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.

Tuesday 11am

No updates yet. He was at the scan for quite awhile. I got a nice nap in :)

Monday Night

Jon was up and down to radiology today. It took most of the day to watch the contrast go thru his system. Every hour or so he would have a x-ray. His GI system is moving quite slow, which was expected. The decision was made to have the scan of his liver in the am. He is having the scan at 8am. Then we will have a better picture of what is going on. Right now there is an Internist, Oncologist, Gastrointestinal, Pain and Liver doctor following him. We have had great care at Abbott Northwestern. Will update when we get a plan. I will also post when it will be OK for visitors. You can always text me too. Goodnight :)

Monday AM

Good morning. Jon says he feels delirious still. He needs rest! We ask that you hold off on visiting today. I spoke with the GI MD last night. The biliary ducts of his liver are not flowing like they should be. We need to do some imaging of his liver today. Right now he is having a test to check out his stomach and small bowel. The radiologist will be putting contrast thru his NG, then they will be taking x-rays as it flows thru the stomach and complete small bowel. The entire family and especially I are grateful for all the continual love and support during this difficult time.

Sunday 5pm

Jon is finally resting. I got here about 4:30 and he was in a deep, deep sleep. I really hope he will get some good rest tonight.

Sunday morning

Jon is confused this am. He actually called me and said he was delirious. He can not carry on a conversation, and we all know that IS NOT Jon. I spoke to the nurse and he just needs to rest and sleep. No visitors today. Please watch the BLOG to see when visitors would be appropriate. Enjoy the weather!

Visiting Jon

Jon is extremely fatigued and has a long way to go to build up his strength again. If you are planning to visit, please try to come between 10am and 2pm. That way he gets longer periods of rest.

Saturday 5pm

Not much of a game plan change today. The bowel obstruction needs to be resolved, so the NG will be in place for awhile to continue to decompress his stomach. Jon continues to have problems sleeping. He says that he hasn't slept more than 2hrs the last week. He is exhausted. Hoping to get some rest now.

February 11, 2011

Finally, the oncologist came in. The news is not nearly as grave as we thought. There is no evidence of a tumor obstructing his bowel. The bowel is twisted. There are 4 new tumors on his liver, but his hepatic pump therapy has been on hold since October, which was keeping away new growth. There could potentially be quite extensive cancerous growth in his periportal lymph nodes (between his liver and pancreas). Now we know what is wrong and need to put together a plan. He will need to have the NG in until the bowel resolves itself. Then we are planning on having a feeding tube inserted into his stomach. This would not be permanent, but in just until he gains some weight back. Thanks for the continual support.

February 11, 2011

Thought this would be best for you all to keep updated. Jon got very sick, very quickly. Last week we thought he had a GI bug, he had fluids and then his labs were ok so they went ahead with his chemotherapy treatment. This made everything worse. He couldn't keep anything down. He went in Friday for more IV fluids, which helped a little. Saturday was Campbell's 2nd birthday and he for no reason wanted to cancel any plans of celebrating it. We had a couple people over, and he came down and sat in the chair and watched the action for a bit and then had to lay down. I convinced him to go in for IV fluids again Sunday morning. He got on the scale and was 136lbs. We left the ER and he felt a little better. All during this he was having increased pain. He went home and laid right down. Monday he was suppose to have a CT scan and it was postponed until Wednesday, since he wasn't at a point of drinking contrast. At this point it was 10 days since he had any solids to eat. He laid on the couch and only got up to the bathroom, didn't go downstairs, and I would help him get comfortable, and get his meds. He was drinking, but it didn't stay down for long. He had a plan and was refusing to go to the doctor, even though everyone wa trying to convince him. He was fading fast and didn't realize it. Wednesday morning the priest came to the house and annointed him. He opened his eyes and spoke just briefly. He looked the worst I had ever seen him, grey and pale, just a skeleton. I finally lost it. Our families were here and I had everyone come with me and I told him the facts and that he had no choice to go. After some screaming, and more telling rather than asking he agreed to go to the hospital. I felt we barely made it. He was carried down the steps and put in the car. He complained he couldn't breathe, and we talked him through it to hold on. In the ER everything went really fast. His pulse was 149 and was just laying there. His pain was out of control and no pain meds helped. They started dumping IV fluids in him, giving him something for nausea, and attempting to control the pain. He was stabilized and admitted to the hospital. Thursday morning the pain was better controlled, but still there. He was started to throw up again, and about lunch time he was in uncontrollable pain. I convinced him to have an NG (a tube inserted into his nose that went to his stomach to suction whatever was in there), so then he would be able to drink and not worry about it coming right up. The RN inserted the tube and within 5 min 2,300 mls of bile then liquid stool came out. Jon has an obstruction of some sort and that is why he couldn't keep anything down. Boy, he felt better after this. He has been happy to drink whatever he wants since. Today is the big day we find out what is obstructing him. He has a CT scan around 1pm and we hope to get results sooner than later. We are praying hard and hoping for the best. More than ever I am grateful that he is here with us today.

Saturday July 31st

Hey Everyone. All is well at the Holmes house. Campbell is nearly 1 1/2 now, running around and entertaining everyone she meets. Blake is perfecting his golf game, and preparing for his college applications. Jon had his 80th chemptherapy run on Monday. He still goes every other week for systemic chemo at Abbott. In June he had surgery in NY, an ablation on a spot on his lung. He went back in July and had radiation on some enlarged lymph nodes outside his liver. He is due to have another PET scan in a couple weeks. We are praying everything has worked. Thanks for all your continual love and support.

January 30th

Jon has been trying to bounce back from systemic chemo this week. He was really tired after this last treatment. It actually was his 60th chemotherpy run. He is spending the weekend in the drivers seat with Campbell, while I work. Jon, Campbell and I are going to New York this Tuesday for 2 days. Hopefully the weather will cooperate for our us.

Monday 12/21

Jon is finally in the air on his way home. We recieved good news today. His tumors are shrinking!! He is responding to the treatment, which is great. His liver function blood test came back high, so he did not get the hepatic pump therapy. The oncology team said this is commom with chemo going directly into the liver, and to not worry. We are glad that he is monitored so closely. He is to plan on going back in a month, when his liver function improves.

Sunday December 20th

We are hoping that Jon can get his flight out to New York today. New York has been getting tons of snow. He is due to have a PET scan and hepatic pump chemotherapy tommorrow. This is going to be a VERY SPECIAL christmas this year and we hope he can get in and out of NY in time. We believe this chemotherapy treatment is working and crossing our fingers the PET scan results come back with great news. Hope everyone is enjoying the holiday season!