Pay It Forward

They aired Amanda's story on TV last night and will repeat the story on the Saturday news on Channel 5.  Here is the link to view it on line. It was wonderful to watch and we are all so appreciative of Amanda's co-workers to nominate her for this award.  We will be organizing an event so we can "Pay It Forward" to others struggling with this horrible disease.  Watch for more information about that soon.

http://www.kpho.com/story/23295691/daughters-of-dad-with-cancer-wish-for-father-daughter-dance

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PAY IT FORWARD

Daughters of dad with cancer wish for father-daughter dance

Posted: Aug 29, 2013 8:01 PM MST Updated: Aug 29, 2013 10:10 PM MST

By Pat McReynolds - bio | email

 

(Source: CBS 5 News)

PHOENIX (CBS5) - A Valley woman wants more than anything to have her father someday walk her down the aisle, but an aggressive form of cancer is robbing her of that dream.
"It's the absolute worst thing. My dad is my best friend. He's my absolute best friend. I don't really know how to function without him, to be honest," Amanda Kahler said.
Her father, Joseph Kahler, was diagnosed with appendix cancer two years ago and no one can say how much time he has left.
Joseph Kahler has bravely endured many experimental treatments to maximize his time with his family.
"We had to come to terms with the fact that our dad probably wouldn't be around to walk us down the aisle, so we wanted to have that dance with him so that later in our future, we could have that at our weddings," Amanda Kahler said.
They decided to host a fundraiser for cancer research that would celebrate their dad's life and include a father-daughter dance.
Amanda Kahler's friends are paying it forward to her and, with the help of CBS 5 Pay It Forward program, presented her with $500 for the event.
The $500 won't go very far in securing a venue, a D.J. and a caterer, but her friends hope others might be touched by her story and want to help also.

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On the home front, Joe is doing OK.  We have some decent days and some days we all struggle.  Yesterday was his best day in weeks.  This seems so silly, but yesterday Joe took the trash out.  He was thrilled.  And then the AZ Cardinals won their pre-season game and then we watched Amanda's story on the news.  What a wonderful day.  

Joe has not started the case-study chemo yet.  Unfortunately, it was denied by the manufacturer.  The doctor told us that he filed an appeal and sited various reasons why Joe would be the perfect candidate for this case study.  We should know by next week.  Until then, I continue improving my nursing skills as Joe and I have developed a good routine for IV feedings, G-Tube maintenance, wound care, bathing, medication dispersion and overall care.  I feel blessed that I am able to do this for Joe and thank our family and friends and my Honeywell team for all the support in allowing this to happen.  You guys are amazing and Joe and I and our family think of you and talk about all of you every single day.  It's the best medication we could ever receive.

With all our love and gratitude.

The Kahler's 

Amanda's Going to be on TV

Amanda is going to be on TV, tomorrow Thursday, Aug 29th, Channel 5 CBS affiliate, 10:00 pm.  Her co-worker wrote this which explains what it is all about.  I will post the link to the website after it airs tomorrow night, but wanted to get this out so those local can watch tomorrow night.  They truly surprised Amanda.  Stay tuned for the event now.  We want to Pay It Forward....

"Today was one of those days where it was truly hard to focus on work because of amazing things happening around me. My co-worker Jyl Acheson wrote a submission to CBS Channel 5 Pay It Forward on behalf of our other friend & co-worker Amanda. Amanda has been trying to find a donated venue to host a charity function to honor her dad who has been fighting a very rare form of cancer. Jyl's entry was selected & she was able to give Amanda $500 to get the ball rolling for her event. I am so excited for Amanda's family, so proud of Jyl's persistency & tenacity to brainstorm ways to make money for this cause, & so honored to be a part of it all, including being interviewed on camera as well. The piece is airing this Thursday at 10 pm. We all have hopes that it will garner donations & support for Amanda's family & trooper of a dad, Joe."

He's Home!!!

After 16 long days, Joe is finally home from the hospital.  The homecoming was anything but smooth.  In fact, it was a disaster.  Before I get to that, I'll update you on what has happened since the last update.  Joe did have the G-Tube stomach insertion surgery.  He could not stop vomiting and so they inserted a tube from the outside of his stomach, into the inside.  It's similar to an ostomy, but not as complicated or intrusive.  He has a tube with different caps to hook it up to a suction machine, manually pump or just have it drain into a bag with gravity.  It isn't ideal, but it does bring Joe relief.  He does not get as nauseated as he was and he has not vomited since they inserted the tube.  Joe is THRILLED with that.  The bad news is they found the cancer is spreading on the top of the intestines, which is causing some of the narrowing.  It is squeezing his intestines which is painful and problematic.  For that reason, he has to stay on TPN (IV nutrition) and clear liquids only.  He is not able to eat or drink anything besides clears.  Luckily cherry popsicles, red jello or fruit punch all fall within this category.  Joe had the hospital staff all laughing because everything Joe wanted was the 3 items above.  They would just tell the kitchen staff, don't bring anything in that room unless it is red.  One food handler brought him a whole tray of red jello and red popsicles one day.  We all laughed! 

The hospital tried everything to make his homecoming smooth, but it did not go well.  They released him around 1:30 PM, with 12 prescriptions, home health care, Pallative care, deliveries set up to the home and pages and pages of instructions.  When we got home, I called all the different companies, per my instructions, to let them know Joe was home.  The girls had all his prescriptions filled so everything was there.  We had everything perfect for Joe.  Then we found out the doctor changed his TPN recipe and we had to wait for a new delivery.  The nurse wouldn't come out until the delivery arrived.  Once it arrived, I called her.  She got called to another "quick" job and didn't end up showing up until 8:00 pm.  She arrived and said she didn't know Joe had a Power port (IV access through his chest instead of arms) and didn't know he had a G-Tube.  She couldn't handle either of those.  She called her boss, apologized and said someone else would be coming out.  Apparently no one was available, and they had to call another company.  That company could do the power port, but not the G-Tube.  That nurse arrived at 10:00 pm and did get Joe started on IV's.  He was going down hill so fast, I thought we might end up back in the hospital.  Then the suction machine delivery got all messed up and they called me at midnight saying they would deliver it between 1:00 am - 3:00 am.  I told them not to bother because there was no one here to show me how to use it.  I just handled the bag via gravity method, emptied, measured, cleaned it and took care of it the way the nurse in the hospital taught me.  So somehow between the hospital staff, doctors, insurance company, home health care companies, everything was a disaster.  Joe and I and the girls were all so physically drained, that it really started to wear on our mental exhaustion.  Lots and lots of tears yesterday, but we are re-bounding today.  Here is a picture of Joe when we first arrived home.

Joe Home At Last

Joe was up throughout the night for various issues, but this morning he did drink some juice, ate a popsicle and even read the sports page.  They are sending a new nurse out at 2:00 pm to start training me and the girls on how to set up IV's, change the TPN, take care of the G-Tube and who knows what else.

On a go-forward basis, Joe has agreed to start the Case Study Chemo treatments. The side effects should be minimal and we just pray it works.  Dr. S. said traditional chemo or any type of invasive surgery could kill Joe at this stage. I have to say that I have never in my life known anyone like Joe.  He is trying everything in his power to fight this nasty disease, despite all that he is going through.  It truly is his family and support group (all of you) that gives him the strength to fight for us all.  Please pray for healing and pray the case study works.  Thank you all so very, very much. 

Love,
Sherrie   

Day 13 in the Hospital

Joe is still in the hospital.  We had a little setback.  They were getting ready to release him and had the TPN delivered to the house with the IV hookups, had the nurses on the way to the house to meet us when we got there, had the wheelchair next to his bed to take him out and he started vomiting.....a lot.  They cancelled everything and put him back in bed.  He's been vomiting every night. They are perplexed because he is having some bowel movements, yet he is throwing up.  It may be because the blockage is too narrow to process everything and he has more (TPN, Fluids and a little food - popsicles, jello) going in his body then he can push out.  It builds up, backs up in the stomach and he vomits every night.  They just performed an endoscopy to try and reach the blockage and open it up with a balloon.  They could not reach the blockage, so it did not work.  The good news is they found NO cancer in his stomach or the part of the small intestine they could reach.  We are waiting for the doctors to review the endoscopy report and decide what do to next.  They may do more tests to try and see what is happening on the outside of his intestines or they may perform a minor surgery.  The surgery would be to insert a stomach tube to pump the excess out of his stomach (instead of using it as a feeding tube).  They said it would be capped on the outside when not in use and when his stomach starts to fill up, we would have a manual pump to attach and pump it out of his stomach.  We all have mixed feelings about that.  Joe is obviously upset about the impact to his quality of life by carrying a pump and container around everywhere, but is willing to do it if that is what it takes to relieve the nightly vomiting episodes.

On a good note, we got Shelli up to NAU so she can get settled and ready for school.  That was Joe's #1 objective and he could not emphasize it enough.  We got the message and Shelli is moved in and ready to start studying.  Joe could not be happier.

Shelli and her roommates Morgan and Caitlin on their balcony

On another good note, we celebrated Amanda's birthday today.  We had a little party in Joe's room and told stories and got to laugh a lot.  It was great.  We also took Joe outside for a walk and even though it's hot here, he just kept saying how good it felt to be outside.  Here is a picture of the birthday girl and Daddy.

Happy Birthday Amanda!

  

Still Fighting To Get Home

Joe is still in the hospital and working hard to get home.  His bowels are working ---some of the time.  They are going to start him on liquids, along with his TPN (IV Nutrition).  If it goes well, he will be closer to going home.  They said he will have to take the IV with him and he'll have home health care daily as well.  We aren't exactly sure how it all works, but I guess we'll learn as we go along.  We also learned that the surgery with the stint is not an option.  His bowels could not withstand the surgery.  Thank you again for all your support and prayers.  Joe talks about his support team every day.  XOXO The Kahlers

Still in Hospital

Joe is still in the hospital, but we did get some good news today.  The obstruction has untwisted and there is a slight opening now.  The bowels aren't working fully, but he is having some improvement.  That's a good sign that it will continue to improve.  The problem they did find is there is an obstruction in the bowel that can only be fixed with surgery.  It's a combination of scar tissue and cancer.  They are worried that the cancer could grow (like the one he just had radiated) and cause a permanent blockage.  The Dr. here wants to operate the most non-evasive way possible.  He's talking about a laparoscopic surgery to remove part of the tumor and insert a stint similar to what they do with heart issues.  He is working with Dr. Ong and Dr. S to figure out what, if anything, should be done at this time.  In the meantime, the other doctors are working on Joe's other issues - high blood pressure, bladder issues, migraines, pain control, nutrition...  They are trying to get some of the tubes out of Joe and get these issues controlled so we can get him home. We want to get Joe home as soon as possible because everyone agrees that he would feel so much better just being home.  We met with the "In Home Care" team today to talk about getting help when we do get to bring him home.  We have been receiving great care at the hospital and the nurses and doctors have been great.  We have also been receiving cards, text messages, emails, calls and visitors all in support of this latest setback.  Joe and I and the family are continuously amazed at the never-ending support from all of you.  It is so much appreciated.  I'll update again once we learn more about the next steps.

XOXO
Sherrie

It's Been a Rough Road

Joe has been having a very difficult time.  The pain has been extreme, he was vomiting non-stop and his blood pressure was extremely high.  We've had numerous doctors working with each other to try and get things under control.  They finally stopped the vomiting and have him heavily sedated to get through the pain.  It's helping things and his blood pressure is starting to decline.  They also found out his bladder infection is gone and they have found no other source of infection.  The tests indicate there has been no improvement in the obstruction yet.  They are hoping by keeping him sedated and calm, that the obstruction would start to heal.  They are starting TPN with the fluids and must keep the NG tube in until the obstruction starts improving.  They will be doing additional tests tomorrow (couldn't do them earlier because of the vomiting).  Those tests may help figure out what is happening and if there is any improvement at all.  Still praying for no surgery as it would be very dangerous with the state that Joe is currently in.  They also said he would have a permanent colostomy bag if they have to perform the surgery.  Last time Joe had the bag, he lost 40 lbs because the bowels that are left (from the cancer removal surgery) could not absorb enough nutrition to keep Joe going.  We just can't imagine going back there.  If you are praying, we do request a special prayer that surgery is not required. 

Thanks to all for you continued support.

XOXO
Sherrie

Back in the Hospital

Things continued to go down-hill for Joe and he ended back in the hospital today.  The good news is they found the problem and have been able to finally get him some relief (thanks for those prayers!)  To make a long story short, the effects from radiation wreaked havoc on his bowels.  They were in a constant spasm, which caused massive diarrhea, which lead to dehydration (hence the hospital visit on Sunday).  The CT scan on Sunday revealed a blockage from former surgery (scar tissue + cancer), but it wasn't blocking enough that things weren't still working.  Then Joe kept getting worse and worse.  Dr. S told us to get to the ER if he started vomiting.  Joe and I were up all night last night.  He was having terrible cramps and then this morning, the vomiting started.  We went straight to the ER where they discovered that his bowel had twisted since Sunday.  It caused a complete blockage, which lead to unbearable pain.  They immediately put in a tube down his nose to his stomach and started draining.  They filled up 1 1/2 containers in 5 minutes.  It was wild in there, but Joe felt instant relief.  Depending on how Joe's body reacts, will determine what is next and how long he will be in the hospital.  If all goes well, Joe's bowels will untwist (they are doing some non-surgical procedures to help that along), they start working, Joe starts drinking/eating on his own and we are home.   If they don't untwist, then they have to operate.  Dr. Ong is the only one that can operate on Joe, so we have to wait and see if/when that happens.  Prayers now needed for no surgery.  It would be such a setback for Joe.  He's been through so much, that the thought of surgery is just frightening to everyone.  Dr. S wants to start chemo on Aug 20th.  Surgery would delay those treatments as well.  Thanks to everyone for your prayers, support, emails, texts, phone messages.  Thanks to all my co-workers and boss for helping me through this as well.  As always, our support team is pulling us through.  XOXO Sherrie

Tough Weekend

Radiation is over, but the side effects continue.  Joe has been so sick.  He ended up in the hospital today due to the immense pain he’s been experiencing.  He had been up all day and night fighting the pain.  He finally woke up this morning and said it was time to go to the hospital.  Joe has such a high tolerance for pain, so when he says it’s time to go, you know things are not good.  We spent the entire day at the hospital.  They said Joe was extremely dehydrated, had a bad infection and had a bowel obstruction.  Dr. S was very helpful and guided the ER doctors to figure out what was best for Joe.  They spent the day hydrating him and getting his pain under control. They wanted to keep him for a few days, but we (and Dr. S) convinced them Joe would do much better at home since they don't need to treat his bowel obstruction yet.  We will have to take him in daily for fluids and make sure we keep him on the pain medications until the effects from radiation subside.  Your prayers and support are so appreciated.  Joe spends his spare time going through all his cards again.  It always boosts his spirits.  Thank to all from the bottom of our hearts.  XOXO Sherrie, Joe and family