am

Good morning. I just spoke to Jon's nurse. She said he rested on and off last night, by taking the same oral pain meds he had at home. Last night when I left he was soooooo uncomfortable. His abd is starting to get distended. It is hard for him to get comfortable. He is going to have his central line port out at 8am today. He was hesitant at first because he says it is part of him. He has had the same port since the beginning of his diagnosis. With the bacteria in his blood we need to take it out. Another line will be placed once he has a negative blood culture for 3 days. We need some prayers that he can find comfort and get this pain under control. Once again, thank you for all the support. I have sooooooo many calls and text messages, and it is hard to respond to all of them. If you would like to drop something at the house the best way to arrange it would be by texting my cell phone. It is hard to keep track of phone numbers at times. It was been an adventure trying to get all the correct documentation to the bank to set up Jon's "wish fund". I am going to have it finalized this afternoon.

Thursday 2:30

It has been confirmed that Jon has some bacterial growth in his blood, staph aureus. He will need IV antibiotics for awhile, and will need to get his port out and a PICC placed. We are still waiting for the infectious disease doc to see us with a plan. Thank you for all the hard work for "Jon's Wish". I apologize if I haven't gotten back to you. It is a bit overwhelming right now.

Thank you...

Jon and I are overwhelmed by the outpouring of love and support, especially today. So many of you are eagar to help Jon get his wish. I will be setting up an account tomm, you can send monetary donations to. Love to all !!!

Wednesday 4pm

Not the news we wanted. When they attempted to aspirate fluid from spot in Jon's liver, nothing came out. The spot was solid, meaning it was a tumor. The tumor has grown a lot since last weeks scan, which is very concerning that the disease process is speading up. We have been advised to go home on hospice. Jon has made it quite evident that he has 1 big wish. He wants to take the kids to DISNEY WORLD. He wants to be with Campbell the first time she goes there. So I am sending out a big wish list. If anyone has any contacts or can pull some favors to give Jon the this very important trip of a lifetime we would be forever grateful.

Wednesday

Jon is going down to have a procedure done in radiology at noon. They are going to attempt to drain the abcess in his liver.

Tuesday 11:30pm

Jon is back in the hospital. The homecare nurse called this evening and said his white blood cell count was really high. I then took his temp and it was high too. We went right up to Abbott. More blood tests and a CT were done. We found out that he more than likely has some sort of liver access. He waso started on IV antibiotics right away. My wonderful brother was with the 2 of us, and was very helpful interpreting his scan for us (the ER doc left images up for is to look at), comparing the current scan with last weeks. I left the ER at 1045 to get home. Barney stayed with Jon and will be with him when the admitting doc comes in. Hopefully we can get some answers in the am.

Tuesday 4pm

Jon resting most of the day today. A homecare nurse came out and took some blood to check his labs. They need to follow labs so they get the right TPN recipe. Last night he had a slight temp, but it was better this am. Thank you for all the well wishes and words of encouragement.

Monday 11am

Jon had a pretty good night at home. He had some good periods of sleep. We have been giving him his breakthrough pain meds along with his scheduled pain meds. Blake and I shoveled last night so it wasn't so bad this am. I am hoping to get Campbell out on her sled this afternoon. Enjoy the snow.

Sunday Night

Jon and I made it home around 12pm. We got settled, took a nap, and then homecare came over to show me how to run his IV TPN. He will be getting TPN 12hours overnight. It is great to have him home. Campbell ran right up to him when he walked in the door and said, "You do ring-a-round-the-rosy". We are hoping he has a restful night.

HOME

Getting ready to go to the hospital. JON IS COMING HOME TODAY!!!!@

Saturday

Haven't seen Jon yet today. Thanks to my wonderful cousins Karen, Mary Beth, Hazel and Clara I have a spotless clean house. After a quick nap I am going to take the kids up to the hospital.

Friday Evening

I have been home most of the day with the kids. Jon has done pretty well today. He had two small meals/snacks. Pain wise, he just asked for some IV pain meds. His abd is quite sore where they placed the gastrostomy tube, and his lower back he thinks from his upright position in bed most of the time. This am we met with homecare. He will be getting IV TPN for nutrition during the night at home. I will be able to manage it all, since I have used the same pump at work with patients. Everyone has stressed the importance of Jon going home and focusing on resting, getting stronger and trying to gain weight. He will follow up with the oncologist in 3 weeks. At this point his body could not handle anymore chemo. He needs to put on a good amount of weight and have a stablization of his liver function tests. He is a fighter, and we do believe miracles happen. Kiss your loved ones goodnight...

Friday 2pm

Today we met with different doctors and services to start getting ready for discharge. All his meds are to be given by mouth and not IV, and he started eating solids this am. Hoping to go home early next week. Will update more later.

Thursday Evening

With Jon now. He looks great!!!! He looks the best of the last 2 weeks. I believe in him, and the strength he has to fight this horrible disease. He can only have ice chips tonight. Will start with clears in the am. Pain is under control.

Visiting Jon

I know many want to visit Jon, but his main goal is to rest and get stronger. We have decided that tomm 11-1pm he would be open to visitors. Then tomm eve btwn 530-700. He can't visit long at all, but would love to see some smiling faces. Thanks.

Thursday

The tube is placed in Jon's stomach. He told me he rested well last night. He looks better everyday. The rest has helped out tremendously. I am going to stay with him tonight, which will be nice for both of us. I appreciate ALL the offers to help, and I am sorry that I can't get back to everyone. I know there are sooooo many people that love and care for Jon, and all the cards, calls and nice words of encouragement are the best medicine. Right now we are thinking he will go home early next week. I WILL be asking for help when we get on a home schedule. Enjoy the day and don't forget to tell your significant other how much you love them. Everyday is a gift.

Wednesday 3pm

The stent is in and working. All went well during the procedure. He still feels quite tired, and needs a good nap. Planning on placing decompression tube (PEG) into his stomach tomm. Then he will not need the NG in his nose anymore.

Tuesday 3:30

The oncologist just came by. We didn't get any news we wanted to hear. His scans show that he has small little tumors throughout his peritoneum/abdomen. They call this cancer progression "seeding". At this time there isn't really any treatment that works. We just need to pray for a miracle. We are still planning on having a stent placed in his liver tommorrow.

Tuesday 1pm

Results of liver MRI show that one of his bile ducts is quite dilated there is a tumor obstructing a duct. A gastroenterologist is going to do an MRCP tomm. He will be opening the blocked duct and placing a stent.