So Many Ups and Downs

We've been on a roller coaster since the last blog.  We were thrilled that Joe beat the infection and then things weren't going so well.  We headed out to church on Saturday and Joe got sick during the service.  Typical Joe, "No big deal, I'll make it through" and then his drainage bag broke.  We had to run out of there.  We never made it to the movie because he was sick all weekend.  Then, he was scheduled to get his port put in and we spent 10 hours in the hospital.  It didn't work.  There was some kind of blockage that was preventing it from getting where it needed to end up.  They wanted to admit Joe, but he refused.  He had been through enough and wanted to be home.  We came home, kept him on constant hydration and took him back on Tuesday.  This time, they gave him fluids before the surgery and used a radiologist machine.  It worked!  We were excited, once again.  We couldn't use it for a week, but at least hope was on the way.  During all of this, Joe started his biological chemo treatment.  It made him extremely tired and he was a little nauseous, but not bad.  He got a slight rash, but this was to be expected.  All-in-all, a good treatment.  Then we went to the movie (it was so much fun), came home and slept and then stopped by Anna's and TJ's wedding reception (it was wonderful!). During all this time, Joe's bowels had stopped working....nothing.  We were so worried they were completely blocked.  And then he started vomiting Saturday night.  Again, he would not go to the hospital and so we worked through it the entire night and it stopped.  Everything he eats (although it's just clears), comes out the bag. Thank God we have the bag or Joe would be living in the hospital.  The bag prevents everything from backing up and minimizes the vomiting.  Then the AZ Cardinals won and things were just getting better.  We saw Dr. S today and were scared to find out what was happening. He told us that he was not overly concerned about it at this time.  He explained that anytime you introduce a new drug into a body, it is common for the bowel system to take a break and do nothing.  Since it started when Joe began the new treatment, he feels confident it's the drugs and not the cancer.  He also told us that Joe's cancer count is stable, which is a good sign too. We are praying he is correct and they start working again soon.  The bad news is Dr. F and Dr. Ong both agreed that Joe is not a candidate for an ostomy.  They explained that it is just too dangerous and could really set Joe back and cause issues worse than he is already dealing with.  Joe will just have to stay on clears until this biological chemo kicks it's butt!  In the meantime, he had his second treatment today and is home sleeping comfortably.  TPN is on the menu tonight with a side of clear soup and jello. 

XOXO
Sherrie

Joe Beat The Infection!!

We are so happy to report that things are turning around.  Joe's infection is gone.  He is doing so much better.  The prayers really worked this time!  Today is his last day of antibiotics and he will be free of the 2nd IV machine for about 4 hours a day.  Dr. S was so impressed with Joe. He kept saying over and over how strong Joe is based on everything he's been through.  Joe put 2 lbs back on (from the 9 he lost during this infection) and wants to put on more.  He's starving.  Dr. S put together the plan for us and is wasting no time.  Tomorrow morning at 6:30 am, Joe will go back to Chandler Regional and have the new port put in on the left side.  Monday afternoon Joe will start the biological chemo treatments at the cancer center.  These treatments are targeting the cancer on his bowels/colon.  The hope is it can kill the cancer that is squeezing his bowels (from the outside) and causing so much of the obstruction.  If he could get some relief, he may be able to eat something besides jello, popsicles, juice and broth.  If that goes well, Dr. S has found another treatment plan that will attack the tumors throughout his abdomen.  He said he can't administer it until Joe gets through this first phase of the treatment, so prayers needed that will work.  In the meantime, the new surgeon from Chandler Regional (Dr. F) is looking for ways to try and get Joe some ability to eat.  The TPN is just not enough to sustain Joe's appetite.  It's so wonderful that he has an appetite (so many cancer patients lose their appetite), but so frustrating that he can only handle clears.  Dr. F is exploring different G/J Tube options or possibly an ostomy (that's a long shot) so Joe can graduate to at least full liquids (cream soups, puddings, milk shakes...).  In the meantime, we are setting goals.  Joe hit the first one by beating the infection.  The next one is to get out of the house and go to church and then go to a movie sometime this weekend.  We just want to get out and feel normal.  Thanks to everyone for all the emails, text messages and phone calls.  Sorry I haven't been able to return all the messages.  Just know how much we appreciate them.

XOXO
Sherrie
   

Tough Times at Home

We got Joe home this weekend, but things have not been going well.  30 minutes after he was home, they delivered 4 huge boxes of supplies including a 2nd IV machine.  I knew I was in trouble.  Sure enough within the hour I was in training with 2 different nurses.  I spent several hours all weekend in training.  Unfortunately, Joe is having significant issues with this infection which requires so much attention.  He is on 2, IV machines, 16 hours a day. He gets 20+ flushes and meds per day, lots of prescriptions, fluids, TPN and both wounds are cleaned each day.  I wrap him in Press and Seal so he can take a partial shower.  It's amazing how much better that makes him feel.  Unfortunately, Joe is still having a lot of pain, vomiting, migraines, bloody noses, G-tube bags breaking and on and on.  They are possibly going to re-admit him to the hospital if we can’t get some of these side effects under control.  The nurse was here for 2 1/2 hours tonight and said we may need to take him there soon.  We are trying everything to avoid it, but we may not have a choice. We just want to get this infection cleared so he can get a port put in and get back to our old normal.  From there he can start the biological treatments.  We are losing time with this nasty infection.  We thank you for your continued support and ask that you keep praying.  This guy needs a break! 

XOXO

Sherrie

Getting Better

Joe is still in the hospital, but getting better each day.  They found another infection from the culture after they removed the port.  They said it was one of the worst "bugs" there is and could be "deadly".  We are so fortunate that Dr. S is on his game.  He wasted no time getting Joe to the hospital, getting him started on antibiotics and getting the port out.  It saved his life.  They started Joe on a 2nd antibiotic which is working great against this nasty bug.  Joe is improving a little each day.  The new plan is to get him home with daily home health care (2 nurses per day).  One will administer the antibiotics (different than normal) and the other for wound care (the hole in his chest has to heal inside out because of the infection).  He has two temporary lines in the inside of his upper arm for TPN and drugs.  They will be watching that very close as well.  I will continue administering TPN and other nursing necessities.  I'll just be so glad to get him back to our last, new normal.  When things like this happen, you appreciate the level you were previously at, because as we are learning, it can always get worse.  If everything goes to plan (knock on wood), he will be back in the hospital to have a new port put in on his left side within the month.

Dr. S has been doing so much research on Joe's disease and working with other Dr's throughout the country on Joe's behalf.  He was so excited to tell us about different things Joe can try to fight this awful disease.  Once we get this infection taken care of, Joe will continue the fight with a biological drug.  More to follow on that subject, but we literally broke down in tears when we saw the excitement in Dr. S's eyes.  It's a long shot, but it's a shot and in typical Joe fashion, he's ready to continue the fight.  He's amazing. 

As always, it's our support team that keeps us going so thank you all so very much.  We love you all more than we can even express.

XOXO
The Kahlers

Surgery Went Well

Just a quick update to let you know that Joe had the port removed today.  It was the size of a golf ball, purple and oozing unpleasantries.  The surgeon said it also had a hole in it from being used so often.  They removed it and cleaned the area well.  They can't put a new port in until they are sure the infection is cleared.  They tried putting in several temporary lines, but they collapsed throughout the day.  Joe has been poked more today than he has since this whole thing started.  He has a high tolerance for pain, but today really pushed him to his limit.  They finally used an ultrasound machine and got a temporary line in so he can get fluids and antibiotics.  They are going to try and put another line in tomorrow for TPN.  They will have to wait a few weeks before they can put a port back in on the other side.  We're hoping to have Joe home within the next couple of days.  Until then, we're back on the 4th floor where they treat Joe like a VIP.  They went out and got him red popsicles when they heard he was coming back.  It's the little things...

XOXO
Sherrie

Joe is Back In The Hospital

I mentioned in the last post that Joe had a port infection.  In typical Joe fashion, he kept the pain from everyone until it got too bad to hide.  He has been running a fever, having chills and not able to sleep.  The doctor took one look at him and said we have trouble.  He sent us straight from his office to the hospital.  They immediately started IV antibiotics.  They have to remove his port (hopefully tomorrow), let the infections heal and put a new port in on the other side.  He has to have a port for his TPN and they can't put another one in until they are sure the infection is clear.  Since Joe can't eat and he can't have TPN through a regular IV line, he has to stay in the hospital because other issues could arise.  In addition, his tests came back with issues and they want to make sure it's related to the infection and not something else. 

We were reflecting on the Daddy-Daughter Dance all week (and especially today) as we realized that our original date was 9/28.  Joe told us he wanted to have it on 9/21 and although that was much more challenging to pull it in a week, we accommodated Joe.  How did he know he would not have made it on 9/28??  We have an idea....

I again want to thank everyone for that most memorable event.  We have just been basking in the memories.  We keep looking at the pictures, reading the banner that was signed by everyone (we hung it in our house), reading emails and cards from everyone and just re-living the day over and over.  Thank you CBS Channel 5, St. Hill Bridal (Dyane, Melynda, Marilyn and family), Kachina Heat, Unique Images, Envision Entertainment (James Craig), MVP Tropies (Ray Rawlins), Pesto's (Frank and Debbie), Valle Luna (Diana and Joe), Texas Roadhouse (Tom and Carol Lawless), Barb's Bridal, MNM Production, Bob Rink Photography, Friendship Village, St. Andrew the Apostle Church and Seton Catholic High School.  We also want to make sure everyone truly knows how deeply appreciative we were for making that day so special for us.  Stay tuned for further news on where the donations went.  We are still collecting from the silent auction and as soon as Joe is released from the hospital and we have collected the rest of the money from the auction, we will be "Paying It Forward" on behalf of our incredible support team.  

Please keep those prayers coming and thanks for all you do for us.

XOXO
Sherrie