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!

Campbell's 9 month photos

We received Campbell's photo slideshow today. The photographer did a fantastic job. To view slideshow go to www.sewellphotography.com/holmes. Enjoy!!

Saturday November 21st

Jon heads out to the "Big Apple" this week. He has had 2 rounds of systemic chemo in MPLS and is going to NY for his 2nd hepatic pump therapy. His tumor marker (CEA) has gone down to 1.1, which is great news! He is struggling with weight loss though, losing 5 lbs over the last 2 weeks. Jon has lost 20+ lbs since surgery. He has his horrible rash back from the chemotherapy, and hasn't been sleeping well at all. We continue to have fun through all of this and pray all will be OK. Have a Happy Thanksgiving!!

November 4th

Jon had systemic chemo for most of the day on monday. He hasn't slept well since then, but continues to keep up with family life and work. Campbell has now started clapping, giving "high fives" and doing "soooo big" with her arms. She will be 9 months tommorrow. Thank you for your love and support.

Tuesday October 27th

Jon is off to New York again today, traveling solo. He will be having a baseline PET scan, and meeting with his surgeon and oncologist. They are going to be starting the chemotherapy through his hepatic pump and putting a plan together for his systemic chemotherapy he will get in Minnesota. Most importantly, he needs to speak with the surgeon regarding when he can pick up and carry Campbell.

Home at Last!!!

We finally arrived home around 6pm tonight. It feels wonderful to be at home. After a long day, Jon is resting on the couch trying to control his pain. Jon has to go back to New York next thursday for scans and hepatic pump treatment. His systemic chemo will be done in Minnesota with the oncology teams in New York and Minnesota working together.

Monday

I am at the hotel and just called Jon's nurse. He went down around 12:00 for the hepatic pump study and isn't back yet. Last night was rough. He said that he was quite nausiated. He continues to have his pain managed with fentynl patches and pain pills. Will update you all when I get word.

Saturday - Pain Control

Just left the hospital. Today Jon is transitioning off IV narcotics to a fentynl patch and pills as needed. It has been a tough day for him. Jon is so strong, even though he is in a tremendous amount of pain healing from this surgery. He counted 40+ staples in his incisions. He has an L shaped incision where he has been cut open before, and then a new incision on his left lower quadrant, where the hepatic pump is placed. The hardest part of this whole situation is that he can't hold Campbell. She sat on the bed with him for awhile and did her alphabet cards, which he just LOVES to do with her. I am amazed at how many people know her name. I walk the halls with her and everyone says, "There's Campbell...Hi Campbell...Is this the baby everyone is talking about?...She is the most beautiful baby." She continues to bring smiles to everyone she sees. We will see how Jon does tonight with the new pain regimen. I will make sure we have a handle on the pain before he is discharged. They will do a check of his pump and evaluate the pain tommorrow, and if all is OK he can go. We have flight back on wednesday morning. We are going to need some help with Campbell when we get back, since Jon will not be able to hold or lift her for 4-6 wks. She is crawling all over and would love to play if you have the time and energy to spare.

Saturday 1pm

All continues to go well here out east. Jon now has a private room, which makes him much more at ease. He looks better, and is up walking around the halls...slowly but surely. The only new issue is heartburn, which they are giving him protonix for. The kids and I are getting used to public transportation. It is cool again today, but not raining. Thank you for all your love, support, and prayers! Love to you all!

Friday

Jon has had a good day. He got up walking last night and today. He even went down to the cafeteria with Blake, Campbell and I. He is still on a fentynl PCA, a continuos pain drip. Jon has been up in the chair today most of the time, because it is more comfortable than the bed. His "grumpy" roommate just left, but they are actually planning on moving Jon to a private room. The weather is in the 30's, so I have been inside all day. Campbell has done great the last couple days with all the waiting and has brought a smile to many faces we've seen.

4:15 update

Jon is finally being moved up to his room. His pain is better controlled, after resting awhile in recovery. Hopefully he can rest tonight. This will be the first time he is in a double room.

Post-op

Jon having some pain issues post-op. He is still in recovery getting pain controlled. When he is more comfortable he will go up to the floor.

DONE

Just spoke to surgeon. Pump is placed!!!! Jon is doing well in recovery. The doctor was most concerned about spots in abdomen. He looked all over and didn't see any evidence of disease, which was the biggest win for the day. He removed some lymph nodes, but didn't touch the spots in the liver. Dr. D'Angelica said that Jon's liver is encased in scar tissue, trying to get the spots now would be too risky. He can have the spots removed percutaneously later. I am sooooo greatly that all has worked out. The Holmes family is due for some good news :)

10am update

So far so good. The spots in his omentum are NOT cancerous!!!! The surgeon is now making his way up towards the lymph nodes by his liver, and hopefully remove them before putting in the pump.

Jon in OR

I just said good-bye to Jon at 7:45. They are going to take a laproscopic look around inside his abdomen before making a cut for the pump. He has some questionable spots in his omentum (abdominal wall area). We are very nervous, hoping everything looks OK and they can place the pump as planned. Keep the prayers coming!!

Campbell 2 months old

 

Baby Campbell

We are happy to anounce the arrival of Campbell Evelyn Holmes. She was born on February 5th, 7lbs 12 oz, 20.5 inches at 11:36am. She is an exciting addition to our family.