April 14th Update-- Plus Pathology Results!

What a difference a week makes! Kaden has been doing SO good with his recovery! He is able to eat more food. He still doesn't eat a lot of food, but he is able to have a lot of variety in the foods he eats, so that has been nice. He has been able to stay hydrated and he stopped puking a couple of days after my last post a week ago. 

We are now in the phase of, "What is he supposed to do all day?" He has been able to do a couple of projects around the house that are little and don't require a much body strength. The other day, he went for one of his usual laps around the cul-de-sac. I didn't go with him because I was trying to get ready to go somewhere. I was in my bathroom when I heard the weed wacker going. I went over to the window and saw this

I banged on the window, threw my hands in the air, and gave him a "What the heck?!" look.  He turned around and put the trimmer back in the garage. When he came in I said, "What are you doing?!"  He replied, "It needed to be done." Ha ha! We had a very small (4x2) patch of grass that woke up and grew about a foot taller than our other grass that hasn't started growing yet. It looked awful, and it annoyed Kaden every time he walked by it. It was only a 5 minute fix, so I should have done it, but it wasn't on the top of my priority list at the moment. Apparently, it was on his list though. Ha! 

We were expecting him to be a lot more bed ridden than he has been. He has been able to be up and around and that has gone a long way toward his mental health. Car rides still make him a little nauseous, so he mainly sticks around home.  Another reason he sticks to the house is that we never know when he will lose his energy and feel yucky. One Minute he will be doing great and be up doing things around the house like usual, and the next minute he gets really tired. Not tired like he has to sleep, just worn out like all his energy was zapped, and he will have to immediately sit down and rest for a while. I made him take this picture this morning so I could show you how great he is doing. I love that he humors me when I force him to do things like this. 

Yesterday, we went to the follow up appointment with his surgeon at Huntsman. We told her everything that has gone on with his healing this last week and she said that he is doing exactly how she expected him to be. She talked about diet and the weight he has lost. She told him, "no more empty calories" and that "included water." He needs to find calorie filled ways to get hydrated like milkshakes, protein drinks, or even fully loaded soda---no diet anything. She said because he can't eat much food he shouldn't fill his belly with water because we don't want to take what little room he has in his stomach and fill it with nothing. He has lost around 12 lbs and we are hoping that will be it. She said that the body uses any and all calories toward healing, and once the healing slows down, so will the high demand for calories, and he should put the weight back on. 

Pathology Results

So the pathology results are hard to understand and hard to explain. So I will start off with the results were VERY good! 

Basically, the sticky mass was PMP but not "cancer" in the typical sense that we know. I didn't know how to explain PMP so I googled it and this is what I found: 

"Doctors often call PMP a borderline malignant condition. Malignant means cancerous. Cancers usually spread to other parts of the body through the lymphatic and blood system. PMP doesn't behave like this and it doesn't spread to other parts of the body."

The cancer we usually think of is the kind that spreads to other parts of the body thorough the lymphatic system and bloodstream. PMP is a bi-product of cancer cells that are very sticky and mucinous. There are cancer cells in the PMP, but the mass wasn't a "cancer" tumor. The doctor said that she has never seen that before. Usually, if its PMP it is all over the belly, so she was expecting the mass to be a tumor since it was located in only one spot. She said that this surprised her, so she had the pathologist check again. Again, it came back PMP only. 

There were 5 things that the pathologist examined. These were the results. The first one is the mass they removed.

1. Right Quadrant Upper Mass- Mucinious Carcinoma Peritonei. Low Grade. Consistent with patients known appendiceal adenocarcinoma. (This is what I explained above. The surgeon said ignore the word carcinoma as that was just the name of the PMP, but it is not typical "cancer." This is PMP that grew from cells that were left over from his surgery 3 years ago.) 

2. Additional Pancreatic Margin Biopsy: Focal Carcinoma Peritonei. Low Grade and separate cauterized pancreatic parenchyma. (The Focal Carcinoma Peritonei was part of the mass they pulled off. With that mass, they also shaved off some tissue from the pancreas that was attached.)

3. Omentum- Omental tissue with fibrous scar.- negative for carcinoma (YAY!)

4. Ileocolic Anastomosis Resction- Ileo and colonic mucosa with focal ischemic mucosal changes- Negative for Carcinoma. (Double yay!) (This was the where they had to make a new connection on his bowels at the same site from his previous surgery. The tissue they cut out was negative for cancer.) 

5. Falciform Ligament, Resection- Fibroadipose tissue with mild active inflammation. - Negative for Carcinoma. (Another part of the resected tissue that didn't have cancer.) (Triple YAY!!!) 

So basically the PMP is a lot of junk that can grow in your belly and cause all kinds of problems with your digestive system. Luckily, we caught it early before it could do much damage. We are also lucky there wasn't any "new cancer" in there. 

My prayers for the last 2 months have been, "Heavenly Father, please give us the miracle." 

For all intents and purposes, we have received it. Obviously, no cancer and no PMP would be amazing, but realistically, that isn't possible. We have already boarded the cancer train. The miracle that Kaden is ok, that there wasn't any new cancer found, and that his recovery is going so good, is enough to calm our troubled hearts and help restore peace to our souls. 

We want to thank EVERYONE who has been our angels here on earth to help us through this time. We know that you have fasted, prayed, dropped off food, entertained our kids, sent a text, made a phone call, sent a message over social media, cleaned our house etc etc etc. We cannot ever begin to say thank you, but we want all of you to know that what you did for us was a HUGE part of our miracle as well!

April 8th

Last night for Kaden was a bit rough. He was feeling pretty full (which is common after this surgery) and felt like food and drink was not passing through. The doctor said that he could have times of ileus (where his bowels don't move) from time to time. We think last night was one of those times. The problem with your bowels not moving, is that everything that goes in has to come out somehow. 

He felt pretty backed up and unfortunately threw up a couple of times in the night. After throwing up, he felt much better though, so I guess with every bad thing comes something good. 

This afternoon, we were talking about his hydration and wanting to stay on top of it. We didn't know how much liquid his body actually absorbed before throwing up. 

Luckily, we have the most amazing oncologist here in American Fork. He has an infusion center attached to his office where he does chemotherapy. The doctor was not in the office today but the infusion center was open. Kaden gave them a call on the off chance that they might be able to squeeze him in and give him a bag of fluid. 

We must have called at the right time, because they said if we could come in right away they could squeeze us in. We only live 10 minutes away so we hopped in the car and away we went! 

It took about an hour, but they were able to give Kaden 40 oz of fluid through an IV. This helped to put our mind at ease especially since we are heading into the weekend. We didn't want to end up in the ER just for a bag of fluid. 

Funny story from today at the oncologist office. We were sitting in the waiting room waiting for them to call Kaden back and I was trying to make small talk with him to take his mind off feeling cruddy from the car ride. I showed him peace of my finger that is super sore from where I ripped a hangnail off earlier this week.  I said, "Yeah, it REALLY hurts! It's been hurting all week!" He just looks over at me and in a very kaden-y sarcastic tone said, "I'm so sorry YOU'VE been in SO much pain this week!" I just started cracking up! I love that here I am complaining to a person who just had the "Mother of All Surgeries" about a hang nail!  I also LOVE that he has the sense of humor to call me out on it! We both got a good chuckle out of that one! 

His diet is still pretty light. To give you an idea of what he eats, today he had a piece of white bread, a 1/4 cup of cottage cheese, a piece of cheese, and a scoop of vanilla ice cream.  (Sounds super filling for an entire day right?!) 🙄 The surgeon said that it is very common for people to lose 15 to 20 lbs with this surgery. We think that he has already lost 10, so we are hoping that things start moving along so he can start taking in more calories. We decided this evening that the name of the game is really quality over quantity at the moment. So we're going to shoot for more soft proteins, and protein drinks for the next little bit. The surgeon said the good news is that even though everyone loses, everyone gains it back. Which is good for Kaden because he didn't have any to lose in the first place! Crazy side note about that, we have to give Kaden a blood thinner shot every morning, which is not a big deal, except for the fact that it has to be injected into fat. We are really struggling to find any fat pockets! He seriously doesn't have one piece of fat on his body! Today when I was putting it in he said it burned and we think it was injected into his muscle! Oops! 😬 The pharmacist warned us that might happen because he is so lean, but it's not a huge deal, we will just try again tomorrow. 

The rest of the afternoon/evening was great! He was able to do 3 more walks which is 3 laps around the cul-de-sac each walk. By the end he is pretty tired so he comes home and pretty much crashes. The doctor told him his schedule needs to be walk, eat, sleep-- repeated all day long. 

To be honest, this healing process is quite the roller coaster. We keep saying how it feels like we take two steps forward and then one step back. We never know minute to minute how he is going to feel so we take advantage of the time he is feeling good to get some things done, move around, eat, shower, etc., before the icky feeling comes back and we start the process over again .

April 7th 6:00pm

 He's Home!!!

Yesterday was a good day. Kaden was unhooked from all the tubing and was feeling pretty good. They basically kept him under watch to make sure that he was able to keep food down and that pain could be kept under control with oral medication. 

He had a bit of a rough night last night. He couldn't sleep and had a weird coughing jag that made him throw up a couple of times. Kaden was worried that it might put his discharge from the hospital back another day, but the surgical team felt confident that it was from the coughing and not from the surgery. 

The discharge team came around noon and we were walking out the door around 1pm. I made him take one last picture just before we walked out of the room. He was feeling pretty good, so he was able to walk to the car and not be wheeled out so that was a good feeling. The brown paper bag in his hand is all of the meds he needs to take over the next 3 weeks...and yes it is FULL! So crazy! 

The drive home was a bit emotional. I think the time he spent in the hospital felt a bit like "survival mode," but when he got to the car the gravity of the situation and surgery finally caught up to him. He said, "I can't believe what I just did!" I said, "Yeah, it's crazy," and we talked about the week and the different experiences we both had. 

When we pulled into our cul-de-sac we saw a sign the girls and our neighbors put up in our yard. It really lifted Kaden's spirits to know that so many people care for him. Then we walked into the house there were posters on the doors and on the walls from our kids and the neighbor kids. It was really cute and super sweet of them! We sure love our little cul-de-sac and the neighbors/friends we have surrounding us!

We were able to get Kaden showered and into bed. It is amazing that something seemingly so simple takes so much time when you are recovering from a surgery. Since we have been home, Kaden has been feeling all over the place with pain and nausea. One minute he is good and the next minute he is in pain and feels nauseous. We called the doctor's office and they were able to prescribe another medication for nausea that is a little stronger than the one he came home with, so we are hoping that helps!

One of the things that relieves the pain is walking. It's weird because it seems so counter-intuitive. Usually if you feel bad, you lay down or slow down; the last thing you want to do is walk. However, walking helps keep the bowels moving so you don't get backed up and relieves a lot of pressure. Luckily, the weather is co-operating and allowing us to do laps around our cul-de-sac every couple of hours. Kaden said he hates that he has to be so public about his recovery, but the pain is stronger than his pride, so outside to walk we go! 

The last lap we did, I told Kaden to stand by the sign and fake a smile. He is so good to humor me even when he doesn't feel great! Ha!

April 5th 4:30 pm

We have movement people!!

Kaden had a great night and morning. His bowels started to wake up a little bit today. This has been so great to relieve some pressure in is abdomen. It is still hard as a rock, but not as puffy and distended as it was. Even though we are taking small steps, it was nice to see that his body is doing what it needs to recover! 

They upgraded him to a "full liquid" diet. He still doesn't get any hard foods, but he has a little more options than broth and water. When he found out he was upgraded he ordered a vanilla milkshake, chocolate pudding, and a strawberry instant breakfast drink. He has to take things real slow, so he couldn't eat much of it, but he just wanted to have different tastes in his mouth. 

He had some nausea this morning that they were able to control with meds. He went on a good walk today and will go on another one here in a bit. He was able to be off oxygen this morning for a while and did pretty good, but has to have it back on when he sleeps or lays in bed. 

All in all, I think we are on the right track for recovery. Kaden asked his care team how he measures up to other HIPEC patients, and they said he was basically on par with others, so that was good to hear! (Even though we know he is a superstar and think he is doing better than all the other HIPEC patients. 😉) 

April 4th 6:00 pm

Kaden has had a decent day. He was up and walking around this morning. He was able to do more laps around the nurses station, waiting room and elevators. His strength is improving more everyday. 

We think his bowels are trying to start to wake up a bit now. We keep hearing gurgling sounds but no movement yet. His belly is very hard and distended today. The Dr tapped on it with her hands and said, "Do you hear that? That hollow sound like a drum? That is because the stomach is full of air." It will be hard like that until the bowels wake up and it can work its way out. 

Kaden hasn't had any "food" (liquid by mouth) today. He doesn't want to push it since his stomach is already so full. If he has too much in his belly and his bowels aren't awake, it will all come back up as vomit, and we are not wanting that to happen. 

So technically he hasn't had any solid food since Wednesday the 30th. He keeps saying that the food commercials on TV are taunting him. He is making a mental list of everything he wants to eat when he can have food again. If you are interested, DQ has the most convincing commercials. We call those commercials "food porn." ha ha! 

He was able to take a proper shower today, which I think goes a long way towards feeling like a human again. I think he may have pushed himself a bit too much because he started having a bit of pain. He thinks the pain is related to things trying to wake back up in there. Unfortunately, with the pain, brings the nausea. So we have been chasing that just a little bit today. Fortunately, they have really good drugs here, so the discomfort is manageable. 

He is resting now and hopefully he when he wakes up we will be back in business again and he can keep trying to move. The Dr said the only way to get things moving inside his belly is to move his body and eat. Obviously he can only do one of those so the more movement we get the better! 

Whitney is here again with me today. She has been so helpful and it has really been an education for her to watch the nurses and everything they do. I asked her if it scares her to go to nursing school now and she said "Nope!" This girl is ready to go! Fall can't come soon enough for her. 

Just thought I would end with a couple of pics of my current view.... in case you are interested to see things from my seat....

April 3rd 3:00 PM

 

Kaden has been awake most of the day today which has been really good. It has been nice to visit with him and have actual conversation. 

The girls were able to come visit and I think that was a good mood lifter for him. Whitney stayed here with me while the other girls went home. We were able take him for a walk this afternoon and he did great! He did two laps around the nurses station, waiting room, and elevators. Which is actually a decent distance for a new walker! Kaden was noting how it's so weird that last week he was running all over playing pickleball for hours at a time, and now he is struggling to walk slowly around a room with a walking tower. Our bodies are truly amazing machines! 

We are back at the room now and he is resting. We are hoping he gets a good nap in so he can be ready for another walk and hopefully a shower later. :)

April 3rd 11:00 am

Kaden is continuing to do well on his way to recovery. 

He was able to do some PT yesterday. He was able to get up and walk slowly with some assistance. The physical therapist said that Kaden was doing really well! Kaden was able to get up and walk around the nurses station and was able to do a second walk later on in the afternoon. 

He was also able to get up and sit in the chair in his room for a bit. 

                                                   I made him smile at me for this one! :)

Last night there was some confusion over some lab work and they thought at one point that he might have to have another CT or possibly a blood transfusion, but they decided that the lab work was just showing his body having a response to the chemo. (I'm sorry I don't know much about that, my MIL was here with Kaden and I really didn't get a good update on that one so I can't explain it correctly.) Anyway, I think that we are all good and it's not a big worry. 

Kaden was moved out of the ICU onto the surgical oncology floor. He was also given the all clear to start eating clear liquids. Upon hearing this Kaden quickly ordered an Italian ice, Jello, and a Pepsi! He said, "I'm not going to eat it all, but I want some of everything!" Although it is hard, he is trying to go slow so it doesn't make him sick.

He hasn't had any nausea since yesterday so we are encouraged by that! He is planning on getting up and taking a shower today too. We are grateful for all his movement! 

Although he is able to wake up and do all of these things, his energy only lasts so long and then he is back down and sleeps for a couple of hours in between. His body is doing a lot of healing so it will take time for him to get the wind completely back in his sails. 

We are just playing the waiting game now. They won't let him go home until his bowels wake up and start working again. We are hoping with more movement and being able to "eat" some clear liquids we can have them get the hint and figure out how to wake up and work again soon!